Updates for Rick Stubbins

Poppy, it has been one year since God called you to be with him. We still miss you so very much. We love you with all of our hearts and souls and not a day goes by that we don't think about you!

New Update posted on 11/02/09

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Dear, dear friends,

First, Rick and I would like to thank each and every one of you for going on this journey with us. The words of encouragement, expressions of love, prayers, and generosity have lifted our spirits. At the end of a long day, we look forward to reading notes in the guest book. They make us feel connected to our friends and home.

Second, I ask that you be patient with me as I learn to navigate this web site. This is a new concept for me. Also, I hope that you will understand if I canít always write as often as I would like; although I may find Tiffany sneaking in with her own notes.

Last, please forgive any grammatical errors. I will be writing more as a journal. I donít think I will have time for rough drafts, editing, and final copies. So, if any of my students are traveling down this Internet highway with us, please donít bring any of my entries to class with corrections.

 

In Memory of Richard A. Stubbins

Beloved Husband and Poppy

May 22, 1948 Ė November 2, 2008

 

Greatly missed and dearly loved

Forever in our hearts

 

October 28, 2009

 
Dear Friends,
 
It has been almost a year since we lost Rick.  I don't remember much between his DLI (the mini transplant) on October 8 and - well I'm not sure when any real memories returned.  Most of it is a blur.  I tried to remember a while ago.  For the first time, I went back to my updates.  It was odd; I was just looking for a date.  I found September 28; it was the last time I wrote before the disease finally took him.  The strange thing was that the day I decided to look was also September 28.  Then the numbers jumped out at me as I read.  His DLI was on the 8th of October; he passed away on the 2nd of November.  Odd, how the mind works.  I decided that those were unlucky numbers.  It was sometime later when I was reminded that my birthday is the 28th.  Now, I am just confused.  I suppose it will be my own personal conundrum.   
 
I do remember that I was very against the DLI, but I had to stay quiet.  No, it wouldn't have saved him, but I think he would not have suffered as much as he did.  I can only remember the horrific week that he spent in the hospital bed in our family room unable to talk, get up, mostly unaware of everything.  I remember the terrible care that he received from Vitas Hospice.  I remember playing our favorite CDs for him; that calmed him.  One of us was always with him talking to him.  These are the memories that I hope someday will be erased and I will be able to remember the happy ones.
 
I did write an update a while ago.  Tiffany wouldn't publish it.  I was thanking everyone who had been following along, but that was going to be my last update.  She thought I would regret ending my writing.  I'm not sure.  I write in my personal journal.  Maybe she was correct about one thing; I would write one last entry to publish one year after our loss.
 
Our lives are moving on.  The grandchildren have handled it the best.  They still talk about Poppy and the things they all did.  Ellie watches videos and laughs at the fun they had.  They try not to mention his name around me; they have learned that I still cry easily and they don't want to make me sad.  Next, they try to explain that Poppy isn't really gone.  He is up in Heaven watching us and we can talk to him anytime we want.  Those are the times I wish I did have that childlike faith.  The good thing is that they are happy, remember their Poppy, and enjoy life.  Tiffany never lost that childlike faith.  Jason knows he is still with us.  They both miss him terribly, but have handled it much better than I have.  I do not understand; however, people tell me it is different to lose a spouse.
 
It has taken a while, but my friends are dragging me out of the house again.  I am surrounded by such a great support system.  I laugh and have fun with my family and friends.  I'm not sure how to explain the feeling I have.  It's like I live on the outside of this bubble.  Inside the bubble is the rest of the world and life as I once knew it.  Once in a while I step inside the bubble and things are normal again.  But then I leave the bubble for the life I now have.  The choice is mine, but I am comfortable outside the bubble watching my family and friends move on with their lives.  I know the day will come when I choose to return to the inside of the bubble and stay there.  That, I know, I must do eventually.  I have been a spectator for too long; I must become a participant again.  The desire to return to my life has become stronger.  My family and friends are responsible for that.  I have so much fun when I am with them.
 
It is why I need to stop the updates.  This is my way of keeping Rick alive and with me.  That is not healthy.  It allows me to live in denial.  At some point I do need to let go and understand that he will always be in my heart.  I need to start to live again.  It is not fair to my family or my friends.
 
This has been a difficult year.  The next two months will be difficult.  Even though last Thanksgiving and Christmas were our first without Rick, I was in shock and have very little recollection of them.  This year it will be harder without him.  I'll remember this year.  However, the holidays will remain the same.  He would want that.  The kids will find everything as it always was.  Nothing will change.
 
From the bottom of my heart, I thank everyone who has followed us on this journey.  Now I need to try to let go and start living again.  I can't do that and continue with the updates.  I'm not sure I will ever read any of the updates.  I read the one on September 28 and that was difficult.  They will be there for our children and granchildren.  They can see how strong he was and how hard he fought to beat the leukemia.  He would have done anything to stay with us.  He was very courageous.  They will also see how much fun we had despite the disease.  It is a wonderful story of life, love, joy, and determination. 
 
Remember that life is very precious and fragile.  Live, love, and laugh with abandon.  Never take anything for granted.  Live each day like it could be your last.  Forgive quickly.  Take time to enjoy life.  Be well!
 
We shall always miss you, Sweetheart!  Always in our hearts!  

May 22, 1948 - November 2, 2008

 
With much love,
Nanc

Saturday May 2, 2009 - six months today

Well, I made it through the day. Ellie spent the night. So, this morning there was no time to think about the date. I didnít remember until late this afternoon. That was better for me.

Okay, I think we are finally done with the mice. Itís been over a week and Tiff hasnít caught any. The mousetraps havenít been set off and the cereal in front of each one is untouched. Iíve started to clean up the mess they made in the basement, but that may take a while. Iím getting there one day at a time.

The thank-you notes are all mailed. It took the last two weeks, but I am done. I do hope I didnít miss anyone. Ö.one thing at a time.

Last weekend was Laurel Springs reunion. I had hoped to be able to attend. It was a three-day event. However, things just didnít seem to be working. Since I am still not driving, one of the kids would have had to have taken me and then come back to get me. Also, Tiff ended up needing me to watch Ellie. That is very unusual. I had already considered that it may be too soon and more bittersweet than happy for me. As much as I would have loved to have seen everyone, it just didnít happen. Your class has adopted me and it is so special! I canít wait to hear about it. They told me they took lots of pictures and will send them to me. I know they missed you, Sweetie!

This week I am going to try to make myself work on the marker. Iíve avoided it for long enough. The kids will take care of most of the things. I already know what I want. You will like it. Weíre going to share it, so I already know that I like it. You never liked making these decisions.

We miss you so much, Sweetheart. You would be proud of us. We are slowly healing. I wish I had the vision the little ones have. They still talk to you like you were right here. They know you are up in Heaven watching over us and listening to everything we say. Iím crying a little less. I am getting a little stronger. OK, so I am still reading sad books and watching sad movies. We love you, Poppy.

April 17, 2009 Ė Friday

Dear Friends,

It is difficult to believe that I am approaching the six-month date for when Rick left us. Iíve started writing now so I can hopefully have this posted then. May 2, 2009

We made it through another holiday Ė Easter. The grandchildren donít read these so I can tell my Easter story. The Easter Bunny still exists for them. I hard-boiled three dozen eggs for the Ellie, Nicky, and Alyssa to dye. Tiff came to help me on Good Friday with the dying of the eggs. I covered the kitchen table with a plastic tablecloth; I removed the chair pads from each chair; I placed plastic trash bags under each chair (there is a rug under the table); I got three of Poppyís shirts for the kids to wear like smocks. We were prepared! I donít believe there is any "preparing" for Nicky. Tiff and I set out bowls for each color. I added the vinegar to each bowl. We dressed the kids and placed them at the table. We thought they would enjoy watching the dye tablets dissolve and fizzle in the bowls. Before we could open our mouths or even move to get to him, Nicky picked up the bowl closest to him and asked, "Whatís this?" as he emptied the vinegar into his lap. So much for the smock, he had a lapful of smelly vinegar. OK, no problem. I ran for a new smock and found his bathing suit from last year. This was so minor; normally he would have waited until we had placed the dye tablet in the bowl! They all had fun.

I missed Rick when I sat and filled several hundred plastic eggs with candy and money. It was one of those weeks when everything was going crazy. All plans had gone awry. Tiff managed to get to the store to buy all the candy and little toys for all of the baskets for our home, her home, and Jason and AJís home. However, no one was able to get here to help fill everything. This was when I really missed Rick. We always filled the eggs and baskets together. It was worth every minute when I saw the pictures of the kids on Easter morning.

Another last minute problem was still looming Saturday evening. Nickyís pants for church the next day didnít fit. Jason called and was headed to the mall at 8:00 PM. He knew they were going to be too long, so I was preparing to hem them after he bought them. He would just come right to the house. I just needed a call to find out what thread to put in the machine. He never did find them. Nicky had other pants and he was more worried about getting to wear his tie!

Itís been a busy week. The kids have had off from school. Ellie spent the night with me. She hasnít been here for the night in a long time. Tiff rented two movies for her. When they went to rent the movies, Ellie was very careful. She read the back of each movie. She explained to her Mommy that it had to be something that didnít make Meem cry. We watched one while Tiff was still here. Tiff went home and we went up to bed. We were going to sleep in my room. She got ready for bed and I put the DVD in the player. It didnít work; it was scratched. She just decided that she would watch one of the other movies that she had here. No big deal. It took a couple of hours before she finally drifted off to sleep. I could tell she was a little nervous. I was afraid that I was going to have to call her Mommy, but she finally fell asleep.

I had been waiting for her to fall asleep so I could go wash my face and brush my teeth. I was just so exhausted. I washed my face quickly. Instead of using my regular cream, I just grabbed cream that was close to me. I had never used it before, but I was tired. I rubbed it into my hands and on my neck. Something didnít feel right. I put my glasses on; it was hand soap! I rinsed my hands over and over again. I did the best I could with a washcloth to get it off my neck. All night long whenever my hand got near my nose, all I could smell was that awful soap!

Needless to say, I did not get much sleep that night. We have a king-sized bed. Ellieís stuffed animals got one side. Ellie slept in the middle and half of the other side. Ellie and the stuffed animals all slept quite well! J

I have finally gotten myself to the point where I think I can choose a marker for the cemetery. I feel sorry for the people who call. They donít call often, but they do stay in touch. Tiffany has talked to the place that we will use. I just couldnít think about it. It made things to final. However, I know I need to face this. Each time someone calls I become hysterical on the phone. I canít stop myself and I really feel sorry for the person on the other end.

The thank-you notes are almost finished. They are all on the computer. I had hoped that I would be able to print each one out this week, address the envelopes, and mail them. Unfortunately, life got in the way again.

I have had mice for several weeks. The other night Jason was here. He was sitting in the chair next to the pantry in the kitchen. He asked if I had heard a noise. Of course I had. Itís the mice. I just donít want to deal with them right now. I have too many other problems I am trying to handle at the moment. Well, I canít lie. I told him I thought it was probably mice. He opened the pantry. I knew what he was going to find. They had eaten through the candy. The floor was a mess. It was a nightmare. He picked up all the bottles off of the floor. He emptied the huge container with all the candy and tossed the container with it. He emptied the bottom two shelves. By then it was late. He said he would be back the next day to finish. I thanked him and kissed him good-bye.

There was a method to my madness. Iím not afraid of mice; they werenít leaving the basement or the pantry. Would you? There were so many goodies to eat. Now I just had a mess. It took me until 12:30 AM to disinfect each bottle, can, and any other item that had been in the pantry. Then I placed each item into boxes that I had found. Next, I had to disinfect everywhere that they had been sitting after they had been taken from the pantry. The floor would need to remain a mess.

The next day Tiff bought "safe" mousetraps and set them out. She has caught several and released them in the park. I have sealed the hole in the pantry with steel wool. I havenít had any mouse activity in the pantry for a week. Today I finally disinfected everything else that was in the pantry, disinfected all the shelves, scrubbed and disinfected the floor AGAIN, and put the things away. We still have at lest one in the basement. He is quite the little escape artist. Iím not cleaning up the mess in the basement until I am sure it is free from mice!!

Nicholas had his first softball game last night. I went along with his Aunt Tiff, Uncle Fran, and Ellie. His Mommy and Alyssa were already there. Bub (my ex), Gammy, Uncles Ty and Connor, and Aunt Molly were all there, too. He had quite a cheering section. This is his second year for this sport. Last year it was T-ball. This year someone is pitching to him. Well, this was his first game. Unfortunately, every practice had been cancelled due to rain. So, it was his first everything. He hit the ball, made it to first base several times, and brought one or two runs home! I was cheering. These are little kids; therefore, I think it is important to cheer for everyone. The first time I cheered for the other team, I do remember someone saying to me, "You do know thatís not Nickyís team?" Yes, I did. Then Bill (my ex - Bub) who was standing next to me finally said, "Iím moving away from you. You are way too loud." Just for the record, I would call that being enthusiastic! If they ban me from the games, then we will revisit the "loud" remark!

Until laterÖÖ.

Love,

Nance

March 1, 2009

Dear Friends,

I promised myself that I would begin writing fun, happy updates. That may be the reason that I have avoided writing. Trust me; I am trying.

Coping with the loss of your beloved spouse is not what I imagined. I thought I was so prepared for the future. Heaven knows I had many, many years to think about it and try to envision it. Iíve learned that it doesnít work that way. You cannot be prepared. Unfortunately, I seem to see this as a weakness. How can I still be where I am when I knew the inevitable was looming ahead of me? I spent hours and hours while lying in hospital beds preparing for my life alone. Rick would be sleeping and I would be worrying about when this disease would finally win.

I still research grief. I think I am stuck in anger. I am not angry with Rick for leaving me. I am angry at a disease that canít be cured. I am angry that the research that has been done was too late for him. I am angry that he isnít with me to enjoy watching our grandchildren. I am angry that we will not grow old together.

No, my life is not spent crying and living in the past. I have learned how to compartmentalize. I pack the grief away in a little box. I can usually keep it there for some time while I find enjoyment in my new life. The grandchildren are growing so quickly. They love to put on plays when they are here. We laugh until we cry. They talk about Poppy almost like he was right here with us. He is in Heaven and is watching us all the time. They seem to accept that he is still with them. How sad that when we grow up we lose the ability to see life through the eyes of such innocence.

My younger sister Donnalee kidnaps me sometimes and takes me to a store. OK, so itís the wine store! We laugh and giggle like we were still in grade school as we wander up and down isles. Now, however, we can buy the bottles. Itís even more fun when they have wine tasting. I buy bottles of wine and take them home. They are all sitting here Ė unopened. Some day I may have my own wine tasting party. Maybe we should find another store to frequent! J

Donnalee is also trying to convince me to go to a piano bar with her and her friends. She wants me to start singing again. Iím not sure I am ready for that. I stopped singing when Rickís CLL reared its ugly head. Iím not sure I remember how.

I do still go to therapy for my fractured wrist. Iíve started to play the piano again. No, I hadnít done that for many, many years. Iíd forgotten how much comfort I found it playing the piano and singing along. It is slow and painful, but I am working at it.

Iíve started walking Baby our rescue greyhound again. The other night we walked for at least a mile and a half. She loves it. She is such a faithful companion. She is also very tall. When I become unsteady on my feet, Baby is there to help me maintain my balance.

The other night I found myself walking down the street to the town library. A friendís son Matt Quick has written a book. Actually, I believe he is working on his third book. Mattís father Mike graduated from high school with Rick and me. The books title is The Silver Linings Playbook. Matt can be found on Facebook. I had a wonderful time. I reconnected with some dear friends. It was fun to see Matt. Tiffany, our daughter, used to be his babysitter! The book is being made into a movie. I am reading the book and enjoying it. Sometimes it makes me cry when he writes about our town Collingswood and I remember when we were kids.

Last week I went to dinner with twenty girls from my high school class. Many of us are in touch with each other all the time. Some of us hadnít seen each other for many years. For the last month e-mails have been flying across the Internet with all sort of stories for discussion that night. We laughed and reminisced about high school. We took lots of pictures. We try to do this at least once a year.

On March 21 many of us will be at the Collingswood Athletic Hall of Fame Dinner. We will be honoring one of our own 1967 athletes Ė Margaret Carter. We will also be celebrating with Chris Schweim from our class. Her late father will be inducted. She will be flying up from Alabama to be here. Our class may party all weekend.

Today we are preparing for a Nor-easter (have no idea how they spell this kind of blizzard!) Chris already wrote that they are having snow in Alabama for the first time since they have lived there. The kids will be checking on our snow blower. I donít think it has been used in two years. I hate to admit it, but I do love the snow. I donít like the problems it creates. However, the little girl in me still thinks of having the day off from school, making snow angels Ė still do, building snowmen, sledding, snowballs, and coming inside to hot chocolate.

Unfortunately, I canít find a season I donít love. We seem to live in the perfect location for me. I look forward to each one with great anticipation. By the time I tire of one, we are headed into the next one.

My life is moving on with its ups and downs. No, it will never be the same. A part of me will always be missing. It shall be my choice to leave that space empty. I have no desire to ever replace the love I once had. That would not be possible. I open my box and take out my memories when the time is appropriate. I cry and miss the love of my life - Rick. I do know that he is patiently waiting for me on the other side. I only recently realized that I was a widow. I donít like that word. I think there should be another word to describe the person whose life will remain in limbo until he or she joins the missing partner. It should give the feeling that the person is still living, but is also happy with the memories of the missing partner. We are alive and participating in life. We are not living in the past. We are, however, happy with the life we once shared. We are allowed to embrace that lost love with great feeling. Society cannot dictate that at some time one must let go of the past and move on. One can hold tightly to the past and still move on.

March 7, 2009 Ė Saturday

On Monday we were shoveling out of a Noríeaster that dumped lots of snow on us. Temperatures were in the single digits. Today we are in shorts and playing all sorts of games in the backyard! Ah, only in New Jersey. I love it!

Last night I talked on the phone to a special friend who graduated with Rick and me. I am surrounded by so many loving, caring friends and family. They allow me to cry and miss Rick. They also make me laugh. I told him that I had written an update but had not sent it to Tiffany to publish. I was worried that my updates have been too depressing. Iíve forgotten or maybe just lost the humor that we always found in life. Last night he reminded me of the humor that I am still finding in life. I had just forgotten it. It is there. I live; I laugh; I lose the memory. Maybe I have found my problem. I need to allow the fun to linger in my memory long enough to make it a new memory!

On Thursday another dear friend came over for lunch. I tried to talk him into ordering a pizza and eating here. He pushed to get me to go out to lunch. It was about 2:00 in the afternoon. He knows that I am not leaving the house unless I really must. I donít think about it much. I am happy here.

Well, I agreed to go to lunch on Haddon Avenue in downtown Collingswood. We had lunch at one of the newer restaurants. Most of the tables were empty. We were late for lunch and very early for dinner. This place is usually packed. Lloyd chose to sit at the window table. The table in the window was a large round table that seated probably six. However, the waiter didnít seem to care. We basked in the warm sunrays shining through the crystal clear windows. Lloyd is deaf in one ear. We sat so I would be speaking into his good ear. However, we were not that close to each other. The table was pressed up against the window. To make things even more interesting, the waiters are Romanian. I was having difficulty understanding. So, I had to keep interrupting while the waiter read the specials of the day. I was doing it for me so I was sure of what he had said, and also so I could ask Lloyd if he had heard. This, therefore, took a while. And after all that, I didnít want any of them! I had chosen two items on the menu. Again, I had to ask what certain words meant. I want to know what I am eating. This is the part that poor Tiffany could not believe. One of the entrees had a Grey Goose sauce. I had no idea what that was, so I inquired. He mentioned something about vodka. Well, I know what vodka is; I donít know what Goose sauce is. By then I was too frustrated to continue. I just decided to go with my other choice. I told Tiffany about the sauce. Apparently, Grey Goose is vodka! I can see that if I had continued that conversation in the restaurant it could have only gone down hill. Tiffany was just thankful that I didnít ask! How should I know that Grey Goose is a brand of vodka?

Funny, I guess crazy things are still going on in my life. I think I am just not in the right place yet to notice them. I think I need to begin to focus on these things more often. These are the things that kept Rick and me laughing. Well, mostly Rick was laughing at me; I just tend to laugh a lot. I live in this strange world that no one understands. Iím not sure that matters if I am happy living in it.

I shall save my Jose Cuervo story for another update.

Until laterÖÖÖÖ

Love,

Nance

January 19, 2009 Ė Monday

Dear Friends,

No, I havenít abandoned my updates. I havenít been able to deal with them just yet. For those of you who would like to read Louise Barikianís tribute to Rick that she delivered at his service, it is at the end of this update.

I thought I was doing better than I guess I am. I had researched the stages of grief. I was determined to be okay. We had had twelve years to understand the disease and the fact that it was terminal. We had been given the last five years as a gift. Everything was supposed to get better with time. Why is it suddenly becoming worse? Now after all this time, why can I not accept it? Iím not sure anyone has the answer to this question.

I seem to have regressed. I am living my life in denial. I prefer to call it avoiding. I know it is a game of semantics, but it does sound better. If I stay busy, donít think about it, donít change anything in the house, donít move your clothes, donít unpack the hospital bags, go to sleep with our favorite movie on the DVD and, hear you in my dreams then you wonít really leave me. Rationally, I know this is not true. However, it hasnít stopped or changed any of this behavior. Each night for over a week you have kept me company in my dreams. I am now afraid of the night I fall asleep and you may not come to me.

I donít have the other stages, or just went through them too quickly to notice. I donít believe in bargaining. I have never been good at anger. I do not believe in despair. Bargaining is foolish. At whom would I be angry? You fought with every fiber of your being to stay with me. Our doctors were the best. Despair? You, love of my life, are gone. However, our children and grandchildren are still here. They are a huge part of our love. You would not want me to ever live in despair. That would be unfair and terribly cruel to everyone I love.

The other night, I took my first baby step. When I lost you I was overwhelmed with cards and letters. I opened each one carefully, looked at it very briefly, and carefully placed it and anything that was with it back in the envelope. I found a box. After I glanced at each one, I placed it in this box and put the lid on it. Finally, l summoned the courage; I opened the box. I carefully opened each card and letter and read it slowly. There were beautiful poems, letters from friends, anecdotes about you as a teacher, anecdotes about us as teenagers, checks, Mass cards, and an entire stack of cards from the Leukemia Society with names of people who had made donations. I cried.

Now, I need to begin the process of writing all the notes to everyone. That will take some time. Although I can now write again, it is a slow painful process. I can also only write for so long before I must stop. I think it is best that I write all the notes and send them at the same time.

For those of you who wonder why you have never received a response to your cards, letters, poems, and memorable stories Ė I couldnít face the box. I am truly sorry.

The rest of this update is more of a letter to Rick. Please feel free to stop here. First, I wanted people to understand why I hadnít written my thank-you notes yet. Second, I wanted to post Louiseís tribute to Rick. Everything between this paragraph and Louiseís tribute is simply the ramblings of a grieving wife. It may be best to move past them. I needed to write, and so I did.

Iíve been sick for more than a week. Iíve spent the days watching movies. I do need to learn to watch only comedies. However, since I can only see the titles, I have made some poor choices. It was way too soon for "P.S. I Love You"; you would have written those letters if you had thought of it. It reminded me of all the journals I have filled with love letters to you and the kids. All left unread. I was supposed to read them to you when we were in our 80ís. I knew if I started to read them to you at the end, you would have known what I knew. Something to you from one of my journals:

So, fall asleep love, loved by me...for I know love, I am loved by theeÖ

Grow old with me the best is yet to come.

Grow old along with me, the best is yet to be.

Grow old along with me! The best is yet to be, the last of life, for which the first was made. Our times are in his hand who saith, 'A whole I planned, youth shows but half; Trust God: See all, nor be afraid!'

Robert Browning

Of one thing I am very sure, no one will ever love me like you did.

Today I watched "The Bucket List." I cried again. Neither of us would have ever needed a list. We moved through the stages of life with such acceptance, fun, and anticipation. We missed the kids when they moved out. We filled out empty nest time with dancing. There were no regrets. We hadnít grown apart. There would never have been a list of things we had wanted to do and never accomplished. We were happy with all that we had. We danced and laughed just like we did when we were teens. This time me moved together so much more smoothly; we knew each otherís moves perfectly. Who else moves their dining room table to the living room so they can have their own dance floor for every night? We do!

The arrival of grandchildren was another new stage in our lives. We embraced every moment of it. It was the circle of life beginning all over again. You were experiencing your first babies. You couldnít have been any happier. I never knew for whom I was happier Ė you, our kids, or me! It didnít really matter. Life was good. That was just a year before treatment began.

I will never have a list of things I want to do. Iíve accomplished the important things in my life. I am doing the things I want to do and that make me happy. My denial stage has not kept me from being with family and friends. It has not kept me from typing my journals and reading. Is there anything wrong that I take pleasure in the small things?

I love to watch the sunrise and the sunset. I remember driving to work and watching the most glorious sunrises. I would immediately call you and ask you to look out the window at home. We would watch it together. When I see a sunset I remember two things. I remember driving down to Cooper River to park at the marina and watch it together. It would slip behind the buildings in Philadelphia all too quickly. We never ceased to be amazed at the spectacular skyline as the buildings disappeared into a haze of darkness sprinkled with tiny lights inside them. I remember singing "In the Gloaming" with Ellie while we watched the beautiful hues of pinks, purples, oranges, and reds light up the evening sky. I remember how much I loved the autumn and the most magnificent colors dressing the leaves on the trees. I remember how I constantly talked about this one tree at the corner of Browning Road and Collings Avenue. I passed it on my way to work. On the perfect day, the early morning rays of light would fall on it from the climbing sun. The rays tiptoed from the top of the tree sliding down over the brilliant red and orange leaves until they reached the slim trunk. I would have to stop sometimes and just watch the miracle. I would go on and on about how it looked like God had turned on a light switch and the tree would literally glow in the early morning dew. One morning you jumped in the car and drove over and took a picture of my tree for me. That was true love!

I have learned how to slow down. Yes, I know I was always in a hurry. I had so much I wanted to accomplish each day. I wanted nothing left unfinished. What if I didnít wake up the next morning? I never wanted to waste any time. Now, I have all the time in the world and no desire to hurry. I am surrounded by so many things that remain unfinished; you didnít wake up the next morning. Maybe one day I may decide to try to finish some of them. They all involve you and I canít touch them yet.

No, the one thing you loved so much will never change. I will always live in the moment. When I am with the kids or friends, I am living in the moment. I am enjoying what I am doing right then. I am never in a hurry. Iím not thinking about the past, or what I am going to do ten minutes from then. But, that has always been my way of living my life. Be where you are in that moment! Enjoy it and savor it. Yes, a walk with the kids could take forever. Who says you canít stop and sit on the sidewalk and examine a worm, an interesting flower, or some other interesting thing. Everyone should be able to see the world through the eyes of a child. That is a rare gift. It is one to which I try desperately to cling.

When I read about the stages of grief, it said that it could take three months to three years to get to the final stage of acceptance. Iím allowed three years. No, that doesnít mean that I wonít continue to live. It means that I can hold onto you. As long as I live a normal Ė remember no one ever said that I was exactly normal Ė life, I donít need to let you go. I think that is a fair exchange. That way I get to keep you next to me forever. I think that shall be my final stage of acceptance. If I act "normal" I never have to let you go.

Until laterÖÖÖÖÖÖ

Love,

Nance

From Louise Barikian:

Funeral Service for Rick

Dear Friends,

I would like to extend my condolences on behalf of our Park School family to Nancy, Tiffany, Jason and their families. Rickís life revolved around his family, and he loved all of you so much. He was happiest when all of his children and grandchildren were at the house or in the pool. He was so thankful that you all lived so close by, spent so much time with him, and were a constant part of his daily life. Rick especially enjoyed being Poppy and relating anecdotes about his grandchildren. I am awed by the love, care, and devotion you showered upon him, especially during these last five years when he became ill. I cannot imagine how difficult it must have been to watch someone you love, endure such suffering. As much as you are grieving at this time, please be comforted by the knowledge that you were a constant source of love and laughter to him, and you could not have done any more to ease his pain. He is at Peace with God now and itís his turn to help take care of you.

When Nancy asked me to speak about Rick as a teacher, I immediately said yes, because he was not only a professional colleague to me, but also a beloved friend. He was one of the first people I met when I began teaching in Somerdale 35 years ago and was not only my role model, but also instrumental in helping me survive that first year. Iím hoping heís watching over me to help me get through this talk without breaking down.

Rick had a passion for teaching, and he loved to make Social Studies and History come alive for his students. This is not an easy feat when you are dealing with hormonal teenagers who are more interested in studying the boy or girl across the aisle from them than in learning about the American Revolution. But Rick was not a teacher who taught Social Studies, he taught children. There is a difference!

We worked closely together because he would have many of my Learning Disabled students mainstreamed into his classes. They loved his classes, because he differentiated instruction to meet the needs of all of the students in his class, long before it was mandated by law. He believed in the students and their ability to learn. Rick was patient and caring, but expected them to participate in class and complete their assignments. I seldom heard him raise his voice, because he did not have to. He respected the students and they in turn respected him. He was the teacher they could turn to when they needed someone to confide in over their bad grades, their parentís divorce or their break up with their boyfriend. He was not only their teacher; he was their mentor and friend. A generation later, he often taught the children of former students, and had an uncanny ability to remember all of them.

Rick was a dedicated member of the Somerdale Education Association, where he held many leadership offices over the years. He also chaired our Negotiations Committee and various other committees. We spent many evenings working on salary guides and contract language and he always fought for what was best for the entire staff.

After Rick became ill and then retired, many former students kept in contact with him, through cards, letters and his blog site. On the blog, Bart White commented that Rick was the inspiration for his love of history and his decision to become a teacher. I canít imagine a greater tribute and legacy than that. Even now when former students stop in school to visit, Rick is a teacher they ask about. His retirement left a huge void at our school because, he was impossible to replace. For thirty six years, he was paid for doing something that he loved- not many people can say that. His true rewards for teaching were not monetary, it was the knowledge that he had made a difference in the life of so many children!

Rick and I enjoyed many fun times together too. Patty, Cheryl, and Marie arrived in Somerdale shortly after and we all became close friends. We would have student faculty softball games, and Marie would be the catcher with a baseball glove on each hand while holding her pocketbook on her arm. There were many wonderful social events at Rickís house and we all especially enjoyed the Halloween parties he hosted. When Marie and I decided to Take 20 of our Special Education students to Batsto for a weekend camping trip and canoe ride, Rick agreed to chaperone the canoe trip. Even he wasnít crazy enough to sleep in the woods with that gang all weekend. After work, we often went out together, and even made it back to school the next day.

After Patty and Cheryl left Somerdale, we all still remained close friends. We would meet for dinner several times a year, and spend the night laughing and reminiscing. In May, we all spent our last evening together at a 25th anniversary dinner for Patty at Merchantville, where Rick, Cheryl and I were her invited guests. Rick looked wonderful and a casual observer would never have guessed the effort it must have taken for him to be there. But thatís the kind of loyal friend he was. Patty later sent me a copy of a photograph of the four of us together at that final dinner. Her note said " Family- thatís what it feels like." And it did!

Rick was a calming force for all of us. Seldom did he get rattled or angry. He was always upbeat and positive, and this character trait persisted even when he was so ill. I truly believe that he was able to fight this disease as valiantly as he did because of his unfailing optimism and the love of his family and friends.

Carl Jung once said, "One looks back with appreciation to the brilliant teachers, but with gratitude to those who touched our human feelings. The curriculum is so much necessary raw material, but warmth is the necessary element for the growing plant and for the soul of the child"

The best teachers teach from the heart, and Rick was that type of teacher. At the end of a day of teaching, you often do not realize the impact you have had on a child. The fruits of your labors often are not realized until years later. Rick touched the hearts and souls of thousands of Somerdale students over the years. He was an inspiration to all teachers. We have lost a dedicated teacher, colleague and friend, and our hearts ache with the loss. Thank you Rick!

November 10, 2008 Ė Monday

Dear Friends,

As most of you know by now, Rick lost his battle with CLL (chronic lymphatic leukemia) last Sunday evening. He never gave up. He fought to stay with us until the very end. He was determined that the experimental treatments would eventually work. We waited for that miracle until the very end. For reasons we do not know, God needed him more in Heaven.

My family and I were amazed and shocked at the number of friends, students, and former students who attended his viewing and service this past Saturday. I knew it was the teachersí convention weekend. Since Rick spent his entire career teaching, I assumed many of his friends would not be able to attend. I was so very wrong. We were completely unprepared for the outpouring of love he received. It was such a wonderful testament to the person he was and the way in which he lived his life.

Teaching may have been his career, but it was also his passion. He loved the kids. He wanted them not just to learn but also to have fun while in his class. He wanted History to come alive for his students. He wanted them to feel that in his room was a safe haven. He was always worried about the ones he felt he couldnít reach. He wanted to make a difference in each childís life.

I am so very proud of him. So many former students and their parents were there on Saturday. Some I recognized immediately. Others I knew when I heard the name. He wanted to make a difference and he did. I know he was looking down from Heaven with a smile on his face and feeling that his life had a purpose. He had fulfilled that purpose.

Rickís health had begun to decline rather quickly last May. I will never know how he endured the treatments all through June, July, and August. However, he never complained.

The kids were always here. He could no longer even get up to play with them even for a short time. But, they were so good. We would watch them one at a time always stop and stand next to Poppy in his recliner. They would talk to him, give him hugs, and kisses, and share stories with him. They were always the silver lining in his dark cloud.

The last five years have been difficult. Most of them were spent at doctor appointments or hospital stays. Although we hoped for a positive outcome, we secretly knew the worst that we could face. We took hundreds and hundreds of pictures. We always made sure Poppy was in them. We took hours and hours of video. The grandchildren are young. Tiffany and Franís daughter Ellie Parker turned six in June. Jason and AJís son Nicholas Andrew will be six this Friday. Their daughter Alyssa Jean is three and a half. They will never forget their Poppy. We will be watching lots and lots of videos. Ellie sleeps with his picture under her pillow. She wants a trampoline so she can jump to Heaven and be with Poppy. Nicky thinks itís really great because Poppy has a Wii game with a screen the size of a wall. The three of them are very close. We have kept them together here at the house. Poppyís presence is still felt. They run through the house screaming and playing. Everything is as it should be. Nothing has changed. They still feel the love that has always permeated our home. That will never change.

Our Assistant Pastor from St. Paulís Presbyterian Church in Laurel Springs, NJ, officiated the service. My ex-husband Bill Walton and his wife Maureen sang. Rick had told me some time ago what he wanted, just in case something ever happened. He knew which hymns he wanted. He knew where he wanted his service. I made sure it was all there for him.

Some people may think it odd that Presbyterians would ask to have Ave Maria sung. We used to laugh about that. We always said that we would explain that people werenít kneeling; they would be the Protestants passing out! J Until Rick became very ill, I used to bake hundreds of Christmas cookies. My favorite Christmas CD was one by Vince Gil and Olivia Newton John. I would turn on the CD player. When she sang Ave Maria I would just keep hitting replay. Sometimes that song would play for four and five hours Ė non-stop! We would listen to her sweet voice while the sweet aroma of freshly baked cookies would meander through the entire house. We loved it! Thank you, Maureen, for bringing our Christmas memories back. When Rickís voice was still okay we sang in the choir (for years) at St. Paulís; "One Step He Leads" was one of our favorite anthems. Thank you Bill and Maureen for singing that for us. Thank all of you from St. Paulís who sang along with them to that anthem and "Shine, Jesus, Shine." I know Rick was happily singing with us. He had also requested "What a Friend We Have in Jesus" to be sung. I honored all of his requests.

Barry had asked if someone would write a tribute to Rick. He wanted everyone there to have a little glimpse into Rickís personal life. No one knew him better than I did. No one could tell his story the way he would have wanted it, except me. The kids both protested. I could write it, but I had to let someone else read it. No! Only I could write and read our story!!

OUR STORY

"Barry asked to have a tribute giving everyone a small glimpse into Rickís life. My choice would have been to start in the middle when he and I began. However, I shall take my fatherís advice and begin in chronological order.

Rick grew up in the idyllic little town of Laurel Springs, New Jersey. He lived in a beautiful, big white house across from a large field. It was a big family Ė his Mom and Dad, brothers Ted and Rob, and sister Mary Jane. His Momís parents, whom he loved dearly, lived upstairs. In the yard was a huge flagpole with the flag hanging in memory of his older sister Kathy.

Summer weekends were spent at their home in Sands Point Harbor, New Jersey. He couldnít wait for those trips. His Dad loved the water and had a boat. Rick would always be following his Dad around. His greatest joy was going out on the boat. Rick, too, loved the water.

His Mom was always taking them fun places. Those were great trips. Years later, we returned to some of those places and watched our children Tiffany and Jason play.

Lucky for me, Laurel Springs went to Collingswood for high school. That was where we met. I was a Sophomore; he was a Junior. We shared a study hall in the cafeteria. We were not all that close together in proximity; however, we faced each other. I was knitting a maroon cable knit sweater for Clothing class. There was no talking, but he would smile at me and I would smile back. He always insisted I was flirting because I raised my one eyebrow. I was fifteen and he was sixteen. It was September 1964. This was when our lives began.

We became best of friends. We tried dating, but itís odd dating your best friend. He spent almost every Sunday night at our home watching TV. He sat through countless slide shows. We never missed Wednesday nights in the summer at the Under 21 Club at the high school. We both loved dancing. He always walked me home. We both attended Glassboro together. Our friendship was a bond that no one could break. Years later he would always tease me that his worse curse was that my family loved him. He said no guy has a chance when the girlís mother loves him.

He and I both eventually married and lost track of each other for 12 years. Fate, by the name of Joe Beierschmitt, brought us back together. Joe is our neighbor Ė Rickís back then. On our anniversary I always told Rick we should send Joe a thank-you card!

Iím not sure why any man in his right mind would want to marry a girl with two pre-teens. Iím afraid it was love at first sight. He taught junior high; Tiffany and Jason were his specialty. On May 18, 1984, Rick and I married and became a family.

Rick was a kind, gentle, loving, compassionate husband, father, Poppy, son, brother, and friend. His family was his life. He lived for the kids and me. If anything went wrong or broke, it was always, "Poppy can fix it." And, he always did.

When our children Tiffany and Jason had three new half-brothers and one half-sister, we all embraced them as our own. We had four grandchildren Max, Tyler, Connor, and Molly before our two even married. There are no "halves" in our family. We are all just one.

Rick and I raised our children together with my ex-husband Bill, his wife Maureen and Tiffany and Jasonís brothers and sister as one big family. We spent all of our holidays together. We vacationed together. Our children only knew self-less, unconditional love. Divorce never divided our family.

Tiffany and Jason both married in 1999. We gained a new son Fran Smith, Jr. and a new daughter Alaina Vasta. Our family continued to grow. I watched Tiffany escorted down the aisle with both of her Dadís - one on either arm.

They were all devoted to Pop. They all even moved to Collingswood to be close. Nothing could have made him happier than when his grandchildren Ellie Parker Smith and Nicholas Andrew and Alyssa Jean Walton were born. He was with them all the time.

Rick had had to accept the fact a long time ago that he would never be able to have children. He used to tell me that he never dreamed that his life would be blessed with so many children.

Rickís legacy will live on through the lives of his children, grandchildren, and extended grandchildren. He taught them so much through the way in which he lived his life. He taught by the way he lived his life, not by what he said.

The last twelve years have been difficult. The last five have been the beginning of the end. I am watching our children and grandchildren deal with unbearable grief. There is a void that will never be filled. Time will ease some of the pain, but he shall always be missed. Tiffanyís best friend is gone; Jason will reach for the phone to talk about sports, and the little ones will wonder who will answer all their questions. Poppy knew everything.

We have been blessed with the long, soft good-bye. We knew the importance of not wasting time on trivial things. We made the best of every moment. Nothing was left unsaid. He fought the most courageous battle I have ever seen. He was determined not to leave us.

He now soars with the angels. His body is healthy. His voice is healed and he sings with the choir. We lived to dance; it was our passion. He is no doubt practicing the two-step and the shuffle and waiting for the day when I shall join him. We shall dance on the clouds and I will laugh with delight as he lets me twirl. I will once again be forever in his arms. But, this time I wonít need to ever let go again.

Our beliefs are very strong. We all know that we will be together one day. Until that day, Sweetheart, Poppy, we shall miss you. You will always be inside our hearts. We love you."

- - - - - - - - - - - - - - - - - - - - - - - - - -

I will write to Louise Barikian to see if she has her eulogy on the computer. If she does, I will place it in the next update.

There are no words I can use to express the heartfelt gratitude my family and I feel for the generous out-pouring of love for Rick and us. Saturday was a vision far beyond anything we could have imagined. We thank you from the bottom of our hearts. I have received such wonderful, loving cards. Nothing could have been a better testament to the life he lived. He was, indeed a quiet, even-tempered, loving, compassionate, dedicated, caring individual. He shall be greatly missed. Forever in our hearts, forever a part of our lives, we shall always miss your presence in our lives.

Until laterÖÖÖÖ..

Love,

Nance

October 9, 2008 Ė Thursday

 
Dear Friends,
 
We are home from Johns Hopkins.  Actually, we returned late yesterday afternoon.
 
The two appointments were very routine.    First day: labs Ė physical with the nurse practitioner Ė consent forms with doctor.  Second day: D.L.I.  Most of the first day was spent sitting in a hotel.  We left the hospital the second day immediately after an hourís observation from the D.L.I.  We headed home.  Rick slept most of the way to Baltimore and the entire way home.  They had given him anti-nausea meds after the D.L.I.  I think they may have helped quite a bit. 
 
Consent formsÖ..the doctor was quite likeable, obviously brilliant, and a very good teacher.  However, we were in a little room.  Rick was on a bed.  I sat  curled up at the end of the bed.  The doctor sat in the little plastic chair in the little room.  This was not a place where I could sit at a table and take notes.  Mostly, we were both overwhelmed.
 
It was incredibly difficult for me.  This is where we spent most of two and a half months for his transplant.  I hated hearing the comments from the nurses.  I hated hearing the names of the drugs he had taken.  The memories came flooding back.  Even the room in which we sat with this doctor had terrible memories.  Only, instead of me sitting on that little plastic chair, the doctor sat there this time.  I wanted to run from the room screaming, ďNo, I donít want to do this again!Ē  That, sadly, was not a choice I had.
 
I read the Consent Forms today.  I listened carefully on Tuesday.  I remembered some of what the doctor said.  I asked questions.  I somehow remembered the dosage.  They were not sure of that.  1 x 10 to the 6th power.  My students in math class used to ask when they would ever need to know scientific notation.  I didnít have an answer then; I do now!  I wish I didnít!
 
The risks are significant!  After having read the forms, I have concluded that these are standard forms for all D.L.I. patients.  They DO NOT reflect patients like Rick who have had a Mini-Haplo transplant.  This is experimental.  I asked the doctor how successful these transplants (Mini-Haplo) have been.  Obviously, it has not been successful for Rick.  They are very successful.  They are now using the protocol in Seattle and other hospitals.  That is good and I am grateful for so many others who have this terminal, incurable disease.
 
Hopkins has performed five (counting Rick) of the D.L.I. procedures on Mini-Haplo patients (partial match related donor).  The first patient died.  The other four have shown no improvement.  The consent forms give statistics.  How can there be any statistics on a procedure that has yet to show any positive results?
 
Bottom line Ė Rick would have agreed to this.  His counts were rising, indicating that the disease was aggressively taking over very quickly.  I understand.  I just want to be given the facts Ė FOR HIS TYPE OF TRANSPLANT!  No, it would not have changed anything.  However, I would have felt like I was being treated like an informed, intelligent person.
 
Enough whining!  A funny story!!
 
Rick had his appointment today at Hahnemann.  We left the office at 5:30 PM.  Everyone was gone.  I was pushing him in a wheelchair.  He is too tired to even use the walker.  No, my right arm does not work at all.  I put the removable cast on before I left the house today.  I promised the kids that I could manage this.  I pushed him out to the hallway to wait for an elevator.  I said to him that I was going to sit on the bench until the elevator arrived.  This can take a long time at Hahnemann.  I had no sooner sat down than an elevator going down arrived.  Of course, it was the one at the far end of the hallway from us.  I jumped up and ran Ė pushing Rick Ė to the elevator.  The door was almost closed.  I shoved my left arm in between the doors.  They opened again.  What I forgot was Rick.  Since my right hand is incapable of doing anything, I had had to let go of the wheelchair.  Poor Rick was headed for a wall.  I always forget that I only have one hand.  Still forgetting poor Rick, I jumped into the elevator to push the button to hold the door open.  Some stupid doctor who was inside was saying something like it was a good thing he was there to push the button.  Heís the stupid, inconsiderate one.  I KNOW the doors open if you put your arm or leg between the doors (I do it all the time).  I always look outside the doors to see if someone is waiting when the elevator stops on a floor.  He didnít care.  My guess Ė he pushed the button to close the doors as soon as they opened on the 15th floor.  It would have taken him less time had he just taken a quick look to see if anyone was waiting!  Meanwhile, I had to go collect poor Rick.  He had stopped himself before he hit the wall.  I couldnít stop laughing.  Fortunately, Rick has a great sense of humor; he was also laughing.  He married me.  That shows an incredible sense of humor or just being crazy!    I prefer to think that he has a wonderful sense of humor.
 
We have received an overwhelming number of e-mails, cards, notes, and phone calls.  There are no words to express our feelings over this incredible out-pouring of love we have felt.  We are deeply in your debt for the hope and prayers that you have given.
 
I may have told you that I have been warned that this will now be an uphill battle for Rick.  I have never seen anyone fight with such courage and faith.  He and I (and our kids, my brothers & sister and spouses/ my father/ our extended family/ and friends) are all hopeful that this final decision will be the first of a long list of success stories.
 
We are hoping for amazing results. 
 
Until laterÖÖÖÖÖ.
 
Love,
Nance
 

September 28, 2008 Ė Sunday

Dear, dear Friends,

I promised myself that I would write one last update before we left for Baltimore. I have no idea what is ahead for us. So, until we return this will cover what I do know.

First, I need to apologize for all those unwritten thank-you notes for the benefit. Please forgive me. I really thought that I would have the time when we returned from Baltimore to look at the checks and thank everyone. I have never seen the copies of the checks. I still have boxes that remained unpacked from Baltimore. I apologize for all the notes that Rick and I planned to write to everyone who signed the guest book. Sadly, things never returned to normal here.

Second, I unfortunately read the first page of the web site; I cried. It took me two years to even be able to cry, so that is actually an accomplishment. A special thank you for the person who gave me that advice. I needed to learn how to cry again; it wasnít easy. It was on this page that I was reminded of the thank-you notes and the e-mail notes to everyone who signed the guest book. It was a reminder of his transplant in Baltimore, things I do not wish to remember, fears, and hopes. Although our hopes seem torn in shreds, we have had two years to celebrate.

Next, it was a reminder of the generosity of friends, family, and strangers who helped us financially and emotionally through an impossible situation. I re-read the entire guest book just the other day. I will never cease to be amazed at the friends, new and old, who helped us survive. We will be forever in your debt.

The tears are mixed. They are for the love I feel from all of you. Sadly, they are also for the fear of the unknown. Rick has fought with such courage since the decision to have this transplant in January 2006. Although I will not look back at the updates I wrote during that summer, the courage he displayed will always astonish me. I know it had to be horrific for him, but he never complained.

Now, the tears are also for what is almost like a second bone marrow transplant. We are both very scared of what this may do. We both are aware of the dangers. First, it may do nothing. Second, it could cause serious graft vs. host disease resulting in death. Third, we may be the first to experience a miracle; it could work. It is frightening to know that it is less than a week away. I cry for many reasons. Rick is still the strong one. He is the rock upon which I lean.

Rick is still very weak, tired, having great difficulty breathing, and in pain from the enlarged lymph nodes and spleen. Yes, for those of you who understand the medical field, I do know that the spleen is a large node; I listen and study. They have completed a multitude of tests on him. They can find no reason, aside from the disease progressing aggressively now, for the breathing problems.

Iím not sure what I wrote in my last update. I am being painfully honest when I tell you that I have never read an update once it is written. One would find it difficult for an English major not to re-read, edit, and re-write anything. That was never my purpose with my updates. In a sense they are my personal journals. Another thing of which I was reminded when I read the first page of the web site. I apologized for grammatical errors. I was just inviting you on our journey.

Rick, for the first time, has become discouraged. He has every right to be. It is just difficult for me to see this for the first time. We know this is our last hope for the miracle we know we need. For the first time he has said, "Iím scared." His fear is not so much of death as it is of leaving his family to fend for themselves. He wants so badly to watch his grandchildren grow up. He doesnít want to be forgotten by them. They have kept him laughing and given him the will to fight so hard. They have been his rock.

It has been difficult for us since our kids have gone back to work. Summer is over and they have returned to their jobs in education. Rides to the appointments at Hahnemann have been difficult to arrange. We usually spend a minimum of three to four days a week going to the hospital.

I want to thank some very special people. Jim Serock and Ray Leiser have both made themselves available for rides to the hospital. Never underestimate the strong bonds that are formed during school (even grade school!). Jimmy and Ray both graduated with Rick from Collingswood in 1966. Jack Wolfinger, another í66 graduate has been here to visit, encourage, and lift his spirits. Along with the others, he also calls to check in. The last update was sent to Rickís class. He has received so many wonderful e-mails from his high school friends. Sadly, we will be missing his high school class reunion this Saturday.

Doreen Clayton, thank you for sending the last update to our Collingswood class of 1967. He was overwhelmed by the out-pouring of love from our class. Susan P. Carol G., Denise D., Marilyn W., Linda N., Billy C., Bill & Mary S., Karen L., Michel M., DOREEN, - OK this list could go on for a long time. You have kept me (us) going. I knew that our class would write. I was afraid that he would think that something was wrong. Instead, he found great comfort in your notes.

Lloyd Jerred, thank you for everything. Your visits over the last several years have kept him sane. The lunches you brought were always wonderful! We are both grateful. Patty P. and Bart W., (students Somerdale) thanks for all the cards and notes. Thanks, Louise B, (teacher Somerdale Park School), for everything. D.J. (student Highland H.S.), thanks for being such a loyal follower of the updates. Michelle P. (former teacher Somerdale, the Buchannans (sp? former Somerdale students, parents, and extended family), we know you still follow the updates. J Sherry, (neighbor) thanks for all the encouragement, in spite of your own health concerns with Lou. Dave and Tammy (next door neighbors), thanks for moving the trashcans and for throwing the newspaper up on the porch!

Rene Wade, thanks for always being there. I always knew you were only a phone call away. We are truly grateful for you, John, Charlie, Joanne, and Kim.

I am truly sorry if I have failed to mention names of those who have surrounded us with love and given us the strength to continue. It is the one reason that I hesitated to actually give names. I apologize with all my heart if I neglected to mention your name. I know this week I will be thinking and sending poor Tiffany an addendum.

It must go without saying that our kids, their spouses, my ex-husband Bill and his wife Maureen, my sister, and my father have been there when we needed rides. My brothers and their spouses have been here for moral support, meals, and have come to visit when possible.

I know that this update screams of hopelessness, helplessness, fear, and finality. That is not entirely true. We are holding on tightly to hope. It is what we have left. Since I do not know what is ahead, I had hoped to thank people now. Should we face the worst of our fears, I am afraid that I will not remember to write some of this. I promise there will be more updates no matter what happens. I had to write this when my brain was still somewhat functional. Those times are few and far between! J

My faith has been tested. However, it is now the only thing I have left. Iíve lost control of something over which I never had any control. My life long belief that God answers prayer has been shattered. However, again it is all I have left. I have accepted that prayers are not always answered with the response you wanted. I am trying desperately to find peace with the time we have had. Rickís mini-transplant is Wednesday, October 8. For those of you who believe in the power of prayer, we are asking for those prayers for Rick and his doctors. Our children and Rick and I are immensely thankful for everyone who has been a part of our lives. We are grateful for those of you who have traveled this roller coaster journey with us. It is with great hope that I will be sending the next update with good news.

Until later (and I must believe there will be a GREAT later)ÖÖ

Love,

Nance

Addendum: See, I told you there would be thoughts after I had finished!

There is one funny story. Today itís funny; it wasnít when it happened. I had gone down to the cafeteria to buy lunch for us. Rick was receiving treatment. I carry my little purse in my sling. I balance the lunch tray (SOUP!) on my left arm. I managed to push the elevator button with my elbow. It stopped; I stepped on. It stopped at the next floor (the 3rd). A huge group of doctors (all males) packed the elevator. I was pushed to the back standing next to a young man who had gotten on at the 2nd floor with me. We were packed in like sardines. I had to go to the 15th floor. One doctor laughed and said, "Itís good no one is claustrophobic." I answered, somewhat irritated, "Would it matter? You certainly couldnít fall down in here!" I am claustrophobic. I had to push to make my way to the door at the 15th floor. They were all still on the elevator. By then I was hyperventilating. I stepped out of the elevator, leaned against the wall and slowly slid to the floor. One doctor did stop the doors from closing to ask if I was okay. Actually, I think most patients would have noticed that I WASNíT. I said, "I am claustrophobic." OK then, the elevator door closed and they left. I stayed on the floor until my breathing was normal and I thought I would be able to walk. Iím sure they must have been in a hurry to get somewhere important. Eventually someone on the oncology floor would find me. Maybe instead of wearing comfortable clothes and no make-up so spend the day in the hospital, I should get dressed up and wear some make-up. I have often wondered if someone would have actually gotten off the elevator to help then. Even I would have never left someone on the floor in an empty hallway. I may not be a doctor, but I would have gotten help! I have learned to get off an elevator if I see a group of idiots who are going to insist on cramming themselves into these small elevators. Screaming, "Stop," does get attention! J

Sunday September 21, 2008

Dear Friends,

This will be a short update. Rick just returned home from his second stay in the hospital within the last three weeks. He is weak, exhausted, in pain, spiking fevers, and having great difficulty breathing. The tests in the hospital have shed no light on the reasons for any of his problems.

When we see his doctor on Monday, we will ask her to call our transplant doctor at Hopkins. He has told me that he doesnít think he can wait very long. The lymph nodes, which were very small, are now increasing in size and number. Some are so big they are painful. Today he found small lumps all across the back of his head at his hairline.

He is not giving up; however he is losing the strength to fight too much more. I have never seen anyone fight as hard as he does. His faith remains strong and he still is optimistic. Sadly, for the first time he is now being realistic, too.

We thank you for all of your prayers, notes, calls, and words of encouragement. We will have them forever. They will always remind us of the friends who were there. Personally, I want to thank the former students and their parents who have written. Teaching was his love; it wasnít a job. Your words let him know that he had touched lives in a way that very few people have the opportunity to do. That was so important to him. He wanted to make a difference in the world and in a childís life. Your letters allowed him to know that he had been successful. Thank you!

His bone marrow biopsy is scheduled for Thursday. I do not think I will have any new information about that for a few weeks.

We are in the hospital so much that it is difficult to find the time to write the updates. I am doing my best; I promise.

I have no idea who still follows the updates. I do know that if you read them, this would be a wonderful time to send him a note. They mean so much to him.

Until laterÖÖÖÖÖ..

Love,

Nance

PS Our six-year old granddaughter Ellie fell and broke her wrist on Friday. I tried to explain that these were not the footsteps I had hoped she would follow. And so the saga continues. Yes, it is her right wrist and she is right-handed, too.

Wednesday September 3, 2008

Dear Friends,

I am sorry it has been so long since my last update. It seems that most of our days are spent in the hospital. The new protocol has been quite a challenge.

The doctor decided that it would be safer for Rick to receive three smaller infusions during the week. Originally, we thought he would have one infusion once a week for four consecutive weeks. The doctors agreed that the one dose would be too strong.

Rick had not fully recovered from his last round of Rituxan. Usually, he has two months without treatment before it begins again. This time he needed to start the new protocol two weeks after his last infusion.

He has been receiving the same dose of Rituxin that he received once a week for four weeks, only now he receives it three times a week. It has taken quite a toll on his health. He has missed several infusions due to various reasons. Mostly, his counts have been too low and he has needed blood transfusions. On those days we donít get back home before 10:00 PM or later. On several occasions he has needed platelets. Sometimes he is just too weak and sick.

Rick was also admitted to the hospital last Monday. He was spiking fevers. They ran tests. The final determination was Ė fevers of unknown origin (FUO). He was discharged Wednesday evening. He had an appointment on Thursday with our transplant doctor at Johns Hopkins in Baltimore. They did not want him to miss his appointment.

This is the new plan. The doctor wants him to make up all the missed doses of Rituxin. We were not sure what his decision was going to be about them. Two weeks after the last infusion, he will have a bone marrow biopsy done. That will show them if the Rituxin helped.

Mostly, the consensus is that this treatment is doing nothing. About two weeks ago our doctor explained that the leukemia is taking over. He has difficulty breathing because the blood that should be carrying oxygen to his body is too filled with the cancer cells. The transfusions help for several days.

Our doctor in Baltimore is having arrangements made for Rick to have a D.L.I. I explained this procedure in the last update. It will be scheduled in about eight weeks. If by some miracle the Rituxan has made a difference, the D.L.I. will be cancelled. We will need to stay in Baltimore for three days during the procedure.

So, you can see why I havenít had a chance to get to the computer. We spend a lot of time in the hospital. The hospital bags are always packed and ready to go. I keep them at the front door.

I think itís definitely time for a funny story. Recently, I know there have been several times he wanted to claim that I wasnít with him. Right now only one is coming to mind. Wait, no two. Trust me when I tell you it is frequently! J

Two weeks ago I needed to go to the pathology department to pick up Rickís bone marrow biopsy slides to take to Hopkins. The department is in the teaching building of the hospital. The woman gave me directions. I was to take the elevator from the 15th floor down to the main lobby. I would walk outside the hospital down to the next corner (15th and Vine). Walk down Vine Street to 16th and turn left. About half way down the block was the entrance to her building. These are really simple directions; Iím walking around the city block! However, the heat is unbearable. I am dressed in long pants, long-sleeved shirt, and a sweatshirt. The hospital is always freezing. Oh, donít forget my cast and sling on my right arm. All I can take off is the sweatshirt.

Out chemo nurse said this was crazy. The buildings are connected. She would take me to the back elevators. The doctors, nurses, students, and staff use these. She dropped me at the elevators and told me just to go down to the 5th floor and look for a sign for the pathology department. That sounded very simple.

Connie began racing back to the office. I heard her yelling as the elevators doors slowly closed, "Call me if you get lost." What did we do without cell phones?

When I pressed the number five on the elevator, I noticed that I was no longer on the 15th floor. Panic! Mental note Ė I need to go back to the 14th floor. There was no 15th floor on this elevator. The words kept ringing in my head, "Dorothy, youíre not in Kansas anymore."

What had happened? I hadnít paid attention when I was running after Connie. I vaguely remembered speeding down an incline. Could that have been an entire floor? Where had we turned? Where were my bread crumbs when I needed them? A permanent marker would have been better.

The elevator stopped at the 5th floor. I gingerly stepped out. I looked at the signs. They werenít that clear. I didnít dare wander too far from the elevators; they seemed to be my only safety net. I walked to the signs, stood under them, and glanced down both hallways. Left or right? Then, I saw someone. I walked to her and asked if she knew where the pathology office was and gave her the womanís name. I heard my name being called from inside the office. I was standing just outside the door. There were no signs; there were just doors to offices down a long hallway.

She was as sweet as could be. She had Rickís biopsy slides ready for me. All I needed to do was sign my name. That is not as simple as it sounds. I have learned how to use my left hand to guide the pen I am attempting to hold in my hand with the cast.

I thanked her and headed back to the elevators. Thank goodness they were only a few yards away. I remembered that I needed to get off at the 14th floor. This was the easy part. I exited the elevator. The doors closed behind me. I took a deep breath. I tried to remain calm. Why hadnít I paid attention getting to those elevators? My memory told me to turn right at the first hallway. Some things looked a little familiar Ė the ramp, the huge glass windows looking over the city. I reached the end of the ramp and went through the big doors. I felt like I had entered some horror movie. Where were my ruby red shoes when I needed them so badly? I want to go home!

I was standing in the middle of a small square room or big hallway. It was about 15í x 15í. Each wall had doors. Only one had a narrow window. Paper had been taped over that from the inside. That wasnít a good sign. I turned in circles. All of the doors looked the same. I didnít even know through which one I had entered. I would touch a door, panic, and back away. Iím not sure how long I was there; it felt like hours. All of a sudden one of the doors opened. There were Andrew and Agostine. They are two Fellows from our office. I squealed with relief and joy when I saw them. That was my door. I flew through the door, still not recognizing where I was. I just knew I was now on the correct track. I was in such a state of panic that I didnít even recognize the entrance to our doctorís office. It was directly in front of me when I stepped through that last door. I didnít recognize where I was until through my peripheral vision I saw the hallway to the hospital part of the 15th floor. I entered the office thinking, "Thereís no place like home." I had made it safely back.

I later learned that I had been lucky. The hallways we traveled are used for the cages with the animals used for experiments. There were no cages that day. Had there been, you would probably be hearing about how I am doing on the floor where they keep the patients with mental problems.

I think I have bored you enough. I will save the other story for next time.

We are both very tired. Today is Saturday, September 06, 2008. Rick had treatment on Tuesday and Friday. On Tuesday he also needed platelets. Yesterday, he needed platelets and blood. We had to have him admitted to the hospital. He left here at 10:30 in the morning. We arrived back home Ė in the pouring rain Ė around 1:00AM. This has become a normal routine for us. He usually needs the transfusions about every other week. They are long days. I need to take all the things we need to stay. I never know when there may be complications.

Thanks for all the prayers, cards, and e-mails. They keep us going. We are fortunate. In spite of everything, our home is always filled with lots of laughter, family, and grandchildren who fill our lives with joy. We are truly blessed!

Until laterÖÖÖÖ..

Love,

Nance

July 25, 2008 Ė Friday

In Loving Memory of Eddie Friberg

Beloved Classmate and Friend

Collingswood Class of 1967

Departed Our Circle of Friends July 24, 2008

Kind, Compassionate, Fun

May you have a grand time in Heaven with our other classmates who have gone before you. They will be waiting with open arms.

You Will Be Greatly Missed By All!

Dear Friends,

This has been a rather long, difficult week. Rick is still very tired. He had his regular appointment with his oncologist on Monday. She was not happy with the test results she saw. She was also concerned with his general malaise. She ran some more tests and also asked him if he would be willing to have a bone marrow biopsy done then.

It was a long day. We left for his appointment at 12:45 pm, and arrived back home at 6:00 pm. He has had 8 bone marrow biopsies done. The doctor we wanted was on a two-week vacation. We couldnít wait that long. This doctor was supposed to be good. He will never touch Rick again. I have never seen him in pain like he was this time. I always make sure that I have my face right in front of his face during the entire procedure. Rick does not complain. If I see him wince, I let the doctor know. This was the first time I have ever heard him scream out. There is no reason for the patient to feel that much pain.

Most of the test results from the biopsy will not be back for a few weeks. However, our oncologist called Rick several times this week. Some of the test results were conflicting. She wanted to speak to his transplant doctor at Hopkins before doing anything.

Today we heard what some of the plan will be. He has his regular appointment on Monday. At that time the doctor will make arrangements for Rick to begin another round of chemo (Rituxan) immediately. He has just finished his last round. This next round (one day a week for the next four weeks) will be a much stronger dose. By the time he is finished, they should have all the results from the bone marrow biopsy. That may shed some light on his new health problems.

The other option was a DLI (donor lymphocyte infusion). This is an infusion of the original donorís blood. They have only done four of these at Hopkins. They have not had any success with them. Since this is a dangerous option, the doctor felt the higher dose of Rituxan would be a better choice.

Finally, our transplant doctor wants to see him back at Hopkins in Baltimore. We were unclear about the time frame. We donít know whether our oncologist said within the next month or in a month. We will ask about that on Monday.

Rick is remaining very positive about all this information. His upbeat morale and never-ending faith always amaze me.

I will let you know more when I have new information.

Now I will tell you a funny story that Rick would delete if he could!

When we are at Hahnemann, we always see Fellows before we see our doctor. Itís a teaching hospital. We know all of the Fellows. On Monday we had told Eugene, our Fellow, that Rick had had difficulty breathing. Rick had actually mentioned to me the day before our visit that he was going to ask about keeping oxygen in the house for him. When our doctor came back with Eugene, she asked him to check Rickís oxygen levels. She told him she wanted him to walk Rick. He hooked the little gadget to Rickís finger and left the exam room for their walk.

I sat in the exam room thinking. This was a dťjŗ vu. I just couldnít bring back the memory. Then it hit. I burst out laughing. We watch a TV show called "Bones." This is not a bad show. Itís like watching "ER" or "Greyís Anatomy." However, in one episode the clues to a murder victimís death led them to this "unusual" place. I use the word unusual because I donít know what else to call it. Men would pay to stay there and be treated like horses by the women. I remember watching the women walking these men who were pretending to be horses. I couldnít get the vision out of my head. I also couldnít stop laughing!

Rick and Eugene finally returned to the exam room only to find me almost in tears from laughing so hard. I told them why I was laughing. Poor Eugene just wanted to get out of the room. I was trying to make him understand that this is a normal weekly TV show like "ER." He was shaking his head muttering something like, "Iím not really into that kind of thing." He was gone before I could explain anymore.

Poor Rick was just sitting on the exam table. I think he was also muttering to himself as I followed poor Eugene to the door trying to explain more. Rick just looked at me with this pained expression on his face. He told me that this is where "normal" people donít say these things. Iíve never ever claimed to be normal. Besides, it was really funny.

Our doctor came back to tell us that his oxygen levels were fine. She had to leave for a meeting; we needed to wait for the bone marrow biopsy procedure. Her office was directly across from our exam room. She was in her office getting her things together and talking to us at the same time. I walked into her office to tell her the Eugene story. Of course, the story didnít work unless she knew the "Bones" episode. I was still laughing. She found it very funny.

I walked back into the exam room to find Rick with the same pained expression on his face. It apparently wasnít bad enough I had already told the story once, I told it a second time. One would think he would be used to me by now. I still think itís funny. Oh, of course I will be telling his chemo nurse when he starts his Rituxan. I would warn him, but thatís not as much fun!

I do have another funny story. However, typing with a few fingers on my left hand is tiring. I will save it for my next update.

Once again, we thank all of you for your kind thoughts, cards, e-mails, and prayers. They are greatly appreciated.

Until laterÖÖÖÖÖÖÖ

Love,

Nance

This is part of a letter I wrote to Eddieís daughter Kim. Following the excerpt from the letter is the obituary in Sundayís (July 27, 2008) Courier-Post. For Kim:

I will treasure our high school memories, the famous "Big Three" (Eddie Friberg, Eddy Weldon, and David Cordier in choir), Algebra II class with Mr. Edinger (we heard all the recaps of the football games - that was much more important to Mr. Edinger than math!), the fun after we graduated, and all the good times at the formal and informal reunions.  I will miss him very much. 

Your Dad was a man with a heart of gold.  He was a good friend.  He was loved by our class and will be missed by all.  I will choose to see him above us with our other friends who will be waiting to greet him with open arms.  There they are all healthy and happy.  There is only peace, forgiveness, and unconditional love in Heaven.

May you find comfort in the words from your Dad's dear friends.  May you find peace in knowing that he is in a wonderful place, his health has been restored, and he is probably already being voted captain of the football team!  Go Collingswood Angels!

FRIBERG, EDWIN F., JR.
Suddenly on July 24, 2008, of Collingswood, NJ. Age 59 years.
Beloved father of Kimberly (Jonathan) Bird of Collingswood, NJ. Loving son of Margaret (nee Jack) Friberg and the late Edwin F. Friberg, Sr. Dear brother of Margaret McDonnell and Cindy (Scott) Heckler.
Ed was a 1967 graduate of Collingswood High School and member of the Courier-Post All-South Jersey football teams in 1965 and 1966. He co-captained the 1966 team to a 9-0 record and lettered in baseball and basketball. In 1999, he was inducted into the Collingswood High School Athletic Hall of Fame. Ed was also a 1971 graduate of Trenton State College where he played football.
A 25 year employee with Camden County Board of Social Services, Ed also taught and coached several sports at Collingswood High School.
Relatives and friends are invited to attend his viewing Monday Evening 7 to 9 PM at the FOSTER-WARNE FUNERAL HOME, Haddon & Lees Aves., Collings-wood, NJ. Funeral service Tuesday 10 AM at the funeral home. Interment Harleigh Cemetery, Camden, NJ.
Due to Ed's great love of Little League, the family requests in lieu of flowers, contributions be made in his name to Collingswood Little League c/o 900 Haddon Ave., Suite 206, Collingswood, NJ 08108.

July 12, 2008 Ė Saturday

Time seems to stand still and fly by at the same time. You should never have two invalids living on their own.

Rick completed his last chemo treatment on Thursday. He thinks he has had eight rounds since his transplant. He is getting tired.

He sees his oncologist on July 21. During that appointment she will decide on dates for his tests. He doesnít think they want the tests done too soon after his treatment. All he wants right now is to feel better; I canít blame him.

He assumes that although his transplant was part of a trial at Hopkins, his need for treatment has taken him out of the protocol. They are there if we want to see them.

We are not looking forward to seeing the new test results. If things were changing for the better that would be a different story. That would give us hope again.

We researched Rickís type of leukemia using everything available to us. Sometimes I felt like I was studying for med school. I stopped after the transplant because there was nothing else. He had become the research. I donít read about it now because he would be exempt from almost anything they found. This was one reason we held off on treatment for so long. You only get one choice. Usually, patients who have been through a transplant and many rounds of treatment do not meet the criteria for something new.

I did most of my research with the help of a woman named Chaya. She is not a medical doctor. However, she is brilliant; she has numerous doctorates; she speaks directly to the top CLL (type of leukemia Rick has) specialists in the country; these doctors have the greatest respect for her; she translates their medical terminology into laymanís terms; her husband has CLL. For anyone interested, this is the address for her credentials and commitment to those of us so grateful for her. http://www.clltopics.org/AU/CRVCred.htm

This will be an oversimplification of what she does. She gave her "patients" fictitious names. Each had a different type of CLL. She did a magnificent job. You felt like you knew the people.

It was only a short time ago that she announced that her husband was going to need treatment. They would be moving to Texas for the transplant. She had promised to maintain a journal on-line so her readers could be with them. I told you she was truly committed to this crusade. It was also at this time that we all learned that her husband was the fictional patient Harvey.

Rick read me a few of her entries. They were too painful for me. They were bringing back Baltimore. I have never read any of my updates. Baltimore is buried deep within the recesses of my mind. I donít want to remember anything. I never want to go back!

Chayaís husband was also having an experimental bone marrow transplant. It was different than Rickís transplant. She couldnít write as often as she had planned. There is no free time while living in a new city to receive a transplant. They were alone. I was able to write because Tiffany was living with us. Chaya was also facing the same difficulties we faced. I didnít expect that. She also writes with humor in the face of exhaustion, stress, and life and death situations. I was reminded of all the funny things in Baltimore. However, even those memories evoked pain for me.

"Harveyís" transplant went very well. The one core cell transplant had taken over. Success! I was so excited for them and other possible patients. Sadly, it was not long after the transplant that her husband developed complications and passed away very quickly.

Rick had stopped reading her journal entries to me because they made me cry. He never told me about her husband. I happened to be looking for something in our OLD aol mail when I noticed this in the subject line: DO NOT GO GENTLE INTO THAT GOOD NIGHT Since it is one of my favorite poems, I opened the e-mail. It was about Chayaís husband.

Chaya will be back doing her research soon. She will never give up her fight. She is a very special person.

I need to send this to Tiffany so she can post it before she leaves for Germany. There are many funny stories that I could tell you about how I have learned to manage without the use of my hands. Unfortunately, typing with a couple of fingers on my left hand is very tiring. Iíll save them for later. I saw the orthopedic doctor yesterday. I think it may be several months before I have the use of my right hand. I am allowed to start physical therapy on my left hand now. That would be really great if I were left-handed. The doctor doesnít even want to see me for another three weeks for the fractured wrist.

Thank you for all of your cards, letters, prayers, and kind words and thoughts. They keep our spirits soaring.

Until laterÖÖÖÖÖÖ..

Love,

Nance

July 4, 2008 Ė Friday

Dear Friends,

Let me first begin with my bad new. I fell two weeks ago. I fractured my right wrist. Yes, I am right-handed. I have a beautiful, neon pink permanent cast on it. My fingers do stick out. My hand is covered and it reaches to my elbow. My left wrist is badly sprained. It has a removable immoblizer on it. The good news is that I have gotten fairly good on the keyboard with the fingers on my left hand. When the cast is finally removed, I will need physical therapy. So, please forgive the numerous mistakes I may make with my typing.

Tiffany, Fran, and Ellie will be gone for a week in July. I wanted to post this update before she left.

She has had great difficulty with our update postings. Sometimes it has taken her days to get the update posted. The last time I actually posted a short note in our guest book.

Rick has been in treatment during these last three weeks. Next Thursday is his last treatment for this round. He will have two months off before it begins again.

Unfortunately, he is just about to begin all the tests and immunizations for his two-year check-up. His transplant date was July 7, 2006. The good news is that they are allowing us to have all the tests done here at Hahnemann in Philadelphia. I will let you know how things go.

 

Wednesday June 4, 2008 -

Dear Friends,

I apologize; this update will be very short. I've just had some medical procedures done and am not feeling very well.

We received Rick's chimerism test results. His own blood is now 40% of his blood. If I remember correctly, this is about double from January. Since his other counts remain stable and he has no major tumors in his lymph nodes, the regimen will remain the same. He will begin a new round of Rituxan in a few weeks. They allowed him to hold it off a few weeks due to my surgery.

I will try to tell you more when I have some strength back and feel better. We are asking if his two-year check up can be done in Philadelphia. Neither of us is in any condition to survive a trip to Baltimore. It is only about four weeks away.

Until laterÖÖÖÖÖ

Love,
Nance

Wednesday May 21, 2008 -

Dear Friends,

Tomorrow is Rick's birthday. We have never been big on birthdays, so it will be a quiet celebration. This last Sunday was our 24th wedding anniversary. That was also a quiet celebration. We had take-out for dinner - Rick's favorite, candlelight, and music. We danced after dinner. No, we didn't attempt our favorite country or the jitterbug, but it was wonderful.

Rick had his blood test done on last Monday. It should probably take about two weeks before we get the results. This should tell us how much of his blood is his and how much is donor blood. Obviously, this is a long, stressful waiting period! I'll let you know when we get the results.

Rick is also asking about his tests for July. July 7 will be the two-year anniversary of his transplant. There are several tests and a bone marrow biopsy. We are hoping that they may let us do everything at Hahnemann in Philadelphia. Neither of us could possibly drive to Baltimore. It is a very long day. We need to make all of the appointments in the afternoon. Then, we need to leave early in the morning to prepare for any accidents or traffic delays on I-95. I think our longest wait has been three hours in one spot. If there are no delays, we end up sitting in the waiting room for hours until his appointment. We arrive home that evening. Can you tell that we have done this many times?

It may have been two years, but we are slowly getting our lives back together. I finally had our wedding pictures done - they look like oil on canvas - and hung. Yes, I know! Twenty-four years later???? I did the traditional one and the other one I call, "The Kiss." That just drives the kids crazy!

I finally ALMOST finished painting the foyer. I started with the same paint in the living room Easter of 2006. It is really just about finished.

We hung most of the things back on the living room walls. They have been void of anything since I began painting in 2006.

No, I still haven't been able to find the time to unpack several of the bags from our stay in Baltimore two years ago. I don't think I want to deal with anything that reminds me of that time. That would probably be the same reason that neither Rick nor I have ever read an update that I have written. Some dayÖÖÖ

Love,
Nance

Friday April 25, 2008 

Rick saw the dermatologist yesterday. She performed a biopsy on the rash on his face. She is looking for graft vs. host disease. She explained that the results could be inconclusive. We are painfully aware of that. They have never been able to positively identify any of the biopsies as graft vs. host. And, it cannot be ruled out.

He also had several other spots that were suspicious. However, due to new insurance rules, the doctor may not perform two procedures during the same visit. You must make another visit and have the next biopsy done in a week or two. The doctor must make the decision as to which area she must biopsy first. In other words, which could be more deadly. We will now need to return to the dermatologist for another appointment. I'm not sure if the other places can be done at the same time, or if we will need to make a third appointment. It will be at least ten days to two weeks before we receive the results. Then, it will be a few more weeks for us to wait for results on the next biopsy. I know out doctor is very frustrated.

I drove the car for the first time since I was sick. I actually drove to Philadelphia to Rick's doctor appointment on Monday. I think Rick was a little nervous, but I thought I did just fine. I don't think he was prepared for my u-turn on Broadway. However, I decided that I had put my turn signal on and I was determined to make the turn. It worked. I felt a little like the woman in "Fried Green Tomatoes" when she pulls into the parking space the young girl was about to take. I think I have the correct movie. Anyhow, she shouts something like she is older and has more insurance, so she doesn't care. Yes, I think that is where I am. Mostly, I just don't care. I'm making this turn!

One of the times when we were getting on the elevator in Hahnemann, a women mentioned how much she liked the color I was wearing. It had been a long day and I was quite tired. She asked what it was called. I couldn't come up with a name. All of a sudden I heard Rick say, 'I think it's called Dusty Rose." I was so proud of him. What a man!! In an elevator filled with people he announces that he recognizes the color Dusty Rose. Do you think he has lived with me too long? That is true love and total security!

I apologize for not having funny stories in this update. Usually I can remember so many crazy things that have happened. I do believe that we have had those funny things still going on. I think, however, that there are just more medical issues going on than we normally have. I promise to do better next time.

I have started to see a hypnotist for my phobia. There are some funny stories with this new adventure. I will save them for when I am in better spirits. By the way, he is good and it is working!

The good news is that Rick remains optimistic and in great spirits. Many of us in the family find ourselves relying on his strength.

Until laterÖÖÖ..

Love,
Nance

Wednesday April 22, 2008 

Dear Friends,

Rick had his check-up with his oncologist on Monday. His counts are still holding stable. That is good news. He also does not need to go back for three weeks! It's been a long time since he has been given that much time off between appointments.

He does have a slight rash on both sides of his face. His skin appears to be sunburned. It runs from just above his eyebrow down to his neck. I have watched it slowly spread from just a little on one side of his face to where it is now. My first concern is always graft vs. host. He has an appointment with the dermatologist tomorrow. His oncologist would like to know what she thinks. Also, this is the third time he has developed this same rash. Each time it has disappeared on its own.

At his next visit, the doctor will run a chimerism (sp.?) test. This is a blood test that should let us know how much of Rick's blood is donor and how much is his own blood. This will be a stressful waiting period.

It is very difficult to believe that we are quickly approaching Rick's two-year mark for his transplant - July 7, 2008!

We are both hoping that our transplant doctor at Johns Hopkins will allow his check-up to take place at Hahnemann in Philadelphia. Our transplant doctor at Hopkins is very comfortable with our doctor in Philadelphia. We see Dr. Crilley at I. Brodsky Associates in Hahnemann. Dr. Brodsky's son was one of Rick's transplant doctors at Hopkins. They have a very close working relationship.

Unfortunately, we do not know if protocol will dictate that the check-up take place at Hopkins. It is a long drive for both of us. Rick prefers to drive down and come home the same day. He wants to sleep in his own bed.

It's a long day at the hospital. There are several tests. The most difficult is a bone marrow biopsy. We need to leave early in the morning. One can never trust I-95. We always need to allow time for accidents and traffic jams. We've sat for an hour in one place. So, the plan is that we leave early and do not have traffic problems. Then, the result is that we sit for several hours at the hospital. We listen to lots of music and read. Sitting for hours in hospitals has become a way of life for us. We rarely even think about it.

The bone marrow biopsy will give us a better idea of how the transplant is taking. It shows how much of the blood in the marrow is still Rick's and how much is from the donor.

Rick's knee is slowly getting better. For those of you who do not remember, he tripped up one step when he was getting his morning paper. The orthopaedic doctor saw him about a week ago. He was not unhappy with the progress. He wanted to wait another four weeks before doing another x-ray. He believed that by then it would be much better. He can walk; he just has difficulty on steps.

We each saw the ophthalmologist last week. Rick has been warned about developing cataracts from the radiation. Rick's eyes were good! I, on the other hand, had the beginning of a cataract on my right eye. With this news, the tears were already swelling in my eyes. I'd totally forgotten asking about trying contacts. Rick tried to explain that I was upset. The doctor was completely confused. This was good news. I didn't have any SERIOUS problems. This could be corrected very easily with surgery. I just sat quietly crying. I am needle phobic. There will be no surgery. My understanding is that this is done while you are awake! That, I am sadly afraid, is totally impossible. His good news was, "It could be ten years before you need surgery." I think the important word was "could." I only heard that in about ten years I will be blind in my right eye.

Blindness runs in my family. My mother's uncle and his grandson were born blind. My mother became blind due to problems from her diabetes. My older brother is facing the same problems. Blindness forced him to retire long before he had planned. My younger brother will probably deal with the same condition.

I have steeled myself for this sentence for many, many years. Rick used to laugh at me. I would be looking at something I found quite beautiful. Then I would close my eyes. He would ask what I was doing. I would explain that I was burning the picture in my memory. Some day when I was blind, I would be able to still see the beauty in the world. I have always been preparing to be blind. I cannot do that surgery. Last week I was finally given a time frame.

Friday April 4, 2008

Dear Friends,

It is 4:30AM and I can't sleep. I think it is time for an update. I never finished the last one. It seems like a lifetime ago that I was strong enough to write.

I'm sorry it has been so long. Rick is doing much better. He saw a new doctor for the spot on his lungs. He placed him on an antibiotic and the cough is almost gone. He will have another CT scan on Wednesday to check the spot.

This week will be busy. On Monday Rick has his normal appointment with his oncologist. He will also have his treatment of IVIG. That will be several hours at Hahnemann. Tuesday he has an appointment with the orthopaedic doctor about his knee. He is still in a lot of pain trying to walk up and down steps. Wednesday he has his CT scan. The scan doesn't take long. However, we are usually there for at least an hour or two - waiting. The orthopaedic doctor will want another x-ray of his knee. That will be done on Wednesday. That will add another hour or two onto the day. When they x-rayed his knee the last time, he was the only patient and it took over an hour. It's their special office for walk-ins from the doctors at Hahnemann. On Thursday we both have appointments to have our eyes examined. We are both long overdue - years. Rick will need to be watched for cataracts from the transplant. I just can't see! Friday, I hope to rest!

Jason had to take him to his appointments last week. I was still too weak from the virus I had. We are very fortunate to have so much support. They are long waits in the doctor's offices. The two of them get to discuss sports. I try to fill in at home, but usually the best I can do is listen. I try to pay attention. Once in a while, I can actually add something intelligent to the discussion. That really surprises Rick. He is also very appreciative that I try!

The virus I had really knocked me down. I am slowly recovering. I am afraid that it will take a while. I wasn't all that strong when it hit. I am operating on a very low battery. Wouldn't it be nice if we came with batteries? I'm slowing down a little; could I please pick up my replacement batteries?

I do have good news. I took down the Christmas tree. Neither of us had the energy to tackle the tree. I decorated it with red lights and valentine things for February. Between the lights on the tree and the red hearts around the doorways in the living room, I don't want to think what our house looked like from the outside.

In March I decorated for St. Patrick's Day. I hung the green Shamrock light around the living room doorways. I didn't have the energy to put the green lights on the tree.

Easter was too close to St. Patrick's Day. My goal had been to take the St. Patty's Day decorations down right after the 17th. Then I would immediately decorate for Easter. That was a good goal.

Unfortunately, I was too sick and weak to care. There was no dinner for the family on St. Patty's Day. No one had come near the house since I had become ill. I was too contagious. It did look festive for Rick and me.

Easter arrived. The kids are too young to care about St. Patty's Day. However, the Easter Bunny waits for no one! I had been fever free for a week before Easter. The grand-kids would not be disappointed.

Friday I put away all the green. Saturday I hung the pastel Easter Egg lights around all the doorways. I filled and hid 120 plastic eggs. This event requires perfect timing. The kids must arrive at the same time. The eggs cannot be hidden until they are about to arrive. Baby, our rescue greyhound, doesn't know they aren't her treats. We were tired, but the kids had Easter. They didn't even notice the tree was gone!

This week I even took down our small tree in the dining room. That has been up since Christmas of 2007. It sits on our serving table and only has pictures of the kids from each Christmas. This tree has also been decorated for each holiday. Yes, it was filled with Easter decorations. I actually had to make a tree topper for Easter. This tree they missed!!

Are any of you familiar with the painter Thomas Kinkade? Rick and I are fascinated with his paintings. There used to be a Kinkade gallery in Baltimore. It was located in one of the malls in the Inner Harbor. On several occasions we had to stay in Baltimore for a few days when Rick had visits. We would spend the days in the gallery and Barnes and Noble. We loved watching the sunrise and sunset with the turn of a switch on a dimmer light. The paintings came to life. We studied his paintings and him. We always said if we ever had money, we would buy an original Kinkade. The most difficult decision was deciding on which one.

The gallery closed years ago. We were left with the bookstore. Fortunately, most of our trips to Baltimore were only for the day. We were never near the Inner Harbor. Hopkins is a distance from the harbor.

Right before I became sick I found a painting - oil on canvas - in the window of one of the stores in our own little downtown. I think the name of the store is Bavarian. The store was closed so I could only see the painting complete with glare on the window and the inside of the store in darkness. It looked just like a Kinkade. Best of all, it had a big "Clearance" sticker on the frame. We were there the next day. I knew right where it would hang.

We have a small family room connected to our kitchen. It is on the north side of the house. The room is small and dark. The walls are all natural knotty pine. I believe it is Rick's favorite room. His comfortable recliner is there, the TV, and his laptop. We live mostly in this small room. The painting would hang on the wall directly opposite Rick's chair. There was already a spot light on the ceiling in the perfect place.

The painting is of a house or chapel along side of a stream. The windows make me think it is a chapel. There are flowers around the chapel and along the stream. It is located in the woods. We don't need the spot light. For some unknown reason, the lights in the chapel are always lit. The dew on the flowers glistens. The scene comes to life all on its own. The time of day is of no importance. The painting is always alive, peaceful, and serene. It has brought us much unexpected joy.

I also surprised Rick with new wedding pictures. I had two of our wedding pictures done on canvas. I'm not sure how it is done, but it is not expensive. They were even able to remove the mark on Rick's nose from his glasses. He had taken them off to kiss me. I had the classic wedding picture, and The Kiss. That is my personal favorite. It only took me twenty-five years to have our wedding picture framed. If I had had the classic wedding picture framed twenty-five years ago, I wouldn't have The Kiss! It was worth the wait. He did a beautiful job with the pictures; we love them!

It is difficult to believe that it is April. We are only about two months away from Rick's two-year anniversary of his transplant. I guess we will be back in Baltimore in July for that. I didn't mind the trips as much when I could drive. It's a very long day for someone to have to drive us and sit around for hours. Even if the weather is nice, the harbor is packed with visitors. The kids love the Aquarium, but there is usually a long wait just to get in. The few places that are small kid friendly are all packed.

Last week when Jason went to Rick's appointment with him, Rick asked the doctor what the long-range plan was. They will continue with the Rituxan every couple of months. They will continue with the IVIG. The IVIG helps to build up his immune system. Hopefully, this will work for several years. By then, we will hope that they have found something new for the CLL. Or, maybe the transplant will start working. Or, maybe they will have perfected the next option. That is the infusion of the donor's certain cells. Right now they don't know how much to give the patient. At least he knows they have a plan.

We still live on a day-to-day basis. Only last Thursday I was re-packing all of our hospital bags. We had called the doctor and knew that we may be heading to the hospital. We made it through the night and he was able to just go to the doctor the next day. We take nothing for granted. We have been forced to slow down. Life in the slow lane is wonderful. You notice the good things. You appreciate the small things. You recognize the important things.

I also have a goal. Some day I want to dance again! We may have forgotten how, but it is a dream we both are hoping to accomplish. Everyone needs a dream!

Oops, this is long. Sorry this is what happens when I can't sleep. Any of you who were with my updates during the transplant are painfully aware of how long I can write!

Once again I want to thank you all for your thoughts, prayers, support, letters, e-mails, and calls. We are surrounded with incredible friends. For that we are most grateful.

Until laterÖÖÖ..

Love,
Nanc

Wednesday March 5, 2008 - (started)

Dear Friends,

It has been quite the week! However, we have still landed on our feet. Considering the events that have occurred, that is probably a poor choice of words to use.

Rick fell last Sunday morning. He had gone out front to get the paper. The paper was on the sidewalk. There is only one step at the end of our front walk. He misjudged the height of the step and fell on his knee. His knee was skinned and it began swelling. Since he was still able to walk on it, I decided that the last place I wanted him or me to be was the ER on a Sunday. We already had an appointment scheduled for his treatment at Hahnemann on Monday. It would wait.

Sunday evening Rick began to spike a fever. I gave him Tylenol and placed ice packs on him. It brought down the fever. We later learned from the doctor that the injury to his knee could have caused the fever. Bottom line: another trip to the ER avoided!

Here is some exciting news. I drove to the hospital on Monday. Two weeks ago I had made a short trip to the store. I haven't driven in almost two years. Well, there were the few times in Baltimore. I think I hit the wall of the entrance to our apartment building twice. I got lost once - about three blocks from our apartment. The worst was the time I left Rick alone in the car while Tiff and I ran into the drug store to pick up her husband's prescription. He had had minor surgery that day and had been sedated. He was not supposed to drive. This was on the way home from the surgery. Somehow, I left Rick alone in the car in a no parking zone. He had to drive. Long story short - I ended up outside looking for him. I eventually ended up in the driver's seat. After that I was banned from the car. For my safety and the safety of others, I have remained off the road.

I am finally feeling strong enough to drive again. I also found out about valet parking at Hahnemann. I could do that. The most difficult part was trying to get the wheel chair in the back of the van. I still have the bruises from that, but I did it.

We arrived at the hospital with absolutely no incidents, not even a close call. I handed the car over to the valet attendant. We signed in and waited for an elevator. Life is good. I can drive (not too far) and Hahnemann has valet parking.

The following week Rick was able to go to the hospital on crutches. That was much easier.

I am going to ask Tiff to send this. I have picked up a virus. As soon as I am able, I will finish this update and tell you where we are in treatment.

Until laterÖÖ

Love,
Nance

Sunday February 24, 2008

Dear Friends,

This is the first of two updates. Immediately after this is an update I wrote on February 15 - just in case you wanted to read them in order. Unfortunately, Tiffany has been too ill to post the last update. She is the only one who can do this. I am hoping that she will be able to get this one (actually, now two) posted for me.

First, I think I should address Tiffany's problems. I would love to tell you what is wrong, but no one seems to know. She has been dealing with a debilitating migraine for weeks. She has developed a severe pain in her left shoulder blade. The broken toe isn't even worth mentioning; that is so minor now. Her doctor has scheduled her for an MRI and a stress test. She has already seen a neurologist (who was an idiot!) and the cardiologist. However, before she could get any of the tests done, she ended up being taken by ambulance to this hospital last Monday. We thought she was having a heart attack. It wasn't. They couldn't get her out of the hospital fast enough. She was obviously extremely sick and in great pain; I don't think they cared. They discharged her; however, it took a while before she could stop getting sick long enough to get off the bed. For any of you living in the area, that was Cooper Hospital. Wonderful care!! I do believe our vet would have shown more compassion. Actually, I know he would have!

She had her back x-rayed on Friday. Her family doctor was sure she had broken a rib in her back. Nope!

So, we have no idea what is causing all the problems. I am hoping that we soon find a doctor who can diagnose her. She can barely move and any type of light or noise is very painful. Scheduling the tests and trying to make appointments takes forever. You could die before they can fit you for a test or appointment.

I did try to post a note on our guest book. I can't even do that. I would love to know how you all write to us. I actually e-mailed Karen Lacy to see if she could write a note in the guest book so everyone would understand why I haven't written. I have; I just can't get it posted.

Second, Rick is back in treatment. I think this may be his second or third Monday of treatment. Jason had to take him and stay with him one week. I was too sick. Last Monday I had to leave him by himself. I had Ellie to take care of. Tiff and her husband were on their way to the hospital.

We are so fortunate to have found Dr. Pamela Crilley at Hahnemann Hospital. He has his treatment right in the office. Our nurse Connie is truly an angel. I knew he would be in good hands and I didn't need to worry. Connie would make him as comfortable as I would. The only difference would be that she would still have to work while she was also doing my job. I cannot imagine what we would do without her. Connie, just like Tiffany, is dealing with severe migraines. I have no idea how she comes to work in that much pain. She has had one for several weeks now. No one has been able to help her yet either.

We have all managed to avoid the flu so far. When Tiffany and Fran were in the hospital I insisted that they wear masks and constantly use the hand sanitizer I had Jason take to them. They didn't have the flu going in, and I couldn't imagine them catching it in the hospital and bringing it home!

Tiffany did find it amusing that she was lying on a gurney in the hospital possibly having a heart attack and telling them that she had to wear the mask so she didn't get sick.

When I have any news on Tiff, I will let you know. I hope. I will keep you posted on Rick's health. I promise to find out how to sign the guest book. If you don't see an update for a while, please look at "View the Guest Book." I may have to send short notes through that until Tiff is better.

I promise I haven't deserted you. Please don't leave us. My updates have become my therapy and my only source of keeping everyone aware of Rick's progress. Sometimes I feel like it is my only connection to the outside world. Most of our excursions are to the hospital for appointments or to be admitted. Sometimes we go to the drugstore. J

Until laterÖÖÖ

 

Love,
Nance

Friday February 15, 2008

Dear Friends,

Happy belated Valentine's Day. It was wonderful for us. It was a holiday and we were home! J

Rick has completed several rounds of IVIG (immunoglobulin - I promise to someday learn to spell that word!). He has done quite well with it.

Today he is not feeling very well. Of course he isn't. It's Friday and we just had a holiday. We have a call in to the doctor. He has no fever, so I don't think they will want him to go in for an appointment. However, it does alert them to what is happening. He will also be told who is on call this weekend and which Fellow. That always makes us both feel better. We just like to know to whom we will be speaking if we need to call.

He will begin his Rituxan (think I've been spelling this incorrectly) on Monday. He will have infusions for the next four Mondays. He will still have the IVIG during the treatments. I believe this is just a routine that he will continue on every three or four months.

He has discussed some other options with our doctor. She is not against them, but he would most likely be removed from the trial in which he is a patient. We are not ready to do that. He may no longer be considered for the next treatment in the trial. We are not prepared to give up that decision just yet.

I think I have mentioned that if the Rituxan no longer seems to be helping, he would most likely be a candidate for another infusion of his donor's blood. I am afraid to say that this is very dangerous. Since this is so new, they don't have a safe dose. They would be guessing. Our hope is that the Rituxan will do the job until the dosage for the other infusion is safer.

With few exceptions, Rick is being kept inside the house. The flu season is bad. It seems like everyone is sick with something. I won't take chances with him. He still has his good and not-so-good days. He also tires easily. As always his emotional optimism and courage are amazing.

Baby, our rescue greyhound, is constantly a source of great joy for us. She makes us laugh all the time. She loves her walks. When we are both feeling well, we both take her. Most of the time we take turns. One of us is usually too sick or weak to walk.

Baby voted in the Primary with us. We took our son-in-law only because we were voting in different ones ;) We only have to walk two blocks to vote. It was cold and we were tired. Poor Fran couldn't believe it when we loaded Baby in the car and drove down the street - not the driving - taking Baby. He was more incredulous when I walked inside the library (where we all vote) with her. She is quiet, very well behaved, friendly, and never approaches anyone. However, if anyone - adult male or female, child, dog - approaches her, she stands quite still and delights in their attention. She does not lick or jump. She just stands still. I had planned to take turns holding her leash while Rick and I each voted. Unfortunately, the woman in front of us was filling out papers for changing her name or something. It took forever! Fran was in and out quickly. Without even thinking I handed Fran her leash. Tiffany later told us he didn't know what to do. All of a sudden he is standing in a room now filled with people holding the leash to this huge, and probably not permitted in the room, dog. He was outside in the foyer before I knew what had happened.

Baby is my therapy dog. There have been times when I have had to lean on her while we walked. I would have been to weak to walk on my own. I think she is now a therapy dog for both of us. I would never have believed that this 70+ pound, strong muscular, very tall, and obviously very fast (she won lots of races before we rescued her) dog could fill my heart with so much love! Rick would have sworn that it would have never happened to him! She brings so much laughter into our home.

Our kids and grandkids have all taken turns being sick for the last several weeks. Normally we see them all the time. We miss them terribly. They fill the house with laughter and much noise. Baby manages to help fill that void. She has also become a part of "the gang" when they are here. If they are running around the house, Baby is at the end of the line. If they are playing in the living room, she must be in the middle of them.

I decorated the house for Valentine's Day. It started when I realized that the Christmas tree wasn't coming down for a while. It's covered in red lights. The foyer, living room, and dining room are filled with decorations. They are also covered with frosted red heart lights. I can only imagine what people think when at night they pass this house glowing in red lights. The decorations will stay up until all the kids can have our candlelight Valentine's dinner. I do hope that is soon. I am already getting my things together for St. Patrick's Day.

I do have a problem. Easter is so close to St. Patrick's Day. Rick suggested that I decorate one side of the tree for St. Patrick's Day and the other side for Easter. Then we could just turn the tree around. So far I haven't come up with a better solution. My girlfriend already gave me ideas for my summer theme. This just may be the tree that never comes down! There are just so many great holidays. I am also receiving requests for family birthday themes. It's become a fun project!

I will keep you posted on Rick's progress with the approaching treatments.

As always we are so grateful for your prayers, thoughts, letters, cards, e-mails, and wonderful words of encouragement. Please always feel free to say "hi" in the guest book. We often wonder who is still reading.

Until laterÖÖ..

Love,
Nance

Friday January 18, 2008 

Dear Friends,

These updates seem to be more frequent. Am I writing more often? Is there more news than usual? In order to answer these and other questions, I would have to actually go back and look at the updates. We all know I am not doing that!

Rick's test results are back. The goal of the transplant is to not have any of the patient's blood cells and 100 per cent donor (good) blood cells.
This is a rough chart of the tests:
7/06 (transplant) patient 7%
7/07 (one year date) patient 21%
after 1st Rituxan treatment patient 15%
after 2nd Rituxan treatment patient 21% (this is the last test)

The doctor at Hopkins does not feel that there is a big difference between 15% and 21%. They will continue to keep Rick on a Rituxan maintenance dose. He will receive treatments every three months. He receives the Rituxan one day a week for four weeks. They said they have kept patients in remission for years with this plan.

I will ask the doctor about a port or a Hickman line. Rick's veins are all shot. In the beginning of treatment, his veins were all very good. Now, it is very painful for him when they have to draw blood or access a vein. Unfortunately, if he is admitted to the hospital, I think this is the first thing they will remove. It is a primary source of infection. So, I will instruct him not to make any hospital visits anymore. That sounds easy enough.

After a battle with the insurance company, the nurse at Hahnemann was finally able to schedule Rick's immunoglobulin (once again - spelling - no idea - I like IVIG). He received it on Wednesday. They are very good in there. However, it is still a very long day. He will have this treatment once a month during the winter months. That means he will have another treatment in February. In March he will begin the Rituxan again.

I have developed a sinus infection. It seems like I just got over a simple cold. This one sent me to the doctor. I am on an antibiotic. Yes, it is contagious. I am back to my mask. I can't touch anything and not use a bleach wipe. Do you know how many things you touch in your house? This is just a short list: light switch, banister, water faucet, door handles, refrigerator door, utensils. The list goes on forever. We have separate phones, keyboards, toothpaste, dish towels (paper are best!). Our hands are sore from washing them all the time!

Sunday - January 20, 2008

We needed a few things at the store. Rick has not been feeling very well. I decided it was time for me to make the plunge. I would drive to the grocery store by myself. This was going to take some planning. The route - no making turns against traffic - no busy roads. Parking lot - remember to park far away from other cars. Debit card - what is my number? Most important - remember to breathe. Rick kept asking if I was sure I could do this. Sooner or later I need to leave the house. The longer I stay in the house, the harder it becomes to leave it. Yes, I am ready.

I was feeling very confident. I was very careful and followed the speed limit. I had only one little mishap. A young girl decided to fly across two lanes of traffic to cut into the third lane on my right. I jammed on the brakes and all was okay. I just kept repeating to myself, "Breathe. Time is your friend; you are not in a hurry." I could see the grocery store from here!

I parked a distance from any cars. Parking lots are still a little frightening to me. If I can pull straight out and no one is around, it is so much easier. Also, it is so much safer for everyone around me!

I was headed to the grocery store when I saw the Dollar Store just a few stores away. I thought about the little Christmas tree in our dining room. I needed decorations for Valentine's Day. Do you know almost everything is gone! I made my selections and went to the counter.
The bill was $6.42. I gave her a twenty-dollar bill and said I had the $.42. That was fine; I pulled out a huge handful of change and counted out the forty-two cents. She asked me if I would like to get rid of some of the change. That was fine. I gave her four dollars in change. Then she handed me my receipt and four dollars. I politely reminded her that I had given her a twenty. She called the manager to open the drawer. She had remembered the twenty. The manager opened the drawer and she handed me $14.00. I said, "No, now you have given me too much. I already have the four dollars; you only owe me a ten." Then she explained that the four dollars was for the change I had given her. I had forgotten about the change. The manager watched this entire exchange. I warned them and the customers behind me that I was headed to the grocery store next. They might want to avoid that store for a little while.

I headed back to the car with my purchases. The only problem I had was that I had forgotten to look at where I had parked it. I retraced my steps at the grocery store and then saw it. I'm glad we have a tall odd color blue van!

I did just fine in the store in spite of the crowds. I had my list of four things. I took my time and just kept reminding myself to breathe and I was not in any hurry. I thought I did quite well!

Rick needed a print-out of our prescriptions from our drug store. It was ready today. He had told me not to bother going because it is difficult to make a left hand turn out of their parking lot. Well, I had done the shopping first. That eliminated that turn. This left hand turn could be made at a light that has time for just left hand turns. Why not? I headed to Rite-Aid. I was like a kid in a candy store. I haven't seen shelves and shelves of make-up in almost two years. They even have all sorts of fake eyelashes now. I actually thought about it. Then I remembered my shaky hands. It wouldn't be a pretty sight! Just looking was fun! I picked up a few little things and his papers and left for home.

This was a big first for me. I drove alone. I went shopping alone - to THREE different stores. There were no accidents and I only lost the van once. Our little Christmas tree is now a little Valentine's Day tree! I am still breathing and the world is still turning.

I will keep you posted on Rick's progress. We thank you all for your letters, cards, e-mails, thoughts, and prayers. They do keep us going. One of our family members could also use your prayers. Our son-in-law Fran is facing his own family crisis.

Fran has just recently learned that his father who is 82 has been diagnosed with colon cancer. His mother passed away just a few years ago. The doctors still have a few more tests to do. However, they have been told that they believe it is very serious. I would ask for your prayers for Fran, Tiffany, Ellie, and his brothers and sisters, nieces and nephews, and the other grandchildren.

Until laterÖÖÖ..

Love,
Nance

Tuesday January 8, 2008

Dear Friends,

Rick had his regular appointment with the oncologist yesterday. His counts are still holding at a stable place. I think it was the hemoglobin that was low in two out of three places. He is gaining weight now and is not happy about it. Christmas cookies I believe may be the problem. I know it isn't my cooking; I would have to actually be cooking!

They have a system of how they see patients in Hahnemann. It is a teaching hospital. We always see a Fellow first. He/she reads the chart (Rick now has three folders that are packed). The Fellow then comes back and asks Rick all the usual questions and then examines him. Then he/she leaves to sit with the doctor. They discuss the case before we see our doctor with the Fellow.

Rick has a tendency to answer the questions. He waits for our doctor to ask his questions. Yesterday morning I told him that I think he should talk to the Fellow the same as if it were the doctor. He or she needs to come up with answers and then run them by the doctor. That is how they learn. Rick agreed.

The Fellow walked into the room, shook our hands, and sat down. We know him very well; we know most of the Fellows very well. His first question was, "How have you been feeling?" To this Rick replied quite confidently, "Pretty well." I just burst out laughing. Was this my husband who hadn't been feeling well for the last two weeks? He wasn't sleeping well. He was taking naps most days. Sometimes he was falling sound asleep in his chair while reading the paper. I call that an unplanned nap. When I see he is asleep, I hide all the phones under pillows, not that a ringing phone wakens him. That is really asleep!

The Fellow turned and looked at me. They have come to know us both. Rick makes things look good. I tend to want them to hear the truth. He doesn't like to complain. We really have a great relationship with the doctors, Fellows, Residents, and nurses. They are all wonderful! Anyhow, the truth was out and Rick had to fess up. For as serious as things are, we are always finding things to laugh at during his appointments.

When we saw Dr. Crilley she discussed the meds Rick is taking that are not for the transplant. They could be making him tired. We are going to talk to our family doctor about switching them from taking them in the morning to taking them at night. That would be a simple thing. Hopefully, we will see a change.

The blood test to determine donor/patient blood ratio was sent to Hopkins yesterday. I think that will take a few weeks for the results. I'll discuss that when we actually know something.

His doctor is placing him on IVIG. That would be imonoglobulin (IV). I have no idea how to spell that. He will start on Monday. That should help his defense system to fight infections. I'm not sure how often he will be getting that. It is about a three and a half hour infusion. I thought she said through March. He could be going back on Rituxin in March. Most things will be determined by the test results from Hopkins.

Today Christmas officially started to end. Rick took the wreath off the front door and brought in the Nativity scene. It was so sad.

On the other hand, Christmas will be alive and well inside for a while. Partly, because I don't have the energy to even begin to put things away. Partly, because the little girl in me hates to see Christmas end, the decorations keep it alive inside me. Besides, the grandkids love it.

Do you remember the game table that Rick bought for the kids? It spent Christmas on the back porch - in pieces. That part wouldn't have been so bad. The fact that anytime the grandkids came over we had to carry everything to the porch and cover it. That scene took place a few times. Rick had put his back out, so I was doing most of the moving. Well, the table is together and in our dining room. So far, Jason and AJ have had the most fun with it. I am working on how to move the dining room table so this table fits. It's just not the size of the table; you need to have room around it to play the games. Oh well, Rick is happy with it.

I should stop laughing about Rick still putting up the little Christmas trees out front - after Christmas. Today we were sitting in the living room and I was looking at our Christmas tree. I'm still moving decorations to fill in empty spaces! I did sit for quite a while and tried to stop the urge. Unfortunately, I lost and just had to rearrange a few things.

Thank you again for all of your thoughts, prayers, cards, notes, and letters in the guest book. Sometimes I wonder if anyone still reads my ramblings. However, it has become therapy for me. One day when Rick is well we will read about the ordeal we overcame.

Last night he was talking to a friend who said she reads them. She was surprised when she found out that Rick has never seen one. Truthfully, I have never read one. This is more like a journal to me. If anyone remembers, my father criticized my writing when we were in Baltimore. I referred him to my original disclaimer. I don't write, edit, and rewrite. This is a story for our friends who can follow Rick's recovery without making phone calls and feeling that they may be disturbing him. It's a story for us. He remembers very little of living in Baltimore. I don't think I remember much more. I'm sure there will be tears when we finally read this, but I hope there will be more laughter than tears.

Until laterÖÖÖ

Love,
Nance

Tuesday January 1, 2008

Dear Friends,

From our family to yours, we want to wish you all a very happy and healthy New Year.

This has been a year of ups and downs for us. The ups always out weigh the downs. And if they don't, I just use my finger to tip the scales in our favor. That seems to work for us.

Rick put his back out a few weeks ago. He was picking up a partially filled gallon of milk. It's difficult to imagine him moving more slowly than he did before, but he can. L The doctor has him resting and using heat. It may take quite a while before it is completely better. He is discouraged, but he handles it well.

His counts have remained stable. He sees the oncologist every week. They are waiting until the middle of this month to do the test that will give us the donor/patient blood ratio. It will be sent to Hopkins to actually run the test. They use a blood sample for this one. I'm not sure when or if they will want to do one from a bone marrow biopsy.

There has been no decision made about what they will do when they see the results. We are in uncharted territory.

Rick still spends time researching all the new things for CLL. I read the ones that affect him. Until the transplant I studied every aspect of CLL and the different treatments. In the year following the transplant, we just survived. Reading or researching would have been impossible. I find it more difficult to research now. The choices before were ones that I understood and I felt capable of making wise decisions. At this point we are way beyond anything I can really understand. I also have to trust our doctors to know what is best. There are no statistics to compare. Everything is guesswork. Fortunately, we do trust our doctors. There is no doubt in our minds that they will do everything possible for Rick.

We did finally get some Christmas decorations up outside. I thought we had simplified a few years ago. We have three inflatable things for the front porch. One might think that was really easy. Well, we decided that we would only try one. Rick wanted the Nativity scene. He was in the middle of putting that one up when he hurt his back. That may sound impossible, but it was a two-day project. So, the deflated Nativity scene lay on our front porch. It was a sad sight to behold. It was also a constant reminder of how helpless we both are. The worst part was when Tiffany finally remarked, "Please tell me you don't have a dead turkey on your porch." Deflated it looked like the inflatable turkeys that people put up for Thanksgiving. Fortunately, it wasn't visible from the street.

Christmas Eve arrived. Rick was determined to finish his project. His back was a little better. Success! Our one lone Christmas decoration was up for Christmas Eve. We both celebrated.

We did know that we could have called our kids and they would have come to help. However, I also knew that they were struggling to do their own decorating. I don't think kids should have to come do your things when they barely have time to get their own things done. Besides, there is so much that must be done for us.

Slowly, we did get many of our Christmas things set up inside. Some of it was easy. Last year many things never made it past the spare bedroom. That meant no searching in the attic. Our small Christmas tree with all the kids' pictures on it never even left the serving table in our dining room. I think people just got used to that and thought it was intentional.

The three grandchildren decorated our Christmas tree. It is filled with old decorations that can't be broken. Not a single Hallmark decoration was unboxed. If they decide to play with something on the tree, who cares! The kids are happy with their tree.

This is a little story to describe Rick. I found a decoration that I wanted to hang over our piano. I noticed that there was already a thumbtack right in the molding where I needed it. That was probably left over from several Christmas' past. I decided that fish line would do the trick. Rick was reading his paper. I walked up and asked, "Where do you keep your fish line?" No questions; he just told me where to find it. Then, I looked at it and decided I wasn't sure how he cut it. It didn't look all that simple. I went back to him after I decided about how much I needed. I asked him if he would cut the piece for me. He explained why he cut it the way that he did. Of course, I wasn't really paying attention; I just wanted my fish line. I thanked him and went back to my project. Even standing on the top of the piano, it was difficult for me to reach the ceiling. I knocked things over; the decoration was banging against the wall; I just kept yelling, "Everything's okay." I finally gave up. The decoration was up, but I couldn't get it to lay flat on the wall. I was wondering if there was such a thing as a nail with points on both ends. I had tried tape and masking tape. I decided to let it go. To this day he hasn't noticed the decoration over the piano. He never asked me what I was doing. I love that part. I was sure if I asked about the nails he might put down his paper. J

Oh, one more little thing about decorations. Rick went to the drugstore to get his prescription. I try to keep him from driving, but sometimes he just insists on going. He came home with little Christmas trees with lights. You place them somewhere outside. He had to put them up right away. I believe we are the only people decorating for Christmas AFTER Christmas. It's okay; our neighbors are used to us. And, most important, it made him happy!

I will try to remember to tell you the story about the two of us putting together a game table. Needless to say, it wasn't out for Christmas. It was under a big cover on the back porch - in many pieces! J

Thank you for your letters, cards, notes in the guest book, calls, e-mails, calls, thoughts, and prayers. It is not easy staying in touch when you are mostly confined to your home. It really doesn't help when your immune system is so compromised that no one can visit you if they even think they might be coming down with a simple cold. However, you continue to stay in touch, keep us company, and make us laugh. Laughter is always the best medicine. We use it a lot!

I recently sent a letter to my classmates from high school. They have been a great source of strength for both of us. I would like to steal my last paragraph from that letter.

To you and all of your loved ones, we wish you a happy, healthy New Year. May your lives be filled with blessings from above. May you find happiness in life. May all of your dreams be realized. May acceptance, tolerance, and forgiveness become a way of life. May we find the strength to handle the difficulties that cross our paths. May we forever continue to be there for each other.

Until laterÖÖÖÖ

Love,
Nance

Saturday December 15, 2007

Dear Friends,

No, don't worry; we are not back in Baltimore. I do remember writing every day when we lived there. It was therapy, my connection to the outside world, and my only escape from reality sometimes. This is more like an addendum to my last update.

I have a cold. Now, that may sound very insignificant. However, it is the first time I have been sick (contagious) since Rick began treatments some years ago. I thought I lived in a sterile house - and world sometimes! Don't touch this; don't get on that elevator, someone sounds sick. Hold your breath if you are on the elevator when someone coughs or get off at the next floor. I can hold my breath a long time; Rick can't. Wash your hands ALL THE TIME!!! Sometimes I feel like I am constantly telling him what not to do. Don't touch that doorknob; don't touch the railing; never touch the handrails on the elevator. The list goes on and on.

This is the worst. I have to wear a mask all the time. I am wondering how doctors to surgery if they wear glasses. My glasses fog up constantly. I feel like I am going to suffocate; I can't get any fresh air. That is difficult for someone who is borderline claustrophobic; did I actually say borderline? We each have our own phone to use. Of course, no one can actually understand anything I say on the phone. My voice is almost completely gone. Rick may enjoy this sometimes, but it has certainly placed a damper on our conversations. That's really bad when there are only the two of us in the house most of the time.

I am just hoping that my cold or whatever it is will be gone soon. I want to take off this confounded (as my father would say) mask!

Until laterÖÖ.

Love,
Nance

Thursday December 13, 2007

Dear Friends,

Sorry I've taken so long to write. In fact, I was going downstairs to watch TV with Rick. I was talking to him and I realized he was sleeping. I would have changed the channel, but he was asleep with the remote in his hand. I took this as a sign to go back upstairs and start my update!

Mostly, I have been waiting to write about good news. Rick has not been feeling very well. He has run some fevers, but I have managed to keep him out of the hospital. Yesterday, we learned that he does have a urinary tract infection. He is already on antibiotics; he will just continue with them. We are hoping that this may be what is causing the fevers. He is still very weak and tired from his hospital stay.

I've just finished my routine. When he falls asleep in his chair, I hide all the phones under a pillow in the living room. I use pillows to cover all the receptacles that ring downstairs. Then, I usually retreat upstairs to the computer. He needs his rest.

I do wish I could remember all the funny things that happened during his last hospital stay. Unfortunately, or fortunately for some, I can only remember one right now.

The second night we were there I went to the sink to brush my teeth. We need to be very germ conscious in our family. We never put the toothpaste directly on our toothbrushes. First, you put it on your finger, next you put it on the tooth brush. Well, I squirted some on my finger. I thought it looked strange. I had gotten it from the plastic bucket of things a patient receives when he is admitted. I was about to brush my teeth when something told me to put on my glasses and look at this tube. When I read the label it was white petroleum jelly! He didn't get any toothpaste. Rick's only comment was, "Well, your lips wouldn't have stuck to your teeth!" It took two days to get a tube of toothpaste!

My single goal right now is to keep him out of the hospital. We constantly joke about the fact that he is always admitted to the hospital on a holiday or the holiday weekend. Our doctor told him that she would pencil him in for December 26th. It may sound funny, but it has proven true. The holidays terrify us.

He has an appointment with the oncologist this Monday. He has another appointment on December 26th. They will do a blood test at that appointment that will tell us what the donor/patient blood cell ratio is. We won't have the results for a while.

He never received his last dose of Rituxan. The doctor agreed that the problems that placed him in the hospital the last two times might indeed be related to the drug. I don't think he will get it again. That was the drug that was supposed to help the donor blood take over. I will let you know when we find out how much of the blood is still leukemia.

We want to wish everyone a very Merry Christmas, a happy holiday season, and a very healthy, happy New Year. Thank you for your get-well cards, Christmas cards, well wishes, and prayers. They keep us going.

Until laterÖÖ..

Love,
Nance

Thursday November 29, 2007

Dear Friends,

We are home from our visit to Hotel Hahnemann (Hospital). Rick was admitted last Friday. I was sure early on in the day that we would be headed to the hospital. I also knew that he was not ready to go. I did ask him if he minded if I just called the hospital to talk to the Attending Fellow on call for our doctor. Rick's temperature had been rising very slowly in the morning. When he gets to 98.6, I know where it is headed. When he hits 99.0, I need to be ready to get to the hospital. He was okay with me just talking to the Fellow on call. I told him about the slight fever. He immediately called in an antibiotic. Rick started on it right away. However, by about 4:00 his fever had reached 99.0. I called the Fellow and this time gave him Rick's past history. I received a call back in minutes. He had spoken to the doctor and she wanted him admitted ASAP. He chided me for not giving him all the information the first time I called. I told him I was sorry, but I knew Rick was not going to be agreeable to going to the hospital in the morning. I also told the doctor when I saw her that it was not the Fellow's fault for not calling her the first time. I had intentionally withheld the information from him.

Jason took us to the hospital at 11:00 PM. We already had his room number. We went in through Admissions. They do not want Rick in the ER. We were finally in his room about midnight. Jason stayed until about 2:00 AM. I finally told him to go home. It could be a while until we saw anyone or they did anything. All I knew was that my strong request had been granted. Rick was in a room without another patient. That meant that I could stay with him. The Fellow on call had promised he would do all that he could to get him a private room. However, it was most important to get him into the hospital immediately. They may have to worry about the room arrangements in the morning. (I told him that our doctor who is head of the oncologist's office had promised me that Rick would never have to spend the night without me. I don't think he wanted to wake her at that hour to fix things for me.) And, even better I actually had a bed in this room! I have spent many nights and weeks sleeping in chairs.

It was 4:30 AM when the nurse had taken the last lab and left. We were both exhausted and Rick was feeling terrible. Since his last stay in September, all of his veins have collapsed. Anytime they need to draw blood or give IV meds, it is very painful. His arms look so sore. He now cringes at the thought of any of these things. Until his veins became so bad, he never complained.

This was one of our worst stays in the hospital. I am so glad that we were able to come home last night. The only saving grace is that with few exceptions our nurses are wonderful. Our doctors are incredible. Having said that, almost everything else was a disaster. His blood from his admission - lots of labs and lots of blood - were lost. They had to re-do all the labs again Saturday morning. He was tested four times for C-Diff. They usually test three times. The third sample was lost. I only left the hospital once. I wanted to keep my appointment with my doctor. Rick was feeling well enough for me to go home. My father was already on his way to get me when the nurse came in the room to tell us that they were moving Rick. We both went into a tailspin. That meant a lot of packing for me and I was about to leave. I was like a crazy person trying to pack as much as I could before I had to run down to meet my father. Then the nurse came back and told us that I could take care of things when I got back. Unfortunately, by then the downward spiral for both of us had begun. We never fully recovered.

When I arrived home I rushed to do as much as I could: check the mail - throw a load of laundry in the machine - gather all the things on Rick's list that he needed. I couldn't wait to get a shower. I had been in the same clothes since Friday. I hadn't been able to get a shower since Thursday night. One would have thought that I would have jumped in the shower on Friday. However, I was watching our granddaughter, and trying to pack for the hospital without anyone knowing. I also did not want to upset either her or Rick. I stood in the shower until there was no more hot water. I almost felt clean. I could have gone through an entire bottle of cream and I don't think my skin would have felt soft yet. I saw my doctor, dried and folded the laundry, and packed all the things that Rick had requested. Tiffany and Ellie picked me up and took me back to the hospital. Ellie gave me a note for Pop. It simply had Ellie and Pop written on it. Pop was supposed to write her a note on it. I grabbed all my things, kissed Ellie, jumped out of the car, and ran into the hospital, and waited for the elevator to take me to the 18th floor.

Rick was patiently waiting for me when I arrived. Even though he was feeling better (than when we arrived on Friday) he becomes anxious if I ever leave. I packed the rest of our things and walked out to the nurses' station. That would be directly across from our door. That may give you some indication of the noise level in our room all day and night. I had never seen the nurse behind the desk. I told her I was going to begin moving our things into the next room. According to her that was not going to happen until the head nurse returned - from where I don't know. All I knew was that it was going to take a while and I wanted Rick settled ASAP and in bed to watch his favorite shows. That is the highlight of our days in the hospital. We listen to our music and read during the days. At night we have some favorite shows we really enjoy. I had no intention of waiting! I found his nurse and told her what had happened. She thought for a moment and then told me to just go ahead; I did! We were moving to the next room. It was a private room - one bed. On each trip I had to pass the nurse at the station. I was prepared for battle, but she left me alone. That was probably good for her. I had us all settled in before our show. The only problem was that they had told me they had a recliner that opened into a bed for me; they didn't. I ended up sleeping on the floor. After not seeing anyone since our doctor that morning, the room was suddenly filled with doctors and nurses for different things. We never really got to see our two shows - just bits and pieces.

Rick had missed his last dose of chemo on Monday. His counts were dropping each day. They did not want to give him the chemo until they got them back up. They do that with a couple of different meds. Finally, they started to come up. It was decided that he would receive the chemo yesterday if the counts looked good from his morning labs. On Tuesday they had taken him off all the IV antibiotics. He had no fever and they had no idea what was wrong. This is just what happened in September.

He woke up yesterday morning and was nauseous. This may be difficult to picture, but this room is almost part of the nurses' station. The work desk runs directly up to our door. Anyhow, I walked up to the desk and told them he needed anti-nausea meds. I asked for Zofran in pill form; it was 7:40 AM. It arrived at 2:15 PM. Had he continued to feel sick, I would have called Tiffany and she would have brought his Zofran from home. I won't even discuss the dialogue about giving him an injection and not a pill. It wasn't happening!

He tried to order breakfast after I had made him some mint tea. This was the first time he had made the call to place a meal order. His end of the conversation didn't make much sense. He hung up and I asked him what had happened. He was told that his room number was not changed in the computer and he couldn't order his breakfast until a nurse made the change. I said, "Give me that phone!" I called and placed the order for the former room number. Then I wrote a note explaining the room change and hung it on the room number of his old room - just a few feet from our door. I later found his breakfast sitting on the table in an obviously empty room. It would have been impossible to look at the room number and not see the note. Doesn't anyone read or even care? He was still too sick to eat it so it didn't really matter.

One of our doctors told us that they were going to go ahead with the chemo yesterday. His counts had finally come up. A nurse came in to place the IV. She was able to find a vein. We sat for several hours waiting for the drug to arrive. Fortunately, I had his premeds with me. I just gave them to him. Just when the chemo arrived, our primary oncologist called to stop the infusion. She preferred to wait until Monday. Hopefully, he would tolerate it better. So, they had used another vein for nothing. They also decided to release him. It was 4:00 PM.

I asked the nurse how long his discharge might take. Sometimes it has taken several hours. They need to find a doctor just to fill out the paperwork. I told her I didn't want to stress her. I was more than prepared to stay until after 6:00 PM to miss the traffic. She came right back and said that the doctor was almost finished and he should be ready to go in twenty minutes. She said I should call my daughter to come and pick us up; I did.

I was ready to go when the nurse came back and said that she had to draw more blood for labs. The morning nurse had never drawn the blood for the labs that the infectious disease doctor ordered; she forgot! They couldn't use the IV that was in; she had to stick him again! I was getting angrier and angrier, but managing to keep it inside.

We are now really ready to leave (labs are done and the IV removed) and the Head Resident comes in and tells us that the oncologist has ordered another Nupagen (sp?) injection. They will call the pharmacy. This was my breaking point. He is trying to tell me this will only take a few minutes. I went on a quiet tirade (for me) about the Zofran. Nothing comes from the pharmacy in less than an hour - and that is RARE! The nurse had already called the pharmacy and told me that she was going down to the pharmacy to get the Nupagen. I guess I had convinced the Resident that I had no intention of waiting. He called the doctor and she said he could leave without it. Rick would be in the office on Monday and he could get it then.

Finally, the nurse asked Rick if he could walk to the car. They have always made him leave the hospital in a wheel chair. I was planning on placing several of the things that we had accumulated onto his lap. She said she could do that, but she would have to call transport. That can take anywhere from thirty minutes to one and a half hours or even longer. Forget it; I'll make two trips. She was really sweet. She said she would go down to the car with us. While she was getting permission, I managed to loop as much over my shoulders as possible and hold onto the rest. Rick managed a few things. I would make it myself in ONE trip! I DID!

We are home. Rick is tired and frustrated. But, we are home in our own bed and no one will stick him!

In spite of all the terrible things, there are many funny stories about our stay. We could never spend that many days anywhere and not be laughing! I will save them for my next update. This is already too long!

Thanks for the notes in the Guest Book. They really mean so much to both of us!

Until laterÖÖÖ..

Love,
Nance

Friday November 9, 2007

I hope I am not confusing anyone. I do know that we are both very confused. Everything has happened so quickly. We saw the doctor on Monday and Rick went back on Tuesday for treatment. I guess each week will be a new experience. We have three more Mondays scheduled.

Rick feels rather lousy the first couple of days after treatment. Then he has a couple of good days before it begins again. Mostly, he dreads the IV. He had so many tests during his two weeks in the hospital that his veins collapsed. They are having a difficult time with the IV. This had never been a problem for him. Three more weeks. He will be glad when this is over!

I would also like to let you know about Ryan, my girlfriend's grandson. He is still having great difficulty in the hospital. He and all of his family need all the prayers that you can send for them. He just seems to face one obstacle after another. He is still fighting!

Thanks so much for all of your thoughts and prayers. They are much needed! We also appreciate the notes and e-mails. Please remember to sign the guest book if you have time. We really enjoy the notes. It also helps me remember that people are still following us on this winding journey filled with surprises. I have never read an update after I have typed it. Rick has never seen one. I depend on my editor Tiffany to make me aware of anything that shouldn't be in print. She has found many things questionable, buts allows me to pass them along. J We both read the guest book. Someday, a long time from now, we may decide to find out just where we have been and how we fared. We may decide to skip the health part and read the funny parts. Some things may best be left locked away in the recesses of the mind.

Until laterÖÖÖÖ

Love,
Nance

Tuesday November 6, 2007

Dear Friends,

We are home from Rick's first chemo session. It went well. He had no bad reactions. The balance of the treatments will be on Mondays this month.

Okay, I need to print a correction. I thought he would be in chemo for three months. He is only getting one month of chemo at this point. We don't know what they will do at the end of the month. The normal maintenance dose is one month on and one month off. However, his is not considered a normal case. We are thinking that they may wait two months and run another test to see how much donor blood he has. Then, they may decide what the next step will be. This is why they call it a trial. They are doing the best they can.

Connie, our nurse, was so good to us today. She had us in a private room with two recliners so I could be comfortable. After she had Rick all hooked up and the chemo running smoothly, she left and told us to just take a rest. It was after she left the room that Rick asked me to pull out his recliner so he could lie back. Simple request; wouldn't you think? Well, this was a very narrow room. Directly across from his recliner were cabinets on the floor and about three feet high. I stood at the foot of his recliner. It had to be pulled away from the wall to get his feet all the way into a reclined position. I straddled the footrest, unlocked the wheels, and pulled the recliner away from the wall. The footrest hit the cabinets and I braced myself on the armrests so I wouldn't fall directly onto Rick. All I could do was begin laughing. Unfortunately, the door to our room was open, and we were the room in the hallway just before the room where all the doctors, fellows, and residents meet to discuss patients. Out of the corner of my eye I could see the head resident passing our door just as this all happened. She just quickened her step and tried not to notice. I did eventually get him settled when I was able to stop laughing. Only we could make chemo treatments funny.

We will be back at Hahnemann next Monday. Hopefully, everything will go as smoothly as this last treatment. I am also prepared for the recliner this time. :)

Until laterÖÖÖÖ

Love,
Nance

 

Friday November 2, 2007

Dear Friends,

Sorry I am running behind with the updates. I actually had to look back to see what I covered in the last update.

Rick has been doing well. He saw Dr. Crilley, his oncologist, last Monday. All the counts are still holding. She is waiting to talk to Dr. Jones at Hopkins to see about starting Rick on Rituxin again. We expect to find out at out next appointment on this coming Monday that it will be starting immediately.

We did have an emergency appointment with the oncologist last Friday. Somehow, we missed this little thing when we saw Dr. Crilley on Monday. Rick had had a slight rash on the right temple of his face for at least a week or two. It had not been anything that alarmed me. Believe me when I tell you that I am constantly checking for rashes. This almost looked like he had been sleeping on that side of his face, or maybe even holding the phone on that ear and it had left a slight pink spot. On Thursday evening I noticed the rash suddenly had spread. It was on both sides of his face. It ran from above the eyebrows down to and on his neck. It was also darker.

Rick called the office first thing Friday morning. The doctor wanted to see him. Fortunately, he had no other symptoms. Unfortunately, they could not come up with any reason for the rash. He had been using a cream that our family doctor had given him. The doctor told him to just continue with that. She told us that she would be on call that weekend. That news is always comforting. Rick does have a history of getting sick on weekends. It helps if the doctor on call has just seen you.

We spent most of the weekend checking his temperature every fifteen to thirty minutes. That may sound crazy, but he spikes a fever very quickly. Even I wouldn't believe it if I hadn't lived it so many times! The rash slowly disappeared and he never developed a fever. It was a good weekend!

Please keep Baby Ryan and his family in your prayers. He is the grandson of a very dear friend. Last week he took a turn for the worse and had to be rushed to the hospital. He will be in the hospital for several weeks. My friend and her other daughter Tracy will be taking turns staying home from work each week to care for the other three children at home while mommy Danielle stays in the hospital caring for Ryan. Daddy Kevin stops on his way home from work at the hospital to see Mommy and Ryan before heading home to relieve the helping family members. This last year has placed an emotional, physical, and financial burden on the entire family. Remember you can see Baby Ryan at www.RyanDonnelly.net. I will keep you posted on his courageous battle with all of his heath problems. He is definitely a little fighter!

Good News

Rick has felt well enough to go for several walks with Baby and me. (For anyone who missed the Update about Baby, she is the rescue greyhound we adopted about two months ago.) She loves it when we both take her. She stays right in between the two of us. Her long nose and slender head just peek out between our knees. We are also able to walk down Haddon Avenue. She hates the traffic on Haddon Avenue, so when it's just the two of us, I usually wander around the back streets. I think she feels more protected with one of us on both sides of her. The walks with Rick are usually much shorter than when it is just Baby and I. However, we cover more distance with Rick. Rick seems to walk with a purpose.

Baby and I wander aimlessly. Sometimes she decides she would like to sniff a particular little spot on the sidewalk for ten minutes. I don't care. I just wait until she is ready. She is my therapy. I am learning to slow down. Believe it or not, I have actually met people and spent time talking even when it's dark and we aren't on the avenue downtown. Sometimes, I think it's not the smartest thing to do. However, most of the people I meet have kids who want to pet Baby, or they have their own dog with them. I have also decided that I am safe with Baby. She is incredibly big and strong. She smiles at us if we have been gone, and our kids when they come. She has very long teeth! She is very loyal and protective.

Yesterday afternoon we took Baby and Ellie our granddaughter for a walk down Haddon Avenue. Pop (aka Rick) in his infinite wisdom decided he had a fun game for Ellie. There was a witch on the front lawns of one of the houses on the block just before Haddon Avenue. He and Ellie ran ahead of Baby and me and pretended to be statues on either side of the witch. It was really cute until Ellie thought it would be even funnier to follow Baby and me and pretend they were Zombies. They looked like something out of Michael Jackson's Thriller. Their faces were contorted, they had the strange walk perfected, and their arms were stretched out in front of them. Well, Baby and I had to pretend to be scared. That would have been okay, but we walked down three blocks of Haddon Avenue looking like that. Mostly, Baby and I tried to pretend we didn't know them. It's amazing the things a granddaughter can get her Poppy to do for her.

Saturday night we will be babysitting our other two grandchildren Nicholas and Alyssa. We are going to be there to put them to bed. Nicky will be five in a few days and Alyssa will be three the end of February. This may sound quite minor. However, we have never put them to bed. I'm not sure if we have even watched both of them. So, this will be a big deal for us. There never seems to be a time when both of us have been well enough to baby-sit two grandchildren. Even though they are excited about us coming, Alyssa especially does not understand that mommy will not be putting her to bed. We will be thrilled if the evening goes well.

Until laterÖÖÖÖÖ.

Love,
Nance

Sunday October 14, 2007

Dear Friends,

Rick's appointment on Thursday went very well. First, he saw the Infectious Disease doctor. Next, we walked across the street to see his oncologist. Everything was good news.

Dr. Bruno, the Infectious Disease specialist, saw Rick every day while he was I the hospital. I believe he is head of his department. We really liked him. Not only is he an excellent physician, he has a wonderful sense of humor and great bedside manner. He ordered a follow-up CT scan. He will check the node that was seen on the last one. Hopefully, there will be no change. I think they have seen this node before. After a while some things just blend together. Unless he sees something on the CT scan, we do not have to go back. We just now have him working along with Dr. Crilley if the need arises again. It's not that we don't enjoy seeing him, but it is one less appointment.

We walked into Dr. Crilley's office just a few minutes early for that appointment. While we were waiting, Tiffany and Fran walked into the waiting room. While we were across the street, Fran and Tiffany were on the fifth floor of Hahnemann. That is where Fran needs to go each week to give blood due to the hematomacrosis. We had been hoping that maybe Rick would see the doctors early and we would all be ready to leave at the same time. It was not to be. We sent Tiffany and Fran home. I had already made alternate arrangements for a ride home. My father was coming to pick us up when we were finished. Everyone knows those great plans never work out!

We are usually a long time in Dr. Crilley's office. We know everyone there. We can't leave without talking to everyone. I would like to point out that this is usually something for which I am held responsible. The credit for this is given to Rick. I enjoy it; I'm just not the one running around looking for people.

Waiting for this appointment had been very stressful. We were hoping for the results from the chimerism test. It tells you how much of Rick's blood is his and how much is donor blood. Perfection is 100% donor, but they never really expect to see that. In the last test Rick's blood was gaining on the donor's blood. His had jumped to 28%. That was very disconcerting; we were moving in the wrong direction. After this long hospital stay, we didn't know what to expect. SHOCK! His own blood cell counts had dropped to only 15%! That was great news. The donor blood is starting to take over again. His other counts are all doing well also.

I think they are attributing the rise in the donor blood taking over to the month of Rituxin (a form of chemo) that Rick had just a few months ago. For some reason - they don't know why - the Rituxin works differently in the body after a transplant. He had had Rituxin before the transplant. It was used to lower the white cell count and hopefully place him into remission.

If I understood them correctly, he will be receiving maintenance doses of Rituxin to maintain the success of the transplant. I haven't asked if that will go on indefinitely or if there are a certain number of doses. One step at a time.

Fun News

Last night I attended my girlfriend Doreen's benefit for her grandson Ryan M. Donnelly. Tiffany, Fran, and Ellie took me. Although I had been looking forward to going, I found it extremely difficult to get myself to go. Rick could not be in a crowd like that. Even though I wasn't alone, I felt like part of me was missing. I spent the day pacing, trying to nap, and feeling very sick. However, I was determined to be there.

Doreen with the help of family and friends had pulled it all together. I'm not sure how she manages these major events. They had so many baskets that they had two Chinese Auctions. I think they had over sixty baskets in each one! They had a 50 - 50 going on. They had huge items for a different auction in the front of the room. I don't even have any idea how many door prizes were awarded. Somewhere in the middle they had a huge buffet being served with delicious food. At the end they had an auction. By that time Ellie was asleep and I was not far behind her.

I have never been to a Chinese Auction. I found out that this is lots of work and can be very stressful. Thank Heavens for Tiffany. She had a system going. My part was very small. Tiffany was sure I was trying to give her a heart attack when I kept buying more tickets. Instead of writing a check for the benefit, we would spend all that money on tickets and just have fun. It sounded so simple when Rick and I had discussed it.

The baskets were incredible. Someone asked me what I wanted the most. Actually, I couldn't name anything. I knew two things that Rick wanted - tickets to the Seventy-Sixers and the basket of assorted Eagles shirts, sweatshirt, hats, etc. I have no idea how many tickets we threw into those baskets - a whole lot!! Then we chose overnight stays that Tiff and Fran could use and Ellie chose things. It was all for a good cause. Tiffany would probably like to point out that I put tickets into all the baskets with brandy. She asked me why I was doing that. I didn't know; I've never had brandy; why not try it.

During the first Auction Ellie won three baskets. She was on top of the world. I would like to point out that she only dropped one or two tickets in the baskets she wanted. We dropped handfuls into the ones we wanted. We won nothing for ourselves.

The second auction was starting right after the first one ended. I had told Tiff and Rick that we probably wouldn't stay past 10:00. But all those beautiful baskets were calling. I still had all this money for tickets; I had to spend it. And so it began all over again. This group had the Eagles basket of assorted shirts and more Sixers tickets. The rest of the tickets went to the same items as before: overnight stays, brandy, and Ellie's picks.

Time was over; we were ready for the calling of the winners. The first prize in this group was a Chopper Bike. I have no idea what that is. I will tell you that it is longer than the car we had arrived in! Ellie had asked her Mommy if she could pleeeasssse just drop one ticket in the basket. They called the number. Tiff kept saying to me, "Mom we won; raise your hand." I kept shaking my head no. We couldn't win that. The next thing I knew I was standing up - I think I was still shaking my head no and saying "no" as I walked up with Doreen to claim this monstrosity. As I walked up with Doreen, Ellie asked Tiffany, "Can I go get my bike?"

If I had only left at 10:00. If the bike hadn't been enough, Ellie won another big basket. How were we ever going to get home? I stayed inside and helped clean off tables. I didn't even want to witness this debacle with the bike. Tiffany said Fran was laughing so hard he was doubled over and couldn't do anything. She finally told him that everyone in the parking lot was watching her all dressed up, dealing with a half- sleeping child and trying to lift this incredibly long, heavy bike into the car. He got himself together and they finally got it up into the car. It's front wheel rested on the dashboard. The back tire stuck out the rear window just past the spare tire on the back of the car (CRV). Fran said, "I'm taking a cab." Tiffany insisted that I could squeeze into the little space on the floor behind the back seat and hold the window mostly closed. Fran said, "Your Mom can't do that." Tiff said, "She's had an entire bottle wine, she'll be fine." I was and we made it home. We got Rick up at 1:00AM to come help us out of the car. Well, it was the bike that really needed help.

Ellie didn't see her baskets until this morning. I think it was better than Christmas at the Smith house. The bike is in our foyer. In fact, it is our foyer. I, for one, am still trying to figure out what it is.

We all had a wonderful time. I am so thankful for all the people who came out to support the family last night. In spite of all the terrible things we hear about, last night was a reminder that the world is still filled with good, caring, loving people. Doreen did a marvelous job. Our prayers are with little Ryan and the entire family. You can still read about Ryan and send donations. His web address is: www.RyanDonnelly.net . Please keep the family in your thoughts and prayers. I will let you know how he is doing. He has had a very tough time during his first year. Every day has been a battle. He is such a little fighter.

Until laterÖÖÖÖ..

Love,
Nance

Friday September 28, 2007

Dear Friends, 

I do apologize for not writing earlier. We have been home from the hospital for a week. We are still both recovering. It was a long two weeks. I do know that Tiffany tried to keep you informed.

The final diagnosis was a fungal infection in the lungs. He will be on anti-fungal antibiotics for a long time. They will do another CT scan in about a month to see if the nodes are getting smaller.

While he was in the hospital his veins began to break down. After it was decided that it was not a blood infection (over a week), they placed a pic line in his arm. This saved not only his veins, but also the pain from all the injections and blood tests. I know they had to be painful; he never complains.

The doctors told me that this was very serious and dangerous. They suggested that I have the kids come in to see him. Our primary oncologist promised me that if it got to the point where they could do nothing more, she would tell me. Rick was never aware of these conversations.

We were all happily surprised when things began to turn around. His fevers finally stopped. After three days of having no fevers, they finally discharged him on Thursday. That was a good day! 

This was the third time I almost lost him in the hospital. If things really do come in threes, then this was the last time. That's how I am going to look at this last hospital visit! We're home free now. 

On Monday we returned to the oncologist. His counts are all recovering nicely. They believe this may be due to the Rituxin treatments that he received about a month ago. Time will tell. He will be seeing them every week for a while.

We are also going to see the infectious disease doctor. We met him daily in the hospital. Our oncologist would like him on board with this infection. They certainly do keep us busy.

I promise to keep you posted on his progress. He is not allowed visitors for another week. It may be a little longer. He is very weak and exhausted.

There are two things I would like to mention in my update. The first one is simply for prayers. Karen has been following our journey since we left for Baltimore. We have never met. I would like to copy a letter she sent to me: 

This is the beginning of a Prayer Chain for my cousins grand daughter. She is 6 years old and had a malignant brain tumor removed on Sunday Sept. 23. I am asking for everyone to pray to God to heal this little girl and to give her the strength to endure what is to come. Her name is Julie McKenzie. Thanks to all her forward this on to all their friends. Peace&love, Karen Thomas 

The second thing is about a benefit for my girlfriend's grandson Ryan M. Donnelly. Tiffany has placed a link to his web site on the first page of Rick's Update Page. Doreen, his grandmother, and I have been friends since high school. She has given so much help to Rick and me in so many different ways. I was in the middle of helping with donations for the Chinese Auction and ticket sales when Rick decided to check into the hospital. Please go to www.RyanMDonnelly.net to find out more about his myriad of problems. He is also the youngest of four children. If you are interested in making a donation the information is all there. If you live near Bellmawr, NJ, please consider attending the Beef and Beer Social. Rick can't attend, but I will be there. There will be plenty to eat and drink and a DJ for dancing. The baskets for the auction are unbelievable. Feel free to contact Doreen or me for tickets. They can't be sold at the door. She will need a head count for the food.

Over the years I have learned to take nothing for granted. Each day is a gift. We never know what really is behind that smile on someone's face. Helping a person in need takes your mind off of your own problems. All of our senses are a precious gift; don't forget that. Remember the importance of forgiveness. Learn to live in the moment. You may never get that special moment again. Love with all your heart. Be a friend. Take care of one another. 

Don't wait for a serious or terminal illness to learn these lessons. Live your life like each day could be your last. We never know.

Rick and I live in the moment. We hope for good reports and miracles. We laugh; we talk; we watch television; we listen to music; we visit with our children and grandchildren. We are always together enjoying all that we can. We have found happiness. It was right in our home! 

Be good to one another. 

Until laterÖÖÖÖÖÖ 

Love, Nance

Update on Rick 9/15/07

Hi everyone. I just wanted to send out and email to keep you posted on Rick.  I really do not have very much info.  The Drs. are assuming it is fungal pneumonia since none of the bacteria cultures are growing. Yes, they did the biopsy, but they are fairly certain the infection is too deep in Pop's lung for them to get to it in a biopsy.  He had a bad reaction last night to one of the drugs they gave him for nausea, so it was a very long night for him and Mom.

 

Update on Rick 9/12/07

Hi everyone. Just wanted to further update you on Rick.  He is still in the hospital and the Drs are still working on finding out what is wrong. They are pretty sure he has a fungal pneumonia.  He will have a lung biopsy today. On top of everything else he has come down with c-diff.  His counts are so low I think he is just becoming susceptible to infections at this point.  It will take three days for the results from the biopsy.  I know that he will definitely not be released this week.  I am hoping he will be home by early next week.  Thanks so much for all of your emails and support.  I'm sorry I haven't been able to email everyone back individually.  It's just been very crazy here.

 Please continue to pray for him and my Mom.

Monday Sept. 10, 2007

Just wanted to update everyone.... Pop was taken to Hahnemann hospital last Friday night. He is running a fever and has been running a fever on and off since then.  The Drs are running a battery of tests including CAT scans and MRIs.  I really have no more information at this time but will keep everyone posted as I find out more.

 

Saturday August 25, 2007

Dear Friends,

It's almost the middle of the night and I can't sleep. Maybe if I write this update, I will feel better. I know I am falling behind. Rick's appointment was last Monday.

Rick's counts had all improved. This was all good news. This could mean the treatment helped. She gave him a week off and said to come back in two weeks.

He told her that he had scheduled an appointment at Hopkins on September 20. She thought that was a good idea. She is going to contact our doctor there. She thinks they may want to do another bone marrow biopsy to find out more about how things are going.

We are hoping to soon find out what the next plan of actions is. Waiting is very difficult. 

On a different subject, we are thinking about adopting a greyhound. I think I did this before; it didn't work. We - Tiff, Fran, and Ellie - adopted Annie. She is wonderful. We all love her. She is perfect. Unfortunately, she has completely bonded with her new family - especially Chewie. He is a little white two-year old mix Tiff rescued. They love to play. They do warn you that they bond quickly with their new families. I am never getting her.

Tiffany found another brindle female three-year old greyhound coming into Greyhound Angel Adoption on Sunday. Her name is Harmony. She is very cute and does look like Annie. Tiffany was checking her pedigree. Her mother is Elliemay. Fate? Tiff's daughter is Ellie, Rick's birthday and our anniversary are both in May. Then another name caught her eye. She did some quick investigating. Annie and Harmony are cousins. 

It will be a little while before we find out if Harmony is right for us. She has to be kid, cat, and other small breed friendly. I'll keep you posted. 

Until laterÖÖÖ

Love,

Nance

Friday August 10, 2007

Dear Friends, 

Rick finished his last treatment this past Tuesday. His counts are still hovering around the same place as they were when he started. He does have more energy than before.

Today we received an e-mail from Audra, his nurse practitioner at Hopkins. She will FAX us all the results today or Monday. She said it is too soon to say that the Rituxin (treatment) isn't working. I guess that was good news.

I wish I had more news for you. I wish we had more news for us. I haven't decided which is worse - knowing (if it isn't good) or not knowing. This is when we are back to the wait and watch again. That's where we began ten years ago.

Rick is in good spirits and upbeat. He always has a positive attitude. The way he handles everything is truly inspirational. 

Last weekend we attended my 40th high school reunion. Rick graduated from the same school one year ahead of me. It is great because we all have the same friends.

We spent two nights at the Doubletree in Mount Laurel. We had a casual get together on Friday evening. We then had time to visit quietly with friends on Saturday. Rick and I both took long naps that afternoon. The reunion Saturday was spectacular. Rick was able to spend most of the evening after dinner in the Garden Room. It's a large room with cozy couches and chairs. He was comfortable and it was quiet. He enjoyed talking to dear friends. He was also close to the desserts! J I, on the other hand, spent the evening in the Ballroom. I felt like Cinderella at the ball. I really did behave myself. I had been warned that I had to stay rather quiet and calm if I didn't want to get sick. I danced a few times. The rest of the evening I sat in a chair and just watched the festivities. I didn't get to run around like I usually do, but I didn't get sick. It was a total escape from reality and I loved every moment.

I promise to keep you posted on Rick's progress as soon as we find out anything. Thank you for the much-needed prayers, support, letters, cards, and notes in the guest book. Although we never look at the updates, we do go back and read the letters in the guest book. They really help to keep his spirits high. 

Until laterÖÖÖ. 

Love, Nance

Sunday July 29, 2007

Dear Friends,

Sorry this update has taken so long. The truth is that I felt like a turtle who had retreated back into her shell. I didn't want to talk to anyone or see anyone. I just didn't want to think about anything, so I avoided it. 

We do have some of the results from the bone marrow biopsy. The donor percentage is slowly dropping. Originally, I think, the donor blood was 93%. Next, it was 87% and finally 85%. This one was 80%. Perfection would be 100% donor blood. The truth is that the closest they would probably see would be 99.?% - not 100%.

Here are the explanations: 

He has hemaÖ.anemia. His immune system could be attacking the red blood cells. 

The leukemia could be coming back. 

Chronic Lymphatic Leukemia (CLL) is very difficult to handle. There is not cure. That is why this is a Phase II Trial. 

They don't know. For this answer I was very appreciative. I know the doctor is being honest.

Next line of treatment: 

Rick had to start the Rituxin treatments immediately. 

Results: 

He is dealing well with the infusions. Tuesdays and Wednesdays he is very tired and not felling very well. By Thursday he is starting to feel better. He has two more infusions. His counts are coming up. That is a good sign. 

What happens next? 

If the Rituxin does not do the job, they would most likely give him an infusion of his donor blood. 

This is where things became hazy for me. There is a system used for related matched donors and one for unrelated matched donors. There is only guess work for Rick's transplant - Mini-Haplo. His was not a complete transplant; it was a partial transplant. His donor was a related, partial match. The good news from our doctor at Hahnemann was that our doctor at Hopkins, Dr. Richard Jones, was the best we could have! We'll cross that bridge if we ever get there. One step at a time. 

Good News: Fran, Tiffany's husband will be home from Germany next Monday. Yeah. They have all missed each other. I don't know what we would have done without computer cameras. He isn't there, but they can talk together and see each other. They eat together and watch movies together. At night, Tiffany carries him up the steps - on the laptop - to bed. Ellie tried to touch hands through the computer screen. It was the best she could do. 

One time Ellie was upstairs in her bedroom "playing with Daddy." Tiffany called up the stairs that she was going to run a few errands. She said, "Daddy will baby-sit." It only took few moments before Ellie yelled downstairs to Tiffany. We all found humor in it - even Ellie.

There has been a little change in things at our house. Usually when you heard a crash, I was the one yelling, "I'm okay!" Now, we are both doing it. I guess he is trying to get back at me for all the time I scared him! :)

I have so many funny stories about my therapy greyhound Annie. However, I am growing rather tired. Unfortunately, she is still living with Tiffany. I'm not sure if Fran was expecting to come home to the two dogs. Tiffany promised him that Annie was mine. Rick is just not ready for a dog. He does love Annie, but he does not want her here all the time. I miss her terribly. She is my reason to walk. We drift away into another world when we are walking. I actually use her to sit on if someone stops us to talk and I get tired. I can straddle her like a pony. 

One funny story - she seems to like alcohol. Twice, she has gotten into my glass of wine. The other night, it was close to 9:00 PM, she and I were passing one of the restaurants on Haddon Avenue. Several young men were sitting and laughing at one of the tables outside. They all had bottles of beer. Annie lunged for the table. I held on with both hands. The guys, obviously feeling no pain, were asking if she was friendly and could they pet her. I told them she wanted their beer. Then, they wanted to know if she could have some. I just told them she had had her limit for the day. 

I knew about the beer from another trip past the same restaurant. I caught her licking the beer bottles. She does have her little quirks. 

Thank you for your continued prayers, thoughts, support, cards, and notes. They are deeply appreciated by our entire family. This has been a difficult time. We really have to fight not to feel like we are back at square one again. 

Until laterÖÖÖÖÖ..

 Love, Nance

Wednesday July 18, 2007 

Dear Friends, Well, Rick's first Rituxin infusion is over. It was a long, uncomfortable day, but he survived. He is not one to complain. The care in the office is beyond excellent, filled with compassion, and if a problem arises, a doctor is only a few feet away. We have never felt concerned with treatments. 

Rick would feel safe and comfortable with any of the nurses. However, he made it through his Campath treatment with Connie. We feel a very special bond with Connie. She has become family. Either Rick was assigned to her, or she requested him. Rituxin is not one of their favorite treatments. 

His only allergic reaction was something like restless legs. His legs from his knees to his feet would shake uncontrollably. This happened on and off throughout the five hour infusion. Fortunately, it wasn't bad enough to have to give him Adavan. 

He will go for treatments once a week for four weeks. The Rituxin is supposed to work differently in the body of a person who has had a bone marrow transplant. Several years ago his very first treatment was Flurdarabine and Rituxin. The next three treatments should take less time. 

We are so thankful for the communication between our transplant doctor at Hopkins and our oncologist Dr. Pam Crilley in Hahnemann. She said she received a phone call last week, "Hi, Pam, this is Rick Jones. I have Rick Stubbins in my office." He really wasn't kidding when he said I am going to go call Dr. Crilley right now. He did! 

Rick's case is discussed with all the doctors in Hahnemann. Our main doctor is Dr. Crilley. However, if for some reason we must see another doctor, we know they are completely knowledgeable with his case. We always know he is in good hands. 

Last year on July 7, when Rick received his transplant, we weren't thinking of it as his lucky day. In fact, it was quite the opposite; we were scared to death. Who would have thought that his one-year date would fall on what was considered one of the luckiest days of this year. Reaching that one-year milestone felt good! His Rituxin treatment started on another important day. Yesterday was our son-in-law Fran's birthday. We looked at that as another good sign. He is still in Germany, but we were able to sing to him the day before - actually it was after midnight in Germany, so technically it was on his birthday. 

The trip down and back from Baltimore was filled with lots of excitement; my sister Donnalee drove. My sister and I are only seventeen months apart and are more like twins. I love having her around. I know how very difficult I am; Donnalee makes me look as laid back as anyone could be. 

She started her conversation while we were still in the kitchen that morning. She had been to the ophthalmologist and had been told there was nothing that could be changed with her prescription. She has developed cataracts from all the chemo, radiation, and drugs from breast cancer. The doctor told her to come back when she had to actually close one eye to read. That was when Donnalee told her that she had been doing that for a very long time already. She can see the right side of things, but not the left - that part is very fuzzy. Rick and I both thought she should probably not discuss the vision until after the trip. No problem. 

We were only five minutes from the house when she made a wrong turn. We were headed for the wrong bridge. It was just a minor detour and we were back on the right road again. Rick was awake for the ride down, so it was rather uneventful. The ride home was a different story!

 Once we were on 95 North, Rick felt comfortable enough to doze off. That was fine with us. We have no problem talking. The funny part was reading signs. I can't see much of anything even with my glasses. We would try to read the signs together. She usually beat me. How bad are my eyes? There is one part on 95 where the speed limit changes from 65 to 55. They almost always have a radar car just after the change. I made sure to remind Donnalee. I just wasn't sure when it happened. Rick would know, but he was asleep. At one point, I asked Donnalee, "Do you know what the speed limit is here?'' She had no idea. We decided to watch carefully for a sign. One was coming up. She said, "It's 55." I said, "No it's not. It said 65." That was when she mentioned again that the things on the left are fuzzy. She could only see the number five! I'm glad Rick was able to not hear us. He had his headset on and was drowning us out with music. 

He was a very good sport the entire day in the hospital. There is nothing worse than two sisters who love spending the day together. I actually thought we were going to be asked to leave one waiting area. Donnalee had mentioned to the woman across from us that her skirt was beautiful. Before you knew it we were in a great discussion about fashion and how to create your own. We were rather loud and really laughing. Eventually, a woman came out to get her. Donnalee and I both asked if she was coming back. No, she was on her way home. We were all disappointed; well, maybe not the rest of the room. 

Years ago Donnalee and I made a trip to East Stroudsburg, PA for a choir workshop. I had been there many times. I can still see Rick standing in the driveway asking me if I was sure how to get there. I kept telling him I knew exactly where I was going. He stood there waving as we backed out of the driveway. He was still watching when we pulled back in. I was already headed the wrong way on our street. He shook his head, but he didn't make any comments - at least ones that we could hear!

 We would like to thank everyone for all the notes and e-mail celebrating Rick's one-year mark. The next month will be difficult on Rick. We ask for your continued prayers and emotional support. He is really in good spirits. He wouldn't let you know if he weren't. He just never complains. He has been blessed with a very good first year and for that we are very thankful. Our hopes are that the Rituxin will place us back on that healing path again. 

Until laterÖÖÖÖ.. Love, Nance

 

Friday July 12, 2007

Dear Friends,

It's early in the morning. I couldn't sleep. I decided to write an update. I didn't want to disturb Rick; so, I decided to sneak quietly out of the bedroom. I was doing very well. I made it all the way around the bed; I opened the door without any squeaking; I slid through the narrow opening. Perfect. Then it happened. My pelvic bone slightly tapped the doorknob. That probably would not have awakened him. It was when I fell into the door with a loud crash when I heard, "Honey?" Poor Rick! Hopefully, he is sleeping again.

Yesterday was a long day at Johns Hopkins. The only parking was located some distance away from the building in which we were spending the day. We decided to use valet parking. My sister had driven, and she didn't care. We always hope for a space in the parkade under the building. We can always go back to the car if we need something. One never knows what to expect in the hospital. It will either be cold or too warm. We were both prepared for the usual cold. We had worn long pants and taken jackets. Donnalee arrived in a very cute seersucker shorts outfit. I loaned her a pair of my sweats. She had brought a jacket.

Traffic was not bad. We left a little after 8:00AM and arrived just after 10:00AM. We had not thought about valet parking; we have never used it. You don't have a lot of time. Cars are lining up behind you. We tried to grab all of our things and the car was gone.

Rick registered and we looked at his schedule. Great, there were no changes. He had labs for the blood work, a CT scan with contrast and two large cups of that dreadful stuff to drink, his check-up with Dr. Jones and our nurse practitioner Audra, a trip to the department for his first immunizations, and finally a bone marrow biopsy. This was all scheduled between 11:00AM and 3:00PM.

Donnalee asked about eating. He couldn't eat before the CT scan. With all the other things, he really didn't want much on his stomach. Most of the time we can't eat. You scan into the waiting area and you can't leave. It was then that we realized I had left my food in the car. Donnalee had left her book in the car. The car wasÖ.well, who knows where the car was. The book was minor; we never stop talking. J

Dr. Jones and Audra were running very close to the scheduled time. That's always good news. This is what we learned yesterday:

Dr. Jones does not think Rick has Graft vs. Host Disease He is very anemic and that must be treated The counts are still dropping slowly He wants him to begin Chemo (actually Rituxin for those of you who are familiar with it) next week He was going to call our oncologist at Hahnemann right then They will know more when they see the bone marrow biopsy results next week There is not a lot of information on Chronic Lymphatic Leukemia Rick will be at Hahnemann Monday afternoon I'm not sure what day they will begin the Chemo He had this chemo before and if memory serves me correctly it takes several hours for the infusion I'll know more after Monday

They had some difficulty with the bone marrow biopsy. They were able to do the aspiration. However, the bone was very soft and she kept getting fragments. She was about to numb the other hip when she finally got a decent piece of the bone on her last try. It was a very difficult time for Rick; he was exhausted.

After all that he had to go get four immunizations. I always stay with him for the bone marrow biopsies. I did not go back for the immunizations. I am still very needle phobic. I don't watch anything except Rick's face during the biopsy. I try not to listen to what they are saying about the procedure. Since he was right handed, the nurse wanted to give him the four shots in his left arm. They had taken the bone biopsy from the right hip.

By the time he was finished, it was after 4:30PM. Not counting the biopsy, he had been stuck six times that day. His left arm hurt and his right hip was sore. Then he had to get into the car and ride home during rush hour traffic. Fortunately, he was able to finally fall asleep. We walked into the house a little before 7:00PM. Donnalee still had a long ride ahead of her when she left.

We walked in the door to find dinner waiting on the stove - Rick's favorite take-out. The air conditioner was on, and the trash was out. I knew something was up when Tiffany called on the way home and was very interested in our ETA. Donnalee has some device in her car that actually tells you when you will arrive at your destination. Then there is some other advice that warns you about traffic and weather all over the place. I felt like I was in the twilight zone. Some woman's voice kept talking to us. I just got my cell phone back. I haven't had one since we returned from Baltimore. Jason's had broken and I had told him to just take mine for now. I don't drive; I never leave the house alone. It wasn't really important to me anymore.

We are home and quite exhausted. We would have liked more news, but that will have to wait until they have the biopsy results. I will let you know then.

Once again, thank you for your continued support, prayers, letters, cards, and phone calls. These are the things that keep us going. Sometimes you feel like you are back at the beginning again.

Until laterÖÖÖÖÖ

Love, Nance

Thursday July 5, 2007

We had our annual Fourth party yesterday. It's Jason's birthday. We missed last year - the first time since his first birthday; we were in Baltimore. I do remember that Jason, AJ, Nicky, and Alyssa drove to Baltimore to spend the Fourth with us. It was much better this year.

Thanks again for all the cards, e-mails, calls, and visits. They really help to keep our spirits lifted. We have been blessed with such a strong family and friend support system.

Until laterÖÖ..

Love, Nance

Tuesday July 3, 2007

Dear Friends,

Monday was a very long day. One of the doctors was out and they were really running late. Our appointment was at 1:15. We arrived at 1:00 and walked into our kitchen at 4:45. We were both tired.

Everything seems to be about the same. The counts are still dropping a little. His Coombs (sp ?) test came back the opposite of what it should be. That could be from the GVHD - I think. It is all becoming very confusing to me. We both studied so much prior to the transplant. We knew just about as much as any non-medical person could possibly know. We both stopped after the transplant. Now we are in uncharted territory. He is always upbeat, although he is very tired and has very little energy. I feel lost and helpless.

We go to Hopkins on July 12. He is scheduled for a CT scan, check-up with the transplant doctor, labs, and bone marrow biopsy. That should be another long day. At least their chairs in most of the waiting rooms are rather comfortable. Tiff and Ellie are driving us. I'm not sure what they will do for the day.

I'll let you know what we learn at Hopkins. We are looking forward to seeing many of the people who work there. After several months they become like family. I have lots of things to catch up on with many of them.

Now to my quoteÖ.thanks to Karen Thomas, Sandi Kornbau-Mitchell, Louise Barikian.

Sir Walter Scott - - - NOT SHAKESPEARE

Another work from this period, Marmion, produced some of his most quoted (and most often mis-attributed) lines. Canto VI. Stanza 17 reads: 

Yet Clare's sharp questions must I shun,

Must separate Constance from the nun

Oh! what a tangled web we weave

When first we practice to deceive!

A Palmer too! No wonder why

I felt rebuked beneath his eye;

The stanzas telling the story of young Lochinvar, excerpted from Canto V, particularly caught the public imagination and were widely published in anthologies, and learnt as a recitation piece.

One of the most famous quotations in English poetry is derived from Canto VI, XVII: 

Oh, what a tangled web we weave 

    When first we practice to deceive!

From Wikipedia, the free encyclopedia

All this research for Annie! However, I must thank all three of you. I now would like to read Marmion.

Love, Nance

Tuesday June 25, 2007

Dear Friends, 

Most of the test results are back. Everything was negative; that is good. We have one more test that we do not have results for yet.

Mostly, Rick is just very tired. The low red blood cell counts and platelets are most likely the cause. The GVHD is still present in his skin and intestinal tract. It is just bad enough to create constant discomfort. It is not bad enough to treat. Treating it could cause more serious complications. He never really complains about any of it. He is just discouraged because of the constant fatigue.

Rick's next appointment is this coming Monday. I will let you know how things go. They do not want to do any other testing because Hopkins will be conducting their tests on the 12th. There is no reason to put him through these things twice!

Until laterÖÖÖÖ..

Love,
Nance
PS Rick loves Annie!!!!!!!!!!!!!!

Tuesday June 19, 2007

Dear Friends,

Rick saw the oncologist today. She said everything looked good. The counts are remaining stable. Unfortunately, the Procrit didn't help, so they won't give that to him again. They are going to run some more tests. We will call Wednesday or Thursday for the results.

We are due back in Baltimore in a few weeks. We don't have the dates, tests to be done, or times yet. It's hard to believe that this is his ONE-YEAR check-up!

Saturday June 9, 2007

Dear Friends,

Yes, I know I am late again. I really thought I would get this update written on Tuesday. Sorry!!!!

Rick's appointment with the oncologist was just the same as last week. His counts have not changed. They are all low. During his last appointment they decided to try Procrit (actually it has a different name, but it does the same thing). This should help to get his red blood cell cout to rise. It didn't help. They tried the same thing this past Monday. If it doesn't help, they will not try it again.

My understanding is that the low red cell count is what makes him anemic and therefore, very tired all the time. I didn't understand that it also helped to carry oxygen to the brain. That may be the reason he is lightheaded many times. If anyone out there is in the medical profession, and I have this wrong, forgive me. I am doing my best to understand.

He still has the graft vs. host disease in his skin and intestinal system. It doesn't get worse and it doesn't get better. They really don't want to treat it unless it gets worse. I'm not sure where we are with this problem. I don't think they know.

We will go back to see the oncologist Monday a week from now. They call CLL the "watch and wait" leukemia. It seems like we are right back where se started.

Thursday was his appointment with the dermatologist. He has had a dry patch removed from his forehead several times. It is just over his left eyebrow. She remarked that it really wasn't much. Then she discovered that it went much deeper and farther than she had suspected. That and a mole on his shoulder that has been bleeding will be sent to the lab for biopsy results. At least his platelets were high enough for her to do the biopsy.

For anyone who may have not read the last update, Tiffany has a new dog. Her name is Annie. She is a three-year old, brindle who weighs fifty-eight pounds. She is my therapy dog, but she just doesn't live here. She has gotten me out of the house for the first time. I go for walks down Haddon Avenue with Tiffany, Ellie, Chewie (Tiff's other rescue mix two-year old little white male - justly named), and Annie. Many times we meet Jason, AJ, Nicky, and Alyssa on the avenue. I discovered that I was strong enough to walk her.

It's wonderful; everyone wants to pet her. I get to talk to everyone. Everyone asks where I got her. Then, I tell them the story. This has not thrilled Tiffany. Our walks take forever. She finally told me to just tell people she is mine. She was tired of hearing the story. The next people we met, Tiff said, "She's really my mom's dog, but the landlord won't let her keep her. The landlord would be my father." Well, that pretty much ended my long story!

Rick really does like Annie. He is just too tired and weak to think about a dog. The entire situation is not boding well for me. Annie is becoming attached to Tiff, Fran, Ellie, Chewie, and Moochie (their cat). They are all becoming just as attached to her.

Oh, there is one more little problem. The other night I ran into our neighbors when I was walking home from Tiff's house. They all asked about Annie. I told them the story. Then, I had to make sure that no one ever mentioned to Rick that I was hoping one day to keep her with us. "Oh what a tangled web we weave, when first we practice to deceive." (Please, please any Shakespeare fans out there tell me the name of the play from which this was taken. Sandi (Kornbau-Mitchell), I have spent the last half hour looking through one of the Shakespeare books you gave me.) I'm not getting this dog! It's all my fault; my grandmother told me never to lie!

Until laterÖÖ..

Love, Nance

Friday June 1, 2007

Dear Friends,

Please forgive me for taking so long to update you. It doesnít seem possible that things could be hectic here!

Rickís last visit to the oncologist was almost two weeks ago. His next appointment is this Monday.

His counts are remaining about the same. He is anemic. This time he asked about the Procrit for anemia. He is very tired and has no energy. They agreed that the injection could help. He made his next appointment for two weeks to check on the progress of the Procrit. Iím not sure if it has made a difference.

His test came back about the percentage of donor blood. It is still the same. The hope is that when they do the next bone marrow biopsy in July it will finally be 100%.

We had several questions; there were no answers. The doctor explained that there are no statistics to compare anything. Once again, it has become a watch and wait disease. He remains very positive and upbeat.

Last week, our friend from high school Jim Serock came to visit. They had a wonderful time talking. He really enjoys visits, e-mails, calls, and letters. It keeps him in contact with the world.

I havenít seen the Update page. However, Tiffany mentioned that there is a note at the bottom. We are expecting our new baby Annie on Sunday. Isnít she supposed to be HELPING us!!!!! (read on friends...let us see who may have inspired the greyhound thinking...Tiff)  Annie is a beautiful three-year old, brindle greyhound. It is really all my fault. I kept reading about how wonderful they are as therapy dogs. Annie is beautiful. I have been to see her twice. Tiffany picks her up on Sunday. Yesterday, we went to visit her. They let us take her for a walk outside. She is 58 pounds of sheer muscle. Weight lifting Ė muscle training Ė maybe. Therapy- are you nuts? She weighs more than half of me. I would have to make sure her leash was securely locked around my waist. Then I may try to hold her leash attached to a collar and a harness. Tiffany needs to sign onto their message board when she gets her. If she gets away, you are to call ASAP. They have an Amber alert set up. Everyone with a greyhound will be out looking for her. She wonít be difficult to spot. She will probably be the only greyhound dragging a skinny, tired blonde behind her! On the way home yesterday I asked Tiff, "Where is my therapy?" She thinks in about two years Annie will be ready. I mentioned that you could just go get a ten-year old greyhound. They are very, very tired and calm! That sounds more like me. Iíll let you know how things work out.

I will try to be better with the updates. Our computer is not in an air-conditioned room. It gets very hot up here!

Thank you so much for still staying in touch. Thank you for all of your prayers and kind thoughts. Thank you for the notes in the guest book. I really thank you for still riding this roller coaster journey with us. You can see why I donít like roller coasters. I just want to get off!!!!!

Until laterÖÖÖÖÖ. Oh, if you ever see a greyhound pulling a blonde behind her, PLEASE catch her and return us to our home!!!!! J

Love,

Nance

Monday April 30, 2007

Dear Friends,

Today was Rickís appointment with his oncologist. It has been a stressful two weeks. We were hoping that the blood test results would be back. This is the test that would tell us how much donor blood he has. The six- month results had been mixed. Instead of doing another bone marrow biopsy (BMB), they decided to ignore the one test result. Weíve been waiting two weeks for this new result. Well, there had been a mix-up. His blood sample had been sent to Hahnemann labs for the results. They had finally been returned because the original tests had been done in Hopkins. Today, they had to start with new blood tests. It will take several more weeks to find out how much of his blood is donor blood.

Stress two. His counts are still dropping. He is anemic. The rash from the graft vs. host disease is still causing skin problems. Hopkins confirmed stage I GFVD in the intestinal tract. They have still decided it is too soon to treat it. The doctor said that she thought a BMB would be a good idea. She has been watching the counts closely since the beginning of April. She called our nurse practitioner at Hopkins. Audra, at Hopkins, said that the drops were not that unusual. They would hold off on the BMB.

The news today was the same that it has been for the last several weeks. He is becoming more anemic. His feet and scalp are sometimes numb. This may never change. His energy level is very low. The itching and intestinal problems will continue.

Our doctor was at Hopkins a few weeks ago. She was at a seminar with our transplant doctor, Dr. Jones, and the son of the head of her department at Hahnemann. He works with Dr. Jones at Hopkins. They are pleased with the results they are seeing with the mini-haplo transplants (this is what Rick had). That was good news.

Those are the newest results on Rick. The rest of this update is just some funny anecdotesÖÖ

I went for my first walk since last April. We all walked down Haddon Avenue to get ice cream. On our way home, when we reached Jason and AJís corner, they said, "Nicky, arenít you going to give Meem a hug?" He was about six feet away from me. I think I remember crouching down for him. I remember seeing him take off and hearing them scream, "Nicky, noooooo." But, it was too late. Nicky threw his arms around me and I just fell over backwards with him on top of me. Fortunately, I am good at falling. Even though we were on the cement sidewalk, we both got up and no one was hurt! I wonít forget my first walk!

We were about a block away from home when we saw them Ė the "other Meem and Pop." When we were both well, we used to walk down to Haddon Avenue every night it didnít rain. Itís so wonderful; you get to know all your neighbors. The other Meem and Pop would always be sitting on their front steps. We would stop to chat for a few minutes. Thatís when we learned that her grandchildren called her Meem. Hence, "The Other Meem and Pop." We did learn their real names when they wrote to us on the guest book on the web site. This was the first time we had seen them in a very long time. There were hugs, tears, and thanks for answered prayers. What a joy it is to have such wonderful neighbors!

This August I will celebrate my 40th high school reunion. Rick and I attended the same high school. Weíve known each other since I was 15 and he was 16. My reunion is as much fun for him as it is for me. Last summer, while in Baltimore, we would talk about it all the time. That was our goal. We would both be well enough to attend.

Two weeks ago when we were headed to my physical therapy appointment, I spotted a dress boutique about two blocks before the PTís office. The dresses in the window were beautiful. I have wanted so badly to have a new dress for my reunion. However, given the fact that I donít leave the house except for medical appointments, I didnít think this was going to be possible. Besides, itís not like you go to a store and buy a dress; you SHOP. I already knew I didnít have that type of stamina. The last time I remembered shopping for dresses was in 1998, for our kidsí weddings. I know that sounds pathetic. I had decided that I would just wear the black dress I had bought for our trip to the Copa when we had taken Latin dance lessons. That idea was immediately destroyed when Rick showed me the pictures from our last reunion. They will probably be shown on a big screen during our reunion. I wore that dress five years ago to the 35th reunion. It was okay; I still had another little black dress I could wear.

On our way home from my appointment, Rick said, "Letís just stop and look." I was in sweat pants, sweat socks, old sneakers, and no make-up. I donít even know what my hair looked like. I figured they would either kick us out or just ignore us. I walked in apologizing for how I looked and explaining why I looked like I did. She didnít seem to care. I told the salesgirl what I wanted. And, I didnít want to look like the mother of the bride or a teen at a prom Ė tall order. And, I only wanted one particular color. I had already described the dress I wanted in detail to Rick. In fact, one night I commented, "Why canít they have a designyourdress.com instead of things like match.com? Well, the woman looked at me and said that color was going to be almost impossible. So, I just asked her to show me to the formal dresses. I took one look and saw it. It was the only one in the store. I was in love. It was even my size. I put it on and began to run around the store. I tried to explain to the woman that I hadnít been out in a long time. I ran around in this dress and a pair of sweat socks. I stopped in front of every mirror and twirled. Perfection! Rick finally pulled me down onto the couch where he had been resting. I told him I couldnít buy the dress. You donít walk into a store; try on one dress; buy that dress. Itís crazy!!!!! However, was this fate? Yes! In fact, I think I should call it destiny; that sounds even better than fate! We walked out with the dress. Now, all I need to worry about is being healthy enough to make it to the reunion. That is a major concern!!!!!

Last Wednesday, I wanted to surprise our friend with my new dress. He was sitting on the back porch with Rick. Rick had no idea what I was doing; he seldom does. Thatís what makes life with me so interesting; although that is not exactly how Rick may describe life with me! J I fixed my hair, put on make-up, and my new dress. No shoes or socks. I have a difficult time walking in my bare feet! I ran onto the porch and started a twirl intending to end of in front of both of them. Well, I did. Unfortunately, unbeknown to me, Rick had placed this new little vacuum cleaner perpendicular to the chair on which our friend was seated. I twirled and did a flip over the cleaner and ended up on my back on the floor. I jumped up and started checking my dress. I heard them asking if I was okay. "Who cares about me? Did I do anything to my dress?" No damage. Apparently, I donít have to go to our dinner covered in a transparent plastic bag. That was a great test. There will be no more testing; once was enough!

Well, I think I will stop boring you. There were more stories, but I will save them for the next update. I have a greyhound (dog - not the bus) story, and a great one with Rick and the kids and painting!

We are so thankful for all the thoughts, prayers, letters, notes of well wishes, and notes in the guest book. Those are the things that keep us going. This is a long healing process. Most of the time it feels like two steps forward and three steps back. I know it is really two steps forward and only one step back. Believe me when I tell you that you really learn to appreciate life and all the blessings you never think about. And, we are truly blessed!

Until laterÖÖÖ..

Love,

Nance

Monday April 16, 2007

Dear Friends,

Rick had his check-up today at Hahnemann. It has been two weeks since his last one. I wasnít happy with the news we were given then, so I decided to wait until his next visit. I liked the news much better today.

We saw our regular oncologist. His counts were almost the same as they were two weeks ago. However, I asked the same two questions today. When do you think the graft vs. host will go away? She wasnít sure, but fairly confident that it would. They are not treating it because it is not serious at this point. The hope is that is will go away on its own. Will his counts come back up to safer numbers? Yes, she is very hopeful that they will. The truth is that they do not have any statistics on which to base answers. She was giving us her best-case scenario.

He also had a test today to find out how much donor blood he has. His last test showed that he had 92% donor. She did indicate that it could be as low as 50%. They really do not know. This is still a phase-two research trial. It will take about two and a half weeks for the results. If the percentages are low, she may want to have another bone marrow biopsy done. I donít know if we would have to go to Hopkins for that. Things are never dull here.

Two weeks ago when I asked my two questions, I received different answers. Our regular doctor wasnít there. I was told the counts may never come up Ė but donít worry. Heís not in the danger area yet. And, the graft vs. host may never go away. I know they were being cautious. The truth is there are no cases on which to base their answers. Our regular doctor has much more experience. She also works very closely with our doctor at Hopkins.

Rick wants to go to the grocery store. I am against it. It is one of the worst places for germs. I lose; he is allowed to go. I still donít think it is a good idea.

Saturday, April 20, 2007

I am really getting bad. Things just seem so hectic anymore. We have appointments every day of the week. Iím just tired.

Rick called the oncologistís office yesterday. He is having some difficulty breathing. The Fellow (doctor) who had just seen him on Monday agreed that it is most likely due to his low counts. If he develops any problems this weekend, we will just call Hahnemann. The same Fellow is on call all weekend. They would probably have him go directly to the ER. There is an injection something like Procrit that they would give him. Unless he has other symptoms, I donít think there is any reason to keep him. Otherwise, we will go to the office during regular hours on Monday.

Rick is sleeping right now. The low counts make him very tired. I think I will close now. I will keep you posted; I promise.

Until laterÖÖÖÖ

Love,

Nance

Sunday March 25, 2007

Dear Friends,

Last week was filled with doctor appointments and tests. We are just glad it is over.

Thursday was the worst. Poor Rick was scheduled for a test at Hahnemann. We had to be there at 8:00AM. His procedure was scheduled for 9:00AM. I had a doctorís appointment at 2:00 PM. I know that doesnít sound like a problem. However, my experience has been if something can go wrong, it will.

Wednesday I made plans to get a ride home from the hospital if things were delayed. Tiffany would have to drive back to the hospital and stay there until Rick was ready to come home. My father would come pick me up to take me to the doctor.

Well, we didnít need the second plan, but not because there were no problems! Someone messed up the schedule and sent the wrong patient to Rickís surgical room. Our doctor then had to wait until 10:45 for another room. Fortunately, he was still out in time for us to get back home. The problem was that Wednesday night he had developed red spots in the back of his throat. I had wanted to go right up to the 15th floor and see his oncologist.

We stepped out of the elevator and walked right into Rickís oncologist. She was waiting for the elevator. She told him to go right into the office and have one of the doctorís look at his throat. We were in and out in about ten minutes. The doctor told him that since he had no fever, they would wait another day to decide about antibiotics.

We then called Tiffany and she came over to pick us up. She dropped us off about noon. She said that she would return about 1:45 PM to take me to my appointment.

I already had a headache from having not eaten since lunch the day before. The long wait in the hospital had not helped it. When I walked in the door I took two Tylenol and fell asleep on the couch. Rick woke me up five minutes before Tiffany arrived to take me to the doctor. I think I was still half asleep in the car.

The appointment went well. However, she wanted me to go right to South Jersey Radiology to have my ankle x-rayed. This was the second time since we had returned from Baltimore that I had fallen on that ankle. It was slightly swollen.

Poor Tiffany. She and Ellie drove me directly to SJR. The good news was that my ankle was not broken. The bad news was that I still had to purchase an air or gel cast for my ankle. The doctor was concerned about permanent damage to the ankle. I tend to fall a lot. Rick has just become used to the falling. All day long he hears a crash and then, "Iím okay." Mostly, the cast is just annoying. I think the doctor did this to me just to keep me out of trouble. It keeps me from climbing up on things and through things in the attic and basement.

Friday morning Rickís throat didnít feel any better. He called the doctor. They decided to phone in the prescription for the antibiotics. Within a day he was feeling better. It was really good that he had seen his doctor on Thursday. The antibiotic probably saved us a trip to the ER on Saturday.

We are still waiting to hear about his test results from Hopkins. I will let you know when we receive them. The rash on his body from the graft vs. host is mostly under control. He has gained some weight and his hair is still very, very dark. As Tiffany would say, "We have Poppy up and running!" J

Until laterÖÖÖÖ.

Love,

Nance

Sunday March 11, 2007 

Dear Friends,

I thought this might be a good time to write an update. The next two weeks will be filled with doctor appointments. They could be busy. Some of them are mine and some of them are Rickís.

We will begin the week with two appointments on Monday. I have one with a new specialist in Philadelphia. Rickís oncologist arranged it for me. I do keep hoping that someone will be able to explain the constant pain and maybe even get rid of it!

Monday afternoon Rick has an appointment with his oncologist. This is the appointment that we hope is just standard. We donít like surprises. Weíve had enough in the last few weeks.

On Friday Rick saw the GI specialist that his oncologist recommended. This appointment is to check to see if the graft vs. host has moved into the GI tract. I think it will take a while for the reports. His doctors at Hopkins want the slides of the biopsies sent there. We donít know what they will do if it has moved into his GI tract. On Monday he will call to make the appointment for the test.

We really must thank Dr. Crilley, Rickís oncologist, for getting both of our appointments on Monday. The specialist I am seeing Monday morning had nothing available for a few weeks. He is leaving this week for vacation. When Rick mentioned Dr. Crilley, the nurse spoke to the doctor. He told her to have me come in at 9:15 AM on Monday. Then Rick called his specialist. Once again he mentioned Dr. Crilley. Once again, she had spoken directly to the doctor. Rick saw him the next morning Ė last Friday.

I did make a mistake in my last update. Rickís CT scan is this Wednesday morning. I donít think those results will take that long. He has developed a cough. They need to see if the nodes in his lungs have made any significant changes.

On Monday he must call the GI specialist and make arrangements for the testing. He is hoping to schedule the test for the following week. I think that will depend on what his doctors think about waiting another week.

Rick has spent hours researching my pain. He has found a Dr. Wise at Stanford who seems to describe exactly how I feel. The reason he spent so much time researching the problem Ė he suffered from the same pain. Unfortunately, a trip to California is not that simple. Rick is going to do some more research to see if there is anyone closer to us trained in this protocol. I will keep you posted on what he finds.

If anyone is familiar with Dr. David Wise, Dr. Rodney Anderson, orTim Sawyer, please let me know (Stanford University). Dr. Wise also addressed the National Institute of Health in Maryland. He discussed the Stanford Protocol for Prostatitis/Chronic Pelvic Pain Syndrome.

I should have sent this to Tiffany when I had finished the last sentence!

Tiffany and Rick were outside playing with Ellie while they waited for our Acme order. I, of course, was inside getting myself into trouble. Earlier, Ellie had been playing in her favorite costume. I thought it would be a good idea to store the costume and accessories all in one place. Itís important to understand that one of the accessories is a blonde wig with a great bob cut. This afternoon I had finally taken the time to try to brush and style the wig for her. It looked pretty good when I was finished. So, of course I needed something to hold the wig to keep it styled. I looked over all the things on the bookshelves in the foyer. They are filled with the kidsí toys. Then they extend on the floor all the way to the front door. My eyes were drawn to a tall, plastic cylinder that had once held a doll. Perfect! The accessories could be placed inside the cylinder and the wig would sit right on top! I gingerly placed my foot in between some toys on the floor and reached for the container. No problem. Then, as I backed up I must have bumped into one of the little wooden rockers. I only remember falling and doing a somersault. I landed on my back, but I still had the container. The rocker had been pushed across the floor to the other wall. I tried to bend my toes and just kept repeating, "Please donít be broken; I donít have time for a trip to the hospital."

I was trying to walk it off. I told Tiffany when she came inside. Since there are no bones sticking out, I figure it can wait until I get home from my doctorís appointment tomorrow morning. I will call my doctor and ask for a referral to South Jersey Radiology. Tiff thinks she can squeeze that trip in between my appointment and Rickís in the afternoon. Right now I am keeping ice on it. Hopefully, tomorrow it will be fine!

Things are never boring here! J

I will write again as soon as I have any news: CT scan Ė GVHD Ė my doctor Ė broken bones etc. The night isnít over so there could also be some new things.

We are still very grateful for all of our friends who are still thinking of us and saying prayers for us. We love reading your notes in the guest book, our e-mail, and cards. It is a constant reminder that we are not alone. Thanks you for being there for us.

Until laterÖÖÖÖ..

Love,

Nance

Wednesday March 7, 2007

Dear Friends,

Once again, I find myself apologizing for late updates. Really, I do have a very good excuse for this one. Rick saw the oncologist last week. There were many questions, but no definitive answers to give.

There were lots of phone calls to several doctors. There were phone calls and e-mails to people at Johns Hopkins. The general consensus was that the GVHD had entered the GI tract. This is something that must be confirmed quickly. The next decision is whether or not we have to go back to Hopkins for the tests.

Rick saw his oncologist at Hahnemann on Monday. This is what we now know:

1. The tests can be done locally Ė the slides will be sent to Hopkins for evaluation. The decision to treat the GVH will be determined after the tests are completed and evaluated.

2. He finally has an appointment with the GI doctor next week Ė consultation only. The appointment for the tests will be determined then

3. He has developed a cough Ė he has a CT scan on Friday; they need to see if the nodes in his lungs have changed

We havenít been able to make any plans for the last two weeks. Itís not that we actually go anywhere, but we are running out of food. We have been ordering from the Acme on line. They deliver everything right to our back door. Tiffany or Tiffany and Fran are always here to unpack things and put them away. We couldnít place an order because we had no idea when we would be home. We donít schedule most doctor appointments; we go when they tell us to go. Tiffany has to drive, so itís not like she could be here for the order.

We went to the Collingswood Athletic Hall of Fame dinner on Saturday night. It was the first time we have been out socially since my Kris Kristofferson concert in September. Susan Pisano invited us as her guests. Susan has been one of my rocks during the last few years of treatments. It was a wonderful evening. We saw so many old (NOT AGE!!!) and dear friends. We were there to celebrate Bill Carmodyís induction for the class of 1967. Bill, you made us laugh and you made us cry when you spoke. I was thrilled to be a part of your night to shine. You are quite special! Congratulations!

Tiffany will be happy; this is short. I do want to thank everyone for the phone calls, e-mails, letters, and notes in the guest book. I feel like this has gone on forever, but the support we receive keeps us going. We are truly blessed to have such good friends and a family that takes care of us.

Until laterÖÖÖ.

Love,

Nance 

Monday February 19, 2007 Ė

Sorry this update spanned an entire week. Some weeks are just more difficult than others. This has been one of the crazy ones!

Dear Friends,

It has been an entire week since Rick saw the oncologist. The doctor told him he could have this week off. I must admit that although we are glad to have a week without a doctorís appointment, it is very stressful. Rick still panics a little on Fridays. A holiday weekend like this one is the worst. Our oncologistís office is closed today.

Rick is still dealing with the rash from the GVHD (graft vs. host disease). The cream and the medication help, but not a lot. The rash almost disappeared and then came back with a vengeance. The doctor has referred to it as acute and not chronic. That is the better GVHD to have. He could not give us any idea how long he would have this. If it didnít itch, they would not even treat it. They would just watch it for any changes. He also made a comment that left us both speechless. He said they were not positive it was GVHD. That was not what we had understood from our regular doctor. There is a huge difference if this is just an allergic reaction to one of his meds! His counts continue to be just about where they would expect them to be. Mostly, he is just very tired and uncomfortable. He never complains. I know we both left the office very confused. These are issues we sometimes avoid discussing.

We are going to Collingswoodís Athletic Hall of Fame dinner the first weekend in March. Several weeks ago a friend Denise Dager (class of í67) asked me if I would like to go with her. I asked Rick and he said he would like to go. It would be fun to see everyone. Another friend Susan Pisano (class of í67) had the tickets. She graciously invited Rick and me to come as her guests. I donít know what I was thinking. I donít leave the house except for doctor appointments. Sometimes I am in so much pain, Tiffany has to go with Rick. The good thing is that the dinner is a five-minute drive from our house. I am used to sitting for hours in the doctorís office. However, I manage by taking off my shoes and folding up on the chair, wrapping my arms around my legs, and my head resting on my knees. I will let you know how we do at the dinner.

I have had many people, even family members, ask how we are surviving. Donít I have cabin fever. Unless there is a doctorís appointment, I rarely set foot outside the door. I try to explain that I am so weak, tired, and in so much pain that the thought never enters my mind. Rick will make an occasional trip to a store that is close. He will drive short distances; I wonít try driving yet. I donít have the energy or desire to try to go with him. We are very fortunate that we simply enjoy each otherís company. We have been together twenty-four hours a day seven days a week since the end of last May. The two exceptions were two hospital stays when they wouldnít allow me to stay. Even then, I was there when he woke up and until he was ready to fall asleep. When you are married to your best friend whom you have know since you were kids, you have a lifetime of memories in common to talk about. We are simply content to be with each other and enjoy each day.

This is for anyone who read the update about the gloaming (the one for which I later apologized). Tiffany claimed it made her nauseas. However, I receive phone calls sometimes just as the sun is setting and the sky is immersed in bright hues of pink, purple, blue, peach, and gray. Iíll answer the phone and hear our granddaughter Ellie, Tiffanyís daughter, squealing, "Meem, look at the gloaming!" I race to the window and we watch together. We also sing our song "In the Gloaming" while we watch and name the colors we see. Tiffany lives about seven houses down the street from us. I asked her if she could see the sunset from her house. We have a spectacular view for both the sunrise and sunset from ours. Yes, they have a beautiful view from one of the windows. Apparently, Ellie checks it constantly now.

Sorry, I have to stop here. To be continuedÖÖÖ..

Fast Forward: Wednesday

On Monday I believe I was talking about Rick making short trips to the store. Well, he was making one of those trips the day I was writing. He had seen something on sale at Staples or Office Depot. He was going to buy it. Neither of these stores is more than ten minutes from our house. The phone rang and it was Rick. He had been in a minor accident in the parking lot. No one was hurt; the woman insisted on calling the police. He hung up before I could get any details; the police had arrived. He called when everything was done and told me he was on his way home. It has been a stressful two days, but the insurance company has been called and we are going to try to forget it.

The kids think we should consider curtailing Popís little trips. They have all joked to him about it. Truthfully, they would rather he stop making these little excursions.

Right after Rick arrived home from his little fender bender, our nurse at Hopkins called us. They had received the slide of the skin biopsy and completed their tests. They confirmed the graft vs. host. This was good news. She discussed the CT scan in a few weeks. This is to make sure that the nodes they see are not growing. She also discussed the other test that will be repeated at the end of March. This is necessary because of the mixed reports from the bone marrow biopsy.

Monday afternoon was an emotional roller coaster ride. I hate roller coasters; I do not ever ride themÖ.NEVER! It was bad news, good news, unsettling news. We are supposed to be resting, relaxing, and trying to keep stress out of our lives. The doctors have agreed that the leukemia, bone marrow transplant, and dealing with the graft vs. host disease add up to more stress than is normal. Apparently, someone Ė I will not mention any names Ė feels a little more adrenaline needs to be added to keep things more interesting. I guess you could look at it this way Ė the accident, dealing with the police, dealing with the other couple, calling our friend who is a lawyer for advice, and calling our insurance company took our minds off the health issues!

Rick just came upstairs to tell me that he needs to get a copy of the accident report from the Cherry Hill Police. He just needs to go pick it up. I just finished writing about trying to keep him out of the car. Talked to Tiffany and she will be driving! Okay, breathing is back to normal again.

Sorry, I have to stop again. Rick need to have the cream for his rash applied. Then, I need to get ready for our friend who is coming with lunch. Trying to look human takes me quite a while.

Okay it is time to end this now. We are going over to play with Nicky and Alyssa. AJ has a dinner and sermon for her Ash Wednesday service tonight. I think she also must set up the church for the dinner. Someone has the flu. It was only last night that Jason had to carry her to the car and was going to take her to the hospital. By the time they reached her parents who were going to watch the kids, she was able to reach her doctor on the phone. She is scheduled for a test tomorrow. Things are never dull here!

 

SorryÖ.Fast ForwardÖ..Friday

I do promise to end this and forward it to Tiffany to publish. Yesterday was just a total wash. Rick was not feeling well. He had no fever; he did have chills.

We were going to watch Nicky and Alyssa while AJ went to South Jersey Radiology for a test her doctor had ordered. There was no way that Rick would be going anywhere. I had him resting comfortably in bed. I cannot be alone with any of the grandchildren. If I am hit with and IBS attack, I would be completely unable to watch them. Tiffany said she and Ellie would go watch them. I wanted to go along. Good news, AJ is OK!

Rick was just getting out of bed when I returned home. I checked and he was running a low-grade fever. Our oncologistís office was still open so I called. Since the fever was low, the doctor told us to keep an eye on it. If it spiked after hours, we would go to the ER. Otherwise, he should call the next morning if he was still not feeling well. They would just have him come over. He had not had any signs of the fever today. I hate Fridays. We will both stress until Monday.

I am going to end here. I have been in too much pain to be at the computer for any length of time. I am trying to decide on wine, Tylenol with codeine, or just deal with the pain. Iíve already tried everything else I can thing of doing. I have been curled up in a ball most of the day. I just cannot believe that I am into year two with the pain.

Iíll let you know how Rick makes out at the doctorís on Monday. At least I think his appointment is Monday.

Until thenÖÖÖÖÖ

Love,

Nance

Sunday February 11, 2007

Dear Friends,

I really must apologize to anyone who is still keeping up with Rickís progress. Itís been a week since I have written. I will try to do better, but sometimes it seems that as he gets better Ė I get worse! Iím working on it!

Rickís reports from the oncologist have been good. Most of the rash is gone. It is still on his wrists, ankles, tops of his feet, back of his neck, and ear lobes! He has told me he just wants to use the anti-itch prescription cream for where it is the worst. It is a strong drug, so I understand. I donít tell him this, but by the time I am done I have pretty much covered his entire body.

I donít think he has any intention of telling me when the itching really stops. He is enjoying this too much. He needs the prescription cream twice a day. He needs the Lubriderm cream at least twice a day, too. His skin is very, very dry. I have a routine. First, I use the prescription cream. Itís terrible when I watch his face. He winces because the cream is so cold. Then I wait half an hour before I apply the regular cream. Iíve discovered that the cream feels better if it is warm. I wrap the container of Lubriderm in a heating pad for the half hour. Now, I see smiles when the cream hits his skin. You can see the problem I have created.

This morning, well around noon, the phone rang. Rick was lying at the end of the bed and I was putting the prescription cream on him. He canít move and I have a latex glove on my right hand. I need to be careful with this cream. Unfortunately, we canít find the phone. I do know that it is still in the bed somewhere. Yes, the bed hadnít been made. Finally, Rick tells me the phone on his nightstand is hooked up. We use the portable phone; the base is in the upstairs hallway. I usually take it to bed with us and forget it. I grabbed the phone and answered it. I hear Jason ask, "Arenít feeling too well today?" I explained that I wasnít but that wasnít the problem. He needed to ask Pop a question. I explained the problem Ė the phone would never reach Rick. I told him to hold on for a minute. I laid the receiver down to help look in the covers. This way I could sort of shout to Jason. Rick yells, "I found it!" A few seconds later I hear, "Never mind itís the remote." Then he tells me he has found it, but we canít unravel the sheets, covers, etc., to get to it. He can just feel it. Finally, with some help from me, we got it. Jason was able to ask his question. By the time he was off the phone, we were both laughing hysterically. How itching all over your body and dealing with graft vs. host can become funny could only happen here!

He has regained almost the entire range of motion in his right arm. His blood tests have been good. The counts that are a little too high or a little too low are expected due to the graft vs. host. I havenít been able to go with him to his last few appointments. The doctors know Tiffany as well as they know me.

Last weekend my brother and sister-in-law had a party for my fatherís 85th birthday. I woke up feeling terrible that morning. However, I really felt I had to go. I took a pillow and laid down in the back seat. Tiffany did the driving. I made it through the party without moving from my chair in the kitchen. I slept for almost 48 hours after the party. According to my psychologist Ė WHAT WERE YOU THINKING! I didnít remember most of the two days after the party. It is very frustrating. No matter how hard I try to get better, I donít seem to make any progress.

Our neighbor Tammy came over today to see the Christmas card she and her husband Dave had sent us. For those of you who donít remember, it is a Thomas Kinkade card. I love it. Rick placed it in a frame to protect it. I was afraid that it would affect the glitter and how the card comes to life with light. It didnít. Iím not sure how many times a day I go look at the card and feel happy. I am going to find the perfect place in the house for the card. The sunlight will be critical for the effect. You just canít place it anywhere; itís special!

I think it was a good idea for Rick and me to get sick now. We are both young enough to take care of each other. Now we will have this behind us for our golden years. Yes, Tiffany, I know at this point you are probably thinking Ė they would both be dead and buried by now if they were left alone. Sad, but true I am afraid.

It still feels like an uphill battle for both of us. Fortunately, we have family, friends, faith, and laughter. For those of you who are still following this journey, we thank you for your prayers and faithfulness. Please sign the guest book whenever and as often as you like. It has kept us going and lifted our spirits. I will tell you that I long for the day that the journey is behind us, and our lives will return to normal. Until then, I will keep this journal. Some day Rick and I will read it to see what we survived.

Until laterÖÖÖÖ

Love,

Nance

Sunday February 4, 2007

Dear Friends,

Sorry I havenít kept you up to date. The caregiver seems to be worse than the patient. So, this will be short.

The doctor is happy with Rickís progress. The graft vs. host disease is mild Ė their words. Rick, Iím sure would not agree. His entire body itches. His counts are remaining stable. That means that the disease is not reaching his organs. They are monitoring his liver functions closely. They do not want to treat it unless it becomes serious. It is better for the patientís body to be able to do it on its own.

Tiffany had to take Rick to his appointment on Thursday; I was just too sick. She finally met Dr. Topolosky. Here is a first Ė he said he could see her mother in her. (take a look at the picture page. Look at Tiff and at me - does anyone see any resemblance? I was flattered, but I canít see anything!) She told Rick she understood why we liked him so much.

One funny story: I donít remember exactly what had just happened. Rick was sitting in his recliner and I was lying on the couch. He said, "Nothing could be as embarrassing as when I took off my shirt in front of Audra and had that elastic brace on." I just cracked up as I replied, "Except reading about it in an update!"

I will try to stay more on top of things. Rickís next appointment is Tuesday. Until the graft vs. host disease is gone, he will probably keep going to the oncologist twice a week.

Meanwhile, I am trying to keep my meltdowns to once or twice a week.

Until laterÖÖÖÖÖ

Love,

Nance

Sunday January 28, 2007

Dear Friends,

This will just be a short update. Mostly, it is for Rick. He will have enough of the difficult updates to read. This is to make him laugh. Tomorrow he goes to the oncologist. So, I decided it was best to write the little anecdotes now.

On New Yearís Eve I decided that even if we couldnít really celebrate, I was going to get dressed up for Rick. I am out of the habit of using much make-up. I havenít looked at my make-up for special occasions for the longest time Ė years? Well, this was going to be special. I am too weak to stand in front of the mirror to put on make-up. I keep a big towel folded near the door. On the back of the door is a mirror almost the same size. I must sit there to get ready. I am addicted to glitter Ė in the hair, on the body, on the face, on my nails, on the eyelashes. There is something about the sparkle that just makes me happy. I looked through my drawer trying to find the things I wanted. First, glitter eye shadow. I was having the worst time applying it. It was sticky. I figured it was probably old and not good anymore. I found a washcloth and proceeded to remove it. Even that was proving somewhat difficult. I finally put on my glasses and looked at the eye shadow. I had been applying lip gloss to my eyes! You canít apply makeup with your glasses on and I canít see without them. I never change what I wear for makeup. When I am finished, I put my glasses on and see how I did. Thatís what I can expect when I stray from the known!

My 40th high school reunion is coming up this summer. Our Collingswood Class of 1967 is very special. So many of us still have our best friends from school. Some of us have maintained friendships since kindergarten. The dinner on Saturday is formal/semi-formal. I tell you this so the next story isnít really that crazy.

When I heard about the formal part of the dance, I was so excited. I had bought this formal gown in 1998. I had been looking for formal gowns for both of our kidsí weddings in 1999. Unfortunately, this gown wasnít right for either one. However, it reminded me of the beautiful blue gown that Princess Diana wore on some cover of a magazine. Rick was patiently sitting in a chair while I tried on the gowns. I had to try the blue one first! All I could do was stand on the platform in front of these three mirrors and keep twirling. It floated. I finally broke down and tried on the Christmas plaid taffeta and velvet gown that was perfect for Jason and AJís December wedding. I went back to change and couldnít resist. I had to wear the blue gown again. Rick is the most patient man on the face of the earth! I was in love and I couldnít take it off. Rick looked at me and said, "Get them both." In my defense, they were both on a great sale at Strawbridgeís in the King of Prussia mall. And, I also had a coupon. The gown has been hanging in the attic since then. Okay, I tried it on a few times. When I thought about the formal dinner Saturday night, I knew what I was wearing!

About two weeks ago, I finally found the strength to go up to the attic and get my gown. I was going to surprise Rick. When I walked out of my bedroom, I walked right into Jason. He was taking something up to the attic for Rick. This is what I love about our home. Jason sees me in a formal gown and says, "I didnít know this was formal." He never even asked why I was wearing it; he just kept walking. I wonít be wearing it to the reunion. Somehow, I donít fill it out like I did then. It just doesnít look the same. L

Iíve bored you with enough. Itís just that Rick will enjoy remembering some of the fun times Ė even when he was sick.

His rash is driving him crazy. He also has no feeling in his toes and the area just below his toes. He is also experiencing some of the same numbness in his fingers. Weíll see what the doctor says tomorrow.

Until laterÖÖÖÖ

Love,

Nance

Wednesday January 24, 2007

Dear Friends,

I think before I write anything else, I am supposed to apologize for my update about the gloaming. I think it was written at the end of December. It was the only update I let Rick read. It had nothing about his health. Well, Tiffany read the update. The phone rang and Tiffany asked, "Where are you?" I told her we were in bed watching TV. She said, "Look at Poppy, gag, and put your finger down your throat." So, I did. I told her, "Pop has no idea what I am doing." She asked me if he had read the update. He hadnít. She informed me that no one calls home and says to run and look at the gloaming. She finds our relationship just shy of sickening (she would take out the "just shy" part). By the way, when he did read it, he loved it! (PS. Yes this may seem a little harshÖbut you only read the updatesÖyou don't have to live withÖeven eight houses down fromÖ these two teenagers in love. No one would ever believe that 23 years into marriage, not counting their teenage years or dating years, these two still act like they just started dating. Constant love notes, smooches, giggles etc. etc. You know what I meanÖthe couple you see on the street all lovey dovey and you say to yourselfÖ they obviously just started datingÖgive 'em a couple of years together." Well, Nancy & Rick are still that couple!Ö.Tiff)

I am sorry that I have taken so long to write. Mostly itís because I canít tell lies and Iím not good at hiding anything. Iíve been told I donít have a poker face; apparently, I donít have poker fingers either. J First, things are okay now.

After our long, stressful Martin Luther King weekend, Rick saw the doctor on Tuesday morning. He had a cold, but seemed to be okay. Wednesday we heard from Audra at Hopkins. I knew when she wanted us both on the phone it wasnít good news. The one test was very good. The biopsy report was just the opposite. They were going to have the biopsy reports done again. The third test results were not completed.

We made the decision to only tell the kids. If the news came back good in another week, it wasnít fair to make everyone worry. Hence, no updates. It was a long week!

The next day, Thursday, Rick developed a rash. He was just not feeling right. I called the doctor and talked to the Fellow we had seen at his last visit. Since he had no fever, the doctor said he didnít have to come in. However, if it got worse or he would feel better seeing the doctor Ė no problem. On Friday I talked to the doctor again. Weekends always scare us. He told us the Fellow and doctor on call all weekend. We know them both very well and that made us feel better. We survived the weekend.

We saw Dr. Crilley on Monday morning. The rash was worse and had spread. Aside from that, the blood tests were good. However, she suspected graft vs. host disease (GVHD). She called the dermatologist directly across the street from the hospital. We went right over. She did a skin biopsy. Rick said it wasnít painful, but he left with stitches. Then we headed back to Dr. Crilley. She had been trying to get his CT scan results. We finally called Tiff and went home. That was five hours in Philadelphia. We were both exhausted.

Late Monday afternoon we finally got results. First, we heard from Audra. Dr. Jones was talking to Dr. Crilley at the same time. The third test came back with great numbers. Dr. Jones had decided not to worry about the biopsy report. He thinks they just hit a cell filled with CLL cells. They will want to see him in three moths to run one of the other tests just to be careful. That can be done from a blood test.

The skin biopsy came back positive for GVHD. That is good and bad news. Fortunately, Dr. Jones Ė who is one of the top CLL transplant doctors in the country! Ė knows Dr. Crilley very well. We wonít have to go to Baltimore to have the rash checked by their team. He trusts our doctor.

Rick is covered in a rash. It isnít on his face, palms of is hands, or soles of his feet. It is everywhere else. The itching is driving him crazy. They donít want to treat it yet. We will start going back to Dr. Crilley twice a week. I am still researching GVHD. A little is good, none could be a bad sign, too much can be fatal. Acute can be really bad; chronic may be worse. That never goes away.

Just when you think you can relax and let down your guard, it begins all over again.

Once again, no time for the funny stories. I donít think I told you about dressing Rick up like Aladdin. Best of all, I have pictures! Iím not sure you are tired of reading. I promise to keep you posted. Now, we have a whole new disease to watch. CLL is called the watch and wait leukemia. I canít believe that it is still living up to its name!

Until laterÖÖÖ..

Love,

Nance

Sunday January 14, 2007

Dear Friends,

These last two weeks have been like a roller coaster ride Ė ad we didnít enjoy the sudden drops! The good news is that we have survived them. Iím not even sure where to begin, so I will tell you about Rickís appointment at Hopkins first. Next, I will tell you about yesterday, I am still recovering from then!

The news was good. The blood tests were just what they expected. He is progressing as expected Ė actually even better and faster. We were unable to get the results from the CT scan. The bone marrow biopsy results can take up to two weeks.

Tiff, Fran, and Ellie drove us down. Well, Tiffany did the driving. J We left at 8:30 AM and were at Hopkins at about 10:15AM. Most of the day is spent sitting and waiting. We sat in the waiting room for the CT scan for over two hours. We would have still been sitting, but Audra our nurse practitioner saw us. It was 3:00 PM. Rickís bone marrow biopsy was scheduled for 3:00. Audra came in, called the tech in the back, and Rick was taken back five minutes later. The test takes half an hour. Audra met us as soon as he was done.

We went right to the room for the biopsy. Audra then explained the problem. The biopsy techs are allowed to leave at 3:30. She was afraid that she would not be able to get a tech. She did. Audra did the biopsy; that had been Rickís request. He survived the biopsy without too much pain. Unfortunately, the first spot Audra found did not have a good sample of the marrow. She had to do a second one. Iím not sure who felt worse Ė Audra or me. Rick is a very good patient.

Tiff and Fran had take Ellie to the aquarium for the day. She loves it. It is also empty this time of year.

When I called Tiff to tell her we were finished, she told me she was about five minutes from the hospital. Iím still not sure how she does it. We were on our way home at 4:30 PM. We arrived in Collingswood about 7:30 PM. There had been a terrible accident on 95. We sat for about an hour. Needless to say, we were all exhausted!

While we were in the waiting room at Hopkins, I had placed my headset on and was listening to calming music. Rick was reading. He asked me a question and I answered. He had this weird look on his face. I said, "Am I talking really loudly?" He just shook his head yes and began laughing. I ripped the headphones off my ears. All I could do was laugh, too. Many of the people around us were also enjoying my faux pas. Itís good that I am used to people laughing at me.

Rick caused the next laughter. His PT person has told him that he needs to work at keeping his shoulders back. I mentioned it was a shame he wasnít a woman; they make underwear for women that does just that. Well, I called a medical store, and apparently they make them for men and women. Rick got an elastic brace that he wears several hours a day. It has helped him. Well, he forgot to take it off when we arrived at the hospital. Audra had called us back to the examining room. She asked Rick to take off his outer shirt. He had a t-shirt on under the long sleeved shirt. Oh, how I wish I had a picture of Audraís face when she saw the brace. She could not contain the laughter. She asked, "What are you wearing?" Poor Rick, he struggled to get out of the device. I had to help him. Audra said, "It looks like a girdle." I told her if she thought today was funny, she should watch him try to put it on. I wait for a while until he gives up, and then I put it on him. In his defense it is not an easy thing to figure out.

I think that covers Thursday at Hopkins.

Last night was the big Eagles game. The entire family was excited. I had planned on watching the entire game with Rick. Unfortunately, my IBS had other plans. I spent the first hour lying on the bathroom floor in terrible pain. As soon as I was able, I stumbled downstairs to stay with Rick.

He had a thermometer in his mouth. I immediately rushed over to feel his face and head. He felt like he was burning up. His temp was 99.4. We need to call the hospital at 100.4. I call at 100. He had a cough and his sinuses were bothering him. He assured me he was fine. Of course, I know he isnít. We are four-tenths of a degree away from a trip to Hahnemannís ER.

I donít want to alarm him. Fortunately, he is very involved in the game. He also told me that Jason had called and was coming over to watch the game with him. The kids were both asleep at his home. That took some pressure off me.

I am out of practice. I used to keep a bag packed at all times for emergency trips to the hospital. Thursday, I actually had to unpack the backpack so we could use it for our trip. I am not kidding when I tell you that I have not been able to unpack from our summer in Baltimore. And, I really didnít unpack this time. I threw the stuff in the other suitcase that was sitting next to it. At least the backpack I needed was unpacked for me this time.

I began packing everything we would need for the hospital. I pack for Rick and for me. I always hope that he will have a private room and I can stay. By then, Jason had arrived and I could hear them screaming downstairs. I had curled up in a ball on the floor in the hallway upstairs. I felt paralyzed. I was in terrible pain and there was so much left to do. There was also and underlying issue.

I felt as if we had come full circle. It was last January, almost to the day, that Rick was admitted to Hahnemann on Martin Luther King Day. He was diagnosed with pneumonia. His temp was over 104 by the time we got him there. We needed a wheelchair to get him out of the car. I made Tiffany go home because I didnít want her leaving the hospital in the dark. It was still light and the car was in the ER driveway where I could see her.

Rick was rushed into an ER room and things were happening too fast. I knew Rick was slipping away. The next thing I knew, Tiffany and Jason were in the room with us. They stayed with us until they knew Rick had been stabilized and was going to be okay.

I was reliving last Martin Luther King Day all over again.

Jason knew as soon as he saw me that something was wrong. Of course, insisting that Rick take his temperature again really made it easy. Jason ran to Wawa during halftime. I called his cell to tell him what was happening. Tiffany had called several times during the game, but I didnít want her to know yet. Jason knew because he was here.

Rick began to realize what I was doing. I had to ask him about his meds. I wanted a list to hand them in the ER. I also wanted his pill container filled in case they couldnít get the meds he needed as quickly as I wanted them. Actually, they have always been glad that I have his meds with me. He was still assuring me he was going to be okay.

His temperature finally began to drop. By then I was lying on the couch with my headset on and listening to soothing music. When he told us his temp had dropped, I finally began to cry. They watched the game and I cried quietly on the other end of the couch facing away from them. The tears just rolled down the sides of my face. No one ever noticed me; that was the goal. That continued until Jason decided to leave. The game was almost over and it was not looking good.

I called Tiff from upstairs and told her what was happening. She called back a little later and talked to Rick. He told her he and Jason were hoping I didnít remember it was Martin Luther King weekend. Tiff was worried that I could hear him. He told her I was not within hearing distance. We were all trying to hide it from each other.

Rickís temp was normal by the time we went to bed. He slept through the night. His temp was normal again this morning. I called the hospital and asked for the person on call for our doctor. She was on the line within minutes. The best thing was that we know each other well. Rick is on an antibiotic now. If he begins to run a fever again, she wants me to call immediately. I am keeping the bags packed. I still have to make it through two more days.

I had some funny stories to tell you, but I am afraid this is already too long. They will have to wait. I will keep you posted on how Rick is doing.

Until laterÖÖÖÖ

Love,

Nance

Wednesday January 3, 2007

Dear Friends,

Although I am writing today, I will not send this to Tiffany until after Rickís appointment tomorrow. He is doing well with his physical therapy. He will be headed there today for his appointment this afternoon.

Our only concern is a rash on his stomach and legs. He just told me about it on Monday. We are watching it closely. It seems to be getting better. It occurred to us that it might be from soaking in the Jacuzzi. I didnít say anything, but in the back of my mind, I am always worried about graft vs. host. We will see what the doctor says tomorrow. I donít think it would be getting better if it were serious.

We had a very quiet holiday. We spent it alone. Our goal is to celebrate Christmas this Friday evening. It can only be on a weekend, so if we miss Friday this weekend, we have to wait until next weekend. Ellie is going to see Princesses on Ice on Sunday. We hope to go with her. So, Saturday is not good for me. I could never do both things that close together. If the decorations are up too much longer, I will have to dust them. And, believe me, I donít see any dusting happening! J

We are fortunate to have a theatre in Oaklyn, the town right next to ours. The Ritz theatre has childrensí productions on weekends. The kids have been taking the grandchildren Ė even two-year old Alyssa Ė to see them. They love the theatre. The character who orchestrates the productions is a gentleman dressed up like a wolf. His name is Ritzy. The kids adore him. Last Friday I was talking on the phone to Ellie. She asked me how to call a wolf. I told her I didnít know; I would have to think about it. She replied, "Would you go ask Poppy, because heís really smart." Fortunately, I had heard Tiffany in the background making the noise Ellie wanted to hear. This is how they call Ritzy. I told Poppy before I handed him the phone. Ellie was thrilled, but then her Poppy knows everything.

Iím not sure when my last report about my slippers was. I think it was the day I had lost all three pair. I did finally locate all of them. The next morning I got out of bed and began to trip over three pairs of slippers lined up next to the bed. However, now I have a new problem. My slippers are navy, red, and pink. My new robe matches the pink ones. However, my red plaid pajamas match the red ones and my navy plaid match the navy. Now, I have to match the slippers to pajamas and robe. If I have the red pajamas on with the pink robe, I just donít know which way to go Ė red or pink. Getting up in the morning was so much easier when I only had to look for one pair of navy slippers! Rick claims that this is why he tries to sneak out of bed early in the morning Ė before my problems begin.

Thursday

Rickís appointment went very well. The doctor is pleased with his reports. It was Day 181 Ė that means Rick can stop taking the Prograf. That is one of the anti-rejections drugs. It is the one that placed Rick in the hospital right after we returned from Baltimore. His prograf levels were too high. He is really glad to be off another pill. The only downside is that it does make him a little more susceptible to graft vs. host disease.

The doctor thinks the rash Ė that has disappeared Ė may have been from the Jacuzzi. He just told Rick to shower really well when he gets out.

Rick is still having a great deal of hip pain. He will ask the orthopedic doctor about it at his next appointment.

Friday

Yea! We celebrated Christmas this evening. Everyone was relaxed and had a great time. The kids ran in circles around the house. Tyler, Connor, and Molly played with them. This was the first Christmas in a long, long time that all the adults were able to sit together and talk. I knew the day would come.

We did learn that you cannot take your eyes off Alyssa. Before Bill and Maureen arrived with the kids, we were all in the living room. The three little ones Ė Ellie, Nicky, and Alyssa Ė were chasing each other around in circles. AJ said to Nicky, "Remember watch Alyssa." While he was running past AJ he replied, "I am; sheís outside." AJ went running to the backdoor. Tiffany was just bringing her inside. Iíve always believed the more adults there are to watch the kids, the worse it is. Everyone thinks someone else is watching. But, Nicky did know where she was! J

This Thursday we will be headed back to Hopkins in Baltimore. Tiffany, Fran, and Ellie will be taking us. We will return that night. Rick just wanted to come home to his own bed. Iíll keep you posted.

Until laterÖÖÖÖÖÖ..

Love,

Nance

We have GREAT news!!  I myself (Tiffany) just wanted to say thank you for all of your prayers and also say thank you to God. 

Sorry this update is a little late. I have been sick all week with a cold and haven't been on the computer.  Merry Christmas to all and thank you God for taking care of us.  Thank you for all of the miracles you have blessed my family with.  From taking care of my brother Tyler, to my Pop, your miracles never cease.

Happy Birthday Jesus!

Friday December 28, 2006

Dear Friends,

It isnít even 5:00 AM, but I canít get back to sleep. I wanted to write last night; I was just too exhausted. Rick is doing well. He and Tiffís husband Fran are the only two who have escaped this stomach/intestinal, fever/chills, chest and head cold/bronchitis bugs the rest of us have had.

Yesterday Rick was on his way home from his Physical Therapy. I was upstairs at the computer trying to return a few e-mail notes. The phone rang; Rick said, "Look out the window at the gloaming." I raced to our bedroom window. The sky was burning with deep hues of pink, purple, and mauve. Each glowing color melted into the next. It had to be one of the most beautiful sunsets I ever remember seeing. How lucky are we? We have the most wonderful view from the front of our house. Rick was saying he knew it wouldnít last long and he wanted to see it with me.

I tore downstairs, grabbed the camera, ran out the front door in my bare feet, and stopped in the middle of the street. I think I forgot to check for oncoming cars. I needed a picture. I took two, but most of the magnificence had already faded. Donít worry; the neighbors are used to me doing things like this. Rick pulled into the driveway as I was headed back inside the front door. We looked at the pictures I was able to take.

I love the sunrise and sunset. On many occasions when Rick and I were both working, I would see the most glorious sunrise on my way to work. I would grab the cell and call home, "Look at the sunrise." We would enjoy the sky as it came to life in the most magnificent colors. So many days I wished I could call work and say, "Iíll just be a few minutes late. Iím watching the sunrise."

Several years ago I began to show Ellie the sunset. She and I would walk down the driveway watching with wonder the miracle coming to life. I taught her to sing "In the Gloaming" while we watched. She has never called it the sunset. Still today when we are together and there is a sunset Ė it doesnít have to be magnificent Ė Ellie says, "Look, Meemie, the gloaming. Then we sing.

In the fall there is a tree just past the park in the center of Collingswood. For a very short time, if the sky is clear for the sunrise, the sunlight spills down from the Heavens and the tree comes to life. It always takes my breath away. The leaves are deep red, magenta, and burnt orange. The timing must be perfect, and the weather must cooperate. Then it looks like God turned on the switch and the lights burst on inside the leaves. I have a picture of it. One morning Rick drove over and he took several pictures for me. They are not only beautiful, but just one of the many reasons Rick is so very special and I love him so much!

It has been a most unusual Christmas for our family. We still havenít been able to celebrate together. And, it looks like it still wonít be this week. Santaís presents sit quietly under the tree waiting for three little ones to tear through them. Mr. and Mrs. Claus stand patiently next to the tree. Rudolph and Clarissa are snuggled together in front of the Clauses. Shrek and a huge yellow bunny sit in the little rockers in the foyer. On my way to bed some nights, I notice that one of them has lost his antlers. I find them and gently place them back on his soft head. They are all awaiting the excitement and squeals of joy when their little ones finally arrive. No one will know it isnít Christmas morning. In our house it will be.

We did get to see the video of Nicky and Alyssa as they came down the steps Christmas morning at their home. The look of wonder and such surprise on Nickyís face as he peered through the staircase railings bring such joy to your heart. He whispered, "Santa came?" His exuberance as he surveyed the piles of presents was contagious. For the longest time, he had been asking Santa for a big set of drums like his cousin Ellie has. Santa had granted his wish. However, the Thursday night before Christmas he had seen a mask that makes your voice change. Donít you love commercials? He looked at his daddy and said, "I want that for Christmas." Daddy tried to explain that he had already sent his letter to Santa and had asked for a set of drums. Nicky thought for a moment and replied, "Thatís okay; Iíll just play Ellieís." How do you explain this to a four year old who knows he has been a good boy and Santa can do anything? Jason had to go to work Friday. He wondered where he would ever find this mask the Friday before Christmas. He called everywhere. He found a store in Turnersville that had one left. Would they hold it? He would drive right there. No, they couldnít do that. Jason offered the guy ten dollars if he would please hold it for him. The guy agreed and told him his name so Jason could ask for him. The traffic between 4:00 PM and 6:30 PM stands still on Route 42 between the bridge and the exit to Route 55 Ė on any given weekday. The Friday before Christmas at 4:00 PM and this was the trip Jason had to make. When he arrived at the store he asked for the sales guy. He came out with the voice changer. No, he wouldnít accept the tip from Jason. It was the last present Nicky opened. He just kept squealing, "You see, Daddy, I told you Santa would get me both." The trip that Friday night had been worth every minute!

Thank you so much for the wonderful Christmas cards and notes of encouragement. There were cute ones, touching religious ones, and beautiful ones. Each one different and special in its own way. Once in a while a card will just take my breath away. Sometimes it is the message inside, sometimes it may be a picture that reminds me of something. This year we received one of those cards. I still remember. I was sitting in the family room when I pulled it from the envelope. Before I even opened the card, I jumped up to show Rick. I asked him, "What does this remind you of?" He knew immediately, a Thomas Kinkade painting. I opened the card; it was from our neighbors Dave and Tammy. Iím not sure why, but I turned the card over. Thomas Kinkade, painter of light.

There were many times in Baltimore Ė before this summer Ė that Rick and I would have to fill hours on a day before an early appointment the next day. We would go down to the Inner Harbor. Inside one of the malls was a Thomas Kinkade gallery. We would spend the afternoon in the gallery. We would stop in each little room. Then we would turn the lights up and down and watch his paintings come to life. The sun would rise and the dew would glisten on the grass. Or, the sun would set and the sky would glow with color as the lights in the windows of the houses would begin to glow and the home would come to life. The beauty never ceased to amaze us. We would wander through the gallery and try to decide which original we would buy if we ever had the money. Then on one of our trips a few years ago, the gallery had closed.

I took Dave and Tammyís card and placed it under the small Christmas tree that stands on our serving table in the dining room. It has white lights, an angel on the top, and ornaments Rick has made each year. Each ornament contains a grandchildís picture for that year. I placed the card under the tree. The snow on the tops of the homes and on the trees came to life. The lights on the tree struck the glitter with perfection. We finally have our Thomas Kinkade painting and it truly does come to life. It will be sitting there every Christmas. In fact, I have said that I donít know if I can take the tree down this year. How do you take down a Kinkade painting? We have been too sick to have Dave and Tammy come see it, but I think we have plenty of time. J

I have some funny stories about my slippers, but I think I will save them for next time.

We have the date for Rickís six-month check-up at Hopkins. He is scheduled for an appointment with Dr. Jones his transplant doctor, blood work, chest x-ray, CT scan, and a bone marrow biopsy. It will be a long, busy day. Obviously, neither of us could ever make that drive. Those plans are in the works. We also havenít decided if we will spend the night. Even if Rick isnít driving, he will be exhausted. We will have the blood tests results that day. The results from the biopsy will take one to two weeks. The biopsy will let us know how much of the donor blood cells are being made in the marrow. They were very high on his first biopsy Ė much to the surprise of the doctors. CLL takes much longer to see results. Hopefully, we will be close to 100%. That is our goal!

We wish you all a safe, happy, healthy New Year. Rick and I will be celebrating with Sparkling Cider in beautiful champagne flutes, thanks to our dear friends Doreen and Don. They stopped by Christmas Eve to drop off this huge, beautiful basket. Rick canít have alcohol yet and I have been too sick to even think about it. I would never have thought of the Sparkling Cider. However, I think we may ring in the New Year about 9:00 PM. Happy New Year!

Until laterÖÖÖÖÖ

Love,

Nance

Monday December 25, 2006

Dear Friends,

Rick and I send our love and warm wishes for a wonderful Christmas. We hope all your hopes and dreams came true.

Rick and I will be celebrating Christmas later this week. Rick is doing fine; I have picked up an intestinal virus and a fever. Both of our granddaughters are running fevers, too. That is the beauty of Christmas. It happens no matter what is going on. We will just be having a big Christmas dinner later when everyone is well. Our Christmas decorations could be up for a while! J

Last night Rick and I sat at the kitchen table. It was the first Christmas Eve that we had ever been alone. Tiffany had ordered take out dinners for all of us. Jason picked them up and delivered them to each home. Mine was pasta primavera; it is one of my favorites. However, I knew I would be trying to just eat a bowl of oatmeal. We looked at each other and Rick said, "I am just so thankful to be here this Christmas." We have been so blessed over the last several years of treatment. The last six months have been the most difficult, but we have made it. This Christmas we have so much to be thankful for.

Tiffany called us last night and asked if we had gone upstairs to bed yet. I told her we were sitting in the living room looking at the tree and all the decorations and lights. No, the TV wasnít on; we just love to sit and talk. I told her we would be going upstairs shortly. We were going get into bed and watch "The Bishopís Wife." I told her we would hold hands through the sheets. I am trying desperately not to spread any germs. Anyhow, Tiffany made some remark about gagging. It would not be until the next morning that we understood all her calls and questions. Would you believe Santa left gifts for us under the tree? I hadnít even left him a cookie! L

This morning we slept in. Normally, we would set the alarm for 6:00AM to get ready to run to see the grandchildren open their presents. When we finally got up, I watched Rick put on a red shirt. He said he was still going to look like Christmas. I thought I had better do the same. I just donít have much red. I never brought down all my Christmas outfits from the attic this year. Then, I saw them. Do you remember when Rick bought me the pink slippers so I wouldnít keep losing them? Well, I donít remember if I told you he bought me two pair. This second pair was perfect Ė bright Christmas red! I quickly slipped them on and showed them to Rick. That would be my Christmas red.

I must tell you that I can even lose big, red, furry slippers. The day wasnít even half over and I couldnít find them. Rick put the Eagles game on at 5:00. I still keep wondering what would have happened if I hadnít been sick. Iím guessing Christmas dinner would have been worked around the game. Anyhow, I decided to join him. Iíve learned that football isnít fun to watch alone. So, when I canít get Jason or Tiff here during the game, I have to fill in. Well, I picked up my faux fur blanket off the end of the couch and guess whatÖ I found my red slippers! I donít think it matters what color or how big and furry; I will always lose my slippers every day. I keep trying to explain to him that I only wear them downstairs in case I have to go down to the basement or outside. That is why they are never actually on my feet!

Jason stopped at the house to give us his camera so we could watch Nicky and Alyssa this morning. I still find instant video amazing. We watched the entire morning. Tomorrow we will watch Ellie. Poor Ellie just couldnít understand why Meem and Pop werenít there. Weíve never missed a Christmas. She did understand that Meem was sick. We are so lucky that we wonít miss a moment of this morning. I love the innocence of children. The looks of surprise, the squeals of glee when they see that Santa magically stopped at their home and left them presents. I love Christmas. I love the magic, the carols, the decorations, the excitement that fills the children, and the sacredness of this holy day.

Rick and I are thankful for so much this past year. We have been blessed with a wonderful, loving family. We have also been blessed with loving friends who have kept us up when it was so easy to get down. We truly thank all of you and wish you a very Merry Christmas. We also send love and blessings to our friends and family members who celebrate a different holiday this season. May God bless us all.

Until laterÖÖÖÖÖ

Love,

Nance

Wednesday December 20, 2006

Dear Friends,

Rick did very well at his appointment on Monday. He actually went completely alone. Tiff and Fran were taking Ellie to Storybook land that evening. Tiff tried to get him to change his appointment, but we insisted he was okay. I just didnít feel well enough to go with him. We are just waiting to hear from the hospital today about his counts for the prograf that he takes.

As soon as they were all gone; I pulled out the last strand of lights I needed to have. The foyer was just crying out for some red. The little village in the middle is placed on angel hair. There are white lights under the "snow." There are green lights lining the top of the piano and then they weave in and out of the angels and different Santas on top of the piano surrounding the village. This was such a simple task. I just needed to run one strand of red lights up the wall next to the piano, across the top, and down the other side. The perfect frame!

I never realized how short I am, or how high the ceilings are. The dining room chair wasnít enough. I started placing books on the chair. I felt like the Cat in the Hat doing a balancing act. I decided if I fell, I would really be in trouble. I sat down on the floor and contemplated my options. It was cutting it very close, but if Jason was on his way home before Rick, he could hang them. Jason returned my call about 3:00PM. Rick had already called once. He had to hang up when the doctor came in. Hmmm, maybe just enough time. Jason said he would stop on his way home. It only took him a few minutes. That is rather unfair because he is very tall! If they would let me get the ladder, I would have been just fine. He did ask me why I was trying to do this. I pointed out that I hadnít done anything; he had! J He was gone before Rick got home. However, they did pass each other so Rick knew he had been here.

I thought; letís just get this over with now. I hate waiting to get in trouble. Getting him into the foyer was simple. He wanted to check for mail. I never seem to remember that. Well, he opened the door, picked up the mail, and put the light on so he could read what was there. Heís trying to kill me. I finally said, "Donít you notice anything new?" He looked around the foyer and living room and then finally complained, "I hate these games. Can you just tell me what I am supposed to see?" "The LIGHTS! Isnít it pretty how the red frames the green and white?" He thought it was very nice. This just wasnít working. Finally, I asked, "Donít you want to know how I got them up?" He hadnít really thought about that, but then he remembered passing Jason.

I have promised to stop decorating. I am physically unable to do much on my own. Rick is too tired also. I refuse to ask the kids when they are having difficulty finding time to decorate their own homes. If I had my way, I wouldnít stop until I felt like I was living in the North Pole with the Clauses. That reminds me; years ago I made a long red skirt for Christmas. Itís in the attic. It may just fit again. By the time Tiff reads this, I will already have been up there. J

For those of you who read the last update, you may remember the disappearing blue slippers. This morning was the first day I decided to wear my pink ones. I always take off my shoes (that is if I have any on) before I sit down to eat. When I went to pick up my slippers after breakfast (notice I am not planning on wearing them) I found my navy ones under them. I found that quite amusing. I thought about all the time I would have been looking for them upstairs. Even though I have another pair, I would want to know where I left the others.

I finally realized Rickís inability to understand the kids and me. He puts his shoes on when he gets out of bed. He takes them off when he gets ready for bed. He actually wears shoes all day! The kids and I see them as an evil necessity that one must wear for unpleasant things. Jason and I both have been found in sandals in the middle of the winter. I always dreaded the first day of school when I would have to put on a pair of shoes. Since we have not been able to dance for the last couple of years, I stop wearing shoes at the end of school. The next time I put on shoes will most likely be for school.

When the kids were younger, Rick was always telling them to put their shoes upstairs in their rooms. One winter night he found Tiffany standing in the driveway in her bare feet. We had two dogs that had to be taken out and the yard was not fenced. So, we had to always go outside with them. He asked her what she was doing in bare feet. She told him it was his fault. If he didnít make them put their shoes upstairs, she would have had a pair to put on. That made complete sense to me. I donít know why he always had so much trouble with that fact. I still hide at least one pair of flip-flops downstairs Ė just for a real emergency.

I will let you know when Rickís next appointment will be. They are waiting to see when he will go to Hopkins for his bone marrow biopsy. It should be the first week in January.

I must go bake Santaís cookies. I believe Ellie is coming to help. She and Nicky made them earlier; but weíve eaten them all. I canít believe that we are baking frozen cookies Ė take them off the cardboard and just place them on the cookie sheet. Or, I have cookie dough in a plastic tub. One just spoons it out and onto the cookie tray. I do hope Santa doesnít notice. I also am upset that the kids think that is how one makes homemade cookies. Hopefully, next year I will be up to our real homemade cookies!

Thank you so much for all the beautiful, thoughtful cards we have received. Please forgive us for not sending any this year. My hands are just too shaky to write. Once in a while, I have to stop typing because of the tremors. They should stop when I am stronger.

Until laterÖÖÖÖ.

Love,

Nance

Friday December 15, 2006 

Dear Friends,

Itís beginning to look a lot like Christmas everywhere I go. Of course, I have only been outside the house twice for doctor appointments in the last several weeks. Therefore, one would deduce that we have decorated the house. First, I was just happy that Jason put up our tree. I had decided I wouldnít even try to decorate it; the lights on it would have to do.

Then, I decided an undecorated tree would never do. I put out all the decorations that the grandchildren could hang Ė definition: unbreakable. I figured we would just have the bottom half of the tree decorated. I thought Alyssa was too young this year, so we just had Nicky and Ellie. What do four year olds understand at that tender young age? Guess what. They donít even understand decorating the tree. Needless to say, the tree had four sorry looking decorations on it. Tiffany asked me what had I been thinking. I had little stations set up. The Grinch section, princess things for Ellie, planes for Nicky. I am just an organizer.

Now, one might think that the easiest, most intelligent thing would have been to take down the four decorations. I rarely take the easy way out. The next thing I knew all the good decorations were out. So many of them are very sentimental. Each time I carefully hang one on the tree I am reminded of a dear friend or a memory of Christmas past. The only ones we didnít hang were the ones that must be plugged into lights Ė all our Hallmark Lighthouses. Rick was just too tired to do them this year.

Rick has been feeling well. He has had to have his hair cut twice. It is growing in thick and very, very dark! For those of you entered in the pool for when he will have to go back to the doctor before his next scheduled appointment (remember it was two weeks), Iím sorry but his appointment is this Monday and we havenít even had to call the office! J That is great news.

Rick is now doing his Physical Therapy at a facility close to us. He is doing very well. Iím not sure how long he will be in therapy. His range of motion is very good; however, his strength in his right arm is noticeably weaker.

I am still concerned about the food he eats. There have been so many e-coli disasters. Tiffany was going to bring home dinner yesterday. I told him absolutely nothing with lettuce. A few minutes later he announces, "I think Iíll have a BLT." I replied, "Honey, remember no lettuce? Usually one of the key ingredients in a Bacon, Lettuce, and Tomato sandwich is the LETTUCE!" Back to the menu.

I, on the other hand, seem to be a mess. Iíve been told I am not to do anything. Well, I am supposed to eat, eat, eat. I am supposed to stay off my feet. I try; I really do.

I am not sure why my balance is so bad. No, it is not from drinking. It begins when I get out of bed and I have difficulty getting out of the room. The other day Ellie was with us. She was standing at the bottom of our steps. I was headed upstairs to get something. I would make it up two steps and then have to back down the two steps. I did this three times. Finally, Ellie asked, "What are you doing Meem?" I explained that I was trying to get up the steps, but I was just a little too dizzy. She asked, "Do you want me to hold your hand?" I answered, "That would be a big help." We made it up the steps together. I got whatever it was I had wanted and she helped me down the steps. At the top step she announced, "Meem, you are silly, but smart." I assumed I was silly because of how I had looked trying to walk up the steps. I guess I was smart because I took advantage of her help. You can see why they hesitate to leave any of the grandchildren with me.

Last week when David left the house, his last words to Rick were, "Make sure she doesnít do anything!" The following week I told David the humor in his request. I could decorate the entire house around Rick while he is working at his computer and he wouldnít notice. Tiffany does better from down the street. Once she called and asked immediately, "Why are you out of breath?" "I just came upstairs." "What are you doing upstairs?" "Ahhh, Iím not making the bed." Iíve never been good at lying and technically I was on the phone and not making the bed.

The Christmas decorations are in the attic Ė forbidden territory for me. They make it much more difficult by making me sneak upstairs to find what I want. I put things up a little at a time so no one will notice.

Yesterday, I was so happy. Tiff, Fran, Rick, and Ellie were all going to the store. During off hours Ė and no malls Ė Rick is allowed to go. I had everything planned. The lights had been checked and the garland had been brought down from the attic. As soon as I saw the car in the street, I rushed into action. Five minutes later I was in pain. I quickly hid all the things away. There would be not decorating. I had to lie down on the couch and was still there when Rick returned.

Rick and I have a daily ritual every morning. We search the bathroom and all four bedrooms upstairs for my slippers. They are just little navy blue slip-ons. Our carpeting is all dark colors. Next, I go downstairs and check everywhere. To me it is just a game. Where could I have left them? How long will it take to find them? Will I find them? Sometimes, I donít. Anyhow, since I rarely find them when I get out of bed, I might as well make a game of it. Actually, they have been there several times; they are just under something. One day, Rick asked, "Why donít you just wear mine? I donít care." I explained that his were dark blue Ė hence the same trouble seeing them. And, I would most certainly lose his by the next day. Besides, I find this a fun way to begin my day.

Yesterday, Rick came home from shopping with the kids. He had a present for me Ė pink, furry slippers. It would be quite hard to miss these anywhere. I guess I will be looking for another morning ritual. Maybe I will try to find a more constructive one where I actually get something accomplished.

We have three grandchildren waiting for Santa. Apparently, Santa never received the e-mail I sent him. He never left their toys here. I was expecting an early delivery because I thought we would have to do the wrapping. I guess that is why God created children before grandchildren. Their poor parents are going to be very busy this last week before Christmas.

Come to think of it maybe I know what happened. Iíve noticed that my sister has several packages delivered every day. They are her Christmas gifts for everyone. I must talk to her; maybe I had Santaís e-mail address wrong! J

I think I will end on this note. I have just awakened from a two-hour nap. I had not felt well and was very tired, so I went to lie down. Rickís mom had already been to visit and left by the time I awoke. I asked him if she liked my new pink slippers. He said, "No, how would she have seen them?" I said, "I left them under the kitchen table; didnít I?" He said, "No, I think they are up in the study." That is what we call the bedroom with the computer. That is record time. Iíve had them less than twenty-four hours and Iíve misplaced them. And, yes they were there. Looks like I may not need to find a new game to play in the morning! J

Now that I think about it, it may not be the navy slippers at all. Every time I need my sneakers, we go through the entire house looking for them. They are fairly big and white. Iím not a shoe person. I look for my slippers in the morning just in case I need to go down to the basement; I also use them in the attic. I kick off my sneakers the first chance I get. I just donít like shoes on my feet; they are very confining. I am almost always barefoot and happy about it! Notice it is not barefoot and pregnant! J

I will let you know how Rick makes out with his visit on Monday. We are waiting for our appointment date at Hopkins. It should be the beginning of January. Can you believe January 7th will be his six-month bone marrow transplant anniversary?

Until laterÖÖÖÖ.

Love,

Nance

Wednesday December 6, 2006

Dear Friends,

It feels like it has been forever since I have written. Maybe it has been. Rick has been doing well. Tiffany has been going to the doctor with him. I am just too weak. His counts are holding. The doctor was glad that he had been placed on an antibiotic when he was there for an unscheduled visit. They saw something that could have indicated an infection again.

Tiffany now accompanies me to most of my doctor appointments. Once again, Rick is just too tired and weak.

I began getting sick in January. I find it difficult to believe that two specialists have not been able to diagnose my problem. They just keep giving me different prescriptions that make me worse. I decided to investigate on my own. I am on enough anti-depressants that I should be running around the house in party clothes celebrating the day of the week. I doubt that it matters what day that might be! J Iím just very, very happy! I must admit it is difficult celebrating when your body is in unbearable pain. I checked the painkillers the nurse practitioner phoned in for me. Silly me. I forgot to look at what the doctor had prescribed before. What a surprise! The same thing was happening. I was falling into walls, nodding off in the middle of a not too coherent conversation. That part was probably better. I couldnít get up and down steps very easily. Last week I woke Rick in the middle of the night. I told him my grandmother had called my mother and asked me to get something at the store. I couldnít remember what it was. He asked me if I knew my mother had died. My grandmother had died in the early 1970ís. He thought I said I did, but it was difficult to understand. The next night I woke him and asked him if he let the dog out. He just calmly replied, "Yes, go back to sleep." We donít have a dog. I do keep wondering what kind of dog I had. Now I know why one of the teachers told me I was scaring the students. Iím scaring myself!

Here is the problem: If I take one pill in the morning and one at night, they do nothing. If I take more, the pain subsides somewhat because I am in a prescribed drugged stupor. The upside is that in the second condition I tend to sleep frequently and allow my body to begin to heal. This, of course, upsets me because I donít believe in taking drugs!

Tiffany told me about a letter I wrote to her a few nights ago. At first she thought it was spam and was going to delete it. Then, she realized I was at the keyboard and not in bed. I had to go back today and see the note:

Hi Sweetie,

Going to bed to watch some TV,  Call if you need anythihg

We kic=ve you,  Kiss Tye Ouwdy fr us,''Kivem'Neen'XIXIXXIXIIX

Does that not scream Ė WORRY? Of course, maybe I am a Russian spy and no one has explained that to me yet! Is that Russian; Iím not sure?

The painkiller is about to kick in. I am afraid that I must abandon my computer.

By the way, my family doctor has called a specialist. He has me on a routine for five days. If I am not feeling much better by then, he will see me immediately.

How could I forget this one? Dr. Crilley gave Rick two weeks off. Yes, I already know there is a pool going on out there choosing which date he will be in the office! J The only thing funnier would be watching what goes on in this house. No, it doesnít seem to matter if we know you are here.

One more thingÖÖ I donít think we will be able to send cards this Christmas. My hands (and Rickís) are way to shaky to write. Please know that we wish you all a Merry Christmas and a Happy New Year! I think Tiff is in the same position. She is too busy living our crazy lives. So, Merry Christmas and Happy New Year from Fran, Tiffany, and Ellie.

Until laterÖÖÖÖ..

Love,

Nance

Monday November 27, 2006

Dear Friends,

This has been quite the busy day. I had an appointment with my doctor at 9:15 AM. Rick had an appointment with his oncologist at 1:15 PM. Then, there were several phone calls to my specialist in between the appointments. We also had to call South Jersey Radiology about my test on Wednesday morning. I think that sums up most of our day! Making calls, waiting for return calls, trips to the doctors, and trips to the drug store.

Tiffany took Rick to his appointment. I was in too much pain. Apparently, his blood test last week indicated an infection. It was a good thing they placed him on the antibiotic. His counts today were good. The doctor told him to stop trying to get off the painkiller. He is on a very low dose. He has too many other things going on right now. She also told him to sleep when he is tired. His body needs the rest.

I have good news. I weigh 100 pounds. My doctor was ecstatic. I think it was the pumpkin cheesecake and wine. Weíll see how I do in another two weeks. The cheesecake is gone. L

I called the specialist. I explained the severity of the pain I have been in since April. The nurse practitioner phoned in two more prescriptions. I think I am on enough medication to kill a horse. Weíll see how this works. This will not be the first attempt at stopping the pain.

The exterminator came today. It was just in time. I found a hoppy bug in the kitchen. I screamed until Rick came to kill it. I have a routine I follow whenever I need to go to the basement. I quietly walk down the first set of steps. I donít step on the landing. I peer around the wall and check for the enemy. If I donít see him there, I start down the final flight of steps. I slowly scan the entire floor. If I see one, I stay perfectly still. We just stare at each other. I assume he is staring, I donít know which end I am looking at. Itís much like the showdown and the OK corral. Iím backing down each time (actually, I am backing UP the steps J ). Whatever I needed in the basement will need to wait.

The worst problem is when I have checked the situation and it is clear. I will walk across the basement (of course the washer and dryer are all the way on the other side!) to do a load of laundry. I will turn around to go back upstairs and there he is Ė right between me and the steps. At this point I just keep screaming until Rick comes downstairs because I am frozen with fear.

Tomorrow Rick has an appointment with the orthopedic specialist. He has been too weak, tired, and sick to keep up with his physical therapy. Hopefully, he has not lost any of the range of motion he had gained.

It is 6:30 PM. I am headed for a shower and bed. Either the painkiller is helping or just knocking me out. I donít care as long as the pain subsides.

Until laterÖÖÖ..

Love,

Nance

Saturday November 25, 2006

Dear Friends,

We hope everyone enjoyed a wonderful holiday. We took some time to look through our guest book. Rick has never seen most of it. We cannot tell you how shocked we were to see how many people wrote and how many people wrote many times. I do remember thinking those notes were my connection to the world and the life we used to know. We are just so thankful for all of you. This Thanksgiving we were especially thankful for many things, but especially for our friends.

Now I will tell you about this last week.

This has been the worst week I can remember. Of course, I donít remember any of Baltimore or our frequent stays in the hospital. J Things are better that way! In other words, this could not have been the worst week we have had!

I guess I should start at the beginning. Rick had the week off from his oncologist appointment. Last Thursday Dr. Crilley said he looked great, the counts were good, he was finished the antibiotic, and the sore throat and runny nose were gone.

Sunday evening Rick began to feel lousy. By Monday he was nauseas. He was very tired. Tuesday I convinced him to let me call the doctor. They wanted to see him; he could come in any time after 1:00PM. He didnít need an appointment.

Normally, this would not be a problem. However, I also had an appointment with the Gastro-Intestinal specialist at 3:30PM. First, I called Tiff to see if she could take Rick. Next, I called Jason at school to see if he would be home in time to take me. Everything was good to go!

Tiff was able to take Rick and go back with him to see the doctor. Fran was home with Ellie. The doctor thought it was most likely withdrawal

from painkillers. He had the nurse do blood tests before Rick left. He was exhausted by the time he arrived home.

Tiffany was able to get back here in time to take me to my doctorís appointment. Rick came in the door and I ran out of the door. Once again, Tiffany was able to go back with me to see the doctor. He actually knows her better than he knows me. All I remember hearing was that the CT scan showed thickening of muscles that would be consistent with the unbearable pain I have. He wants another test. I go Wednesday. I will have to drink that dreadful stuff again. The only thing I cared about was the last test that confirmed my pain.

When we arrived home Rick was sleeping in his recliner. He still wasnít feeling very well. By Tuesday night he was running a slight fever. Here we go again. We called the doctor first thing Wednesday morning. His blood tests were good; the fever wasnít. He is now taking a different antibiotic. Things are never boring here. He is feeling better.

Last night was the tree lighting in Collingswood. Santa also climbs down from the roof of the Borough Hall on the fire truck ladder. Rick and I were too sick, weak, and tired to go. The kids decided to also stay home. Today is the Christmas parade. This is a really big deal. Every year, I would go down very early and set up our chairs. The parade begins at 10:00AM. I would be there around 8:00AM. We have our favorite spot. Next, I would go across the street and buy my favorite flavored coffee. Then, I would just wait for the rest of the family to arrive.

This year I couldnít do it. Tiffany, Fran, and Ellie went early to save our spot. Jason, AJ, Nicky, and Alyssa arrived next. I finally had to admit that I just couldnít go. I was in too much pain. I am not a happy camper! Rick was able to join them.

Donnalee (my younger sister) called me the other day. She was out shopping and asked me if I needed anything. I asked her for a new set of intestines. Her comment, "You would just ruin them!" The sad thing is that I am afraid that she is right!

Barbara (Konrad), thanks for the note in the guest book. You make laugh lines sound good! Thatís how I will think of them from now on.

We have had a slight problem with or heat. Last year Ė or possibly a few years ago Ė Rick installed a new thermostat. This one regulates the heat using a timer. Well, our hours are different now and the time changed. I canít remember if we are on or off daylight savings time Ė not that it matters. Anyhow, Rick had forgotten how to set the new thermostat. I have never touched it. I would rather just get a sweater. Rick has been freezing when he gets up in the morning. He finally figured out how to change the temperature. Then, he wanted to show me Ė I really donít care to learn. I still donít think he has figured out how to reset the timer. This morning I got up at 5:00AM. I was hoping that maybe if I got up that early, I might be able to go to the parade. As you know, that didnít work. However, I managed to turn on the heat! Rick was really impressed.

I still havenít mastered the televisions if someone has turned on a DVD player or VCR. I donít attempt taping or playing tapes or a DVD. I keep trying to tell him I am technologically challenged. Truthfully, I just donít care. He did point out that I was able to figure out how to replay the same Kris Kristofferson song over and over. See, I cared about that one! J

Jason and Nicky came over yesterday and today. They put up our Christmas decorations on the porch. He brought the tree down from the attic and put that together. Today they came back and put the lights on the tree. Itís beginning to look like Christmas even if I donít feel like it.

I wanted so badly to decorate for Christmas. Unfortunately, I am in so much pain I can barely stand up. The doctors and David warned me to stay off my feet and rest. Any time I try to do something, I hear, "Iím telling David." Jason wanted Davidís phone number so he could put it in his cell phone. I have to sneak up to the attic when no one is listening. I am trying so hard to be good. They have taken away all my fun! L

Tomorrow I will see my family doctor. Then I will call the specialist and tell him that the pain is making me suicidal! Of course, that would need to be planned for after the holidays. How much fun would that be for the family!?

Iíll let you know how I make out tomorrow. Rick sees the orthopedic doctor on Tuesday. He also sees his oncologist tomorrow afternoon. Arenít we too young to be spending most of our days at doctor offices?

Until laterÖÖÖ..

Love,

Nance

Sunday November 19, 2006

Dear Friends,

I really donít remember my last update. I havenít been healthy long enough to sit at the computer and write. I could check my last one, but then I would have to read what I had written. I never look back. So, if I repeat myself Iím sorry.

Rick saw the oncologist on Thursday. His counts are holding and she is very happy with his progress. She even gave him next week off. Yeah, no trips to Hahnemann next week. I did notice she told him who was on call if there was a problem. We are all painfully aware of Rickís penchant for hospital admissions on holidays and weekends. We ran into several of the nurses from the 15th floor on Thursday. Their shift must have just ended. We received hugs from everyone. They all wanted to know how Rick was doing. They missed us. When the nurses from the oncology floor and the woman in admissions all know you on a first name basis, you begin to realize how much time you spend in the hospital!

I still have no concrete answers for my problems. I do know that the CT scan indicted some abnormalities. I just donít know what that meant. I will see the specialist on Tuesday. Sometimes I think I should just apply mind over matter. Pretend you are not in pain and it will go away. So far, I am really lousy at it!

Rick and I have had lots of time to talk. We are together twenty-four hours a day, seven days a week. We have many of the same fears. It had never occurred to me that he was worried about losing me. Iím not sure we know how to exist independently of each other. We are both scared. I guess the good thing is that we are finally able to talk about it.

Karen (Lacy) sent us a Quartz Point with energies of Sedonaís four major vortex areas. It was to help Rick get better. Well, he seems to be on his way. I decided it was my turn. I am rubbing the quartz all over my stomach. Iíll let you know if this helps. Hey, I just remembered the oil we had blessed in Baltimore. Whatís good for the goose (is that the male) is good for the gander (female?).

Okay, enough about health issues. We are more into the fun times. Yes, it is difficult to believe that in spite of everything, we spend most of our days laughing. I guess it could be that we are both crazy, heavily medicated, into the wine (donít worry; not Rick), or just having fun being together so much.

Big news!! Rick had his hair cut on Friday. Iím not wrong about the color. Frank (at Vincent and Josephís) remarked about how dark it is.

We have hoppy bugs back in our basement. I think they are called camel crickets, but who cares. They are big, ugly, and jump quickly. We have been getting them every fall. They come in when the weather turns cool. Rick always calls the exterminator as soon as he sees one. Well, this year has been slightly difficult. Rick always cleaned the basement before he came. He needed to get everything up off the floor. That is just not going to happen. I try to remember to look all around the basement before I set foot off the steps. However, It is very difficult to find something in the freezer. I canít concentrate on food when I am constantly looking down for hoppy bugs. My first sighting was when I was placing a load of laundry in the washer. I turned around and there he was Ė between me and the steps. All I could do was scream. Jason was here at the time. He came running down and eliminated the creature. Last Thursday I saw my second one. Ellie wanted to follow me to the basement to get Doreenís homemade manicotti (this was the most delicious manicotti we had ever tasted) out of the freezer. Since she didnít have shoes on, I had Ellie sit on about the third step from the bottom. Without thinking I just stepped off that step onto the side of the stairs. I was just closing the freezer door when Tiffany came down to see what we were doing. She steps onto the basement floor and announces, "I guess you didnít see this hoppy bug." There we were in a triangle with the hoppy bug in the middle of us. Once again I just kept screaming. Then Ellie kept screaming. Tiffany eliminated him with a mop. This must have taken a lot for Tiffany. I think the only thing she kills is mosquitoes. I think the exterminator is just going to have to work around the mess. I canít live in fear like this any longer! I canít step on anything that big!!!!!!

Today we had a rare outing. We went to the Christmas Bazaar at Holy Savior in Westmont. Ellie had her picture taken with Santa. I wanted to buy some candles. Iíve always had lots of candles. I love the fragrance floating through our home. There is something comforting about my favorite aromas. Rick and I stood at the candle table while I kept smelling different scents. I found one I liked. It was the last one. I started looking for another one I liked. I found it Ė Apple Butter. I was addicted. I couldnít take it away from my nose. All of a sudden I said to Rick, "Take this; I am getting light-headed." I was really afraid I was about to pass out. Again, it was the last one with that scent. Itís already burning in the kitchen.

This is for Charlie, Joanne, John, and ReneÖIt was the same feeling I have at Word of Mouth with the warm chocolate chip bread pudding in the creme anglais sauce. Itís euphoric. I donít know; can I stand feeling like that all the time???? I intend to find out! J

I am still enjoying the memories of my Kris Kristofferson concert. And, for all you men who are laughing, there are more females asking me if he still looks as sexy as he did in the Ď70"s. Heís better! Do men and women ever really know what the opposite sex finds sexy? I donít think so!

Thank you so much for the notes in the guest book. Iím not sure you realize how much they mean to us. We have really only thought of the last six months and the transplant. We have forgotten that Rick has been in treatment almost non-stop for four years as of this coming January. We are still waiting for the day that hopefully our lives will return to normal. Iím just not sure either of us will recognize that day! The most important thing is to maintain a sense of humor. The downside Ė laugh lines!!!!!

Until laterÖÖÖÖ.

Love,

Nance

Sunday November 12, 2006

Dear Friends,

I am slowing down. I had hoped to write an update on Thursday after Rickís appointment. Unfortunately, I havenít had the strength to sit at the computer and write. Weíll see how much I can do today.

First, the Doctor McDreamy contestÖ.. They had the video camera in the office and were planning the segment to tape. One of the doctors was delayed in a surgical procedure. Dr. Toloposky couldnít wait any longer. He was headed to the airport to catch a plane to Florida. That was the deadline date. Bottom line Ė no entry in the contest. L If Rick and I had been feeling better, we would have gotten the contest rules to the doctor earlier. At least everyone in the office had some fun with it.

Rickís appointment went very well. His counts are holding. He did tell the doctor that he had just felt lousy the entire week. He had a runny nose and a slightly sore throat. The doctor checked him over carefully and everything looked good.

We came up with a new game plan to get off the Oxcydone. We were also guessing that some of the reason he felt so lousy was due to withdrawal. This new plan is working better.

His range of motion in his right arm is about the same. He has been too sick to work on his exercises. The good thing is that he doesnít seem to have lost any progress he had made.

Friday morning Rick woke up with laryngitis. He really did not feel very well, but he still did not have a fever. We decided it was best to just give the doctor a call. Our call was returned within about fifteen minutes. They wanted to see him right away. The doctor placed him on an antibiotic immediately. He is feeling better today.

This is why I worry so much. On Thursday morning he saw the doctor and was okay. Twenty-four hours later he is running back to the doctor. It was a Friday. If he had not gone, and then gotten worse, we would have had to go to the ER. So much for our first week with only one appointment. We almost made it! J

Yesterday was our grandson Nickyís fourth birthday party. They were holding it in the all purpose room in AJís church in Haddon Heights. Rick had a sinus headache and I was still curled up in pain. We decided that Tiffany should go without us. We would go later when they were finished with dinner. Neither of us was in any shape to be going out at all! Jason was going to call us when dinner was done. We would leave then. The call came. Rick and I walked out to the car. First, there was a discussion about which one of us was in better shape to drive. He won; how pathetic is that? We backed out of the driveway. We had driven to the corner (the length of two houses) and the stop sign. Our rule has always been that the passenger tells the driver if it is okay to go. I had seen the car, but it was a distance from us. I said, "Itís okay." Well, I wasnít expecting him to take so long to step on the gas. By the time he had, the oncoming car was fairly close. I yelled, "You have to keep moving!!!!" That was our second mishap/discussion. Third, we were at the light on Haddon Avenue at Cuthbert Boulevard. This is only a few blocks from our house. The light is red. I know he can make a right on red here, but think it is best if we just wait. I also see a police car first in line to make a left hand turn coming in the opposite direction toward us. This particular light stays red while the left hand green arrow allows those drivers to make their turns first. Just as the ARROW turned green, Rick announced, "I can make a right on red here." At the same time he stepped on the gas. He hadnít noticed the green arrow. I screamed, "Stop; cop!" He just wasnít thinking and I was thinking silently. His foot hit the brake. I told him that neither of us should be driving! Fourth, we had just passed Paul VI High School and were headed around the curve at Brunoís Restaurant when two little dachshunds ran into the street. Two young guys were chasing them. Traffic stopped behind us. A woman passed us on the right and parked her car perpendicular to the curb just past the intersection we were in. She jumped out of the car and began chasing the dogs. Rick turned the corner, stopped the car, and we both jumped out. Each of us was telling the other one to get back in the car. I saw the dogs were headed to the next street. I told Rick I couldnít go that far and we should just get back in the car. We were already probably holding up the birthday cake. Rick drove around the block and there were the two dogs still running down the pavement. Once again, he parked the car and we both started running (if anyone would call what we were doing running!) toward the dogs. Finally, the one kid caught the dog in the lead. Within moments, the other boy had the second one. Finally, we were able to continue our exciting drive to Haddon Heights. And, this is why neither of us should be driving!!!!!!!

We arrived at the party just in time. Nicky was so excited. We were both glad we were able to get there. I decided to walk my father and his wife Mil outside. I followed them up the steps to the entrance to the church. Iím not sure what happened next; it all took place so quickly. I thought my father (84) had missed the step just outside the door and was falling. I grabbed him around the waist and tried to hold onto him. Then, I realized that Mil was the one who had fallen and he was trying to catch her. Somehow, I jumped around my father and then jumped in front of Mil. I was trying to keep her from falling down the steps. All I remember after that was hearing Jason behind me saying, "Mom, you canít hold her." Then Jason was in front of me holding her and me. No one broke anything. Today, my father told me that Mil aches all over, but is able to move her fingers. The worst was her sprained wrist. What a way to end a party! Tiffany followed us home. Had she known about the exciting ride to the church, I donít think she would have let either of us drive the car! She wonít know until she reads this update! J

I finally had the CT scan completed Friday morning. I do not think they saw anything. Usually, they ask you to stay if something is not right. My next appointment with the specialist is the Tuesday before Thanksgiving. Although the pain has been unbearable, I didnít think I could ask for help until I had the CT scan. Since Friday the pain has been unbearable from the moment my eyes open until I am able to finally fall asleep. Mostly, I am angry because I am fairly sure it is directly related to the wretched stuff I had to drink! Once again, I feel like I have taken one step forward and now fallen three steps behind!

Well, I began this update this morning; it is now time to go to bed. I think I shall end. Rickís next scheduled appointment is Thursday. Iíll let you know how things are going. Hopefully, the week will be boring!

Until laterÖÖÖ.

Love,

Nance

Wednesday November 8, 2006

Dear Friends,

This is Rickís first week with only one oncologist appointment. Normally, we would have seen his doctor on Monday. His appointment this week is tomorrow. It has been a very difficult three days. Rick has not felt very well. He has chills, a slightly sore throat, tremors in his hands and legs, and night sweats. He is not sleeping very well at night. We are checking his temperature constantly. The question is Ė When do we call the doctor?

We are guessing that the tremors and difficulty sleeping are a result of the withdrawal from Oxcydone. On Monday, he started taking only one pill at night. His runny nose and sore throat may be the beginning of a cold. I find myself sitting on the couch watching him while he naps in his recliner. He has a cap on his head, sweatshirt with the hood up, and is under a blanket. Iím wearing short sleeves and have bare feet. It is not cold inside the house.

I feel worried until five oíclock. That is when our doctorís office closes. Then, I am scared until nine oíclock the next morning. I need to make a mental list of the things I need to pack quickly if we need to call the hospital. I used to have them ready. Iím still not completely unpacked from our summer in Baltimore. I think we both liked it better with two appointments each week!

My appointment with my doctor went well on Monday. I had gained back the pound I had lost. Now, I am back where I was a month ago. I guess that is progress. J The next thing shocked me and my entire family. She suggested a flu shot. I reminded her of my phobia. Ah, yesÖÖshe remembers! She is concerned that I will not be able to fight the flu because of my weakened condition. She also reminded me that I cannot risk exposing Rick to the flu. I finally caved. It hurt, but there was no reaction. This is not a normal reaction for me.

I am trying to find a local support group for caregivers. It seems to be the only thing left that I havenít done. I know that I am not coping with things. I am getting help from my primary care doctor, a gastro-intentional specialist, and a psychologist. Until I learn how to deal with this stress I will continue to be in pain.

I am afraid I must close. It is 6:30PM. I have no idea why my pain is worse than it has been for a while. I guess it is good that I finally rescheduled my CT scan for this Friday. Then I will see the specialist the Tuesday before Thanksgiving. Right now I only have one thing on my mind; we have 14 Ĺ hours to get through. The doctor will be back in at 9:00AM tomorrow. I do not like these long nights!

Until laterÖÖ..

Love,

Nance

Friday November 3, 2006 

Dear Friends,

Rickís doctor is very impressed with his progress. His counts are holding. He isnít experiencing any signs of complications. He did ask Dr. Crilley how long it would be until we knew that the transplant had worked. I was surprised; he doesnít usually ask questions like that. She explained that they really donít have any significant numbers to use. This is still in a trial phase. The usual time frame is five years of staying in remission.

Dr. Crilley doesnít know what Dr. Topolsky decided about the Dr. McDreamy contest. The last she heard was that he was considering it. I guess we will have to wait until next week to find out what he did.

Last night we had tickets to see Kris Kristofferson at the Scottish Rite in Collingswood. Our kids bought us the tickets as soon as they went on sale in September. I had two concerns at the time. First, would Rick be able to attend. Second, I never go out on school nights. I am just too tired. But, this was KRIS KRISTOFFERSON!!!!!!

As things turned out, I was the main concern. For most of the past week, I have been curled up in a ball in pain. Yesterday morning when we went to the oncologist, I was in terrible pain. We had made the morning appointment because of the concert. I had to request future appointments be made in the afternoon.

I had given great thought into preparing for this first night out. I decided to eat breakfast. Then, I didnít eat any other meals. I figured if I had nothing in my stomach, I would have a better chance of surviving the evening. No one disagreed with my plan, so that is just what I did. Since I rarely get hungry, it wasnít much of a challenge.

Next, the dreaded mask. I really thought Rick should wear it. He hates anything that draws attention to himself. We were in the second row in the pit Ė only a few feet away from my fantasy heartthrob. Anything that may draw attention to us was good!!!!!! Then our friend Lloyd had the most incredible idea. Why not decorate the mask? The wheels were turning immediately. I could see the head of a devil in red sequins with a silver sequined tongue. Someone was not very happy. I had silver and black sequins, but no red ones. I only have twenty-four hours and I just canít drive to a craft shop. I was fairly sure Rick wasnít going for me! It was such a great idea!

I asked the doctor yesterday morning about the mask. She said, "I say no mask." I asked for a compromise. If anyone near us coughed or sneezed, I pulled out the undecorated L mask. She told him he could just use a handkerchief. I still took the mask and hand sanitizer.

Sadly, I just wasnít as excited as I should have been. For years his album has been displayed (proudly I might add) on top of our china closet. It must have come down when the carpet was installed. I couldnít find it. Yesterday afternoon it hit me. I thought I remembered giving all our old records to Tiffany and Fran. I only bought two albums in the 1970ís. Of course, they were both Kris Kristofferson! It was all I ever played. Tiffany found them both. I attached a sharpie pen to the one I hoped to have signed. The other one would have required writing on his face; that was not happening! I was getting a little more into the mood.

Tiffany was driving us over at 6:45PM. The concert began at 7:30PM. It takes me a minimum of two hours to get ready to do anything. I have to do it in stages and rest in between. Thank goodness for make-up. It hides a multitude of flaws.

Tiff and Ellie picked us up right on time. I slid into the back seat next to Ellie. She wanted to know what was in the bag. I pulled out my album. I said, "This is Meemís heartthrob." Ellie looked at me and replied, ĎMeem, donít be silly; you married Poppy." How does a four year old even understand this.

When we arrived inside, Rick bought me a t-shirt, CD, and glass of wine. I saw very quickly that I was overdressed. Jeans seemed to be in style. Iíve always figured it was better to be over-dressed than under-dressed. I could have been much worse!

We found our seats Ė PERFECT. We were in the second row and the seat right in front of me was empty. The lights dimmed and he walked out onto a completely empty stage. The entire evening was Kris, his guitar, his harmonica, and me. Unfortunately, he was very, very sick. Iím not sure how he made it through the evening, but he did. He was perfect!

Tiffany had contacted everyone she knew trying to get us into a meet and greet. They said that sometimes he comes out after his shows. He doesnít schedule meet and greets. At the age of seventy, he conserves most of his energy for his shows. He left the stage at the end and returned to his tour bus. I asked one of the soundmen if he thought Kris might sign my album. He told me no promises and took the album.

The entire place was now empty except for a few police and tech crew. I wrote my name, phone number, and address on a piece of paper and approached one of the police. I was asking her if they could get my album and call me so I could pick it up. Another officer called me over. I told him I knew that Kris was very sick. I really didnít expect anything. He told me I should really go sit down and wait. So, I did. A few minutes later, the man who had taken my record returned with it autographed. He went out to his tour bus for me. We called Jason to come pick us up. I donít think I was able to finish an entire sentence the whole ride home.

Mostly, I was glad he didnít come out to meet people. He was very sick. Neither Rick nor I could have gotten close to him. I was very careful handling the album. I held it by the edges. As soon as we were in the house, I put it in a safe place and washed my hands.

Rick was wondering how we might display the autographed album Ė "Thanks, Nancy Peace Kris Kristofferson." He was thinking about a shadow box. I could see it already. The album, the tickets, my t-shirt with the tour schedule and my silver sequined shoes I had worn. He thought that was beginning to sound just a little too big. I said, "Iíve been trying to find something to hang over the couch in the living room." Poor Rick; yes, I was joking!

Before you all think I am nuts (yes, I know it may be too late for that), I have never been star struck. He is my one weakness. And, I donít go to concerts. They are too loud and too crowded. This was a very small venue. Had his concert been at the Spectrum or anything that big, we would never had gone.

It was the first time we have been out to anything like this in about two years. It was a memorable night. I have a very understanding husband!

Tomorrow will be a difficult day. We will be attending the services for David Durkin. This update was particularly difficult to write. A large part of me thought that I had no right to write about something we had done that was fun. Davidís family is grieving. I remember too well the feelings of losing a loved one. The world went on, but I didnít. I was in mourning. It seemed odd that people could go about their lives like nothing had happened. I feel very guilty about trying to do things when I think I should also be in mourning with the family.

I am still in the process of sorting out my feelings. I am locked in a time zone and canít get out. I live doctor visit to doctor visit. Iím scared to death about the bone marrow biopsy in January. Five years is a long time. Weíve been there with my sister and Tyler. When Tyler reached the five-year mark, they told them it would be another five years. I cannot escape the word trial. I thought that when we returned from Baltimore our lives would just return to normal. It didnít happen.

When does the worrying stop? When do you feel healthy again? When do you stop thinking about it all the time? Are we survivors yet; or are we still waiting to find out the final results? This is a very long healing process. I cannot imagine where I would be without the understanding, compassionate doctors we both have.

Monday is my check-up with the doctor. Right now I will settle for just not losing any weight. I should go back the Monday before Thanksgiving. I am going to try for three weeks. Maybe Thanksgiving dinner will help!

Thank you for the new letters in the guest book. They always lift our spirits. The loving support of family, friends, and thoughtful strangers has kept us going.

Until laterÖÖÖÖ.

Love,

Nance

 

November 1, 2006

In Loving Memory of David Durkin

Dear Friends,

It is with great sadness that I write this letter. For those of you who have been following us all summer, you will remember our updates about David. David and his sisters were Rickís students. For many years, his mother worked at Somerdale Park School with Rick. I was waiting for more details before I wrote this letter. I received the following e-mail tonight. It is a beautiful tribute to David. We ask Godís grace and peace for his family and friends.

Love,

Nance

DURKIN, DAVID S.
Went home to be with the Lord on October, 30 2006, after a long and courageous battle due to complications from Leukemia (A.L.L.). Age 35, Of the Westmont section of Haddon Township, David passed away peacefully surrounded by his loving and caring family.

Beloved husband of Yazmin (Enriquez), adoring father to their daughter Emily and proud father of Shawn of Clementon. Devoted son of Thomas J. and Denise C. (Costa) of Somerdale. Cherished brother of Pamela, Jennifer Sillitti (Joe), and Lauren. Treasured son-in-law of Julio and Luz Franjul, brother-in-law Joey (Amy), and sister-in-law Michelle. Dear grandson of the late James and Margaret Durkin and the late Nancy Costa. Also survived by his grandfather Gene Costa (Jo Ann) of Runnemede and Augustin and Milagros Rodriguez of Puerto Rico, and his great aunt and uncle, Jane and Frank D'Ancona. Much loved godson and nephew of Dr. Richard Costa (Helen) and godmother Mary Bradley, and many aunts, uncles, cousins and a niece.

Growing up in Somerdale, he especially enjoyed traveling and camping with his family. He played baseball with the Somerdale Father & Son Association and was a Boy Scout. David was a 1989 graduate of Sterling High School. At Sterling, he participated in cross country and golf. David's careers included telecommunications, sales and his insatiable drive to find new business ventures. David was well known for his passion for dancing, especially in Philadelphia, and his talented hands on skills. David's zest for life was evident in his various adventures which included skydiving, bungee jumping, jet skiing, traveling and he was always searching for his next quest. David's trademark sense of humor and his eternally optimistic outlook will remain in our hearts forever. He was a dear and loyal friend to many. We are all truly blessed to have known him and we are forever grateful that he was a part of our lives. Throughout his battle he never complained and until the very end he was kind and always remained concerned for others. David was a fighter on earth and is now an angel in heaven. It's all clear now!

Relatives and friends are kindly invited to attend his visitation on Saturday morning from 8:30 to 10:30 am at Holy Saviour R.C. Church:50 Emerald Ave., Westmont, NJ. Mass of Christian Burial will be celebrated by Rev. James J. Durkin at 11 am in the church. Interment New Saint Marys Cemetery, Bellmawr. Expressions of sympathy can be e-mailed to the family through our funeral home website www.mccannhealey.com under online obituaries of David S. Durkin. There will be no evening visitation. The family requests no flowers for the visitation. In lieu of flowers, the family requests donations to be made in David's memory for his children. Please send contributions to: David Durkin Memorial Trust Fund: c/o Commerce Bank Haddonfield, 100 Haddon Ave. Haddonfield, NJ 08033.

 

October 31, 2006 HAPPY HALLOWEEN

Dear Friends,

First, apparently I need to apologize for some of my update information. After he read the last one, Fran asked Tiffany, "Does your mom read her updates?" Tiffany calmly replied, "No." Then she called me. She was laughing about Rickís toenails. She mentioned Franís comment. She told me that at one point Ė in Baltimore Ė she considered giving my updates ratings. However, she decided only adults were reading them. And, she figures that everyone reading them just assumes we are both heavily medicated! I think I have been banned from any other stories involving the shower or the cream for Rickís back.

It will probably be a very long time before Rick and I want to know how we survived this incredible journey. It hasnít been easy. When we do read them, I want to remember the happy times and crazy things that happened. I want to laugh when we are ready to go back.

Rickís appointment this morning with the orthopedic doctor was good. The doctor is quite impressed with the progress he has made with his torn rotator cuff. He does want him to continue with the physical therapy at home. He has taken off the boot on his fractured foot. He is wearing a pair of boots similar to working boots. The doctor wants to see him again in four weeks. It was a great appointment!!!

There was one embarrassing moment. We arrived about twenty minutes before his scheduled time. I tried the door to the office and said, "Itís locked." We sat down on some chairs in the hallway and waited. Finally, Rick asked me to check the doors again. His appointment was at noon and it was just a few minutes before. I had been listening for them to unlock the door. The door was never locked; I was pushing the wrong way. I think Rick would have just laughed Ė later Ė if I hadnít explained to the receptionist why we were arriving at the last minute.

The other night Rick drove the red car for the first time since Ė actually I donít really remember the last time he drove. We were only going six blocks to see Nicky and Alyssa. We are still too weak to have the little ones here. When Rick got in the car, he commented, "I havenít driven this car since the drugstore incident." I asked him what he was talking about. He said, "The time you and Tiffany left me alone in the car right after I had been under sedation at the hospital." We both laughed while we reminisced about the disaster. Funny, I donít recall what happened in the hospital, but I do remember Rick driving alone in Baltimore.

Jason was just diagnosed walking pneumonia. This means we canít be near him. That is followed by Ė we canít be in their home. We have been going twice a week to see Nicky and Alyssa. I guess we will be working on a new plan.

Tiffany is still in charge of all our finances. Apparently, she is still trying to balance the checkbook. She and I both feel the need to really balance it. Getting close is not quite acceptable for us. Unfortunately, Rick has been handling the finances for the last two years and close is just fine with him. The other day he mentioned something about getting the checkbook. I told him that I loved having Tiffany in charge of the finances. First, I donít have to worry about missing a payment on anything. Second, we canít spend a dime that she doesnít know about. One of us is a spender and the other is a saver. I have learned than even if you canít leave your home, you can still shop with a computer and the click of a mouse. This works so much better for me. I donít have to say anything; Tiffany has no problem with curtailing the spending.

My sister Donnalee stopped for a visit. She had a cold and was still dressed in her work clothes. She works in a high school. The ritual here is that when you have been out Ė especially around kids or crowds Ė you must change your clothes before lingering anywhere in the house. We had to visit on the back porch. I was telling her about the counseling I am receiving. I mentioned that I am still unable to cry or scream. She volunteered to punch me in the stomach. Isnít it wonderful what my family is willing to do to help me?

Monday morning Rick and I went to see our grandson Nickyís Halloween play. He attends the pre-school in the church at the end of our street. Tiffany dropped us off because the closest parking was at our house! We walked home. This was our first walk since we returned from Baltimore. We were out one time before, but Rick was in a wheelchair.

Rick is doing well with his physical therapy. His mom gave him a pulley device that she had used when she had to do similar exercises. He had to screw it into the wall over the doorway in our family room. Itís a steel pulley with a rope. The rope is wrapped around the pulley and hangs down on either side. Each end of the rope has a loop that resembles a noose. Tiffany was here when the therapist was working with Rick. She saw them work with the pulley. When I walked her outside, she said, "Now I see what that is. I wondered why you had a noose hanging in the doorway. I thought maybe it was a sad attempt at decorating for Halloween." This is a perfect example of life in our home. Our daughter sees what looks like a noose hanging in the doorway and doesnít even bother to ask why!

Rick will see the oncologist on Thursday. I will let you know how things are going after his appointment.

Until ThursdayÖ..

Love,

Nance

 

Saturday October 28, 2006

 

Dear Friends,

 

Happy Halloween!  This has always been one of our favorite holidays.  The house was decorated inside and outside.  We had a big costume party the Saturday before Halloween.  I dressed in costume for school (work) and at home to hand out candy.  Our big Halloween parties ended years ago due to so many serious illnesses in our family.  Last year and this year there is not a single decoration to indicate the holiday.  Last year we missed it completely; we were in Baltimore for a Phase I trial.  Our goal is to decorate next year!

 

Rickís appointment with the oncologist was good.  Dr. Toloposky was happy with his counts.   They are still fluctuating, but that is not uncommon.

 

Withdrawal from painkillers is still difficult.  His legs are still restless at night and he does not sleep well.  He has two more steps to take.

 

We did not see Dr. Crilley on Thursday.  During our visit on Monday, we had asked her about the Dr. McDreamy contest.  She loved the idea.  We had planned to give her the contest paperwork and have her ask Dr. Toloposky about it.  I made the decision to just approach him with the idea when we saw him Thursday.  I did have a concern about the release forms.  You give up all rights to the two-minute video.  They can use parts of it; it can be used out of context; you have no recourse.  I highlighted all these sections for him.  I guess we will find out on Thursday what they decided to do.

 

With the use of the chair in the shower, Rick has been able to get his own shower.  His right arm even has enough range to wash his very, very dark, sexy hair.  He is almost able to rinse out the shampoo.  Last night, when I was drying his feet, he said he had a big favor to ask.  His toenails needed to be trimmed.  Okay, this is a first.  Most people donít want to be near me when I have anything sharp in my hands.  This is real trust!  I looked up at him and asked, ďAre you sure you wouldnít rather have Tiffany trim them?  She used to trim Taffyís nails all the time.  Now, she trims Chewyís nails.  Sheís had lots of practice.Ē  Fortunately, humans donít have veins in their nails.  I thought I did an excellent job.  There was no blood and no screaming.

 

Tuesday, Rick goes back to the orthopedic doctor.  We are hoping that his foot has healed and he will be able to stop wearing the boot.  Tiffany said she didnít think he really needed to wear it in the house.  Then I reminded her that he lived with me.  Wear the boot!

 

Have a Happy Halloween.  Iíll write after Rickís appointment on Tuesday.

 

Until thenÖÖÖ..

 

Love,  

 

Nance

Wednesday October 25, 2006

Dear Friends,

Rick is downstairs doing his physical therapy exercises. He has been waiting patiently for the physical therapy person. He said he would be here between nine and ten oíclock. Rick started without him at eleven. He has regained a large part of his range of motion. He is taking this very seriously.

His appointment with the oncologist was actually Monday. I had the wrong day. Fortunately, Tiffany reads my updates and gave me the correct date. His counts are still good. They move up and down, but they expect that. The red blood count (I think that was the one) had risen just a little. However, we will take that. Dr. Crilley was very pleased with his progress.

His next appointment is tomorrow Ė Thursday. We discussed trying one appointment a week. We will schedule them for Thursdays. I thought if he saw the doctor and knew his counts at the end of the week, it might help him through the weekend. So, this should be our last week with two appointments with the oncologist.

By the way, I mentioned the Dr. McDreamy contest to Dr. Crilley. She loved the idea. She even offered to do the videotape. Rick printed out all the rules and release forms. We will take them with us tomorrow.

He is still dealing with withdrawal from painkillers. This is his first week on the lowest dose in the morning and the evening. The restless feelings in his legs awakens him during the middle of the night. Hopefully, that will soon end. Next week he will only take one pill in the evening. We both have great empathy for people who suffer with chronic pain and become addicted to painkillers. He doesnít think he is in pain anymore, but his body still needs to adjust to the withdrawal.

Next, his fractured left foot. He will see the orthopedic doctor on Halloween morning. Wow, I just had a great idea. I can wear a costume! I donít think I will be able to get Rick into one of his. Yes, he has some great costumes I had made him for the classroom. Sorry, back to the doctor. I think he will be very happy with the progress Rick has made. If everything goes as planned, he will let Rick remove the boot he has had to wear. That means we can finally go for short walks.

My doctor was not exactly pleased with my progress at my appointment on Monday. Somehow, I had managed to lose a pound since my last appointment two weeks ago. I really donít know how that happened. I feel like I take one step forward and two steps backwards. I have another two weeks to gain some weight.

We are both just so tired. The only time we leave the house is to go to a doctor appointment.

Itís rather funny. The transplant is over and you think, "We made it!" The question is, "Where are you now?" Limbo! You want to be positive and stop worrying. But, you donít want to let down your guard. You need to stay prepared for the things that still may happen. If the bone marrow biopsy in January shows no leukemia, will that be the time? Will you think about the next one in six months? Will it have come back? How do you even talk about those fears?

Yesterday, we were on the elevator at Hahnemann. We were headed to the fifteenth floor. Two women were discussing a mutual friend. Her husband had died. It sounded like it hadnít been that long ago. We had to hear about how good she looked! Then, she was dating; she wasnít dating. She finally married the guy. Of course, sheís staying in the house! It was the never-ending ride. I think the elevator stopped at almost every floor and they got off at the fourteenth.

We watched a movie the other evening. I donít even remember what it was. With one little sentence, time just stopped. "Her father just died of leukemia." We were snuggled together on the couch. I just looked up at him and said, "We just cantís get away from it; can we?" We watched the rest of the movie, but the thought hovered over us.

We will get stronger. We will find a way to deal with all of this. We have decided that it is a very slow process; patience is key. Thank goodness I am in counseling. Rick feels we are both benefiting from it. I just want things to be normal again. Well, normal in our way! J

Until tomorrowÖ..

Love,

Nance

J

Saturday October 21, 2006

Dear Friends,

Sorry I havenít written. The last few days have been crazy with doctor and dentist appointments. I also havenít felt well enough to be at the computer. I am hoping today is better.

Rickís appointment on Thursday was good. The doctor is still very impressed with his progress. His only concern is one of the counts is slowly dropping. If it is still dropping when he returns next week, he will probably give him something. I will have to check with Rick about the name of the medication. He has given it to Rick before.

Thursday was a long day. Tiffany picked us up at 1:45PM. We didnít leave the office until after 5:00PM. Our appointment was scheduled at 2:15PM. Now, one would think that waiting that long would be frustrating. You have to know our oncologists. We had already been told that they had had to schedule several add-ons and they had had several admissions that day. We also learned that our primary oncologist was sick; they were short one doctor. We find it comforting to know that Rick will be seen in an emergency. He has been admitted to the hospital enough times that we truly appreciate what it takes to admit a cancer patient. Besides, Rick is comfortable reading or talking and I can curl up in a ball and relax.

Of course there is one other little thing. Iíve told Rick I think we should enter Dr. Topolsky in the Dr. McDreamy contest. We have seen Greyís Anatomy for the first time this last month. I am going to ask our primary doctor on Monday for her advice. The man is brilliant, compassionate, funny, will fight like a pit bull for his patientís best care, and is just plain adorable. Iíll let you know what she thinks about the idea.

I think I may have told you that we finally met with the Physical Therapy person from Bayada. Oh, I know I did. I just remembered the bedroom incident. He called again the other morning at 7:50AM! We were both in bed sound asleep. We were both searching through the bed for the cordless phone. I found it first. I canít see a thing without my glasses, so I just had to answer it. Who calls at that hour unless it is an emergency? I gave Rick the phone. They are having difficulty getting approval for at home PT. He asked Rick several questions. As soon as Rick told me how he had answered, he knew he had given incorrect information. He wasnít awake for goodness sake! I said I would call him back or he could, but this was crucial information. Rick called; he had to leave a message. We havenít heard back from him yet.

Rick is working with great determination on his exercises. The progress is amazing. He is sleeping better because for the first time in almost five months, he can sleep on his sides for short periods of time. Donít tell the PT guy, but we are choosing to ignore the instructions to make Rick get dried off without help. I quite enjoy hearing, "Oh, towel girl." It also gives me the opportunity to closely inspect every part of his body. All kidding aside, that is an important question asked at each visit. Any rash or redness could be a sign of graft vs. host. It is a serious thing that we have learned to have fun with.

For two people who do very little, it is amazing how tired we are. We go to sleep around 11:00PM. We actually go to bed at nine and hope to fall asleep; itís just not that easy! We wake up at 10:00AM. Sometimes, I think if we did something we would have more energy. Then, I remember that I am still so weak that I have to lie on the bathroom floor to dry my hair. I have to sit on the floor to put on my make-up. I have no energy to play with our grandchildren. Poor Rick; what is he going to do with that heavy boot on him fractured foot? Neither of us could walk to the corner! Oh well, we are both adjusting to the fact that this may be a slow process. Acceptance is a crucial part of the process. We lean on each other Ė figuratively and literally! J

We both want to express how grateful we are to our friends for the help they have given us. Rene, Doreen, and Lloyd have all shown up with dinners. That is not all that simple; I am highly allergic to garlic and onion. They seem to be key ingredients in all dishes Ė except desserts! Our freezer is filled with dinner for two individually packed in microwave ready portions. Not only have you spoiled us, it gives Tiffany a break from worrying about us. Each of them has also come to visit. It has been our first contact with the outside world, excluding doctors and hospitals. We have loved it.

Please accept my apology for having not sent written thank-you notes. It weighs heavily on my mind. Honestly, I am still just a little too weak. My handwriting is somewhat shaky. I am also scared. I am not sure how I will be affected by the generosity of our friends, family, and strangers. There are many emotions involved Ė thankfulness, love, astonishment. However, there is one emotion that one may not think of Ė embarrassment. I think it is why I havenít wanted to see or deal with the benefit funds. We have been deeply humbled by the outpouring of support we received. I do promise I will face the notes soon. It is important to us to thank each one personally.

Oops, blackout on New Jersey Avenue.

It is now Sunday morning at 6:00AM. I couldnít sleep. Something happened to a transformer early last evening. I heard what sounded like thunder and everything went dark. Funny, I donít know what time it happened and I donít remember when the lights came back on. I had one concern Ė was my update still here. And, there was nothing I could do at that point.

It isnít the middle of the winter; we are not in a heat wave; no one in the house requires electricity to maintain a medical device. I preface my next paragraph with these statements because I do know that a blackout can be life threatening. I donít want anyone to think that I do not realize the seriousness of a power outage.

Rick and I were lying on the couch when it happened. Our movie had just ended. We thought that the timing was rather good. We checked on Tiffany. She and Ellie had several options. The power was only out in a small area. She decided to take Ellie to her dadís house. Jasonís street would have power, but they were in Cape May for a wedding. We could have gone with Tiffany or to Jasonís home. We all have each otherís keys.

For some odd reason, I found the blackout relaxing. We hadnít had dinner, but we have a gas stove. We decided to locate our oil lamps. I washed them and Rick filled them. We only used one, but we had several ready. I lit candles. As the last ray of light disappeared behind the trees, the house grew dark. The soft glow of the oil lamp and the candles cast a warm, romantic glow throughout the house. I loved the silence. Time stood still. I watched the soft lights dance across the walls and ceiling. A gentle peace descended over the house. Then that peace enveloped my entire body and all my fears disappeared. Life was good; life was happy; life was healthy. All was right with the world.

My feeling of peace was shattered when the house burst into life. The lights glared; the television blared. Everything went back to normal. I preferred the illusion. However, I have burned that little slice of peace into my memory. It will be neatly tucked away with all the wonderful memories that we conjure up when we need them most.

Sorry, this is what happens when I am left alone with the computer. Rickís next appointment is on Tuesday. I have an appointment with my primary care doctor on Monday. I see the psychologist every week. Iím surprised he hasnít given up on me. I canít figure out how to not internalize stress. I thought being happy was good. Is it possible to be so happy that you can fool yourself?

Until laterÖÖÖÖ..

Love,

Nance

Tuesday October 17, 2006

Dear Friends,

We have good news all over the place. Rickís appointment went very well yesterday. Dr. Crilley is amazed with his progress. His counts were great. I weighed myself when we were there. I am just ever so slightly under 100 pounds. The Physical Therapist came to the house this morning. Rick has his set of exercises written out for him. He is already doing very well considering where he was only two weeks ago. We have had two great days!

We will be going back to the oncologist on Thursday. Dr. Crilley was ready to make the appointments only once a week. We just werenít ready to make the break. She is so thoughtful and understanding. She told him that he could come in every day if it made him feel better. Besides, he hasnít felt well this week.

The doctor is fairly sure that she knows the reason for how he feels. He has been on Oxcycodone for a long time. He takes the long acting ones two times a day. The pain in his shoulder is subsiding. He wants to get off the painkillers. We tried to do it too quickly. He was probably suffering from withdrawal symptoms. Just the thought of addiction is frightening to both of us. He has never taken more than the prescribed amount. I can understand chronic pain and addiction to painkillers. You donít understand until you have been there.

Labs Results:          8/9      8/11      8/16 8/18 9/19 10/17

White cells             5550     3590    2990 3260 3300 5300

Red cells                3.62      3.43      3.05 3.19 2.79 3.54

Platelets                 121       112       125 139 106 125

ANC                       4070     2350     2003 Pending 2200 3900

 

Some people have asked for a list of normal counts:

                    Low Range     High Range

White Cells       4500             11,000

Red Cells          4.50             5.90

Platelets           150               350

ANC                 1500             7800

 

Now, for the bad newsÖ The Physical Therapist asked so many questions today. He wanted to know what things Rick needed help with. He told me that Rick must get showered alone and dry off alone. I told him, "Thatís the best part!" Fortunately, I didnít tell him that I have to rub cream all over his back, neck, and chest. That is where he had the rash. The cream has helped his skin heal. Slathering the cream on him was a direct order from the graft vs. host doctor at Hopkins. Besides, I love the look on his face when I massage his neck and shoulders. I really donít care what the PT guy says to this one; Iím not stopping!

Now, the disturbing news... He wanted to see our bedroom and our bed. Eight months ago I wouldnít have cared. Every Saturday I cleaned every room in the house and disinfected everything. Now our entire second floor is a mess. Right before he had come, I had to decide whether to get the laundry to fold or make the bed. I made the wrong decision.

Tiffany called while they were upstairs. I was curled up in a ball on the couch in the TV room; thatís because I couldnít crawl under it. Then Tiff asked if I had called the right number for therapy. Was I sure it wasnít a 900 number. I mentally pictured our bed. It would be littered with my headset, a small radio with Rickís headset, heating pads, lots and lots of pillows, TV remote, and at least one cordless phone. Yes, sadly to say, sometimes we both grab a phone and donít know it. My Rosary was laying on the bed. On my nightstand were individual servings of applesauce and pudding. And, what nut case has her wedding gown hanging on the bedroom door. Tiffany assured me that he would probably think it wasnít mine. Thanks!

Last night Rick received a phone call from his high school friend Jimmy Serock. It was so nice to hear from him. We had seen him just before we had left for Baltimore. He and his wife only live a few minutes away from us. It wonít be long before Rick is up for the company. We both look forward to the visit!

At my fifteenth high school reunion, a classmate (male) asked me, "Isnít it boring living in the same town where you grew up and working in the high school there?" In a few seconds my life seemed to be reduced to boring. Iíve thought a lot about that question. Obviously, it was 1982 and I still remember it. Itís not boring. Itís comforting, peaceful, and fun. We know most of the people in town. There is much to be said about maintaining high school friendships. There are memories and bonds that many people will never understand. I could tell him this at our next reunion if he is there, but somehow I doubt that he will ever remember asking me the question! J

I will keep you posted with Rickís progress.

Until thenÖÖ.

Love,

Nance

 

Sunday October 15, 2006

Dear Friends,

No, there is nothing really new to report. Rick is downstairs watching the Eagles. In a little while, I will go down and pretend to be interested in it. He knows I am not a big football fan, but itís the thought that I make the effort to be interested.

Rick goes back to the oncologist tomorrow afternoon. We were hoping for this to be our first week with only one appointment. He is not ready to do that. He is going to ask to keep the two appointments each week. He has not felt very well the last two days. He feels very shaky. He is afraid that his levels may be too high or too low.

Weekends are difficult. Every time he has been hospitalized, it has been on a weekend. He knows he begins to worry on Friday. We have discussed it; however, that doesnít make the fear disappear. I deal with the same fears. Hey, at least we know we are not being completely rational with the whole thing. That should count for something. J

I, on the other hand, am slowly regaining my strength. I eat something every hour Ė well most of the time. I rest. I read. I write Ė here and in my personal journal. Iím talking to people and seeing some friends. I realize that I had become a recluse. I am still listening to both my doctorsí orders.

Sometimes, the guilt is difficult. I have watched Tyler, Rick, and my sister Donnalee all battle cancer. Iím battling what I did to myself. I understand that I didnít intentionally do it. I just think I should have done better somehow.

We are simply enjoying each otherís company. We can sit quietly in the same room and just be happy being together. We are lucky; we like each other. Some people donít understand us. BFF Ė best friends forever J I guess that is what happens when youíve been friends since high school.

I may not have to watch the Eagles. I went down to check on Rick. They are losing miserably. Iím not an expert on men, but they do react differently. I believe the saying is that misery loves company. They donít seem to need company if the team is losing. They want company when the team is winning. They want someone to scream with them. They want someone to watch that spectacular play. The truth is that I did get pulled into last weekís game. It was personal because of T.O. And, there were spectacular plays. My screaming was genuine.

I will be back. I just received a call from Jason; Alyssa is up from her nap. I am going to visit. Rick is not feeling well enough to go. Here is the bad news. Bill (Jasonís father; my ex) is on his way over to help Jason hang sheet rock. We never finished papering our bedroom because we could not work together. It was unfinished for years! This could be an ugly sight! L Itís okay; they both know what they are like!

Iím home. It wasnít too bad. I even heard some laughing from upstairs. They even let Nicky help them. AJ doesnít seem fazed by any of it. I worry constantly. Usually, I just try to avoid those situations.

Yesterday was a sad day for us. The place where we went dancing closed its doors for the last time. No more country dancing. We went dancing every Saturday night for many years. In the summers we went on Wednesdays also. They had lessons and dancing then. On Saturdays it started at 5:00PM and was over at 9:30PM. When Rick was feeling well, we danced from beginning to end. I wish we had been well enough to go say good-by to all the friends we had made.

Well, itís six oíclock. We forced ourselves to eat dinner. It is time to get showers. Donít we have an exciting routine? First, I get my shower. Next, I place the shower seat in the tub for Rick. Then, I check over his body for any signs of a rash Ė graft vs. host. He gets his shower. I wait for the signal that he is done, "Oh towel girl." His arm is getting better, but not enough to dry off his body. Actually, come to think of it, his arm is much better; I think he likes the routine! J

Iíll let you know how he makes out at his oncologist appointment tomorrow.

Until laterÖÖÖ

Love,

Nance

Thursday October 12, 2006

Dear Friends,

Rick had his appointment with his oncologist this afternoon. He is doing very well. The doctors are happily surprised at the progress he has made in such a short time. We did not ask for a copy of his counts today. I promise to get that all together by next week. His next appointment is on Monday afternoon. If everything is still going as well as it is now, he will only have one appointment each week.

His shoulder is feeling a little better. It is probably the cortisone. He is also doing the exercises from the physical therapy person at Hopkins. It is taking a while to arrange for physical therapy at home. He is also able to cut back on the painkillers. Hopefully, he will be off them within the next two to three weeks.

His fractured foot is healing. If I stopped banging into it and kneeling on it, it might heal even faster. At night while I sit on the floor helping him take his boot off, I have a habit of kneeling in front of him and kissing him. I always seem to kneel right on the bad foot. Hey, Iím giving him a kiss at least! J By next week he should be in a hiking boot. Then, his next move is into a regular sneaker.

His hair is growing back rather quickly. I think it looks almost black. I call him Ė Mr. Mysterious! Tiffany thinks it could be very dark because the sun has never hit it. I donít know. Itís also very, very soft.

It has only been within the last few days that Rick has started to really feel better. He keeps a lot inside. Sometimes, he just doesnít want to talk about it. I knew the other reason Ė ME! He doesnít want to worry or upset me. He is excited about how he feels. For the first time, he really feels like he may beat this.

We discussed the topic of surviving cancer. The last chapter in the huge three-ring binder handles this. We havenít gotten through the beginning of the book yet! I do remember thinking that the chapter sounded rather stupid. Itís not. We are both a work in progress.

I cannot thank our friends enough for the letters and notes from my last update. I was surprised that so many people are still reading my ramblings. We are so blessed. Some people are still asking about the benefit. We are very grateful for the outpouring of financial support we received. It will be a long time before Tiffany finishes with the bills. She is in charge of all our finances. Please, THIS IS NO LONGER A BENEFIT. We appreciate your generosity and desire to still help. However, I believe that we will be fine. We should not go into debt. That was our prayer and it was answered. I would urge anyone who is interested in making donations to give to others in need.

I am very slowly getting better; I think. I would like to say I am doing this on my own; Iím not. I am in counseling. I donít know how to get better on my own. I will tell you that I am very scared.

I am one of the lucky ones. I have someone helping me who is very good. I have been through more counselors, therapists, hypnotists and psychiatrists trying to get rid of my needle phobia. No one helped me. Now, I have a plan. He tells me what I need to do to get better. It sounds so simple, but I am struggling with it. I think it took a long time to get to this place. I am working on baby steps.

I donít have an eating disorder. I am just too tired to eat and I am not hungry. The sad thing is that I look in the mirror and it scares me. It doesnít look good; it looks sick. The sight in the mirror and my desire to play with the grandkids are the things that compel me to eat.

I think I am beginning to understand how I arrived at this new low. The problem is trying to change old habits. I think I have learned how to hide sadness and fear. Iím good at laughing and finding the fun things in life.

My list looks so easy. I stare and it and think about how I am going to succeed. I canít remember the last time I said, "I canít do it." My entire life I have always believed I could do anything Ė well not brain surgery or needles Ė but letís be fair. I feel weak, tired, helpless, and very vulnerable.

I am very thankful for all the wonderful things our friends have already done to help us Ė alright me. I am grateful for the support.

Until laterÖÖ

Love,

Nance

Monday October 9, 2006

Dear Friends,

I had asked Tiffany to write this update for me. She wasnít sure what to say. I think sometimes it is best to just go with the truth.

My body has finally given into the stress and exhaustion. I did not know that it was possible to destroy your own body, but I have learned that you can. I am at that pivotal point. I think my doctorís first choice would be to have me admitted to the hospital. She has given me two weeks to gain some weight. I still am not sure how I reached this point. I believed that I was too strong for this to happen. I could deal with anything. Apparently, I was wrong. Iím here. I am scared!

I did return to work for two weeks. I donít remember days and dates, but I think I have been home for a week. I cannot return to work until I have regained my strength and health.

I am doing what I have been told. I am eating constantly and resting. I am looking at short-range goals. We miss our grandchildren. I am too weak to even play with them. That is the first thing I want to do.

Rick has been doing very well. He is taking care of me. His counts are still good. The doctors are happy with his progress. He saw the orthopedic doctor. We are arranging for physical therapy here at home. The doctor would prefer that Rick go to an office, but I explained that we couldnít fit in any more appointments. The fracture in his foot is healing. He is still in the removable boot.

We are a great pair. Rick sees it this way. It is better that we are both sick at the same time. We already lost this summer. Suppose I hadnít hit this point until next summer? Too bad he doesnít like to write. This would have been his chance to tell stories about me. J What would I do without him? I guess itís his turn to make me laugh.

We are fortunate that our kids live nearby. Poor Tiffany thought things would go back to normal when we returned from Baltimore. So did I!

I am slowly learning to accept my human weakness. This is not easy. For several years I watched Rick deal with treatments that left him very sick. I will never comprehend how he managed all of it. I could not have done what he did.

I only know that we are here for each other. I know that our children are here for us. Our family has closed ranks and is protecting both of us. We are very blessed and so thankful.

I have been writing in my journal. I have been too weak to sit at the computer. I will continue with updates. If I am too weak or sick to write, I will ask Tiffany to just write a short note.

There are still so many funny stories that I havenít written. Until then, Tiffany is going to start to post the pictures on the web site.

Until laterÖ.

Love,

Nance

 

Wednesday October 4, 2006

Dear Friends,

This has been a devastating week. I have had to turn off the television. The heartbreaking news has left everyone stunned. The things with which we are dealing pale in the wake of the events that have taken place. Our family prays for all those affected. Life is so precious and fragile. There can never be too many hugs, kisses, and saying "I love you." Treasure every moment that you have. I do not understand this world.

I promised an update on Rickís appointment with the orthopedic specialist. I have only one small problem. My specialist placed me on a different prescription for pain. Tonight Rick and I realized that I am having some adverse reactions to it. I am shaky, lightheaded, and a little incoherent. Typing is very tedious right now. I promise to do my best.

Rick has a partially torn rotator cuff. His arm is now frozen. The doctor feels that he will treat this conservatively. Tomorrow we will make phone calls to begin physical therapy. Rick also endured a cortisone injection. His doctor said that the effects of the cortisone could take up to 72 hours.

Rickís foot is healing very well. We did explain the circumstances that sent Rick to the podiatrist. We asked if we could use this doctor for his foot also. That at least eliminates one specialist. He pressed very hard on Rickís foot. Rick is now dealing with pain in that area. He has spent most of the evening with ice on and off the area.

We have had a very difficult day. Between the two of us we have had difficulty determining which day of the week it is. That question has arisen several times. We are torn between, Tuesday, Wednesday, and Thursday. We finally work it through by using doctor appointments.

I went to see Jason, AJ, and the kids tonight. I thought I was feeling a little better. I was in the middle of a story when the conversation changed. About a half hour later, we were sitting in a coffee shop on Haddon Avenue. Everyone was talking and eating. I remember looking up and saying, "I said just pull over to the curb." The silence was deafening. Jason and AJ were looking at me. Even Nicky knew something had happened. In my head I had resumed the conversation we had been having earlier. I just picked up like it had never stopped. I scared myself.

I arrived home with Rickís milkshake. He had had the hiccups again. Sometimes the cold milkshake will get rid of them. He had already had them for several hours. He was sitting in his recliner holding his milkshake. I told him the story about my lapse of memory while I was with the kids. He started waving his hands and talking without making any sounds. Things were getting worse. I asked, "Have you lost your voice?" He shook his head no. "I canít hear you; am I going crazy?" I was beginning to panic. Then, I asked, "Are you holding your breath?" YES! He had thought the hiccups were gone and he wanted to hold his breath as long as he could. Bad timing!

After some discussion, we both decided that I should not take the new prescription tonight. I will call the specialist tomorrow. Iím not sure where the two of us should be, but alone probably isnít good! J

Tonight again I will pray for peace and healing for those who have suffered so much this week.

Until tomorrowÖÖ

Love,

Nance

Monday October 2, 2006

Dear Friends,

Rickís appointment at Hahnemann went very well today. His doctor is happy with his progress. If the doctor is happy, we are happy.

Rickís hair is slowly growing back. It looks like it may be much darker than it was. We were discussing the color when Dr. Crilley came in. The timing was perfect. I had been trying to describe the color to Rick. I think it looks like our doctorís hair color. I may not recognize him in a little while. Iíll keep you posted on the color. Iíll just keep comparing his hair color to Dr. Crilleyís hair color. J

I may have written in one (or many) of the updates that we were not sure how we felt about Rickís transplant doctor at Hopkins. Our specialist at Hopkins had left the hospital just a few weeks before the transplant. We had loved Dr. Ian Flinn. Our new specialist was Dr. Richard Jones. We joked that with a name like Richard he had to be wonderful. However, we just couldnít adjust to him. We saw him every day when Rick had been admitted to the hospital. We would tell people how we felt about him. They all said the same thing Ė research doctors are usually good with people.

Last Thursday at Rickís appointment we met Dr. Jones. His nurse practitioner Audra explained that she is constantly telling him he is about to meet a new patient. He has taken many of Dr. Flinnís patients. He walked in, smiled this big grin, and announced, "I know you!" He had remembered Rick from his rounds in the hospital. I think at that moment Rick and I both knew we were going to love our new doctor. He sat down and discussed the progress Rick had made. He never made us feel rushed. He wanted to make sure he had answered all of our questions.

Rick and I had tried to remain neutral about our feelings for Dr. Jones. The only reason was that our local oncologist, Dr. Crilley, had great things to say about this doctor. I believed that we had a great doctor, but I wasnít sure about his personality. Rick and I both agreed that if Dr. Crilley spoke so highly of this man, there had to be more to him than brains. We were both glad that we had reserved judgment. We would have been very wrong. It is also easy to see why we have so much faith and trust in our local doctor.

Rick and I have spent years studying CLL. We thought we were experts. We are in way over our heads at this point. We almost always walked into the doctorís office with a list of questions. Many of the questions were about new drugs or trials. Last Thursday Rick asked me if I had any questions. I wouldnít even know what to ask. I am very thankful for our doctors and nurses in Hahnemann and Hopkins. We have placed our faith and trust in them. We both feel very safe in their care.

I promise to list Rickís counts soon. I have to get them together. We are still recovering from the move home from Baltimore. I can tell you that they are still going up and down. I think that is one of the reasons I have tried to put this off. I donít want to see them. The doctors tell us that this is normal.

Rick will see the orthopedic specialist on Wednesday. Iíll let you know what course they decide to take.

I promise to divulge more of our mishaps from our Hopkins trip Ė that probably wasnít the best choice of words. The good news is that Rick doesnít have any more broken bones or injuries. And, I havenít lengthened his recovery time.

Until WednesdayÖÖ.

Love,

Nance

 

Sunday October 1, 2006

Dear Friends,

I cannot believe it is already Sunday night. I promised I would write an update. I have just been too weak and tired to write.

Rickís appointment last Thursday really needed an update. Our day at Hopkins was just like old times. That usually means "poor Rick, what has she done to him now?" Not to worry, just the usual little mishaps. J

Tiffany had to drive us to Baltimore. I kept insisting I was able to get us there. She kept pointing out that I couldnít even drive myself to work. I finally caved. The truth was that I knew I was not able to make the drive. I was worried enough about the ride and the long hours in the hospital. Ellie was very good about the trip. Of course, that may have been because her mother didnít tell her where we were going! At one point during the ride, Ellie asked, "Mommy, why do Meemís eyes keep going up?" That would have been me trying to impersonate someone still conscious.

We were very lucky when we arrived at Hopkins. The parking lot located under the building in which we had our appointment was still open. I jumped out of the car as soon as Tiff had parked. I was determined to help. I went to the back of the car to get the bags we needed out. I hear things falling on the cement floor. Rick is just getting out of the car. Tiffany is behind we with Ellie. I asked what he was dropping. That was when some woman pointed out to me that I was dropping the entire contents of my bag onto the ground. Tiffany decided to send Ellie and me ahead to try to find a wheelchair. I knew she just wanted me out of the way.

Our mission was successful; Ellie and I had a wheelchair waiting at the elevator door. We got him settled into the chair and headed off to registration. He was taken almost immediately for his labs.

This is where problems may arise. Rick and I have just become used to sitting in the waiting room for hours. We always leave earlier than we had on Thursday. Rick told me that since Tiffany was driving us, we could leave later. Neither Tiff nor I could make any sense of that. She drives more like the little old woman. I drive like a maniac. We have always built in several extra hours into our driving time. There have been times when we have had to sit for hours in a traffic jam on 95.

It was only about 11:15AM. Rickís labs were done. However, we have registered and the doctor will think we are sitting in the waiting room. Once in a great whileÖ.the truth is that this happened one timeÖ.. the doctor will have a cancellation and you are called early. Actually, I would bet that the doctor didnít really have a cancellation that day. The patient probably hadnít built in those extra three or four hours for the trip and there was an accident on 95. Rickís scheduled appointments on Thursday were 1:00 Ė labs and 2:00 doctor appointment. Usually the doctor is running late and we just wait even longer.

This trip was different. We couldnít ask Ellie to sit for over three hours in a waiting room. We had already discussed going to the cafeteria for lunch. Rick and I talked to the receptionist. We explained our dilemma. She checked the doctorís schedule. He had two other patients ahead of us. We had time to go to the cafeteria.

Mishap 1 (I refuse to think of the mess I created in the parking building as a mishap) We had to go to the second floor to get to the cafeteria. I am pushing Rick in the wheelchair. The elevator doors are just outside the receptionistís desk. As I turn I see that one of the elevators is going up; the white light is on. Without a second of hesitation, I ran towards the door. I made it. Unfortunately, the thing that kept the door from closing was Rickís broken foot. Fortunately, the boot that he has to wear protected it. My driving privileges were revoked and my license suspended. Tiffany took charge of the wheelchair. I told you it was just like old times.

If I remember correctly I had four mishaps that day. All four involved his broken foot. I am afraid that the other three will have to be spread out in the coming episodes. I have reached the length of time I am able to work at the computer.

Rick has his appointment at Hahnemann tomorrow. We are expecting only good news. I will keep you posted.

Until tomorrowÖÖ.

Love,

Nance

 

Tuesday September 26, 2006

Dear Friends,

Rickís appointment with the oncologist went well today. His counts continue to improve. I promise to give them to you over the weekend.

My days are just too hectic to write. By 6:00PM I am trying to get things ready for breakfast. Next, I jump into the shower. Then, I get Rick into the shower. Bill and Maureen gave us a chair for the shower. It is usually 7:30 before we are both ready for bed. I still have to get him his meds and something to eat with them.

Once he gets upstairs, itís too difficult to get the boot back on to go downstairs again. Itís much easier for me to get the things and run them upstairs. By 8:00PM I am usually finished. Then I go to bed.

The doctor called the orthopedic specialist at Hahnemann to see if Rick should have a cast on his foot. I almost started crying. I told them, "I canít do that! Itís already almost impossible to get him in the shower every night." Fortunately, the specialist said the removable boot was okay.

Thursday we head to Baltimore. Unless there is earth-shattering news, I donít think I will be able to write until the weekend. We leave early in the morning and donít get home until early evening. Itís a long day in the middle of a workweek. I am so sorry; I really miss keeping everyone up with the news.

Until laterÖ..

Love,

Nance

Friday September 22, 2006

Dear Friends,

Iím not sure where to begin. I warned you that this would be a roller coaster ride. I know this family. Rick has fractured his left foot. He and Tiffany were at our family doctor, next to South Jersey Radiology, and finally to the podiatrist.

Last week, Rick tripped on the carpet. I think this happened in the middle of the night. It was soon after he was discharged from Hahnemann. We were having difficulty deciding if his foot was still swollen from one of the symptoms that sent him to Hahnemann, or if it was swollen from twisting it. Weíve settled on the latter choice. We noticed he was developing a nasty bruise. Next, he felt an abrasion on the bruise. It was becoming difficult to walk. It was getting worse instead of better.

Most of their day was spent in doctorís offices. He left the podiatrist with a removable boot. He explained to the doctor that he already had a torn rotator cuff. That was making it very difficult to get in and out of the tub. It is very important that he showers daily. Iím not sure what we would have been able to do with a cast. The doctor placed him in a removable cast.

It is 6:30PM; Rick is in bed. I am going to take a quick shower and fall into bed next to him. We are both too exhausted to even think. Hopefully, tomorrow I will have a little more strength to write.

Until thenÖÖ..

Love,

Nance

Thursday September 21, 2006

Dear Friends,

We received wonderful news today. The bone marrow biopsy shows that only 1% of Rickís blood is still his own blood. We donít really have any other information. We will learn more at Hopkins next Thursday. We just know that this was very good!!!!!!

Rickís other labs were good. I will write this weekend with all the news. I am finding that returning to work, going for doctor visits, and trying to maintain any type of life is a difficult balancing act. So far, I havenít figured out how to balance anything. Mostly, I am just exhausted all the time.

Thanks for still staying in touch through the guest book. Your notes and letters help us make it through the days.

I promise to write over the weekend.

Until thenÖÖÖ

Love,

Nance

 

Tuesday September 19, 2006

Dear Friends,

Rick had his check-up today at Hahnemann. In spite of how he feels and looks, the doctor was happy with his progress. This alone was good news. It is difficult to understand how you should feel at this point in the transplant.

We finally remembered to ask for his labs. This was the last time I could find them posted in the updates: 8/18 Could it be that long?

Labs Results:          8/9      8/11     8/14    8/16 8/18 9/19

White cells             5550     3590    3190   2990 3260 3300

Red cells                3.62      3.43    3.30    3.05 3.19 2.79

Platelets                 121       112     130     125 139 106

ANC                       4070     2350    1750   2003 Pending 2200

 

Some people have asked for a list of normal counts:

                    Low Range     High Range

White Cells       4500             11,000

Red Cells          4.50             5.90

Platelets           150               350

ANC                 1500             7800

Rick continues to lose weight. He is also exhausted all the time. His labs also indicated that he is anemic.

We may have found the reason for the weight loss. He still has hand tremors. He is in constant pain in his right arm. Eating has become very difficult. Instead of looking forward to a meal, I think he dreads mealtime. Itís not much fun if your wife has to feed you. The doctor did give him a medication that should improve his appetite. He said we would know if it helps in ten days.

The fatigue comes from several sources. First, the oxycodone that he needs to take for pain causes fatigue. Next, the pain in his arm keeps him from sleeping at night. The anemia causes fatigue. His body is still trying to figure out what happened. The transplant causes fatigue.

His doctor was very good. He explained in detail each of these problems. Rick felt better after listening to the doctor. He has become discouraged with his progress. I should say lack of progress. He feels frustrated because he is too tired to do anything.

The doctor said that Rick is just where he should be at this point. It takes some time to recover from a bone marrow transplant. He told Rick to focus on a specific day one week. The following week on that same day, he should compare how he feels. He wonít be able to judge on a day-to-day basis.

Next Thursday we go back to Hopkins for his check-up. We will find out what the bone marrow biopsy report is. Each time we go to the specialist at Hahnemann, we plan to ask if he or she can call Hopkins and get the results. There are just so many questions that we always forget.

I must get to bed. Five oíclock comes very early. Today was my first day back to work. It was a blur. Tiffany, Ellie, and Rick, picked me up from school and we went right to the doctor.

Our next appointment is Thursday. Until thenÖ.

Love,

Nance

 

Sunday September 17, 2006

Dear Friends,

Itís almost 3:00PM and the day has been quiet. Rick is watching his football game. I have just finished getting all my things together for my first day back to school.

I had forgotten that I hadnít seen any of my things since last May. I was in Baltimore when Jason brought them home from school. Some things may still be in Jasonís car. J

The easiest things to find were my Spanish notebooks for my regular education Spanish I class. I havenít been in this class for years. However, I keep all my notebooks and other school things filed in the attic. I knew right where to find them!

I used to be so organized with schoolwork. These last few years have wreaked havoc on my routines. If my brain decides to function on Tuesday, I should be okay. If my pain has subsided by Tuesday, I am not worried about the day at all.

I may not write tomorrow. I will be in the surgical center. I have no idea how I will feel when I arrive home. I will let you know how Rick makes out at his oncologistís appointment on Tuesday. We must get a copy of his counts. Things have just been so crazy that we keep forgetting to ask. They tell us they are good. That is all we have heard since we returned from Baltimore. That doesnít mean they havenít told us what the counts were; it just means we didnít hear them.

Until tomorrow or TuesdayÖÖ.

Love,

Nance

 

Friday September 15, 2006

Dear Friends,

Just another typical day here. We saw Rickís oncologist at Hahnemann at 9:00. First, he had labs done. The doctors agree that his symptoms were from the med prograf. That is the growth factor that he takes. The doctor told us that it is not uncommon to take time to adjust the levels until they are correct. This is just another example of how dangerous these medications are to the body. I could not believe how sick he was by Monday.

Our chemo nurse came in the room to tell us there was a problem. Our Aetna Insurance would not allow Hahnemann to run the labs. They had to be sent to Quest. This problem seemed to arise from the transplant being done at Hopkins. They could do the labs in Baltimore. Hahnemann, up until now, has always done the labs in the hospital. This was a first. If you remember, the insurance would not allow the transplant at Hahnemann. Waiting for lab results until Monday is dangerous. He canít take his prograf until they see the labs. After this past week in the hospital, one could see why the prograf levels in his system are critical.

I pulled out my cell and called Tiff. She called our contact person at Aetna. She informed the woman of the seriousness of the labs being done immediately. The woman told Tiff to have the chemo nurse call her right back. In less than five minutes, Connie our nurse was dialing the number. The woman didnít answer; Connie had to leave a message. When we left over an hour later, Connie had not heard from her. I told Connie I had no idea what we would have to pay for the labs, but we didnít have a choice. I am waiting to hear back from Connie about the insurance and when and how much prograf Rick should take today.

Rick is doing much better. He is just very tired and taking a nap while I type. The swelling in his feet is almost completely gone. He is not as dizzy. He is coherent and his speech is no longer slurred.

He had me very scared in the hospital. He would say something that didnít make much sense; then he might say some crazy word. As an example, he said, "I suggested"Ö short pauseÖ"mountain." Then his eyes rolled up in his head, his eyelids slipped over his eyes, and his mouth dropped open. He stayed like that for 1 Ĺ to 2 minutes. I watched the clock and his chest to make sure he was breathing. Then he opened his eyes and did not remember what had happened. He told me he was dreaming and talking to me at the same time. This pattern continued from breakfast until almost noon. I tried to explain this to one of the Fellows. He told me Rick was tired and I should let him sleep. Passing out for a minute or two and waking up is not sleeping! I didnít bother trying to explain this to the Fellow. I also had two other Fellows tell me that Rickís voice sounded fine. I stopped short of telling both of them that their English was not exactly fluent, so they couldnít judge his speech! As you can see, there was a steady stream of Fellows in and out of our room. This morning I told our oncologist about these incidents.

They were doing lots of tests to rule out a stroke. He had all the symptoms. On Monday morning about 10:00, a transport person arrived with a wheelchair to take Rick for his MRI. I accompanied them. We had been to this place on several occasions. I sat in the room with Rick during the MRI. Rick was in terrible pain because of his torn rotator cuff. I explained this to the tech guy and he didnít care. Rickís head was strapped into this headgear and the upper portion of his body was rolled into this tube. I sat at the end where his head was. Next, the guy lied about the amount of time Rick would be in the tube. I could see the clock in the other room. Finally, the torture was over. Rick felt terrible. I got him into the wheelchair and out of the room. The tech said he had called transport. It was 12:15. Rickís lunch was ordered for 12:30. At 12:20 I explained to the tech guy that Rick had to get back to his room. He hadnít had dinner the night before. He needed his lunch today. Also, because of his transplant his food cannot be left sitting for over twenty minutes. It canít be heated up again either. I told him I was taking Rick back to his room. The guy said, "Thatís against the rules. You canít do that!" Rick was just sitting in the wheelchair feeling cold and in pain. I told Rick, "Iím giving him five minutes and then I am taking you." I gazed around the waiting area looking for our escape. I had noticed that the transport guy had to enter a code to open the doors. Then, my eyes hit on the button "Push to Open Doors." At 12:25 I walked into the guyís room and said, "Iím taking him now. Call whomever you want and tell them whatever you like. Weíre leaving!" There was a woman sitting at a computer in the same room. She walked over to me and told me which elevators were for isolation patients. I thanked her and left. We arrived back in his room at 12:30. Lunch was on his table. It was still warm, so I thought it was okay for him to eat it.

Rick was having problems with his memory the first few days. One day he wanted me to order his lunch and dinner. He wanted chicken tenders for lunch and a broiled chicken sandwich with a side of spaghetti for dinner. He wasnít allowed both because they were both entrees. I explained he only wanted a side of the spaghetti. Nope! I asked him what he wanted to do. He decided on the sandwich. I finished the order just as our nurse walked into the room. I was explaining to him that he was having chicken for lunch and dinner. Of course, with his memory problems he probably wouldnít remember his lunch by the time his dinner was there. So, there was a positive side to the memory problem! J

The one thing I didnít have with us in the hospital was a pen or pencil. Trying to order Rickís meals was difficult. I would have to repeat each item several times before they got it. I have no idea how these orders are being taken. They would ask the room number several times. Last, I had to give a time that Rick wanted the meal. It would have been so much easier with a pen. I ran down the hallway to see if I could find someone to get me a pen. The wing we were in was mostly deserted. The nursesí station was in the other wing located on the other side of the glass doors. We were closer to the opposite end of the wing. I saw a Fellow standing at the empty counter (this looked like it had been a nursesí station at one time) about to make a phone call. I ran up to him and asked if he had a pen I could use. He took his pen out of his pocket and handed it to me saying, "I need it back for work." What doctor only carries one pen with him?! He then made his phone call. I began writing down Rickís selections on the paper towel I was holding. The Fellow and I were facing each other on opposites sides of the counter. When I looked up, I was surrounded by all the Fellows and Rickís oncologist. Apparently, this is where they go to discuss each patient after they leave the patientís room. How would I have known that? I apologized and said, "Iíll write quickly." The doctor waited. I finished Rickís order, handed the pen back to the Fellow, and ran back to Rickís room. I remember being barefoot; I just donít remember if I was still in my pajamas. And, when it was all over, I still didnít have a pen!

Enough stories for one night. Rick is on his second nap. He is completely exhausted. I think that we get to sleep in tomorrow! J

Thanks for all the new letters in the guest book. I have read them to Rick. I am hoping that eventually he has the strength to sit at the computer and read through his mail. Our lives have been touched by all the encouragement you have given us.

Until tomorrowÖÖ.

Love,

Nance

September 14, 2006, Thursday

Dear Friends,

I have no idea where I left off with my last update. I think I wrote one while I was waiting for Marian in Admissions at Hahnemann to call with Rickís room number.

Most important news: Rick was discharged late yesterday. They think it was the prograf levels causing the problems. They were concerned about something Ė we couldnít quite understand Ė that had weakened in his heart. He was told to see a cardiologist ASAP. I called his cardiologist at 9:30AM this morning. They must have had a cancellation. They gave me a 10:30AM appointment. Good news again- the doctor did an EKG and some other test. Rickís heart is fine! We see his oncologist tomorrow morning.

I was so surprised to read all the new letters in the guest book. They keep our spirits soaring. I had thought most of our journey was over. However, I think we have only traveled a short distance. Apparently, there is a very long road ahead of us. I say, "Buckle your seat belts and hold on for the ride of your life! Weíre going to make sure this is a fun ride!" The only problem involved will be the laugh lines on your face. We all know how I feel about surgery or anything involving needles. My lines will just have to keep getting deeper.

Rick was admitted to Hahnemann late Sunday afternoon. The original call had him arriving at 3:00. She gave me the room number and BED 1. I am already upset. That means it is not a private room and I may not be permitted to stay. Then, a brilliant idea popped into my head. Rick just had a bone marrow transplant. He canít be in a room with someone else. I immediately called back and talked to Marian. She runs admissions; we have gotten to know each other too well! She got him a room in isolation. I packed my bag!!! J

Tiff came to pick us up. She was shocked at all the bags I had packed. Packing had been tough. I havenít completely unpacked from Baltimore. I needed heating pads, Rickís little radio, our CD players, my Rosary, my pillow, and FOOD. There are never extra pillows at Hahnemann. We also checked in late in the afternoon Ė too late for dinner. Tiff asked, ĎWhere do you think you are going, Hotel Hahnemann?"

Guess what? Hahnemann now has Room Service. You receive a menu; call with your order, and tell them when you want your meal delivered. The nurse was admitting him and telling us about the new room service. However, they close at 7:00PM and it was 6:55. I had to hurry. I got his order and grabbed the phone. It wasnít connected to anything. (This is reminding me of trying to use the phone in his room when he was admitted to Hopkins Ė but I digress) Our nurse told me to run to the next room and call from there. I flew.

I was connected to a gentleman in the food service department. His first question was, "Room number?" I told him, "1552." He said, "Would you please call back from that room." I explained the problem. He finally agreed to take the order. However, it was too late to order hot food. Big problem Ė Rick canít have lunchmeat or many fruits. I ordered the fruit platter with cottage cheese. I was hoping for cantaloupe and other fruits he can eat. I would eat the cottage cheese. I remembered going over the dessert list. He had settled on Lemon meringue pie. Keep in mind, this is all from memory and I am in a dark room. I ordered chocolate cake and ice cream. The nurse yelled from Rickís room, "He wants the lemon meringue pie!" I fixed the mistake. However, the guy said he was going to send all the desserts. He felt sorry that Rick couldnít order any dinner. He told me it would be right up.

Dinner arrived. The cottage cheese was missing. But, there was cantaloupe for Rick. The chocolate cake and ice cream were there, but no pie. It was a good thing that I had packed peanut butter and jelly sandwiches and bottles of juice that donít need to be refrigerated.

The nurse had told me that I could stay in the room with him. She said that I could use the recliner from the next room that was not occupied. This was the first disaster during our stay. Our trips are always an adventure. I had told Rick I didnít think the chair was going to fit between the end of his bed and the wall. I had to get it to the other side of the room. It wasnít easy, but I was able to get it out of the first room. Rick was lying in bed. The hospital tray with his dinner was over his lap. I tried to push the recliner between the bed and the wall. Weíre talking several inches too wide! It was now wedged rather tightly between the bed and the wall. I thought maybe I could raise the bed and it might squeeze past. I began raising the bed. All of a sudden I realized Rick was being pinned between the tray and the bed. I threw myself on top of him to reach the handle on the end of the tray and started turning it to raise it. Bottom line, that idea didnít work. I jumped across Rick in bed and looked at the situation. I had already banged two large dents in the screen panels on the wall at the head of his bed. I unlocked the wheels on Rickís bed. I pushed the bottom end of his bed as far as I could toward the inside wall. Nope, no luck with that idea. Next, I pulled the bottom of his bed as far as I could toward the outside wall. I jumped over Rick in the bed and pushed the chair with all my strength. Victory! Rick was just laughing too hard to say anything. I moved his bed back into place and locked it. We were good to go.

This is just the first of many funny stories during our stay at Hotel Hahnemann. Wait until you hear how I had to get into the chair every night. Or, how I ended up in the middle of all the Fellows during their conference with Rickís oncologist Ė no, they were not in our room when it happened! There was also the time I refused to wait for transport and took Rick back to his room myself. That caused a small uproar. It was quite the stay. Window blinds that wouldnít close, curtains that wouldnít close, electrical gadgets that would move without being touched, the 4:00AM disaster, the fire alarm with the announcement over the hospital speakers "Problem on the 16th floor North Tower. Code Red." This was the evening of September 11th. We were on the 15th floor North Tower. Itís a long list!

I really must end. We left for the doctor this morning at 10:00AM and arrived home about 3:30PM. We hadnít even had breakfast yet! And, I thought the funny escapades were over. We are right smack dab in the middle of them again. Wherever we go crazy things just seem to happen. Who would think you would be laughing so hard in the middle of a bone marrow transplant and serious setbacks? Rick seems to think that I create havoc anywhere I go. He means that in the nicest way! J I tend to think of life as a fun adventure.

I am still feeling much better. I am still having all the tests done. Hopefully, I will soon be told that I am fine. I really donít have time for being ill. I return to work on Tuesday. While Rick slept in the hospital, I brushed up on my Spanish.

Until tomorrowÖÖ

Love,

Nance

Thurs. Sept. 14 (Tiff update)

Well, Pop is out of the hospital.  The Drs saw some weakening of the heart muscle around the heart (more then it was when they ran tests last Jan.) so right now he is at the cardiologists having some special tests done.  My Mom will try to write a short update tonight.  Thanks for all of the emails from everyone!!

 

Wed. Sept. 13 (Tiff update)

Hi everyone. Sorry it has taken my so long to post this update. My computer crashes about once every 1.5 minutes and I spent a big part of the day yesterday at the vet with my cat, who was unfortunately diagnosed with diabetes :(  I really don't have any news on Pop.  The MRI came back and the neurologist does not think that Pop had a min-stroke. Yesterday they did an MRA (kind of like an MRI of the heart.)  Still waiting on that test back. They have done tons of blood work.  They have backed him off of the Prograff (one of his meds). His speech is still very slurred and they have him in these special boots that kind of compress on his feet to try to help the swelling of his feet.  I am hoping they release him today.  I will try and post a new update as soon as a hear something (which might be easier said then done :)

 

 

Sept. 10th...Pop admitted to Hahnemann Hospital today

 

Sunday September 10, 2006

Dear Friends,

I guess Rick is just going to keep things exciting for us. I am waiting for Admissions to call. The doctor wants him admitted to Hahnemann today. She is mostly concerned about the slurred speech. We were supposed to be there at 4:00PM. They had a room ready then. While I was packing his things, I realized that he needed to be in a private room. Otherwise, he canít take off his mask. I called Admissions immediately. She is working on it. We have to wait until we hear back from her.

This morning I watched Rick get out of bed. All of a sudden he fell over face first. From his waist up, he was in the hallway. The rest of his body was still in the bedroom. I jumped out of bed and over his body so I could see his face. I thought he had passed out. He told me he had been trying to put his jeans on and lost his balance. Since he canít use his right arm, he had no way to break his fall. There were no cuts or bruises. I checked his pupils for a concussion.

Around noon we finally convinced him to let me call the doctor about his swollen feet and speech. Thanks, Rene for the suggestion! He was willing to listen to you! J So, here we are again.

I have everything packed for both of us. I am hoping that they allow me to stay with him. He has difficulty eating because of his hand tremors and the pain in his right arm. He also has trouble getting dressed.

I told him we have to work something out for when I go back to work. He will have to call me when he wakes up. Then, he will have to call me when he is dressed. I will ask Tiffany to check on any type of home health care we might be able to get. I am very worried about leaving him alone. However, financial reasons dictate going back to work.

Ellie starts pre-school tomorrow. Tiffany is the room mother. Ellie needs to get some type of a normal life back. She had to spend most of the summer in isolation. Fortunately, she didnít understand much of it. We are hoping that she makes some friends at Holy Savior pre-school.

I will keep you posted on Rickís progress. My hope is that they release him tomorrow.

Until tomorrowÖÖÖÖÖ..

Love,

Nance

Saturday September 9, 2006

Dear Friends,

I know I said the next update would be Monday. Today has been one of those you must write about.

I was able to walk downtown (Collingswood) with the kids and grandchildren. I hadnít seen Alyssa in several weeks. The avenue was bustling. The second Saturday of the month is always busy with live entertainment. The restaurants and stores are packed. I havenít been downtown since last April.

I was touched when so many neighbors stopped me to ask about Rick. I was also surprised to hear that many of them have been following the updates.

We also ran into our good friends Jim and Cheryl Kay. It was a treat for me to visit. Rick and I havenít been out of the house except for doctor appointments. This evening was fun. I only wish Rick had been strong enough to go with us. He will probably be in a wheelchair for a while. He was even too tired for a ride.

Today we received a long letter from a woman we have never met. Her niece and nephew were students in Rickís class. Thankfully, Tiffany had our mail forwarded from Baltimore or we would not have received it. Rick and I were so amazed that someone would take the time to share her life with us and thank us for sharing ours with her. I will be sending her a letter very soon.

On several occasions I have worried about the updates. I have never gone back to read any of them. I have worried that maybe I have said too much. Sometimes, I thought I shouldnít be writing about me. I worried; but I couldnít stop writing. I still canít stop.

I am concerned about how Rick is feeling. Last night he began to slur his words. I had difficulty understanding him. I told him I though we should get him in the shower and then to bed. He agreed. When I was helping him get ready for his shower he told me not to worry; he was just exhausted. I asked him if he knew he was slurring his works. He said that he knew.

This morning Rick was having problems with his equilibrium. His speech was still difficult to understand. I told him I thought we should call the doctor at Hahnemann. He did not want to do that; he wanted to wait a while. He slept most of the day. We didnít call.

This evening we noticed that his feet are both swollen. This has never happened during the entire transplant procedure.

I will keep a close eye on him tonight. The one thing I have learned throughout this entire ordeal is that things go downhill extremely quickly. I may sleep with one eye open. I am glad that he already has his appointment with his oncologist on Monday.

I will go back to work on Tuesday. I had planned to be back on Monday. However, the doctor needed to have Rick come in early on Monday. They think he will need fluids again. I will be nervous leaving Rick at home. I do know that Tiffany is just down the street. Unfortunately, going back to work is a necessity not a choice.

I am slowly unpacking and trying to get the house back in order. I think I can get things settled soon. Rick just has to work with me here. That means he needs to stay out of the hospital! J

Until MondayÖÖÖ..

Love,

Nance

Friday September 8, 2006 

Dear Friends,

Is it possible? Have we really been home for a week? The house looks like we just moved in Ė boxes everywhere. One would think that things would be unpacked by now. I think we may be looking at next summer to unpack and get organized again! Until then we will just meander through the maze.

This has been a busy week. Rick saw his oncologist at Hahnemann yesterday. His counts looked good. She seemed to think he was doing okay. We had to go back this morning. They would have the rest of the lab work by then.

While we were waiting for our doctor, a Fellow came in to talk to us. She was quite excited about this new bone marrow transplant. She told us that they had performed seven of them at Hahnemann. It was really good news because they had all survived. Of course, I think they have all been within the last year. Seven just didnít sound like a large number of the procedures.

I took the opportunity to ask her about vaccines and live viruses. Our doctor came in while we were discussing the topic. She said we were a long way from that part of the procedure. The bottom line was that the Fellow really didnít know the dangers of giving someone over fifty a live virus vaccine. So far, no one has been able to address my concern. I think the reason may be that they have never before encountered this problem. Bone Marrow transplant patients were always under fifty.

I had to see the nurse at Hahnemann this morning. I needed blood work and I can only have one of the nurses at Hahnemann to it. Rickís doctor had let the nurse know it was fine to do that for me. She also told us to get the rest of Rickís lab work. All the results were not there when we left yesterday.

I was in and out in no time. We were waiting for Rickís things. I finally said to the one nurse, "Donít worry about his labs; weíll be back on Monday." She said, "Donít leave. The doctor needs to see him." At that point I could tell from her voice and demeanor that something was wrong.

The doctor was already talking with Rick in the waiting room. There was a reason his doctor wanted him back this morning. He needed fluids and his meds needed to be adjusted immediately. We left at 9:30 this morning and arrived home around 1:00. They had to change his Monday appointment to an earlier time. He will probably need fluids again. We were also given the name of the doctor on call this weekend. We are hoping for a quiet, uneventful evening.

I felt sorry for the nurse. She had to squeeze Rick in between two of her chemo patients. She saw me covering Rick with my sweatshirt. She told him she would get him a blanket. I told her that I would get it for him. Then she said that they were out of them and she would have to go over to the hospital floor. I said, "Iíll go get them. I know where they keep them." She didnít think they would let me have them. She was just too busy to argue. Rick has been in the hospital so many times, the nurses on the 15th floor all know me. I just walked past them and said hi. I went to the closet and grabbed an armful of blankets. Cathy was shocked when I returned with all the blankets. I covered Rick and this sweet older lady who was in the next chair. I took the other blankets over to Cathy on the other side of the room. No one there needed one. She said she had to cover Miss ?. I donít remember her name. I told her not to worry I had already taken care of her. The doctors and nurses in Dr. Brodskyís office are wonderful. I would do anything to help them when possible.

Rick has had the hiccups two evenings in a row. He started Wednesday at 5:00PM and stopped at 3:00AM. Last night he started at 4:30PM and stopped at 2:30AM. It sounds silly, but they have exhausted him. I should have asked the doctor, but with everything else that was happening I forgot. I am hoping he doesnít get them tonight. If anyone has any ideas for a cure, please let us know.

We tried everything Ė sugar, drinking water, drinking through a strawÖ. Nothing stopped them. Finally, I looked it up on the computer. I printed out two pages of home cures. I had him do every one that was physically possible for him. I tried massaging his feet, his arms and hands, and his ear lobes. The next one suggested holding your tongue and pulling it really hard. Keep in mind that he doesnít know I am reading these things on the computer. I know his hands have cream all over them. I grab a washcloth, run into the bedroom and say, "Grab your tongue with this wash cloth and pull really hard." That was when I had to tell him where I was getting my ideas.

Rick is completely exhausted. He sometimes sleeps four to six hours during the day. He has difficulty sleeping at night because of his torn rotator cuff.

The nurse told him today that the first three months are the worst. Today is day 63 since his transplant.

His appointments at Hahnemann will be Monday and Thursday afternoons. We are not sure how long he will be going twice a week. We return to Hopkins on September 28.

I will return to work on Tuesday. I had planned to be there Monday. However, his appointment on Monday had to be moved to an earlier time. Normally his appointments will be scheduled after my workday.

My family doctor wanted me to take the month of September off to recuperate. I told her I couldnít do that. I had an appointment Tuesday night with the gastro-intestinal specialist. He ordered a zillion tests. I asked him about returning to work on Monday. His comment was, "You can go to work and if you can make it through the day, you can stay." I could live with that. I know he figured I wouldnít be able to get to work; I couldnít even stand up straight. I have been in pain since last April. He wrote a prescription for a painkiller. Itís Tylenol with something else Ė not codeine. All I know is that I took one pill on Tuesday night and woke up Wednesday morning with NO pain. It was frightening. I didnít take another pill until Thursday morning. I may have to take one tonight. The dosage is one to two pills every four to six hours. I feel like I have my life back. I am very weak, thin, and tired, but without pain!!!!!!!!!!

Last night, I told Rick that I feel guilty because the pain is gone. I know how much pain he has. I know that is crazy, but it was just how I felt.

I will keep you posted on Rickís progress. We still have a long road ahead of us. I will write after his appointments. If there are any bumps in the road, I will write or Tiffany will let you know. I do promise that we really will get the pictures on the web. Rick is too weak to be on the computer. Tiffany still hasnít found some cable that she needs for her computer. I donít have a clue about what to do with any of it.

Please sign the guest book whenever possible. Rick really enjoys listening to the letters. He is looking forward to the time when he can finally talk to friends and see people.

Until MondayÖÖ..

Love,

Nance

Sunday September 3, 2006

Dear, dear friends,

My deepest apologies for having left you wondering how Rick made the transition to home. I had written an update. Unfortunately, computer technical difficulties prohibited Tiffany from posting it. Hopefully, we are now up and running. I really promise we will get all the pictures on the web site soon!

Rick is glad to be home. He is very tired. He is dealing with bouts of nausea. The pain in his right arm at times seems to be worse. He thinks it may be connected to the V-fend he has to take again. Mostly, he keeps saying, "Itís great to be alive!"

In some ways, being home is presenting problems we hadnít considered. Last night, Rick felt so sick he thought we were going to have to go back to Hopkins. I told him at breakfast that I am keeping all the meds packed in the same bag we used in Baltimore. I am staying prepared for an emergency trip. I figure as long as we are ready, we wonít have to go! J

I think we feel more isolated here than we did in Baltimore. Tiffany and Ellie were with us all the time. We saw our nurses almost every day. Now we are alone. Itís a good thing we enjoy each otherís company!

I believe we were as unprepared for our return home as we were for the trip to Baltimore. We had made plans to have visitors in Baltimore. That was never possible. We couldnít wait to get home to see everyone. That is not possible yet for several reasons. Mostly, Rick is still not strong enough for the company. I had been thinking about a big party when we got home. I thought we would get to see everyone.

I am hoping to feel better very soon. On Tuesday I will see the specialist. However, now is the perfect time to try on my wedding gown. The only thing that has prevented me is the pain I am having. I know the doctor wants me to gain weight; but I am still ten pounds heavier than I was the night we were married. So, I am determined that I will try on my gown soon! I do believe Rick could use a fun surprise. I think I shall plan on putting it on while he is sleeping. Then, I shall wake him up dressed in my gown. Iíll let you know how it goes. I need to lighten things up around here.

I shall be back. I have a third load of laundry to do. Most of our clothes are at least folded and on the bed in the spare room. I just have to put them away.

Five loads of laundry laterÖÖ The sheets have been changed. I think I have found most of our clothing. Everything is folded neatly in piles on the bed in the spare room. The clothes will have to stay there until tomorrow. Rick has been sleeping most of the day. I donít want to disturb him.

I have a question for any medical people out there. Rick will have to receive all of his immunizations again. It wonít be for a while yet; some, I think, wonít be given for about two years. I donít understand how he will be given live virus vaccines at close to sixty (that will be his age when they will start). The new flu vaccine given in a nasal spray canít be given to babies or anyone over fifty. The reason given is that it is a live vaccine. When they came up with the chicken pox vaccine; I checked it out. It was not recommended for anyone over fifty because it was a live virus. How will these vaccines be safe for Rick? Any answers?

Tiff and I were discussing the question. She said that they have been doing transplants for a long time. They know what they are doing. Then, I remembered that this is still a Phase II trial. Rick is ineligible for a regular transplant due to his age. Therefore, I am guessing they donít have any statistics on the dangers involved with the vaccines. This is where I feel like Rick is a guinea pig used for testing.

This evening we sat on the swing on the back porch. It was the first time either of us had been out of the house. Someone was bar-b-cueing. We heard kids playing. The leaves on the trees were being kissed by a gentle breeze. Rick turned to me and whispered, "Iím happy." I replied the same. He commented we may be tired and still in pain, but we are happy.

Things will return to a new normal eventually. How could anyone not be happy with all the blessings we have. Tiffany always seemed so amazed at how much we loves each other and how happy we were. Marry your best friend and always treat him or her like your best friend. Mix in two loving children and shake with a handful of grandchildren, add a generous number of in-laws (or, as my mother always said "in-love") and extended family and friends and life is wonderful.

I will keep you posted on Rickís recovery. We will see his oncologist on Friday. I am not sure how often he will have to schedule appointments. It will be a few weeks for the bone marrow biopsy report is back. I may have already told you that Audra cautioned us not to be discouraged if they still see leukemia. CLL takes the longest to see results. I think it takes longer to get the results on the FISH test. He will also be seeing an orthopedic specialist as soon as possible. Eventually, they will want to check his hearing and eyesight. These things seem minor after the transplant. We made it through the toughest part. We can still find humor in the silly things and still laugh.

Ellie has affectionally named her Poppy "Sweet Cheeks." I am not taking this personally but my nickname is now "Crazy Meemie." Thatís what I get for trying to have fun!

Tiffany has kept everyoneís address for us. I promise that you will be hearing from us (real mail!) soon. I just need a little time to recuperate. We want to thank people personally for their help and support.

Please continue to sign the guest book. This has become a true source of joy for both of us.

I promise an update on Friday. I will let you know what our local oncologist has to say.

Until FridayÖÖÖÖ..

Love,

Nance

Thursday August 31, 2006

Dear Friends,

Thereís no place like home; thereís no place like home. It worked without the ruby red shoes. Ding, dong the witch is dead!

I am writing from cloudy Collingswood, New Jersey; itís beautiful! We thought this day would never come. We left here in mid-June and arrived home to see the changing colors of some of the leaves.

It doesnít seem possible that we have been gone for the entire summer. We didnít see her arriving and we wonít see her depart. Our shorts and bathing suits will remain packed away until next summer. This was the first time in my entire life that I didnít want summer to arrive. Some day in the distant future, we will read these updates and find our lost summer. Until that time, she remains best locked away in the pockets of our memories we choose to ignore.

Rick and I attended our classes at Hopkins this morning. Rick announced to me at breakfast, "I just want to get through the classes and go home." I promised to stay quiet. I thought I did a good job. There were many times I wanted to say something, but instead I looked at my watch. I also took notes, even though the nurse said that wasnít necessary. I found it interesting that my notes from the first class did not agree with the notes from the second class. Iím just pointing out the discrepancies in the two classes. I found it just a tad disconcerting considering the importance of the information.

Audra has placed Rick back on his V-fend. She saw a small node in the CT scan. It wasnít there in his last scan. This is a precaution. We were told to make sure our local oncologist checks his levels for the prograf that he takes. She didnít seem overly concerned.

There were hugs from all the IPOP people. Over the course of several months, you become very attached to many of the people. We really will miss them. When we return at the end of September, we will run up to IPOP and say hi to everyone.

Jason arrived at the apartment about noon. We had just gotten home from Hopkins. It took us until 3:00PM to get on the road. I canít imagine why it took us so long. We really thought we had almost everything packed and ready to go. I donít think we calculated all the trips from the ninth floor to the first floor with only one luggage rack to handle the move. The largest item was Rickís recliner. The heaviest items were the coolers. I heard Tiffany remark to Jason, "I knew I shouldnít have left them alone. This is because of one trip to the grocery store!" Guilty as charged.

Yesterday, Rick had the Hickman line removed. I was as happy as he was. He could get a bath without Saran wrap. I was all set to run the bath water when I remembered the bone marrow biopsy. I forgot to ask if the site could get wet. I wasnít taking any chances at this point. They had also emphasized the importance of daily showers or baths. Poor Rick had to stand in the bathroom while I washed him. This way he was clean and the site wasnít touched.

I laughed when I jumped into bed last night. I looked around the bed. I counted seven pillows, two CD players, one small radio with a headset, one Rosary, and the remote control. We also had a sheet and three blankets. One might wonder how we ever slept around all the paraphernalia. I can remember several occasions on which I arose from bed and had to twirl several times before I was disentangled from cords.

I promise to still keep you posted on Rickís health. We have a long way to go. Rick asked the one nurse today, "Is there a time when I can stop worrying?" She answered, "Iím sorry, but no." We will spend years watching for graft vs. host disease. She has seen serious graft vs. host disease develop ten years after transplant. Any sunburn could possibly be fatal. It was so nice ending our stay on a happy note. For now, he is focused on getting through a holiday weekend without any health concerns.

We are going to bed early tonight. I figure if I unpack one bag a day, we might be settled in by Thanksgiving! J I have his meds; he has our CD players. We have each other. Life is good!

Last night, Rick whispered in my ear, "I guess youíre stuck with me for a long time." I canít believe that it has taken us so long to admit how scared we have both been.

Many years ago, I wrote the following quote from Robert Browning in my journal. My journals are filled with love letters to Rick and Tiffany and Jason. After my mother died, I found her last letter with words to my father and us. The exact same quote was written to my father.

Grow old along with me! The best is yet to be, the last of life, for which the first was made. Our times are in his hand who saith, 'A whole I planned, youth shows but half; Trust God: See all, nor be afraid!'

They shared almost fifty years together. There were so many similarities between my mother and me; Iím not sure why this one surprised me.

Until tomorrowÖÖ

Love,

Nance

 

Wednesday August 30, 2006

 

Dear Friends,

 

Itís over.  It was a long, anxious day for Rick.  He had three procedures done in three hours.

 

Our first stop was IPOP.  He wanted to have his labs done before they removed the Hickman.  That would be one less time they had to stick him today. After the labs, the nurse handed us a paper and told us to go directly to the second floor for the CT scan.  It was already 8:30AM.  We had a 9:00 appointment for the Hickman removal.

 

We reported to the office for the CT scan.  After two and one half months at Hopkins, she needs a referral!  We hadnít encountered this request since the beginning of this ordeal.  Fortunately, I carry a little notebook with every important thing I think we might need.  The number was in my little red book.  Then, when she heard that he had a 9:00 appointment, she said we had better go there first.  We would be a while in her office.  Last time we were there, we sat for over two hours waiting!

 

The Hickman line was removed in the recovery room.  The Physicianís Assistant who removed it allowed me to stay with him.  I saw him wince and his arm really jumped when she gave him the Novocain.  Later, he tried to tell me it really didnít hurt that much.  I didnít believe him.  She told him when she was about to do it.  She said, ďNow you are going to feel a little bee sting.Ē  When everything was done, she actually said, ďIíve never been stung by a bee.Ē  Then, how do you make that comparison?  One procedure completed.  Oh, I almost forgot.  The nurse asked him if he had had anything to eat or drink this morning.  We had eaten breakfast.  In fact, he had more to eat this morning than he usually does.  He calmly answered, ďNo.Ē  I just looked away.  They werenít going to sedate him, so I didnít know why it mattered.  Yesterday, Audra had told him he could take his meds this morning and eat.

 

While we were in the Meyer Building, we went to pick up his MRI films.  That was the easy thing today.  He will need these when he finally sees an orthopedic specialist.

 

With films in hand, we traveled back to the Weinberg building for the CT scan.  That wasnít too bad.  He still had to drink two cups of that terrible tasting liquid.  We were there about an hour.

 

We reported back to IPOP for the bone marrow biopsy.  Audra was going to do the biopsy.  There is always some trepidation with this procedure, especially with a new person.  When we walked into the room, she said that one of the Fellows had requested to do the biopsy.  This was already not going well.  Before we could say anything, she said that she would be standing right next to her.  When it was over, Rick said she was very good.  Audra made sure that he was comfortable.  It was just good to be done.  We were both happy when she told them she wanted a FISH test also done.  It will take about two weeks for the results.

 

The FISH test is the one that our doctor at Fox Chase refused to do.  Dr. Flinn, our original doctor at Hopkins, ordered the test.  The results indicated that Rickís CLL was aggressive.  When we approached Dr. Millenson at Fox Chase with the test results, he dismissed them.  This is now a standard test when a patient is diagnosed with CLL.  It helps to determine when to begin treatment.

 

Rick is sleeping now.  It was a very long day.  He is so happy that all the procedures are over.  The only pain he still has is the torn rotator cuff.

 

Tomorrow, we have two classes.  I am trying to decide whether to bother annoying the graft vs. host nurse conducting that class.  I have felt like they have treated us like we were too dumb to be given information.  It took three visits for her to tell me that the rash on his scalp that worried me was only a birthmark.  Three weeks?  Is there a reason why he is developing a similar birthmark on the other side!?  Or, how about the rash down his spine that I have been showing them since the beginning?  The last day she wants to show me what to look for with the rash?  You have been telling me it is NOT graft vs. host!  Then one of his homework questions, on the form he had to complete, asked if cream helped to alleviate the itching if he had a rash.  The doctor told me not to put any cream on the rash!!!  Make up your minds.

 

What I say will most likely be based on her attitude.  Also, time will play a big part.  I just want to get out of there.  She has already told us we donít have to remember anything; itís all on a card.  Then, give me the card and let us go!  I can read.  From our experiences with their teaching techniques, the card will be a much better source of information!

 

Jason is driving the van down tomorrow.  I think we will try to pack as much as we can tonight.  We want to go home now! 

 

Tiffany has been trying to feed us all the food in the refrigerator.  Last night I told Rick that we had to eat a half-gallon of rainbow sherbet.  And, he thought I was kidding; I wasnít.

 

This all feels so strange.  We came here expecting to live here for at least another week and possibly another month.  Nothing seems real yet.  It may take a while to adjust.  We are still waiting for some emergency that will keep us here.  Rick is also very concerned about being home on a holiday weekend.  He does seem to end up in the hospital on those weekends.  I clearly remember telling him not to even think about Labor Day!  I donít specifically remember Memorial Day, but I know he was admitted on Martin Luther King Day.

 

Barring anything unforeseen, tomorrow I will be writing from home sweet home Ė idyllic Collingswood!

 

Daddy, my update was all finished and ready for Tiffany.  She just called me over to read the guest book.  You really are reading the updates.  I know my grammar has been incorrect more than correct.  But, donít forget my disclaimer.  If I did a rough draft, editing, and then a good copy, I would have only had a short update.  It also would have involved quite a bit of work.  Thatís why I called it a journal.  On the other hand, many people may have been much happier with a one-page update! J  Instead, they had a trip inside my head and our family.  And, Rick will have a journal of the last several months.  I have never read any of the updates after I finished writing.  When the day comes that we are both ready to relive this summer, I hope we can recall the crazy times and the laughter.  We will both be surprised when we read them.  Thanks for signing the guest book.  We all got to laugh!

 

Until tomorrowÖÖÖ.

 

Love,

Nance

 

 

Tuesday August 29, 2006

 

Dear Friends,

 

It is so nice to sleep until you wake up on your own.  We are both very tired.  Rick is already taking his second nap today.

 

He dreads the nights most of all.  He still has a difficult time trying to sleep.  Mostly, it is the pain in his shoulder.  He thinks the physical therapy is helping.  He does his exercises faithfully.  Unfortunately, he still must take heavy doses of painkillers.  He canít wait until he sees an orthopedic specialist. 

 

We are slowly packing.  If all goes well, on Thursday they will release Rick into the care of his local oncologist.  It has been good news, but also alarming.  Rick told Audra he didnít think he was ready to leave.  She believes that he is.  We must return here the end of September for his first check-up.  We will see his local oncologist the end of next week.  We will find out what happens next when we see our local doctor.

 

Tomorrow Rick is scheduled for labs.  Then he will report to another building to have the Hickman line removed.  Hopefully, this time will be easier than the time he had it placed.  We ended up having to go to another building for the procedure.  Next, we head back to IPOP.  Audra will meet up there.  He is scheduled for a CT scan.  Audra will also do a bone marrow biopsy.  I think Rick will be exhausted by the end of the day.

 

On Thursday, we have several classes to attend.  I only remember that one is for the graft vs. host disease.  The one woman from the team teaches it.  Thursday will be a stressful day.  We should be used to them by now.

 

I do not think it is a good idea to wait until the last day a patient will be in the hospital for classes.  I think we are going to be taught all the signs for graft vs. host and what symptoms are serious enough to get to the hospital.  It will be like the first day we were here and had to attend classes on what to expect.  We should have been learning these things over the two months we have been here.

 

Please do not think that we are not laughing and having fun anymore.  Last night Tiffany was making dinner.  There is only a counter that separates the kitchen from the living room.  Rick was lying on the floor doing his exercises.  He has to use a cane for some of the exercises.  This particular one only called for him to lie on his back with a rolled-up towel running down his spine.  It stretched his shoulders back.  I was kneeling on the floor kissing his forehead and cheeks.  I asked, ďDoes this make it more difficult?Ē  From the kitchen I heard, ďIs she sitting on the cane, Pop?Ē  I said, ďNo!Ē  Next, she asks, ďIs she kissing you?Ē  I answered, ďYes.Ē  Itís difficult for Rick to talk when he is doing these exercises.  Finally, Tiff said to him, ďI guess thatís better than talking to you.Ē 

 

Our crazy antics and laughing until it hurts have not changed.  No one is able to take that away from this family.  We continue to find humor in most things.

 

Last night was the last time I will have to change the Perma Patch and the clips on the ends of the lines.  I finally have it down to about thirty minutes.  I only needed one patch this time.  It figures by the time I get this procedure down, I wonít have to do it again.  I said to Tiff this afternoon,  ďDo you realize this is the last night I have to wrap Poppy in saran wrap?Ē 

 

It will make bath time so much easier.  It takes so long to get that patch covered.  If the patch had gotten wet, I would have had to change it.  We all know that wouldnít have been good.  Bath time at home has been difficult for me.  Our tub is reversed.  Rick is sitting backwards for me.  His bad arm is farther away.  The first time we were home, I couldnít figure out what was wrong.  At least now I only have to worry about his arm.  The Hickman line will be gone!

 

Rick had homework today.  He has had several packets to complete for the graft vs. host team.  It is fairly long.  The questions are also not simple.  They do make us realize that our entire lives have been impacted by this illness and transplant.  Many of the questions ask if your regular activities have changed.  Iím not sure if any of them have not been changed.

 

The other night we sat and planned our TV shows for the week.  We rarely watched much TV a few years ago.  We were too busy.  We actually lived life instead of watching some actor portray a fictional life.  Our goal is to return to some of our activities.  Mostly, we would love to dance again.

 

It will be strange to leave this apartment.  For several months we have only left it to go to the hospital.  We are both feeling confused.  I am sure that will stop when we are home permanently.  Last weekend I woke up in the middle of the night and nothing looked familiar.  I was in my own home and didnít recognize my own bedroom.  That felt very weird!

 

Rick also wondered if we would see our doctor before we leave.  I would doubt it.  If Rick had not been admitted to the hospital with pneumonia, I donít think we would have ever met him.  I still find that odd!  If we had it all to do over again, we would have done things the same way.  Rick has done very well under the care he has received at Hopkins. 

 

It is almost bath time for Rick.  Tomorrow will be a long day for him.  I will let you know how he fares.

 

I will also keep you posted on how he is doing after we return home.  We still have a long road ahead of us.  The good thing is that we will be traveling to Philadelphia from our own home.  This is still a Phase II trial.  They are learning as they watch the patients.  I think we will have to return to Hopkins fairly often the first year.  Iíll know better on Thursday.

 

I thank all of you for the support you have given us.  I also appreciate all the encouragement you have given me.  It has helped all of us.

 

Until tomorrowÖÖ..

 

Love,

Nance

 

 

Monday August 28, 2006 

 

Dear Friends,

 

We are back in Baltimore.  The trip to Baltimore last night was very long.  We encountered traffic jams in several places.

 

Rick did not feel well during our stay at home.  He was feeling sick.  We were concerned about the trip back yesterday.  On Saturday he would have been too sick to travel.  Fortunately, he was feeling a little better yesterday.

 

His appointment in HIPOP went well today.  Audra is very happy with his counts.  She thinks he may have had an intestinal virus over the weekend.  On a positive note, it would be good news to know that his body was able to fight off a virus.  She also thinks the rash on his back may have been an allergic reaction.  She is changing his Bactrim to a different antibiotic.

 

He was the Graft vs. Host team this morning.  They are quite content with his progress.  The doctor shook his hand and said, ďAll I can say is good luck!Ē  I thought for a second and then asked, ďIs that good or bad?Ē  It was good!

 

Labs Results:           8/14       8/16        8/17         8/21         8/24

White cells              3190       2990        3260        3210        3560

Red cells                  3.30       3.05         3.19         3.33         3.26

Platelets                  130         125         139          119          125

ANC                        1750       2003        2021        2087        2100

 

Some people have asked for a list of normal counts:

                    Low Range     High Range

White Cells       4500             11,000

Red Cells          4.50             5.90

Platelets           150               350

ANC                 1500             7800

 

 

Friday, Saturday, and Sunday were very bad days for me.  I cried much of the time.  When I wasnít crying I was curled up in a ball on the couch with my imaginary pain, my imaginary weight loss, and my imaginary weakness.  I immersed myself in Emily Dickinson, Robert Browning, Elizabeth Barrett Browning, and Shakespeare.  When I am that depressed I canít even write in my personal journal.  I escape in my favorite poetry and writer.

 

I am not sure how I fell into such a depression so quickly.  My first response was fierce anger.  It has been a long summer.  I have spent the last seven months in severe pain.  Mostly, I have tried to ignore it.  Rick had to be my main concern.  There was really nothing I could do for myself until we were home.  I had thought I had been coping so well.  The letter was like the fatal blow to a person who has been holding onto a thread.  He severed that thin, weak, tiny little thread that was my lifeline.  I had nothing left to fight back.

 

He told my doctor there was nothing wrong with me.  He said I was just looking for a way to get out of work.  I work with teachers who are wonderful.  I am very attached to my students.  I cried when I had to miss graduation for the seniors I had this last year.  I cried again yesterday when I was talking to Jason.  I wanted so badly to write letters to several seniors.  The one really needed that letter of encouragement.  I was so sick and in so much pain I was unable to write.  The emotional pain for that student is still raw.  I do not take my job lightly.  Jason knew how important those students had been to me.

 

He also mentioned I had several phobias.  I have a needle phobia.  I have dealt with two years of chemo treatment, and several bone marrow biopsies (I stay in the room with Rick).  I flushed Hickman lines and administered IV antibiotics with syringes.  Typing the word is difficult, but I did it.  When my family doctor wanted me tested immediately for celiac sprue, I picked up Rick and went straight to the hospital.  His nurse at Hahnemann had done blood work for me earlier.  I had taken sedatives and applied numbing cream to my arm prior to the procedure.  This time, I had no time to do anything.  I had to have the labs done with nothing; I did it.  I was willing to do anything to find out what was wrong.  I had to be well to take care of Rick this summer.  It may be a real phobia, but I overcame it to get better for Rickís sake.  His assessment of me was totally unjust.  I read a line in Shakespeare this weekend that reminded me of Dr. Siemons, ďHe jests at scars that never felt a wound.Ē   

 

Tiffany tried all weekend to talk to me.  She reminded me that a dear friend had seen this doctor.  His sister had died under his care.  My friend and his daughter were both misdiagnosed under his care.  They saw another doctor and now know what was wrong.  They are both finally healthy.  They begged me to see another specialist.  I had a time problem.  We had to leave for Baltimore.  It would just have to wait until we returned.

 

Finally, I worked up the anger to write a letter to my family doctor addressing the comments in Siemonsí letter to her.  I addressed each lie.  We mailed it Sunday.  I had to reach deep, down inside to find the energy to defend myself.  It helped a little.

 

Today, while we waited in IPOP, I did a lot of soul searching.  I am still hurting inside.  Iím not sure what it will take to heal the emotional scars I feel.  I think until I see another doctor and I am told I have a medical problem, I will question my mental and emotional health.  However, I did not think it was fair to stop writing the updates.  Those of you who have been following our progress deserve more than a bitter end.  I just have difficulty telling funny stories when I am hurting so much inside.

 

I would like to share something with you.  Rick and I talked for a while on Saturday.  That may sound silly, but most of our time is spent quietly holding hands lying next to each other.  We have both been too sick to have serious discussions.  He told me he had been very scared this summer.  There were times he just didnít want to go on.  The kids and I kept him going.  He talked about wanting to see Ellie, Nicky, and Alyssa graduate from high school.  He wants them to remember him.  I said I want to dance at their weddings.  I have been just as scared.  I cannot imagine a life without Rick.  I have also been afraid that something would happen to me.  I have had no idea what is happening to my health.  Rick needs me.  We share an entire life of memories.  The letters, e-mails, and letters in the guest book have brought back so many fond memories.  Apparently, we have both done a great job hiding our worst fears from each other.  You think you love someone when you marry the person.  That love pales in comparison to the love that has grown over the years.

 

Please forgive me for the sadness that keeps me from my usual writing.  Day by day is how I will take this.  Maybe I will write my way out of this mess.

 

Until tomorrowÖÖ

 

Love,

Nance

Friday August 25, 2006

Dear Friends,

Sorry about the absence of updates. We left in such haste on Thursday that Tiffany forgot to post Wednesdayís update. She cannot post it until we set up the laptop. That may take a while.

We are home in Collingswood. Rick is not feeling very well. He is still itching all over his upper body from the rash. On Thursday, Audra told him to stop taking the Bactrim. She felt it could be an allergic reaction to it. He has been on it since January. He says he just feels generally lousy.

I have not been feeling very well. Today, Jason dropped off my medical records from the specialist I saw before we left for Baltimore. Basically, he said, in a letter to my primary care doctor, that I was a phobic, anxiety-ridden person who had nothing wrong with her. The letter gives a different diagnosis from the one I received in his office that day. I am very thankful that I asked to have Rick be with me when he talked to me. If I hadnít had Rick with me to confirm what I heard; I would really think I was crazy. At first I was angry. Now, I am beginning to second-guess myself. The pain is my fault. The weight loss is my fault. Itís all in my head. The depression this letter has caused me is just too much to handle right now. I had thought I had been coping very well. I guess not. I will cry in the shower and stay there until it stops. Rick doesnít need anything else added to his problems.

I will probably be asking Tiffany to write the rest of the updates. My heart is hurting too much to write. Maybe when I see the new specialist, he will find out if there is some medical problem, or maybe he will just read the letter and believe I have mental problems.

Thank you for all the support over the last few months.

Love,

Nance

 

Tuesday August 22, 2006

 

Dear Friends,

 

It is nice to have a day off from hospital appointments.  Rick has spent a large portion of the day sleeping.  He is still very tired.  Yesterday was a very long day for him at Hopkins.

 

Tiffany has spent almost this entire day trying to get our bills and hospital paperwork in order.  We are very fortunate.  I donít know how anyone could handle all of this and try to accomplish all the normal daily things.  Every day there are new hospital billing problems.  Every day she has several calls that must be made.

 

I as told that someone was not a very happy camper with my update yesterday.  I told someone that a defense case could have been made. So, I will do it for that someone.

 

Someone was quite in shock at the condition of the apartment.  She spent all morning cleaning and disinfecting everything.  We even had dust on the lampshades in our bedroom.  She had to call Ellie to help her.  She also had to drive us to the hospital and pick us up.  The key incident happened just before we needed a ride home.

 

She was also alarmed at all the food still in the refrigerator and freezer.  I do cook; I am just too weak to do much more than take care of us.  We are now eating healthy meals again.

 

About the dustÖnot that I would have dusted anyway, but I thought the air filter things kept the dust to a minimum.  Tiff said that she thinks they should be on high.  They are on low.  For those of you who follow these crazy updates you know that Rick hates them on at all.  Tiff and I would go right to high.  We have compromised on low.  She still has to keep an eye on him.

 

On the way to Baltimore, Rick mentioned to Tiff that she might want to move over one lane.  Well, we moved all the way over to the far right hand lane.  Rick just laughed and commented, ďShe is just like you.Ē  We always do everything to the extreme.  He really just wanted one lane. J

 

Jason and Nicky were here yesterday.  They all had a great time at Port Discovery.  They had dinner with us and headed home about 8:30PM.

 

We had another key accident last night.  Jason was sitting on the living room floor.  He tossed the car key up on the counter.  Unfortunately, it missed the container with all the keys.  It landed in the sink.  The key was already down the drain.  The alarm part was laying precariously on the opening.  Unless you grasped it just right, it would all be down the drain.  Itís a good thing he has super fine motor skills!J  I thought it was a great update story.  He disagreed.  Oops, his sister is in charge of publishing.  I donít think she will take this one out. J J

 

Yesterday, I tried to get the nurse in IPOP to change Rickís dressing.  It is always a nightmare for us.  I told her I thought it looked just a little red.  She said the site looked great.  Oh well.  I suggested that we change the Perma Patch, the clips on the end of the tubes, and have him take his bath before the kids came back.  I knew by then I would be way too tired and shaky to change the patch.

 

I find this amazing.  I changed the patch on the first try.  Finally, I am getting good at this part.  That would figure.  We were told that they would remove the Hickman before we leave Baltimore.  We will both be glad when it is out.  It makes it so difficult for him.  He doesnít want to attempt a shower.  It takes a while every night to cover it with saran wrap and tape it.  It is also an easy source of infection.

 

We had an amazing dinner tonight.  Itís like a restaurant.  You just order what you want, and it appears on the table.  We had three different dinners.  Everything was delicious!

 

Yesterday, when Jason, Nicky, Tiffany, and Ellie returned from Port Discovery, they were surprised to walk right into the luggage rack.  I wasnít sure where to put it.  I had just left it inside the front door.  There was enough room to open and close the door.  I said to Tiff, ďWhy donít we put it somewhere it wonít be in the way?  We could put it in the kitchen in front of the stove.Ē  ďRight, Mom.  You wouldnít think about using the stove!Ē  Actually, I wasnít thinking about cooking.  We were ordering take-out pizza.  How would I know that Tiff was going to bake cookies after we were finished dinner?  Now tell me, what is the point of take-out if you are still going to bake?  The cookies were really good!

 

Hopefully, tomorrow will be another quiet day for us.  Thatís because the days are never quiet for Tiffany.  She is busy living our lives for us.  We are too tired to live them ourselves! L

 

Until tomorrowÖÖ

 

Love,

Nance

 

 

Monday August 21, 2006    

 

Dear Friends,

 

This was a particularly long day at Hopkins.  We were in IPOP at 7:30AM.  Next, we rushed over to Physical Therapy at 8:00AM.  We were back in IPOP by 8:45.  His labs were already back.  Audra was there to see him.  She gave me the two prescriptions.  All the news was good.

 

Labs Results:         8/11         8/14     8/16  8/17         8/21

White cells           3590          3190     2990       3260        3210

Red cells              3.43           3.30      3.05        3.19         3.33

Platelets               112            130       125        139          119

ANC                     2350          1750     2003       2021        2087

 

Some people have asked for a list of normal counts:

                    Low Range     High Range

White Cells       4500             11,000

Red Cells          4.50             5.90

Platelets           150               350

ANC                 1500             7800

 

 

I rushed downstairs to the Pharmacy in the lobby.  There was no one in line.  I gave the girl the two prescriptions.  As always, she requested a phone number in case of a problem.  I gave her my cell number.  She said I only had a thirty-minute wait.  That is good for this pharmacy.  I rushed back to the 5th floor.

 

Rick was seated in the waiting room.  We were just waiting for the graft vs. host team.  Finally, about 10:15AM the team assistant passed us in the waiting room.  She apologized.  She had just taken someone else back.  By 11:00AM, I knew we had been forgotten.  I asked our nurse to please contact the team.  Meanwhile, Audra walked into IPOP. She asked, ďAre you STILL waiting?Ē  I just nodded that we were.  Our nurse came out and said we would be next.  They hadnít forgotten us.  The visits are short with the team.  I am sure they had seen several patients in the 2-Ĺ hours we waited!  I just like to be told the truth.  Fortunately, we really like the team.

 

Dr. Meade, the specialist, is not concerned about the rash on Rickís back.  Even if it was graft vs. host, it is too mild a case to biopsy.  That is encouraging.  It is not getting worse or spreading anymore.

 

We left the fifth floor.  I asked Rick to call Tiff to let her know we were ready for her to come and pick us up.  I went to the pharmacy.  PROBLEMS!  I donít even know how long I was there.  I had taken the bottles of pills that needed refills.  The prograf did have a refill on it.   However, upon checking the date more closely, I was concerned that it was too soon for a refill.  Audra wrote a new prescription for it.  The girl told me that it was too soon for a refill.  I told her I knew that.  That was why I had taken it to Audra first.  She would have to page Audra.  By now, I was angry.  I told her I had no time to wait.  I said, ďDo you mind telling me why you insist on asking for a contact phone number?  You had to know about the problem two hours ago.  I was sitting upstairs and Audra was right there.Ē  I pulled out the bottle of pills and showed her.  I said, ďI need six pills to get him through to Thursday when we return.  Can you just get me six pills?Ē  She talked to the pharmacist and I was given the six pills.  I wasnít waiting and I wasnít leaving without the six pills Ė security guards or no security guards!  Besides, the receptionist at the front desk and I have become very close.  We visit every day.  The guards hang out at the desk.  She would have told the guards, ďLet her alone!Ē

 

This next story you may or may not get to read.  Someone who is here taking care of us again already told me, ďFYI this is not for the update!Ē  So, I will mention no names.  If you remember, the trash chute is located right next to our front (and only) door.  Someone went to put some water bottles in the trash chute.  Someone accidentally dropped the key fob with the bottle.  We complain when people do not push their trash down the chute all the way.  This time it was good they hadnít.  There were bottles blocking the chute.  Someone was able to get someoneís hand down the chute and grab the key fob just before everything went down the chute.  I thought it was a funny story.  Hope you get to laugh with me.

 

I really hope you were able to read the last anecdote!  Rick always tells me the only difference between me and the rest of the world is Ė other people do crazy things too Ė they just donít tell everyone - - I, on the other hand, admit to the crazy things.

 

It was so nice to come back to a clean apartment.  All I had to do was eat some lunch and type.  Rick is taking a nap.  I am just enjoying the peace and quiet.

 

Tiffany has already changed my doctorís appointment.  I am so glad.  I am trying to figure out why I am suddenly getting worse again.  We have come up with a couple of theories.  My theory was that I am having problems dealing with living between Collingswood and Baltimore.  For a long time, I mentally shut down.  I was on autopilot.  I didnít think about home.  I didnít talk to family or friends.  Now, I just want to be home.

 

This is Tiffany and Maureenís theory.  Here is the way Tiff began last night, ďMom, you and Pop have been spending a lot of time together.Ē  I jumped in before she could continue.  ďYou think Iím driving him crazy?  Or, do you think we are tired of each other?Ē  I really should learn to let her finish.  She and Maureen think that I am starting to stress over separation anxiety.  I will have to go back to work and leave him. 

 

My guess is that it is some of both.  Also, I am just still sick from when I left work in May.  However, a bone marrow transplant takes precedent over a non-life threatening illness.  Truthfully, we would not have survived this ordeal if Tiffany hadnít stayed in Baltimore with us.  That is a third theory.  My health became worse right after we were here by ourselves.

 

Tiffany, Jason, Ellie, and Nicky are at Port Discovery.  The two little ones love the place.  They can stay from the time it opens until it closes.

 

Tomorrow, Tiffany and I hope to take Rick to the Baltimore zoo.  I asked Audra today if it was okay.  She saw not problems with it.  I will take the wheelchair for him.

 

Last night, Tiff walked into the apartment and asked why it had a strange odor.  I didnít know.  Maybe it was just from being closed for so long.  Tiff finally figured it out.  While she was here, she wiped everything down with bleach every day.  She sprayed all the doorknobs with Lysol.  I was happy we had meals, clean clothes, towels, and linens.  I know I was becoming weaker each day.  We did survive.

 

Today, I was waiting for the elevator to get back up to Rick on the 5th floor.  The bell rang to indicate elevator doors were opening.  You have to look up to see if the light over the door is white Ė going up, or red Ė going down.  The elevator happened to be behind me.  I spun around so quickly that I was dizzy.  I literally had to hold onto the railing inside the elevator to maintain standing.  An elderly gentleman stepped onto the elevator with me.  The doors closed.  I was still holding the railing with one hand, and holding my head with the other hand.  He asked, ďHow are we feeling today?Ē  I answered, ďA little dizzy.  How are you doing?Ē  He smiled and replied, ďIím learning to slow down,Ē and slowly stepped out on the second floor.

 

I know Rick still finds this hard to believe, but I used to live in a house where nothing was ever out of place.  This didnít come from my upbringing.  When the kids were little we used to spend every Sunday with my in-laws.  Nana, my mother-in-lawís mother, would always ask me if I had made the bed.  Why would I make the bed?  I was just going to get back in it that night.  She would laugh and ask, ďWhat would someone think if they broke into your house?Ē  I started making the bed, washing the dishes, and making sure the house was clean before we left.  I loved Nana; she was so Irish she still had the Irish accent.  I did think it was odd that I was cleaning the house for a burglar.

 

My grandmother always told me to let the cleaning go.  The kids would only be little for a short time; enjoy them while I could.  I was very fortunate.  I never had to work when the kids were little.  I was able to maintain the house and play with the kids too.  I will admit that my first priority has always been my family.

 

Last night, Tiff kept finding me wandering around the apartment or writing.  She kept telling me to go to bed.  I was trying.  I couldnít seem to quiet my nerves.  I finally climbed into bed.  I held onto my Rosary.  As usual, I made it through the entire Rosary.  I placed my headphones on and hit the button for my CD on stress.  This time I heard the entire CD.  Donít ask me what she said; I have no idea.  Nothing seemed to be able to pacify my desire to go home.  I am tired; I am just wired!

 

Sandi or Bonnie or Joann, if you are reading this, who is the character in one of Shakespeareís plays who wanders the castle.  I do miss my books.  Neither the play nor his name will come to me.  HELP. PLEASE

 

Okay, now I know I really need to stop.  Iíll be driving you all crazy with me.  I think I have already arrived.

 

Until tomorrowÖÖ..

 

Love,

Nance

 

 

Sunday August 20, 2006

 

Dear Friends,

 

We are back in Baltimore.  L  But, Tiffany and Ellie are with us.  J  Tomorrow, Jason is coming down with Nicky.  These two things will make the week bearable.

 

I am always surprised when I hear that someone is keeping up with these updates.  I am so glad that I let people know we were going home this weekend.  The phone rang shortly before we were leaving to return to Baltimore.  It was Jimmy Serock (Collingswood class of í66 with Rick).  He had read that we were home and thought he would check on Rick.  It is amazing how a phone call can lift his spirits.  He is looking forward to a personal visit as soon as he is home and ready for company. 

 

Both of us are exhausted from the weekend.  I am so happy that we are spending time at home.  Both of us are looking forward to being there permanently.

 

Tonight, I thought Rick was trying to drive me crazy.  I asked him when he wanted to get his bath.  He said he was ready then.  First, I flushed both the Hickman lines.  Next, I turned the water on in the bathtub.  He got up and walked into the living room.  I asked him what he was doing - his physical therapy exercises.  The tub was half filled, so I turned off the water.  A short while later I found him lying in the middle of the living room floor.  I knelt down and asked him if he had finished.  Yes.  Then he went into the bedroom and sat on the bed.  We had to discuss what time we needed to get up tomorrow.  Then he had to set both alarm clocks.  At that point it was only about 6:45PM.  When he was finally ready, I told him he would need to check the water temperature.  I still needed to add water, I just didnít know whether he wanted more hot or cold.  I heard him call me.  I ran into the bathroom.  He asked, ďDid you think there was water in the tub?Ē  It looked like I was trying to drive him crazy!  I hadnít secured the thing in the bottom of the tub; it was empty!  We both just laughed!

 

Tiffany did notice that I hadnít been keeping the apartment like she had.  I already knew that!  However, I would have made a quick run to the Whole Food store for dinner.  She created this delicious dinner with stuff in the freezer and cabinet.  Her meals amaze me.  We are so thankful to have her back with us.

 

Tomorrow, we see the graft vs. host team.  I am still concerned about the rash on Rickís back.  I think we need to mention what we read in the book about the rash.  We are always anxious about the labs.  He also has physical therapy tomorrow.  Mondays are usually long, stressful days.

 

Here is an example of how weak we both are.  Rick just wandered out of the bedroom and headed to the kitchen.  I jumped up (I am sitting on the floor with the keyboard in front of me.  The computer was facing the opposite side of the coffee table.  In order to sit on the couch, I would have to pick it up and turn it around Ė way too much effort!).  I went into the kitchen and asked him what he wanted.  He wasnít sure.  He needed something to eat with his evening pills.  He finally settled on a couple of Ritz crackers.  It was a new pack and he couldnít open it.  Next, I tried.  I thought we were going to have to get the scissors to open the pack of crackers.  Now, that is a sorry sight to behold!

 

Thanks for the encouragement and support.  I do not know where we would be without it! 

 

Until tomorrowÖÖ

 

Love,

Nance

 

Saturday August 19, 2006

Dear Friends,

I canít believe we have to return to Baltimore tomorrow. We have enjoyed these last few days at home. We even had a few visitors. Rick is amazed at how quickly he tires. He only sits and talks, but that seems to be all it takes to exhaust him. He is just very happy to see people again. He had missed his family and friends.

Tiffany and Ellie are returning to Baltimore with us tomorrow. I really did my best to clean everything as well as she had. However, taking care of Rick, writing, and packing were on the top of my priority list. Isnít it the daughter who is supposed to worry about what the mother thinks about her housekeeping skills? All I know is that she takes very good care of all of us.

Hopefully, Jason will be able to come down to Baltimore on Monday. I would love to see Nicky and Ellie get to the Discovery Museum one more time before we leave. Being separated from our kids and grandchildren has been quite difficult for all of us. Rick and I usually see the grandchildren at least several times a week and every weekend. In the summers, we spend almost every day together.

One of the hardest things for us has been not being able to see Alyssa. That usually means we donít get to see AJ either. Itís a shame we couldnít have made it one more year before the transplant! I am worried that Alyssa will become strange with us. It is especially hard on Rick. I can go over and visit her when we are home. I need to know how long it will be before we have our Saturday morning homemade Belgium waffles. There are so many things we miss.

At dinner Rick mentioned that Tiffany could drive tomorrow and I could rest. He said, "That will be a break for you." He wasnít trying to be clever. However, I said, "You mean it will be a break for you. You wonít have to ride with my driving." He just laughed.

Rickís mom came over this morning to visit. She brought some of the Rutherford ancestry. It dated back to the 1800ís when they came from Ireland. Rickís momís maiden name was Rutherford. This may not sound interesting until you understand why I am so interested in her ancestry. My ex-husbandís name is William Rutherford Walton III. Rutherford is a family name on his grandfatherís side. I am waiting to see if Rick and my ex-husband are related!

I asked my father a few weeks ago if he read the updates. He said, "Not very often." I told him that I had started them for the family to know how things were going in Baltimore. Well, he came to visit today. I tested him. I asked if he had known we were home Monday night so I could see Dr. Thurm on Tuesday. He replied that he had read it, but it was too confusing to make sense. My verb tenses changed in the paragraphs. Daddy, may I refer you back to the opening of the updates. Please read the third paragraph in my very first letter. I do believe there is a disclaimer for grammar. J My family is filled with writers. In fact, when my father writes a letter, one had better have his PhD, or a very good dictionary. Sorry, Daddy, I do know that this journal is filled with all sorts of errors. Itís just my thoughts and therapy. Besides, you are the one I blame for my need for therapy. I am certain that your brain and Momís brain crashed together in my head. Have you any idea how difficult it is to be structured creatively? Or, how difficult it is to be a responsible free-spirit? I am constantly fighting with myself! Rick never knows which side will win.

Jason brought our huge suitcase upstairs for me. Would you believe I never unpacked anything? Everything is right on the kitchen floor where we dropped it on Thursday. The sun was out. I was in a bathing suit and in the pool as soon as I knew Rick was settled. The only things Iíve taken out are the meds that we needed. The clothes will be staying here. The truth is that I am very exhausted. I have not felt well for a while. I will be glad to see the specialist the end of September. I donít have much energy left. They have to tell the little ones to be careful with Meemie. It doesnít take much for them to knock me over.

Barbara (Konrad), thanks for the vote of confidence. Itís funny what you remember from high school. I guess you have your own impression of how others saw you. I do remember how much fun we had in high school. I am still having fun, so maybe high school taught me how to have fun. I think that is a very good lesson to learn.

I have recently heard another lecture about taking care of myself. I have tried my best. I knew in May that I was very sick. I did see a specialist. Unfortunately, he dismissed my health concerns. I inquired about seeing a specialist at Hopkins. No, it would not be covered; Hopkins is not in my plan. I would have to wait until we came home. I have asked Jason to try to get me an earlier appointment with the doctor Tiff and he use. I am not sure how I can physically make it until September 25th. Jason has his follow-up appointment with the doctor this week. I am very glad I donít have to drive tomorrow! I will also be very thankful for the help from Tiffany.

Itís 8:30PM; we are ready for bed. I am afraid that tomorrow will be here too soon. I donít want to leave home.

Until tomorrowÖ..

Love,

Nance

Friday August 18, 2006

Dear Friends,

It is so wonderful to be home. I even was able to run to Vincent & Josephís to have my hair cut. Frank asked about Rick. I told him I didnít think he would need a haircut for a while. L

I do think they are trying to make me think I am crazy. This morning I backed out of the driveway. There was a PT Cruiser parked directly opposite the driveway. On one side of the driveway were trashcans. On the other side was a trashcan and fence posts. I only knocked over the one trashcan. I stopped the car and picked up our trash. I headed to the hairdressers. I had a perfect parking place. I wouldnít even have to parallel park. I just had to pull over to the curb. One might ask, how was it possible to hit the curb? I donít know. We will keep all these little secrets until Rick is completely better and ready to read the updates.

My headache was gone when I woke up this morning. Of course, I didnít pack my ice pack for migraines or my heating pad for the back of my neck. I havenít had a migraine for some time. However, I did remember to pack my dictionary. I missed it last weekend. I had thought about taking my Shakespeare reference books, gifts from my dear friend Sandi Kornbau-Mitchell. I was harassed enough when I wanted my dictionary.

I told Rick I would miss writing when we return home. Once I go back to work, there is so little time for anything. I will continue to write updates each time he sees the doctor. Although I hated having to stay up until 1:00AM when Rick was on the antibiotics, I enjoyed the quiet time to write. I wasnít able to get much sleep; but it was worth it. Now I donít have that excuse.

Everyone has gone home and the house is quiet. Rick is taking a nap while I finish writing. It was just a perfect day. Being at home for these long weekends are good for Rick. He is getting settled. This morning I made his appointment with his doctor at Hahnemann. He will see her the Monday after he is released from Hopkins. That makes him feel better.

Rick is still losing hair. I donít know why it just starts falling out. It stops for a while, then for no apparent reason, it starts again. He seems to be okay with it. I am guessing that it may all fall out eventually. He told me that he had read that hair loss can be a sign of graft vs. host. I donít know how I missed that in the book. There is just so much information to know. Considering most patients lose all their hair from the heavy doses of chemo and radiation, it seems to me to be a strange sign.

Itís almost 9:00PM. Rick is already in bed. I am going to join him. He is feeling extremely tired. He tried to explain how he is feeling. He feels pretty good and then all of a sudden he tires. It happens quickly. Once he tires, he doesnít feel very well either. He is an excellent patient. He constantly apologizes for complaining. I keep telling him he never complains. Believe me, he has every right; he just doesnít.

I know I say this almost every night, but it is important. We are so thankful for the cards, letters, e-mails, and letters in the guest book. This has been a difficult journey. I think we still have a long year ahead of us. I donít know what we would do without the encouragement, support, and laughter you shower us with! Thank you!!!!!

Until tomorrowÖÖ.

Love,

Nance

Thursday August 17, 2006

Dear Friends,

We are home in Collingswood again. I spent the later part of the afternoon floating in the pool! It was heaven. The water was 91 degrees. It was just perfect for me until the sun disappeared behind a cloud the size off Texas! Then I was cold!!!!! No comments.

Next week, we have the same arrangement. Rick is scheduled for his appointments on Monday and Thursday at 8:30AM. We will see the PT person at 8:00. I will try to get Rick to IPOP by 7:30AM so they can do his labs. Iím not sure how successful I will be with this plan.

This morning was like pulling teeth. I knew his appointment was at 8:30AM. However, we were up and ready. If he arrived early, they would probably just do the labs then. All we had to do was wait for the labs and we were headed home! No matter how hard I tried, I couldnít get him out of the door. We arrived at 8:20AM. It was almost 10:00 by the time the labs came back.

We had seen Audra. She had checked the rash on his back. All of his vitals had been done. I ran out to the front desk to see if Kim had completed the schedules. Usually, you get your schedule on Friday. She wouldnít have them until later in the day. I told her I would call her from HOME! After we had waited for some time, I thought our nurse might have forgotten us. We were back in a corner; they do forget you when you are not receiving any meds. I told Rick I was going to the ladiesí room. I thought I would pass our nurse and just ask about the labs. She saw me and told me that she was still waiting for the labs. Not forgotten.

I walked to the hallway where the rest rooms are located. The woman who cleans them was just entering the ladiesí room. She is very sweet. We talk all the time. However, I am on a mission Ė HOME ASAP. Detour Ė back to HIPOP. Yes, we were in HIPOP; but it was okay. Miss Brenda wasnít there. Geneva was there today.

On Monday, Miss BRENDA stomped into IPOP and announced, ĎDonít you be sendiní no people over to my side!" I was quite tempted to snap a quick picture of her. It would have been too obvious. She didnít look as big when she wasnít yelling at me. I am sure I could have taken her down!

I went right back to HIPOP when I couldnít use the ladiesí room. Good thing! The nurse was just handing Rick his lab results. Everything looked great. I just wanted her to place the copy in my hands so I could put it in our bag. HOME!!!!! Rick is still talking to her. I am at the door waiting.

We get to the elevators and I hear Rick yelling, "Kim." Fortunately, his scream is muffled through the mask. I love Kim, but I am on my way home. She didnít hear him. I had him on the elevator before he knew what was going on.

We were home quickly. I even stopped to buy him his paper.

This morning we lucked out because someone else was thoughtless. There was a luggage carrier in the hall where the elevator is located. I grabbed it and ran it back to our apartment. I could never get out without the carrier today. I had a lot packed. Many times I have had to get on the elevator and stop at every floor looking for one of the two carriers. Whenever I see one of them, I return them to the area at the parking spaces.

We walked into the apartment and I began throwing the things onto the carrier. I stopped long enough to make some lunch (brunch) for Rick. I just wanted to go home. Everything was ready to go. Rick had to stop and go over his mental list of everything we needed. Yes. Yes. Yes. I had everything! I even flushed his line the nurse hadnít flushed this morning. I wanted him to have tonight completely off. He wants to watch football.

Before I forget Ė labs

 

Labs Results:          8/9      8/11     8/14    8/16 8/18

White cells             5550     3590    3190   2990 3260

Red cells                3.62      3.43    3.30    3.05 3.19

Platelets                 121       112     130     125 139

ANC                       4070     2350    1750   2003 Pending

 

Some people have asked for a list of normal counts:

                    Low Range     High Range

White Cells       4500             11,000

Red Cells          4.50             5.90

Platelets           150               350

ANC                 1500             7800

In HIPOP today I did some reading about Graft vs. Host. The rash on his back is described perfectly in the book. I am not sure why they are not concerned about it. We spoke to Audra this morning when she was looking at it. She said it is still too insignificant; it must cover about 25% of his body. It starts between his shoulder blades. It runs down his spine. Now, it is spreading out to his hips. It itches and there is nothing we can do about it. They instructed us not to put anything on it. I think I was happier before I started reading. Ignorance is bliss. Unfortunately, in this case one may be sure it would not be blissful!

Rickís shoulder is still very painful. I try to get him to take the stronger painkillers in between the long acting ones. He hates to rely on pills. Today the nurse told him to take the stronger ones before the pain became bad. It is easier to stop the pain that way. She looked at me; I didnít say a word. I will only mention it if the pain gets worse.

Tiff called this morning to tell me she was turning on our air conditioners. I could try on all my clothes in comfort. If I were not so tired, I would be up in the attic getting my wedding gown right now. I am almost down to my weight when we were married. Maybe tomorrow.

Karen (Lacy) is leaving for Colorado soon. Tiffany read her letter in the guest book. When I arrived home, it was one of the first things she told me. Her question was so funny, "What are you going to do when your girlfriend goes on vacation?" Then she realized Karen had become my girlfriend instead of Popís. She said she pictured Karen as a teenager. I said that I did too. We are the class that never grew up. Yes, we work; we are responsible; we have raised families; we have cried when we have lost a member of our class; we have supported each other in the time of need; we have laughed together. At heart, we are still kids in 1967. Have a safe trip, Karen.

I am tired from a long day. I was able to drive all the way home this time. However, my head is throbbing. I think there was just too much excitement today. To be truthful, the excitement began when we realized that we would be coming home every weekend.

The drive home was uneventful. Rick admitted he preferred to read his paper than to watch me drive. We didnít even have to make any stops. The traffic was not bad. My last comment was on Route 42 in Jersey, just before our exit. A state trooper passed me. I said to Rick, "He must really be flying; Iím doing 80." Technically, I donít see this as speeding. I was in the middle of the pack. I had no idea how fast I was going until I noticed the trooper fly past me. Can you imagine the problems I would create if I tried to do 55 or 65. Iím not sure which is the speed limit there. Anyhow, it would create a mess!

Rick is watching his football game. I am guessing that he will get his bath at halftime. This is one of those times he really misses Jason. I would have watched with him if my head didnít hurt. I do try to fill in for the kids when I can. J

Now, I am going to lie down until Rick is ready for his bath.

 

Until tomorrowÖ..

Love,

Nance

Wednesday August 16, 2006

Dear Friends,

It is 7:00AM. I am just killing time until we leave for Hopkins. Rick is in bed lying on the heating pad. He woke up with a headache. We think it is from the exercises he was instructed to do. I am hoping he feels better soon. He is not allowed to take anything like Tylenol or Advil.

I canít believe that I will pack tonight to go back home tomorrow. This time I will actually be prepared. No throwing things in paper bags. This will be an organized trip. Nicky and Ellie are so excited. We will have a party to celebrate tomorrow. It will be the last day of camp for them and we are home for a long weekend.

Yesterday I was playing with the two of them. Nicky was on the floor crawling upside down. Iím not sure why, but it reminded me of a crab walk. I dropped to the floor and did the same thing. I told them, "Letís walk like crabs." You just lie on your back and get up on your hands and feet. Ellie was doing it. Suddenly, Nicky ran into the living room and squeezed himself between the train table and the couch. He was face down on the floor. He didnít want me to touch him. Tiff, Ellie, and I all kept asking him what was wrong. Was he hurt? Did something happen? Each question was simply greeted with his head shaking no. Finally, Aunt Tiffy asked, "Were you scared?" Success! But of what? Brilliant Aunt Tiffy, "Were you scared of the crab?" "Yes, the crab!" I said, "No more crabs, Nicky." With that he jumped up and began playing. This is a child who is rarely afraid of anything.

When Jason called last night, I told him what had happened. I started out with, "He did it first!" Jason asked, "Mom do you hear yourself? He did it first." Well, he did! Jason was glad that I had told him the story. Now if he wakes up in the middle of the night with nightmares about crabs, Jason will know why. Iím telling you it wasnít my fault.

We are home from Hopkins. Rickís headache is much better. The physical therapist said the headache might have come from the exercises. I will work on his neck tonight.

Here are the lab results:

 

Labs Results:          8/9      8/11     8/14    8/16

White cells             5550     3590    3190   2990

Red cells                3.62      3.43    3.30    3.05

Platelets                 121       112     130     125

ANC                       4070     2350    1750   2003

 

Some people have asked for a list of normal counts:

                    Low Range     High Range

White Cells       4500             11,000

Red Cells          4.50             5.90

Platelets           150               350

ANC                 1500             7800

 

His counts have dropped a little. Audra wants him to begin taking two prograf again at night. They are really tiny pills.

Physical therapy went well today. He is already seeing a little improvement. I told him it was really important for our dancing! How is he going to twirl me?

We are planning on taking a walk to the Inner Harbor. He just needs a little rest first. He will ride in the wheel chair. The weather is beautiful. Once we are a few blocks from the construction, if it isnít crowded, he may remove his mask.

Last night we stepped into the elevator with a dapper looking gentleman and his well-groomed schnauzer. I had noticed him ahead of us on our way back from Whole Foods. At first, I thought he was the man from the penthouse who is not very friendly. And, that is being kind. However, I had watched this man stop at the corner for a woman to pet his dog. As I passed them, I saw her reach into her handbag and say, "Let me show you a picture of my baby." No, this was not the guy from the penthouse. When the elevator door closed, I asked if his dog was friendly. He said, "Oh yes, very friendly." Before I could move the dog began with this low growl. He was staring at Rick. The gentleman apologized. The mask scared him. He also didnít like hats. I donít think Tiff and Ellie have met them yet.

More good news! Audra said that Rick would only have to go to IPOP on Monday and Thursday. Oh, that reminds me; I must check his physical therapy dates Ė not going on Friday!!!!!!!!!!!!!! She is giving us another long weekend at home.

Rick told me this morning he thinks the trips home have been good. He wants to get out of this apartment and move back home. That is a very good sign.

I really must get this apartment back in ship shape condition before Tiffany comes back. Instead of getting things done, I tend to end up on the couch with the keyboard.

Tyler (my ex-husbandís son who was diagnosed with ALL acute lymphatic leukemia in 1996) was always begging me for Tiffy and Jason stories. He loved hearing all the stories about his older brother and sister when they were little. He would curl up next to me and listen for as long as I would tell them. When he was diagnosed with ALL, he spent long periods of time in the hospital. We werenít allowed to visit. Bill got him a computer. I started writing stories to Tyler and Bill or Maureen would read them to him. I called Tyler "the keeper of the stories." I told him I would start at the beginning when his Daddy and I first met. We recorded everything through the births of his brother and sister, how they got their names, and any other stories I could recall. I had almost forgotten the book of stories.

This part I would skip if you have never seen the movie You Canít Take It With You, are not a member of the Collingswood class of "67, or have not seen the play. This was our Junior play. The movie starred a very young Jimmy Stewart and Spring Byington. It was in black and white. I auditioned for the romantic lead. I received the part of the ditsy mother. I just figured I wasnít cute enough for the romantic part. We have the movie at home. It is one of our favorites. Many times over the last twenty-five hears I have realized that I was the mother. She was always happy, no one ever knew what was going to happen in the house, and her one aspiration was to become a writer. She just never had any time to write. This is definitely an example of life imitating art! So many times I am reminded of the play when another crazy event occurs at home. Thanks, Irene Devereaux, for typecasting!

For example, Rick was only mildly surprised when I greeted him at the back door one day in my wedding gown. He was just coming home from work. I just had the urge to try it on and look at it again. It always seems so sad that the dress you love so much is only worn once. It was great fun. However, I had gained a few pounds. I was afraid that I might rip it if I tried to reach the zipper. So, I just waited for Rick to get home to help me. That reminds me, now would be a great time to try it on againÖmaybe this weekend!

One time, years ago, there had been a problem in the neighborhood. I cannot remember what it was. I know it was probably minor. An officer stopped at our house to ask some questions. He wanted to know if I remembered what day something had happened. Neither Rick nor I remembered. Then, I said, "Wait a minute." I ran upstairs. The officer asked, "Whatís she doing?" Rick said they would have to wait to see. I had remembered what I was wearing when I had spoken to the other officer. For years I had written down on a calendar the outfit I had worn to work that day. I was able to give him the date. The calendar seemed to surprise the officer. See, to Rick it was just normal. Donít worry I have a much better system now. However, I wouldnít be able to remember a date with my new system. J

Our home is always filled with laughter, surprises, friends, and relatives. Life is never dull or boring. I will miss the writing, but we will be too busy celebrating life.

Rick and I walked down to the harbor. We walked about a block along the harbor. Rick asked if I knew where the Office Depot was. Iím lucky I know where our apartment and the hospital are. He wanted to walk up a street perpendicular to the harbor. I asked him why he wanted to go to Office Depot. He was thinking about buying something, I told him I had not brought any money. He decided to stay on the harbor side.

Jason called. His procedure went well. He does not have the same serious problem with his esophagus that Tiffany has. The doctor will address his stomach problems at his follow-up appointment.

I have already packed for tomorrow. I canít wait to go home. I am packing things I am not bringing back. Over the next couple of weeks, I will slowly move everything back to our home. I think we are both eager to be there permanently.

Tiffany is already getting his referrals for his doctor at Hahnemann. He will see Dr. Crilley at Hahnemann the first week he is home. Iím not sure where we will go from there. I know we have certain dates that he must return to Hopkins for tests.

The weeks ahead will be strange. We will be making the transition back to Collingswood. There is also great uncertainty. Audra reminded us again today that remission with CLL takes longer than other types of leukemia. We will just take it one day at a time. Right now we are very encouraged!

Thank you again for the letters, notes, and letters in the guest book. The guest book is the first thing we look at when we wake up and the last thing we look at before we go to bed.

Until tomorrowÖÖ.

Love,

Nance

Tuesday August 15, 2006

Dear Friends,

We are back in Baltimore. L The good news is that I will pack tomorrow night. We will be heading home right after Rickís IPOP appointment on Thursday. Tiff and Ellie will return with us on Sunday.

How is this for fate? Today a card from Dr. Thurm and his staff arrived in the mail. They would have had no idea I would be making an emergency visit today. I told you they are special.

It was so emotional for me to see everyone in the office. Except for a few family members, this was the first time I had been out to see anyone. I received hugs from everyone. It felt so good to really be home.

Dr. Thurm had me good as new in no time. I think I have been his greatest challenge in his career. From the time I was a little girl, I had problems with my teeth. They were just soft. The dentists were not very worried about pain back then. Thus, most of the fear! I donít think I have ever been able to make an appointment for a check-up. Just about the time he is completing some major work on me, I break something. So we never stop seeing one another.

I cannot thank them enough for everything. This is an office filled with caring, compassionate people.

I really had a difficult time leaving today. Nicky and Ellie were there telling us about camp at Holy Savior. I was receiving and sending e-mails to Doreen (Clayton) and Karen (Lacy). I finally had to shut down the computer and depart.

The trip back here was mostly uneventful. I told Tiff not to give Pop the paper until we left. I thought it would be best if he had something to do rather than watch my driving. I was correct in that decision. He even asked me if I minded if he read while I drove. Am I good or what!?

At some point, he asked, "Are we in Maryland," I answered, "I think so." "Whatís the speed limit," he asked. I looked at the speedometer. "Seventy," I replied. He just laughed. He said he hadnít asked how fast we were going; he wanted to know the speed limit. The speed limit changes from 55 in Delaware to 65 in Maryland. How should I know? Remember, I stay in the middle of the pack. I am already watching traffic, looking for police cars and radar, and I even watch for the signs for the rest stops. I canít do everything!

I have gotten really good about asking him if he wants to stop at a service area. The first sign I see, I ask. If it is ten miles, I remind him that he has less than ten minutes to decide. The first two we passed. He was okay. I told him we were approaching the last one on 95. He had less than ten minutes. He said he was okay. I reminded him that I needed to know because I had to get into the left hand lane. I could see a line of traffic approaching in the left hand lane. I told him it would be difficult to get over once they were passing me. Nope, still okay. I mention ĺ of a mile, less than a minute to decide. Now, he thinks we had better stop. Yes, the left hand lane was filled. But, I made it! See, itís not all me!!!!

The kids and I do not use public rest rooms. When they were younger we used to take them to Rutland, Vermont to visit Rickís younger brother and his family. The kids and I got in the van in Collingswood. We got out of the van at Robís house. We would wait in the van for Rick. The trip took 7 Ĺ to 8 hours.

Once I am on the road, I really hate to stop until I have reached my destination. I think I have compromised very well. J

Rick had finished the paper just as we left 95. He really hates my driving in the city. I think he feels it is his job to watch out for unsuspecting pedestrians. However, I had another job for him. I couldnít see the traffic lights, actually not the lights but what color they were. He watched the lights and I just followed his directions.

Rick is losing more hair. I am not sure why that is starting again. Right now, he is lying on the living room floor doing the exercises from the physical therapist. Physically he seems to feel a little better each day. They did tell us that he probably would feel better when he stopped taking the dreaded cell ceft. The constant pain in his shoulder is subsiding with the addition of the painkillers. At least he is getting a little more sleep now.

Dr. Meade from the graft vs. host team told us that they really donít expect to see this until day 40 or later. Monday was only day 38 Ė great! Tomorrow is day 40. We will leave for Jersey on day 41. Rick has had a slight rash running down his back. It follows his spine. It looks almost like prickly heat. We show the team each Monday. Tonight, I reminded Rick that this was not where they expect to find it. He is reading his book on bone marrow transplants. Apparently, this is a common place to find it. It begins like a slight rash and then spreads. I will keep you posted.

I do wish you could have seen the fiasco yesterday when I had to change the Perma Patch that covers his Hickman line. By the time I get everything ready, scrub up, and get the sterile gloves prepared, it looks like I am about to perform surgery. It started out very well. We decided to change the patch. Instead of a rectangle with the short side as a base, we would make the base the long side. I placed it on perfectly the very first try! I looked at it and was so proud of myself. Then, disaster! The blasted patch was upside down. There was a little notch for the Hickman lines. I hadnít seen that. I had to start from scratch with everything. I also had to pull off the fresh patch. Like Rick doesnít endure enough already! I managed to do the second one correctly.

Next, I had to change the tips on the end of each line. This was my first time. I had asked the nurse in IPOP for instructions. Iím not positive; but I think if I didnít have the clip closed, blood would just pour out of the tube. I am too afraid to even ask this question! I was shaky; but I did it. I was completely exhausted by the time I was finished. You would have thought I had just done open-heart surgery.

Rick just finished his bath. I washed his hair. I told him I didnít think he had lost anymore. When he was getting out of the tub, I saw it. His head appeared very white. It looked like he had a very slight tan on the rest of his body. I wasnít going to mention it. I was hoping he would notice it. He did; he wasnít concerned. He still has some hair; it is not completely gone.

This morning I had pancakes, butter, syrup, and coffee! Tiff went to McDonalds for us. Rick had some scrambled eggs. I was in heaven. I donít think he even noticed the coffee. I couldnít believe Tiff was getting me coffee; she knew it was on my forbidden list. She must really feel sorry for me! Iím the one they always tell on Ė even the grandchildren!

When I was getting ready for the dentist, I suddenly remembered my closet of clothes. Why not? I ran in and stepped into the pink, handkerchief hemmed shirt. I found the new top and new belt. I love this skirt and I have never even worn it. Rick walked in and just said, "Now spin for me." You would have to know the movie Dirty Dancing to appreciate the next thing. While I was spinning and my skirt was flaring out, Rick started flipping up the hem. It only lasted for a few spins. He was tired and I was dizzy. But, it was a fun reminder of our dancing days. For at least another year, we will have to dance vicariously through the contestants on "Dancing With the Stars" and "You Think You Can Dance."

Itís getting rather late. Rick asked me how close I was to finishing my update. I just replied, "I could always be finished. I just donít want to stop!" He said he knew he had asked that the wrong way. J

Tomorrow Jason has his endoscopy. We will both be anxious for his results. This is the same specialist I will see in September. I asked Jason to warn him about my phobia.

Thanks again for all the letters, cards, and letters in the guest book. You keep our spirits up!

Until tomorrowÖÖ.

Love,

Nance

 

Tuesday Aug. 15, 2006: Update on David Durkin from my step-mom,  Maureen "Gammy" Walton, ... Here is what Fr. Jim Durkin (David's uncle) told me: David's small intestine is healing slowly - the intestine doesn't seem to be as inflamed as it was. The doctors think it was caused by all of the medications he's been on. He has one collapsed lung and pneumonia in the other lung, but that is also slowly getting better. He is very weak but can sit up in a chair with assistance.

Monday August 14, 2006 

Dear Friends,

First, the good newsÖ Rick has 92% Tedís (donor) blood. Apparently, Rick is the first patient to have these new tests and explanations. Audra stopped a doctor in IPOP to translate the copy we held. He went to the computer. Dr. Meade, the Host vs. Graft doctor called up the results and interpreted them immediately. Yeah!!!!!!!!!!!!!!!!!

Believe or not, we are back in Collingswood! Last night I had to e-mail Tiffany. My bridge (teeth) was loose. I needed to see my dentist ASAP. Tiff called them at 7:00AM this morning. I knew if Dr. Thurm was there, he would help me. I have an appointment tomorrow at 12:30PM.

Dr. Thurm and I go back 25 years. His office is in Collingswood (of course). The last dentist I saw took one look at me and handed me Dr. Thurmís card. That dentist wouldnít even touch my teeth. Dentists Ė another phobia. The first time I saw Dr. Thurm I didnít think he was old enough to be a dentist. And, he was cute. Iíd tell you not to tell Rick, but he is also Rickís dentist. Dr. Thurm has never hurt me!!!!!

One time during school, my cap fell off. I ran to a phone and called Dr. Thurm. No one was there; I left a message and called the emergency number. I left a second message. Not too much later, I received a call in the classroom from the school secretary. My dentist was on the phone. He was in the middle of a procedure that is done while the patient is sedated. He couldnít leave. As soon as he could he called me back. This is the best part. He had the phone number of the school where I had previously worked. I had just moved to another district. He found someone who knew where I had gone and found me. Does it get any better? He is the most caring dentist I have ever known!

And, he sings. I usually take my CD player and turn it up as loud as it goes. Dr. Thurm sings along with the music. If he needs to talk to me, he simply pulls the one side of the headset away from my ear.

The nice thing is that everyone who works for him treats the patients with the same care and compassion. I wish there was some award for him and his entire staff! He has even told Rick that I am a good patient! Now, you know how really good he is!!

We didnít get to bed until late last night. We had to be up early today. I made sure Rick was in a wheelchair to make the long trip to physical therapy. We then had IPOP and the research team. We rushed home to pack to come back to Jersey. I was really tired.

Rick had volunteered to help drive; I just laughed. However, when we reached the Delaware Memorial Bridge, I realized I was too tired to be behind the wheel. Rick suggested we stop at the rest stop just over the bridge in Jersey. I thought we could both take a nap. He insisted he could drive. I trust his judgment as well as mine. I knew he wouldnít get behind the wheel anymore than I would if he wasnít able to drive. Tiffany later told me that they would have come to get us.

I fell asleep the moment I finished unpacking the car. It was almost 5:00PM before I slowly woke up. We head back tomorrow after my dentist appointment.

Rick has had his bath and I am about to get my shower. We are going to bed early tonight. I must remember to tell you the story about our adventure today. I had to change the patch (covers his Hickman) and the cleaves (I think the nurse used a different name) when we got home from Hopkins today. Tonight I am just too tired.

I must thank our friends and family again for the letters and notes in the guest book. He is always delighted to hear from everyone. I do promise that when this is over, each of you will hear from one of us. We couldnít have made this journey alone! Thank you so much for all of your encouragement and humor.

Until tomorrow,

Love,

Nance

Sunday August 13, 2006

Dear Friends,

We are back in Baltimore. L We had planned to leave at 4:00PM, but Rick was too sick to travel. We finally left about 5:15. It was a long drive; the traffic was backed up for miles. We arrived here about 7:45.

It was a whirlwind weekend. Rick was glad he was able to see his mother. She was his only visitor. He spent most of the weekend in bed not feeling very well. He was able to enjoy the cool breeze coming through the bedroom windows. He hasnít been in the fresh air since we arrived in Baltimore. He also enjoyed hearing the kids in the pool. I did ask him if the drive had been too much. He said he would have felt just as sick in Baltimore.

I think it is good for him to spend the weekends at home. Bill and Maureen have both warned me about the fears you face when you are released. It will be more traumatic for Rick because he wonít be able to get to Hopkins if he has a problem. Spending weekends at home will make the move back just a little easier.

Even I had a better time this weekend. Last weekend I didnít feel comfortable at home. Everything seemed unfamiliar to me. I also found myself stuttering again. I havenít done that for a while. The stuttering is left over from the time I fell and hit my head on the cement. I usually only do it now when I am very tired.

I floated in the pool Friday, Saturday, and Sunday. I really didnít want to leave today. Bill got lunch ready for everyone. They ate by the pool. Ellie came over to the pool and asked, "Meem, why are you still in the pool? The picnic is ready." I just told her I would get out in a minute. It was 2:05. I had to go inside to pack at 2:30. If I had to choose between food and floating, it would be floating.

This morning I went downstairs to do a load of laundry. We store food on shelves in the basement. I passed the shelves and saw chocolate raspberry coffee. I picked it up and could remember the taste. I think I would have given anything for homemade waffles, melted butter, warm syrup, and whipped cream. A cup of chocolate raspberry would top it off.

I would have settled for McDonaldís pancakes and their coffee. I asked Rick what he would like for breakfast. I offered to run to McDonalds. He was not feeling well enough to think about food. We ended up with tea and English muffins.

Rick was able to see our neighbors, Dave and Tammy, and Joe. We were just getting ready to leave and they were all out back. That was an extra treat for him. I will be glad when he has the strength to visit. I know he feels cut off from everyone.

Jason stopped over this morning. I asked him to check the temperature of the pool. It was ninety degrees. Tiffany, Ellie, and Nicky, Maureen, and the kids were all in the pool before I was able to get myself ready to get outside in the pool. It was actually cool outside. I was having difficulty getting into the water. Maureen said it really was warm. Bill mentioned the water was warmer than the temperature of the air. Bill actually offered to go turn on the heater. He wasnít even being wise about it. He would have turned it on. I told him I was fine. I really didnít have very long to float anyway.

This afternoon I was lying on our bed next to Rick. I had everything packed. I was just waiting for him to feel better. All of a sudden, I jumped up and exclaimed, "I almost forgot!" He asked, "Forgot what?" I was already running out of the door. I called back, "I wanted to see my clothes." I ran into the other bedroom and threw open the doors. I donít remember looking in the closet since I had to leave school in May.

I was like a little kid who wanted to play dress-up. I havenít even worn some of the summer clothes. I had finally broken down and bought some new clothes that fit me. My favorite thing is twirling around in things with full skirts. Today I had to settle for looking at my clothes. Besides, Rick was too sick to enjoy one of my fashion shows.

I thought maybe I would see the oil that had been blessed by the priest. The maintenance men have keys to all the apartments. I thought Steve might have left it for us when he didnít see us on Friday. It is an odd feeling knowing that someone always has access to your apartment. Hopefully, I will see Steve tomorrow and get the oil. Rick is not sure what is happening. Itís bad when he has the strength to read the guest book. Iím referring to Barbara (Konrad í67) explaining how to anoint Rick. I did tell Rick I am surprised he isnít receiving sympathy cards from everyone. His life is always filled with surprises.

Rick does not exactly enjoy my driving. Now that I think of it, Tiffany wasnít happy with it either. They think I change lanes too frequently. The ride was rather dull because we barely moved all the way through Delaware. Driving through Maryland wasnít too bad. It was after the exit, when he commented, "You are determined to make this ride exciting; arenít you?" I really didnít know what he meant. It was that moment when he warned, "Watch out for that hole!" I asked, "What hole?" "Never mind; you missed it." Then he commented about the pedestrians. I calmly replied, "I can watch the cars and the lights. I canít watch the road, people, and cars, and traffic lights. Pick two!" The cell phone rang at that point. That kept him busy until we were almost to the apartment.

We reached the narrow entrance to the building. I pulled in and didnít hit either mirror. However, I only saw two spaces. They were the ones on either side of the entrance/exit. It is almost impossible to back out of them and maneuver the car into the exit lane. I made a hard left. Rick said, "Youíre okay." I said, "I want to back up a little." He asked, "Why? Did you want to go over the curb again?" I said, "Oh, is that what that was?" I backed up and missed the curb. Then I parked the car. The best thing about these conversations is that no one is yelling or getting angry.

Oh, I almost forgot this one. He said, "I donít know if you noticed the speed limit. I just thought I would mention it changed to 55." I calmly explained that I stayed in the middle of the pack. I donít want to be the lead car; I donít want to be the last car. I stay out of the far left hand lane. I am just staying with the traffic. I guess that was a good explanation because he seemed to be okay with it.

I havenít had time to get homesick just yet. Rick is almost ready for his bath. I just finished flushing both his Hickman lines. He is busy filling out a questionnaire for the Host vs. Graft team. I keep stopping to help with it. I also had to cook dinner when we arrived. Staying busy is the key to making life here easier.

We are very fortunate. We really enjoy each otherís company. We miss our family and friends terribly. If we were both feeling well, we would find fun things to do. I know we would be practicing dance steps! I remember this very short time in our lives when we were completely alone. Jason and AJ lived in New Egypt. Tiffany only lived down the street, but she had a very high-pressure job in Philadelphia. There were no grandchildren yet. We moved all of the furniture out of the dining room and turned it into our very own dance floor.

Rick just finished his bath. The Adavan has helped to relieve his nausea. He was lying in the tub; he looked at me with those beautiful blue eyes and said, "Iím sorry I wouldnít wear a tux at our wedding." I told him it was okay, I still got to wear a wedding gown.

Our wedding was small. We only had immediate family and a few close friends. I will never forget the day I saw my dress. It was all an accident. I went to a bridal store to look for something nice. I fell in love with this gown and hat with the cutest veil. The sales woman said, "Try it on." I said, "I canít. Iím not wearing a wedding gown." Oh well, it couldnít hurt to just try it on. I was in heaven. However, I didnít buy it. I left without anything.

The phone rang right on time. Rick always called me when he got home from school. I was lying on my bed. He asked how my day had been. I told him I had gone shopping to look for something for the wedding. He said, "Youíre not buying something new; are you?" I told him I was thinking about it. He was okay with that. I asked, "How would you feel if I wore a long dress?" Still okay. "How about if it looked kind of like a wedding gown?" I could sense the hesitation on the end of the line. "How would it be if I wore a wedding gown and a hat with a veil?" I knew he was not very happy with this entire thing. His last comment was, "Iím not wearing a tux!"

It didnít seem to matter much because I didnít have the money to buy it anyhow. Somehow, not long before the wedding, I had saved enough money for the gown. I still remember it was $120.00! I was so happy. I was going to wear a wedding gown. I do know that if he could go back, we would have had a very different wedding. Itís okay; the important thing was the marriage. We are both very happy!

Sorry about that Ė he just said that with such emotion.

I am running very late. I still have to get things ready for tomorrow.

Until tomorrowÖÖ.

Love,

Nance

 

 

Saturday August 12, 2006

Dear Friends,

Please donít make us go back. I have spent the most glorious day floating in the pool with all the kids. We had lunch and dinner by the pool. The pool temperature was 93 degrees. I donít ever want to leave again.

I went out this morning to check the pool temperature. I encountered locks on the gates. I realized I didnít know how to get into the pool area. I had to call Maureen to get the combinations. Bill and Maureen have maintained the pool for us all summer. They have a routine for the chemicals and when they shock the water. They have taken every precaution to make sure children cannot get into the pool. I love the pool, but it also makes me very nervous with children, especially when we are not here.

I finally got into the pool area and checked the temperature of the water Ė 88 degrees. I knew it was going to get cool overnight. I called Tiff. She asked why I didnít put the heater on. Thatís easy; I donít remember how to do that. Next suggestionÖHow about I donít mention the temperature to Pop and ask him how to do it. Sounds good to me. Even better, he didnít ask anything.

Rickís mom had come up to visit. She hasnít seen him since the middle of June. Rick wanted to walk out to the pool to show me what to do. His mom remarked about how easy it was to maintain. I said, "Itís really easy. Bill comes over and does everything." J It really is low maintenance if you live where the pool is located. Bill and Maureen sometimes make several trips a day to take care of it. Rick showed me how to turn on the heater. He said it would go off in about an hour. I said that was fine.

Tiff arrived with Ellie and Nicky. Jason went to pick up some lunch for us. We ate and then jumped into the pool. It was heaven on earth. Bill, Maureen and the kids arrived soon after. I quietly told Maureen that I had put the heater on. I didnít want Bill to know. After a couple of hours, I realized the heater was still on. Now, we had to tell Bill because I didnít know how to turn it off. He just shook his head. Eighty-eight degrees to him is not cold! I said, "Humor me, I am probably only going to have a half dozen days in the pool. You got all of the heat waves. I just get this beautiful, cool weather."

We swam all afternoon. Bill picked up dinner. I ate inside with Rick. Everyone else had dinner poolside.

I donít want to leave again. This is the life I always wanted and was lucky enough to have. Rick couldnít come outside. He said he was enjoying the laughter and squeals of joy. That is the next best thing to being a part of it.

We had a hoola hoop contest at the pool. Nicky and Ellie are too funny. Nicky places the hoop at his waist and drops it directly to the ground. His little hips keep moving until the hoop stops moving on the ground. Ellie flips it over her head and takes a bow. Molly was very good at it. Then I announced itís Meemís turn. The kids started counting; I stopped when they reached 100. I was really feeling proud of myself, until I heard Jason yell from the back-porch, "Thatís great, Meem. Iím telling Pop." And, he did! I donít know why they refuse to let me have a little fun!!! To be honest, I am feeling rather stiff. Although, I donít think it was the hoop; I think it is from falling down the steps at the back porch.

Rick is feeling better this evening. Last night he was not very well. Mostly, it is the meds. He is still celebrating the end of his cell ceft. He is happy that he decided to make the trip to Collingswood. He wants so much to see family and friends. With his mask and being careful of distance, he would be allowed. However, he is still too weak to visit.

Tomorrow I must tell you the story about our neighbor, Joe Beierschmitt. He is the reason Rick and I are married. I am already running behind schedule today. Too much floating in that warm pool.

By the way, Maureen told me not to worry about the counts. She said that they could have taken them an hour later and they could have been higher. Those are the words that help when inside you are really scared.

I feel like we live in some in-between world. We donít "live" in Baltimore; we are not comfortable in our real home. In this world you donít live; you survive. Itís like some kind of half-life. I really want us to live again. This wonít happen until we leave Baltimore permanently. Then it will take time to readjust to our real home. The coming weeks will be the most difficult. Iíve had a taste of home. I remember the life we used to have. In order to survive, you have to let go of that life and learn to embrace the one in which you must live.

Donít worry; we will make it. In spite of the IPOP visits, meds, torn rotator cuff, and other countless hurdles, we always find humor is the day-to-day mundane things. Faith, support of friends and family, and laughter will get us through. Thank you again for all of your wonderful notes in the guest book. That is our lifeline; we rely heavily upon it.

If I thought it would work, I would buy some ruby red shoes, put them on, click my heels together and repeat, "Thereís no place like home!" With our luck, we would probably end up in Kansas! J

Until tomorrowÖÖ

Love,

Nance

 

Saturday August 11, 2006

Dear Friends,

This has been another roller coaster ride. Believe me, I do not like roller coasters!!

Last night was just too funny. I was drying Rickís back after his bath. There was a long (long to me) brown (I still think I am blonde) hair on his back. I asked, "Where did this long brown hair come from?!" He replied, "From here." Then he reached to pull out a hair from my head. I screamed, "Donít you DARE pull out my hair!" By then we were both laughing.

Next, he had the energy to read the guest book. Most of the time I read the letters to him. Of all times, this is one that he chooses to read. He read Barbaraís (Konrad í67) letter about the anointing. When he was all snuggled in bed, he mentioned it. I laughed as I jumped onto the bed next to him exclaiming, "Makes you wonder what I am writing in the updates; doesnít it?"

I thought someone had been telling him some of the stories. He has been so careful about Kleenex in pockets. Actually, I think he is just trying to be thoughtful.

I have some things that drive me crazy. Well, maybe lots of things. J My skin is very dry. My hands hurt from washing them so much. I have to put cream on my hands before I help him dry off after his bath. Otherwise, I canít get a decent hold on the towel. I know he has difficulty trying to remove the stopper in the tub. When I told him why it drives me crazy, he made a great effort to remove the stopper before he got out of the tub.

He had been sure that he didnít want to drive home this weekend. I had told the kids that he wasnít sure. Jason wanted to drive down today to go shopping for us. Tiffany wanted to drive down tomorrow. I really didnít want either of them driving down. Besides, he had said that if he felt well on Friday, maybe he would decide to go home on Saturday.

Since he was so adamant about not going home on Friday, I relaxed last night. I had to fill the meds containers. That is usually an hour. I had dishes to do. I hadnít even asked Tiffany what things she still needed from the apartment. Well, I had all day Friday to get these things done. It would fill the day. Besides, he wanted me next to him in bed.

We went to IPOP this morning. By the way, I took lots of pictures. Audra was still trying to get some physical therapy for Rickís shoulder. His insurance will not cover it; however, it covered the transplant! Apparently, I have out of network benefits. Itís a long story, but he will begin therapy on Monday at 8:00AM.

We did receive the news about the amount of Tedís (donor) blood in Rickís blood. They do see some. Audra explained that CLL takes longer for the donor blood to completely take over. We should not be alarmed when they do the bone marrow biopsy on day 60 and they still see the leukemia. They may not see all donor blood until the six month bone marrow biopsy. Itís still wait and watch.

These are the lab results from today:

Labs Results:     8/3        8/4     8/7     8/9 8/11

White cells        2490     3210   4250   5550 3590

Red cells           3.61      3.51    3.58    3.62 3.43

Platelets            57         68      92        121 112

ANC                 1680     2090   3230   4070 2350

 

Some people have asked for a list of normal counts:

                    Low Range     High Range

White Cells       4500             11,000

Red Cells          4.50             5.90

Platelets           150               350

ANC                 1500             7800

Remember, they told us the counts could fluctuate. No one seemed concerned about the numbers today.

I had to go back to the updates to copy and paste the numbers. I canít believe that anyone reads these things. It took me forever to find the chart in the Update section. And, I wasnít even reading!

After I parked the car at the hospital (backed it into a very narrow space!), Rick remarked when he got out, "This is how it looks when you donít have collapsible mirrors." The mirror on the car next to us was hanging by a few wires. Ours are still on the car!

When we walked into the apartment after his IPOP visit, Rick turned and said to me, "How would you feel about driving home now?" Okay, Itís 11:30. I havenít prepared anything for the trip. I have been calling the kids for two days trying to give them coded messages about what we were doing this weekend. I didnít want any pressure on Rick. All I could say to him was, "Yes." I secretly called the kids again (I lost track of the calls today) and quietly told them Pop wanted to leave now. Next thing I know he is discussing lunch. How about lasagna wraps? Everything on his list required cooking and time. Finally, he decided on a grilled cheese sandwich. Then, before I could finish making the sandwich, he was saying, "Maybe weíll wait until after I eat to see how I feel." More secrets calls. He sat down to eat and asked, "Arenít you eating?" "No, Iím not really hungry," I lied. I had a million things to get done before we could leave. There was no time for eating. I ran around like a crazy person Ė okay, maybe that is not a good description. Around 1:00 he decided he still wanted to go. I had made two trips to the car. I packed as much as I could. I wasnít sure if we would leave or I would have to unpack the car!

We arrived home late this afternoon. Traffic was terrible. I had thought ahead and had snacks, drinks, and even a fruit-filled jello pack for Rick. I was just glad to be coming home.

Nicky and Ellie were so happy to see Pop. They ran around the house squealing and playing. Pop is sill not allowed to be around Alyssa. It just doesnít seem fair. The only blessing is that she is young enough to not understand that Nicky is playing with Pop and she isnít. It is very painful for both of us!

When it was time to leave, both kids began crying. They each had to come back twice for hugs and kisses from both of us. They are afraid that we will be gone tomorrow. Tonight was the first night I remember crying. I want to come home. I miss my home, my friends, and my family. I have never been away from home for so long. These next few weeks will be torture. However, there will be a smile on my face and we will continue to laugh each day!

Until tomorrowÖÖ.

Love,

Nance

 

 

Thursday August 10, 2006 

Dear Friends,

Iím not sure that we will get - Actually it is now 3:30PM. That was as far as I got this morning.

This has been one of those strange days. The skies were overcast. I didnít think it was a good idea to try to take Rick out. It began raining just a few minutes ago.

I was just very busy today. Last night I had been lazy. I had left dishes in the sink. We slept in this morning, so everything was on a later schedule.

Rick is very excited about tomorrow. That will be his last day on the cell ceft. He should feel better once he stops taking them.

I found out why Rickís radio station turns into Spanish. This is a religious station. He listens to lots of sacred music and some sermons. Today he mentioned that he was going to listen to his radio and it was Chinese or something. Now, it makes sense. They are reaching a diverse population in the city.

He is still experiencing a great deal of pain in his right arm. I called the nurse in IPOP today to see if he could take more oxycodone. He may take the stronger ones in between the lower dose ones. I must assume it really bothers him because he rarely wants to take any extra pills. In fact, Audra had to convince him to take the low dose.

I am quite anxious about tomorrow. We will probably find out if they have seen any of Tedís (donor) blood. This is news you want to hear, but you are afraid of what you will hear.

I had hoped to get Rick to make a trip home tomorrow. Both Tiffany and Jason are asking. I had told them I was fairly sure we would be home. Tiff had planned to drive down today if we were not coming home. Tomorrow is Ellieís doctor appointment. Next week Ellie and Nicky both have "camp" at Holy Savior Church in Westmont. Jason wanted to drive down tomorrow to go grocery shopping for us. I told him I expected to see him this weekend.

Around 1:30PM, Rick asked if I minded if we didnít go home. I know it scares him to be so far away. I have to be convincing that I am not too disappointed. One never knows; he could change his mind on Saturday. I have to take it one day at a time. I always have to try to put myself in his place. I think I would be very scared. Truthfully, I donít think I would have had the courage to do what he has done. He never ceases to amaze me.

I didnít want Jason driving all the way down here just to go to the store for us. Each time the kids drive here or back home, I worry until they have reached their destination. The drive on 95 is stressful and there are accidents all the time.

I am not allowed to go to the grocery store and leave Rick alone. However, I can take him to the store. I just donít allow him to touch anything. We are almost out of the sherbet he loves. We are really out of several things that you just canít get at Whole FoodsÖ. like regular Wonder Bread, etc. It is only a ten-minute drive from the apartment. It is also much less expensive!

This was another one of Rick and Nancyís great adventures. We had tried to check what we needed and had made a list. We didnít want to get too much. I remembered car keys, key fob (to get back in) and wallet with credit card. Most important, I remembered to have Rick put his mask on!

We left the apartment and I locked the door. I looked at Rickís mask. It was crooked. I attempted to fix it. It slipped out of my hands. All I succeeded in doing was to snap the rubber bands against his face. We both just started laughing so hard we couldnít talk.

The elevator doors opened. There were two men on the elevator. We stepped into the elevator and fell against opposite walls just laughing. I was able to get out, "Donít mind us." Then, Rick asked me, "Do you have the list?" This only made me laugh harder. "Nope! I guess we better just go back up to the ninth floor." We rode back up, retrieved the list, and started all over again.

I have been doing a great job getting the car in and out of the building without hitting it again. The only thing I havenít mastered is looking in the two mirrors to see if there are any pedestrians approaching the entrance/exit. They just want too much from me. I also have difficulty getting over the bump at the exit. I am afraid to step on the gas. We usually rock back and forth a few times before I get over the bump. The good news is that this gives pedestrians time to see me. J Maybe that is why they made it so difficult to get over it!

Rick was very proud of me. I found my way to the store without help. I knew Tiff had a card for the discounts at the store. She had told me once that you could just give them your phone number. Thatís what I planned to do. I had already decided that I would not tell the kids what we were doing.

We ended up with a full cart of groceries. Tiff was so good about buying larger items and making several meals. I just am not able to do that. I bought lots of single serve things. That way I donít have leftovers. Also, much of the food can be eaten at room temperature. Tiffany was also very good at placing dates on any leftovers. We have to be very careful with Rickís food.

I also bought five gallons of water. We still have a five-gallon jug for the water cooler. I have two problems here. First, I am not supposed to be lifting. Second, there is not enough room for me to place the jug on the cooler. I have replaced it twice at home. The second time Rick was watching. I had told him not to watch, but he wouldnít listen. We have an older model cooler. The cap must be removed before you place it on the cooler. You donít have any extra time to position the jug before you have water everywhere. I hoist up the jug. It is rather heavy. Then, I keep moving side to side with the weight of the jug. When I think I am close enough, I throw it onto the cooler. I donít spill much water. However, the water cooler now is in this tiny space. I would never have enough room to move back and forth with the weight of the water. So, I just fill the jug with one gallon at a time. Problem solved!

When we were ready to check out, I realized I didnít know what phone number she used. We now have so many. The only one I donít know is the one in the apartment! I had to call. She was okay once she learned that Pop was with me and NOT touching anything. I told her I just wanted to get him his sherbet. She told me to use our home phone number.

This is very difficult for Rick. He is used to doing all the lifting. I think it helps with the mask. At least he knows that people realize he must be sick. The cashier bagged everything in small bags. Nothing was too heavy for me to lift. I had Rick get in the car and I placed the groceries in the back.

There are two reasons I am admitting to the groceries. First, I did not want Jason to drive down here tomorrow. Second, it occurred to me that Tiffany knows everything I do. She checks the credit card charges to make sure they are correct. She would have found out anyhow. Now, she will know when she reads the update. Since she will see her name in this paragraph, I am assuming that she will read it! J

Hereís something very odd about the sales receipt. It had my sisterís name on it. Donnalee, do you shop at Safeway? I donít know how your name appeared on the receipt. Quite perplexing!

This morning I was lying almost upside down on the chair in the living room. I was talking to Tiffany. My feet were touching the frame on the painting on the wall. I remarked to Tiff about it. The colors were perfect for our living room. It has the dark green of the carpet and the merlot color of the walls. It even has the antique gold frame that I want. It was rather perfect, I thought. Tiff is worried that I have been here too long. She couldnít remember any painting in the apartment. I think there are several; but to be honest, I have never noticed any of them until today.

This is good and bad. I am beginning to think again could be good. I am seeing colors again. However, too much thinking could serve to make me homesick. As long as I can shut down and do what must be done, I am okay. Too bad I am not good at anything in between. Rick says that is one of the things he loves about me, but also why I get hurt too easily. Whatever I am doing, I do it with passion. I canít do anything halfway. I am not sure how I will handle this one.

Fortunately, I donít usually have too much time to think about it. In fact, I must go. The laundry is dry. I also must wake up Rick soon. I want to have him eat dinner. Then after dinner I will clean up and get ready for bath time. As soon as we are done baths and showers, I will turn on the dishwasher. The evening will be over before I know it.

Thank you again for all the letters in the guest book and the cards. This morning it occurred to me that many of our friends might not understand why we have not responded to the letters in the guest book. There just wouldnít be time while we are here. I plan to respond to everyone when we get home. Hopefully, Rick will be well enough to send some notes. He has been touched deeply by the notes from former students and parents. He loved teaching and it was very difficult when he no longer had the strength to teach. The guest book will be printed out when we are finally through this ordeal. It will remain a keepsake for both of us. Please donít ever think that we have ignored anyone. I promise you will hear from us. You have been our strength.

I just checked the guest book. There were several new letters. We are so thrilled to hear from friends over and over again. Glad to hear that Tom Hayden is home safely. Rick really misses "The Menísí Club! Thanks Barbara (Konrad í67), for the information about the anointing. J Iíll let you know how it goes.

Until tomorrowÖÖ.

Love,

Nance

PS Note to self: Check the bath water before flushing the second line! J

 

 

Wednesday August 9, 2006 

 

 

Dear Friends,

I thought I was going to end up typing todayís update yesterday. I didnít have the heart to torture anyone anymore. But, I never had the time to return to the computer.

 

After I ended my update, I laid my head back on the end of the sofa. From this position, I can watch Rick sleeping in his recliner. I know he feels better when he sees me. I didnít see him open his eyes, but I did see the hand slide out from under the blanket and wave at me.

 

I wanted him to eat some lunch. It was already late. We need to keep the meds spread out. He decided he could eat some soup. I heated the chicken noodle soup and took it to him in his chair. I moved the hospital tray over in front of him. I watched as he tried to get the spoon to his mouth. Between the pain in his arm and the tremors in his hand, it is most difficult to do anything. I offered to feed him. He did tell me that I didnít have to write about this. I asked him why. Those noodles are hard to eat when you are in great health. Besides, I had to admit I needed Tiff to take care of both of us. He was only able to eat a small amount.

 

He spent most of the day in his recliner or in bed. After his bath, he was feeling a little better. I think that could have been from the excitement. I was in the process of washing his hair. I have a new system that is easier for him. I have him cover his face and ears with a hand towel. I drape another hand towel over the saran covered Hickman. Then I use the washcloth to get his hair wet and apply the shampoo. I use the washcloth again to rinse his hair. When I feel the soap is almost completely gone, I start using fresh, clean water from the sink on the washcloth. I was in the process of walking back to the tub when I caught my toe in his pajama bottoms that were on the floor. All Rick heard was the ever so slight scream as I almost fell on top of him in the tub. Since his face is completely covered, he saw nothing. He is just very familiar with the sounds I make when I am about to fall or have just made a mistake. I think the laughing made him feel better.

 

Come to think of it, bath time is usually filled with surprises. The night before the tub almost overflowed. I have a routine at night. This is not the time to be creative. I turn the water on in the tub. I close the door to keep the bathroom warm for Rick. I flush the Hickman lines. I tape Saran Wrap over the Hickman. I guess we were talking too much. I usually check the water several times. I opened the door, gasped, and ran to turn off the water. Rick asked, "How bad is it?" Well, he couldnít get in it. If he had three lines to flush instead of the two, we would have had a flood.

 

Rick cannot drink cold fluids. They bother his stomach. I now know why I would see Tiff with a glass of juice in a bowl of warm water. Donít worry; I am doing the same thing.

 

Rickís counts are still improving.

 

Labs Results:     8/3        8/4     8/7     8/9

White cells        2490     3210    4250    5550

Red cells           3.61      3.51    3.58     3.62

Platelets            57         68      92        121

ANC                 1680     2090    3230    4070

 

Some people have asked for a list of normal counts:

                    Low Range     High Range

White Cells       4500             11,000

Red Cells          4.50             5.90

Platelets           150               350

ANC                 1500             7800

 

The lab results about the donor blood beginning to take over were not back yet. Hopefully, we will have the results on Friday.

Yesterday I walked to the corner store for a few groceries. It was beautiful. The sun was shining, the humidity was almost non-existent, and the gentle breeze was cooling. I was sorry that Rick wasnít well enough to take a little ride in the wheelchair. I think today is just as wonderful. However, I am not sure he will be up for a ride just yet.

 

We each now have a CD player to take to bed with us. Rick always like his little radio. However, sometime in the middle of the night, his station becomes a Spanish station. He has switched to the CD player.

 

I have the new player that Jason brought down to us. I havenít figured out the buttons yet, but it is much safer for me. The headset only has one cord connected to it. The other headset had cords on both sides. It was also much longer. One morning I woke up with the headset around my neck, and I had the cord completely wrapped around my waist. Rick watched me turning around trying to untangle the mess. He also pointed out that I had fallen asleep wearing my glasses. I still have no idea what the woman is saying about stress on the CD. Iím not doing anything strange (other than the expected), so I assume it must be a good tape.

 

By the way, Rick and I were watching Access Hollywood the other evening. They had a belly-dancing instructor showing Maria MÖ? how to do belly dancing. I want a new instructor. I learned more in that two minutes than I did from all the lessons I took. Any girlfriends ready to start lessons? Itís great exercise!

 

Good News! Before dinner, I was able to get Rick to take a walk to the store on the corner. He wore his mask. I didnít let him carry anything. He chose some things he thought he would like to eat.

 

When we returned to the apartment, we saw one of the maintenance men Steve. He asked how Rick was doing. It was the first he had seen him. Thatís if you donít count the time he entered our apartment to change the air filter. Remember, I rushed him out of the apartment. Then I chased Steve and the other maintenance man down the hallway to apologize and explain why I had panicked. Okay, back to this afternoon. Just as we were about to get onto the elevator, Steve approached us. His church is having a healing service tomorrow night. If I wanted to give him a bottle of oil, he would have the priest bless it. Steve has a slight accent. I had to ask several questions. He explained that at one time it had to be oil from the church Ė at least thatís what it sounded like to me. Now, it can be any oil. If I didnít have any, I could go to Whole Foods and buy a bottle. Then he explained that you wash your forehead and anoint your forehead just like the priest. For those of you who remember, I have been a Presbyterian my entire life. Yes, I know that sort of conflicts with my Rosary.

 

I thanked him, and we went up to our apartment. I went right to the cabinet where Tiff stored baking stuff. Thank you, Tiff. There was a bottle of peanut oil. I quickly wrote our names and apartment number on the bottle. I said to Rick, "Ill be right back." I hurried back to the lobby. Steve was still polishing the floor. He promised to return it Friday. While he was saying this, I accidentally backed into the elevator when it was closing. He added, "Iíd better get this back quickly!" I told him the sad thing was that it wasnít for me. I think he figures we both could use it.

 

Now, I am not sure how Rick will respond to this. I will also have to find out how the priest anoints someone. I figure if he doesnít want to go along with it, I will wait until he falls asleep. Then I will do the anointing. J He may wonder why he smells peanuts in the morning. Friday should be interesting!

 

Iíve also noticed that Rick is trying to be very careful of Kleenex in his pockets. When I pick up an article of clothing to place in the laundry, he is always reminding me to check the pockets. Did anyone tell him about the update entry? He swears he doesnít know about any of the entries. Well, maybe the ones I tell him about.

 

My sister told me that I never finished my story about the broken microwave at home. Sorry. I waited for Bill (yes, my ex) to come over to go swimming. I had already checked the circuit breakers. I was not sure if one was off. I can usually handle the breakers. He went downstairs and fixed the breaker. Then he fixed the clock on the microwave. I donít remember the last time that was correct.

 

I told you divorce doesnít work in this family. Who would have thought that you would be taking care of your ex-wife and her husband? Only in our family. Our dinner tonight was compliments of Maureen (Billís wife). We had homemade shredded roast beef and peppers. Itís one of Maureenís recipes and one of our favorites. She made it before we left and froze containers for us to have here. Does anyone watch Reba on Friday nights? I think our familyís real life comedy would be funnier. Maureen and I really are close friends!

 

We are headed to bed. We are anticipating a lovely walk to the Inner Harbor tomorrow. Wish us good luck!

 

Until tomorrowÖÖÖ.

 

Love,

 

Nance

 

 

(I have published two entries today. One for Monday and one for Tuesday. Somehow with our trip home to Colls this past weekend we were one entry off every day.  Now we should be all caught up :)

Tuesday August 8, 2006

Dear Friends,

It was so wonderful to sleep in this morning! It was almost 9:30AM when Rick had to get out of bed. I am ashamed to admit that I could have fallen back to sleep. He doesnít care if I sleep. I just want to get him breakfast. We are already starting on a later schedule with meds.

Rick thinks he may try to catch up with his reading list on the computer. He joined a group on line. The woman Granny Barb who started it, finally succumbed to her leukemia. She was wonderful. We met her in Philadelphia when she was on tour. Although one would never guess from her nickname, she was very professional and held several impressive degrees. One of Englandís top CLL doctors writes on the list. He even answers questions for people.

Here is my problem. Rick will be on the computer. I am afraid I may suffer withdrawal symptoms if I canít write. Iím sure I can find something to clean. If I were home, I would finish painting the foyer. The living room was my last project. I needed something to take my mind off the impending transplant. I wish I could remember what my grandmother always told us, "Idle hands are the devilís playground or workshop." We learned to sew, crochet, knit, read, and I donít remember the last one. We used a crochet hook and made table doilies - tatting? Instead of yarn it was more like thread. I always have my spiral notebook and my purple pen!

For those of you who are wondering about last night, Rick has his new patch. It was an interesting adventure. Got to run, I hear Rick on his way out to the living room.

Be careful what you wish for. I do know that this is not really my fault, but I still somehow feel guilty. Rick is not feeling well. I hadnít wished to be able to type on the computer. I finally got him into his recliner, socks on, and covered with his soft fleece blanket. He does not have a fever. The walk to the Inner Harbor will be postponed until later. I will keep you posted.

During my first year at Highland I worked with Kathy Pesch. It was a reading class. Kathy is a wonderful teacher; I enjoyed working with her. However, one of the short stories was "The Monkeyís Paw." I can still have nightmares about it. I did tell her that I could never be in the classroom if they read it again.

I also worked in a study hall that year. One of my students always had stories he had to read. I would read to him. He would always ask, "Miss S, do you think you can read this without crying?" I would tell him that I wouldnít know until I was reading. Yes, most of the time I did cry. Curtis just accepted it.

Kathi (OíNeil Ė worked with me at Highland), it was so wonderful to hear from you. I am becoming a little nervous about this journal adventure. I had no idea that anyone besides family and old friends from our high school would bother reading this. Unfortunately, it is my therapy and escape. I just canít stop. Iím glad you saw some pictures. We have lots of them. Tiffany just hasnít had the time to post them on the web. They will come.

Back to BaltimoreÖ. Last night was quite the adventure. Before I tell you the story, I want you to know that Rick does have his new patch on!

Rick was in the bath by 6:00PM. As soon as I had him in his pajamas and settled in bed, I jumped into the shower. I had a plan. My hair would have a chance to dry while I was working on the perma patch. I will never get used to washing my hair at night. By 6:30PM we were ready to begin our new adventure.

I opened the package. I had counted; we had three patches kits. We donned our masks. I opened the pack of sterile gloves. I spread the package open on top of Rickís stomach. I opened two alcohol packs and dropped them on the sterile surface. Iím not sure why I would need them, but they were in the package. My glasses were already fogging up on me. So far, I havenít really done anything. I ask Rick, "Do I need the sterile gloves to remove the patch?" He didnít think so. I had read the instructions in the binder. I did remember it did give directions without the use of the gloves. I had already washed my hands really well!! Removing the patch was not easy. I had no idea that the clear center was stuck to the skin. I kept watching his face for looks of pain. Finally, success!

Now I had to put on the sterile gloves. I looked at the package for a long time. The word cuff was printed in one place and the word thumb in another place. I could see the opening for the cuff. I do know where my thumbs are. It wasnít quite that simple. Finally, I found the courage to try to get them on. I had it right!

The next step is to clean around the Hickman. There is this device that has a triangular sponge on the end. It has a handle with two wing-like stems on either side of the handle. You squeeze the two wings and that breaks the seal. The liquid in the handle flows onto the sponge. I heard the crack and also felt the liquid on my hands. Had I pressed too hard? Oh well, the sponge was getting wet. There are some things from my one training class that I remember very well. Never, never run the sponge over the same place twice. Clean right on the Hickman site first (this was really difficult for me!), and then clean in little circular clockwise motions in rings around the Hickman. Begin at the same place so you know when to start a larger circle. (One time I had watched the nurse do all of this and then place the sponge right on top of the Hickman!) This was the painful part for Rick. I thought I was scrubbing too hard. No, it burns. The next important step is to allow this area to dry completely. Do not blow on the area. Do not wave anything over the area to help it dry. It MUST air dry on its own. No problem here. I donít want to think about the next step!

Okay, on to the final step. Apply the prima patch. I looked at it for quite some time. It is a rectangular patch. There is a ĺ inch white adhesive border. The center is clear so you can see the Hickman port. There is a little U-shaped cutout at the bottom. The lines are to be placed in that cutout. Then there is a little piece with a smaller version of the cutout. This is placed on the bottom of the bandage. It is placed on top of the bandage. One starts at the bottom corner, then it is manipulated under the lines and back over the top of the bandage. This seals the lines at the bottom. The last step is to peel off the remaining strip of adhesive and write the date on it. Then it is applied to the top of the bandage on the narrow adhesive strip. Simple Ė WRONG!!

My forehead is perspiring, my glasses are foggy, my normally shaky hands are not used to working with gloves on. I keep looking at the picture on the back of the patch. It isnít very helpful. Well, I guess itís now or never! I gently and very cautiously begin to remove the backing on the patch. How do doctors perform surgery? I need someone to wipe my brow! Within seconds the patch is a crumbled mess in my gloved hands. My hands are also stuck together. It was tricky just removing the sterile gloves with the crumpled patch stuck all over them. Finally, I was free. However, Rick still had nothing covering his Hickman. He reached for another pack to open.

I reached for the Patient Handbook. I had read the instructions earlier. I read them several time and decided they were fairly useless.

I know I should not be judging anyoneís writing. I have no idea what I type most of the time. This may be hard to believe, but I took every writing course available at Glassboro and Rutgers Ė Advanced Writing, Persuasive Writing, and Technical Writing. I attended weekend Writerís Workshops at Rutgers. I attended many workshops on writing just for fun. I received Aís in all the courses. I do know how to write; I am just not concerned about grammar and structure now. Just in case any of my bosses are reading this mess, please check my transcripts for verification. I also majored in French and Spanish when I first entered Glassboro. I changed my major to English when I returned to college after my kids were older. So, PLEASE do not judge me on my journaling.

Let me tell you, the person who wrote these instructions never had a course in technical writing. The instructions are really useless. I had two more patches left. I thought long and hard before I attempted the second patch. Rick thought he remembered the nurses applying just the top of the patch and slowly removing the backing as they applied the patch. This seemed to be working. I had had no idea that the clear center was sticky. I worked very slowly. I was very nervous. Rick was very encouraging. It took some time, but finally it was on. I still had to position the little patch on the bottom. That took both of us. He had to hold up the lines while I tried to get the sticky patch secured to the one end and then under the lines. Finished! Writing the date and placing it on the top of the patch is a no-brainer. That will work for me. I donít even know how long we had been.

I do know that when I went to the kitchen to get a drink for Rick, I passed a mirror. I caught a glimpse and backed up. Some of my hair was standing straight up in the air. Apparently, I was bent over with my head upside down for so long, my hair had dried in that position. I fell into bed next to Rick and we just laughed!

I called Tiff when we were done and told her, "We will be in need of more perma patches." She told me to check the box of medical supplies I had just received. I think I counted five. She will still be ordering more.

Yesterday, we received our mail from home. I had a manila envelope. I just assumed it was from Black Horse Pike Regional School District. I told you my eyes are really blurry. I had looked at the return address. To my surprise it was from Tiffany. Gastro-Intestinal doctor. I had forms to complete and my appointment was scheduled. I did notice that she had given me a few weeks to recover after we were home. She had also made sure it was late in the day so I wouldnít miss work. Iím not sure when she was going to tell me that I had an appointment. She is also making arrangements to get my records from the specialist I saw right before we left for Baltimore.

I donít like seeing new doctors. Most of them just canít deal with this needle phobia. I have heard some doctors say that you just have to keep doing something until it doesnít scare you anymore. Well, let me tell you, I have been through a lot over the last couple of years. I have seen needles, listened to conversations that left me traumatized, and if anything my phobia is worse.

Tiffany is already making arrangements to drive back to Baltimore. I keep trying to assure her that we are fine. Mostly, I think she is worried about what we are eating. I am trying to keep up with her routine. I even offered to place Rickís juice in a bowl of warm water. The cold juice is not good on his stomach. She thought of everything. She also knows I canít go to any store except the Whole Foods store on the corner. Everything is organic and expensive. We both know that she has been very careful about spending money. She is really quite incredible.

She reminded me that I was not allowed to drive to the Safeway grocery store. It isnít that far from the apartment. However, Tiffany has read the entire Patient Handbook. They stress that the patient must have someone with them twenty-four hours a day seven days a week. I really must wonder how much thought was used when they decided upon the In Patient Out Patient transplant procedure. There are major flaws!!

When our lives return to normal, I intend to write them a letter explaining the problems with the procedure. I also have some recommendations to make the procedure safer and more tolerable for the patient and the caregiver. Fortunately for them, Iím not sure out lives have ever been normal. I do think this has to be a priority for other patients. I would hot have made it if I hadnít had Tiffany taking care of both of us.

Itís 1:00PM and Rick is still sleeping. I did make the bed and scrub the bathroom before I got him settled in his recliner. I have the bedroom door propped open so he can see me when he wakes up. I really canít do anything without waking him. The laundry is done, but if I try to put it in the dryer it will make too much noise. I canít clean up the breakfast dishes for the same reason Ė too much noise. I still donít know how he sleeps through the noise of the construction. I promise I will stop typing. I canít believe anyone is still with me at this point!

Until tomorrowÖ..

Love,

Nance

PS Rick is watching TV. He is feeling much better. I am going to send this to Tiff. Then I am going to join Rick in our soft bed.

 

Monday August 7, 2006

Dear Friends,

We did very well this morning. I was going to leave without making the bed. I had started making the bed every morning to save Tiff one more job. I just couldnít do it. I made the bed! Then, I finished loading the dishwasher and turned it on. I am even washing the plastic cups and utensils. I swore I wouldnít do that.

We made it to Hopkins just on time. I had to drop off Rick at the front door. I went to park the car. I backed it into a very small space. I was very impressed with myself. I had left the apartment parking building, driven to Hopkins, and parked the car. I hadnít hit anything! And, we made it back to the apartment with no accidents!!

I wish I could say that our visit at Hopkins had gone as well. We were scheduled in HIPOP today. I do not like this unit. It is cold Ė literally and figuratively. We didnít recognize one nurse. Miss Brenda does the labs. Rick came out to the little waiting room inside the unit to tell me where he was going to be. He was seated in one of the recliners in the back. When I passed MISS Brenda, she said, rather sharply, "Weíre really busy in here today; you may have to wait outside!" I ignored her and got Rick settled in. I told him I would be sitting outside when pigs fly. MISS Brenda really doesnít want to mess with me! She may be three times my size, but I would win this fight!

Rick was cold. I went to look for blankets. I vaguely remembered where I had found them the time we had been in this unit. The cupboard was bare. I stopped a nurse. She went back to get one. I could have told her it was empty. However, she didnít even want me to follow her. I asked about the blanket warmer. Yes, they had one, but I could not have access to it. She did get him a warm blanket and a regular blanket. I quickly "borrowed" two pillows from an empty room. Itís not stealing if you are not keeping them; is it? I told Rick not to worry; I would go to the IPOP pantry and get him another warm blanket when he needed it. HIPOP is the unit with the locked pantry. That is not surprising.

Rickís counts were very encouraging!

Labs Results:     8/3        8/4     8/7

White cells        2490     3210     4250

Red cells           3.61      3.51     3.58

Platelets            57         68       92

ANC                 1680     2090     3230

Some people have asked for a list of normal counts:

                    Low Range     High Range

White Cells     4500             11,000

Red Cells        4.50             5.90

Platelets         150              350

ANC               1500            7800

Rick was planning on asking Audra when we would know if the donorís blood was beginning to take over his blood. Before he could ask the question, Audra brought up the subject. The test results will be back later this week. They will indicate if the donorís blood is working. Itís best not to think about it right now.

This is Monday; we met with the Graft vs. Host Research team. Nothing. The little rash I have noticed on the back of his head is a birthmark. I have mentioned this rash each time we have seen them. Donít you wonder why they decided to tell me what it was today? Maybe they were just tired that I kept mentioning it. Now they tell us that we are reaching a point where we may start to see the graft vs. host. I have been looking for a rash. Yes, I have mentioned checking him all over for rashes. Today, they also tell us it doesnít usually start like a rash. It will look like sunburn. It will probably be seen on his ears and maybe his face first. Or, it could be on the palms of his hands, or the soles of his feet. If it shows up when we are not scheduled for a visit, donít worry. Just tell them when we are back for his check-up. Unless, of course, he looks like a tomato. That would be an indication to call the doctor! I have to wonder why I havenít been told all of this earlier.

Rick can stop taking his cell ceft Saturday. That was really good because I was out of pills on Saturday. Last night, I was at the table checking meds, and counting pills. He also stops taking V-fend today. He must stop taking the potassium. He hadnít taken it for a few days, but that was not a permanent decision. I must do the pills again this afternoon. I have to remove all the potassium and V-fend.

I have to take a break from my fun. I have a box of medical supplies that need to be checked. The laundry is almost finished. The dishwasher needs to be unloaded. I also need to clean up from lunch. I really wonder how Tiff did all this and took care of Ellie. She is still handling all of our finances. I didnít even bring the checkbook back with me. I also have to figure out how to change Rickís bandage covering his Hickman. That should be fun!

LaterÖ

How on earth did Tiff get everything done? Rick is completely spoiled with her cooking. I should run the vacuum, but Rick is asleep. I guess I will just have to type. J

Tiffany has checked on us several times today. She really isnít happy with this arrangement. I am trying to tell her that we are just fine. We wonít be having dinners like she cooked, but they will be fine.

I told her that I had picked up the box of medical supplies in the leasing office downstairs. The receptionist asked what our apartment number was. I looked at my keys. For some reason, I always think we are in 804 instead of 904. There is a very simple explanation for this slight error. The first day we were here, we met a gentleman on the elevator. He had been out walking his two gorgeous collies. He and the dogs were really friendly. I was hoping that Tiff and Ellie would run into him while we were living here. I memorized eighth floor. It has just stuck in my brain.

Last week a paper fell out of the small suitcase I take everywhere with us. Ellie asked what it was. I looked at it and said that it was information I had given the nurse the night we had admitted Pop to the hospital. I read it and said, "Thatís not right." I had listed our apartment at 804. Before we leave, I am sure that I may accidentally meet the residents of 804. J

Rick and I rode up on the elevator with the cleaning service ladies. They were on their way to the eleventh floor. They asked if we were here with Marriott. I looked at Rick for the answer. He shook his head yes. They told me they were our cleaning service. I explained that we had to turn down the service because of my husbandís illness. When I told Tiff the story, she just sighed. Apparently, we are here with Bridgestreet not Marriott. Now that to me is not a mistake that counts!!

Tammy (our next door neighbor), I am so sorry that we didnít receive your letters. Tiffany has really had trouble with the web site. She is on the phone with them all the time trying to get things to work correctly. They are not forwarding the mail from the web page to our AOL address. You are among several people who have said the updates are sad. I am so sorry. I try to tell the truth about Rick and his health. Mostly, I try to remember the funny things that happen here. This would have made a great reality show. I will be glad to be home in September.

I thought I had been so clever with Rickís bandage and the cleaves (the blue tips on the end of the Hickman lines). I made sure they were changed on a Monday. That way we would always be in the hospital so I wouldnít have to change them. The Graft vs. Host team always works on Mondays. Today, Rick told me the nurse wouldnít change it. They donít change it when your counts hit a certain number. She didnít mention the number. He did ask her to change the cleaves. I donít think she was happy about it. I know I wasnít happy with her procedure. I even stopped her and told her that I had been told to do things differently. She told me her way was just fine. I watched her drop the new cleave tip on Rickís jeans. She attached the saline without cleaning the tip with the alcohol pad. I said something. She replied, "These are new tips." Well, the jeans are not sterile Ė hence the sterile gloves on her hands. I told her I was told to make sure I had the air out of the saline and heparin tubes. Her response, "Thereís not enough air in here to hurt him." Then she proceeded to place the adhesive tape on the cleave and the line. I had been told never to do that. It should never touch the cleave. It is a major source of infection. If Sasha is our nurse again, I am requesting someone else!

I have gotten the three-ring binder out. I found the instructions on how to change the bandage. The nurse did show me the first day we were in Hopkins. That was some time in June. Rick didnít have the Hickman in yet. I practiced on a plastic dummy. I did it once. Actually, I donít think I changed the bandage; I think I watched. Tonight should be interesting. The instructions are not the same as what I was told. There are several sets of instructions. If you haveÖ. thenÖ. If you had such and suchÖ. then follow thisÖ They are all medical terms I have never heard before. Iím not sure what I have. He will be getting a bath early tonight. I donít want to change the bandage until he is out of the bath. We may be a while with this one. First, I will check how many bandages we have. I need to know how many mistakes we can make. J Stay tuned; this could be exciting.

Rick wanted a grilled cheese sandwich for lunch. Thatís okay, I really donít mind washing the pan. I made the sandwich and placed it in the frying pan. It was then that I noticed the mold on the edge of the cheese. I grabbed the cheese and top slice of bread out of the pan. I just threw it in the trash. I also remembered to remove the pan from the burner. I am so used to gas instead of electric. I opened a new pack of cheese and started over. I couldnít figure out why the bread was browning like it was. That would be because I buttered the bread and placed the butter side facing the cheese. Then I placed his finished sandwich on a Styrofoam plate and melted the plate. At home a grilled cheese sandwich is never this difficult.

Last night Rick asked for Cran Grape juice with dinner. At 8:30PM I ran into the bedroom and said, "You wanted Cran Grape juice with your dinner; didnít you?" Rick was already in bed under the covers. He just kept laughing. I asked him why he hadnít said anything. I had given him water. Three hours later I remembered. Maybe I should just be happy that I finally remembered!

Oh, by the way, Tiffany, just in case you are actually reading this. I want you to know that I placed the pan on the burner that I had turned on. Iím used to turning on the stove and seeing a flame. I only tried to cook on the wrong burner one time. Okay, so maybe it was the ONLY time I tried to cook.

I may as well admit this one now. Tiff will eventually find out anyway. Last night I plugged in Popís cell phone. I just forgot to plug the other end back into the wall socket. Once again, a minor mistake!

Rick just woke up. I think we have better decide on dinner. Our chef isnít here, so there are not as many choices. Iím thinking take-out that delivers or a short walk to Whole Foods for a cooked chicken. Sorry, Tiff.

Donít fret, Tiff. Pop had your lasagna roll-ups!

I am running the bath water for Rick. I am planning plenty of time for this bandage change. I expect we will both be exhausted by the time I am done. Donít be concerned; we are usually exhausted from so much laughing!

Until tomorrowÖÖ..

Love,

Nance

 

Sunday August 6, 2006

Dear Friends,

Just another day in paradise. Please forgive me if the updates are confusing. I am having great difficulty trying to remember what day it is. I finally found a newspaper and worked from there. I keep thinking it is Saturday. Tomorrow we will be back into our routine.

This has been an interesting day. We slept late because we went to bed so late. Rick has been napping on and off. I have been making him small meals. He asks what we have to eat. I spend some time in the kitchen and come back with a few suggestions. There is plenty of food. Iím just not sure what to do with some of it. Tiffany makes very interesting and delicious meals. She is a creative cook!

My idea of lunch used to be a container of strawberry yogurt and a bottle of water. Yogurt is now on my forbidden list of foods. So, I am happy with a can of tropical fruit. I can eat it right out of the can with a plastic spoon. So simple and no mess.

I was in a quandary when he requested lasagna roll-ups. Tiffany makes them for him whenever he wants them. I searched for sauce. I remembered something about sauce in the freezer. I found the frozen sauce. I also found a bowl of frozen shells. I just donít know if Rick can have them. Tiffany is very careful with his food. I had to call Tiffany. Yes, the frozen shells were fine for Pop. Problem solved.

After I had his meal ready for him, I decided I had better get to work. The bed still wasnít made. I thought I would change the sheets. I never know what tomorrow will bring. Today I am off. I noticed the feather down comforter that is on top of the mattress was half way down the bed. I know this sounds simple, but it isnít. Everything is covered in dust mite, bedbug free zippered barriers. And, I do mean everything. I had to find the zipper and then try to maneuver the down-filled cover. Tiff had talked about doing this before. Finally, I stripped the bed and put on the clean sheets.

Next, I figured I had better do the laundry. I already had two loads of wash. Tiffany had all the laundry done before we left on Friday. Hard to believe that we have been here less than twenty-four hours and have that much laundry.

I know that some people think we are just being fanatic about our clothing, shoes, towels, etc. Weíre not. For instance, when I asked the nurse about changing the sheets, she didnít have an answer. She only knew that they changed the sheets every day. Weíve settled on twice a week.

Rick is not supposed to use the same towel twice. He gets a bath every night Ė even if that were not his routine, it is mandatory. We have two sets of towels here.

Bill and Maureen suggested that we place paper towels in the bathrooms at home and also in the kitchen. That way no one will spread germs. Dishtowels and sponges are very dangerous. They have lived this life since 1996; they understand.

The slightest infection could possibly be fatal. We cannot be too careful. Even the nurses stress this to us all the time.

The first load of laundry was in the washer. I decided the next thing I had to do was mop the bathroom floor. I found the swifter thing in the closet. In the top of the closet, I saw the box of wet cloths for this device. I grabbed the box. The little plastic top wasnít very tight. The next thing I knew the wet cloths were on the kitchen floor. The liquid was all over the carpeting, the kitchen floor, and me. Oh well, I guess I will just mop the kitchen first. Fortunately, I have a second load of wash. Iíll just throw these clothes in with that load.

Tiffany must have the patience of a saint. She does this every day. It seems like all I do is prepare food, do laundry, and clean. I havenít even gotten to the dishes yet. The meals are not Rickís fault. He is the perfect patient. He doesnít feel well and many things just donít taste the same to him. He also must eat several small meals a day. She accomplished all this and took care of Ellie and me.

Our drive home last night was very interesting. We had only reached the corner when I saw a mosquito in the car. I tried to kill it, but missed. He was darting back and forth on the windshield. This was quite a distraction. However, it was keeping Rick alert and awake. I must admit that I was afraid that if he fell asleep, I could get lost. Rick was wearing jeans, a tee shirt, and a long sleeved shirt. He had socks and sneakers on. I had on shorts, a tank top, and flip-flops. I didnít think the mosquito could bite Rick. However, I didnít want to take that chance. Rick never goes out in the evenings because of the mosquitoes. He has developed an allergic reaction to the bites. He has to have them surgically removed and that requires stitches. This was certainly not the time for him to be bitten. He killed the nasty critter just before we reached Route 130.

Rick was freezing all the way back to Baltimore. He had forgotten to bring a sweatshirt with him. I just told him to turn off the air. I was hot, but I was more concerned with his chills.

As soon as we were inside the apartment, I took his temperature. No fever! I made him a cup of tea to get him warm inside.

I noticed that the backs of my legs were aching. I wondered what I had done. Then I remembered. I spent Friday and Saturday running up and down steps. I do not believe I have been on a flight of steps since the middle of June. I must really be out of shape!

Tiff mentioned to me today that Bill thought Rick had looked pale yesterday. He thinks he may need some blood. We will be glad to be back under the watchful eyes of the nurses tomorrow.

It is now 6:30PM. I have made dinner for Rick. He decided this time he would like the lasagna roll-ups. I think I actually figured out how to use the power on the microwave. It seems like I have been making meals all day. But, I think Rick is feeling better. That is the most important thing!

I am waiting for the dryer to finish so I can put away the last load of laundry. I finally loaded the dishwasher. It is a sad excuse for a dishwasher. One must make sure the dishes are clean before they are loaded. Do not place too many dishes in it. Run it twice. One might ask, why bother? The answer Ė I canít afford to trust the sponge or dishcloth to make the dishes germ free.

We are about an hour away from bath time. I am going to set the table for breakfast. I am anxious about the counts tomorrow. It seems like it has been so long since we have had them checked.

Tiff has called several times to check on us. I am assuring her that we are doing just fine. The only thing I havenít done yet is put out the trash. I did try it once, so I think I will be okay. J We do miss the company. I do have to find out that I can do this on my own. Maybe this arrangement will give us more of an incentive to go back to our real home. I still am having difficulty with hearing Rick and even refer to Baltimore as home.

The day has been a blur. I havenít had time to think much about anything. With the exception of writing, I have been kept quite busy. I have noticed one thing Ė silence. There are no cartoons or childrenís movies, no squeals of laughter. What I do hear Ė the elevators and the trash chute. There are two elevators directly across from our front door. Each time one passes this floor it rings. Iíve also noticed that people put out their trash at odd hours. The trash chute is directly next to our bedroom. It is this silence that reminds us of the normal noises in apartments. I have also been acutely aware of just how weak Rickís voice is. He canít talk very much. I seem to remember some song with the words, "silence is golden." I believe that silence should serve as a reminder of how precious the gifts of hearing and speaking are.

Iím not very worried about silence or becoming bored. There is too much to do to become bored! What timing! The dryer just stopped. Back to work. See why I donít worry? I am just happy that I feel well enough to accomplish all this!

Until tomorrowÖÖÖÖÖ

Love,

Nance

Saturday August 5, 2006 

Sorry for the delay. Tiffany is still trying to get the computer to work. Things are not going well. As soon as she can, she will publish the updates.

Dear Friends,

Secret Mission Collingswood Ė Successful

We have just returned from a trip home to Collingswood. It was a last minute decision. Ellie has a doctorís appointment this week. Between work and vacations, we were having difficulty finding them a ride home. Thursday afternoon I packed. I knew things could change very quickly. IPOP visits can always be a surprise. I wasnít sure if Rick would still want to go. We kept the trip a secret for several reasons. We werenít sure we would actually go. Rick cannot have visitors. If anyone knew we were home, we would surely get phone calls. I knew we were not able to deal with anything more than the trip.

We arrived in Collingswood on Friday around 3:00PM. Ellie and I were in the backseat. She had slept most of the way home. She woke up just as we arrived in Collingswood. We reached Haddon Avenue. Ellie and I waved at all the people and familiar stores. We were in our own little parade.

We pulled into our driveway. I had a strange feeling in my stomach. The pool looked inviting. We walked up the steps to the screened in back porch. It was cleaner than I had seen it in years. We used to live on our porch. We even had our breakfast sitting there. The last few years Rick hasnít had the energy to set up the porch furniture.

We unlocked the door and walked into the kitchen. It was so clean it looked like a sample home. There was a big welcome home sign hanging for us. Everything was spotless. We even had mints on our bed pillows Ė Mollyís idea. Bill, Maureen, and the kids had spent Thursday and Friday morning scrubbing, dusting, running the vacuum, doing all the laundry, and disinfecting everything. Bill made sure the yard was perfect. Everything was perfect. Maureen had baked a homemade cake and placed it on the kitchen table. It was just strange. I didnít feel like I was home. I looked at the calendar. The month was June. We had completely missed July. For some odd reason, I didnít want to change it; I didnít. Tiff went home to unpack the car. Rick and I only had a backpack and a small carry-on suitcase.

Isnít it strange that I had to pack things to go to my own home? I went through the box of medical supplies. I took some of everything. I took things that I didnít even know what they were. I just figured I had better have them with us Ė just in case.

I talked to Bill and Maureen, Jason, and Tiffany several times. Bill came over to see if we needed anything. Rick was at the kitchen table and I was about to get his meds. The cell ceft wasnít in his pill case. Oh no, here we go again with the cell ceft. I panicked. I ripped through everything. I knew I had it. I had just picked it up at the pharmacy that morning. Then I called Tiff. Would she check the back seat of the car? She ran outside and looked. She called back. Had I looked on the kitchen counter? She had placed the things she carried in from the car where I would see them. So far, I am not convincing her that I will be fine on my own. She has been gone twenty minutes and I am calling for help. The cell ceft was right where she had placed it. Bill and Maureen wanted to know if we had dinner planned. I donít have any plans. They offered to bring dinner. That sounded wonderful to me. I just had to call when we wanted to eat.

When Bill left, Rick went upstairs to take a nap. I had to test the pool. Iíd been hearing horror stories about how hot it was. I walked down the steps into water that was 94 degrees. I was in heaven. I was floating back in time to the first summer we had the pool. We had one long heat wave; I loved it. Every night Rick and I would go out to cover the pool. I would stop and say, "I just need to float for a little while." Eventually Rick would come out and say I had to get out. L The last few summers we havenít been able to use the pool very much. Right now the warm water felt so good on my skin. I could feel the tension and stress melt away. I felt the late summer afternoon sun on my face. I wanted to float here forever and drift back in time.

This was my first glimpse into the past. Constant company... Bahama Mamas on the back porch at night laughing with our friends. Floating in the pool with a glass of wine after everyone had gone home. Dancing on Wednesdays and Saturdays. Walking to the Farmersí Market on Saturday mornings for breakfast crepes. Strolling down Haddon Avenue in the evening to get custard. That summer had been idyllic. I honestly couldnít think of anything in the world that I didnít have. My life was perfect! This trip down memory lane is a luxury that is usually forbidden. I donít want to mourn the things that may never happen again. A short walk is okay, but one mustnít dwell on the past. I knew it was time to get out of the pool and return to the present.

I went inside and changed into SHORTS! I woke up Rick to see when he wanted dinner. He was very confused when I woke him. He didnít remember where he was. After he realized where he was, he calmed down. He was ready for dinner. I called Maureen. We would eat outside and Rick would eat inside. Jason had already arrived with Nicky. He is so close to Poppy. He didnít want us to ever leave again. He had to eat his pizza inside with Pop. I know he is afraid that Pop will leave again.

Dinner was wonderful. I hugged all the kids. I even had a glass of wine. It was delightful. Even Nicky wanted to come outside when he found out we were all going swimming. It was a dream come true. All the kids and grandchildren were there in the pool. Even Alyssa was having fun!

Bill, Maureen, and I had the opportunity to float in our rings and discuss everything. They understand so much because they have been down this same road with Tyler.

Speaking of TylerÖ. Rick asked Tyler to come inside and eat with him. He wanted to talk to him about the transplant. Tyler has never said much about his five years of torture and treatment. I understand not wanting to remember. I watched the two of them. It was like two old friends who had been drafted in the service. They had been shipped to different areas, but they were fighting the same enemy. They were two war buddies comparing war stories. We left them alone. Even Rick says he will never understand everything Tyler endured.

Rick came out to the pool while we were all swimming. We had all been watching a beautiful cardinal on the fence. He was chasing the neighborís cat. I watched Rick walk down the driveway. I tried to get to the ladder. I couldnít figure out where he was going. He was on his way back up the driveway before I was able to get out of the pool. I asked, "Where were you going?" He said, "I was going to look for the guard dog." I asked, "What guard dog?" We were all saying, "Look at the cardinal. He thought we were saying guard dog. He only stayed at the pool for a short time. He was just enjoying his first taste of freedom.

Dinner was so easy. Maureen brought it, served it, and cleaned up when everyone was finished. We went into the kitchen and she started apologizing for putting things where I might not find them. I stopped her. We were just so grateful for everything they have done for us. I wouldnít remember where anything was anyhow! I had been gone too long.

There was no food in the house. Tiffany came down with a pitcher of water. Our water cooler is in Baltimore. This morning (Saturday) I went to make tea for us. Iím very spoiled. I am used to filling the cup with hot water from our cooler. I would just have to use the microwave. I opened the door. Thatís strange. I thought we had a light inside. Oh well, who remembers? I closed the door. Something wasnít right. Then it hit me; it wasnít working. So far, this breakfast thing isnít going well. I donít even own a teakettle.

The rest will have to wait until tomorrow. I just realized it is 1:00AM. To be continuedÖ..

Sunday 10:00AM

Fortunately, I remembered how to heat water in a pan. Do we all know how dependent we have become on appliances?

I found some English muffins in the freezer and some butter. That would have to be breakfast.

Rick went back to bed for a nap. I played at the computer. I hadnít written my update yet. There was so much work that Tiff had to do to get the computers at home updated. My mind was so blank, I had no memory of Friday morning. When they finally got the laptop working I was able to read my last update. That is something I never do. I had no choice; I couldnít remember anything. The story about Geneva just made me laugh. But, then I remembered the pill incident and it all came flooding back.

Rick woke up from his nap and was very disoriented. He didnít know where he was. He looked at me and said, "I would like to go home. Do you care?" He was scared and anxious. I told him I would pack and we would leave as soon as he had some dinner.

Things were very wrong. We were strangers in our own home. We had no food. I didnít remember where things were. Even I missed our soft bed in the apartment. Worst of all, we were both referring to the apartment as home.

Bill and Maureen were still floating in the pool. I went out to tell them what was going on. They completely understood. They said the same thing would happen when we are released to our oncologists at Hahnemann. We will be afraid when the treatment stops and we leave our familiar settings with our doctors and nurses close by. I remember when he had been admitted to the hospital. He couldnít wait to get out. I didnít want him to leave. I felt so much safer in the hospital.

Tiffany had gone shopping and gotten things in for dinner and also for weekends Ė if we decide to return. She offered to make dinner. I declined; I was able to get us dinner. She had a cooked chicken in the fridge.

Rick decided he would like some rice with dinner. Apparently, Tiffís ideas of simple and my ideas are leap years apart. I looked at the box of rice. I already had the pan of water on the stove. I am used to throwing a bag of rice in the water. What was this? I had to measure things? I can read directions and cook; I am just very tired. I will take the easy way out if I can. Dinner was very good. Then, I had to clear the dishes. I have become so spoiled. I found all the dirty dishes. I loaded the dishwasher and washed the other things. I felt I had to leave the house as clean as it was when we had arrived.

Tiff was not happy with our decision. They wanted to drive us back or at least follow us. I promised we would be fine. As we backed out of the driveway, I asked Rick which way I wanted to go. Any confidence Tiffany had in me would be totally eradicated if I had to pull back into the driveway to go in the opposite direction. Once I was on the road, I remembered the way. I am fairly sure I would have found my way back to the apartment without any help. That was good news to me.

I will let you know how we manage on our first day alone.

Until tonightÖÖ

Love,

Nance

 

 

Friday August 4, 2006

 

Dear Friends,

Today was another exciting day in IPOP. For those of you who are still reading these crazy ramblings, you may remember last nightís episode with the cell ceft meds. By the way, I think I have been misspelling the name of the drug. Rick was out of that med as of Thursday night. As soon as I saw Audra in the IPOP, I asked for a new prescription. There were no refills on this prescription.

 

Audra was very alarmed. She said he should have the correct amount for the entire time he was supposed to be taking it. I could feel the heart racing, the lump in the throat, and the panic attack taking over. We had discussed this particular drug just the other day. I knew he had one to two weeks left to take it. All I knew was that I must have been overdosing him. Audra was already looking at his records and doing the calculations in her head. He should have forty-eight pills left. Fortunately, Rick is in the back having his labs drawn. I donít like him to see me going into a panic. I remember I am holding the label from the original prescription. We never found the bottle. The pharmacy in Hopkins is very different than the ones we are used to at home. I handed the label to Audra. She looked at the name of the doctor who had written the prescription; it wasnít her name. He hadnít ordered the same amount that Audra always orders. It is just a little too late to quell the panic attack. That will last for a while. Iím not a nurse; I know very little about drugs. The way I see it, any mistake could be a fatal mistake.

 

Rick is okay, but I have made several mistakes in this ordeal. I do keep track of these mistakes. I try to remember so I do not repeat them. I had forgotten to have the prescription refilled before he ran out. I had placed Thursday nightís pills in Friday morningís spot. What if it had been a Sunday and the pharmacy had closed? What if we had been in Jersey? Where was the empty pill bottle? (Now, you understand why Tiffany constantly checks the trash before she throws it down the trash chute!) There are too many scenarios to think about!

 

Rick was having a good time with Geneva. She was drawing the labs. She was still talking about her list of weekly treats. She told us the name she had decided upon. I will have to ask her again on Monday. I was still consumed with the cell ceft disaster.

 

I donít even remember what was said about the levels for the prograf. Rick may have talked to Audra while I was downstairs at the pharmacy. Most of the morning was a blur to me. I asked our nurse before we left about the doses of prograf and potassium. He will stop taking the potassium until further notice. He will cut back on the dose of prograf. Neither of us thought to ask questions.

 

We also had a new nurse today. One would think that after spending almost every day for the last six weeks in this place, we would have seen all the nurses. You develop a certain level of comfort and trust when you are with the same people all the time. Our nurse was very nice, we just didnít know her. Rick needed more mouthwash. He likes the mixture that Korinna makes for him. She was in the IPOP today; Rick just wasnít her patient. He asked our nurse if she would ask Korinna to mix it for him. She had no problem with the request. She gave him his bottle with a smile on her face and her special note on the label. I told him not to use it until I was able to take a picture of the label. The liquid drips down the bottle and the ink runs.

 

Today was also purple day. Korinna said she was wondering if I would remember. She was quite impressed. However, I had forgotten my camera. Rick took a picture with his cell phone camera of the two of us. If we can ever figure out how to get that picture to the computer you may see it.

Iím sure you are thinking, "Right!" I really promise Tiff will get the pictures posted on the web. Rick is too sick to think about the computer. I have no idea how any of this works. Tiffany never has a free minute. By the time they make it to the web, no one will remember the stories behind them.L

 

Rick thinks his legs may feel a little better. However, the hand tremors seem to be worse. I really notice it when he is eating or trying to hold a glass. It drives him crazy.

 

Tiff said she didnít remember seeing Rickís labs on my last update. I may have forgotten to post them.

 

Labs Results:     8/3        8/4

White cells        2490      3210

Red cells           3.61      3.51

Platelets            57         68

ANC                  1680     2090

 

According to Audra, he is right on target. That always makes him feel better. He feels so lousy that it doesnít help him for very long. I think I may have told you that he now understands why someone would decide to stop the treatment and go home. He is not going to do that, but he could understand why someone would choose to quit.

 

Last night Rick and I were all settled in bed ready to watch So You Think You Can Dance. Yes, we have become couch potatoes. I think it may be more like bed potatoes. It has only recently occurred to me that we have been in some type of treatment for the last couple of years. Television is about the only activity Rick has been able to enjoy. We have watched more television in those years than we have in the entire time we have been married.

 

Ellie was in our room talking to me. She was telling me about her necklace that she had bought in the Inner Harbor. I was fine with this. Tiff came to the door and told Ellie she had to let Meemie and Poppy watch their show. Ellie left and I could hear her crying. She was asking why we loved our dance show more than we loved her. I went out to play with her. I felt it was a legitimate question. The answer was quite simple; I didnít!

 

I have never forgotten an evening in 1972. My grandmother, who was ninety, had come to baby-sit Tiff and Jason. We had come home and we were waiting for my parents to come pick her up to take her home. She had lived with my parents since my older brother had been born. She was trying to talk to me and I wanted to watch this movie on television. I pretended to listen, but I was trying to hear the movie. I even remember being annoyed. Mt grandmother became ill not long after that night. I wished I could have had that night back to change it. I decided that I would never allow anything to come before time with family or friends. The decision to forget the show and play with Ellie was easy.

 

We were playing on her bed. I must admit she was jumping on the bed and I was encouraging her. I love to hear her laugh. I am a grown-up when I have to be, but a child when I can be. The next thing I knew, she was rolling off the bed. I tried to catch her. She hit the floor and was part way under the bed. I could see she was crying. Tiff came running. She managed to pull her out and pick her up. I was worried something was broken. She buried her face in her Mommyís neck. I could see her hands and toes moving, so that was a good sign. When Tiff finally got a look at her, there was a huge lump just under the outside corner of her eye. Oh no, her first shiner and it was all because of her Meem! She finally calmed down. We were able to get her to put our soft cloth ice pack on her face. Once again in my defense, if I were feeling better I would have been able to catch her.

I donít think either of us remembers what it is like to be healthy. Rick has not felt well for at least two years. I remember starting with doctor appointments in January. I do remember that I missed the end of the school year. I spent the days in pain curled up in a ball on the couch. Now, I have a few good days and then the pain returns. We are both very weak. It took both of us to open a pack of crackers. Neither of us had the strength to pull the waxed paper apart on the end. It took a while, but we did finally get them open. I really canít blame Tiff for worrying about us being on our own.

 

The heat wave is supposed to break. I will try to get Rick out for a walk. I forgot to ask Audra how far away from the construction he must be before he can remove his mask. Walking outside in this heat wearing that mask is just too uncomfortable for him. We will get there!

 

Thanks again for all of your letters. They keep us laughing. We have kept every card and we will have Tiff print a copy of all the letters on the guest book. Sometimes, we go back and re-read the letters. They have brought us great joy. Thank you!

 

Until tomorrowÖÖ.

 

Love,

Nance

 

 

Thursday August 3, 2006

 

Dear Friends,

 

Today was really a short day in IPOP.  He just received fluids.  We will get his lab results on the prograf tomorrow.  For tonight, he will only take one of his pills.

 

Audra is fairly sure that the prograf is causing the tingling in his legs and fingers.  That is a very common side effect.  His potassium levels were high.  Tonight he doesnít have to take the potassium.  That was really good news.  He hates that pill.  It is very big.  I give it to him at lunch.  It is usually still there for dinner.  He finally takes it after he has finished dinner. 

 

Audra also told him that he would be off the cell ceff in one to two weeks.  That really made him happy.  They are large gray pills.  He has to take two of them three times a day.  He can only put them off for so long.  He must space them out.

 

His arm has bothered him less with the oxycodone ER.  This is the lowest dose of oxycodone.  He takes one tiny pill every twelve hours.  Audra hasnít heard back about his physical therapy.

 

One thing that still bothers him is hand tremors.  Both his hands shake so much.  I think that is a side effect from one of his meds.

 

Tiffany and I were discussing how much better he felt after the fluids yesterday.  We thought it would be a great idea if we could give them at home.  After giving the antibiotics for so long, it sounded pretty simple to us.  Not so!  That would take calls to the insurance company about a home nurse.  I asked if it made a difference that we had an R.N. at home.  Nope!  I can administer strong antibiotics, but not just simple saline?

 

I asked Audra about the saline and heparin.  She said this was the only place she had worked where they just used heparin.  She did not feel that heparin alone flushed the lines enough.  I will stay with my original routine.

 

Sorry I ended so abruptly last night.  I was in bed by dinner.  Tiffany brought us both dinner in our room.  Rick was trying to take care of me.  This is a sad situation; the patient is caring for the caregiver! J  We will really be prepared for old age.  I felt much better this morning.  I donít even know how Tiff ended the update for me.

 

We were having so much fun in IPOP today.  Geneva takes all the vitals and draws the labs for all the patients.  When we sit in the recliners in the back, we are right next to her.  She is a real trip.  Iím not sure how we got started today, but we were discussing the need for some fun.  I mentioned the color days.  From there we went to food.  We were on a roll (that was totally unplanned!).  We came up with Muffin Monday, Tasty Cake Tuesday, Wing Dings and Wild Fries Wednesday.  I think you can get the idea.  I got out paper and began writing them down for her.  We had a pretty decent list when we were finished. 

 

Kim is the receptionist for scheduling IPOP and HIPOP.  She sits at the desk outside of the A wing.  She is a real sweetheart.  If she doesnít see us when we arrive, she comes back to IPOP and we always get hugs.  I would guess that she is in her twenties.  Her job is very stressful.  I have witnessed many of the stressful things she deals with all the time.

 

Today when we left, Geneva was out at Kimís desk reading our list to her.  Even before she spoke, I could easily read the look in Kimís eyes.  ďWho is going to organize this?  Who will be in charge?Ē  Geneva made it sound so simple.  People would just sign up for the dayís food.  Maybe it could be two people.  I was just glad she didnít tell Kim who had helped her with this.  Then, she announced that IPOP needed a name for themselves Ė something catchy.  Kim said, ďHow about IPOP Elite?Ē  Geneva thought about it.  Kim just said, ďIíll work on it.Ē

 

Apparently, Tiff does read the updates sometimes.  Tonight at dinner she told me she had organized the freezer.  Now the sherbet is in the front and easy to remove.  I always seem to make more work for her.

 

Tonight was also filled with surprises.  I took Rick his pills for tonight.  He asked, ďWhereís the cell ceff?Ē  I couldnít find it anywhere.  I try so hard to make sure there are no mistakes with meds.  How could I run out of his meds and not have refilled them?

 

Only this morning, our nurse wanted to review his meds with us.  Fortunately, I had recently updated my list.  They have made so many changes.  I listed his meds in two ways.  The first list had them in the order in which he took them each day.  The second list had each of the meds and the total daily dose he took of each one. 

 

This was worse than taking a final exam.  When I returned to college after I had my kids, I became an over-achiever.  Nothing less than an A was acceptable.  Mary Ellen was checking and I am sure she shook her head.  I had a lump in my throat.  If this was not an A, it could mean serious problems in Rickís recovery.  Finally, she said, ďThis looks good.Ē  I was so scared; this is Rickís life in those pills.

 

Now, he is out of cell ceff.  I pulled out all of his meds.  I thought I had been so organized.  All of us began searching.  We looked everywhere two or three times.  I even found my little notebook.  I had a note that I would be out of cell ceff on Friday.  Tiffany then asked why he had run out on Thursday.  That was a good question.  Somehow, I had placed his last two pills in Friday morning instead of Thursday night.  Problem solved; Rick had his meds.  However, this still scares me because no matter how you look at it, I made a mistake.  It is a good thing we keep checking everything we do.  I was just happy that it all ended well.  I told you our days are always filled with surprises.  Some are good and some not so good. J

I must run.  Rick would like a snack; it helps with his meds.  Thank you so much for all of your letters in the guest book.  We will never be able to put into words what they have meant to us.  They give us the strength to keep on going.

 

Until tomorrowÖÖ.

 

Love,

Nance

 

 

Wednesday August 2, 2006

 

Dear Friends,

 

We are finally home from another ďshortĒ visit at IPOP.  Itís close to 2:00PM. 

 

Rick has something called BK virus.  It is causing the urinary problems.  There is no cure for it.  It will just have to resolve itself on its own.  They told us it could take several weeks to several months.  Meanwhile, he is getting up every thirty minutes during the night.  Yes, we are both really tired!

 

Audra is trying to arrange for physical therapy for his right arm.  She does not want it to freeze up on him.  He has a tear in the rotator cuff.  Our insurance will not send someone to our apartment because we donít actually LIVE here.  I would love to know what we are doing here.  I thought I was living here.  He may have to go to the hospital now for the physical therapy.  Iím not sure how that will affect our days off.  L  If it is something I can do, we will be doing it at home Ė this home!

 

Rick mentioned the tingling in his feet, lower legs, hands, and just above his wrist.  They think they may have to adjust his prograf meds.  We have to go back to IPOP tomorrow for lab tests.  We may find out what is going to happen with the physical therapy also.  So much for Thursday off.

 

We were longer than we had planned in IPOP today.  They decided that Rick should receive fluids.  There were several reasons.  One reason is the heat.  I already knew he wouldnít be going out this week.

 

His counts look great!

 

Last night I told Rick that I was going to ask Audra about going home for weekends.  He doesnít like surprises.  That in itself begs the question Ė Why in the world did he marry me?  My life is just one surprise after another.  I remember a comment he made some time after we had been dating.  He said he had always wondered (when we were in high school) what I was like all the time.  Was I different than the girl he saw at school and on dates?  He told me that he found out that I am the same all the time.  Maybe he just doesnít know he loves surprises.

 

Back to the important question.  He told me last night that he wasnít ready to go home.  I asked him why.  He told me that he was too scared to be that far away from his doctors and Hopkins.  I understand that completely.  We will wait until he feels ready.  At least he has the option.

 

Last night was one of our crazy nights.  Actually, I guess, most of our days and nights are far from normal.  I had to flush Rickís lines before he got his bath.  He said goodnight to all the kids, and we went into the bedroom.  I went to ďthe boxĒ to get the saline and heparin, and alcohol wipes.  I was out of the heparin the nurses had been sending home when Rick was on the antibiotics.  This was the first time I had to use something from the box.  I remember the first day we were here, the nurse made us go through all the contents in this big box.  It was all there; I just didnít know what the things were.  I did know I had seen the saline and heparin.  I pulled out the bag with the heparin.  They really should not change the looks of the meds you use.  Also, I noted that I had lots of saline.  I only had about half that amount of heparin.  Before I did anything, I went out into the living room to tell Tiff about the heparin.  She has already received two calls asking if we need more supplies.  I will check the box this afternoon.

 

I went back into the bedroom to flush the lines.  The first one was easy; I still had the heparin from IPOP.  I started the second line.  The saline was simple.  The heparin was a very different story.  I couldnít get the handle part to move, so I can release any air bubbles.  It was stuck.  I had to ask Rick to hold the cleave with the alcohol wipe around it, so I could use both hands.  Next thing I know heparin is squirting across the room.  Itís all over the nightstand.  Well, thatís no good.  I went to get another heparin.  This time I took it into the bathroom to try to get the air out of it.  This time the heparin went squirting into the mirror and all over the sink.  All I could do was laugh.  I went to the door, opened it, and called to Tiff, ďWeíll definitely be needing more heparin.Ē  I got another tube of heparin out.  Rick thought he remembered someone saying something about pulling back on the handle before you try to release the air.  The ones I have been using since we arrived here do not work like that.  Well, I listened to Rick and this time it worked. 

 

Flushing the lines is a rather simple procedure.  For me, however, with my needle phobia, it is traumatic.  I have my routine.  I turn my mind on to autopilot.  I cannot think about what I am doing.  I have to hold the saline and heparin so they donít remind me of a syringe.  I watch the contents and his face at the same time.  If he makes a face, I stop and ask if I am hurting him.

 

Today Rick asked the nurse if she would flush both lines.  She came over with one saline and two heparins.  I told her I had been using both for each line when he isnít in IPOP that day.  She told me I only have to use heparin.  Any medical experts out there know who is right?  Iíll be asking Audra tomorrow.  The nurses have all been very nice and we like all of them.  I just donít think they realize that many caregivers are not nurses.  Taking care of someone who is very ill is frightening.  I feel like Rickís life is in my hands.  What if I make a fatal mistake?  Is it any wonder that we get out his list of pills all the time and double check what he is taking.  Iíve already spent an hour filling the pill cases Ė checking and double-checking.  This isnít Tylenol he is taking.

 

I had asked Tiff to close for me.  I was in quite a bit of pain and just couldnít finish. 

 

It is now 7:30AM and we are getting ready to leave for the hospital.  We do seem to take turns with health problems.  Iíve already started the morning with two Tylenol.

 

Yesterday he told Audra he had read in the consent papers that one could choose to drop out at any time. However, they stated the severe consequences without the necessary follow up treatment.  He wondered why anyone would so that.  He now understands why.  He has been so discouraged.  You just want to stop taking all this stuff that is making you so sick.  Audra is very good.  She understood everything he was saying.  He left the hospital feeling much better.  By the end of the day he even looked better.  However, I was the one in bed before dinner.

 

This morning I am doing better.  I had been cheating on my diet.  I knew those cheese muffins would finally get me.  I had lifted Alyssa several times.  The excitement of seeing the kids also adds to the emotions.

 

I will ask Tiff to post his lab results.  I must get ready to leave.

 

Until this afternoonÖÖ..

 

Love,

Nance

 

Lab Results:

 

                        7/26         7/28 (Fri)         7/31      8/2

White cells               4800         4150               4380      4570

Red Cells                  3.46         3.48                 3.74       3.91

Platelets                   13            14                    26          58

ANC                         4128        3190                 2800       3170

 

 

Tuesday August 1, 2006

 

Dear Friends,

 

So much for my great ideas yesterday.  I knew my timing was bad when I listened to the weather report.  We are in the middle of an extreme heat wave.  It is suggested to stay indoors.

 

I donít think it would have been successful anyhow.  Rick had a very bad night.  He was up and down all night.  I would waken every time he got out of bed. 

 

Thirty minutes later!ÖÖ..  The wash finished while I was typing.  I jumped up.  I figured I would throw the first load in the dryer and add the second load to the washer.  Just a few minutes, right?  If I find one more Kleenex in the laundry, it wonít be the transplant we will worry about!  I had to shake every piece of clothing.  And, of course, the only place to shake it is in the living room where the washer and dryer are located in a closet.  Then, I had to run the vacuum cleaner.  Then, I had to pull out half the stuff in the hall closet so I could put it back.  Tiff had warned me about the Kleenex.  Really, I checked everything.  That would be everything except his fleece hoodie.  I had told him last night that I was going to wash it.  I didnít notice the front pocket.  Here is that time obsession popping up again.  I have great difficulty wasting time on things that could have easily been prevented.  Okay, back to my calm self..

 

I donít think Rick is feeling well.  They did a urinalysis on Friday.  Audra mentioned something about some urinary virus he had.  Antibiotics wonít help it.  We will have to ask more on Monday.  

 

Last night I told Tiff that I was going to ask Audra if I could take him home for weekends.  We could leave right after his Friday appointment and return Sunday evening. We both thought it would help.  We are both concerned that he may be getting depressed.  It is not easy to tell.  I have never seen him depressed.  Therefore, I believe that he really feels sick.  After the night he had and seeing how he feels now, I wouldnít attempt to drive that far with him.  In fact, if I asked him right now, I know he would tell me he couldnít make the trip.  I will still ask Audra on Wednesday.  I think it would be something for him to look forward to.

 

I think Jason and AJ were surprised to see just how weak and tired he looks.  We are here every day, so we are used to it.  He was too tired to spend more than a few minutes watching the kids play.  I know how much he enjoyed the hugs from Nicky.  Pop gets down on one knee.  Nicky stands right in front of him and looks right into his eyes.  He has so much to say to Poppy.  He also keeps hugging him.  He and Poppy play a lot at home.  They both miss it.

 

The kids keep asking why Poppy is sick.  When will he get better?  When can we come home?  How do you explain leukemia to four year olds?  Once Alyssa got used to the mask, things returned to normal for her.

 

I have decided that I have to start doing things to take Rickís mind off of how sick he feels.  Last night while I was lying in bed I thought about our country line dancing.  I thought we would start slowly.  This morning when I told Tiff about my idea, she thought it was great.  She offered to move the coffee table out of the way.  She said Ellie would love it.  However, I can see that he is not strong enough for that one just yet.  We will get there!

 

I need to find something engaging.  I want to take his mind off of the pain.  I also have to remember that he canít use his right arm.  I think I will have the kids look for a backgammon game, checkers, and scrabble.  If anyone has any suggestions, please let me know.

 

Rick says he hates the nights.  He keeps looking at the clock hoping it will be time to get up.  I found him on the couch at 7:00 this morning.  I just got up and made breakfast for us. 

 

He is researching some of the meds that he is taking.  So far, he has found two that can cause pain and actual tearing of the tendons.  Most of them may cause intestinal problems.

 

Jason and AJís check-in at the Marriott was quite the adventure.  They had requested adjoining rooms away from the construction.  They do not make any promises for any rooms.  Tiffany called in the morning to see what was available.  She called after they had arrived to find out if the rooms were ready yet.  They told her they should be ready by 1:30.  Check-in isnít until 3:30.  Tiff and AJ took Nicky and Ellie swimming at the hotel.  Jason went over to the hotel with Alyssa when she woke up from her nap.  The girls went to get the keys.  Jason got the van with all their things.  They had everything in the room.  It was then that Tiffany opened the curtains.  She was only a side streetís distant from the construction.  She and the construction men were face to face.  Jason said, ďCall the front desk.  Tell them we want our original rooms.  I am not staying here!Ē  These two rooms had been ready earlier.  The person at the front desk was very accommodating.  They just had to return the keys and pick up the new keys.  The only problem was that Nicky had taken off his wet bathing suit and his clothes were packed in the suitcase.  All he had on was his tank shirt.  Tiffany tried to tell Jason that the shirt covered him and they were only going upstairs on the elevator once AJ returned with the new room keys.  Jason finally gave in.  Nicky went running down the hall to the elevator.  All was fine until he reached up to push the elevator button.  J  They all survived and got settled in their new adjoining rooms on the opposite side of the hotel.  They found earplugs and a note of apology in the room.  I am sure that the hotel personnel are painfully aware of the noise.  They even state the time the work begins and usually ends.

 

Rick just asked for a bowl of sherbet.  He really enjoyed it last night.  I know it sounds like such a simple request.  However, one would have to see our freezer (and refrigerator) to understand why my blood pressure seemed to be rising.  I open the freezer door.  It is packed, not just packed, PACKED.  At least the sherbet is in the front.  Unfortunately, it is holding other things in place.  I am catching things right and left.  Finally, I manage to drop the sherbet to the floor.  The door has fallen back until it has hit the cabinets.  I try my best to pack everything back into the freezer and also get a hold of the door.  I slam the door closed as quickly as possible and pray that it doesnít open.  Mission accomplished!  I get his sherbet ready and take it into the bedroom to him.  Then I return to the kitchen to put away the sherbet.  It was then that the error of my ways hit me.  I had to open the freezer.  I opened it very slowly anticipating things falling quickly.  I was right.  It took some maneuvering, but I finally had everything back in the freezer.  By the way, I had to do the same thing just now.  Rick walked out just as I was dropping the sherbet container to the floor.  He wanted to know what I was doing.  ďJust getting you a bowl of sherbet.Ē  Some things you just have to accept!

 

By the way, Tiff mentioned to me today that she only edits things about her.  Apparently, if she took out the crazy stuff, she didnít think there would be much of an update.  I donít think it occurs to me that people are reading my inner most thoughts.  I am not worrying about verb tenses, fragments, run-on sentences, paragraph contents, or making sense.  I am wondering if I may regret this entire journal.  I guess it is too late for that now. 

 

I must get dressed and go get Rickís Inquirer.  The kids are all at Port Discovery for the day.  I am afraid that we have both been very lazy.  We went back to bed when they left this morning.  We woke up about noon.   Neither of us had much sleep last night.  

 

3:00PM   Guess where I have been.  Iíve been out in the city.  Rick asked me if I would get his Inquirer.  I decided to wash my face, find my make-up, and look for one of my shorts outfits.  I even put on lipstick and found my sandals!  I looked in the mirror and almost recognized myself. 

 

I walked outside and into the heat.  The sun felt good on my arms.  The heat was a welcome friend.  I thought about being home and floating in the pool.  I would make a big pitcher of virgin pina coladas with ice cream.  We would just float in the pool and listen to the kids having fun.

 

I went across the street to the news store.  She saves a paper for us every day.  We just buy the back issues if we miss any days.  I had only taken my keys and a dollar. 

 

Rick asked me to pick up any magazines I thought he might like.  I said to him that I would never have thought of the ones he had asked me to buy earlier.

 

Today I had my first real conversation with someone outside the hospital.  I asked the young woman who is also the owner about suggestions.  She remembered the magazines he had chosen the first time.  She made several suggestions.  I told her I would be right back with money.

 

I ran back to the apartment and told Rick about the magazines.  I grabbed money and left.  Jason had called to tell me that Alyssa had just gotten up from her nap.  They were headed back to Port Discovery.  They met me in our lobby and he went to the store with me. 

 

I chose several of the magazines I thought he would like.  Then I noticed all the newspapers from around the world.  I said to Jason, ďWait a minute; I have a great idea!Ē  He just looked at me and said, ďGreat, Mom.  Get Pop a paper in a different language.  That should really keep him busy and drive him crazy!Ē  I was looking for a paper from Great Britain.

 

Rick taught History for 35+ years.  He had always wanted to read a history book from England.  He wanted to read about their version of the Revolutionary War.  I couldnít do that, but I could show him how Britain is reporting the news.

 

It was fun shopping.  When he feels better, I will take him to the store to look at the many magazines and papers.  It felt good to look at people and have a conversation.  Usually, I avoid looking at anyone.  I am painfully aware of how tired and exhausted I look; it is very embarrassing. 

 

I would hide behind my sunglasses, but I canít see out of them.  Jason rushed me to Lenscrafters right before we left to come here.  I didnít wear them on the trip down because we drove through blinding rain.  The first time I put them on; I realized I couldnít see out of them.  I will have to go back when we get home.  They have a store in Baltimore, but trying to find it and the time to go are just too much for me.  Besides, my eyes are so blurry, I wouldnít be sure of anything right now.

 

8:00PM:  We have had a relaxing day.  Rick is feeling a little better.  We are waiting for the kids to return from the harbor.  They all had fun at Port Discovery today.   It is also bath time.  I think we are on our way back up!  Weíve been in the doldrums too long. 

 

Until tomorrowÖÖÖ..

 

Love,

Nance

 

 

Monday July 31, 2006

 

Dear Friends,

 

Much to your relief, this may be the shortest update Iíve ever written.  Jason, AJ, Nicholas, and Alyssa have arrived.  Jason is putting Alyssa down for her nap on Tiffany and Ellieís bed.  I just finished getting Rick something to eat.  The others have gone across the street to the hotel to swim.  Their rooms are not ready yet.  This is a race against time!

 

Rickís visit went very well today.  We talked to Audra about how he was doing.  Everything is right on target.  She said there would be an end to some of the meds.  A few he will have to take for a year.  The counts are doing just what they are supposed to do.  The MRI indicated possibly tendonitis.  He will have to see an orthopedic doctor, but not until his counts are much better.  He didnít need blood or platelets today!  We were home early.

 

Lab Results:

 

                        7/25         7/26         7/28 (Fri)         7/31

White cells               1380        4800          4150               4380

Red Cells                  2.74         3.46         3.48                 3.74

Platelets                   22            13            14                    26

ANC                         1076        4128         3190               2800

 

Nicky ran right up to Pop and hugged and kissed him.  He felt what is left of his soft hair.  Alyssa waved, but kept her distance.  I think the mask frightened her.  I think she will get used to it before long.  Rick was just too exhausted to move off the couch.

 

We asked Audra if she knew when we could go home.  If we lived near Hopkins, she said they would let him go home now and just return for appointments.  Unfortunately, New Jersey was a little too far.  We will stay until day 60; I am not sure of that date.  Unless there are complications, that is the release date.  They will also do the bone marrow biopsy on day 60.  I am sure we had been told they might do one on day 30.  I may try to go home on a Friday when Rick is feeling stronger.  Weíll make sure Frankie is making lobster stuffed ravioli that weekend.  We would drive back Sunday night.  I wonít tell him this until I think he is stronger. 

 

They arrived about noon.  Rick was sleeping in his recliner.  It wasnít long before the kids were playing hide and seek.  The big kid Jason was hiding.  The three little kids Ellie, Nicky, and Tiffany were seeking.  (Iím sure that Tiff will add: I was playing because Jason was scaring them and it was the only way they would enter the bedroom.)  Yes, that part is true.  They were squealing with laughter and screaming.  AJ decided to hide the last time.  Tiffany went into the bedroom to help her.  They squished her into the laundry basket and put a blanket on top.  It was great until she couldnít get out.  We have some great pictures!

 

Rickís recliner is only a few feet from the door.  He never heard anything.  I had to waken him about 1:00, so he could see them before they went swimming.

 

I am still concerned about how tired and weak Rick is feeling.  I have him listening to the CD on fatigue.  I can see him from where I am sitting on the couch.  My guess is that he is already asleep.  Neither of us seems to be able to stay awake for any of the CDís.

 

I donít think Rick will lose all of his hair.  It hasnít changed in several days.  The first few times I washed it, I couldnít rinse the hair off his back.  Now, I donít find any hair falling out.  The good thing is that it is much easier to wash his hair.  Weíve tried all different ways.  Rick is very weak and canít use his right arm.  He hates water in his ears.  He canít bend his head back very far.  He holds a towel across his face and both ears.  I also have to be careful not to get the hickman patch wet.  I cover that with another towel.  Meanwhile he is in a tub filled with water.  I use a cup filled with clean water from the sink to rinse his hair.  So, I have water from the sink to the tub, water all over me, and several soaked towels.  But, he doesnít have water in his ears, on his face, and his patch is dry.

 

Jason brought us a new showerhead the last time he came down.  I wanted one that we could take down.  I thought it would be easier for Rick.  I could also wash my hair with it in the morning.  Rick is just too weak to take a shower.  The first time I tried to wash my hair, I dropped the showerhead and soaked the entire bathroom.  I just get a shower a night and wash my hair.  Iíve given up make-up, so I donít know why I worry about my hair.

 

Did I tell you they color theme days in IPOP?  I love theme dressing.  Fridays the nurses from B wing wear purple.  Mondays they wear blue.  On Wednesdays, the nurses have Wacky Wednesday.  They all have the same shirts.  They are Pepto Bismol pink with wild colors all over them.  I am doing purple and blue day.  I donít know how to dress for Wacky Wednesday.  Isnít it great?  Our appointments will be Mondays, Wednesdays, and Fridays!

 

Last night Rick and I laughed about how much the air filter system bothers him.  I told him that I had already used that in my updates.  He is always freezing.  He knows that it isnít making the room colder, but he feels like it is.  Iím glad he isnít upset with the secrets I disclosed.

 

Last night Tiff downloaded the pictures from our camera.  We were almost late for his appointment because we were sitting here looking at them.  When Rick saw the pictures of him in the hospital bed receiving his transplant, he had no recollection of it.  I think we will both be surprised when we finally read the updates.  Most of the days are a blur.  Hopefully, we wonít be too embarrassed.  I have been hoping that Tiffany would delete anything really crazy.

 

Good newsÖ.Rick, Jason, and Alyssa are all up.  Alyssa is fine with Poppyís mask.  It didnít take long.

 

We have lots of adults down here.  I may really celebrate and have my first glass of wine!

 

Until later or tomorrowÖÖ.

 

Love,

Nance 

Sorry, Iím back.  6:30 PM -   Rick is talking to his mom and the kids walked to the harbor.

 

Rick went for his first outing tonight!  We all walked together.  I had decided that he needed to get out.  Donít worry; he was in the wheelchair.  We took the camera so we could get a picture of his first walk.  I planned on taking a picture of him with all the kids and the harbor as a beautiful background.  Next thing I know, Tiff is asking some woman to take our picture.  I started telling Tiff I didnít want to be in the picture.  I had no make-up on and my hair was a mess.  Tiff said she hadnít had time to get ready for a picture either.  Meanwhile these two women are standing there listening to us argue about who will be in the picture.  After the picture was taken, I grabbed the camera and took two pictures without me.  However, when they make it to the web Tiff will be in control.  Iím guessing I sill see me in the picture.

 

I think I chose the hottest day of the summer.  But, it was time.  We both have shorts on!!!!!!!  He really enjoyed getting out.  He hadnít wanted to go when I suggested it.

 

He finally decided to turn around and come back.  We had walked for some time.  However, he wanted to walk up a block away from the harbor.  Tiffany started telling us to stay next to the water.  She didnít want us (really me) near any streets.  He was determined on the direction in which he wanted to go.  I just waved at her to let him alone.  She gave up and just said, ďCall me as soon as you are in the apartment.Ē

 

We headed up the street.  Ahead of us was a major intersection.  I had no intention of trying to cross it.  I did ask him if he wanted to cross this street.  No, he just wanted to see if he could see where the Office Max was.  I told him we had no money with us if he was planning on shopping.  No, he just wanted to see where we were.  I think it was just at this point that I ran into the pole.  I really just grazed it.  No harm done.

 

We walked another block and returned to the harbor walkway.  This was good for me.  I was pretty sure I would recognize our apartment building when we arrived.

 

While we walked we talked about the boats and reminisced about the houseboat we once had.  He happened to notice one for sale.  It looked a little too familiar for me.  I could feel myself breaking out in a rash just thinking about it.  He did say that I had been a good sport about it.  He loves the water.  I like the water and I like boat rides.  I just donít want to spend the night on one.  I donít want to stay anywhere they donít have indoor plumbing just like my home! 

 

One time we attempted to take this boat to the Chesapeake.  Cleve and Maureen Bryan came with us.  Cleve is an expert with boats.  I think they all had fun.  The first night we stayed in a little inlet.  I was heating drinking water.  Cleave asked if I was making tea.  I told him, ďNo, Iím heating water to wash my face.Ē  He said something about this was water for drinking.  I remember saying something about not washing my face with water that was in some tank under the boat.  The boat slowly fell apart as we traveled.  We had to dock it in some little marina and get a ride back to Jersey.

 

He also had a camper when we were first married.  It was parked outside next to our garage.  The first time I saw the inside of it was the day the person came to take it away.  It was sold. I stayed on the boat, but I couldnít bring myself to get in the camper.

 

Okay, I really just wanted to tell you that Rick had his first outing.  I am going to try to take him out every evening.  Except for the one time I almost threw him out of the chair, it was the perfect evening.  Oh, we did meet a neighbor from the 9th floor.  I almost knocked him down when we were getting off the elevator.

 

I am going to get Rick a bowl of sherbet and I am going to have that glass of wine!!!  J

 

I promise this timeÖuntil tomorrow

 

Love,

Nance

 

 

July 30, 2006, Sunday

 

Dear Friends,

 

Itís 1:30PM.  Tiffany and Ellie are headed to the pool.  Rick is sleeping in his recliner.  I should take a nap, but I may not be able to type again today.  We havenít come up with a new routine.

 

Rick has not felt well for the last two days.  He has not had a fever; that is good.  However, he is really tired.  He was able to go to table for breakfast.  However, he has stayed in his recliner for his other meals.  He just has not strength or energy.  He is also experiencing some sinus pain.  I feel so much safer when he is in IPOP every day.

 

This morning was quite the ordeal.  Itís pill day.  That is always an hour.  However, I had a question about one of his meds.  I wrote out a list of list of his pills showing when he took them.  Then I made a second list showing just the list of pills and how many he took each day.  Tiff called IPOP.  One of the nurses went through the entire list of pills.  It is very difficult keeping the meds correct.  They change them constantly.  Some are eliminated; some are decreased, some are increased, and still new ones are added.  I never know when Audra may stop to visit him.  Sometimes, I walk in while she is telling him about his meds.  I quickly get out my little notebook.  Today I also had to make a list of prescriptions he will soon need refilled.  Most do no have refills.  After the list was finished, I went to the empty prescription bags.  Some are refillable; others I will have to have Audra write new scripts.

 

 I do have a system.  As soon as I come home from the hospital, I make any changes in the pill containers.  If he no longer takes a med, I place it in a separate bag.  My vitamins are in another bag.  Non-prescription pills new needs are in another bag.  It works; it is just very time consuming.

 

Before I forget again, here are Rickís labs from Friday:

 

 

                       7/24         7/25         7/26         7/28 (Fri)

White cells        1370       1380        4800         4150

Red Cells          2.80         2.74        3.46         3.48

Platelets           8              22           13            14

ANC                 1206        1076        4128         3190

 

I have found a routine that helps me sleep.  I am now getting through The Rosary and still awake.  I put the headset on and listen to the CD on stress.  I though I hear the entire thing the other night.  But, now I think I was asleep and didnít know it.  I donít remember anything after the first few minutes.  When Rick wakes me up when he gets up to use the bathroom, I just reach for the CD player, put the headset on, and run my fingers over the top of the player until I find a button to push, Within seconds the haunting musical notes are floating in my head.  I remember nothing.  This goes on several times during the night.  I do hope she is giving good advice!

 

Last night Ellie came in to say goodnight to us.  She had just had her hair washed.  It smelled like sweet, ripe strawberries.  We each received hugs and kisses.  Then, she said she would miss us.  She explained that she would like it better if our bedrooms were right next to each other.  They are separated by the living room.

 

This morning Tiffany said that she was going to wake her up.  She couldnít take another late night.  Ellie is a night owl.  I asked if I could get into bed next to her to wake her.  I climbed into bed and fell asleep next to her.  The next thing I knew flashes were going off.  Tiffany was taking pictures.  Her hair still smelled of sweet strawberries.  I was reminded of a mare with her foal as I nuzzled her little forehead and hair.  The look on her face was so cute when she woke up and saw me.  However, her first question was, ďWhereís Mommy?Ē  As soon as she saw her sitting in the chair in the living room, everything was okay.

 

I woke up this morning and didnít know where I was.  I looked around the room and was confused.  This was the first time this had happened.  All I could think of was Ė Youíre not in Collingswood anymore!  However, the journey ahead of us is just as scary.  The other difference is that I live in color.  When I leave our apartment or the IPOP, everything is black and white.  The wicked witch is the leukemia.  Her little monkeys are the germs that we are constantly trying to avoid.  We donít need hearts.  However, we are always looking for courage.  I think we could all use new brains; our brains are fried!  We canít wait to sing, ďDing, dong the witch is dead!!!!!Ē  Sorry, I just drifted awayÖÖ

 

Last night I made Rick a piece of toast.  Tiff hovers over me when I go near the kitchen.  I told her I was doing fine.  I had had a little incident with the toaster earlier.  I couldnít get it to work.  I kept plugging it in and it wasnít getting hot.  I kept pushing the little reset button and nothing.  I was about to move it to another socket when I noticed my problem.  I had been plugging in the blender.  I told her I hadnít had any more problems with the outlets and plugs.  Her comment was, ďDid you notice?  I have wrapped the blender cord around the base so you donít try to plug it in again.  To make matters worse, the piece of toast was stuck in the toaster.  Under her watchful eye, I unplugged the toaster, and used a plastic fork to remove the toast.  She told me she knew it would be stuck when she watched me squish it into the toaster.

 

I am trying to convince her to take Ellie and go home to enjoy what is left of the summer.  She tells me that I am not making a good case for being left alone.  I thought I had done quite well yesterday.

 

Jason and AJ are coming down tomorrow with the kids.  They will be here for three days.  We will be thrilled to see them.  We havenít seen Alyssa and AJ since June 25.  We are hoping Popís loss of hair does not frighten them.  That would be crushing for Pop.  He is already worried because he has no strength to play with them.  He has spent most of the last two days in his recliner.  I am thrilled that Tiffany and Ellie will have some company.  She and Ellie will get to do some fun things.

 

Last week, Rick was trying to figure out how he could get Frankieís Lobster stuffed ravioli down here.  Frankie owns Briannaís on Haddon Avenue in Collingswood.  That is Rickís favorite dinner.  I promised him that I would order it for take-out as soon as we were home.  With the exception of Thanksgiving and Christmas Day, I have Frankie make all of our holiday meals.  I have been too tired since Rick began treatment two years ago.  It is so easy; and the kids love Frankieís cooking!  Iíve become quite spoiled!

 

Jason told me last night that Nicky missed Meemieís waffles.  According to our calculations, Ellie was telling me the same thing at the same time.  We have a Saturday morning tradition at our home.  I make homemade Belgium waffles, with melted butter, warmed syrup, and whipped cream.  Itís a great way to begin the weekend!  We miss it too!

 

Hopefully, today will be an uneventful day.  I am going to do some wash and check on Rick.  If things work out, I may return later today.  One never knows what will happen next down here. 

 

This is for my brother (in-law from my first marriage Ė remember donít use the in-law word.  Have you noticed that divorce doesnít work in this family?)Ö Dean. Rick always said that I get migraines because of the fighting going on inside my brain.  I blame my mother and father for that!  Tiff mentioned something about ďBeing John Malcovitch.Ē  I donít know the movie, but too bad I wasnít famous.  Only my family and friends can find humor in this mess!

 

This afternoon Tiffany went grocery shopping and Ellie and I played.  Rick slept most of the time.  When Tiff got back to the building, Ellie and I went down to help with the groceries.  It took a while to put the groceries away and return the cart to the second floor.  Then, Ellie asked if I would play with her some more.  This was the most time we had spent together since we left home.

 

First, I wanted to check on Rick.  He was awake and sitting in his recliner.  He looks so pale, weak, and tired.  He said to me, ďIím sorry; Iím just so discouraged.  The kids are coming tomorrow and I have no strength to play with them.Ē  I told him that he would be able to see them and they would be thrilled to see him.  I will admit I am very worried about how discouraged he is.  He hides it very well when he calls his mother. 

 

He asked me if I would sit and just talk to him.  Heís always apologizing for ignoring me.  He isnít; he is just too weak to be engaged in conversation.  I understand.  I sat on the floor next to him and told him stories from the updates.  Considering I never read anything after Iíve written it, that was pretty good.  The stories and the news from friends on the guest book really helped lift his spirits.

 

I am very concerned with how he is feeling.  I am afraid that if I try to get him up and moving, it may make him sick.  He is so weak.  Iím not even sure where I would get him to walk.  On the other hand, I am afraid that it isnít good for him to spend the day in his recliner.  When he was in the hospital with pneumonia, I made him walk around the hallway twenty times a day.  I kept track of the laps on the white board in his room.  The nurses wanted each patient to make twenty laps.  (Here was a note in the hall Ė 24 laps = 1 mile)  One day when he was really nauseous, I didnít force the laps.  He was in a lot of pain and really felt awful.  He was curled up in a fetal position in bed.  His doctor came late in the afternoon.  I told him how terrible he felt.  I was very angry at his cavalier response, ďYou need to get up and move around.  The body wasnít meant to lay around in a lump.Ē  I remember wanted to tell him it should have been ďto lie,Ē but he is the intelligent one.  Iím just a caregiver.  I wanted to shout at him, ďHave you ever endured what your cancer patients are having pumped into their bodies?  Do you know what it is like to be facing a terminal illness and be a guinea pig in a research trial?Ē  But, I had to try to do what he said.  He is the best so he must be right.  I managed to get Rick out of bed and out in the hallway.

 

I totally forgot how angry I was when we tried to get ready for our laps.  I had a routine.  I push the IV pole with my right hand and hold Rickís arm with my left hand.  I had enough difficulty navigating the pole with my right hand.  Well, he was on the wrong side and the lines were twisted.  I kept spinning him around trying to get into position.  It must have looked like we were playing a game of Pin the Tale on the Donkey.  The nurses at the end of the hall were both laughing.  We both laughed all through our laps.

 

Louise (Barikian), Rick really appreciated his trip down memory lane.  I read him your letter from the guest book.  Actually, he has told me the story about the kids and the canoe trip.  However, what were you all doing on those late nights?  Thanks for letting us know about David.  We do understand some of what they are facing.  We will wait for news from you.  Rick sends his love to everyone.  Please give Donna our best wishes.  He misses teaching very much.  It really hurt him to have to retire.  We just knew that his health was never going to permit him to return.  He had planned to teach for quite a few more years.  He really loved teaching and enjoyed the kids and friendships with the staff.

 

Ellie and Pop were looking through the pictures on our digital camera.  I know I promised that we would try to get the pictures on the web this weekend.  It has just been very hectic.  Rick thought he would feel well enough to download them.  Okay, back to my topic.  Some of the pictures were of home.  Ellie looked at Pop and said, ďI miss home.Ē  They just went on with the pictures, but he felt sorry for Ellie.  We are so glad that she will have some company for a few days.

 

Well, it is just about bath time.  Rick really enjoys just soaking in the tub.  Itís always an adventure.  One night I dropped the soap and almost fell into the tub with him.  Washing his hair is always a new experience.

 

 

Until tomorrowÖ..

 

Love,

Nance

 

 

 

July 29, 2006, Saturday

 

Dear Friends,

 

Please accept my deepest apologizes for last nightís ramblings.  There just wasnít anything for me to do except write.  I promise I will keep my spiral notebook nearby.  Next time I will write to myself and spare you.

 

I never know where I will end up typing.  Right now I am in our bedroom.  Rick is sound asleep in his recliner.  The laptop is sitting on top of a pillow.  The keyboard is on another pillow.  I am perched in front of the keyboard, my chin resting on my knee.  The mouse is on the nightstand next to me.

 

I canít believe we have the entire weekend off.  We slept until 10:00AM.  It was wonderful.  The only things I have to do today are flush both Rickís Hickman lines and fill his pills.

 

JoAnn (Eastwick), thank you for your note in the guest book.  Rick and I sat at the table and reminisced about Glassboro.  We still canít say Rowan.  He remembered the stupid beanies very well.  I had no recollection of hazing.  I was a year behind the two of you.  Rick thinks they may have stopped it after your experience with humility.  He remembered that they were the ugly Glassboro colors and made everyone aware that you were Freshmen and fair game.

 

He talked about you and your sister.  His description, ďThey both had dark hair and were very pretty.Ē  Itís okay; I can handle this.  I do remember the first time he saw you at Highland.  He asked who you were because he was sure he knew you.  The good looks are still there.

 

I also heard about Bobby Siefert and his crush on you.  Bobby went to Collingswood High School with Rick and me.  I donít know if you remember him.  He quit school to enlist and became a helicopter pilot in Viet Nam.  He survived a tour in Nam only to be killed in the line of duty when he became a police officer.

 

Do you remember Stokes?  Rick has fond memories of the trip to Stokes.  He said there were several hundred students there.  They had two different trips to accommodate the entire Junior class.  He remembered Jimmy Whitcraft (his father was a professor at Glassboro) playing the guitar while kids called out songs to him.  Bob Dylan, folk rockÖ  We lived in this secluded world of studies, pinochle games, concerts, and flower children and hippies.  Half way around the world we were involved in a war.  Some of our closest friends, still only teenagers, were dying.  It was a time of confusion and lost innocence.

 

Yesterday started out so well.  We were so happy about his lab results.  We have grown to like most of the nurses.  Even the nurse about whom I complained earlier, has become one of our favorites.  Twice she has mixed Rickís mouthwash for him.  She writes him little notes on the bottles.  Made with Love (she draws a heart) by Korinna.  One of the nurses has become a favorite.  Her name is Nikki.  The first time she was our nurse, I kept thinking that she reminded me of someone.  Finally, it came to me.  She reminded me of Cathy Linane.  No wonder we both liked her.  Last weekend she had to go on this nightmare weekend trip with her boyfriendís sister.  She had to travel to NYC and then take a ferry to Fire Island.  Then, they had to walk several miles to the timeshare.  I was trying to help  her with excuses, but she knew she had to go.  Just another similarity with Cathy.  She was in IPOP yesterday.  I had found her in the A wing earlier in the week.  She had told me where she would be so I could hear about the weekend.  Unfortunately, it was a terrible day and she couldnít talk.  She knew she was scheduled for IPOP that Friday.  It had been a terrible nightmare.  When she had a break, she opened the pictures on the computer.  Rick was sleeping.  She called me over and had me pull up a chair.  We had fun reliving her weekend.  By now she was able to laugh about it.

 

Forgive me if I sound ungrateful for the nurses we have.  They have all been wonderful.  They are just wonderful in different ways.  IPOP has become like a second home.  I know most of the nurses.  I can find anything I need.  I feel safe when we are there.

 

Rick talked to Bill (Walton Ė Tiffany and Jasonís dad Ė Tylerís father Ė remember Tyler had the bone marrow transplant) this morning.  Bill was very reassuring.  Although this transplant is very different than Tylerís, he is still aware of many of Rickís problems, emotional feelings, and his progress.  He really made Rick feel better.

 

Rick is still very tired.  He can only describe his physical condition as ďlousy.Ē  This morning he actually sat at the computer and read his guest book.  I kept a close eye on him.  He is not allowed to see the updates.  Iím afraid he will take away my computer.

 

I am waiting until he feels better so I can take him down to the harbor to watch the boats.  He is not ready for anything like that just yet.  It is also too hot outside.  Not that we are ever actually outside, but we do watch the weather sometimes.  In this heat the hat and mask that he must wear will also be quite uncomfortable. 

 

Tiffany took Ellie up to the pool this afternoon.  I know she is just trying to give us some peace and quiet.  It is just too hot for her to try to walk anywhere with her.  It is also the weekend, so the harbor is jammed.

 

I wanted to surprise her.  While she was gone I did two loads of wash, unloaded the dishwasher, loaded it again, made both the beds, and put away all of Ellieís toys in their bedroom.  I even put the trash down the chute.  I know she was thrilled to have a little break.  However, she told me I was supposed to be napping.  Then, she asked how I managed the trash.  Remember, I had watched her the other day so I would know what to do when we were alone here.  She just looked at me and asked, ďDid you remember to wash you hands when you came back in?Ē  I feel so guilty about all the work she does.  Sometimes late at night when I canít fall asleep, I will hear her washing the dishes, loading the dishwasher, and cleaning.  The apartment is always spotless when we get up in the morning.

 

I think Tiff and Ellie are baking a cake to surprise Poppy.  We are both supposed to be sleeping.  I am exhausted.  But, I am afraid if I sleep now, I wonít be able to sleep tonight. 

 

The days off are good and bad.  They give us time to regroup and rest.  However, they give me too much time to think.  My mind is starting to think about home.  I cannot afford to do that.  Itís too soon to become homesick.  Every time I see the date when I start my updates, I think, ďThis still canít be July.Ē  As long as I never leave this building or the hospital building, I can pretend I am not here.  I travel on two streets (except for the couple of times I got lost).  I donít want to see the Inner Harbor.  Iíve never been to the little part of the harbor across the street from this building.  I think we can sit there and I wonít think about being in Baltimore.

 

This morning I said to Ellie, ďRemember Meemie and Pop donít have to go to the hospital today.  We have the whole day with you!Ē  She smiled and asked, ďIs Poppy all better now?  Can we go home?Ē  She has been so good about living in this little space.  She has become Poppyís girl.  Yesterday, she sat with him at the table while he ate his lunch.  She follows him everywhere.  Tiff and I heard them talking, but we couldnít hear the conversation.  I asked him later what they were talking about.  They were discussing the water cycle.  Earlier she and Tiff had been in the park area located on the third floor.  Ellie had a leaf and wanted to throw it into the fountain.  Some man told her not to do that.  When he realized how much he had frightened her, he tired to explain about the drain and clogging it.  She had told Poppy what had happened.  Poppy went on to explain that she could throw it into a stream or a river.  Thus began the lesson on the water cycle.

 

Last night I let Ellie come in and watch as I covered Rickís Hickman lines.  She had asked me what I was doing with the saran wrap.  She had seen me hook up his meds, so I thought it might be good for her to see this part.  I am glad that the sight of it doesnít scare her.  It scares the heck out of me!  I havenít had to change the bandage or the cleaves yet.  I know I can do it; it just scares me to death!!!!!

 

Much to your relief, I am going to close.  It is early and I am going to get the bath ready for Rick.  Hopefully, we will both get some sleep tonight.  Thank you again for all your notes in the guest book, cards, e-cards, and letters.  You are helping us to survive this difficult time.

 

Until tomorrowÖÖ.

 

Love,

Nance

 

July 28, 2006, Friday

 

Warning:  I am not responsible for the following entry.  It is 10:00AM.  We just woke up.  I donít remember much of last night.  I donít have time to read anything.  Rick is waiting for his breakfast.  All I can say is , ďI am really, really sorry!!!

 

Dear Friends,

 

Stop the ride!  We wanna get off!!!!  The highs and lows are making us both nauseas.

 

Our visit to IPOP this morning was short and sweet.  Everything was good; no platelets needed.  We were free to go home.  Oh, one little thing, he had an MRI scheduled for 1:30PM.  I was really tempted to just wait in the hospital until his appointment time.  It seems more stressful to me to drive home and then return.  But, Rick was tired; I drove us home.  We were in the apartment by 10:15!

 

I had been prepared for our normal hospital day.  Rick goes up to the fifth floor to sing in (actually he must sign in, but the thought of him singing in gave me a little smile so I decided to leave this little typoÖTiff J ).  I go to the Juice and Java shop to get our muffins and a chocolate chip cookie.  Rick likes blueberry crumb.  I am torn with choices.  I am really going wild with forbidden food.  I just find a fruit and pick a muffin.  I figure that is a great compromise.  I heard the good news just as I was returning with Rickís tea.  I poured the tea down the drain and packed our things.  We were out of there.

 

I opened our muffins when we got home.  We would have our morning treat before lying down.  I was very surprised to see a blueberry and a cheese muffin.  My favorite Ė but I canít order it because both cheese and the muffin are taboo.  How cool is this?  I get to have a moist, creamy cheese muffin.  I get our tea ready and call Rick to the table.  He asks, ďWhatís that?Ē  I tell him the mistake and that it is a cheese muffin.  ďThat looks really good.  Maybe Iíll have that one.Ē  I was so close.  He rarely wants cheese Danish or muffins.  I enjoyed my muffin vicariously through his comments about how moist and tasty it was.  (I watched him enjoy the other half before he went to bed)

 

I think I mentioned the CD I bought for transplant patients.  Today I purchased ones for stress, fatigue, and pain.  I opened the one for stress.  I got myself comfortable in bed with the hypnotic voice from the headphones carrying me away to some happy, calming far away place.  The next thing I knew Tiff was waking us for lunch.  Neither of us has been able to listen to the CD and stay awake.  We are hoping the woman is not brainwashing us.

 

Itís midnight.  Iíve been in bed since 10:00PM.  Once again sleep eludes me. I was going to cheat and write the rest of my update in the morning.  I was just too tired to write.   Iím tired; my brain just wonít shut down.  I made it through the entire Rosary.  I really had to work to stay focused.  The pain is stronger than the mind.  Today I felt well.  The pain began when I was getting ready for bed.  Finally, I decided to return to my writing.  It keeps me focused.

 

 Rick still has a small rash on the back of his head and on his chest just below his ribs.  We asked the nurse practitioner about it this morning.  She said that if it was graft versus host disease, it would cover twenty-five percent of his body.  This was a surprise to both of us.  We will have to research it more.

 

Tiff asked me what meds Rick would be getting after they stopped the antibiotics for the pneumonia.  All I could say was, ďI donít have a clue.Ē  Tiffís reply was, ďMom, that seems to be the story of your life.  You really donít have a clue.Ē  (laughing as I said itÖtiff) Iím afraid it is sad but true.

 

Rick and I have been researching bone marrow transplants for several years.  We had been through five years of treatment and a bone marrow transplant with Tyler.  Yet, here we are and neither of us seems to understand what is going on. 

 

Our appointment for Rickís MRI was quite and adventure.  It began with me trying to get Rick ready to go.  He was seated at the table.  Tiff had made him some soup.  I finally told him what time it was.  He still needed to get dressed.  He told me he would.  He just had to rest for a few minutes in his recliner.  We really had no time for resting.  But, I could see that I was not going to hurry him.

 

I am fanatic about being on time for anything, preferably early.  That is my fatherís fault.  He is always punctual.  My mother, on the other hand, was never on time for anything.  It is why I am always rushing to do everything.  I am always racing with myself.  I still canít decide which is better Ė my obsession with time or not worrying.

 

The summers I usually become my mother.  I donít worry about anything.  Maureen (yes, my exís wife) and I float in the pool hanging onto our pink rings.  We can stay there for hours.  For two glorious months, I donít worry about time.  I love it.

 

We havenít been in the pool much for the last two years.  Our summers have been spent in treatment.  We enjoy the pool by listening to the kids playing in the water.  I think I must stop.  I am becoming melancholic.  And, I am digressing.  Where was I?

 

I had to go back and look.  I was trying to get Rick ready for his MRI appointment.  I think I finally have him on the way.  I had him seated in the chair right at the door.  I had finished getting his sneakers on and tied.  Next thing I know, He is headed back to the bedroom for something.  Tiff just looks at me.  We never enter the apartment until we remove our outside shoes.  There is nothing to say at this point.  Finally, we make it to the elevator.

 

Tiffany loaded us all into the car.  She backed out of the narrow space and headed to the exit.  There was a car directly in front of us.  It stopped; the bar came up; the car exited the building.  Tiffany pulled us; the bar came up; Tiff pulled through.  Just as she stepped on the gas, the bar came crashing down.  It hit the car where the windshield meets the hood.  All we saw in the center of the windshield was this big red stop sign.  Thank goodness there was padding of some sort on the bar.  Tiff had to go back and forth several time before the bar finally lifted.  We should have known then; this was not going to be a smooth trip.

 

We were not sure where the building was or how to enter it when we found it.  We did know that it was across the street from the cancer center.  We would have to go past the cancer center and make a u-turn at the next light.  We were waiting in traffic when a female officer walked up and banged on Rickís window.  Our nerves were already frazzled.  What had we done now?  Apparently, the car (actually two cars) directly in front of us was parked.  We never noticed the car was empty.  Cars were beginning to line up behind us.  Tiff had to maneuver the car back to the other lane of traffic.  Finally, she managed to get us to a drop off point.  The building is not on the street.  On the two sides of the building we could see, there was another building between it and the street.  Close enough.

 

We did manage to arrive five minutes early.  I completed all the forms and returned them to the receptionist.  She apologized when she explained that they were running forty-five minutes late.  Now, I am feeling even guiltier for being annoyed that I couldnít get Rick to move faster.  By 2:30, Rick was feeling really tired and sick.  I approached the receptionist and told her Rickís condition.  It took another fifteen minutes to get a tech person to come out to talk to me.  Sheís apologetic, but I really donít care.  Rick is beginning to fade.  He has been sitting on an uncomfortable chair, with his hat on and his jacket zipped to his neck and the hood over his hat.  He is still cold.  Of course, the uncomfortable mask covers most of his face.  She finds a room with a bed for him. 

 

I returned to the two little waiting rooms.  I knew that other people had earlier appointment than we did.  I announced that they were not taking my husband for his MRI.  They just found a bed for him.  They were all very understanding.  I do believe that any one of them would have gladly let Rick go ahead of them. 

 

Then I went to the only little spot where my cell phone works.  I called Tiff and told her the problem.  I asked her to IPOP and tell them the circumstances.  I was very worried about Rick.  I had checked his temperature as soon as I got him in bed.  He had felt warm and he had been chilled for some time.  At least he didnít have a fever.  I asked her to tell the nurse that I was taking him home and we would not be returning again for the MRI.  She called Tiff back while I was on the cell phone with her.  Korinna, our nurse this morning, had called someone in this department.  Rick would be taken immediately.  I had left Rick two times to call Tiff.  On my second trip, I noticed that both waiting rooms were empty.  I think all the people had been directed to other places in Hopkins where they had MRI machines.

 

It was 3:15PM by the time they finally took him into the room.  This was after I told the nurse that he would not be taking his mask off.  He was severely nutrapenic (not sure if I even had the right term).  She finally got him a different mask that didnít have staples.  Neither of us knew what lay ahead.  He was in the tube in that room for forty-five minutes.  I know because I watched the minutes tick away.  I paced in front of the room just outside the room where Rick was lying.  I pictured him cold, alone, and in pain.  I wanted to scream.  I could just see his legs from where I stood.  I found an employee and told her that I needed a wheelchair brought to me for my husband.  It wasnít that simple for some reason, but I got one.

 

When Rick finally came out, I got his good mask back on him, put his jacket back on with the hood up, and wrapped him in a blanket that I had found.  It was 4:00PM.  I pushed the wheelchair with one hand and pulled our little black suitcase with the other.  I called Tiff as soon as I got him to my phone call space.  She was already on the road.  I asked her how she knew he was done.  She told me she looked at the time and knew I would be taking him home regardless of what they said. 

 

I maneuvered my little caravan out of the building.  There in front of us was the narrow ramp that connects this building to the other building on the street side.  It is just wide enough to fit the wheelchair.  It is a rather steep incline.  Rick wants to know if I think I can handle this.  Of course I can.  I push the handle of the suitcase back inside.  Then I place it on Rickís lap.  My handbag is swinging from the IV pole.  I get a solid grip on the handles.  I make sure my footing is secure.  Ahead of us is a big plate glass window.  I know if there are any mistakes, Rick will go crashing right through that plate glass.  I am still wondering who designed this accident waiting to happen.  We made it down the ramp and outside to the street.  Tiff was there to help us into the car.  We will remember the funny things leading up to the appointment.  By the evening we were laughing.

 

I watched some of the news tonight.  We are very lucky.  We are right next to Fellís Point.  According to the reporter, this is a hot spot for dining.  They have been losing their electricity frequently.  They are angry because they are losing money.  They are without power for hours in the evening.  We are only a few blocks from this mess.  I couldnít imagine being stuck in this apartment for hours with no air conditioning and no lights.  I think everything in this apartment runs on electricity.  So, things could be much worse!  I am thankful for electricity!

 

I think I must try to get some sleep.  Iím not sure; but I think it may be after 2:00AM.  I canít see my watch.  My eyes are too blurry.  Rick just came out to get me.  He is up and down all night long.  He noticed I wasnít in bed.  Maybe I will listen to my CD on stress.  If I find out what she is saying, I am in trouble.  If that happens, I will just have to return to my keyboard.

 

Until tomorrow (I hope!)Ö..wait; it is tomorrowÖ J

 

Love,

Nance

 

 

Thursday July 27, 2006

 

Dear Friends,

 

Itís 10:20AM.  Rick and Ellie are still sleeping.  Tiff is sitting in the living room waiting to get to her chores.  She is not used to having us home at this hour.   We have interrupted her routine.  I do understand.  We are both trapped in the cramped living area of the apartment.  We also have to be quiet.

 

I miss my late nights with my computer.  From 11:00PM (sometimes even 10:00PM) until 1:00AM the living room was just mine.  I would float in a sea of silence.  My thoughts would flow faster than my fingers could fly across the keyboard.  If I hadnít had to disconnect Rick from his meds, I think they may have found me still typing when the sun came up.  It was my private escape, my own utopia.

 

Last night I thought we would be back at the hospital.  Tiffany had made some scrambled eggs for Rick for dinner.  It was about 4:15.  I noticed he was hanging his head and wasnít eating.  I asked him if something was wrong.  He had so much pain in his arm he couldnít use the fork.  I fed him dinner.  I did tell him that if had been left-handed, he wouldnít have this problem.  J

 

Finally, he asked if I thought he could take some oxycodone for the pain.  I thought we should check with his nurse practitioner.  He couldnít make up his mind what he wanted to do.  It was 4:30PM and the IPOP closes for phone calls at that time.  This is another one of those times when I want to react immediately and he wants to think about it.  I told him it was 4:30 and we didnít have time for him to think about it.  His nurse took my call.  It was my second call that day.  She told me that she would call Audra and get back to me.  She wasnít sure if they might want him back in the hospital.  These are the times I know why I never get my hopes up.

 

When I had called earlier in the day to find out if we needed to come in today for platelets, Korinna had given me the results of his x-ray.  She mentioned something about degenerative bone loss in the arm.  They may want to do an MRI.  They didnít see a connection with the leukemia and the transplant. 

 

When Korinna called she had good news.  He could just take the oxycodone for the pain.  Then came the next problem.  He didnít want to take it yet.  I tried to explain to him that it was better to take it before it became worse.  He finally took it.  The pain did subside.

 

We were in bed by 7:30PM.  However, we couldnít leave the room.  If Ellie sees us, she wants to play with us.  Tiffany gets her calmed down.  As soon as she sees me, she gets excited and Tiff has to start all over again.  Any time we need something, we call Tiffís cell phone and order it.  Itís just like room service.  We donít even have to get out of bed.

 

Rick and I talked for the first time last night.  You would think we had so much time together that we would run out of things to talk about.  Most of our conversations revolve around the problems, decisions to make, and how he feels.  He also sleeps a lot.  He is constantly apologizing for ignoring me.  He drifts in and out of a light sleep.  His voice is also very weak.  This time we discussed my health.

 

I had forgotten how sick I was when we came to Baltimore.   It had started in January and progressed until I had to leave school.  I was in constant pain and I had to stop driving.  I did finally see a specialist, but he just dismissed me.  At that point, there was no more time left to make appointments.  I am really not always this disorganized.  The teachers with whom I work will attest to this.  I am always prepared and two steps ahead of everything that must be done.  I have plans A, B, and C.  However, living in constant pain has drained me.  I have difficulty concentrating.  I really do quite well in the hospital most of the time.  I handle all his medications without problems.  On the days that I am not in pain, I will admit that I do much better.

 

This morning Rick and Tiffany were discussing making an appointment for me with Tiffanyís Gastro-Intestinal specialist.  They wanted me to make an appointment for August.  Someone could drive me up, take me to the doctor, and drive me home.  No way.  Then, they decided on the first week in September.  No way.  I told them we had no guarantee that we will be home that first week.  I also need a week at home to regroup.  I will go the third week in September Ė late in the afternoon so I donít have to miss school.  Tiffany finally said to Pop, ďWe might as well give up.  Itís like talking to a brick wall.  Sheís worse than I am!Ē

 

I am sure that he will have me scheduled for the surgical center for different procedures.  This may be a problem.  I am needle phobic Ė really phobic.  For some reason, I have found that most medical people do not understand the definition of phobic.  Also, Rick does not leave my side until I am being wheeled into the procedure room.  No IVís until they are going to knock me right out.  I must be sedated in the morning prior to leaving the house.  I need to know exactly where the IV will be placed.  I have to have Emla cream (it numbs the skin so I donít feel the IV) on the area for two hours before the procedure.  The procedure doesnít scare me Ė just the IV. 

 

You can see why I donít want to deal with this problem as soon as we get home.

 

Rick is still not feeling well.  His arm still hurts.  This morning he sat in his recliner instead of climbing back into bed.  He said that he is up about every 90 minutes during the night.  It is very painful on his arm trying to get in and out of bed.  I have noticed a little rash on his stomach and still on the back of his head.  We will show the nurse tomorrow.

 

I must run for now.  Rick and Ellie are awake.  Iím not sure when I will be back.  My schedule has been turned upside down.  So has Tiffanyís.  Weíll work it out. J

 

Itís 1:15PM.  Rick is sleeping in his recliner in our bedroom.  Tiff took Ellie to the pool.  I know she just wanted to give us some peace and quiet.  They donít go to the pool very often.  The lifeguards are rather mean.  I think they are aggravated when someone arrives at the pool.  Usually no one ever goes and they can just read their books and relax.  They are from Russia and speak very little English.  The pool is cement and Ellie always gets scraped.  She had gotten used to our pool where she can touch the bottom.  She cannot touch the bottom in this pool and she doesnít want to wear her tube anymore.  Tiff has to stand with her and hold her hand the entire time.  I hope they donít stay very long.

 

We were given orders before she left.  Donít touch the stove.  Donít answer the phone or the door.  Donít try to clean; she will do that when they come back.  We have really messed up her routine.

 

She made sure we had eaten lunch before she left.  She heard me ask Rick what he would like to eat.  Then I just laughed.  After the soup instead of scrambled eggs incident, I said, ďNot that what you ask for may be what I make!Ē  Thatís when Tiff said, ďPoppy, just tell me what you would like.  Mom, stay out of the kitchen!Ē

 

Rick is really feeling ďlousyĒ today.  He canít describe it, but he does not feel well.  I am sure that all the meds he must take have irritated his entire system.  I wish I could do more to help him feel better.  I feel so helpless most of the time.

 

Last night I felt so guilty.  I had helped him get his bath.  Then I let him just soak for a little while before I washed his hair.  He still has some left.  Then I helped him out of the tub and dried him.  Last, I help him into his pajama bottoms before he comes out of the bathroom.  In between each thing, I put cream on my hands; they are so dry that they hurt.  Before he was about to put his shirt on, I mentioned a rash just below his rib cage.  We checked that and the rest of his body.  Then, he said to me, ďDonít forget to wash your hands.Ē  The cream was barely absorbed from the last application.  I didnít say anything; I just washed my hands again.  Then, I went to put the last pillowcase on his pillow for under his legs.  Right before I could pick it up, he picked it us and tossed it across the bed.  I didnít say anything.  I just walked around the bed; I picked it up; I put the case on it; I returned it to his spot on the bed.  I knew I was aggravated and I shouldnít have been.

 

We climbed into bed.  He asked if I was okay.  I decided to just tell him the truth.  He apologized.  I told him it wasnít his fault.  It wasnít anyoneís fault.  We are both just exhausted and under a great deal of stress.  We are so fortunate that we always make it through.  True love is very patient and kind; we rely on that and our faith to carry us through this ordeal.

 

The other night Tiffany made me get on the scale.  I asked her what her problem was.  I donít weigh myself.  The scale is neither my friend nor my enemy.  I just donít have time to think about it.  I judge things by my clothes.  Since I usually wear very baggy things, I probably wouldnít notice anyhow.  I did know that I had lost some weight, but that was because I had changed my diet to control my cholesterol.  Blood tests are not happening.

 

I always buy my clothes one to two sizes bigger than I wear.  I always buy medium or large.  This works well for me.  I donít like things to touch my waist.  I have lots of baggy jumpers.  I buy long skirts several sizes larger.  That way they sit on my hips and the added benefit is they reach my ankles.  I like long skirts.  This past winter I couldnít wear them; they fell off.  The pull-on baggy pants that I bought for the days in the hospital are mediums.  I washed and dried them before we left.  I wanted to make sure they still were nice and loose.  They are so loose that when I tried to hook Rickís and my cell phone on the waist, it pulled them right down.  Perfect!

 

So, back to the scale.  I complied; do I really have a choice?  102!  Tiff was elated; I couldnít figure out why.  She said to me, ďMom, donít you remember what the doctor told you?Ē  I remembered nothing.  Apparently. I was down to 95 pounds.  I had to go back in two weeks.  If I didnít gain weight she felt she was going to have to admit  me in the hospital.  No wonder I donít remember; Iím not checking into any hospital.  Tiff said I had gained two pounds in the two-week period between visits.  I escaped further conflicts by coming to Baltimore.  Until TiffanyÖ  Hopefully, she will let me alone for a while now.

 

Tiffany tried to talk me into asking someone to come down and go out to eat.  She thought the visit would be good for me.  I tried to explain how I have to deal with this.  It is not that I wonít leave Rick.  I know he is probably safer with Tiff than with me.  I canít allow myself to leave this protected bubble we are living in.  I have no sense of time.  I donít see where I am.  Time is standing still.  I canít miss what I donít see or hear.  I donít want to talk about what is happening.  I have gone into my shutdown mode.  If I get homesick I wonít be able to hold it together.  I am really fine like this.

 

The city is cold.  Elevators are dead zones.  You donít make eye contact.  There are no conversations.  Once in a while someone strikes us a conversation.  I often wonder if they are here for reasons like ours.

 

There is another high-rise apartment directly across from our windows.  Every once in a while I peak out of the blinds.  They all keep their blinds closed just like us.  There is no sign of life.  During the day you can see the men on the high-rise construction right next to the apartment building.  I have never seen anyone in our hallway.  I have no idea who lives in the apartments right next to us.  It is a strange existence for a girl from a small town.

 

Over the weekend, Tiff and Rick are going to try to download our pictures.  I have to explain one of the pictures.  I am always talking about the little black chair I have in Rickís little cubicle.  The day before I took the camera with me, I the nurse brought me a chair.  I noticed it was green.  I didnít think much about it.  Then, the next day when I had the camera Ė there it was again.  The green chair!  I walked up and down the unit.  All the chairs were green.  I thought I was going crazy.  I took the picture with a green chair.  When Rick was done with his labs, he met me in the cubicle.  I told his about the green chair.  No, I wasnít wrong.  He confirmed that the chairs had always been black.  So, when you see the green chair, I canít explain what happened.  Rick offered to play with the picture and make it black.  I thought he had better things to do.  Also, much to my surprise, there is a little window in the cubicle.  I had never noticed it.  Iím not sure about all the units.  I do know that the luxury suites do not have windows.  Okay, I just didnít want you to think I was completely crazy.

 

I think I had better stop for now.  I canít believe anyone is still with me at this point.  I may regret this journal writing when we are home and things have returned to normal.  Rick and I wonít read this for some time.  These are the ramblings of a neurotic caregiver.

 

Until tomorrowÖ..

 

Love,

Nance

 

 

Wednesday July 26, 2006

 

Dear Friends,

 

Guess what time it is!  Itís 1:00 PM, yes, one in the afternoon.  Guess where we have been!  Weíve both been sound asleep Ė IN OUR BED!!!  We have been there since about 11:00AM.

 

Today was our best day ever in IPOP.  We talked with Audra about Rickís progress.  He is to stop his one med today.  That is two less pills a day.  The nupagen (growth factor) injections will stop.  He shouldnít need any more blood transfusions since Ted and he are the same type.  We shall have tomorrow off and the weekend. 

 

I called Tiff immediately.  She was so excited.  However she warned me, ďIím not ready.Ē  What was that supposed to mean?  Then she went on.  She hadnít finished our bed.  The clean sheets were on, but she was waiting for the pillowcases from the dryer.  She also had cleaned and disinfected our bathroom yet.  Here, I thought she wasnít dressed or had just washed her hair.

 

We arrived home; we washed; we changed out of our hospital clothes.  I found other pillowcases in the closet.  Rick stretched out in his recliner.  Tiff came to check on us.  I told her I had found these pillowcases in the closet.  She said that was okay, but she kept the light lavender on the ones we liked under our heads.  She put the darker lavender on the ones for under our legs and I use a second pillow under my head.  You see; we like the really soft pillows to sleep on.  They came with the bed.  I told you we loved this bed.  The firmer pillows are the new ones we brought with us.  The first time she changed the sheets, it took us a while feeling all the pillows until we had them in the right places.  By the way, I think it is very important to mention that Rick was just as concerned.  Iím not completely alone in my crazy (too bad we are not rich, we would just be exocentric) behavior!

 

Her are the counts for today:

 

 

                       7/23         7/24         7/25         7/26

White cells        470          1370        1380        4800

Red Cells          2.83         2.80         2.74         3.46

Platelets           22            8              22            13

ANC                                1206         1076         4128

 

Audra had told us she wanted to keep us there for platelets so we wouldnít have to come back tomorrow.  After we arrived home, I had some time to think about what had transpired in IPOP.  Our nurse called down to Dr. Platelet (yes, we asked and that really is the doctorís name) and he or she said Rick didnít need platelets.  I just saw the 13 count when I updated the counts.  I think Audra knew that he would need them tomorrow.  That was the reason for giving them today.  I know I have to call IPOP and have them call Audra.  We may still have to go tomorrow for the platelets.

 

News Flash!  I just called IPOP.  I spoke with Korinna about the platelets.  Dr. Platelet (male) had spoken to Audra before the decision was made.  We will still be off tomorrow.

 

When we woke up, I asked Rick what he would like for lunch.  Our housekeeper/maid/chauffer/companion etc. had gone to Fellís Point with Ellie and Fran.  I vaguely remember her telling me about giving us some privacy.  All I remembered was Fellsí Point.  Rick asked for scrambled eggs and toast.  That was what he wanted last night for dinner.  He gave his mother a call while I made lunch.  When he went to the table he asked, ďDidnít I ask for scrambled eggs?Ē  I had made him chicken noodle soup.  I told you I am not to be trusted when I first wake up.  I had also spilled the soup on the counter.  I soaked both of the potholders getting the soup out of the microwave.  Then, I spilled the bowl of soup all over the place mat.  I actually had to get that to the sink to empty it.  Rick asked if he could heat the soup a little.  Then, I couldnít remember if I had even heated it.

 

I tried to open a can of fruit for me.  I broke off the little tab top.  Next, I tried a can opener; that didnít work.  Then I took out the thing that opens cans of juice.  After two punctures, the lid started to fall into the fruit.  I finally got it opened and I had not injuries.

 

I am amazed at how much I do take for granted from Tiff.  We were on our own for dinner last night.  Rick wanted scrambled eggs.  I would have heated pizza in the oven, but I want to make whatever he can eat.  Pizza didnít sound good to him.  I had to cook.  Then I had to clear the table and wash the pan!  I am too tired for this.  He is able to eat small meals.  He tells me that he may just have some more scrambled eggs a little later.  Boy, do I miss Tiff!!!!  And, I really thought I wasnít taking anything for granted!!

 

Fortunately, Tiff arrived home before he wanted eggs again.  I insisted on making them.  I knew I was depending too much on her.  Before she kicked me out of the kitchen, I had made a mess.  The toast popped up and Tiff asked where his eggs were.  I forgot to make them.  The pan was on the stove Ė empty.  I got the eggs out of the fridge and turned on the stove.  Tiff screams, ďWhat burner did you turn on?Ē  That would have been the wrong one; I guessed.  Next thing I knew, I pushed a plastic baggie onto the burner.  Ellie starts yelling, ďWhatís burning?Ē  It was at that point that I was banned from the kitchen.

 

Barb (Konrad), thanks for the idea about the white noise machine.  We actually have something even better.  Tiffany bought air filter machines for each of the rooms.  They have three speeds.  The small ones are in the two bedrooms.  Denise (Dager) had suggested them.  When it on low, it just hums very soothingly.  Tiff turns it on high when we leave.  She makes sure it is on low before we come home.  He hates it.  We have to watch him because he is always turning it off.  I donít even hear it on low.

 

This afternoon when we woke up, he was very cold.  He was out in the living room before I made it out of the bedroom.  When Tiff, Fran, and Ellie got home, the first thing she asked, ďIs this off?Ē  She was referring to the air filter machine.  Pop replied, ďIt was so cold I turned it off.Ē  We donít comment.  Tiff does explain that she has to turn it on high for three minutes before she switches it to low.  We donít mention that it wonít make it colder in the room.

 

Rick has very little hair left.  He told me to scrub it last night when he was in the tub.  He says if he had it to do over, he would have had Jason shave most of it with his clippers.  How could you possibly know how you are going to react to losing your hair?  Women sometimes have a chance to find a wig that resembles their own hair.  She can then start to wear it before the traumatic event happens.  Men are not that fortunate.  He is, however, comfortable in the hat I found in the hospital store.  He is handling this well.

 

Last night after Rick had gone to bed, I suddenly remembered I wanted to take his slippers to the hospital.  I was in the middle of a conversation with Tiffany when the thought hit me.  I just said, ďWait a minute,Ē and ran into the bedroom.  Rick was lying in bed watching our new TV. (Thatís another story)  I ran in the room and dropped to the floor on my knees.  I picked up the dust ruffle on his side and continued around the entire bed until I was at the end of my side.  Then I crawled into the closet.  No slippers!  I stood up and Rick simply asked, ďWhat are you doing?Ē  I told him I needed to find his slippers to put them in our suitcase for the hospital.  He told me they were out in the little dining area.  I went out to look for them.  Tiffany told me I should have told her what I needed.  Apparently they had been in the same place since we moved in here.  Not only were they in the dining area.  They were on the floor actually touching the suitcase.

 

Does anyone remember the broken remote for our TV?  Tiff had notified the leasing company.  They sent someone out on Monday.  They came in, checked the problem, and left this note: ďTVís not receiving programmed remote Ė will have to replace ASAP.Ē  All Tiff had asked for was a new remote.  We all thought this was a simple request.  Yesterday, there was a knock at the door.  When they opened the door, there was a gentleman with a new TV to replace our broken one.  Tiff told him we only asked for a remote.  He was just a little aggravated with the girl who had taken Tiffís message.  He replaced the TV since he was here.  Then he had to go back to his truck to get a remote.  When I looked at the note he had left on Monday, it made more sense.

 

Rick is napping again.  He is listening to a CD I purchased in the hospital.  It is specifically made for transplant patients.  It is supposed to help you learn to heal your body on your own.  I started to listen to it when we came home from the hospital this morning.  I fell to sleep part way through it.  I found it very soothing.  It also tells you that it will still work while you are falling asleep.  When he went back to bed after lunch, he listened to it.  He really likes it.  They have the same type of CD for stress and fatigue.  I will purchase them both on Friday.  The womanís voice is almost hypnotic. 

 

Today is the first day we have really had a good feeling about all of this.  We are so excited about sleeping in tomorrow morning. 

 

Thank you all so much for your letters in the guest book.  You have no idea how much we look forward to them.  It always seems that someone writes about something we needed to hear at that particular moment.  We are truly blessed to have so many friends helping us through this difficult time.

 

This would be the perfect time to tell you some of the funny stories from my notebook.  However, I think you could all use a break from my pages and pages of writing.  If things continue this way, I should have plenty of time to write.

 

Until tomorrowÖ..

 

Love,

Nance

 

 

Tuesday July 25, 2006

 

Dear Friends,


Have I told you recently how fortunate I am to be married to Rick?  I was aware of his bravery and courage when he decided to marry a mother of two pre-teens, with a 100-pound dog, one neurotic cat, and a guinea pig.  Does anyone in his right mind take on that mess?

 

He was a very patient friend from the first night he came over for a visit.  I, on the other hand, was scared to death.  I had called him that afternoon and totally surprised him.  We hadnít spoken to each other in about thirteen years.  Silly me, when he answered the phone I said, ďIíll bet youíll never guess who this is, Ricky!Ē  He started giving me names of different girls.  I said, ďStop,Ē and started laughing.  Immediately he said ďNancy Watson.Ē  I was shocked.  I asked him how he possibly knew.  He said he would recognize the laugh anywhere.  Also, no one called him Ricky anymore.

 

Our phone conversation was interrupted several times.  Finally, he asked if he could stop over that night.  He was meeting a friend at Old Grads, a bar in Oaklyn where I lived. (Yes, I know I have a misplaced modifier Ė I donít live in the bar)  I didnít know how to politely say no.  I didnít believe the story about a friend.  I also had never let anyone come to the house.  I called my parents.  They were taking me out to dinner and the kids were spending the night with them.  I told them they had to come back to my house and stay.  I couldnít be alone.  Rick arrived to a room full of people and kids.  My niece was with us.  After a while I felt safe enough to let my parents leave.  Rick and I caught up on the past.  I remembered the good old days.  Rick was always there. 

 

We werenít dating.  I had made it very clear from the beginning I had no intention of dating or becoming involved in any relationship.  My kids came first.  I also had another steadfast rule Ė never get near anyone with children.  I believed no one would ever love my kids they way I did.  We continued to ďseeĒ each other all the time.  It was so comfortable and familiar to have my best friend back.  The only problem was that I had noticed I was becoming dependent on him.  I cherished my new found independence.  I was proud that I was coping on my own.

 

One night on our way to have drinks in Philadelphia, he asked if he could hold my hand.  Apparently, he was well aware of just how fragile and determined I was.  It was our first step.  I must tell you that it is strange falling in love and marrying your best friend.  And, I learned that someone could love my kids as much as I did!

 

Rick is facing this disease and horrific treatment regimen with the same courage and bravery.  He never complains; he never gets angry, he never loses his patience with me.  That last one must be very difficult.   I have witnessed the anger in the hospital.  Iíve seen husbands yelling at their wives.  Iíve seen the wives trying to help in any way possible.  Tiffany has gotten to know a woman staying in these apartments.  Her husband is a cancer patient at Hopkins.  They are living in a nightmare relationship due to his anger. 

 

I understand the anger.  How does one deal with a terminal illness?  The younger the patient, the more anger I would expect.  Iíve just never figured out at whom I would direct the anger. 

 

I am truly amazed at the strength and calmness that he possesses and always displays.  Believe me, this disease strips you of any dignity, or privacy that you have.  Every little part of your life and body is spoken about freely and openly.  This is not easy.  He is an inspiration for all of us.

 

Today was our ďshortĒ day at IPOP.   It began at 8:30 and ended close to 3:30.   He only had his x-ray and a blood transfusion.  We were told that we should go right to x-ray.  He had been scheduled for 9:00.  They did his labs and took his vitals and we were on our way.  We arrived a few minutes before 9:00.  We were told that we would have to come back in an hour.  They had sent the x-ray tech somewhere.  We discussed the situation on the way back up to IPOP.  We would ask to wait until after the x-ray to have the transfusion started.  You cannot leave the unit with any blood products.  We found out the transfusion time was a moot point.  The blood wasnít ready.  They were not finished doing studies on his platelets from yesterday.  Until that was done (this is standard when a patient has a reaction to the platelet infusion like Rick had yesterday), they couldnít get the blood ready.  At 10:00 we went back to the second floor for his x-ray.  We went back to IPOP and waited.  The blood arrived around noon.  Then, we learned that he needed two bags.  He finished his transfusion at 3:00 this afternoon.

 

Around 2:00 I had gone back to one of the recliners to take a nap.  I had been in a lot of pain and I knew I had to lie down.  I fell sound asleep.  Our nurse had to wake me up.  Just then, I received a call from Tiffany.  The men had finally come to change the filters.  She also had them fix our tub.  They were ready to go out shopping when she realized the car seat was in our car.  I told her we were on our way out of IPOP.

 

I was trying to move as quickly as possible.  We hopped on the elevator with a couple who were very slow.  I hit L1 -level one - that was where we usually park.  They were trying to decide which level they were on.  Then she remembered, two because it rhymed with Clue her grandsonís dogís name.  Please just press a button.  I smiled and said, ďWeíve done the same thing.Ē  We jumped off at L1 and flew out the glass doors.  I couldnít find the car.  Then I remembered that L1 had been full this morning.  I had no idea where I had parked.  We rushed back to the elevator.  I told Rick to stay on the elevator and hold it until I looked outside for the car.  Fortunately, we were on L2.  I started out of the parking space and Rick calmly says, ďYouíre going the wrong way.Ē  Itís so confusing.  Our apartment parking is above ground.  The hospital is below ground.  I think he was just closing his eyes while I was switching back and forth between lanes while I was driving.  Then we finally reached the street the apartment building is on.  We usually drive all the way around the block so we can approach the very narrow entrance from a wide turn.  I asked Rick, ďDoes it really make a difference how I enter the building?Ē  He said, ďNot really.Ē  I guess he figured I had already hit both sides of the car; whatís left?  However, all of a sudden I was lost, ďWhere am I,Ē I screamed.  I still donít remember if I turned somewhere or stayed on the same street.  By the way, he had offered to drive while we were still in the hospital parking lot.  I made it in the building and didnít hit anything.  Now you know why I couldnít go to sleep until I was finished with Rickís midnight meds. 

 

Rick lost a lot of his hair last night.  He finally decided to let me wash it when he took his bath.  I asked Tiffany to prepare Ellie for what could happen.  He asked me to be very gentle when I washed it.  It was difficult to rinse.  His hair just kept running down his back.  Most of the back was gone, but I knew he wouldnít see that.  There was enough left on the top that it wasnít shocking.  When he was dressed and back out in the living room, Ellie came over and rubbed his head and kissed him.  Poppy still had hair.  She will be okay when it happens.  Rick is still very worried about it.  He is always apologizing for ďbeing silly.Ē  I donít think itís silly at all. 

 

He and I are very opposite.  He takes things slowly.  I throw myself into things with total abandon.  He turns things on low.  I go right to high.  I would have really scrubbed his head and tried to just remove the hair.  He needs to do things in stages.  Today I found him a cap for men with loss of hair from chemo.  They have a store in the hospital.  At least he is ready now.  He thinks he looks terrible in hats.  Most guys throw on a baseball hat.  He has never liked how he looked in them.  He needs to have his head covered in the hospital; itís freezing.

 

Tiffany remarked that she couldnít even see a difference.  She admitted she didnít have her glasses on.  That only tells me that her eyesight is as bad as mine.  I quietly told her just how bad it really was.  She said to Ellie, ďTell Meemie that Poppyís not a genie in a magic lamp; stop rubbing his head!Ē

 

Would you believe I got lost again on the fifth floor?  Rick wanted some jello.  I checked our pantry fridge.  We only had lemon.  I went back and told him I was going to check the other units.  Each pantry door has a sign telling you that only IPOP, HIPOP, or patients admitted to the hospital are to use that particular pantry.  The different units do not share with each other.  I just pretend they are not there.  Iíve even gotten brave enough to go to the desk to request the key for the one they keep locked.  I found him cherry jello!  I also noticed they had grape jelly.  I had a muffin back in IPOP.  The last time I found jelly, I also found butter.  Butter is not on my diet.  I gave up butter two years ago.  Then again, neither was the muffin.  Not only did I pilfer the jello; I pillaged the container with the jelly.  I finally found two pats of butter.  I then put everything neatly back in the container.  However, by the time I had left the pantry, I couldnít remember which one I was in.  Itís okay; the fifth floor is a circle.  Eventually I know I will pass IPOP. 

 

I almost forgot; here are todayís counts:

 

 

                       7/22         7/23         7/24         7/25

White cells        140          470          1370       1380

Red Cells          2.93         2.83         2.80         2.74

Platelets           23            22            8              22

ANC                                                 1206        1076

 

Tomorrow is supposed to be a short day.  You can see why we never count on short days or a day off.  I wasnít thinking when Audra told us that if things continued the way they were, we would have the weekend off.  It was only Monday.  We operate on an hourly basis here.

 

Thanks for the info about the platelets, Karen.  Iím sure we have lots of information about the protocol.  We have copies of all the consent forms we signed.  Truthfully, we havenít really looked at any of it.  We just try to make it through each day.  Since we had no other options, we have just accepted that we have to place our trust in the doctors.  (Karen, I just type the updates.  Iíve never transcribed the written notes I have.  I just sit down and start typing.  I never know where it is going or what I will remember of the day)

 

I want to thank my family for being so patient with us.  I never call home.  We only talk to Jason and Nicky several times a day.  Tiffany talks to Bill or Maureen every day when we are at the hospital.  It would be very difficult for me to hear their voices.  I would remember how much I miss them.  We are a close family.  We are on the phone with each other all the time.  I have never been separated from them for so long.  I can only talk about some of these things so many times.  Itís easier for me to write about them.  Today one of my sisters (I have one biological sister Ė the other two are by marriage and one from my previous marriage Ė I told you we donít use the words half step or in-law) called and asked Tiff where the update was.  She had been so busy this morning that she had forgotten to post it.  I donít want to think about where we are or how long we have been here.  I exist in my own little bubble.  Most of the time, we are able to find humor in odd places.  I miss my family, my friends, my home, and our life.  For now we just have to survive.  If I stop and think about what is happening, I might not be able to fool myself any longer.  We canít have that.

 

I must close.  My list of funny stories keeps getting longer.  I just never have time to write about them.

 

Oh, one more thing.  Does anyone remember my story about the woman in line at the hospital pharmacy?  She wasnít standing in the right place.  Today I remembered the camera.  I took pictures so everyone would know why she was in the wrong place.  I also took pictures of our little cubicle.  Rick thinks I am nuts.  If we really do get this weekend off, maybe Tiffany will be able to update the pictures page.

 

Until tomorrowÖÖ..

 

Love,

Nance

 

Monday July 24, 2006

Dear Friends,

Iím not sure if anyone is still reading after yesterday.  Iíve always said that I would be content alone in a room with a comfortable chair, wide-ruled spiral notebooks, and medium point Bic pens (blue please). 

I must warn you that this entire ordeal is an emotional roller coaster.  I am not fond of most amusement park rides.  I would never get on a roller coaster.  I really donít like this one!  However, I think I am managing this one better than the real kind.

Today was a wild ride.  Is it Kinda Kon (or Kingda Ka Mom :) at Great Adventure that is supposed to be the highest roller coaster in the country?  Let me tell you, it has nothing on this ride!

We shall start at the beginning Ė his counts

                       7/22         7/23         7/24

White cells        140          470          1370

Red Cells          2.93         2.83         2.80

Platelets           23            22            8

ANC                                                 1206

 

And, the good news just kept coming.  He no longer has to take the liquid meds in the eclipse balls every night.  And, he will take his last dose of the four-hour antibiotic he receives in IPOP.  AND, if things donít change we will have the weekend OFF.  AND, once again, if things continue, we will be going on Monday, Wednesday, and Friday starting next week.  This is our first glimpse of any light at the end of the tunnel.

 

At this point, I jumped on the bed on top of him and just kept kissing his face.  Donít worry the nurses are all used to us by now.  I actually saw color return to his face.  Of course, that could have been from all the kissing.  J

 

We also had one of the nurses we really like and trust.  His name is John.  He used to work at CHOP when Tyler was there.  He remembers Tyler, Bill, and Maureen.  He is very good, very knowledgeable, and always on top of things.  The truth is that we are happy with most of the nurses.  I donít trust the one we had over the weekend.  I also am not happy with the one who does not speak English very well.  She smiles a lot and just says yes or something neither of us understands.

 

Our nurse practitioner Audra told us that the team would see Rick this morning.  They start at 10:00.  Rick preferred to wait until they had been there before he had any tea.  It was already 9:30.  I also didnít want to leave the cubicle.  I knew that would be the time they would arrive.  So, there we were.  I fell sound asleep on the little black chair.  Rick was asleep in bed.  He woke me about 11:00 to help him to the bathroom.  I described the little area we are in.  I finally had him free Ė Iím not sure how free you are dragging around an IV pole.  By the way, I think I only counted eight hooks on the pole.  The team arrived around 11:50.

 

I was expecting doctors.  The team is the research team who are looking for graft versus host disease. (Remember, this is a Phase II research trial Rick is having) We had to go to the regular unit where they have an exam room.  They will do this every Monday from here on in.  They explained skin rash, but we already knew about that.  Then the one doctor mentioned the liver and some other organ.  He said they would have to do a biopsy of the skin or the organs to be sure.  Okay, curve ball approaching.  ďHow do you do a biopsy of the liver?  He will be knocked out; wonít he?Ē  My mind is racing with vivid visuals of long needles and serious pain.  This will be a non-negotiable item!  He explained that Rick would be asleep and it is done during an endoscopy.  The panic attack is subsiding.  I think they also said that a bone marrow biopsy would be done on day thirty.  I think day one was the first day after his transplant.  There was no good news during this exam.  Well, I guess the good news was that there was no bad news.

 

It was past noon when we had him settled back in IPOP.  He asked for a bowl of chicken noodle soup.  No problem.  I walked to the pantry, but the cupboard was bare.  So, I just traveled over to the other side of the fifth floor and found some in that pantry.  Then I returned to our pantry to heat the soup.  Foolish me, I hadnít checked for bowls.  That cupboard was also bare.  I heated the soup in a Styrofoam cup.  I left the pantry with soup in hand and crackers in my jacket pocket.  I slipped back into IPOP and walked into Rickís room.  Much to my surprise (and Iím sure the guy who was there) Rick wasnít in the bed.  I apologized and quickly walked out the door.  I didnít look back.  I walked down the hallway and through the doors to the closest wing.  The only thing I know is that I am not in our wing and I donít know where I am.  Fortunately, one of the nurseís aides recognized me.  I think they know the ďlostĒ look on my face by now.  She just told me you want to be in IPOP and gave me directions.  Iím not sure how she did it, but she walked in the back door of IPOP about the same time I entered the front door.  Itís a good thing they all recognize me by now.  I should wear a sign that says ďIf found, please return to patient Richard Stubbins.Ē 

 

John was getting ready to start Rickís platelets when I returned.  I guess the day had just been going too well.  Rick likes to keep me on my toes.  He asked me to see if he had a hive on his lower back.  Sure enough there it was.  Except, it didnít look like his other hives he has had on his back.  I asked John to look at it.  He was having a reaction to the platelets.  John had to give him Benedryl through the IV.  He was aware of Rickís problems with that med in this form.  However, he didnít think we had time for the pill form to work.  Rick did end up with the restless legs.  I massaged his calves and that helped.  He had one more hive pop out.  John told him two hives were his limit.  Rick cooperated.  Rick was just really tired by the time it was all over.

 

While Rick was resting, I thought I heard John make a call about the hives.  The bag had to be marked and sent somewhere.  I asked Rick if he knew why that would have to be done.  Iím thinking that maybe something was wrong with the platelets.  He thinks it was because it was B negative.  Last time he had A negative.  He is O positive.  He thinks he may not be able to have B negative again.  Anyone out there know why it was marked and returned?  He also now has to take Benedryl in pill form prior to any platelet infusions.

 

The nurse practitioner had told Rick that she wanted an x-ray of his arm and shoulder.  I am relieved that they are finally trying to find out what is causing him so much pain.  We were all packed and ready to move on to the second floor for his x-ray.  It was still early.  The girl at the front desk had no orders for the x-ray.  We went back to IPOP and waited for John to reach Audra.  He found out that she was doing a bone marrow biopsy.  He let us leave.  We will just have it done tomorrow.  No big deal.