I am writing on the evening of January 22, 2003. I leave tomorrow for Omaha, Nebraska where I will begin the SCT process. It is about a 4-5 hour drive from our home in Nevada, Missouri. I will be admitted to the Lied Transplant Center, which is a new facility that incorporates "cooperative care". I have three sisters that are going to rotate staying a week at a time. If I am there more than three weeks, I guess we will draw straws. My husband and children will be driving up each weekend to see me. It is very important that my husband stay home with our kids to try to keep things as normal as possible. I have a bone marrow biopsy when I arrive tomorrow and my sister will take a class about being a cooperative care partner. The next day will be another day of various tests and a doctor visit. I will still be free to leave the center that evening, so I am looking forward to a nice dinner out with my family. On Saturday, January 25, I am scheduled to begin the BEAM chemo which is given over a six day period.
Debbie Walker age 44
dx June 2000 Mixed cell(primarily large) follicular stage IVa
CHOPx8 Rituxinx4 June 2000-January 2001
Stem cells harvested/stored January 2001
Radiationx20 February/March 2001
Complete Remission April 10, 2001
Relapse confirmed 10/02 RICE x 2 SCT begin on January 23
This is my first day at the Lied Transplant Center. I had a bone marrow biopsy today that "was a piece of cake". I already love this place. I had labs drawn, an EKG and a chest x-ray. My sister attended a two hour class about being a care partner. She got a lot of good information and feels much better prepared to be with me now. All in all the day went smooth. Tomorrow will be another day of appointments and preparative work.
Deb is receiving her first infusion of BEAM as I write. I thought this was interesting: They mix this first batch with alcohol. She's never drank anything stronger than iced tea in her life! Anxious to see if I have to tail her up to get back to the room! All is well. Skip
I had a free morning and that was nice because my husband and kids were here. Skip and I had more instruction this afternoon from the cooperative care nurse. About 4:00 I began my first chemo that lasted about two and a half hours. (BCNU 500 cc-pretreatment of an i.v. dose of Zofran). It was very uneventful and I felt fine when finished. We ate dinner and that tasted good. They had cautioned me to watch for a headache because of the alcohol solution mixed in with it. I noticed a small headache coming on about 10:00 so I took a Darvon which did the trick. Was a restless night in anticipation of tomorrow. Will talk to you then.
Hello, Teri and I shared a treatment room this morning. I was receiving chemo and she a transfusion. We had a good visit. It sure is good to have a friend to talk to here. I began my "two a days" today. I am getting ARA-C and VP16. I got along well except for a rash/flush that came on my face. It began to appear about one hour into the infusion. They slowed down the drip and gave me a dose of IV Benedryl. This evening I will take the same chemo, but they will begin with the Benedryl this evening. That is a good idea to me. I rested this afternoon. Even slept a bit. Probably a result of the Benedryl. Need to go to begin my evening "work". Enjoy the Super Bowl!
I am into my third day of the high dose chemo. This morning I received the ARA-C and the VP-16 again. The same as yesterday. I will get it again this evening. Due to the reaction I had yesterday, they now premedicate me with benedryl and slow down the infusion. It has taken care of the reaction but makes my time in the treatment room longer. Oh well, I can read the magazine in the treatment room as easily as up in my room. Each infusion takes about four hours from start to finish, so my day and evening is quite full. As of yet I have nothing unusual to report. I feel very normal and still have a good appetite. I do mouth care four times a day. I use these little sponge things to wash my mouth out with a saline solution, then suck on a Mycelex tablet. I realize that I am a few days away from mouth sores though. I spoke with Teri's husband a few minutes ago in the library and he said she is doing well. I know she is tired, but she looks wonderful and it is so nice to see her. We both agree that this is a nice facility and we certainly like the freedom that we have here. They make you an active part of your own care. It is probably a bit unorthodox in comparison to other transplant centers, but it is nice. Will write again tomorrow!
I woke up with a queazy stomach this morning. Zofran helps a lot! Food is starting to taste questionable. I really prefer cold and fruity things right now. I just finished my four hour stay in the transfusion room. We ate lunch and I plan to nap this afternoon. I will be back in the transfusion room for four more hours this evening. Tomorrow is my last long chemo day and I will be most thankful. No mouth sores or diarrhea yet. They continue to remind me that I will probably have all of that to look forward to. I asked for a laxative this morning, but they said in a couple more days it will resolve itself. All in all things are going well. I can tell that I am on my way down, but nothing too earth shattering yet. I was glad to see Teri looking so well this morning. She said she felt great today, so that is good news.
It is midday and I just finished lunch. Nausea was not as bad today. Zofran and Ativan together take care of it quite nicely. Today is my last day of ARA-C and VP-16. I will be glad. I have a short chemo session tomorrow morning, then have the rest of the day off. Friday is my transplant day. The most difficult part of this whole thing so far has been missing my family. I feel like I am in a movie or something. It is a little weird to not be outside and going about normal daily business. As of yet my counts are holding steady, but will begin to drop anytime. I have had no fevers, but that can also come when the counts drop. They check me frequently for mouth sores, but none yet. Thanks for reading about my SCT.
This morning I finished my sixth and last day of high dose chemo. I received 100 cc of Melphan. It was just a thirty minute infusion, so I am free for the day. I continue to take Zofran and Ativan for nausea as needed. I also do the 4 times daily mouth care with saline swabs and Mycelex tablets that dissolve in my mouth. As of today my white count is down to 2.7 and my hemoglobin is 9.8. I am still in good shape but know that they will be zero in a couple of days. Tomorrow is transplant day! I will have four hours of hydration and get premeds of Benadryl, Ativan and Darvon. I have five bags of cells to infuse so they estimate that it will take 1 hour. Then I will get four more hours of hydration. One nurse said that it is an exciting day because "it marks the end of my therapy and the beginning of my recovery". I liked the way she said that. They said I will probably sleep the day away. I may write something goofy tomorrow if I write at all, so be ready. (lol).
January 31, 2003 Day 0 Transplant Day
This was a sleepy day. I received four hours of hydration before the transplant. Got premeds ad 9:30 a.m. (Benadryl, Ativan and Demerol). Received my five bags of cells at 10:00-11:00. Ii was very drowsy and things went quite smoothly. After that I received four more hours of hydration. Did well except that I was very nauseous in the afternoon. I even threw up which I never do. Didn't really eat all day except a bite of breakfast. They said that the nausea comes from the preservatives in the storage process of the cells. And yes, I do smell like creamed corn. My family could smell it, but I couldn't I also received my first growth factor shot. I was also given a nausea patch today. Teri has one and feels like it is helpful.
Rested sort of good last night. Had back pain that may have just been a result of lying down all day or just receiving the Neupogen shot. My counts are still holding, however my white count is down to 1.1. That is exactly what it is supposed to do. And I know that soon my hemoglobin count will drop and I will feel very tired. The rest of the day is mine. My family is coming and I will just sit and enjoy being with them.
I don't mind telling you that I feel very crappy. My counts have bottomed and I feel very nauscous all of the tinme. They started to give me Redlan today for the upset stomach. It helps but only time will take care of it. No appetite, but am able to drink. Since my AN is below 500, I not get i.v. antibiotics twice a day. The journey continues..
Today has been a busy day. Last night at bedtime I turned in the bathroom and put my back out of place. I have done that before, but it sure was stinky timing. I have been taking pain pills for that and have had to apply ice packs to my back. This evening it seems better, but I will continue taking pain pills as long as necessary. I received two units of blood this afternoon. My nausea has been slightly improved today, but is far from gone. I am exhausted, so won't say any more. Hopefully, tomorrow will be smoother.
Was very nauseous this morning. Had to take it slow. Slept all afternoon. Trouble eating but they have started me on Boost. It isn't too bad. Quiet day and restful day since I didn't need any blood products. Will write tomorrow and hopefully feel more like writing.
Today has been a good day. My counts are hovering at a safe level, so I again had the afternoon off from transfusions. I like these days. I took a long nap and forgot all of my troubles for a few hours. My mouth sores are minimal, but are there. Swallowing is hard and painful. I use Myselex four tmes daily, and have added the "Magic Mouthwash" at eating times. It numbs your throaat and lets you swallow less painfully. No fevers yet either. I am keeping my fingers crossed. I apreciate all of your support. Thank you!!!
I had fully intended to write each and every day. However, On Day 6 I hit a brick wall and haven't done much but sleep. Unfortunatlly my throat and esophugas were raw with sores. Eating has been nil. I have about as much energy as a slug. I have received and platelets twice. No fevers and nothing out of the ordinary. Aanother bit of bad luck was when I turned incorrectly and put my back out of place. It is also much better, but sure did add to the fun. Today, February 9, is much better. The nausea has about left me and I can read and watch a movie now without sleeping. My kids were here today, so that was some very good medicine. The docs told me this morning that I am exactly on scehdule and we will eagerly watch for those while cells to get busy. Sorry for the long delay. The trip down to the resource center was jus too much for the last few days.
Today I am feeling better. My hemoglobin has been hovereing around 8.0 for about three days. Finally today I got two units of . I feel better but am exhausted from being in the treatment room so many hours. They have given my oxycodone for the sores down in my throat and esophagus. My big goal is to try to eat 1000 calories a day and drink one liter of fluid. Right now that seems like a lot!
The dad has started well. I slept very well and this morning my mouth pain is much better. Hooray! My white cell count is now .5. That is simply a start but it is better than nothing. I don't need any products today so I have a free afternoon. My mouth is SO dry and everything I try to drink is salty tasting. I can't wait until I can guzzle down a diet Coke in one big gulp. Thanks for reading and responding. Thanks also for the beautiful cards that have come from the group. This is an amazing group of people.
This has been a wonderful day. My white count has gone up to .9 and I made a few platelets and red cells. My throat pain is significantly improved and breakfast actually tasted good. Our bodies truly are "wonderfully made". I am still getting daily Neupogen shots and take an i.v. antibiotic Cefalin (sp) twice a day. They are planning to stop the antibiotic and will stop the Neupogen when my ANC reaches 500. Today it was 225. The current plan is that I will be released from the cooperative care floor by the end of this week and sent to a "hotel" suite for a few more days. The reason they don't send patients directly home is that they want to observe you closely and see that the counts are holding without the help of . On the floor I am at now, someone just had a transplant because it smells like corn. (The preservatives in the cells cause the smell.) It has been a pleasure to share my good news.
This has been a big day for me. This morning I was released from cooperative care and will spend a few more days on the hotel floor. Basically, that means that I don't have to see the doctor every day and get to quit measuring all of the "ins and outs". My white count is 1.9, hemoglobin 10.0 and platelets 20. As I mentioned yesterday, I am not setting any speed records. I feel very fine, but tire easily and have to continuously be sipping on something or my mouth gets dry. When I lay down I have a real dry annoying cough that is a nuisance. The doctor said we would watch it. He basically said he didn't know why I would have a cough. I will continue to write a few more days. Let you all know then I can go home.
I have been unable to get into the email account that I write to the group with, so I will try to give a quick update. I was released from cooperative care on February 14, 2003. I have had the last three days as a "normal" person while staying on the hotel floor, like Terri. I see the doctor tomorrow and am praying that I will be released to go home. I will let you know. I can't tell you what it has meant to share this experience with you. I appreciate your words of encouragement and prayers. I hope that the next time I write I will be in my own home.
I got home yesterday evening. After the five hour drive, I was worn out. It felt so good to be in my own bed. I slept until 9:00 a.m. this morning. I am trying to do some light house work and cooking, but really run out of energy quickly. I hope that my stamina will return within a reasonable amount of time. Before dismissing me, Dr. Vose recommended that I have radiation to my arm where the relapse occured. She said this would be good "insurance". I was so in hopes that I would get a break. How many of you have had radiation after the SCT?