July 29, 2007

Its day +178 today. I don’t know how much longer I will use this counting system. When I get my second transplant, it will be at day +196 after the first transplant. However, I’m not sure whether I’ll be counting from the second transplant or the first. I hope the count starts over. My fingers and toes are getting sore from all of the counting.

Tomorrow is my last visit to the clinic before being admitted to the hospital on Thursday to start the conditioning chemo and transplant procedure. I’ll start my chemo on Thursday and the transplant is scheduled on August 16th, 14 days after the chemo starts. My donor is being worked up currently for collection on August 14-15.

I get less and less excited about going to the hospital every time. This time is no different. I am weaker each time I go in (and get out). This time is no different. This morning I weighed 173 pounds. I can’t remember when I weighed so little, probably in the 5th grade. A good weight for me is about 230 so I’m down quite a bit from normal.

The reason for the weight loss is probably that the multiple rounds of chemo is taking a toll on my gut. Also, I think I’m dealing with some GvHD. I’m not taking any systemic steroids or immune suppressant drugs so the GvHD is not being suppressed at all. The doctors are not sure the exact cause. I guess that is another example of why its called practicing medicine.

To make things more interesting Barbara’s lower back has been extremely painful for her. She tweaked it last Thursday and it is being slow at getting better. Because of her temperament she is not giving it much of a chance to heal. We are quite a pair hobbling around the house. Tomorrow is the first day that Barbara will not be taking me to the clinic. A good friend will be taking me for her.

I solicit your prayers. Going into this treatment I was quite sure that it was God’s will that I do it. Because of my weakened condition I am not as confident about getting through this round of treatment in relatively OK shape. God is in control for sure. However, I need a touch from Him to help strengthen my faith.

July 20, 2007

It is day +169. I just received a phone call from my doctor. The preliminary report (pathological) from the bone marrow biopsy last Monday shows no evidence of any leukemia in my marrow. The thorough report (cytogenetic) is a couple of weeks away. The first results tell I’m in remission and the second results how deep the total remission is. The first results are good news because with a remission the second stem cell transplant will have a much greater chance of long term success.

I will go into the hospital on August 2nd for a round of conditioning chemo. On day 14 after the start of chemo (August 16) I will receive the transplant. Then it is a long time of waiting, healing and recovery. I don’t know how long I’ll be in the hospital for this treatment. I hope not over 4 weeks.

Right now I am suffering with a lack of appetite and a lot of nausea. It is concerning not being able to eat and yet I continue to lose weight. I’m concerned that I’m going into another major treatment phase while only weighing 178 pounds, instead of 220.

There are several possible reasons for these symptoms, such as GvHD, effects of the last chemo, effects of having multiple rounds of chemo. I haven’t gotten a straight answer as to how we can attack the problem. There seems to be a lot of anti-nausea medicines to mask the problem, but no treatments to treat the source. I’m working on it.

Lately has been the lowest point for me emotionally. This process is getting quite long. I can’t express how important or helpful your prayers are. Please keep them up.

July 12, 2007

Its day +161 and I’ve been home from the hospital for 6 days now. What a blessing. I’m eating better and feeling a little stronger. Being at home is a night and day difference from being in the hospital.

My counts are doing great. They continue to get better each lab. On Monday I’ll get another bone marrow biopsy to assess the condition of my marrow. If the marrow is still clear of blast cells, then that will be a great sign. If the leukemia is present that would mean my chances of the upcoming transplant eradicating the leukemia are slim. This is a crucial test and I’m hoping for clear marrow. Only God knows what the outcome will be. Even though I have my preference, I hope I’m trusting God to be in control.

The process and timing of my future treatment is that I’ll check in on August 7th or 8th for a round of conditioning chemo. (Round of chemo – makes it sound like I’m stopping in at happy hour for a quick drink.) The donor is being worked up now with the collection date of August 14-15. I will receive the transplant on August 15th. After the transplant is more hospital time until my counts rise again.

Time, on one hand, inches by each day. However, I can’t believe it has already been 6 days since I came home. We are so blessing to have a home when many families don’t.

My being home has been such a relief for Barbara. We still go to OHSU 2-3 times a week for labs. However, being at the hospital every day was very hard on her. Perhaps my weakened condition added to her stress. Barbara has been a real saint as far as her being my caretaker. She is wonderful.

I again am trying to express my thanks for your prayers and friendship. Words just can’t express my feelings. Please continue to pray for God’s will in my situation.

July 7, 2007

Today is day +156. It is Saturday, July 7th. I am pretty sure that I’m going home today. My counts started going up on July 3rd and quickly continued so that yesterday they were high enough to go home. I’m really excited to go home.

Now it is go home and gain strength for the conditioning chemo and second transplant. It sounds like the transplant will happen sometime in early to mid August.

I need to get ready to go now so I can go when they give me my release forms.

Thanks for your prayers. They are working.

July 3, 2007

Well its day +152 today. I’ve been in the hospital since June 11th so I’m getting pretty bored. The only real side effects of the chemo are that my stomach is a little queasy and I’m physically weak. I’m stuck here because my white counts have not gotten high enough to go home. In fact they are still at rock bottom. This is normal for the chemo I had. I should be going home about July 12th. It is getting pretty boring here but it could always be worse.

There is really nothing new to report. I’m just hanging out and waiting for my counts to rise.