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July 14 2004 DAY #260


Greetings to all! My appointment today was really good. My blood counts are a little low, so I was worried about that. The doctor said it could be just normal variation or might be due to the CellCept. Overall, they are extremely pleased with my progress. I talked the doctor into letting me discontinue the blood pressure medicine, but I have to take my blood pressure at home on a regular basis. My blood was 51 yesterday! Happy birthday!

Lots of victories this last couple of weeks! Physical: Over the 4th of July weekend, I went on two hikes, both on uneven trails and both over 1.5 miles. I was really tired, and my feet were really painful by the time I finished. They were difficult for me due to the rockyness and condition of the trails. I had trouble balancing. Last Sunday, my feet were getting better. Menchie and I went on a 2 mile hike with over 500 foot elevation gain. My feet were still sore, but it was a lot easier for me. Dietary: I have eaten chili, salsa, wasabe, pizza, spaghetti, and sweet pepper sauce on Lumpia, all with no side effects!!!! Looks like my bland diet days are over! Psychological: I ate at buffets twice in the last two weeks! Employment: I will work 40 hours in this two week pay period. A new modern record!

I got a great link from my friend Bill. This link, , links to a game that is designed to help children (or adults) understand a little bit more about Leukemia. The game came about because a 9 year old leukemia patient named Ben, asked the Make-A-Wish Foundation to help create a game, rather than a trip to Disney World. The game is being developed with the help of Lucasfilm Entertainment Company, and is now in BETA testing. It is not very hard, but it is fun, and it certainly shows some of the problems associated with Leukemia in an entertaining manner. I highly recommend that you take a look at the site and download the game if you can. Ben is in remission now, and is doing well.

Alexis continues to struggle with infections and GVHD. Please remember her.

On the medical front, my feet are still bothering me. They are getting better though. The hypersensitivity is gone today, and the toes are just totally numb on one foot, and the other foot is almost normal. I can walk pretty well on them now that the balls of my feet are not numb. The doctor told me to watch out for poison oak and poison ivy. He doesn't know what effect my transplant might have had on my reaction to them. I have never had a problem with them before, but we don't want to risk it now. My creatinine was down to 1.2! NORMAL RANGE!!! Finally. That has been a huge battle. Hopefully it will continue to drop a little. My next appointment is in two weeks, and the doctor said he might start cutting my CellCept, the other poison pill that I take. Once I get off that one, virtually all the other medications can go away! I'm not too excited about that!

Lab Results

Blood Cell Type

Normal Low





WBC 4.5 6.3 4.1 3.8 3.9
RBC 4.20 4.10 4.46 4.08 3.91
HGB 13.0 13.0 14.2 13.1 13.1
PLT 130 207 235 221 189

Have a great day!!!


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