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August 19, 2004 DAY #296


This has been a great day at the doctor's office! In the past three weeks, I have had no blisters, fevers, rashes, nausea, headaches, colds or any other significant medical problem. My hemoglobin and platelets are way up, but my white counts dropped some more. The doctor wants to watch that so I have to go in to the lab every two weeks until further notice. I won't see the doctor again until the 16th of September. One month!!! The doctor took me off Cellcept and Pepcid today. All I have left is Mepron and VFend. On the weekends, only two pills a day! I can quit logging fluid intake, quit taking my temperature twice a day, and quit taking my blood pressure. My life is returning to normal! The doctor grudgingly gave up that my long term survival probability stands around 75-80% at this time. A huge improvement over what it was a year ago!



The last three weeks have been incredibly busy and exciting! My keynote speech was a great success for the Light the Night Walk. All of the coordinators for the Team in Training events want me to come and speak to their teams. I am available at any time! That weekend, Menchie and I rode our bikes about 15 miles. Half on Saturday, half on Sunday. The weekend after that, we rode 20 miles with our Tour de Tucson cycle team on Saturday. Last Sunday we rode 30 miles! This weekend we are going to try for about 40 miles riding up the coast to Carlsbad. We continue to volunteer at the Leukemia and Lymphoma Society. So far this week I have worked over 33 hours. I was interviewed on Tuesday, August 3rd by the San Diego Union Tribune, with parts of the interview appearing in the lead story of the Business section the following day. The article can be found on the web at

. I was interviewed this morning by the producer of a TV show called Wealth on Health for a series of shows on Stem Cell Research. This is a new TV channel called Wealth TV, available nationwide on the Galaxy 13 satellite. It is not on cable in most places yet. A camera crew will be coming to our house to interview Menchie and me next week, and we will go with them to the hospital for more filming there. My internet mall is partially up and running. It is a lot of work to get it set up, and I am trying to do a couple of pages each day. The URL is

. It is not finished yet, but if you need to buy something on-line, please click through my mall and help save some lives. I have also attached a copy of the flyer for the Mall. Forward it to all your friends! Menchie and I have also represented the Leukemia & Lymphoma Society at another blood/bone marrow drive and a health fair put on by a local congresswoman.

On the Medical Front, no changes to my neuropathy. My doctor said I could try high doses of Alpha Lipoic Acid to see if it might help. Lower doses did not, so I quit taking it. I would like to try a much higher dose. I am completely off immunosuppressants now. What a wonderful, scary feeling! RBC and HGB are well into the normal range, and higher than they have been since this whole thing started. We are hoping that getting off CellCept will help bring the WBC numbers up, since it supresses the bone marrow. My weight is still dropping slowly. I am very pleased. Overall, I feel great! Can't walk very well, but I feel great! My hair is almost back to normal also!

Lab Results

Blood Cell Type

Normal Low





WBC 4.5 3.8 3.9 3.6 3.3
RBC 4.20 4.08 3.91 3.90 4.47
HGB 13.0 13.1 13.1 12.6 14.2
PLT 130 221 189 195 202

Take care, everyone! Live Strong!


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