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July 29, 2004 DAY #275


Greetings to all! My appointment was really good again today. My blood counts are still a little low. I also had some blisters on my hands in the last couple of weeks. They dried up, but the doctor wants to know if they come back again. There is some sort of rare syndrome that causes blisters with sun exposure. If I get them again he wants to do a bunch of lab tests on me. My feet are not getting any better, it seems like. A couple of people have convinced me that I should get a handicap placard for my car. I have met a couple of guys who have had peripheral neuropathy for 5 years from their treatments. One guy is on full disability because of it, and the other is a business owner and can put his feet up on the desk whenever he wants.

My stomach seems to be made of cast iron now. I'm eating everything except milk. This is soooo much fun! I've had lots of Mexican, barbeque, wasabe and other spicy stuff. Two blue cheese burgers! MMMMmmmmmm. It is great!

Menchie and I are very busy! I have been accepted as an Honored Teammate for the Team in Training Cycle team for the Tour de Tucson. I am just a cheerleader and motivator for them. Menchie and I will start training for the 100 mile Solvang Century ride in March of next year later this year after the Light The Night Walk is over. We have done some riding, about 6 miles, we think. It was weird stepping on the pedals and not being able to feel the pressure of the pedals on the bottom of my feet. I got clips so my feet stay on the pedals. We have also done some hiking. The longest hike so far is 3 miles. After that hike we went to Costco for another hike. We also spent an evening at Sea World as a guest of Charles Hostler and the Hubbs Institute. It was a great evening, and we did a lot of walking around. Painful, but fun.

We are still looking for team members and funds raising for Team Mzima and The Light The Night Walk. To help, we have gotten on-line payment pages where donors can use their credit cards to make a donation. These are provided by the Leukemia & Lymphoma Society to all registered Light the Night Walkers. We will also have to raise large amounts of funds for the Team In Training ride. To accomplish this we are working on several avenues. We just signed up to have an Internet Mall on our web site. This mall will have over 1000 stores in it. The idea is that if you have a club, home, church, school, business or office you live, work or play in, and you occasionally buy things, for one of those places, you can buy it by clicking through my mall. I get a comission on every transaction my web site generates. These are not necessarily unknown stores either. Places like Office Depot and Office Max to name a couple. You can get home loans, furniture, clothes, beauty items, office items, gifts, home furnishings and just about anything else you can think of there. If you are going to make a purchase, please consider purchasing from the same store by going through the link in my mall site. We will send out another email announcing the URL of the mall when it is ready, with more details. We would like you to share that announcement with everyone you know, so we can use as many people's normal purchases to help find a cure for blood cancers. We are also going to start raising funds at restaurants. Everyone needs to eat, so we are just asking people to hand the cashier a flyer for us when they go to the restaurant. We want to make fundraising easy for everyone. Part of your daily life.

Saturday I am giving the keynote speech for the Light The Night Team Captains Kickoff. I am really looking forward to that. I think everyone will enjoy what I have to say, and get really motivated. I am probably going to wear my Navy Summer White uniform. I think neuropathy will be a good thing there, since I won't be able to feel the shoes pinching my feet! If you need a speaker, I am available.

On the medical front, my creatinine was still at 1.2. The doctor reduced my dose of Cell Cept in half. YEAAAAAAAAA. My next appointment is in three weeks, and hopefully then I will be completely off immunosuppressants after that appointment, assuming nothing bad happens in the interim. The doctor said I could shoot, do woodworking with a mask, ride my bike (not mountain biking though) and work as much as I want. Other than the constant irritation of the feet, I feel great!

Lab Results

Blood Cell Type

Normal Low





WBC 4.5 4.1 3.8 3.9 3.6
RBC 4.20 4.46 4.08 3.91 3.90
HGB 13.0 14.2 13.1 13.1 12.6
PLT 130 235 221 189 195

Have a great weekend!!!


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