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April 28, 2004 DAY #183


This week has been an interesting week of anniversaries. The 25th was 10 months since I was diagnosed with AML, the 26th was our 4 month wedding anniversary, the 27th was my 25th commissioning anniversary, and the 28th was my 6 month "birthday"! Lots of milestones. We have been busy again the last two weeks. Lots of work for both Menchie and I. Actually, we made 3 trips to the hospital in the last two weeks, so we got the hospital fix. We visited friends who were there; there was a support group meeting, which was great; and we went to the 24th Anniversary transplant reunion at Scripps. The reunion was interesting. When I was getting my first chemotherapy, there was a family who came every weekend and had a "picnic" in the lounge next to my room. They would bring barbeque and corn on the cob and the whole shebang. The family would gather and have a great time. It turns out that the patient that this family was supporting had a transplant on the 4th of July, one of the big picnic days. This patient was the speaker at the reunion. He is cured and completely off all medications! He had a real hard time before his transplant. He overcame!

I also visited the Leukemia and Lymphoma Society chapter here in San Diego. I have been encouraging you all to become stem cell donors, but I have wanted a way I could do something also. A way to give back a little of what has been given to me! The Society has a program where people who are just diagnosed with Leukemia or Lymphoma are contacted by someone like me who has been through it all. Menchie and I will be going through the training for this program in May. We will also be receiving "Ambassador" training, so I will potentially be one of their speakers, they send out to groups who want a presentation. That would be neat. The society also has a fundraising program called Light the Night. You will find a link to the Light the Night web page on my web page, I will be forming a team and trying to find sponsors to raise money for cancer research. I will send more on that in a later update, but I would welcome anyone who wants to join my team by walking or sponsoring us financially! I always wondered about how people picked their favorite charities. I guess you don't. They pick you. It is exciting to have a way to give back some of the gifts I have received.

Reducing the Cyclosporine did seem to have a positive effect on the pain in my feet. I have pretty much quit taking Ativan. I found out that Ativan is one of the things you can use to treat neuropathy like I have in my feet. Since I stopped taking Ativan, the pain seems to have gotten worse. So it has gotten better and then worse, so I am in about the same place. It is not unbearable as long as I can keep my feet elevated or keep walking. My face has been recovering from taking Prednisone, becoming less puffy. I had a few food induced stomach upsets, but nothing real bad. I looked up the symptoms of lymphoma, since my treatments make me more susceptible to it. Turns out I have many of the symptoms. I pointed that out to Menchie and she got mad at me. I scared her. I was bad. Menchie punished me. The doctors are keeping an eye on that, of course.

Lets see, my visit today! Hemoglobin is still just shy of normal, but the doctor said he would give it to me. RBCs are normal! First time for that in a looooong time. WBC is normal. Platelets are still normal. Creatinine is still 1.5. The doctor doesn't want to cut down too fast on the cyclosporine, so I have to go another two weeks at the current level. Bummer! Because I was so crestfallen at that news, he offered to discontinue the potassium. He doesn't want his patients getting depressed. A happy patient is a healthy patient!

On the medical front, I am off Potassium and Ativan. No other changes. Everything is going well. Noooo Prooooblems. There might be some intestinal GVH occurring, but it is hard to tell. I need to cut down on the spicy foods a little.

Lab Results

Blood Cell Type

Normal Low





WBC 4.5 4.5 4.9 4.4 4.7
RBC 4.20 4.00 4.01 4.18 4.37
HGB 13.0 13.2 13.4 13.8 13.8
PLT 130 196 213 206 245

Be Well!


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