Merry Christmas

Christmas turned out to be great for us as we found out on Thursday that we would be able to return home for the Christmas holiday. We got in Friday night about 2100 & will return to LR on Tuesday.

Dr. van Rhee was extremely pleased with my response to the chemo. A number of key labs showed marked improvement and he was very encouraging as always. The chemo really knocked me on my ass for 4-5 days with the main side effects being fatigue and marked alteration in taste. I was sleeping about 22-23 hours/day – kind of just existing, plus one gets a strange metallic taste in the mouth so nothing tasted good – not even water. Baked potatoes and scrambled eggs really hit the spot however. The thought of some foods made me nauseated, especially coffee if you can believe that. I am just getting to the point where I can drink it again. I have no stamina and get winded with the least activity but the doc says my RBC count should begin rising pretty fast now that they knocked down the tumor mass. My last H/H was 9.7/29.1 and slowly rising. I had a couple days where I got behind on fluids and was symptomatic with dehydration and altered electrolytes but we corrected that with some IV supplements & fluids, water and Gatorade.

After the chemo was completed I began the routine of twice daily growth factor shots along with my daily blood work and 24 hour urine collections every Monday & Thursday. The way it works is they wait until your WBC count nadirs (drops then rises) above 2,000 they do what is called a Procount to check for potential adequacy of stem cells. During this time I was managed by a nurse practitioner. I never thought I would be excited to have a WBC count of 600 and then later 23,000 but I was.
We then harvested stem cells on Thursday & Friday, a process where they hook you to a leukopheresis machine for about 4 ½ hours and spin off your stem cells. It’s a pretty simple and painless process albeit very expensive. We were told it costs about $75,000 for each hook up to the machine. I don’t expect they collect that much but thank God for insurance. They collect about 20,000,000 stem cells. Apparently only 2,000,000 are needed for transplant but they collect extra for research and also in the event that additional transplants are needed. Some patients have received up to 6 transplants.

When we return I will have another PET scan & bone marrow biopsy, see the doc and then begin the vaccination series. Not that I like bone marrow biopsies but I am curious to see the percentage of myeloma cells after the chemo. I’m going to convince myself that these bone marrow biopsies are fun. At this point the protocol gets rather complex but my sainted wife has it all in her palm pilot. We go by the days from the start of treatment. Today is day #23. We should be home about half of January and then I will get my first transplant in early February. Apparently the chemo you get to kill your bone marrow is pretty nasty so we expect to spend most of February in LR. They give the chemo (high dose Melphalan) then exactly 24 hours later do the transplant. That whole process takes 3-4 weeks depending on how well you do.

I gotta say I feel pretty good and remain optimistic. Mary Jo has really carried the burden like a champ and has been nothing short of great, but it is very hard on her also as I have been pretty dependent. I can’t even drive. We did have a mild verbal altercation the other evening when she was under the impression that I was being grumpy and critical of her driving. I really did not know why she felt that way because I never get grumpy and would not think of criticizing her driving. Nonetheless to say her suggestion was that I take an Ativan before we started the trip home so I took one & slept half the way home.

Our kids are all here so we are having a wonderful Christmas plus the dogs have their own backyard again. I will see many of you in January as this trip I still have to be pretty careful. As my dear friend David says “It’s all bueno” otherwise and hope the same for you.