After the Transplant

Thinking back, the amount and potency of the chemotherapy that I received during phase one and phase two of my treatment were a pittance compared to what I received for my bone marrow transplant. During the first two phases I thought to myself, ha, this chemo stuff ain’t living up to all the hype. Sure, I lost my hair but it started growing back not too long after the end of each phase. And I never got so sick to where I had to become intimate with the toilet. Not so during the two weeks of chemo treatment before and after the transplant. The doctors really laid it on me with a vengeance then. I got pretty darn sick, especially in the mornings. It’s almost three months later and I would even say that I may still be suffering somewhat from the effects of the chemo I received prior to and after the transplant. And it doesn’t help any that I’m still getting a small dose of it shot into my spine every two weeks.

While I don’t get sick to where I have to pay homage to the toilet anymore, I do get some bad heartburn for a couple of days after the spinal taps. I also still get light-headed when I stand up and, because of my low energy levels, I can only contribute minimally to chores around the house. My counts are steadily rising to normal but they are all not there yet. My platelets are still low which makes it very easy for my skin to cut and bruise and very hard for the injuries to heal. I’m still anemic. It seems that I have a symptom of Graft Versus Host Disease (GVHD) in my mouth: it is almost completely dry all the time, which makes it hard to eat and sleep, and there are tiny bumps all over my cheeks and gums, which feel gross. I have poor circulation and swelling in my legs, especially my left leg. This is probably because the blood clots that I had at the beginning of all this were in my left calf and have left the veins and arteries a little worse for wear. The toes on my left foot are numb. My vision frequently blurs. And, I’m still mostly hairless which is really starting to annoy me; although some peach fuzz is starting to sprout about the chin.

Considering how bad I felt immediately after the transplant, all that I described above is almost irrelevant. I actually feel pretty darn good and I am very thankful for how well I am progressing and all of the support I am receiving. My days are always light and relaxing. I mostly divide my time between reading (my reading list is found at the bottom of this blog), cruising the Internet, taking naps, sitting by the pool, and watching the boob tube. I try to take long walks every other day or so. Fortunately I live out in the country so when I walk I get to experience the beauty of nature. I get to see wildflowers and woods and ponds and creeks and cows and horses and sheep and goats and all kinds of birds (if I’m lucky I’ll get to see majestic cranes either walking the creeks or flying above the tree line) and friendly folks along the way. My dog Shikibu, the best and cutest dog in the world, often joins me on my walks and she always makes them even more interesting and enjoyable. But probably the best part of my day is when, after the sun begins to set and the temperature cools down, my wife and I hop in the hot tub and spend quality time soaking, reflecting on our good fortune, and planning for our long future together.

It’s Not Lymphoblastic!

Today, during a visit with my doctor to discuss Phase Two of my treatment, my doctor threw me (as well as my wife and daughter who were with me for the visit) for a serious loop. He started off immediately by explaining that after further analysis of all of my tests, I now have, and always have had, Chronic Myelogenous Leukemia (CML) in Bilineal Blast Crisis instead of Acute Lymphoblastic Leukemia (ALL), which I was my original diagnosis. I am still stuck with the Philadelphia Chromosome abnormality. That has not gone any where.

Nothing changes though, as far as my treatment goes. I will continue to take the drugs that I have been taking for Phase One of my treatment (I still need to list those on my Treatment page), and beginning Wednesday, January 13, 2010, I will begin taking about four more additional chemotherapy drugs to bring my counts back down. After my counts are brought back down again I will have another bone marrow biopsy. Oh yeah, I must not forget the fun of another four lumbar pulls (AKA, spinal taps) during the upcoming phase. Fun, indeed. Better yet, it’s a Blast Crisis!

So, in the end, nothing really changes but the name. There are consequences for the impact on my disability claims, though. I have already completed the paperwork and identified my disease as ALL. I guess there will be some backtracking to do there.