Today marks a week that I’ve been off the chemotherapy drugs I’d been taking for four months, and I’m finally starting to feel more normal, almost back to my old self. I knew the chemo drugs were causing me fatigue (which is now thankfully almost completely gone), but I didn’t realize how much they were affecting my brain. As it slowly started to lift, I realized that I’d been living for months with an almost physical feeling of thickness in my head, a miasma, a pollution, a cloak of dullness and sluggishness. I’ve heard the term “chemo brain,” and I think this is what it is trying to describe. That is mostly all gone now, my head is clearer, my stamina is improved, my mood is close to being back to its normal level.
But for all its negative impacts, the chemo worked. My last kappa light chain reading (you knew it was coming, didn’t you?) was 18.3, within the normal range, and a second test for the presence of the cancer cells, which reads the level of Beta-2-microglobulin in the blood, was at 1,688 ug/L, also within the normal range. I had a bone marrow biopsy done after the end of chemo, and it found that the deviant cancerous plasma cells represented only 5% of the cells in my bone marrow, compared to 50% before I started treatment. The doctor says this represents an excellent response.
Not everything is back to normal — my lower left leg and foot are still not right, and are still slightly numb and painful, the result of nerve damage from the tumor, damage that may (or may not) eventually heal, and the stress fracture in my left pubic bone is still not 100% healed, which I’m reminded of every time I take a step. But wow it feels good to be un-chemo-brained. And for the next 3 weeks, I’ll be free of all treatments. Free to enjoy the summer, to work a bit more, to up my visits to the gym, and to continue to heal, without the chemo drugs dragging me down, including the big dose of steroids I was taking, which, as one doctor said to me, eats up muscle and bone.
Three weeks to get ready for the next step, the bone marrow transplant process at Stanford, which starts on June 27. I’ll share more details of that in a later post, but it will be a difficult challenge, with lots of smaller discomforts and one 2-3 week period of pure misery. As I think back on what I’ve gone through since December, I am amazed that I was able to get through the extraordinary pain I suffered; to maintain my equilibrium through times when simply walking across a room hurt intensely, when it took all the will I could muster to get up out of a chair; to deal with waking at 3 a.m. in so much discomfort that the only choice was to get up; to live with barely being able to take a shower, put on my socks or my pants, or sit in a car; to be almost an invalid. Horrible, horrible, horrible. But having lived through that, I know I can get through the bone marrow transplant, where the “pure misery” period is of a duration both limited and known.
For the next three weeks, I’m going to enjoy feeling like myself again. Actually, I may feel better than myself: The doctor at Stanford said that it’s entirely possible that the cancerous plasma cells had been building up in me for 3 or 4 or 5 years, so it’s possible that some of the “slowing down” I’d been feeling in the past year or two — which I attributed to getting older — was due to the deviant plasma cells that I didn’t at the time know I had in me. A bizarre thing to consider.
I’m grateful to live in a time and a place where cheating death is somewhat routine, grateful that my type of myeloma is one that responds well to treatment (not all do), grateful that I have the most wonderful, amazing, caring wife in the whole world, grateful for my boys and my super friends and co-workers, who have shown me more care and affection than I thought possible. Most of all, I’m grateful that, in spite of the challenges ahead of me in 3 weeks, now, for the first time, the end of the process is in view. Yippee.
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