Not a Fairy Tale

Since the beginning of the year, I've been living the fairy tale version of fighting leukemia. A scary monster appears, things look grim for a while, but, with grit and cleverness and magic potions, the monster is vanquished. True, there was more than the usual amount of vomit and shit than in your typical fairy tale, but it was still the (relatively) short story with the happy ending.

It looks like my story is going to be more like a novel, and we're only a few chapters into it. Maybe a short novel, maybe a long novel, but not a fairy tale.

Until June, I was following the shortest and best possible story arc: I tolerated chemo better than most, I tolerated the stem cell transplant better than most, my first post-transplant biopsy found no leukemia.

Then a biopsy in June turned up a little bit of leukemia, but I could still stay on the same arc by going off the immunosuppressant drug and having my new immune system clean up the rogue leukemia cells. It was possible I would need no additional treatment, just recovery time. That's the fairy tale version. It happens for some people.

But that is not my story.

I don't have exact cell counts from my most recent biopsy yet, but there are other numbers indicating that there is still a little leukemia. The number of blasts is slightly higher than normal (6.6% versus 5%). The number of platelets is declining (from 136 to 88 over the last month), and falling platelet numbers are an early warning sign of leukemia. No eyewitness testimony of leukemia, but strong circumstantial evidence.

The falling platelets, combined with the blood thinner I'm taking after my pulmonary embolism, make me bleed very easily. I have scabs on my hands and wrist from wounds I don't remember getting. There is another on the back of my ankle that I do remember getting. We have carpeted stairs, and the back of my leg grazed the front of a step on the way down to the next step. For most people, that's at worst a tiny rug burn. For me, it's a wound bleeding into my sock.

Back to the root problem, the chemo didn't eliminate the leukemia, and the gradually strengthening new immune system hasn't done so, either. What's next?

Most likely, I will start another course of chemo next Monday (August 22). Might be a five-day course or a seven-day course, probably done as an outpatient here in Champaign-Urbana.

This chemo treatment is, according to my doctor, much less potent than what I had in the hospital. The goal then was to wipe out all cells in the marrow, both to eliminate the leukemia (which it almost did but not quite) and to prepare the marrow for the stem cell transplant (which it did). The goal now is to knock down my blood counts enough that my new stem cells go into overdrive and churn out an oversupply of lymphocytes. Then we will watch blood counts carefully for the next several weeks to see, we hope, stabilized or improving platelet counts. If we see that, I'll do another round of chemo, and then a biopsy to see where I am. If not, then we're onto another treatment and another chapter.

I'm not sure why more lymphocytes will be better at finding rogue cells than are the nearly normal number of such cells I have now. My understanding is that lymphocytes either do or do not recognize other cells as being unwelcome, in which case numbers wouldn't matter, but I must not understand what's going to happen. I'll see what I can learn about that.

I do know that flooding the system with lymphocytes, no longer held in check by immunosuppressant drugs, increases the risk of graft vs. host disease. So we'll need to keep careful watch on my skin, eyes, liver, and intestines. I may already be exhibiting a little GVHD already, as my scalp and to a lesser extent my face are kind of itchy and flaky.

Meanwhile, I had my best run of the year today: Ladders of decreasing length, for a total of 35 minutes jogging. Even on the longest interval, I didn't reach muscle failure, and my heart rate fell pretty quickly back to around 120 during the walk breaks. In other words, some training effect! Finally!

1 1 2 1 3 1 4 1 5
2
1 1 2 1 3 1 4
2
1 1 2 1 3
2
1 1 2 1 1

At the 5K mark, I noted the time: 40:50. That's for a mix of jogging and walking, and it gives me a benchmark measure of training intensity.