On Friday, April 6, I was diagnosed with acute myeloid leukemia. This was completely out of the blue – I had no symptoms at all. The suspicion was raised as a result of a pretty routine blood test and then confirmed by a bone marrow biopsy. Given my age and the details of the mutations involved, this is not the kind of leukemia that can be kept at bay by periodic cycles of chemo and remission. The only real approach is to try for a complete cure through intensive chemotherapy followed by a stem cell transplant which basically gives me an entirely new immune system. The whole process is fraught with potential problems ranging from glitches to set backs to catastrophes, but there is a non-remote possibility that at the end of the process I’ll be fully back to normal. That’s my plan!
We decided to have the treatments at the Froedtert Hospital of the Medical College of Wisconsin in Milwaukee rather than in Madison. I activated my doctorly networks as soon as I had the news – my brother-in-law at the University of Florida medical school, and two doctors in Madison. They each talked to the hematology oncologist they knew with whom they had the most confidence. And all three said that the Medical College of Wisconsin was the place to go for stem cell transplants. I managed to get an appointment for consultations on Tuesday, April 10, with the lead doctors in both the hematology oncology team and the transplant team, and felt extremely good about them as people as well as their approach to the whole endeavor. We could have still done the first phase of the process in Madison, but it seemed better to have everything in one place.
The steps in the process, as best as I can tell, are:
1. A month of chemo, which began April 11, to produce a remission, defined as no longer detectable cancer. The chemo in this phase has a newly approved slow-release formulation which mutes the side-effects while still being more effective. So far, no nausea and no hair loss. If I get a full remission, then I move on to step 2. If not, repeat step 1.
2. 4-6 weeks of recovery from the chemo. If the cancer recurs in that period, go back to step 1. If not, on to step 3. To get the information requires bone marrow biopsies. As a psychologist friend of said, alluding to rat studies, “I wouldn’t press a bar for it.”
3. The stem cell transplant. This involves finding a match from a registry of 27 million donors worldwide. As I understand the process, there are eight specific genetic markers, so a perfect match is 8 for 8. One doesn’t need a perfect match to survive, but it reduces the chances of graft/host disease. Assuming an adequate match is found, then my entire immune system gets wiped out – not just the cancer cells, but everything. This is the kind of powerful high-side effect chemo that I associate with chemotherapy. This is going for broke. If the transplant fails, then that’s it. This is like getting a heart transplant: once the old heart is gone, the new one is what you have. With a good match, then the success rate is pretty high. All of this involves another month in the hospital.
4. Following the transplant hospitalization, we will have to live in Milwaukee fairly close to the hospital for 45 days because we will have frequent outpatient appointments, and there is a significant chance of infections requiring rehospitalization during this period. The big sources of catastrophe are infections and graft-host disease. More bone marrow biopsies. This, more or less, takes us to the end of the summer.
5. If I make it through 4, then we can return to Madison, with lab work being done in Madison, and periodic trip to Milwaukee for clinic visits for six months or so.
6. By sometime next spring, back in the saddle!
I am now in the midst of step 1 of the treatment. As the lemming said in freefall half way down the cliff, "so far so good." When I wrote this to one of my students, he replied immediately: fortunately there was a trampoline at the bottom of the cliff. I’m feeling hopeful, and even optimistic, but of course there are so many ways this can be derailed that I also try to be cheerfully realistic. What I absolutely will try my best NOT to do, is let the prospect of dying in the next few months contaminate the time while I am alive. We all die. That’s not news. And the one thing I know for sure that while I am alive I’m not dead. So why spoil it.
I like to think of this as an expedition into an unknown wilderness with perils rather than a catastrophe from which to be rescued. I still have no plans to retire when I get through this adventure and hope to be back in action in 2019.
Site created on April 19, 2018
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