Keeping my streak

My leukemia has been kept under control largely in two ways. First through a targeted therapy: Acute Myeloid Leukemia has hundreds of different mutations, and drug companies have recently developed treatments that target the most common of these. The drug I have been taking has worked very well. But leukemia is always changing in the background, and the most effective treatment regimen includes not only a targeted therapy but also a general agent that kills any kind of leukemia. For several years, that general agent has been my sister’s immune system.

Last fall, pneumonia triggered an over-response from my immune system, and T-cells started attacking my lung tissue instead of just the bacteria in my lungs. My medical team tried to restrain my immune system with a smaller amount of steroids, but that wasn’t enough. So they had to give me the largest dose of steroids someone my size could tolerate. They had no choice. The immune system was going to destroy my lungs and kill me. But in doing so, they put that general agent in handcuffs.

Suzanne and I had planned a two-week trip to Europe, in late September and early October—a week in Provence and ten days in Florence. Neither of us had been to Provence. Suzanne had never been to Florence. I was looking forward to seeing the Duomo with her, and Michelangelo’s Slaves, and the paintings in the Uffizi, as well as Fiesole and Sienna and the countryside in Tuscany. In June she started relearning French, and I started learning Italian using Duolingo.

The last weekend in July, we were getting ready to spend a week at the farm when my breathing suddenly got worse. I had not been using oxygen at all except to exercise, but that Friday night I had to wear oxygen in order to talk. By Saturday it was bad enough that I went to the Emergency Room. I had some kind of pneumonia, and in the course of treating that a CT scan revealed extra-medullary tumors in my abdomen, with one wrapped around my kidney like a hose clamp. A biopsy revealed leukemia in my bone marrow.

I have just completed seven days of radiation and a course of chemotherapy. The chemo is a cocktail that put me in remission in 2019. We tried to use it in 2021 but it caused my blood counts to crash in a way that kept me in the hospital for three months. So the first question is whether I will tolerate the chemo. The second is whether it will work. It will be weeks before we know the answer to either question. We will also be looking at clinical trials, but I now have other health problems, side effects of earlier treatments, that may make it hard for me qualify. Shackled on the sidelines will be my sister’s immune system—the warrior that has done the most to fight leukemia.

It is hard to describe how I feel. I am not even sure I know how I feel. When I first had the transplant, in 2018, I had a fifty-percent chance of living five years. After I relapsed later that year, I had a thirty percent chance of long-term survival. Almost two. years ago, when the leukemia came back outside my bone marrow, my oncologist put my chances at ten percent. I have had so many Indiana Jones–type escapes. There has to be a last time, and my family and I are all wondering, Is this it?

I have felt intensely jealous recently when I see photographs of people traveling in Europe, particularly couples. The day she confirmed that leukemia had returned, my oncologist said, “You have to cancel that trip.” I canceled the flights and the rental cars. I canceled the Airbnb reservations for an apartment on the seashore in Marseille and another near the Rhone in Arles and a third with a garden and a roof-top terrace a short walk from the Ponte Vecchio in Florence.

I had a 50-day streak on Duolingo when I canceled the trip. A notification came in later that day: “Make it a 51-day streak with a quick lesson now.” “What's the point?” I thought, and then decided, “You know what? I’m still going to expect this.” I learned my day’s worth of Italian and kept my streak.

Since then, I’ve been falling asleep planning different itineraries through Italy. Each itinerary takes at least a month. Last night we started in Bologna and then drove to Florence, where we stayed in that apartment near the Ponte Vecchio. Then we wound our way through Tuscany and to Rome. We spent five days driving down to Calabria, where Suzanne’s family is from, and finished our trip in Sicily.