Uncertainty
Chemo ran five days the week of December 13. “The hope is that your tumors will disappear,” my oncologist said when it began. My tumors didn’t disappear. They stopped growing, which is good, but they didn’t shrink much. Reading the radiology report after my CT scan, I understood for the first time that the largest tumor wasn’t simply behind my heart but wrapped around the major veins and arteries: “The infiltrative mass encases the left brachiocephalic vein, surrounds the ascending aorta and aortic arch, as well as the main pulmonary artery.” The other tumors in my abdomen were all still there: bladder, pancreas, bowels. I stopped reading the report and did not try to understand how each of these were positioned.
Beth Israel is short staffed because of the recent Covid surge, and I see a new oncologist almost every day. The other day one of them told me, “You never want to be interesting to your doctors. And I’m sorry to say that you are very interesting to your doctors.” Leukemia is supposed to appear in the bone marrow. The lab had just finished a detailed genetic analysis of my bone marrow and found no trace of leukemia. They did find it, however, in the solid tumors. What they identified in the tumors was the same cocktail of mutations that had been in my bone marrow the last time. A study has reported this phenomenon—leukemia coming back as solid tumors—in less than 1% of patients who have had, as I have, a stem cell transplant. Because it is so rare, there is little information about what factors indicate a good prognosis. “You are living,” another oncologist told me, “in a data-free zone.”
I hear no good news without bad news right now. Nothing is a relief for long. They have a targeted therapy for one of my mutations. Approved by the FDA since the last time I was sick, this drug disrupts the way the cancerous cells replicate and causes them to die. But it only works for 40% of the people who take it. I started taking it a week ago, and it will be a few weeks before we know whether it will work for me.
The uncertainty is hard. Harder still is my lack of confidence. Leukemia came back, and in this rare, mysterious way that no one expected. How likely is a good outcome—really? At best my mood is a kind of white-knuckled optimism, where I hope for good outcomes but think incessantly about all the reasons why each treatment won’t work.
Despite the uncertainty, each day in the hospital is exactly the same. I wake up. I take pills. I ask nurses how much longer I have to be on the IV pole. I read and write and walk in the hallway and do everything possible to avoid ordering meals from Food Service. Covid restrictions mean one visitor a day so my family is in rotation: Each family member every fourth day, and I see all of them together on Zoom or FaceTime. When I join dinner by video, someone often pulls the dog into their lap. She doesn’t recognize my image or respond to my voice, which makes me feel like a ghost.
The daily calendar in my room ran a few extra days into January—reflecting an institutional margin of error for a new year—but it has been blank since the fourth. I have been here thirty-one days. My blood counts have started to come back up so I will probably go home next week. I will deal with the uncertainty better there, while sitting on furniture I remember buying, cooking meals in the kitchen that Suzanne and I remodeled, and wishing the dog didn’t need to be walked so often.
