Sledding accidents, summer fruit, and swimming
I have appreciated Thanksgiving and Christmas more recently, primarily because our kids come home from college, but the weeks between these holidays still feel foreboding. This was when I first fell sick with leukemia.
Not much happened between Thanksgiving and Christmas last year—only a sledding accident. The accident involved poor judgment and a high jump at the bottom of a steep hill near our house. I brought a shovel, in addition to the sleds. After the kids had gone over the jump and packed it down while I made it higher, I pulled a sled to the top of the hill myself. “I survived leukemia,” I thought. “Why not?” A few minutes later, as I lay on the other side of the jump unable to sit up, I listened to my kids running toward me and thought, “Did I survive leukemia only to break my neck?” Nothing was broken, but I had to hobble back through the woods, using the shovel as crutch. Once I crawled up the stairs into our apartment, quite a few days passed before I could walk down them again.
In the three years since I went into remission it has been hard to tell that leukemia happened to me, except there is an intensity about how much I enjoy certain experiences. Even when I don’t enjoy them responsibly. This is particularly true of the seasons. I felt ecstatic about this past summer—events like eating fresh strawberries or planting a peach tree or picking cherry tomatoes off the vine in the August sun. My twenty-pound dog tries to save me from drowning every time I go swimming, and one hot evening I held her on my lap in the shallows of a river after she had exhausted herself circling around me.
Now it is December again. Two Sundays ago, I sat in the sun on the porch at the farm with a computer in my lap, shopping for maple sugaring equipment. We had thrown out half our old tubing when we finished sugaring the last time, planning to replace it after Christmas this year, but now all the tubing I needed was out of stock. I felt intensely frustrated—supply chain problems ruin everything!—and then a moment later kind of pleased. I liked having a problem to solve. How many taps did we really need to run the evaporator? Could I find enough online? How much driving would I need to do? Another seasonal experience to appreciate.
The longer something doesn’t happen, the more confident you become that it won’t. You adjust to beams falling. Then you adjust to them not falling. But the day before had challenged my confidence. Walking in the woods, I had to stop every three or four steps to catch my breath. Now I was shopping for sugaring supplies because I didn’t have the energy to leave the porch. Plus it was one of the weeks between Thanksgiving and Christmas.
“It isn’t just a cold,” I told Suzanne when I got home. “Something is wrong.”
By that Thursday I was back in the hospital for the first time in two and a half years. A chest CT showed a large mass behind my heart. The sack that holds my heart was full of fluid, and there was secondary fluid in my lungs. Friday I had a three hour surgery to biopsy the mass and drain the fluid. The pathology report came back in a partial, pixelated way over the weekend, like an image loading over a bad connection. Additional CT scans showed more tumors in my abdomen.
At 6:30 Monday morning, my primary oncologist appeared in the chair beside my bed. She wasn’t supposed to be on duty. The masses were my leukemia returning. It is rare for leukemia to return as solid tumors rather than blood cancer—and one of the features of this kind of relapse is that blood counts continue to look normal, which makes it hard to detect. The way she explained it, the transplant is most likely doing the work of producing blood cells that fight the leukemia, but sometimes the leukemia finds places in my body that the immune system doesn’t reach as effectively. The treatment options are the same, whether it is blood cancer or solid tumors. There are new treatments available, which weren’t available when I was sick before, but we will start with an old-fashioned chemo regimen to carpet bomb the tumors. Once the tumors start to shrink, she will explore immunotherapy and targeted therapies that might do a better job tracking down the leukemia left in my body. Surgery won’t help, because the disease is systemic.
We were silent for a moment. The room was still dark. “How high risk is this?” I finally asked.
“Very high risk,” she answered immediately.
I started to cry.
She rethought her answer, seeking a better balance between hard truth and hope. “Any time leukemia comes back it is very high risk,” she said quietly. “But you have been in this place before, Doug, and you have always done very well.”
I will be in the hospital for at least a month, probably longer. This first round of carpet-bombing will take a week, and then the medical team will keep me here under close observation while my immune system crashes and recovers. As it recovers, they will start checking to see how much the tumors have shrunk. If they haven’t shrunk enough, the team will start the chemo and the recovery process again.
I want to stay strong, or at least appear strong, but it is so hard not to ask, What’s the best I can hope for? This disease seems so relentless, so resourceful now. I feel more afraid than I did the last time. I wonder how to handle the fear. The only model that comes to mind is continuing to engage in the transitory moments that make up the experience of being alive—like sledding accidents or summer fruit or swimming in a river with my dog. I won’t have too many experiences like this anytime soon, but maybe the best I can hope for is to return to more of them for at least a certain amount of time, which is honestly all I ever had to hope for.
