Still looking for something to do
It’s been six months I posted last. I know this is exactly the opposite of how one is supposed to handle social media, but I haven’t had much to say when I feel well and have grown so bored with writing about my health when I don’t.
After that Memorial Day weekend when we moved a whole tree to stabilize a streambank and I climbed in my mother’s bedroom window because she couldn’t unlock her door, I continued to feel better and grow stronger. Suzanne and I tried to make the best of the summer. We spent a long weekend in Manhattan for our anniversary. We spent a week in Dublin with our children, a week together at the farm, and a week visiting family in Maryland and Virginia. I ate as many strawberries, blueberries, and peaches as I could keep without going bad and we cooked from trays of fresh tomatoes that covered our counters and our dining room table. I finished revising a number of chapters in my book—the book version of this blog—and I had couple of short pieces accepted for publication in literary magazines. The week after Labor Day I returned to work.
Before I returned to work, I had one more T-cell infusion from my sister Mandy, which is one of the few treatments left for my leukemia. I still take one targeted therapy, which the nurses call a “chemo pill,” that targets the mutation that drives the leukemia I have. There are hundreds of possible mutations, however, and only a few targeted therapies, and someday the leukemia will mutate again, and this therapy will no longer work. But it is working now. The rare solid tumors in my abdomen (my extramedullary leukemia) continued shrinking over the summer. I had only one tumor left—the one sitting on my heart.
The best defense against leukemia returning—however it mutates—is my sister’s immune system. The advantage of having someone else’s immune system is that it is more likely to recognize and attack the leukemia. The disadvantage is that it can mistake healthy organ tissue for an intruder and attack that instead. T-cell infusions are designed to make her immune system more aggressive—in order to hunt down the leukemia. But there are only so many I can have before the risks of her immune system attacking my organs becomes too great. The T-cell infusion I had before returning to work was the last one considered worth the risk.
In July, a cousin had called to tell me I needed better woodworking tools. He owns a custom carpentry business, and he sent me a box of his spare tools. The box arrived. I carried it down to my workbench and found no place even to rest the box, let alone store my new tools. During their last two years of high school, each of our children took over my workbench, and their things covered mine in that corner of the basement like archaeological layers—Caleb’s bike parts and bike tools, dried tubes of paint and half-finished canvases from Rosalind, Isabelle’s drawing and writing projects. In fact, I could barely turn around holding the box. Behind and beneath and around my children’s things stood stacks of old doors and sash windows, a pyramid of paint cans, and particle-board shelving collapsing under the weight of junk I didn’t remember putting there—old ceiling fan engines, extra bathroom tile, broken light fixtures, hardened cans of grout and spackle.
I decided to rent a dumpster. Starting in August, I cleaned out the cellar, built new shelving, and installed a pegboard to hang my new tools together with my old ones. Organizing my tools at home made me frustrated about how disorganized the tools were at the farm. Only my mother ever knew where everything was, and she has Alzheimer’s now. I filled her pickup truck twice for the dump and installed pegboards there as well. When I returned to work in September, I was still sorting and categorizing tools in both places, which I found intensely comforting. All the saws will hang here. Hammers there. Pliers and wrenches here. Screwdrivers and chisels there. Each size of screw and nail in a different container, all in neat rows. As I hung everything in its place, I pictured what I might be doing when I needed the tools next and how pleased I would be that everything was so easy to find. This is the organized workbench at the farm.
As I moved through September, I felt increasingly hopeful. I settled back in quickly at work and felt useful there, supporting teams that were conceptualizing different parts of a new, complicated product. Suzanne and I started talking about traveling to Europe. We wanted to see Italy again, and we had friends who now owned a vineyard in the south of France. I started planning for sugaring in February and March. Remembering the supply chain problems from last year, I ordered all the equipment we needed early. Large boxes of tubing stacked up on our porch like hay bales. “Let’s just throw all these boxes in the van,” I said. We still have a minivan. “Because we’re going to the farm on Friday.” Then on Thursday I started struggling to breathe.
Without even being conscious of having a cold, just a little congestion, I had developed bacterial pneumonia. I spent four days in the hospital on IV antibiotics. A week after they released me the pneumonia returned, but this time IV antibiotics had no impact. My breathing got worse and worse. I needed more and more oxygen. I ended up in the ICU. Pneumonia had triggered an over-response from my hyper-aggressive immune system, primed by the T-cell infusion, and it had attacked not only the bacterial infection but my lungs themselves. It was kind of like a police riot. Hunting my lungs for infection, T-cells beat up citizens on the street.
“We don’t usually see patients in the ICU using a laptop,” the attending said one morning as she came into my room. I left the ICU soon after but spent almost the month of October somewhere in Beth Israel, and I continued working. In a hospital gown, draped in tubes and wires, I kept most of my meetings with my camera off as nurses reached in to take my blood pressure or give me shots. Another doctor watched me sign off from a Zoom call and told me a joke. “A manager in France tells his employees, ‘I am going camping for the month of August. If you have any questions, I’ll answer them in September.’ A manager in the States leaves an out-of-office message, ‘I’m having a kidney transplant between one and five on Wednesday, but after that you can reach me on my cell.’” I laughed. Fair point. He thought I needed to rest more, which I did, but working made me feel I had a future, as if by force of will I could preserve the optimism of September. I didn’t explain that to him.
They released me. Four days later, I was back in the ER. This time oxygen alone wasn’t enough. I couldn’t even draw air into my lungs. They took me straight to the ICU. Suzanne went home and the doctors called in the middle of the night to tell her they had to put me on a ventilator, which after Covid felt to her like the crack of doom. When she came in the next morning, I lay spread eagled and tied down to the bed in a medically induced coma with a tube snaking out of my mouth.
My immune system had flared again, a second police riot. I came off the ventilator after a day, but the damage to my lungs was extensive. If I rolled over in bed, I started gasping and nurses came crowding into the room because the level of oxygen saturation in blood plummeted. “Take deep breaths,” they would say, which was like telling someone who just had a spinal cord injury to put one foot in front of the other. Eating breakfast took almost an hour because I felt like I was suffocating each time my mouth was full. If I tried to walk two feet, it felt like someone came up behind me with a garbage bag, threw it over my head, and yanked the string tight around my neck. It was a week before I could walk ten feet to the bathroom, and then I sat gasping and choking and coughing on the toilet for five or ten minutes before it felt like the bag finally came off my head.
My doctors didn’t know whether I would ever get better. One doctor told me I would get worse. “The only thing that would hit me harder than this,” I told Isabelle, “is if they amputated my legs.” Would I ever walk in the woods again? Or walk in and out of a church in Italy? Could I even walk up the stairs to our apartment? I had reconciled myself to living with my head inside a guillotine, waiting for the blade of leukemia to fall, but I expected to continue participating in life. All this struggling and suffocating over the smallest amount of movement—now I couldn’t make use of the time I had left, and I felt crushed, absolutely flattened, in a way I never felt before, after five years fighting this disease.
Having spent most of October in the hospital, I spent November there as well, but this time I was no longer working. I went home on oxygen the night before Thanksgiving. I came up the stairs one step at a time, stopping after each one to catch my breath. Isabelle cooked the turkey. We added a leaf to our dining room table, and I ate “Putin style,” with my family crowded at the other end of the table. In the weeks that followed, I did pulmonary rehab exercises and practiced on the stairs every day. Eventually, I walked to the end of our street and back, about a hundred yards each way. It took half an hour. I worked my way up to a loop through the neighborhood that ran past our house. One lap was all I could do for a week, and then I did two, and then three. I had done four laps the day I thought to measure the loop and realized I could now walk two miles.
A few days before Christmas, Isabelle and I drove out to the farm and unloaded the boxes of sugaring supplies that had been riding in our minivan for three months. We did some work, but I didn’t last long, and we were back in the car a few hours after we arrived. Rosalind and I returned a week later, another day trip, and started laying out tubing on the hill behind the sugarhouse. The week after that, Caleb and spent three days there, stringing lines. I have been using the tractor kind of like a wheelchair to get up the hill on each side of the valley. I sit behind the wheel with an oxygen tank on my back and use a laser pointer to tell the kids what to do. “That’s a maple tree. And that’s a maple tree. Yes, and then run the line on the downhill side of that beech tree. And see the maple tree there?” Eventually, I get off and walk into the woods to help.
My sisters joined us over Martin Luther’s King weekend in January. Here my kids and one of my nieces, tightening a line.
We will be ready to drill holes, collect sap, and make maple syrup in February. And I might feel ready to return to work then.
The day after coming home from that weekend at the farm with my sisters, I rushed back to the hospital with a blood clot in my lungs. I wasn’t in the hospital long—three days. No one knew why the clot formed. While I was in the hospital, a CT scan showed that the tumor on my heart has finally disappeared.
“Am I in remission?” I asked.
“I don’t like to use that word,” my primary oncologist said, “with people in your position.”
“Because it gives false hope?”
“Yes,” she said.
“Am I as close to remission as I am ever going to get?”
“Yes,” she said.
We won’t know how much better my lungs will get until they stop getting better. When the leukemia does return, there aren’t many treatments left that will work—or that I can tolerate. But I am starting to realize that the end might not be so clean and simple as a blade falling. My body is becoming progressively more unpredictable. When anything happens with me now, my oncologist almost always says, “This is unusual.” It is rare for a transplanted immune system to attack the lungs without first attacking other organs, such as skin or intestines. Even now no one understands why my blood counts stayed so low for so long last winter. The extra medullary tumors themselves—leukemia outside the blood stream—completely surprised my medical team. But if I really did face a guillotine—if I had a burlap sack over my head rather than a plastic bag and someone started walking me up the steps of the scaffold, I would still be looking for something to do.
