My stiff neck
Waiting to go home after five weeks in the hospital, I kept getting a stiff neck—stabbing, twisting muscle spasms.
“How often do you have a stiff neck?” the attending asked during rounds.
“Never,” I answered. “I never have it except when I am lying in a bed at Beth Israel, waiting for my blood counts to come up so I can go home.”
Everyone standing around my bed laughed. They all knew how often I’ve been in this situation.
“So you think it’s stress?” he asked.
“Frustration,” I corrected him. I didn’t think it was stress. “The stiff neck stops as soon as you discharge me.”
But the stiff neck came home with me a few days later, accompanied by a splitting headache.
In the hospital, I feel swarmed by medical professionals. Every few hours, someone measures my blood pressure, my oxygen saturation, my temperature. They draw my blood and analyze the chemistry. They monitor my heart from the nurses’ station and wheel me to X-rays, CT scans, and MRIs. When I’m there, my illness does not feel like mine. It feels like theirs.
Leukemia weighs on me differently at home, where the only medical device is the thermometer on the window ledge in our bathroom and the only medical interventions are a Ziplock bag of pill bottles on the kitchen counter. Being at home also highlights how weak I have become. Unloading the dishwasher feels like exercise. Carrying the laundry from the dryer in the cellar leaves me gasping for breath at the top of the stairs. All of which makes me feel more vulnerable and more worried.
I came home on a Saturday. The following Wednesday, Suzanne and I went to Dana Farber for a second opinion. We saw two doctors: an oncologist I have known for several years and a specialist in bone marrow transplants. We had questions about treatment protocols but the big question was whether it made sense to reinforce the graft I got from my sister or give me another transplant from another donor.
We saw the oncologist first. She told us that in the last few months Dana Farber has had three cases of leukemia coming back as solid tumors. These are people with the same profile as mine: a transplant, a relapse, and a new treatment that put them into remission two or three years ago. I found it reassuring. More doctors focused on more patients means more information, even if it is only clinical information as opposed to the data from large-scale trials. She also thought the benefits of a new transplant did not outweigh the risks, which was a relief because contemplating another transplant had felt a little like Frodo considering another journey to Mordor.
Her desk faced the wall. Suzanne and I sat next to her, in chairs along the wall. “But you should understand—” She leaned toward me, as if about to touch my knee. “I’m going to tell you this straight out because I know that’s what you want me to do. You should understand that your leukemia has come back multiple times by now and that once leukemia has come back like this, it is hard to stop. We will do our best. We are all committed to doing everything we can for you and your family, but it is going to be very hard to cure.”
Suzanne listened in silence. She walked in silence back to the waiting room. Our appointment with the bone marrow transplant specialist wasn’t for an hour. Still thinking about Covid, she picked the two most isolated empty chairs. Then we did what we always do in a crowded place, which is watch everyone else.
I slipped down in my chair and leaned my head against her shoulder. I am bald now from chemo. Maybe five minutes passed. Maybe ten. “We need to be realistic,” I said. “We need to be prepared for what happens if they can’t cure me.”
I felt her shift around. “What do you mean?”
“I need to find a lawyer to review my will. And someone needs to review our retirement planning.” I sat up to look at her face. “You’re upset.”
“Yes, I’m upset. But keep going. Say what you’re going to say.”
“We need to plan for three scenarios. One, we retire together. Two, I die before you retire. And three, I get too sick to return to work.”
She fell silent again. We sat and watched the crowded waiting room. Technicians came out of a side door and walked between the chairs, calling for the next patient like bell hops in old fashioned hotel. “Harold P.? Harold P.?”
When I am at Beth Israel, the lack of efficiency frustrates me. Someone shows up to tell me a procedure will take place in an hour, but it doesn’t happen until the next day. Dana Farber, which was founded by a woman who first had a successful career in business, achieves a kind of corporate precision. When you check in, they give you a radio device to wear so they can find you in the building at any time. The staff handle patients in exactly the same way, as if they all went to the oncology equivalent of McDonald’s Hamburger University. I picture management consultants studying the workflow with stop watches and then diagramming it on a whiteboard. Which is probably what I would do if someone put me in charge of a hospital, but it irritates me intensely nevertheless.
“Mark K.? Mark K.?”
We were on the leukemia floor and the patients were mostly men.
“Thomas S.? Thomas S.?”
Women were there for the same reason Suzanne was—to hear what the doctor said for themselves.
She wasn’t speaking. “We never talked about wills and that kind of thing the last time you were sick,” she finally said.
“I know. I’m sorry. I shouldn’t have brought it up.”
“I’m not saying we shouldn’t be talking about it. We need to talk about it.”
“I didn’t talk about it the last time,” I said, “because I did enough reading to understand the course of the disease, and I knew we had time. Now that leukemia has come back like this, I don’t know how much time we have.”
The doctors at Dana Farber talked to my doctors. They came up with a plan that involved me going back into Beth Israel, a little more than a week after I got out. Treatment was supposed to start on a Monday night but it didn’t start until Tuesday because they couldn’t schedule a procedure.
“I just want to see results.” That’s what I kept saying to the doctors. “I just want to see evidence that something is working.”
The new treatment started and ended. I did my additional time in hospital prison and came home, but there is no evidence yet that anything has worked, and I am having trouble sleeping. Every time I fall asleep I have these Sisyphean dreams where I struggle to solve problems that never get solved. The dreams are repetitive, almost feverish, except I don’t have a fever. And I wake up with a stiff neck.
