The last surprise (2019)

One beautiful summer afternoon when Rosalind was about four, she and I were walking together in Boston holding hands. Wearing a little red sun dress and clear sandals, she was swinging my arm and skipping next to me until we passed through a crowd. She started walking thoughtfully. Then she stopped and stood stock still and shouted out, almost as loud as she could, “I don’t want to die!”

You might think I would know what to say to her, but I didn’t.

“I don’t want to die, Dad.”

Now we were standing at a corner, waiting for a Walk sign.

She was looking up at me. “Will I? Will I die, Dad?”

The light changed. We started across the street.

“Dad?”

“You will die,” I said finally. “I will die. Mom will die. We all will die.” My answer seemed so inadequate as it came out of my mouth. “But there is a lot to enjoy between now and then.”

And that satisfied her.

We don’t know whether we will be alive a year from now, a month from now, or tomorrow. Yet we rarely doubt it. Nothing has happened to challenge our confidence. We have been alive every year since we were born. Why wouldn’t that trend continue? And when we turn to face it, when we start to ask questions or try to answer them, the facts swim or shimmer and we can’t see clearly at all.

For years, I expected to die at thirty-nine because my father had. My birthday falls exactly a week before the anniversary of his death. Throughout my twenties and thirties, my memory of most birthdays is myself immobilized in a chair and staring straight ahead. I must have moved around—went to class, went to work, whatever—but I only remember staring ahead at the gap between our ages. The gap was closing. I would soon be the same age he had been, and I had just wasted another year. Each birthday felt like a head injury, which only grew worse as I grew older.

One of the people who watched this happen was my friend Kurt. We met as freshman in a room full of suitcases and duffel bags and furniture dropped inside the door. I was sitting on the floor, hanging up the phone. We became friends in the time it took me to stand up and shake his hand. Throughout the many years of conversation that followed this instant, he often heard my dread of dying at the same age my father had.

Spring of 2000 was when the gap finally closed. Kurt called my mother. They established that my father had died forty-six days after his thirty-ninth birthday. Then Kurt identified the forty-seventh day after my thirty-ninth birthday, which fell on April 18. That night, I came home from work and found him waiting in my driveway to take me out to dinner.

“I thought about doing this yesterday,” he told me. “It was actually more convenient for both of us.” He had been coordinating with Suzanne. “But you hadn’t outlived him yet.”

It was all so thoughtful, so appropriate, and so ridiculous at the same time.

“A toast,” he said when the beer came. “To outliving your father.”

“By one day,” I said, raising my glass.

“And counting,” he said.

As I rode the train into Boston or drove around Route 128, as I paid for music lessons, saved for retirement, and worried about our credit card balance, my age of death moved from thirty nine to some vague time deep in retirement that included grandchildren. Of course it would happen, but not soon.

My raw, red fear—the conviction that I would die just as he had, that I would impact my wife and my children just as he did—returned when I learned I had leukemia. So how long can I expect to live? If I am going to die soon, I would like to know. When cancer was a death sentence and my father asked this question, no one answered him. When I ask, many people answer. Yet I can’t understand their answers.

It is now early February. My second round of chemo is done, but we don’t yet know whether it worked. The goal is remission, or as my doctors so carefully phrase it, “no leukemia we can find.” They phrase it this way because my mutations can survive multiple rounds of chemo, hiding in the nooks and crannies of my bone marrow. I will need a stem cell transplant—in which my immune system is removed and replaced with someone else’s. The transplant will likely happen in March or April. But in order for the transplant to work, I still have to reach that point of “no leukemia we can find.”

“What I want to know—” I tell Dr. Dreier. “What I really want to know are my chances for survival.”

She looks at me with sadness and concern. “You mean the five-year survival rates? Is that what you are asking about?”

“Yes. I guess so.”

She feels the weight of this question and imagines a better world—a world where she had the data to support a clear, complete answer. “Five-year survival rates show overall trends for a population, but they don’t answer that question for you as an individual. Does that make sense?”

“It does,” I say. “But it doesn’t help much.”

“Those numbers include all comers for one thing—people who are relatively young, like you are, as well as people in their eighties and nineties who have many other health problems. Even when we can break out the numbers by age, outcomes vary substantially by individual. Also the five-year rates don’t account for different treatment protocols. And they don’t reflect the advances we have made. We cure people now we couldn’t five years ago.”

I have heard this before. It is hard to accept. “So the answer is that there is no answer?”

Dr. Dreier knows how to be silent and when to sit still. She just watches and listens.

“I have this disease,” I continue, “which has killed many people before me, yet there is no reliable information about whether it will kill me?”

“I am sorry.” And she is. “That’s just where the research stands at the moment.”

“So what is my level of risk? Can you give me a sense of that?”

“We have been over all this before,” she says peacefully. She shows no impatience or frustration. “But it doesn’t always make sense the first time.”

I am not in the highest category of risk, and I am not in the lowest. I am not in the highest because I don’t have significant abnormalities in my chromosomes and I don’t have the most aggressive mutations. I am not in the lowest because the mutations I have don’t respond easily to treatment, which is why I need a stem cell transplant. Now my cancer hides from my immune system. After a transplant, the new immune system will recognize my cancer as foreign and attack it. Unfortunately, the transplanted immune system might also recognize my organs as foreign and attack them. This is called graft-versus-host disease, and a new immune system might injure not only my skin but also my eyes, my gastrointestinal tract, my liver, and even my lungs. One of the most critical risk factors in this process is the donor and how closely the donated stem cells match mine.

“The closer the match,” Dr. Dreier says, “the less likelihood of graft-versus-host disease. A sibling match is the best, so we will want to start there. You have two sisters, right? Has anyone talked to you about reaching out to them?”

“Both Emily and Mandy got a kit in the mail, did a cheek swab, and sent it back. We’re just waiting on the analysis.”

Just inside my door is a set of colored buttons.

At some point every day the door cracks opens and a hand comes in at the wrist. Fingers feel for the purple button and then press it. Then the hand slips out and the crack closes, and I know that the medical team has gathered in the hall and that I am next on rounds.

One morning when this happens, I am staring at a statistic. I have seen this statistic several times before, but today it jolts me all over again.

Then the door swings open all the way, and the doctors file into my room. The attending physician stops beside an empty chair, one hand resting on the back of it. The other doctors stand around her. Her name is Dr. Joshi. I have never met her before. She asks me, as attendings always do on rounds, what questions I have.

“Is it true,” I ask, “that my overall chance of survival is only twenty-seven percent?”

This question takes her by surprise. She is silent for a moment, her open hand now gripping the back of the chair.

I ask the question again.

Finally, she blinks and adjusts her glasses between two pinched fingers. “A number of factors contribute to the survival rate.” She speaks in short bursts. “Age. There is age.” She holds up one finger. “Overall organ health.” She holds up a second finger. “Comorbidities—other diseases.” She holds up a third finger. Then she pauses. “An additional risk is refractory AML,” she says finally. No fingers for this one.

“What do you mean?” I ask. “Do you mean how I am repeating induction now and we don’t know whether it will work?”

“Whenever a patient hasn’t completed induction and hasn’t gone into remission, there is the risk that their leukemia is refractory.” She sees the stethoscope hanging on my IV pole and takes it down. “There are also risks during transplant.” She seems to wish she could stop talking and start examining me. “Such as the risk of the ablative chemo that we give you.”

“That’s a slight risk, isn’t it, at my age?”

“One of the chemo agents could cause an unpredictable injury to the lungs or the liver. But the majority of risk is infection. Viral, fungal, as well as bacterial infection. Because during that time a transplant patient doesn’t have a functioning immune system.” She still holds the stethoscope in her hands. “After transplant, we worry about graft-versus-host disease. That is where T-cells present in the graft mount an immune response to tissues in the host. A lot of this depends on the match between the donor and the host. The better the match, the less risk of graft-versus-host disease.”

“This is all helpful information,” I say, “but I don’t see how it answers my question.”

She opens and closes the ear pieces as if about to put the stethoscope on her head.

I continue. “You are giving me a lot of detail but not actually answering my question. Do I have only a twenty-seven percent chance of surviving the next five years?”

She glances up from the stethoscope. There is a panicked look in her eye. “Other doctors can help you with this better than I can. I’ll ask someone else to come talk to you.” She raises the stethoscope and holds it open outside both ears. “Okay if I examine you now?”

Later that day Dr. Duggan, the doctor who first told me that I might need a second induction, bursts into my room with two residents. She walks like a pirate, her white coat billowing behind her. I am standing beside my bed, holding my IV pole. She plants herself in front of me, hands on her hips and feet spread wide, as if these were our last words before we crossed swords.

“Mr. Smith? Do you mind if I show these doctors your posterior iliac crest?” That’s the bone above my hip where she did my biopsy two weeks before. “We were just talking about posterior iliac crests on men with long torsos. And I said to them, ‘Mr. Smith is a man with a long torso. Let’s go look at his posterior iliac crest.’”

I notice, not for the first time, how much the younger doctors appreciate her swashbuckling style and how much effort she invests in them. Even though we have argued with each other in the past, she knows—just knows—that this won’t upset me. I turn around. She raises my gown and delivers a little lecture on locating the correct spot for a biopsy on the posterior iliac crest when a man has a long torso. Then she drops my gown like a curtain, pats me on the shoulder, and starts striding out of my room.

But I stop her. “Do you have a minute?”

The younger doctors continue walking. Dr. Duggan closes the door and comes back.

“So I asked Dr. Joshi during rounds whether my overall chance of survival is really only twenty-seven percent. She had a hard time with the question.”

“Yes, I heard about that. Dr. Dreier is coming to talk to you about your question, although she told me she has talked to you about this already.”

“I was asking about a percentage, but I can’t decide whether I actually need a number. Here is a better way to explain what I need. I picture you and your colleagues sitting around a table talking about me. Right? When you talk about me, there are things you say that you wouldn’t say to me—because you are in there together with the door closed and you don’t have to worry about my emotion. There are also assumptions that you share based on your education and your experience of other patients. And there is a kind of deep knowledge about what my chances are and how my chances change as we move through the process. Do you see what I mean?”

“I see where you’re going.”

“This is what I need. I need a view into that room.”

“I would need the same thing if I were in your shoes. Exactly the same thing. But here’s the problem. You won’t get it. You are looking for a big answer. A plan. See? I know you already. I understand that about you. But even if I could bring you to those meetings—even if I could give you that view into the room, you wouldn’t get it. Why? All you would hear is a lot of detail. What we know about your mutations. Which treatments each mutation responds to. The evidence to support each treatment option. Drug interactions. The health of your organs. And so on.”

“That’s probably true,” I say. “I can picture that.”

“But here’s the real problem with percentages or any kind of long-term plan. We have no idea what the next few months will look like and how you as an individual will do. The challenge is that we don’t have all the information all at once. It isn’t like a jigsaw puzzle where we have all the pieces from the start. Right? We can’t just dump out the box and know we have everything we need. I can see you don’t like this answer.”

“No. I don’t. But I understand it.”

“You think too highly of us. Often we don’t know a lot more than what happened in the past and what is happening right now.”

Health gave me a confidence that cancer took away. And what I miss—what I strive to replace—is the illusion of certainty. I used to have a long view. I would die at thirty nine. I would live deep into retirement and know my grandchildren. I want a long view now, even if the long view is information I don’t want to hear. Yet all I see is the next course of treatment and maybe the one after that.

My sister Mandy is a match. A perfect match.

“You know what, Dad?” Rosalind says to me. “Don’t get mad when I tell you this.”

“Okay.”

“You and Aunt Mandy are kind of low-key control freaks. Right?”

“We are. It’s true.”

“So it is great that she’s a perfect match. Because it helps you both feel in control.”