How will I say goodbye? (2018)
“Chemotherapy will start as soon as it safe to do so.”
It is rounds again. Monday. New Year’s Day. Dr. Dolan is talking again. Three other doctors stand around him—his attending, an intern, and a resident. Suzanne listens.
“The chemotherapy we give for AML is very standard. It is an intravenous combination of two medicines that will go in over a week. Your blood counts will drop. And you will need blood support. Platelets. Red blood cell transfusions. Because your white blood cells will be low, you will also be susceptible to infections. The vast majority of the time we are able to prevent infections or catch them early. And in general people do okay—” He pauses, as he did on Saturday, to limit his promise. “—with this chemotherapy.” No promises about what happens next. “Because of how intensive the chemo is and how your blood counts go down and take a while to come back, expect to be in the hospital for a month.”
“Okay,” I say. “I understand.”
“We thought we could start chemo today. Today was our target. But the concern is your fevers. We still don’t know what is causing your fevers.”
“But my fevers could just be caused by the leukemia. Right?” My voice is no stronger than it was on Saturday. “And that won’t change until the chemo starts.”
“The last thing we want to do is give you chemo and make your immune system even weaker and then discover infections we didn’t know about. So we have to be sure we understand what infections you have, if any, before the chemo starts.”
“Okay,” I say. “I understand.”
Suzanne is silent.
“The target now is tomorrow. We are hoping for tomorrow.”
Dr. Dolan performs an examination—the same examination that the intern and the nurse each performed already this morning. Then I shake hands with everyone and they leave.
I usually have my laptop open to a list of questions during these conversations. I take notes. Sometimes I record. But I never know what to say after they leave. Suzanne looks at me. I shrug. It is hard for her to probe. She can’t ask a question like “What’s wrong?” or “Are you worried?” So she lets my shrug stand, and we are quiet for a moment.
Then I change the subject. “Have you thought about Caleb’s birthday?” It is next Saturday, a little less than two weeks away.
Now she shrugs, spreading her hands.
“We should do something. He should get a party.” Suzanne has five sisters and four of them live within a few miles of us. Both of my sisters live around Boston. With children and husbands and a few friends, a birthday party is about twenty people. But it’s just a meal. No one expects very much. “You can order pizza. Isabelle’s home and she can bake a cake.”
“Everyone will miss you. We’ll want you there.”
“I’ll want to be there.” That I won’t be there makes me angry, briefly. “But he needs some normalcy. You all do.”
Throughout the day Monday, doctors continue to multiply. As the oncology team struggles to figure out what was driving my fevers, they keep adding other specialties. First, Infectious Diseases. A resident examines me, asking extremely specific questions about where I traveled and where I dug in the dirt. An hour later his attending comes, performs the same examination and asks the same questions. Then a resident from Respiratory. Then a resident from Cardiology. Then come their attendings, who repeat each series of questions and each examination.
Increased activity, increased urgency, increasingly intense concern. Am I spinning, faster and faster? Or am I wobbling? I feel like a top. No, I feel like a table full of spinning tops. One top wobbles and bumps into another one, which then wobbles into two or three or four others. And it seems like the doctors are standing around this table, intervening to start each top spinning again.
“You stay very calm,” one of the nurses says as she draws my blood one morning. People who know me best would not describe me as calm, but I do stay calm in a crisis. I ask good questions. I insist that the doctors articulate the options. My focus is not the physiological detail but each decision and the risks—same as I would have done if someone else lay in this bed, one of the children or Suzanne. Most times on most days, it is all just a thing to understand. As it has been since the emergency room, my emotions are a blank wall. Until they aren’t.
Death is the story of cancer in my family, like so many other families, and it is impossible not to tell the same story about myself. I select only the facts that serve the story. I neglect any facts that don't. Show me a graphic like this, and I see a 70% chance of dying.
I don't see the date. I don't see the fine print. Phrases such as “cannot be used to predict what will happen to an individual patient” or “treatment and responses to treatment can vary greatly” do not register. I can tell my mother and my sisters and my wife and my children about my good prognostic features—relatively young, relatively fit, strong organ function, and so on—but it doesn't change my fear. Genetic testing, targeted therapies, those hundreds and hundreds of ongoing clinical trials, and so many drugs approved by the F.D.A. in a single year—none of that touches my fear either.
I don't spend a moment being afraid for myself. I feel afraid for everyone else. I feel guilty. Because I fear the impact. Because I lived the impact. How will I say goodbye? In the years since I said goodbye to my father, his blessing has transformed into a promise that I made him. I made him a promise about children and marriage. My children have so many challenges ahead of them. Can't I help them? Can't I give them the guidance I missed? And I worry about Suzanne. Grief for her will be a quiet tunnel and a room at the end of it, deep underground. There will be a metal door with many locks and a doorbell that is really too quiet to hear.
Chemo doesn't start on Tuesday. On Monday, a chest x-ray showed pneumonia at the bottom of my right lung. By Tuesday, pneumonia has spread to the rest of my right lung and the left lung. My breathing grows worse. To get a sample of what is actually in my lungs, they put me through a bronchoscopy procedure, which turns Tuesday night into the worst night so far. And then on Wednesday morning, rounds again. This time I am alone. Suzanne is working.
Dr. Dolan is talking again. “So we have had a lot of discussions about the best time to start you on chemotherapy. It’s a question of balancing the benefits of chemo with the risks of chemo too. We are confident that we have you on the right antimicrobial agents and yet your lung process continues getting worse. So here are our thoughts. We know that the main underlying problem is what the leukemia is doing to your immune system and that waiting much longer to treat the leukemia—”
“—isn’t going to help me,” I interrupt. “And what did you decide?”
“That it’s time to get things started.”
One morning, a few days after chemo starts, my family leaves our house together to visit me. But only Suzanne comes into my room.
She sits on the edge of the bed. “The kids are down in the cafeteria.” She has color in her face for the first time in days. She is wearing lipstick. “They’ll be here in a few minutes.” Then she takes my hand and smiles. Her big, happy smile. The smile I get and no one else does. The smile facing each other on the same pillow.
“I’ve decided that you aren’t going to leave us,” she says. “I don’t know what’s going to happen, but I know you aren’t going to die.” She looks thoughtful now. “I usually, you know—” She waves her free hand. “—expect the worst. I catastrophize everything.” She shrugs. “But I just believe that you aren’t going to leave us.” And she smiled again.
These kind of moments used to last an entire afternoon—maybe a Saturday afternoon on a warm day in early September, alone with lunch in a grassy glade next to a lake. Now they have a shutter speed. A snap. The click of the mirror. And gone.
The kids burst into the room, laughing and talking, all the three of them together. “Why is it dark in here?” Isabelle asks, turning on the lights. And then she halts. The sole of her shoe slaps on the floor. Her brother and sister halt. They are all in single file, ordered by age, and they all stand now frozen in mid stride. “Is it okay if we come in? Do you want us to come back?”
Suzanne kisses me through her mask and stands up. And for another moment, perhaps longer than any shutter speed, I feel her confidence.
