If I only knew what to expect. (2018)

Chemotherapy has an immediate impact. It starts Wednesday evening, and my fever breaks on Thursday. For the first time in two weeks, I am not shivering or sweating. And I finally sleep well. By Saturday, I feel stronger and a little more clear headed. I get out bed and sit in a chair. I don’t exactly have an appetite, but I can make myself eat, which is good because I have lost over twenty pounds.

This is what I understand. I have Acute Myeloid Leukemia, and my treatment will proceed in three phases. First phase is induction. Induction is a week of chemotherapy, followed by three weeks of monitoring as my blood counts recover and I regain the ability to fight infection. I get a bone marrow biopsy at the end, and if they find no leukemia I move to the next phase, which is consolidation. Consolidation is treatment to prevent leukemia from ever returning. It consists either of more chemo or a stem cell transplant. Then comes surveillance—the watchful waiting in case it tries to return.

But I don’t know what to expect. I don’t understand my risks. Why does one patient make it through all three of these phases, and someone else doesn’t? I have a booklet. There is one page I read and reread and comprehend not at all. It contains a table entitled, “Chromosome and Gene Abnormalities That Affect Response to AML Treatment.”

When I look at the column Molecular Abnormalities, my risk clearly increases with a FLT3 mutation. I don’t know whether I have a FLT3 mutation. But I had a biopsy when I first arrived in the hospital, and they sent out samples of my bone marrow for genetic testing over New Year’s weekend.

And now it is Monday. I have set up a conference call. My laptop is open at the foot of my bed, and Suzanne has pulled a chair up next to it. Two other people are joining the call. One is my cousin Joe Smith. He is the son of my father’s brother Joe. The other is Nick Schwartz, the son of my father’s friend Marc. They are both doctors, as their fathers were.

Joe joins the call first. “Are they there yet?” We are waiting for the team of oncologists to arrive on rounds. “Oh, good. I thought I’d missed them.” Joe asks my temperature, as well as my blood pressure, my blood counts, and the results from various CT scans.

He and his older brother live in Virginia. They have both booked flights to Boston. His brother is landing Friday night. “Then he’s flying home Sunday afternoon,” Joe says, “and I’m arriving Sunday evening. That way we don’t have to speak to each other. I’m just joking, Suzanne!” he calls out, as if she were in a different room. “I don’t have to see Suzanne to know she is making a face.”

The three of us grew up almost like brothers.

“I am making a face,” Suzanne says.

“I’m kidding. It’s just our different schedules.”

Nick joins. He asks my temperature, as well as my blood pressure, my blood counts, and the results from my CT scans. We talk about his father, who is still alive. Nick updated him last night. Marc sends his best.

I ask them what questions we want answered today. It’s the kind of question a manager would ask, planning an agenda. And at this moment I sound like I’m at work. Except for the freight of emotion a fraction of an inch behind this façade.

“We should start with you, Doug,” Nick says. “What do you want to know?”

“I want to know my risks.” This comes out loudly. “That’s what I want to know.”

Nick starts to speak as Joe clears his throat and speaks over him. “You should hear this from me, Doug.”

Nick defers to him.

“Now I know you aren’t going to like this,” Joe continues. “So don’t bite my head off. But your doctors will have a hard time answering questions about risk at this stage.”

“Yes. I agree,” Nick says. “I doubt at this stage they have the information to—”

“I can’t lie here any longer, Joe,” I snap, “not knowing what to expect!”

Joe is silent.

I remain mad for a moment. “I can’t do it. I need more information.” The moment passes. I sigh. “But I understand what you both are saying. And Suzanne is giving me a look.”

“They’re only trying to help,” she says. “And they know more than we do.”

Joe is quick to break the tension. “But less than we should know.”

And Nick agrees. “That is certainly true.”

“What I don’t understand—” My voice chokes up. “What I want to understand—” I suddenly start to cry. “Sorry. This keeps happening to me. I keep crying unpredictably.”

Everyone is silent for a moment.

I finally get it out. “I have no idea what the relationship between the phases is.”

“What do you mean, Doug?” Joe asks.

“I have to get through them all in order to get better, right? But what happens if one phase doesn’t work? What happens if I still have leukemia at the end of induction?”

“No clue.” Joe is an anesthesiologist. “I have absolutely no clue.”

“Yeah, I don’t know either.” Nick is an emergency room doctor.

The attending physician arrives alone. No interns or residents or nurses. She stands stiffly at the foot of my bed and holds her hands down as if to keep them from fluttering. Her name is Dr. Marques. She is a small person with straight black hair tied in a ponytail.

“I have started induction,” I say. “Right?”

She nods.

“What are the risks that it won’t work?”

“Well, I mean, there is quite a wide range of variability among individuals.” She releases her left hand, which flutters up for a moment. “But in terms of whether induction sometimes fails, the answer is yes.” She has caught her hand and brought it back down to her waist. “It does so happen that induction can fail.”

“In what percentage of cases?” Nick asks.

Bending at the waist, she leans down toward the laptop. “About fifteen to twenty percent.”

“And then what do you do?” Suzanne asks on the other side of the laptop.

“It’s really quite simple. We just do it again. He gets a second induction.”

“And I stay here for another month? I don’t go home for two months?”

“Yes. I mean, I can’t tell you precisely how long. But something like an extra month.”

I sigh. “So a worst case possibility is that I get to the end of induction and you restart the chemo and just kind of say, ‘Well, it didn’t work the first time. Hopefully it’ll work the second time.’”

“Yes, though to be clear,” Dr. Marques says, “that isn’t the worst case.”

I contemplate that.

“But it certainly is a possibility,” she continues.

“What happens if that doesn’t work?” I ask.

“The second induction? Then your risks go up. Substantially.”

We all contemplate that.

“But these are details that you should discuss,” she continues, “with your lead doctor. Have you been assigned a lead doctor yet?”

“Not that I know of.”

“One more question,” Joe says, “if that’s okay. What drives these risks? What determines whether Doug responds to treatment during the induction phase?”

She bows down toward the laptop again. “His mutations.” She straightens up, looking at me. “The precise type of mutations you have will tell us your level of risk. A FLT3 mutation, for example, would indicate an elevated level of risk.”

“Are mutations the same thing as molecular abnormalities?” I ask. “Like this chart? And I show her the chart that I keep reading and rereading and not comprehending.

“Yes.” She peers forward to look at the booklet in my hand. “It’s a little out of date, but yes. That’s the basic idea.”

“So we’ll know more about how I will respond to treatment when we know my mutations?”

“Yes. Correct. We won’t know everything.” Her hand flutters up again. “But we will know more.”

“When will we have those results?” Nick asks.

She bows to the laptop again. “Hopefully tomorrow. Monday at the latest.” She straightens up. “It was a holiday weekend when we sent out the sample. That’s what delayed it.”

I find it hard to wait. One day to Saturday or three days to Monday is nothing like the uncertainty cancer patients once endured. But I will still be sorted, and I will be sorted into one of two groups: People who continue to live, and people who do not.

“Any progress?” I ask on Saturday morning. “Do we know my mutations yet?”

“Not yet. No results yet.” It’s different doctor. Dr. Marques has an emergency. “Actually, I take that back.” He is a resident. “Well, maybe I take that back. Give me a second.” He logs onto the computer in my room. “Yes, we do have the cytogenetic results.” He is talking with his back to me, still looking at the screen. “Which is information about your chromosomes.” Now he turns around. “You have no chromosomal abnormalities.”

“I guess that’s good.” I sound grim.

“Yes, well, it’s neither good nor bad really. I mean, it’s good not to have any complicated abnormalities. Very good, actually. That would be bad. But knowing you don’t have them doesn’t tell us a lot more about your prognosis.”

“What I want to know right now—” My voice cracks and trembles. “—is my level of risk.” Suzanne isn’t there. I don’t have Joe or Nick on the phone.

“That rests on the mutations. Which we are still waiting on.”

“How much longer will we have to wait?”

“Monday is what I’m hearing.” He pauses. “You don’t look happy about that.”

“I am not.”

“I know it’s hard to wait.” He starts looking for the stethoscope to start examining me. “It’s just quite difficult to predict when these tests will come back.”

“I guess that’s what I don’t understand. Why is it a mystery?” I push myself up in bed. He stands now fiddling with the stethoscope and not looking at me any longer. “I mean, how many of these do you do in a week?” I wait for him to answer the question. He doesn’t. I continue. “Quite a few, I’d imagine. It seems it should be more predictable by now.”

“Let me see if they’ve assigned your lead doctor. I’ll let you know later today.”

I never see him again.

The medical team rotates every week. The person helping me understand my life-threatening illness changes each Monday. There are reasons. It’s a demanding rotation, and they need time to rest. These doctors also have a full load in the out-patient clinic and they need time for appointments there. And they certainly do their clinical homework. They know my case when they enter my room on Monday. They just don’t know me. And I don’t know them. “It does strike me,” Nick observes at one point, “how different each of your doctors are in terms of how they communicate with you.”

“Any word on my mutations?” I ask on Monday.

“Pardon?” This is my new doctor for the week, Dr. Foley. “What did you say?”

“Are we still waiting on the results of the genetic testing?”

“Yes.” He is a large man. A man of few words. “We are still waiting.”

“But they told me today!” I am not quite yelling. “Monday at the latest!”

He blinks at my intensity. “We actually heard from the lab this morning about your flow cytometry. It will be about—” He looks over his shoulder at the intern. “What’s the date today? It will be another week. Next Monday or Tuesday.”

“What? When you administered the bone marrow biopsy, results were only going to take a week. It’s been about a week and half. And now another week?”

“They made a mistake,” Dr. Foley says impassively. Talking to him is like talking to the broad, thick bone between a cow’s eyes. “The lab had to rerun the tests because of a technical problem. This happens sometimes. It’s fairly routine. They just restart the test.”

I need more than just information about my disease. I need a relationship with someone who understands my disease. Busy keeping us alive, hospitals have a hard time prioritizing the process of building that kind of relationship. “Do I have a lead doctor yet?”

“Yes,” he says. “I think that’s been assigned. But I don’t remember who it is.”

“I’ll find out,” the intern says.

Two days pass. I finish chemotherapy on Wednesday. It has lasted seven days, twenty-four hours a day. They disconnect me from the IV pole, and I can finally take a shower. Then I wait another four days. Thursday. Friday. Saturday. Sunday. On Monday the results come back, as the last doctor predicted. Another doctor I have never met shares them with me. I have the FLT 3 mutation.