Grim satisfaction (2018)

On Friday evening, maybe an hour after that conversation with my family, the wheelchair rolled back into my empty room and right up to the side of my bed. I could no longer walk from the door. And the night that followed was the worst I had so far.

My fevers could have been from infection or from the leukemia or both. They wouldn’t know for sure until they started chemotherapy, but they couldn’t start chemotherapy until they knew what kind of leukemia I had. The bone marrow biopsy happened on Thursday. Initial results could be available tomorrow. More detailed results from genetic testing would take at least a week.

And now it is tomorrow. Saturday. A few minutes before seven. The sky is lightening but it is not light. My nurse slips sideways through the door and finds me sitting up in bed, awake. They have initial results from the biopsy, which the doctors will explain during rounds. “Does your wife want to be here?”

I tell her that she does.

“Then call her and ask her to come early. The doctors are starting rounds at eight this morning, and you are first or second on their list.”

Suzanne rushes out of the house alone and comes bursting through my door a few minutes after eight. “Oh.” She is still adjusting her mask and gloves. “The doctors aren’t here yet?”

No doctors show up for hours. We wait alone together, listening to the hallway. Nurses talking. The jangle of the cart carrying food trays. A vacuum cleaner. Someone dragging a trash bag. Our only interruption is when the nurse comes in to administer pills or hang a different bag of medication on my pole.

“They think what I have—” It is still hard for me to speak. There isn’t enough air in my lungs for my voice box. “—is probably Acute Myeloid Leukemia.”

“When did you hear that?”

“Yesterday. But they didn’t know.”

But now everyone outside the door knows. The two of us inside the door don’t. When the nurse slipped sideways through the door this morning, I was reading about Acute Myeloid Leukemia. What I read frightened me, but I don’t mention this to Suzanne.

I am on the phone ordering lunch and the nurse is waiting with the thermometer in her hand when the doctors arrive, two of them. They each pull over a chair and sit side by side at the foot of my bed. One of them introduces himself. “I am Dr. Ian Dolan and I am the oncology fellow on service this week.” The other doctor is silent. “Shall we get started?”

“Can I take his temperature first?” This is the nurse, holding the thermometer. “Sorry, Dr. Dolan.”

There is silence while I sit there with the thermometer in my mouth. I am pale. I look swollen because I am retaining water. I needed a haircut when I first fell sick and now my overgrown hair is matted with sweat.

“99.8.” The nurse reads the thermometer.

“All right,” Dr. Dolan says. “Where would you like to start, Mr. Smith? What questions do you have?”

Suzanne sits in a chair next to my head, holding my hand. “I really only have one question. What kind of—” I keep losing my breath as I talk. “What kind of leukemia do I have?”

“So sorry,” the nurse interrupts again. “I’m not sure about 99.8. I don’t trust that number. Let me try one more time.” Silence again, except for me clearing my throat.

“101.2,” she announces. “That seems more accurate.”

“So we do have some updated information,” Dr. Dolan says solemnly. He sits straight in the chair and makes few movements with his face or his hands. He is still but not stiff. “We now know that what you have is AML, Acute Myeloid Leukemia.”

“What does that mean?” Suzanne asks.

“AML is a very serious disease. A very, very serious disease. And if we don’t treat it, it’s a fatal disease.” He talks slowly and precisely, as if rehearsing each phrase in his mind before uttering it. “Have you ever known anybody who had leukemia?”

I knew someone ten years ago who had leukemia. We talk about what happened to him.

“Well, things are different from ten years ago, or even five years ago.” Dr. Dolan glances at Suzanne. And then he contemplates the hands folded in his lap. “Have you ever heard the statement, ‘The best time to have cancer is tomorrow’?” He looks up at me. “You will often hear doctors saying this. Why do they say this? They say this because medical advances have now reached such a rapid pace. For example, this is the end of a remarkable year for the treatment of your disease. The FDA has approved a record number of new targeted therapies. And additional therapies may soon be approved that could help you in the future—” He pauses to limit his promise. “Depending on the exact nature of your genetic mutations.”

“Which we won’t find out for at least a week,” I say.

“At least a week,” he responds. “That is correct.”

“When you think about AML—” I stop to catch my breath. Both doctors are leaning forward to hear me. “—what are my risk factors? Where do I seem like a good candidate for full recovery and where do I not?”

“Good question,” Dr. Dolan says. “Very good question. In many ways, you have good prognostic features. What do I mean by that? You’re not over the age of sixty. Your health otherwise, your organ function—heart, liver, kidneys, lungs—are good. You are very active. These are all positive parts of the picture. But we won’t know the entire picture until we have the results of the genetic testing. A great deal depends on the DNA features. Certain markers, certain mutations—they confer different risks.”

He contemplates us both. He sees something in Suzanne’s face. “Did you have a question?”

“No,” she says. She often seems about to talk when she is only thinking. “Sorry. I didn’t.”

“Amidst everything else that makes this disease so challenging, it is also very, very hard to predict. I really wish we could give clear guidance on your question. But we can’t. You have a lot going for you that is good and favorable and should certainly give you hope.” Again, a pregnant pause. He is trying to balance being truthful with being hopeful. “And, well, not to lose hope. Which can happen in a lot of these cases. But you are up against a very serious disease. We hope and we aim and we try to get rid of this forever and to cure it.”

After the turmoil and suspense of the past few days, there was grim satisfaction in knowing one thing for sure. I emailed my sisters. They both replied within minutes. My sister Mandy wrote:

I called my mother, who was out there alone in that dark valley at the darkest time of the year. The temperature hadn’t risen above zero since we left, and her pipes had frozen. Being from a clinical family, she wanted the clinical detail first. I gave her the clinical detail, or at least what I understood. And when the call ended, I cried for the first time that day. She buried my father. Then she buried her only brother, who died suddenly of a heart attack in his fifties. She remarried and divorced and then her second husband committed suicide and she buried him. I didn’t want to be the last loss she had to face. I didn’t want her standing by my graveside summoning her willpower, her force of forward motion, one final time.

We called my father “Dad” while he was alive, but we referred to him as “Daddy” after he died. Maybe this made sense initially. My sister Emily was only six at the time. But it continued through high school and through college and then into adulthood. “Daddy’s grave.” “Daddy’s jacket.” “Daddy’s collected works of Freud.” We all struggled to stop, but “Dad” felt wrong in our mouths—at least in mine. One moment of inattention and I added the second syllable. I can still revert to “Daddy” in my fifties. My sisters do it too. My mother never stopped.

My oldest daughter was home for the month of January. She had a lot of time, and she spent most of it visiting me and traveling back and forth with Suzanne. In the car, Suzanne would talk about what was happening. Isabelle would listen.

“Mom?” she said gently. This was maybe the fourth or fifth day after I was hospitalized.  They were standing in our kitchen, still wearing their coats. “You’ve started calling him ‘Daddy.’”

“Oh,” Suzanne said. “That’s not good.”