Rainbow snowflakes (2018)

Children stay guarded in the face of illness and death. What is happening behind those eyes and between those ears? It is hard to know. There are days when Suzanne seems to arrive with three closed books. They hug me on the bed and then distribute themselves around the room, largely silent. There is a certain wisdom to their wariness. I remember this from the months before my father died. You don’t know what will happen. You can’t control what will happen. So you try not to think about it. And children are generally better than adults at not considering the possibilities. What they can’t stop considering, they try hard not to discuss.

Rosalind refuses to acknowledge how worried she is. She answers no questions. Yet when the family visits, she has to arrive with something in her hands. If I ask Suzanne to bring something like charger, Rosalind carries it. Whatever they buy for me—peanuts or chocolate or orange juice—she delivers it. And when someone sends a box to the house, Rosalind carries it into the room, past the foot of my bed, and sets it on the table with both hands as if bringing me this object proves how much she cares. Only then she does she look at me.

In the same way, she brings me things that she has made. These things also get deposited on the table before she looks at me. A painting of a city skyline.

And rainbow snowflakes, which she eventually hangs all around the room.

When whatever she carried through the door has been deposited on the table, Rosalind lies down next to me in the bed. She lies there without speaking, any expression hidden behind her mask, as the rest of us talk around her.

Our conversation sounds like dinner, except no one is talking with their mouth full and Rosalind is silent. She might stay silent for a half an hour or more until Caleb complains about someone at school who also annoys her, or Isabelle mentions a movie or a song or a band she likes, or Suzanne expresses an opinion about politics that she does or doesn’t share. Rosalind starts talking from under my arm. She sits up and drifts down to the end of the bed and then eventually moves off to a chair.

The day I heard the results of the genetic testing, I called my family at home and explained what I had learned. Mutations are what happens in a gene that causes it to be cancer. Different mutations respond to different treatments. Some are easier to cure. Some are harder. The mutations I have are harder to cure, and they put me in a higher category of risk. None of my children had any questions. It was hard to tell whether anyone even listened to what I said, except Suzanne who already heard it.

But when I hung up, Rosalind started crying and couldn’t stop. The next morning, she couldn’t get out of bed to go to school. Isabelle, who was still home from college, brought her to the hospital. Lying under my arm, she did talk to me for a while—about her college applications, and how tense Mom was, and the way everything at home was so different now, and how she couldn’t stop worrying about things that might happen to me. Isabelle listened, knowing exactly when to contribute and what to say. After Rosalind finished talking, we pushed aside the things piled on the table and played games together for the rest of the day.

Like Rosalind, I have trouble acknowledging how worried I am. And I feel guarded, especially around my doctors.

When I finally met my lead doctor, she began by sympathizing with me. “You’ve had a lot of doctors taking care of you, Mr. Smith. You’ve heard many different people explain what the future holds in terms of how we approach leukemia. And I know that can be confusing.”

My cousin Joe was visiting. His brother Mark had left the night before. Joe sat with his feet stuck out in front of him and his hands folded on his stomach, listening and watching.

“Let’s start,” Dr. Dreier said, “with what questions you have.”

And I began by asking when I could go home. “Day 1 was the first day of chemotherapy. It’s Day 15 now. So I’m likely to go home sometime around Day 28?”

“Potentially,” she said gently. “Could be sooner. Could be later.” A tall woman, she wore heavy, dark-rimmed glasses.  She looked like a college English teacher, wearing a white coat. “Now that you are finished with chemotherapy, your blood counts will continue to drop for a few weeks.” She raised her voice at the end of each statement as if asking a question, but she didn’t sound unsure of herself. “So, why do we keep you in the hospital? The reason we keep you in the hospital is so we can monitor you very closely and make sure you don’t develop fevers or other infections.” She actually sounded like she could be very stubborn. Gentle but stubborn. “You’ll go home when your blood counts recover, and everybody’s a little bit different in terms of when that happens. Things fluctuate and I really don’t want you to hang your hat on a specific date. Does that makes sense?”

“Do the mutations I have mean it might be longer before I go home?”

“Yes, so let’s talk about your mutations,” Dr. Dreier  said gravely. “You have heard by now that you have the FLT3 mutation. I have to be honest. That’s not good news. A year ago this would have been decidedly bad news. But it is much better news now because the FDA just approved a drug that targets this mutation.”

“What’s the name of the drug?” Joe asked.

“Midostaurin?” she answered, again raising her voice so it sounds like a question. “Midostaurin is a tyrosine kinase inhibitor. So, what does this mean? What it means is that it inhibits an enzyme in the mutated gene and interferes with the ability of the cancer cells to continue multiplying. Are you familiar with these inhibitors?” she asked Joe.

Joe laughed. “I am not. I’m just a simple anesthesiologist, here to help my cousin.” But his face turned red. “What I do understand, though, mostly from listening to you right now, is that the Midostaurin isn’t chemo but that it supplements the chemotherapy.”

“Yes exactly!” She has seen his embarrassment. “That’s exactly right. What we do is give it after chemo. Chemo finishes on Day 7. Midostaurin is normally started on Day 8.”

“So I would start taking it now?” I asked

“Yes. Today.” A long silence follows. “Any more questions?”

We both shook our heads no.

“Okay, so I just met you and gave you quite a lot of information. I’ll give you some time to think about all this. Then I’ll come back tomorrow to answer any more questions that you might have. Will your wife be here then? I’d like to meet her.”

“But chemo ended last week,” I said to Joe when the door closed. “That drug is supposed to start on Day 8. It’s Day 15 now.”

“Yeah, I was just thinking that.”

“I don’t know why I didn’t ask.”

“I didn’t ask,” Joe said, “because I feel so ignorant. I’m not always so sure I’m helping you, Doug.”

Yanked out of my life and given a diagnosis that has killed many people before me, I want someone to trust but I feel uncomfortable trusting anyone. “Your team of doctors,” Nick says, “is top notch as far as I can tell. There are still a lot of unknowns, but they seem to have the skill and experience to navigate through them.” He is right. I have that same reaction. About half the time. The rest of the time I think to myself, What if I realize later that they made a mistake? I could never prevent that. I don’t know enough.

In the forty five years since my father finally heard his diagnosis, communication about cancer changed. It changed with the amount of hope. When cancer was a simple death sentence, surgeons struggled to know what to say. They couldn’t fix it and thought they had nothing more to discuss. Modern medicine has so much more to say. But a cancer patient still faces some version of the silence my father experienced. He had one simple question, “Did it spread?” He had enough training to understand the answer when he finally heard it. Oncologists today will answer almost any question I ask, but the answers are now so complicated that even other doctors struggle to understand them.

FDA approval of Midostaurin was based on a study published in the New England Journal of Medicine in 2017. Nick found the paper and sent it to Joe, as well as to Suzanne and me. The four of us read it and discussed it, like a book group, before we all met with Dr. Dreier again. And then I tried to cross examine my doctor.

“The first question that concerns me,” I told her, “is the timing of the genetic testing and the administration of the Midostaurin. Results arrived a week later than expected. Because of this, Midostaurin started on Day 15 rather than Day 8. What’s the impact of losing a week?”

“To be honest,” she said, “We don’t know for sure. But I am fairly confident that there will not be an impact. Why am I confident? Think about the mechanism—the tyrosine kinase inhibitor? Whether it starts on Day 8 or Day 15, it is going to do that same work on whatever leukemia cells are left. Does that make sense?”

“I think so. I’m not sure.”

“Then we’ll check how effective the treatment has been when we do a biopsy on Day 21.”

“That’s the next question I was going to ask you. I am supposed to take the drug for fourteen days. In the study, they started the Midostaurin on Day 8 and did the biopsy on Day 21. But we started Midostaurin a week late, on Day 15. If I have a bone marrow biopsy on Day 21, I will have been taking that drug for only seven days—half the number of days that participants took the drug in the study. It seems like Day 21 is too soon for the biopsy.”

“You’ll take the drug for the full fourteen days. The Day 21 biopsy will happen before that course of treatment is complete. That biopsy is purely directional. It just helps us decide whether treatment is working. We’ll give you another bone marrow biopsy on Day 28.”

“So whether we start now or a week ago, the benefit is largely the same.”

“That’s exactly right.”

“And how are you thinking about my overall prognosis?”

“We have seen some pretty impressive results from Midostaurin.”

“So everyone is feeling favorable about my odds?”

Oncologist won’t answer quite any answer you ask. “Everyone is feeling favorable about how you’re doing so far.”

The more my doctors explain, the closer I draw to the edge of everything I don’t know. It is not much different than standing at the service desk in a dealership and staring at a repair estimate for a car you have to drive tomorrow. You can insist on explanations. You can demand to see the worn timing belt, or the old fuel pump, or all four disks and calipers, but you can’t tell what was wrong with them. And you don’t know if the price for replacement parts or the time charged for labor is fair. All you know is that you need the car tomorrow. This is my life. These are my children that I will leave behind. But like that moment at the dealership, I am largely helpless. I can trust their answers, or I can find another garage.

A few days before my cousin Mark came to visit, he bought himself sweat pants and a sweatshirt. He tried them on at home and decided they were so comfortable that I needed them more than he did. He arrived with them, as well as a hat that his girlfriend knit for me. Robert, who slept on the bunk above me freshman year, lives in Minneapolis. He arrives with biographies. My other college roommate lives just outside of Boston. Each time he comes, Kurt asks if he can bring anything and is disappointed if I ever say no. Nothing? Really? And he’ll suggest things I might need. Sarah is someone else I have known since we were eighteen. She works at the Museum of Fine Arts, which is near the hospital. Each time she visits, she carries a bag from the gift shop. A book about modern painters. A flip book by M.C. Escher. A small Van Gogh print. Like Rosalind, everyone wants to arrive with something in their hands.