My worst moments in February and March

I haven’t posted for so many months because I haven’t known what to write. It was hard to describe being adrift on a raft in the middle of an ocean—the experience was so boring and so frightening at once. Most days I had nothing to say. Other days I had emotions I didn’t want to revisit.

I relapsed the first week of December. Of the sixteen weeks between then and the end of March, I spent twelve in the hospital. The first six weeks included Christmas, while my children were all home without me. In January, I was released in time for us to have one dinner as a family before Rosalind and Caleb went back to college. Isabelle, who is out of college, is living with us while she looks for a job.

Rosalind is a senior at Pratt, studying photography, and her senior show was scheduled for the last Monday in February. Once home from the hospital, Suzanne and I planned a trip to Brooklyn to see it. As February went on, my blood counts declined to zero, which meant I was highly susceptible to infection. One Monday, exactly a week before Rosalind’s show, I developed a fever in the afternoon and was back in the hospital, on IV antibiotics, that evening.

Lying on a hospital bed Tuesday morning, I spoke to the attending oncologist. The attending role rotates between the oncologists on staff. The attending coordinates with my primary oncologist, who sees me the most regularly. The week I was admitted, the attending was a younger guy, friendly and earnest. He was almost exuberant about explaining medical concepts. Given the kinds of treatments I had, he expected my blood counts to start recovering within a few days. When he heard about Rosalind’s show, he said, “Family milestones are extremely important. I will do everything I can to get you there.” I told him how much I appreciated that.

As the days ticked down to Rosalind’s show, the team gained control of the infection, but my counts refused to budge. On Thursday, the attending asked, “What is the latest date we could discharge you and you could still make it to your daughter’s show?

“Sunday. But I’m not sure it makes sense for me to go to Brooklyn anymore. My counts are so low that I’ll end up in a hospital down there with another infection.”

Shaking his head doggedly, he said, “I am working on some options. We’re discussing it as a team.”

He was still trying on Friday when my primary oncologist came over from her clinic and pulled a chair up next to my bed. She spoke in an empathetic, sorrowful voice. “You still want to fight this, don’t you?”

I told her I did.

She left.

Later that day, I saw the attending in the hallway. “I hear you want to fight this,” he said. “Then it definitely doesn’t make sense for you to go to New York.”

I had to go back to my room and lie on my bed before I understood what this meant. The next day, I asked the attending, “It seems like you put patients into one of two buckets. In one bucket are patients who don’t have a lot of life events left in their future, and you do what you can to get them to whatever’s left. In the other bucket are patients who are going to miss a few life events now in order to be around for more later. Which bucket are you putting me in?”

He wasn’t sure how to answer that.

From the seventh floor in the Feldberg Tower, I stared out at the rooftops and treetops in Boston and Brookline while my family drove to Brooklyn. At the show, Rosalind FaceTimed me. When I saw her face and her installation in the background, I started to cry. This was a milestone on a road that she and I had started together. At eleven, she applied to a middle school arts program, and I wrote an impassioned letter on her behalf. (“Rosalind understands the program, and she wants to be part of it more than anything else she has ever wanted in her life.”) During school vacations, I helped her pick out courses at the Museum of Fine Arts and the Massachusetts College of Art. I bought her a good digital camera and stood in line with her at Portfolio Day, a kind of college fair for visual artists.

While I tried to stop crying, Rosalind described the show and the work she had done. I had seen many of the images before and asked questions about the new ones. Then she walked me around the rest of the gallery, showing me her friends’ photographs. She kept telling me it was okay, that she wasn’t upset. But a few weeks later she told me, “I had a hard time after that call. I kept thinking about all the other things you might miss.”

The next month I spent expecting to leave the hospital. Every weekend I’d say, “I’ll be out by next weekend.” Every night I’d go to sleep thinking, “Tomorrow my counts will start coming up.” Every morning I would wake up swearing, looking at the lab results on my phone. At the end of one week was my birthday. That came and went. At the end of another week Rosalind and Caleb came home for spring break. I was still swearing at my phone the morning they returned to college.

“Are any of my treatments working?” I said Suzanne. “All I want is hard evidence that something is working.” My doctors became increasingly concerned about my counts. One reason blood counts don’t recover is more leukemia in the bone marrow. In December, I didn’t have leukemia in my marrow—only in those strange, solid tumors behind my heart and in my lower abdomen. If leukemia explained my crippled blood counts, this would mean it came back despite all my treatments. This would mean nothing was working.

They did a bone marrow biopsy. Results came back on a Friday. They found no leukemia. My marrow was simply empty—it hadn’t started regenerating. Later that same day, I got results on the latest scans of my tumors. Every time a report came back, I tore into the results with a savage skepticism. “This report measures each tumor differently than the last report. How do we know they are actually shrinking?” But this Friday no amount of questioning could change the evidence: Three of the tumors had shrunk to half their original size, and the fourth had disappeared. Here finally was evidence that my treatments were working.

But there is no good news, in my situation, without bad news. Another week went by with no movement in my counts. The medical team decided it was a medication interaction. But all my treatments had now long been stopped, and they didn’t know how to jumpstart my marrow. There weren’t many options that wouldn’t also boost the leukemia.

Again, my primary oncologist pulled a chair up to my bed. Again, the same empathetic, sorrowful voice. “If your counts don’t come back soon, Doug, we may have to do another transplant with your sister’s stem cells.”

I stared in silence at the mini fridge beyond my feet and the nurse’s keyboard and monitor above it. “Do we really have to do that?”

“It’ll be a discussion. We’ll give it a bit more time. Then we can decide together.”

“That’s a such big step.” I looked at her. “I don’t know if I can do that.” All the chemo. The weeks in the hospital and all the months it takes to recover. No restaurants. No travel. No walking in the woods or digging in the garden. No swimming or fresh strawberries or eating cherry tomatoes off the vine. I lost a summer the last time I had a transplant, but a question lurked now that hadn’t before. What if this is my last summer? “That’s the risk, right?” I said to her. “I will go through the transplant. Then in September or October, we’ll find out the leukemia is still there or coming back anyway, and I will have lost all that time with my family.”

“You don’t have to do it,” she said. “You can choose not to fight. You can spend the summer with your family.”

Again, the question of which bucket. “I don’t want to fight if the chances are vanishingly small.”

“Well,” she said wisely, “we should talk about what you mean by ‘vanishingly small.’”

“It would help to hear a number.” My oncologists have always been reluctant to give me any kind of number about survival, no matter how often I asked. “But I know you don’t want to do that.”

“I can give you a number,” she said. “It isn’t based on data, but on my clinical experience. You have about a ten percent chance of a long-term positive outcome.”

“What do you mean by a long-term positive outcome?”

“Surviving three to five years.”

“A ten percent chance,” I repeated, “of surviving three to five years.”

Suzanne wasn’t there. She came the next day, and we had the same conversation together with the doctor. It’s not the first time we have heard that my prognosis isn’t good, but that small number opened up a limitless feeling, as if here on the seventh floor of the Feldberg Tower the walls and floors and all the other buildings outside the window disappeared and we had a brief moment of consciousness while we began to fall.

When I first relapsed, I had chest surgery to biopsy the tumor on my heart. They took my wedding ring off while I was under anesthesia and gave it back in a Ziplock bag. I put it on only to wrestle it back off for a series of MRIs. Not knowing what would happen next, I finally gave it to Suzanne, who wore it on a chain around her neck. Somehow the empty dent on my finger, where the ring will have sat for twenty nine years this June, contributed to that lost, limitless feeling—like hanging in the air or drifting on a raft in an ocean.

After the doctor left, the two of us sat alone together. Suzanne almost never cries. She has been so calm and so strong since the leukemia first came back, but that little number almost broke her.

“I don’t know what I am going to do,” she wept. “There are all these things you do for the kids that I’m not good at.” The kids come to me when they need help writing resumes, finding apartments, doing their taxes.

“There are plenty of things you do that I am not good at,” I said. Our kids go to her when they are upset. She regularly spends two or three hours on the phone with someone.

“I know that’s true,” she said, looking for a tissue and dabbing her eyes. But it wasn’t her point. “We’re like a yin and a yang.” She took my hand in both of hers. “It’s going to be so hard to just be the yin.’

I cried about this later, but at that moment I had no tears. What I felt can only be described as defiance. Yes, maybe I would have to go through a transplant. Yes, maybe the leukemia won’t go away or would return. Yes, maybe this would be my last summer and I would miss it. But I wanted my wedding ring back. Suzanne took it off the chain. I slathered my swollen finger with lotion and forced it on.

A week later, in extreme slow motion, my counts started coming back.