By Jeanne Safer, published on January 1, 2014 - last reviewed on January 17, 2014
It took the hematologist only five minutes to examine the cells he had just extracted from my bone marrow and to make the diagnosis. "You have acute promyelocytic leukemia, the rarest type," he said in a straightforward, utterly authoritative manner.
Only six in 10 million people are diagnosed annually with the disease, but it has very high survival rates. It was a dizzying combination of dreadful and miraculous luck.
Then he told me what the cure entailed. "I'm admitting you to the hospital right now, and you'll be here for a month. The treatment is daily intravenous arsenic and oral Vitamin A. After that you'll have nine more months of outpatient chemotherapy, one month on and one month off."
I could hardly conceive it then—and still find it hard to grasp—that I had a blood cancer so virulent that it could have killed me in three days without aggressive treatment. I'd been unusually tired once or twice in the previous month, but I didn't feel sick. The only thing I had noticed were bruises in odd places; when one materialized on my forearm before my eyes, I was finally sent for a blood test.
When the technician saw the results, the expression on his face made it clear that something was horribly wrong: I had virtually no platelets in my body, but I did have thousands of rogue white blood cells that could have invaded my organs and caused me to bleed to death. My emergency appointment with the hematologist confirmed the worst.
Strangely enough, as I received the news, I didn't weep or panic. Instead, a calm came over me. I turned to my husband and said, as much to myself as to him, "I have to find a way to deal with this. I can't just endure it, because that would destroy me. Somehow I've got to make use of it." I didn't know what was in store, but I knew it would be like nothing I had ever experienced, that I would be alone, and that it would take every effort of will to get myself through it. Thanks to the mental habits I had nourished in lesser trials, I was fully equipped when this catastrophe befell me.
I was sent immediately to the emergency room. The hematologist assured me that my leukemia was "curable, guaranteed," but there was no time to go home—even for a change of underwear. "Thank you for your candor," I told him. "I put myself in your hands." He was, after all, the expert on my disease.
But I, a seasoned psychotherapist, was the expert on my psychological needs, and I knew instantly that I had to put myself in my own hands as well. My doctor was in charge of saving my life—but my job was to preserve my identity while he did it.
One of the first things I did was decorate my room, scenting the air with lavender and mint, using my own zebra-printed sheets, draping a red Moroccan kilim from my office over the television screen so it would always be tuned to my favorite "channel." I decided I could best sustain myself not by seeking distraction, but by concentrating on things that mattered to me, so I read my favorite books (Jane Austen) and played music I loved (Bach by Glenn Gould).
I didn't see myself becoming a patient whose life hung in the balance; instead I was girding for battle, the battle to remain myself no matter what I might have to endure. The biblical image of Jacob's wrestling match with the dark stranger became my touchstone. I visualized my illness and treatment as a struggle with a shadowy, menacing adversary who was stronger than I was—but one I would bend to my will.
"I will not let it go until it blesses me," I wrote to my friends after I was admitted. I wrote to my patients that I was determined to learn from this ordeal, and that whatever it taught me, I would share with them. I took notes. Even when my hands shook so much from massive doses of steroids that I could not write, I held one hand with the other and printed. I was asserting to my patients that I was still their therapist, still a model for them, still a student of my own experience.
Indeed, right there in the hematologist's office, an idea came to me: I could use the hospital setting, like a stage set, to make a dramatic point. One of my patients was refusing to attend his only daughter's wedding and walk her down the aisle because her fiancé had offended him. So the second night of my hospital stay, I wrote to him and asked him to visit me. I said that I wouldn't charge him for the session because I was going to do all the talking. When this good-hearted but terminally stubborn and vengeful man appeared, I sat down opposite him, surrounded by monitors and IV poles—my "props"—and said, "This could be you. We never know what's going to happen in our lives. Don't be an asshole. Go to the goddamn wedding." And go he did.
At first, I was confined to my hospital room; walking around meant the possibility of tripping and falling—and the risk of cerebral hemorrhage. But once the danger had passed, I started walking as much as I could, down the long, empty, echoing hallways and past the windows looking out onto other hospital buildings. Soon I discovered, in a cul-de-sac of a multilevel roof where several windows came together, that a weed had managed to grow (how I couldn't imagine, so inhospitable was the environment). The bit of soil was invisible to me.
But there it was—spiky, unlovely, battered by the wind that was constantly blowing. A dandelion would have looked glamorous in comparison. I was comforted and astonished by its will.
Every day thereafter I sought out this stalwart green talisman that held on between stones and pieces of concrete and tar paper. Somehow it survived and even blossomed, after a fashion.
I did not want to see trees or flowers; they would have reminded me of the untouchable outside world, and my longing for my normal life would have been unbearable. I wanted to see my weed. I wanted to be my weed.
My hematologist was dedicated, but unused to having a patient who didn't automatically defer to him. When I became desperate to alleviate the truly awful migraines that were a side effect of the arsenic, I asked him to consult his colleagues at the research center that had pioneered my treatment, in hopes that they might be able to recommend a remedy.
When I checked to see whether he had done so, he said, "Yes; my colleague told me he has never seen anybody with migraines like yours. He said, 'I guess people are tougher in Texas.'" I couldn't let this stand. "Dr. G," I responded, holding back tears of rage, "toughness has nothing to do with it. This is physical agony, not weakness of character." He backpedaled immediately. "I was just joking," he said. "I know they're bad." Calling him on this remark—with the right affect—was essential for my dignity.
After I got out of the hospital, I couldn't wait to start swimming—my personal form of therapy. But I wasn't supposed to get my arm wet because of the risk of infection from the catheter inserted into it. For the next nine months, I wasn't even going to be allowed to take a shower without wrapping my arm in Saran Wrap. I knew that I would feel more like myself once I got in the water; I told my doctor I wanted to replace the catheter with a subcutaneous port in my chest, but he objected: "Why have another procedure?"
Still, I opted to undergo surgery; after that I could swim and bathe as much as I wanted. Plus, the device was invisible, so I looked—and felt—normal.
My first posttreatment checkup was a year after I initially walked through the hospital door. Although it had been only four months since I'd last been there regularly, I already felt like a visitor rather than a resident—and I wore earrings for the first time to reinforce the fact. After my appointment, I said hello to several people who had been especially kind to me, and then, with trepidation, I went back to the leukemia ward.
When I alighted into that familiar maze of antiseptic hallways, I went immediately to see my weed. I cautioned myself not to be upset if my old companion-in-arms had been cut down, and indeed I found that it was no longer there. But one of its still-tiny progeny was growing nearby, so young it didn't have spikes yet. Then I noticed that in a protected spot up against the window, a foot-high maple tree had also managed to get a foothold—a more permanent beacon of survival.