The Emperor of All Maladies: A Biography of Cancer (28 page)

I cannot remember what I said
, or struggled to say, as a measure of introduction. But I felt awestruck. Standing before me against the door, smiling nervously, was one of the survivors of that original VAMP cohort cured of childhood leukemia.

The basement was flooded and the couch was growing mildew, so we sat outdoors in the shadows of the trees in a screened tent with deerflies and mosquitoes buzzing outside. The woman—Ella, I’ll call her—had collected a pile of medical records and photographs for me to look through.
As she handed them over, I sensed a shiver running through her body, as if even today, forty-five years after her ordeal, the memory haunts her viscerally.

Ella was diagnosed with leukemia in June 1964, about eighteen months after VAMP was first used at the NCI. She was eleven years old. In the photographs taken before her diagnosis, she was a typical preteen with bangs and braces. In the photograph taken just six months later (after chemotherapy), she was transformed—bald, sheet-white from anemia, and severely underweight, collapsed on a wheelchair and unable to walk.

Ella was treated with VAMP. (Her oncologists in Boston, having heard of the spectacular responses at the NCI, had rather bravely chosen to treat her—off trial—with the four-drug regimen.) It had seemed like a cataclysm at first. The high doses of vincristine caused such severe collateral nerve damage that she was left with a permanent burning sensation in her legs and fingers. Prednisone made her delirious. The nurses, unable to deal with a strong-willed, deranged preteen wandering through the corridors of the hospital screaming and howling at night, restrained her by tying her arms with ropes to the bedposts. Confined to her bed, she often crouched in a fetal position, her muscles wasting away, the neuropathy worsening. At twelve years of age, she became addicted to morphine, which was prescribed for her pain. (She “detoxed” herself by sheer force of will, she said, by “lasting it out through the spasms of withdrawal.”) Her lower lip is still bruised from the time she bit herself in those awful months while waiting out the hour for the next dose of morphine.

Yet, remarkably, the main thing she remembers is the overwhelming feeling of being spared. “I feel as if I slipped through,” she told me, arranging the records back into their envelopes. She looked away, as if to swat an imaginary fly, and I could see her eyes welling up with tears. She had met several other children with leukemia in the hospital wards; none had survived. “I don’t know why I deserved the illness in the first place, but then I don’t know why I deserved to be cured. Leukemia is like that. It mystifies you. It changes your life.” My mind briefly flashed to the Chiribaya mummy, to Atossa, to Halsted’s young woman awaiting her mastectomy.

Sidney Farber never met Ella, but he encountered patients just like her—long-term survivors of VAMP. In 1964, the year that Ella began her chemotherapy,
he triumphantly brought photographs of a few
such patients to Washington as a sort of show-and-tell for Congress, living proof that chemotherapy could cure cancer. The path was now becoming increasingly clear to him. Cancer research needed an additional thrust: more money, more research, more publicity, and a directed trajectory toward a cure. His testimony before Congress thus acquired a nearly devotional, messianic fervor. After the photographs and his testimony, one observer recalled, any
further proof was “anticlimactic and unnecessary
.” Farber was now ready to leap out from the realm of leukemia into the vastly more common real cancers. “
We are attempting
to develop chemicals which might affect otherwise incurable tumors of the breast, the ovary, the uterus, the lung, the kidney, the intestine, and highly malignant tumors of the skin, such as the black cancer, or melanoma,” he wrote. The cure of even one such solid cancer in adults, Farber knew, would singularly revolutionize oncology. It would provide the most concrete proof that this was a winnable war.

*
Since most of the early anticancer drugs were cytotoxic—cell-killing—the threshold between a therapeutic (cancer-killing) dose and a toxic dose was extremely narrow. Many of the drugs had to be very carefully dosed to avoid the unwarranted but inextricably linked toxicity.

It took plain old courage to be a chemotherapist
in the 1960s and certainly the courage of the conviction that cancer would eventually succumb to drugs.

—Vincent DeVita, National Cancer Institute
investigator (and eventually NCI director)

On a chilly February morning in 2004, a twenty-four-year-old athlete, Ben Orman, discovered a lump in his neck. He was in his apartment, reading the newspaper, when, running his hand absentmindedly past his face, his fingers brushed against a small swelling. The lump was about the size of a small dried grape. If he took a deep breath, he could swallow it back into the cavity of his chest. He dismissed it. It was a lump, he reasoned, and athletes were used to lumps: calluses, swollen knees, boils, bumps, bruises coming and going with no remembered cause. He returned to his newspaper and worry vanished from his mind. The lump in his neck, whatever it was, would doubtless vanish in time as well.

But it grew instead, imperceptibly at first, then more assertively, turning from grape-size to prune-size in about a month. He could feel it on the shallow dip of his collarbone. Worried, Orman went to the walk-in clinic of the hospital, almost apologetic about his complaints. The triage nurse scribbled in her notes: “Lump in his neck”—and added a question mark at the end of the sentence.

With that sentence, Orman entered the unfamiliar world of oncology—swallowed, like his own lump, into the bizarre, cavitary universe of cancer. The doors of the hospital opened and closed behind him. A doctor in a blue scrub suit stepped through the curtains and ran her hands up and down his neck. He had blood tests and X-rays in rapid succession, followed by CT scans and more examinations. The scans revealed that the lump in the neck was merely the tip of a much deeper iceberg
of lumps. Beneath that sentinel mass, a chain of masses coiled from his neck down into his chest, culminating in a fist-size tumor just behind his sternum. Large masses located in the anterior chest, as medical students learn, come in four
T
’s, almost like a macabre nursery rhyme for cancer: thyroid cancer, thymoma, teratoma, and terrible lymphoma. Orman’s problem—given his age and the matted, dense appearance of the lumps—was almost certainly the last of these, a lymphoma—cancer of the lymph glands.

I saw Ben Orman nearly two months after that visit to the hospital. He was sitting in the waiting room, reading a book (he read fiercely, athletically, almost competitively, often finishing one novel a week, as if in a race). In the eight weeks since his ER visit, he had undergone a PET scan, a visit with a surgeon, and a biopsy of the neck lump. As suspected, the mass was a lymphoma, a relatively rare variant called Hodgkin’s disease.

More news followed: the scans revealed that Orman’s cancer was confined entirely to one side of his upper torso. And he had none of the ghostly B symptoms—weight loss, fever, chills, or night sweats—that occasionally accompany Hodgkin’s disease. In a staging system that ran from I to IV (with an
A
or
B
added to denote the absence or presence of the occult symptoms), he fell into stage IIA—relatively early in the progression of the disease. It was somber news, but of all the patients shuttling in and out of the waiting room that morning, Orman arguably carried the most benign prognosis. With an intensive course of chemotherapy, it was more than likely—85 percent likely—that he would be cured.

“By intensive,” I told him, “I mean several months, perhaps even stretching out to half a year. The drugs will be given in cycles, and there will have to be visits in between to check blood counts.” Every three weeks, just as his counts recovered, the whole cycle would begin all over again—Sisyphus on chemotherapy.

He would lose his hair with the first cycle. He would almost certainly become permanently infertile. There might be life-threatening infections during the times when his white counts would bottom out nearly to zero. Most ominously, the chemo might cause a second cancer in the future. He nodded. I watched the thought pick up velocity in his brain, until it had reached its full impact.

“It’s going to be a long haul. A marathon,” I stammered apologetically,
groping for an analogy. “But we’ll get to the end.”

He nodded again silently, as if he already knew.

On a Wednesday morning, not long after my meeting with Orman, I took a shuttle across Boston to see my patients at the Dana-Farber Cancer Institute. Most of us called the institute simply “the Farber.” Large already in life, Sidney Farber had become even larger in death: the eponymous Farber was now a sprawling sixteen-story labyrinth of concrete crammed full of scientists and physicians, a comprehensive lab-cum-clinic-cum-pharmacy-cum-chemotherapy-unit. There were 2,934 employees, dozens of conference rooms, scores of laboratories, a laundry unit, four banks of elevators, and multiple libraries. The site of the original basement lab had long been dwarfed by the massive complex of buildings around it. Like a vast, overbuilt, and overwrought medieval temple, the Farber had long swallowed its shrine.

As you entered the new building, an oil painting of the man himself—with his characteristic half-scowling, half-smiling face—stared back at you in the foyer. Little bits and pieces of him, it seemed, were strewn everywhere. The corridor on the way to the fellows’ office was still hung with the cartoonish “portraits” that he had once commissioned for the Jimmy Fund: Snow White, Pinocchio, Jiminy Cricket, Dumbo. The bone marrow needles with which we performed our biopsies looked and felt as if they came from another age; perhaps they had been sharpened by Farber or one of his trainees fifty years ago. Wandering through these labs and clinics, you often felt as if you could stumble onto cancer history at any minute. One morning I did: bolting to catch the elevator, I ran headlong into an old man in a wheelchair whom I first took to be a patient. It was Tom Frei, a professor emeritus now, heading up to his office on the sixteenth floor.

My patient that Wednesday morning was a seventy-six-year-old woman named Beatrice Sorenson. Bea, as she liked to be called, reminded me of one of those tiny insects or animals that you read about in natural-history textbooks that can carry ten times their weight or leap five times their height. She was almost preternaturally minuscule: about eighty-five pounds and four and a half feet tall, with birdlike features and delicate bones that seemed to hang together like twigs in winter. To this diminutive
frame, however, she brought a fierce force of personality, the lightness of body counterbalanced by the heftiness of soul. She had been a marine and served in two wars. Even as I towered over her on the examination table, I felt awkward and humbled, as if she were towering over me in spirit.

Sorenson had pancreatic cancer. The tumor had been discovered almost accidentally in the late summer of 2003, when she had had a bout of abdominal pain and diarrhea and a CT scan had picked up a four-centimeter solid nodule hanging off the tail of her pancreas. (In retrospect, the diarrhea may have been unrelated.) A brave surgeon had attempted to resect it, but the margins of the resection still contained some tumor cells. Even in oncology, a dismal discipline to begin with, this—unresected pancreatic cancer—was considered the epitome of the dismal.