Late one evening in the spring of 2005, toward the end of the first year of my fellowship, I sat in a room on the 10th floor of the hospital with a dying woman, Germaine Berne. She was a vivacious psychologist from Alabama. In 1999, she had been struck by nausea, a queasiness so sudden and violent that it felt as if it had been released from a catapult. Even more unsettling, the nausea had been accompanied by a vague sense of fullness, as if she were perpetually stuck devouring a large meal.
Germaine had driven herself to the Baptist Hospital in Montgomery, where she had undergone a barrage of tests until a CAT scan had revealed a 12-centimetre solid mass pushing into her stomach. On Jan. 4, 2000, a radiologist had biopsied the mass. Under the microscope, the biopsy had revealed sheets of spindle-like cells dividing rapidly. The tumour, which had invaded blood vessels and bucked the normal planes of tissue, was a rare kind of cancer called a gastrointestinal stromal tumour, or simply, a GIST.
The news quickly became worse. Her scans showed spots in her liver, swellings in her lymph nodes, and a spray of masses peppering the left lung. The cancer had metastasized all over her body. A surgical cure was impossible, and in 2000, no chemotherapy was known to be effective against her kind of sarcoma. Her doctors in Alabama cobbled together a combination of chemotherapeutic drugs, but they were essentially biding their time. "I signed my letters, paid my bills, and made my will," she recalled. "There was no doubt about the verdict. I was told to go home to die."
In the winter of 2000, handed her death sentence, Germaine stumbled into a virtual community of co-sufferers - GIST patients who spoke to each other through a website. The site, like most of its bloggers, was a strange and moribund affair, with desperate folks seeking desperate remedies. But in late April, news of a novel drug began to spread like wildfire through this community.
The new drug was none other than Gleevec - imatinib - a chemical found to be active against chronic myelogenous leukemia.
Germaine pulled strings to get enrolled in one of these trials. She was, by nature, effortlessly persuasive, able to cajole, badger, wheedle, pester, beg, and demand - and her illness had made her bold. ("Cure me, Doc, and I'll send you to Europe," she told me once - an offer that I politely declined.) She worked her way into a teaching hospital where patients were being given the drug on trial. Just as she was being enrolled, Gleevec had turned out to be so effective that doctors could no longer justify treating GIST patients with a placebo pill. Germaine started on the drug in August, 2001.
A month later, her tumours began to recede at an astonishing rate. Her energy returned; her nausea vanished. She was resurrected from the dead.
Germaine's recovery was a medical miracle. Newspapers in Montgomery picked up the story. She doled out advice to other cancer victims. Medicine was catching up on cancer, she wrote; there was reason for hope. Even if no cure was in sight, a new generation of drugs would control cancer, and another generation would round the bend just as the first one failed.
In the summer of 2004, as she was celebrating the fourth anniversary of her unexpected recovery, the cells of Germaine's tumour suddenly grew resistant to Gleevec. Her lumps, having remained dormant for four years, sprouted vengefully back. In months, masses appeared in her stomach, lymph nodes, lungs, liver, spleen. The nausea returned, just as powerfully as the first time. Malignant fluid poured into the cisterns of her abdomen.
Resourceful as usual, Germaine scoured the Web, returning to her makeshift community of GIST patients for advice.
She discovered that other drugs - second-generation analogues of Gleevec - were in trial in Boston and in other cities. In 2004, on a telephone halfway across the country, she enrolled in a trial of one such analogue called SU11248 that had just opened up.
The new drug produced a temporary response, but did not work for long. By February, 2005, Germaine's cancer had spiralled out of control, growing so fast that she could record its weight, in pounds, as she stood on the scales every week.
Eventually her pain made it impossible for her to walk even from her bed to the door and she had to be hospitalized. My meeting with Germaine that evening was not to discuss drugs and therapies, but to try to make an honest reconciliation between her and her medical condition.
As usual, she had already beaten me to it. When I entered her room to talk about next steps, she waved her hand in the air with a withering look and cut me off. Her goals were now simple, she told me. No more trials. No more drugs. The six years of survival that she had eked out between 1999 and 2005 had not been static, frozen years; they had sharpened, clarified and cleansed her.