Being Mortal: Medicine and What Matters in the End

My solution was to avoid the subject altogether. I told Sara that there was relatively good news about her thyroid cancer—it was slow growing and treatable. But the priority was her lung cancer, I said. Let’s not hold up the treatment for that. We could monitor the thyroid cancer for now and plan surgery in a few months.

 

I saw her every six weeks and noted her physical decline from one visit to the next. Yet, even in a wheelchair, Sara would always arrive smiling, makeup on and bangs bobby-pinned out of her eyes. She’d find small things to laugh about, like the strange protuberances the tubes made under her dress. She was ready to try anything, and I found myself focusing on the news about experimental therapies for her lung cancer. After one of her chemotherapies seemed to shrink the thyroid cancer slightly, I even raised with her the possibility that an experimental therapy could work against both her cancers, which was sheer fantasy. Discussing a fantasy was easier—less emotional, less explosive, less prone to misunderstanding—than discussing what was happening before my eyes.

 

Between the lung cancer and the chemo, Sara became steadily sicker. She slept most of the time and could do little out of the house. Clinic notes from December describe shortness of breath, dry heaves, coughing up blood, severe fatigue. In addition to the drainage tubes in her chest, she required needle-drainage procedures in her abdomen every week or two to relieve the severe pressure from the liters of fluid that the cancer was producing there.

 

A CT scan in December showed that the lung cancer was spreading through her spine, liver, and lungs. When we met in January, she could move only slowly and uncomfortably. Her lower body had become so swollen that her skin was taut. She couldn’t speak more than a sentence without pausing for breath. By the first week of February, she needed oxygen at home to breathe. Enough time had elapsed since her pulmonary embolism, however, that she could start on Pfizer’s experimental drug. She just needed one more set of scans for clearance. These revealed that the cancer had spread to her brain, with at least nine metastatic growths up to half an inch in size scattered across both hemispheres. The experimental drug was not designed to cross the blood-brain barrier. PF0231006 was not going to work.

 

And still Sara, her family, and her medical team remained in battle mode. Within twenty-four hours, Sara was brought in to see a radiation oncologist for whole-brain radiation to try to reduce the metastases. On February 12, she completed five days of radiation treatment, which left her immeasurably fatigued, barely able to get out of bed. She ate almost nothing. She weighed twenty-five pounds less than she had in the fall. She confessed to Rich that, for the past two months, she had experienced double vision and was unable to feel her hands.

 

“Why didn’t you tell anyone?” he asked her.

 

“I just didn’t want to stop treatment,” she said. “They would make me stop.”

 

She was given two weeks to recover her strength after the radiation. Then we had a different experimental drug she could try, one from a small biotech company. She was scheduled to start on February 25. Her chances were rapidly dwindling. But who was to say they were zero?

 

In 1985, the paleontologist and writer Stephen Jay Gould published an extraordinary essay entitled “The Median Isn’t the Message” after he had been given a diagnosis, three years earlier, of abdominal mesothelioma, a rare and lethal cancer usually associated with asbestos exposure. He went to a medical library when he got the diagnosis and pulled out the latest scientific articles on the disease. “The literature couldn’t have been more brutally clear: mesothelioma is incurable, with a median survival of only eight months after discovery,” he wrote. The news was devastating. But then he began looking at the graphs of the patient-survival curves.

 

Gould was a naturalist and more inclined to notice the variation around the curve’s middle point than the middle point itself. What the naturalist saw was remarkable variation. The patients were not clustered around the median survival but, instead, fanned out in both directions. Moreover, the curve was skewed to the right, with a long tail, however slender, of patients who lived many years longer than the eight-month median. This is where he found solace. He could imagine himself surviving far out along that long tail. And survive he did. Following surgery and experimental chemotherapy, he lived twenty more years before dying, in 2002, at the age of sixty, from a lung cancer unrelated to his original disease.

 

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