Hospital (42 page)

She didn’t ignore the pain. “I’m very diligent about going to the doctor,” she told me. Her mother had died of a rare form of cancer that had eluded doctor after doctor, test after test. Sharon was careful. For her back pain, she went to her chiropractor and physical therapist. Sam arranged for a pelvic sonogram, which was followed a few months later by a CAT scan. The pain widened from her back to her right side to her left side. A neurologist examined her, and a pain specialist told her she had a pinched nerve. The painkillers he gave her helped for a while, but by the summer of 2003, she was miserable again.

They didn’t go to the Berkshires that summer. Sam was consumed with the cancer center, working seven days a week. Sharon was consumed with pain. Over Labor Day weekend in September, they finally went to the country, where Sharon spent the weekend lying on the couch. Back in the city, more trouble: Sam’s mother, suffering from Parkinson’s and dementia, was taken to the hospital; though a Do Not Resuscitate order was prominently displayed on her refrigerator, she had been intubated and died in a coma a few days later.

The following week, after the Kopels observed shivah, the seven-day mourning period, Sharon had another MRI for her spine. She had postponed the test for a week because of her mother-in-law’s death.

That night after dinner, Sharon said, Sam told her she had to go for another test the next day, and she said she couldn’t, she had a dentist’s appointment. He was insistent, she recalled. “You’re not going to the dentist, you’re going to drink this stuff,” referring to the barium solution, which she described as “banana-tasting chalk.” She told this story with a wistful look of amusement, as though recalling a romantic moment rather than the prelude to her death sentence.

“Which goes to show I did teach him something,” she said. “No bad news before dinner is over.”

The next morning she recalled taking a change of clothes, because after the test she and Sam were going straight to the groundbreaking ceremony. “You don’t want to look like you’ve been to the doctor,” said Sharon.

She recalled Sam saying, “You have ovarian cancer,” and her asking, “How? They looked behind every nook, every corner, every cranny—how?”

She didn’t remember much after that, except that she did change clothes and went with Sam to the celebration of his triumph—their triumph.

Pam Brier told me that the instant she saw the Kopels arrive at the groundbreaking ceremony, she knew that something was wrong. “I could just tell by the looks on their faces that things were not good,” she said. “I remember looking at Sam and Sharon and thinking, ‘Maybe they had a fight.’ They just did not look good, and they definitely came in later than other people.”

Brier always had sensitive radar for the placement of people and things, but her antennae were particularly alert that day, less than three months after the accident that had almost killed her and her husband. Peter was still in the hospital, and she had just come back to work. This was her first public appearance, and she was determined to give the impression that she was in control of the hospital. She left her wheelchair in the car, out of sight of the gathered local officials and hospital personnel, and used a walker to make her entrance.

“I was really focused on trying to move one foot in front of the other and get through the thing, because it was really hard,” she recalled.

Later, after she learned why they looked stricken, a thought occurred to her, a thought that stayed with her throughout her recovery and that revealed much about Brier’s intricate psychology. “It was like you look at two planes intersecting in the air, and you see that for one the trajectory goes one way and for the other, something else,” she said. “I thought, ‘Here you are, Pam, and your trajectory is so positive, and Sharon’s is so negative. Listening to accounts of Sharon getting sicker and sicker was so significant to me—aside from the irony of the whole thing, and the tragedy of the whole thing—she was the person I kept in mind as I got better and better. As I got strong and stronger and more and more back in the world, I stopped thinking about it so much. But in those first months, that first year, you can believe she was in my mind as the possible other course.”

In 1961, 90 percent of the doctors responding to a survey by the
Journal of the American Medical Association
said they would not tell their patients they had cancer. By 1979 almost all the physicians responding to a similar survey (97 percent) said yes, they would tell their patients. In 1977, reflecting on this sea change in attitudes, an oncologist named Franz J. Ingelfinger delivered a lecture at the Harvard Medical School shortly before he retired as editor of the
New England Journal of Medicine.
In that lecture he defended the physician’s right to treat patients with “authoritarianism, paternalism and domination.”

Ingelfinger used his own experience as a cancer patient to support his position. After he was diagnosed with a glandular cancer, which was removed surgically, he faced the decision of whether to receive prophylactic chemotherapy and/or radiation therapy. His surgeon saw no visible evidence that the cancer had spread, but it was possible that it had. Both chemotherapy and radiation therapy could produce debilitating side effects. The physician /patient was bombarded with well-meaning, contradictory advice, all of which made him more indecisive. One day a friend told him, “What you need is a doctor.”

“He was telling me to forget the information I was receiving from many quarters,” said Ingelfinger, “and to seek instead a person who would dominate, who would tell me what to do, who would in a paternalistic manner assume responsibility for my care.”

Ingelfinger followed his friend’s advice. “My family and I sensed immediate and immense relief,” he said. “The incapacity of enervating worry was dispelled.” Ingelfinger recognized that paternalism was a form of arrogance and that “a physician can be beneficially arrogant, or he can be destructively arrogant.” He defined destructive arrogance as “accentuated by insolence, vanity, arbitrariness . . . lack of empathy.”

The
New England Journal of Medicine
published Ingelfinger’s lecture as an article called “Arrogance” in December 1980, eight months after the author’s death. Sam Kopel sent me a copy when I asked him what his philosophy of medicine was. “I can’t say I have a philosophy,” he told me, “but the way I practice has been heavily influenced by something I read twenty-odd years ago. You must present the options as honestly, fairly, and effectively as you can, and you have to frankly admit to what you don’t know. But you can’t dodge the responsibility for making a recommendation.”

I remembered Estee Altman’s evaluation:
Dr. Kopel is very brilliant but very rational, scientifically makes the decisions about what needs to be done.
He could seem cold.

“Some people think I’m too arrogant,” he acknowledged, as though reading my thoughts. “Because I will actually voice an opinion and strike out in a direction and say, ‘Here’s what I think you ought to do.’”

He tried to be deferential to Sharon’s physicians, but he didn’t allow himself the relief of relinquishing responsibility. He couldn’t. When Sharon and Sam began dating and it was obvious to her they might marry, she sat with him on a bench in a garden by a pool on the Brooklyn College campus. She told him she had something very important to tell him.

When she told him she had diabetes, he didn’t fully comprehend the gravity of her condition—he hadn’t yet started medical school—but he recognized that it was serious. Instead of being scared off, however, he found himself drawn by her need. It was an attraction as vital as her cute face and deceptively insouciant reddish pixie haircut. Sam told me, “I grew up in a household with a father who was a double amputee. I was used to taking care of someone. Sharon being ill . . . somehow made it more compelling.”

Over the years he abdicated to her physicians—and he didn’t. He was Sharon’s husband but also her medical adviser and medical director at the hospital where the fatal illness was discovered. When she went for the spine MRI the day before the groundbreaking of the cancer center, the radiologist didn’t call the patient with the results; he called her husband, the medical director, with his report: The radiologist saw some kind of growth, involvement of the right kidney.

Sam Kopel and I discussed many things over the next few months following Sharon’s death, but more than a year would pass before he sat in his office in the cancer center and showed me his wife’s CAT scan on his computer screen. It was one of a few dozen images of Sharon’s insides that had been taken over the years; some part of her was now stored in the hospital’s hard drive.

First we looked at a CAT scan taken in February 2003. On the computer I saw a swirling bunch of lines, resembling a satellite radar map on the Weather Channel, settling into definable shapes. Sam pointed. “Now, liver looks perfectly okay. Vena cava, normal bile ducts.” He pointed to splotches. “That’s fat.” Then: left kidney, right kidney, guts, aorta, pelvis, uterus, fibroids, rectum, bladder, vagina. Click. Click.

Then he brought up the fatal picture, taken seven months later, on September 25, 2003. Kopel showed me what he saw when he stood behind the technician and watched the computer monitor as sixty-four X-ray detectors beamed in on his wife, integrated the data, and generated a high-speed image in maybe ninety seconds.

First he saw tiny speckles in her lungs, which didn’t worry him. Seconds later the pulsing picture came into focus as her liver. “To my horror I see these big lesions, and they’re instantly recognizable,” he said, pointing to the screen. “A normal liver looks smooth, like a slice of pâté,” he said in a professorial voice. “The lesions are actual holes, like Swiss cheese.”

“Were you anticipating what you saw?” I asked. We both kept our eyes on the screen.

“I deliberately made myself blank,” said Kopel. “I’ve been in this business long enough to know that in an individual patient anything can cause anything. You can jump to conclusions about a population of patients, but not an individual.” He told me, “I knew there were ten benign things it could be. A large fibroid or a kidney stone or a band of adhesions from a previous appendectomy. But it also could be malignant.”

He knew the possibilities, hopeful and dire. Yet he said, “I was not anticipating what I saw next.”

The screen showed a large mass. “Almost the size of a grapefruit,” said Kopel. “A large orange.” He had little doubt. This was cancer.

He was honest with Sharon and he wasn’t. “I didn’t tell her everything,” he said. “I told her there was a mass. I wasn’t going to lie to her. I told her there was a mass blocking the kidney and we’d take some steps to take care of it.”

During this conversation Sam Kopel said, “If you were to write it the way it was, it would seem too operatic.” That’s when he talked to me about Violetta, the doomed heroine in
La Traviata
and why he loved opera.
You know
she’s a striver, that she’s good, that she is doomed by illness,
Sam said.
In the first minutes of the overture. Those high violins, those dissonant notes. Go home and listen to it. That is a musical depiction of tuberculosis, of disease. It’s perfect.

“Forget the opera,” I said. “What was your life with Sharon like in real life?”

His thin face seemed to shrink behind his glasses. “We had our ups and downs,” he said slowly. “We were very different people. I had a very difficult time getting used to her circumscription. She was afraid of going out and daring to do things—hiking, skiing, exploring. She was more into people and relationships, and I was into new adventures. So that was a friction. On the other hand, she kept me safe and I provided whatever I did for her.”

He leaned forward to turn off the computer. “I had one major regret, in the distant past,” he said. “Because of the diabetes, she didn’t want to have any more kids after Lisa. That was a big problem. The pregnancy accelerates complications of diabetes, that’s true. You can minimize that by taking very tight control of the diabetes, also true. But she never took tight control of the diabetes until very late in life. She ate whatever she felt like. She gained weight, so be it. That was a friction.”

I looked at the photograph on the wall, showing Sam leaning in to kiss Sharon’s neck on his fortieth birthday, his eyes closed dreamily, a big grin on her face.

A false positive?

Kopel was trained to keep a poker face but his voice trembled. “In some ways she was my lightning rod,” he said. “She was all emotion. I’m all analysis and intellect. We fought. But we were partners. She could sense who was good and who wasn’t. She really, really hated folks who took advantage. She was a rock through all those hassles with the cancer center, completely and unambiguously my compatriot. She could hate, but good.”

“Was that a good thing or a bad thing?” I asked.

He paused for just a second. “I think it was overall a good thing,” he said.

The afternoon of the cancer center’s groundbreaking, Sharon and Sam stayed in his office in the old oncology practice, a block away from where the new center would be. Sam called a Maimonides surgeon to arrange for a stent and a chemotherapy port. He called a former colleague of Jay Cooper’s at NYU, who agreed to manage Sharon’s treatment. They decided she would have the chemotherapy at Maimonides, by Dr. Huang, for convenience, because sometimes it would take all day for the chemo to drip into her veins. Beth Popp handled her pain; Sharon’s internist took care of her diabetes. Sam Kopel acted as intermediary.

What about Ingelfinger and his recommendation to relinquish responsibility?

“I have to straddle,” Kopel said. “I saw to it she had doctors rather than a million doctors. I tried to step away, but you can’t do it. She expected me to give her advice. I went with her to the oncologist to remind her of the side effects she wouldn’t mention. I might tell him about a new symptom I had seen or that she wouldn’t tell him about. Most patients don’t tell their doctors bad news.”