On the basis of full disclosure (2018)

Our station wagon is parked next to the pumps at a gas station. It is dusk, and an attendant has just finished filling our tank. I am sitting directly behind my father, who is looking up from the credit card slip on a clipboard to argue through the open window. He ordered Regular. The charge slip shows the price for Premium.

“I won’t sign it.”

He tries to hand back the clipboard, but the attendant won’t take it. The man insists that he sign. He just insists, over and over again. Then my father detonates. He yells, throws open the door, and runs at the man, leaving the clipboard and the credit card and the slip on the seat. And now he chases him around the back of our car. The man sprints inside the small office and locks it against him. My father pounds his fists on the scratched and dirty glass door as the man, overwhelmed by his rage, retreats to the back wall.

We had been at the farm with the Schwartzes. We left suddenly. Marc Schwartz remembers seeing my parents packing the car, obviously upset. But they explained nothing to him. Then he stood on the front lawn and watched us drive away. It was August 1972—the summer of no projects, no sound of hammers, no trees falling in the woods. This was the day my father coughed up blood.

Seeing the blood in the palm of his hand, he knew he had lung cancer. He didn’t associate it with the mole on his chest, which had been removed five years ago. He assumed this was bronchogenic carcinoma. He had never quit smoking. All the medical evidence—he had ignored it. And all our pleas. Here was a colossal mistake that he could have avoided. And he was furious with himself. His rage was rising on the drive back to New Haven, it needed only a small injustice to erupt.

His brother Joe came to New Haven immediately. Lying in a bed at Yale–New Haven Hospital, my father told him that before we left the farm he stood by our station wagon, staring across the valley, and thought, “You have two years, Clint. And probably two bad years.” Neither of them had any idea what a gift two years would have been.

A bronchoscopy revealed a single tumor in the upper lobe of his right lung. It was melanoma. His cancer was not caused by smoking. Surgery was scheduled. Joe joined my father and my mother for a meeting with the thoracic surgeon. As they sat around his bed, waiting for the conversation to start, this was the question they hoped surgery would answer: Is this tumor the only place where the melanoma spread, or is there reason to think it spread to other places in his body? In particular, they wanted to know whether it had spread to his lymph nodes, because the lymph system is a thruway for metastasis.

The thoracic surgeon explained what would happen during the surgery and what to expect afterward. The meeting was simple and straightforward until the end, when he told them that he did not want to be questioned about the precise pathological findings. If they asked whether he had cut out all the cancer or whether it had spread, he would not answer them.

“What?” my father demanded. “We won’t see the pathology report?”

“No. I’m afraid not.”

My father’s decision was immediate. “Then cancel the operation. If there is any question about my wife and I having access to all the information, we will find another surgeon.”

Surprised, the surgeon became suddenly conciliatory. He didn’t realize they felt this strongly. He promised to share all the findings, including the pathology report, after the surgery.

“So we will proceed on that basis?” my father confirmed. “On the basis of full disclosure?”

“Yes,” he agreed. “We will.”

Surgery answered their question. Melanoma had spread to his lymph nodes. There was no chance now that the cancer was confined to this one tumor or even to his lungs. There was every chance that it was spreading to other parts of his body. But my parents never heard the answer. The surgeon never shared the pathology report. They kept asking for it, but it never came.

That was September. He had his first seizure in November, six weeks after surgery, when he dropped that beam of red cherry. He went back to the thoracic surgeon. They sat down facing each other.

“In the course of becoming a psychoanalyst,” my father explained, “I have come to know myself fairly well. I know what I need. And I need to be fully informed of my condition.”

Then he asked him whether the cancer had spread to his lymph nodes. And the surgeon lied.

“So there was no lymph node involvement?” my father asked.

“I swear,” the man said, raising his right hand. “I swear to you that there was no lymph node involvement.”

Many of the doctors caring for my father were friends, or friends of friends, or members of the same pool and tennis club. The general surgeon who removed the original mole, five years before, was a friend. He had a son my age and a daughter my sister Mandy’s age. Finished with the thoracic surgeon, my father went to speak with him. Richard had been following his case. He knew about the lymph node involvement, and he knew my father hadn’t been told. But he didn’t tell him either. Instead, he elaborated on the original omission. The seizure might not indicate brain metastasis. It could have been caused by a clot from the surgical site in his lungs, which broke loose and lodged in his motor cortex. In fact, that seemed more likely. Yes, that was his preferred explanation. And he advised against chemotherapy or radiation—because there might not be cancer there at all.

“What is wrong with me,” my father wondered to Joe, “that I can’t trust my doctors? I guess I am like our father.”

They both laughed. Their father had trusted no one and doctors least of all.

Anger was how their father reacted to disappointment, defeat, and death. And this trait passed down to every one of his sons. My father worried that his doubts were a symptom of the same kind of rage he felt at the gas station, seeking another object. So he tried to believe his doctors. He wanted to believe them. It was so much easier.

Marc still lived on the same block of Everit Street, ten houses down the sidewalk and then across the street. But there wasn’t the same closeness. Their friendship had been changing even before my father fell sick. “Your father,” he told me, “was an unusual guy. He was a wonderful, unusual guy. And I missed him.” Watching the course of his illness from down the street, Marc cared intensely, but they no longer had anything like the conversations my father had with Joe. He didn’t know about my father’s struggle to stay informed or his recent conversation with the general surgeon. When he heard about the first seizure, it seemed obvious that melanoma had metastasized to his brain. So he walked solemnly down the street to speak with my parents. Yet they didn’t seem concerned.

Confused by their reaction, Marc went home and called the general surgeon himself. “I get the impression,” he said, “that you haven’t told Clint and Shirley about the severity of this.”

“No,” Richard replied, “I haven’t. They can’t take it.”

“I know them pretty well,” Marc said. “They want to be told. And I think they can take it.”

“Based on what I know, neither you nor I should tell them anything.”

Marc started to argue.

“Dr. Schwartz,” he said, “I forbid you from telling them.”

Even a doctor hesitated to interfere in the doctor-patient relationship, even a doctor who was also a close friend, and in those days surgeons claimed a certain final authority. So when the other seizures started to come, when I called Marc from the house that Saturday and he ran down the street, he knew what was happening. But he felt he couldn’t tell my father.

The additional seizures laid bare the truth. My father changed doctors. Even the new doctor resisted telling him. But he eventually told my mother, expecting her to do it. She refused. Her husband would expect to hear news like this directly from his physician. And so my father finally heard the truth. It was December when he began radiation and chemotherapy. I remember the pill bottles multiplying on his dresser as Christmas approached.

Now he knew. And there was the anger. He felt betrayed by his doctors and humiliated by the lies, particularly the story about the clot from his lung surgery. Did everyone know but him and his wife? He felt reasonably certain that his anger about being misinformed was in fact anger about being misinformed—and not anger about illness and death. But it was anger about illness and death. Of course it was.

Then he realized that Marc knew. His rage and disappointment hung over their friendship for the remaining months of his life and the decades that followed. But behind Marc’s guilt and regret lay a certain bewilderment, which he shared with me over lunch perhaps fifteen years later, still haunted by their misunderstanding. After the very first seizure, Marc had drawn the right conclusion—from down the street, with little direct information. My father was also a physician. My mother came from a family of physicians. Why hadn’t they drawn the same conclusion, whatever their surgeons told them? Maybe they didn’t want to know. Maybe they weren’t ready to know. This all happened in such a short span of weeks.

Chemotherapy and radiation would not have changed the course of his disease. This is why his surgeons would not tell him. There was no amount of hope. Silence, they believed, was more humane, like letting someone slumber unawares. But what my father lost was the ability to plan. “The work of dying,” Joe later wrote, “is the work of mourning.” He couldn’t start this work before he knew he was dying. And once started, the work took more time than he had.