Being Mortal (26 page)

“Never,” he said. “Let me die instead.”

Those questions were among the hardest I’d asked in my life. I posed them with great trepidation, fearing, well, I don’t know what—anger from my father or mother, or depression, or the sense that just by raising such questions I was letting
them down. But what we felt afterward was relief. We felt clarity.

Maybe his answers meant that it
was
time to talk to Benzel about surgery, again, I said. My father softly agreed.

He told Benzel that he was ready for the spinal surgery. He was more afraid now of what the tumor was doing to him than what an operation might do to him. He scheduled the surgery for two months later, after his term of office as district governor ended. By then, his walking had become unsteady. He was having falls and trouble getting up from sitting.

Finally, on June 30, 2010, we arrived at the Cleveland Clinic. My mother, my sister, and I gave him a kiss in a preoperative holding room, adjusted his surgical cap, told him how much we loved him, and left him in the hands of Benzel and his team. The operation was supposed to last all day.

Just two hours into it, however, Benzel came out to the waiting area. He said my father had gone into an abnormal cardiac rhythm. His heart rate sped up to 150 beats a minute. His blood pressure dropped severely. The cardiac monitor showed signs of a potential heart attack, and they halted the operation. With medications, they got him back into a normal rhythm. A cardiologist said his heart rate slowed enough to avoid a full-blown heart attack, but he wasn’t sure what had caused the abnormal rhythm. They expected the medications they’d started to prevent its coming back, but there was uncertainty. The operation was not beyond the point of no return. So Benzel had come out to ask us if he should stop or proceed.

I realized then that my father had already told us what to do, just as Susan Block’s father had. My dad was more afraid of becoming quadriplegic than of dying. I therefore asked Benzel which posed the greater risk of his becoming quadriplegic in the
next couple months: stopping or proceeding? Stopping, he said. We told him to proceed.

He returned seven long hours later. He said my father’s heart had remained stable. After the early trouble, all had gone as well as could be hoped. Benzel had been able to perform the decompression procedure successfully and remove a small amount of the tumor, though not more. The back of my father’s spine was now open from the top to the bottom of his neck, giving the tumor more room to expand. We’d have to see how he woke up, however, to know if any significant damage had been done.

We sat with my father in the ICU. He was unconscious, on a ventilator. An ultrasound of his heart showed no damage—a huge relief. The team therefore lightened up on his sedatives and let him slowly come to. He woke up groggy but able to follow commands. The resident asked him to squeeze the resident’s hands as tightly as he could, to push against him with his feet, to lift his legs off the bed. There was no major loss of motor function, the resident said. When my father heard this, he began gesturing clumsily for our attention. With the breathing tube in his mouth, we couldn’t make out what he was saying. He tried to spell what he wanted to say in the air with his finger. L-I-S …? T-A-P …? Was he in pain? Was he having trouble? My sister went through the alphabet and asked him to lift his finger when she got to the right letter. In this way, she deciphered his message. His message was “HAPPY.”

A day later he was out of the ICU. Two days after that, he left the hospital for three weeks in a Cleveland rehabilitation facility. He returned home on a hot summer day, feeling strong as ever. He could walk. He had little neck pain at all. He thought trading his old pain for a stiff, unbending neck and a month enduring the hardships of recovery had been a more than acceptable
deal. By every measure he’d made the right choices at each step along the way—to put off immediate surgery, to wait even after he’d had to leave his surgical career, to go ahead with the risks only after almost four years, when trouble walking threatened to take away the capabilities he was living for. Soon, he felt, he’d even be able to drive again.

He’d made all the right choices.

THE CHOICES DON
’
T
stop, however. Life is choices, and they are relentless. No sooner have you made one choice than another is upon you.

The results of the tumor biopsy showed my father had an astrocytoma, a relatively slow-growing cancer. After he’d recovered, Benzel referred him to see a radiation oncologist and a neuro-oncologist about the findings. They recommended that he undergo radiation and chemotherapy. This type of tumor cannot be cured, but it can be treated, they said. Treatment could preserve his abilities, perhaps for years, and might even restore some of them. My father was hesitant. He had just recovered and gotten back to his service projects. He was making plans to travel again. He was clear about his priorities, and he was concerned about sacrificing them for yet more treatment. But the specialists pushed him. He had so much to gain from the therapy, they argued, and newer radiation techniques would make the side effects fairly minimal. I pushed him, too. It seemed almost all upside, I said. The primary downside seemed only to be that we had no radiation facility near home capable of providing the treatment. He and my mother would have to move to Cleveland and put their lives on hold for the six weeks of daily radiation treatments. But that was all, I said. He could manage that.

Pressed, he accepted. But how foolish these predictions would turn out to be. Unlike Benzel, the specialists had not been ready to acknowledge how much more uncertain the likelihood of benefit was. Nor had they been ready to take the time to understand my father and what the experience of radiation would be like for him.

At first it seemed like nothing. They’d made a mold of his body for him to lie in so he’d be in the exact same position for each dose of his treatment. He’d lie in the mold for up to an hour, a fishnet mask pulled tight over his face, unable to move two millimeters as the radiation machine clicked and whirred and delivered its daily blast of gamma rays into his brain stem and spinal cord. Over time, however, he experienced stabbing spasms in his back and neck. Each day, the position became harder to endure. The radiation also gradually produced a low-level nausea and a caustic throat pain when he swallowed. With medications, the symptoms became tolerable, but the drugs made him fatigued and constipated. He began sleeping away the day after his treatments, something he’d never done in his life. Then a few weeks into treatment, his sense of taste disappeared. They hadn’t mentioned the possibility, and he felt the loss keenly. He loved food. Now he had to force himself to eat.

By the time he returned home, he’d lost twenty-one pounds total. He had a constant tinnitus, a ringing in his ears. His left arm and hand had a new burning, electrical pain. And as for his sense of taste, the doctors expected it to return soon, but it never did.

Nothing improved, in the end. He lost yet more weight that winter. He fell to just 132 pounds. The left-hand numbness and pain climbed above his elbow instead of reducing as hoped. The numbness in his lower extremities rose above his knees. The ringing in his ears was joined by a sense of vertigo. The left side of his
face began to droop. The neck and back spasms persisted. He had a fall. A physical therapist recommended a walker, but he didn’t want to use it. It felt like failure. The doctors put him on methylphenidate—Ritalin—to try to stimulate his appetite and ketamine, an anesthetic, to control his pain, but the drugs made him hallucinate.

We didn’t understand what was happening. The specialists kept expecting the tumor to shrink and, with it, his symptoms. After his six-month MRI, however, he and my mom called me.

“The tumor is expanding,” he said, his voice quiet and resigned. The radiation hadn’t worked. The images showed that, instead of shrinking, the tumor had kept right on growing, extending upward into his brain, which is why the ringing had persisted and the dizziness had appeared.

I welled with sadness. My mother was angry.

“What was the radiation for?” she asked. “This should have shrunk. They said it would most likely shrink.”

My father decided to change the subject. Suddenly, for the first time in weeks, he did not want to talk about his symptoms of the day or his problems. He wanted to know about his grandchildren—how Hattie’s symphonic band concert had gone that day, how Walker was doing on his ski team, whether Hunter could say hello. His horizons had narrowed once more.

The doctor recommended seeing the oncologist to plan chemotherapy, and a few days later I joined my parents in Cleveland for the appointment. The oncologist was now center stage, but she too lacked Benzel’s ability to take in the whole picture. We missed it keenly. She proceeded in information mode. She laid out eight or nine chemotherapy options in about ten minutes. Average number of syllables per drug: 4.1. It was dizzying. He could take befacizimab, carboplatin, temozolomide, thalidomide, vincristine, vinblastine, or some other options I missed in
my notes. She described a variety of different combinations of the drugs to consider as well. The only thing she did not offer or discuss was doing nothing. She suggested he take a combination of temozolomide and befacizimab. She thought that his likelihood of tumor response—that is, of the tumor’s not growing further—was around 30 percent. She seemed to not want to sound discouraging, though, so she added that for many patients the tumor becomes “like a low-grade chronic illness” that could be watched.

“You could be back on a tennis court this summer, hopefully,” she added.

I couldn’t believe she’d really said that. The notion that he might ever get back on a tennis court was daffy—it was not a remotely realistic hope—and I was spitting mad that she would dangle that in front of my father. I saw his expression as he imagined himself back on a tennis court. But it proved to be one of those moments that his being a physician was a clear benefit. He quickly realized it was just a fantasy and, however reluctantly, he turned away from it. Instead, he asked about what the treatment would do to his life.

“Right now, I am foggy in my head. I have tinnitus. I have radiating arm pains. I have trouble walking. That’s what’s getting me down. Will the drugs make any of this worse?”

She allowed that they could, but it depended on the drug. The discussion became difficult for me or my parents to follow, despite all three of us being doctors. There were too many options, too many risks and benefits to consider with every possible path, and the conversation never got to what he cared about, which was finding a path with the best chance of maintaining a life he’d find worthwhile. She was driving exactly the kind of conversation that I myself tended to have with patients but that I didn’t want to have anymore. She was offering data and asking my
father to make a choice. Did he want the red pill or the blue pill? But the meaning behind the options wasn’t clear at all.

I turned to my mother and father, and said, “Can I ask her about what happens if the tumor progresses?” They nodded. So I did.

The oncologist spoke straightforwardly. His upper extremity weakness would gradually increase, she said. His lower extremity weakness would also advance but respiratory insufficiency—difficulty getting enough oxygen—from the weakness of his chest muscles would become the bigger problem.

Will that feel uncomfortable, my father asked?

No, she said. He’d just grow fatigued and sleepy. But the neck pain and shooting pains would likely increase. He could also develop trouble swallowing as the tumor grew to involve critical nerves.

I asked her what the range of time looked like for people to reach this final point, both with treatment and without.

The question made her squirm. “It’s hard to say,” she said.

I pushed her. “What’s the shortest time you’ve seen and the longest time you’ve seen for people who took no treatment?”

Three months was the shortest, she said, three years the longest.

And with treatment?

She got mumbly. Finally she said that the longest might not have been that much more than three years. But with treatment, the average should shift toward the longer end.

It was a hard and unexpected answer for us. “I didn’t realize,” my father said, his voice trailing off. I remembered what Paul Marcoux, Sara Monopoli’s oncologist, had told me about his patients. “I’m thinking, can I get a pretty good year or two out of this? … They’re thinking ten or twenty years.” We were thinking ten or twenty years, too.

My father decided to take some time to consider his options. She gave him a prescription for a steroid pill that might temporarily slow the tumor’s growth, while having relatively few side effects. That night, my parents and I went out for dinner.

“The way things are going I could be bedridden in a few months,” my father said. The radiation therapy had only made matters worse. Suppose chemotherapy did the same? We needed guidance. He was torn between living the best he could with what he had versus sacrificing the life he had left for a murky chance of time later.

One of the beauties of the old system was that it made these decisions simple. You took the most aggressive treatment available. It wasn’t a decision at all, really, but a default setting. This business of deliberating on your options—of figuring out your priorities and working with a doctor to match your treatment to them—was exhausting and complicated, particularly when you didn’t have an expert ready to help you parse the unknowns and ambiguities. The pressure remains all in one direction, toward doing more, because the only mistake clinicians seem to fear is doing too little. Most have no appreciation that equally terrible mistakes are possible in the other direction—that doing too much could be no less devastating to a person’s life.

My father went home still uncertain what to do. Then he had a series of five or six falls. The numbness in his legs was getting worse. He began losing the sense of where his feet were underneath him. One time, going down, he hit his head hard and had my mother call 911. The EMTs arrived, siren wailing. They put him on a backboard and in a hard collar and raced him to the ER. Even in his own hospital, it was three hours before he could get the X-rays confirming that nothing was broken and that he could sit up and take the collar off. By then, the stiff collar and rock-hard backboard had put him in excruciating pain. He
required multiple injections of morphine to control it and wasn’t released home until near midnight. He told my mother he never wanted to be put through that kind of experience again.