She was glad we’d spoken, nonetheless, and so was I. Because the day after her discharge from the hospital, she started vomiting again. The blockage was back. She was readmitted. We put the tube back in.
With a night of fluids and rest, the symptoms once again subsided without need for surgery. But this second episode jolted her because we’d spoken about the meaning of a blockage, that it was her tumor closing in. She saw the connections between events of the previous couple of months, and we talked about the mounting series of crises she’d experienced: the third round of chemotherapy after the previous one had failed, the bad side effects, the pulmonary embolism with its terrible shortness of breath, the bowel obstruction after that, and its almost immediate return. She was starting to grasp that this is what the closing phase of a modern life often looks like—a mounting series of crises from which medicine can offer only brief and temporary rescue. She was experiencing what I have come to think of as the ODTAA syndrome: the syndrome of One Damn Thing After Another. It does not have a totally predictable path. The pauses between crises can vary. But after a certain point, the direction of travel becomes clear.
Douglass did make that trip to Florida. She put her feet in the sand and walked with her husband and saw friends and ate the no-raw-fruits-or-vegetables diet I’d advised her to eat to minimize the chance a fibrous leaf of lettuce got jammed trying to make it through her intestine. Toward the end of the time, she had a fright. She developed bloating after a meal and returned home to Massachusetts a couple days early, worried that the bowel obstruction was back. But the symptoms subsided, and she made a decision. She was going to take a break from her chemotherapy, at least for now. She didn’t want to plan her life around the infusions of chemotherapy and the nausea and the painful rashes and the hours of the day she’d spend in bed with fatigue. She wanted to be a wife/mother/neighbor/friend again. She decided, like my father, to take what time would give her, however long that might be.
* * *
ONLY NOW DID I begin to recognize how understanding the finitude of one’s time could be a gift. After my father was given his diagnosis, he’d initially continued daily life as he always had—his clinical work, his charity projects, his thrice-weekly tennis games—but the sudden knowledge of the fragility of his life narrowed his focus and altered his desires, just as Laura Carstensen’s research on perspective suggested it would. It made him visit with his grandchildren more often, put in an extra trip to see his family in India, and tamp down new ventures. He talked about his will with my sister and me and about his plans for sustaining beyond him the college he’d built near his village. One’s sense of time can change, though. As the months passed without his symptoms worsening, my father’s fear of the future softened. His horizon of time began to lift—it might be years before anything concerning happened, we all thought—and as it did, his ambitions returned. He launched a new construction project for the college in India. He ran for district governor of Rotary for southern Ohio, a position that wouldn’t even start for another year, and won the office.
Then, in early 2009, two and a half years after his diagnosis, his symptoms began to change. He developed trouble with his right hand. It started with the tingling and numbness in the tips of his fingers. His grip strength gave out. On the tennis court, the racket began flying out of his hand. He dropped drinking glasses. At work, tying knots and handling catheters grew difficult. With both limbs now developing signs of paralysis, it seemed like he’d come to his line in the sand.
We talked. Wasn’t it time for him to stop practicing surgery? And wasn’t it time to see Dr. Benzel about surgery for himself?
No, he said. He wasn’t ready for either. A few weeks later, however, he announced that he would retire from surgery. As for the spinal operation, he still feared he’d lose more than he’d gain.
After his retirement party that June, I braced for the worst. Surgery had been his calling. It had defined his purpose and meaning in life—his loyalties. He’d wanted to be a doctor since the age of ten, when he saw his young mother die from malaria. So now what was this man going to do with himself?
We witnessed an altogether unexpected transformation. He threw himself into his work as Rotary district governor, whose term of office had just started. He absorbed himself so totally that he changed his e-mail signature from “Atmaram Gawande, M.D.” to “Atmaram Gawande, D.G.” Somehow, instead of holding on to the lifelong identity that was slipping away from him, he managed to redefine it. He moved his line in the sand. This is what it means to have autonomy—you may not control life’s circumstances, but getting to be the author of your life means getting to control what you do with them.
The job of district governor meant spending the year developing the community service work of all the Rotary Clubs in the region. So my father set a goal of speaking at the meetings of each of his district’s fifty-nine clubs—twice—and took to the road with my mother. Over the next several months, they crisscrossed a district ten thousand square miles in size. He always did the driving—he could still do that without trouble. They liked to stop at Wendy’s for the chicken sandwiches. And he tried to meet as many of the district’s thirty-seven hundred Rotarians as he could.
By the following spring, he was completing his second circuit through the district. But the weakness in his left arm had progressed. He couldn’t lift it above sixty degrees. His right hand was losing strength, too. And he was starting to have trouble walking. Up until this point, he’d managed to persist with playing tennis but now, to his great dismay, he had to give it up.
“There’s a heaviness in my legs,” he said. “I’m afraid, Atul.”
He and my mother came to visit in Boston. On a Saturday night, the three of us sat in the living room, my mother next to him on a couch and me across from them. I distinctly remember the feeling that a crisis was creeping up on us. He was becoming quadriplegic.
“Is it time for surgery?” I asked him.
“I don’t know,” he said. It was time, I realized, for our own hard conversation.
“I’m worried,” I said. I recalled the list of questions Susan Block, the palliative medicine expert, had said mattered most and posed them to my father one by one. I asked him what his understanding was of what was happening to him.
He understood what I understood. He was becoming paralyzed, he said.
What were his fears if that should happen, I asked?
He said he feared that he would become a burden on my mother and that he wouldn’t be able to take care of himself anymore. He couldn’t fathom what his life would become. My mother, tearing, said she would be there for him. She would be happy to take care of him. Already the shift had started. He was having her do more and more of the driving, and she arranged his medical appointments now.
What were his goals if his condition worsened, I asked?
He thought on this for a moment. He wanted to finish his Rotary responsibilities, he decided—he would be finishing his term in mid-June. And he wanted to make sure his college and family in India were going to be all right. He wanted to visit them if he could.
I asked him what trade-offs he was willing to make and not willing to make to try to stop what was happening to him. He wasn’t sure what I meant. I told him about Susan Block’s father, who’d also had a spinal cord tumor. He’d said that if he could still watch football on television and eat chocolate ice cream, that would be good enough for him.
My dad didn’t think that would be good enough for him at all. Being with people and interacting with them was what he cared about most, he said. I tried to understand—so even paralysis would be tolerable as long as he could enjoy people’s company?
“No,” he said. He couldn’t accept a life of complete physical paralysis, of needing total care. He wanted to be capable of not only being with people but also still being in charge of his world and life.
His advancing quadriplegia threatened to take that away soon. It would mean twenty-four-hour nursing care
, then a ventilator and a feeding tube. He didn’t sound like he wanted that, I said.
“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.
Being Mortal: Medicine and What Matters in the End Page 20