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.