Spinal cord tumors are rare, and few neurosurgeons have much experience with them. A dozen cases is a lot. Among the most experienced neurosurgeons was one at the Cleveland Clinic, which was two hundred miles from my parents’ home, and one at my hospital in Boston. We made appointments at both places.
Both surgeons offered surgery. They would open up the spinal cord—I didn’t even know that was possible—and remove as much of the tumor as they could. They’d only be able to remove part of it, though. The tumor’s primary source of damage was from its growth inside the confined space of the spinal canal—the beast was outgrowing its cage. The expansion of the mass was crushing the spinal cord against the vertebral bone, causing pain as well as destruction of the nerve fibers that make up the cord. So both surgeons proposed also doing a procedure to expand the space for the tumor to grow. They’d decompress the tumor, by opening the back of the spinal column, and stabilize the vertebrae with rods. It’d be like taking the back wall off a tall building and replacing it with columns to hold up the floors.
The neurosurgeon at my hospital advocated operating right away. The situation was dangerous, he told my father. He could become quadriplegic in weeks. No other options existed—chemotherapy and radiation were not nearly as effective in stopping progression as surgery. The operation had risks, he said, but he wasn’t too worried about them. He was more concerned about the tumor. My father needed to act before it was too late.
The neurosurgeon at the Cleveland Clinic painted a more ambiguous picture. While he offered the same operation, he didn’t push to do it right away. He said that while some spinal cord tumors advance rapidly, he’d seen many take years to progress, and they did so in stages, not all at once. He didn’t think my father would go from a numb hand to total paralysis overnight. The question therefore was when to go in, and he believed that should be when the situation became intolerable enough for my father to want to attempt treatment. The surgeon was not as blithe about its risks as the other neurosurgeon. He thought it carried a one in four chance of itself causing quadriplegia or death. My father, he said, would “need to draw a line in the sand.” Were his symptoms already bad enough that he wanted surgery now? Would he want to wait until he started to feel hand symptoms that threatened his ability to do surgery? Would he want to wait until he couldn’t walk?
The information was difficult to take in. How many times had my father given patients bad news like this—that they had prostate cancer, for instance, requiring similarly awful choices to be made. How many times had I done the same? The news, nonetheless, came like a body blow. Neither surgeon came out and said that the tumor was fatal, but neither said the tumor could be removed, either. It could only be “decompressed.”
In theory, a person should make decisions about life and death matters analytically, on the basis of the facts. But the facts were shot through with holes and uncertainties. The tumor was rare. No clear predictions could be made. Making choices required somehow filling the gaps, and what my father filled them with was fear. He feared the tumor and what it would do to him, and he also feared the solution being proposed. He could not fathom opening up the spinal cord. And he found it difficult to put his trust in any operation that he did not understand—that he did not feel capable of doing himself. He asked the surgeons numerous questions about how exactly it would be done. What kind of instrument do you use to enter the spinal cord, he asked? Do you use a microscope? How do you cut through the tumor? How do you cauterize the blood vessels? Couldn’t the cautery damage the nerve fibers of the cord? We use such and such an instrument to control prostate bleeding in urology—wouldn’t it be better to use that? Why not?
The neurosurgeon at my hospital didn’t much like my father’s questions. He was fine answering the first couple. But after that he grew exasperated. He had the air of the renowned professor he was—authoritative, self-certain, and busy with things to do.
Look, he said to my father, the tumor was dangerous. He, the neurosurgeon, had a lot of experience treating such tumors. Indeed, no one had more. The decision for my father was whether he wanted to do something about his tumor. If he did, the neurosurgeon was willing to help. If he didn’t, that was his choice.
When the doctor finished, my father didn’t ask any more questions. But he’d also decided that this man wasn’t going to be his surgeon.
The Cleveland Clinic neurosurgeon, Edward Benzel, exuded no less confidence. But he recognized that my father’s questions came from fear. So he took the time to answer them, even the annoying ones. Along the way, he probed my father, too. He said that it sounded like he was more worried about what the operation might do to him than what the tumor would.