Abstract
“I am a monster, you know.”
He was divorced and alone, an ex-wife long gone. There were no children or siblings, and both of his parents had died during the past eight years, one of cancer, the other of a “broken heart.” I was consulted to advise the medical team on management of symptoms, and to help arrange inpatient hospice.
When I entered the room, he was in bed, his eyes closed and his head propped up on a pillow. On the left side of his neck, an angry red scar traced the path of a surgeon's scalpel, the remnant of a radical neck dissection. A tracheostomy gurgled with thick secretions, and a feeding tube dangled from his belly. A pain pump flashing MORPHINE was attached to his right arm by a sinewy catheter. The room was filled with the smell of sweat and disease. It was the picture of head and neck cancer.
A framed photo of a tanned, athletic man sat on the bedside table, next to a legal pad and pen, the latter the voice of a voiceless man. His eyes opened as I shut the door. I introduced myself and told him why I was there. He grabbed the pad and pen and extended his hand to greet me. I looked at the photo again, and he began to scribble.
“That's me, I was a jock, played football, hunted. A ladies man too, I could have any woman I wanted,” he wrote.
“You were, and are, a good looking man,” I said. And I meant it. His facial bones were sculpted, he was tan, and his hair was full and black—in spite of cancer.
He scribbled again. “No I'm not, don't bullshit me, I'm ugly, I'm disfigured, I'm a monster.”
This was clearly going to take some time, so I sat down, and we talked for almost two hours—a little about his cancer and a little about hospice, but mostly about physical appearances and the true value of a man. But he was having none of my holier-than-thou discourse, and to be honest, had I been lying in his bed, I would have probably been as skeptical as he was.
“Doctor, you don't understand. I hear people complain about a tiny cut on their finger.” He stopped writing, thinking what to say next. Then he wrote again.
“Or a bad hair day. Or gaining 10 pounds. I'm ugly, I lost part of my neck, a tube hangs from my gut like a pathetic penis, and this trach, it drips all the time—if I saw me in a restaurant, I couldn't eat. It's sickening.”
As I tried to convince him otherwise, I could not deny that he was right, or at least partly right. How often had I complained that my hair wouldn't lie right, or I had a pimple that ruined my day, or I hated the wrinkles that notched my face with the decades of life. Regrettably, it's how we frequently feel about ourselves, the physical overwhelming the nonphysical, the internal paling to the external, and unfortunately, it's how society often looks at us.
“Doctor, I'm dying. I hope that when I do, my body will be normal again. I am told in heaven our bodies are perfect. There's no bartering with God, I know that, and I did some things wrong, but I have asked for forgiveness, and I'm ready. People are tired of looking at me, I'm hideous. And I'm tired too.”
I asked if he was depressed. He quickly scribbled: “Wouldn't you be?”
He was on an antidepressant, and Psychiatry had consulted on him a week earlier. They felt he was suffering from existential distress and anticipatory grief, but that his responses were appropriate for someone facing the end of his life. In addition, a therapist had been seeing him for several months, trying to help him adjust to the inevitable. However, while the responses may have been appropriate, there was no allaying the distress over his disfigured body, try as I may.
“Stop doctor,” he wrote. “It's okay, really.” But it wasn't okay, at least not to him, no matter what he said.
The oncologist felt he had months to live, but I wasn't so sure. Besides, I wondered if he could live several more months with an appearance that haunted him every day. We were where we were, and to me, we were waiting at death's doorstep.
We both sat quietly. I waited for him to write, and he waited for me to speak. The stillness was uncomfortable. Finally, he broke the silence and wrote. “I'm ready for hospice. Stop the tube feeding, it just runs out my trach anyway, and all I'm doing is feeding the cancer. I heard about inpatient hospice, that‘s what I want.”
His resistance had been swept away, his body a tormented reservoir of emotional and physical pain. He had surrendered, and was ready to die. I told him I would have the hospice nurse come and speak with him, and if she agreed, we would admit him to inpatient hospice.
He looked down, then scribbled some more.
“I want you to know I was a real person, someone valued, someone who contributed to society, someone who could turn a woman's eyes.”
He had no solid ground on which to stand, and his life was now a free fall with all control gone. His self-worth was lacerated, his physical appearance overwhelming his inner strength.
“Sick or well, you are a real person, you are someone valued, and you still contribute to society. You are now as you were then, except for your cancer. I feel honored you have allowed me into your life at this time.” My words were sincere.
“Thanks doctor, but you're lying. I'm disfigured, I'm the Hunchback of Notre Dame. Could you sit in here with me and eat dinner? Without getting sick to your stomach?”
“Yes I could,” I answered.
Just then he coughed, expelling a stringy glob of thick brown phlegm from his tracheostomy. He wiped it with a Kleenex, and laid it on the bed. I couldn't help but stare at it, and wondered whether I could really eat dinner with thick secretions oozing from his tracheostomy. I felt fraudulent and ashamed of my thoughts.
Then he pushed the button on his pain pump, sat there for a minute, and wrote some more.
“Did you ever play football? High school? College?”
“No I didn't,” I said.
“Too bad,” he wrote. “X's and O's make things simpler. You know what to expect. You have a plan.”
He paused, looked off for a second, and then scribbled some more. “There is no plan with cancer. No X's and O's. Cancer doesn't allow it.”
Soon, his eyelids began to droop. The morphine was doing its job—he was drifting off into a soporific, drug-induced respite from his withering body. But he scribbled one final note before falling into a deep slumber.
I sat and watched him for a minute, and as the pad slipped from his sleeping hands, I picked it up and read what he had written.
“It's late in the fourth quarter, and there is no overtime. Please call the game.”