When Cancer Pain Is More Than Pain

April 9, 2002

The morning the pancake fell to the floor and I hit the ceiling, the spatula was launched as a missile, glancing off the kitchen window and demonstrating once again that my anger can fly out of control at petty annoyance.

Decades of battling multiple sclerosis had failed to produce the fail-safe system to short-circuit high emotion. Flawed eyes and faulty limbs had conspired on this day, and combustion was spontaneous. The fire can be contained, but the spark does not die.

M.S. has become a known quantity, and my equanimity usually remains intact. The kids try to ignore the occasional eruptions, and the family seems to judge itself happy. There are the predictable battles of three children sharing two parents and the one objective of disrupting the peace whenever possible. But the calm was shattered for real when cancer came calling, joining M.S. as the predators loose in the house.

Life changed even more when Dad returned shortly after Thanksgiving Day more than a year ago, after his second prizefight with colon cancer. The old man was knocked around badly, and he was bruised and bloody when he came back from the hospital. I was in pain and decorated with a bag on my belly. The chill of late autumn had moved indoors.

Gray skies broke out each morning. Bringing the emotion home from the wars was a stealth operation. The anger swept in beneath the radar and crawled into bed under the cover of my darkness. My life was not supposed to have gone this way, and fear for the future was burning me up.

Cancer and M.S. had not been good companions. My colon was reacting strangely to surgery, possibly related to my autoimmune problems. The trauma of the operation had jump-started the multiple sclerosis. I could barely stand or walk. My legs were swollen to watermelon proportions. And I had to contend with the bag for three months. I thought that I was calm. Right.

My head was down, and I was not seeing the people around me. I had assumed that the children would rejoice in my presence. They shrank in horror. My fangs were bared, and they were sharp.

“Do your homework, turn off the music!” I snarled. “Clean up that mess! Don’t leave it for your mother and me.”

I sat sullenly and stared, checking my watch in the evening so I could order them to bed at precisely the appointed hour.

I was trapped in my own despair, uncomfortable and uncertain that I would mend. Self-absorption became a byproduct of illness. Bringing the furies to heal was impossible, because their presence went unnoticed. My oblivion was complete, my psychotic behavior obvious to all but me. Deep inside, I hid, cut off from family and friends. I left the cave only when summoned.

Finally, my wife had enough and sat me down. “You are becoming a monster,” she warned, kindly adjusting her remarks to the present tense.

My stare was blank. My emotional equilibrium is fine, I thought. What is she talking about?

Neither the warning nor the fact that my children walked around me dented the armor. When the ileostomy was reversed, my rectum, the bottom of the colon, kept closing, and the painful problems multiplied. I was now officially impossible to be around.

“Open your eyes, Richard,” my wife pleaded. “Don’t do this to your children. You are not in this alone.”

I knew she was right. The beast had me by the neck. Escape was not easy. Anger is hard to legislate. The fires keep burning, the flames rising up regularly. Getting a grip became a long haul.

I decided to talk to the children. We set the event as an interview. “Ben, you are 13,” I said quietly. “You can tell me the truth. Have I been hard to live with?”

Ben smiled suspiciously and sat, just staring at me. “Do you really want the truth?” he asked.

I nodded, and the floodgates opened. “You were really mean,” he began, pleased to unload and picking up steam. “I wanted to scream in your face and kick you. But Mom told me to cut you some slack.”

The smile on my face was gone. These were sobering statements. Gabe saw my blood flowing under the door and came in with his two cents. “It sounded like you really hate us,” he said.

Lily, my daughter, wagged her finger in silence.

Pure pain had been dumped at my feet. Words would not come. A changed landscape would require more than words, anyway. The epiphany hit hard. I had been so self-absorbed, and there was a lot more to think about than me. The patients do not lie alone in hospital beds. Our families are next to us, whether we see them or not.

The infection I brought home is under control, though the fever is not gone. Work around the house has taken on new meaning.

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