First Person
Staying Alive
In 1997 I learned I had cancer—and that it had been trying to kill me for at least four years. The doctors can’t figure out why I’m not dead already.
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Although raised in a devout Lutheran household, I had never really gotten the hang of prayer. During the two weeks before my surgery, however, I became something of a pro. I also took long walks around Town Lake, watching the birds and thinking about nature. I read a book called Getting Well Again that had a lot of great ideas in it. I consulted friends who were cancer survivors. Lois, a consummate organizer and get-things-done person, dropped everything and devoted almost all her time and energy to making sure we were on the right track.
Bit by bit, I began to snap out of my doomster state and start fighting. I began to see the surgery as a bridge that had to be crossed. I imagined a great span over a yawning, forbidding chasm that symbolized all the frightening unknowns of the surgery, recovery, and post-operative treatment. A scary journey, to be sure, but something with a beginning and an end. Visualizing my ordeal in those terms helped me get over my fears and think about moving on—think that I would indeed have a future. Then again, maybe it’s just the fact that I’m a writer, and writers like metaphors.
They rolled me into an operating room at Seton Medical Center the morning of December 2, 1997, and rolled me out twelve and a half hours later. I remember waking up in surgical intensive care, on a respirator. It felt like a couple of fire hoses had been shoved down my throat. You’d think that breathing on a respirator would be effortless, but I found it to be hard work. I felt as if I were drowning. My mouth and throat kept filling up with mucus and blood.
On day three I was moved to a small room in intermediate care. I was still pretty out of it, and it wasn’t until they were wheeling me to yet another room that a Monet print hanging opposite the bed caught my eye. With my still-blurry vision it was hard to make out what it was supposed to be. As the image came slowly into focus, I laughed weakly to myself. It was a picture of a bridge, but instead of being the massive metaphorical span of my imagination, it was just a small ornamental arch over a pond in a woodsy setting.
I had crossed a bridge, all right, but only a little one. There would be many more to come.
On day five I got up the nerve to look in the mirror. The right side of my neck was held together with about a hundred suture staples, forming a branching zipper pattern from behind my earlobe to my collarbone. All the nurses who saw it said that Dr. Lewis had done a great job; the scar would probably hardly show at all. I took their word for it. At least I wasn’t the monster of my worst nightmares. I had crossed that particular bridge. After six days they let me go home. That was nice. I was different but our house was the same. Our cats were the same. Dashiell was growing bigger and smarter every day, and I didn’t want to miss another minute of being his dad.
Bright and early on the first Monday of 1998, I started radiation and chemotherapy, which could possibly be God’s way of giving people a preview of hell, in case they’ve been having trouble making up their mind about where they’d like to go after this life. The night after my first dose, I vomited half a dozen times. It took only a couple hundred more times over the next few months before I finally got it right. I tried every remedy available, from prescription drugs that cost $700 for a three-week supply to marijuana—neither of which my insurance would pay for. Nothing helped. By the beginning of the third week, other side effects started to kick in as well—too many to list, too bizarre and insidious to accurately describe. Their cumulative effect can best be summed up by the old axiom about this treatment: At first you’re afraid you’re gonna die, then you start to worry that you might not.
Chemotherapy and radiation proved to be a far longer and more difficult bridge to cross than the surgery had been. But somehow, with the help of the medicos and my family, friends, and pets, I got through it and managed to maintain a fairly good attitude. It took so much of my strength just to get out of bed every day and do basic maintenance on my body that I had no energy left for weeping and feeling sorry for myself.
One key component of my program for survival was making a list of goals that I wanted to achieve in the next twelve months. The list included making a pilgrimage to the Grand Canyon in six months and certain specific physical and creative accomplishments. One of my top goals was to start playing music again. I didn’t necessarily want to start a new band and pursue music as a lifestyle; I just wanted to have fun playing loud rock and roll with my friends again.
And six months and three weeks after my surgery, there I was, playing real rock and roll real loud at the Continental Club, the best rock and roll joint in the “Live Music Capital of the World.” I had played there what seemed like a million times in another lifetime, but now that seemed almost like yesterday.
Six days earlier I’d marked my forty-fourth birthday. The radiation was done, but I had two more months of chemotherapy to go. Although the radiation had blasted away my sideburns, I still had the mop on top. That’s right: After six months of being a walking toxic-waste dump, I still had a full head of hair—slicked back, with the front locks angling down into my eyes just so. My friend the blues singer Lou Ann Barton always used to say I had “that good fallin’ hair.” When I couldn’t eat a thing, she brought me her homemade potato soup, and it was good. Thank God I didn’t lose my good fallin’ hair.
Now it’s the winter of 1999. My weight is back up to 160, and my cancer appears to be in remission. When I saw Dr. Lewis for my eighteen-month checkup, I explained that I was writing a book about my experience with the big C, and asked if she’d mind looking over a page of my research notes. I asked her if the 9 percent figure for five-year survival in patients with stage four oral SCC was correct.
I half-expected her to say that those statistics didn’t quite apply to my case. After all, it was a unique case, and the study I was citing was more than thirty years old. Surely my chances were actually somewhat better than 9 percent.
“Actually, you’re barking up the wrong tree here,” she said. “Cancer of the tonsil falls into the category of what we call oropharyngeal cancer”—cancer of the part of the pharynx that is continuous with the mouth. “It has some different characteristics from the cancers cited in this particular study.”
“And the survival rates,” I said. “They’re higher?”
“No, they’re actually lower.”
Talk about hard to swallow. I had been under the impression that my chances were a dismal 9 percent. That means that out of 100 people, 91 will die. I could deal with that. But less than 9 percent—wow, that sounded to me like 100 people in a bus going over a cliff.
I had a couple of bad days, almost as bad as the first couple of days after that phone call from Dr. Lewis. But gradually I steered my mental stylus back into the groove of life. I’ve never been an average guy, so I’m not about to worry myself to death about average medical statistics. With Lois’ help, I finally decided that this less-than-9-percent thing is just another small bridge we have to cross. No big deal. Every day is a gift. Now that those days have added up to two years, Dr. Lewis tells me, we can breathe a sigh of relief. When they add up to five years, and I’m sure they will, we can let out a much bigger sigh of relief.
So mark your calendar for December 2, 2002. There’ll be a wild jam session at the Continental Club that night. Be sure to wear your dancing shoes and take your earplugs, ’cause it’s gonna be loud. And if you’ve got that good fallin’ hair, let it fall, man, let it fall.
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