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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THE CONTINENTAL CLUB in Austin was packed and the music was loud and it looked like people were having a good time. It was around midnight on Thursday, May 21, 1998. I was playing my black Fender P-Bass Deluxe and singing my heart out, and it felt good.
We were making a hell of a racket for just three guys, but people had always said that about us. The drummer, David Green, was pounding out a rock-steady groove, and Jon Dee Graham, my old pal from way back, was ripping monster chunks of sound out of a gold Fender Stratocaster. There I was, tall, pale, and paper-thin, dressed in black from head to toe, my hair falling in my eyes just so.
I must have looked like a shadowy character from one of the hard-boiled detective novels I wrote a few years ago. I’m sure some people thought I was a junkie, shuffling through the night from riff to riff, fix to fix. But the gorilla on my back wasn’t the big H. It was the big C. Cancer of the tonsil, to be exact.
At the time, I was not only battling the disease itself but trying to survive a triple whammy of surgery, radiation, and chemotherapy. One of the most obvious complications was my drastic weight loss. I’m six foot three, and at my former weight of 175 pounds I had always passed for thin. Now, because eating was hell and vomiting was easy, I was down to 130 and losing more every day.
Among the zillions of side effects and complications of my ordeal, my scarred and irradiated vocal apparatus was missing about half an octave on the high end, and even my good notes were rough sounding. After all these years I finally had the kind of semi-gravelly voice that suited the way I felt deep down inside: a white guy who did indeed have a right to sing the blues.
There was some weirdness to my bass playing too. One of the chemotherapy’s side effects was neuropathy, a fancy medical term for nerve malfunction. Specifically, my fingers and hands were numb and tingly, which made playing bass tricky. Also, in my left leg, I’d lost the function of the femoral nerve, which controls a muscle that comes in handy for walking, dancing, and various sudden moves. But I’d always been one of those too-cool-to-dance guys, anyway. Somehow, I got through the night without playing more than a couple of bad notes and never once falling down.
The room was crowded with local musicians and true-blue aficionados of the music scene. The gig was a benefit in the guise of a Rolling Stones tribute. The beneficiary was the SIMS Foundation, which provides counseling and other services for troubled musicians—a worthy cause indeed.
A dozen other bands were on the bill, and every one of them rose to the occasion to put on a good show. In our case, the audience was getting a little something extra: a mini-reunion of what had been, back in the late seventies and early eighties, one of Austin’s most popular rock and roll bands, the Skunks. It was remarkably cool that after all that time, Jon Dee and I still played exceedingly well together.
Normally, rocking down memory lane isn’t my thing, but in the previous six months, my whole world had turned upside down, and playing this gig was like looking in the mirror and checking my pulse to make sure I was still alive, still me, after all I’d been through.
It all started on Wednesday, November 19, 1997, with a phone call from Dr. Melba Lewis. Dr. Lewis’ full title is “otolaryngologist—head and neck surgeon,” and I’d been seeing her because of a recurrent lump in my neck, just under my right jaw. That afternoon, Dr. Lewis called to tell me that the lab results from the biopsy she had performed the previous day confirmed that I had cancer. This is life-threatening, she said. She spoke slowly and in measured tones, giving the reality time to seep in. I had a type of head and neck cancer known as squamous cell carcinoma, or SCC. It’s a nasty enough type of cancer under the best of circumstances, but I had a tumor more than two centimeters in diameter (that lump under my right jaw) and several smaller ones around it. The cancer was also present in one tonsil, the lymph glands, and various other places in my neck.
SCC is the kind of cancer that most commonly develops in the oral cavity of older men who are very heavy drinkers and chain smokers. For the previous ten years, I had smoked two cigars a day and had an average of two scotches a night. It wasn’t exactly a risk-free lifestyle, but according to Dr. Lewis I didn’t fit the profile for this disease, either. Probably the most alarming thing about my cancer was the fact that I had had it for at least four years.
In January 1994, just before moving back to Austin from L.A., I’d had a tumor removed from the exact same place in my neck. After the operation, my doctor had told me not to worry: The pathologists said it was benign. Not cancer.
After Dr. Lewis made her initial diagnosis, she arranged for the L.A. lab to send samples of that original tumor (which had been frozen and kept on file) to be tested in Austin. Oops! The Austin pathologists found squamous cell carcinoma in the samples. The results were double- and triple-checked. SCC had been trying to kill me for at least four years.
The cancer docs rate the severity of the disease in stages ranging from one to four, with stage four being the most serious. Mine was stage four. I did some research on the Internet and found a site called Oral Pathology, which offered all sorts of grim data about SCC. “Squamous cell carcinoma,” the text noted, “is a common oral epithelial malignancy that all too frequently leads to mutilative surgery and death.” A study conducted in 1968 showed that the overall five-year survival rate for all stages of oral SCC was under 50 percent. The five-year survival rate for a patient in stage four of the disease was 9 percent.
News of my case spread like wildfire in the otolaryngology community. A new doctor would enter the examination room, shut the door, extend his or her hand, and say, “Hello, Jesse. My name is Dr. —.”
“Nice to meet you,” I’d say.
“You’re famous,” he or she would say, glancing at my chart.
“Oh, well, a few years ago I had this band called the Skunks, and I write crime novels and—”
“No, what I mean is we’ve all heard of your case. You have a highly unusual case of cancer.”
“Normally a person with this type and stage of cancer wouldn’t be alive after four years.”
I met a lot of doctors, and the same scenario was repeated time and time again. Nothing makes your day quite like being told you ought to be dead already.
I was very worried about dying. I didn’t want to leave my wonderful wife, Lois, and our handsome, brilliant four-year-old son, Dashiell. I was even more worried that the surgery would turn me into a monster. I knew I had to have two procedures: an extended tonsillectomy and a right radical neck dissection. Besides removing my right tonsil and the surrounding tissue from my soft palate, Dr. Lewis would make several incisions on the right side of my neck, where she would remove the tumors, the jugular vein, and the lymph glands, along with some muscle and nerves.
But would it really stop there? What about my voice box, my tongue? What if the cancer had spread much more than she thought? She might have to keep on cutting, cruelly extending my life for a few years but transforming me into some kind of Frankenstein’s monster. Maybe I would live out my days as the ugly secret lurking behind the drawn curtains of the Sublett house. Dashiell’s friends at school would shun and tease him, the kid with the monster dad.
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.