by Eric Johnson
My first reaction after hearing my cancer diagnosis was, “I need to figure out a good way to kill myself before I become totally debilitated and worthless.” Another strategy that I considered was to become–by design–a rather nasty, disagreeable person who nobody would miss when I was gone. Sick, I know. This was, I should point out, well before I had been staged; before I had my first, baseline CT scan. I was panicking and jumping to conclusions, but being diagnosed with a deadly disease will do that to a person. Or at least, that’s what it did to me.
The surgeon who performed my fateful colonoscopy said it looked like Stage 2 rectal cancer, which he said carried a 75 percent chance of survival. Radiation and chemo went well, with my rectal tumor seeing a complete response—it was gone after the five-week treatment period. The surgery was quick and successful and when the pathology report came back, there was no evidence of lymph node involvement.
Things were looking good for my case, and I started to feel more positive about my life and prospects for the future. I recovered quickly from the low anterior resection that re-arranged my bowels, and I was getting used to the ileostomy, which was due to be reversed in a couple of months in any event. It was summer and I was busy recovering and taking some tentative rides on my bike, while dreaming about a future involving gardening, cutting firewood and cross country skiing.
My recovery and optimistic attitude was encouraging on one level, but it was overshadowed from time to time by the whole idea of being a cancer patient. I didn’t want to be a cancer patient. I desperately didn’t want to be a cancer patient. The designation didn’t fit my self image at all. I’ve always been a health-conscious guy; a fit vegetarian who rarely saw a doctor and never spent a night in the hospital. Now I felt like a vulnerable loser, hanging around the local cancer center—whether I eventually got cured or not.
Meanwhile, I tried to mentally prepare for a potential upgrade to Stage 4. Hey, it happens. As an active member of the Colon Club online message board, I have many friends who started out with a low number and wound up with advanced stage disease. A good percentage of them have died. That’s how this malady tends to play out for far too many of its victims.
This is not to say that I was moping around and otherwise sweating out a turn for the worse. As far as I was concerned, my odds of living a long life were pretty good. What helped a lot was remaining active—both physically and mentally. I kept working fulltime and pursued my passion for bicycling with a new sense of purpose. When I wasn’t recovering from surgery, I was riding my bike and getting stronger in the process. And when I wasn’t riding my bike, I was gardening and/or cutting next winter’s firewood. I told anyone who would listen, “I’m too busy to get sick or die.”
And then, like a nightmare or the plot of some television soap opera, a 7 mm spot turned up on my right lung in a routine follow-up CT scan some 15 months after my original diagnosis. The radiologist checked my previous scan, and discovered a 5 mm spot in the same location that had been missed. Since it had grown in the interim, it was pretty suspect. Unfortunately, it took the better part of that summer, and numerous tests, including a needle biopsy and partially collapsed lung, to positively identify this spot as a metastasis–a malignant tumor. I had suffered mentally the whole summer, waiting on a final verdict. At times, it became nearly unbearable. I tried to clear my mind with exercise and work, and both provided significant—but temporary—relief.
Now, realizing that my odds of survival had been reduced to near zero, I knew I’d had enough. “I can’t live like this,” I told myself with a mixture of despair and defiance. “I can’t continue to live in an atmosphere of fear and dread.”
A friend of mine at the Colon Club, who has since died from her disease, put it plainly. “You have to develop coping skills,” she explained. “You have to come to terms with your new reality.” I was intrigued—inspired. Coping skills, eh? You mean I can learn to build a decent life around this tragedy? What an interesting challenge.
I’ve never been one of those people who believes I’ll be cured somehow, against all odds. I have no religious convictions. (Heck, I’ve never even been indicted). But that doesn’t mean I can’t be optimistic about my future, however long that happens to be. I can look forward to this afternoon’s bike ride. I can cut enough firewood to heat the house next winter, just in case I’m around to see it—and take great pleasure in doing so. And if I’m not around to enjoy the fruits of my labor, someone else will be. I can gain satisfaction from the small things in life—and the big ones. It boils down to attitude. It boils down to living the life I want to live.
I mentioned this idea to my local oncologist, who rarely said much, none of which was ever profound. “If you spend the rest of your life worrying about cancer,” he unexpectedly pointed out, “you’ll be wasting the rest of your life.” I was impressed by that logic, and remain so. As a result, I started to make longer-term plans for my life. Why not?
Still, lingering doubts remained. Concerned about the wisdom of someone in my position taking such a bold approach, I sought a second opinion from my oncologist at Sloan-Kettering in New York City, who has a well-earned reputation for no-nonsense, give-it-to-you-straight counsel. “Doc,” I said, “I’m making longterm plans. Does that make any sense?” She responded, in her typical, curt way, “That’s the only thing that makes any sense.”
I pondered both these statements and incorporated their wisdom into a motto and strategy that continues to guide my thoughts and actions: “Live your life like it’s going to be a long one, because it just might, and then you’ll be glad you did.” This approach has allowed me to take on new, professional responsibilities and pursue opportunities that have been rewarding, both financially and professionally. They’ve helped me recognize the value of my continued existence. Cancer or no cancer, self-validation is a wonderful thing.
My plan is to retire from my current job in five years, when I’m 60, and return to manage the family tree farm in Wisconsin and live out the rest of my days doing what I’ve always wanted to do.
Statistically speaking, this is unlikely to happen. I have active, multiple-recurrent disease, am currently on chemo and in all likelihood, I’ll run out of treatment options at some point, and succumb to the disease. On the other hand, I’m exactly five years out from a Stage 4 diagnosis which is, in and of itself, highly unlikely. So, who knows? I certainly don’t, and I don’t spend a lot of time worrying about it. I’m going with what’s worked so well so far, and hoping for the best. I remain a happy, optimistic individual—something I never imagined after hearing those terrifying words, “You have cancer.”
Eric Johnson is a writer and magazine editor who currently lives in Upstate New York. As of this writing, he is five days away from his five-year anniversary of being diagnosed, and 39 miles away from 10,000 miles logged on his bicycle since that date.