The latest from http://brainblogger.com!
Six-and-a-half years ago I was officially cured of brain cancer — specifically, a glioblastoma multiforme, the most lethal of brain tumors. GBM, as it’s known, has a median survival rate of one to two years.
According to the Journal of Neuroepidemiology, a “population-based cure is thought to occur when a population’s risk of death returns to that of the normal population, and in GBM, that is thought to occur after 10 years.”
Did I jump up and shout hallelujah? Throw a party? No. I’ve met too many people with a GBM who don’t make it past two years. I’ve met too many of their family members whose lives precariously balance on the hope of each new clinical trial, on the outcome of each successive MRI.
There is also this: throughout the years I’ve lived with the diagnosis, I haven’t put much stock in statistics, neither when I got my diagnosis sixteen years ago nor since. Still, my non-reaction got me thinking. How unorthodox was my wilful oblivion? Had it worked for others coping with a serious illness?
Whatever the case, there was also the possibility that I had just gotten lucky: a few inches to the left, and it would have been a different story. Or, as my radiation oncologist maintains, I had a brilliant surgeon, one who, my brother-in-law reported, told my family that he’d never performed a cleaner resection — no mean feat, considering the finger-like tentacles that make a GBM difficult to remove. Maybe the radiation and chemotherapy treatments had stopped the cancer from spreading.
Or maybe, what I did in addition to my treatments — the coping strategies I adopted — are worth sharing. With the caveat that there is no-one-size-fits-all approach to contending with the diagnosis of a serious illness, here are three.
1. Lies, Damned Lies, and Statistics
When, in August 1998, I learned I had a brain tumor and, two days later, heard the words “glioblastoma multiforme,” I knew it wasn’t good. Simply when uttered aloud, those words had a certain sinister ring to them. And, of course, there’s the median survival rate of one to two years.
I didn’t know that. I didn’t need to. All I had to do was look at the shock that froze the faces of my sister and brother-in-law, both physicians. At that moment, I asked them not to tell me my prognosis.
There is no way of knowing whether my decision to keep myself in the dark as to my prognosis figured in my survival. That said, my sense is that certain information cannot be unlearned, particularly in someone, like me, whose world, suddenly and without warning, had been overturned, particularly in anyone, like me, in such a fragile state.
One to two years to live, in other words, would have been seared into my mind. The clock would have started ticking.
Evolutionary biologist Stephen Jay Gould had a far more refined reproach. In July 1982, as he recounts in his 1985 essay “The Median Isn’t the Message,” he learned he was suffering from abdominal mesothelioma, a rare and toxic cancer usually associated with exposure to asbestos, with a median survival of eight months after discovery.
The news was devastating. But then Gould began doing some digging. As someone trained in statistics, he distinguished median survival, a measure commonly used to express survival rates, as the amount of time after which 50% of the patients have died and 50% have survived.
In other words, a median survival rate of eight months didn’t mean he had eight months to live. Given his relative youth — he was forty — the superlative medical treatment he knew he would receive, and his generally “sanguine” attitude, it meant there was no reason he could not be among the latter 50%. Above all, he recognized the near impossibility at diagnosis of knowing whether any individual will place to the left of the median — that is to say, before the eight months for his particular illness — or the right, after the eight months.
This was where he found solace. With his particular makeup, he could imagine himself surviving far out along the right of the median. And that’s precisely what he did. Following surgery and experimental chemotherapy, he lived twenty more years before dying, in 2002, at the age of sixty, from a lung cancer unrelated to his original disease.
2. The Unsung Benefits of Denial
I remember the first time I walked into an oncology ward. I saw the gray skin, the eyes the color of dull pennies, the puffy features. I saw the face of cancer. And then, to protect myself from the fear of becoming one of them, I looked away. I wanted no part of it. During chemotherapy treatments, I had myself treated in a small alcove separated from the main ward. For radiation, I kept my eyes peeled on a random magazine in the waiting room to prevent association with anyone else undergoing treatment there.
My mission was simple: to view myself not as an inhabitant in the world of cancer but as someone who happened to be in treatment for cancer but would continue, to the extent possible, to go about the routines of daily living in the land of the well.
Naturally, if “neither the sun nor death can be looked at with a steady eye,” as the French author La Rochefoucauld had it, neither is its opposite true. There were days when I lacked the strength to shield myself from the glaring reality of my situation. But those days were the exception.
It wasn’t the form of denial that Anna Freud described as an unconscious defense against painful and overwhelming aspects of external reality. That denial has been generally viewed as a pathological, ineffective defense mechanism.
Even an article on the Mayo Clinic website, while acknowledging that “short-term denial … gives your mind the opportunity to unconsciously absorb shocking or distressing information at a pace that won’t send you into a psychological tailspin,” warns that “denial should only be a temporary measure — it won’t change the reality of the situation” and counsels those stuck in the denial phase to consider talking to a mental health provider.
Of course, the kind of denial to which the Mayo Clinic refers is a denial that one has a disease, leading the patient to refuse treatment. But recent studies propose shifting the lens on the concept of denial—specifically, as an adaptive strategy in meeting the impact of the disease.
A review in the Journal of Psycho-Oncology exploring denial in cancer patients found that “denial was related to improved psychological functioning.” Those patients deployed “active strategies of realizing that one has cancer, but choosing not to let the illness control their lives, trying to brush the illness aside, and instead create a positive outlook.”
Ruth McCorkle, a pioneer in oncology nursing and professor of epidemiology at Yale, had this take: “Some patients compartmentalize their disease,” she recently told me. “It’s a way to shield themselves from paralyzing fear and at the same time remain functional.”
3. Practicing Denial As An Adaptive Strategy
In view of his positive outcome, let’s return to Gould’s essay — specifically, the reply from Sir Peter Medawar, his personal scientific guru and a Nobelist in immunology, when he questioned him on the best prescription for success against cancer. “A sanguine personality,” Sir Peter ruddily replied.
That was in keeping with Gould’s thinking. “In general,” he wrote, “those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer.”
McCorkle went further. “It’s about continuing to go about your routine. It’s choosing not to say I can no longer do this because I have cancer or even why should I continue to do this as someone with cancer and instead saying ‘why not try to do what I can?’ It’s about asserting control over circumstances.”
In my case, I adopted a maxim from my high school cross-country coach. When facing a seemingly insurmountable challenge, break it down into manageable distances, he’d say.
In other words, set achievable goals each day. Walking, for example. Walk 500 steps or, if you’re feeling a bit worn down, 100 steps, or even 50. Memorize a poem. If you’re not up to a whole poem, memorize one line. Or two. Draw a picture, or an outline of a picture. Work on a crossword puzzle. Try solving one clue. If you’re not up to more, put it aside.
There’s a fluidity to this regimen. The one essential: make a commitment to do what you choose as your activities every day, even if it’s just a pale approximation of what you might do if you were entirely well.
Why? Because, as McCorkle suggested, it’s a way of compartmentalizing your disease. It’s a way of creating your own sustainable reality within your self-imposed oblivion.
Courneya KS, Mackey JR, & Jones LW (2000). Coping with cancer: can exercise help? The Physician and sportsmedicine, 28 (5), 49-73 PMID: 20086640
Gould, Stephen Jay (1985). The Median Isn’t the Message. Accessed online 29 April 2015.
Smoll NR, Schaller K, & Gautschi OP (2012). The cure fraction of glioblastoma multiforme. Neuroepidemiology, 39 (1), 63-9 PMID: 22776797
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