I have always known that at last I would take this road.
But yesterday, I did not know it would be today.
- Ariwara Narihara, 9th century Japan
We all live with an expiration date that we try to ignore, while creating a satisfying life in the meantime. Just before a cancer diagnosis, we each live our lives, minding our own business, as mechanics, secretaries, stay-at-home parents, dentists, or even psycho-oncologists. Suddenly, often through an event as trivial as a pain in our side or a cold that won't go away or a tiny lump, the entire basis of our daily existence comes into question. All the existential fears we hide in the back of our heads come screeching to the front. Even someone like me-whose work has revolved around cancer-is taken aback by the abrupt switch in her identity. Learning how to cope is often a painful period of trial and error, as we slowly learn what makes us feel better and what makes us feel worse.
The hallmark experience of this phase is the sense of being overwhelmed by an alien entity, and the flood of I don't know's. As time passes and more information is gleaned, the uncertainties will narrow. But between the initial diagnosis and the final pathology report, everything is open to question. How bad is it? What's the chance I'll die? When? When will I know? Will I need chemotherapy? Surgery? Radiation? Will I be bald? Nauseated? Too sick to work, or take care of my kids? Do I want to trust the first doctor who diagnoses me, or do I shop around? For a few weeks, the answer to all these questions will be "I don't know," making it difficult to know how to cope. Someone with an 85% chance of cure might cope differently than someone with a 10% chance.
On top of all those questions is another crucial set of questions—whether to tell our friends, or whom to tell, or how to tell it. This is a complicated business, because how other people react can have profound effects on our ability to cope. These issues arise even among patients themselves, for example, in the envy we can feel for fellow patients with better odds than ours. Or the feeling that I had no right to complain about my stage II potentially curable cancer to my stage IV friend, who would have to be in treatment for the rest of her life. I personally found talking to other patients the most helpful, despite the complications. Those who were many years past treatment helped me imagine a day when I might be in their shoes. And those who'd only recently finished treatment or were still there helped me feel less alone and alienated. I was even comforted by the memory of former patients of mine, whether or not they survived their illnesses. Because cancer patients—and patients of all manner of catastrophic illness—fight two separate battles: the battle to survive, and the one to have a meaningful life with joy and purpose, regardless of how the first battle goes. Though this was a club I never wanted to belong to, I knew I was in the best of company.
Underlying all these issues is the reality-denial continuum that marks our general personality styles. Some of us want as much information as possible, while others want to know only the bare minimum required to make informed decisions. What makes things more complicated is that the realists and deniers need to learn to coexist. Often, the deniers think the realists are too negative, while the realists think the deniers are intellectually immature. Over time, we need to learn to respect each others' styles. Though a card-carrying Realist myself, I learned a surprising mantra from my supervisors when I started working in medical psychology-unless it interferes with treatment, denial can be your best friend. And while I would make a full-time job of learning about my illness and my options, I came to respect the place denial had in helping people enjoy themselves, even in the face of what seemed like insurmountable odds.
Finally, this shock and awe period profoundly affects our experience of time. As our future is threatened and every minute seems more precious than it had been before, time itself feels as if it's speeding up. We fear we won't have enough time to accomplish all the things we want to do; we might not even have known until this threat what those things were. All we know, while we run around consulting doctors and submitting our bodies to more tests and scans, is that we want this cancer out of our bodies yesterday. On the other hand, when it comes to waiting for results of those examinations and scans and biopsies, and finding out whether we can be cured or how nasty our treatment might be - time can move agonizingly slowly.
And when those results finally come back, we have to make decisions, finding hope where we can in the face of all the uncertainties. For me, that meant learning that I had multiple tumors that had infiltrated one of my nodes. Then, we're catapulted into the second psychological phase of cancer.
Next time: Phase Two: The Battlefield
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