Today, I’ve now officially been a cancer survivor for 14 years. I was 45, sitting in my home office on a beautiful fall day, when the news came.
I’d like to reprint an updated version of an article I wrote about being a longterm survivor. It was originally published in the Summer 2008 issue of Heal: Living Well After Cancer:
By the time you read this, I’ll be 59.
I’m the same age as Red China and millions of other American Baby Boomers. Viewed broadly, my age is no big deal.
More specifically, though, I’m surprised to be 59 and in apparent good health. It’s shocking to me when I find myself looking at a future that may stretch into my sixties, seventies and even eighties.
You see, in 1995, when I was 45, I was diagnosed with Stage 2b breast cancer. Who knew I’d ever live to contemplate social security?
“Am I dying?” That’s what I asked my husband at the time. I can still see myself sitting up in bed, clutching my knees to my chest, running my fingers through my hair the way I do when I’m agitated.
He patted my shoulder and kissed me. “I don’t know,” is what he said. “I don’t think so. But I just … don’t know.”
So far, the news had been bad. The bilateral mastectomy and reconstruction had gone well, but the pathology report was troubling. The cancer had already spread to three of the lymph nodes under my left arm. The surgeon had waited to tell me till he knew my husband was in the hospital room with me.
“It’s not as good as we’d hoped,” he said, looking at the floor.
“It’s a fairly aggressive tumor,” my oncologist said several days later. She was blunter than the surgeon, matter-of-fact, brisk. According to the short biography handed out by her practice, her hobby was line dancing. (I liked her, but I wasn’t sure I wanted an oncologist with a hobby. I wanted my oncologist to spend every waking hour contemplating an immediate cure for cancer. What was she doing wasting her time line dancing?)
By this time, I knew so many facts. I knew that my odds of surviving five years were pretty good. The 10-year survival rate for my circumstances weren’t as comforting, though. I had less than a 50 percent chance of being alive then. My daughter was 13 and my son nine; I might not live to see them graduate from high school or grow up.
So many facts available – about surgery, chemotherapy and radiation. How to heal quickly, how to eat well, how to exercise.
But there was so much more I had to learn on my own. After surgery and before chemo began to take its toll, I had never felt more vividly alive in my life. Colors were deeper, jokes funnier, friends and family closer. I’d never heard people tell me they loved me as often as I did then; I’d never told them how much I loved them, either. Those words came from a different part of me, somewhere deeper.
Maybe I was dying, but I also had a new and dazzling sense of clarity about life, as if a strong wind had swept everything unimportant out of my consciousness and left only the essentials. I had one big fear instead of the hundreds of small ones that had dogged me my whole life. Remember this, I kept telling myself. Remember what’s important.
I didn’t, of course. That would have been impossible. I was hairless and bionic (with blank-faced breast implants and a catheter in my chest for the chemo). I was weak and nauseated and wretched. Who cared about clarity or a sense of what was important?
That was when two of my new friends, both cancer survivors, talked to me. They warned me that, oddly enough, some of the greatest pain and turmoil surfaced after treatments had ended. Chemo, miserable as it was, was also a distraction. You could focus on it, your balding, your nausea, how many treatments you had to endure. You could focus on it and ignore the underlying problem: You had had cancer. Your body had failed you. It might fail you again. Your odds of being alive in 10 years weren’t that good.
As they had predicted, when my treatments were finished, everyone else thought it was over. I was healthy, wasn’t I? My hair was growing back. My first novel was coming out. The struggle was finished, behind me, won.
I should be euphoric. I wasn’t. I was exhausted, confused and furious.
“I feel as though I should ask you how to live,” I said to my oncologist after my final treatment. She had no idea how serious I was, how desperate I felt. Later, in my journal, I wrote: “What do I do now? I wanted to ask her. Now that it’s all over, tell me who I am. I’ve forgotten who I am, who I used to be. Remind me. I need you to tell me, because I don’t know.”
My body and soul had been shattered. I was someone different at a time when I was beginning to look like my old self. Friends and family who had been ever-present during my illness began to drift away. It was, clearly, time for us all to move on. Except I couldn’t.
Like many cancer survivors, I began to frequent support groups then. Other cancer survivors were the only people who could understand me.
We didn’t all become close friends, of course. Cancer was our common denominator, but we all had vastly different ways of grappling with it. Some became religious or more religious. Some adopted a fierce optimism, refusing to speak about the possibility the cancer might come back.
“I always spoke of my cancer in the past tense,” a woman said at one meeting. Her meaning was clear: She had possessed the fortitude to banish the disease – unlike, say, those pathetic losers whose tumors recurred and killed them. It wasn’t true that I would have leapt across the circle of chairs and strangled her smug throat if friends on either side of me hadn’t clutched my arms. But I did think about it. (Who knew grammar could cure cancer?)
Still, there were so many others who became dear friends. We skipped the initial steps of most friendships, the tentative small talk. We spoke about the icy fears that stalked us, the terrors of checkup visits, the obsessive attention we paid to our formerly invincible bodies. (Was that just a pimple? A mosquito bite? A normal cough? No. Nothing would ever be normal again.)
Together, even in small numbers of three or five or seven, we were strong. We could speak of our fears, offer understanding and solace, screech with laughter about ourselves and the rest of the non-comprehending world. We were scared to death, but we had survived. Together, we were powerful. We could survive anything.
Except, at the most basic, physical level, we weren’t together at all. We were each trapped inside different bodies that carried different pathologies and separate prognoses. Close as we were, our bodies divided us into individual futures. Recurrences and metastases, harrowing treatments and hospitalizations came to us separately, if at all. So did death.
The dwindling numbers in our support groups reminded us more of loss than comfort. We were all, as cancer survivors, a wonderful, but perilous group of people to love.
Over time, the survivor groups met less frequently. We saw each other, too often, at funerals. We promised to get together again, soon. We exchanged new email addresses and phone numbers. Sometimes, we got in touch. More often, we didn’t.
Fourteen years after my own cancer diagnosis, I have survived so far. I’ve written books and articles and radio commentaries and traveled to other continents. My daughter is 27, working in California. My son is 23, employed by a law firm in Austin. My husband and I will celebrate our 37th anniversary in December.
I’ve been incredibly fortunate.
But it’s sometimes a lonely good fortune. I’ve lost my dear friends Martha Hale, Donna Ryan, Katherine Sorensen, Cindy Doran, Kathleen Holland, Alice Arndt, and so many others I didn’t know quite as well. They did everything they could to live, but their cancers were merciless.
So they are who I will think of when I turn 60. Since they left me, I’ve added some wrinkles and sags. I’ve slowed a little. I worry about having enough money for my husband’s and my later years.
These are the normal clamor and concerns of my age. But I always try to remember that my age and my survival aren’t normal at all. I’m growing older after fearing I was dying at an early age, going forward without some people I loved. They’ll never know the contentments, disappointments, strivings, uncertainties and unexpected delights and sorrows of aging as I will. They’ll never know about this time of life when, oddly, I feel happier than I’ve ever been before.
I want to do it well for all of us.
(Copyright 2009 by Ruth Pennebaker)
Read more about how it will happen