Brenda Denzler is a writer and editor living in North Carolina. She received her doctorate from Duke University and worked as an editor at UNC-Chapel Hill before she was diagnosed with inflammatory breast cancer in 2009. Since then, she has devoted a great deal of her time and energy to understanding and writing about cancer, cancer treatment and the impact of pre-existing PTSD on the ability of doctors to give and patients to receive medical treatment.
There's a difference between being treated for cancer and being a cancer survivor.
It has always struck me as absurd to call people newly diagnosed with cancer “survivors,” as if their failure to die of the disease before diagnosis was a marked accomplishment. To me, when you’ve survived not only the cancer but the rigors — and risks — of cancer treatment, that’s when you have become a survivor.
Recently, however, I’ve realized there’s another reason survivorship doesn’t begin with diagnosis: most people don’t really become patients all at once, in that brief moment in time when they learn they have cancer. Rather, patienthood entails a transformation that tends to emerge gradually and may lead to becoming a survivor. It starts with becoming a person being treated for cancer.
My friend Brigid was diagnosed with triple negative breast cancer last spring. On the surface, she seemed to take the news of her illness well. That first day at the cancer hospital, meeting her team and learning about their treatment plan, she sat cheerfully on the exam room table in one of those thin little hospital gowns as the never-ending succession of doctors and nurses trooped in and out, telling her a hundred and one things that she only partly understood, scores of things she didn’t understand, and a few dozen things that only went as far as her auditory nerve and never made it from there to her brain at all. Through it all, she maintained a look of relaxed interest.
Until everyone left the room. Then her face would fall and she would assume “the look”—that far-away gaze into a distance where time no longer moves forward or backward, where all things live in an eternal present moment and everything exists just as it always has, and yet nothing exists except for the one terrifying reality: “I have cancer.” It was a deer-in-the-headlights look that she shared with me but usually kept carefully hidden from her doctors and nurses.
In the weeks that followed, I was surprised at what was necessary to get Brigid through this. I’ve never been a support person before. I was called upon to answer her questions, explain and even remind her about the doctors’ orders (repeatedly), and in general keep her moving forward with her treatments.
“No, your cancer is not stage 3. They said it was grade 3. Let me explain the difference…”
“I think you should get the port. I know it requires an operation and you’re very afraid of it, but it’s going to make getting your infusions so much easier for you.”
“I know you don’t have a fever, so you don’t think you should call the oncology nurse. But you are so weak that you can barely walk. I think you need to go to the ER.”
“Seriously. Use the wheelchair. Don’t try to be a hero!”
“Yes. You could refuse to take any more chemo. I know how miserable the side effects are. You seem to be having a harder time than I remember having. But before you make a final decision, you need to understand what the risks are in doing that. Let me look up some info for you. I’m not saying not to do it. I’m just saying know what the risks and benefits of doing it are, and then talk it over with your doctor.”
“I know. You don’t usually drink a lot of water. But you have to increase how much you drink so you can wash that chemo out of your system as quickly as possible. Otherwise you’re going to have to go back to the ER to get fluids.”
“Yes, to some extent they are guessing, with all these treatments. But not totally. There have been all kinds of studies done to narrow down what works best in what circumstances. What they’re doing for you is based on their current understanding of what is going to give you the best chance of being alive and cancer free in the years ahead. But you’re right: it may or may not work—and no one can say for sure.”
“No. This is not pointless. Your situation is not hopeless. It is serious. Your risk of recurrence is high. That’s why they’re throwing everything at you but the kitchen sink. Don’t lose heart.”
Her doubts and fears tended to emerge strongest during sleep-deprived nights and in the middle of the worst of the side effects. Once or twice I felt like I was talking her down off a ledge, just trying to get her through the bad hours and back to an emotional island where she could find comparative calm and a glimmer of hope once again.
Then, one day, it happened. I can’t pinpoint the day the change occurred, but I remember when I first noticed it. We were sitting in a local restaurant, where we’d just eaten lunch. As we lingered over coffee, I mentioned my trouble with some long-term side effects from my own treatments. And before I knew it, the tables had turned. It was Brigid offering me support and understanding — one knowing patient with cancer to another. As I looked at her in surprise, I realized that the “deer-in-the-headlights” look had left her eyes. She was here, with me. Not a terrified stranger to Cancer Land whom I was leading gently by the hand, but a bona fide resident.
In the weeks that followed, I noticed dozens of little signs that Brigid had become a fully autonomous patient with cancer and is on her way to becoming a survivor. She still raises questions about her treatment plan, but more from a place of strength rather than abject fear. She has learned to love her port. She tracks the doses of her oral chemo on a calendar so that she doesn’t get confused, and she willingly swills water by the bottles full in order to wash the chemo through her system as efficiently as possible. She manages her anti-nausea meds like a pro. On occasion, we even talk calmly and rationally about the what-ifs: what if it comes back? What if she dies?
Brigid has made the transition that marks the difference between a person being treated for cancer and being a patient with cancer. The timeline of her life is moving again. Her life story is forevermore divided into a “before my diagnosis” and an “after my diagnosis,” but that “after” includes a future now. Like most cancer survivors, she is learning how to both face the fact that she may not be here much longer — and yet live as if she might be here forever.