SGO Wellness: Building a New Vocabulary Around Survival

I’m hardly the first person to point out that the vernacular around cancer isn’t great. Both patients and providers have pointed out that likening cancer treatment to a “battle” and using words like “strong” and “fighter” makes it seem like patients have a choice to “beat it” or just capitulate and let cancer have the final word. But through often unpredictable cancer journeys, these labels persist.

I was 27 when I was diagnosed with cervical adenocarcinoma. First in 2017, then I experienced a recurrence almost exactly a year later (I really hate January). This kicked off a nearly four-year period of chemotherapy, surgeries, procedures and hospitalizations that completely curtailed my independence. I was such a frequent guest, the nurses I had gotten to know over 25+ hospitalizations invited me to staff birthday parties in the break room, which I attended with my IV pole and in my nicer robe. I received extraordinary care and was surrounded by supportive family and friends, and a dog my brother and I conned our parents into during a moment of weakness. I’ve been cancer free for six years now, which I’m aware, on top of everything else, is in part due to significant privilege.

All these years later, there are still many people in my life who have no idea I was sick. And I am usually inclined to keep it that way. I never wanted to be a “fighter” or “survivor” and have the word “cancer” stamped on my forehead for the rest of my life.

Recently, I listened to a TED MED talk by Debra Jarvis, “Yes I survived cancer. But that doesn’t define me.” A hospital chaplain and breast cancer survivor herself, her talk discusses how the identity of a “cancer survivor,” from both external and internal pressures, can be static and all-encompassing. Rather than taking on the trauma of cancer as an identity, she suggests we see it as an experience, and not a defining characteristic. Her words made sense. My obstinance to being branded a “survivor” is fair, but it doesn’t mean I have to pretend I’m the same person who walked into a gynecologist’s office seven years ago expecting a normal visit. It’s helped the veneer I’ve spent years carefully constructing begin to crack.

There’s not a day that goes by I don’t think about having survived cancer. It goes beyond reminders from media and everyday conversations. Having cancer fundamentally changed the body I live in and how I’m able to interact with the world. I now have to think about ordering medical supplies, decide if eating a kale salad at work will wreak havoc on my intestines and avert passing out on the 3 train during a hot flash.

But I’m figuring out how to adapt.

I’ve steadily built my life back, thanks to the doctors and nurses who listened to me, and an unshakable support system. Things look much different than I would have thought, but I am cognizant of how quickly the mundane elements of my day, from lugging laundry up three flights of stairs to sitting through an endless PowerPoint presentation, can be taken away in a moment. I’m learning to be honest about how cancer has irrevocably changed my life, instead of refusing to discuss it out of fear of being labeled. And, while not always easy, I’m discovering a new normal. I’m slowly accepting that rather than having to slap on a “survivor” sticker, I can instead live almost “beside” cancer, acknowledging its effects but steadily moving forward. And I should really stay away from kale.

While survivorship is a privilege and I know it was never guaranteed, I still experienced loss. The life I had known until I was 27, in what I usually call “the before times,” is in the rearview. But I’m slowly becoming more forthright about cancer to the people in my life by building a new vocabulary around survival. When I think about what happened, I am grateful, sometimes depressed, and occasionally angry–I’m just figuring out how to say it out loud.

Rachel is a patient in Brooklyn, NY.