Nora Feely on cancer, facing her fears by naming them, and navigating a world filled with sharks
It turned out I wasn’t bad at handling the boat and quickly warmed to the feel of gliding through the waves. Like any good camp counselor, he was clear about the rules. “You have to learn what to do if the kayak flips,” he said. “It’s part of ocean kayak safety.”
If my kayak flipped, I mostly counted on my fear to catapult me back out of the water, but I still wanted to seem like a good sport. “Sure, tell me what to do just in case.”
“Nope. Kayaking out here, you have to learn not to panic if you capsize or get thrown out on a wave. Practice is important.”
How were we supposed to practice such a violent scenario? He grinned playfully across the water. I realized this tall motherfucker was going to flip my kayak.
“Are you out of your mind? The sharks!”
“We’ve been over this. There aren’t sharks here. This is an estuary—it’s only part saltwater, so it doesn’t taste right, and it’s not the right temperature.”
“You want me to believe that just because it’s not comfy for them, we’re totally safe?”
“Yes! Sharks would not like it here. There’s nothing to be afraid of.”
“But it’s possible, right? They could hypothetically get here?”
This led to a longer answer about what route they would have to take, how it was statistically extremely unlikely Great Whites would wind up here, how Jaws had prejudiced people against sharks and had huge environmental ramifications. I’d heard this speech in defense of sharks multiple times, delivered safely on land; I was no more convinced as we floated in the middle of open water in little plastic boats.
“You didn’t answer the question. It’s possible?”
He laughed and shook his head. “There are no sharks. You’re going in.” With that, he took the front end of the kayak, pushed down for leverage, and flipped the boat.
I screamed, went underwater, gasped for air as my lifejacket helped me resurface, then scrambled to recover my kayak. Outdoorsy Guy cheerfully called directions at me, as if being thrown out of a boat into open water was a perfectly normal way to spend a Saturday. He coached me through the motions to safely get back in the boat, and I realized he was right about needing to focus more on boat safety than on possible sharks. But I never believed him that there was nothing to fear.
About ten years after college, I found the water again. I started swimming laps to help with some back pain and quickly fell in love. Nothing soothed my jittery brain like the long arm pulls and swift kicks of doing laps, the submersion in cool water, the silence that surrounds me even in a crowded lane.
My swimming improved, and I started to train for a sprint triathlon—and this time I learned to properly swim in open water, wetsuit and all. The triathlon was back in Long Island Sound, and as I pulled on my goggles, I repeated Outdoorsy Guy’s facts from years before: They hate estuaries, they don’t live here, an attack is statistically almost impossible. As I rounded the buoys that marked the course, I saw movement below the water. A fin jutting the surface, a sudden current against my leg as if a giant tail was swishing by. Of course, it was just another swimmer. But I still believed the sharks were out there. Waiting.
Instead, something else got me: Eight months after my triathlon, I was diagnosed with cancer. At thirty years old, a tumor covered more than a third of my chest. My treatment options were either a course of chemo or a clinical trial for an immunotherapy drug combined with chemo; the clinical trial hoped to find less toxic treatments for future patients.
Participation in a clinical trial involves a lot of tests and a lot of paperwork that lists all the ways you might die. One line stuck out: “In some study participants, caused sudden heart failure resulting in death.”
My oncologist patiently answered my questions. “Let’s talk about this heart failure thing—it can happen anytime? Not just while I’m getting the infusion?” I imagined in an infusion, they would notice something was wrong and the doctors could magic my flailing heart back to life.
Without preamble, she responded that no, it could happen at any time while I was on the drug. I initialed the page anyway. In the cruel inequities of our healthcare system, I was acutely aware of the privilege I had to make any choice at all.
For months, to lay down put too much pressure on the tumor, so I slept bolstered up on the couch. I started to have shooting pains in my chest at night. When the pain got too intense, I would lean forward, clutch my left side, and try to decide its source. Was it inflammation? Was the tumor shifting in my chest?
What does it feel like when a heart fails?
Illness is complex, and my heart was just one of many worries. In my six months of chemo, I had almost no white blood cells to fight off infection. One missed hand wash or one cough from someone nearby could infect my body and send me to the hospital, so I was ordered to stay mostly isolated for months. I tried to act fine during the day. At night, I laid awake, alert for signs of danger and terrified of the unknown. I worried about blood clots. I worried about sepsis. I worried the immunotherapy would turn my immune system against my organs. (This sounds made-up; it’s not.)
These are the questions high-risk people ask while our government inexplicably limits testing and the President acts as if the pandemic is already over.
Like Outdoorsy Guy, I tried to marshal statistics to convince myself that these things simply wouldn’t happen. Maybe the people whose hearts stopped were older and sicker. Maybe I was overreacting. But the fear only grew as I tried to reason it away.
Eventually, I went to an oncology therapist and talked to her about what kept me awake. I slowly realized it wasn’t just the sharks that had haunted me for so long. Somewhere between the fearless toddler who threw herself into deep water and the hyper-vigilant thirty-year-old sitting on the therapist’s couch, I’d become intensely afraid of all kinds of things I couldn’t control—car accidents, plane crashes, sudden mysterious death. I’d tried to talk myself out of my fears. But just like that day in Long Island Sound, I never believed it enough.
I had to accept that the risks of treatment were not a figment of my imagination. I could die. Trying to pretend otherwise wasn’t working. Instead, I started to treat my fears as characters in my world. Annoying, invasive, uninvited characters that would always be with me. I had to learn to coexist with them and decide how big of a role they’d play in the story. Starring? Recurring? Something in between, like the neighbor character who shows up every day to annoy everyone?
In the early days of my diagnosis process, we didn’t know what was coming next. In the hospital, I worked hard to keep up the pretense that I could handle everything. My partner, Nico, sometimes left my hospital room to gather himself in the hallway. It was hard to see me as a patient, and he was grieving my sudden illness eighteen months after our wedding. But I didn’t crumble. I thought if I held on tight enough and kept my own fears at bay, I could keep everyone calm.
From my hospital bed, I smiled and sent emails and figured out how to finish out my final quarter of graduate school. I told my wonderful advisor over the phone that I wasn’t taking a medical leave and would somehow still be graduating in twelve weeks. In conversations with friends, I jokingly called the massive tumor in my chest Garfield (big and lazy), and talked about how sexy the scar on my clavicle would be after diagnostic surgery. I could do this.
One night, a family friend stayed over in my hospital room. Alone with someone who could handle it, rather than my reeling family, I stopped smiling and making plans. In between sobs against her shoulder, I said my fears out loud. “What if my chest collapses in surgery and I don’t make it? What if chemo doesn’t work? What if I die at thirty?”
I named what terrified me and dragged it all into the light. She held me, tight and close and quiet. The grip of those fears began to loosen.
“There’s still so much I want to do,” I whispered.
There is power in naming, and there is also power in solidarity. When someone was willing to face my illness with me, to sit in the darkness of uncertainty, it didn’t feel quite so scary to not know what was out there.
Three months after treatment, Nico and I moved from Chicago to New York. We still go back to my team in Chicago for scans, and we have a planning summit before each trip. Settled on our couch with whiskey and cheese, Nico opens with the same question each time, naming our one big fear: What happens if the scan is bad? I tick off the list of medical steps—the next level of scans, the excruciating wait. Nico takes a drink and sits for a beat as we each imagine that week and all its possibilities. Then we talk about where we’ll stay in Chicago, make sure to book flights we can move easily. We talk about where I’d get treatment if I relapse.
When I got an additional breast biopsy last spring, I warned him that I would refuse to get a mastectomy unless it was essential to my survival—not because of the intensity of the procedure (but sure, also that). I’m just really attached to my boobs. He laughed, hesitant (and horrified), as I yelled, “they’re perfect!” in a burst of hubris and desperation to hold on to something I still liked about my damaged body.
We are a society that smothers fear. Collectively avoidant, we try to maintain our definition of normalcy—no matter how false or oppressive—at all costs.
My most recent scan process looked a little different. Covid-19 has shifted the world in hundreds of ways, many of which have changed how us high-risk people go about our medical care. My scan was scheduled for late April, but flying to Chicago was obviously off the table. Without any symptoms of recurrence, my oncologist decided it wasn’t worth the Covid risk and knew it would be impossible to schedule a routine test in the tristate area, anyway. We agreed to put it off.
But one night as I brushed my teeth, I noticed the area above my left clavicle looked swollen when I raised my arm. My first lump appeared in the exact same spot, marked by a surgical scar.
Now, we had to decide what was more dangerous: to get a scan in the epicenter of the pandemic, or to let a potential recurrence grow for a few more months. These are the questions high-risk people ask themselves while our government inexplicably limits testing and the President acts as if the pandemic is already over, while too many people adamantly refuse to wear masks, while exhausted parents are left with few options, while workers and teachers are forced to put themselves at ever higher risk because there are no plans to protect them or help them pay their bills. Is the cancer, Covid, or this administration’s policies more likely to kill me?
We are a society that smothers fear. Collectively avoidant, we try to maintain our definition of normalcy—no matter how false or oppressive—at all costs. I did it in the hospital and I did it early in treatment. But I learned better. You can’t deal with something you won’t acknowledge.
Last year, about two months after treatment, I went to Florida to rest, thaw out, and try to get some strength back at a Buddhist meditation center near Fort Lauderdale. I spent a few afternoons at the beach, reading Mary Oliver and staring at the waves. One day, I decided to swim some real laps; I’d missed them like a physical ache. I steeled myself for my old foe, open water. Swimming in open water is not like swimming in a pool: The water is dark and you can only see a little ways in front of you. Rather than turn your head to the side, you have to continue your stroke and pop your head up to check your path, all while you try to breathe as the waves crash over you.
As I waded in, I told myself that this isn’t the YMCA pool, or even Long Island Sound. This is South Florida. Sharks love it here. But I didn’t want to dart in and out again, too afraid to enjoy the water. I made a plan: If a shark came for me, I’d bop it on the nose like a giant, deadly dog that won’t let go of the tennis ball. No denial, no recitations of scientific facts. Instead, I acknowledged that the sharks are a real part of the ocean, the way fear—and illness—is a real part of life. As I dove in with my goggles on over my still-almost-bald head, I thought, “I’m here with you, sharks.”
If the sharks were there, they let me go on by. I kicked and pulled my arms, finding my stroke again after a year without laps. I gasped for breath and looked into the dark water. Not in the absence of fear, but in the full, thrilling recognition of it. As I often did during treatment, I felt intensely alive.
A few laps later, I stumbled back out of the water. Dizzy and breathless, I was surprised that the earth, the solid feel of packed sand beneath my feet, was still there after those tumultuous moments in the ocean. I hope we stumble out of this the same way, surprised and grateful to find a world on the other side.
Nora Feely is a freelance writer, advocate, and social worker who studied trauma and resilience at the University of Chicago. She is from St. Louis, Missouri, the hallowed birthplace of toasted ravioli, and recently moved to the East Coast. You can find her on Twitter @nkfeely or over at her blog ButYouLookGreat.net.