YA cancer perks

This essay was originally a chapter in an early draft of my debut memoir, which is available now.

I didn’t expect cancer to mean something. I wasn’t the sort of person who needed to find the greater purpose, the reason behind what happened. Randomness and bad luck were explanation enough; maybe it didn’t mean anything. At 31, I was now a member of a club no one wants to join, a newly minted “survivor”. The cause of my cancer was unknowable, so after recovering from surgery and treatment I went searching for something else—a benefit, a perk. I deserved a good outcome after so much suffering.

I found several young adult (YA) cancer non-profits in the months after surgery, chemo, and radiation. The first organization I discovered ran outdoor adventure trips for YA survivors. I liked the idea of a trip to a place I’d never visited, especially if it was free. I was curious, eager to meet people my age who had been through similar shit. And I wanted to be somewhere else, away from the hospitals filled with old people, away from Seattle, away from the places I’d been sick and alone. I signed up.

1. Leavenworth

I didn’t connect with anyone on the first trip. Although I didn’t know it then, I was still in the fog of recovery. The trip to Leavenworth was a weekender, with light rock climbing and tubing along the lazy Wenatchee River. Everyone had nicknames—Crash, Spike, Apple. I was POTUS, because I had a serious face on and didn’t say much.

We stayed in a big cabin and had a personal chef. I’d finished treatment 3 months prior and the scar from the feeding tube in my stomach was still new and bright pink, but no one there would see. I wasn’t ready to even speak about it. I was ashamed, like the suffering and the feeding tube had been my fault, that I had failed in some way. Treatment had drained me of energy and the ability to feel. I was not myself—emotions and sensations were blunted. I couldn’t enjoy anything because I didn’t feel, not in the same way as before. I was alive but not living, not yet anyways.

There was storytelling and sharing, games and activities. The swag bags had t-shirts with logos. I remember a few faces and laughs but the experience was mostly unexceptional. I was too close to my cancer year, still recovering. My hair was growing back and I was thin, but no longer skeletal. The trip leaders were friendly and earnest, which was a little off-putting. Did they need to smile so much? How many of them had lived through treatments that hollowed out your personality? I didn’t want to be honest. I had lived through cancer and survived, but I wasn’t ready to wear that fact like a pride pin in June. I was not proud of how I’d suffered.

Becoming recognizable to myself would take a full year but I was convinced—three months out—I was ready for a rock climbing trip. Physically, there were no issues. The whole point was to be outside and remember what it felt like to be active, to remind yourself of the times before cancer. Treatment had wrecked my body and self esteem and I wasn’t prepared to be changed so profoundly, to lose the body I was still learning to appreciate. For a while, I was that scrawny 12 year old again, having shed 40 pounds. In the worst moments, the pain was excruciating, but it was brief. The humiliation was enduring. I hated how my clothes sagged and draped on my wiry frame. The fit and energetic body I liked being in, the one that wasn’t skinny, was gone. I was a shell. I’d lost control of my appearance and I was still in mourning. There are a handful of photos from this first trip and my face is the same in all of them—blank, absent, hollow. I looked the way I felt.

The random and awful experiences had yielded a trip, but I had learned nothing and befriended no one. I was still sick, just not physically, and I had no words for it. I went back home and back to work. The scar continued to heal and I gained more weight as the summer turned to fall.

2. Orange

The trip to Orange California was three months later. My mind had become recognizable again and I was eating normal foods as the lining in my mouth rebuilt itself. I was six months post-treatment and I found a YA cancer non-profit that was putting on a summit of sorts at UC Irvine, a gathering of survivors. The reason for this conference was ‘raising awareness’, which is another way of saying raising money. Feeling better, I decided to go. Perhaps I would make some new cancer friends, or at a minimum learn interesting facts about emergent research.

My Airbnb was an apartment a parking lot away from the hospital campus. My host, a young woman about my age with jet black air, lived there; she told me she was impressed by how quickly I showered. Huh, this is a strange thing to say to a guest. Was she imagining me in the shower? I’d honed this skill during chemo and radiation because it was easier and less messy to vomit while showering. I didn’t mention this, but laughed to myself as I walked over to the conference.

The event was outside, on a grassy lawn next to the hospital complex. Sixty people sat at round tables eating catered lunches. The program proceeded as you might expect—a welcome and introduction followed by an inspirational speech. The non-profit’s founder was charismatic and bald with a dash of New York salesman. I was skeptical. Everyone was too enthusiastic, so eager to hear this guy who told his story like it was some kind of achievement. I did not understand the appeal or the stickers with a cartoon bird giving cancer a middle finger. What did that accomplish? The whole thing felt like a marketing campaign.

There were cancer themed group activities and icebreakers. People shared their experiences and mentioned connections to the sponsoring organization, and places they’d traveled to attend similar conferences. A younger man proudly showed us a large tattoo across his chest: SURVIVOR, in big bold letters.

A curly haired girl from Chico CA was bubbly, eager to share the details of her cancer story. Like the guy with the SURVIVOR tattoo, she’d been involved with the non profit that organized the event and attended their flagship arena-sized conference. The YA cancer folks I met in Orange were more open about their experiences than the people in Seattle. But there was a strange competitiveness around their dedication to cancer related causes.

“I’ve been to the conference every year since 2010, and last year raised $10,000…oh…and I helped organize a 5k!”

SURVIVOR tattoo guy boasted about a trip to New York City where he met the founder of the YA non-profit. I had no bona fides where and ‘giving back to the cancer community’ was concerned. Wasn’t simply making it through that experience enough? I didn’t feel motivated to be an advocate for the cause, to raise money by raising awareness. I didn’t have the energy. I wondered what it was like to build parts of your life and identity around a disease and an awful set of experiences, to smile for the camera and celebrate the cancer cause. I did not want cancer to mean being a ‘survivor’—not in this way.

At the cancer conference, people my age seemed to have constructed their entire identities, online and in real life, around their diagnosis. “I am NAME, I was diagnosed with CANCER TYPE at age NUMBER.” Our conversations orbited around these diseases and the convention center sized events they described attending were designed to connect people who shared similar experiences…for the purposes of what, exactly? That was the bit I couldn’t figure out. What was the reason to fly to a different city and attend one of these events? There were speakers, sure, some who were prominent cancer influencers or oncology researchers. As I listened to the others describe the glitz and pageantry, I wondered if part of the appeal was simply being in the same place, next to another person who had felt the same pain. Everyone spoke about friends and connections they’d made. Why was that part still so challenging for me? What was I missing?

If the purpose of this summit was to learn, my main takeaway was that YA cancer conferences are profoundly weird. I heard the less glossy versions of folk’s cancer stories when the conference ended and we ordered beers at a nearby bowling alley. Some had begun their journeys in adolescence, which reshaped the entire experience of becoming an adult. Others, like me, had been blindsided later in life, but early enough that visiting an oncology ward full of old people was odd and disorienting. Everyone there was searching for something—a connection to another person who understood their suffering, a purpose and identity, a way to give all of that pain some meaning.

On the last day, one of the organizers invited me to coffee so I could ‘learn more about opportunities to get involved’. The pitch felt like a cold call. “Well, I’ll definitely think about it.” I said. I was polite but I had already made up my mind. My curiosity had brought me to California, to a cancer conference, and even though I was surrounded by people my own age who’d been through cancer, I felt alone and isolated. I did not want to join their booster club. I flew back to Washington. I did not sign up to get involved.

3. Truckee

I was busy making progress at work, so a full year went by before I took another trip. Someone I’d met at the conference mentioned a small non-profit that ran outdoor trips like the one in Leavenworth. I filled out another application, explaining my history with cancer. By now I was more adept at summarizing this story. The narrative was straightforward—diagnosis with rare sinonasal cancer, went through chemo and radiation, now in remission for over a year. I never counted the months because I didn’t want to give that little kernel of worry any more space. I flew to California again, this time for a skiing adventure.

The plane was cramped and my knees ached. I was eager to stand and deplane, to fully extend and move my legs. Somehow, in my haste, my knee articulated itself in a strange new direction. Pain cut through me. I had sprained my knee getting off the plane. Goddamn it. Why now?

I got a ride from the airport and made smalltalk with a friendly bearded fellow named Nick. We arrived at a rental house in a neighborhood of vacation homes, next to the ski resort. The snow banks were five feet tall. I shared a room upstairs with a guy named Eric who’d survived a more common cancer. I convinced myself that my knee was fine, and I donned a rented pair of skis and boots. I winced when I tried to move my skis laterally. Embarrassed, I admitted the injury and borrowed a pair of snowshoes instead. At least I could ride the lift to the lodge and drink a beer.

Back at the house, we ate meals and laughed. The atmosphere was more relaxed than the cabin in Leavenworth, or maybe I was more open to this sort of thing, having already tried it. There was more space between the hurt and confusion now. I remembered it clearly—I would never forget—but I was no longer wrapped in it.

We sat in the living room and shared our stories, with the group leader, Katie, providing prompts. She shared too, about her brother who died after living with cancer. Her presence was tender and calming. I felt seen. There was no agenda, she wasn’t trying to evangelize or fundraise. Her compassion was big and real and I could tell this was more than a job. Our conversations that felt like an embrace from a dear friend.

When it was my turn, I spoke and told my story, the unedited version, with f-bombs and worries about recurrence. I talked about being alone during recovery and how that affected me, the relationship I’d ended recently. I described my life now, what I was doing, the ways I’d been motivated and changed because of this monumental and unexpected event. Everyone listened and everyone spoke, sharing pains and beautiful moments. There were no calls to organize or fundraise. We were simply there, in that moment, with each other. Cancer was a commonality, something we all understood in our own ways, but it was not the defining theme of our lives.

We played in the snow and managed to pack together a slide into the hot tub off the back deck. I was laughing, shirt off, careening down a snow bank into the warm water. My body was recognizable again. For a while, it was unfamiliar and I was ill with disdain. I was ashamed of how I looked and what I felt. All of this was a lot to live through but I had struggled to show myself compassion. When I was recovering, I didn’t even know who I was—how could I love a self like that? My ideas about who I was, who I wanted to be, were solid forms build around my experiences, and all at once, everything was upended. I had lost that self—me, my body and my mind. I was unmoored and too confused to know anything, to be anyone. For I while, I was nothing, which was terrifying.

I played my favorite songs on a portable speaker and curated a playlist for our group. Hamilton Leithauser, Jessy Lanza, BADBADNOTGOOD. The music was lively and rhythmic, warm and full of yearning. I loved seeing reactions—heads nodding in time and feet tapping. I was contributing and felt capable. I wasn’t performing or using a hashtag to raise awareness. I was simply there, present with this group of people, enjoying their company, sharing something I loved.

I returned to Washington feeling renewed. For the first time since recovering, I shared the truth about living through cancer. Before treatment I made peace with the prospect of dying but I hadn’t considered prolonged pain and suffering during recovery. I wasn’t prepared and I had no way of knowing that I would be so sick and alone. I went looking for friends, for a self, for new memories to sit next to the difficult ones.

I’d been reserved in Leavenworth, not ready to share much beyond what you’d find in my medical records. The full story was too personal, the details were unsettling, best kept secret. At the conference in California I was more open, because everyone was, but it felt like a performance. The pains were real but lived somewhere behind the smiles and laughter. Years would pass before I understood the importance of sharing freely, with anyone. My time in Tahoe helped shape a new openness that would begin to heal me.

If cancer meant anything, it was more than catchphrases, photo ops, and fundraisers. The experience, this thing we lived through, was an opportunity to change and grow, to see the world in a new way. Our young lives had been interrupted by diseases, betrayed by our own bodies, but what had we learned? This is what I wanted to know. We were finding freedom in being outside, next to trees, closeness and connection seeing each other all in one space, and understanding sitting and listening. I was learning to show myself kindness, to speak up, to let go of the illusion of self. I was grateful for people I met, the ways I felt seen. We were all searching for something real and true.

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Acknowledgements

I’d like to thank my editor, Bailey, for pushing me to dig further into the why so I can tell better stories. I owe a big debt of gratitude for Katie at the Send It Foundation for being present in my life and helping to inspire this piece. Lastly, thank you to my wife Lindsay for your patience as I’ve been immersed in pages and stories and ideas while writing a book.