I received my diagnosis – salivary gland cancer, a type so rare that it doesn’t have a real name – just two weeks after I moved across the country to start a full-time graduate program. In movies or shows, when someone receives a cancer diagnosis, they’re in the doctor’s office, holding hands with a loved one, sitting across the desk from the physician with scan results in the background. When I received my diagnosis, I was walking home from picking up Korean takeout. The sun was setting over the city, turning old brick row houses a soft pink and purple. My phone started to ring as I walked, and I felt it couldn’t be good news if my surgeon was calling so late in the evening. I’d been waiting almost five weeks for the surgical pathology report from the “almost certainly benign” tumor removed from my parotid gland. The results were supposed to be back within five days of the surgery.
I stepped off the sidewalk to sit on the side of a fancy hotel a few blocks from my apartment while I took the call. I was sitting under an antique lamp post, like a dramatic spotlight illuminating one of the worst moments of my life. The surgeon began speaking as soon as I answered: “Yes, so the folks at Mayo Clinic are finalizing their second opinion, but they are going to call it a cancer.”
I wasn’t surprised. Since I had felt the lump in the soft spot behind my left ear, accompanied by inexplicable pain for over two years, I knew something was not right. Somehow, I kept my head on straight enough to finish the call, walk home, call my mom, and sequester myself in the bathroom. I was alone, but for a while, that’s what I needed. No distractions, no emotions from other people, just space to cry, get angry with God, and think. What do I do now? How do I tell my family and my friends? What about grad school?
I finished my summer graduate classes as I worked through oncology consults and slowly moved toward radiation treatment. My mom visited and helped me with these things, but I felt more alone than I ever had in my life. I had this recurring picture in my mind that my life was like a path in the woods. Before the diagnosis, I was walking along the path with people – my family, graduate school peers, friends. Suddenly my path diverged from everyone else, and I couldn’t get back. I could still see people walking, but I kept moving farther and farther away.
Going through treatment was like walking on my lonely path through woods that just kept getting darker. I was stressed, overwhelmed, and in pain. I stayed in school part-time, but while my student peers talked about class and attended social events together, I stayed at home and worried about eating enough tasteless food to avoid a feeding tube, about whether the radiation would give me a secondary cancer, and about dying. I tried to join as many social events as I had energy for, but it was hard to connect with others in a COVID-safe manner. As fall progressed, outdoor activities moved inside, and I could only wear a tight KN95 pressed up against the radiation burns on my face and neck for so long. I tried to connect with young adult support groups, too. It was humbling to hear others’ experiences, and it helped me gain perspective. But a once-a-month online chat for an hour just wasn’t enough to counter my isolation.
I wish I had more connection during that time. It was difficult, dark, and painful, and my treatment experiences bred in me a deep cynicism about the lack of quality care in our healthcare system. There were too many times I felt like I was screaming into the void, with no response to my MyChart messages or calls to my oncologist’s office.
Eventually, though, I began to meet other young adult cancer survivors, and it was like emerging from the darkest part of the woods. A local AYA nonprofit held an in-person meet-up after two years of online programming. I was back in full-time classes with my grad school cohort (though I wouldn’t graduate with them in the spring). Most of all, I attended a First Descents program and kayaked with other young cancer survivors. We were together for only a week, but I can still text our group a random cancer-related question and know someone knows exactly what I’m talking about.
I still have never met anyone with the exact same cancer type as me. I’ve talked to a few older adults who had cancers in the parotid gland, but no one who had the “no named” cancer treated with surgery and radiation. I once used the national SEER database to look up the cancer incidence for people aged 25-30: only 3 people in 2018 had the same type of cancer. When the 2021 data is released, I’ll see myself in that statistic, and I’m determined to find the other people with me.
Finding other people with the same cancer type might bring some relief from feeling isolated, but it might not. I think my original mental image was wrong: I pictured myself walking on the same path as everyone else, surrounded by my family and friends. Instead, I think I’ve always been walking on my own path, sometimes close to other people walking their paths, and other times farther away. Connections with others ebb and flow, and only I know what it’s been like to tread this exact ground. I’m learning to accept that reality, that I may always experience some amount of loneliness, especially when it comes to cancer. But I’m grateful for the opportunities to meet other people who have hiked similar terrain, and I keep my eyes open for others searching for connection.
“God, this is a time of
major rethinking of all that my life means.
help me, guide me.
‘this is what the LORD
says: stand at the
crossroads and look; ask
for the ancient paths, ask
where the good way is,
and walk in it, and you will
find rest for your souls.’ -Jeremiah 6:16, NIV”
-a blessing from Kate Bowler