My second-grade yearbook is hidden carefully in my closet, and I refuse to show it to anyone. The photos inside reveal a year of my life where I was weak, bald and attending hospital visits as often as other kids attended sports practices.
At age seven, I was diagnosed with Rhabdomyosarcoma, a rare pediatric cancer. I underwent nine months of treatment and six weeks of proton radiation. My disease was far from secret due to my long absence from school and the visible effects of chemotherapy.
Like many childhood cancer survivors, this identity of “cancer kid” followed me through elementary and middle school, long into remission. I was dragged out of the girl’s bathroom by a teacher in 2nd grade due to being mistaken for a boy and unaware elementary schoolers constantly questioned why I was allowed to wear hats at school. A comment about the portacath scar on my chest from a small child at a swim meet led me to avoid bathing suits until college.
And like many childhood cancer survivors, I have found myself stuck between repressing my negative experiences or embracing them as essential to my identity.
As unique as my situation may seem, about one in 285 kids will be diagnosed with cancer before age 20, and over 85% will survive. It is likely that throughout your daily routine to the grocery store or a coffee shop that you will interact with someone of a similar background.
When childhood cancer patients return to school, the drastic change does not go unnoticed by classmates. Unlike most adults with filters, children often automatically say what comes to mind.
“Kids in elementary school didn’t understand why I was bald all year and why I had to have a little extra help. There was a lot of bullying in early elementary school years,” Marnie Howiler, a sophomore at Appalachian State University, said.
Howiler was diagnosed with cancer at age five, ten days into kindergarten. The tumor on her kidney spread to her lungs and heart, requiring 13 rounds of chemotherapy, 11 days of radiation treatment and the removal of her right kidney.
“Clothes don’t fit me right because I’m, like, lopsided, and bathing suits look weird because I have this huge scar across my stomach,” Howiler said. “One time I was at a waterpark, and this kid came up to me and asked if I got bit by a shark.”
Jeff Ungetheim, director of the children’s cancer support program at Wake Forest Hospital and a licensed clinical mental health counselor and supervisor, pointed out the effects of insecurity regarding treatment scars.
“Probably two-thirds or three-fourths of patients, including guys, check high on the question that says ‘I don’t want people to see my scars’,” Ungetheim said “So, what’s the impact of going to the pool or having a sexual relationship?”
As each cancer survivor matures and gains new aspirations, new obstacles may prevent them from being honest about their stories.
“There are fertility issues for cancer patients in some cases that would be scary to bring up with a significant other about the possibility of being unable to have children,” Ungetheim said.
Another case he often sees is survivors unable to reach their goals due to their honesty.
“Several young adults who want to go to the military have to face the fact that the military was not going to take them. It was devastating,” he said. “So, in that case, they had to have given their history, but in other cases, it might be something they don’t want people to find out.”
It is difficult to hide a part of our lives that has made its mark on us physically and mentally, yet when I moved to California prior to high school, that is what I attempted. With the idea of a new start, I was set on leaving the C word in the past.
This approach created its own problems, such as being unable to explain the frequency of doctor visits, wearing shirts at pool parties, and avoiding speaking about any memories from earlier years. I was constantly trying to decide whether it was better to inform those around me of my past or to keep it locked away.
“I feel like it’s such a big part of my life, and it’s affected me in so many ways that I don’t want to keep it a secret from people. But it’s also not my entire personality,” Howiler said.
Marnie, I and many other childhood cancer survivors and their siblings found refuge from this dilemma at Camp Care. All campers were either currently in treatment, in remission or siblings. We wore bathing suits freely and didn’t have to worry about being misgendered due to our lack of hair.
My brother, Jay Sadoff, attended the camp as a sibling many summers until he aged out at 16. He has returned as a counselor for the past several years.
“They do a really good job of using the cancer connection and letting the kids know that there’s a whole camp of kids in the same boat,” he said.
The camp includes a celebration of life to honor and remember past campers who have passed. Campers mourn their friends who lost the battle that all campers fought separately yet together. In difficult moments such as these, emotions that are hard to comprehend by others outside the community bond us together as survivors.
“It’s always a pretty impactful part of camp when the campers themselves start to have these candid and meaningful conversations about their cancer and about the connection that they share,” Sadoff said.
During college, I’ve found a similar outlet through the National Children’s Cancer Society scholarship E-thread. As part of the financial scholarship, we also engage in a monthly email discussion where we answer questions regarding our cancer journeys.
“If they’re struggling with something and they’re not sure how to get through, hearing what people are doing to get through it might be a great benefit might help them,” Shelly Shuetz, program assistant for the NCCS, said.
One particular question within the E-thread stood out to me, asking whether we tell others about our experiences. Many respondents had similar thoughts, talking about the awkwardness that arises after telling someone about their cancer and the wish not to be treated differently.
“I always kind of say it in like a joking manner. I say, I had cancer when I was little, and they’re like, oh my god, really? Yeah. But it’s okay. Like, I’m fine now,” Howiler said.
When someone decides to tell you their story, there’s no perfectly crafted response. The best choice is to listen unjudgementally and understand that while this event may have greatly impacted their life, it does not define them as a person. We do not request sympathy, but rather understanding.
I still have difficulty deciding when to bring the topic up in conversation, and my second grade yearbook continues to be stashed in my closet where it will probably stay for a while. However, I’ve felt empowered knowing that every time I entrust a friend with this information, they become aware of a part of my life that I would not be myself without.
