The Cancer Story I Didn't Tell

By Ashley Brown

Held down. I remember light and I remember terror. My heart races. Stabbing searing pain three times. Three permanent tattoos across my hips. “To make sure we line you up for radiation correctly every time.” I stare at the ceiling, following the circle of light that changes colors. Changes colors just like my skin, now thin, brown, and brittle. On the ceiling, there is a circle that is a rainbow. Real rainbows are circles anyways. They burn the cancer from my body, just my skin is in the way. Every Friday, I sit in the car on the drive and then they burn me. Until my skin breaks and until I move through the degrees, end on third-degree burns. I wake up in the night and scream. A resident sees the burns and they change colors too, now a pale white. “We need to burn all of the cancer. We must continue.” They give me drugs now to numb me so that they can burn me. I drift away on morphine. They burn me and I burn.

I wore my first sports bra when I was six: it held my catheter, the tube stemming from my chest, in place. “This will prevent it from getting tugged by anything.” I dream of my sisters playing with me again and suddenly they grab the tube and pull. They pull and I unravel. I unravel, a spool of yarn untethered with each tug as my organs are pulled outside of my body. I still dream it.

I am at a sleepover and we want to watch a movie. I am 9 but the movie is rated PG-13. I ask to call my mom to get her permission. My friend laughs at me, but I don’t understand. There are rules. Don’t scratch your burns. Don’t play with your catheter. Rules are important. Knowing rules and following them mean I get rewarded. “If someone gives you anything but Tylenol, what do you tell them?” “I can’t have that. It is an NSAID, those are too hard on my kidneys.” I am very smart, very responsible for following rules. I hide my tears as we begin to watch the movie.

I am the new kid in a small school where everyone has known each other since kindergarten. They ask if I am in the wrong classroom. I look too young to be in 5th grade. At my new ice-skating rink, there is the group of big girls and the group of little girls. I am seen as too young, too bad of a skater, to be invited with the rest of the little girls. Besides, to get close to them, I would need to do synchro with them. You are not allowed to wear gloves for synchro and my circulation is too bad. My hands will turn translucent and then blue again. In every group number at our yearly Nutcracker, I am too young for someone to start a conversation with, too introverted to reach out myself. I am content with my own company at least. It does not matter that I actually am older than them. In high school, I get louder though. I beat others to the punchline. “I know, I look like a child. Maybe when I graduate high school, I will look 14! But hey, that’s cancer for you.” When I first get my driver’s license, I drop off my sister at rock climbing and go to pick up Taco Bell for her. At the drive through, the cashier sees me pull up and begins to laugh. “Are you old enough to be driving without an adult in the passenger seat?” I ascent wearily. She laughs more and tells her friend to come over here and see the youngest looking 16-year-old that he will ever see. I turn red.   

For the first five years after treatment, that is when cancer is most likely to recur. My body was a ticking time bomb. Every abnormal pain is the beginning of terror. Does this stomachache mean I have cancer in my stomach? Every year, I get strep throat and the lymph nodes around my throat swell into imaginary tumors. Any moment, my body could betray me, leave me without treatment options. “We can’t give you chemo again. There is a maximum dosage and you already received it.” I am told the next best thing we can do is find it early though, if it does recur. So, they hold me down again. They do CT scans, MRIs. All donut-shaped tubes, but at least these machines don’t burn me. They pronate my legs so that my toes touch and heels sit apart and then they tape me still. My heart pounds, tells me to run so that they can’t hurt me again. I focus on what I read about how kidneys work while they scan me. The doctors are always more comfortable when I want to learn more. It is something to talk about, something other than the silence, the small talk. I pass the five-year mark. Then they focus on the long-term effects of the cancer, of the chemo. They check my heart. Social workers ask how I am doing in school. I tell them I want to be a pediatric oncologist, or later a cancer researcher. They tell me what a good thing it is. I see them relax. I am saying the right things, I am telling the good story, the right one, the one they want to hear.

Am I healthy? Am I sick? I am healthy enough to the sight that any physical failing must be a moral one. I am healed, but I hurt. My kidneys grew with me during puberty, scarred and disfigured as they are, so I will not need another kidney until I grow old. Regular menstrual cycles, no matter how physically painful, mean that I am fertile, at least for now. But why would I want my own kids anyways? With my biology, I offer a 50% chance of damnation. My heart passes my yearly screening exams though and my liver continues unscathed. “You are doing so well.” They tell me that every year I go to my annual Long-Term Cancer Survivor Clinic appointments. How can I disappoint them? The doctors and nurses and social workers did so much to make my treatment manageable. To distract me from the horrors of it.

But that is not fair to me. 

Just because I have good grades, just because I am involved in extracurriculars, just because I have a long-term relationship does not mean that I am healed. It does not mean that my cancer basically never happened, just an unfortunate start.

Cancer is not my origin story either. In the pursuit of telling a good, satisfying, palpable story, I did not get the freedom to explore multiple visions of my own future. There was one path and it stretched on for years, a funnel into the perfect ending to my cancer story. Instead of exploring my interests, I obsessed over cancer and was lauded for my work ethic. No one thought to suggest that this might be a coping mechanism to understand my trauma. Even when I disliked every job related to cancer that I tried. I liked cancer most when I was learning about it, analyzing it at a higher level and connecting it to myself. But how could I tell people I did not see myself in a cancer career anymore? Because I only ever was interested in understanding it to understand myself? Because of trauma? But I am healed, that is the way this story is supposed to go. It is not like I do not have the talent. In fact, I would be wasting it if I do not stay in science or in medicine. It does not matter that I grew a distaste for so many other parts of it. Deviations are unimaginable.

But it is imaginable. Kids with cancer can grow up. It is not our duty to make others comfortable with that idea. I do not owe anyone a tidy ending. My ability to heal from my cancer was delayed, not hastened by the story of the long-term cancer survivor. I am not healed! I am tired of pretending that I am. But I will make up for the lost time, now that I can understand that I still bear wounds from my trauma, now that I understand that my story and my trauma did not end when I “beat” cancer. I am freeing myself from the shackles of other’s expectations. I feel the catharsis that I never found in the last 15 years of my life. I can begin to reintegrate cancer into my life story, but finally on my own terms.

About the Author

Ashley Brown is a senior at Northeastern University with a double major in Biochemistry and Health Humanities with a minor in history. She is currently applying to master’s in history programs where she plans to study historical cases of health inequities.