I Am Not a Cancer Story

When I was diagnosed with Ewing Sarcoma almost ten years ago, I wasn’t surprised. You see, the film adaptation of The Fault In Our Stars was released a few months prior. I identified so strongly with the sardonic, this-is-not-a-pipe-cool-girl main character, Hazel-Grace, that my diagnosis felt meant to be — soon I’d down a cocktail angst-flavored drama to mourn a young adulthood interrupted. Add a dash of chemo crossed, fatalistic love, and I had a narrative that was just sweet enough to make the whole thing easier to swallow. Cancer was a plot point, an exciting twist, a challenge levied. Unfortunately, this absurd fantasy was not built to bear the weight of reality.

Here is what the books and the movies don’t tell you: cancer treatment does not come with a built-in love interest. It comes with an army of nurses, phlebotomists, surgeons, medical students, care partners, radiation techs, nuclear physicists, and doctors who become your new family for the duration of treatment. They are also your licensed clinical torture professionals, administering lifesaving treatment, with care and plenty of PPE. 

Sure, we all know that cancer patients lose their hair, and that chemo sucks. But they don’t tell you that you lose your eyebrows and eyelashes too; that your face rounds and swells from the gallons of steroids and saline; that you will look into the mirror and no longer recognize yourself; that you will feel like an imposter walking down the shampoo aisle as CVS.  

But hair grows back, and so eyebrows and eyelashes. And I knew that if I could simply endure for one more hour, one more day, one more round, one more surgery I would be done with this disease, and everything would go back to normal. Because I was under the impression that cancer is like the flu: it’s awful while you have it, but once you’ve beat it, it’s over.

It turns out being poisoned, cut up, and radiated for the better part of a year does not leave your body or mind in the same condition it was before. 

Despite being declared in remission, cancer found other ways to stick around. Multi-annual limb salvage surgeries and chronic fatigue brought me reeling back into the hospital for years after my diagnosis. To this day, I am still fucking terrified of dying, of how terrible a body can feel; still unable to move on from the journeys through the world of sickness and saline and florescent lights that punctuated my childhood and adolescents. 

As the promise of normalcy post treatment evaded me, I grew angry. So angry that I burned down the whole world in my head multiple times a day. I started with the hospital and ended with every single stranger who stared at my leg, every classmate who regarded me with pity, every person who continued to make me feel like the sick and dying person I tried to leave in a hospital bed far away. 

That anger made a home inside of my stomach and ate me alive. All I could do to temper the burning was to control myself: what I said and how I behaved, ensuring that it all fit within the narrative of the just fine, cancer warrior, brave soul, superhuman success story written by breast cancer charity runs and St. Jude’s commercials. I controlled how much I studied and the grades I got, knowing that while I physically failed to keep pace with those around me, I would surpass them with the power of my will and my mind. I also controlled everything I ate and drank—slowly at first—then all at once.

The more I controlled myself, the less energy I had for the anger. There was no time to be angry at the world when my mind was cemented on how to schedule my studies around a rare blood sugar spike, and how I was going to trick everyone into thinking I was fine. No, better than fine—an inspiration. A #warrior who is just so grateful to be alive, to have (most of) my limbs, to be “healthy” again. That concept of the inspirational, resilient cancer survivor left so little space for the suffering I continued to experience that I made myself small; So small that maybe there would finally be space for my grief to exist, and to be witnessed. 

By the time I made it to college, I remember feeling numb and strange—heart palpitating, skipping like weak little wingbeats; bruises forming in perfect circles underneath me where my skin was pressed between sit-bones and chairs; cold etching itself so deeply into my body that I thought I’d never stop shivering. And I didn’t care. I hoped, I wished for more than just a moment that it would simply stop. That I would go to sleep and leave it at that. 

It took years to make my way out of the bed-shaped grave I had been digging for myself. And, by some stroke of luck and the privilege of access to mental health care, I was able to put down the proverbial shovel for long enough to find myself above ground. 

***

For adolescents and young adults, suicide is the second leading cause of death while cancer remains the leading disease-related cause of death. And you would think that the statistical unlikeliness of my continued existence would make me believe in some greater meaning behind my body’s stubborn persistence—that perhaps I was “meant to be here.” 

Unfortunately, I don’t believe that we are destined for any given outcome in life. But I do believe that I owe it to the countless who have died and will die from cancer, from mental illnesses, from circumstances that are ultimately outside of their control to use what agency we do have to help each other, to challenge the systems that perpetrate violence against the most vulnerable among us. Learning the names of these forms of violence—racism, sexism, homophobia, transphobia, classism, and ableism—allowed me to separate my personal failures and imperfections from systemic ones. 

This means that ten years after my diagnosis, coping with surviving cancer—the fear, the anger, the helplessness—has meant meeting myself where I am instead of chasing some imaginary, cured version of myself. More so, it has also meant framing my experiences as tools that allow me to be in community with people who need that connection, that beautiful sort of interdependence, the most. Our society values independence so much that it has become easier than ever to forget that we need each other to survive this beautiful hellscape of a reality. Nobody survives cancer, or this life alone. 

Our fate may largely be written in our genes and in histories and systems that are beyond our grasp. But I like to hope that we are not out of reach to each other. And that is the kind of medicine I take and give to myself every day to survive, to thrive, to live after cancer and beyond it. 

The artwork in the cover photo is original art by the author.

Link to Mafalda’s portfolio: https://mafaldaalvensleben.myportfolio.com/