My Scar, My Story

At 19, melanoma left a lime-sized hole in the back of my head. That scar tells a story I spent decades stashing away.

“Since you are already here,” my mother urged, “why don’t you also have the doctor look at that thing you found on the back of your head?” I was 19 and the picture of health. But during the third week of winter break, I went to the doctor for a sinus infection.

That thing was a plump, black mole the size of a dried cranberry. I’d found it brushing my hair. Being it was pre-Internet 1992, I had no way to Google comparison pics or read about Moles, Freckles, and Skin Tags on WebMD. Annoyed with my mother for even bringing it up, I parted my hair and braced for the snip, assured that the biopsy would only be precautionary. Within a few days I was back on campus where I belonged.

To say I was shocked when my parents drove to Central New York in the middle of January is an understatement. The report for my biopsy came back with a diagnosis of malignant melanoma, Stage III, possibly IV, and they told me to pack my bags. “I feel fine!” I snapped. It didn’t matter. I was forced to take a medical leave of absence, abruptly putting all my dreams that came with being a first-generation college student in her second year on hold. I had 24-hours to gather all of my things and I dropped them into the trunk of my parents’ car with a thud.

Time stood still in a blur of tests and scans and second opinions, and the surgical oncologist we finally selected urgently scheduled the surgery in hopes to fight off the spread. Surgery included removing the nodular tumor, part of my occipital bone, and a skin graft to cover the wide excision that left a lime-sized hole at the base of my skull.

Unsure if the cancer had metastasized, the treatment options were limited in 1992 and chemotherapy was arranged to start post-surgery. But we soon learned about two progressive clinical trials, one for an interferon immunotherapy where patients received regular injections, and one for what the doctors were calling a melanoma vaccine, perhaps better known to cancer researchers as Human high molecular weight melanoma-associated antigen (HMW-MAA). In this particular trial, monoclonal antibodies extracted from mice were being injected into just a few dozen advanced melanoma patients. That was over thirty years ago. And I was one of those patients.

Being accepted into one clinical trial to treat a life-threatening disease is like winning the lottery, but being in two seemed like a made-for-TV movie. As a naive young adult, I knew cancer was serious, but I never grasped how vulnerable I really was until I was in my 40s. I found out that scalp/neck lesions had lower 5-year survival than any other anatomic site. Worse, my melanoma was hidden on my scalp beneath thick auburn hair and determined to be caused by gene mutations, not sun exposure. The odds kept stacking: Anything thicker than 4.00 mm had a poor prognosis (mine was 8.0 mm) and nodular melanomas, which mine was, had the poorest 5-year survival of them all. It makes complete sense to me now why my oncologists were willing to try everything and the kitchen sink.

Determined to get back to the freedom of being the me I was before I was sideswiped by illness, I rolled up my sleeves and did what I had to do. For the next six months, my boyfriend–who also took the semester off to be with me–drove me 130 miles round trip for the vaccine shots and the same distance at least two-three times a week for bloodwork to test my antibody titers, blood cell counts and organ functions. It was exhausting, but it offered us a ray of hope that we could still marry one day, start a family, and share a future. Regular appointments in Manhattan added miles to the odometer too.

When the immunization shots began to cause injection site reactions that separated the skin from my muscle, leaving a few dime and nickel-sized holes in each of my shoulders that oozed with goop until they finally healed from the inside out, well, that optimistic light began to flicker. With time, my hair started to fall out in clumps, too, either from the regular interferon injections my mother was giving me at home or the vaccine, the doctors were not sure. That would be harrowing for any person, but as a young woman, it all deepened the blow. I managed to survive the physical toll of surgery and months of treatment, yes, but the emotional sum almost ended it all.

I was desperate to put as much space as possible between that trauma and the rest of my life and thought I had to erase that chapter entirely in order to move on and never look back. But reflecting on the recent news from the American Cancer Society’s newest report reminded me that among all of the things I have accomplished, I was once a young woman with cancer too, desperate for a treatment to work and for everything to turn out okay. It has finally dawned on me that, even after continuously interacting with the world in every new chapter of my life, I never truly recognized that surviving cancer so many years ago could still have an enormous impact on me decades later. Did my coming-of-age cancer still affect me?

When memories of who I was at nineteen surface, I’m struck by how much of her still lives in me. She learned small, practiced rituals of concealment—gathering strands of hair from behind her ears to disguise the bald spot on the back of her head each time she pulled it up. I still reach for those same strands without thinking. She chose shirts with sleeves just long enough to hide the constellation of scars left by vaccine shots on her shoulders. I still scan mirrors for that coverage. And the skin graft scar she tugged her swimsuit down to hide all those years ago? It never went anywhere.

But how did it never occur to me until this moment that the emotional trauma I endured was even bigger than every blemish I still have on my 52-year-old body? And while I am eternally grateful to be a decades-long melanoma survivor (and married to that boyfriend with four kids!), I have come to acknowledge that every time I worked to cover up my cancer scars so that no one can see them, I was stashing that old trauma beneath metal hairpins and bathing suit bottoms at the same time too.

When I was first diagnosed with melanoma, there was no community of patients to lean on, no Instagram accounts or online support groups to share experiences with. I felt isolated in my struggle, unsure of what others had gone through or how they coped. Now, seeing vibrant melanoma communities online, where patients and survivors share their stories, struggles, and victories, I realize just how powerful and healing it would have been to connect with others back then. The support, advice, and solidarity from those who truly understand make all the difference in navigating both the physical and emotional challenges of cancer.

“Stories and connections can be such incredible medicine,” the administrator of the Stop Melanoma Movement Instagram account wrote when she thanked me for recently submitting my profile. My physical wounds healed long ago, but I know now that scars—both physical and emotional—are stories our bodies tell, even when we’d rather they remain silent.

For years, I buried mine under borrowed hair, swim skorts, and denial, hoping to move on unscathed. But this meaningful moment has taught me one thing: healing isn’t about erasing the past; it’s about integration. It’s about weaving the pain and resilience of our past into the fabric of who we are today.

As I reflect back at that scared but determined 19-year-old and the decades that followed, I see not just a survivor, but someone who dared to hope, to fight, and to live fully despite so much uncertainty. I want to honor her journey. Because her story is my story too.