A survivor of fibrosarcoma shares his journey through treatment and how he learned to build strength and confidence after the ordeal physically changed his face.
Being diagnosed with cancer at 20 wasn’t easy to absorb. But having a recurrence and facing a life with facial disfigurement was an entirely new situation I never would have anticipated or prepared for.
I had been living life on “easy street,” but suddenly had to take a major detour. I developed a malignant maxillary tumor that was pushing against my right nostril. It was an extremely rare fibrosarcoma, which the doctor told me was typically found in the arms, legs and pelvis areas, but not in the head and neck region.
Fortunately, the tumor had been diagnosed early, so the consensus was that clearing out the margins wouldn’t lead to disfigurement. And that’s what the initial result was.
Six months later, a nosebleed led me to the discovery of a new mass I saw inside the same nostril. Then my cheek began tingling. My cancer had recurred. Prescribing more surgery, my doctor warned that I might lose my eye, but his main concern was saving my life.
When I awoke from my 11-hour procedure, I found that my world would change forever. I learned that my doctor was forced to remove not only half my nose but also half of my upper lip, the muscle and bone from my right cheek, the shelf of my right eye, six teeth and part of my hard palate. I had a full thickness skin graft attached from my shoulder to fill the cavity that had been created on my face. I looked like the elephant man.
This wasn’t the way it was supposed to go. I was supposed to be cured and be able to return to pursue great opportunities ahead of me.
After the initial shock of it all, I was only surrounded by my immediate family. They were supportive, but I knew they were frightened, just like I was.
The margins were still not clear. More surgeries were required. I cried and wasn’t sure I’d be able to keep hope. But my doctor was confident he’d be able to remove any last remaining tumor cells and promised to make me “streetable” before I left the hospital. I thought maybe I’d just look like Tom Berenger in the movie “Platoon,” where he had a big scar on his cheek, left from a knife wound he’d received in battle. I could live with that.
But what I didn’t realize then was that this was my doctor’s way of preparing me for a life of disfigurement. After twenty-five more reconstructive procedures over a six-year span and the continued belief I’d get back to the “old Terry,” I was fortunate to meet someone who opened my eyes to the real problems I had.
It was during what would turn out to be my last procedure in a Chicago hospital that I met a beautiful woman receiving treatment for cervical cancer. We hit it off. I couldn’t understand what she found in me that was attractive. I still looked like the elephant man, or so I thought. We spent one long weekend together, but after hearing me ask — for the umpteenth time — how she felt about my looks, she laid into me. The bulk of my problem, she informed me, was not my physical appearance, but my emotional insecurity. Her honesty helped me realize that my internal scars were far more disfiguring than my physical ones on the outside ever were.
I began to realize how lucky I was that she had highlighted my greatest weakness. With a fresh perspective, I realized that surgery wasn’t something I could control. What I could control was focusing on rebuilding what was inside.
I began to focus on creating my own survival kit in a methodical way that I felt was doable for me. I began working out every day with weights, running five to six miles a day and got into the best shape of my life. Prayer and faith in the future became even more important. I focused on surrounding myself with positive-minded people I knew I could trust. I started going to group therapy sessions at the Cancer Support Community and practiced visualization and positive imaging. I wrote a memoir about my experience that led to a professional speaking career which built my confidence and self-esteem to new levels.
Each day I looked in the mirror, I saw my battle scars. But each day I saw those scars, I began to feel more and more proud of them, and over time, I realized that I was becoming a stronger person than I ever had been before. My confidence had blossomed again. The world was once again my oyster.
I remain cancer-free 36 years after treatment. I rarely notice people pointing or staring at me anymore. And they generally don’t notice me much because I carry myself with a newfound confidence I never had.
For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.