A Patient’s Perspective during Oral, Head and Neck Cancer Awareness Week

By Jessica Tar, patient advocate

2010 was truly a year that delivered the worst to my life. In April, the unexpected death of my father, a non-smoker, from lung cancer, revealed the mystery of this disease and at times, its unidentifiable origins. My family and I had no idea of how he had developed such an aggressive disease, taking his life only four months after being diagnosed. Unbelievably, my shock was to be exceeded just nine months after my father’s death when I received the news of my own diagnosis of squamous cell carcinoma.

Seated in the office of my oral surgeon, the jolt and despair were instantaneous. The results of the biopsy my doctor had performed the month before were in, and the cells located on the side of my tongue were definitively malignant. This happened a year after I noticed a painful spot in my mouth, an area that seemed to wax and wane with sensitivity depending on what foods I ate and the degree to which I talked. That October, I surrendered to a pang of worry and made a phone call to the trusted surgeon that had removed my wisdom teeth nine years earlier.

The small sore on my tongue that was present during the time when my dad was alive, was connected with an oral cancer diagnosis. I pleaded out loud over this because on one of many levels, it was absurd. Immediately, I associated this disease with tobacco use, and I had never smoked in my life. At 28 and living in New Jersey, I was busier than ever, teaching swimming lessons, studying art in school, singing the national anthem at local events and I had proudly just completed acting work on my second short film in six months. Despite my sorrowful year, I was succeeding in all of the areas I had aspirations in. I racked my brain, mulling over how I could have taken my good health for granted in all the bustle of the year.

I waited until the end of the day to tell my husband, TJ. My mother and sisters were in such a state of despair over the loss of my father that I couldn’t believe I was tasked with burdening them further. The result of my lousy news to all parties was emotional chaos. I told myself and everyone around me that I was mindfully strong and assumed a responsibility to be both proactive and fanatical when it came to my treatment plan.

I was tested and scanned and talked to every medical professional I had access to. I digested and parsed out a lot of advice. My search for an oncologic surgeon was far and wide, extending to Manhattan and Cleveland. I confidently decided on a specialist in New York and from there on out I would frequently be in and out of the city, not for auditions or filming, but instead, for my health, for my life.

Introspectively, I prepared for my impending surgery by putting my ego on overdrive and telling my family, my best friend and my mother-in-law (a stationary aficionado) that I didn’t want so much as a “get-well” card. I was going to be fine and back at it in no time. (Right?). Truthfully, I was so afraid that I knew a glance at sickness-related materials bearing my name might crash my game face. They humored me and in mid-January I spent five quiet days in the hospital with nothing but a smiley faced balloon that waved in the breeze of the heating vent at night. I stuffed it into the closet in my room and commenced my recovery from a partial glossectomy (removal of the tongue) and neck dissection, a secondary procedure necessary due to the proximity of the carcinoma to my lymph nodes, which can be a superhighway for cancer cells.

My surgery was followed by a welcome ruling of turtlenecks and speech therapy. A few weeks later, the news I had been holding out all hope for was revealed. My oral surgery was successful and the cancer had not spread elsewhere within my body. For myself, the real impact of having cancer was the mental portion, which was greater than any physical repercussion of my experience. I had been depressed, especially when I related my position to singing or just trying to talk to the cashier at the supermarket in that first year. My tongue, as I knew it, was not ever going to be the same for the rest of my life. I could not let what happened compromise my mind; my state of living, despite the reminder with every word I spoke.

What I endured wasn’t nothing, it was something; a way to stay alive and healthy on the planet. It is this survivalist mentality that drives me forward as a mother to my children, my life force; as a wife to my best friend and husband, TJ; and now as a patient advocate. It is this month during Oral, Head and Neck Cancer Awareness Week® (OHANCAW®) that I dedicate this perspective of strength to the patients and families of head and neck oncology. For no matter what changes our bodies withstand over the course of our lives, we must move forward as survivors and actively participate in the pursuit of our healthiest selves.

Jessica Tar lives in New Jersey with her husband Thomas Tar, their three daughters and two rescued dogs. She is a national spokesperson for the Head and Neck Cancer Alliance and was host of the 2015 IFHNOS (International Federation of Head and Neck Oncologic Societies) Opening Ceremony in New York City.