Skin Diaries

25-Year Battle With Melanoma Leaves Warrior ‘Fortunate’

My personal journey with melanoma began long before my first skin cancer diagnosis. I grew up near the Gulf Coast beaches of Florida in the 1960s and 1970s. A time when sun protection consisted of a floppy hat, a white t-shirt, and suntan lotion. Several trips to the beach ended with red, raw shoulders and a burned nose. I have light-brown hair, blue eyes, and a seemingly infinite number of freckles, moles, and skin blemishes. This places me in the high-risk category for skin cancer. Several years ago, a dermatologist told me that with my skin type, I should have grown up in Minnesota, not in Florida.

In the 1980s and early 90s, I continued to abuse my skin. Like many young people in those days, I worshipped the sun and spent too many weekends out by the pool baking in the early afternoon heat. I never used enough sunscreen and, when I did use it, I certainly never thought about re-application. In addition, I fell into the trap of occasionally using tanning beds to get a base tan.

In the mid-1990s, I decided to have a mole on my right shoulder checked out. A biopsy revealed that I had melanoma in situ. That decision in 1995 probably saved my life. It also started the next phase of my journey. From 1995 to today, I’ve had 8 melanomas – ranging from in situ to Stages I and II – diagnosed and removed. I also had a basal cell carcinoma removed from my upper left cheek. (You can still see the small divot in my face.) For the next ten or so years, I routinely visited dermatologists and general surgeons. I took precautions – putting on sunscreen and wearing a hat – but by then the damage to my skin was done.

A major twist in my journey occurred in 2011 when a previously biopsied lesion tested malignant, and I underwent immediate surgery to remove a Stage IIC tumor along with a tennis ball-sized area of surrounding tissue from my upper back. The surgery included an extensive skin graft and the removal of several sentinel lymph nodes from my neck (which, thankfully, were clear). I was in physical therapy for 6 months, and I still have stiffness in my back and limited range of motion. Years later, the hole in my back – as I call it – is very ugly and the scar tissue still tender. As my plastic surgeon once joked, I wasn’t going shirtless to the beach any longer.

On July 24th, 2013, another major turn in my journey happened when a PET scan revealed that melanoma had spread to my lungs. The likely source of the metastases was the malignant tumor removed in 2011. The oncologists believed that a tiny bit of melanoma escaped from the primary site via my bloodstream. I was told that if the cancer didn’t respond to treatment that I would likely die in 9 to 12 months. Naturally, I was in shock as I left the clinic that day. It was completely surreal.

Even with a metastatic melanoma diagnosis, however, I was fortunate. Following my 2011 surgery, protocol dictated that I would be scanned every three to six months for the rest of my life. So, I now have a permanent oncologist along with new dermatologists who understand my circumstances and are diligent in their skin exams. Anything in question is immediately biopsied.

A final twist to my journey is based on simple genetics. My metastatic melanoma is somewhat atypical. Following the 2013 diagnosis, two separate labs confirmed that my cancer has a c-Kit mutation, which is found in less than 7 percent of all melanoma patients. This rare mutation, however, responds well to a specific oral chemotherapy drug. Once I began taking the drug, some of my tumors actually shrank.

It sounds strange to say that I am fortunate, but I am. It is 2019 and I am still here to continue this journey. The metastases in my lungs remain relatively small and stable. In the past six years, I’ve been able to watch both of my children graduate from high school and college. My wife and I travel extensively and, yes, we go to the beach or the mountains every year. I still garden every spring. I will not let skin cancer keep from doing the things I love!

Finally, I use my circumstances to reach out to others with this dreadful disease and to advocate for more skin cancer research. In addition, I volunteer my time with national skin cancer organizations and local cancer charities. I maintain a blog that details my journey (from 2013 to the present): In Difficulty Lies Opportunity. My present journey continues with curves and bumps, but I now appreciate the small things in life that truly mean the most.

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July 31, 2019
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3 Comments

  • Keisha Moore-Alston

    A road filled with up and downs but you’re still here!!!! What an inspiring story!! Just so you know, you’re awesome Ken. That is all.

    • Ken Billett

      Thanks, Keisha! Really appreciate it.

  • Eric Levy

    Stay strong…! I’m on 5 and counting. Three on my lip requiring wide excisions and plastic surgery two separate times . Fortunately I still have a smile, and I am here to smile..!!! Skin Cancer screening every 2 months, just because I’m a bit paranoid and want to keep that smile. Best of luck to you.

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