Ken Billett

A decision to have a strange-looking mole biopsied probably saved my life. Read more about the twists and turns in my melanoma journey, which continues today.

 

My personal journey with melanoma began long before my first 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. 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 Saturdays 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 late 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 1998 saved my life. It also started the next phase of my journey. From 1998 to 2015 I 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. (There is still a small divot.) At this point, I routinely visited dermatologists and general surgeons. I took precautions - sunscreen and wearing a hat - but by then the damage to my skin was done.

In late 2011, 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 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.

The current phase of my melanoma journey began in late July 2013 when a PET scan revealed that melanoma had spread to my lungs. The likely source was the malignant tumor removed in 2011. The doctors 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 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 am fortunate. Following my 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.

I am also fortunate that my melanoma is somewhat atypical. Following my 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 rate mutation, however, has responded well to an oral chemotherapy drug called Gleevec. In my case, some of my tumors began to shrink after I started taking Gleevec.

It sounds strange to say that I am fortunate, but I am. It is 2018 and I am still here to continue my journey. I have used my circumstances to reach-out to others with this dreadful disease and to volunteer my time with organizations such as the Melanoma Research Foundation (MRF). I maintain a blog that details my current journey (from 2013 to the present): In Difficulty Lies Opportunity http://difficultyliesopportunity.blogspot.com/

Finally, I am fortunate that I have family and friends to help me along this journey.

Thu, 2018-11-29