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.