A Little History
Last updated November 2018
For those of you who would like to know the background of my journey with melanoma, here’s a “little history lesson.” It might help you better understand my mindset as I continue to deal with my current situation.
I’ve always had fair skin with a lot of freckles and moles. Unfortunately, my type of skin, along with blue eyes and brown hair puts me at extreme risk for skin cancer.
I saw a flyer in the paper that talked about a free cancer screening at Methodist Hospital in Midtown on Union Avenue. Previously, I had noticed that one of my moles (one that is not raised up) had changed quite a bit. So I decided to do the screening. (Even my internal medicine doctor had warned me about sun exposure and to make sure to get checked out every once in awhile.)
I saw the doctor and showed him the spot on my upper right shoulder (it was right where the upper arm bone meets the shoulder socket. He almost immediately reacted by insisting on performing a biopsy. Sure enough, the results came back positive for melanoma. The actual diagnosis was “melanoma in situ,” which means the melanoma has not spread and, more or less, is only in the surface area of the skin. I had surgery to remove the malignant spot with a nice two-inch scar to show for it. The scar has now faded so much, I don’t really even notice it.
Present Day (November 2018)
Note: I decided earlier this month to revise this section of the page into a summary of my melanoma journey. A version of this summary, which includes 1995, was recently posted on the Melanoma Research Foundation’s website under “Patient Stories.” Enjoy.
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 1995 saved my life. It also started the next phase of my journey. From 1995 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 melanoma and cancer organizations.
Finally, I am fortunate that I have family and friends to help me along this journey.