“You’re going to die. This disease is going to get you.” Direct quote verbatim from my oncologist at Dana Farber. Bedside manner isn’t his strongest trait but it was his way of preparing me for the worst. My response to his statement wasn’t very reserved either. More on that later. My new reality was that I was a 44-year-old cancer patient diagnosed with Stage 3B Melanoma and I had to deal with my mortality far sooner than I ever anticipated. I wasn’t so concerned for myself but worried about letting down my children, my parents, and my wife by not being there.
Six weeks prior, in the shower, I found a baseball sized lump under my left arm. Several extensive tests and two lymph node dissection surgeries later, I was to begin treatment at Lahey Clinic using a drug called Interferon Alpha. At the time, this was the only FDA approved treatment for Stage 3 (late stage) Melanoma. It had been around since the 70’s, had horrible side effects, and had a very low success rate; single digits. Credit to my surgeon and the oncology department at Lahey, they advised me to go out and search for other hospitals offering a clinical trial for Stage 3 patients employing new immunotherapy options.
The first call in my search was to Dana Farber. That’s who you call when you live in this part of the world. I had an appointment the following day; August 27, 2015. The trial was a double-blind study using either Ipilimumab (Ipi) or Nivolumab (Nivo). This trial was only open for 48 hours enlisting 800 patients worldwide at select facilities. The trial was closing within hours of my visit. Use whatever low probability cliche comes to mind. Winning the lottery. Struck by lightning. The chances of this happening were almost nonexistent. It’s hard for me to imagine someone wasn’t looking out for me. Employing the word lucky would insult whatever steered me to that place on that day. I am truly blessed. My treatment would begin in the coming weeks.
Growing up we lived outside. The home we live in backed up to conservation land that we could get lost in for hours. Riding our bikes from one end of the town to the other was a normal day and it usually ended with the neighborhood kids jumping in our pool to clean off the dirt we had accumulated during our ventures. We didn’t know sunscreen existed. Red cheeks and a bright red neck were part of our regular Summer look.
“Have you ever had a sun burn to blister?” ask one of the initial dermatologists I visited shortly after my diagnosis. Yes. I had fallen asleep in the sun one summer next to the pool at about 8 years old. I distinctly remember the pain as I was forced to sleep on my stomach for about 2 weeks. I learned that extreme events like that provide a gateway for cell mutation and open the door for a future melanoma diagnosis.
How did I go straight to Stage 3? I asked. What happened to Stage 1 and 2? Did I miss something? Did I ignore my body? Turns out, I didn’t. I fell into another isolated category of only 10% of patients that never had an initial mole or topical marker that led to a more serious diagnosis. When I do things, I do
them right.
I just couldn’t make sense of any of it. Yes, I had always been active outside. I always played sports and in recent years I coached sports but I wouldn’t consider myself a sun worshiper. Then it dawned on me. For more than 20 years, I drove to work southbound in the morning with the sun on my left-hand side and home in the afternoon with the sun on my left-hand side. Most days that meant 3-4 hours of direct exposure just from commuting. I always had what I called my “driving arm” because it was always darker than the rest of my body. Statistics show slightly more occurrences on the left side vs right in males. Car side windows are good at blocking UVB rays but not UVA. It will be hard to convince me that driving isn’t the cause of my cancer.
I found out later that the trial I was on was using Ipi; Ipilimumab. Most Fridays for the following year, you could find me at Dana Farber in the oncology department receiving treatment. They were great. They set me up in my own room so I could work. Many of my colleagues and customers had no idea as I
conducted my normal workday tethered to an IV. Almost one year to the day from my original discovery, I found another lump in the same region. I was deflated. I was instantly removed from the trial as it was deemed ineffective. A third much more aggressive surgery followed and any confidence I had in beating this was gone.
My oncologist approached me about another trial which involved a personalized vaccine using my recently harvested cancer cells in combination with immunotherapy. I agreed as I had nothing to lose. I still trusted him explicitly.
Months had past and I heard nothing about the start of this trial. The delayed start wasn’t due to procrastination. They couldn’t find any live cancer cells. What? They found millions of dead cells. The original immunotherapy treatment was working. To participate in the new trial, they had to go back to my original samples from my first two surgeries a year prior. Through the miracle of medicine & the amazing minds at Dana Farber, 7 years later, I’m still here.
My family and I are still very active outdoors. We go boating & I vacation at the beach but my attire is appropriate for my reality. I’m convinced that wide brim hats and long-sleeved UPF shirts will catch on eventually. The windows on every vehicle I’ve owned are tinted to block UV rays and you can often find me on my pulpit preaching that the sun is not your friend. I absolutely feel that my diagnosis and my cancer was preventable if I were educated and had a greater focus on sun safety. The “it will never happen to me” mentality certainly applied.
Moments after I was told “You’re going to die”, my oncologist left the room and several of his staff & colleagues remained. In case your curious, my NSFW response I referenced earlier was “WTF was that?” I’ll never forget the conversation that followed with one of the remaining doctors. “We are so close to making this a chronic disease and not a death sentence. If this doesn’t work. We have something else and then something else. The longer you go the more we’ll have. We’re that close.”
I can’t say it enough. I’m still here. Despite the prediction, this disease will not get me. I wasn’t always sure of that. I am today. In case you’re wondering, I have a wonderful relationship with my oncologist despite our start. Thank God he’s a much better scientist than he is a predictor of future events.
