Melanoma Awareness Month: In My Darkest Time I Made the Best Friends

Guest blog from Kent Gilliam, stage IV melanoma survivor and a member of The Melahomies: 

What a whirlwind the past six years have been (which is an amazing understatement)! My story doesn’t differ much from other melanoma stories. It all started with my family getting ready for the trip of a lifetime to Hawaii and my wife noticing that life-changing spot. Mine was growing fast! It went from the size of a pin head to the size of a quarter in just a few weeks. And with my family history of melanoma – my maternal grandfather died from it in the 70s and my maternal uncles both caught it early – I knew exactly what it was without even a doctor involved yet. But yep… biopsy done and confirmed what I knew: it was melanoma. February 16, 2015 changed our family forever!  

After I picked myself up from under my desk (I work from home) and dried my eyes I called my wife and told her. That was the hardest thing I’ve ever done. You see, not only did I now have cancer, this was on the heels of losing my mom to colon cancer on May 9, 2013, and then my dad to esophageal cancer on October 28, 2014. Yep… just 17 months apart and yep… just four months prior to my diagnosis. So cancer had ravaged my family, and now I was in the crosshairs. But unfortunately, that February day cancer picked the wrong Gilliam to mess with! 

While our stories are often similar, they are also each unique in their own way. How our melanoma was found, where it was found, how and where it spread, how and where we were treated. What works for dozens of others may not work for you or vice versa. Melanoma is so different I’m surprised there’s not a book titled, “Melanoma is from Mars, Melanoma is from Venus” (I hope y’all get the reference).  

One thing for sure I’ve learned in my melanoma journey is that no matter what our story, the friendships are universal. It’s no secret that after the initial shock of the news wears off in friends, co-workers and loved ones upon hearing about a diagnosis, they seem to disappear back into the shadows. But you know who doesn’t disappear? Other melanoma warriors! We are a clingy bunch and we refuse to let anyone fight alone. In my darkest moments when I would be so deep within my own head that I couldn’t see out of my eyes, it was those other melanoma fighters who stepped in to fill the void left by those loved ones who simply could not deal with my cancer and the struggle I was going through. Now I have to say, I don’t resent those who disappeared. I was the son of two cancer fighters and I know how much that can weigh on someone. But those who have been on the non-patient side of cancer will all understand, it’s a helpless feeling and sometimes the best thing to do rather than risk saying or doing the wrong thing is simply to say/do nothing at all. It’s a safety mechanism for many.  

If there were things I wish I knew early in my melanoma fight it’s these: 

1. People won’t feel your melanoma is “real cancer.” We’ve heard it: “Oh, it’s only skin cancer? Well, that’s a relief!” You can even see it in celebrities where if they have colon cancer, breast cancer, leukemia or one of those where their cancer is mentioned by specific title, but when someone has melanoma they simply say, “they have cancer.” I wish someone would have told me that so little was known about melanoma and about how deadly it actually is. While I was scared to death of dying, I had family and friends who thought once I had “the mole” removed that I was good. NOPE! 
2. I wish I knew how the diagnosis, the surgeries and the treatments varied for so many (and this has only increased since I was diagnosed). In the early days of information seeking, I would drive myself crazy hearing about the paths different people had taken and the good and the bad outcomes. But most of all in this area I wish I would have known early that it wasn’t a death sentence like it had been for so many.  
3. I wish I had known about my amazing Facebook Group, “The Melahomies,” much sooner! While I was one of the earlier members and still 6 years later an active member of the group, I know that being a part of that group sooner would have saved me a whole lot of emotional struggle. They helped me understand how to research my options, what questions to ask, and what to expect all along the way. I don’t say this lightly when I say the members of that group literally saved my life. Maybe they didn’t create the drugs that did save my life, but they damn sure were the emotional “medicine” that got me through each and every day. And every warrior will tell you (and most if not all doctors too) the emotional fight is the first and primary one you have to win. 
4. I wish I would have known early how this is truly a “for life cancer.” Whether you’re diagnosed at 1A or 4 or somewhere in between, you’re in the “lifestyle” of melanoma for the rest of your life. On the bad side that means continued tests, scans and doctor visits, but on the bright side that means the friends you make are in your life through the end.  
5. I wish I had known about the great work of groups like the Melanoma Research Foundation earlier. I actually work with them now every day as a representative for one of their software vendors but didn’t realize until I started working with them just how little I knew about the actual work they do and the effort they put into every day to find a cure for melanoma. Whether it’s posting their #GetNaked hashtag or participating in one of their walk events, that team has one mission: save lives! Who can’t get behind that?  

If I could give just one tip to anyone who hears those words, “it’s melanoma,” I would tell everyone DO NOT think you can do this alone. Find a group. Whether it’s on Facebook or in your local community, just find one! Your spouse/partner won’t understand. Your kids won’t understand. Your uncle Joe who thinks he knows everything won’t understand. Nobody will understand what we go through but other melanoma warriors.     

How’s my story now? Well after being diagnosed 3A in 2015 and progressing to stage 4 in 2016 I did nearly 20 Keytruda treatments, but it wasn’t gaining much after nearly one year. I had several subcutaneous tumors that Keytruda simply wouldn’t kill. My surgeon found out about a new drug called TVEC (aka Imlygic). After only five injections into my tumors, in combo with Keytruda (yes, I have a great employer that demanded BCBS pay for both!) I reached NED on April 11, 2017. I still did Keytruda for another 13 months and did my last Keytruda treatment (#40) on Melanoma Monday which was May 7, 2018. I still do quarterly PET scans and monthly dermatology visits but currently I’m proud to say the worst is behind me.  

So to all of you new to the fight who may find this post, or even if you’ve been in the fight and need to hear something good… stay strong, stay positive, stay vigilant, stay in the fight! Much love to all! 

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