My Melanoma Story Part II: The Invisible Companion
In the introductory chapter to My Melanoma Story, I sought to express how each patient’s experience with cancer is different and highlight a few of the struggles I’ve faced in my battle with the “beast”.
During this second chapter, I am going to dig a little deeper and try to provide some insight as to what it has felt like for me to live with Stage IV melanoma cancer on a daily basis.
Everyone has their own internal struggles, regardless of whether they have cancer. I am no different. Long before I ever even imagined I would have cancer, I grappled with all sorts of issues. Would I ever meet the right girl? Would I ever succeed in my career? I could go on and on.
During down moments, these doubts would creep into my mind, cause unnecessary stress, and dampen my productivity and confidence. No matter how difficult those feelings were, however, they were fleeting. Thankfully, I did meet the right girl and was able to achieve some professional success. Of course, being human, I moved on to other worries that clouded my mind, but life always continued and eventually they faded away.
Then cancer happened. I didn’t entirely know how to react when I first received my melanoma diagnosis in the summer of 2016, but one thing I knew for sure … my life would never be the same.
Except it kind of was.
I had successful surgery to remove the cancerous mole from my shoulder, tests showed no evidence of it having spread and despite all of the anxiety, I felt like I was in the clear. I knew I would have to be monitored closely the rest of my life, but I basically moved on and didn’t think about cancer all that much.
It wasn’t until the cancer returned a few months later and I was diagnosed with Stage IV metastatic melanoma in early 2017 that life really did change. From the moment I received word from my doctor that the “beast” had come back, everything felt different.
That I got the news while sitting at the dinner table with my parents and wife following a celebration of my grandparents’ 75th anniversary only served to hammer home the reality even further. Seeing my entire family struggle to hold back tears and turn from glee to despair in an instant was profound and left a lasting impact.
It was from that moment on that everything changed. Despite a supportive family and medical team, I knew what I was facing. Thanks to the positivity of those around me, I was able to maintain a very optimistic outlook (and still do), but deep down I knew the seriousness of the situation.
I’d be forced to overcome some rather stiff odds if I wanted to live long enough to see my baby daughter in high school or witness my preschool son become an adult. As a lifelong sports fan with a passion for stats and as someone always very focused on the future, this was a daunting realization. My entire outlook on life would need to change.
Instead of constantly thinking about how to advance my career or planning the best way to secure my financial future, I needed to focus on survival. Forget about five year plans in terms of professional progress or retirement savings; the odds were now against me even being alive in five years.
This was one case where my inclination to perform statistical analysis would do me no good. It would be the things that can’t be measured like faith, love, toughness, and grit that would determine my fate.
My doctors set a great tone by always characterizing everything through the lens of me being fully recovered and healed, choosing to refrain from any negativity or discussion about survival rates. My wife backed that up by always reminding me to have a positive mindset and think of myself as one of the survivor success stories. Thanks to their encouragement, I’ve stuck to that approach and done my best to ignore all of the gloom and doom surrounding my diagnosis.
Since having surgery to remove the tumor along my hairline and beginning immunotherapy treatment in March, I’ve mostly gone about my life normally. I have a few more scars, am seen regularly scratching myself (side effect from the treatment), and have to go in every three weeks for a 30-minute IV treatment infusion; but for the most part my cancer is an afterthought.
Until it isn’t.
And that is why I refer to it as the invisible companion.
Sometimes it’s the inconsequential and simple things that bring it back to mind. I might be watching a TV show with my wife when a commercial pops on advertising my treatment drug (Keytruda). Or I might be going on an evening walk with my daughter when I see a neighborhood sign promoting a local American Cancer Society event and it dawns on me that I’m the patient now, not just the benefactor.
Sometimes it’s the serious and complex things that bring it back to mind. I’ll come across yet another news report of how President Trump and the republican congress are trying to repeal Obamacare and roll back protections for pre-existing conditions. As someone who gets his insurance through the exchanges, I can’t help but wonder if I’ll be able to afford continuing my treatment in 2018 given all of the political turmoil. Or I might be taking one of my kids to a new doctor and have to fill out that I have Stage IV cancer on the parental patient history form and go through the the entire explanation with the pediatrician.
Sometimes it’s the emotional and philosophical things that bring it back to mind. I’ll catch up with a “Melanoma Warriors” Facebook group that I’m a part of only to see that one or two of us have left this world behind and passed away that week. Or I might encounter a social media rant from someone I know complaining about their expensive insurance rates and saying how wrong it is that they (as healthy people) have to be penalized by being grouped in with sick people. The message couldn’t be any more clear that they believe it’s not their fault I was frail and got cancer, so why should they (as healthy people) be forced to subsidize my recovery? That attitude coming from people I know is difficult for me to accept. I am not asking them for a handout or any help whatsoever and I pay a lot more for my healthcare than they do even with the pre-existing condition protections.
Sometimes it’s the physical things that bring it back to mind. Could be the itching side effect. Might be the psoriasis flare-ups exacerbated by the treatment. Or the chance that at any moment either the cancer could start spreading again or more serious treatment side effects could emerge.
Such as what happened about a month ago when I started encountering sporadic stomach pains. Some days I feel no pain. Other days the pains are mild. But on certain days, the stomach pains are severe. I’ve been so blessed to never have stomach problems previously. But now I do. I’ve temporarily stopped treatment to figure out the cause (it’s likely a new side effect), but every time the pains occur it’s like the cancer is giving me a not-so-nice hello.
Sometimes it’s what I care about most in this world, my kids, that bring it back to mind. My son will ask me why I have so many ouchies or why I have to go to the doctor so much. Or my daughter will desperately want me to hold her, except I can’t because I’m recovering from a surgery or biopsy or because of my stomach pains. Those are the times I really wish the invisible companion could just leave me alone.
Whether I like it or not, however, cancer will always be a part of me. For as long as I live, which is hopefully at least another 50 years!, the invisible companion will be right there along for the ride. And while I may never fully come to grips with it, I’ve slowly begun to realize that it’s not all bad. This invisible companion does do some good. Quite a bit in fact.
I now appreciate each day a bit more. I now maintain a much healthier diet. I now do a better job of staying focused on the important things. I now have greater resilience. I now have more discipline. I now take more time to savor the moment. I now have more compassion. All of that is thanks to the invisible companion.
And with that, it’s now time to take care of the very visible companions. The baby girl has just woken up and is crying for attention in her crib and the boy is starting to rumble. I’ll check in later with the next chapter in My Melanoma Story in which I cover the medical aspect of my case.
Correction: There were a couple of typos in the final two paragraphs of the original copy of this post as I really was racing to finish so I could go check on the kids.
