My Melanoma Story Part I

There are so many ways to start this story. A cancer diagnosis, particularly a Stage IV cancer diagnosis, is not simple. It affects you in so many different ways that I could begin this story from any number of angles. The introduction I’ve decided to give for my story (which will not include rehashing the history of my diagnosis) is very unlikely to be the same introduction another cancer patient would decide to give, and that’s important to point out.

While everyone recognizes that “The Big C” is extremely serious, there remains a tremendous amount of ignorance about the condition among the general public. First of all, there are a LOT of cancer types and they are all unique. Even within the same cancer types, there are a great deal of differences. Just as no two people are the same, no two cancer patients have exactly the same experiences, even if they have the same type of cancer.

For example, I suffer from Stage IV melanoma cancer. It is typically the most aggressive form of skin cancer and one of the most lethal types of any cancer. It’s also one of the most complicated. While it is a skin cancer, it can spread via the lymph nodes to organs, the brain, the spine, just about anywhere. Once it starts to spread, it means Pandora’s Box has been opened as my surgeon explained it to me.

One of the interesting things about melanoma, however, is that it doesn’t necessarily bring any symptoms until the very late stages. There’s a very good chance you could never tell if someone has metastatic melanoma, because there’s a good chance they don’t feel any symptoms. That’s the category I fall into. I have still yet to feel any symptoms aside from some pain at the site of my since-removed tumors.

The fact I have yet to feel any symptoms forms the basis of how I have chosen to begin my story. Not feeling symptoms has been both an amazing blessing and very confusing at the same time. Though I mostly ignore the survival rates because they are so generalized and don’t really mean anything for any individual patient, it’s impossible to completely dismiss them. And they are quite bleak. While massive medical advancements have been made in recent years with the emergence of immunotherapy and other targeted treatments, less than 50 percent of Stage IV melanoma patients even make it past two years. The numbers drop even further once you get out to 5 and 10 years.

Put all that together and it has left me very bewildered at times. Here I am feeling healthy and fit, yet inside me there are these mutated cells that pose me grave danger. My father has multiple sclerosis and can barely walk or get out of bed at times. My mother has diabetes and severe neuropathy and struggles to walk for more than a few minutes. Neither of them face significant odds of dying in the next couple years, however. I have no such problems and appear to be a healthy man in his mid-30s, yet my condition is a matter of life and death. It’s very strange and often difficult to mentally process those facts.

Thanks to the emergence of the immunotherapy I referenced earlier, I am on the road to recovery. I’ve had 7 infusions of a new drug called Keytruda so far and I’m responding. A swollen lymph node on the front of my neck, a small pea-sized lump on the back of my neck, and a swollen lymph node in my armpit have all disappeared within the first 4 months of treatment. I’ve also been able to avoid most the serious side effects that some Keytruda patients encounter.

The only thing I’ve had to deal with is an aggravation of my psoriasis, which has led to severe dry skin on my palms and feet, itchiness on my arms and legs, and occasional cracking/cutting open of the skin on my hands and feet due to the extreme skin dryness. This is certainly unpleasant, but mostly a relatively minor nuisance.

I have a 1-year-old daughter and a 5-year-old son. I still work full-time. I’ve completely changed my diet and now almost exclusively eat organic and freshly prepared foods, with a focus on fruits, vegetables, nuts, and seeds. Add all that up and it makes for a life that is full of blessings, but also quite challenging. Life would be difficult right now regardless of cancer, due to all those serious responsibilities.

And therein lies my conundrum. When I feel really tired is it because I’m drained after a long day at work? Is it because the kids have worn me out? Is it because I didn’t sleep great? Is it because I’m stressed about a big new hospital bill I have to pay? Is it because I didn’t drink enough water or eat enough? OR Is it because I’m suddenly starting to feel more side effects from Keytruda? OR WORSE Is it because the cancer is advancing and making me sick?

The answer is I just don’t know. Feeling tired LIKELY has nothing to do with Keytruda side effects or the cancer, but I just really don’t know. And honestly, I’m mostly fine with that. It doesn’t bother me all that much because I know I’m doing all I can to get better by receiving all my scheduled treatments, religiously following my diet, taking my approved supplements, getting my sleep, and most importantly praying to Jesus to heal me.

The hard part for me is the constant internal battle I wage to avoid using cancer as an excuse. It’s so tempting to take the easy way out and know I have this built-in excuse to justify it.

I’ve had a tough day at work and don’t feel like helping watch the kids when I get home? I could tell my incredible wife that it’s gotta be treatment side effects, ignore the screaming kids running all over the house, and go retreat to my bedroom and take a lengthy break.

I’ve got some work task I really don’t feel like doing? I could just blame the cancer and say I’m not feeling great and take a sick day.

I’ve got chores to help out with at home? I could just say the dry skin on my hands and feet feel really uncomfortable and I can’t do the chores.

And so on and so on.

Staying disciplined enough that I continue to do things I don’t feel like doing, even though I have a ready-made (and somewhat justifiable) excuse to not do those things is one of the toughest things I confront as a Stage IV melanoma cancer patient.

I know I shouldn’t leave my wife in the lurch and use cancer to shirk my many responsibilities, but it’s so darn tempting in those moments when the kids are screaming, the dirty diapers are stinking, and the laundry is overflowing.

My family lives across the country where I grew up and my wife’s family, while mostly local, is busy with their own lives and has limited ability to help out too much aside from my mother-in-law coming to stay with us for a couple days when I have treatments. So I really am hanging my amazing wife out to dry if I did fall into the temptation and use my cancer as an excuse not to fulfill my many work, family, and home obligations.

And that’s why I (mostly) push through when I feel tired. Why I (mostly) persevere when I feel stressed. Why I (mostly) continue on when I feel itchy and uncomfortable. I’m FAR from perfect, but I’m proud of how I’ve been able to (mostly) avoid that temptation to use cancer as an excuse and ditch my responsibilities. It’s not easy, though. It’s an everyday battle. And it’s how I’ve chosen to start telling My Melanoma Story.

If you found this interesting, many more chapters are to come. Stay tuned.