Per usual, I’ve been thinking about this topic for quite some time while figuring out the best way to express it. Despite how well everything is going with my treatment, there is still a lot that is unknown about my future. To be totally honest, there isn’t a lot of data in the world about people like me and what happens to us long term. One thing is for certain though, the Internet isn’t very kind about laying it all out there for me.
I want to talk about some of the scary things I have learned on the Internet about my disease. I know what you’re going to say – “Stay off the internet! It’s full of lies!” and while that’s not entirely false, don’t pretend like you’ve never turned to Google when something medical-related has come up. We’re all guilty of falling down the Google rabbit hole and reading things we know we shouldn’t. Thankfully, I’m not quite the hypochondriac I used to be (Mom could tell you some really great stories about that) but there is some scary shit out there about Metastatic Cancer – specifically Melanoma. It’s pretty easy to fall into denial be like “Yeah, that stuff doesn’t apply to me! I’m totally different!” but studies will tell you otherwise. And that’s a reality I’m just starting to uncover.
Let me break it down for you. For those that are unfamiliar, Metastatic Cancer is equivalent and/or synonymous to Stage 4. This is the most advanced stage of cancer – there is no Stage 5 or 6 or whatever. At this stage, the cancer has spread from the lymph nodes to other (likely very) important organs. Anyone who knows anything about cancer knows the gravity of the term “Stage 4” and that it often comes with very short timeline. Adding another layer to the diagnosis of “brain mets” makes the conversation much, much scarier.
You read things about Melanoma being the most curable form of cancer if caught early enough. Assuming it doesn’t spread, and it’s localized to the skin, there’s a 95% cure rate. I’d take that bet any day. But, Melanoma is one of the fastest growing cancers and once spread, is easily one of the deadliest. Historically, it’s been very hard to treat Stage 4 Melanoma, if not near impossible. Once it reaches Stage 4, the 5-year survival rate is about 15-20%. That means that 80-85% of people with stage 4 Melanoma won’t be alive 5 years after diagnosis. Furthermore, patients with brain mets have an even poorer prognosis: 4-5 months. I’m 29-f*cking-years old and the Internet is telling me that there is an 80-85% chance I won’t make it into my mid-30’s. Hell, according to Google, I’d be lucky to make it past 4-5 months. (Spoiler alert, yesterday marks 5 months since my brain radiation treatment).
To be totally honest, I didn’t let myself think about these things when I was first diagnosed. I stayed off Google and refused to type “stage 4 melanoma survival rates” into the search engine. I had plenty of other things to keep me occupied and I didn’t let my mind wander. Spoiler alert, when you do Google, this is what you see.
"According to the American Cancer Society, the 5-year survival rate for stage 4 melanoma is 15–20 percent. This means that an estimated 15–20 percent of people with stage 4 melanoma will be alive 5 years after diagnosis.”
“Stage 4 melanoma is often hard to cure with current treatments.”
So no, I don’t “just" have skin cancer. Just because I put on a brave face and muster a positive attitude about all this doesn’t make my situation any less serious or my odds any greater. I think often people have hard time understanding the gravity of the situation because I’m so light-hearted about it all. While I may cope with things by making jokes about it (thanks again, Mom) I can’t help but occasionally let my mind go there. How could I not?!
What the Internet doesn’t know is what survival rates look like for patients with my treatment plan. (I bet you were wondering where the silver lining was 😉 – you should know by now there is always a silver lining!) The advancement in research and treatment options for Metastatic Melanoma is increasing my odds. In 2011, (just a short 7 years ago) the Immunotherapy drug Ipilimumab was introduced – improving survival rates drastically. In 2016, (YEP! ONLY 3 YEARS AGO) the FDA approved administering the two immunotherapy drugs in combination (the first infusion I had of Ipi/Nivo that jump-started my immune system) which nearly doubled survival rates. My Dad has been saying throughout this process that it feels like we’re on the verge of experimentation. And it’s true! Just two years before I was diagnosed, my treatment plan did not exist.
So where was I going with all this? Well, today was a stressful day at work. I got home, jumped on my work computer and continued to power through a mountain of emails. But then I decided to write. I wanted to take a moment to remind myself that right now, I’m beating the very, very poor odds. And that’s pretty damn empowering. Here I was, stressed about a normal work day while also simultaneously fighting the fight of my life. Mega props to my friends Ipi, Nivo and the entire Mayo Clinic Cancer Center because somehow I feel like I’m winning. And after that friendly reminder, work just doesn’t seem so stressful anymore.