This is a long one – buckle up! It’s Melanoma Monday. I’m supposed to tell you to go to your dermatologist and do frequent skin checks. Early detection is key! While that is 100% true, that’s not my story. Skin checks are insanely important, but right now, I believe Melanoma is not just skin cancer and we have to stop talking about it like it is. So, I’m gonna spend my Melanoma Monday talking about my marathon of a week last week. This post isn’t about dermatologist appointments or having moles and/or suspicious spots removed, it’s about scans, active treatment, and how I’m doing in my current battle against "not just skin cancer."
This past week marked another round of imaging (scans) and another round of Nivo. Typically my scan week consists of a PET scan, a Cardiac MRI and a Brain MRI. It’s a lot and I’m sort of stuck in a tube for most of the day, but I prefer to knock it all out a once so a) I can minimize my time off from work and b) so I only have to get an IV once (stupid veins).
Insurance threw a pretty big wrench into the situation when they didn’t approve the PET scan. The letter they sent me and Dr. B said they didn’t have a good enough reason to approve it. Can you imagine that?! Apparently Stage IV Melanoma isn’t a “good enough reason” (INSERT MEGA EYEROLL). The optimist in me assumed that it was based on my previous PET results which showed no metabolic activity, but I’m probably just being a positive person and the reality is insurance companies suck sometimes. So, plan B consisted of a CT scan of my chest and abdomen. Worst case scenario, if those showed anything to worry about, we could then have a follow up PET. Yep – good 'ole (unnecessary) two-step process.
Well, because of some scheduling conflicts (dumb) I couldn’t have all the scans at once. I had my CT scans Monday morning and then both MRIs at the same time on Wednesday morning. All before my doctor’s appointment and next infusion on Thursday. Why am I telling you all this? Hang on, I’m getting there 😉
Last week I learned a very important lesson about my mental brain capacity. Sometimes juggling cancer life and real life is no easy task. With my CT scans on Monday morning, I then went to work the rest of the day thinking it would be totally fine. It wasn’t. I was a disaster. That’s a bit of an exaggeration, I was technically fine, but the point is I was extremely distracted, unmotivated, and quite anxious about my test results. I don’t seem to have much scanxiety leading up to the scans but once they’re done and someone knows the results but you don’t – woof, that’s tough. To be honest, Tuesday wasn’t much better. Tuesday late-afternoon rolled around and I got a message that said, “scans looked great” – which was awesome but didn’t help that I had spent 2 days unfocused and anxious leading right into another day of tests. I’m grateful that the company I work for allows me to take PTO for treatment days, and this week solidified just how much I need that.
I spent Wednesday morning stuffed in an MRI tube for nearly 3 hours. It was BRUTAL. The brain MRI is pretty straight-forward but I don’t wish the cardiac one on even my worst enemy. I had what felt like a half-attempted panic attack while I was in there because I had taken an anti-anxiety pill beforehand. It’s not the small space, it’s the fact that I can’t move and I have to hold my breath probably about 80-100 times. Hearing the same robotic “take a breath in, breathe out, hold your breath…. resume breathing” over and over and over again straight up makes you feel like you’re going insane. This time, I actually cried in there. Awful.
The good news (and probably what you’re reading this for) is that everything is stable! My heart guy and a lung guy are still there, but they remain unchanged. As I talked about last time, they think those might be scar tissue and will likely be there forever. I’ve got to get a meeting again with a Cardiologist to see if the guy in my heart will cause problems long term. This was interesting because we had asked this back in February when I met with him, and he wasn’t concerned. But Dr. B had a good point – the equation has changed and therefore the risk/benefit analysis could be different. Before, we were looking at a 6-12 month timeline and open heart surgery to remove that sucker made ZERO sense. But now we’re actually looking past that and into the 5-10+ year timeline. I’m not saying I’ll have it removed, but it’s worth a conversation with a professional for sure. In all this mess, these are the conversations I enjoy. It’s a nice reminder of just how miraculous this entire treatment has been.
After I had my infusion Thursday afternoon, I stuck around Mayo to finally attend a support group for young adults with cancer. I’ve been so so so looking forward to this and haven’t been able to attend the last couple times (hey there, Disney trip). Let me tell you – it was, strange. I was in a room full of people I had never met before and yet we all had this giant thing in common: we were all going through old people things at such a young age. It wasn’t like we all sat there in a circle and cried about our problems, but we played games and made some jokes about cancer things. Most of these people had some sort of lymphoma and are currently having or have had what I call “traditional chemo.” I sort of felt like and odd ball out because I still had all my hair and didn’t relate to their port stories. Overall, I still felt like I belonged as none of us seemed to have an answer as to why we were all there to begin with.
So, help me bring some awareness to this side of Melanoma. The side of Melanoma that is uncomfortable to talk about because it’s difficult to understand. It’s important we bring awareness to #notjustskincancer, because awareness means education and research. And education and research means new treatment options for people like me. Not that long ago, my diagnosis would have been a death sentence. If I had been diagnosed five years ago, I wouldn’t have made it to this very Melanoma Monday to tell you not about the mole I had removed, but about the #notjustskincancer Melanoma that is my heart, lungs, brain, arms and legs. The same #notjustskincancer Melanoma that is the leading cause of death for women 25-30 and the second leading cause of death for women 30-35. The same #notjustskincancer Melanoma that I am currently beating.
So for Melanoma Monday, do me a favor and share my story with just one person. I dare you.