A few weeks after I got out of the hospital last November, I wasn’t working and was looking for ways to fill my time and decided to try out a cancer support group close to me. Refer to the blog post entitled Ramblings about a hospital-free week, if you please, for a play-by-play of my ‘sad triangle’ first cancer support group experience. I didn’t go back to that specific support group again, but did go to a young adult cancer group a few times throughout the winter and while I felt like I could relate to the people in that group more, it still didn’t quite feel right. The majority of people in that group weren’t in active treatment anymore and didn’t have metastatic disease and when I would share during the group, I didn’t feel like there was anyone there who really understood what I was going through.
In that same blog post where I hash out my cringe-worthy support group experience, I also talk about connecting with someone who’d been diagnosed with stage IV melanoma back in 2010, who was treated with IL-2 and also did TIL and has been living with NED ever since. When I met Jamie, I felt like I’d finally found someone who got it. I had known her for all of half an hour before I broke down in tears in the middle of a Saxby’s about how devastated I was about getting a stage IV cancer diagnosis at the age of 22 and about how scared I was. She was diagnosed eleven weeks after her son was born. She understood how scared I felt, because she’d felt it too.
Not long after meeting Jamie, I got an email from someone named Cody at Melanoma Research Alliance inviting me to come down to MRA’s office in downtown DC to meet him and other members of MRA’s team. I was so excited to meet people who work day in and day out to spread awareness about melanoma and who support researchers who are working to advance treatment options for melanoma. I met Cody and MRA’s CEO named Michael and several other people who work at MRA and got to share with them what my story looked like so far.
At some point, I stumbled across the Instagram account of someone named Hailey who lives in Arizona and is several years older than me but has an eerily similar timeline and story to mine of being diagnosed with stage IV melanoma last fall. We started exchanging messages and reading each other’s blogs and marveling at how crazy similar parts of our stories were. I’ve never met her in person, but I feel connected to her in a way that is difficult to articulate with words because of what we both share.
Then in February, I got to go to MRA’s annual Scientific Retreat, where I met dozens and dozens of other melanoma patients and survivors and caregivers. I felt like I had found a family in virtual strangers, strangers who understood terms like BRAF and anti-PD1 and TIL and who understood the reality I was living because they were living it, too. For two days, I was immersed in a bubble where I felt safe and I felt understood. I heard stories of hope and stories of loss and through all of it, I felt reaffirmed again and again that these were such good people, my people, who had been brought together because of this terrible thing. I got to reconnect with many of the people I had met there again in April when my sister and I went to Raleigh, NC for a gala benefiting a non-profit called Polka Dot Mama (check it out here- https://polkadotmama.org/ -they are doing incredible things around prevention and early detection of melanoma!) that was started by an amazing woman named Tracy who is herself a survivor of several early stage melanomas.
In the past eleven months, I’ve connected with so many people who, in one way or another, have been touched by melanoma. I’ve spoken on the phone with a family member of a young boy fighting stage IV pediatric melanoma. I’ve connected with someone participating in a clinical trial that I am hoping to participate in. I’ve met someone who lost her sister to melanoma and works every day to keep her spirit alive through a foundation that helps fund melanoma research.
I’ve come to realize that I am stronger for knowing them, all of them. I never knew that such an incredible community could come out of something as shitty as this cancer. I’ve also come to realize that I carry these people and their stories with me each and every day. When someone shares that they have scans coming up, I feel my heart speed up just as it would when I think about my own upcoming scans. I jumped up and down with joy when someone shared with me that their latest scans showed NED. I found myself crushed and angry when another recently shared that their treatment was no longer working, that their scans showed new tumors.
Cancer is stupid. It is so, so stupid. And I hate that anyone has to deal with it. But I also feel very grateful for the friendships and connections I’ve made because of it. I feel like I’ve become strangely protective of these people I’ve come to know and come to love. When they celebrate, I celebrate and when they are given bad news, I feel for them in the very core of my being because I know what it’s like to sit in that chair and be told the thing you’ve been doing is no longer working for your cancer.
This post is dedicated to all my beautiful melanoma warriors. Every day, I wake up and I fight for myself and I fight for you. Let’s keep showing this stupid cancer who’s boss.