I Found My "Why"

Every October as the weather starts to turn from disgustingly hot and miserable to “oh wait it’s not actually so bad outside,” I find myself a little on edge and semi-anxious. It really sneaks up on me every year, but I’ve come to learn that the cooler air and pumpkin spice-everything are actually a bit of a trigger for me.

You see, October 1st, 2018, was my first time at Mayo Clinic, when I met with Dr. Bryce. There were a slew of appointments that week quickly followed by my brain radiation treatment on October 11th and my first Ipi/Nivo combination immunotherapy infusion on October 16th. Those quickly led me to being hospitalized for 9 days, starting on Halloween. It’s been 7 years, and I didn’t have to look at a calendar to remember these exact dates – they’re burned into my brain.

I was diagnosed with metastatic melanoma six months before my 30th birthday. When your world is flipped upside down in a matter of moments, and the unimaginable becomes your reality, it’s really hard to not ask “why me?” Somehow in the midst of a life-altering medical diagnosis, I had enough wisdom to not dwell on the why. I knew it would never get me the resolution I was looking for. That kind of thinking felt counterproductive, and I knew it would only drive me mad. In the back of my mind, I knew I’d find some sort of purpose in it all – eventually.

In my first appointment with Dr. Bryce, he said to me, “we don’t have a lot of data on people like you.” And he was right. My entire treatment journey and into the early days of survivorship – I searched and searched for a success story. Prior to Ipi/Nivo, average life expectancy of a metastatic melanoma patient was 12 months – and even shorter with brain mets (which I had). I, so badly, wanted to know someone who was on the other side.

As I navigated survivorship, I made it a priority to continue to be involved in the Adolescent & Young Adult (AYA) cancer community. I became a tenured member of AYA Support Group. I joined a Patient Advisory Council at Mayo Clinic and have had the absolute pleasure of speaking on a few patient panels to help shape future care for AYA cancer patients. I’ve connected with so many other warriors and their families. And I’ve found that my cancer experience is incredibly powerful – and it provides the same kind of hope I was looking for all those years ago.

Dr. Bryce left Mayo Clinic near my five-year post-treatment mark, and I grieved his departure as if I lost a family member. He was such a significant part of my story, and I couldn’t imagine survivorship without him. We recently reconnected, and he invited me to be his guest at an upcoming gala for a local charity. Amanda Hope Rainbow Angels is an inspiring organization that helps families impacted by childhood cancer. Dr. Bryce was a presenter, and he wanted to share a bit of my story.   

Last night, my mom and I attended “Night of Hope Gala” to support Amanda Hope Rainbow Angels and the cancer community. Dr. Bryce shared my experience with a room full of 400+ strangers. He talked about how my disease was so aggressive and rapidly progressing. He shared how he believed, based on his own studies and research, Immunotherapy was a viable treatment plan for long-term success. He shared anecdotes of my overprotective family – validating the parents in the room that just want to protect their sick kiddos. He concluded his speech mentioning how I continue to support and advocate for the AYA cancer community – even 7 years later. Just when the audience began their round of applause for his speech, he threw them a curveball and gestured to me – sitting at a table on the side of the stage. I stood as he asked them to redirect their applause. There were gasps, tears (largely my own), and a f*cking standing ovation.

Hearing Dr. Bryce’s perspective created this sort of out of body experience. Watching all these strangers latch on to the hope from my story gave me such an overwhelming sense of pride. Every now and then, I find myself absolutely humbled by my own story – as if I wasn’t the one to experience it. Let me tell you – it is a WILD feeling.

Shortly thereafter, I was pulled on stage for another round of applause and another standing ovation. I stood at the front of the stage, with tears in my eyes staring back at a room full of people searching for hope. In that moment, I was the hope.

The hope that even some of the scariest prognoses can still have happy endings.  

As Dr. Bryce said, “cancer care is an endless series of tragedies and miracles.” And while he continues to work tirelessly to find more ways to turn those tragedies into more miracles, I remain incredibly grateful to be one of his miracles.

Looks like my own cancer miracle story is precisely the one I was looking for so long ago.