Last weekend, I packed my highest, sparkliest heels and headed to Las Vegas for the OMG Summit, a Stupid Cancer conference that aims to educate, connect and empower young people with cancer. After a whirlwind 48 hours, I went home to reflect on the event and what it meant in the broader context of the young adult cancer movement.
On a personal note, one cold truth I came up hard against -- probably when I fled the thumping bass and pumping fists in the Ghost Bar at the Palms for a more sedate cocktail downstairs -- is that, somewhere along the way, I got old. I departed the NCI-defined Adolescent/Young Adult age range of 15-39 a few years ago (six, to be exact). But, as Jen Merschdorf, my compadre at Young Survival Coalition pointed out, for a cancer survivor (or anyone, for that matter) the privilege of growing old is not a bad thing!
It made me consider that one explanation for the growth of our movement is that, for the first time in history, we have an expanding group of AYA leaders and alumni -- survivors who have always been connected with other young adults, who are familiar with the needs and issues of young adults, and who (often alongside their friends and family) choose remain connected post-treatment, putting their experience, knowledge and connections to work.
Like many others, my own experience 20 years ago was one of extreme isolation; I thought I was the only patient my age with cancer. Now, young adults quickly find each other online and in-person, and stay connected to support each other and to help the next patients. And when enough people are connected to stand up together and demand to be counted, that's when change happens.
I sat down to talk about the meeting and the movement with my friend, Dr. Dan Shapiro, who was there as a speaker and also blogging for CURE magazine. (Side note: a three-time young adult survivor himself, Dan is well known for his first book, Mom's Marijuana, but his admirable work over the years on patient-physician relationships gives a whole new depth to the phrase: "patient-centered.")
Dan asked me what I thought when I looked around at OMG, and my involuntary response was: "Proud!" Not that I had anything to do with pulling off such a busy and marvelous event -- the able team at Stupid Cancer, led by Alli Ward as event producer, gets full props for that! But I saw the Summit as a natural and wonderful progression from the hard work of an entire community -- patient advocates, health care professionals, researchers and patients -- in creating the field of AYA oncology over the last decade. And, as an original (by which I mean "old") member of that community, I felt a great deal of pride in having helped lay a foundation that would eventually support an event drawing hundreds of young adult survivors together.
In his State of the Union address, Stupid Cancer CEO Matthew Zachary demonstrated the sea change around AYA cancer awareness by pointing to the gradual infiltration of more accurate young adult cancer stories into mainstream media. The 2012 Seth Rogen/Joseph Gordon-Levitt film 50/50 was a milestone, closely followed by John Green's bestselling novel, The Fault in Our Stars (movie release coming this June).
And, in the category of art imitating life, Matt showed a clip from the upcoming ABC series, Chasing Life, which actually features the main character -- a young professional woman with cancer -- attending Stupid Cancer-branded meet-ups. With all apologies to Mandy Moore, we've come a long way from A Walk to Remember! And as young adult cancer sifts into public consciousness, it will become harder and harder to perpetuate disparities in care for this specific group of patients.
I saw old friends and made new ones in Vegas. Brainstormed alongside people with whom I have worked for years, and met some brilliant young people with brilliant new ideas for addressing the needs of the young adult cancer community. The AYA community is growing, evolving, and -- if OMG is any indication -- full of remarkable passion, talents, skills and enthusiasm.
And THAT is reason enough to rock high, sparkly heels every day of the week. I'm taking the Vegas spirit home with me and putting it to work. How about you?