by Heidi Adams
I have a complicated relationship with Thanksgiving.
It became complicated—way beyond the usual family holiday dynamics—on November 30, 1993, when I was diagnosed with cancer on the Monday after Thanksgiving. I was 26 years old, and had endured eight months of excruciating pain and excruciating misdiagnoses before an MRI finally exposed the Ewing’s sarcoma lurking in my left tibia. Thanksgiving signaled the kickoff to more than a year of treatment: chemotherapy every three weeks and a course of radiation to my ankle. I finished treatment in 1995, battered, exhausted and unsure of my place in a world that had been turned upside down. Slowly, I built myself back up and cautiously put the pieces of my life back together, constantly looking over my shoulder in fear of being blindsided again.
Cancer had knocked me onto an entirely new path. For the next decade, I developed myself as an expert in something beyond bartending and backpacking. I built an entire career on addressing the needs of young adults with cancer who found themselves in the same place that I had been: isolated, ignorant, broke and with many other unique needs related to that stage of life that were neither recognized nor addressed. I founded Planet Cancer, the first national community of young adults with cancer, so that we could support each other and advocate together on our own behalf.
As this work that was so meaningful to me progressed, my relationship with Thanksgivings improved. Fast forward to my cancerversary in 2003, when I gave birth to my amazing, wonderful twins on November 30. Talk about karmic bookends: the worst day of my life and the best fall on the exact same day, creating some sort of cosmic détente as the scales balanced between the forces of life and death.
More Thanksgivings came and went, and the leaps and bounds of my children’s growth was paralleled by varying degrees of progress in the field of AYA (Adolescent and Young Adult) oncology. In the early years, we struggled to get the medical community to even acknowledge that there was a systems gap for young adults, who existed in a no-man’s-land populated either by small children or people their grandparents’ age. The turning point came when the LIVESTRONG Foundation convened a small group of thought leaders and challenged us to think big, with no constraints, and to tackle the question of “How do we move the needle on addressing the needs of young adults with cancer?” That small brainstorming session sparked a large national scientific meeting in 2006, co-hosted by the Foundation and the NCI, which produced an official report with findings on the gaps in treatment and care of young adults.
To continue the momentum, the Foundation launched a program called the LIVESTRONG Young Adult Alliance, which grew over the next few years to a robust coalition of nearly 200 advocacy organizations, medical institutions, government liaison members, professional societies and other stakeholders, all coming together to develop a strategic plan to implement the report findings and committing to work together to bring it to life and benefit young people with cancer.
This coalition-building and implementation effort was entirely funded by the Foundation, and was primarily driven by volunteers like myself whom they empowered to set the strategy and activities for the group. In 2009, after years of working closely with my colleagues at the Foundation, I was invited to become an official staff member. Planet Cancer became a program of the Foundation, and I took a broader role in patient advocacy, where I realized that the approach the Foundation had taken with young adults was classic LIVESTRONG: find a gap that no one else is touching with a ten-foot pole (young adults with cancer), bring a group of key stakeholders together—sometimes kicking and screaming—to develop common goals and support collaborative, ongoing action to implement solutions and drive systemic change. It’s an audacious approach, and it works.
Now, Thanksgiving 2012 marks another birth, that of Critical Mass: The Young Adult Cancer Alliance, as this initiative spins off from the LIVESTRONG Foundation incubator and takes its first steps as an independent nonprofit organization. On the heels of the coalition’s aptly named annual meeting, “Mission Continued,” Critical Mass enters a world that is quite different from the early days of the first Alliance, when no one even knew what AYA meant. Across the country, there are now fellows being trained in AYA oncology, a medical journal and a professional society. Next year, two milestone meetings on young adults will be held by the NCI and the eminent Institute of Medicine. And Suleika Jaouad, a self-described “cancer warrior,” eloquently brings to life the challenges of being a young adult with cancer in a weekly blog for The New York Times—the most public of platforms.
As Critical Mass launches, I am excited and proud to be taking the helm. As one of my co-workers pointed out, “It’s kind of like you’re moving into the house next door,” because the Foundation has generously committed $300,000 per year for the first three years to Critical Mass in order to cushion the transition. We’ve come so far, but there is much work to be done, and I look forward to continuing to work side by side with Foundation colleagues whose passion for this field rivals my own, developing audacious and effective plans that will continue to change the lives of young adult with cancer.
It’s Thanksgiving and, this year, I’m giving thanks.