Finding My Tribe

April 29, 2019

I didn't see how alone I was with cancer until I found purpose and friendships with advocacy.

Although I started writing about my experience of living with cancer soon after I was diagnosed, I didn't put "my story" together with cancer advocacy until about a year and half later. That was when I met a tremendous advocate, Katherine O'Brien from the Metastatic Breast Cancer Network. Before then, I didn't really think about advocacy as something I was doing. I wrote to share how I live with cancer and how I find hope and resilience despite loss. I thought a lot about the people who might read my words, what they might be experiencing and how others had been there too.

Katherine and I are now friends, but I've never asked her what prompted that first contact. I suppose I'd been an advocate before then, but Katherine was my first introduction to how organized advocacy can do so much to change the trajectory of metastatic cancer. I was lucky to meet Katherine when I did, in part because she supports and teaches others. That selflessness was the ideal introduction to advocacy for me and has shaped how I think about my own advocacy as furthering and amplifying everyone's hard work.

Metastatic breast cancer advocates have fought for a single day of recognition (October 13) each year within breast cancer awareness month; raised millions of dollars and funded groundbreaking research; put the focus on metastasis through single-focus conferences that brought scientists and patient advocates together; gone to Washington DC to lobby for more money directed toward metastatic research and better healthcare legislation, supported women and men diagnosed with metastasis, and on and on. The world of cancer advocacy is full of astounding women and men who want me to live longer and better.

For myself, the metastatic cancer diagnosis shrunk my world in one heartbreaking sentence. Suddenly, the personal hopes and the dreams I had for the future with my husband after our kids had graduated college were put into a "maybe" category in my mind. Instead, I was focused on just finding ways to get through each day, then each week and month. By the time I met Katherine, I was just as uncertain about the future (that's what it's like to live with stage 4 cancer) but I could see my world opening back up.

Getting involved with a reputable organization or two (or more) has given me a place to put my focus. I may not change my personal health story with this type of advocacy, but my efforts and those of the hundreds of other advocates might change it for my children and for your children. It may mean that we have better access to trial drugs, more research directed toward meaningful treatments rather than awareness, fair and equitable care whether on private insurance, Medicare or Medicaid, better drug prices and, the goal of all goals, a cure.

But it's not all work. The people I found at these organizations and those advocating on their own through social media sped up the expansion of my world. I didn't see how alone I was with cancer until I found my tribe. We are like any group of friends — arguing, crying, wishing each other the best and mourning when we lose.

Every organization can use another set of willing hands and the best of them recognize that each of us has a unique and special set of skills to bring to the table, so that we all matter. As one dear friend, Judy Hallin Erdahl, once said to a classroom full of Living Beyond Breast Cancer advocates, "[Your advocacy] doesn't have to be big to be meaningful and important."


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