FROM FEAR TO FEARLESS

By channeling my terror, rage, and passion to save others from this awful disease, I’ve become more fearless and questioning of the status quo. When I was diagnosed with breast cancer at age 45, I was afraid I would not live to see our then 14-year old daughter, Gail, graduate from high school. That was 21 years ago and I’m thrilled I’ve lived to see Gail become a physical therapist, marry and have two children. I’ve also lived long enough to channel my initial terror and rage about breast cancer into meaningful action to end breast cancer.

I do this because I don’t want Gail, or my granddaughter or anyone else to get breast cancer or suffer from its treatment. By channeling my terror, rage, and passion to save others from this awful disease, I’ve become more fearless and questioning of the status quo. My fear drove me to read extensively about the science and emotional impact of breast cancer and that led me to join the National Breast Cancer Coalition (NBCC). Three years after my diagnosis I attended NBCC’s Project LEAD, a science training program for activists. LEAD taught me critical thinking skills and how to bring the survivor perspective to the important issues and controversies in breast cancer. It prepared me to engage wherever breast cancer decisions are made. It taught me to question the status quo. It made me fearless. I came home from Project LEAD, joined the Beyond Pink TEAM (BPT), and began working to make things better for Iowa women with breast cancer. Initially several of us created an all-Iowa Breast Cancer Resource Guide which provided all the information we wish we had when we were diagnosed and going through treatment. The Guide was distributed free throughout Iowa. Later we started BPT’s events for Young Cancer Survivors. After realizing the needs of women of color with breast cancer weren’t being well-served, BPT offered one-time grants to help meet the needs. Out of this project, Cathy Ketton and her daughters founded Splash of Color, the only breast cancer education and support group for women of color in Iowa. Working with members of Beyond Pink TEAM and guided by NBCC’s mission to end breast cancer, we have made a national difference too. Every year since 1997 I’ve led the Iowa delegation as we lobby our Senators and Representatives for the priorities of the National Breast Cancer Coalition. In 1998, BPT members met with Senator Grassley and asked for his help to pass the Breast and Cervical Cancer Treatment Act. He helped and now those diagnosed with breast and cervical cancer through this program become eligible for Medicaid for their treatment. Again in 2010, when no other Republican Senator would step up, we asked Senator Grassley to be a lead sponsor of the Accelerating the End of Breast Cancer Act. He said, “yes” and Senate gridlock was broken. While the Act still hasn’t passed we continue to work to “get ‘er done.” Through our work with Iowa Senator Harkin and NBCC, we have had an outsized influence on how breast cancer research money is spent. Twenty-two years ago, NBCC and Senator Harkin convinced Congress to put $210 million into a new breast cancer research program in an unusual place, the Department of Defense (DOD). Since then, that program has awarded nearly $3 billion in grants, making it the second largest funder of breast cancer research in the United States after the National Cancer Institute. The program has pushed for high-risk, high-reward research and studies that affect cancer patients’ lives. Educated breast cancer advocates have a seat at every level of decision-making. I know because I’ve had the opportunity to have a seat as a reviewer for the DOD Breast Cancer Research Program. But the incidence of breast cancer in the U.S. is still rising, and mortality is down only slightly. I just found out my cousin’s breast cancer recurred in her bones after being diagnosed over 15 years ago. I’ve watched too many friends die of this disease. There is too little research on prevention of breast cancer and prevention of metastasis. So now I am focusing my efforts on NBCC’s Breast Cancer Deadline 2020: to know how to end breast cancer by January 1, 2020. We need to bring back urgency to breast cancer and that’s why I need to continue to be passionate and fearless about doing what it takes to prevent breast cancer and save lives. I hope you will join me. Commit to end breast cancer and become an NBCC member. BreastCancerDeadline2020.org