I was diagnosed with Stage 4 breast cancer at the age of 41. It was a complete shock; like so many women, I was immediately sucked into the medical vortex of tests, treatments, side effects, and fear. Breast cancer changed my life in every way – from losing a breast, my hair, and more than a year of my life to treatments, to its impacts on my family.
The whole thing was overwhelming. When I could finally look up again, I decided to take my experience and write a book to help other women and their caregivers. “Bald is Better with Earrings – A Survivor’s Guide to Getting Through Breast Cancer,” was published by HarperCollins in 2015 and has become an important resource for those navigating the complex, chaotic world of breast cancer diagnosis and treatment.
As I researched my book, I learned about the important work of patient advocates in programs like the BCRP and decided to get involved in patient advocacy. I began by educating myself about the science of breast cancer at the National Breast Cancer Coalition’s Project Lead, then gradually became immersed in the effort.
Today, I operate on many levels. As a volunteer with SHARE, facilitating a telephone support group for women with metastatic breast cancer, I work directly to support women who are living with this deadly disease. I am also the co-chair of the Metastatic Breast Cancer Alliance’s Information Task Force, and I participate every year in the National Breast Cancer Coalition’s Leadership Summit and Lobby Day in Washington DC to secure funding for the BCRP. As a Komen Advocate in Science, I have the opportunity to further my education in the science of breast cancer. This may sound like a lot, but as someone living with this disease, I know first-hand the importance of the work that these organizations do. They fight to make sure that the patient’s perspective is always included in medical and research decision-making.
One of the things I love about the DoD BCRP is its requirement that researchers show they are dedicated not just to the science, but to making a difference in the lives of people with breast cancer. I cannot overstate the importance of the DoD BCRP. It is one of the few federal grant programs that involves consumer advocates, to ensure that the patient’s perspective is included in the review process. BCRP’s grants must demonstrate the impact their research will have on actual patients in the real world, not just in the lab. The program has funded some of the most important breakthroughs in breast cancer research. The ripple effect goes far beyond the DoD.
My experience as a BCRP consumer reviewer has been deeply rewarding. Although I was intimidated at first by the science and even more by the prospect of being in a room surrounded by scientists, I gradually realized just how much the consumer’s perspective enriches the process and is valued by everyone in the program. The scientists and administrators recognize the importance of taking the ultimate consumer –the patient- into account in decisions. For me, the experience was incredible. By participating in the program, I have found yet another way to contribute to scientific and patient communities. Because of programs like the BCRP, new discoveries are being made toward ending breast cancer. There is hope. We are making a difference.
Last updated Tuesday, October 31, 2017