My story with breast cancer can be seen as
a tragic one.
But instead, I want people to see it as hopeful and inspiring.
Cancer is part of my life but it doesn’t define me.
At first I did not get involved in support groups or advocacy work.
But a few years into my new life with cancer, I became more aware and outspoken and learned the power of sharing my story.
AND HOW I BECAME AN ADVOCATE
MY JOURNEY SO FAR
My story with breast cancer can be seen as tragic. But instead, I want people to see it as hopeful and inspiring. I was diagnosed with breast cancer in 2013 while pregnant. To my surprise, chemo during pregnancy is the standard of care. I delivered a healthy baby boy with a head full of hair while I had no hair at all. After he was born, I did tests I couldn’t do while pregnant and we discovered the cancer had already spread to my brain, liver, and bones. After trying different drugs and finding the right one for me, the cancer started to respond to the therapy. There were (and still are) many setbacks: most drugs don’t penetrate the brain, many drugs harm the heart, the side effects can be debilitating and my illness has taken a huge emotional toll on me and my loved ones. But I’m still a dynamic, loving 35-year-old woman. And at every moment since my diagnosis, I was still LIVING. Cancer is part of my life but it doesn’t define me.
My new reality of living with this disease has opened my eyes to the inequities in breast cancer. Did you know that the share of the money obtained in pink campaigns that goes to research on metastatic breast cancer is negligible compared to where the rest of the money goes?
Or that breast cancer mortality is 40 percent higher for African Americans? Metastatic breast cancer is the only breast cancer that kills and research is the only effort that truly helps patients do what we want to do - LIVE! That is not pink!
That’s why I decided to get involved in advocacy. It has been a very rewarding experience.
I especially enjoy being in touch with researchers and showing them the side of breast cancer they often can only imagine - the life of a patient. After a recent collaboration with a researcher, he told me “Regardless of whether we meet again, I want you to know I have been moved by your profound fighting spirit and it is making me redouble my efforts within my research.”
My goal is to make an impact while I am here in the lives of others dealing with this disease.
My goal is to make an impact in the lives of others dealing with this disease. I especially enjoys working with researchers, clinicians and other stakeholders to ensure research is patient-centered, innovative and accessible.
Together with Christine Hodgdon, I co-founded GRASP – Guiding Researchers and Advocates to Scientific Partnerships. GRASP fosters collaborations between researchers and patient advocates through walkthroughs of poster sessions at medical/science conferences in which patients learn from scientists and scientists learn from patients. The program has been a favorite of scientists and advocates at ASCO and SABCS and continues to expand.
I am also a Komen Advocate in Science (AIS), a member of the Metastatic Breast Cancer Alliance (MBCA), an Alamo Foundation scholar, a DoD Congressionally Directed Breast Cancer Research Program reviewer and a Living Beyond Breast Cancer Hear My Voice advocate.
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Community
Affiliations and Memberships
I believe
That patients need to have a voice in research
In the power of science and technology
In accurate & true information
In bonds between people