As I continued to recover from my first awake brain surgery on April 22, 1998, I attended support groups in Washington, DC. During our conversations, I explained some of my experiences, and I also shared brain tumor research findings to patients and caregivers.
It was at those meetings that I met Audrey—her sweet smile, intelligence as an attorney, independence, and love of her family was palpable. Audrey was dealing with a glioblastoma multiforme (GBM) and, thankfully, doing well in some ways. We had a sweet connection, and sometimes we traveled home together on the Metro.
Ultimately, Audrey stopped attending the support groups. Someone said her GBM was growing. Two of my friends from the group asked me if I wanted to visit her.
We arrived at her house, and Audrey wasn’t in the living room. When she did enter, my heart skipped a beat. I blocked my sadness so as not to cry. Audrey was in a wheelchair. She was sedated. Her face was inflamed, her head tipped to the side. As the sorrow overwhelmed me, I saw in person this horrific disease for the first time.
Audrey died from GBM. Her death was tragically impactful to many people. I went to her funeral and returned home with tremendous sadness and rage. That night, for over six hours, I sat at my desk in my small apartment and wrote letters to policymakers. The letter featured brain tumor and brain cancer education, and the absolute need for research. That night I continued to write more letters on behalf of my family, friends, and anyone for whom I had an address. I then sent the letters to each person in my world, asking if they would mail the letters to their House of Representative and Senators in Washington, DC.
I felt a mosaic of emotions as my tears melted in my tender tapestry. My pain shifted into proactivity. My anger transformed into attention. My motions supported by motivation. Over time, that helped redefine some aspects of my psyche. Challenges became opportunities, and adversity transformed into ongoing actions.
I’m now a 20 year brain tumor survivor. I’ve seen too many people die from brain cancer and other types of cancer. I know some brain cancer patients dealing with growth. This is unacceptable. More brain cancer research is paramount.
Each person has her calling in life. The path is an individual process. I’ve done different things, including fundraising for brain tumor and brain cancer research, lobbying Congress on specific topics, education about brain tumors, brain cancer, and other types of cancer, information about integrative cancer care for the whole person, working as a Cancer Coach, supporting professionals in the cancer arena, delivering speeches on various topics, and much more. For me in my journey, these roles in advocacy have been meaningful.
Based on your interest, if you want to make a difference in your advocacy, think about what you’d like to do. Ideas include attending fundraising events, creating your own in your area, as well as donating to hospitals and cancer non-profits. Lobbying Congress is also an approach asking for increased brain tumor and brain cancer research. At the same time, education is extremely important. There are many ways to be an “advocate,” to embrace what is best for you.
May is Brain Tumor Awareness Month.Some events will occur locally and nationally to educate and fundraise for research. The most extensive national fundraising event is Race for Hope in Washington, DC on May 6thorganized by Accelerate Brain Cancer Cure (ABC2) and the National Brain Tumor Society (NBTS). More information is provided here to register and donate.
The urgency is too real. More money for more research must occur. Now is the time.
