In 1996 I was living in a small bit of paradise on the northern California coast with my husband and our 14-year-old son. Besides my sometimes challenging job as a Clinical Laboratory Scientist, looking at blood slides, identifying pathogens in various specimens from sick people, I was also quite involved in trying to ensure that our son got the very best possible education, one that stretched his inquisitive mind. Cancer was a scary word that was not commonly in my thoughts, and I had very little understanding of what is was, what it meant. Since my diagnosis, however, not a day has gone by that the word hasn't been an integral part of my life.
Fortunately for me, I found the earliest online breast cancer group, the bclist. It was one of very few cancer support services on the Internet at that time, but it was already a vibrant community of almost 1,000 emailers. There were helpful doctors, a few nurses, and a whole lot of people from around the world who shared personal stories of their own diagnoses and treatments. We were all trying to learn everything we could about the best possible options, given our various circumstances, how to cope with side effects from treatments, how to live normally after we were finished. There was a large group who was living with metastatic disease, which meant that every year we read about quite a few deaths. I still belong to that group.
I soon became involved with the local cancer resource center. Over the years, I did a lot of peer support work with those newly diagnosed, plus eventually functioned as a research advocate and translated findings into lay language for those less familiar with science jargon.
Because of friendships from the online list, I started going to the National Breast Cancer Coalition's (NBCC's) Advocate Training Conferences held each spring, which culminate in lobbying our Congressional members for each year's NBCC priorities, the main one of which is usually ensuring that the Department of Defense (DoD) Breast Cancer Research Program (BCRP) is funded. It was through NBCC's efforts that this program came into being in 1992. One of the non-negotiable items has always been the involvement of trained advocates at every step of the process.
Although I had good science background, I knew I needed something more specific, so I went through the NBCC's intensive training course, Project LEAD, in 2003. Since then I have also graduated from the Clinical Trials LEAD, as well as the Quality Care LEAD. I have attended all the San Antonio Breast Cancer Research Symposia since 2003 and the American Society of Clinical Oncology and American Association for Cancer Research conventions for several years.
While still living in California, I was a member of the California Breast Cancer Research Program's Advisory Council for 3 years, where I did programmatic review of research proposals. After moving away from that state, I participated in several of their peer review panels.
I was very honored to be asked to become an ad hoc reviewer for the Integration Panel of the DoD BCRP. Although I felt comfortable with much more of the research jargon and, specifically, that of breast cancer, I admit to feeling quite outside my comfort zone when I entered that first panel session. Here were the experts! Here were some very well-known and respected researchers! But I also realized that I was the expert when it came to living with a diagnosis, knowing what it was like to live with the worry of recurrence, and the sobering reality that about 40,000 lives were lost in the United States alone each year due to this disease.
I was confident that this program expected the funded research to truly make a difference in the mission to end breast cancer. We (and I soon felt I was part of the "we") had to be critical thinkers, ask continually if this particular proposal was simply more of the same and incremental, or if it held the possibility of real progress. I found it challenging to say the least. It is so rewarding to be able to sit with researchers, to know they are listening to what I have to say, not as a scientist but one who is living with the disease.
Why "the reluctant advocate"? Unfortunately, I am now living with metastatic disease. In addition, two of my five sisters have been diagnosed. And I can't begin to tell you how many friends have died. Every time I would even think about retreating from my advocacy work, something else would happen to forcefully remind me that we're far from having the answers we need. I would love to live my life with few thoughts of cancer. This is not how I intended for it to turn out. It has become even more vital to me to advocate for better research, to change the conversation about what is done and how it is done. My personal goal is to live long enough to see real breakthroughs toward eradicating breast cancer.