Retiring after 24-years as an Air Force intelligence officer, I took a senior analyst position in the Defense Prisoner of War/Missing Personnel Office working to resolve cases of Americans still unaccounted-for from the Vietnam War and the first Iraq War. Based in Washington DC, I met with families of the unaccounted-for and frequently traveled to field offices in Hawaii and Southeast Asia. I was happily ensconced in a great career when in 2004 I felt a lump under my arm. I’d had a “perfect” mammogram only three months earlier, but tests confirmed I had stage II breast cancer. Teleworking from home during treatment, I returned to the office in August 2005. However, my recovery soon slowed, then stopped and I began losing weight. It took months of complaints, ultimately in writing, to get a scan. Then a radiologist diagnosed benign granuloma in my lung and my complaints were wholly dismissed. It was my primary care physician who took note of my declining health and ordered a second scan plus a biopsy. My breast cancer had metastasized (spread) to my lung and I was told the odds were less than 5% that I’d be alive in five years.
Deciding to have the lobe with the tumor removed, I was back in the same pre-op area where I’d awaited breast cancer surgery in 2004. Two years prior, a cheery breast cancer survivor had breezed into my pre-op cubicle bearing gifts, offering advice, telling me about numerous local support programs, offering to mentor me throughout my treatment and promising my life would be back to normal within a year. Now my life was forever changed. I would be in treatment the rest of my life, and I would die of the metastatic breast cancer (MBC). I was devastated, frightened and desperately in need of advice; but for metastatic patients the hospital had no program … no volunteer, no mentor, no advice, no gifts … nothing. This was life on the “other” side. And it was a huge eye opener.
I quickly educated myself: An estimated 63,000 to 85,000 Americans are diagnosed annually with MBC. 30% of all breast cancer patients metastasize. While some patients survive for 8, 10 and even 20 years, average survival is only 18-24 months and only 2-3% of patients survive the disease in the end. The fact that I could find no support for this disease was shocking … and wholly unacceptable. Before long I was working with other MBC patients, helping them adjust. But I soon had another shock.
In January 2007 I was watching the Sanjay Gupta CNN special: Saving Your Life and learned that less than 1% of our $5 billion annual national cancer budget went to any metastatic cancer research. Outraged, I called 20 mainstream cancer organizations such as Komen, LiveStrong and the American Cancer Society. I asked each one how I could donate solely to metastatic cancer research. Each one told me I could not.
I looked up the 1% statistic. It came from the 2004 Fortune Magazine cover story “Why We’re Losing the War on Cancer [and How to Win It].” I contacted the author, Clifton Leaf. He put me in touch with renowned metastasis researcher Danny Welch and my research education was launched. Since then I’ve met and worked with numerous career metastasis researchers. I’m awestruck by their brilliance and dedication; but I am distraught by the fact that they struggle greatly to have any research funded.
By January 2009 my local support program was averaging 30 members and I was helping patients elsewhere start their own support programs. It was time to tackle research. Thus four of us from the support program co-founded METAvivor Research and Support as a 501(c)(3), all-volunteer, non-profit organization.
Today METAvivor is the only non-profit that exclusively awards MBC research grants. We put 100% of every donation into these grants. Working directly with researchers, we fund specific projects so that we have complete control over how the funds are used. On the recommendation of the Metastasis Research Society we offer small starter grants to get innovative, out-of-the-box ideas up and running. No one else is funding these and if we want more than small, incremental change, this is precisely the type of research that will do it. We also promote the concept that all cancer organizations should devote 30% of their research budgets to stage IV research for the very simple reason that 30% of cancer patients metastasize.
I was President the first four years and this year turned that position over to my very capable Vice President so that I could focus on my preferred area of interest as Director of Advocacy. METAvivor will continue to support patients, raise awareness, fight for proportionate funding and award MBC research grants until the day our disease is transitioned from a terminal illness to a controlled, manageable condition – one that allows patients with the disease long, quality-filled lives. I cannot imagine a more worthwhile endeavor and feel truly blessed to be able to spend whatever time I have left doing the work I am presently doing.