Why do we involve ourselves in causes? I’ve been thinking about this a lot since the Hear My Voice Advocacy Training in which I was lucky enough to participate as part of the Living Beyond Breast Cancer Annual Conference for Women with Metastatic Breast Cancer a couple of weekends ago. For most of us, I think a personal connection to a cause motivates our action – having kids in school makes some of us activists on behalf of education; living near a Superfund sight gets people involved in environmental advocacy; having cancer or a loved one with cancer puts cancer front and center on our causes-to-work-on lists. Some folks see a much bigger picture. All anti-nuke activists do not live near test sites. All anti-poverty activists are not poor. All gay rights activists are not gay. Some of us are inherently local actors and some, for whatever reason take a more global approach.
After my treatment for early stage cancer ended two years ago the last thing I wanted was to think about cancer. It was, I thought, likely behind me and I needed to MOVE ON. I’m guessing many of us wore those get-me-the-hell-away-from-here shoes. I did not want to dwell, certainly did not want to think about the worst thing that might happen (except that it did). I needed to clear my psychic space of cancer as well as I could.
Fast forward: I have metastatic breast cancer and only now have the big picture of breast cancer in general clearly before me. Part of me is loath to admit that only when I became one of the estimated 150,000 or so people living with MBC in the U.S. did I become active in the cause of realism around breast cancer and not the pink-tinted view that might be the only thing most people are “aware” of about the disease.
Enough about me, already. Our training group (the first for this new LBBC program) consisted of 31 women. The purpose was to become LBBC’s first group of trained volunteer advocates, the requirement in return being to organize at least two outreach activities this year. As I shared before, the oldest is 68, the youngest 24. We were all ages in every decade between. We were of different races, religious affiliations, and we came from all over the country. In short, a good microcosm of the U.S. MBC population, except we were missing a man with MBC in the group. The thing we have in common was quickly apparent. We are all doers. Together we were a pretty raucous, assertive, opinionated group. I smile often at my fond memory of the poor facilitators trying to get us quiet! I wish we had more time together to share what we would each work on as our individual projects, but we are in touch on line and sharing those very things daily. We have each other as resources off of which to bounce ideas both conceptual and logistical. We have each other as supports and cheerleaders for the things we are attempting to accomplish. We have each other.
I was happy to learn more about the Metastatic Breast Cancer Alliance working with the incredible backing of the Avon Foundation. I hope to put some of my more wider-world energy into advocacy with this amazing group. In a nutshell, MBCA brings together researchers, advocates, clinicians, educators, fundraisers, pharmaceutical companies to hone the work towards finding more life-extending treatments with better quality of life for the many, many people living with MBC. Hell, even a cure. I attended a seminar on yoga and confirmed that not only are the psychosocial benefits proven with data from studies, but that researchers are indeed investigating the connection between intensive yoga practice and alterations to cancer at the cellular level. Mostly though, being with the other women with whom explanations of so much can be left unsaid, with whom an unspoken understanding of each other just exists, was empowering, comforting, and in a good way, simple. After a raucous dinner out, there was mutual understanding of the need to disappear and sleep. We all hit our walls at one point or another, especially after returning home and having the high of being there slowly wear off.
I’ve always been more of a local than a global actor. I’m inspired by Mother Theresa’s adage to “do what’s in front of you.” Here in my town of 10,000 in a county of 30,000,that has taken the form of public school volunteerism and advocacy, work with domestic and sexual violence survivors, and now, telling the truth about breast cancer and developing opportunities for community members with MBC to know and support each other. Within the parameters of working locally on my cause, I see the need to raise, no, CHANGE breast cancer awareness in my community to an awareness based in the reality of the disease. I intend to debunk the myths of 1. Early detection = cure, 2. Early detection is always possible with regular mammograms, 3. Late stage diagnoses = neglect by the patient to spot early indications of disease, 4. Young women do not get breast cancer, 5. Annual mammograms protect women from dying of breast cancer, 6. Buying pink products and event registrations help the cause of ending breast cancer, and 7. There is a way to prevent (and thus knowledge of a cause of) breast cancer. There are too many myths to debunk these days, partly because of the commercialization of the breast cancer cause. As medical sociologist Gayle Sulik noted, “by the 2000’s commoditization of breast cancer shot past advocacy in terms of time, attention, and resources. Pink ribbon visibility started to replace deeper understanding of the complexities of the disease.”
Breast cancer is not one disease. There are subtypes, and within those subtypes each individual’s response to the disease and its treatment. If you have a certain subtype of breast cancer and are treated with the standard of care for that subtype you may have a complete response (this is good), a partial response, or your cancer may not respond to the available treatment. Active disease may stay at bay for years, months, weeks, or not at all. Early detection is good for slow growing cancers and those easily seen on mammograms. Lobular breast cancer is, by all accounts, sneaky and difficult to detect in its earlier stages. Inflammatory breast cancer is aggressive and first detectable on the skin, making it at least stage IIIb at first diagnosis. All this to say, breast cancer advocacy is WAY more complex than encouraging mammograms for early detection. Additionally, regular mammograms are indicated for women starting at age 50. While breast cancer is still statistically rare in women under 40, the number is growing and this population is more likely to be initially diagnosed with stage IV, partly due to the difficulty of having symptoms taken seriously at a young age. A woman in my support group was diagnosed stage IV at age 34. Her symptoms were feeling tired and a little more unusually full after eating. Turned out she had breast cancer in her ovaries, uterus, abdomen, and the top of her vagina. Outcomes are better if one’s axillary lymph nodes aren’t involved, but one can have little or no activity in the breast and cancer in the lymph nodes, just as one can have a large tumor in the breast and no lymph node involvement. There is no formula, so my goal is to educate my community that the way to end breast cancer is by giving to metastatic breast cancer research, and research in search of more genetic mutations and the targeted therapies to treat them.
The other aspect of working locally is near and dear to my heart, and that is being directly useful to others in a tangible, quantifiable way. To this end I intend to start and sustain a yoga group for people with MBC and possibly other stage IV cancers, given the small size of my community. Yoga is a way to be socially and physically engaged in a life affirming activity. Cancer is a lonely, isolating situation. I know this. I have had days in which the only people I saw outside of my family were my yoga teacher and fellow students. Taking this idea a step further, I’d like to combine the camaraderie and understanding that comes with being with others with advanced breast cancer with the proven benefits of yoga as a mind/body cancer therapy.
Finally, this year on October 13th (metastatic breast cancer awareness day), there will be a die-in here in Astoria, Oregon. I know that others from my training group are organizing die-ins on this date as well. We’ll help the global piece along with social media. I intend to offer an opportunity for a high school student to help me stage it as their senior project(not for the faint of heart!). Admittedly, it’s a mutually beneficial arrangement. I need the help, as I’m pretty easily fatigued. And, the opportunity to involve young people, the school community, and the community at large in this project expands awareness exponentially and will hopefully swell the coffers of Metavivor, which directs 100% of donations to MBC research grants.
To whit: There can be no prevention of or cure for breast cancer until we know its cause. We cannot know its cause until we know why the 30% of patients whose cancer metastatizes does so, be it initially, months, years, or decades after it is diagnosed. We cannot learn this without direct and substantial funds, both public and private, dedicated to research on metastasis. And we cannot expect this funding to happen until we force the conversation about breast cancer to change, one person, one community, one training class of advocates at a time.