We asked two members who are part of our pilot Speakers Bureau program to share how they came to Breast Cancer Action, why they got involved in the Speakers Bureau, and their thoughts on breast cancer advocacy and the issues most important to them. To learn more about the Speakers Bureau program, get in touch with our Education and Mobilization Coordinator, Sahru Keiser.
Member Perspective: Lori Marx-Rubiner
I am 46 years old and originally from Chicago. I’ve lived in LA since 1988. My husband John (married nearly 25 years) is, in a word, amazing. He’s who has lifted me up, dragged and supported me not only through every minute of my cancer journey but also through all of the advocacy efforts; he’s a very good sharer! Our son Zach is 14 and is as passionate as I am about changing the face of breast cancer so that other children don’t ever have to live with a sick mom. They are my greatest blessings.
I was initially diagnosed with Stage II breast cancer in 2002. After chemo, bilateral mastectomy and five years of tamoxifen, I was “no evidence of disease” for about two years when my CA 15.3 marker started rising. We watched it go up over about 18 months before a scan indicated that I might have bone mets. A biopsy confirmed that in August 2011, and I’ve been back in treatment since then.
My introduction to Breast Cancer Action came by way of a donation made in my honor at the end of my treatment back in 2002. I didn’t think much of it, to be honest. That was until I saw what other organizations are like, how they capitalize on breast cancer sympathy, perpetuate the status quo, and do very little to focus on a cure. Many breast cancer charities, of course, focus their attention on supporting people going through treatment, and that’s really important work! But many others claim a “cure agenda,” yet fail to enact policies and fund projects that can make that happen.
I thought the Speakers Bureau would be an awesome opportunity to get the word out about how backwards and even counter-productive our “pink culture” has become. And since I like people, it was a great way for me to get out from behind my blog.
Cancer is defined by its propensity for change, and I fear that it will forever remain a step ahead of us. So while I’m not sure we’re going to cure it, I am nonetheless optimistic that we can do better. Much better. But we have to start caring more about our health and wellness than we do about our convenience. Perhaps my view is skewed by living within the cancer “bubble” but it seems to me we are seeing more and more cases, at younger ages, and more aggressive cancers. When our cancer rates in the “developed world” outpace those in other countries one has to wonder how much of this is about lifestyle. I’m not talking about blaming people for their life choices – there’s more than enough of that (just look at lung cancer!), but rather about our over-exposure to carcinogens. Here in California we have Prop 65, which requires businesses to warn consumers about known carcinogens in consumer goods, but these carcinogens are so pervasive that businesses such as stores and markets just slap a label on the building.
I want to shout from the hilltops! I’ll speak to anyone who will listen: we’ve got to change how we approach the breast cancer epidemic! We have to be wiser about how we treat the world around us because it’s all one system and it comes right back to how we treat ourselves. As someone with metastatic breast cancer, it’s too late for me. My cancer is considered incurable; it is my life’s companion now. But by using what time I have, while my health is still strong, I hope I can empower all of us to act before this epidemic gets even worse.
Member Perspective: Teresa Peters
Note: Teresa Peters died of metastatic breast cancer in December 2013. She was outspoken about her experiences with breast cancer and was actively involved in BCAction both as a member and as part of our Community Leaders for Change program. We will miss her enormously.
I was diagnosed with breast cancer in 2009, and now live with metastasis in my brain, bones, and lungs. The cancer slowed me down, but generally I am thriving, living with few symptoms, and well beyond the dire predictions of several doctors. I do a mix of conventional and “integrative / alternative” treatments, but never did the traditional cytotoxic chemo or the full deal radiation, against the advice of medical professionals and other well-meaning people. I think that conventional treatment saved my life, but the other things keep me healthy now: nutrition, exercise, limited exposure to environmental toxins, and mind-body medicine. I’ve had a pretty hard road at times, bucking the conventional system and choosing my own path. I have done a ton of research and learned a lot. I am a very well-informed patient, and take personal responsibility for my health and I own all of the treatment decisions that I make.
I was born and raised in Ohio, but lived away for 24 years — I came back here to Ohio to regroup after a failed marriage and the cancer diagnosis, and ended up staying. I’m fortunate now to have a great relationship, to be involved in my community, and to be surrounded by strong supporters.
I was originally attracted to BCAction because of the Think Before You Pink® campaign. I am offended by the commercialization of breast cancer, and I have tried (with mixed success) to explain my concerns about “pink” campaigns to friends and family. I don’t think it’s OK for a company to sell a pink product with breast cancer branding on it and give only a small portion of sales to support cancer research, let alone get away with some of the awful ingredients in the products that they offer. Pink ribbons are so often a sell-out.
I found that when I voiced my own concerns with many people regarding “pink” campaigns, my opinions met with contempt. Pink has become synonymous with supporting breast cancer patients and obviously, supporting women with breast cancer is the right thing to do. Pink ribbons are just the wrong way to go about it. I was heartened to find in BCAction an organization that was speaking my language and that understood where I was coming from and was raising the alarm about it. I feel that the sole focus of the conventional cancer system on finding a cure is misguided. It is offensive to me that toxic treatments are pushed on women so adamantly by the cancer system. It seems ridiculous to not talk about prevention, as we watch the numbers continue to rise. I liked that BCAction brings the critical issue of prevention to the table.
In 2012, when I won the Environmental Watchdog Award in Ohio, I reached out to BCAction to share what I’m doing and see if there was anything I could do to help BCAction further its work, essentially just as a kindred spirit and friend, and was asked to join the Speakers Bureau. I joined because I believe that we can all do more together than we can do alone and I want to be part of a bigger effort. I know I can learn from BCAction and the other speakers, and I hope I can bring something of value to the group as well.
I feel good about being associated with a group that is so aligned with my values and core concerns; I think BCAction is hitting on some of the most important topics in the cancer arena. I’m glad that BCAction is a little “in your face” about it, and a little angry, because I am too. I want to be part of disseminating the great information and messages developed by BCAction, and I also want to have BCAction’s expertise behind me to support me in my own thinking and work.
Generally, I want to use my voice as someone living with metastatic breast cancer to say pharmaceutical cures are not enough. We must focus on prevention. We must address the toxic soup. We must make sure that we reach everyone, so that poverty is not a death sentence.
I want to support people who choose non-toxic treatments. We must give women the freedom to choose less toxic and alternative treatments with the same level of support we give to those who choose the current “standard of care” treatments. I have felt brow-beaten and disrespected by health professionals and many well-meaning others who have discouraged my non-toxic approach to cancer treatment. I don’t disrespect women who choose chemo, why should I be disrespected for not choosing it?
Hydraulic fracturing, or fracking, is one of my key issues and I want people to think before we put those chemicals into the earth to potentially contaminate our water supply. Another of my issues is local food and I want people to understand the connections between environmental issues and our food supply, what we all can do to help local farmers move from commodity crops to raise food sustainably and humanely, how we all can raise a little of our own food — and why all this stuff matters to our health. I want to raise awareness about what we are doing to the next generation with this huge toxic science experiment we are running.
The cancer system is an enormous money-making machine that is very effective at manipulating public opinion, and I worry that at best they are missing an important part of the point and at worst they are corrupt. I think that a team of smart people who aren’t afraid to buck the norm a little can make a big difference. We can see what is happening to the planet and how it is affecting human health. We must act to protect the next generation. We need to tap the power of educated moms and grandmas to drive change. We need to tap the power of authentic voices based on real experience. I have been reticent to tell my story: who am I to speak up? Will I say the right thing? What if I sound dumb? What if I am criticized? But I am trying to live more fearlessly these days and I’ve decided to dive in, do my best, and hope that the people around me will be there to help me when I need it. My message to people? Join me.