Of Ice Buckets and Silent Patients

Barbara Brenner, the first full-time Executive Director of Breast Cancer Action was a 2-time cancer survivor who died of ALS. Even when her voice was silenced by the disease, her writing continued to educate and inspire. She never stopped asking the tough questions, and persisted in her demand for answers. She is missed.

Even as our Facebook feeds rapidly fill with videos of some very cold people (as well as some Three Stooges-grade comedy), the controversy of the ALS Ice Bucket campaign is being challenged.

My take: people have done stranger things for a cause – buying and using carcinogenic products for “the cure” comes to mind. 

Wasting water? Some – yes, absolutely. But I’ve also seen friends stand in a pool and use pool water so that everything but what soaks their clothes is recycled.

Taking away from other charities? That could be. But if you didn’t know before, you probably do now – ALS is devastating. It is like dying from within. While your mind stays sharp, your body parts lose function – use of limbs, voice and even the ability to breathe are inevitable with this disease. I haven’t looked at the numbers in depth, but the ALS Association is well-rated and regardless, the needs of those living with ALS are most certainly worthy.

Are there better fundraising options? Probably. A campaign that will sustain the new funding levels would probably be the ideal option. And that may come. For now, the infusion of over $15.5 million dollars can, if used well, make a meaningful difference.

For me, here’s the biggest issue of all: while practically everyone has heard of Lou Gehrig’s disease, I fear too few of us knew what it was before the Ice Bucket Challenge began. Patients aren’t out and about much, and it’s easy to forget about them. Awareness and education, and helping ALS patients share their voice and their stories matters. It matters a great deal.

You probably know I’m not a huge fan of “awareness” campaigns – I do feel strongly that they need to be tied to action. As a person living with what is often referred to as a “bully disease,” I recognize that there are many levels of awareness. While we are all of breast cancer, inflammatory breast cancer, metaplastic breast cancer and metastatic breast cancer (to name a few), typically remain shrouded, and are not given the attention the severity of these diseases demand.

So, the ice water part is all in fun, but let’s pay careful attention to the heart of the matter: giving voice to patients and supporting an under-funded disease. If you don’t know what it’s like to live with ALS, please watch this video: 

OUTRAGE!

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In 2012 METAvivor launched it’s “Elephant in the Pink Room” campaign to highlight that despite pervasive awareness of breast cancer thanks to both legitimate awareness campaigns and “Pinktober” marketing, what we still try to ignore is the reality of getting, living with and dying from metastatic breast cancer.

This morning I discovered that the campaign was essentially stolen by Kohl’s Department Stores to “fundraise” for Susan G. Komen and I am truly outraged! (Find the Kohl’s Cares campaign here.) First and foremost, it is disgusting that Kohl’s would impinge on a small non-profit organization’s pre-existing campaign in such a blatant and unethical manner, and do so to sell more products (like their “pink elephant” necklace) and direct “charitable” dollars to another, behemoth of an organization.

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#BCNext

We are constantly confronted by “breast cancer marketing,” the barrage of pink, from funding free mammograms and research, to supporting individuals with cancer, some of whom can’t even afford child care and transportation to treatment. We range from those with strong family histories, whether BRCA positive or not, to those enduring treatment, to long-time survivors with metastatic breast cancer, to those we have loved and lost. We are each the face of breast cancer.

In America, and I presume elsewhere, there is a great divide between those of us on the ground, living with and dying from cancer – and the other side of breast cancer, those who make funding decisions and allocations of both donated and allocated dollars, private, public and NGO.

If you could have their ear for a moment, if you could tell them what YOU think, what YOU see, what YOUR breast cancer priority is? What if your voice, combined with others like you, like me, could help influence our future?

Comment below or tweet to #BCNext to join the dialogue and spread the word! Let your voice ring out!

Beating a Dead Horse

For most of us the days of being told how to live our cancer journey fell away when our treatments were over. Gone are the frustrating moments when well-meaning friends and strangers at Starbucks offer remedies, alternative therapies, and all manner of unsolicited advice.

But when you have mets, those opportunities keep on giving, until – well, until the treatment ends, and we all know when that is. Never.

So you can imagine my frustration by the wave of Good Samaritans, breast cancer survivors all, who seem to think that because they once had early stage breast cancer they are in a position to advise me about mine.

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The Antidote to Pink Fatigue

© Pam Stephan

October tends to be a stressful month for me. School is back in full swing with a panoply of activities requiring my chauffer skills. My program year at work begins in earnest, interrupted – good and bad – by a series of holidays. While I enjoy the celebration, the office closures don’t seem to change the work demands.

And then there is PINK.

It’s hard to explain why, as a women living with metastatic breast cancer, I don’t jump on the pink bandwagon.

It supports me, right? Well, no. Wrong. Remarkably wrong.

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Pink Responsibly 2.0

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Just as Thanksgiving starts in October, and Christmas at Thanksgiving, Pink-tober comes early this year. And I, along with a rapidly growing group of irritated survivors, am dreading it.

It’s hard to explain to people who don’t see how belittling the “pink party” can be, but I’m going to try.

If you read my post about firefighter Janette Neves Rivera’s plight to utilize the sick leave proffered by her colleagues, you’ll start to see what I mean. It is easy to think that the “pink awareness” culture surrounding breast cancer is, at worst, harmless, and at best a way to fund research for a cure. Neither is true…

Harmless?

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Celebrating the Ordinary?

(Sign the petition…you can come back to read later! Komen Petition)

I “cheated” my way through most of Marie’s challenge; I haven’t slowed down enough in the last few weeks to take photos of the ordinary things I’ve celebrated. But the awareness…paying attention to the “little” things around me…that I do.

However, it took all of 30 seconds to whip out my camera and capture this shot:

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Breast Cancer Action

For many who are serious about ending the breast cancer epidemic, Breast Cancer Action is near and dear to our hearts. BCA takes on some of the hardest issues related to breast cancer: from socio-economic status as a risk factor, to root causes in the environment and beyond.If you are not famliar with their work, please keep reading! Thanks to BCA Membership Coordinator Caitlin Carmody for today’s post.

Breast Cancer Action was founded in 1990 by a group of fierce and angry women who were living with and dying from metastatic breast cancer. They’d grown frustrated and angry. They wanted unbiased, comprehensive information to help them understand their diagnoses and treatment options instead of the inadequate and superficial information given to them. Together, in response to their shared anger, they formed Breast Cancer Action around a kitchen table. Today only one of those eight women is alive. BCAction proudly and fiercely continues the work they began. We are a national, grassroots organization with over 40,000 members who take action to end the epidemic. Our mission goes far beyond the notion of “the cure” to tackle the root causes of this disease and the pressing issues that must be addressed to make the systemic changes necessary to end the breast cancer epidemic. More

National Breast Cancer Coalition

There are countless breast cancer “charities” out there…from beheamoth organziations of international scope, to local support centers active in our various communities. NBCC is of particiular note as a stand-out national advocacy organization supporting an agenda of finding a cure, and I proudly join them next month as we work to move that agenda forward! In addition to Joy’s wonderful overview of NBCC, there are some valuable & important links to related projects and efforts.

NATIONAL BREAST CANCER COALITION
–by Joy Simha, NBCC Executive Committee

At The National Breast Cancer Coalition every bit of business we do begins with a moment of silence (MOS) to remember an incredible breast cancer advocate who has died since our last gathering. The MOS grounds us and reminds us about why we are there. And every day as I sit down to my desk to write, I look at the faces of all the women I know who have died of breast cancer. I also, in some cases, look at the faces of their children, because I know that I want to end breast cancer because they are without their mothers. More

Putting My Money Where My Mouth Is

The Susan G. Komen for the Cure news cycle seems to be winding down just a bit, with the latest reports focusing on Nancy Brinker’s excessive expense reimbursements and calls for her resignation. As the story evolved, I was often asked my opinion. Those who have supported friends and/or walked in races or purchased any of the myriad of Komen-endorsed products want to know that they’ve done good. They want to know that with the re-funding of Planned Parenthood (which appears to mean that PPFA will again be eligible to apply for grants in the future, with no indication that they will be funded) and the resignation of Karen Handel that Komen is once again the venerable breast cancer charity of choice. They want everything to return to business as usual.
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