Fran Visco: Why Does Accountability Matter?

NBCC Preisdent Fran Visco

As National Breast Cancer Coalition Fran Visco explains, we  must continue to demand accountability – from our elected officials, and from ourselves – if we are going to bring an end to breast cancer by 2020. I know I’m not alone in suffering from Komen Fatigue Syndrome or dreading Pink-tober, but we can’t rest quite yet.

Fran Visco: Why Does Accountability Matter?

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The War on Cancer

ImageIn the way that our blogosphere seems to build from one post to another, Marie at Journeying Beyond Breast Cancer recently shared thoughts about the language of “survivorship,” and leads right into some thinking I’ve been doing this week.

All this talk about language, and I’m a bit stuck on the issue of “war” verbiage. I sense there are those who are “fighters” and those who are “living with” cancer. I respect both deeply, and hope for a time when they can respect one another!

I have been vocal (can we be vocal in writing?) in my frustration with the “war rejectionists,” if you will. If fighting a battle against cancer doesn’t work for them, then without question they should find language that is more fitting or comfortable. But they need to leave others to use the language that fits. I wonder, too, whether war language is easier to critique when treatments are behind you, and perhaps something that is particularly beneficial for those of us in treatment. As I read the comments on Marie’s earlier mentioned blog, it was not lost on me that most of the feedback was from women who were NED, their cancer treatments behind them. To continue my own analogy, they are no longer in the trenches. Like great generals, they can step back, be objective, wonder what the war was all about and how to move forward.

So, as someone who is back in treatment with no end in sight, I find the “living with cancer” language a tough pill to swallow. Breast cancer cells have taken up in my bone marrow. They have begun to erode my pelvic bone. They are in perfect position to spread to other vital organs. 75% of women in my condition are dead in 5 years. I do not, under any circumstances care to “LIVE with my cancer.” I want it DEAD. Completely. Annihilated. Gone. It is most unwelcome and I am not interested in living with it, being kind to it, or making peace with it. I don’t want these cells to settle in and feel comfortable.

So, I’m not prepared to see myself as “someone living with cancer.” I would much prefer to be killing it. Doing so, for me, is active and empowering. Killing cancer cells is what my body needs to do to save my life.

Help Me Pay It Forward

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Do you remember the early days of your diagnosis? Your head wouldn’t stop spinning out scenarios. Nothing made sense. No one really understood.

Through the miracle that is twitter I’ve run across any number of people who are in just that place The one who inspired this post is a husband of a newly diagnosed woman. I am blessed to be able to support him, as well as others, assuring them that they are not alone.

My question for you is this: whether you are a survivor, caregiver, parent, child, doctor, patient, or #fearlessfriend, if you could offer one word of wisdom, what would it be?

363 Points Down

I has been nearly ten months since every breast cancer patient’s worst nightmare became my reality.

I can still remember looking behind me at the evocative 5-year mark, as tamoxifen came to an end and there was nothing but life ahead of me. I had dodged a bullet, and while there were still pesky follow-up visits, each day was a step closer to being “cured.” My heart ached for those who were not likewise blessed to have life after cancer, and even as I inched my way further and further from treatment, I vowed to never take my good fortune for granted. That is, of course, all it was. It could just have easily been me. In fact, it just as easily became me.

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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

Life On the Margins

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It has been an incredible few days at this year’s National Breast Cancer Coalition (NBCC) Advocacy Summit. From meeting wonderful “virtual” friends at last, to briefings on the cutting edge research and progress toward Deadline2020, both my heart and mind have been expanded. Tonight is our annual celebration, and tomorrow we will be on Capitol Hill making our final push on behalf of both “The Accelerating the End of Breast Cancer Act” (HR 3067) and continued funding of the Department of Defense Breast Cancer Research Program. Overall, I have to say…it’s been AMAZING.

BUT…

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February 7, 2002

The room is dark, a desk divides us. He sits, looking down upon me. “You have to stop crying and focus,” he exhorts. I feel the tissue against my face. Where it should be soft, a comfort, it is rough against my already-chaffed skin. Too many tears have fallen. I can’t cry and focus at the same time? I am confused. I can think of nothing but his admonishment, and I cease to hear his words. I know I must capture this information, but I can’t. I shouldn’t be crying?

Doesn’t he know I’m going to die?

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When Mom Has Cancer

There is nothing easy about having cancer, from the time and energy devoted to treatment, to the near-limitless array of side effects, to life-long complications, and the ever-present wondering.

In truth, I have been remarkably lucky. Though the chemotherapy I underwent 10 years ago was wrought with many of the typical side effects, none have endured. Bilateral mastectomies and reconstruction were certainly not easy, especially in a post-chemo body, but that is long over and I’ve had no lasting complications, save the risk of lymphedema. I was spared radiation (saved for another day), and five years of tamoxifen was far easier on me than many other women I know. I certainly hoped that cancer was in my past, but that was not my fate. Treatment for metastatic disease has brought on the discomfort of hot flashes and night sweats, and I fear the day when they can’t access a vein in my arm and worry about future drug resistance. Each tumor marker and scan brings on anxiety over the possibility of further spread (but also the promise of NED). But all in all, I have no pain and my treatments do not limit my activities in any way. In fact, to look at me you would never guess I’m sick at all.

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When the Other Shoe Finally Drops

New to my blog? Here’s the background on today’s post: http://wp.me/p1ADsf-60

Blessed are You, Adonai Our God, Sovereign of Time and Space, who fashions humanity with wisdom, creating within us many openings and cavities. When our openings do not open, when our bodies are blocked, it is impossible to survive and continue to live as a blessing to You. Blessed are You Adonai, Sovereign Healer, who has given us bodies which function, and who creates wonders and miracles.*

“Relieved,” I answer. More than anything, I am relieved. My response is greeted with skepticism, but it’s true. I know it’s probably not what I am “supposed” to feel…and it sure as hell isn’t what anyone else is feeling, but I am. Only those closest to me and those who have been there don’t respond with shock or puzzlement. I’ve been waiting, and I’ve known it has been coming. It has been a very long two years.
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