Paralyzed or Catalyzed?

Diagnosed with breast cancer in May 2008, two of Lisa Valentine’s seven sisters have also had breast cancer. She is an active member of the Hastings, MN Breast Cancer Support Group, which created the DVD “Voices of Hope” in early 2010 for newly diagnosed women. Over 5,000 copies have been distributed (see www.hastingsbreastcancer.com). Opting not to have reconstruction, Lisa appreciates the words of mastectomy-as-reality writers Audre Lorde and Tania Katan. With a B.A. in Social Science and a M.S. in Guidance and Counseling, she currently works as a school counselor. An avid runner, Lisa has completed ten marathons, five post-cancer. A lifelong writer and poet, her recent publishing credits include opinion essays in the Minneapolis Star Tribune and The Des Moines Register. Lisa blogs about gratitude at http://habitualgratitude.blogspot.com. Lisa Valentine has written three essays for the Pink Ribbon Blues Blog: “What Lies Beneath” examines cultural expectations about women’s breasts and her own decision about mastectomy and reconstruction; “I Didn’t Know Then What I Know Now” shares how she transitioned from being an avid Komen supporter to a new kind of breast cancer advocate; and her essay here, “Paralyzed or Catalyzed,” which argues that acknowledging societal fear of death and using it as a catalyst for change is another way to confront the entrenched pink ribbon culture.

Before the pink paralysis sets in for good this month with another troubling display of breast ogling videos and pink parades, let’s stop, think, and regroup. We need to pull ourselves out of the stagnant, murky waters of pink-overload, misinformation, and misappropriated funds that flood mainstream breast cancer awareness campaigns and fundraisers. But how do we confront the entrenched culture and industry that fuels the pink ribbon? How do we dislodge ourselves from its eminent influence and light-hearted appeal?

Dare I say, fear?  Not the fear mongering used to influence the opinions and actions of others towards some specific end. That’s a marketing strategy. I’m talking about acknowledging the very real fears that are part of breast cancer. Risk. Incidence. Treatment. Side effects. Physical impairment. Recurrence. Financial problems. Life problems. Death. All those things that go along with cancer; none of which are pretty or pink. Facing these fears rather than looking away or falling into a catatonic daze of pink-washing, acknowledging what is being called the elephant in the pink room, and giving voice to the women and men with metastatic disease are actions that will make a difference. How about acknowledging our societal fear of death and using it as a catalyst for change?

There is no greater fear when it comes to cancer than METASTASIS. Cancer that spreads to other organs of the body and threatens to take your life is a big, bold, and terrifying potential for many and reality for many more. Certainly there has been progress in breast cancer treatment, but it is not in line with the billions of dollars raised or the hope for a cure that has been the rhetoric of choice for the last three decades. Roughly 2 percent of research funding goes to the study of advanced breast cancer, yet it is the disease that kills about 40,000 people per year. Why has there been so little progress when it comes to saving these lives? Cancer cells are stealthy and wily. It will take more than paltry research funding to figure them out. Have we forsaken the dying to perpetuate a false sense of progress? Because it’s a better sell?

Society has reached pink saturation. High levels of so-called awareness tend to focus on fundraising for the sake of fundraising, symbolic displays of support, and hope against hope for some miracle cure. Without one, early detection advertising is sold as the next best thing. But mammograms don’t prevent cancer. They certainly don’t cure breast cancer. They simply detect breast cancer and not even all that consistently or effectively at times. And misinformation abounds.

How many of us would know from awareness campaigns that a cancer that stays in the breast is not deadly? The breast cancer that kills is (stage 4) metastatic breast cancer (i.e., when the cancer spreads to lungs, liver, bones, or brain). Roughly 30 percent of those initially diagnosed with “early” stage breast cancer end up with metastasis. This can happen two, six, or twenty years down the road. Up to 10 percent of breast cancer cases are Stage 4 at initial diagnosis, and there are over 150,000 women and men living with metastatic breast cancer in the U.S. today. Some people with metastasis can live for ten or more years but the disease is terminal and the average prognosis is only 2-3 years. How many of us know, really know, these facts and that there is no stage 5?

Instead of working to end breast cancer or keeping people from getting it in the first place, mainstream awareness campaigns tell the public to have a party, give money, buy pink stuff, and then celebrate the Cause itself. Yes, the breast cancer movement has been so successful that we are literally celebrating the idea of Awareness. Happy Breast Cancer Awareness Month everybody! It’s too much of a good thing. Now we celebrate survival and the sense that the right fight means victory. We are forgetting an entire population of people who will not win their personal war against this disease. It is a slap in the face to imply that those with a Stage IV diagnosis failed in some way, weren’t strong enough or courageous enough. But that is what current emphasis on smiling survivors and hyped hope inadvertently does, isn’t it?

I was diagnosed with breast cancer and lost my breasts, so I understand wanting reinforcement that you are among the living. I am glad to be alive. I even celebrate important milestones in my life. But breast cancer is no cause for celebration. Especially when we look away from those who are dying from the disease to keep the ribbon from losing its satiny sheen. Many of us know someone who has died of metastatic breast cancer. They have names like Deb, Tricia, Carol, Elizabeth, Theresa, Kim, and Rachel. They have loved ones who miss and mourn them. Two of my sisters and I were diagnosed with breast cancer in the last eight years. Sister #1 got her diagnosis in 2004, sister #2 in 2006, me in 2008, and sister #2 had a primary lung cancer in 2010. Do you see a pattern here? That’s three of us. And our other five sisters, along with fourteen nieces and a growing third generation We could just celebrate ourselves and buy in to the pink industry. Or, we could have a healthy fear of this epidemic. Healthy enough to take part in a breast cancer revolution.

The climate of breast cancer culture is evolving and much has happened since last October. Notably, Susan G. Komen Komen for the Cure has lost its luster and clear leadership position in the breast cancer movement. The charity strives to repair its damaged reputation but it’s probably too late. The conversations have already changed and they continue to change, leading to a new kind of activism that begins with words. One of those words–the “M” word–needs to move front and center. Metastasis. Don’t let fear of the truths about breast cancer paralyze you. Let them serve as a catalyst for health choices, heightened awareness, and inspiration to put your voice to use. As our voices build to a crescendo, we can all help raise the volume and change the tune. Real fear, voiced and acknowledged, can lead to real action and reason for hope.

Will you join me?

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7 comments to Paralyzed or Catalyzed?

  • Thank you, Gayle, for your tremendous advaocacy of the MBC world. And thank you, Lisa, for your well worded effort to bring metastatic breast cancer to the forefront. People are indeed realizing our community can no longer be ignored. And the more we put our facts in front of them, the more progress we will make.

  • Lisa, this is so well written. Meanwhile your work Gayle continues to be so important to telling the truth about pink culture as educated advocates listen and unite to get the word out to bring MBC to the forefront. Thank you!

  • Camille Miller

    I have read this article as well as another you wrote “I Didn’t Know Then What I Know Now” and I thank you for putting your thoughts down into such clear, understandable language.

  • BlondeAmbition

    Lisa, you’ve done a masterful job articulating what has conflicted so many of us who have taken a journey down the pink rabbit hole. I’m happy that Gayle published it and I hope that this will be shared and used to tone down the rhetoric and encourages organizations to engage in something meaningful rather than perpetuating awareness for awareness sake that masquerades as symbolic support. I’m wondering if an idea for a campaign might in fact be to blow the myths of awareness out of the water (early detection stats, etc.) and exposing them for the marketing propaganda that they are, the cost, etc. and their low return on investment (ROI). Something akin to the Mastercard campaign that details the expense of a hypothetical, grand-scale “awareness” event and at the end, “Cost of a single BC Diagnosis: $1,575.63″. Maybe that would grab people’s attention and illustrate that this is NOT a good use of donations.

  • Lisa,
    Wonderful post. It’s simple really isn’t it? We need to keep telling the truth and that means telling all of it, not just the “sanity pink” version of it. Thanks for your eloquent words, Lisa.

  • Jymme

    Lisa,

    You’ve done it again. Great piece. I so appreciate that you can articulate so well what I just feel angry about!

  • Elena

    Thanks for stressing the real issues and the real hypocrisy of corporations that exploit people’s suffering, conscious, and unconscious fears to sell more products and direct a small percentage of earnings towards people without insurance “getting mammograms” (the tip of the iceberg that is breast cancer) or “find a cure” (do they have any idea of the differentiation between types and stages of breast cancer alone?).
    What people need is a health system reform, clear, objective information, and available resources. Not stupid pink ribbons and fake commercials of “sorority spirit”.
    Recovering from Her2 Stage 3A – and very lucky to have a good insurance that allow me to be operated and treated in one of the best facilities in the country.

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“Pink Ribbon Blues,” Book

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