Every Silver Lining Has A Cloud

Cumulus Clouds: www.carlwozniak.com

Much of my life revolves around cancer, both professionally and personally. My ongoing research of breast cancer culture and industry that started over a decade ago entails an immersion into the topic that involves incessant reading of medical studies, news articles, advocacy materials, public policies, and personal stories as well as systematic observation, interviewing, writing, and networking. It is my everyday work. Cancer also permeates my personal life. Many of my colleagues over the years and some of my closest friends and family members have dealt with cancer diagnoses, treatments, and the lingering effects of the disease and/or the medical interventions that were intended to slow its progression. Cancer has shaped their lives in fundamental ways. Since these people are important to me, their experiences affect me too as I try to be understanding, supportive, and of use. As I continue to research the social and cultural aspects of cancer, the personal and professional form a juncture that informs my perspective.

A while back I wrote an essay about Elizabeth Edwards’ death from stage 4 breast cancer. After an initial breast cancer diagnosis in 2004, Ms. Edwards had a recurrence in 2007 and then died of the disease in 2010. Her death opened up a brief discussion about the metastatic segment of society—those for whom miracles, affirmations, and modern medicine fail with overwhelming regularity. Yet, as I wrote then, “There is a strong societal push to see the cancer glass as half full.” There are always announcements about new therapies, great treatments, and a new era of personalized medicine that lend credence to the belief that incremental advancements in medical science signify imminent triumph in the war on cancer. Uncontextualized survival statistics and hopeful attitudes are alluring to a society that fears cancer and desperately yearns for salvation. This response is understandable even if it is not necessarily realistic or practical. “A glass that is half full is also half empty.”

I am reminded of the multifaceted aspects of cancer almost every day. My loved ones and acquaintances organize their lives around cancer. Medical appointments and tests scatter their calendars. I too await the results. Some endure multiple surgeries, imbibe unpredictable pharmaceutical cocktails, and submit to myriad and sometimes experimental therapies. I witness their effects and listen to their reports. Some have had to alter their activities significantly, change their careers, or retire. Others do not have this luxury and instead continue to work despite fatigue, difficulty, and pain. I observe their experiences, and offer help when I can. All of these people manage side effects, some of which emerged long after their treatments ended. I smile in relief when I hear the news that there is “no evidence of disease.” We agree that for now, that news is “good enough.” If we can’t cure cancer, at least we might hold it at bay for a time. I quell my sense of dread when another person I care about moves into that spiral of medical emergencies and unanticipated cancer developments—that chronic state of affairs when emergency room visits, body scans, pain, and thoughts of death become more regular. And then, cancer takes another life. Another friend. Another colleague. Another person I care about. It’s all too overwhelming at times. And, I don’t even have cancer. Not yet. Not that I know about.

I don’t want to lose more people. I don’t want to attend another funeral, give another epitaph, have another moment of silence, and shed more tears. But I will, and many of you will. Indeed, every silver lining has a cloud.

Cancer is a human evolutionary condition. It is also an epidemic rooted in a society and culture that fails to recognize it for what it is and what it is not. Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is a life-changing event; a disease process that ignites what is all too often a cycle of medical surveillance and interventions, of which some succeed and others cause irreparable harm. For 65 percent of those who are diagnosed, it will be the eventual cause of death. To ignore this reality for the sake of convenience, feel-good activities, fund-raising, ideological or political grandstanding, or profiteering is to alienate, burden, deny, and forsake those for whom cancer is a major cause of suffering. They deserve better than this, and so do we.

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14 comments to Every Silver Lining Has A Cloud

  • Oh, Gayle…your words are all too true. Even after getting some good news myself today, that my latest mammogram was negative, I feel very heavy-hearted now, exhausted by the stress of getting myself to all my follow-up tests and appointments, by the knowledge that I’ve only got a reprieve until the next test, by the acute awareness of friends who have died, or are newly diagosed, or are struggling with debilitating side effects and metastatic disease. There is no reprieve from all this. This is what real ‘awareness’ is, like a stone in one’s heart.

  • This post astounds me in its authenticity. “Much of my life revolves around cancer, both professionally and personally.” That in itself is an amazing statement and at times I’m sure is an incredibly daunting reality as well. Your non-wavoring voice of reason is bold, research based, compassionate and greatly needed. You continue to remind those who will listen about what the cancer experience is and what it is not. I thank you for that.

  • gayle,

    this is so beautifully written, perfectly expressed. thank you for the work you do on behalf of women with breast cancer.

    xo

  • Jan

    Gayle, your post touches me deeply and raises my concern, my “awareness”, and, yes, my anger that we have allowed ourselves to become so caught up in the consumer culture of pink at the expense of more funding of research FOR A CURE! Thank you for your continuing voice of clarity and compassion.

  • Cancer is a human evolutionary condition. It is also an epidemic rooted in a society and culture that fails to recognize it for what it is and what it is not. Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is a life-changing event; a disease process that ignites what is all too often a cycle of medical surveillance and interventions, of which some succeed and others cause irreparable harm. For 65 percent of those who are diagnosed, it will be the eventual cause of death. To ignore this reality for the sake of convenience, feel-good activities, fund-raising, ideological or political grandstanding, or profiteering is to alienate, burden, deny, and forsake those for whom cancer is a major cause of suffering. They deserve better than this, and so do we

    Perfectly stated, nothing more that I could add…

  • Gayle,

    I love this posting. It is so heartfelt, and your voice has helped all those of us affected by cancer — which is everyone it seems nowadays.

    I especially love the following quote: “Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is a life-changing event…”

    Society likes to “dumb down” cancer so it comes in a neat little package, just because people are afraid or in denial. Cancer is certainly life-changing and never is fun. I’ve experienced and witnessed too much suffering to reduce cancer to a nice little package of, oh let’s say, perfume.

  • Gayle,

    This is just what I needed to read today as I prepare to go to the funeral for Ashley: Warrior Mom this morning.

    “I don’t want to lose more people. I don’t want to attend another funeral, give another epitaph, have another moment of silence, and shed more tears. But I will, and many of you will. Indeed, every silver lining has a cloud.”

    Indeed.

    Katie

  • Wow. This post is amazing. You are doing amazing work, and we’re all learning from you. It’s a tough journey for us all, and you certainly articulated what it feels like to live in a world that seems absolutely dominated by cancer. I know it will get better in our lifetime. Keep up the great work.

  • Gayle,

    This was a stunningly elegant post, filled with compassion and much truth. Thank you.

    Maureen

  • It is quite simply an honor to know you and your work. Your immersion into this world is not for the faint of heart. But your steadfast attention to the facts and your willingness to be an opposing voice in this pink wilderness is proof of where your heart lies. With those who deserve better. Yes. Let’s amplify.

  • Thanks Gayle for all you do. I do not want to lose more people either. You remind me why I write. Thanks.

  • The world needs to hear your words, and I know they come forth freely but at a price. It’s hard for all of us to live in cancerland, something most people don’t understand. We aren’t from Texas or New Jersey, but Cancerland where we worry about what we eat, if we’re getting enough exercise; are we doing everything we can to prevent recurrence; could this sore spot be “it?” Life in Cancerland is difficult and taxing for us and all of those who love us.

    Thank you for your voice.

  • Thank you for your comments on an essay that was both difficult and necessary to write.

  • Gayle – I’m with Allie – the last paragraph is classic prose – made me pause and think of my ‘sister” friends – even with their most unwavering faith and positive attitude – wearing their pink ribbons and lighting luminaries could not change their destiny – death from a chronic disease after a diagnosis of late stage cancer. 38% of breast cancers diagnosed in the US are at the regional stage where the cancer has travelled outside of the breast. That is why we do our work at Are You Dense to make sure that each woman has access to reliable tools to find cancer at its earliest stage when most treatable and survival in the highest.
    I read your book in October, 2010 – so much truth – applaud your mission.

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

** MORE MEDIA LINKS **
** MORE RADIO INTERVIEWS **