The Outer Limits

As you all know I am the creator and curator of the infamous "Pink Boob Awards Gallery", where I archive the most heinous and downright ludicrous examples of pink ribbon and breast cancer awareness stuff.

Now before I am accused of blatant hypocrisy in light of the current "boobies" debate, I use the term "boob" in my British English mother tongue as a colloquial descriptor of a serious mistake or blunder.  The double entendre as slang for breast is completely intentional and is used to highlight the lunacy and deep irony of many aspects of the pink ribbon culture which I am confronted with on an almost daily basis.

In my never-ending quest to collect examples to showcase in the Gallery there are certain items which I consider to be "holy grails". The most extreme and hard-to-find-or-imagine examples.  Those which cause the mind to terminally boggle in such a way that could only be cured by an immediate lobotomy.

There is one item on my holy grail list, which I periodically search for, really hoping that I will never find, but knowing deep down that indeed I will find it one day.

Friends, today is that day.  Upon finding this item I didn't know whether to laugh or cry, and I hesitated in bringing it your attention.  But ultimately this blogs theme is breast cancer and the ubiquitous culture that we find ourselves involuntarily entrenched in, so I decided it was important to let you be the judge.

I want to be clear, that I am not judging the woman who is at the center of this very sad story.  This was her choice and I respect that.  I also want to warn that some readers may find this story and related imagery upsetting.

But this is where we are.  Pink ribbon culture has now invaded and gone beyond the outer limits of what I could ever have imagined.

So take a look, and if you are so inclined, please share your reactions.

Click here for the story.

How To Change The Conversation

Recently, there's been a lot of talk on this blog and others, about "changing the conversation" in the way that we, as a society, think about breast cancer and the culture surrounding it.  

What's becoming clearer to me, as I delve deeper into the vast online breast cancer community, is that there is a growing feeling, and what can best be termed as a movement to demand a refocus of existing priorities within the breast cancer fundraising world, and for certain breast cancer organizations to recalibrate their messaging about the disease itself.  There's growing support for the notion that it's time to start telling the truth about breast cancer, and move away from the pink ribbons and the pretty pink feel-good breast cancer experiences that seem to have become the norm, when portrayed to the general public.   

When I have discussed pink culture and breast cancer fundraising on this blog I often receive comments from people who are demonstrably incensed and want to know how our demands for change can translate into meaningful and tangible action.  Here's a small sample;

I'm beyond angry. Your work has opened my eyes even more. What do we need to do to make a change? and make a difference. This is so frustrating! Keep up the great work.

I'm offended by the Race ad. What the f? Why are they making it seem like something women should aspire to? It's cancer! The ad should have the other photo. That's what we're fighting for. I'm sorry, you didn't hear any answers worth your time. I'm sorry Komen continues to miss the boat on research dollar allocation. What's it going to take?

Unbelievable! I'd not heard of this pink town thing. I just feel deeply weary about this.... it doesn't change anything. Awareness? Tell me who doesn't know about breast cancer?

Your snark is delicious. This campaign? Not so much. Absolutely revolting. What fund will the donations benefit? Who's supervising? What a waste of time, energy, and altruism. Keep complaining; I'm with you.

Thank you for sharing these other voices. I applaud these women for taking a stand. I don't mind the "pink stuff." I just want MORE. When the "pink stuff" gets in the way of MORE, than I DO NOT like it and it seems that is what's happening of late. "Money talks" as they say, that's why I'm trying to encourage people to ask where their donated dollars are going in my post today on this same topic. It is time to change the conversation, move beyond the "pink stuff," demand more research and get more done on the goal of eradicating breast cancer.

[W]e need to do something to call attention to our problem (breasts chopped off, horrible drugs, intense pain, you name it). The best way is do that is get traction in the actual media. We need to forward stories about this to the health reporters at regular and/or cable news networks, magazines, newspapers and Internet sites including to the reporter above. Komen does this so to why not beat them at their game. If there is walk in your town, send an announcement to the news stations that your friends are sponsoring a stay at home and sending money to a better organization. Does anyone have media contacts? Do your friends? Spread the word. What about your doctor? My doctor resigned from the local American Cancer Society board. Can't we all do some lobbying with the medical personnel that we come in contact with. We also need to start asking rude questions like why isn't there more met research. What are they doing to push that forward effort forward. Did they report you to NHI? Why don't they sponsor local trials? The unions in Wisconsin know that a good media shot is protesters beseeching the capital (truth in writing if they don't win, we all might as well ship everything to China). It is worth a lot of publicity. Where is Komen located? What if we had people picketing in front of their offices with signs that say, "Stage IV BC Where's My Cure?" The same goes for Congress. The Breast Cancer Coalition collects funds to lobby Congress. They're too polite. Wouldn't it be better for their local affiliates to request appointments back to back with their local politician on their home turf. I'd say picket but most these offices have security that won't allow it. Something a lot easier is to start is a Facebook campaign and pass that along to everyone to get people to post or like. Has anyone thought doing a Twitter campaign where everyone starts Twittering at the same time on the same topic like, "Not Pink."If we start trending on regular basis we could really pique the media's interest. Sorry about this. I am sick of swapping notes on treatments. I don't want to fade out without a damn thing to show for the screwing that I have gotten (and not in a literal sense).....

Today, Gayle Sulik, author of Pink Ribbon Blues has published a "Tools for Action"; a comprehensive list of ideas of how we can go about "changing the conversation" in our everyday lives.  I encourage everybody to take a few minutes to read this list, think about what you can do, add your own ideas, and share it with your own communities.  These actionable items are the kinds of grassroots efforts that can lead to a major sea change  and compliments the advocacy work of organizations like the National Breast Cancer Coalition and Breast Cancer Action.

Come on.  We can make a difference, each and every one of us.

Miss Pink Elegance

This essay was created in collaboration with a group of writers and advocates who are deeply concerned about the lack of progress being made in the eradication of breast cancer.  We believe that it is time to look beyond the feel-good messages and demand real change.  

You may reproduce this article, in its entirety.  You may not make changes to it and you must include this attribution and a link back to the blog that posted it.  

We encourage you to spread the message and to take a stand.  Thank you for getting involved.   

This post is republished on this blog via Uneasy Pink.

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Recently, a story about an upcoming fundraiser appeared in a Pennsylvania newspaper.

A local Susan G Komen for the Cure Foundation® affiliate is hosting a fashion show, luncheon, and auction fundraiser later this month. In addition, they are crowning the first “Miss Pink Elegance.” Event co-chair Joanne Arduino explains:

"This year marks the first crowning of "Miss Pink Elegance," an honor that will be awarded to the guest wearing the best pink outfit...Guests can come in elegantly or outrageously in pink," she said. "The winner will be crowned Miss Pink Elegance the First. They'll get a sash, a crown and a dozen pink roses. We'll have someone who sings 'Miss Pink Elegance.' And she'll strut down the runway."

On first glance, the triteness of a fashion show and subsequent crowning seems an affront to the seriousness of breast cancer. If that’s all there was to it, this would be a simple matter of taste. Unfortunately, there's more to it. 



Sarah Horton, author of Being Sarah  had some insightful thoughts about fashion shows in her book. She references a blogger, JaneRA, who wrote about the issue of restoring femininity post-breast cancer and about Audre Lorde’s insight into the concerted effort to hide the physical impact of the disease.

"… [I]t’s the message behind this that upsets some of us. Jane refers to the central London offices of a national breast cancer charity, and the photos on the walls of the previous models, all smiling...you can’t miss the point that ‘ultra feminine, attractive, youthful and happy’ is how you’re supposed to look after breast cancer... Audre Lorde calls this a ‘conspiracy on the part of Cancer Inc’ for women to appear ‘no different from before’ and show the world that ‘nothing has happened to challenge her.' "(pg 239)

A lack of gravitas shown by this and many other pink ribbon fundraisers is only the tip of the pink iceberg. Fashion shows, parades and other celebrations are popular because people want to feel good, to believe that they can both have fun and make a difference. Kitschy fundraisers become popular and propagate. Eventually the dominant message becomes that breast cancer is a playful celebration; that women can not only be restored to a societal image of beauty, but that they can be better than before. In this instance, the best assimilated, most fully restored person who receives the most votes will receive a sapphire crown, a pink sash and a happy serenade. 



Harm is done to people who don’t fit this mold, who on top of having cancer receive blame for not surviving correctly. For many, the truth of breast cancer is not pretty. There are women who can’t or don’t have their bodies restored to their former glory. There are women who suffer greatly from side effects of the treatment, physically and psychologically. There are women, many women, who do not survive this disease at all. In fact, anyone who has received a breast cancer diagnosis is at risk for recurrence, for a metastatic cancer that won't be cured. And there are women who are uncomfortable, for a myriad of reasons, with the mantle of triumphant survivorship. For many women the words “guilt, frustration and anger” represent breast cancer; not “pink, fun and elegance.” 



Where do these women go for support? Who listens to them? Consider the words of Kathi from The Accidental Amazon.

"Fashion statements aside, once I became a person with breast cancer, it didn’t take long at all for me to develop a very low tolerance for all things pink. The sheer ubiquity of pink as the symbol of the fight against breast cancer is overwhelming. And one of the things that you discover... is that everyone ... seems to assume that you are now the local poster chick...everyone assumes that you have the interest, time, energy, inclination and funds to contribute to or participate in every bleeping event, cause, or group that is even remotely associated with helping everyone else not end up like you."

Kathi's realities of living with breast cancer do not fit in a festive environment. This "Poster Chick" is supposed to fight cheerfully for herself and for everyone else.

 Gayle Sulik explains in Pink Ribbon Blues.

"Telling an authentic story about an illness that is heavily laden with cultural expectations about femininity, normalcy, and triumphant survivorship requires a new way of thinking and speaking. Falling on the margins of the cultural framework, these kinds of stories can be threatening and hard to hear."  (p. 338)

Many of us, the well-intentioned and generous people who have been affected directly or indirectly by breast cancer, want to think that all of the money we’ve spent, all the tears we’ve cried, all the pink we’ve worn has made the world a better place. But few acknowledge the less-than-pink truth of breast cancer: the indignities of a disease that still kills, can happen to anyone and has no cure. The number of people dying from this disease has barely budged in decades. 



Until we change the narrative away from feather boas and pink roses, these petrifying facts won’t change. JaneRA, the blogger quoted by Sarah above, died in 2009. Audre Lord died in 1992. In fact, the WHO says that 460,000 people died worldwide from breast cancer in 2008. In Pink Ribbon Blues, Gayle Sulik states that despite more treatment given and more money spent, a woman "with invasive breast cancer has about the same chances of dying from the disease as she did 50 years ago.” (p. 159)



So where do we start?

Criticizing breast cancer fundraisers can be tricky. After all, what works for one person may not work for another. Empowering people’s authentic selves means making room for a diversity of opinions, but it also means speaking up fiercely against the agents of disempowerment. 



Apart from the complexity of nuance, it opens you up to the risk of being labeled bitter, angry or plain ungrateful. This recent blog post  labels people who question the dominant system “anti-pink.” Gayle Sulik, author of Pink Ribbon Blues.  “Anti-pink is a call to ‘think about pink’–to look at all of the outcomes of how we as a society are organizing around the cause of breast cancer, the positives and the negatives, so that we might recalibrate our actions to make the most of the positives and minimize the negatives.”



We need to make room for the darker shades of color palate. We need to think about pink. Before being swept away by feel-good celebrations swathed in pink, consumers and philanthropists should ask themselves some basic questions.



- Where is my money going?




- What has the organization done to prevent or eliminate breast cancer?




- Does this organization support people with breast cancer at all stages?




- What is the organization’s mission and how well does it live up to it?




- Does the organization use evidence to inform its actions?




- Do I want to support this organization and its messages? 



For more questions to ask, see Breast Cancer Action's Think Before You Pink website.  

The answers to these questions might be uncomfortable and unpopular, but they are the only way to get to the truth and, ultimately, progress.



JaneRA
1949-2009

Consider JaneRA’s final words in her posthumous post.

[N]ot for you are the appearances in Fashion shows…airbrushing the reality of this disease into some designer must-have condition. You will decide on a harder more radical route … a movement will begin to challenge governments, and research scientists, the medics and the charities...



Winding forward to say 2050, I hear you talking to your grandchildren about the old days when breast cancer still killed, and generations of women died years too soon.

Now we have a choice. Will we put our heads in the pink sand and lull ourselves into believing that fashion shows are good enough, or will we stand up and demand real change?

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How Being Sarah Came To Be

Through writing this blog, I've had the pleasure of "virtually" meeting so many incredibly talented, intelligent and interesting women.   Many of these women are also bloggers, and we enjoy flitting around cyberspace and visiting each other's sites, catching up on the latest news, engaging in lively debates, talking about life's highs and lows, appreciating and commenting on each other's writings, despite completely different styles and perspectives, and providing a wonderfully powerful network of support, helping each of us make sense of our cancer ordeals.  Many others visit our sites simply to read, reflect, and perhaps to remind themselves that they are not alone with their thoughts and struggles with this disease.

Indeed Chemobabe just published an amazing post on the power of this virtual community in "Over Our Heads" where she says;

"I cannot overstate the value of having a community of people who understand life under the dangling sword. Yet it’s hard to find companions on this journey. Typical support groups are not a match for me because I am unusually young to have this disease. Other women have different reasons for feeling alone."

One of these women whom I've been able to connect with is Sarah Horton, who writes a blog at Being Sarah .  Sarah has impressed me with the way she is able to articulate and channel her anger at having breast cancer, but also with the beautiful way in which she writes about life's simple pleasures, reminding us of the importance of finding a balance in coping with this hand that we have been dealt.

The other thing that struck me about Sarah, is that only three years after being diagnosed with breast cancer she achieved the tremendous feat of publishing her book, "Being Sarah", a narrative about enduring breast cancer, her anger at having developed it in the first place, her views on the politics of the breast cancer culture, balanced with how she has continued to live her life in the face of this adverse circumstance.

Recalling the ordeal of my first round of treatment back in 2004, after my initial diagnosis, all I can remember is how overwhelmed I felt; the constant struggle against the side-effects of chemotherapy, as well as the physical debilitation of all those surgeries and radiation.  But mostly, I just remember the constant mind-numbing fatigue, and the daily struggle of just getting out of bed and putting on my clothes to be ready to face a new day.  I barely knew my own name.

This begs the question as to how on earth does anybody endure breast cancer treatment AND write a book on top of it all? My mind boggles in thinking about this, which is why I was so interested to hear more about how Sarah was able to accomplish this incredible feat.

Please click here to read 'The Story of Being Sarah", published via my sister blog, Can-Do Women.

Moving Forward. Hopefully In A Red Karmann Ghia.

I don't like myself very much right now.  Now this is unusual, because normally I love my own company.  I laugh at my own jokes, I entertain myself in a hundred different ways, I wake up with a zing,  my mind brimming with new ideas and excitement for a new day.  It's never been a case of passing the time but more of a case of where did the time go today ?  But something's changed.  Even the dog, who's normally surgically attached to my feet, doesn't seem to want to be around me, and has taken himself into monastic seclusion under the bed, only coming out for meals and the odd game of "destroy-the-monster-toy".

Who can blame him really though ?  It's no fun when the center of your universe seems completely distracted and otherwise engaged in the deeply dull topic of cancer when all you really want to do is go for a run on the beach, chase some seagulls, and maybe if you're really lucky, roll in some disgustingly smelly unidentified-animal goop.  Now there's a perfect day,  for a belligerent furry little so-and-so who only stands ten inches high, but is pure heart and full of joyous zest for life.  I definitely need some of what he has.

Now before anyone jumps to the medicine cabinet to reach for an easy fix of little blue feel-good pills, I think the problem is this.  Lately, the whole cancer maelstrom feels like it has collided in some kind of perfect storm worthy of a Lifetime Movie script.  My darling husband and I never seem to get a break from having to think about the cancer thing.  In fact someone asked me last week, whether I ever get a moment of clear, pure, joyous, freedom of thought, and honestly right now the answer to that is no.  It just seems like there's always another scan around the corner with slightly worse news each time we go (which is every three months now), decisions to make regarding treatments, adapting to new treatments and their associated side-effects,  and all of the emotions and frustrations that go along with dealing with all of that.  Meanwhile, the people that surround us are just getting on with their lives.  For our peer group, that generally means having babies, planning for  a new home, celebrating children's milestones, advancing in or changing careers, and just getting on with life with all of its normal ups and downs.  Normal ups and downs.  What we wouldn't give to be able to get back to that.

So the question is now, how do we move forward from this latest setback, and keep moving forward ?  Because that's what life's about, isn't it ?  Moving forward.  A trick that we have used in the past and one that worked pretty well, is making sure we always have something to look forward to.  Even though there's no running away from reality to be sure,  having something fun to grab onto can help you get through those tough times.  Well that's my theory anyway.  So readers, here's what's on my list of things I want to have to look forward to.  Even if I can't make them happen at least it's nice to daydream.

Also, before anyone freaks out and thinks that I'm publishing a "Bucket List",  IT'S NOT A BUCKET LIST ! Just things that calm my mind and make me happy.  Okay ?  Moving right along.....

1.  A Tiny House In The Middle of Nowhere.

I am fascinated by thought of living in space smaller than my existing bedroom.  I'm also fascinated by the thought of being out in the middle of nowhere.  Okay, being near a little town would be good, but at least the perception of being in the middle of nowhere would be enough.  How fun to be able to just go and disappear for a few days and live off the grid.    Am I just looking for another reason to run away and not deal with reality ?  Absolutely, if only for a few days.

Not a doctor, medical file, or pink ribbon in sight.  Bliss!

2.  A Vintage Karmann Ghia.

Now I'm the last person to be interested in cars, but for some reason I'm completely obsessed with this car.  In fact someone quite regularly drives one up and down our street to visit one of the neighbors.  Obviously it's complete torture for me and just feeds my obsession.  Not sure where we would keep it but these are just minor details.

Isn't she a beauty ? I would name her Gwendoline.

3.  The Lava Rivers of Hawaii.

I want to stand at the edge of one of those lava rivers and bask in the awesome power and beauty of Mother Nature.  And stay at the Four Seasons Hotel in Maui.  Now this one we might be able to make happen if we start saving our pennies now.  Time to cut out all emotional spending immediately !

Amazing !  I have to go and see this for myself.

4.  A New Blog.
Yes !  I have an idea for a new blog.  Something to do with women's history, their place in society and how society has viewed them through the ages.  I'm not going to give up writing The Cancer Culture Chronicles, but I do want to expand my writing interests beyond the world of breast cancer, and what better way than to indulge my amateur sociological fascination with a novel, interesting and hopefully interactive blog dealing with this very topic.  I won't say any more than that until I'm ready to debut it, so please watch this space.

Yes I Can ! Watch This Space !

So now that I've shared my current list with you, I'm going to take a cue from the lovely and talented Nancy Stordahl who writes an excellent blog entitled Nancy's Point, and ask you a question.  I'd be thrilled to hear your answers.

What's on your list of things that you want to make happen or are looking forward to ?

The Gift of Breast Cancer? I'd Like A Refund.

"I would never wish cancer on anyone. But I wouldn't give back the experience either."

"You are forced to either look upon the experience as a curse, or a lesson in life/challenge to learn from and grow from. Ie., a "blessing"!"

These are real quotes sourced from comments posted to an article written by Eve Ensler (author of The Vagina Monologues) entitled, The Gift Of Cancer.  That's right. The. Gift. Of. Cancer.  Gift. Cancer.  Really ?  These are not words that I would ever wish to see in the same sentence. Ever. And yet, I seem to be surrounded by this kind of sentiment.

Are there people out there who actually see cancer as a gift ?  An experience they would never give back ? A blessing ? Are people now drinking the chemo ?

This week I had plenty of opportunity to ponder my own particular gift and associated blessings. As I was injected with another vile vial of radioactive goop by Nurse I-Couldn't-Hit-A-Vein-If-My-Life-Depended-On-It, so that my entire body could be scanned for more Breastmas-Tree-like lights whilst lying perfectly still in a dirt-nap state in a machine that is strangely reminiscent of lying in a coffin.  (Now, not personally knowing any vampires outside of Sookie and the gang from True Blood, I can't attest to the accuracy of this statement, but I think the only difference might be that the occupant of said machine has a pulse).  Anyway, before I launch into a dull tirade on the indignities of the whole PET/CT scan thing, let me get back to the point of this post.

From a sociocultural perspective, much of what I see and hear in the media regarding the breast cancer "experience" seems to carry with it an aura of calm, peaceful reflection and contemplation.  One could be forgiven for thinking that breast cancer is simply a journey on a well-trodden path that begins with a test of marathon endurance and ends with tangible feelings of achievement, clarity and purpose for the newly minted heroic Survivor.  In an almost graceful state of being, the triumphant Survivor peels back the veneer of her previous  existence to transform into a new and better person filled with wisdom and experiences, feeling eternally grateful and a saintly duty to repay the favors of her life and bestow the gifts of her cancer journey on the world around her.     Epiphanic sentiment abounds.   Transcendent survivorship seems to be the modus operandi in today's breast cancer culture.

And maybe this is exactly  how it is for many who have been through the breast cancer "experience", and I'm not saying that this is wrong.  Everybody has their own reality.  But it is the popular public notion of how a person dealing with breast cancer is imagined to be that I have a problem with. Because when you get to the point where breast cancer is  with you 24/7, with no end-game in sight as far as treatment is concerned,  and the relentless advancing of your disease no matter what you do, the concept of transcendent survivorship is a bitter pill to try and swallow.  In fact, I find it downright alienating.

Gayle Sulik in her recently published tome, Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health, expounds on these popular notions of Survivorship and indeed proposes the"feeling rules of breast cancer survivorship" as an overarching social framework within the context of breast cancer culture.  Ms Sulik writes:

"Feeling Rule 1:  Survivorship requires a strong sense of optimism in terms of hope, faith, and transcendence.

Feeling Rule 2: Survivorship necessitates selfishness, which is constructed in masculine terms as a rational coping strategy or as a confession of gender violations related to women's nurturance and selflessness.

Feeling Rule 3: Guilt results from the stigma associated with failing to present oneself adequately as a she-roic survivor, losing bodily integrity, or disrupting gender roles."

.......The feeling rules of breast cancer survivorship empower and constrain throughout the breast cancer experience, and within women's particular circumstances..........the rules contribute to a "balancing act" as women try to carve out their own mode of survivorship and establish equilibrium between their needs and the needs of others."

Exactly right.  No wonder I feel the way I do.  Honestly,  having cancer has left me with nothing but a gnawing sense of what might have been and what definitely won't be.  It has forced me to confront a whole bunch of crap that, quite frankly, I could have done without.  My life was just fine before cancer rudely barged in and now that I'm just living with it and trying to accept that this is just the way it's going to be,  I certainly don't feel like I'm transcending and morphing into a higher being.  I'm just getting on with it the best way I know how.

The Gift of Breast Cancer.

It doesn't fit. Can I return it ?

For me at least,  terming any part of the cancer experience as a gift or a blessing just seems plain wrong.  Okay I probably do have a greater appreciation for life's simple pleasures and I'm certainly a more compassionate and thinking human being, but I don't see any of this as a gift or a blessing.  A gift is something that makes you feel a bit special and comes without any strings attached.  Cancer takes away so much more than can ever be imagined, and to try and portray this otherwise by putting a positive spin on any part of the experience is what, I believe, is being perpetuated by the pinking of the breast cancer realm.   Isn't what we go through invalidated by using the words like "gift" and "blessing" in the same sentence as cancer? Describing any part of the experience of cancer with terms such as these, boxes up the truth with a pretty pink ribbon to be neatly filed away under "Positive Life-Affirming Experiences" or something similar.  I don't care if the experience of breast cancer causes you to morph into the next Mother Theresa, the fact remains that nothing, nada, zilch can ever be enough to compensate for what is lost to breast cancer. It's an evil curse and I don't intend to ever see it any other way.

Is it shocking to you in reading this that I sound so angry and bitter ?  Yes ?  Why ?  Because this is the myth of populist "survivorship".  It is not everybody's reality.  Doesn't anger just make me human?     So what does all this mean ?  I don't know, but I'm sure as hell not going to give up being angry that this happened to me, and I'm sure as hell not going to give up writing about it.  In fact I would say that feeling angry is a good thing.  At least for me.  It feeds the fire.   My people will just have to deal with it.

After all, I am.