Breast Cancer and Middle School

My original intended purpose for this blog was to be an observer  and commentator on all things (breast) cancer culture, in a way to try and make sense of my own experience at the same time.  It still doesn't make sense by the way.  Today's post is going back to this blog's roots and asking some tough questions, so I'd ask that you suspend your emotions and read the entire post before commenting.  And please do comment, because I'm very interested to hear your thoughts, whether you agree or disagree.

This article appeared in the December issue of one of our local magazines, The Journal. It's about a local middle school's efforts to raise funds for a local breast cancer organization, Breast Intentions, that provides financial assistance to women in need who are going through breast cancer.  In fact, the charity they support was founded four years ago by two local fifteen year old high school students, an admirable accomplishment indeed as well as a worthy cause.  It seems clear that the purpose of this story was to congratulate these middle-schoolers on their fundraising accomplishments, as well as supporting the good work of the beneficiary charity.

And for most readers, the feel good story would stop there.  Well done kids!

But, of course, I see things a little differently.

Middle-school involvement in the pink breast cancer movement, be it fundraising events like this, education programs within the schools, pink ribbon decorations, flags and signs, or indeed civil liberty legal actions to preserve students' First Amendment rights to wear "I (heart) Boobies" bracelets, certainly seems to be increasing, as does the associated media coverage. Rather than making me feel good, it's making me a little queasy and rather uneasy.

Firstly, I'm uncomfortable that breast cancer, the disease, has been elevated by slick marketing to a status that screams to the general public that it is far more important than other major killers of women, like heart disease or lung and other cancers.  (See http://www.cdc.gov/nchs/fastats/lcod.htm)

And in reading this article I couldn't help thinking about all the kids, who took part in the pink parade in their tie dyed pink shirts, and whose parent or other significant person, was at home suffering from some other kind of cancer or catastrophic illness.  How did these kids feel about all the attention (and money) being paid to breast cancer?  Did they have a voice?   Were they able to express their feelings of discontent and frustration?  Did they even think about it?  I really wonder.  Do the schools have fundraising events and parades of this scale for other Health Observances? What kind of message are we really sending to these middle schoolers?  That breast cancer is the only disease that matters?

In my limited research of this topic, I came across several charitable organizations that offer education programs for adoption by both middle and high schools.  Here's an example of one program offered to Wisconsin schools by an organization called the Breast Cancer Family Foundation.

This particular organization educates young people on the premise of "proven risk-reduction strategies" that apparently may prevent many types of cancer, "not only breast cancer".  The program, specifically aimed at breast and testicular cancers, focuses on "self-examination, diet and lifestyle".  

Whilst I can certainly see merit in encouraging kids to maintain a healthy lifestyle for all manner of reasons and to be aware of their own bodies, but to suggest that these are proven ways to prevent breast cancer is just not evidence-based.  The point being that we still don't really know exactly what causes breast or other cancers.

I'd make the same point about self-examination and early detection.  These are methods of cancer diagnosis.  They don't prevent or cure cancer or categorically save lives.   So why are we pushing breast cancer education curriculums that have little scientific basis to school kids?  Where's the value in that, other than perpetuating the cycle of misinformation all in the name of pink breast cancer awareness?

For the horsey girl in your life

If this is indeed happening on a wide scale in schools, then I hold grave fears for the future generation of breast cancer activists.  Indoctrination to the pink party line is starting earlier and earlier.  What's next?  Breast cancer programs for kindergartners?  Don't laugh, I don't think it's beyond the realm of possibility at this point, and we already have the toys!


On another note, in the U.S. there's an ever present debate about the extent to which there should be a mingling of church and state, particularly within the public school system.  Readers,  I put it to you that now we have the mingling of breast and state within schools, for better or worse.  Whilst I applaud any school's efforts to encourage altruism within their student body, and I fully support including cancer as a topic within any health education curriculum, I'm uncomfortable with schools' elevating breast cancer to this pink extent.  As Ronnie Hughes of the Being Sarah blog, so eloquently put it;

"Pink's not wrong. It's just not right enough."

And that's the problem.

*****************

So what do we want middle school kids to know about breast cancer, or cancer in general?  What do they need to know?


Is it right to popularize breast cancer over other cancers and diseases within the public school system with events like the one in the article?


Is this even an issue?


Please comment, I'd love to hear your thoughts.

Breast Cancer Awareness Jersey Shore Style!

As you're all too well aware the last month or so for me has been particularly difficult in dealing with my illness.  Living in the suburbs of New Jersey,  life can feel a little bit lonely sometimes, and I'm so thankful for all the support I receive from my cyber-community, as well as the unending support from family who continue to just be there for me in more ways than I can count.

But from a societal standpoint, and as someone living with the never-ending challenges of a metastatic cancer diagnosis, I often wonder why it is that I continue to just feel this unnerving sense of isolation and increasing dread that there is very little understanding by the ordinary person of the realities of what a breast cancer diagnosis really means.

I guess this item, received in my mailbox this week, brought it all home, and eureka I got it!

This is how "In Jersey / Jersey Shore Magazine" depicts what they think is important for the women of the Jersey Shore area to know about breast cancer.

First the cover of their "Special Breast Cancer Awareness Issue".

Second, the contents.

On page 32 we learn about Pat Battle surviving (past tense) her "battle" (nice use of double entendre) with breast cancer.  Another celebrity breast cancer story.  Funny how they all seem to be good news stories;  about how their mammograms saved their lives, and how they've all gone on to embrace the mantle of triumphant survivor after so-called successful treatment.  And that's the end of the story, as is always the way.  I guess no one wants to read a bad news story, say about a metastatic breast cancer diagnosis?  Might not be needing the pink pashmina for that photo shoot.  Or hair. Or breasts. Or ovaries.  Or other body parts or organs or other semblances of normal life you might be fond of.

On page 42 we get what is essentially an advertorial for Dr Deutch's marvellously innovative and oh-so-cosy breast imaging center called HerSpace. Poignantly, we're informed that Dr Deutch also recently went through her own breast cancer crisis, but details are scant at the behest of the good doctor, as she wants to focus on her patients.  Patient focus is a good thing especially when "Deutch does describe her practice as a "niche" practice because it operates on a fee-for-service basis, meaning it doesn't accept Medicare or private insurance plans."   That "story" got 5 pages out of a 63-page issue.

On page 52 we're treated to a Tickled Pink fashion spread of glossy made-up survivors in their breast cancer charity of choice t-shirts and then bedazzled in all manner of pink ribbon accessories and jewellery all available for purchase at listed stockists. As for the copy; here's my personal favorite..."showcased here in an array of pink items, they show a verve and vitality that is the essence of the spirit of all survivors...." Nothing says verve and vitality like a $139.95 Sparkle Strong Breast Cancer Survivor Necklace I guess!

And last but not least, "Amazing Beauty Tips for Chemo Girls", where two local women have co-authored a book (available for purchase from Amazon and the like) chock full of beauty pearls of wisdom for all us "chemo girls".  Shame on me. I hadn't really thought about pencilling my eyebrows in today.  But I do hope they have a tip for dealing with the thrush that has taken up residence in my mouth this week.  How can you get that just squeaky clean feeling when your mouth is coated in white crap, and ulcerated from the side of your mouth to halfway down your throat? Will I still be able to wear lipstick?

The point about this snarky post is important.  This is what we; women; are being fed on an almost daily basis with respect to breast cancer awareness, and examples like this magazine, contain absolutely not one iota of useful, educational, scientific, newsworthy, actionable, impartable or realistic information about breast cancer, period. But there were plenty of coupons for pink products and lists of stockists.  And this magazine goes out to every household in my county and surrounding areas!  How have we let "breast cancer awareness" come to this? No wonder we're not getting anywhere in the fight to eradicate this disease.

Meanwhile this week, as well as railing against this magazine, I've been dealing with the gift of steroid-induced myopathy and a nasty case of thrush in my mouth also as a result of the steroids that I had to take for radiation.  So now as well as occupational therapy for my hand, I must also start a course of intensive physical therapy to regain the strength back in my lower body and leg muscles which have withered away to practically nothing.

And I haven't even started my new chemotherapy yet.  I'm saving that fun for next week. What will I wear?

Perhaps all I need is a full face of makeup, and all of this can just go away with a poof of a pink pashmina and a sparkly pink ribbon trinket.  Battle won.  We're all aware.  We're all survivors.  Fist pump!

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.

My View of Breast Cancer According to Brinker

Whenever I set about writing a blog post, I have in mind that I will try to be as objective as possible, particularly if I am discussing a subject that I know to be contentious.  The trouble is, it's getting harder and harder for me to  be fully objective when I am discussing issues related to breast cancer fundraising and research.  After all, as a person living with Stage IV breast cancer,  research is tantamount to my hopes for recovery and a long life.

Today's post is a prime example.  Recently a reader sent me a link to a televised interview between Tavis Smiley of PBS and  Nancy Brinker, the CEO and founder of Susan G. Komen for the Cure®.  The interview aired on October 1, 2010 to mark the start of Breast Cancer Awareness month, and to promote the launch of Brinker's book,  Promise Me: How a Sister's Love Launched the Global Movement to End Breast Cancer.

Click here for a link to the interview and a full transcript.

I started watching the full 13-minute interview with an open mind.  But as I continued to watch the interplay between Brinker and Smiley it dawned on me that my goal of remaining objective was going to be an impossible task.   I run my fingers through my newly short hairdo and am reminded that soon there will be no hair  to run my fingers through. As I write down notes during the interview,  I realize how difficult it is becoming for me to write with a pen.  Tumors are now pressing on vital nerves,  and my writing arm is rapidly losing strength, and certain fingers are numb.  Writing by hand has become a laborious task with the end result looking like something akin to chicken scratchings.  In addition, I'm so tired from my new chemotherapy regimen that concentrating for any length of time seems a monumental feat.  Finding the energy to blog is getting harder.  I'm sure chemo-brain is becoming a factor as well as I struggle to  find and, indeed, spell common words as I construct my sentences.  Yes, objectivity was being replaced with the difficult realities of metastatic breast cancer and treatment.

But I persevered with the interview, waiting for Nancy Brinker to say something that might give me hope.  I watched with anticipation even thinking that her words might convince me that Komen's activities are beyond reproach.  Have I been wrong in questioning the activities of the Komen organization?   Then I had one of those "ah-ha" moments that Oprah always talks about.  I was watching and listening to this interview with the eyes and ears of a woman living with metastatic breast cancer.  I was already angry when I started watching the interview.  I wanted to know: Where is my cure? When is my cure?  I'm sick, and I don't have time to waste.  Where is all that money going?  I watched, I listened and I waited.  Would my anger transform when I got the answers I needed?

Unfortunately, this is what I heard. That the public can't handle the unattractive truth about breast cancer.  That the only way to raise money for the cause is through feel-good experiences and products.  That people shouldn't think about dying from this disease.  That 5-year survival rates for early breast cancer are the only statistics that matter.  That metastatic breast cancer is still unmentionable and a lost cause financially.  That more of Komen's money is going to research than is actually the case.

And so it went, and with each passing minute the angrier I became.  There were many points that I wanted to take issue with to present a fair and balanced discussion.  As the interviewer and in the interests of responsible journalism, Smiley should have dug deeper.  He didn't, and instead this interview sounded to me like a paid advertorial for the Komen organization.

Here are my thoughts.

JOYFUL CONSUMPTION

(Minute 1.34) Nancy Brinker ("NB"):  "....[I] realized the only way to deliver really conventional messages about breast cancer was through products and things people were doing that they weren't afraid of and enjoying what they were doing."

What does she mean that products are the only way to deliver messages about breast cancer? Is the only way for the public to become informed about a disease through sound bytes and logos? What about curriculum, education, information, scientific evidence? Does NB really think that products contained in my Pink Boob Awards Gallery give anyone useful information about breast cancer? Does the Hope Gun and other products featured in my Selling Hope post do the job of connecting the public with the realities of breast cancer?  What do any of these products have to do with "conventional messages about breast cancer?"

I think what NB really meant to say was that products are the only way to attract corporate sponsors interested in cheap advertising, and a way to tap into the emotional psyche' of a consumer population that wants to "do good".  Komen's approach is the perfect marriage of altruistic appearances and a corporation's inherent motivation to sell products that generate  profits and banner-worthy public relations opportunities.

My disease has become a marketable commodity and nothing more.   The sad irony in all of this is that I believe Komen's approach to cause-marketing has only served to undermine the seriousness of this disease in the public's perception.  With products like those depicted in my gallery, pink guns and ridiculous novelty items, breast cancer the disease is becoming a laughing-stock.  The public is being conned out of their hard-earned money with no end to the consumrist circus in sight.   Meanwhile I sit here with my hopes for recovery; no better than they were when Susan G. Komen herself was fighting the disease all those years ago.

SMILE, CELEBRATE, PRETEND.....



(Minute 2.06) NB: "Also, the Race for the Cure and the other events that we have because our job is to celebrate hope and to give people a vision for the future, not to depress them all the time and say, you know, you're gonna die from this."


This one really gets me.  Celebrate hope? What hope is she talking about?  The hope that CJ" (Dian) Corneliussen-James, president of METAvivor Research and Support, Inc, wrote about in her guest post on this blog entitled "Trying to Stay Alive on Two Percent"? Less than 2% of all cancer fundraising is allocated to metastatic cancer research, of which breast cancer is a subset.  There is nothing in that statistic that gives me a reason to celebrate hope or gives me a vision for the future. In fact, this data tells me that I have every reason to be pessimistic, not optimistic.  What "vision" is there for people with Stage IV when their prognoses are grim, their treatments are grueling, debilitating and generally temporary in success.  Yet their self-proclaimed leader of advocacy implies a "don't worry, be happy" attitude.    Easy for you to say NB with your "celebrations of hope" and "visions for the future."

How nice that NB wants to protect us all  by not talking about the depressing, yes depressing, fact that 40,000 women each year in the U.S. and hundreds of men are still dying from this disease.  Depressing? You bet.  Truth? Absolute.  Read the National Breast Cancer's Coalition 2020 White Paper for more sobering realities on how little progress we have made in the fight to end this disease.  

Nothing to celebrate there either.  Perhaps it's time for Komen to recalibrate the message?



FROM ABSENT TO ATTRACTIVE


(Minute 4.20) In discussing why breast cancer wasn't talked about in the past...

NB: Because it wasn't considered attractive or it wasn't considered the thing to do, to talk about cancer out loud.


I find NB's use of the word "attractive" in this sentence to be an interesting choice.  Does she imply that through the work of her organization, breast cancer is now considered "attractive".  Certainly, this is precisely the issue raised in a recent essay by a writer's collective that I featured on this blog,  entitled Miss Pink Elegance.  Yes, we speak about breast cancer now, but the culture seems to be largely constructed around pink ribbons and images of pink pleasantry and beauty.  Ironically,  predominant breast cancer culture is still not really about the disease itself.

When was the last time you saw an image like this at right? Almost never, except perhaps in your surgeon's office?  This is the ugly truth.

There is still nothing attractive about breast cancer.

Unless you subscribe to Komen's vision for breast cancer which is illustrated by a recent race advertisement on the left.    This is the image of breast cancer that the public is being sold.

Thanks to Komen, breast cancer (the cause) is now attractive. This is supposed to quell my anger? Hiding the truth and prettying it up with makeup, smiles and fashion? No.  I'm no less angry.







MISDIRECTING THE PUBLIC


(Minute 4.33) NB: "You know, the five-year survival rate for very early breast cancer in those days was 74 percent. Today, if everything's done right, it's almost 98 percent."


(Minute 10.30) "..[w]e can conquer early breast cancer"


I've heard this 98 percent statistic quoted many times.  The problem with this statistic is that it's often quoted out of context and overused.  Look at survival rates.  For which group does the 98 percent survival rate apply? Not Stage IV.  Not Stage III.  Not even Stage II.  Check out the American Cancer Society's statistics.  Increase stage:  Decrease survival.  By focusing on a five-year statistic that only applies to a small subset of the diagnosed, NB  contributes to the misconception that breast cancer is a completely survivable disease.

This disservice to the diagnosed doesn't address existing controversy about diagnosing and treating pre-cancerous (Stage 0) conditions; conditions  that may never evolve into anything life-threatening.  Are these types of conditions included in this statistic thus skewing the survival rates?  At the same time the 98% statistic  and the statement that "we can conquer early breast cancer" doesn't speak to the fact that treating an early stage breast cancer is no guarantee that metastasis won't ever occur.  They do.  And sometimes they do many years after an original diagnosis.

NB does not quote survival rates for advanced stage and metastatic disease.  Why?  Because the picture isn't as rosy or "attractive".




THE ECONOMICS OF LATE-STAGE CANCER


(Minute 6.56) Discussing the increasing incidence of cancer.....

NB:  "There's one thing we know. We can't afford - and no one in the world can afford - to treat all the late-stage cancer."

This is the closest NB gets to talking about metastatic breast cancer.  In fact the word "metastatic" is never used in the entire interview.  It is simply alluded to as "advanced" or "late stage".  Does this statement imply that the issue of metastatic breast cancer is not one that Komen wants to address?

I certainly hope not.  Komen has recently appointed Danny Welch PhD, an expert in metastatic cancer,  to their Scientific Advisory Council.  Let's hope that in light of the above statement by NB, that his appointment is not simply a token gesture and  that Komen can afford to fund meaningful and productive research in this area.

Since Komen spent 41% of its 2009 budget on education and only 21% on research, it's no wonder NB doesn't think anyone in the world can afford to treat it.

But lives depend on it, mine included.



WHERE THE MONEY GOES

(Minute 11.19) NB: Well, we have affiliates in 120 cities throughout America and their single task is to make sure they do needs assessment in their community. They fund treatment, screening and education programs in their communities basically focused at low-resource people. With the 25 percent that returns to the national foundation, that's where we fund the cutting edge research.


So if you look at our resources as a pie, basically a little less than half of our money goes to cutting edge research, prevention, causation, etc. The rest of it goes for community outreaching care across all cultures. 


Anger rises.  I actually did look at Komen's "resources as a pie" and I analyzed how Komen spends its valued resources. (Refer to my three-part "Komen by the Numbers" series of blog posts for more in-depth discussion on Komen's financials).

First of all,  Komen spends a LOT less than half  of its revenues to fund research.  In 2009 the "pie" looked like this.  21% of Net Public Support and Other Revenue went to fund research.  That's not even close to the "little less than half" that NB quotes above.

How can an organization that spends less than a quarter of its financial resources on Research be "for the Cure"?  It's a question that I continue to ask.

CURES OUTSIDE THE LABORATORY?

(Minute 11.40) NB:  "No other breast cancer organization has this broad of mission because we don't believe you can cure a disease in the laboratory alone."


I don't understand this statement at all.  If you can't cure a disease in the laboratory, then how can you cure it?  Haven't all the major medical cures come out of a laboratory?  Does NB know something that the rest of us don't? Based on Komen's resource allocations, it seems that she believes that screening, treatment, and education can result in cures!  Is this Komen's justification for not making research a priority in its funding allocations?  Well, yes, that's exactly right.  See my post, "Komen By the Numbers" for a discussion on how Komen apparently defines the word "cure".

I've said this before and I'll say it again; screening, treatment and education will never result in a cure for my cancer, or any other late stage cancer.  Game-changing research, the kind that is generally done in a laboratory,  is the only hope that I have that my cancer will be cured.

But if I'm wrong on this, and there's a way to cure my cancer outside of a laboratory,  please Komen, I beg of you to let me know soon.

In the meantime I'm still angry, and for good reasons.

Pink Town

A recent article in the local newspaper caught my eye; "Fair Haven to Become 'Pink Haven' in April."  This year three of my neighboring towns will be taking part in a campaign known as "Paint The Town Pink". Red Bank, Monmouth Beach and Fairhaven, will all magically morph into Pink Bank, Pink Beach and Pink Haven.  All in aid of, you got it....not research...but breast cancer awareness, prevention and promotion of annual mammography for women.

Most of my regular readers will understand when I say that my first reaction to this news was to  emigrate.  Somewhere far away.  Like Mongolia.  Or Siberia.  Even Antarctica seems like an attractive option.  But would these places be far enough?  Perhaps I can find a spot on an upcoming space mission.

The pink festival will run from April 30 through May 7.  In addition to certain town roads having a pink stripe painted down the middle of them, options for community involvement include:

"...placing a pink piggy bank in a business for donations, window painting contests, pledge contests, or hosting an in-store event during the week.

Residents could also participate through a "Pink Your House" contest where residents would be provided a "Pink Starter Kit" containing lawn signs, flags, and other decorations."

Yes !  Pink your town! Pink your roads! Pink your business! Pink your house!  Show your community that you don't give a crap about other cancers, or other incurable diseases, or anyone else for that matter who might not feel comfortable with all this pinkification.

Then I thought, perhaps it's time I stopped being a snarky cynic.  Maybe it's time to get on board with the breast cancer celebrations and really throw myself into supporting the towns' efforts in raising funds for more breast cancer awareness.  Okay,  so awareness won't ever result in a cure but let's not worry about such trifling matters for now.

So I've come up with an idea.  I'm going to pitch a piece of performance art to each of the towns mayors which will speak to breast cancer awareness.  I hope that they will love it and will allow me to perform it during Breast Cancer Party Week.

Here's what I have in mind.

Sort of like this but with a
cancerous tumor

First I will take a piece of couch foam and a can of spray paint and fashion a large cancerous breast costume for myself.  For some added glamor I will drape myself in a Miss Pink Elegance sash and bedeck my soon-to-be-bald head with a pink rhinestone crown.

Then I will take my breast costumed self to the main street of Pink Haven and I will lie down in the middle of the pink striped road.  It is then that I will give a secret signal to my support team, and I will pretend to be run over by either this cement mixer or this tractor.  Probably the cement mixer for maximum effect.





It is at that point that my support team will summons the police.   The police will take one look at me and immediately call an ambulance.

From there I will be carted off to the Pink Bank hospital.  I will be greeted in the emergency room by the medical staff who, for added enjoyment in the performance art piece, will engage in the "pink glove dance".

Then whilst I am being fake-treated at the hospital we will stage a fire drill.  Someone will summons the local fire department.  All of this staged drama will be caught on camera by the local television station.

Emerging from the hospital in my crumpled foam cancerous breast costume, I will be greeted by the local press corps.  I will proudly and symbolically declare that the town of Pink Bank has successfully crushed breast cancer and I am now a victorious survivor.  Performance art piece complete.

In the evening, I imagine the breast cancer party will continue.  All the town residents will gather in the town square.  There'll be pink confetti.  Pink ticker tape.  Pink balloons.  Pink t-shirts. And pink feather boas for all.

And with any luck Susan G Komen for the Cure ® will also show up in Pink Bank,  just like they did for the 2009 Paint Your Town Pink event in Charlotte, North Carolina.  As the local newspaper proudly declared;

DRINK PINK

Paint the Town Pink bar crawl for Susan G. Komen

Pony up $5 at a participating bar this Friday (full list of locations at www.komencharlotte.org) and you'll get a special pink cup that you can carry with you all night long to 12 different bars - present it and you'll get a deal on drinks and the proceeds from the cups will go to the Susan G. Komen...

This is genius. Pink Bank is known for its bar scene and what better way to raise awareness for breast cancer and money for the cause by engaging in some altruistic binge drinking.

Now I know the American Cancer Society wants to get all serious and rain on our pink parade by putting out blurb like this:

"The use of alcohol is clearly linked to an increased risk of developing breast cancer. The risk increases with the amount of alcohol consumed. Compared with non-drinkers, women who consume 1 alcoholic drink a day have a very small increase in risk. Those who have 2 to 5 drinks daily have about 1½ times the risk of women who drink no alcohol. Excessive alcohol use is also known to increase the risk of developing cancers of the mouth, throat, esophagus, and liver. The American Cancer Society recommends that women limit their consumption of alcohol to no more than one drink a day."

And even Susan G Komen for the Cure®'s website which has a whole section on "Drinking Alcohol" ,  gets in on the depressing act and declares ..."Alcohol may increase breast cancer risk in several ways."

To the pink party-poopers of this world, statements like these might imply that perhaps one should exercise caution in engaging in excessive partying with alcohol.  Even if it is "for the Cure".  But who cares?  It's all just a bit of fun, and it's for a good cause, right?

Anyway once the celebrations are over, and all those pink ribbons, balloons and pink boas have been discarded and the townsfolk have headed home with bleary pink eyes, and a blood alcohol limit that may increase their  risk for breast cancer, the towns' sanitation crews will move in for the cleanup.

I will go home, satisfied and happy with the knowledge that today I helped raise awareness for breast cancer.  The next morning I will sadly discard my cancerous breast costume and take down all that pink bunting and pink ribbons bedazzling my house.  All that is left is for me to do is take out the garbage.

The breast cancer party is over.  At least until October rolls around.

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.

***************************

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?

*************************

Selling Hope

There's been a lot of talk recently in the breast cancer blogosphere about language and how it's used in the breast cancer culture.  Uneasy Pink's post on "Word Matters", Being Sarah with her post, "What's the Word?", and The Accidental Amazon's post, "A Lump By Any Other Name" provided excellent commentary on the issue, and generated much discussion amongst readers.

Well, I'd like to throw one more word out there as the subject of today's post.

Yes it's a tattoo

Hope: 

1. to desire with expectation of obtainment
2. to expect with confidence

In the cancer culture, "hope" is a word that carries a lot of power and emotion when uttered in the context of cancer patients and their desire to be healed from their disease by the miracle cure that everyone wants to believe will be forthcoming within their lifetime. 

And in the breast cancer culture particularly, "hope" is a concept that holds plenty of marketing cache' for the savvy corporations looking to make a buck off society's hope for a world free of breast cancer.

You can purchase a "Facets of Hope Breast Cancer Awareness Bracelet" for the bargain price of $99 where;

"Companionship, courage and love today; hope for a cure tomorrow. That's the heartfelt message that this Facets of Hope crystal bracelet expresses to everyone, whenever you wear it to show your compassion and support for those who face the challenges of breast cancer."

Except just be sure to read the attached warning label which, although legally only required by the State of California, should probably be read by anyone  considering buying this bracelet.

"California Proposition 65 WARNING for lead crystal: To enhance optical clarity, the crystal in this product contains lead, a chemical substance known to the State of California to cause cancer and birth defects or other reproductive harm."   

 My hope is that nobody buys this ridiculous piece of pink-ribbon schlock, since it's production might actually contribute to increasing cancer incidence, and purchasing it doesn't really feed my hopes that we'll have a "cure tomorrow".

In the U.S., Susan G. Komen for the Cure®, the nation's largest breast cancer fundraiser, has a commercially vested interest in this concept of "hope", as do their corporate partners, evidenced by the following examples of campaigns undertaken in recent years.  We've seen Komen trademark the phrase "For The Cure" and enforce it's legal rights over anyone else deigning to use such phrasing in their fundraising efforts.  I wonder if we're going to see a similar scenario unfold for the word "hope" when used in the context of breast cancer?

DOVE® Chocolate: Promises of Hope: 

Susan G. Komen for the Cure is proud to be the beneficiary of DOVE® Chocolate Promises of Hope™.  DOVE® Chocolate Promises of Hope™ feature messages of hope and inspirations written by breast cancer survivors. These messages capture the strength, compassion and voice of women who have overcome the battle of their lives.

 MMG Corporation

Susan G. Komen for the Cure® is proud to partner with MMG Corporation for their “Knots for Hope” campaign to support the vision of a world without breast cancer. The Knots for Hope collection of 100 percent silk ties featuring the Susan G. Komen for the Cure signature running ribbon logo will be available at www.Macys.com,  Belk Stores, Boscov's, Lord & Taylor, Macy's, Nexcom, Peebles, Stein Mart, Veteran's Canteen, and select TJ Maxx and Marshall’s stores nationwide. 

 Smiles of Hope ® toothbrush

Susan G. Komen for the Cure is pleased to partner with Cause Care, LLC in the breast cancer movement.  From August 15, 2008 through August 15, 2010, Cause Care will sell a specially designed Smiles of Hope ® toothbrush through various retailers nationwide to benefit Komen for the Cure. 

 Susan G. Komen for the Cure®, Seattle branch, is also the recipient of a portion of proceeds from sales of the Walther P-22 Hope Edition gun from Discount Gun Sales LLC in recognition of Breast Cancer Awareness Month. Yes that's right, a "Hope" gun.

Does this gun accurately represent 
your hopes for a world free of breast cancer? 
It just makes me hope for better gun control laws in this country.

The Hope Bear

And the slick marketing campaigns go on ad nauseum with many, many examples to be found, where "hope" is the primary focus of campaigns designed to tug on the heartstrings of ordinary citizens to buy products that support the desires of breast cancer patients everywhere to receive the miracle of a cure.  The message is simple.  If you buy this product, then you invest in "hope", and what better way to show you care about breast cancer?  This is all very nice, but does the average person really know where their dollars are going when they cuddle that Hope bear, drink that Hope wine, or shoot that Hope gun?  They hope that their dollars are going to the right place, but is that enough?

"Hope" as a marketing strategy is not limited to corporate America alone.

The Cancer Treatment Centers of America, a network of cancer hospitals, actually have a website devoted entirely to this concept of "hope" called "The Journey of Hope", an online resource for cancer patients and their families seeking spiritual support.  Indeed, you can even train to be a "Hope Navigator"  so that.... "As you minister to cancer patients and their families, you help them find hope for their journey … hope spiritually, mentally, emotionally and physically. Hope for a successful battle against cancer."

The American Cancer Society offers their Hope Lodge service which provides free accommodation to cancer patients and their families and "is a place created to ease the burden of cancer treatment - a place where we give hope a home."  In addition, they have a charity campaign called "Give Hope" where "we all have reason to hope for a world with less cancer and more birthdays".

But what does "hope" really look like for someone dealing with a cancer diagnosis? Hope that the cancer is not too advanced and responds to treatment? Hope that the cancer doesn't come back?  Hope that we get to live out our dreams? Hope for a miracle cure? Hope that future generations won't have to worry about developing cancer? Hope that we won't die a painful and premature death?

Hope, it seems, is everywhere, especially in the breast cancer culture.  But is it really? Or do we just hide behind a mountain of pink-ribbon laden merchandise oozing syrupy hopeful messages, trusting that our purchases and donations will make all the difference and that corporate and benevolent America will deliver on the hopes of every breast cancer patient? Or are we being sold on false hope?  Perhaps,  the reality is that we are just hoping against hope, a state in which we hope without any basis for expecting fulfillment, because if we don't have hope then what else is there?

There are so many dynamics to "hope"in the context of cancer and yet what evidence do we really have to think that "hope" alone will save us?  It won't.  It's not enough to simply hope.  What we must to do is keep critically questioning.  Why does the incidence of cancer keep rising unchecked? Why have cancer mortality rates remain largely unchanged for decades? Where is the cancer research focus? Where are all those cancer fundraising dollars really going? Are we simply pouring money into more cancer awareness and education campaigns at the expense of funding potentially game-changing cancer research?   When will the government make cancer research funding a top priority? When will governments realize, that in setting law and policy, they can address key issues that will result in cancer prevention? What else can we be doing to aid the fight?

And what about my hope? As someone living with metastatic breast cancer, the statistics of my disease are frightening and offer very little in terms of "hope";

(Statistical information sourced from MetaVivor and Metastatic Breast Cancer Network).

• It's estimated there are currently 162,000 women in the U.S. living with metastatic breast cancer 
• 90% of cancer deaths result from stage IV cancer, but only 2% of research funds are devoted to stage IV cancer research.
• In developed countries, nearly 30% of women with early stage breast will go on to develop metastatic breast cancer
• Only 27% of patients whose breast cancer has spread to other organs survive five years
• Median survival after diagnosis is three years with no statistically significant improvement in the past twenty years
• The number of Americans who lose their lives to metastatic breast cancer is about 40,000 per year, a number that has changed little in decades.
• Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to stage IV. 
• Breast cancer is the most common kind of cancer in women, and the leading cause of cancer death for women worldwide, with nearly half a million deaths every year.

So where do my hopes lie?

• I hope that I can continue to defy the grim statistics that come with my disease.
• I hope that, sooner rather than later, metastatic cancer will be given the research priority and funding that it needs, so that we too stand a chance to live long and productive lives.
• I hope that we will move away from cause-based product marketing and consumerism that has become so ingrained in our collective psyche', so that we can be sure that every dollar we invest in "hope" for a cancer-free world is directed to meaningful and potentially life-saving research.
• I hope that I can expect positive change in the way we confront cancer to happen within my lifetime.  
• I hope that I can still have real hope.

Pink Boob Awards Gallery Relaunch

Given that the end of the year is fast approaching I thought it a good time to review my blog posts of the past year.  After reviewing my little "Stats" tool, to which I'm completely and unhealthily addicted, it seems that some of my more popular posts were those where I displayed and discussed the more heinous and/or tacky examples of pink ribbon and breast cancer awareness products that are so ubiquitous now, particularly in the U.S.

Her Name?
"A Vision of Hope". BARF!

My love affair with writing these kinds of posts probably stems from Christmas a couple of years ago, when I received as a gift from a well-meaning relative, this vomitous little "breast cancer awareness" figurine at left.  Talk about traumatic! If you're interested, you can read my my full reaction to this gift in the post entitled "The Adventures of Pink Lady: Part I".  It represents my first foray into this kind of a rant, and also explains why I think these kinds of products are simply a marketing scam foisted upon the unsuspecting good spirit of humanity, all in the name of corporate profits dressed up as breast cancer altruism.

I remember at the time, after opening the box, not knowing whether to laugh or cry.  Firstly,  the figurine was marked as being the first in a series, which possibly meant I was going to receive the rest of the series at some point. Arrrgggh!  And secondly,  I couldn't believe that someone actually thought that buying this gift for me was a good idea.   Thirdly, what I was going to say to the well-meaning relative?  I mean what do you say?  Thanks? And thanks for reminding me that I have breast cancer?  And by the way, this doesn't make me feel better?   (I think I completely chickened out of this potentially teachable moment and just muttered thanks, biting down on my tongue. Very hard!).

However, I knew instantly that I needed to keep this gift because it reminds me of all that is wrong with pink ribbon culture, and inspires me everyday to keep writing this blog.  So I put her in my dining room cabinet where she has become quite the dinner party conversation piece and the best excuse I can think of to get on my soapbox to rant about awful pink ribbon products.  I also keep her there in case the well-meaning relative ever visits my house.  Gulp !

Many months later, still feeling completely enraged by the plethora of pink ribbon tat that assaulted my senses everywhere I looked,  I halfheartedly launched something called "The Pink Boob Awards".  Readers sent me their examples, and I posted them to a not-very-exciting list on my blog.  And there the list sat, periodically updated, whenever I found another particularly foul example.  It became clear to me that it was going to be hard to pick a winner, because there were just so many to choose from.  So I just didn't.

Cleaning products and breast cancer.  Hmmmm.

Anyway fast forward to today, with more and more images starting to fill my little desktop picture folder  I realized that I needed to find a better way to preserve and display these images for posterity.  So today, readers I give you the Pink Boob Awards Gallery, featuring the best of the worst pink ribbon and breast cancer awareness stuff as judged by me.  This will be an ongoing feature and can be accessed from the right sidebar at any time.

So please bring me your ridiculous, bring me your egregious, bring me your distasteful and bring me your downright nauseating, and if I think it fits the bill, I'll add it to the Pink Boob Awards Gallery for all to see.

Email me your Pink Boob Awards Gallery nominations to cancerculture@gmail.com,  and it would be great if you could also include an Internet link to the original image source.

It's Not Too Late for Breastmas Shopping....More Last Minute Gift Picks !

I was going to post a far more serious blog this week, but I'm still working on it and quite frankly my heart's just not in finishing it right now.  I just received news of an old friend who passed this week and I'm finding it a bit hard to gather my thoughts in any kind of a cohesive manner so the serious breast cancer blogging will just have to wait until I can get it together.

So I'm going back to my old standby for now.  Poking fun at all the pink ribbon crap that's out there.

And with Breastmas just around the corner, it's not too late to pick up a few last minute gifts that say "I'm Aware of Breast Cancer and Merry Breastmas".

So without further ado, here are my last minute suggestions for the breast cancer victim in your life:

1.  Breast Cancer Research Grill Charms.  For all the red meat you should be grilling and eating.  And be sure to get it really good and charcoaly.  And carcinogenic.

Make sure your steak has the pink ribbon grill charm on it
Then there'll be no mistake that you're the  one with breast cancer.  Just in case anyone wasn't sure.

2.  Pink Ribbon Guns.  Okay we've all heard about these, but they're still out there and there's still time to purchase one to put under your Breastmas Tree.  Now feel even better about shooting all those furry little creatures.  Because even though you kill things, you're still aware of breast cancer.  Breast cancer and guns.  A marketing marriage made in heaven to be sure !

Note the beautiful awareness ribbon detail on the top of the gun carriage.
And a portion of the sale proceeds go to a Breast Cancer AWARENESS Charity.  Not  research.  AWARENESS.
I feel even better about purchasing this gun now.

Unfortunately you can't buy this one.  It was custom-made and raffled off for "breast cancer charity" a couple of years ago.  But it's nice to dream, and perhaps if you're very good you can write a letter to Santa Cause and you might find one in your Breastmas stocking next year.

You've got the Breast Cancer Awareness gun.
Now top off your thoughtful gift, with matching breast cancer awareness gun cases.
Because there's nothing like being fully accessorized  at all times.
Look good and feel better because you match !

3.  Pink Ribbon Knife.  If you're going for a theme of breast cancer awareness AND deadly weapons then you can't go past a breast cancer awareness knife for the ideal awesome deadly stocking stuffer.  (Actually I stole this idea from Katie  @ Uneasy Pink but it's a fair trade for the pink garbage truck I gave her a couple of months ago ;).

Good for gutting small furry animals and lancing pesky tumors as well.

4.  Pink Ribbon Archery Arrows.  The cancerous person in your life doesn't like guns ?  No problem !  These arrows will still do the job just as well, and support breast cancer via Susan G. Komen For The Cure.  Oops I said "For the Cure".  Hope I don't find a legal summons in my Breastmas stocking.  But do yourself a favor and buy these arrows and your special cancerous person can kill stuff AND show your fellow hunters that you're "For the Cure".  Oops I said it again.  I can't help myself.  For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure, For the Cure,.......okay I'm done now.

KILLING STUFF FOR THE CURE !

5.  Breast Cancer Awareness Beer Pong Table.  Yes readers, I know.  I hear you swooning already.  Leave it to me to find the ultimate in unique and tasteful Breastmas gifts.  Now you and your loved ones can be aware of breast cancer as you gather around your new Beer Pong Table and indulge in some seriously altruistic binge drinking.  This one actually makes me feel a little teary thinking of all the touching moments you're going to have.  Enjoy !

Seriously, how can your Breast Cancer Awareness philanthropic efforts be complete without this little beauty.
BINGE DRINKING FOR THE CURE !

6.  Breast Cancer Awareness Cigarrette Case.  My last gift pick of the Pink Ribbon lighter attracted a lot of attention, and what better way to round off that gift than with a matching cigarrette case.  Now smoke in real Breast Cancer Awareness style.  Be the envy of your smoker friends.  And the most Breast Cancer Aware.

SMOKE FOR THE CURE !
Could also double as a pill box for all your chemotherapy drugs.  Lovely !