Fifty Shades of Pink — and Still No Cure

Really, I don’t even want to be writing this post.

One of the most heart-rending blog tasks I’ve had to do this past week is to re-categorize a few of the links to blogs on my blogroll, to reflect the fact that the women who write them have been diagnosed with mets since I first connected with them in the blogosphere. That stopped me in my tracks. And my list of bloggers with mets keeps getting longer.

It’s no wonder, then, that I’m so sick of the explosion of corporate merchandising known as ‘Breast Cancer Awareness Month’ — aka Pinktober — I resent even acknowledging its existence. But I’ll force myself to post some random observations, a few facts, and some links.

As usual, I will avoid shopping in certain places for the next month. The above collage is comprised almost entirely of photos I took myself on one particularly hideous October Saturday a few years ago, as I ventured forth to do a few errands. If anyone would care to tell me how selling pink Chia heads (yes, I really saw them; they are in the center of the above banner) has contributed to figuring out what causes breast cancer or how to cure breast cancer or how to prevent anyone from developing metastatic breast cancer and dying of breast cancer, do let me know. I’m always eager to advance my knowledge.

A casual friend of mine recently launched a small fundraising initiative with a friend of hers. They are selling tiny pink cat tchotchkes to raise money for our local breast health center and a local breast cancer support organization.

Our local breast health center is a pretty good place, all in all. Friends and colleagues and patients of mine have been treated there. The friend who launched this initiative was treated there. The center has had patient navigators for a few years now. The center welcomes patient feedback about their cancer experience and acts on that feedback. Their navigators bust their butts. One of them had breast cancer herself and I marvel at her energy. I believe very much in supporting local entities, and our breast health center is certainly one worth supporting.

However, I confess that the name of this fundraising initiative made me cringe. It’s called ‘Kitties for Titties.’ I don’t think this friend has read my blog, and if I run into her in the next month, I’m not quite sure what I will say if she asks me to buy a pink kitty. I may be a snarky bitch here on the blog, and I’m often snarkily bitchy WITH my friends. But I really try not to be snarkily bitchy TO my friends. Most of my friends feel the same way I do about Pinktober, but clearly not all. The ones who don’t represent a bit of a dilemma. On the plus side, I’m pretty sure that most, if not all, of the money raised, which is $4 per kitty, is being donated to the stated causes. Certainly no one is getting a six-figure administrative salary out of this endeavor, like certain other Pink Pushers I could name. But, well, they are pink kitties. Little chubby kitties. Sort of like ‘Hello Kitty’ kitties. When you see them, you’re supposed to think they’re cute. So, I’m not sure what the message is, really. Because, you know, I’ve always thought that breast cancer is way un-cute. And then there’s the titties part. One of the euphemisms for women’s breasts that I hate most is ‘tits’ or ‘titties.’ Not sure why. Maybe it’s because most of the times I’ve ever heard it used, it’s been uttered by asshat, objectifying slobs, fantasizing about snagging a quick lay.

I know, I know. What is my problem, huh? I mean, normally, I don’t object to trivializing a life-threatening disease, not to mention the women’s body parts affected by that disease. And surely it would be gauche to point out that a large percentage of women treated for breast cancer no longer have either one or both of their original ‘titties,’ because, well, they were more interested in saving their lives than keeping their diseased breasts. But, hey, that’s probably just me feeling like Grumpy Kat.

And then there’s the current kerfuffle playing out in Congress. Basically, the Republicans in the House of Representatives want to repeal the Affordable Care Act in exchange for passing a stopgap funding bill to raise the debt ceiling temporarily so that the U.S. can keep paying its bills. Meanwhile, some of the initial provisions of the ACA are in the process of being enacted, with lots of attendant hyperbole, hysteria and misinformation promulgated by those who oppose it.

So, in response to the naysayers, I would just like to point out a few things. The ACA abolishes the practice of denying health insurance to people with pre-existing conditions, and cancer, last time I checked, is regarded as a pre-existing condition. So, I’m all for ensuring that I and thousands of other American citizens can get and keep our health insurance. Also, people with metastatic breast cancer and no insurance can get Medicare coverage, even if they are not 65. Several diseases, including cancer, are included under the ‘compassionate allowance’ provision for Medicare coverage through the Social Security Administration, through which people with mets can also apply for disability income. It’s good to know that there is still some compassion left in Washington, D.C., despite Congressional evidence to the contrary.

Meanwhile, back in the land of the Pink Peril, there is still only one day in Pinktober set aside to acknowledge metastatic breast cancer. It’s October 13th, for those keeping score at home. That’s one day to acknowledge that, worldwide, about 458,000 women and men are still dying of MBC every year. One day. Pathetic.

Maybe it’s me being Grumpy Kat again, but this points to the central problem with Pinktober. It seems to me that the main reason why the public needs to be aware of breast cancer — or any cancer, for the matter — is because people die of it. But awareness of breast cancer is so last century at this point. What we need is cogent, accurate awareness about breast cancer, awareness about its causes; awareness about the continuing inadequacies of mammography, still the most prevalent screening tool used to detect it; awareness about the life-altering and lifelong collateral damage caused by getting treated for breast cancer; awareness about how and why it metastasizes and how to prevent it from doing so; awareness about the financial, physical and emotional toll that all cancer patients live with forever; awareness about what it means to live with metastatic breast cancer and to wonder how long your current treatment will continue to keep the beast at bay. None of this is cute, pink, fluffy, sexy, or ultimately even about losing our breasts.

By my criteria, most of what passes for breast cancer awareness during the month of October scarcely passes muster. Much of it is pure baloney, or worse, disseminates misleading statistics and woefully inaccurate information. Most of it is an industry, a corporate merchandising opportunity, that provides little tangible help to those who are dealing with breast cancer. And still, in the U.S., despite the fact that 30% of those diagnosed with breast cancer will develop metastases, only 2% of the millions raised for breast cancer research goes to researching metastatic breast cancer.

And that much-vaunted cure certain folks have promised? Nowhere in sight.

If I listed every pertinent link I could think of, I’d have an encyclopedia. So, here’s a few. Also, check out my blogroll if you want the unvarnished truth from those who live with mets.

Breast Cancer Action
Breast Cancer Consortium
Living With Metastatic Breast Cancer — A Global Survey
Metastatic Breast Cancer Network and METAvivor’s blog
National Cancer Institute Clinical Trials Search Tool

This entry was written by Kathi, posted on Sunday, September 29, 2013 at 01:09 pm, filed under Fighting the Pink Peril, Health & Healthcare, Metastastatic Breast Cancer and tagged , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

39 Responses to “Fifty Shades of Pink — and Still No Cure”

  1. Powerful imagery and message of the empty promise of Pinktober. Must share. Thank YOU!

  2. Thank you, Renn!

  3. Thank you for your blog. I am an 18 year survivor diagnosed at 32 years of age (yes I hit the big 5~0 this year!!). I also started a Mastectomy Boutique 16 years ago when I couldn’t find pretty, lacy bras anywhere. I still run this business, I run a support group, I celebrate survivors, help cheer on those in treatment and have helped numerous women over the years. With that being said, I cannot stand October and breast cancer awareness month!! I am a firm believer in ‘Think before you Pink’. When October 1st rolls around (and lately it’s starting mid September) I just want to hide for the next 31 days!! But instead I get up on my soapbox about the crazy pink ribbon. We have to stick together and get the important messages out to the public.

  4. It’s just nuts, Terri. I do take heart from knowing that more people than ever do get the message about pink these days. Komen’s huge bungle over Planned Parenthood funding in February of 2012 woke up a lot of people that had never thought about the issue before. Wow, eighteen years for you after being diagnosed at 32!! I’m so glad you are here to turn 50!

  5. well is so freaking frustrating. Today we were in Marshalls and Amelia picked up a pink ribbon flat iron…I said if she could find anywhere it said the profits were going directly to research i would buy it. She said it went to awareness and I lost it…yelling to her “Oh yes, because none of us are aware of breast cancer” Got a lot of dirty looks and decided against the soap box, but it is sooo freaking frustrating…

  6. Oh, Lauren!!! It’s almost seems impossible to keep one’s sanity, doesn’t it? I know now which aisles to avoid at the grocery store, which stores to avoid altogether. And if I can’t avoid it all, I stand there, reading packaging & snapping pix with my cellphone. I’ve also emailed manufacturers, when their labelling wasn’t clear about where the proceeds were going or how much of them was being donated. But I’m tired of doing it, about having to do it.

  7. Thank you for this post. I agree on all counts. The mess in Congress is driving me nuts. Do the jerks trying to stop the ACA know people are dying for want of insurance, and others are going bankrupt? I’ve also hated pinktober since long before I was diagnosed with breast cancer. That only happened last July. It’s invasive lobular carcinoma. Since it does not show up on mammagrams (a lousy test for this type of cancer according to my oncologist), it was stage III by the time I found it. I’ve had surgery, and I’m now in chemo. I was scared to death the bone scan or CT would find mets, but they didn’t. Every time, I see more cheap pink crap made in China whose only purpose is to make somebody feel good about wasting their money, I get furious.

  8. Amy, your story is yet another example of why we need better screening tools. And I’ve often thought, instead of spending money on pink crap, how about just giving ten bucks to someone with breast cancer? I’m sure we could all use the extra cash.

  9. This is so powerful and well-written; I copied your whole second-to-last paragraph into a word doc I keep of my favorite online writing. The whole concept of “awareness” bothers me, not just in terms of breast cancer either, because so often it seems like a way to make people feel good/less guilty without actually doing anything. Don’t get me wrong, there are important causes that do need attention, but so often “awareness” takes the form of spouting some vague or misleading stats and conspicuous consumption, an excuse to buy stuff and parade around in it feeling smug. Alright, I’m done now, sorry about that. I’m really just here to compliment your writing, not go on a rant. Forgive me?

  10. RJ, rant all you want. Ranting is one of the hallmarks of this blog. Thanks for the kind compliment on my writing. And I couldn’t agree more about awareness. It bothers me, too. People & corporations think that all they have to do is buy or sell pink shit or other cause-related merchandise, and they’ve done their duty. I realize that sometimes, money is the only thing we can contribute to a cause, in a practical sense. But people really need to make wiser choices before tossing away their money on any old teeshirt or event. Glad you visited.

  11. […] via The Accidental Amazon » Fifty Shades of Pink — and Still No Cure. […]

  12. Kathi, I’ve so missed your blogs: they’re incisive and thought provoking and just SO GOOD.


    And this month the IOM published a follow up about the fragmentation in oncology care and found it’s worse than ever.

    Pink October is demeaning in so many ways, and demoralizing.

    As an “Orange is the New Black” fan: here’s a quote from Piper when she doesn’t want to be baptized: ” I believe in science. I believe in evolution. I believe in Nate Silver…”I cannot get behind some supreme being who weighs in on the Tony Awards while a million people get wacked with machetes. I don’t believe a billion Indians are going to hell, I don’t think we get cancer to learn life lessons, and I don’t believe that people die young because God needs another angel. I think it’s just bulls***, and on some level, I think we all know that.”

  13. Amen to that, Judy. Great quote. And thank you so much for your kind comments. Yes, it is damaging, profoundly damaging in certain ways, which is what most folks don’t realize. Cause-related merchandizing is way out of hand, while the delivery of practical help and competent healthcare to cancer patients is remarkably inconsistent. Grrr…

  14. Darling, brilliant, accurate and powerful!
    Lost another 2 friends only the passing week, and 2 more who joined the stage 4 club. Not pink at all….
    Thank you for being such a clear voice.

  15. Oh, Efrat, I’m so sorry to hear this news. Lost a breast cancer forum friend last week myself, and another one is under hospice care as we speak. Hugs to you, sweet one.

  16. Kathi, I saw on your facebook page the idea of writing posts with the same title and it’s a brilliant idea. The more and more I hear and learn about stage four, the more frustrating it becomes. ~Catherine

  17. Thanks, Catherine. I’m tired of losing people to this damn disease.

  18. Bravo–well said. I live with Stage 4 breast cancer and walked 39.3 miles this weekend for the Avon Foundation, which doesn’t shy away from the education factor and provides funding for critical research. But every “Save the Tatas” sign and “Save 2nd Base” t-shirt along the route still made me grit my teeth because it’s about people’s LIVES, not their damn breasts. Then again, it’s also about bringing in money and directing it to the right places. So maybe appreciate what your friend is doing with the $4 kitties, even if you don’t love how she’s doing it? Sometimes the ends do justify the means. I also think those of us with cancer (or beyond it) have the responsibility to educate, educate, educate others around us. Clearly, not all of these “charities” are going to do it for us. So get on that soapbox, I say! One of these days, enough of us will be talking and the tides will have to shift.

  19. Wow, BATB! 39 miles??? Good for you!! Yes, that’s one of the problems with the breast euphemisms. It’s our lives at stake. And people just want to do something, which is better than apathy. Education and accurate info is key. It’s great that you can speak for those with Stage 4. I hope you continue to feel well enough to walk 39 miles for a long time to come.

  20. Kitties for Titties. I hope I have now heard it all. I absolutely love your writing Kathi, no nonsense, no holds barred… especially your snarking bitchiness… and I thank you for allowing your sense of humour through so that we can laugh out loud when needed. I for one, needed that. Fifty Shades of Pink, baby. Much love to you… xoxo

  21. Carolyn, I’m so glad you laughed!! Ahhh, that makes my day. 🙂

  22. Thanks for writing this. I have never had breast cancer, nor has anyone in my family (my dad died from leukemia). But turning everything pink has irritated me for years! Like the football players all wearing pink gloves and cleats. Couldn’t they just have taken the $ they spent and given it to research or aft and use their regular gear?
    And I also cringe at the Boobies/TaTas/Titties phrases. It’s like teenage boys mentality. (HehHeh, she said boobies.)
    Tonight I just took my 14yo freshman to the mall to buy – guess what – a pink shirt. Because it’s Spirit Week at school, and tomorrow is Pink Day. He ended up getting a pinkish shirt with some logo on it from PacSun, so he could wear it again. (and it’s something he would normally wear – I was putting aside my views at that point because I was glad he was getting involved with school – something he hasn’t done).
    But OMG the amount of Pink items at the mall was overwhelming and disgusting. My daughter goes out of her way to buy things that do NOT have pink on them during this month.
    I also have a problem with the amount of money spent on pink items in the name of breast cancer “awareness”. My daughter has Hydrocephalus. Even though it is one pf the most common birth defects, practically no one knows what it is and there is very little money for research, treatment or prevention. In school, when people start freaking on the Pink during October, she reminds them that this is also Spina Bifida Awareness Month (among many others).
    PS – love that quote from Piper.

  23. Trish, it’s batshit crazy. October is also awareness month for the Nat’l Lung Association, Down Syndrome, Lupus and many other causes. Good for your daughter reminding folks.

  24. Hi Kathi,

    Now I remember why I’ve missed your posts so much! It’s deplorable that one lousy day is designated for mets awareness during the month that is supposed to be all about breast cancer awareness. Really?

    I love it when you’re “grumpy”. Or snarky. Or however you happen to be feeling.

    Thank you for chiming in as this month of craziness gets going. Hope to hear more from you, my friend.

  25. Nancy, my dear comrade, it was my duty to summon up my bitchblogger self in honor of Rachel. I miss our egging each other on. 🙁

  26. Love this post! Adding your blog to my Blogroll. xx

  27. Kathi, this was a great post.
    As a breast cancer “survivor,” I have very mixed feeling about all the pink. If it is really going to research or to help women with treatments, great! But, not everything pink does. I am sick of all the so-called awareness.
    I put “survivor” in quotation marks, because am I really? I have mets. I’m in remission, but not cured. So sometimes I wonder, am I really a survivor?
    People hear remission, and think cured. Depending on who it is, I either explain the difference or just leave it alone.
    One thing that was nice about pink last year. During October, a local beauty salon was offering free haircuts and styling for all breast cancer patients and survivors. (They shampooed my post-chemo fuzz as there wasn’t anything to cut.) When I called this September, they weren’t sure if they were going to do it this year, but I made my appointment for October rather than September just in case. I have hair now.

  28. Thanks, Elizabeth J. I hope those stinking mets stay in remission for a long time. Remission and hair!! Definitely something to celebrate! xoxo to you.

  29. Thank you, thank you, thank you for such a “tell it like it is” post. I haven’t had any run ins with the Big C myself (I did have to have a good-size, albeit benign, lump removed ages ago), but a number of acquaintances and even my mother in law have done battle with breast cancer, and it’s not all cute and pink, for sure. I find slogans like “Save the Ta tas” and “Fight Like a Girl” to be very demeaning and make women come off as being juvenile.

    Yet…and this is the big yet…please tell me why these women, their friends and families seem to be enmeshed in pink culture or supportive of organizations which want to “cure” not prevent cancer (and can barely even do the former).

  30. Babs, people watch their friends and loved ones go through this, or go through it themselves, and they just want to do something, anything, to counter that miserable helpless feeling we all have when cancer shows up. I completely get that. It’s hard to maintain that urge side by side with the skepticism — and perhaps cynicism — required to look below the surface. Skeptic being my middle name, it didn’t take me long after I was diagnosed before I changed from laughing at all the pink crap to questioning all the pink crap. One of the things that really did it for me was the reaction I got from friends who had invited me to a big outdoor ‘pink party’ that was occurring just after I’d finished radiation in October of 2008. When I told them I couldn’t go, because I had too much pain, fatigue & swelling from radiation, my news was met with uncomfortable silence. My friends chose to attend this event without me, rather than offering to help me out. The extreme irony of that was not lost on me. A week later, they gave me a pink lanyard purchased at the event.

  31. dear kathi,

    thank you for this powerful, engaging, snark and bitch-filled post – just what we crave from you! no one can write like you – and I was so happy to see you back to weigh in on pinktober. I love all the de-construction of the whole shebang. but I hate the part about only one measly-assed day for breast cancer mets. I wish so much that there could be the same effort made to put the FACES and the STORIES on mets as there is to crank out all that puke pink crap. but the thing I love most about this post is the empty promises sign you created about mets awareness – that bleeding pink ribbon??? – AWESOME!!!

    much love and light to you, my friend,

    Karen, XXXXXX000000

  32. Thank you, dear Karen. It’s always lovely to hear from you. I’ve thought of you every day, wondering how you are. The new graphic & this post was the least I could do. It’s been a challenge to maintain the hard-won equanimity I’ve been fighting to wrest from breast cancer’s grasp this year. But I’ve been feeling so irritable as October approached, irritable and filled once again with grief, I realized the only thing for it was to do what I often do here, and channel it into a post. This is for Rachel especially. And for too many others I’ve lost, too many others I hold my breath for now while they live with mets. Love & light back, my friend.

  33. LOVE a woman who speaks her mind and does it intelligently, with compassion and passion! Although my blog is all about the joy that I find in life, I too, am a woman who speaks her mind (and am therefore called “aggressive” – pulease!).
    I shared your post on my FB page and will share it with patients. I found your blog via the Art of Breast Cancer and am grateful to both of you for putting into words what so many of us feel about the pinking of October.
    Each day I speak with women about their risks for Heart Disease and Osteoporosis and of course Breast and Ovarian Cancers. I’ve always felt i’ve done a good job with the heart and bone, but not so good about Breast. For the past month I’ve been working to improve my care and education about Breast Cancer. Your perspective will remain in my mind as I move forward caring for women.

  34. LB, I just checked out your blog & I’m always glad to meet another clinician. Thank you so much for your kind comments! I like to take photographs myself. No bike (except the self-propelled kind!), but a similar enjoyment of the beautiful outdoors. I’m sure your patients are lucky to have you. xo

  35. […] the month of October. And one of the most poignant things I read on the theme has been written by Kathi in a post entitiled “Fifty Shades of Pink And Still No […]

  36. […] for awareness, we’re talking about mets and I got to link them up with our own brilliant Accidental Amazon’s amazing post about pinkwashing and while a few feathers were ruffled at first, I think we all […]

  37. […] […]

  38. […] the Amazon puts it, if you’re not aware of metastatic breast cancer, you’re not aware of breast […]

  39. […] that year, we had both written blog rants for which we wanted to use that title. I published mine, Fifty Shades of Pink — and Still No Cure, the day before she planned to publish hers. So, she emailed me to ask if I minded her using the […]

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