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Tuesday, May 18, 2010

Why I hate pink ribbons or how the personal became political

So I got the test results back from my geneticist: negative-negative, for BRCA1 & BRCA2. When I talked with her over the phone she said that this was very good news because it means that they don't think I will develop ovarian cancer from this cancer and because the kind of cancer I have is not genetically transferable, it means that any daughters or granddaughters I have will not have to worry about being susceptible for breast cancer.

I thanked her for explaining the nature of this good news, but I also told her that while I appreciate that I may not be at greater risk for ovarian cancer, the truth is that genetics is a new science and there very well may be a genetic link in my family in terms of breast cancer (with 3 aunts you have to wonder) and that with the high rate of colon cancer in my family, I have other things to worry about in terms of a different kind of cancer one day appearing and just having breast cancer leaves me feeling vulnerable to metatacization in the future. As for not passing it on to any future daughters or granddaughters, well, that is a moot point since we won't be able to have children after the chemo treatments are over.

I said all of the above not in an angry way (although lets face it, I'm sure I came across as edgy because the content is edgy) but as matter-of-factly as I could because I am in a matter-of-fact kind of place. Actually, I'm lying. I'm angry. I didn't want to get angry with the geneticist on the phone--she was just doing her job and was trying to convey to me that these test results were good news for me. And I suppose if I had daughters or granddaughters, I would be comforted by that news. But since fertility stuff is one of the angry-making things about the cancer and chemo, it became another reminder of things needing to be readjusted in my life.

So that takes care of the medical part of this post. I did talk to the nurse oncologist who is supposed to be guiding me through this process. I think she's a bit annoyed by me--by the email messages and my constant questions (because lets face it, I have a lot of questions) and my desire to figure out when this will all be happening--to know how and when and why and where. I don't know whether I am anomalous in my inquiries and desire to know. Perhaps most women accept their doctor's prognosis and are content with just waiting and adjusting their schedules at the last minute. I can't believe that I'm alone in wanting a timeline and to know exactly who I will meet with and how long the treatment will last and where it will all take place. And yet in talking to the nurse yesterday on the phone I felt like she kept saying I'd have to wait to talk to Dr. Carey (who, by the way, does not provide her email, smart doc--guess she knows her patients would be hounding her all the time). Apparently talking to Dr. Carey won't happen until Thursday, June 3--but I have to wait for another woman from Oncology, the "scheduler" to call me to confirm my appointment with Dr. Carey to make a "plan" and then to figure out which day of the week, Wed. or Thurs., I will have my once-every-two-week-four-to-six-hour chemo appointments.

So the remainder of this post is going to be about why I titled my blog, "No Fucking Pink Ribbons." And yes, I'm not including the little asterisks--I didn't think Blogger would let me say "fucking" in the title of the blog but in this post like in others, I swear when I feel it is appropriate. If I offend anyone's sensibilities, I do apologize, but the truth is, even before I got angry about my cancer I really liked the word "fuck"--I mean, it is my favorite swear word (I bet many of you like it too!) and has a multipurpose multi-functionality that I've always appreciated. It can be a noun "dumb fuck," a verb "fuck you," an adjective "fucking jerk," an adverb "fucking tired," and of course, an expletive "FUCK!"

I must confess something: I did not revolt against the pink ribbon until the day I entered into the UNC Lineberger system--the day I attempted to get a biopsy of my left breast. That day, the day I'll call the clusterfuck day, was one of those days when nothing goes right. We all have those days--you just miss the bus and have to wait another hour for the next one to arrive. And you're taking the bus because your car has a flat tire/engine won't start/keys are locked inside. And it's raining and your umbrella is broken so you are holding up one end of it while a car comes by and splashes a big puddle of water all over your brand new suede shoes.

Anyway, the day I attempted to get a biopsy done, I was led into a patient room where I passed by a totebag with a pink ribbon emblazoned on it, and as I entered the room I muttered "I fucking hate those pink ribbons," to which the nurse I was with paused and said, "I'm sorry, what did you say?" And I said, "Look, if it turns out that I do have breast cancer, I am NEVER going to wear a pink ribbon." Luckily she laughed.

I think about that visceral reaction--and this was before I had the biopsy, before I got the news that it was cancer, and well before learning about the cancer in my right breast or the future with chemo and the choice I'd make about the bi-lateral mastectomy. I had never had that reaction before to the pink ribbon. In fact, I had purchased a whole sheet of stamps from the post office to support breast cancer research.



Matthew purchased a keychain with a pink ribbon logo on it and gave it to me because he knew I had aunts who had breast cancer (and he has a pink ribbon tie for the same reason--a tie, he now says, he will never wear) and I have a pink golf glove and pink golf balls that were given to me as a Christmas gift from Matthew's sister because she knows how much I love golf, pink is her favorite color, and she also wants to support breast cancer research. And I have purchased the more expensive flower arrangement for an aunt who had breast cancer because it had the pink logo on it and Proflowers said that 10% of proceeds would go to breast cancer research (the flowers were, of course, pink--but at least they were those nice lilies--the ones they call "Oriental" but for obvious reasons, I find that problematic as well, although technically of course objects can be and are "oriental" whereas people: never).

So why, when faced with the reality that I may be one of those who has breast cancer, did I rebel against the pink ribbon? Why did I have such a visceral reaction?

I think on some level, even while purchasing that pink floral arrangement and the stamps, I knew that all of this is for show or that it's a smoke screen for the bigger issues that are masked by the pink ribbon symbol. I mean yes, breast cancer is not an automatic death sentence. And like with all cancers, there have been tremendous gains made in terms of research and knowledge and drugs and treatments. However, there's still a reality of death that haunts anyone who has received a cancer diagnosis. Just yesterday I was reading an obit for Lynn Redgrave--she died a few weeks ago but I was catching up on my magazine reading and it was only in reading her obit that I realized she died from breast cancer--she had been "battling" the disease for 7 years, according to the obit. And she finally "succumbed" to the disease.

That's the reality that the pink ribbons mask. At the end of the day, despite all the treatments and surgery. No matter how many Avon walks you participate in, how many yoplait yogurt lids you mail off, how many buckets of chicken you eat, how many stamps you purchase or pink sweatshirts you don, at the end of the day women still die from this disease. I may die from this disease. I am going to endure months of a chemotherapy treatment so intense that my hair will fall out, I will more than likely develop mouth sores, I am supposed to avoid knifes and other sharp objects because my blood will have problems clotting and I could bleed out, and there are numerous other side effects too personal to get into.

And all of this makes me angry.

The whole cult of perky, positivity that the pink ribbon symbolizes makes me angry. And I was made even angrier after reading this book, Pink Ribbons, Inc.: Breast Cancer and the Politics of Philanthropy by Samantha King (shout out to Sarah and Jeremy for sending the book to me and Matthew--the author and Jeremy went to grad school together). The book is a must read for anyone interested in the politics of philanthropy, in general, and in cancer philanthropy, more specifically. It charts the problematic nature of raising funds for breast cancer and the breast cancer industrial complex that has emerged. In particular, I found this to be most egregious:

"National Breast Cancer Awareness Month (NBCAM), founded in 1985 by Zeneca (now AstraZeneca), a multinational pharmaceutical corporation and then subsidiary of Imperial Chemical Industries, is possibly the most highly visible and familiar manifestation of this alliance [large corporations, major cancer charities, the state, and the media]. AstraZeneca is the manufacturer of tomoxifen, the best-selling breast cancer drug, and until corporate reorganization in 2000 was under the auspices of Imperial Chemical, a leading producer of the carcinogenic herbicide, acetochlor, as well as numerous chlorine and petroleum-based products that have been linked to breast cancer."

The pink ribbon-ization of breast cancer is huge business. From cradle to grave, various industries are actually making money off of women who get breast cancer--and the cult of positivity that surrounds breast cancer allows for this kind of neutralizing feel-good, just-wear-a-pink-ribbon-but-don't-ask-how-you-got-cancer kind of mentality.

And I don't mean that we should all be questioning whether we ever put plastic in the microwave or for me to second-guess every time I set foot on a golf course (because golf courses use an exorbitant amount of pesticides to keep their greens so green--something I was aware and conscious of, of course, but didn't think I could ever get cancer from just setting foot on a golf course). I mean we should be questioning the bigger picture--the bigger environmental picture about clean air and water and land. About toxic fumes that industries and corporations put into the air. About what is in the ground water and what big agri-business puts into the food in our supermarkets and how much we can trust the organic label.

Of course we can each take individual responsibility for the choices we make. But we can also and should also ask questions of the major corporations and businesses who profit off of our ignorance. I mean, cancer aside, lets just look at what happened on wall street over the last few years--and that should make us ANGRY. Not tea-party-crazy-racist-angry, but angry in the sense that we should try to take action.

And perhaps it wasn't until the reality of what it would be like for me to be a breast cancer victim (you aren't supposed to use the "V" word but I think it's appropriate here) hit me while on my way to be examined by yet another person at the UNC Lineberger Cancer center that I realized that this was all too personal. And because it is so personal, it became political for me--meaning, I can't just accept the pink ribbon uncritically. Maybe it's because I'm an academic. Maybe it's because as a kid I always wanted to know why. Maybe it's because I'm just someone who doesn't like pink or sappy, sentimental feel-good simplistic band-aids for bigger-than-life realities. And maybe it's just that I'm pretty pissed-off at having cancer and need a scape goat and the pink ribbon culture, in all its corporate sinister connections, is as good a place to vent as any.

If you made it through this far you deserve a ribbon of your own--I'll be heading back to the land of cell phone service this Friday, although I will also be starting the chaos of wedding prep that weekend, so if you do call and I don't call back right away, my apologies--I love the messages and will try to respond when the glorious craziness of wedding prep and out-of-town guests dies down. And Jennifer B. if you're reading, I promise to also post pics here from the wedding in about 2 weeks!

14 comments:

  1. Thanks, Jen, for this and all of your other posts. I know you have many reasons for this blog, but I really do appreciate being able to read them. I'm so much farther away from you than I would like to be, but this will have to do for now. One of the blog's effects for me is just that it reminds me why I'm so glad that you are my friend.

    John

    p.s., I can't wait to see the wedding pics, too!

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  2. what john said. i am grateful to be able to hear/read these words in your voice. I miss you.

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  3. Jennifer, considering the title of your blog and your funny discussion of the word "fuck," I thought you might enjoy an essay I read years ago (it was memorable, obviously): "Does Sex Still Exist?" by Michael Vincent Miller, collected in /Dumbing Down/ (1997). Despite Miller's concern, I don't think the word has lost its cachet. http://books.google.com/books?id=-iUEBfvoP_cC&printsec=frontcover&source=gbs_v2_summary_r&cad=0#v=onepage&q&f=false

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  4. Thanks for saying this for the rest of us!!

    I couldn't agree more about your visceral distrust of pink ribbons -- you should take a moment to research Nancy Brinker (sister of Susan Komen and founder of the mega-money-making-Foundation), her ties to George W. Bush, and her (ex?) husband's ownership of a mammography manufacturer. I also DETEST the attempts to be funny with the "Save the Tatas" cute crap -- SAVE THE F'ING WOMEN!

    I have Stage IV BC, metastasized now to bones, ovary, and liver, and just got my "it's not genetic" news this week -- though my Mom was diagnosed the same day with Stage III BC. A freakishly horrible coincidence I'd rather NOT share with dear ol' Mom -- but clearly if not genetic we both have been exposed to deadly toxins -- and where's the fight against THAT?

    By taming it into something seemingly sweet and "manageable," the pink ribbons obfuscate the realities, including the deaths of amazing, amazing women, too soon (5 friends in 6 months from BC).

    I sincerely wish you well. (Are you the beautiful just-married woman I met at NCMA's green outdoor pavilion one gorgeous afternoon in September?). I wish you rapid recovery, and complete protection from recurrence of this scourge.


    All good,

    Barbara

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  5. I love this post. My mom died of breast cancer on 2/7 of this year and I googled "fuck the pick ribbon" and there it was. I'm glad to have found your blog -how refreshing to find someone that isn't gushing about hope. I wish you a long life. My advice for you is once it's in remission, pay attention to random pain - and swollow the pill they give you for keeping it in remission. It took the docs forever to figure out my mom's cancer was back in her bones. It doesn't always show up in blood tests etc.

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  6. I am so glad that there are angry people!I own a shitload of pink stuff and walked on behalf of friends and my sister-in-law.This week,I essentially got on the wrong bus,and apparently cannot get off for quite a while.I keep plotting ways to keep working,despite whatever I need to have done...I get told to take care of myself,but I am my best self when I do the job I love.I will keep reading your blog,because at least you make sense.Keep on.

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  7. Hi Jennifer,

    I loved reading this post! When I first found out my mum had cancer (but that they thought it was 'curable') I was all for the whole 'pink ribbon' stuff. I even went into cancer research, and I loved to think that people with cancer, like mum, were all so 'brave'.

    Then her cancer returned and reality hit that she was going to die. Well, now it really annoys me when I see people post stuff on their facebook wall 're-post this if you support breast cancer' and 'buy this water bottle with a pink lid to support cancer' and 'stories from cancer survivors - their battle through cancer' blah blah isn't everybody with breast cancer so brave and inspiring. It's like some massive delusion: if you get diagnosed with something like breast cancer, then you must be really brave and such an inspiring person, I always roll my eyes when people say that to mum. What do people think happens when you get diagnosed with cancer? Do you think that 'normal' people just disappear, but the brave and honorable ones stay behind and 'bravely' volunteer for chemo?

    Anyway, it's great to read something that doesn't make cancer sound like a fairy tale. And it was great for me to vent.

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  8. Thanks everyone for your posts--I realize I am late in commenting (well for everyone but the last "Anonymous")--for a while, my unspoken and unacknowledged policy was that I wasn't going to post comments or respond to people's posts--that I was just going to say what was on my mind and not worry about communicating or establishing dialogue or engaging--I think it's where I was at and what I needed to do through the initial stages of diagnosis, chemo, surgery, recovery.

    And now that it is a year past the date of my initial diagnosis, a year past my first round of chemo--I have some more distance and certainly less anger (anger's hard to sustain, at least at the level of intensity I was experiencing it in this post) although I should say it doesn't mean I have embraced the pink ribbon--I still hate those fucking things!

    I appreciate that anyone would read this blog beyond my immediate friends and family--I appreciate well wishes, notes of comimsseration, and venting--esp. venting--I hope you feel free to come back and share whatever you want to share--venting and anger I certainly understand!

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  9. Thank you so much for your honesty!

    I'm sick of the pink cult and this fake portrayal of what cancer should look like! I didn't want to say it though. But you inspired me and I did actually say it... ..what "it" is from my perspective (my perspective being a disgruntled hairdresser that's sick of hawking pink cans of hairspray to smiling idiots who think they've cured cancer by buying Paul Mitchell)

    Please feel free to check it out if you're bored, and thank you again for sharing!
    http://www.mynameisntmediumcoffee.com/2011/10/i-hate-breast-cancer-awareness.html

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  10. I loved your post. First I started hating the oversaturation of pink washing just because its a marketing gimmick. It doesn't educate anyone about causes or prevention, at this point everyone is aware breast cancer exists. Then as time went on my hatred became more personal, having been touched by prostate cancer. September is supposed to be prostate cancer awareness month. However everyone has this pink culture so far up their rears they won't do anything for prostates. I have talked with innumerable companies asking them to partner with or do something for the prostate cancer foundation they laugh in my face. How many people even know what a prostate is or what it does. So I ask how many people have been educated or made more aware by pink ribbons? Now how much attention has been taken from other cancers and diseases by the pink ribbon. Oh and as a side note, I have read and listened to many stories about men diagnosed with breast cancer turned away by koeman just because they are male.

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  11. Hey, you stole my URL idea! Kidding, but I am feeling very much like this, having just been diagnosed with Stage 2A bc. Brain is reeling and I may not always think fuck the pink ribbon but right now (with fucking Breast Cancer Awareness Month looming, no less!) that's my take on the whole hot sticky mess. keep writing!

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  12. Hi Jennifer,

    I'm listening to you on the State of Things right now - and all I can say is here here! I'm a 17-year survivor, and the pink ribbons always have made me very uncomfortable. For one thing, I'm not a "pink" person - almost hilarious that I would get, of all the diseases out there, I would end up with the "pink" one. :-)

    Beyond that, though, I am not my disease. I used to do Race for the Cure, but stopped, partially because of their stance on Planned Parenthood, but also because I felt really really uncomfortable wearing my "special" Pepto Bismol pink shirt and having my name called out as I crossed the finish line. The last year I did it, I refused to wear the "survivor" t-shirt, because at 15+ years out, I don't identify with that label so much anymore.

    I chose to not do reconstruction, and for me, it was the best decision ever. I do typically wear a prosthesis - especially for business-ish stuff - but for working out, and just hanging out, I often do not. Since I have "one headlight out" as my hubby likes to say, I can look a tad lopsided, but very comfortable. To each his own. I'm happy I did not take that step.

    Anyway - thank you for speaking up about this. It was wonderful to hear someone thoughtfully express many of the things I've thought for many years.

    Barb Baranski

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  13. Barb,
    Thanks so much for your comments, on both my interview on "The State of Things" and the blog. It inspires me to write new content. And, of course, I am always happy to hear stories from women who have gone through similar experiences and have similar attitudes and beliefs about pink ribbon culture and reconstruction -- I really do hope I don't come across as too judgmental--I think we all have our own personal reasons for making our choices--I just want there to be more dialogue and different stories, especially about cancer. Thanks for reading (and listening)!

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  14. I can understand people's concern about the aesthetics of the pink ribbon, like I've heard a lot of people say how they don't like perceiving cancer as a 'sweet' or particularly gendered thing. Reading your blog post about it has really enhanced my understanding, although I'm still not quite sure where I stand!

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