The Pink Elephant

Let the Games Begin?

As the month of September arrived last week, so did some group messages in my Facebook mailbox inviting me to participate in this year’s version of the Facebook breast cancer awareness game. Since I deleted most of them before I read the details, I can’t tell you exactly what this year’s memes involve. But evidently, one of them is some variation in which the participant would post a status update that could be interpreted as an announcement that she was expecting a baby. Huh??

In the first place, were I, at age 57, to post such a status, it would have to be interpreted as an occurence on par with the Immaculate Conception. Since many of us were already menopausal when we were diagnosed with breast cancer, or worse, were thrust into abrupt, artificial menopause as a result of treatment, one can scarcely wonder that the appearance of all these implied pregnancy announcements might fail in their intended purpose, but instead might well shake up the Vatican perhaps. As a lapsed, long-disenchanted Catholic, I admit to feeling a certain amount of amusement at such a possible result, but not enough to un-delete these game invitations from my mailbox. Besides which, it’s the wrong time of year for this anyway, since presumably, the Immaculate Conception would have occurred nine months before Christmas, in late February. Or maybe I’d have to go Old Testament and change my name to Sarah.

In any case, the first version of this meme may have been the bra-color one, reported here by former Newsweek editor Mary Carmichael in a January, 2010 posting in The Daily Beast. As Carmichael succinctly put it, “This isn’t awareness or education; it’s titillation.” Quite a few of us who have actually had breast cancer felt the same way, and remarked on it at the time, including blogger Susan Niebur, in her moving and eloquent post, In the name of awareness.

So, imagine my astonishment to find that these memes keep resurfacing, in new and more complex variations. If you somehow missed these variations of the Facebook breast cancer awareness game, they go something like this. Only women get invitated to participate, via some sort of private message. Indeed, you are expressly instructed not to divulge the meaning of the game to any men, even though men get breast cancer, too. Then you are supposed to answer a few questions in a particular way, string the answers together, and post them on your status. The questions might be something like ‘where did you leave your purse,’ which you answer with some location, like ‘on the diningroom table.’ The next question is something like how long you left it there, which you answer with some time designation, like ‘for three hours.’ And finally you might state how many times you left your purse there this past week, like, say, ‘every day.’ So, then you are supposed to string these together, after an opening phrase such as “I like it…” Thus, your status update would be “I like it on the diningroom table for three hours every day.” After enough women mysteriously post versions of these status updates on Facebook to garner a critical mass of snickers, head-scratches, sly comments, or even national media attention, someone is supposed to say, “Ta-Dah!! Fooled ya!! It’s really about breast cancer awareness!” Kind of like playing Clue, and coming up with ‘Mrs. Peacock did it with a Spanner in the Conservatory.’ Except instead of solving a fake murder, it’s supposed to solve the conundrum of breast cancer awareness. Yeah, that’ll work.

Getting A Clue

Personally, I’ve never been a fan of chain letters, or of any of the updated social media versions of them. You know what I mean, those Facebook status updates, for example, that start with statements like, “Most people won’t repost this, but if you’re really, really my friend, and you don’t mind being publicly bullied, then you’ll be one of those few special people who gives a crap what I think of you, and you’ll repost this on your status to prove what an enlightened person you are, and also to save you the trouble of coming up with your own status update.” Call me a cranky loner — and I’ve been called much worse — but even if I agree with whatever manifesto about life, cancer or politics follows such an exhortation, I never repost these things, because the blackmail tone of the intro kinda ruins it for me.

Ditto these ersatz awareness games. Maybe it’s because I was one of those kids that got picked on and was actively, hurtfully excluded by groups of snippy It-girls when I was in grade school, but I just think there’s something so pointlessly contradictory about trying to do something noble by means of a vehicle that excludes people from the get-go. Why be sly, sneaky and coy about it? Why string along everyone who doesn’t get picked to play the game, leaving them largely clueless, in order to make your point? When the Big Reveal eventually occurs, what sort of message is everyone supposed to take away? Is this really a useful way to make anyone aware of breast cancer? In one of her October, 2010 posts about these games, called You Don’t Need Facebook To Raise Awareness About Breast Cancer, Jennifer Wright posted a photo of a miserable post-mastectomy scar, remarking, “Here’s a picture of a woman after a mastectomy. Oh my God, tee-hee, I like it with skin grafts!” That about sums it up for me.

Maybe I’m just too literal, but I think that, with all the awareness of breast cancer that has been achieved over the last twenty years or so, too many members of the public continue to be woefully clueless about the reality of breast cancer, especially when it recurs or metastasizes. Somehow, I don’t think deliberate obfuscation is the way to clarify things.

The Elephant in the Room

Over a year after Susan Niebur wrote the above post, I got to meet her, in person, at the National Breast Cancer Coalition Conference in Washington, D.C., amidst a group of other wonderful, articulate, snarky breast cancer bloggers. She is a thoroughly delightful and warm human being. You might never realize that she has metastatic breast cancer now, which saps her strength, leaves her in pain, and robs her time and energy. Yet, somehow, she continues to blog, be a mommy, a friend, an activist, and a physicist. In other words, she tries to have a life that is not entirely defined by the reality of a disease that is hell-bent on taking that life. One of her most recent posts, Tired and hurty and scared, describes this reality.

Think back to when you were diagnosed with cancer or when you found out that someone you care about was diagnosed. What’s the first wretched thing that clutched at your heart? It was fear, wasn’t it? Fear that this person might die. Because we all know that cancer can kill you. And breast cancer is one of the sneakier forms of cancer, with an infamous variety of forms, tumor types, invasive potentials and metastatic sites. Whether we are conscious of it or not, that initial fear we experience upon hearing The News is an acknowledgement of metastatic breast cancer, the kind that has no cure, the kind that can kill you. The kind for which only about 2% of all U.S. cancer research dollars is actually allocated.

How can this be? The bottom line we all fear is metastatic breast cancer. How is it possible that so little is spent on trying to understand it, treat it, cure it? How is it that so many people viscerally acknowledge the existence of metastatic breast cancer, but know so little about the facts of it? How is it even possible that there is only one day in October specifically designated for awareness of metastatic breast cancer?

It’s personal.

This is a photo of the fantastic bloggers I met at the NBCC Conference. Susan is in the front, on the left, wearing her glasses and her lymphedema sleeves. And she’s not the only woman in this photo who has metastatic breast cancer. One of the other women in this photo who has mets has become a good friend. She has developed mets that have now paralyzed her dominant hand. Despite that — and because of it — she published this post yesterday, called Planet Unicorn. If you don’t feel a sense of urgency after reading it, then you’re not breathing.

I don’t know about you, but I’m way beyond afraid. I take this very personally. The prospect of another October full of pink teeshirts, ceramic frogs, pep rallies, and ‘hooter hoedowns’ (yes, that’s for-real) makes me angry, frustrated, and heartsick. As soon as I finish writing this, I’m going to be posting it on my Facebook status. And I’m not going to bully you into reposting it. I’m just going to invite you to read it, and maybe visit some of the links in it, and raise some real awareness about breast cancer. Before it’s too late.

To learn about metastatic breast cancer, here are some more helpful links:
Advanced Breast Cancer Support Community
Metastatic Breast Cancer Network
Metavivor Research & Support
Who Will You Remember on October 13th?

Please click on the post title or the comment link below to post a response.

This entry was written by Kathi, posted on Monday, September 05, 2011 at 12:09 pm, filed under Attitude, Fighting the Pink Peril, Making A Difference, Metastastatic Breast Cancer and tagged , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

19 Responses to “The Pink Elephant”

  1. Thank you for articulating what I could not. Love you.

  2. Thank you for this post Kathi. Without metastatic breast cancer being atbthe forefront of everyone’s minds, then there really is no conversation to be had abou breast cancer, period. Thanks for reminding us what “awareness” should really be about. Rachel xxxx

  3. We’ve all probably heard the phrase “serious as a heart attack.” So I am not sure why breast cancer is supposed to be a Facebook laff riot.

    Thanks for keeping it real!

  4. I’m always completely disheartened when I see games, memes, and festivities in the name of “awareness.” Awareness of WHAT? Pink unicorns and lemonade? The fun-loving “perks” of a breast cancer diagnosis?

    I received an invitation to one of those FB ‘events’, and I messaged the sender to ask what people were being made aware of, e.g., the fact that breast cancer exists? She said, “Yes, I think so.” Breast cancer exists. Got it. As you point out, we already know this.

    These games and “awareness” activities are detracting attention away from the realities of breast cancer. Some are siphoning funds from research that could make a real difference. Others are spreading misinformation. Still others are just jumping on the pink bandwagon to increase their revenues and improve their public relations.

    In the meantime, somewhere between 150-250 thousand people are dealing with metastasis and the reality that treatment never ends and except in extreme cases the disease eventually wins. It is indeed personal (as well as cultural, political, and economic). Thank you, Amazon!

  5. Disturbing information! I wonder at the huge numbers of women who die from complications of Breast Cancer Metastasis – not counted; cause of death being from heart, kidney, liver failure, or another cancer. Also, physicians are reluctant to even diagnose, discuss, or treat Metastasis. The Cat with the Canary syndrome, perhaps?
    Thanks, for the wisdom, links, and awareness on many levels!

  6. Kathi,

    This is an outstanding post. Bravo for focusing on what’s real and not these silly breast-cancer games. If people think that breast cancer games do anything useful to prevent it and prevet mets, they are saddly mistaken. I don’t even think society takes breast cancer seriously. If it did, wouldn’t more than 2% go toward research.

    And I also feel dread that Oct. is coming. Maybe I can just not go into a store with all the pink hoopla. Well, then, that’s impossible.

  7. Brava Kathi! Everyone already said what I wanted to say about your latest brilliant blog entry. And they said it more eloquently, elegantly, appropriately angrily, and succintly than I would be able to manage at this late hour, in my cranky-because-my JP-drain-and-tissue-expanders-hurt-like-hell mood. So I’ll just add what I am thinking, stream of consciousness-style, if that’s okay: perfection. You covered all the bases and then some. And for the love of God, no, I do not need a pink Kitchenade mixer! I’m so sad that the pink mafia has claimed October. I had always loved October (Octoboo!) with its cooler temps, leaves beginning to change color, that “beginning of the school year” energy and excitement decades after I’d last been in school, and, of course, Halloween! My favorite holiday! Now I dread it. I dread my formerly beloved October because as if I weren’t already thinking about breast cancer enough (every single day, usually multiple times per day), in October, the pink mafia is relentless. You can’t watch tv, walk into a store, pick up a newspaper, or skim your town’s calendar of events while you drop off your poisonous recyclables without having PINK! BREAST CANCER AWARENESS MONTH! PINK! HAVE YOU HAD YOUR MAMMOGRAM YET? PINK! HAS YOUR FRIEND/MOTHER/ACROSS THE STREET NEIGHBOR HAD HERS? PINK!

    Enough! Enough of the pink awareness crap. Fuck awareness. Find a cure! (And I can say that without guilt because I am pretty darn sure that EVERYONE IS AWARE!)

    Love you, KK!

  8. Once again, very well said. Like you, I take this all very personally too. Sometimes it feels like we are just spinning our wheels, but eventually the message has to get out. The one about cancer’s reality. It has to.

  9. You really are a fantastic writer. I just love reading your posts. Sorry I do not comment often enough.

    Thanks for the heads up on all the Facebook crap.

    Hugs, Traci

  10. <3 Love the picture of the Pink Elephant in the Room.
    Your design? :o)

  11. Thank you, everyone.

    Nicole, I’m ready to take back October myself, and I pick the color orange, for the pumpkins, the autumn hue of sugar maple leaves, candy corn, the glow of the setting sun, and a whole lot of other things I, too, have always loved about October.

    Indi, I borrowed the elephant from a clipart site and then edited it to my own devious purposes. 🙂

    Traci, it’s nice to see you here; I have been thinking of all my peeps in Texas today. Hope you are not at risk from those awful fires! You, too, Gayle!! Lordy, if I could send you some of our rain, I would in a heartbeat.

    Katherine & CCC, you’re always in my heart.

    Nancy & Bonnie, Big Sigh…we just have to keep on keeping it real, in whatever way we can.

    Every one of us remembers at least one someone we have lost to this disease. And, like the real elephants, we never forget.

  12. Another brilliantly written blog entry, Kathi!!!

  13. […] that breast cancer cannot be reduced to a silly game in this way, and as we have come to expect from Kathi, her response has been intelligent and informative and leaves us in no doubt of how we can truly […]

  14. Wow, I have to disagree. I live with MBC and I for one, have a sense of humor not about MBC but about these types of “games” as they are meant as just that as a poke at the seriousness yet stupidity of the pink campaigns themselves. Clearly everyone is entitled to their own opinion and this latest game, although odd, was not intended IMO to do anything but bring a group of woman together. That of course does nothing to in fact help anyone with any form of BC but I am also big believer in humor, fun and a good attitude.

    For me personally, my circle of family of friends far and near know first hand the reality of MBC in my life and my young children’s lives. I don’t take these Facebook games as an affront to that but as a community recognizing that they can’t do anything to help me personally but spread a little fun and mischief. Although this is a serious, life altering, debilitating disease I am always searching for a smile and a laugh. It makes the awesome infusion room that I live in so much more palatable. Lighten up is my motto…

    This coupled with the not so fun chemo I take daily help me stare down the mets I have been riddled with. These distractions and people who don’t often join any conversation, helpful or not, is not seen as an attack on people fighting for their lives or pushing the medical community for real progress, it just a way to smile on the way through.

    Obviously for most of us left infertile or past the age of reproduction the latest game was less than smart but what true harm, other than a “bully” campaign that you clearly received and many of us did not, did posting and participating with other women affect or offend you? I do see your point but I also try to not make every second of my life dyer and reiterate to every single person I know or communicate with on FB the fact that everyday I am living on borrowed time. If people want to join the conversation peripherally I think it is better than not all, even through stupid games.

    I think you are brilliant and I look forward to all of your posts. I hope my dissension is not offensive, as it is not meant that way at all.

    best wishes,

  15. Michelle, if we all thought the same thoughts, life would be boring indeed! And your comment is not offensive at all. I do have a sense of humor, as many of my other posts illustrate (I hope!!). So, it’s certainly not that I object to using humor to advance an opinion or raise awareness. But I don’t know that any cause is well served by humor that is so indirect, no one but the ‘in-crowd’ invited to participate in it knows what the heck the cause is. What’s the point? In the case of the Facebook games, it’s a long wait for the punch line, and the punch line ends up being breast cancer awareness itself. Just don’t get what this accomplishes, really.

    But I welcome your comments, and I wish were not dealing with mets, like so many other women I know. I am planning to focus on MBC in my posts during October, and perhaps to republish previous posts that focus on it. It seems like there are a lot of us who are feeling the same urgency to bring more attention and research to MBC, and I hope that together, all of us in the blogosphere can make some kind of difference in raising awareness on this and changing the direction of future funding for research. And I hope you will comment again.

  16. Kathi, you so eloquently express my exact sentiments. I especially liked your diatribe against chain letters and those facebook reposting requests that make you feel guilty if you don’t go along with the game. Phooey on them! I’m beyond caring whether I hurt peoples’ feelings. And I’m with you: I’m dreading the pinkfest coming up so soon. It’s time to get real – real angry at those who would exploit us by titillating others or hawking merchandise. Love the group picture. Wish I could meet in person everyone who is in it.

  17. This is fantastic. Eloquent and full of really good links to stuff that needs to be read. <3

  18. Thanks, Wendy, and I am very much enjoying your contributions to the fund of enlightening snarkitude!

  19. […] five years ago, I wrote another post about these so-called games [The Pink Elephant]. My sentiments about them remain unchanged. I hate blackmail, I hate social media bullying, and I […]

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