So Let Me See If I Have This Right (In A Nutshell)

If you have breast cancer, and you dance around before your mastectomy for the willfully ignorant masses and post it online, you get to be hailed as an inspiration, and have mainstream media journalists proclaim your actions as THE way to do cancer.

But.

If you have breast cancer, Stage 4 no less, spend many years using social media to try to tell another side of cancer, the one the mainstream media will not show because it is ugly, involves the likelihood of death (“losing the battle”), the one that defies Pink, and you get not one, but two, insensitive op-eds written about you? You are called unethical? Judgment of you is called for and encouraged in regards to your behavior? And you are called a standard bearer for warrior culture when you’ve rejected the battle metaphors?

So, do I have this right?

Okay. Just checking.

Thanks, y’all. It’s been an eye-opener. Oh who am I kidding? No, it is not such a surprise as I step back and reflect (not reflexing, you know what I’m talking about). Same shit, different day, just more extreme.

Advertisements

Author: Cancer Curmudgeon

Oct 2010 diagnosed with Stage 3, HER2+ Breast Cancer. Completed treatment Jan 2012. Waaaaaay over pink. Applying punk rock sensibility to how I do cancer.

27 thoughts on “So Let Me See If I Have This Right (In A Nutshell)”

  1. Brilliant, truly brilliant! When I read Bill’s crap, all I could think of was the pre-mastectomy-dancer who was virally praised – because she is a “good” cancer patient – who apparently is good because she decided (unlike me) to dance about her impending amputations. I don’t get it. I have no problem with anyone dealing with their cancer in any way that they wish, but this idea of a right and wrong way to do it, well it is making me sick. Anyway, your post is brilliant, so SPOT ON! Thank you! xoxo

    Like

    1. Thank you so much! I’ve been working on a typically (for me) long winded post about the dancer, and perhaps I will finish, maybe I need to even more now—because I feel very strongly about this issue of “only one kind of story about cancer is allowed”.

      Like

      1. I so agree with you on this notion that only one kind of response to cancer is allowed. It is one of the things (among so many things) that I have found so troubling and disturbing about the Susan G. Komen Foundation – that they embrace one kind of patient and one kind of survivor and no real mention of metastatic breast cancer… Dying doesn’t fit within their corporate image. They just want everything wrapped up in a pink ribbon. And I think this is true of other organizations as well and it definitely seems to be what our culture is willing to embrace…maybe even needs to see…sigh

        I look forward to your next post!
        Xoxo
        Lisa

        Like

  2. OMG, I love this! I was thinking the exact same thing! Have you seen the TV commercial with that ridiculous dance in it? I saw it during the Golden Globes and couldn’t believe my eyes. I forget what the commercial was for, but sadly it’ll likely be on again.

    Like

    1. Oh yes—the ad during the Globes made me nuts! I’m a film geek and an awards show maniac, so I tried not to let that commercial ruin the night for me. As soon as the voice over started with the “women who inspire….” crap, I just thought “oh no, here it comes” and sure enough. I’m sure her segment was the same amount of seconds as the other women in the ad, but man, it seemed sooooo long, as I sat there grinding my teeth. I think it was for Bing. But I don’t wanna look it up, ya know?
      Thanks, as always, for reading my blog, Nancy, I am honored.

      Like

    1. Ha ha, maybe you read some of my other posts—I too live in a rural area that is quite Pink in October, and nearly everyone I’ve met in cancer world embraces the Pink and/or warrior culture that I cannot quite stomach, so yeah, I’ve mentioned the loneliness of that a few times. Hello from one Rural Nation to another, friend.

      Like

  3. It’s been a while since I saw that stupid “exhibition” on facebook and I could NOT get my mind around how someone could be CELEBRATING like that! Heck the last thing I wanted to do before my bilateral mastectomy was to do some imbecilic dance! Society loves blindfolds to hard truths no matter how they are disguised, including moronic, nonsensical behavior as that dance.

    Like

    1. Yes I saw it a while ago too, at the same time there was a hullabaloo about a local woman in my area also held up as THE way to do cancer. I’ve started writing a post about it, but Life, and then these events AND your wonderful recent inspiration for me, have distracted me. Hopefully, I get around to it. As I mentioned in another reply, I feel pretty strongly about the wrong-headed (to me) notion that only one way to do cancer gets the glory.

      Like

  4. You are right on. There is a connection between the dancer being praised and Lisa being lambasted.
    It’s simple. If you fit the pink pattern, the happy dancing breast cancer patient, you are praised. If you don’t fit the pattern they want to see, if you have the nerve to be stage 4, you are supposed to crawl quietly away and not remind people what breast cancer really is.

    Like

    1. You are absolutely right, and this idea occurred to me a few days ago, when I’d only read Ms. Keller’s essay—before I stumbled upon his (both times via other folks’ blogs). There are numerous issues that need to be discussed about all of this-the judging, the lack of doing homework on his part, the idea that making choices public somehow invites input (which I tackled a few months ago in a post called If You Don’t Approve of Preventative Mastectomy, Don’t Get One). Many important points have been covered by many blogs and journalists in the past few days, and a few things have not—maybe I’ll write about it if I can wrangle the time. But this incident reeks of rewarding one patient and punishing the other, and I just thought it was the underlying issue that most needed calling out.

      Like

  5. I love following Lisa. She shows me what stage lV bc is like. I know some people don’t like reality and don’t want to know the truth. You know the saying “You can’t handle the truth!” They want to keep living in LaLa Land where you only see happy “bc survivors”. I was “a survivor” too until it recurred and I’m in stage lV now. I have to live in reality now and I appreciate others who do too. Keep it up Lisa. Love and prayers.

    Like

  6. Brilliant, to the point, and dead accurate. Pun intended.

    People are afraid of death. They are fascinated by death…but they are terrified. They want the survivor story, the dancing women, the pink pony tails, the feel-good ending. But when they read our side, those of us with end-stage cancer and it gets too truthful, they feel bad – like it could happen to them. And when they feel bad, they blame the messenger for making them feel bad. How dare we? How dare we share our ugly lives, our pain, our suffering? Don’t we know it might disturb somebody? We must be bad people. We must be getting free healthcare, petting dogs for on the taxpayer dime, we must have something to hide for sharing so much but respecting the privacy of others in our lives.

    We should not be treated, but should go quietly so as not to make somebody uncomfortable.

    It’s fascinating that this poor woman, this Emma Keller, blogged her own DCIS diagnosis, saying she needed anti-anxiety meds from the day of her biopsy, and how she later cried to her doctor, on her last day of treatment, (only 40 days from diagnosis), saying she couldn’t take it anymore. How dramatic.

    Clearly, she never encountered real suffering and it made her uncomfortable. She thought she had the lock on suffering, and she discovered she doesn’t.

    There is no moral ambiguity about blogging/tweeting/facebooking your experiences in life, whether they be good or bad. The only immorality is reading something that makes you uncomfortable and blaming the writer for your discomfort.

    This has only strengthened my resolve to be unsparing and to go as long as I can, telling the truth of terminal breast cancer. I stand with Lisa.

    Like

    1. Thank you for you wonderful comments.
      Yes, to the point (for once) for me; I tend to post long-winded rants, not short ones.
      As I’ve said in other replies here, there are many issues this incident has raised that should be discussed, and some are being written about, wonderfully well. A few others are missed, and if I get time, I’ll write about it. But I’d already been contemplating the issue of inviting unwanted advice and judgment by blogging personal choices, in fact I’ll likely re-post something I wrote a few months ago with further commentary.
      To your statement about making others uncomfortable, well, you might like my previous post (which I wrote before all this fit hit the shan) Oh I’m Sorry, Is MY Life Threatening Cancer Making YOU Uncomfortable? Sometimes I’d like to tattoo that sentence on my forehead.
      I saw your comments on other blogs and articles about Keller’s own DCIS and I was shocked, I did not know that. It raises a very awful issue of cancer patients who judge other cancer patients, which I’ve written a tiny bit about, but there is much, much more to say about that, that is a tough, harsh topic. It certainly happened here.
      I agree about this as a resolve-strengthener, and I too, have been re-energized and reminded that reading and writing about the other side of breast cancer must continue. I confess that I’ve fallen away from reading and writing lately, finding myself busy with other aspects of life and being lucky enough having had “only” Stage 3 (but a really big tumor), I’ve begun to move past it all. But I know I am not, that is why I do keep engaged. It baffles me when some folks say in comments sections of cancer articles that they are over the cancer, it is behind them, and those of us writing/”whining” should just get over it too. Yet, there they are taking time to not only read the cancer articles, but comment too. How is that being over it? But perhaps I am unfairly judging others by my own standard or concept of what being over it is. Oh well, what do I know.
      Again, thank you for your thoughtful, inspiring comment.

      Like

    1. Hi Renn—did you mean this comment for me or another blog? I’m not Marie. If you did mean it for this post, thank you very much—and I cannot wait to read your post—thanks for sending!
      As I’ve mentioned in other replies, there are many issues this incident has brought up that need discussion. The judging, the lack of doing homework on his part, the idea that making choices public somehow invites input (which I tackled a few months ago in a post called If You Don’t Approve of Preventative Mastectomy, Don’t Get One). Much has been covered for sure, and a few things have not—maybe I’ll write about it. I’m no psychologist or sociologist either, but I do think this is the underlying issue and it needs to be acknowledged. Maybe now, there can be some honesty and realness in conversations about breast cancer.

      Like

    1. NOT me, I was using the “you” to refer to all cancer, especially breast cancer, patients and how we are, regarded, expected to behave, etc.
      The first paragraph refers to a video that went viral last Nov, in which a doctor danced in the OR before her mastectomy, and was hailed as the gold standard for facing breast cancer, much to the chagrin of some breast cancer patients who were, um, much less enthusiastic about their surgeries. My day of surgery, which was just a lumpectomy, was emotionally trying, and I was sickened by the video. Maybe I’ll write about all of that someday.
      The next refers to a Stage 4 BC patient named Lisa Bonchek Adams who has used social media to tell the side of the BC story that is not wrapped in pink ribbons, the one mainstream media completely ignores in their quest to be positive at all costs and not mess with the Pink message.
      Two op-eds were written about her by a husband and wife team, the Kellers; Emma questioning the ethics of tweeting so much (and in some cases not enough) personal info. Bill’s piece tried to discuss the different ways of handling end of life decisions, but he failed in that he completely misrepresented Adams (he called her the typical cancer warrior, when she has made it very clear she rejects battle metaphors, thus proving he did not do his homework or research before writing), and put her choices and action down in an effort to advocate for the way his relative made choices. He claims he was trying to say that there is no right way to end or prolong a life, but he really failed to effectively communicate that, which is odd, he used to be the Exec Editor for the NYTImes, so one would expect better writing.
      I cannot link you to the wife’s piece, The Guardian removed it, but if you scroll up in this comments section to But Doctor I Hate Pink and click her name it can take you to her blog, and I think she found a link to a copy and posted on her blog. His is: http://www.nytimes.com/2014/01/13/opinion/keller-heroic-measures.html?_r=0.
      It is maybe worth it to read the op-eds, and the comments, but it is also worth it to read the reactions that are out there too. Slate, The Atlantic, NPR, even another op-ed writer for NYTimes wrote interesting criticisms of this. Some of these, and others are linked on a blog called journeying beyond breast cancer, so start there. http://journeyingbeyondbreastcancer.com/, (the past few posts of hers contain these links, which is why I send a link to the whole blog rather than a certain post).
      That is sort of a rough idea of what happened, but I am by no means an expert on this event. I am not as engaged as some of the other wonderful bloggers who’ve liked and commented here. Check out Nancy’s Point & Renn ( click on their names in comments) and in the likes click on the knot logo for Telling Knots–they have bigger, more well read blogs and more effectively talk about this event. Others commenting here may have discussed it too–but as usual, I’m behind in my reading, so I can only tell you what I know right now! 🙂

      Like

      1. Thanks for the great reply and for sharing those links. I saw that video and didn’t really mind it. I thought she had a good attitude going into surgery – kind of like mine going into my most recent about 1.5 years ago – don’t be afraid to have fun at every possible opportunity. Or, at least that’s how I interpreted it. BUT, I totally get the whole “expectations” thing…like there’s actually a “wrong” way to behave when one has cancer. “F-you,” I say to such people.

        Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s