A Time For Grieving & Remembrance

I have been trying to puzzle out exactly what is at the core of how I feel this year about Breast Cancer Awareness Month. For weeks now, I have been perplexed, knowing that the explanations I’ve come up with so far have fallen short.

Last night, I decided to put on my clinician hat and attempt to identify my symptoms: I feel utterly stymied, crabby at times for no apparent reason, and my penchant for righteous snark seems to be broken. My sense of parody, my ability to turn some of the errant nonsense of Pink Month on its ear, has all but fled. I avoid the news in all forms. I cannot bear to go to the store and see shelves full of pink merchandise. I have no patience with even the most innocuous forms of symbolism. I’m not depressed per se, but I’m not myself. Yes, I need a vacation, and I’m on vacation from work, but beyond the stresses and strains of everyday life, I feel like I need a vacation from breast cancer awareness itself.

Today, the obvious finally hit me. Underneath it all, what I have been feeling is grief — grief over the friends I have known and lost to breast cancer; dread for friends who are newly diagnosed; heartache for friends who are dealing with the dirty bomb of metastatic disease, which is turning their lives upside down and inside out; sorrow for friends who have lost friends and spouses and siblings and parents and children to this disease. I am awash in this tsunami, and I realize I cannot get past it unless I go through it. But it hurts to acknowledge how deeply I am in its grip, how it makes me feel sick in my soul and weary in my body, right down to my toes. I just want to lay down and cry. Or stand up and keen.

A ‘moment of silence’ at a breast cancer gathering is not enough. One day out of thirty-one to acknowledge metastatic breast cancer is not enough. The unspoken suffering of any one of us, the forgotten death of any one of us, hurts all of us. We are not statistics. And ribbons seem inadequate to shoulder the burden of our losses.

The color of my grief is not pink.

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This entry was written by Kathi, posted on Wednesday, October 05, 2011 at 02:10 pm, filed under Attitude, Fighting the Pink Peril, Life & Mortality, Metastastatic Breast Cancer, Nitty Gritty and tagged , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

19 Responses to “A Time For Grieving & Remembrance”

  1. I agree AA!
    All this pink just reminds me of how many people are not getting the help they need and they are certainly not receiving any benefit from “racing for anything”. It is shameful what we, as a society, allow to happen in our world….I suppose the million dollar question is how far do we need to be pushed to finally do something about it.
    Your loyal follower,
    The Cancer Assassin

  2. Thanks, Laura. I just tried to leave a comment on your blog, too, but Blogger has some new cookie issue that is making all my comments disappear. One of the things that has struck me, too, is how the pinkwashing not only runs roughshod over the realities of breast cancer, but of all cancers. We don’t see the store shelves overwhelmed in products disguised in other ribbon colors to represent other cancers. That tells you something about how out-of-whack the whole awareness movement is.

    Thanks for your loyalty!! xxxooo

  3. In the beginning of our cancer journey, many of us, eager to latch on to a supportive community that knows what we’re going through, do the pink runs. As this hideous disease claims more of ourselves and those we love, pink becomes meaningless. We’re so beyond awareness! A month, a day, a color is almost offensive, but if there were no pink acknowledgement at all, how would we feel?

    The existing raise money, find a cure thing is so agonizingly slow and flawed. We’ve all banged our drums loudly, & Komen knows our issues and why we feel the way we do. What if as a next step we remember our common ground, a cure, and work together to find more effective ways to change the existing pink system?

    To that end, I’ve invited Leslie Aun, National Director of Marketing & Communication for Komen to address some of the breast cancer communities’ anger and frustrations this coming week, Oct 9th, on my blog. Perhaps I’m naive, but I’m hoping we can both let go of defending our positions long enough to brainstorm a more transparent and accountable fundraising and search for the cure mechanism. We want the same thing! Let’s stop being critics, rechannel our anger and see if we can’t bring about a more constructive system.

    Kathi, earlier in the summer I think I said I’d think about a next step for us as a community. No one has ever invited Komen to the table to talk about our grievances. Let’s come together this week on BRENDA’S BLOG and “dip our collective toes in the water.” I’m hoping this will lead to more in-depth conversations. This could be a unique opportunity for the breast cancer community as a whole. We have nothing to lose except the cure. I hope you’ll help me spread the word.

    Thank you,

  4. Thanks, Chandra. I’ll have to check out your article. I’ve been wanting to write a post on soy as well, because there is so much contradictory info from research studies out there.

    Bren, I did see your message about this on FB. I tried to communicate with Leslie on Twitter, but she only responded indirectly. It’s always worth trying to open up some communication lines. I myself am skeptical about how much Komen is prepared to respond or change their corporate model. They’ve got a lot invested in their current corporate sponsorships & image, but that doesn’t mean it’s not worth trying. And no matter how they respond, it certainly won’t stop all of us from leveling our justifiable critiques at how they operate & what their priorities are. There are still a lot of women and survivors who just don’t get it about the pink thing though. There are a lot of folks who believe the ‘end justifies the means.’

    I’m just so bloody tired of it all this year. It has all just plum wore me out.

  5. Right on. Corporate America seldom ceases to disappoint, but this is my first Pinktober (my diagnosis was in January 2011), so I’m seeing things in an entirely different light. BTW, I wanted to alert you to the article I did for my employer re: soy and breast cancer. We had to postpone it from the September issue of the magazine for which I write; I just realized it now looks as if we are part of the Wide Wave of Pink. Oops. I put the link to the article in the website box in this “leave a reply” section. I much value your parsing of All Things Research and so wanted you to see my first such production.

  6. Kathi,
    This is a beautiful post. I think you’re exactly right; you are grieving. At times there is profound sadness that just takes over isn’t there? I totally relate to what you are saying and you’re so right; we are not statistics and ribbons are just not enough. Hugs to you.

  7. I hear you Kathi, I hear you. Rach xxxx

  8. Kathi: I’m going to try leaving a link in this text box, since I’m not sure you got the previous one. The article on soy and breast cancer is at http://www.aocs.org/soy. Having reviewed everything, I’m fully satisfied that whole soy foods are just fine and may even be protective. But that’s my decision for myself; every woman has to review the studies and make her own decision.

  9. Kathi, this is such a profound statement. “A ‘moment of silence’ at a breast cancer gathering is not enough. One day out of thirty-one to acknowledge metastatic breast cancer is not enough. The unspoken suffering of any one of us, the forgotten death of any one of us, hurts all of us. We are not statistics. And ribbons seem inadequate to shoulder the burden of our losses. The color of my grief is not pink.” I feel the weight of not only of what the ribbon has come to represent but also the grief. So much of it. Too much of it. Thank you for writing. – Gayle

  10. Thanks, Rach. Thanks, Gayle. I know you both understand exactly how I feel and where I’m coming from. I had all sorts of other posts planned for this month, this year, and I’m not up to any of them for the moment. The ubiquity of pink and all the nonsense that goes with it makes a mockery of how I’m feeling right now. And that by itself says a great deal about what’s wrong with the pinksploitation approach to awareness, doesn’t it?

  11. This spoke volumes to me, Kathi, especially this year. I can totally relate.

    Love, jody

  12. Kathi, the first October after I was diagnosed, I was unprepared for pink October. I picked up a magazine and read an ad that said “I lost my breast, but opened my heart.” My response was shock and pain. I was diagnosed with cancer, and the treatment left me with lymphedema and other issues. I’ve tried to explain why the fact that even my toilet paper comes with a pink (self satisfied, labeling, and constraining) ribbon infuriates me.

    I’ll have to defer to the great essay by Barbara Ehrenreicht on this one:
    From: Welcome to Cancerland–


    No, this is not my sisterhood. For me at least, breast cancer will never be a source of identity or pride. As my dying correspondent Gerri wrote: “IT IS NOT O.K.!” What it is, along with cancer generally or any slow and painful way of dying, is an abomination, and, to the extent that it’s manmade, also a crime. This is the one great truth that I bring out of the breast-cancer experience, which did not, I can now report, make me prettier or stronger, more feminine or spiritual — only more deeply angry. What sustained me through the “treatments” is a purifying rage, a resolve, framed in the sleepless nights of chemotherapy, to see the last polluter, along with, say, the last smug health insurance operative, strangled with the last pink ribbon. Cancer or no cancer, I will not live that long of course. But I know this much right now for sure: I will not go into that last good night with a teddy bear tucked under my arm.

  13. Ah, Judy, nothing like Barbara E’s perspective to cut to the chase. I look forward to seeing the documentary she just took part in — here’s the trailer for it.


  14. I have no words…the color of my grief is ever changing but never pink. Thank you darling girl for saying so much of what we cannot put into words. <3

  15. Kathi,

    This is a beautiful posting, and you captured exactly how I feel, too. I’m simply overwhelmed this year, so much so, that I’ve also been avoiding watching the news and going to stores. Those joyful pink ribbons do not capture the depth of grief over all the suffering.

  16. Kathi, Such honest and heartfelt thoughts. Several months ago I had my final reconstruction procedures. My current PS did a great job. He was such a treasure to find in the darkness of the second diagnosis.

    I am where the rest of you are. I’m tired of the pink. And I usually focus on how thankful I am. But even we lucky ones grieve our loses. With all the advances, the cures are pretty much the same devastation. These past two years were long, including an infection and reexpansion process, second cancer, and my first plastic surgeon was not good. But some days I look at what a great job my new surgeon did, but what my heart feels is, “I want my old breasts back.” No matter how you dress these things up, they will always feel cold. No warmth runs through them. They will never feel human. They will never again feel and respond to my husband’s touch. Oh, how I miss that.

    Some days the grief comes out of nowhere and washes over me like a tsunami. As time has passed the loss is less. But it is a brokenness in my heart that hides behind the implant. And as many survivors have said…many friends think that the trauma ends with the last surgery.

    Am I thankful for my cancer(s) being found early?…very thankful. Do I grieve because I fought to save my breasts and lost both?…..every day

  17. I love the image you made of the pink ribbon and woman inside. How do we cope? By supporting each other in the effort to get the word out that breast cancer KILLS. A moment of silence is indeed not enough.

  18. It is always a painful experience when a loved one passes away. We all have our own ways of grieving. Coping with it is quite the challenging part. I thought I’d share http://www.deathletters.org as it might help to know there are people who are going through the same thing.

  19. Great post, Kathi. Would love to write a more elaborate comment, but I’m (supposedly) supervising a raucous play date involving my sons, their friends, a hot Darwin day and a swimming pool. Simple, noisy pleasures which I am (for now) fortunate to be here to enjoy, and of which so many are robbed. There is so much grief in all this, isn’t there? Wishing you a lovely November.

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