Wednesday, May 4, 2011

No Awards Here

Last weekend I travelled to Washington D.C. to attend the National Breast Cancer Coalition's Advocacy Training Conference, along with over 800 other people interested in hearing more about the NBCC's bold mission to end breast cancer by 2020: "Breast Cancer Deadline 2020".

Can it be done?  Well the jury's still out on that question, but it's a start and we can't do any worse than where we already are. Click here to read  to read the NBCC's Breast Cancer Deadline 2020 publications,  including a baseline status report, their white paper on the mission, and a letter to scientists.  

This deadline represents a tangible goal to which this organization intends to be held accountable to.

In coming posts I will be sharing my reflections about the conference as well as other important information about things that we can all do to continue our efforts in helping to change the conversation about breast cancer, in order to bring about the paradigm shift that will be crucial to achieving the NBCC's goal of ending breast cancer by 2020.

So where does one start?


I was pondering this question, as I was on the train returning home and reading "Ending Breast Cancer: A Baseline Status Report".  Facts were jumping out at me and I began to feel overwhelmed. Here's a small sample.

90% of breast cancer deaths are due to metastasis. The incidence of women diagnosed with advanced breast cancer has not changed.  Rates of diagnosis of truly lethal disease have remained stable since 1975.  Mortality rates have not changed significantly. Forty thousand women and hundreds of men in the U.S. alone will die from breast cancer this year. The evidence of a mortality reduction from early detection is conflicting and still under question.  The efficacy of mammography as a screening tool remains a highly contentious issue.  Early detection is no guarantee that a later stage diagnosis can be prevented, nor that that a cancer will spread through metastasis at some later date.  Treatments to eradicate metastasis do no exist.  There is still SO much we don't know.




Lest I become too disheartened and simply fall into a heap crying "it's all too hard!" I decided to take a break from my reading, and go and hang out on Twitter for a bit.  Perhaps @BurbDoc could lighten my mood with his humorous rantings from #Suburbia.  Perhaps something like:



Suburban Physician
ACTUAL PATIENT QUOTE: "What do you mean no one prescribed quaaludes anymore?"


But it wasn't to be.  Instead I saw this:


Komen for the Cure (@komenforthecure)5/3/11 10:21 AM
CALL FOR ENTRIES: Submit your loved one to be named Komen #GlobalRace Survivor / Co-Survivor of the Year by 
5/8/11http://bit.ly/mFegAO
Blood pressure rising, the banshee scream beginning to curdle, but of course I had to click through.....

Susan G. Komen for the Cure®, the global leader in the fight against breast cancer, celebrates survivorship and we want you to as well. Please describe in 750 words or less why you or someone you know should be the 2011 Susan G. Komen Global Race for the Cure® Survivor or Co-Survivor of the Year. The Co-Survivor category recognizes someone who has gone above and beyond in support of a breast cancer survivor. To be eligible for either award and to submit a nomination, you must be a registered participant for the 2011 Komen Global Race for the Cure. Remember, 750 words or less for either category. The winning pair, to be selected by the 2011 Susan G. Komen for the Cure Executive Survivor Committee Task Force, will have demonstrated the greatest impact on their community as well as the global spirit of survival. 

************ FULL BANSHEE SCREAM ************

So Komen wants us to "celebrate survivorship" by nominating a  "2011 Susan G. Komen Global Race for the Cure® Survivor".

I guess the forty thousand women and hundreds of men who died last year of breast cancer won't be eligible.  Because they clearly didn't survive, and I guess that's an important criteria in order to receive this accolade.

Apparently the lucky recipients of this award "will have demonstrated the greatest impact on their community as well as the global spirit of survival."  I'm not really sure what all this means, but I'm wagering that "greatest impact on their community" has something to do with how much money the winners raised for Komen, and that their "global spirit of survival" at least means they are not dead.

After entertaining myself for a good few train journey miles about the blatant hilarious ridiculousness of the very notion of a "Survivor of the Year" award, I was left with the following thought.

Imagine if we acknowledged the truth about breast cancer and paid as much attention to the DEAD,  as we do to celebrating the so-called achievements of the mainstream breast cancer movement at all those pink parties and pink events, and handing out Survivor of the Year awards to those who revel in the "global spirit of survival".

Maybe, just maybe "Breast Cancer Deadline 2020" could be achieved.



A picture of me paying attention to the truth.
There were no awards handed out at this conference.
(Also this is not a product placement for Ocean Spray OJ ;) )


*********************************************************************************
Today's post is dedicated to Sarah, aka The Carcinista, who passed away yesterday of metastatic ovarian cancer at the age of 39.  If my posts read as a bit snarky, I owe it all to Sarah, whom I shall always remember as The Queen of Snark (with a Message).  On one of her last comments on my blog, she described my snark as "delicious".  No Sarah, you,  my friend,  were delicious.  Your wit, humor, sensitivity, smarts, and downright courage in the face of a terrifying beast will be remembered always.  Another shining bright light in the cancer blogosphere went out with the loss of the beautiful Sarah.  RIP.

(For more information and resources on ovarian cancer, please see this guest post by The Carcinista)

16 comments:

  1. Cheers to you, dear Anna, I believe you will continue to inspire all of us who are dealing with terminal cancers. It's no fun, I don't like it and I am daily flabbergasted by the feel good, let's raise some money approach. How about if we just gave those funds to the 1000s of patients that can't afford to pay their outrageous medical bills? Sarah's snarkiness will be missed, but I think you will continue to make her proud and help give a stronger voice to the rest of us.

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  2. I agree...stop spending money on the "cure". the money would be best spent assisting people with the medical burden of cancer and also to allay the costs of integrative interventions that support patients during conventional treatments. Oh, and one more thing...money should be available for those seeking Alternative treatments, as most are not covered by insurance.

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  3. Screaming right with ya, my love. And burning up the keyboard...

    ...and banging on my cowbell!!

    xxoo, Kathi

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  4. Your usual good. Thank you. I was also wondering last night if we need a photo gallery or roll call of the people we've lost, like the AIDS quilt or Vietnam memorial with all those names on the wall. We must bear witness.

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  5. We're going to do this thing, my friend. We're going to do this.
    love you,
    jody

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  6. I met you for the first time at NBCC, but I had seen your wonderous posts before. You tell it like it REALLY is.

    I would apply for Global Survivor and talk about my continous efforts to help people w/cancer find out about natural/support/integrative/complementary/alternative and holistic treatments but don't want to pay the entry fee. Maybe I wouldn't even win anyway.

    I have a list of "lost friends' that is over 4 pages long. So many do NOT survive, we have to speak for them.

    Our website has more wwww.annieappleseedproject.org

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  7. I met you for the first time at NBCC, but I had seen your wonderous posts before. You tell it like it REALLY is.

    I would apply for Global Survivor and talk about my continous efforts to help people w/cancer find out about natural/support/integrative/complementary/alternative and holistic treatments but don't want to pay the entry fee. Maybe I wouldn't even win anyway.

    I have a list of "lost friends' that is over 4 pages long. So many do NOT survive, we have to speak for them.

    Our website has more wwww.annieappleseedproject.org

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  8. Anna,
    First of all, thank you for attending the conference on the behalf of many. I have a feeling you were soaking it ALL in.

    I love the fact NBCC has the guts to proclaim a goal. Tangible goals are necessary. I am looking forward to your ideas for things we can all do.

    Also, I'm wondering, what exactly is a "global spirit of survival" anyway?? What if the nominated person passes away before they can accept it?? Would they still qualify??

    And was anyone sitting next to you when you let out that banshee scream??

    Finally, lovely heart-felt tribute to the Carcinista. I can't believe she did that incredible interview days ago and now she's gone. But not forgotten.

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  9. Thanks for being there and sharing your insights!

    I would like to know more about NBBC's mets specific plans. The goal is to STOP mets from happening---well between now and 2020 there are going to be a signficant number of us living with mets.

    According to NBCC's Fran Visco among other accomplishments, over the past 20 years, NBCC "made certain we could oversee how research dollars were spent by creating innovative science-based training programs for lay advocates."

    You know the absymal state of mets funding. Do the lay advocates? What will NBCC do for the 155,000 US people currently living with mets? Is that conversation changing? Are they with us?

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  10. More to come soon on my personal reflections of the conference including the mets agenda......BUT I did hear discussion on prevention of mets entirely AND halting progression of mets for those already at Stage IV. Pat Steeg and Danny Welch, noted mets researchers were quite simply rock stars in their advocacy for those living with Stage IV BC. Back soon !

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  11. Thanks for the post Anna. It was great to meet you and I'm looking forward to keeping up with you and your wonderful, honest writing style. I'm with you about the awards!

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  12. Demonstrates the greatest impact on their community as well as the global spirit of survival? Anotherwords, someone who actively raises money for them and spreads pink 'awareness', right? Global spirit of survival--what does that even mean? I for one would not want to be Komen's poster child for awareness, I'll just go to Lowe's Home Improvement centers for more pink merchandise: they have a new campaign in conjunction with Komen to sell pink geraniums, pink flags, plastic ribbon lawn ornaments (seriously), pink garden shears, and bamboo-derived pink gardening gloves. I know, I have pictures.

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  13. Anna, I LOVE your snark! I got lost in here reading, and you made me snarl and belly laugh at the same time! It was fabulous eating tapas with you.

    Elizabeth

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  14. Yes, thank you, as Nancy says, for attending on behalf of many Anna. I'm so glad this was such a positive experience for you and look forward to hearing more reflections.
    Beautiful dedication too. Best, Sarah

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  15. I heard your banshee scream - I really did! Kudos on continuing to say what needs to be said, but I really applaud your guts to even follow Komen on Twitter. Seeing their logo is enough to make me want to throw things, and I don't wish to destroy my phone, LOL.

    OK - I'm off to a "big box" store to buy some flowers for my annual Mommie's Day ritual (the planting of the flower boxes) - and I'm truly hoping that I don't run into any pink gardening stuff Tuesday22 talked about. Pray for me...

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