Tuesday, May 1, 2012

Mocked by the Neighbors


By Anthony

I don’t know where to start. Every day I get up and I'm lost. I don’t know what to do, how to act, where to go. Life has been intolerable since Rachel passed away from breast cancer on February 6, 2012 at age 41.

One thing I do know is that my hometown’s main street is lined with pink flags in celebration of Riverview Medical Center’s annual “Paint the Town Pink” campaign.  PTTP is “a community-wide effort to raise awareness of the importance of annual mammography.” Their goals are “to encourage women in our community, aged 40 and older, to have their annual mammogram; to raise money to provide underserved women in our community; and to make a difference in the lives of women in our community.”

Riverview Medical Center is where Rachel died 84 days ago.  Despite all the money raised for mammograms and awareness over the years by PTTP, Susan G. Komen, and all the other organizations, there was nothing Riverview Medical Center, or any other doctor or medical facility in the world, could do to help Rachel.  

Last year, Rachel blogged about PTTP 2011. It was among her most insightful and popular posts.  This year PTTP 2012 is back, “bigger and pinker than ever, with a gala reception, celebrity appearances, large-scale public events, and the centerpiece of the schedule: the mass “pinking” of homes all over this side of the Garden State Pinkway.”

Are you kidding me? My neighbors are celebrating the disease that took my 41 year old wife and they're raising money for a hospital to provide awareness and tests that could do nothing to help her.  They are mocking my loss in the process. Can anyone think of anything more evil?

The amount of time, energy and resources spent on PTTP and all the other breast cancer advocacy organizations is truly staggering. And I don’t begrudge those looking to celebrate their “survival” or the “survival” of their loved ones. In 2005 and 2006 Rachel and I "Made Strides" in Central Park for the American Cancer Society. Rachel wore a pink survivor t-shirt. We bought into the hype, and didn't look behind the facade because we didn't want to know what was there.  Then everything changed when the cancer returned.

Most people touched by this disease are looking to do something, anything, to help. Believe me, we were those people once.  However, in the absence of genuine leadership, people will listen to anyone who steps up to the microphone. PTTP is at the mic in my hometown all month.  And they are making a lot of noise.

Unfortunately noise doesn't help prevent death from breast cancer. More mammograms don't lower mortality, awareness doesn't cure disease. Mammograms and awareness certainly don't help anybody dealing with advanced disease. Mammograms and awareness don't provide any comfort from my grief, and their pink flags mock me daily.  This stuff is in my face every day, and now it has a gala reception and celebrity appearances.

=====================================

What’s needed? As usual, Rachel was 100% correct - research, research, researsh.  What can you do? Change the conversation.  PTTP, Komen and all the others need to fund more research.  Rachel's Blogging Community friends have been great supporters.  Sarah Horton provides inspiration.  Gayle Sulik provides leadership: They know what to do. Follow them.

29 comments:

  1. Anthony, I can't imagine the salt that must be rubbed on your very raw wounds right now with this Pink Fest. We will do what we can to honor Rach, to honor you, and all of the women we lost too soon by reminding people what we really need for the cure: real research and real cures.

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  2. Anthony,
    I'm so sorry. It must be awful for you to watch this and have it shoved in your face every day. Speak out if and when you feel up to it. We will try to keep doing the same. Rachel's voice is still being heard and continues to inspire. Never doubt that for a minute. Thanks for writing this post.

    Thinking of you and missing Rachel.

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  3. I am sorry Anthony that you are dealing with this. While well-meaning events like this are continuing the rah-rah survivor myth which has nothing to do with what is really important in the fight against breasst cancer - research to stop us dying from the disease. There is enough awareness of mammograms and the like - we need more awareness of the reality of breast cancer. Thank you for writing this post and letting people know what it is like for a loved one left behind.

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  4. Well said Anthony. You are right to be so angry. You are right to view this endless pink pressure to join in the 'bravery' and the 'fighting' and the 'surviving' party as evil. I'm sure Gayle and Sarah will have practical rage and suggestions about this, in fact Sarah is typing away behind me now, but I just wanted you to know I stand with you in your grief and rage.

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  5. Anthony - in my grief for losing my dear, dear friend Rach I have sought solace in the activities that bring me peace - gardening and walking.

    But still, I can't let this breast cancer culture become the norm.

    You and I know Rach despised this. You know she would speak about it. There's nothing meaningful about this. It perpetuates the culture where Rach is not honoured. And, to add insult to injury, in the place where she lived. This whole campaign, which is simply about encouraging women to get mammograms, and in an insurance based healthcare system that means really it's about money, and not about saving lives. How does Rach fit in to all this? She becomes the unspeakable, the dead, one of the women who 'let the side down' about survivorship, about 'losing her battle'. Rach was feisty and strong. She was unlucky. Pink wouldn't save her and it won't save me either. It's wrong, wrong, wrong.

    Thank you for your powerful post. I look forward to reading more. Love to you, Sarah

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  6. My heart goes out to you. Much love. Patty

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  7. Anthony that was an awesome post! When I saw it listed in my news feed on facebook it gave me a little start. I so miss Rachel's posts and I am glad you posted this. Not enough is being done to find out WHY so many younger and younger women are getting this horrible disease. In my town alone it seems like you cannot talk to anyone that doesn't know at least 2 people that have it. I never thought I would be at risk for getting it either but I did. Those of us with a voice need to scream from the top of the mountains as loud as we can for them to do something about this!

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  8. My heart goes out to you, Anthony.

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  9. Where the cancer community fails, the widowed community steps in. We're here... And we're pissed too.

    X

    Supa
    Widowed by kidney cancer, 2006

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  10. Anthony,
    I've never read Rachel's blog before tonight, and first, let me say, I am so sorry. Second, let me say, that to some degree, I understand your loss, but my loss was of my child's. A few years ago, I met a man in an college poetry course by the name of John Rybicki, whose wife had recently passed away from cancer. His poems shook me to my core, but I realized something as I read his book. This was the kind of stuff I NEEDED to read and surround myself with after the loss of my child. It wasn't the fluffly, "Where is God Where it Hurts" stuff, or the blah blah blah about grieving and heaven--all the things you're pretty sure you're pissed off at anyway. Rybicki relates as a spouse going through what you've gone through. If you'd be interested, I'd love to send you a copy of one of his books. Let me know and we can figure out how to get in touch past here. I wish you the best. And please...take good care of you.

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  11. Anthony, I'm so sorry. I can't imagine looking at this whole pinking of the town through your eyes right now.
    But, thank you for sharing ... your words are powerful and need to be heard. And I'm so grateful to you, to Rach, and to all the other amazing voices in this community who refuse to sit back and be quiet.

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  12. Anthony,

    I was a part of the pink parade until I realized that "pink" is a big part of the problem, THE biggest part of the problem. Rachel's voice is still being heard. I know that is of little comfort when the hole in your heart is as big as the universe.

    I feel terribly that you are going to be blinded by pink for the next month. It's time these imbeciles began asking those who have been touched FIRST hand by this dread disease if we think this stuff is a good idea.

    So hurtful. So WRONG.... PTTP may be at the mic this month in your town but BC Action, METAvivor and National Breast Cancer Coalition..... and Army of Women, too..... starting to turn ripples into waves and it's thanks to the ROCK that Rachel tossed.

    There are more of us trying to make a difference... more than you even realize... and it is in large part because of the things Rachel exposed with that unique snark of hers.

    Sending support,

    AnneMarie

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  13. Anthony,

    First of all, I want you to know that I think of you and Rachel every day. Every day. And I apologize for not reaching out to you more often.

    The irony of having to witness this PTTP nonsense so soon after losing Rachel must be unbearably galling. But I want you to know that, because of Rachel, in honor of Rachel, I've just helped METAvivor launch their own blog. It's at http://metavivor-blog.com/. And I think probably everyone who has commented here so far is trying to vote each day for METAvivor to help them gain a grant of $145,000 to help them fund research into metastatic breast cancer, from PinkWell (unfortunate name, but the funds are welcome) at http://www.pinkwell.org/voting/#applicant-96. METAvivor is well up in the running, and people can vote through May 15th. We are hoping the blog will help bring people together to focus so-called awareness where it really needs to be.

    And I will certainly keep shouting on my own blog and doing whatever I can to cut through the pink-washing. Perhaps what your town needs is a public showing of the documentary Pink Ribbons, Inc. (http://www.nfb.ca/playlist/pink_ribbons_inc/) to counteract PTTP.

    Hugs & love to you & your family,
    Kathi

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  14. Hi Anthony, it's all so frustrating, not to mention, crappy that so many think mammograms are enough. That so many believe Komen and other pink organizations are getting the work done, when they are so clearly, not achieving anything. Please know, so many of us are doing our best to keep the conversation Rachel started, going and we won't stop. Many hugs to you.

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  15. Anthony, I totally feel you on this one. I was where you are back in 1992 when my mom died of brain mets. It made me dispise pink and the "happy, happy, joy, joy" smiley face that things like PTTP become. Happy celebrations about early detection and mammograms? Were they KIDDING? But they weren't. And it really, really sucked. It still does.

    We know that BC is not pink, fun or cute. This crap kills people - very special people like Rachel and my mom, Maxine, who was only 49 when she died. I think that you, me, and the rest of the sister bloggersphere have to keep on doing what they doing and what Rachel did so well - pull back that curtin and tell the world - or anyone who will listen - how it really is. I know my circle of friends is sick of me singing that tune, but I don't care - because they can articulate WHY I'm jumping up and down as they've heard me say it so very often. Like that old shampoo commercial: I'm telling two (hundred) friends and they'll tell two more, and so on, and so on...

    Sending hugs to you today, Anthony - and encouragement to keep screaming. We hear you.

    Sending hugs to you today...

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  16. Anthony,
    I echo the sentiments of all of my fellow sisters and friends. We're sick, literally to death, of this pink culture. First of all, I'm jaded beyond words by the Komen organization's lack of leadership and solid decision-making. Second, you know the old adage, "The definition of insanity is doing the same thing over and over again and expecting different results?" Well, I'm done with Komen and pink marketing. I am, however, looking toward Dr. Susan Love's Army of Women, whose innovative research is looking for the cause and ultimately the way to PREVENT breast cancer. By looking for the cause of cervical cancer, researchers found the way to prevent it. We've spent how many billions of dollars supposedly looking for a cure? I think we should consider prevention.

    I can sympathize with life being intolerable for you since her death. Christmas, 2010, my husband, James died. It's been the most difficult thing I've ever had to come to terms with.

    Brenda

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  17. Anthony,

    I have been thinking of you & Rachel & wondering how you're doing. I'm so sorry that you have to deal with this. This past October was my first after I received my diagnosis. I was away on business & when I returned to the airport there were gigantic pink ribbons everywhere. I immediately understood where Rachel & everyone on the #bcsm chat was coming from. I wondered how those pink ribbons make a difference. I also realized that I couldn't imagine anything that is a more inadequate symbol of all I had just experienced.

    I can't imagine your pain, but I hope you gain some comfort from the knowledge that you & Rachel are on our minds & in our hearts.

    Cecily

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  18. Anthony,

    I am so sorry for your pain and for your incredible, incredible loss. And, I am sickened by the fact that you have to endure these pink parades. It is nonsense, all nonsense and such a waste of time. I am so sorry for what you are having to endure. Rachel is so missed, her voice, her ability to right things by writing. She is still making a difference today and so are you.

    I think of Rachel often. I can not imagine the depth of your grief. I am just so sorry for what you are having to go through.

    Lisa

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  19. I have known so very many women who have died from breast cancer, including my best friend. They battled valiantly and yet lost the battle. In the US, approximately 40,000 women die from it every year. And yet we continue with the celebrations of "survivorship" and plaster entire towns pink.

    My daughter has lost two husbands - one suddenly in a car accident and one slowly to thyroid cancer metastasized to his brain. I have seen the emptiness, the what-do-I-do-next and why-would-I-want-to up close and personal. I will hold you in my prayers, Anthony.

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  20. Anthony,

    I'm sorry for your great loss. I am not a breast cancer survivor but have recently "seen the light", about the hype, the pink, and am writing about it on my Cancer site at BellaOnline.com. It's happening to too many women at too young an age. I am determined to stretch forward for truth.

    With all of you in the fight for truth, God bless,
    Rann Patterson

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  21. Anthony,

    Your posting moved me so much! Even though I communicated with Rachel in the blogosphere, I came to regard her as a friend, and I think about her often. The PTTP campaign makes me sick, and I can see why you feel you're being mocked. I'm so sorry about your loss and cannot imagine your grief. Thank you for writing this poignant and necessary posting.

    Hugs,
    Beth

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  22. Hi

    I just wanted to say thank you for writing this. I have not had breast cancer, but have had lumps in my breasts and so starting reading about breast cancer. There's a great book called Poisins, Profits and Prevention which unpicks the cancer 'industry'. But thank you for your honesty, it is needed.

    Tammy (UK)

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  23. Anthony, I agree. I am a cancer survivor and have never understood the need to build a cancer survivor's park in my city. What did I do except survive and show up for the treatments? The real hero's are the researchers, doctors and scientists. Good to hear my feeling put into words.

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  25. anthony, I am completely agree. I am a Metastasis Stage IV Cancer. Mammogram?
    did not do anything to me...I got it every year before. When they found cancer was already stage IV. Sorry Like you I am Angy. We need to put the money in the cure.It is not fare that somebody has to lives this way. You are not alone my dear.

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