Tuesday, June 19, 2012

WHAT CAN YOU DO ?? OK...THEN DO IT !!

I've written about this before, in fact, a number of times but today marks an official commitment I am making.  Once a week, every week, I hope to write a post specifically about metastatic breast cancer.  I've publicly expressed my concern for the 40,000 women in this country who will die of MBC this year.  I've publicly expressed my outrage (in a controlled voice, it WAS on the radio and the last thing the station needed was some lunatic woman screaming into a microphone) at the way those with metastatic disease are ignored.  I think I said things like, "They taint the ribbon."  Or, "They destroy the illusion of success and the image of hope that ribbon is meant to portray."  OR... "They are the dirty little secret of that ribbon."

The fact is this.  THEY are women.  THEY are terminal.  THEY deserve far better than what they are getting from the breast cancer community at large.  THEY need our voices-pushing for more research dollars. Many of us in the blogging community are very vocal in our support for those who are staring down the barrel of the metastatic gun.  The flame of outrage that has been burning inside me was fueled further after the NBCC summit.  I shared a room with Lori.  She has MBC and thankfully is NED.  I met CJ who is the sole surviving founder of METAvivor.  I admittedly fell in love with both of them.

My 39 year old friend died in January.  And then Rachel.  Immediately followed by Susan.  There were other bloggers with whom I was not familiar who have also died.  I've only been blogging for eleven months.  My corner of the blog world is not altogether that large.  A few of the blogs on that blogroll are written by women with MBC.  While I would like to designate those blogs, it feels too much like I am marking them with a scarlet letter.

One of the bloggers has most recently made a choice to stop treatment.  She chose quality over quantity.  My heart broke when I read about the choice she made.  Selfish on my part.  I want her around for a good long time.  Sadly, that will not be the case.  Others who have been in dire straits in the past couple of months seem to have emerged from their personal crises, THIS time.  Scans are clean FOR THE MOMENT and hopefully, for a very long time to come.  Still others are switching up meds hoping for a good result.  All of them are waiting, like Elizabeth Edwards said, "for the research to catch up" before the disease takes over.

When I was at MSK the other night and Kathy Bates spoke about her friendship with Lynn Redgrave, I'm sure my gasp was audible.  Lynn Redgrave held Kathy up through her diagnosis and treatment.  Lynn died.  Unlike her vow in that commercial for the American Cancer Society, she DID die of breast cancer.  She wanted to die laughing with her grandchildren or eating chocolate but she REFUSED to die of breast cancer.  Unfortunately, those diagnosed with metastatic disease don't get to make that choice.  It made for a powerful commercial.  And then, it made for a commercial that still haunts me.... and one, by the way, I can't find anywhere on the internet.

Here, however, is a thread from the forums at BreastCancer.org.  It's in the section specifically for metastatic patients and it's a candid discussion that punctuates my point.  The conversation thread, from October 2007, is about how they feel neglected, invisible, ignored.  I wonder how many of them are still alive?

Metastatic Breast Cancer Network just had two prominent members die within a week of each other.  Donna blogged about this and about the need for us to step up:

"We can not propel this cause from a single blog post or a single speaking engagement......(we need) concerted effort and repeated activities from many motivated individuals to imprint even a single step..... toward awareness and funding for MBC.  Don't think about who should hear this message--just pass it along until it reaches someone who responds to our impassioned call."

I'm a motivated individual and I'm rising to the challenge.  And, I challenge each and every person who reads this blog join me.  Where there are "pink events" I will bring my MBC voice along with my Army of Women voice and my Breast Cancer Action voice, too.  I'm in it to end it.  Once and for all.  Deadline 2020.  It needs to be a reality for all of us.

We need cutting edge research like that being promoted by Dr. Susan Love and the Army of Women.  We need financial accountability and transparency demanded by Breast Cancer Action.  And, we need to make the Deadline set by NBCC a legislative priority.  

For All.  BUT.... First and foremost, for those who stand to lose the most.  How can you help?  What can you do to answer Donna's impassioned call?

If I may?  Start by simply following the advice of John Burroughs:

The smallest deed is better than the greatest intention.








4 comments:

  1. A cyber-sister of mine is currently undergoing treatment for breast cancer. She met a wonderful woman when she started chemo who immediately took her under her wing and has supported her, as only another breast cancer 'veteran' can, with practical advice & affection. This other woman recently found out she has mets. Enough is far too much.

    Love the Burroughs quote. Yes, anything we can do, any small thing, is better than doing nothing.

    Love & hugs, dear one.

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    1. Reading this breaks my heart. It serves to remind us all that too many of us will be diagnosed with distant recurrences..... One person is one too many.

      Hugs to you for all YOU do....

      xoxox

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  2. Ann Marie,

    I simply LOVE your passion and admire your determination to make a difference. Thank you for both my friend.

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    1. Thank you, Nancy for being part of my world. This is such a solid and like minded group, I find it hard to believe we WON'T see great things begin to happen. Our daughters deserve better. Our moms expected better, too. It's up to us to demand better.

      xoxox

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