Tuesday, December 31, 2013

DROPPING THE BALL ON 2013

I'll bet if I took a poll, I could almost predict what might be chosen as THE stories of 2013.

Angelina, Myriad, DCIS, mammography, over treatment, unnecessary mastectomies, tamoxifen for ten.

Those are a few of the headlines that jump to mind.

What matters to me?  The stories that are buried.  The stories that never quite rose to popularity.  The stories that weren't deemed worthy of the evening news or those that were never elevated to splashy headline levels.

What might they be?  In no particular order:

  • The oncology drug shortage, ongoing.  I wrote about this when I was new to this blogging gig.  I wrote about it on at least three other occasions.  The government has guidelines in place but guidelines are not mandates.  The shortages are a problem.
  • The women in India and the cervical cancer studies.  Lauded at the annual ASCO meeting for their lifesaving research, I was, and still am, physically ill over the manner in which the studies were conducted.  These were/are women, not lab rats.  Ethics were tossed out the window and I'm accused of being an armchair activist?  Perhaps. But I don't sell out on my integrity simply because the ends somehow justifies the means.  And, I don't take kindly to anonymous comments, either.
  • The dismissive tone of an article, including a suggestion by a prominent doctor that insurance companies should refuse mastectomy unless medically indicated.  In my most humble opinion, a giant step backward in patient centered anything.
  • A missed opportunity by ABC News and Good Morning America.  The misconceptions about early detection and the over-emphasis on the importance of mammography might have been clarified.  Instead, we were pacified with the Pink Pledge.  EPIC #FAIL
  • How the hell do we silence the voices of the celebrity spokespersons?  Suzanne Somers is at the top of my list. Melissa Etheridge pissed me off, too.
  • The importance of some form of counseling before any genetic testing is entertained.  The tentacles of results are far reaching.  I recall comforting a woman whose results were positive.  She was beside herself, sobbing, "I can't tell my daughters."  Yes, there are ramifications and it's imperative that tests are done with a full understanding that the information gleaned can be a burden to some.
  • When will the NFL stop worrying about our breasts and start worrying about the brains of their players?  It's not even about the damn pink.  It's about the concussions and it's really disgraceful.
  • The word stigma should have a horrible stigma attached to it.  Lung Cancer for starters.
  • Followed immediately by mental illness and can someone tell me HOW this blog post found its way to a respected medical blog?  Seriously, where is the outrage over the lack of interest, over the insensitive remarks of a doctor, dismissing mental illness as a loss of perception of what is really terrible.
  • And why-why-why-why is metastatic disease still in the dark ages.  And why is it still completely misunderstood by so many.

I'm sure there are others but that flew beneath the radar.  This is just a quick sample of some of the things that I believe deserved far more discussion.

To all who have remained with me, thank you for staying by my side.  For choosing to be Fearless.  To those who have just joined, Welcome.  And Thank You, Too.

I'm looking forward to the new year.  There are some exciting things happening.  I hope to have all of you by my side as the next adventures unfold.

To all whose lives were cut short over these past twelve months and to some very special people who are having a really rough time right now, I'm holding all close to my heart.

For Mom.  The year may have started with horrible news, but your recent scans that show healing and no progression is the greatest way to usher in the new year.  I love you.

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5 comments:

  1. Sending you and yours all best wishes for a healthy 2014 and sending you profound thanks for being one of the voices that helped me get through a very difficult 2013!

    Happy New Year AnneMarie!

    ~Stacey

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    1. Thanks so much, Stacey! Here's to a better 2014!!

      xoxo
      AM

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  2. Here's an update on the cancer drug shortage. Not good.

    http://www.drugs.com/news/80-percent-cancer-docs-have-faced-shortages-survey-49663.html?utm_source=ddc&utm_medium=email&utm_campaign=Newsletter%20Vol%20112%20-%20December%202013

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  3. dear AnneMarie,

    2013 - I don't even know how to begin to say all that is in my mind and my heart. all I know is you were there...there to tell the stories that needed to be told, that still reverberate so hauntingly...the women in India, the broken and sad state of treatment of mental illness (which should be regarded as "disease of the brain"),

    and you were there for me...in a way that I still cannot wrap my head around...at the worst time in my life.. for which I cannot thank you enough.

    all I can do is let you know that I hold you and all that you stand for - thoughtful and insightful advocacy, your beautiful heart that beats with such compassion and love and can-do-ed-ness, even when you are exhausted and drained and lost and bewildered and you still never stop caring about others - way high up in the light of hope and wish you and all you hold dear a return of over a thousand-fold of love and fulfillment and generosity and kindness.

    much love and light to you always,

    Karen X X X X X X X O O O O O O O

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  4. Tal Givoly, MedivizorJanuary 2, 2014 at 12:28 PM

    Anne Marie, thanks for putting a spotlight on such important issues that don't get the attention they deserve and being the powerhouse that you are for what you believe in. We believe in you and what you're doing! Keep it up. For me, personally, 2013 is bitter sweet. Great stuff we've done with Medivizor. But the year ends with my 15-year-old daughter suffering congestive heart failure and a rare disease... we're now out of hospital and hoping for better news in 2014! Keep up the amazing work you are doing!

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