Thursday, July 25, 2013

THANK YOU @FasterCures

Faster Cures.

I love everything about them and now, I'm beyond grateful for yet another act of kindness, circa July, 19, 2013.

My blog turned two.  Because I am so distracted, I didn't even SEE this post on the Faster Cures Blog.

Sorry, you are going to have to click.  I know it's my usual MO to include text from most things I reference.  I know some people aren't clickers.  I know, too, that some links I provide may not work without setting up a free account at certain sites.  Since I know the blog at Faster Cures is not one that requires a membership..... do click.

I talk about the illusion of progress and the reason why patients belong at the table across the entire continuum of care.  I even mention that there are times patients do not belong at a table.  I'll clarify.  In some cases, primarily in very early research, the information is so technical I don't feel advocates can add to the conversation until the brainiacs (saying that with the utmost respect for people who are so brilliant) work out the logistics of determining formulas that would challenge even John Nash.  I saw some early research projects when reviewing applications for PCORI.  Some of the grants sought to develop methods to better reach underserved populations and included mathematical equations that filled an entire page with letters and symbols and subscript numbers.  Developing a theorem that will achieve its intended goal and provide good data is best left to those with that skill set.  We, as advocates, can be brought in after they work out the kinks in the math.    

Beyond all of that, there is a photo in the blog.  Let me tell you a secret.  Aside from the fact I happen to love that picture of my daughter and I, the photo was from a trip we took in July 2006.  It was taken in Venice at the Hotel Danieli.  We were vacationing as a family.  The kids were all getting old enough where the logistics of planning a vacation like that might prove to be difficult in the future.

I was diagnosed on July 27, 2006.  How could I know that THIS was the picture of someone walking around with a cancerous breast?  Blissful ignorance.  In other words, little did I know my world was about to be divided in two.  Little did I know that my bright and carefree smile would no longer be the same.  Little could I know that my life would be forever changed in less than three weeks.  And in a million years, I could not fathom that my dad would be gone in one year.

And in several million years, my crystal ball could not see me HERE, four years later, baring my soul to complete strangers.  If I am to go one step further, there is no way I could have ever imagined where this blog would take me and the ways in which my life has been enriched by the relationships that could only have happened because I am HERE.

Considering everything that is happening right now, July 19th was especially bittersweet this year.  I apologize for all of my cryptic remarks.  One day, it will be appropriate for me to share, to extend my advocacy efforts beyond the needs of the cancer community.  There are gaps in other medical arenas that are shameful.  It's still not appropriate for me to bring this such a public forum.

Faster Cures.  Part of my HERE.  Part of my NOW.  Part of what I do and who I strive to be.  This surprise, in the form of a celebration of my blog's birthday, is yet one more reminder that there are many out there sending good thoughts my way and doing things, big and small, that are helping me put one foot in front of the other because the only way out, is through.

Sometimes, the act of going through can be quite difficult and filled with pain.  It is in those times, THESE times, that I am most appreciative of the support of each and every one of you.


  1. dear anne marie,

    I read that wonderful interview, and can just imagine how thrilled you were to be so honored. congratulations, and thank you for expressing the profoundly important thoughts that you articulated so well, especially about the illusion of progress - so powerful, so true!

    the beautiful photo of you and your daughter - I so understand the thoughts and feelings of "who could have ever known?". but just look how far you have come - HERE and NOW.

    I hope you can FEEL the love and good wishes and thoughts I am sending you. every, single. day.

    much love, my friend,

    Karen, XOXOXOXO

  2. I love you Karen... I really really really DO!!!



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