Thursday, November 7, 2013

GOING FORWARD - #P4C2013 AND EPIC BEGINNINGS

There is something so different and so unique about the Partnering for Cures annual meeting.  I was invited to attend last year's meeting.  It was before San Antonio, before AACR and it was before I really had a grasp on the importance of evidence based anything.  I only knew that the word collaboration was used so many times, I felt the need to turn it into a drinking game.  Virtually.

This year's buzz was about data.  That seems to be the theme of the year, perhaps the decade.  The answers lie in the data.  The data needs to flow in both directions and somewhere in that paradigm, the data is coming from us to those in the science community.  Ergo, the data really is flowing through us.  We must be a part of the process.

Dr. Love, someone for whom I've had the utmost respect and admiration for many years was in attendance.  She closed the meeting but hold that thought for just a moment.  Before that epic event and yes, it was truly epic, she was the disruptive voice of the patient in some of the sessions and she was tweeting like a champ.  She has been at the forefront, speaking out about the need to understand the cause of breast cancer for as long as we can recall.  Now, she crossed the line and she is one of us.

Having had her own cancer diagnosis made her just a little more vocal, a little more disruptive and at many times, had me cheering (silently) when she did what she does best.  Question the status quo.  Don't say it's about the patients if there aren't patients speaking for themselves.

There was such great energy flowing through the Grand Hyatt in NYC.  The Milken Institute and the entire staff at Faster Cures deserve major props for assembling such an exemplary group of people for the panel presentations.  It's hard NOT to feel hopeful, even when I did (again silently) groan at some comments that I found to be a bit condescending.  OK.  One comment.  In one session.  By one panelist.  And the use of the phrase "tyranny of hope" during a discussion about the importance of patient participation.  Groan.  Groan.  If the premise is collaboration, I can tell you, that was a poor choice of words.  It may be floating in the twitter verse.  I groaned with my fingers.

I liked Susan Love's word choice.  Cooperation.  It's more reflective of what must happen.  To some, that may be semantics, but to me, it makes sense.  Cooperation trumps collaboration.  Plus, I was able to put down my virtual shot glass before I might have needed to be carried out of the place.

At the conclusion of the meeting, were four powerful presentations to punctuate the Time Equals Lives initiative.  I know there will be videos of all of them and each one will be worth your time.  They were riveting and I am sure this new segment will be a prominent part of next year's meeting.  I am simply not sure how they will top this year's speakers.  One thing I do know, Jack Andraka will have to clear his calendar because his attendance will be mandatory.

For this audience, the chat that occurred last, is the chat that is of most interest.  The collaboration (and there goes my shot glass....) between DSLRF and Komen has raised more than one eyebrow.  It raised mine.  I wondered how this would play to an impatient and disenfranchised population.  In the spirit of "we need to do something differently," I put my faith in Dr. Love and offered my support from the very beginning.  We've been doing the same thing year in and year out and nothing has changed.  She is the chief visionary officer of the foundation that bears her name.  I'm following a brilliant woman with a vision.

When I heard she would be taking the stage with Nancy Brinker, again, that eyebrow.  And then, Tuesday happened.  I walked into the ballroom where the lunch plenary was being held.  Since my final session was right next door, I arrived before the crowd.  Normally, I'm weaving between tables looking for an empty seat anywhere, tripping over camera equipment or knocking something over with an oversized bag holding notes and every conceivable electronic device known to mankind.

The luxury of an empty room and my choice of table location was foreign territory.  I staked out a good spot and sent text messages to the people I would be joining for lunch.  Table 29.  Just a few tables away, I saw a face that I recognized. Remember my blog about the whole impulse control thing?  Well, my impulse took control again on Tuesday.  Act, then think.  I set my bag on a chair and I walked toward the familiar face.  Within seconds, I was standing beside Nancy Brinker.  Yes, THAT Nancy Brinker.

I have been very vocal about Komen and I have, on a number of occasions, expressed my frustration, indeed, my irritation, over what I saw as an unwillingness on their part to change with the times.  To shift away from awareness, to redivide the financial pie.  On Tuesday, however, I found myself walking toward that table with one purpose in mind.  An olive branch.  A face to face encounter.  An expression of thanks.  I have no idea who has taken up residence in my previously shy body, but despite my sometimes strongly worded posts, all I'll say is this:  It's easy on paper.  It's easy when my fingers fly across a keyboard out into the unseen, the unknown.  It's quite another, to do it in real life.  And yet.....

Suddenly, I heard myself saying, and I meant this sincerely, "I just wanted to thank you for agreeing to take the stage with Dr. Love this afternoon.  It means a lot to know you will be speaking together from the same stage."  She turned and did what we all do at science meetings.  First you glance at the face, and if the person isn't familiar, immediately, your eyes move downward toward the name tag.

I can't recall what happened next, but I think I may have said that she didn't know me, that I am part of the fractured breast cancer community and that I was looking at this moment in time as a very important first step to unite a divided community.  It might be that I simply said that in my head and I am hallucinating that entire part of the conversation.  Two solid days of hard core presentations and my brain did feel as if it were dripping from my ears.

If I am to be brutally honest, I did NOT expect to like her.  I did NOT expect her to pay any attention to me.  I fully expected to be patronized or summarily dismissed.  I recall the interviews and video blurbs all too well.  This is a woman who has been vilified both personally and as the head of the Komen.  Yes, in the spirit of complete and total honesty, and to be fully transparent, I expected to dislike everything about her.  Everything.  Except, I didn't.

She was gracious.  I think she was caught off guard and I think, in broad and general terms, when people are caught off guard, they don't have time to do anything other than be.  "We all want the same things and I think our differences are far less than they might seem."  And she would be right.  It was a brief encounter, over in less than a minute or two and I made my way back to Table 29.

The room began to fill and as our table filled, it was my turn to be caught off guard.  I looked up and standing before me was Nancy Brinker's son, Eric.  "I just wanted to thank you introducing yourself and saying those things to my mom."  I was completely taken aback.  Perhaps this was the moment I realized it is possible for things to be different, that it must start somewhere and that penetrating the bubbles between those at the top and those of us who are in the trenches so to speak, might be a good first step.  One on one, people can listen, people can hear and people realize we are all just people.

When Susan and Nancy took to the stage, no one knew what to expect.  The message was serious, the importance of setting aside differences to work together was at the forefront and it was discussed with intelligence, with humor and with honesty.  "We don't really even like each other...."  or  "I don't agree with ....."   I was so taken by the honesty, the ability to agree to disagree and the notion that it's long beyond the time to change the landscape.  Mistakes have been made but I for one, am making a conscious choice to look forward.

Komen has made a bold choice in the selection of the new CEO of their organization.  Judy Salerno comes with some serious street cred and an impeccable medical background.  She understands what must be done from a science perspective but research is only one piece of this puzzle.  There is community outreach and a tremendous need in many communities for this type of advocacy.

Digging in of heels on one side and angry flash mobs on the other is not the way to solve our problems.  This type of behavior has resulted in two things, countless pairs of destroyed shoes (and I think I've established my love of shoes so this is, for a shoe lover, a tragic event) and a poisonous anger that has stood in the way of progress.  And, as someone who is most impatient, the lack of progress is the true tragedy.

I have chosen to stop digging with my heels and with my thoughts, too.  I have chosen to step back with my favorite pair of shoes on my feet and watch for what's next.  Nancy Brinker used a telling statement.  "It has been said that when two people always agree, one of them is irrelevant.  When both people always disagree, both of them are irrelevant."  We are all being irrelevant if we continue in the insistence that someone must be right and by default, those with whom we disagree must be wrong.

As for the issue of mistakes?  Is it necessary to continue to rehash with "Yeah, but.." or are we better served by taking the higher road?  I live by a motto that I found on a plaque many months ago and this is the manner with which I will approach mistakes that are in the past.


There are many chapters in this book.  Within each chapter there are many pages.  The needs of the metastatic community are closest to my heart.  There lies the greatest urgency.  On the other end, prevention, or perhaps more appropriately labeled, interruption.  On that end, lies the needs of those for whom I have a personal and highly emotional stake.  And in between, those with rarer forms of the disease, the underserved, the uninsured, the underinsured, those in treatment who drag themselves from their beds daily to care for little ones.  And the money.  And making sure it is wisely spent.  The need to stop turning a disease into a spectacle.  Trivializing it, sexualizing it, minimizing it.

It's a big book.

Breast Cancer.

And it's time we all share in the contribution to its contents.  Together we are stronger and there is room for all of us to voice our opinions and to be respectful of those whose views may differ from our own.

This is an EPIC beginning.  I may choose to remain a skeptic, or I may choose to turn a blind eye to the past.  That choice is of far less importance and time will tell whether I chose wisely.  What matters?  I am choosing an open mind and eye toward change.  Hate for the sake of hate is not the way to fix a decades long problem.  For that matter, neither is introducing religious or political views.  Disease doesn't discriminate based upon political affiliation or religious views or lack thereof.

Change can only happen if we all make a conscious effort to change.  It's time for us to preserve our shoes.  Shoes matter. Walking in the shoes of another matters.

Plus, I'm all about the shoes and seriously, I hate seeing all of the shoes that have been destroyed over the years.


Like it?  Share it!

21 comments:

  1. After reading this, AnneMarie, I am very hopeful. We share many of the same opinions on this topic, so I will also share your attitude, take a deep breath, and keep walking forward. I hope that I'm able to help along the way, too. Thanks for the great event coverage, too - loved following along on Twitter!

    ReplyDelete
  2. Thank you AnneMarie. I am... hopeful.

    ReplyDelete
  3. This is amazing, AnneMarie! Thanks for posting. Was such a pleasure to have you again this year!

    ReplyDelete
  4. dear anne marie,

    thank you for your presence, your keen observations, and conveying so well the issues that can (and I believe will) spark new resolve and bring us new hope to be able to work together - to cooperate.

    much love and light,
    x x x x x x x o o o o o o o

    ReplyDelete
  5. Wow. You are my hero for going up and saying those words. Very well done and very well said. I want to be hopeful too - it's good to hear about this exchange. ~Catherine

    ReplyDelete
  6. AnneMarie
    You are an amazing woman and I'm proud to know you. Thank you for your spot-on commentary.

    ReplyDelete
  7. AnneMarie, I am so happy to hear this. I've been following Dr. Love's partnership with Komen and have been cautiously optimistic that she could bring the community together to work collaboratively and now, after reading this, I am certain that she can. BTW, I read Promise Me during my chemo, and it surprised me to learn that Ms. Brinker also had a bilateral mastectomy along with severe neuropathy and lymphedema afterwards. Thanks for sharing the insights into the P4C conference, it sounds amazing.

    ReplyDelete
  8. Wow AnneMarie this post is spot on. I am also so inspired by Dr.. Susan Love's wise words of collaboration. What an amazing moment with Nancy Brinker. Such a touching quote- "Walking in the shoes of another matters." It's so refreshing to think we can move forward together with optimism and hope. Thank you! Hugs and xoxo - Susan

    ReplyDelete
  9. Glad you were there, AM, to be our eyes & ears.

    ReplyDelete
  10. AM, I am in awe of you. You follow your heart and it leads you to some amazing places! Like approaching Brinker, and then having her son approach you. Amazing! You say many awesome things here, but what jumped out at me most was this: "Perhaps this was the moment I realized it is possible for things to be different. that it must start somewhere and that penetrating the bubbles between those at the top and those of us who are in the trenches so to speak, might be a good first step. One on one, people can listen, people can hear and people realize we are all just people."

    What is also impressive is that Brinker is "cooperating." Maybe she has stopped running (one can hope). Maybe this is the point in the stream when the ribbons of water unite and flow into ocean. Time will tell. I am tentatively hopeful.

    Thanks for being there!

    ReplyDelete
  11. Thank you for your thoughtful and inspiring post. I, too, believe that this is the moment for things to be different. - Judy Salerno, Komen CEO

    ReplyDelete
  12. Thank you Anne Marie for being there, describing it, and saying what you did.

    ReplyDelete
  13. Thank you AnneMarie for this post and for your extension of an olive branch. I was curious to see what this Dr.Love/Komen collaboration was about, and now I am more hopeful about it all. Digging in heels keeps us all stuck. We need to walk on in the right direction and this is a start. Thanks!

    ReplyDelete
  14. This is such a relief. Kudos to both Love and Komen for calming the troubled waters and to you for documenting and analyzing it beautifully.

    ReplyDelete
  15. WOW! Excellent writing! Incredible analogies! So impressive of you to go speak to Nancy Brinker. Wonderful!

    ReplyDelete
  16. Dear Anne Marie,
    I wanted to write a comment, but then decided to watch the video first, and having that done, I have to say, this is the most optimistic thing I've seen in decades... Looking at these two women, who are both, (whether we liked it or not) a powerful influential thought and action leaders of the BC community and research, stepping back from the passionate fight and disagreement, towards an understanding that this battle is one, that by putting aside the ego and different approaches, we will all benefit from this collaboration, and we might and probably will, reach some real breakthroughs and better, more accurate wide range of data and therefor, answers to the wide range of problems and side effects we are all dealing with, is giving me hope.
    I believe that this is an historical moment in the BC chronicles, I believe that these two women with all each one of them is resembling, sitting together on the same stage, with the word collaboration spread behind them, is a huge step for our community. I believe that it took a lot of both of them to reach there, and that keeping it real, by not posing some kind of a fake togetherness, but pointing the disagreements and the personal differentiation, and yet, collaborating for the cause, is Inspiring trust and hope.

    And to you my dear fearless honest friend Anne Marie, I think that reaching out to NB, and writing this post, knowing it might get you some cold shoulders, is as courageous as their doing the same on stage. You are one honest, fair, and standing on her own advocate. It is a great honor to have you representing me, and even more then that to call you a friend.
    Thank you so much for all you are doing.
    XO
    Efrat

    ReplyDelete
    Replies
    1. Thanks to Efrat for wording what I am too tired to writes. This was beyond amazing!! The only way to make change is by putting your differences aside and finding some way to get to the cause and the cure. I am with Efrat when I say that I am proud to call you friend but even more honored to be your sister. Thanks fr going outside your comfort zone and making the changes we need. I am there at your side, getting your back and marching in front. I of course will be rocking my pink boa, tiara and dancing!! XO

      Delete
  17. Outstanding post, AM ... and having sat next to you at Table 29, I was equally inspired by what I heard and saw. There is no change without dialogue. And who doesn't love shoes! ; ) xx

    ReplyDelete
  18. Great post AM! I'm ON BOARD!! Sure do miss you! Be sure to let me know when you come to Texas.

    ReplyDelete

Something to add? Do Share!