Tuesday, October 1, 2013


Welcome to a month of collaboration.  Of education.  Of participating.  Welcome to the future.  Our Future.


Yes, there will be plenty of critics and the only thing I can respectfully request is that everyone take a deep breath.  Step back.  Look at where we are.  Today.

And now, I'm going to channel my inner Ronald Reagan.  Are we better off today than we were forty years ago?  Anyone who has read this blog, even intermittently, knows my response.


We are moving at a snails pace during a time when everything around us is progressing at warp speed.  I won't say there haven't been gains but they are coming too slowly.  They are not meaningful enough for this impatient patient.

The press release says that three powerhouse breast cancer organizations announced they are working together in a groundbreaking collaboration to document the long term and short term physical and emotional side effects of breast cancer treatments.

I have been excited about the Health of Women study from the moment I learned about it.  I've written about it many times in advance of and since its official launch which was exactly one year ago.  One year ago, we were answering the questions.

Today and through the remainder of the month, it's up to us to ASK the questions, to question the cure, to talk about the collateral damage associated with the treatments we have received, or continue to receive or, in the case of some, will receive for the remainder of their lives.  The next module of HOW will be developed based upon OUR concerns.

I'm beginning to feel like a broken record but here goes.  Collaboration is NOT a buzzword.  It's a call to action. Collaboration requires leadership and to be an effective leader, one must not only have a clear vision, but also a willingness to understand that our differences should not stand in the way of progress.  MUST not stand in the way of progress.  I applaud the vision of Dr. Susan Love.

I applaud the willingness of those at Susan G Komen and Young Survival Coalition to join forces so that all voices may be heard.  Remember.  We are all on the same mountain.  It's not about who reaches the summit first, it's about making sure we reach that summit.  Period.

Want to chat?  Tomorrow.  Facebook first, and shortly afterwards, Twitter.  So far, we're off to a good start.  Day one is all about working together and addressing the needs of this community.  So far, I like it.


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  1. AnneMarie, I so hear you on the deep breaths and the staying calm and the remembering we're all on the same mountain. I cannot help but roll my eyes when certain organizations are mentioned. THAT itself is almost a symptom of cancer, for the patients themselves and their families — we lose our faith in people. We start with passion and hope but land on... apathy? disillusionment? realism? disgust?

    My sister's been dying of breast cancer for seven years now, culminating in current hospice/brain mets/general crappiness. I've had a lot of time to lose faith in people. What a weird battle we fight in this — speaking truth to powerful/flawed organizations while simultaneously recognizing that you can't really get anywhere without power behind you. Thanks for the reminder that we're all reaching for the same summit.

    1. My DEAR sweet Christina,

      Last week, I attended a memorial service for someone I only knew via the blog world. I can cry just seeing the beautiful picture that was at the front of the church. Over the weekend, another of my blog friends was stolen by this disease. Two little boys without their mommies. This stuff breaks my heart and I lose a little piece of myself with each death. The fact that Vanessa is not doing well tears at me in ways I can't even describe. I can't even imagine what it must be doing to you, her sister.

      Many know I am not a fan of merchandising, not a fan of profiteering off a disease that kills so many and not of fan of anyone (person or organization) who has dug their heels in and persists in defending a point of view I know is wrong. I just know that nothing has changed. Each year we do the same thing and each year, the death rates remain stagnant, the suffering continues and the community I hold closest to my heart remains buried beneath the pink hype.

      I struggled long and hard with this post. I had a hard time digesting this collaboration for the reasons you mention and more. Then, I put my faith in Dr. Love. I believe in her work and I do have faith in her leadership. I believe she is in this field for the right reasons and knowing she is at the center of this collaborative effort tipped the scale for me. We are so polarized, so divisive and with good reason.

      If she can find a way to unite the community again, and bring voice to the metastatic patients whose voices have never been at the table, I want to support that effort. I hope this is a turning point. I hope this effort will provide us with the numbers of participants needed to see change, to have the patient voice brought to the table. I hope that you will share what Vanessa has experienced and I hope that you will join the HOW study, too.

      I'm choosing hope, not the pink fluffy hyped hope, but hope for a future that can be different. It's been decades and the really important stuff hasn't changed. I want to believe this is the beginning of a new era and it will be the one that we will look back upon as the turning point, the moment in time that the scales tipped.

      I am holding you and your entire family close to my heart.

      With much love,


  2. Christina & Annemarie, you've both expressed my own reservations completely. I lost another long-time breast cancer forum friend last week myself. Pink profiteering has not materially changed the bottom line for people's lives. I want to hope that perhaps this collaboration is the start of steering a certain corporate behemoth in a better direction. But my skepticism runs deep. We'll see. In the meantime, we need longitudinal studies. We need more studies of every kind. Preaching to the choir here, I know. Fingers crossed, and I'm sharing this info. Love to you, as always, AM. xo, Kathi

  3. Hi AnnMarie, I guess we all have our reservations. I'm feeling more than a bit skeptical myself, but collaboration is sorely needed. Christina, I'm so sorry about your sister. It is hard to not lose faith isn't it? Still, we are all on that same mountain...

    I'm hoping for that turning point too. Thanks for the info AM.


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