Tuesday, October 16, 2012

WHAT HAPPENED IN DC STAYS IN DC


Now that I am home, my work completed, I am allowed to speak.  Over the past couple of weeks I have repeatedly alluded to having too much to do and not enough hours in which to get things done.  Here's why.  I recently had the opportunity to serve as a consumer reviewer to evaluate research applications submitted to the Breast Cancer Research Program (BCRP) sponsored by the Department of Defense.   It was such an honor to have the Dr Susan Love Research Foundation submit a nomination on my behalf and it was even more of an honor to have my application approved and even MORE of an honor to serve on a panel.

Seated alongside prominent scientists to discuss and evaluate each application was a bit daunting.  I had no idea what to expect.  Despite excellent communication and mentoring and plenty of training tools provided to me in the weeks leading up to the meeting, I would be lying if I tried to say I was remotely confident walking into that room for the very first time. Or for that matter, the second day and yes, even the final day.  The panels are assembled and the meetings are held to help determine how the $120 million appropriated by Congress for Fiscal Year 2012 will be spent on future breast cancer research.

Consumer reviewers represent the collective view of breast cancer survivors and patients, family members, and persons at risk for the disease.  As a consumer reviewer, I was able to speak for all of us.  I was able to share, from the patient's perspective, what impact any given proposal could have on US... on all of US as patients.  I was surrounded by some of the brightest research minds and it was fascinating to listen and learn from each one of them.  And, if I am to be completely honest:  Yes.I.Was.A.Nervous.Wreck.  Positively out of my league but it was exhilarating to listen and to be heard.  Patients matter.  Having a seat at the table was a privilege and I do hope I will be invited to serve again.

I saw some familiar faces but beyond that, I can't share.  People whom I've known for quite some time via social media stepped out from behind the screens.  There were hugs and there was elation at meeting in person.  And there was excitement among all of us to be participating in a small way, to help guide the future of the research.  Frankly, I'm still a bit awestruck by the enormity of what I witnessed.  Actually, I wasn't a witness... I was a participant.  Maybe dumbstruck is a better word?

Interested?  You can get more information on the Breast Cancer Research Program, including how to serve as a consumer reviewer, on the CDMRP Web site: http://cdmrp.army.mil/cwg/role.shtml.  

If you click the link, you can poke around and see what types of research has been funded in past years.  High risk, high reward, innovative, impactful....  This is not the same old, same old.  And, I didn't just show up for the meeting.  I had to review the applications ahead of time.  It's all explained in that link.  I wanted to do a good job.  I wanted to feel like I gave it my very best.  Because I want to see the day where breast cancer is no more.

Now you know why I've been a bit distracted and somewhat back-blogged.  I was reading my assigned applications and I was determined to understand and it was, at times, challenging.  I wasn't at liberty to share that I would be on an upcoming panel until after the fact.  I see so many comments on a number of posts.  I've replied to them in my head.  It bugs me to see YOUR comments and my lack of a response.  Your voices make this blog special to me.  It's about me throwing something out there for information, entertainment, support ... and it's what comes back that matters most.  

Now, I'm back...  Except I still have some odds and ends to deal with.....Must answer the jury summons before I'm arrested or something, Must get to DMV to renew my license AND MUST organize my stuff for Friday to get more enrollees in Army of Women and have many MORE join the Health of Women Study.  

MUST seize the moment in this month of pinkness.  MUST raise awareness.... MUST share the truth and that truth is not tied with a neat pink bow.  Pink is okay... Must follow the lead of those who've been at this for a long time and MUST #ReThinkPink.  

24 comments:

  1. And it was awesome to meet you!

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    1. And THAT is a big ditto!!! What a thrill.....

      xoxoxox

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  2. I can't think of a better consumer reviewer to represent breast cancer survivors and patients, family members, and persons at risk for the disease than you my friend! Thank you for being our voice! I'm very proud of you! XOXOXO Barb

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    1. Thanks, Barb....
      It was exhilarating and intimidating at the same time. Not knowing exactly what to expect until I was actually there was a big piece of it..... like anything else, no matter how many times the procedures are explained and everything is described (logistics-wise), for me, I have to experience it first hand to get those "nerves" in check. It was awesome!!

      xoxo

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  3. AnneMarie, I'm so proud of you for stepping out and up to represent us. Thank you. I hope to share a decision making table with you in the future. Take a little break this week. Be kind to yourself. Let your brain unwind!

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    1. DEB!!!
      And you will be there soon, too. I'm so thrilled that we met and connected via AOW and that our paths seem to be running right next to each other. I'm in great company..

      Take a break??? Avon Walk NYC is Friday.... I'll be in NY at a table but THAT is a ton of fun.

      xoxox

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  4. You are the perfect representative. They are brilliant to have chosen you.

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    1. Idelle...

      You always make me smile with your words. Thank you!!

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  5. I just want to say thank you! You are the poster woman for "action taking". Time and time again you amaze me by not only your words, but by what you DO. What a big undertaking this was! I'm proud to call you a friend. Big hugs. Many thanks.

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    1. Nancy!!!
      Poster woman for action taking.... That's making me laugh. Thank you for being MY friend and thank you for being one of my FIRST friends in the blog world. It seems I have so much going on at any one time and maybe that IS the upside to the chemobrain thing--that ADD thing. Embracing the fact that my mind is going places no matter WHAT I attempt to do to control it has opened up many avenues. Now, I need to harness the damn ADD and stick to a more focused path???? This experience was intense and absolutely fabulous. I hope to do it again in the future!
      MANY HUGS...

      xoxox

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  6. Awesome, AnneMarie - what a wonderful opportunity this was! I'm sure you were thorough in your reviews and provided the group with your great insight. Thank you for being such an advocate for all of us!!! xoxo

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    1. Thanks, Ellen....

      It's encourages me to read your words. It makes me more determined to stay on this path!!

      xoxo

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  7. What an awesome thing to do AnneMarie. I can really relate to being so busy as I want to be a pier reviewer and have been approached, but I have been too busy with everything. You are such an inspiration for taking the time to do this and are reminding me that I am going to have to make time for this as it is such important work. I am so impressed with everything you do and you really are a great patient advocate for breast cancer. Thank you for being such a devoted advocate. You are doing great work! XoXoXo

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    1. Susan,
      I HIGHLY recommend making the time if you can. It was so empowering and very humbling to be seated at the table, knowing the voices of the advocates are as important to the process as the voices of the scientists. Everyone is so respectful of what each brings to the discussion. I can't say enough about how privileged I feel to have served on the panel!
      Thanks so much!!
      xoxox

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  8. AnneMarie,
    Becoming a regular reader of your blog in recent months has been both enjoyable and informative. I have no doubt you represented all of us well in your efforts as a consumer reviewer. Thank you!

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    1. Lisa....
      Giant GIANT hugs!! Thank you for sharing those feelings with me. It really means so much to me!

      xoxo

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  9. dear annemarie,

    knowing you were in washington, doing for us what you did, is so thrilling! reading your post filled me with such hope, such inspiration, and the timing of it all is just fantastic! we so NEEDED that, and you should feel proud as punch that you were able to walk the walk of breast cancer advocacy and activism. i can just imagine how daunting so much of your experience was; but honey-girl, they were soooooooooooo lucky to have YOU. i hope that after you finish coming up for air, you get to feel the full impact of all the admiration and gratitude coming your way from thousands and thousands of lives you've touched with all your fine work. congratulations and thank you!!!

    love, xoxo

    karen, TC

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    1. ahhh kTC...

      I so cherish your words.... I can't even begin to tell you what it means to have you cheering me on as I continue sorting out this path. If I go back to the very beginning of this blogging experience, my goal was to "unblock" my brain and HOPE that I could validate just one other person who was struggling with this chemobrain stuff. I could never have imagined the friendships that would develop as the months went by, nor could I have even dreamed this "silly little blog" would have opened up a whole new world of possibility. Being in Washington was so far above and beyond anything I even KNEW existed. It was thrilling. So much of what has happened leaves me shaking my head in disbelief---wondering.... "how?" .... I have finally stopped questioning the hows and the whys and I just appreciate that I can and I do!

      Love to you...
      xoxox

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  10. Congratulations, AnnMarie - that is fantastic!!

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  11. AnneMarie, how incredible! I didn't even know such a thing existed. I'm so glad you were there to speak for us and I can only imagine your trepidation entering that room. I'm in awe just thinking about it. Thanks. And by the way, I'm thinking it's time for a little trip into the city. Please let me know when you have something going on there and I'll hop the train in to meet you. Would love to pick your advocacy brain (and just say hello). xoxo

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    1. Well, Stacey...

      As it turns out, I will be in the city all day on Friday for the AVON walk registration.... IF you are so inclined to head in on Friday, that's the first option.....We can talk.

      DC... oh gosh.... it was awesome and scary and exhilarating and all this other stuff rolled into one!

      xoxoxox



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  12. AnneMarie, I am so impressed! You take the bull by the horns and you get right in there, despite fatigue and ADD and nerves. I had no idea that the Dept. of Defense got input from actual BC patients to help them decide who gets grant $. Simply incredible and I am SO proud to have you represent!!!! You are seriously awesome and a true inspiration for advocacy, Thank you, thank you, thank you.
    xoxo
    Renn

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    1. Renn!!
      Thank you thank YOU for being so awesome. It's been a busy couple of weeks... add in the stolen identity thing and the fact that I MUST get to the court to answer that jury duty thing... Today, getting people to enroll in Army of Women and to join HOW Study.... very gratified!

      xoxo

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