Friday, March 22, 2013

THE COAST IS CLEAR -- TIME FOR BOLD MOVES

We can cut through the unspoken.  The fear that was the elephant in the room.....  the elevated liver enzymes are NOT a progression.  The PET scan results are in...  The bone seems to be "less active" and there is nothing on my mom's liver.

HUGE SIGH OF RELIEF.

I was on the phone with the oh so spectacular Kwanele from South Africa to share this good news and to figure out what we should do in order to shake things up GLOBALLY.  She's had her own fair share of medical limboland nonsense...... which sidetracked us from global strategizing for a brief moment.  It prompted us to add another phrase to that list of "goes with the territory" and if I hear it again I might be inclined to go to a very ugly place.

It's the sentence, when spoken by a clinician, that begins as follows:

"With YOUR History, ______________  "

Fill in the blank.  I know you get it.  I see you all nodding your heads in agreement.  CJ told me that it's not unusual for some sort of medical issue to pop up every so often.  It will never get easy, but I will follow CJ's lead and Lori's lead ...... and learn to navigate these strange and choppy waters.

Now that this is on the shelf, I can focus on some very important events that I'm excited to share.  In a few weeks, I will be attending the American Association of Cancer Research (AACR) Annual Meeting.  I was invited to participate in the survivor <---> scientist program.  This meeting draws a crowd of about 17 THOUSAND people.  There will be plenty of opportunities to connect with people who are passionate about research.  It's a bit serendipitous that the new physician in chief at MSKCC, Dr. Jose Baselga is the Program Committee Chairperson for the meeting this year.  That pretty much puts him at the top of the food chain at the meeting AND at MSKCC.

The only problem?  I have to do a poster presentation.  I selected the topic, I know where I'm going with it but the actual artsy layout.... Let's just say I'll write anything but I don't have a creative bone in my body.  I see these wonderful infographics and even the word bubbles and am fascinated by the use of the colors and the lines and the arrows and ..... My topic is already published in the program so I suppose it's okay to share.  I will be explaining how social media impacts the effectiveness of patient advocacy.  Despite the lack of words at my mom's party, I have no problem talking about any and all aspects of this.  Unfortunately, I can't speak before an empty seven foot board!  While others be jittery over the speaking to people part, I'm all about the appearance of that board, my back drop.  I hope I can do justice to the work of the bloggers and the twitterverse.

While I'm in Washington, DC, there is going to be a Rally in support of research.  There is a crisis and we are at a crossroads.  Tremendous potential for meaningful progress seems to be on the cusp of reality.  Finally.  I can't sit on the sidelines and watch.  Doing nothing feels selfish.  I seem to be saying that lots these days.  The AACR Meeting rearranged the sessions so those who wish, may participate in the rally.  Thanks to social media, everyone can participate by sending a message about the importance of science and research.

And then, there is the Supreme Court.......  oral arguments against Myriad labs are being presented on April 15th.  Breast Cancer Action is one of several plaintiffs in that lawsuit.  Myriad has made enough money.  Their stronghold is affecting research.  Enough already.  The damn patent is expiring in 2015 but this needs to be decided once and for all so that it can't happen in the future.  That's all about BRCA genes and testing for those mutations and I'm jumping into that fray, too. I'll share more when I know more.

The buzzword is COLLABORATION.  Anyone that stands in the way of working together toward a common goal must be pushed aside or climbed over.  Get on board or get left behind.

18 comments:

  1. AnneMarie, you blow me away with all you do & all you move & all you accomplish. And Woohoo for the news about your mom! I’m glad there’s no spread.

    Take care :)
    Catherine

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    1. Thanks, Catherine!

      I'm beginning to realize there's lots of running around (virtual and 3D) and maybe the chemobrain thing IS really just an overload!
      Thanks from mom... she's having comment problems.

      xoxo

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  2. It's great you are attending the upcoming AACR annual meeting. Don't worry too much about your poster. Whatever you come up with will be just fine and more. Thanks for the link about research - heading there next. And I would love to be at that rally on the steps of the Supreme Court. This issue of gene patenting just drives me crazy... I will have to settle for a blog post or two, though I have agreed to be on a media contact person list for my area, because we cannot stay quiet on this!

    Thanks for all you do, my friend. You are awesome. And I'm so glad the news about your mom was good. Huge sigh of relief here as well. Do keep us posted on your endeavors! Hugs.

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    1. My dear Nancy....

      I already told you on twitter that I am now connected to you twice and I so appreciate all of your support--huge hugs there....

      The poster? I know I'll be fine as I begin filling in the blanks! I'm so excited to be attending the meeting. I love the science which of course leads to Myriad. I'm thrilled to know you are a media contact. I've agreed to be a contact person in this area. I'm still thinking about hopping the train for DC for the day. Apparently, I love the policy part of things, too..... I suppose I just found my niche and my life is enriched in ways I couldn't even imagine--primarily because of the people connections. I cherish ours.

      xoxo

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  3. AnneMarie I am so thrilled about the news for your mom. I also agree with Nancy that you don't need to worry about your poster. I would suggest you try to find a poster that you like and visually create yours using the template of something that appeals to you. It will end up looking different anyway since whatever you have to say is yours and I think that might help you have a place to start. Meanwhile I am bursting with joy hearing great news about your Mom! Hugs are in order!

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    1. Thanks for that suggestion, Susan..... A template to follow..... I suspect my problem is going to be having too much to say!!

      Thanks mostly for caring and for supporting both me and my mom...

      Hugs to you,

      AnneMarie

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  4. I'm so glad to hear about your mom. Wonderful, wonderful news.

    On the topic of Myriad...I have mixed feelings. I have an ingrained belief that no one should be able to patent human genes. This conflicts with my fear that the inability to patent genes will halt research in the private sector. What's the impetus for companies like Myriad to do the research if there's no payout at the end of the day? With the funding cuts to public researchers, we need the private sector to go forward.

    It's unfortunate that there's no compromise on the table that would allow biotech firms to make a reasonable return providing this essential service.

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    1. Hey Rhonda,

      Thanks first and foremost for the thoughts about mom....

      Myriad.... I was following the case but more from the point of the zig zag from one court to the other. I agree with the whole funding thing and what would drive research if there wasn't an incentive. We are in unchartered waters with such personalized care thanks to advances in biotech. I have no good answer. I just know anything that stalls research pisses me off!

      Hugs,

      AnneMarie

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  5. You're going to be in my neck of the woods in a couple of weeks?!?!? Very exciting!! What caught my eye in your post today was the sentence "With YOUR History......" Add to this "well, you know you're at high risk for ......" I've heard both far too often in recent weeks. It's blogs like yours and Twitter and Facebook that remind me we're a huge community and don't have to face this stuff alone. So I think it's wonderful you will be here in DC, representing all of US. Your board doesn't have to be fancy, because YOU will be the star, honey. I just know it! xoxo

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    1. Oh Ellen, your words just made me smile!

      The whole thing with the presentation is in your comment. We all have somewhere to turn when we need info AND, when we are privileged enough to attend these events, it's NOT about MY agenda..... it's about what matters to the community at large.

      Thanks for that vote of confidence!

      xoxo
      AnneMarie

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  6. Dear AnneMarie:

    So glad to read the good news of your mom's condition.

    Hey, don't sweat graphics for the AACR. My specialty includes graphics, go if you need some help there, I am happy to offer my skills in assistance. You know how to reach me on Twitter, so I am not far away.

    Cheers,
    Carmen

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  7. dear annemarie,

    HOOOOORAY!!! excellent news about your mom's scan and i am so,so happy for both of you.

    don't know an iota about posters, but i do know YOU! annemarie, you are going to rock the socks off everyone who attends your part of the AACR. as i read your post, as well as the responses to the other comments, i can hear such enthusiasm and confidence and conviction in your voice. you are really going to be in your element! i am thrilled for you. i love you. i thank you.

    XOXOXOXOX,

    karen, TC


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  8. AnneMarie,

    I am so very relieved about your mom's medical news. You are going to be awesome at the conference. I love your passion, and you are right: research is not where it should be. I'm going to sign the petition, as I can't make the rally in Washington. I'm so limited in where I can go, being the single mom of a four-year-old.

    I'm there with you in spirit. I'm so proud of you!

    Beth

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    1. Beth,

      And I LOVE that the reason you are limited is because of a beautiful four year old. It really doesn't get any better than that..... Thanks for the well wishes for my mom and the vote of confidence!

      Hugs,

      AnneMarie

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  9. AnneMarie, congrats on your mom's PET scan. Good news! And you'll be awesome. As for the posters, the suggestions above about working off a template should help you a lot. If for any reason you still have trouble, don't hesitate to ask for help from someone who's good at this stuff. Chances are it'll take someone skilled in that area very little time as opposed to you agonizing over it for hours.

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    1. Thanks, Eileen!
      Yes, good news.... and yes... agonizing. I just don't want the thing to look like a 3rd grade project!!
      :)
      AnneMarie

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  10. Congratulations on the wonderful news!! You are an inspiration to many and you will be a huge success at the conference.:-

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    1. Susan,
      Thank you so very much for sharing my relief and my JOY and your kind words mean more to me than I can say!

      :)

      AnneMarie

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