Thursday, September 27, 2012

BACKED INTO A CORNER

Surely, everyone has seen Dirty Dancing?  There are so many reasons why I have a certain fondness for that movie and Patrick Swayze's sultry moves on the dance floor would likely be high on the list.  Higher on this list?  It reminds me of the summers we would spend in the Catskills when I was a teenager.  I can relate to certain aspects of the movie.  Bringing those memories back into focus is, I am sure, is at the top of MY list when I assess my true fondness of that movie.

Few movies spawn lines that become classic.  Dirty Dancing is one of those few.  Say it with me.  In unison.  "No one puts Baby in a corner."  Before Baby was in that corner, she was, according to her tone deaf sister, "quite the little joiner."  I suspect big sis might have been dealing with a bit of irritation.  I suspect she wanted the Bad Boy.  How positively humiliating that her little sister got The Guy.  My theory?  The sarcastic tone with the "joiner" crack was an attempt to release some of that jealousy.  Why does any of this matter.  What is its relevance and where are we going today, Miss Chemobrain?

Last year, I became a "Joiner."  Last year, I signed off on about 50 pages of disclaimers, disclosures and who knows what else so that I might be part of a clinical study.  About chemobrain.  A study that I helped to expand because I pushed my way into the office of the doctor doing the research.

The initial assessment for my eligibility was over the phone.  I spent thirty minutes with the research assistant doing tests. Word recall.  Number recall.  Back to the first word list.  How many words could I still recall after five other tests were tossed my way? My brain hurt when we were done.  Hours later, I was bitterly disappointed when I was told, "Good news, you passed."

I may have started crying when I got off the phone.  It wasn't exactly that I "passed." A more accurate assessment?  I didn't fail quite good enough to qualify for the study.  After a few days of the persistent taste of that bitter pill, I contacted the research assistant.  I was prepared to pay out of pocket for a proper neuro-cognitive evaluation.  I wanted the names of any doctors that were familiar with the specific tests they administer to evaluate the portions of the brain that seem to be compromised when one experiences what I lovingly refer to as chemobrain.  Ok... lovingly is a stretch.  The fact that the person doing the evaluation must be skilled in dealing with cancer related cognitive issues however, is positively essential.

Those who research and KNOW that chemobrain is real are also acutely aware of the fact that the "testable" things can be oh-so-subtle.  To pinpoint "issues" requires specific tests and I wanted to have my messed up brain tested once and for all. I was tired of being told it was all in my head.  Yes.  I KNEW it was in my head.  The problem?  While those around me kept telling me it was in my head, they didn't really believe it. How could they?  Words matter, folks.  On the one hand, I was being validated, "It's all in your head."  On the other hand, I was being mocked.  "It's ALL IN YOUR HEAD."  Same words.  Big difference.

I had an appointment for a private evaluation with Dr. Elizabeth Ryan at MSKCC who happens to be the doctor who is conducting the study.  It's ongoing.  No results have been published.  But, one year ago, thanks to a great meeting with Dr. Ryan, she requested a slight adjustment in the eligibility criteria.  Her slight adjustment turned me into a failure.  In other words, IN.  I was in the study.  I've never been quite so elated knowing I was a complete and utter failure.  My failure was a success.

Lo and behold, I was signing those papers, finishing up some more crazy tests and ultimately, leaving her office with CogMed software to exercise my "working memory."  One year ago, I was in the middle of the five week training session. I was re-evaluated weeks after completion and then again three months later.  Today, I have extension training which I can do twice a week.  I purchased Brain Age and a Nintendo DS.  I won't know the results of the study until it's filled, finished and ultimately the data are analyzed.  I suspect the results will be similar to the study out of Stanford that was recently published.

Yes, there are problems.  Empowering to hear.  Validated, vindicated, verified.  No, I don't think the games are helping me do anything other than get better at the games so I'll stick with the advice of the good doc.  "Focus on what you CAN do."  I know what I CAN do.

I can bitch blog and there will be plenty of that in the weeks ahead.  I'm already irritated at Guiliana Rancic.  She's using her breast cancer and leveraging her celebrity to be a spokesperson for early detection when 30% of "early detection" will go metastatic and once metastatic, chances are on the excellent side, breast cancer will be the cause of death.  The mets patients were pissed off the other day when she had this whole social media thing going on.  I got REALLY pissed off last night when I saw she is hawking a line of clothing on HSN and donating ONE PERCENT of the purchase price to a breast cancer organization.  One-freakin-percent.  Really??  REALLY???

It's bad enough when others turn breast cancer into a cause and profit on the cause.  It's a damn slap in the face when another breast cancer patient uses her celebrity and her popularity to disseminate information that isn't 100% accurate.  To jump on the breast cancer bandwagon and generate a warm and fuzzy feeling to get a few more people to purchase her clothing line on HSN so she can donate $0.70 each time a pair of $69.90 jeans is sold, I find sort of disgraceful.

Be warned.  Do it right or don't do it at all.  When you do it wrong, it's insulting and it demeans those of us who resent being a for profit commodity.  I'm not a commodity.  I'm a woman with a breast cancer diagnosis, living mostly a great life but on occasion.... with that fear OR having a PTSD moment like I had last Friday.

I hear the arguments.  Isn't donating money great as long as it's going to a worthy organization?  Yes, indeed it IS.  My gripe?  Launch the clothing line and leave breast cancer out of the equation.  THAT'S the high road.  That's the classy road. Take the profits from the clothing line and just cut a big fat check to Bright Pink and don't say a word.

Why is it necessary to go public?  Popularity?  The Limelight?  Who knows?  Who cares?  I'll tell you who cares.  Those who are being, once again, buried beneath that Bright Pink Ribbon.  Once again, an inconvenience.  Once again, ruining the whole gig... destroying the message of hope..... so instead there will be twisted stories pandered about.

Guess what?  That's NOT alright with me.  I'm Miss Anti-Congeniality.

The big question?  Who's gonna show up and make this grand announcement ala Patrick Swayze:

Nobody -- and I do mean NOBODY --- puts AnneMarie in a corner.





6 comments:

  1. I like that! "Nobody...and I do mean NOBODY...puts AnneMarie in a corner!" I am so with you!

    ReplyDelete
    Replies
    1. I smiled as I wrote those words.. Not backing down. Ever! And I know, thanks to the wonder of social media, we have global connections to try to make things right. I'm hopeful. Cautious. But hopeful.

      Delete
  2. I forgot what I wanted to say................

    Chemobrain is real and there is nothing worse than being told it's all in your head...............

    DUH!!! do you think we don't know that???

    Nobody puts AnneMarie in the corner you got that right and while you are at it, the rest will follow!!

    love Alli xx

    ReplyDelete
    Replies
    1. :)

      I wish mine could take me to Paris--Lucky LUCKY girl!!!

      xoxox

      Delete
  3. People keep trying to tell me that my chemobrain symptoms are just what happens when you get older (HELLO? Only 44!) AND that they have the same problems! Funny, I don't think I've ever seen them forget words and make lists constantly to remember deadlines and appointments. I'm even trying "visual note taking" so when I read academic theory I have a shot at remembering it.

    Sometimes I just want to hide in the corner.

    ReplyDelete
    Replies
    1. Hiding in the corner is allowed but only for a little while before we send a posse so YOU can kick ass. I just spent two days with over 30 women and EVERY ONE OF THEM "got it" with this brain shit... and every one of them deals with those comments.

      xoxox

      Delete