Wednesday, March 20, 2013

THE NEEDLE AND THE DAMAGE DONE, PART 2

It's been an entire year since I wrote this post.  The title is the same as it appeared on March 20, 2012.  Six years ago today, I officially broke up with chemotherapy.  The needle was yanked, the damage was done and I officially exited the building.

Today, my mom is walking into that very same building for her first set of scans since being diagnosed with metastatic disease.  The irony is almost cruel.  Actually, her diagnosis IS cruel.

When I read my words from precisely one year ago, I can see so much has changed.  My question, "Is this the true Five Year Marker?" is now a question, that if asked to me, will quite possibly be met with the iciest glare I can possibly muster. While I'm on a rant, don't talk to me about early detection either.  As I read another part of this entry, I am reminded of my first comment.... the first commenter who commented a second time and then again, and is now my friend. Barb.
Barb Bristow.  She's metastatic, too.  She was blissfully ignorant a year ago.  It was our way of joking about chemobrain. Today?  I'm guessing we are both acutely aware.

I was getting ready to go see Pink Ribbons Inc.  I was anxious to meet whomever would be speaking on behalf of Breast Cancer Action at the movie.  Little did I know it would be me.  Fast forward to today.  Breast Cancer Action is one of the plaintiffs in the case against Myriad Labs that will be heard by the Supreme Court in just a few weeks.  April 15th.  I'm prepared to speak out in support of BCA's position on gene patents.  Anyone or any organization that stands in the way of research is going down.  Or, I'm going to be bruised and bloody in my efforts.  I've had enough.

I saw Luana for the very first time as she accepted an award at from the Avon Foundation to help fund her passion, You Can Thrive.  I am still anchored but some of the beaches I've been thrown upon?  Washington DC and the advocacy summit where I met Lori and CJ and learned how to be a fearless friend.  Washington DC where I also met Kwanele and found a sister in South Africa who is a global activist and a fierce advocate.  Acceptance as a DoD consumer reviewer, the Faster Cures conference in NYC, San Antonio where I met so many people and have gotten support from every corner of the globe.  In a couple of weeks, I will be at the American Association for Cancer Research Annual Meeting.  I'm in the midst of preparing a poster presentation for the meeting.  I'm repeating things that everyone has already heard a zillion times or more.

Today...... it's about mom.  The needle and the damage done....  And my own scanxiety.... and everything else that goes along with what has changed in one year.  There is much talk of disruptive innovation.  I'm being disruptive.  Righteous anger at the lack of progress......  Noise......  I'll be doing it all.  Because that's what daughter's do.  At least that's what THIS daughter does......

Here's the replay

March 20, 2012, One Year Ago Today......


Today is a day of BIG reflection.  Five years ago, precisely FIVE YEARS AGO, those machines were turned off for the last time and the needle was yanked from my arm, the last of the poison having dripped into my veins.. let's hope, FOREVER. There was no celebration, no confetti falling, no balloons soaring toward the sky.  It was quiet congratulations from the nurses.  It was a big hug from my oncologist and it was a ride to an empty home in the back seat of a car driven by a stranger.  Somehow, I expected more.


Even though I knew I still had additional surgeries, the worst of it was behind me.  The word chemobrain was not even part of my vocabulary.  I kid you not.  The word didn't exist.  Yet.  And now?  It's become the springboard for everything.

Today is the Fifth Anniversary of The Day I Broke Up With Chemotherapy (and is THIS the TRUE "five year marker?"). Another noteworthy event?  Today, exactly eight months ago (plus one day), I hit the publish button.  I suppose I can now say I am a blogger?  I've been at this consistently for eight months.  I began to write "my silly little blog" and it went live in the final moments of July 19.  Before the month was over, I saw a comment.  What a thrill.  I love reading comments, but that first comment.....I remember jumping around joyfully.  Seeing the number of readers climb a bit higher--also very thrilling.  And then, to see countries and one day realize, "Hey, the blog has been read on every continent except Antarctica," definitely another rush.

I just recently shared the story of this blog with some of the people who staff the volunteer program that sent me the angel who helped keep me focused.  I explained how the blog has turned into the force that guides me.  The blog took on a life of its own.  My fingers hit the keys and my body is along for the ride.  Sometimes with my brain.  Other times, not so much. One of the people I was with asked if I saw the movie, Julie and Julia.  I had no less than four people tell me I HAD to watch the movie when they heard I was writing and thinking about designing a blog.... I think I watched it in preparation for the NEXT person.  I didn't want to keep saying, "No..."  As I watched it, the only thing I could relate to?  The first comment.  From her mother.  Telling her to give it up.  Except in my case, my mom hasn't ever told me to give it up. She's encouraged me.  The movie mom comment?  Definitely funnier.  The success of her blog?  A Meryl Streep Movie???? Dream on, AM..... All similarities end at the word "blog."

At this point, I'm waiting for someone to catch on, for someone to call me on my shit, so to speak, someone to finally realize: I'm not REALLY a blogger, I'm just someone who set out on an adventure.  Not altogether that adventurous either because this adventure is from the comfort and safety of my home.... I'm waiting for someone to say, "What the hell are you doing? WHO CARES about your insurance problems or your need to embarrass your kids by aging backwards or how you feel about skewed statistics or anything ELSE for that matter???"  

Low expectations.  Me?  I had NO expectations.  Mostly, I began writing to amuse myself.  I crack myself up even though it's often pointed out my jokes are not funny.  I never thought more than a handful of others might find this (me) entertaining.  And a handful became lots and thank you wherever you are for reading.  Many doors have opened because of the blog.  Not get rich and famous doors, just doors.  And on the other side of every door is a new experience.

I hear the voice of a tall, dark stranger whispering, "It's all part of a great journey."  The tall, dark stranger is actually my best buddy but hey, I like to let my mind wander.  Tall Dark Stranger just sounds far more intriguing, don't you think?  I'm having a grand old time.  I love that this blog was the conduit that opened up the world of advocacy and activism.  I love that a VOLUNTEER helped me get going here, and by here, I mean in the blogosphere.  Having Anna Kotopoulos share her many talents with me and share them from her heart was my pay it forward catalyst.

Stepping into the world of volunteerism is the most rewarding thing I have ever done IN MY LIFE.  In the short time that I have been actively volunteering, cliche though it sounds, I have gotten so much more, exponentially more, than I have given.  I am still all over the place.  I am fine tuning my path on this great journey, a journey upon which I remain thanks in large part to the encouragement of that tall, dark stranger.  OK, O K A Y... my buddy....

Tomorrow?  Who knows.  I only learned to Be AWARE..... fully present and aware.  As the upcoming weeks unfold I will cross over the threshold of several different doorways.  Somehow, I have things happening in every direction.  I am thrilled that ASCO Post published my "story" in their March 15th edition.  Tomorrow, I will be staffing a table for Army of Women table at the opening night reception for the Avon Foundation Breast Cancer Forum.  I will be at the plenary session the following afternoon to hear Dr. Susan Love.  Later that evening, I am attending a lecture presentation at MSK.  The week after, I will get to see Pink Ribbons, Inc. and will meet whomever will be speaking for Breast Cancer Action at the screening.

Still waters run deep and that's a part of who I am.  Anchored.  But the waves?  Those waves are A Thrill.  And, there are new waves on the horizon and I'm hopping on.  Every. Single. Wave.  Until I am tossed on to the beach, that ONE special beach....My beach.  The beach where I belong.  I'll know it when it happens.  Of that, I am certain.

(AND A BIG OLD PS.... TO SAY THAT I TOTALLY STOLE THE TITLE OF THIS ENTRY FROM A TWITTER PAL.  WE APPARENTLY ENJOY SOME OF THE SAME MUSIC.)

4 comments:

  1. dear annemarie,

    oh, my - what a ride it's been for you! and look where it's taken you - and us, countless others who have joined you, from all over the world. countless men and woman who feel they have a voice through your advocacy and activism - and many, many who found their own voices and joined in to stregthen, enhance and share the stories that have resulted in waves and waves of changes in the BC landscape. i think you have stayed true to your mission to jump on EVERY wave and ride it with passion.

    i think about how your baptism by fire is now so plugged into what your mom is going through - what if, what if - must swirl in both your minds. i hope that this seemingly meant-to-beness, that your mom has the most amazing advocate and daughter on the planet to help see her through every step of the way, gives both of you a deep sense of feeling so fortunate, even in the face of having to endure what you so hoped would never rear it's ugly head. i will be "BELIEVING" with every fiber in my being that the two of you and the BIG, BIG love you share will leave you both triumphant and dancing the happy dance - both of you dancing, living, and loving life for many, many years ahead.

    love to you both, XOXOXOXO

    karen, TC

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    1. Dearest Karen,

      Once again your eloquence and your observations have taken my breath away. I hope that I've played some small part in helping others find their own voice to help guide their own treatment. I've come to truly understand the profound commencement address Steve Jobs delivered at Stanford, especially when he talked about connecting the dots in our lives **backwards** ..... I'm doing lots of backward connecting these days.

      As always, I send tons of love to you and to Hugh...

      xoxox

      AnneMarie

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  2. Yes, my dear, you really are a blogger! We don't need a book deal.or a Meryl S movie to prove that. You prove that, every time you hit "publish."

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    1. OH how you make me smile, Nancy...

      You encourage me in ways I can't describe....

      AND.... my baby niece (my sister's adopted daughter who is the LOVE of my life) just turned six. She told her favorite uncle she wants a pig for her birthday. My sister just moved and she has horses on the property. I **think** she is zoned for farm use and I've been appointed with the task of finding the pet. I thought of you!!!

      xox

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