Friday, January 11, 2013


Today, things are going to begin to get real.  It's doctor day.  It's information day.  It's here's the plan day.  It's also, are you kidding me? day.  It's how the hell did this happen? day.  It's WHY the hell did this happen? day.  It's day one.  But really, day one was well over twenty five years ago.  Today isn't a day of being outraged over the lack of progress.  I've been on that road many times and I will be there again.  Just not today.

Today, I am still amazed at the support and the love that is coming at me and for mom from the twitter crowd and the community of bloggers.  I always knew how connected we are, but this outpouring has overwhelmed me.

Mom?  She has forwarded the blog to everyone she knows.  She tells everyone, "Don't read my story, it's not about that......  you MUST READ the comments."  You have touched me and each time I speak with her, she tells me how amazed she is at such a wonderful group of people.

Those who read regularly know that I do my best to respond to anyone who leaves a comment.  I haven't been able to keep up.  I've been behind the scenes gathering information for today's appointment.  I have had friends talk me off the ledge, doctors reaching out to give me a little guidance.  Emails, texts and notes of support, suggestions from people on twitter and every single thing is a BIG DEAL.  So again, I say thank you.  You all know who you are... and most importantly, I know and I appreciate your kindness.

I'm getting boring with all this expression of gratitude.  I know.  I NEVER expected to be in such unchartered waters.  And despite my advocacy, my activism, I feel so woefully unprepared.  I don't like the unknown but hey, I could walk out my door and get hit by that bus (yes, spoken with a growl).

Then, I am reminded how this disease is global.  And the support is global, too.  There are two activists whom I love.  They are doing things on their continents that we are trying to do here.  We have connected.  Both of them jumped to my side when they heard about this latest turn of events.  I can't even bring myself to say the words.... Instead, let me share how they have lightened things because they are each so very special.  I have spoken of them in a number of prior posts.

Grazia writes an Italian blog.  She is living in the UK.  Yesterday, she sent me a link and I was overwhelmed when I clicked through.  I wrote a blog for Dr Susan Love Research Foundation.  It was the basis for an email they sent, too.  Did I already put a copy here?  I don't remember but in any event, here it is, translated into Italian.  I love the way it looks in Italian.  I love that Grazia took the time to translate it.  And I love Grazia.  Kindness.  Concern.  Genuine.  And in the face of some of the most prominent Italian researchers.  Fearless.

And then, there is my "sister" .....  Kwanele .....  I met her in the lobby of the Hyatt at the conclusion of the NBCC summit in May.  We were together for no more than twenty minutes.  We formed a bond and because of the magic of social media, the bond has strengthened in ways I don't even know are possible to explain.

Instead, I will just say this.  When my phone rang and I heard her British accent, my heart began to soar.  We had a long enough conversation to bring tears to my eyes, to giggle like kids, to be outraged over that which must be changed, (especially in the developing countries) and in the end, my heart was singing.  The call was all about me.  And mom. When I tried to have her explain why she was referring to the day as THE best day in her life, she wouldn't elaborate. "We will talk about that next time."  She is changing South Africa.  She's a one woman force.  Fearless.

I leave you today with a video that Kwanele instructed me to find.  Whitney Houston and CeCe Winans.  The song is Count On Me and if I'm not mistaken, it's from the movie Waiting to Exhale, a movie that I happen to love.  We can all relate to the title regardless of whether or not we are familiar with the movie.  How many times do we hold our collective breath, waiting for news from someone?

I think this is for all of us.  And I love you, Kwanele, for reaching to me in New York from South Africa to make sure I know I can Count On You..... and you know You Can Count On ME.....    And as a community, a global community, we are connected and we can all count on one another.  Too Zen?  I'll be back in a New York State of Mind soon.  For now, I'm still drinking this in.  It is keeping me grounded in choppy water.

I don't know how I got to the place, I don't know WHY I'm at the place, I just know it feels right and I am here to stay. Change is coming.  Too much is at stake.  Too many are hurting.  Too many who have come to mean so much to me find themselves seeking new treatments.  And one person who IS my life.  And it's all happening at once.  Something WILL change.  Something MUST change.  Count on it.


  1. Anne Marie,
    EVERYTHING HAPPENS FOR A REASON ONLY KNOWN BY GOD. It is why you are where you are today, and for you to see how much you are loved and supported by this beautiful group of people. Full of pride for what you do.
    Love you, Mom xoxoxo

  2. When I have a song stuck in my head I call it an ear worm. I will have this ear worm all day thinking about you and your mom!(great song and great movie btw)
    You're right, we are all connected and we can all ALWAYS count on one another! Love you! Barb

  3. Since you like Italian...Ti voglio bene, AnneMarie. Tu e la tua mamma siete nei miei pensieri

  4. AnneMarie, I am just waiting to hear the news about the pathology, etc. I know the waiting is agony, but hopefully this appointment will have some answers and begin to let you and your mom have choices for treatment. Just know that we are all praying, hoping, and thinking of you and your extremely special mom as you find your path on this journey. Please don't worry about answering every thing. We all know how overloaded your mind is. It is most important for you and your mom to try to keep the stress out as you are being faced with one of the most stressful time in your lives. It's so good that you have such a special bond with your whole family and friends. Extra hugs and Love coming your way! XoXoXo - Susan

  5. dear anne marie,

    that song is sooooo touching - so right for this moment in time, yes? music can be our heart and finding a wonderful one that expresses all of what we feel, within ourselves and for those we love and care so deeply for can bring such a gift of words that go straight to our very souls. thank you, darling girl, for sharing this one with us.

    love, XOXOXOXO to you and your sweet mother,

    karen, TC

  6. All good..... Happy with the treatment plan, already KNEW we loved the doctor. I've exhaled... More later.... going to meet a friend for dinner and wear my NEW red shoes. Details to follow.... Just know I'm ok and MOST importantly, Mom is okay! xoxoxo

  7. AnneMarie, I'm glad you guys finally have a plan. It must have come as such a relief. I love your red shoes, love you and send lots of love to your Mom.

    I don't share Anonymous' belief that everything happens for a reason planned by a deity, but I do believe in the amazing human capacity for love and kindness. If I have anything to say about it, you and your mom will be constantly surrounded by it.

    Love, Acacia

  8. "Don't give in...Love won't let us fall..."

    What a great song! Music the universal language...I thank your friend, it's perfect!

    Sending love and hugs to you, your mom & sister.
    I do believe in the power of prayer, and you're all in mine, as are the others. Xoxoxo

  9. "And the support is global, too" *

    This is so true. I'm just reading your posts again and I'm not quite sure the dealings - just that I hear you loud and clear also.

  10. Hi AnneMarie, we both write about change, and it's absolute existence. I am thinking of you all the time and hoping that the plans set forth are good for your mom and you. We have to stay on top of things, we just do. But you seem to do so in a positive way, a real leader and sincere advocate. Peace and hugs,


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