Thursday, June 14, 2012

------------IT WAS THE BEST OF TIMES ---------- IT WAS ***THE WORST*** OF TIMES

Last night, I had the absolute pleasure of being an invited to attend at a Survivorship Celebration at Memorial Sloan Kettering Cancer Center in NYC.  I'm not a fan of that word, but I can't say enough about how wonderful it was to listen to each of those who spoke about their personal experiences.  The key note speaker was Kathy Bates and she began by stating, "What gets said at MSK, stays at MSK."  She was brilliant and funny and incorrigible (by her own admission).  She was inspiring and many of us were in tears listening to her share her story.

Before Kathy took the stage, Dr. Laura Liberman spoke.  This is a video of her from another presentation she gave at MSK. She's very funny.  She's warm.  She's smart.  Last night, she was wearing a spectacular hat.  Watch the video.  It's her favorite hat and as such, it makes an appearance in the video.  It's called The Butterfly Hat.  I know that will mean something to at least one person who reads this blog.

Last night, she was singing my favorite song.  Lots of her conversation was about her cognitive issues.  She brought the house down when she was exiting the stage.  It was about her "craft" and on that stage, in front of all sorts of luminaries, she had to explain... CRAFT?  What the hell is craft?  She didn't attempt to disguise her words..... She just blurted it out.....

"Can't Remember A Fucking Thing."

The real highlight of my night was the reception afterward.  I met someone with whom I've been tweeting and talking for months.  The real world meet-ups?  Nothing is more heartwarming than hugging someone in the 3D world.  This was ever so special last night and it was even more special when I was introduced to HER friend..... another participant in the Visible Ink program.  We chatted with Laura who could not have been more gracious and kind and genuine.  Such a special evening.

Until...... It became the tale of two cities.  New York and Los Angeles.  

The bottom fell out as I was driving home.  My phone chirped and I reached over to glance at the text message from our friend, Kathi.  "Dr. Love has leukemia."  I was positively destroyed to read those words.  Suddenly, people who have made some rather obnoxious cracks about Dr. Love (including her unimpressive research) over the past week are sending thoughts and support her way?  There seem to be sparks flying in the blog world and on twitter and quite frankly, I have little patience for any of it.  Lines are being drawn in the sand all over the place and I'll repeat, I have no patience for any of it.  Unrealistic expectations, low blows, personal affronts..... "my opinion is better than yours" .....  I'm so done with this portion of the bullshit.

I don't like the word survivor.  Others do.  I don't like the word warrior.  My friend who died in January referred to me as a warrior in a text message she sent to me just months before her cancer metastasized. I softened my stance on the word out of respect and love for her.  I can't erase the text messages as they are my last connection to her.  She was trying to boost my morale during an exceptionally horrible time in my life.  I was her warrior.  

I refuse to embrace The Ribbon but I don't belittle those who do.  I just hope that people are smart about how they choose to throw money at the ribbon.  I hope I can shine a light where there was darkness.  And still, I see people taking jabs at others.  And then, I see others aligning themselves with the side they feel will emerge at the top of the heap when the dust settles.

Trust me.  There is about to be a pink implosion and it's right beneath the surface.  I refuse to participate.  I will continue to speak my mind.  I will speak my own truth.  I will respect others.  And frankly, those lines in the sand are beginning to feel a bit cliquish.  I'm reminded of something I heard many years ago.  "Women do such a disservice to each other."  How can we ever accomplish anything if we continue this need to determine who is highest on the food chain.  What the hell difference does it make?  Aren't we all striving for the same goal?

If these words are making you uncomfortable, then it's likely you have a stick in your hand OR, you are feeling as frustrated and upset by all of this as I am.  If you have no clue what the hell I am talking about, you are following your own truth.  And to you I say, be you.

Me?  I was riding high and then I came crashing down.  That is classically my dad.  "Life turns on a dime, Annie."  And to that I say, "Yes, Dad.  I know.  You taught me well."  And you also taught me to be true to myself and stand by my beliefs. I shall.  More on that in the days ahead.....
Totally unrelated and completely off topic.....If anyone is interested in some sound, EVIDENCE based information,  MSKCC has a newly designed website.  Included on the website are podcasts that are linked to iTunes.  Two recent events with information relevant to recent discussions are linked here:

I scanned through Podcast #2 on this list.  It's called Mother-Daughter Conversations about Breast Cancer and it was released this past March.  In other words, the information isn't outdated.  Every speaker I listened to was nothing short of stellar.  It's a long podcast but if you are interested in evidence based medicine and not the opinions being bantered about based upon "early indications in small studies," it's worthy of your time.  In addition to the discussion about sporadic, familial and genetic breast cancer, Dr. Mark Robson walks us through the role of diet, exercise, drinking, smoking, birth control pills and soy intake as it pertains to breast cancer "prevention."  I don't believe he used that word because a GOOD doctor will not mislead a patient.  You might be surprised at what he has to say.  He doesn't hypothesize.  He simply states what is KNOWN.  I like that.

As for this second recommendation?  I was in the auditorium as this podcast was being taped.  Dr. Larry Norton is discussing Advances Toward the Cure and Prevention of Breast Cancer.  His presentation was just a couple of months ago and I love his style.

I haven't had the opportunity to go through some of the other podcasts but these two are wonderful.  I think it behooves each of us to remember that regardless of all of the static and the hype, we need to fine tune the channel so we can HEAR what is being said by those whom I believe to be among the finest doctors and medical professionals in the world.

I love my news feeds.  I love reading the early studies so I can stay ahead of the curve and discuss what may be right around the corner when I'm with my doctors but mostly, I rely upon what is proven.  Speculation has no place in evidence based medicine.


  1. AnneMarie,

    Excellent post, and I've always admired how you speak from the heart. I do think the breast cancer community can be divisive -- those for pink, those against pink, etc. Sometimes I just don't want to think about it. Breast cancer is breast cancer.

    Like you, I'm uncomfortable with the words "survivor" and "warrior." I don't know what to call myself these days. So far I've settled on the word "thriver," although based on the panic attack I'm currently having, I don't feel I'm thriving very well.

    I've been setting up appointments to see my oncologist et al, as well as having a "routine" blood test for my primary care physician. The problem is, as you well know, once you've been punched by cancer, nothing is routine anymore.

    And the news of Dr. Love is so sad. I was shocked and pray that she lives through this. Damn cancer.

    Thank you, again, for this posting. It speaks to the heart.

  2. Girl, this post took me from rapt attention about your evening at MSKCC to laughter at CRAFT to revisited sadness about Dr Love to curiosity about the "mean girls" BS to nodding my head in agreement that your dad did indeed teach you right! Please, please continue to speak your mind, my friend!

  3. How incredible that you got to attend this star-studded event! I wish I could have been even a fly on the wall; I am so in need of opportunities to laugh my head off. I, too, was devastated by Dr. Love's latest news. What next? I thought it would end when Dr. Marissa Weiss of got breast cancer. But no. The disease continues to ravage, oblivious to the pink efforts some make to make a statement. You are so right: once you are punched by cancer, nothing can be called routine again. Ever. Thanks for your outrage. Keep writing! xx

  4. A thoughtful, informative, straight-from-the-heart post. Your dad was exactly right - Life turns on a dime. None of us knows when the next phone call, email, text, tweet will push us right to the ground.

    And you are remarking on what I like to call the "andness" of life. Your wonderful, devastating day is a perfect example.

  5. I don't know how I missed all of these comments! I have this thing about responding to comments even if the responses aren't read. I'm trying to remember what the hell I did on Friday?? CRAFT.....

    Kathy Bates used the words "sucker punched in the gut" more than once so Beth and Jan.... those words jumped right out of your comments at me. I think every single person in the audience nodded at those words. We were like a bunch of "bobble heads" ... we all get it...

    Nancy..... I want you to know again CRAFT... I know I began to leave a comment on your blog with the photo of that STUPID ad. I saw the ad in a magazine I was looking at last week when I was in a salon. The "Italian version" has four girls in the photo..... It almost resembles an orgy (not that I have any knowledge of this but I would imagine it to be lots of intertwined limbs.....) I am going to put both photos in a blog post.....

    Lois.... I LOVE that description... the "andness" of life. AND.... so true-about being pushed to the ground.

    Thanks to all of you for taking the time to share your thoughts with me!


  6. What a day, my friend!!! Oy...

    Oh, I love CRAFT!!

    When I think about Susan Love, I remember when we both lived in the same part of Boston, at the time when the Boston Women's Health Collective was constantly revising their book, Our Bodies, Ourselves. This was the atmosphere then, a time of change and women's activism, when Dr. Love was a young surgeon, just getting her breast program started at Faulkner, when we had mutual friends, when she was just starting the revolution in breast cancer treatment and awareness that became her amazing book, even as I and many other women were working on many other women's healthcare issues. It was an amazing time to be a woman, a feminist, an activist in Boston. I can't even find words after hearing about her leukemia. All the fear and anguish of my own experience just sticks in my throat. I just wish her the very best, while I add her to an already long list of friends and friends of friends that I hold in my heart.

    Including you, dear AM.

    1. Kathi,
      I hold you close to my heart, too. As I stare at the bruises on my arms and desperately ignore the pain in my back.... I'm being a big ol DRAMA QUEEN... but... that's part of the landscape of our lives post cancer, isn't it????

      Hugs and love...

  7. I don't do survivor either...I just don't like labels and don't like it being slapped on with a dx. I'm just a person who had bc. That being said, to each his own...if others feel they define the word, that is fine.

    Thinking of Dr. Love.

    1. Jen....

      Think of you often and wondered how you must have felt on father's day, too. I know you don't do labels but I have to tell you, I admire you for being the essence of selfless.



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