Tuesday, June 11, 2013

MY NIGHT WITH @RobLowe AND FRIENDS @Sloan_Kettering

Thank you.  Yesterday's post seems to have resonated with many and I can't follow all the places it's been shared on Facebook, with more comments under the shares.  Likewise, the mentions on twitter, then retweeted.  Rather than even try to follow the trail, indulge me in a blanket thank you... thank ALL of you.  Ditto thanks to the wonderful comments under the post, too.

I ran out yesterday to an event at MSKCC.  Last year, Kathy Bates addressed the crowd of survivors.  Last night, it was Rob Lowe.  Let me just say that MSK doesn't do things half way.  It's all out, or not at all and last night was no different.  I had plans to meet with a few twitter buddies (#POW to those west coasters who keep having their planned tweet ups) and while I was waiting, I bumped right into other friends.....  fellow volunteers at the hospital and a few unexpected faces from other advocacy events.

First, two speakers.  Survivors.  Both compelling.  Both witty.  One, a young woman whose story was difficult to comprehend.  She explained how she didn't know about life before and life after a cancer diagnosis.  She was BORN with cancer.  Began treatment at one month old.  ONE MONTH.  Try wrapping your brain around that concept.  I am well aware of that line in the sand in my life.  She has no such line.  No way of differentiating between life before treatment to life after treatment.  To her, it's just life.

She was followed by an equally compelling (and quite witty) gentleman who referred to himself as the eye candy before the main eye candy.  Cancer at age 15 in the 80's.  Followed by a different cancer in 2007.  Late effects.  And now, back in treatment for a recurrence of the first cancer.  Making jokes.

Dr. Jose Baselga took the stage AFTER Rob Lowe and remarked how foolish it was to be unfortunate enough to have to follow Rob Lowe at the podium.  He talked about the importance of clinical trials and discussed how his goal is to fill studies and come up with better drugs.  He's looking for the holy grail.  Save lives, extend lives and no sacrificing quality of life in the process.  He's determined and passionate.  He's one to watch.

Rob Lowe?  He spoke about the role of caregiving.  Talked about his beloved grandmother, a breast cancer patient.  He talked about his part in raising awareness and questioned the need for awareness.  Many of us were nodding our heads in agreement until he sucker punched us.  His mom, having a mother and a grandmother with breast cancer never went for screening.  His reaction to learning she was diagnosed with Stage IV Breast Cancer which took her life in less than a year? HOW?  Quite simply, for her, it seemed to come down to fear.  Watching her mother and her grandmother crippled her with fear.  She never went for screening and from the way he spoke, it seems she may have refused treatment.  "She did it on her terms."

After the speakers, several rooms were set up for mini survivorship seminars.  I was beyond thrilled.  The room I chose? No brainer.  Research findings.  I didn't realize it was about research.  The only thing I saw was Tim Ahles and Cognitive Issues.  My hero.  The man whose work validated everything I write about..... about two feet away from me talking about those things that are monumental in our lives yet can appear to be so subtle.  I hung on to his every word.  His colleagues were equally wonderful.  Victoria Blinder presented preliminary findings on employment after a breast cancer diagnosis. Her focus was on the minority and low income women.  Her goal?  Actionable findings.  Seeking things that can be fixed. Shari Goldfarb was the last speaker and her presentation on the sexual health of cancer survivors including some of the ongoing studies was quite an eye opener.  These researchers and clinicians are passionate and dedicated.

What was happening in some of the other rooms?  There was a session on nutrition which included a talk on herbs and supplements.  In another room, exercising for health and using yoga as a method of managing stress was the topic.  Skin care for post cancer was presented by the dermatology department.  Integrative medicine had a presentation focused on mind body awareness and there was a separate reception for young adult networking.  It was like a full blown science meeting.  Everything happening simultaneously.  We all had the feeling we'd like to be in three places at once.

The only thing that we knew for sure?  We need to find a better word.  Dr. Baselga eloquently explained that "surviving" doesn't capture the magnitude of life with or beyond a cancer diagnosis.  Perhaps it was best summed up by one of my awesome pals whose doctors describe her present condition as a "complete response" to her treatment for metastatic melanoma.  She is NED.  And in her words, saying I'm a survivor feels like I may be jinxing things.

It's rugged terrain in survivorville.  Being treated at a facility like MSKCC, a comprehensive cancer center that appears to have thought of everything, makes it just a bit easier to navigate.  Today, I'm filled with gratitude at the dedication and compassion and by their determination to change the world.  I'm proud to volunteer my time and I'm oh so thankful for the care I received and the care my mom continues to receive.

Thank you, MSKCC.  From the bottom of my heart and the depths of my soul.  Thank You.


  1. Lovely post. It is indeed rugged terrain, even though I'm not a survivor. Hopefully the way is paved much smoother in the future. Or, indeed, the road is closed for good.

    1. One of the people I was with last night did a talk at another location and from what I understand, she expressed her distress over that word. Your road better be paved along with lots of other people..... There will be no road closures.....

  2. I know this was about a seminar but I am still focused on Rob Lowe!

    1. Technically, it WAS all about Rob Lowe. Some of my co-conspirators were trying to find the exit they used to whisk him away!

  3. dear annemarie,

    i could hear the excitement and pride in your voice as you wrote this very informative post - so much going on, so much to be a part of, and so much to report on. you did a fabulous job! i am thrilled for both you and your mom that you both have had such excellent care at MSKCC. and such a bonus you got to see tim ahles - a hero, indeed. as for rob lowe - well, there's some icing on the cake, for sure!

    love, XOXOXOXO


    1. Karen, my love....

      I'm so glad to see you out and about. I'm on information overload. Today, I was at a presentation by the folks from Ohio State University. I must say, I am IMPRESSED! They did a fabulous job and I'll be sharing in a day or two. Have a few loose ends to tie up......



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