The Clock Stops Here...

Sunday, May 18, 2008

My Pink Princesses

This whole coming out of the Breast Cancer closet is new for me. When I wrote the blog "Breast Assured", I knew hearing that I was a 12 year bc survivor, was news to many. I did so in reaction to hearing about another late stage bc, misdiagnosed, because her doctors were "watching it". (If you didn't read it, kindly do your self a service and reference back to it, March 28th). I was honored when my friend Susan, this years Breast Cancer Alliance Chairman, asked me to speak about what I wrote, at a breakfast kick off meeting at her home. I am so proud to have made the decision to become more involved with this amazing organization that raised and donated $1.4 million dollars to research and outreach last year. And so, my journey continues, in a new direction.

My "girls trip", is special, not just because I am spending it with women from all over the country that I adore, but because of how I met them...Being diagnosed with bc at a young age, was a lonely, life changing experience. I went to a support group offered through my Radiology group and was the only woman under 65. It was my first and last visit. I was never a why me? person...(really, why not me? or you)? But, I did want to know, why not more, like me? Four years later, when my paternal aunt was diagnosed with ovarian cancer, I decided to see a Genetics Counselor, and be tested for a BrCa mutation. Of the four females in my family who tested, I was the only one who was positive for a mutation. (Later, my aunt was tested to correlate my mutation to hers, which was of course, positive). Everyone else's risk was now no greater than the general population. My news, (though not completely shocking since I already had a bout with bc), was no less devastating. I never felt more alone, in my life.

Flash forward, 9 months later, when I stumbled across an Internet support group, called FORCE, (Facing our Risk of Cancer Empowered). Force was founded by it's Executive Director, Sue Friedman, as a support and information network for women at high risk of developing breast and ovarian cancer. It was such a WOW! moment for me. I am ever grateful to Sue, for creating this amazing website. For the first time, I was not alone. There were 100's of Me's, not just around the country, but around the world! In the 8 years that followed, I have bonded, helped and sought help from my Force sisters, checking in daily. (Yet another shining example of how the Internet has transformed our lives).

The Third Annual Force Conference, ended yesterday. We were 470 women strong! Some of the foremost authorities in breast and ovarian cancer in the fields of research, oncology and surgery spoke. There is always so much to learn, (even if I am at the pool most of the time). There have been some incredible advances in treatment and reconstruction and knowledge to be gleaned from long term studies.

This year, for me the highlight was meeting three beautiful, young, single women, all BeCa positive, who bravely and brilliantly have used their gifts in advocacy, writing and film making, to share their stories; Lindsay Avner, who founded Bright Pink, an online support group for young women, Jessica Queller, who recently published, "Pretty is What Changes", her memoir documenting her journey leading up to her decision to do a prophylactic mastectomy and Joanna Rudnick, who's incredible film, "In the Family", will air on PBS on October 7th. Such guts and talent!!! I am awed and inspired by them.

I look back on those dark lonely days now and my heart skips a beat, knowing that no one will have to dance alone in those shadows, ever again. To the Pink Princesses, Sue, Lindsay, Jessica and Joanna, I deeply thank you.

Health and Happiness to my family, Force sisters and wonderful friends, who fill my world with joy.

xox,
Dd

9 comments:

  1. Once again Diva Deb I will forever be grateful for your kindness and support when I needed it most. Finding you on the FORCE message board 3 yrs ago was a blessing. I am deeply honored that you were there to hold my hand and walk me thru the maze of the decision making processes I had to face and to hear your voice on the phone when I returned to my room from Recovery...the best medicine and pain killer anyone would want and need! and....I hadn't even met you yet! NOW my "breast" friend for life...your glam and gorgeousness just enlightens everyone around you!
    Forever your FORCE sister, Mayde

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  2. Well now I am crying! Mayds, I love you so much!!! How lucky am I to have you in my life???
    Your friendship is a treasured gift.

    xox, always,
    Debbi

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  3. Debbi,
    You are amazing. Please email me at Lindsay@BeBrightPink dot org so I can get you connected with the NYC girls. Can't wait for you to meet them and I will see you in NYC :) xoxoxoox

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  4. Oh Lindsay!
    I am so happy to hear from you...
    I will email you and look forward to seeing you again in NY.

    xox,
    Dd

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  5. Debbi,
    I am just so blessed to have found FORCE 2 years ago and equally fortunate to have found such beautiful sisters like you. Sisters I never had,,,and it truly felt like the real thing this past weekend in Tampa. You and all the wonderful women I met have made this possible. I appreciate all the special moments we shared,,, from the drinks at the poolside, dinner at Berns, the quiet talks of your BC experiences, your genuine concerns for myself with all this surveillance crap, our common bond with Ruth O. to even the sneak peak you gave me in the shuttle bus!! LOL. Miss you already and hope we get to do it again soon!!

    Love & Hugs,
    Lisa

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  6. do I count as sister too Lisa?
    Mal

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  7. Of course, Mal,,,you are my sister too, my FIRST real FORCE sister. It was YOU that made the real difference in me, just over one year ago when I made the leap and discovered what Dobbs Ferry was really all about. I simply could NOT have done this without your encouragement and empowering knowledge. Thank you for this gift of friendship. I may never be a "breast" friend but will ALWAYS be a true friend at heart.

    Much love & hugs,
    Lisa

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  8. Thanks for sharing. You are an inspiration to women.

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  9. Thank you so much. Sisterhood is a beautiful thing...You would do the same, I am certain!!!

    xox,
    Dd

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