Friday, March 11, 2011

The tipping point

I am a fan of Malcom Gladwell's book The Tipping Point: How Little Things Can Make a Big Difference.  Several years ago I saw him speak at UCLA and both the book and the talk made me realize the small thinks in my life that have formed tipping points for future bigger events.  

One of those things was a walk with my friend Susan in 2005.  Susan was diagnosed with breast cancer in 2003 and the young age of 38.  We met when our oldest sons entered kindergarten together many years ago and have been friends since.  Our homes are a few blocks apart and we often walk to the beach in the mornings after taking the kids to school.  Back in 2005, we also often walked together to pick the kids up from elementary school.  On one stereotypically beautiful sunny warm Southern California day we met up on our way to pick up the kids from school.  I had just come from an appointment with my gynecologist where he had again encouraged me to consider testing for the BRCA genes.  I was deeply troubled by the potential consequences of testing in terms of handling the knowledge and the possibility that preventive surgery might be necessary so I turned to my friend for her advice.

Susan and I share many things in common: we both have two sons, similar in age and our older boys have been in the same class many years; and both of our mothers were diagnosed with breast cancer in their early 40s.  Unlike my mom, however, who is a long term survivor, Susan's mom did not survive her encounter with the disease.  When Susan was diagnosed with cancer her children were roughly three and six and her diagnosis plunged her into fear of leaving her children motherless.  She nonetheless bravely battled through surgery, chemo, and radiation and two years later was again the picture of health.

I told her about my conversation with my doctor as we walked to school and about his recommendation that I test for the BRCA genes.  I told her about my conflicting emotions about testing and asked what she would do were she me.  Her response was unequivocal.  She said she absolutely would have done genetic testing before her breast cancer diagnosis if it had been presented to her as an option.  She would have given anything to have been able to do something to prevent her disease or at least to have some forewarning of it.

"Do it." she said.

My memory of this conversation is more clear than is Susan's, perhaps because the conversation was a tipping point in my thinking I think BRCA testing.  I didn't test immediately but this conversation tipped me from "How can I do this?" to "I CAN do this!" I have handled the truth and become empowered by it and now I advocate on behalf of other women similarly situated.

I am strong:
  • I have removed my breasts to reduce my breast cancer risk; 
  • I have reconstructed by breasts to look and feel whole again; 
  • I have removed my ovaries and fallopian tubes to reduce my ovarian cancer risk; 
  • I am managing surgical menopause with humor if not always grace; 
  • I have become an outreach coordinator for FORCE, Facing Our Risk of Cancer Empowered
  • I have talked to hundreds of women in person and on the phone in an effort comfort, educate, and empower them and I have been told by some of them that I have been the tipping point in their lives;
  • I have become an author: I teamed up with Dr. Ora Gordon to write Positive Results: Making the Best Decisions When You're at High Risk for Breast or Ovarian Cancer because there was no book out there for women like me.
I would have done none of this had it not been for Susan.

Thank goodness for friends.
"Life is partly what we make it, 
and partly what it is made by the friends whom we choose." 
 ~ Tehyi Hsie

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  1. Joi,
    I have had the pleasure of knowing you via FORCE for some time now and appreciate your honest commentary and sweet countenance,always!
    The subject matter can be overwhelming but you always present a fresh,upbeat outlook.

    Thank you for being you,

  2. Thank you so much Marcia!

    My life is richer because you are in it.


  3. Great blog Joi....There is a silver lining for sure in this crappy journey we have been forced to take.

  4. Thanks so much Linee. I appreciate so much all that you do, especially in launching and sustaining the LA FORCE group. The friends I have made on this journey have been incredible.


  5. .
    Every little drop of hope and strength in an ocean of genes, realities and decisions, is a drop that may allow all to view our ocean in light, blue, calm colors with some decorating white waves, strongly but surely pave their way your blog, your book, and your rich input to women`s lives....

    May my paintings, to be seen at your link, add some droplets of strength... and bring a smile to the lives of women....

    Dr. Dorit Amikam-Benziman
    Molecular Oncologist