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Killer Genes

On Tuesday morning I sat down in my office during the still dark hours of the early morning and clicked on my computer.  I set my steaming cup of coffee on my cluttered desk and waited for the big black box that kind of controls my life to power up.  I flipped through my morning ritual of Bullet Journal, prioritizing emails and scrolling through my Facebook and Intstagram feeds. It was on those feeds that I kept seeing the same thing – Angelina Jolie had her ovaries and Fallopian tubes removed.  Of course I clicked through to the article.  Not because it was Angelina Jolie and I’m all about celebrity gossip.  No, I clicked through to see how things were going with a woman I share a lot in common with.  Angie and I share more than just killer cheek bones, we share some pretty messed up genes that want to kill us.  I needed to see how things were going for my comrade in cancer.

Angelina-Jolie-2014-OscarsAngie (I call her that because we are pals) shared a few years ago how she had undergone genetic test to see if she carried the BRAC1 or BRAC2 gene mutation that increased her chances for developing breast and ovarian cancer well above that of the general population.  When her test came back positive, she began a journey of preventative medical measures to insure that she did not die from the same cancer that killed her mother, grandmother and aunt. She first underwent a double mastectomy. Then this year, after a scare that she may have ovarian cancer, she had her ovaries and fallopian tubes removed.

I’ll be honest – I cried when I read both those articles.  I cried because one of the most beautiful women in the world carved from her body pieces and parts of herself that are the essence of being a female.  She did this so she could mother her children as long as possible, so she can see her grandchildren someday and be with her husband as long as they can be.  I cried because I too would carve those parts of me out in a second.  I would happily throw myself into early menopause and all that comes with it for as much time as possible with my family.

Angie and I both lost parents and grandparents to cancer much too early in our lives. Ovarian for my grandmother, prostate for my father. Ovarian and Prostate cancers share etiology, so it is clear that this cancer is hereditary for my family.  I am the spitting image of my father and grandmother – their genes, both good and bad, are strong.  But unlike my pal Angie, I am not independently wealthy.  I don’t have a team of doctors looking out for me. And I don’t know how to even begin to figure out a way to have the genetic test to see if I carry this gene that could rob my children of a mother the way it robbed me of my father.

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I brought my family history of aggressive cancer up to my gynecologist last year.  I asked about genetic testing.  I asked what I should be watchful for.  She brushed my concerns off like crumbs.  She acted like it was no big deal.  But to me, it is a very big deal for three reasons: Dustin, Lauren and Ben.  I have a lifetime of adventures yet to have with my husband.  I have young children, my youngest who never got to meet my father. I want to see them grow and make lives of their own.  I want the opportunity to be a grandmother for many, many years.  I want what is important to me to be important to my doctor.  But it hasn’t been – and now that we no longer have the amazing medical coverage we had before – it won’t be because I can’t even afford to make an appointment to ask about tests that cost thousands of dollars. 

So instead of having an answer I have worry. I worry that my body is turning against me.  I worry that I might miss the best part of my life because my concerns and my family history and my fear of leaving too soon aren’t attached to a famous name and face.  Because I can’t dip into my coffers of wealth and status to fund my own genetic fact finding mission.  I worry that this will be the thing that kills me and I could have done something to prevent it but no one would listen.

I am really grateful that my friend Angelina is sharing her story.  I am grateful she is making awareness important.  I am grateful she will get to spend many, many more years with her family.  I am grateful that she has been so open about something that is painful and difficult.  I am grateful for her loud voice and hope that somehow it can make mine a little louder too.

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