Wednesday, February 13, 2013

BRCA2, ripples

     Some of you have likely surmised what's been going on behind the scenes ever since we discovered my BRCA2 gene status last March. Most people, though, don't make the connection: each of my three beloved children has a 50% chance of having it, too. The same goes for my beloved brothers and my beloved sister. And if they have the mutation, their biological children have a 50% chance of having it, too; the ripple spreads thus.
     My genetic circle of six needed to get tested, and we've been working on it for nearly a year.
     This gene is nothing to sneeze at. You may recall that a woman so endowed has an 87% chance of developing breast cancer, a 67% chance of ovarian cancer, and a 20% chance of pancreatic cancer, all by the age of 50. For young women, a positive test means extreme vigilance, mammograms and MRIs as often as you buy bananas, and ovaries that get whisked away as soon as you're done birthing children. Some young women who are BRCA2 positive have their healthy breasts removed, sometimes even before nursing.
     For men the risks are not as dramatic, but still involve a 20% chance of prostate cancer and a greatly increased chance of male breast cancer. It's not good, this mutation.

     Step one is actually not medical: you start by buying life insurance. If you test positive, that shop closes: you are uninsurable for the rest of your life.
     Kevie was the first to get tested. Already working for the State Department, he is insured up the wazoo -- though his wazoo was not technically in jeopardy, to our knowledge. Out in California, to get genetic testing you just spit into a cup and they send that elixir off to a lab. Why we haven't invented that outside of California, I cannot imagine. His was our first good news: Kev is negative.
     Then came Lee, who was also set with life insurance, but seemed to need vigorous and prolonged cajoling, which I proceeded to offer. Recall, dear followers, that his wife, mother to their three daughters, died of cancer four years ago. You can see the potential ripples, can you not? After months of ineffective sisterly cajoling, I clued in my beloved nieces (who hadn't realized the implications for Lee and for themselves), and set them on their dad. He snapped into action fast, and I felt dumb for not remembering that Lee sometimes responds to vocal volume, especially in the form of a collective hue and cry. He tested negative, and we all breathed another deep sigh of relief.
     For months, El was thinking about it. El was looking into it. She and Rob started by getting more life insurance.
     My three kids, meanwhile, were all working on getting life insurance of their own. Ting and T'ai both easily jumped the various hurdles involved. Yani, meanwhile, ran into a series of extremely frustrating snags in getting life insurance, and more knots with the testing. Her whole process became a gaggle of snags and knots. It is not a good feeling to watch your 22-year-old wrestle with life insurance and health insurance companies. It's a little bit of an unfair fight.
     This fall, though, one by one, through teary, joyous phone calls, the kids shared their results. Yani: negative. Ting: negative. T'ai: negative. All right, T'ai texted his news. But I was teary and joyous.
     Do you know, followers, the odds of these happy results? Lee, Kev, T'ai, Ting, and Yani, all negative? One in...gee, I forget how to do that math. One in lots. One in so many that you begin to think something weird was up, that maybe they had made a mistake with my test. Or that there was just something weird about me. That felt strange, yes, but so much better than having someone I love, as I do these six people, share the mutation.
     We were holding a lottery ticket and each number that was called out was on our card. One more number and we would win. We had begun to feel almost certain of it.
     Last week Ellen got her call: she had tested positive for BRCA2.
     I am just so sad. I wanted to be the only one. I wanted everyone else to be safe, forever.

7 comments:

  1. Breaking heart on Valentine's Day over here. I am so sorry to hear this news for you, Ellen, and for your dear precious sister's breaking heart, too. The texture of this life we find ourselves navigating. So richly woven in joy AND heart break. All in one glorious fabric of experience. Love to all who must bear the sadness of the news.

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  2. Ohhh Paula. I don't have the right words. I am happy for the rest of your tribe, but my heart bleeds out for El. Please send her my love.

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  3. Paula, I'm so relieved and sorry at the same time. Really, I am. These are very difficult decisions to make. Best Wishes to Ellen. Glad she has you to help and support her. Lots of Love to All.

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  4. Hey hey. Thanks for your concern everyone. Alive and well and happy to be part of this mysterious fabric.

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  5. Ellen, Thanks for commenting. Now I know you are alive and well and happy and part of the Mystery. Cheers to you. Top of the morning, and all that.

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  6. Oh shit. That's not where I thought this post was going.

    But still, there are odds to beat. Having zoomed past 50, Ellen, your mammograms etc. have been good? You've had mammograms, right?

    Wish we could go for a long run and discuss.

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  7. Oh Paula and Ellen, I've just tuned in...sending healing thoughts both your ways!

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