Friday, September 19, 2008

It's been a while...

First of all, I apologize for being totally MIA for the past few months. I don’t have a real excuse (work, toddlers, exhaustion, blah blah blah). There are topics I’ve wanted to post about, but they’re kind of heavy, and the longer I went without posting, the harder it became to sit down and share something very serious.

But in the spirit of teshuva (which, after all, means returning), I think it’s time. So here I am.

In June, I found out some news that, while not exactly a surprise, has been monumental: I carry the genetic mutation known as BRCA1 that predisposes me to breast cancer. Both my grandmother and my mother are breast cancer survivors, so I knew already that I was high risk. But knowing that the risk is almost 90% is a whole other story.

So what is an Ima to do? I’ve made the decision to have a prophylactic bilateral mastectomy, which will lower my risk of breast cancer to about 1%. Drastic, to be sure. Probably shocking to many. But for me as a parent, a no-brainer. I want to do whatever I can to make sure I’m around to be an Ima for as long as possible, and to avoid putting my kids through what I went through as a child, watching my mother battle breast cancer. I’ve lived with the threat of cancer hanging over me my entire life, and soon I will banish that threat forever. Amazing. I feel lucky.

And of course, I also feel a lot of other things: angry, weepy, self-pitying, scared, anxious, to name a few emotions that course through me on a daily basis. Right now, I’m dealing by focusing on all the complicated logistics involved in having major surgery when you have two toddlers. I haven’t yet decided exactly which surgery I’m going to have (there are various options for reconstruction), and I’m spending a lot of time talking to other women who have gone through this to learn more about their experiences and their recommendations. Though these days my femaleness sometimes feels like a ticking time bomb – BRCA1 also raises one’s risk of ovarian cancer to about 50%, so I’ll have to remove my ovaries before I’m 40 – I also feel incredibly grateful to be able to draw on the strength and support that most women offer one another so freely.

The last thing that I want to say about all this today is that I don’t at all intend to be preachy about this. Surgery is the right decision for me now, but it’s not right for everyone. Everything about this is so personal, even the decision to get tested. Before I had kids, I didn’t want to be tested because I was already under surveillance as someone high risk and wasn’t ready to consider surgical options. My sister, who is single and childless, has decided not to get tested for now. I would never tell anyone that she should get tested or, if positive, should have bilateral mastectomies. But I do think it’s important for women – especially those of us who are of Ashkenazi background, since we are 5 times more likely to carry the breast cancer genetic mutations – to know about the availability of testing, the risks a positive diagnosis carries, the options for dealing with it, and the support networks (such as FORCE) that are out there. Knowledge is power.


Maya said...

Kol Hakovod, and all the best to you! My mother, a breast cancer survivor, also opted for a double mastectomy, though they'd found her lump incredibly early. Like you, she wanted to minimize her risks,(plus, she is still estrogen positive). She's never regretted her decision for a minute. I guess I'll have to make some decisions myself, given my family history, and I appreciate your post.

A Living Nadneyda said...

May it go well, and refuah shleima u'mehira. You are courageous.

Anonymous said...

I am tremendously proud of you. Just this past week, I shared a similar struggle with a friend who lost her sister at a very young age from breast cancer; she tested negative. If she had tested positive, she would have done what you are doing.

I admire you for making a very difficult decision; I admire you even more for your stand at the front line of what would have been a battle for you and for your family. The recovery will no doubt be difficult, but the peace of mind will be worth it.

From here in cyberspace, I wish you a refuah shlema, and if there is anything that your cyberfriends can do to support you, including saying a mishebeirach for you...don't hesitate to let us know.

Anonymous said...

Hang in there, tough girl! Hope you don't mind some prayers from an agnostic Presbyterian.

p.s. I so relate to what you said in your grandparents-not-meeting-expectations blog.