Wednesday, June 29, 2011

Fair Weather Friend?

Dear The Red Dress Club,

Please accept my apologies for being a fair weather friend.  We’ve barely gotten to know one another and I’m sure it seems from your perspective that I’ve dropped you like a hot potato.  That’s not actually what happened, but I can understand why you’d feel that way.  Rather, there’s some big stuff going on in my life at the moment and I just don’t have the focus or concentration necessary to write about it – or much of anything else for that matter.

If you want some background about the “big stuff,” you can check out some of my posts from the last year.  They’re here, here, here, and here.  If you're not inclined to read them, here's the executive summary:  Last spring, in a matter of weeks, my mother died from extremely aggressive, metastatic triple negative breast cancer.  Because her sister (my aunt) also had had breast cancer (but thankfully is a survivor), my sister and I opted to pursue genetic counseling and testing last August.  Based on the age of onset for my mother and my aunt, however, neither of our gynecologists thought we would test positive for any of the BRCA gene mutations common among Ashkenazi Jews.  (Approximately 1 in 40 Ashkenazi Jews is a carrier of a BRCA mutation as compared with rates within the general population of between 1 in 500 and 1 in 800 for BRCA1 and even lower for BRCA2.)  In fact, my sister did test negative, but surprise, surprise...I'm a carrier of one of the BRCA2 "founder mutations"--6174delT to be exact--that suppresses my body's ability to fight certain types of tumors and puts my lifetime risk of developing breast cancer at about 85% (it's 12% in the general population) and my lifetime risk of developing ovarian cancer at about 27% (it's 1-2% in the general population).  It is extremely likely that I received this genetic legacy from my mother, but in some families, it is passed from the father down to the next generation--and can be carried by both sons and daughters. You can read more about these specific gene mutations here and here.

Suffice it to say that after much pondering, research and other information gathering, as well as involvement with two different BRCA support groups and a scare after a baseline MRI back in April (that turned out to be nothing), I decided to be proactive, to control what I can control, and to try to do so with some degree of grace, dignity, faith, compassion, courage and humor, while also raising awareness about these mutations and their prevalence (but not exclusivity) within the Jewish community.  Six months ago (in fact it was exactly six months ago today), I had a robotic assisted laparoscopic prophylactic hysterectomy (how's that for a mouthful?!) and three weeks from tomorrow, I'm going to do the rest--a prophylactic bilateral mastectomy (PBM) with immediate reconstruction using a micro-surgical tissue transfer from my abdomen (yes, a tummy tuck).  In BRCA-ville and among plastic surgeons this procedure is known as a DIEP, which is an acronym for the abdominal vessels that are used to provide blood flow to the transplanted tissue. I’m confident in my surgeons’ (yes, there are two of them--this one and this one) skills, abilities, and experience (they do hundreds of these each year) and hopeful that when I come out on the other side of the 10-12 hour surgery that’s scheduled for July 21, all will be well.

I look forward to reconnecting with you then, Red Dress Club—although it likely will take me a few weeks to emerge enough from the anesthesia haze to focus, concentrate and write.  In the meantime, though, I will read the posts of other TRDC-ers and will, I'm sure, be inspired by their stories and memories.  Thanks for hanging in here with me.  See you soon.

Your friend,
~ JanetheWriter.

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