Shechinah at #FORCE17

Last Friday afternoon, as I do each week, I texted a few friends a Shabbat shalom message: “Shabbat shalom from Orlando and #FORCE17 – annual hereditary cancer conference. 🌞”

One of them responded with this: “Shabbat shalom to you, too, in sunny Florida. Will there be a Shabbat service?”

Our conversation continued.

Me: “The place is crawling with M.O.T.s, but Friday night is reserved for “show and tell,” a different kind of ‘service’ for those facing tough decisions.”

My friend: “HaShem is found in many places and in many ways.”

Me: “She (Shechinah, the feminine divine presence of God) definitely is here. There’s something that feels very sacred about empowered women and pikuach nefesh (saving a life).”

My friend: “It will be a wonderful Shabbat, even if you are not in temple."

Me. “Indeed.”

#FORCE17 was this year’s annual hereditary cancer conference organized by FORCE: Facing Our Risk of Cancer Empowered , a grass-roots, non-profit organization devoted to providing support, research, resources, and advocacy to those affected by hereditary cancer. Approximately one in 400 people in the general population carries a BRCA mutation, significantly increasing their lifetime risk of breast and ovarian cancer (in women) and male breast cancer and prostate cancer (in men), as well as raising the likelihood for others, including pancreatic cancer and melanoma. Hereditary mutations can be transmitted from either parent to both sons and daughters. Among Ashkenazi Jews, the prevalence of BRCA mutations is 10 times greater than in the general population; approximately one in 40 individuals carries a mutation, and most are unaware of their status as carriers.

A Glimpse Into History: An Anecdote from One Family's BRCA Story

Kate, Karen's grandmother

As depicted in Joanna Rudnick’s documentary In the Family and Decoding Annie Parker, a feature film directed by Steve Bernstein and starring Helen Hunt and Samantha Morton, every BRCA family has a story.

On the Soapbox...Again!

As we reach the middle of "Pinktober," I'm grateful for the opportunity, once again, to stand atop my BRCA-awareness soapbox, this time to discuss the recent press about whether or not all Ashkenazi Jews should be tested for BRCA 1/2 mutations.

Check out my latest post over at ReformJudaism.org.

#BlogElul: To Know or Not to Know

When I lived in Los Angeles more than a decade ago, the father of one of my colleagues had breast cancer.  In light of the diagnosis, his doctors suggested that my colleague have genetic counseling and possible testing for a BRCA gene mutation.

"No, I don't want to know," she told them.  "Whatever will be will be."

By contrast, more than two years ago, on the day after this blog post about BRCA awareness went live, a different former colleague wrote to say, "I just wanted to tell you that I found your blog so inspirational."

A few weeks ago, she wrote again:  "Hey Jane.  I wanted to tell you that

my father and I met with a genetic counselor to assess my risk of getting breast cancer  My dad was tested for the BRCA gene and it ended up being negative.  Thanks so much for talking about your experiences in a public manner.  It really inspired me to check out my own health."

I responded with this:  "Plonit -- thanks so much for your message!  I'm thrilled that your dad's test was negative and that my experience prompted you to get tested.  That's exactly why I do it!  Thank you!!"

Needless to say, I'm pleased to know that my efforts to raise awareness about BRCA mutations, especially within the Ashkenazi Jewish population are meeting with some success.  I'm glad to know, too, that my friend's father tested negative for a mutation and that she and her siblings are not at any greater risk for cancer (breast, ovarian, prostate, pancreatic and melanoma) than people in the general population.

As for my friend in Los Angeles, I hope she knows that even though she's opted not to test for a known BRCA gene mutation, she (and her daughter, beginning at age 25) should be doing surveillance as though they had, in fact, tested positive.  The regimen includes a mammogram once a year and an MRI six months later, meaning that they'd be getting each mode of testing no more than once a year (so insurance will cover the costs), but also getting two chances in one calendar year to be checked, increasing the likelihood of finding disease, if any, in its earliest, most curable stage.

Whether or not individuals want to know their BRCA mutation status, it's critically important that they know and understand the risks associated with these mutations and that they use that knowledge to make decisions about testing that are right for them and their families.

For more information about hereditary breast and ovarian cancer (HBOC) syndrome or to locate a certified genetic counselor who can help your family assess its risk, check out the website of FORCE: Facing Our Risk of Cancer Empowered.

In the year ahead, may we all have access to the knowledge and resources necessary to make the best possible decisions for ourselves, our families, and our loved ones.  Amen.


Inspired by Ima on (and off) the Bima, this #BlogElul post is one in a series marking the days of the Hebrew month of Elul, which precedes the Jewish High Holidays and traditionally serves as a time of reflection and spiritual preparation for the new year. 

I Got All My Sisters With Me

Kara DiGuardio, my BRCA sister

A generation ago at this season, I attended a number of sorority semi-formals at my alma mater.  At the time, the school was heavily Greek, with nearly 20 fraternities and five sororities. Invariably, each of these spring events--no matter the sorority--closed with the DJ "spinning" Sister Sledge's "We Are Family" as all the young women, in various states of intoxication, gathered on the dance floor, linking arms and singing along as a gaggle of young men watched from the sidelines.

I was reminded of this scene last Wednesday evening at FORCE's NYC Spring Celebration 2014: Live Life Empowered at Hudson Terrace.  The organization's inaugural benefit event, which was sponsored by Quest Diagnostics, featured two of my BRCA sisters, Stacey Sager and Kara DiGuardio, in a joyful celebration of the organization that is the unequivocal voice of the hereditary breast and ovarian cancer (HBOC) community.  In addition to providing resources, education, and support to individuals and families at risk for hereditary cancer, FORCE, comprising a staff of 11 and a tremendous corps of dedicated volunteers throughout the country, advocates on our behalf within the medical, pharmaceutical, and policy arenas, helping to ensure that we don't encounter discrimination, insurance snafus, or other obstacles as we--individually and collectively--deal with the inevitable roller coaster ride that comes along with our attempts to ensure, to the extent possible, that our genetics don't dictate our destiny.

Throughout the evening, we cheered Sue Friedman, FORCE's founder, celebrated Stacey's survival of both breast and ovarian cancer, and marveled at the serendipity that propelled Kara, who shared her songs and her story, to get tested.

As regular readers of this blog know, I am one of thousands of FORCE members who will be ever grateful to the organization for its strong, supportive, knowledgeable, powerful, and empowering voice.  Most of all, I appreciate my countless FORCE sisters (and one brother, who sports a New Jersey license plate that reads "BRCA1") who are ever ready and willing--as am I--to answer questions, share experiences, recommend doctors, dry tears, commiserate, or just listen.  Help from our BRCA sisters empowers so many of us to make tough decisions, undergo surveillance and surgeries, deal with both expected and unexpected consequences, and move on in our forever-changed lives, all in the hopes that cancer won't steal us the way it already has stolen far too many of our mothers, grandmothers, sisters, aunts, and cousins.

Indeed, Sister Sledge's "We Are Family" is the perfect soundtrack for my BRCA family.  Had a DJ and a dance floor been in the room on Wednesday night, I am quite sure that as our partners, spouses, friends, and supporters stood on the sidelines and watched, we all would have been out there, linking arms and singing along with Sister Sledge:

We are family
I got all my sisters with me
We are family
Get up ev'rybody and sing

Ev'ryone can see we're together
As we walk on by
(FLY!) and we fly just like birds of a feather
I won't tell no lie
(ALL!) all of the people around us they say
Can they be that close
Just let me state for the record
We're giving love in a family dose

We are family
I got all my sisters with me
We are family
Get up ev'rybody and sing

Living life is fun and we've just begun
To get our share of the world's delights
(HIGH!) high hopes we have for the future
And our goal isnt in sight
(WE!) no we don't get depressed
Here's what we call our golden rule
Have faith in you and the things you do
You won't go wrong
This is our family Jewel

We are family
I got all my sisters with me
We are family
Get up ev'rybody and sing

Where's JanetheWriter?

Graphic:  www.facingourrisk.org

Check out my recent post over on the Union for Reform Judaism's blog.

I'd love more opportunities to tell my BRCA story to people who might benefit from the things I've learned.

For more information about hereditary breast and ovarian cancer (HBOC) syndrome, check out the FORCE website.  It's an amazing resource.  Most of all, if you think that you or your family might be at risk, ask your doctor to refer you to a genetic counselor.  They're incredible professionals and have a lot to offer. 

Good luck!

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.

Letter to My Double Helix

Dear Double Helix,

You’re probably wondering why I’m writing to you now, after 30-some years.  Yes, that’s how long it’s been since I sat in Miss Ganim’s 10th grade biology class studying your components—adenine, thymine, guanine, and cytosine—your “founders,” Watson and Crick, and the guy on whose shoulders they stood, Gregor Mendel.  Remember him?  He’s that Austrian monk who tinkered with those garden peas, eventually earning himself the title of “Father of Modern Genetics.”

Indeed, thanks to the monk’s toying with those plants, it’s clear just how I ended up with brown eyes, curly auburn-ish hair, and a gait that from behind (my mother always said) is exactly the same as my father’s.  Factor in some additional family history, the work of the human genome project (completed in 2003), and the availability of genetic testing, and it’s relatively clear (relatively being the operative word here) how I also ended up with a BRCA2 gene mutation--6174delT to be precise—that increases my lifetime risk of breast and ovarian cancer.  Needless to say, Double Helix, I’ve been thinking about you quite a bit in recent days.

I’ve also been doing and not doing lots of other things.  Here’s a short list:

1. I’ve been sharing this news with people I care about and who, I know, care about me.
2. I’ve been making doctor’s appointments right and left, starting with my own gynecologist.  Next week:  a few specialists to whom she's referred me.
3. With just a few exceptions (this one suggested by the geneticist and this one by a friend), I’m not visiting websites or even thinking about typing "6174delT" into that ubiquitous Google search bar.  At the moment, I want to hear only from my own docs about what this mutation means for me.  I don’t really need to know right now about anyone else’s jaunt, sprint or saunter down this path.
4. Most of all, I’m trying not to panic, flip out or totally lose it.  Instead, I’m praying for grace, strength and courage, and doing my best to follow the imperative on the sign in the storefront I see each morning on my way to work:  “Keep Calm and Carry On.”

Having said that, I’m off to the Baruch bookstore to get this semester’s books.  With any luck, I'll have enough of a head to pay attention and read them... 

Later, Double Helix,
JanetheWriter