Last Tuesday marked the fourth anniversary of my prophylactic bilateral mastectomy (PBM) and reconstruction.  It was surgery that I believe saved my life.  FORCE: Facing Our Risk of Cancer Empowered has been equally life-saving in my BRCA journey.  If you're the least bit inclined to support this incredible organization during its annual fundraising campaign, I'd be grateful. The letter below provides addition information about this year's campaign and my ongoing involvement with the organization.  

July 21, 2015

Dear Friends and Family,

Thank you for visiting my FORCE fundraising page!  

Four years ago today, I underwent life-saving, life-changing, and life-affirming surgery that kept me in the hospital for five nights, including one in intensive care, and then at home recovering for more than eight weeks.  As tough as it was, I'd do it all again in a heartbeat.

No April 2 Redux

Dear The Mums,

Today is April 2.  Three years ago it was a Friday.  We were three days into counting the omer and Barbara Kline Shapiro's father had just died. His funeral was that morning and Daddy went, which meant that I was at the hospital by myself when Dr. S. told me, using his less-than-perfect bedside manner, that the metastatic breast cancer that had resulted in a pelvic fracture that was causing you such excruciating pain was all over your body--in your bones, in your liver and in your lungs.  Of course you were there, too, but the Fentanyl made you loopy and you sort of drifted in and out.  Lucky for me, Elliott and Shira showed up sometime during that morning and then I wasn't alone anymore.

Interestingly, on this year's April 2, I attended the first-ever benefit screening of "Decoding Annie Parker," a not-yet-released feature film about the discovery of the BRCA1 gene. Lucky for me, it was right here in New York at the Directors Guild Theater on the west side. Additional screenings -- sponsored by the The Basser Research Center for BRCA -- are scheduled for this fall in other cities, including Los Angeles on September 17 and Philadelphia on October 2.

The film traces the life of Annie Parker, who lost her mother and her sister to breast cancer before she herself battled both breast and ovarian cancer.  Even as Annie fought these diseases, convinced there was a genetic link within her family,  Dr. Mary-Claire King and her research team were working feverishly to connect the dots within families like Annie's, where breast cancer is present in more than one generation. Of course, in the end, they did just that and, with their discovery of the BRCA1 gene, made one of the most significant cancer breakthroughs of our time.

For many of us in the audience tonight, Annie Parker's story is our story.  It's my story and, although you didn't ever know it, it's your story, too. I'm indebted to Annie Parker for allowing it to be told and to Steve Bernstein, the producer, for telling it so well.  I am hopeful, too, that if enough people see Annie's story and the Basser Center is successful in its work, fewer families ever will have to endure an April 2 like the one we endured just a few short years ago.

Miss you....xoxo,
~ Boo!

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