#BlogExodus 2: Honor

Studying at a long-ago UAHC Kallah at Brandeis University 

One of the selections preceding the Mourner’s Kaddish in the Reform Movement’s prayer book says, in part, this:

We do best homage to our dead when we live our lives more fully,
even in the shadow of our loss.
For each of our lives is worth the life of the whole world;
in each one is the breath of the Ultimate One.
In affirming the One, we affirm the worth of each one
whose life, now ended, brought us closer to the Source of life,
in whose unity no one is alone and every life finds purpose

Whether I have lived it more fully or not, I definitely have lived each of the last nearly six years in the shadow of the loss of my mother. I best honor her memory (and feel closest to her) when I:

1. Work to raise awareness about BRCA mutations and hereditary cancer.
2. Study Torah, especially Lech L’cha (her favorite) and Pinchas, which includes the story of the daughters of Zelophehad.
3. Speak my mind, which I don’t do often enough, but I’m getting better…
4. Vote.
5. Use the library.
6. Nix a Marriott for a different hotel chain.
7. Drink Dunkin’s coconut iced coffee (with a French cruller on the side, annually on Bastille Day, July 14).
8. Root for the Yankees, even though I don’t follow baseball.
9. Assuage irritability with a hefty “Feh,” or “A pox on her house!”
10. Encourage friends to “Go with the right foot” to interviews, new jobs, and adventures of all kinds
11. Gaze out on the Statue of Liberty and remember how lucky she and the rest of us are that her parents and my other grandfather, too, had the foresight, vision, courage, and moxie to leave eastern Europe in a timely way for the goldene medina.

Inspired by Ima on (and off) the Bima, this post is one in a series marking the days of the Jewish month of Nisan leading up to Passover, which begins at sundown on Friday, April 22, corresponding to 15 Nisan. If you want to play along, check out this year's  #BlogExodus and #ExodusGram prompts. Once again, this series of posts also is priming my heart, mind, and spirit to participate in Beyond Walls: Spiritual Writing at Kenyon, a six-day summer writing seminar that is an initiative of the Kenyon Institute at Kenyon College in Gambier, OH.

Why I Keep Telling My BRCA Story

Recently, I was invited to write about my BRCA journey for Invitae, a genetic information company, as part of a campaign to inform and inspire people to understand the impact of hereditary breast cancer. The hope is that these stories will jump-start a Facebook conversation about hereditary cancer.

In recognition of Hereditary Breast and Ovarian Cancer (HBOC) Week, which bridges ovarian cancer awareness month in September with breast cancer awareness month in October, I am pleased to share the piece I wrote for Invitae.

Although I tell my BRCA story again and again, it never seems to get old. There are always new people to hear it, and its potential to change the trajectory of just one person’s life makes the telling and the retelling – and all the sharing – worth it.

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.

#BlogExodus: Bitter

I just finished reading Jennifer Weiner’s article in today's paper about seders past and present, and how she’s the one in her family now in charge of the annual event.

In 2010, at 77, my mom was still the one in charge of our seders.  She’d been having some health issues so I went out to New Jersey the day before, Sunday, March 28, to help finish the preparations.  When I arrived, the table was already set, the soup and the matzah balls were made, and the brisket was in the crockpot.  I assembled some relish trays, chopped apples for charoset, and followed a recipe she’d clipped from the newspaper for a tri-colored gefilte fish loaf.  Before long, that, too, was covered with Saran and squished in the overflowing fridge, in the kitchen that smelled – as it did every year at this season – like Pesach.

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!

Lingering Remembrances of Loss

Two years ago today, I posted two separate messages on my mother’s CaringBridge site.

In the morning on May 19, 2010, I had this to say: 

As many of you already know, the last few weeks have been difficult for my mother.  During this last week in particular, her condition has deteriorated significantly and she has, despite medication, been in considerable pain. Yesterday, acting upon recommendations from both her oncologist and her long-time internist, my father, my sister and I agreed that it is now time to follow her wishes and make arrangements for her to enter a hospice facility.  Accordingly, we met at length with a hospice nurse, and within the next few days, we expect that my mom will be moved to Haven Hospice at JFK Hospital in Edison (right across the street from her beloved Temple Emanu-El).  In the meantime, she is resting comfortably in the hospital, and we, too, are comfortable knowing that we are abiding by my mother’s wishes.  

Many of you know, too, that the Festival of Shavuot, which began last night, is my mom’s favorite Jewish holiday.  As Rabbi Bravo wrote to a few of her own colleagues yesterday, “Diana would have wanted us to celebrate this holiday, just as she loved Torah and let it be her guide through life.  Ironically, she went into the hospital on Pesach, and here we are on Shavuot.  Her family and I decided that just as she lived her life by the Jewish calendar, so is she planning her end of days in a similar way.”

By evening, our 11 days of family time in hospice had begun:

This afternoon my mother was transferred from Robert Wood Johnson to the hospice facility at JFK Hospital in Edison.  When we left her, she was (as she has been for the last few days) unresponsive, but resting comfortably and in no pain.  The speed of her deterioration on all fronts during the last several days has been notable and somewhat startling, even to a longtime family friend who has been together with us frequently during the last seven weeks.  Having said that, we have reassessed our earlier thoughts regarding visitors, and would prefer that only family, clergy and close friends visit.  We want your memories of my mother to be filled with laughter, happy times and much goodness.  We are, of course, grateful for your outpouring of care and love on this site and invite you to continue to share your thoughts with us.

Of course there are sweet and happy remembrances, but today, it is May 19, 2010—a surreal and difficult day—that was at the forefront of my thoughts and memory.

The Army of Women Needs You!

I want you! 

You’d have to be living under a rock not to know that October is Breast Cancer Awareness Month.  You might not know, though, that this past Thursday, October 13, was Metastatic Breast Cancer Awareness Day.  In the interest of full disclosure, I didn’t know it either until I saw it on the Facebook page of the Army of Women.   According to its website, the Dr. Susan Love Research Foundation's Love/Avon Army of Women has two key goals:

• To recruit one million healthy women of every age and ethnicity, including breast cancer survivors and women at high-risk for the disease, to partner with breast cancer researchers and directly participate in the research that will eradicate breast cancer once and for all.
• To challenge the scientific community to expand its current focus to include breast cancer prevention research conducted on healthy women.

In an effort to build a strong voice among researchers and those affected by breast cancer, the Army of Women has launched the The “It Takes an Army” Project, a collection of videos and stories of being touched by breast cancer from its cadre of volunteers. Specifically, the Project asks participants to reflect on these two “distinct moments of realization: When was the moment you knew breast cancer had changed your life? And when was the moment you knew your life could change breast cancer?”

Here’s my submission…

May 9, 2010 was Mother's Day.  As I filled the vase with water from the sink in my mother's hospital room for the flowers we'd brought for her, I knew--I mean I really knew--it was the last Mother's Day we'd spend together.  Her oncologist wanted us to believe otherwise, but what he said didn't synch with the lightning-speed decline we'd been watching everyday for the last five weeks.  My mom had triple negative metastatic breast cancer and 10 days later, she was in hospice.  On May 30, she died, changing my life forever.

November 2, 2010 was Election Day.  A friend accompanied me to my appointment to meet with the Chief of the Clinical Genetics Service at Memorial Sloan-Kettering Cancer Center and one of the genetic counselors on his staff.  Several weeks earlier, my sister and I had tested for the BRCA gene mutations and, although she had tested negative, I had learned that I'm positive (as we surmise my mother was) for a BRCA2 mutation that significantly increases my lifetime risk of both breast and ovarian cancer.  As much as I already knew my options, I needed to hear them—I mean really hear them—from people who knew what they were talking about.  At the end of the appointment, at the counselor’s request, I signed paperwork and gave blood to participate in one of many long-term studies underway at Sloan-Kettering.  (I’ve since signed on to several others.)  If there’s even a remote possibility that my mutated genes can provide a teeny-tiny clue to doctors seeking a cure for breast cancer, I say, “go for it!” I am proud and honored to play a role in this work.

*     *     *

Although I’m off the hook for a mammogram (I had a prophylactic bilateral mastectomy in July), if you’re a woman over 40 and haven’t had one in the last 12 months, run, do not walk, to the phone to make an appointment.  It could save your life.