October’s Arrived, So I’m on My Soapbox

Credit: benefits.com

I didn’t know how I was going to write about Breast Cancer Awareness Month this year, and then I saw this message on Facebook, posted by a guy I knew in high school:

Lost my mother, grandmother (and both her sisters) and great grandmother to breast cancer. I get checked every year by my doctor.

#getchecked

#protectthetattas

I immediately sent him a private message: “Have you had genetic testing for BRCA and other mutations?”

Guy: “My brother has since he had daughters. Was negative. But he and I are vastly diff makeups. He’s def from my father’s DNA. And I’m sure I’m more my mother’s. Never got tested since I only had boys.”

I couldn’t have asked for a better set-up!

Me: “You should consider consulting with a genetic counselor because men, not only women, can pass mutations on to their children. So, if you carry a hereditary cancer mutation, each of your sons has a 50% chance of carrying it—and a 50% chance of passing it on to their own kids, both sons and daughters. Happy to discuss further if that would be helpful. I’ve learned all of this the hard way, and I work hard to make sure other families don’t have the experiences that mine did. Also, some of these mutations are much more prevalent among Ashkenazi Jews than they are in the general population. I’ll also butt out if you think this is none of my business.” 

Guy: “I appreciate it! I will pursue it further.”

Me: “Excellent! Please keep me posted.”  

If, in fact, Guy or either of his sons turns out to be a BRCA mutation carrier (pfth, pfth, pfth), they’re at increased risk of male breast cancer, prostate cancer, pancreatic cancer, and melanoma. So, I hope he follows through, gets genetic counseling, and does whatever might be necessary to protect his own health and that of his sons.

To learn more about hereditary cancer, visit FORCE: Facing Our Risk of Cancer Empowered, a national non-profit organization solely devoted to providing resources and support to the hereditary cancer community. To find a genetic counselor in your area, visit the National Society of Genetic Counselors. Visit JScreen.org to learn how you can test for hereditary cancer mutations from home and consult with a genetic counselor about the results.

Here's Where I Was "Strabunsing Harum"

July 8, 2021

Dear Aunt Claire,

If you tried to call me yesterday and wondered where I was “strabunsing harum” (gallivanting about) as you always wanted to know, I was with all the other people who gathered to celebrate you and your life—and, at your request, not grieve your death. Although we’re terribly sad, I hope your ears were ringing. So many people had lovely things to say about you and your long, well-lived life. You would have loved to chat with them all!

Marc and Ted each spoke lovingly of you and how you always managed to balance your career as an occupational therapist—first working with stroke patients and later starting the OT program at Kean College of New Jersey—with being their mother, long before work-life balance was even a thing.

I recall visiting you in your office at Kean on several occasions, and I remember this story that happened during your tenure there: You woke up in the middle of the night and couldn’t remember if you’d turned off the coffee pot in the office. Ever practical, you called the campus safety and security office to see if someone could go check on the coffee pot. After you made this request, the person on the other end of the phone said, “Lady, we can’t do that right now, there’s a fire on campus.” Luckily, the blaze wasn’t in your building and, as you discovered the next morning, you had, in fact, turned off the coffee machine!

Marc and Ted also talked about your optimism, your knack for connecting with strangers, and how your service as a trustee on the board of Beth Sholom Reform Temple in Clifton (now a part of Temple Ner Tamid in Bloomfield) exemplified your commitment to Judaism.

I have a few distinct memories from your time in that congregation: I remember how you nurtured the temple’s “Laura Fischer Memorial Library” into existence after Tante Laura died and honored her memory by serving as the librarian for many years. I wonder what became of all those Laura Fischer Library books with the blue and white bookplates. Maybe some of them made it to Ner Tamid…

At Ted’s bar mitzvah luncheon in the social hall, when the DJ told him it was time to dance with his favorite girl, instead of picking you, he picked Jodi Cook… and in the four-plus decades since, I’ve reminded him of that faux pas every so often.

Lastly, although it happened long before I entered the Jewish professional world, I knew that having a woman cantor, as that congregation did, was a big deal. I’m not sure I realized back then that Barbara Ostfeld was the first ordained female cantor, but I always knew you were quite fond of her—and it was mutual. I connected with her during my time at the URJ, and she wrote this to me earlier this week, “I'm sorry and think that this particular loss is shared to one degree or another by so many. I count myself among them. She was unforgettable.”

Unforgettable is an apt description. So many of my friends (and Ma’s and Amy’s, too) remember you—and told me so on Facebook: “I remember your aunt as a sweet, quiet, gentle soul,” said Rabbi Debbie Bravo; Ma’s friend, Kathy Kahn, said, “I remember Claire so well. What a sweetheart she was...” Amy’s lifelong friend, Maria, wrote: “Aunt Claire was a lovely person…” (I love how she called you “Aunt Claire,” just like everyone called Uncle Irv “Uncle Irv.”) Judy Tushman said, “Claire’s collection of Quimper was the first thing she showed me in her apartment. It was amazing, and so was Claire. A truly lovely person, and a pleasure to know.”

Speaking of Quimper, I used to love to scour the tables at flea markets and antique shows for the familiar yellow and blue pottery and was so excited when, on rare occasions, I spotted it. One year that happened a few months before one of your milestone birthdays, and I was thrilled to purchase the two small saucers for you, adding a small card that said that as aunts go, no one could Quimper!

Even though it was a funeral, it was nice to see Marilyn and Phyllis (they hadn’t seen each other since before the pandemic), Norma, Eddie, and Ellen (and her husband), all of whom where there for you, as was Colleen’s sister and her family, along with a few of their cousins. Phyllis told me that she was so sad about you because, “Not only were she and your mom my cousins, but they were my friends. As a matter of fact, Claire and Jash were chaperones at my Sweet 16 party which was held at the China Doll in Manhattan.”

Orit Simhoni came up from Maryland to be with us yesterday, and although I spoke with her only briefly, she told me what a mentor you always were to her in her own career as an OT. In some ways, you were an OT rock star. Our family friend and also an OT, Jeanne Weisblatt, told me she “remembered meeting your aunt a long time ago and being so excited that she was a professor of occupational therapy at Kean College.”

I remember other things about your career—like how if you have to walk steps with a bad foot or ankle, you’re supposed to start “up with good and down with the bad.” I also recall how you often had a tape measure in your purse specifically to measure the width of various public restroom stalls to see if a wheelchair could fit within them—long before the ADA was enacted into law. Mostly, I remember the story you told about sending pairs of students from Kean to the mall to take turns being pushed by the other in a wheelchair, gaining a new perspective about the real-life, daily challenges people using wheelchairs face. When one pair of students switched places in public, they reported back to you and the class that they’d inadvertently caught the attention of other shoppers, who no doubt thought they were witnessing a miraculous cure unfold.

Debbie Stone was there, too, and told me how you and Uncle Jash were in the congregation the night she was installed as president of Temple Beth Tikvah, the community you joined after BSRT got folded into Ner Tamid, and how nice it was to look out and see your smiling face. Seeing a few pictures of you on Facebook, one of my friends wrote to me: “I can see your face in her smile.”

Mrs. Marks and Cheryl Ronan from Brookshire Drive were there, too. Mrs. Marks looks exactly as I remember her, and she told me that Phyllis’ daughter is pregnant, and she and Mr. Marks are very excited about becoming great-grandparents in a few months. I wouldn’t have known Cheryl, but I did remember that we’re nearly the exact same age (two days apart, it turns out), and it was nice to chat with her. All the “kids” talked about your backyard, the scene of so many cookouts and family celebrations of all kinds. I can see it all in my mind’s eye as though it was yesterday—the patio, Uncle Irv’s garden, home plate, the pitcher’s mound near the oak tree, and all your turquoise and white napkins, serving pieces, and paper goods that were specifically for outdoor entertaining. Someone mentioned there were no fences between most of the backyards on the street, so we probably could have walked straight through them all the way to Route 23.

I also spent time chatting with Beth, who drove to New Jersey from near State College, Pennsylvania. She told me about your trip together to Fallingwater (I remember when you went with her) and also about the place (whose name I cannot remember) you visited with her when she went to see you in Detroit a few years ago. She’s coming to NYC in October, and Amy and I plan to do some museum-hopping with her while she’s here. We’ve never spent time with her, and I’m looking forward to it. In an email I wrote to her last night, I said, “No doubt, we'll bring Aunt Claire along with us in spirit” and that is definitely true. I can’t quite believe you’re gone, but I will carry you in my heart always.

xoxo,

Jane

P.S. Of course, I'll always be so grateful for your help after my surgery in 2011 and remember how you wanted to be the first one to stay with me because, as you said, you knew how to manage the drains. I could not have asked for better or more loving care during that week.

With Hereditary Cancer Syndrome, Every Month Is an Awareness Month

Thank goodness it's November.

It's taken me a long time to realize what a toll October, Breast Cancer Awareness Month, takes on me each year, but last week, it hit me. At an awareness event at my synagogue, one of the presenters scribbled the word "metastatic" in all capital letters on the flipchart at the front of the room - M-E-T-A-S-T-A-T-I-C - and I thought I might lose it.

As though a time machine had whisked me away, it was Friday, April 2, 2010, all over again; I was alone with my mom at the hospital. Just outside the room where she'd been since the previous Monday (the night we were to have hosted the first seder of 5770), amidst the constant bustle of the nurses' station, her oncologist offhandedly said to me: "It's everywhere."

It's impossible to believe that fateful day was nearly a decade (a decade?!?) ago, but in the intervening years, I've done everything possible to protect my own health since I learned I carry the same BRCA2 genetic mutation that we now know contributed to my mom's death. In addition to significantly increasing carriers' lifetime risk for breast and ovarian cancer, it also raises my risk of melanoma and pancreatic cancer - and in men, the risk of breast, prostate, melanoma, and pancreatic cancer.

Although I'm glad to have turned the corner from October into November, the latter is Pancreatic Awareness Month, and my vigilance is year-round, so, here are a few statistics about the disease from the Pancreatic Cancer Action Network (PANCAN):

• Pancreatic cancer is the third leading cause of cancer-related deaths in the United States;
• One of the deadliest cancers, it has an extremely low survival rate - just 9 percent;
• This year, an estimated 56,770 Americans will be diagnosed with pancreatic cancer and 45,750 will die from the disease; and
• It is estimated that in or around 2020 (just two months away), the disease will rise to be the second leading cause of cancer-related deaths.

Of course, I'm grateful that my family doesn't have a history of pancreatic cancer. At the same time, according to PANCAN, the cause of most pancreatic cancer is unknown, and there are no early detection tests and few effective treatments.

Having said that, with each passing year, I'm increasingly grateful to FORCE: Facing Our Risk of Cancer Empowered, the grassroots organization that has done so much for me during the last decade. In addition to introducing me to other BRCA+ women whom I could learn from and lean on throughout my journey, FORCE has given me a network of friends who are framily and a platform from which I can spread awareness about hereditary cancer mutations, as well as share my knowledge, gained through experience, to help women who are behind me - as thrivers, survivors, and previvors - on their own hereditary cancer journeys.

Most recently, FORCE helped me uncover this clinical trial for pancreatic surveillance, designed to collect enough data to allow the researcher to obtain funding to conduct a full study that may lead to early detection among individuals at highest risk. Because it's open to individuals with BRCA mutations, but without a family history of pancreatic cancer, it ensures that I can continue to do everything possible to protect my health. For this and so much more, I'm ever-grateful to my FORCE family.

With that in mind, please consider making a donation to FORCE - not only in gratitude for what the organization has done for me, but also to ensure that it can continue to provide much needed support, resources, and advocacy to others affected by hereditary cancer syndrome, and to help me fulfill my annual $250 fundraising goal as a volunteer outreach leader for FORCE in New York City.

With deep thanks and appreciation,
~ Jane.

Is There a Gene for Snack-Packing?

Early today – and I mean early – my sister and I set out for White Plains, which is about an hour north of New York City. Our destination was White Plains Hospital, where I’m enrolled in a clinical trial that seeks to determine if regular screening of individuals at increased risk of pancreatic cancer will result in early detection, if and when the disease occurs. (Poo-poo-poo… even though I’m not superstitious or anything.)

Thankfully, the endoscopic ultrasound, which is somewhat invasive and requires a “Propofol nap,” was uneventful with normal results (Keinehora… even though I’m not superstitious or anything), and by late morning, we were headed back to Gotham on the train.

Needing a snack to prevent “hangry” from setting in, my sister pulled from her purse a zip-lock bag filled with fresh cherries. Seeing them reminded me of my own snack buried in my bag: a zip-lock bag of almonds and pitted dates.

Chuckling over the similarity, my sister said, “You get that from your grandmother. Fanny lives.” Indeed, our grandmother lives on through us in many ways. Today it was through our matching zip-lock bags of snacks.

Yes, It’s ThatTime of Year Again

Friends,

You know the least favorite part of my work on behalf of FORCE: Facing Our Risk of Cancer Empowered is asking for funds to support the critical work this organization so effectively accomplishes, but as Liza Minnelli rightly sang in “Cabaret,” “Money makes the world go round.”

You also know that your philanthropic donation (no matter the size) will help ensure that FORCE is able to continue to raise awareness about inherited genetic mutations (most people who carry them are unaware of their status), offer emotional support, provide practical, evidence-based resources and scientific updates, advance targeted research, advocate for protections on behalf of those in the hereditary cancer community, and more. Most vital of all, thanks to FORCE, no one has to travel this journey alone.

Lastly, you know that the FORCE community and the work to which we, a cadre of mostly volunteers, are deeply devoted mean so much to the countless individuals and families affected by hereditary cancer-causing mutations – including me.

For these reasons and so many others, I appreciate your support of this cause and am extremely grateful to have you in my life.

From the bottom of my heart, thank you,
~ Jane.

I Wasn’t Sick, But the Community Helped Me Heal

Tonight’s Shabbat service at Temple Shaaray Tefila used bibliodrama and storytelling to explore the themes of illness, healing, loneliness, and community associated with this week’s Torah portion, Tazria-Metzora. I was honored to share my personal story of healing as part of the service.

Thank you, Rabbi Lenza… I’m honored to speak to you tonight. 

As I was thinking about how to share my story of illness – which wasn’t really illness at all – and the healing that followed, I realized it’s not only my story. It has everything to do with how this community responded and so, this is really our story...and it goes something like this…

In the spring of 2010, my mom died from aggressive breast cancer that ravaged her body in seven weeks’ time – literally from Pesach to Shavuot. During those weeks, even before my story began, Rabbi Stein called me regularly, just to check in. 

That summer, my sister and I got genetic counseling and testing for BRCA mutations. Indeed, a genetic mutation had been lurking in our family for generations. And, it had been passed along to me – significantly increasing the chance that in my lifetime, I would get breast, ovarian, and/or pancreatic cancer, as well as melanoma. 

An emotional roller-coaster ride ensued. At each turn was another doctor’s appointment, more reading and research, and intense loneliness. Still mourning my mom, suddenly I was a member of a club I never even knew existed – and I didn’t know anyone else who belonged. 

I wasn’t sick, but if I wanted to stay that way, I needed to educate myself and make some tough choices, choices that were made more difficult precisely because I was healthy. I was playing Russian roulette...and I’m no gambler.

I’d recently been attending the chapel minyan to say kaddish for my mom and I shared my news with a few people in the group. (It’s here that my story and the congregation’s story became one.) 

Four months later, I had the first of several preventive surgeries, skipping minyan for about five weeks while I recovered. During those weeks, Jesse Berger, whom I didn’t know well, called to see where I’d been; Brigitte Sion, challah in tow, came to visit on a Friday afternoon. 

With their acts of kindness and those of others in this community, I felt anything but isolated. Even now, all these years later, recalling those gestures warms my heart.  

Again, in July 2011, I disappeared from minyan – this time for more extensive preventive surgery that kept me in the hospital for five nights and out of commission until the fall.

As before, calls, visits, and well wishes, from the community and clergy helped sustain me. I was pleased to join what I dubbed (and this is a little PG-13) the “Sisterhood of the Traveling Bras,” whose comfy, post-surgery under-things were loaned to me by a Shaaray staffer who, as a fellow mutation carrier, had already been down this path. She knew exactly what I’d need while I recovered. When I returned to minyan after weeks away, the welcome I received fed my soul in ways that have stayed with me. 

It’s been almost seven years since my most recent surgery. Although physical and emotional scars remain, I am healthy – and doing everything I can to stay that way. I’ve recently enrolled in a clinical surveillance study designed to advance early detection of pancreatic cancer among those at highest risk. 

My experiences have made me an activist in the hereditary cancer community, particularly committed to raising awareness about inherited genetic mutations, especially in families like mine, where flawed genes often remain hidden until somebody dies. 

If you remember nothing else from this story, please remember this: BRCA mutations are considered rare, present in the general population in approximately one in every 400 to 800 people. In the Ashkenazi Jewish population, though, one in 40 of us – both men and women – carries a mutation, and 90 percent of carriers are unaware of their status. 

If you want to know more, let’s chat during the oneg Shabbat.

In the meantime, I’m so grateful to this community, and especially to the members of the minyan, for the concern, support, and kindnesses they showed me during my “non-illness” and recovery – and for the caring, kindness, and camaraderie I believe we show each other from week to week as we deal with the ups and downs in our lives.

Thank you and Shabbat shalom.

#BlogExodus: Welcome

Although I’m not sick (pooh, pooh, pooh), today I welcomed yet another doctor to my larger-than-average cohort of medical professionals. I’ve signed on to be a subject in a research study surveilling BRCA2 mutation carriers and others at high risk for pancreatic cancer. The study’s primary outcome measures are:

• The number of premalignant or malignant pancreatic conditions found by alternating annual endoscopic ultrasound (a somewhat invasive procedure that requires anesthesia) with MRI testing over the course of five years
• The number of participants with premalignant or malignant pancreatic conditions, as a measure of safety and efficacy

I know I sound like a broken record (do millennials understand this expression?), but BRCA mutation carriers are at increased lifetime risk of developing not only breast and ovarian cancers, but also pancreatic and prostate cancers, as well as melanoma and male breast cancer. Furthermore, the lifetime risk of pancreatic cancer is higher among those with BRCA2 mutations than those with BRCA1 mutations. The risk for BRCA1 mutation carriers who also have a family history of pancreatic cancer approximately equals the risk among those with BRCA2 mutations.

It’s estimated that one in 400 people in the United States carries a BRCA mutation and most of them are unaware of their genetic status. Within the Ashkenazi Jewish community, approximately one in 40 people is a BRCA mutation carrier.

Considering that the schlep to White Plains was relatively painless (thanks to the good company of my sister!), there seemingly are no downsides to my participating in this endeavor. Of course, it will offer me a layer of protection against pancreatic cancer that I otherwise would not have, but it also will advance the body of scientific knowledge around screening for this disease, potentially saving lives along the way.

For more information about BRCA and other hereditary cancer mutations, visit FORCE: Facing Our Risk of Cancer Empowered, a grassroots organization that offers information and support, and promotes evidence-based research, advocacy, and awareness endeavors on behalf of individuals and families affected by hereditary cancer.

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, March 30, corresponding to the Hebrew date 15 Nisan 5778. If you want to play along, check out this year's #BlogExodus and #ExodusGram prompts.

#BlogExodus: Grow

I know today has grown entirely too long because I am just now, at slightly after 10 p.m., lighting the yahrzeit candle for my grandfather, who died 32 years ago tomorrow... and having no luck with either the wick or the match.

I wasn’t home to light the candle earlier in the evening because I was facilitating the NYC meeting of FORCE: Facing Our Risk of Cancer Empowered , a grassroots organization that offers information, resources, and support to individuals and families affected by hereditary cancer.

Ironically (or perhaps not), my grandfather died from BRCA-related metastatic prostate cancer before “BRCA-related metastatic prostate cancer” was in the lexicon. For the last seven-plus years, though, it’s been part of my lexicon, as I’ve worked to raise awareness about the prevalence of BRCA mutations in Ashkenazi Jewish families – and most especially how they can lurk in the background, undetected for generations.

Making the tough decisions to undergo multiple surgeries and long recoveries to prevent cancer and ensure my genetics would not determine my destiny has helped me grow.

Learning the ins and outs of these mutations, advocating on behalf of the community affected by them, and offering advice and information to women (and men) following me on this path has helped me grow.

Perhaps most of all, the warm, wonderful embrace of others in the hereditary cancer community has helped me grow and enriched my life in untold ways – ways I could not have ever imagined back when BRCA wasn’t part of the lexicon.

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, March 30, corresponding to the Hebrew date 15 Nisan 5778. If you want to play along, check out this year's #BlogExodus and #ExodusGram prompts .

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.

#BlogExodus: Join

Back in January, I started working with my fellow FORCE group leader to plan a spring fundraising event for the organization that means so much to us because it was there when we needed information and support in dealing with our hereditary cancer mutations.

Although we volunteer, giving generously and caringly of our own time and knowledge to those following in our footsteps – planning and facilitating group meetings and providing one-on-one support to members – it still takes money to run a non-profit organization. There are brochures and business cards to print, conference calls to connect volunteers, salaries to pay, an annual conference to organize, and so much more that goes into making sure no one travels the hereditary cancer journey alone.

With that in mind, I invite you (or your friends and family in New York City) to join us for a terrific evening to support FORCE and its work on behalf of the hereditary cancer community:

Monday, May 1, 2017 

6-8 p.m.

SideBAR

118 East 15th Street and Irving Place

New York City

Purchase tickets or donate today.

$65 per person includes appetizers, two drinks, and your chance to be chosen as the evening's model for a make-up or guy brow demo, done by celebrity make-up artist and brow expert Ramy Gafni. 

The best-selling author of How to Fake Real Beauty: Tricks of the Trade to Master Your Makeup, Ramy will inspire you with his personal story, professional experiences, “minimum make-up, maximum impact” application techniques, and the guy brow, his trademarked eyebrow sculpting for men.

There also will be chance drawings for fabulous prizes, including samples of Ramy's cosmetics, lots of great books, a professional massage, an acupuncture session, two tickets to Broadway's Phantom of the Opera, including a signed Playbill, and guided backstage tour....and more!

We look forward to seeing you (or your NYC friends and family) on May 1! 

#BlogElul: Bless

Six years ago I learned that I carry a BRCA genetic mutation that significantly increases my lifetime risk of breast and ovarian cancer, as well as others. Although it did not seem so at the time, this knowledge has turned out to be a blessing many times over.

First and foremost, it enabled me to make decisions – yes, they were excruciatingly painful – not to allow my genetics to determine my destiny. Thanks to modern science, technology, and medicine, I underwent a series of surgeries that I believe saved my life. A blessing.

More than that, thanks to my BRCA mutation status, I’ve connected with a terrific community of fellow mutation carriers, healthcare professionals, and awareness advocates. This incredible network of people not only provided support and resources when I needed them myself, but constantly helps me give back to the many hereditary cancer mutation carriers who are behind me in their own journeys. A blessing.

Today, my own journey as a hereditary breast and ovarian cancer previvor took me to the New York Stock Exchange, where Invitae and its guests rang the closing bell, signaling the end of the trading day. It was an incredible experience and a blessing, too.

As my BRCA mutation status has brought me blessings and allowed me to bring them to others, may it be that I continue to receive and give blessings in the new year.

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.

How You Can Help Me Give Back to the BRCA Community

I’ve been telling and re-telling my family’s BRCA story for nearly six years now, and with each re-telling there are new pieces and evolving elements to incorporate into the narrative.

However, there are three parts of the account that never change:

1. Diagnosed as a BRCA mutation carrier at age 47, I am thankful each and every day that even at that age, I was able to become a “previvor.” By taking action to protect my health, I prevented my genetic predisposition to cancer from determining my destiny.
2. As a result of my experience, BRCA awareness, particularly in families like mine where the presence of a cancer-causing hereditary mutation may not be blatant, has become my “soapbox issue.” I will talk about it with anyone and everyone because you just never know when you might change the trajectory of someone’s life or that of their family.
3. None of this important and, yes, sacred work would be possible without the incredible support I received from FORCE: Facing Our Risk of Cancer Empowered, a national not-for-profit organization that provides support, evidence-based resources, and a community of people who have been affected by hereditary cancer.

I’m proud to be giving back to the organization that has given me so much. Currently, i volunteer as one of two Peer Support Group Leaders for the NYC FORCE group, and as a Research Advocate, which means I’ve been specially trained to engage in research advocacy on behalf of the hereditary breast and ovarian cancer community.

In addition to sharing my time, energy, and experience as a BRCA mutation carrier, I support FORCE financially. Although asking my family and friends for an annual donation is not among my favorite activities, I know you appreciate how important this organization and this work are – not just to me, but to all of us in the hereditary cancer community. With your help – at whatever level you choose – I can reach my goal of $500, which will help FORCE continue to provide vital support and myriad resources to individuals and families affected by hereditary cancer.

Thank you. I am grateful for your friendship and for your support of this important cause in my life.

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.

So Much to Write, So Little Time

I have been percolating a post since Friday, January 23, but haven't yet had enough uninterrupted time to sit down and actually write it.  Hopefully in the next day or two...

In the meantime, I did have enough time to be a guest blogger, writing this post, which appears over on the blog of FORCE: Facing Our Risk of Cancer Empowered.

Looking forward to being together with my sisters in Philadelphia in June.  Who's with me?

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.

In Honor of My Mammoversary

Yesterday, I posted this update on Facebook:

Happy erev mammoversary to me! Three years and counting...on many more healthy ones. @facingourrisk #BRCA #grateful

Today, I posted this one:

Three years ago today, I slept through the entire day. Oh, right...I was saving my life. Thanks, Dr. G and Dr. M!

This evening, I wrote this post:  

I promise this will be the last mammoversary post until next year. 

In honor of the occasion, I just made a donation to FORCE: Facing Our Risk of Cancer Empowered, the amazing organization that empowered me to make the tough medical decisions that I believe saved my life...and has been with me every step of the way, providing information, resources and incredible support. FORCE's 2014 fundraising campaign is underway and I'm proud to pay it forward. I'd be grateful if you'd consider joining me.Thank you!

A link at the bottom of this last post takes you to my FirstGiving fundraising page, where you can read this message and donate:

Thank you for visiting my FORCE fundraising page!

Although asking friends and family to donate to a specific cause is not among my favorite things to do, I'm willing to do it to benefit FORCE:  Facing Our Risk of Cancer Empowered during the 2014 fundraising campaign.  I truly believe that I would not be where I am in my BRCA journey today without this incredible organization that is solely devoted to providing up-to-date information, resources, and support to the community of people who are at risk of hereditary breast and ovarian cancer (HBOC) syndrome.

Because I have been exceedingly open and forthcoming about my BRCA mutation and the steps I've taken in the last several years to reduce my personal risk, I'm not going to retell my story here.  If you want to read about it, there are plenty of details elsewhere on this blog. (Using the box in the upper left-hand corner of the page, search "BRCA" and then sort by date and you should be able to piece the story together fairly well.)

I will say, however, that I am proud and honored to give back to FORCE as one of two volunteer outreach coordinators in New York City. In this role, I work with my partner coordinator to schedule, organize and help facilitate peer-to-peer support meetings on topics of interest to the hereditary cancer commuity; provide one-on-one support to members dealing with emotional and physical impacts of their BRCA status; and manage regular communications to members of FORCE's NYC group.  I also speak and write frequently about BRCA gene mutations in an effort to raise awareness about their presence, particularly in the Ashkenazi Jewish community, where one in 40 individuals is a carrier, and most of these people are unaware of their status.

Indeed, until four years ago, when my sister (thankfully, she's negative) and I took the initiative to get tested after we lost our mom to exceedingly virulent  breast cancer, we, too, were unaware of the presence of a BRCA mutation in our family.  Although we'll never know how different our family's story might have been had we known about the mutation sooner, if my work with FORCE can prevent even one other family from enduring what we did because we didn't know, I believe some good will come from our experience and that my endeavors will contribute to the Jewish concept of tikkun olam -- repair of our world.

Because FORCE has been been -- and continues to be -- a tremendous blessing to me and to so many others, I would be exceedingly grateful for your support during this year's fundraising campaign.  (Donating through this FirstGiving page is simple, fast, and fully secure.)

Thank you...xoxo,

~ Jane.

Where's JanetheWriter?

Today, I'm blogging over here, where I've put myself "out there" in an intensely personal way.  I'm a tad nervous about what may get posted in the comments section of the piece, but hopeful, too, that people will be respectful of the tough choices faced by those of us affected by hereditary breast and ovarian cancer (HBOC) -- and the decisions we make to preserve our health and save our own lives.

As I always say, if the post raises awareness about BRCA mutations in even one family where they weren't considered before, my "out-there-ness" will have been worth the effort.  For more information about these genetic defects, visit the FORCE website or be in touch with me directly.

Brought to You by the Letter "B"

For a long time, I've known that my Aunt Claire and her first cousin, Phyllis, both have middle names that begin with "B" -- Claire Bertha and Phyllis Beverly -- and that they were named in memory of the same person.  Except that the person's name began with "B," I knew nothing more.

So I asked my Aunt Claire, who told me that it was my grandfather's mother, Brana.

Looking the name up in my copy of the Complete Dictionary of English and Hebrew First Names, I could not find it as Aunt Claire spelled it:  B-r-a-n-a.

However, the last entry on the bottom of page 294 is "Brina." In addition to noting a Hebrew spelling of bet-resh-yud-yud-nun-aleph, the entry says, "From the Yiddish, meaning 'brown.'  Also, from the Slavic, meaning 'protector.'"

The first entry on the top of page 295 is "Brine."  Like the English spelling, which is nearly identical to Brina except for the last letter, so too does the Hebrew spelling have a different letter at the end:  bet-resh-yud-yud-nun-ayin.  The description of the name, however, is identical:  "From the Yiddish, meaning 'brown.'  Akin to Brune."

Here's what Kolatch has to say about Brune:  "From the Yiddish, meaning 'brown,' or from the German name Brunhild, meaning 'fighter in armor.' See also Brina and Brine."  Like the English, the Hebrew spelling is slightly different than the two previous names:  bet-resh-vav-nun-ayin.

Satisfied that one of these variants was my great-grandmother's name, I asked Aunt Claire what she knew about her.  She said she didn't know much except that she'd died young, and that nobody talked much about her.  Her husband, Jacob, for whom I am named, remarried and lived into his 90s.

I have to admit that Aunt Claire's descriptions of her paternal grandparents make me wonder if it was Brina who carried the BRCA gene mutation that appears to have been passed along to my grandfather (he died from prostate cancer), and definitely came down to my mom, to my aunt, and to me.

Although we'll never know the answer, of course, it seems plausible to me.

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