Sunday, November 3, 2019

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.

Friday, August 2, 2019

Why It’s My Business to Comment on the World Around Me

Nearly two weeks ago, somewhat tongue in cheek (but with no malicious intent), I posted this photo that I’d taken during the hottest part of the day, when the heat index in New York City hovered around 110 degrees:


The accompanying text said:
I think God would have forgiven this man if he'd decided to take off his jacket today.
Update: Actually, I think he just should have taken off his jacket. It's not God who commands him to dress as though he's still living in 19th century Poland. Get with the weather, dude.

A flurry of likes, loves, and laughs followed the post, along with comments – some online and others by text.

By text, one friend asked: “Would say the same thing about a Muslim woman in full garb?”

I responded: “I’m not sure. I don’t know enough about the ‘why’ of Muslim dress.”

To which my friend said, “This feels to me a bit like MYOB.”

Is it?

Part of the reason I don’t know much about the "why" of Muslim dress is because I’m not Muslim. I am, however, Jewish and this guy is one of “my people.”

A proponent of talking openly and honestly about what we see, my sister noted, “The ‘why’ of Muslim dress is modesty, which is not the case for this man.”

So why do Hasidic men dress the way they do?

According to seeker.com:
Hasidic Judaism was founded in Eastern Europe, primarily the Poland and Ukraine regions, in the late 18th century. The traditional clothing stems primarily from Polish nobility standards of dress during this time. Contrary to popular assumption, Hasidic garb comes more from historical context rather than specific religious texts like the Torah.
As MyJewishLearning.com notes:
The Torah says little about clothing, either descriptively or prescriptively. Without explanation, it prohibits blending wool and linen in a garment (such garments are known as shatnez), in the same verse forbidding “mixing” different seeds and species of cattle (Leviticus 19:19). It forbids men from wearing women’s clothes and vice versa (Deuteronomy 22:5), without specifying the characteristics of either. It also requires Jews to put fringes on the corners of a four-pointed garment (Numbers 15:37-41), both as a way of identifying the Jew and reminding the Jew to observe the mitzvot commandments].
According to this Aish.com video, there are four reasons religious Jews dress the way they do: 1. It effects the way other people see them; 2. It effects how they perceive themselves; 3. It identifies them as members of a specific group; and 4. It expresses their honor and dignity as humans, distinct from animals.

These explanations are all well and good, but none of them expressly prohibits the man from removing his jacket if he’s bothered by excessive heat and humidity – a likely scenario on the day in question.

Perhaps it’s not for me to suggest that he do so – and, of course, I meant no offense in my observations – but, in these difficult times, it most certainly is my business to observe and reflect upon what I see around me.

Saturday, July 13, 2019

When Someone in the Family is #TragicallyJewish

My sister sometimes texts my dad and me pictures of herself before she heads out to teach The Art of Perception. I’ve started to follow her lead – mostly to connect with them both each morning.

Today, our thread started with this photo:














Daddy: Good morning. Fetching, as usual. Off to minyan? L.D.

Me: Yup. How was the new rabbi?

Daddy: She conducted a lovely, low-key service. She is very effective & I think only good things about her. Have a good day. L.D.

Me: So, I should plan to come for YK?

Daddy: If you wish, but we have time to talk about it. L.D.

Me: Indeed.

My Sister: I just woke up. Why are we talking about Yom Kippur? I am going to have breakfast.


Me: 

Daddy: I dunno. JEH likes to get her calendar in order early, I suppose. Have a good day & stay cool. L.D.

Me: My temple already sent info re: tix and choosing services. I’d rather fast forward right to Columbus Day. (Yes, I admit this is not a terribly #TragicallyJewish statement, but it is true. I would rather attend services 50 weeks of the year and skip the HHDs entirely. Anyone else?)

Daddy: YK is not until Oct. 9. (I wonder if he knew that off the top of his head or if he had to look it up.) We can talk about it. Not to worry. L.D.

Sunday, May 5, 2019

Here's What Makes an Amazing Jewish Leader

This day, as a new crop of Reform Jewish clergy was ordained as rabbis and cantors, seems a most fitting time to publish thoughts about two of my own beloved Jewish teachers and leaders. I was honored to speak about each one recently -- although these words hardly begin to scratch the surface of my admiration, respect, and esteem for them.

On Saturday, April 6, I introduced Rabbi Eric Yoffie, president emeritus of the Union for Reform Judaism, who was this year's Diana S. Herman Memorial Scholar-in-Residence at Temple Emanu-El in Edison, NJ. Here's what I said that afternoon:
Rabbi Eric Yoffie’s website describes him as “a bold, inspiring, and passionate speaker on Israel, interfaith dialogue, church-state issues, and American religious life.”
Wikipedia and the URJ’s website can fill you in on his educational background and the worship initiatives, social justice priorities, and other programs he championed during his 16-year tenure as president of the Union for Reform Judaism. 
And that is all useful and important information.  
But, I want to tell you briefly about the Eric Yoffie I know – the one who holds a special place in my heart.  
The one who quietly thinks things through, turning them over and over in his mind, carefully  examining every possible angle. 
The one who states his positions unflinchingly and with bold, concise eloquence – never backing down, no matter how fierce the opposition. 
The one who was never too busy to answer my Jewish questions, teach a bit of Torah, ask after my family, or where I would be for seder. 
The one who, running into my mom in a crowded elevator at her first URJ board meeting, didn’t miss a beat in wishing her a mazel tov on her newly minted graduate degree – and never ignored a chance to thank her and my dad for “sharing Jane with us.” 
The one who cares deeply about his own family, his friends, and, in his role as a Jewish leader, the people who worked with him and for him. 
The Eric Yoffie I know is a mensch– humble, genuine, full of integrity, with a well-calibrated moral compass that always points north. 
I’m incredibly proud and honored to have this Eric Yoffie in my world and to welcome him to Temple Emanu-El as the Diana S. Herman Memorial Scholar-in-Residence.
Earlier today, at a brunch honoring Lafayette College history professor and Hillel advisor Bob Weiner as he prepares to retire at the end of this year after 50 (yes, 50!) years  on the faculty, I had the pleasure of sharing these reminiscences:
I must have met Bob Weiner early in the fall semester in 1981. I lived in Ruef, and was just learning about pub night, “spinning disks,” and the fact that a roasted tomato sprinkled with parmesan breadcrumbs was the only vegetarian option in Marquis. 
Overwhelmed by the newness of it all, I yearned for something familiar, a pacing or rhythm I knew, something that felt a little like home. That yen landed me in Hoag Hall late on a Friday afternoon for Shabbat services. That’s where I first met Bob – 
Bob, who, over time, recognized and nurtured a spark of leadership potential that gave me enough confidence to join the Hillel board and work my way through the ranks, ultimately serving as president and organizing a Passover meal plan in the original Hillel House on McCartney Street.
Bob, who helped me design a Jewish studies minor – an offering that didn’t exist at Lafayette at the time. That cluster of courses led me to the Jewish non-profit sector, where I have spent the majority of my career. (And I’m not the only one. Following the synagogue shootings in Pittsburgh last fall, I reached out to Brian Schreiber, a fellow alum,….you know, that tall, lanky guy with the wide grin? He’s the executive director of Pittsburgh’s JCC and as he wrote to me at the time, “Bob was really the catalyst for my journey into Jewish communal life.”)
Bob, whose family has always been an integral part of his life at Lafayette. I first met Mark, his eldest son, when, as a high school senior, he and one of his classmates became my classmates when they came to campus to study in a first-year Hebrew course taught by Professor Marblestone, z’l. And, Sandy? In my mind’s eye, she’s always there – with a smile, a hug, and a kind word. And if she’s not, no doubt she’s tootling around the Lehigh Valley in her pink Mary Kay Cadillac!
Bob, who, together with Sandy, of course, (and I think I’m remembering this detail correctly) trekked to New Jersey for a sukkah party at my parents’ house, when I was living there following graduation. As Bob told me at the time, but for the fact that the Weiners lived in the Lehigh Valley and the Hermans lived in central New Jersey, he was sure the two couples would have been the best of friends.
Bob, who a few years later (and again with Sandy), attended my wedding and when the marriage dissolved,was still there with comforting words that validated the truly life-changing decision I had made.
Bob, who more recently invited me back to campus to speak at Hillel about working in the Reform Jewish world. Somewhere along the way, though, that plan got nixed in favor of a talk to a wider audience about hereditary cancer genetic mutations and my experience as a BRCA mutation carrier.
Bob, who is humble, genuine, full of integrity, caring, menschlichand what my grandmother would call a gutte neshuma.
Bob, you and Sandy hold a special place in my Lafayette memories and in my heart. As you set off down this new path, my dad, my sister, and I wish you abundant joy, laughter, love, and all good things. Godspeed, my friend.
I am blessed to have these two Jewish leaders in my orbit, and I was grateful for the opportunity to share with others the reasons each one holds a special place in my heart.