Sunday, December 30, 2018

The Seven Books I Read in the Last 12 Months

Last year was hardly my “readingest” year ever and I’m glad to report that I’ve done better in 2018. Having set a modest goal to read six books this year, I surpassed that mark and completed these seven books:
  1. The Weight of Ink, by Rachel Kadish: This is the kind of book you can't stop reading, but you don't want to end. Filled with richly drawn (and flawed) characters, the novel's story lines are heavily built around characters’ encounters with their own flaws. The parallel stories – four centuries apart – were equally compelling, and the mystery of how each would end propelled me through. A fabulous read!
  2. The Marrying of Chani Kaufman, by Eve Harris: To be honest, I was somewhat surprised this book was long-listed for the Man Booker Prize because although I enjoyed it at the time, I’ve not thought about it since turning the last page. Neither the characters nor the story’s details have stayed with me, and, it seems, there was little to ponder or chew on once Chani and her groom (I can’t even remember his name…Ben? Jacob? Shmuel?) were actually married.
  3. How Doctors Think, by Jerome Groopman: I’ve eyeballed Groopman’s books many times, but only read this one after picking it up at the annual Bryn Mawr Wellesley book sale in Princeton. As someone who uses our broken medical system extensively in an attempt to remain healthy despite heavy odds, I appreciated Groopman’s perspectives and insights, culled from both his professional expertise and his own forays into the system as a patient.
  4. Mothering Sunday, by Graham Swift: “You must read this one,” my sister said emphatically, our arms already full of treasures from our afternoon of browsing with our dad at the Bryn Mawr Wellesley book sale. Heeding her advice, I found a real gem: beautifully written, poignant, thought-provoking, and sad, with more than a bit of staying power.
  5. Internal Medicine: A Doctor's Stories, by Terrence Holt: Following in the footsteps of William Carlos Williams, Michael Creighton, Robin Cook, Siddhartha Mukherjee, and other physician-writers, Holt offers a collection of short stories that bring heart and soul to the clinical side of becoming a doctor. The author is a former literature and writing professor, and more than once I had to consult the dictionary to look up words I didn’t know.
  6. Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them, by Gina Kolata: Given my interest in diseases caused by inherited genetic mutations, this book, which details the Baxley family’s experience with Gerstmann–Sträussler–Scheinker syndrome (GSS), caught my eye. The non-fiction account reads like a novel and gives me renewed respect for pre-implantation genetic diagnosis (PGD) and the tremendous hope it brings to families whose mutations cause a certain and horrible death. May science continue to search for answers around GSS and other prion diseases, and may the efforts bear fruit quickly – for the Baxleys and other families affected by these genetic mutations.
  7. Bellevue: Three Centuries of Medicine and Mayhem at America's Most Storied Hospital, by David Oshinsky: A soup-to-nuts biography of Bellevue Hospital, this book is more accurately a sociological study of New York City, public health, and a colorful cast of characters including physicians, research scientists, and politicians. The early history of today’s behemoth medical center, in particular, is filled with fascinating stories, including the “invention” of ambulance service, which began with horses and buggies in the streets of 17th century Manhattan. A dense and wonderful read!
I’m currently about 100 pages into Sapiens: A Brief History of Humankind, by Yuval Noah Harari. A heavy, slow read (like so many other of my choices) we may be well into 2019 before I finish it. Having said that, I, once again, will aim to read six books in the new year, and hope they prove to be as enjoyable and enlightening as the ones I read in the year now ending.

Friday, November 23, 2018

5 Things I’m Grateful for This Black Friday…and Always

Photo: Memorial Sloan Kettering Cancer Center
These people, places and things (but nothing with a SKU or UPC code) are bringing me joy and gratitude this Black Friday – and all year long.

5. Living and working in New York City

Despite my love-hate relationship with the city – its noise, crowds, transit system, and other offerings, good and not so good – there’s nothing quite like helpful New Yorkers, bodega coffee, or crossing 23rd Street against the light on a holiday morning when New York shows us its quiet side.

4. William, my trainer

From crunches to rowing, lifting to running, boxing to jumping, the two hours I spend under William’s guidance each week make me a partner in caring for my body, building physical and emotional strength, and expanding my world with a small view into the life of an Ecuadorian immigrant family.

3. Health and the insurance to help guard it

A visit to the Evelyn H. Lauder Breast Center at Memorial Sloan Kettering Cancer Center right before Thanksgiving each year not only reminds me not to take my health for granted, but also to remember the hundreds of people who, whether they know it or not, play a role in ensuring my inherited genetics don’t determine my destiny.

2. The minyan at Temple Shaaray Tefila

In a large congregation, it’s a blessing to slip into “my pew” on most Saturday mornings and to connect to the people around me, and the prayers, music, and rituals that will unfold in the coming hours. Torah study, too, connects me to my (ancient) people, unchanged by the millennia, but ever-changing because of my own new perspectives, knowledge, and “ah-ha” moments.

1. Family and friends

More than an individual's presence, it is the love, support, joy, laughter, humanity, honesty, attention, time, and more that we share with one another that makes my life rich and full. Thanks to the people in my village and in my world – near and far, new and not so new, known and unknown – I truly have everything I need.

Sunday, November 18, 2018

Laughing Uncontrollably in the Cemetery

Dear Nathan,

We owe you an apology. We didn’t mean to laugh with such abandon at your grave yesterday, so please let me explain.

It was my mom’s birthday and we were visiting her grave, just a row over from yours, when my sister noticed the back of the tall, sawed off tree trunk that is your gravestone. (To be honest, I don’t know why we never noticed it before, since we’ve been visiting at the site since the mid-1980s, when my grandfather was buried directly opposite where my mom’s grave is now. Of course, my sister says we have better Visual Intelligence these days, and she may be right.)

In any case, when we were finished visiting my mom and her parents, we wandered over to the front of your tree trunk, which my dad told us often symbolizes a life cut off before its time. In fact, you were a mere 28 years old when you died in 1943. We studied the stone which holds a black and white image of you, wearing a large fedora-style hat. Indeed, you were a handsome guy. My father told us in his experience, it’s often Russians who place photos on gravestones such as is on yours. Perhaps you were Russian…perhaps not.

In any event, I also noticed the pitcher and bowl engraved on your tombstone, which is when I said out loud, “I wonder what the pitcher means.”

My dad, despite his new hearing aids, thought I was asking about the picture and replied, “It’s Russian.”

“No, the pitcher,” my sister said, giggling, “not the picture! Jane’s the last person who would mispronounce in that way.”

With that, we all exploded into peals of laughter. It was the kind of laughter that makes tears run down your face and the more we laughed, the less we could stop. It’s a good thing it was Shabbat and there was no one around.

We truly meant no disrespect.

Back in the car, once the giggles finally subsided, I texted this to a rabbi friend: “What does it mean when there’s a pitcher on a gravestone? Today’s my mom’s b’day, so we were at the cemetery.”

The answer came in bits and pieces: “Levite.”

“They were the carriers of water in the ancient Temple and thus were symbolized by the pitcher. It was the pitcher of water used to wash the hands of the Cohanim.”

“Thus the bowl...”

“Here's a great reference doc...”

So, you see, that’s how we came to laugh so uncontrollably at your grave. In addition to our apology, though, I think we owe you our thanks, too, for bringing us a bit of joy on a gray, sullen Saturday.

I suspect we’ll visit your gravestone again whenever we’re in the cemetery and that it always will bring us a sweet memory. In the meantime, rest in peace Nathan Finkelstein.

~ JanetheWriter

Sunday, October 7, 2018

5 Things I Wondered About Today

Admittedly, these are first world issues, but nonetheless, I spent time wondering about them today (perhaps to avoid wondering about weightier issues such as, oh, I don't know, maybe the future of this country??):

1. What is a Universal Life Minister and why are they so popular as wedding officiants?

2. When is my landlord going to reappear from amongst the ranks of the missing to repair or replace the window unit air conditioner in my living room, which has now been on the fritz (when it should be on "frenzy," as my mother would say!) for nearly two weeks? (Although the calendar says it's October, both the thermometer and the hygrometer say it's July.)

3. Speaking of the calendar and the weather, now that we’re praying weekly for wind and rain (mashiv haruach umorid hagashem), when will we see the first flakes of snow? And when will Jim Cantore be out there in the thundersnow ? Tomorrow?

4. Now that I’ve finished Bellevue: Three Centuries of Medicine and Mayhem at America's Most Storied Hospital, what should I read next?

5. Am I the only person whose Facebook account hasn’t been hacked?

Happy Sunday, folks. Have a good week!

Sunday, September 23, 2018

Letter to a Nutritionist...But Not Mine

Dear Nutritionist,

When I canceled my appointment with you for next week, the receptionist asked if I wanted to reschedule. I’d rather tell you why I canceled in the first place.

Like countless other New Yorkers, I’m a smart, busy, reasonable person, who tries to make healthy food choices, exercises regularly, and works long hours in a stressful job. I live on a tight budget and don’t particularly enjoy cooking; nonetheless, I rarely order in and eat out only about once or twice a week with friends or family.

You met me once. In the time we were together, you took my body measurements and my weight. After an hour, I left with a second appointment that was further into the future than the two weeks you recommended. The upcoming High Holidays were certainly a factor, but your availability only during business hours on Tuesdays played a role as well.

I left, too, with these takeaways that you had plunked down in what felt like an inflexible, admonishing, and scolding way:
1. Eat organic.
2. Do not microwave vegetables; steam them.
3. Eat no carbs.
4. Eat very little dairy.
5. Keep a food diary.

As I said, I’m a reasonable person and since you have no idea how much or what type of dairy I eat (there’s a big difference between a pint of Haagen Dazs ice cream and a scoop of fat free Fage Greek yogurt), it’s not really practical for you to tell me in a first meeting to eat very little dairy.

The same is true of carbs, even though I am trying to lower my blood sugar. Nonetheless, as with the dairy, you have no idea about my intake of carbs or that I’ve worked hard during the last several months to cut back drastically on them. Even so, last week I wasn’t willing to skip a small piece of homemade round challah and a drizzle of honey to mark this season of new beginnings.

Ironically (or perhaps not), my meeting with you did absolutely nothing to inspire me to be my best(-eating) self in the New Year. Instead, it left me frustrated, angry, and overwhelmed – definitely not the person I want to be – and so it is that I won’t be scheduling another appointment to see you anytime soon.

Yes, I know it’s hard to lose weight. I’m willing to give it my best shot, but on my terms: continued smart choices and an “everything in moderation” outlook that is much more suitable for a real person in the real world.

Sincerely yours,
 ~ JanetheWriter.

Friday, August 31, 2018

7 Random Reminders from a Funeral During Elul

  1. Late summer sunshine on the Hudson is spectacular. When you look, you can find the beauty in creation. It’s out there.
  2. Karma, for lack of a better word, exists. What you put out into the universe comes back to you.
  3. Get behind a cause you believe in to help repair our broken world.
  4. The people in your orbit matter. Surround yourself with an ever-widening circle of those who bring you joy and help you laugh, cope, and get the most from this life.
  5. A long, loving relationship is a holy thing. Those who have one truly are blessed.
  6. Kudos to whomever developed Jewish mourning rituals. The thud of dirt on a casket stings, but laughter, hugs, and sweet memories salve the wound a little bit each day. Don't pick at the scab.
  7. Healthy eating is a noble goal, but when grilled cheese is (the only thing) on the menu, eat up. Sometimes you have to feed your body and your soul. The hell with the carbs.

Saturday, August 11, 2018

5 Reasons I’m Not Participating in #BlogElul This Year

Dear #BlogElul,

I’m glad you’re here and I hope a lot of people blog for you this year, but I’m not going to be one of them. As I told someone who asked me recently about doing a freelance editing job that she needed turned around quickly, “I am on overload...and I can't take on one more thing.”

I #BloggedElul (#BlogEluled? #BlogElulled?) consistently and completely in 2016 and 2017 and it was a meaningful exercise each time, but here are five reasons I’ve opted not to participate this year.
  1. When Rosh HaShanah arrives, I’m exhausted. I spend the weeks leading up to the High Holidays writing and editing countless blog posts and lots of web content for Add in #BlogElul and by the time the first of Tishrei arrives, I have little, if any, spiritual bandwidth left to do the work the holidays require. 

  2. I need more downtime. Blogging well (and the over achiever in me likes to think my posts are well done) takes lots of thought and time. Ironically, I wrote this in a #BlogElul post in 2016: “As we begin a new week – the last one of 5776 – may I begin to see with my 5777 eyes: less judgmentally, more compassionately, less harshly, and more patiently. Even as my eyesight and my heart soften, may I also begin to say “no,” so there can be time in my life for me – to read, write, think, or just be alone with my soul.”

  3. I am tired of multi-tasking. Often, I eat a meal at the computer; flit back and forth between paying bills and reading emails; start a task, get distracted (usually by technology), and only return to it hours later. On video calls at work, too, I'm baffled by people's ability to listen to whomever is speaking, ask questions, offer opinions, keep abreast of (and participate in) side conversations in the chat box, and read related articles, websites, and more, the links to which others constantly share. I. Can't. Do. It. All. I want enough time to focus on one thing at a time, including #BlogElul –– and to do it without distractions and without interruptions.

  4. One a.m. is not a suitable bedtime. Two nights each week I work out with a trainer. It is simultaneously grounding, invigorating, and physically exhausting. By the time I shower, eat, and take care of whatever else demands attention, it is often much later than I’d like. I’ve been striving for lights-out at 10:30 p.m. on those nights – and on the nights in between – and I'd like to hit that mark at least a few times a week.

  5. “Let’s get together soon” has become an empty promise. Recently, I’ve run into a few neighbors and emailed with some former colleagues whose company I enjoy. We chat or email briefly before the conversation inevitably ends with “Let’s get together soon.” Sadly, it rarely happens. I want time and energy to fulfill those empty promises -- and others -- with face-to-face companionship.
I think the bottom line here is that I need and want to slow down, to stop burning the candle at both ends, to focus – one at a time (and in a non-selfish way) – on people and activities I know will be fulfilling and meaningful to me, and perhaps even have time to discover some new ones as well. I believe that doing so will lead to less frustration, fewer empty promises, more sleep, and more enjoyment of simple pleasures, all of which will help me be my best self in 5779.

Shana tova , #BlogElul… see you next year,
~ JanetheWriter

Inspired by Ima on (and off) the Bima, this #BlogElul post may be the only one I write 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.

Friday, June 29, 2018

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.

Saturday, May 19, 2018

Honor Thy Father and Mother

We are a people in whom the past endures,
in whom the present in inconceivable without moments gone by.
The Exodus lasted a moment, a moment enduring forever.
What happened once upon a time happens all the time.
-- Mishkan T’filah
At tonight’s Shavuot learning program at Temple Shaaray Tefila, the 10 Commandments were taught by 10 different teachers, each of whom had 10 minutes to make a presentation about one of the commandments. Cantor Todd Kipnis, in teaching about the fourth commandment – Honor thy father and mother – shared an essay his mother wrote about honoring her mother at a time in their lives when their roles largely were reversed. The daughter became the mother; the mother became the daughter.

His mother’s essay provoked in me a flood of tears, not only because of what she wrote and how she wrote it, but also because of the memories it evoked of how our family honored my mother eight years ago on this exact date, May 19, 2010.

It was on that date that I wrote two entries on my mother’s CaringBridge site. First, this one:
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.”
Later that same day, having accompanied her (thanks to two kind, young women paramedics) on the ride from the hospital in New Brunswick to the hospice facility in Edison, I wrote this penultimate journal entry:
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.
I know that we honored my mother well on that day. I like to think, too, that excepting for a few teenage temper tantrums, I honored her well throughout all her days, and that for the rest of my own days, I will continue to honor her memory and her well-lived life.

Tuesday, May 15, 2018

Happy Mother's Day, The Mums

Dear The Mums,

A belated happy Mother’s Day.

I didn’t get to finish this letter on Sunday because I spent the early part of the day cleaning my apartment. I know…I can hear your emphatic “Feh” loud and clear, but the windows were filthy and, as Amy would have said in her younger days, the garbage cans were “overfloating.”

In the midst of cleaning the windows, though, I received the sweetest text from Debbie Bravo, who, eight years ago at this season, was with us night and day. She wrote: “Good morning. Thinking of you on this day. I know it is always a hard day. I always think of your mom at this time of year because I know how much she loved that climb to Sinai.”

Here’s what I wrote back to her: “You are so sweet. Thank you. It was such a hard week for other reasons that the lead up to Mother’s Day sort of took a back seat. It did occur to me, though, that I can imagine my mom now taking up “Talmud Study for Beginners” in Olam haBa.

You probably already know that 10 days ago Aaron Panken was tragically killed when a small plane he was piloting crashed shortly after take-off. As I’m sure you can imagine, the entire Reform world is stunned. Even now, with the funeral and shiva over, it’s going to take a long time for the reality to sink in – most of all for his family, but for everyone else too. So, a new Talmud teacher is coming to Olam haBa – and maybe he’s already there, settling in, arranging some books in his office, putting together a syllabus. If he offers a class for lay people, I know you’ll be first in line to sign up.

In the late afternoon I went to Amy’s because she had to teach at a bankers’ meeting that night, so I stayed with Ian. At 15, he could have stayed by himself for the few hours she was gone, but it’s always more fun for both of us when I “babysit.” We brought in pizza for dinner and then I helped him with a history essay about British imperialism in India. (Sad to say, the kid got your feet, but definitely didn’t inherit any of your writing genes.) Certainly not a traditional Mother’s Day, but also not bad for a rainy Sunday.

In other news, tomorrow night I’m going to get all gussied up to go – for the first time – to Shaaray Tefila’s annual gala. The ticket cost me more than half a day’s worth of freelance work, but the honoree is someone who has been incredibly kind and caring since the day I met her, just five weeks after you died. You’d like Liz – she’s honest, forthright, studies Torah, has a lovely singing voice and a heart of gold, and is a lifelong member of the synagogue.

That’s about it from here for this week. I hope you had a good Mother’s Day and please don’t forget to sign up for a Talmud class. Maybe there will be one in time for Shavuot...that would be perfect for you!

Miss you….xoxo,
~ Boo!

P.S. It’s going to be near 90 degrees today and I’m schvitzing like it’s July. My turn to say “Feh,” a word that, thanks to you, increasingly is a part of my vocabulary!

Monday, May 7, 2018

Yes, It’s ThatTime of Year Again


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.

Friday, April 20, 2018

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.

Sunday, April 1, 2018

#BlogExodus: Praise

Because there are no rules for #BlogExodus and because I often need time to process and percolate my thoughts, I believe it’s okay to write this last entry now, on the second day of Passover. If so, I wish to offer praise:

To the people who welcomed me into their homes over the last two nights for seder, in one instance for the umpteenth time, in another for the first time. In both cases, all of us who gathered, benefitted from gracious and generous hospitality, engaging company, wonderful food, lots of laughter, and the opportunity to retell the story of the exodus from Egypt, sharing and celebrating Jewish tradition together.

For growing and ever-intersecting and connecting circles of friends.

For musicians – cantors and professional singers – whose sweet voices enriched the journey from the narrowness of Mitzrayim.

For Rabbi Jim Rudin for his reminder that this year, 15 Nisan marked the 75 thanniversary of the Warsaw Ghetto Uprising, and also for pointing out the beautiful full moon as we headed back into the city, following the first seder.

For MetroNorth trains that run relatively on time.

For Elmo and for his knowing 13, so he could, as has become his own holiday tradition, help with Echad Mi Yodea.

For my friend, Pamela, and our new-ish holiday tradition that affirms our decisions to choose life and confirms that some of what makes Passover Passover has little to do with brisket, matzah, or Manischewitz.

For the blessing of memory that allows us to remember with love those who live in our hearts, even if they’re no longer physically with us around the table and for the power of that first bite of wet matzah spread with sweet, whipped butter to open floodgates to the past – and decades of Passover memories as sweet as the butter.

For Elijah and his enduring ability to keep hope alive – for whatever our hearts desire and for a more equitable and just world that is our responsibility to help build and create.

Chag sameach, friends!

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 .

Thursday, March 29, 2018

#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.

Sunday, March 25, 2018

#BlogExodus: Thank

Dear Alex,

I’ve experienced my fair share of “small Jewish world” stories – especially given that I work for Judaism’s Reform Movement – but nothing quite like what happened this week. So, I want to thank for being the catalyst that made the planets align in my world.

It started with your Facebook post:
"I am so grateful for all the Lafayette students I've worked with over the years. One of my favorites just stopped by my office and it was awesome to hear how well she is doing as a young professional in Chicago.
Shout-out to Laf alums who are my FB friends! Please comment with what year you graduated and what you are doing now."
I commented with this:
1985. Senior writer and editor at the Union for Reform Judaism, where I manage blog content and curate Ten Minutes of Torah, a featured blog post sent daily to a subscriber base of between 20,000 and 60,000 individuals.”
And then the conversation continued:
Alex: “Love it.”
Me: “And probably your ‘alumna of longest standing’ FB friend!”
Alex: “I think that honor actually belongs to Liza Roos Lucy!"
Liza: Class of '74 P '12 P '15”
Me: “Liza Roos Lucy win! :) Happy Friday!” 
Liza: “Jane E. Herman to be fair, I didn't know Alex from the time I was a student. I know Alex through my daughter, Elizabeth Lucy class of ’15 and because my cousin, Susan Katz is her friend.
Alex: “I think I am fortunate to know all of you!”
Me: “Liza Roos Lucy I don't know her from my student days either. I met her about five years ago when I spoke on campus as part of the Madame de Lafayette speaker series.”
This might have been the end of the conversation and the story, but for some reason, I went to Liza’s FB page to see a bit more about her and this is where the story gets a little, um, bizarre… because she’s from Honesdale, PA.

See, I have a longtime friend who is the once-a-month rabbi at historic Congregation Beth Israel, the Reform congregation in Honesdale. During the last few months, I’ve told him a few different stories, to which he’s always responded, “All roads lead to Honesdale.”

In fact, it seems they do. A while back, at a bus stop in New York City, a woman asked me about the boots I was wearing. We struck up a conversation while we waited, and I learned she has a home in Honesdale. When Gene Kelly had surgery a few months back, I saw on FB that he would be recovering at his parents’ house…in Honesdale.

And now this.

So, I sent this message and snippet of information from Liza’s FB page to my friend Elliott, who is not on FB:
Don't ask, but I'm in a FB conversation with a few people, and one of them has these "stats":
Studied at Lafayette College
Went to Wyoming Seminary Upper School
Went to Honesdale High School
Went to Wyoming Seminary Prep School
Lives in New Hope, Pennsylvania
From Honesdale, Pennsylvania
All roads… 
He responded immediately: “Liza!”
Me: “You know her???”'
Elliott: “She’s a very good friend and president of the congregation.”
Me: “OMG....I'm going back on FB...this is the best small Jewish world story. OK if I share that we had this convo?”
Elliott: “Sure.”
That’s when I went back to your post and wrote this to Liza: “When I saw that you're from Honesdale, I reported in to my friend, Elliott, with whom I echat nearly daily, and, alas, another great small Jewish world story is born...Honesdale, Elliott, Laf!”

Here's the rest of the conversation that took place on FB Messenger.
Liza: “Whoa! You are Elliott's friend! I am president of Beth Israel in Honesdale where Smitty was rabbi for 44 years and now Elliott.”
Me: “I know!! Small, small world! I work at the URJ, where he used to work...and we've been friends for 15 years!”
Liza: “Did you speak a few years ago at a genetic counselor event?”
Me: “In Honesdale? No. At Laf Coll... yes, as a Madame de Lafayette speaker. I am a BRCA mutation carrier and very active in the hereditary cancer community, committed to raising awareness about these mutations, especially in the Ashkenazi Jewish community.”
Liza went on to tell me about her daughter, Alex, also a Laf Coll alumna and a genetic counselor specializing in breast cancer. She said that when Alex lived here in NYC, she and I spoke at a hereditary cancer event and according to Liza, “she will remember you.”

In the meantime, I was having a simultaneous conversation with Elliott…and anyone who knows me well knows that multi-tasking is not my forte.
Me: “Liza just asked me if I spoke at a genetic counselor event a few years back...the world is getting smaller by the minute!”
Elliott: “I had told her about you. Her daughter is a genetic counselor – specializing in breast cancer.”
A little while later, I connected on FB with Liza's daughter, Alex, who now lives in Philly, but we haven’t yet figured out at what event in NYC (or perhaps in Philly) we met.

Liza and I chatted a bit more before I had to get back to work, but I’m sure we’ll talk again – either on FB or perhaps even in person.

Sharing all this convoluted connectedness is not to demonstrate FB’s tremendous power of relationships, but really to thank you for expanding my Lafayette network, my genetic counselor/hereditary cancer network, and most of all, for giving me perhaps the best small Jewish world story ever!

Wishing you and your family a wonderful Easter,
~ Jane.

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.