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

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.

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.