Showing posts with label hereditary cancer. Show all posts
Showing posts with label hereditary cancer. Show all posts

Thursday, July 8, 2021

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.

Sunday, September 10, 2017

#BlogElul 5777: Fill

Here are nine reasons to recognize and remember my cup is filled, even (and especially) on the days it doesn’t feel as though it runneth over.

  1. A longtime job with generous health and other benefits.
  2. Longtime friends from all parts of my life.
  3. Family that still enjoys being together – even as we drive each other nuts by being ourselves.
  4. Coffee, including a Dunkin’ Donuts gift card that gets refilled for me from time to time.
  5. More books than I can hope to finish anytime soon.
  6. A synagogue community and weekly services that ground me. (They’d understand my desire to disappear right about now and resurface just in time to shake the lulav and breathe in the sweet scent of the etrog.)
  7. A newfound love of learning to lift weights and box (yes, you read that correctly) – activities that also ground me.
  8. A more than adequate roof over my head and a home that is a quiet refuge from the noise and other challenges of NYC living.
  9. Knowledge of a genetic flaw and the wherewithal to act in a timely way to ensure it didn’t take my life, as well as a willingness and ability to use those experiences to support others who are on a similar path behind me.

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 precede the Jewish High Holidays and traditionally serve as a time of reflection and spiritual preparation for the new year.

Friday, June 16, 2017

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.

Wednesday, April 5, 2017

#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

$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! 

Thursday, September 29, 2016

#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.

Sunday, May 1, 2016

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.

Thursday, February 5, 2015

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?