What Angelina’s Op-Ed Didn’t Tell You

Kudos to Angelina Jolie for revealing her BRCA status to the world and for undergoing a prophylactic bilateral mastectomy that may well have saved her life. With that one op-ed, she single-handedly did more to promote awareness about BRCA gene mutations than all her BRCA buddies—myself included—could collectively do in a lifetime.

I’m not quite so appreciative, however, of the media frenzy that has surrounded Jolie’s announcement. Despite seemingly endless coverage (she is, after all, Angelina Jolie), the dearth of information about the nuances of these mutations and the associated cancer risks is exceedingly disconcerting--especially to those of us who have based our own healthcare and surgical decisions on these very nuances.

With that in mind, I offer you these BRCA basics:

1. Every human being has BRCA (an acronym for BReast CAncer) genes. Healthy BRCA genes—without mutations—function as tumor suppressors, helping the body fight off rapid and unregulated cell growth.  Women with a mutation in one of their BRCA genes have a significant risk of developing breast and/or ovarian cancer within their lifetime—often at an earlier age than those in the general population. BRCA+ men are at increased risk of developing breast and prostate cancer.  Like women, men can inherit a mutated gene from their father or their mother and, also like women, there is a 50% chance they’ll pass the mutation along to their children—both sons and daughters.
2. Although a woman’s risk of developing breast and/or ovarian cancer varies based on her personal family history and the specific gene mutation she carries (there are hundreds of different BRCA mutations), the risk of breast cancer can be as high as 87% (vs.12% in the general population) and as high as 50% (vs.1.5% in the general population) for ovarian cancer.
3. BRCA mutations also are associated with increased risk of pancreatic cancer and melanoma, as well as with fallopian tube and primary peritoneal cancer (cancer in the lining of the abdomen).
4. Unlike some genetic diseases, such as Tay Sachs, in which individuals must inherit two “recessive” genes—one from their mother (who is a carrier) and one from their father (who also is a carrier)—in order to develop a particular disease, BRCA gene mutations are “dominant.”   Inheriting just one BRCA gene mutation puts an individual at increased risk of developing cancer at some point during his or her lifetime.
5. Some people with BRCA mutations will never develop cancer—some because of luck of the draw and others because they elect to take chemoprevention drugs or to have prophylactic surgeries to remove their breasts and/or ovaries, greatly minimizing their risks. For those who do develop cancer, it can often be detected early because of the increased surveillance these individuals undertake.
6. At a rate of approximately one in 500-800, the prevalence of BRCA mutations in the general population is exceedingly low. Within the Ashkenazi Jewish population, approximately one in every 40 people (2.5% of the population) is a carrier, and most carriers are not aware of their BRCA status.
7. Approximately ninety to 95% of breast cancers are “sporadic” and are not caused by BRCA mutations. Likewise, 85% to 95% of ovarian cancers are not caused by BRCA mutations.
8. BRCA testing is not appropriate for broad use within the general population and should only be undertaken in consultation with a genetic counselor, a professional trained to assess individuals’ personal cancer risks based on numerous factors, and to help determine appropriate risk management strategies.The National Society of Genetic Counselors can help you find genetic professionals in your area.
9. It is important to know the possible signs of hereditary cancers, which include a family member with: ovarian or fallopian tube cancer at any age, breast cancer before age 50, breast cancer in both breasts at any age, both breast and ovarian cancer, triple negative breast cancer, or male breast cancer.
10. Other signs of hereditary breast cancer include more than one relative on the same side of the family with any of these cancers: breast cancer, ovarian or fallopian tube cancer, prostate cancer, or pancreatic cancer.

As Jolie rightly points out, women have options when it comes to managing their BRCA risks. Like her, I was empowered to make risk management choices that were appropriate for me, but not before I had fully educated myself about my own BRCA status and the specific choices available to me. Also like Jolie, I am exceedingly satisfied with my decisions and the fact that the threat of neither breast nor ovarian cancer still hangs over me. Nonetheless, even now, nearly two years after my mastectomy, physical and emotional scars remain. And, although they fade a little bit each day, I’m not sure they’ll ever disappear completely.

For more information about hereditary breast and ovarian cancer, contact Facing Our Risk of Cancer Empowered (FORCE), a national non-profit organization solely devoted to providing resources and support to the hereditary cancer community.

Let the #Torah Tweets Begin

For a people with just one God, we Jews sure do a lot of counting. 

Three patriarchs, four matriarchs, six days of creation, eight nights of Hanukkah, 12 tribes, 40 years in the desert, 70 years in a life--80 if we’re really robust.  You get the picture…

In less than 10 days, we’ll reach Day #49 in the counting we’ve been doing since the second night of Passover.  Known as “counting the omer,” (an omer was a measure of barley used in ancient times for sacrificial purposes) we Jews literally count each and every day for seven consecutive weeks--from the first day of Passover all the way through to Shavuot, the pilgrimage festival that commemorates the giving and receiving of Torah atop Mt. Sinai.

On May 14, which is erev Shavuot, we will have finished counting the omer and (some—and hopefully many—of us) will begin “tweeting #Torah.”  Begun by Reconstructionist Rabbi Shai Gluskin in 2009, tweeting #Torah was designed to bring Torah to as many people as possible with a secondary goal to see #Torah trend in the top 10 on Twitter during the day.

Using hootsuite, tweetdeck or other social media tools, it’s easy to schedule tweets for the overnight hours—especially if you start now, lining up a few each day—and, later, to watch the flurry of #Torah tweets and retweets scroll by on the screen.

Here are a few of the #Torah tweets I’ve contributed to this effort in past years:

So many Jewish books open on my desk in prep for Tweet #Torah to the Top that I look like a real yeshiva bucher.

Behold, how wonderful it is for people to dwell together in unity. #Torah

Mah Tovu: How fair are your tents, O Jacob, your dwellings, O Israel. #Torah

Blessed are you Eternal our God, Sovereign of the universe, who has made me a Jew. #Torah

Thus the Eternal blessed the seventh day and called it holy. #Torah

Never again did there arise in Israel a prophet like Moses--whom the Lord singled out, face to face. #Torah

I’m certainly no Pollyanna, but Tweet #Torah is fun, easy, inclusive, and, most of all, does, indeed, bring people to #Torah and #Torah to people.

I hope you’ll join us in this year’s effort.  Although we can't count on it, wouldn't it be great if #Torah was a top 10 trend?!

Shabbat Kedoshim: A Top 10 List

Photo:  www.judaicaneedlepoint.com

10.  Waiting for a bus for almost 20 minutes and still making it to services before Ma Tovu.

9.  Worshiping with my minyan community (including Dr. Tamara Eshkenazi, who is visiting on the east coast) -- despite the exceedingly noisy and wall-shaking construction in the street in front of Temple Shaaray Tefila.

8.  Singing Psalm 150 using Leonard Cohen's haunting melody.

7.  Hearing the Haftarah chanted and reading it round-robin style--as is our minhag--in English.

6.  An especially chewy cinnamon-raisin bagel during Torah study.

5.  Interesting, engaging discussion about talebearers, lashon hara employment references and sins of omission vs. sins of commission.

4.  A refreshing Dunkin' coconut iced coffee on the way home--with lots of ice and just the right amount of milk.

3.  Time to read today's newspaper leisurely.

2.  Time to continue to plow through Les Miserables and find out more about Fantine, Cosette and Monsieur Madeleine, who I think is a.k.a. Jean Valjean, but being only 175 pages into the tale, I'm not quite sure yet.  No spoilers, please...

1.  Time, inspiration and inclination to write and post this list before a little Shabbat menucha (Sabbath rest)!

Shabbat shalom!

No April 2 Redux

Dear The Mums,

Today is April 2.  Three years ago it was a Friday.  We were three days into counting the omer and Barbara Kline Shapiro's father had just died. His funeral was that morning and Daddy went, which meant that I was at the hospital by myself when Dr. S. told me, using his less-than-perfect bedside manner, that the metastatic breast cancer that had resulted in a pelvic fracture that was causing you such excruciating pain was all over your body--in your bones, in your liver and in your lungs.  Of course you were there, too, but the Fentanyl made you loopy and you sort of drifted in and out.  Lucky for me, Elliott and Shira showed up sometime during that morning and then I wasn't alone anymore.

Interestingly, on this year's April 2, I attended the first-ever benefit screening of "Decoding Annie Parker," a not-yet-released feature film about the discovery of the BRCA1 gene. The film traces the life of Annie Parker, who lost her mother and her sister to breast cancer before she herself battled both breast and ovarian cancer.  Even as Annie fought these diseases, convinced there was a genetic link within her family,  Dr. Mary-Claire King and her research team were working feverishly to connect the dots within families like Annie's, where breast cancer is present in more than one generation. Of course, in the end, they did just that and, with their discovery of the BRCA1 gene, made one of the most significant cancer breakthroughs of our time.

For many of us in the audience tonight, Annie Parker's story is our story.  It's my story and, although you didn't ever know it, it's your story, too. I'm indebted to Annie Parker for allowing it to be told and to Steve Bernstein, the producer, for telling it so well.  I am hopeful, too, that if enough people see Annie's story, fewer families will ever have to endure an April 2 like the one we endured just a few short years ago.

Miss you....xoxo,
~ Boo!

#BlogExodus: Changing

It's relatively easy to change this:

Into this:

It's much harder to change attitudes, jobs and long-time ways of doing things, especially if that change takes us out of our comfort zone.

It was that way for the Israelites--and it's still that way for us.

For even as they fled slavery in Egypt and wandered in the desert for 40 years (kvetching all the while), they were becoming a people--a strong people that endures today.

It's a good lesson to keep in mind:  change is hard, and often makes us uncomfortable.  At the same time, it can make us stronger, better people.

So, even if we want to kvetch about it, this is a good season to step gently out of our comfort zone into a new attitude, a new job or a new way of doing things.

Who knows...making a change could land you (or me) smack in the middle of our own personal Promised Land!

Inspired by Ima on (and off) the Bima, this post is one in a series marking the days of the Hebrew month of Nisan leading up to Passover 5773.

#BlogExodus: Redeeming

Dear The Mums,

In just a few days, it'll be the season of our redemption and so it's time for my springtime note to bring you up to speed.  I know you probably already know a lot of what I'm about to tell you, but just in case you don't, I'll do my best to fill you in.  As an aside, although the calendar says it's spring, the meteorologists are saying otherwise.  In fact, it's supposed to snow on Monday, making a further mess of what will already be messy "Yid-lock" as people try to make it to their seders on time.  Do you think you can do something about that?!

But I digress....here's the update:

At the end of February, Aunt Claire moved out to an Erickson community in Novi, MI, so she can be close to Marc, Susan and the kids, who moved to Perrysburg, OH, during the fall so Marc could take a new job. Daddy and I are planning to go out there in November for Carolyn's bat mitzvah, but that still makes this the first Passover in a long, long time that doesn't include Aunt Claire at our seder table.

And, in fact, we're not actually having a seder.  You know that Passover has never been Daddy's or Amy's thing and with Ian in Florida at a spring break baseball camp with John, our "seder" on Monday night will look more like a family dinner at Amy's house.  She invited her friend Christine, and Aunt Bea and Barbara also might come--if Blossom and Ed don't go to Aunt Bea's.  Even though it's not going to be a full-blown seder, Amy asked me to bring charoset, so I'll spend part of tomorrow chopping apples and nuts, and putting it all together. I hope she'll do yellow tulips on the table, but I'll probably bring a bunch with me, just to be sure.

Tuesday night, however, I'll be at a full-blown seder, as I always am on the second night of Passover.  This year especially, I am grateful for the opportunity to perform all the rituals--dinner in the RA Haggadah doesn't happen until somewhere around page 88, I think--and for the friends and laughter that will abound that night.  

I'm not quite sure how things work where you are, but I do hope that you've run into Mrs. Steinberg and that the two of you have been busy catching up with each other and shmying around in Pier 1, HomeGoods and at flea markets.  Please keep your eye out, too, for a young woman whom I think you'll really like.  Although Elissa Froman and I never met in person, we had a few email exchanges and a number of mutual friends, which actually wasn't hard since it seems that so many people were friends with Elissa.  She was a RAC LA before going to work for the National Council of Jewish Women, where she was a deeply dedicated advocate for social and economic justice, managing a portfolio that included civil rights, religion/state separation, international issues and judicial nominations. She had plans to go to rabbinical school and had been accepted at HUC, but after years of fighting Hodgkin's lymphoma, she died yesterday at 29.  Today Facebook is overflowing with countless pictures of Elissa with her friends, as well as loving sentiments written by those same broken-hearted people.  I've included a picture of her here so you'll know her if you see her. My hunch is that you and she will hit it off. 

There's lots more to tell, but it's late and so the rest will have to wait for another letter.  In the meantime though, although Passover will never be an easy holiday for any of us, I hope you know that these notes to you help, in some small way, to redeem my heart from the grip of sadness that comes from missing you.

Chag Pesach sameach, The Mums...xoxo,

~ Boo!

Inspired by Ima on (and off) the Bima, this post is one in a series marking the days of the Hebrew month of Nisan leading up to Passover 5773.

#BlogExodus: Counting

Earlier this week, when the total reached 50, I stopped counting the days of my Jubilee year.

In another few days, I'll stop counting the days of #BlogExodus and #Exodusgram.

Just as they end, though, we'll begin counting the omer.

Hmm...is that a purple tinge on my skin?!

Inspired by Ima on (and off) the Bima, this post is one in a series marking the days of the Hebrew month of Nisan leading up to Passover 5773.