October’s Arrived, So I’m on My Soapbox

Credit: benefits.com

I didn’t know how I was going to write about Breast Cancer Awareness Month this year, and then I saw this message on Facebook, posted by a guy I knew in high school:

Lost my mother, grandmother (and both her sisters) and great grandmother to breast cancer. I get checked every year by my doctor.

#getchecked

#protectthetattas

I immediately sent him a private message: “Have you had genetic testing for BRCA and other mutations?”

Guy: “My brother has since he had daughters. Was negative. But he and I are vastly diff makeups. He’s def from my father’s DNA. And I’m sure I’m more my mother’s. Never got tested since I only had boys.”

I couldn’t have asked for a better set-up!

Me: “You should consider consulting with a genetic counselor because men, not only women, can pass mutations on to their children. So, if you carry a hereditary cancer mutation, each of your sons has a 50% chance of carrying it—and a 50% chance of passing it on to their own kids, both sons and daughters. Happy to discuss further if that would be helpful. I’ve learned all of this the hard way, and I work hard to make sure other families don’t have the experiences that mine did. Also, some of these mutations are much more prevalent among Ashkenazi Jews than they are in the general population. I’ll also butt out if you think this is none of my business.” 

Guy: “I appreciate it! I will pursue it further.”

Me: “Excellent! Please keep me posted.”  

If, in fact, Guy or either of his sons turns out to be a BRCA mutation carrier (pfth, pfth, pfth), they’re at increased risk of male breast cancer, prostate cancer, pancreatic cancer, and melanoma. So, I hope he follows through, gets genetic counseling, and does whatever might be necessary to protect his own health and that of his sons.

To learn more about hereditary cancer, visit FORCE: Facing Our Risk of Cancer Empowered, a national non-profit organization solely devoted to providing resources and support to the hereditary cancer community. To find a genetic counselor in your area, visit the National Society of Genetic Counselors. Visit JScreen.org to learn how you can test for hereditary cancer mutations from home and consult with a genetic counselor about the results.

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.

My Quo Vadis Will Tell Me Where I'm Going

A few years ago, I jumped on the Bullet Journal bandwagon, but the system never really worked for me. As much as I loved the idea, and the opportunity to purchase a brand new Leuchtturm notebook full of sleek fountain-pen friendly paper, I quickly learned that I work best with a paper calendar that shows a full week at a time and in which I can mark meetings, one-time appointments, birthdays, holidays, and yahrzeits.

This year, back in October, I entered this giveaway and won a 2018 Quo Vadis Hebdo planner with a Rose Grenadine cover (in honor of breast cancer awareness month):

Thank you for entering the Quo Vadis Rose Grenadine planners giveaway:

Congratulations, you are one of the winners! Your new planner will be sent to you at the address you provided in your entry.

We’d love your feedback on your planner. Just a few sentences about what you like about the planner, and what you would change if you could, would be great. We would also love to know how you use your planner. Please email comments to Laurie (at) Exaclair (dot) com. We appreciate any feedback you can give us.

Thanks again for participating, and I hope you enjoy your new planner!

Have a great weekend,
Laurie

Laurie Huff
laurie@exaclair.com
www.QuoVadisBlog.com
www.RhodiaDrive.com
Instagram @quovadisplanner

A brief exchange with Laurie Huff followed:

Hi, Laurie,

Thanks...you made my day – not only because I was just starting to think about a new planner for 2018, but also because my family has been significantly affected by breast cancer. As a BRCA gene mutation carrier, I'm doing all I can not only to protect my own health, but also to raise awareness about these mutations and what they mean for families in which they are present.

Thanks again...have a great weekend!
~ Jane.

And, finally, this:

You are very welcome, Jane, and thank you for sharing how your family has been affected by breast cancer. I wish you good health and good luck.

I hope you enjoy your new planner and that you get to write lots of good things in it all year!

Laurie
Laurie Huff
laurie@exaclair.com
www.QuoVadisBlog.com
www.RhodiaDrive.com
Instagram @quovadisplanner

Recently I started to fill my new Hebdo and discovered some terrific features I will appreciate throughout the year:

• Fountain pen friendly paper, like all Quo Vadis planners
• Monthly layouts for January to December 2018
• A full week (starting with Monday) in each two-page spread
• Plenty of room to record meetings, appointments, and the like, not only on weekdays, but also on Saturday and Sunday
• Blank lines at the bottom of each page of the spread for miscellaneous information and what-nots
• World maps, time zones, and 2017, 2018, and 2019 grid calendars

Thus far, there are only a few things that seem to be missing, but their addition would bump the Hebdo and its Rose Grenadine cover from really great to perfect:

• An elastic closure to keep cards, notes, and miscellany from falling out 
• A back pocket, which is where I currently keep postage stamps, a few special notes from friends, and the all-important school photo of my nephew. 

In the meantime, I’m hopeful that I can figure out a work-around for each one, and am looking forward to a year in which my Quo Vadis keeps me organized and, indeed, answers the question “Where are you going?”

Where's JanetheWriter?

Today, I'm blogging over here, where I've put myself "out there" in an intensely personal way.  I'm a tad nervous about what may get posted in the comments section of the piece, but hopeful, too, that people will be respectful of the tough choices faced by those of us affected by hereditary breast and ovarian cancer (HBOC) -- and the decisions we make to preserve our health and save our own lives.

As I always say, if the post raises awareness about BRCA mutations in even one family where they weren't considered before, my "out-there-ness" will have been worth the effort.  For more information about these genetic defects, visit the FORCE website or be in touch with me directly.

Guess What? We're One of Those Families

Dear The Mums,

I can't believe that I haven't written to you since June, when Ian graduated from P.S. 41.  He's already been at Lab Middle School for nearly a month and even though it's going to be close to 80 degrees tomorrow in New York City, today is October 1.  Breast cancer awareness month is upon us, the world suddenly is awash in pink, and with the color adorning everything from yogurt lids to coffee cups, tee-shirts, and football helmets comes an emotional roller coaster of memory, and yes, many "what ifs," a few of which nagged at me last night.

Barbara Walters moderated a BRCA awareness symposium at Central Synagogue that was geared specifically for the Jewish community, where the incidence of BRCA gene mutations is 10 times greater than in the general population.  (Too much in-breeding in the shtetl, I always say.)  The event was the outgrowth of a High Holiday awareness campaign during which posters with BRCA information were sent to every Reform and Conservative congregation in the country in the hopes that they'd be displayed in lobbies and restrooms where they could be seen and read by worshipers throughout the High Holiday season.

Last night's panel featured four physician-researchers from top-notch institutions, each of whom has devoted his or her studies and clinical practice to breast and/or ovarian cancer and thus is an expert in the ins and outs of hereditary breast and ovarian cancer syndrome, which often results because of a BRCA mutation within a family:

• Carmel Cohen, M.D., Professor of Obstetrics, Gynecology and Reproductive Science, Mt. Sinai School of Medicine
• Susan Domchek, M.D., Basser Professor in Oncology, Abramson Cancer Center, University of Pennsylvania and Executive Director, Basser Research Center
• Noah Kauff, M.D., Director, Ovarian Cancer Screening and Prevention, Gynecology Service, Department of Surgery, Memorial-Sloan Kettering Cancer Center
• Julia Smith, M.D., Ph.D., Director, NYU Cancer Institute's Breast Cancer Screening and Prevention Program and and Director of the Lynne Cohen breast cancer preventive care program at NYU Langone Medical Center

Guess what, The Mums?  We're one of those families.  But, because Aunt Claire was diagnosed with breast cancer at about the same time that Mary-Claire King was discovering the BRCA1 gene and the havoc it can wreak in families where a mutation in the gene is passed from one generation to the next, it was too soon for her to be tested.  By the time a mammogram uncovered your triple negative breast cancer in 2008, you certainly should have been tested for the BRCA2 mutation we now know you carried.  Why your oncologist didn't suggest it, we'll never know...

In any event, there was a terrific turnout, and it looked as though most of the sanctuary was filled.  A classical rendition of Hinei Ma Tov opened the program, sung by a woman with a lovely voice, accompanied by violin and piano.  Peter Rubinstein, who's going to retire at the end of this year, I think, followed with a few remarks.  Two congregants from Central, Mindy Gray, who with her husband provided funding to establish the Basser Center in memory of her sister, Faith Basser, who died of ovarian cancer at 44, and Stacey Sager, a WABC-NY reporter who had both breast and ovarian cancer and isn't yet 50, also spoke briefly after which the panel discussion began.  Barbara Walters was a wonderful moderator, and there was even time at the end for two or three questions from the audience -- which we submitted on index cards.

From my perspective, the evening's most important take-aways were these:

• If you're Jewish and have relatives with breast and/or ovarian cancer, talk to your doctor about genetic counseling and testing.
• Don't be afraid to pursue genetic counseling and testing.  In most cases, insurance will cover the cost for individuals of Ashkenazi Jewish descent.  Knowledge is power and this power, as I know from my own experience with HBOC syndrome, saves lives.
• If you experience any of these symptoms for a period of a week or more, go see your doctor and ask him or her to prove that you don't have ovarian cancer: bloating, abdominal pain, a full feeling after eating, or urinary symptoms that include increased urgency or frequency.
• If you find yourself in need of medical professionals who are experts in the world of hereditary cancer syndrome, they're most often located at large medical facilities in urban settings. Go after them.

I do have one criticism of the event and it is this:  Although we heard from two women whose lives have been touched (albeit in different ways) by hereditary breast and ovarian cancer, this was an awareness event and there was no previvor voice among the speakers.  Such a voice, I believe, would have illustrated the perspective of someone who was able to use the knowledge gained through genetic counseling and testing to change intentionally the course of her own life or those of others in her family.  Just think about the possibilities had you or Amy or I attended an event like this six or eight or 10 years ago.  Who knows how having knowledge about BRCA mutations back then might have changed our family's experience...

So that's the latest from here, The Mums. It's late and I'm tired so I'm going to close for now, but I won't wait so long to write again.

Miss you...xoxo,
~ Boo!

P.S.  As a volunteer outreach coordinator for FORCE, which was one of  several participating organizations last night, I did a good bit of work to publicize the symposium, mostly on social media.  In doing so, I had a lot of email correspondence with Becca Mueller, a genetic counselor from the Basser Center, and it was great to meet her in person last night.  What's more, she put me in touch with the blogger for the Abramson Cancer Center blog, and I was able to write this post for them, which went live today.

Where's JanetheWriter's #BlogElul Post?

Today my #BlogElul essay is over on the blog associated with ReformJudaism.org.  I hope you'll click over there to read what I've got to say...it's a topic that's near and dear to my heart and if you think about it, you probably can guess what it is.  But don't just guess, take a click over there and see for yourself!

Stay tuned here for more #BlogElul in the coming days.