Our Voices: A Blog by Links, Callers and Volunteers

Celebrating National Ovarian Cancer Awareness Month

Cancer is huge (enormous, actually). It’s an adventure I wish I never had to take, but I’m living it in real time. Slowly, slowly, reality has set in. I have a chronic illness - ovarian cancer - that began in my fallopian tubes. I’ll be on and off chemo for the rest of my life. There. I said it. It’s my story. I own it.

Everyone has “stuff” and this is mine. I’m certainly not alone in this adventure. My family and friends have provided incredible support. Sharsheret, with its caring clinical staff, helpful website, and monthly group calls, reminds me that there are a lot of women out there just like me – taking this adventure, sharing stories, and providing comfort when some of us need it the most. I know that I can be connected to a peer supporter if I want one and I’ve volunteered to be one for other women. We’re all in this great big club that we’d rather not belong to, but we got “recruited” with the words, “You’ve got cancer.”

I’m doing all I can to find everything positive in this adventure. Laughing at what cancer offers up is actually therapeutic. Picking out hats, taking long naps, appreciating the kindness of friends and medical staff, figuring out how to make it look like I really do have eyebrows, and stuffing down hamburgers while justifying it because I’m anemic.  All part of the journey. 

I’ve decided cancer is like Whack-A-Mole, the arcade game where you whack a little critter over the head and another one pops up where you don’t expect it. Having a hysterectomy nearly two years ago was like putting the coin in the slot to start the game. The calliope music started and I was full of hope and optimism. I’m gonna beat this thing! Just like those little cynically grinning animals in the game, my cancer came out of nowhere. Whacked that first “critter” with a whole lot of chemo. Just like the game, another “mole” popped up – this time, a little one on my liver. Tried to whack it with chemo – oops – missed. Surgery for this guy – then we’ll whack it with more chemo.  Whew – this game is exhausting. 

But just like in the arcade, there are good times along the way. I’ve had stretches of great times – feeling wonderful and staying really active (more than ever and appreciating it more). What really matters is the present. How do I feel today? Great? Pretty good? Not lousy? Then I remind myself to enjoy the moment. You don’t know how many moles you will have to clobber, how long it will take, and how you’ll do it – but you will.

I can’t enjoy today if all I can think about is tomorrow and I can’t do anything about it anyway, so head up, smile on face, and enjoy all the great things life has to offer!

Finding Strength In My Local Community Program

On Monday, April 2nd 2012, I had the privilege of being asked to speak at a Sharsheret Supports Breast Cancer Symposium at the Ruth Rales Jewish Family Service in Delray Beach, Florida.  This one of a kind program was co-sponsored by 10 large companies and organizations, including our own, Sharsheret.

More than 150 community members attended the event and my breakout workshop on Sharsheret’s programs was well attended by women, young and old.  I was diagnosed with Stage 3 breast cancer in May of 2006, just 7 months after my mother passed away from breast cancer.  As a motivational speaker and powerful advocate of personal empowerment before, during, and after illness, I believe that it is important to teach other women to grab hold of their courage, step out on faith, and be the best they can be when faced with a diagnosis of breast cancer.  To be a Cancer Warrior.

Most of the women who attended this extraordinary program were breast cancer survivors.  I was overwhelmed by their stories.  In particular, one woman told us the story of her 23 year-old daughter who was diagnosed with stage 3 breast cancer and was BRCA Positive.  Thanks to Sharsheret, this young girl does not have to face her diagnosis alone.  She has an organization that can offer peer support, up to date information about her treatment, access to a genetic counselor, support for her caregivers, and a link to other healthcare professionals.

To say the least I am grateful for having won my battle, but also humbled and amazed at the fragility of life.  I am awed by the women before me who have also won this battle.  I celebrate the courage of those we have lost. 

I now understand that when you are faced with a challenge in life, you have a choice: to find the hero within, or to give up.  By choosing to uncover your own courage, strength, and determination, you become a role model for others.

Keeping The “Seder” In Your Life

In the Passover story, we learn that the Jewish people are told, from an authoritative and reliable source, that they are to leave Egypt immediately in order to save their lives. They quickly gather their families and belongings, including unleavened bread which had no time to rise, and race out of Egypt. There was seemingly no time to think or make plans. Thus, the journey toward well-being begins for the Jewish people.

The center of the Passover holiday is the Seder, the Hebrew word for order. I can not imagine that the Jewish people felt particularly orderly during this time. Yet, somehow, they managed.

Leave Egypt, receive the Torah, go to Israel – that was the order. As we know, even the best laid out plans, even under reliable authority, have twists and turns. The Jews had to deal with the Red Sea challenge and travel in the desert. There was the whole golden calf debacle. They regrouped, took a breath, and gained wisdom, as they received the Torah. And eventually, they reached the land of Israel.    

The journey is similar when diagnosed with an illness. The doctor tells you that you have cancer, which catapults you immediately into action mode. You may be scrambling to make phone calls, set up appointments, and make logistical arrangements.

Surgery, treatment, then survivorship. That’s the seder – that’s the order.  For many, there are unexpected occurrences such as infections post-surgery, changing the medication regimen, needing to choose a different reconstruction option, or perhaps a recurrence. The lesson we learn from the Jewish people is that as important as it is to have order, allow for unexpected challenges. Take moments along the journey to self-reflect and to gain wisdom. Remember that you may second guess yourself.  Trust your treatment team, trust your support system, and most importantly, trust yourselves. You are resilient. You will find your way.

Taking Action As A Community

The past seven years since I was first diagnosed with breast cancer have been life changing for me and for my family. I am grateful for the wonderful medical and personal care I received. However, I can’t bear to think that my daughters and the mothers, daughters, and sisters of others, would have to go through what I have been through. I don’t want them to be treated. I want them to never have cancer in the first place.  For this reason, my husband Tom and I established the John Fetting Fund for Breast Cancer Prevention at Johns Hopkins to support medical research on preventing breast cancer. 

Recently, I visited the Sharsheret office with my daughter Carly. I am very impressed with the organization, its energy, and personal connection. We enjoyed learning about Have The TalkTM, a new campaign to encourage students to ask their parents about their family medical history.  Passover, which is just around the corner, is the perfect time when families will be together and can talk about important family issues.  I urge you to make assembling a family medical history a priority for your family.

My hope is that when we get more Jewish people focused on being stakeholders, we will be able to accomplish so much in many areas.  We need Jewish people to know their family medical histories, to deal with the facts when they get tested, and we need them to stop thinking of breast cancer as being something people have or don't have.  Our community has breast cancer, not just the individuals in it, and not just the women.  When the mother is sick, the whole family is not well.  We have to remain vigilant with monitoring and we need to be vigilant in advocating for intelligent decision-making on health issues.  This attention cannot stop after the first round of surgery and medical treatment.  We need to stay focused for our own benefit and we need to protect future generations.

Our Jewish community is uniquely poised to use our substantial resources to make things happen when we know we have a big problem. We do it for Israel, we do it with the other innovative programs of our Jewish charities.  We need to pool our individual, foundation, and corporate resources to address this health crisis of breast cancer that is imperiling Jewish families and our entire community. If we make it a priority, we will win this battle. The time is right for us to give the medical community the resources it needs to focus on preventing breast cancer.

To learn more about the important research of the John Fetting Fund for Breast Cancer Prevention at Johns Hopkins, go to www.fettingfund.org.  If you would like to see a video of my personal story and my reasons for devoting my energies to preventing breast cancer, go to http://www.youtube.com/watch?v=WW0RfkYWPZ8&feature=youtu.be  or write to me at leslie@thinkbrighter.org.

My Cancer Journey Led Me To Sharsheret

Among my many identities, I am a Jew and I am a cancer survivor.  The intersection of these two roles inspired me to get involved with Sharsheret.

Two summers ago, my routine pap smear showed misplaced and mysterious cells.  Follow-up biopsies and, ultimately a full hysterectomy, showed that I had cancer in my ovaries.  So, I got the “spa treatment” at Smilow Cancer Hospital – my words for what was really a four-month chemotherapy regimen.  I lost my hair, 30 pounds, most of my strength and energy, and learned more about myself and life than I ever thought possible.

Cancer for me was an opportunity to really get to know myself and see my family and friends through entirely different eyes. What I didn’t do was let cancer get me down.  I found an inner strength I never knew I had.  I found the ability to laugh at my side effects.  I found that my husband really did know how to do dishes (and much more) and care for me in the most loving and supportive way.  I expected to be providing emotional support to my daughter and elderly mother, when, in fact, they are the ones who helped me find my strengths and gave me just the right amount of support, without making me feel that I needed it.

During my recovery, I went to a Jewish Federation of New Haven event where Rochelle Shoretz, Sharsheret’s Founder, was the keynote speaker.  I didn’t want to think about cancer and I recall telling her before she spoke, “if this gets too cancer-y, I’m outta here”.  It wasn’t, and I stayed.  I had been thinking for some time that I wanted to give back, appreciative of the great care and attention I had been given.  But, I didn’t know how until I learned about Sharsheret. 

That night, I contacted Sharsheret to say I wanted to spread the word about this marvelous organization and become a peer supporter.  I learned so many positive things through my cancer experience and I want to help others who have my diagnosis.  I learned what it’s like to be on the receiving end of support, to have someone to talk to who can only understand based on a shared experience, and someone who will just let me talk without comment or judging.  That’s what I want to do as part of Sharsheret’s peer support program.

After nine months of being cancer-free, my cancer returned and I’m back in chemotherapy.  Different cocktail and a different experience.  But, once again, my body is fighting as hard as it can to be cancer-free.  Some things haven’t changed the second time around.  I want to enjoy life every day – the little joys and the big ones. And, with those around me and through Sharsheret, I plan to be there for others for a long time to come. 

Celebrate Women’s History Month and Empower Women’s Health with Sharsheret

Posted with permission from Repair The World, www.werepair.org.

March is Women’s History Month – a month dedicated to the amazing women – from Sojourner Truth and Amelia Earhart to J.K. Rowling and Gabrielle Giffords – who have changed the shape of history in ways both large and small. We at Repair the World think Rochelle Shoretz is a great candidate to add to that list.

Rochelle is the founder of Sharsheret, an organization dedicated to serving the unique concerns of Jewish women with breast cancer. This year’s Women’s History Month theme is empowerment and education – and we couldn’t think of a better way to honor that than by highlighting Rochelle and Sharsheret’s profound work.

As the largest and most influential organization supporting young Jewish women who are facing breast cancer and their families, Sharsheret is already worthy of a mention. (On that note, check out Repair the World’s interview with staff member, Elana Silber.) But Sharsheret’s work around education, and empowering people to spread the word that breast cancer is an issue touches virtually everyone’s life, is truly amazing.

We particularly admire how they’ve rallied teens and college students in awareness raising. Here are just some of the ways:

  • Bar and Bat Mitzvah program: Sharsheret offers tons of creative ideas for incorporating breast cancer awareness and fundraising into a bar or bat mitzvah.
  • Sharsheret on Campus: Students bring Sharsheret to their campuses, organizing health and athletic events, helping to raise money, and distributing brochures to spread the word.
  • Pink Shabbat: Young people host a special “Pink Shabbat,” which brings people together on Friday night and Saturday to talk about breast cancer awareness. (They even have a recipe for pink challah!)

Honoring Women’s history means celebrating women’s individual and collective achievements and triumphs. But it also means remembering life’s tougher times, when women (and their families and friends) band together in witness, comfort and support of one another. Find out more ways you can get involved with making history by joining Sharsheret’s work here.


About the Author

Leah Koenig is a freelance writer and editor whose work has appeared in The New York Times Magazine, Saveur, Every Day with Rachael Ray, Hadassah Magazine, Lilith, Edible Brooklyn and Beliefnet. She contributes a monthly column on food to The Forward and a bi-weekly column to Saveur.com. She is also the former editor of Hazon's award-winning blog, The Jew & The Carrot. Leah joined Repair the World as a contributing editor in late 2009.

“Wear Pink for Tammi” Day

After being diagnosed with breast cancer, some people want to keep the news to themselves or share it only with a small group of loved ones. I was the opposite. I wanted to tell all of my family and friends. I wanted to serve as a “cautionary tale” to prompt my friends in their 30’s and 40’s to perform regular self-exams and get annual mammograms.  I also wanted to surround myself with as many well-wishers as possible.
 
I am fortunate to have a wide circle of friends and family who are loving and supportive.  People from all over the country asked me, “What can I do?  How can I help?” I came up with the idea of making my mastectomy date “Wear Pink for Tammi Day”. I asked everyone to send me pictures of themselves, their family members, and even their pets wearing pink as a way to cheer me up after my surgery.
 
The response was incredible.  On July 14th, the day of my surgery, I received more than 50 photos from friends, acquaintances, and friends-of-friends I didn’t even know, all of them wearing pink and wishing me well.  When my parents and husband visited me in the hospital they wore matching t-shirts airbrushed with my name and a pink ribbon. When I came home from the hospital, our nanny had decorated the entire house in pink.  She and my young sons made a photo collage on pink construction paper of themselves wearing pink and hung it in my bedroom so I could admire the photos as I recuperated in bed. My neighbor’s daughter made a pink beaded bracelet for me and I wear it every day.

I understand that this approach might not be meaningful to everyone, but for me, it was the best I could ever ask for. I felt completely enveloped in love and support which kept me in a bright disposition even on days when I was in pain or scared.  I believe that this love and support helped fuel my recovery and I feel truly blessed to have such wonderful people in my life.  I am very grateful to Sharsheret’s staff for the care packages of literature and comfort items they sent, and especially for providing ongoing support and connecting me with peer supporters. I recently signed up to serve as a peer supporter for other women facing breast cancer and look forward to sharing the kindness and compassion I received with the women of Sharsheret.

You Won't Know If You Can Until You "Tri"

 

 

Are you an aspiring athlete and dream of completing a triathlon, or an experienced athlete who didn't get a slot in the lottery?  

Join Team Sharsheret at the New York City Triathlon on July 8th for the most meaningful competitive experience of a lifetime!  We have individual and relay slots so you can train and race with friends.  We'll even fly you to NY for the race if you live outside of the NY metropolitan area.   

As a member of Team Sharsheret, you'll receive: 

  • Race gear
  • Coaching
  • Training courses in the NY metropolitan area
  • Virtual training for athletes outside of the NY metropolitan area
  • Personal fundraising page 

Our training program starts on March 16th - e-mail athletes@sharsheret.org for more information and to join Team Sharsheret today!

Sharsheret Annual Benefit Sunday, May 6, 2012 - 10:30AM

Teaneck Marriott at Glenpointe
Teaneck, New Jersey

Gail Propp
Guest of Honor
Moe Rice
Recipient of the Lisa Altman Volunteer Tribute Award

 

Reserve your seats today!

For more information and sponsorship opportunities, please call 866.474.2774 or e-mail events@sharsheret.org.

Benefit Chairs: Dr. Tammy Bryk, Dr. Patricia D. Cayne, Thalia Federbush, Joe Lerner, Alissa Zagha
Auction Chairs: Jennifer Aranoff, Ally Cooper, Batya Paul

Start The New Year Off Right

"What started as a personal goal of losing weight and running the marathon became a national goal of raising awareness about breast cancer and Sharsheret's programs."

- Josh Rozenberg
  Team Sharsheret Athlete

 

Whether you want to kick off the New Year on the right foot and improve your health, or just race for the cause, join Team Sharsheret at the NYC Half-Marathon on March 18, 2012 or the NYC Triathlon on July 8, 2012.  Team Sharsheret provides race gear, coaching, virtual training, and more to help you cross the finish line.  Race slots are limited so act fast; e-mail athletes@sharsheret.org and reserve your slot today!

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