Sharsheret

A Fifth Question

The New York Times recently ran an article by Susan Gubar, “Living With Cancer: The Good Patient Syndrome”, that questioned the importance of being a model patient. When Susan was first diagnosed, she was agreeable, nodding politely when meeting with her doctors. She worried that if she asked too many questions, she would be unintentionally neglected or harmed by her medical team.

One woman in Sharsheret’s Embrace group for women living with advanced cancer noted that each time she went to an oncologist appointment she felt unnoticed by the office staff and her doctor. One day, she went straight to her appointment from a Brit (circumcision). She was dressed up and wearing makeup. The office staff was quite complimentary and paid her a lot of attention. Her oncologist, who typically spoke to her while reading her file, engaged in eye contact and remarked how wonderful she looked. This woman decided that from then on, she would put on some lipstick and go to her appointments well-dressed.  She told the group she felt as if she was now “dating” her oncologist - she wanted to be noticed.

Many women call Sharsheret with questions following a doctor’s appointment or scans – questions that are reasonable to ask their doctor during an appointment. Yet, they are afraid to ask these questions because they don’t want to come across as untrusting. When you have concerns, you may not pick up the phone and call the doctor because you “don’t want to bother them”. You worry about being labeled a “difficult patient”. At the end of the day, it’s your body, it’s your life.  Don’t be afraid to speak up and advocate for yourself because if you don’t, something serious may go unnoticed.

As we prepare for the Passover holiday, we are reminded of how the Jewish people were obedient and compliant for fear of further harm at the hands of the Egyptians. Moses was also worried about his ability to stand up to Pharaoh on behalf of the Jewish people, worried that he would make an already bad situation worse. In reality, it was only when Moses spoke up and advocated for his people that he and the Jews were set free. What would have become of the Jewish people if Moses did not stand up for them? I’m adding this question to the already established Four Questions that will be recited at my Seder as a reminder to empower myself in the pursuit of health and well-being.

New Ovarian Cancer Study Is Released

Many important studies were presented last week at the Society of Gynecologic Oncology (SGO) Annual Meeting on Women’s Cancer in Los Angeles, CA.  Among them were two studies that were covered in multiple media outlets, including the New York Times (click here to read the article).  The first study looked at more than 13,000 women with ovarian cancer and found that women are 30 percent less likely to die of ovarian cancer if they have guideline-recommended treatment.  Yet, nearly two-thirds of those women do not receive it.  Guidelines for ovarian cancer specify types of surgical procedures and chemotherapy, often the need for debulking surgery prior to chemotherapy.  The study found that surgeons who were more experienced in gynecologic oncology surgery, and hospitals that treated more women with ovarian cancer, were more likely to follow the guidelines, which translated to better outcomes for their patients.  The second study looked at the method of delivery of chemotherapy to patients.  Intraperitoneal (IP) chemotherapy, where chemotherapy drugs are pumped directly into the abdomen, utilizes the same chemotherapy agents often administered intravenously. While IP chemotherapy is more toxic, and logistically more complicated than IV chemotherapy, there is clearly a benefit in terms of survival rate.   

For you, the patient, these studies underscore the importance of making sure that you act as your own advocate by asking to be treated by a physician with ovarian cancer expertise and experience who practices according to available guidelines.  For ovarian cancer information and support, please call Sharsheret at 866.474.2774 or e-mail info@sharsheret.org

Ethan Wasserman, MD
Sharsheret Medical Advisory Board Member

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Finding Humor

The holiday of Purim celebrates the overcoming of Haman’s plot to exterminate the Jews - a pretty serious and scary scenario.  And yet, there is an inherent silliness in the celebration of Purim.  We dress up in costumes, we intentionally shout out and interrupt the reader of the megillah, and we overindulge in candy, sweets, and wine.  We invert the frightful reality of the Jews as the target of an evil plot and find our humor.

The definitive research into the potential health benefits of laughter haven’t been done yet.  However, there is a tremendous amount of research that suggests that humor and a good attitude do impact the healing process.  Some studies have shown that laughter affects the way our bodies function and we do change physiologically when we laugh. There is also some research that suggests that laughter improves mental functions such as alertness, memory, and creativity.  It can also ease anxiety and fear, relieve stress, improve our moods, and enhance resilience and acceptance.

I feel encouraged and inspired that many women calling Sharsheret have found humor as a coping strategy when navigating the very frightening world of cancer.  One woman shared the following humorous anecdote:

“Someone told me that the best way to achieve inner peace was to finish things I had started.  Today I finished two bags of potato chips, a lemon pie, a fifth of Jack Daniels, and a small box of chocolate candy.  I feel better already.”

Laughter is a natural intervention that can be accessed any time.  It doesn’t cost anything. There is no need to haggle with insurance companies for coverage.  Laughter relies on the natural physiological process to help you manage the emotional side effects of living with cancer.  My wish for all of you is that you find humor, and that in turn, that humor will help you tolerate the difficulties, overcome the unexpected, and free your spirit.  Happy Purim!

Put A Spin On It

A family Chanukah party: Latkes have been eaten, candles are lit, and it’s time to gather for a game of dreidel. Everyone finds a position at the table, the chocolate coins are distributed, and the dreidel is placed in the center.

Everyone antes up. A minute has passed, two minutes. The game does not start while the dreidel remains idle on the table. If you stand the dreidel up  - it will just tip over. You have to spin the dreidel to keep it standing.  You have to spin the dreidel to make the game meaningful. And I love that everyone has their own technique on how to spin the dreidel.

The letters on the side of the dreidel indicate how you will fare during that turn. Will your spin of the dreidel result in needing to put more into the pot? Will you walk away with something? Half? The whole thing? Where will things stand on your next turn?

When you experience medical or emotional challenges, you feel like you are spinning. You may not know where you are going to land. Going through the motions of doctor appointments and treatment is critical for survival. But your own technique of how you spin the experience is helpful in finding meaning. The personal spin you put on it can move you beyond surviving to thriving. 

Sometimes it’s hard to find the right spin. You may try to make the best of it, but it’s tiring to have to put a good spin on things during each step of this journey. You may be asked to ante up again emotionally and you worry that your resources will run dry. But there is always the next turn. Stay in the game. Continue trying to bring meaning to this experience. Who knows – on your next turn you may just walk away with a stack of chocolate coins that, when unwrapped, will reveal that you’ve learned something new about yourself. 

Wishing you a happy Chanukah!

Our Thanks

In celebration of Thanksgiving, we wanted to share some thoughts from our staff on what Thanksgiving means to us and what we are thankful for this year.  We tried to keep it to 6 words more or less.  Feel free to share your own thoughts in the comments section.  Wishing you and your family a happy, healthy Thanksgiving!

“Each and every single day. Period.” – Rochelle Shoretz, Executive Director

“Great-grandma at the head of the family table.” – Elana Silber, Director of Operations

“Grateful for everything I have and every opportunity I have been given.” – Rebecca Schwartz, Director of Community Engagement

“Family, food, elastic waistband. Simple life.” – Shera Dubitsky, MEd, MA, Clinical Supervisor

“Pumpkin and Pecan Pies for Prevention!” – Adina Fleischmann, LSW, Link Program Coordinator 

“Gratitude turns what we have into enough.” – Jennifer Thompson, MSW, Survivorship Program Supervisor

“Filled with appreciation, love, and turkey.” – Danna Averbook, LSW Program Coordinator

“Family, Juicy, Laughter, Memories, Friendship, Sunny Days.” – Ellen Kleinhaus, EdM, MA, Program Manager and Campus Liaison

“Turkey, beer, couch, football, tryptophan, nap.” – Mike Lowy, Technology Director

“Family, Memories, Parade, Grateful NOT to cook, WINE, CHEERS!!” – Sari Samuel, Controller

“Gobble gobble ‘till you wobble wobble.” – Amanda Kirschner-Lipschik, MSW, Program Assistant

“Thanksgiving is family, fun, and laughter!” – Julie Moore, Office Manager

A Sponsor's Story

I was sitting shiva after the passing of my father a few months ago when a friend and fellow attorney, Jennifer, stopped by to give her condolences.  While we were catching up, Jennifer mentioned that she volunteers at Sharsheret and was helping to coordinate the organization's team at the Making Strides Walk in New York City on October 21st.  I had heard of Sharsheret and actually had seen a Sharsheret pen in the kitchen “pen drawer” that morning, but I didn't know what the organization did.  Jennifer went on to explain Sharsheret's mission of supporting Jewish women and families facing breast cancer.  I was truly moved by her words and Sharsheret's incredible programs and services and knew that I had to get involved with this amazing organization.  Part of Jennifer's job was to secure corporate sponsorships for Team Sharsheret.  I immediately jumped on board as a Team Champion sponsor.  I am proud to lead Team Sharsheret's 2012-2013 sponsors and look forward to a most successful event this Sunday. 

 

Team Sharsheret Sponsors

Team Champion

Bernstein Liebhard LLP

Team Guardians

Med-Pat,Inc.

Team Sponsors

Campmor Inc.
EMCO Plumbing
Englewood Hospital and Medical Center & The Leslie Simon Breast Care and Cytodiagnosis Center
Geller and Company
Glatt Express Supermarket/Lazy Bean
Shari and Nathan Lindenbaum
Teaneck Radiology Center, LLC

Team Supporters

Lisa Altman Foundation
Marble Dental LLC
Debbie and Michael Blumenthal
Hillel International – Hunter College, Brooklyn College, Baruch College
Michael Strauss Silversmiths
Pediatric Occupational Therapy Services
The Rocking Chair,  A Women's Wellness Center
The Sixteenth Street Synagogue
Yeshiva University, Stern College for Women

Reflections For The New Year

I remember sitting in the synagogue on Rosh Hashanah and Yom Kippur as a child, watching the clock and counting how many pages of prayer were left in the service. I wanted to run out when the Rabbi began speaking. And the silent prayer – well, that just went on forever. “Oh my goodness, will this ever end?”

As an adult, I now appreciate the High Holiday services. I love the melodies that unite the congregation into one harmonious voice. The Rabbi’s message gives me much to contemplate. That silent prayer, though, is still a challenge. Occasionally, my private thoughts are comforting and invigorating but sometimes, the silence is too much to bear. Either way, it is in this stillness of my mind that I have learned the most about myself.

My true journey takes place in the quietude. All the events that happen in my life are just the junctures - first steps, graduations, jobs, weddings, children, or illness – are all merely points in time. It is in the quiet reflection that I ascribe the meaning.

When facing ovarian cancer or breast cancer, life may seem to swirl around you – doctors’ visits, scans, treatments, and follow-ups, while maintaining jobs and families. These things impact your family life, your financial well-being, and your emotional and physical health. I suspect that at one time or another you may have thought, “Oh my goodness, will this ever end?”  As Sharsheret Peer Supporter Beverly Levy shared in her National Ovarian Cancer Awareness Month blog post, “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.  But just like in the arcade, there are good times along the way.  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.”

In this holiday season, I encourage you to take advantage of the stillness, whether in prayer, meditation, or just finding a quiet time to reflect on how this past year has unfolded, what meaning it has held for you, and what your hopes, dreams, and aspirations are as you move forward.  All of us at Sharsheret hope that you will find strength, renewal, and meaning as you celebrate this upcoming New Year.

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!

Biking and Blessings For Cancer Survivors

Just returned from a 90th birthday celebration bike ride from Boston to Newport (Rochelle Shoretz's 40th and my 50th). The cycling group was organized by a friend, Richard Shuster, who has as large a personality as Rochelle's. It was not a charity ride. Instead, these annual Shuster rides are all about pure joy and being mindful of life's blessings. In our group of 40 bikers, there were three cancer survivors and a woman whose daughter is BRCA positive, as well as Andy Seidman, a renowned breast cancer oncologist at Memorial-Sloan Kettering Cancer Center.

The first day had its share of a few treacherous roads but then we navigated on to a beautiful bike path. As I biked alongside Rochelle, she was drafting behind Andy and looked at me and said how surreal it was to be riding on Andy's tail. Just as we pulled into the Biltmore Hotel in Providence, Rhode Island, having clocked 52 miles, the sky opened up and there was a torrential downpour. We considered ourselves blessed simply by the fact that we managed to stay dry.

The second day began with an "official" toast to the "most inspirational rider", who briefly spoke about Sharsheret as I stood beside her clad in my Sharsheret cycling gear. After riding along a 17-mile bike path along the water, the day ended in Newport as we biked into a park bordering the Atlantic Ocean with kids flying kites across the sky. Spectacular!

As I biked alongside my daughter Kayla, who will be college-bound by the end of the upcoming school year, I was reminded of how unsuccessful we were at flying kites when she was younger. I felt blessed not just because kites flew in the sky rather than the threatening showers that were predicted earlier in the morning, but also for celebrating my 50th birthday, biking next to her.

Birthdays take on a more special meaning after a breast cancer diagnosis. It did not surprise me that Rochelle had the physical stamina for the 100-mile bike journey. It was the first time I witnessed how she had the stamina to keep retelling the Sharsheret story. The wheels of joy and embracing life's blessings kept us going. Next year, we will clock the extra one mile to get us to a century!! The year after that we will aim for 120!

Speaking About the Unspoken Reality of Cancer

My grandmother died in 1995 after a long battle with breast cancer.  In all of the years of her illness, I cannot recall her using the word "cancer".  She spoke of being "sick", "weak", "unwell", and she asked me, on her death bed, to remember her.  "Don't forget me," she would say repeatedly, frail and bald and unlike the confident Bubby who had pushed me on the park swing as a child, arms made strong from years of sewing sweaters in a factory. I remember sitting beside her, law books in my lap as I studied for exams by her hospital bedside, thinking that her request was odd: "Don't forget me".  How could I forget her, my own grandmother, who had helped raise me?

But the reality of my grandmother's generation was that those with cancer were often forgotten. The disease itself was not discussed.  Some whispered about "Yeneh Machlah" - "that disease" - in Yiddish.  Others would refer to the "C word", without actually uttering the word itself.  Fears of "Ayin Harah" - the evil eye - shadowed real conversations about cancer, and concerns about marriagibility among family members forced many into a hiding of sorts.

Eleven years ago last week, I, too, was diagnosed with breast cancer for the first time - 28 years old, an attorney raising two young children.  And sadly, not much had changed in the Jewish community since my grandmother's diagnosis.  Despite the plethora of organizations addressing community needs, there was no Jewish response to breast cancer although 1 in 40 Jews of Ashkenazi descent carries a gene mutation that makes us almost 10 times more likely to develop hereditary breast, ovarian, and related cancers.  New research points to genetic susceptibility among Sephardi Jewish families as well.

I founded Sharsheret, a national breast cancer organization addressing the needs of Jewish women and families facing breast cancer, to fill that void.  In the past 10 years, we have launched 11 national programs, including one addressing ovarian cancer among Jewish families.  We have welcomed more than 1,600 women to our National Peer Support Network.  We have responded to more than 24,000 breast cancer inquiries, presented more than 250 education programs nationwide, and educated students on more than 150 campuses across the country.  We have been awarded a seat on the Federal Advisory Committee on Breast Cancer in Young Women and federal grants to develop programming specific for Jewish women and families affected by breast cancer.

Perhaps even more than Sharsheret has accomplished on its own, I am proud that we have paved the way to welcome neighbors into this once lonely community of cancer advocacy and support.  Today there are more than 30 Sharsheret Supports partners - Jewish organizations that develop local breast cancer and ovarian cancer programs nationwide - adding to the growing Jewish communal response to cancer.

As I mark my 40th birthday today, a two-time cancer survivor, I celebrate not only the life with which I have been blessed, but the lives of those, like my grandmother, whose cancer journeys - no longer a forgotten whisper - have found their voice.