Helping Us Help You

By: Ruthie Arbit, Sema Heller Netivot Shalom Summer Intern

After 10 weeks of interning at Sharsheret, I can safely say that I went from a state of bewilderment from when I initially heard about Sharsheret in April to a state of admiration. Then, I was struck by the cause; I didn’t know that breast cancer and ovarian cancer were Jewish issues and I wondered what Sharsheret was doing to help Jewish women facing these illnesses. Now, I am in awe as I think about the callers, the peer supporters, and the volunteers who help us at Sharsheret do what we do.

The Sharsheret office is an incredible place. On any given day there is a string of devoted volunteers popping in and out, Team Sharsheret athletes coming in to meet with the staff, and the daily visit by the postman who picks up packages filled with hundreds of breast cancer and ovarian cancer brochures to be delivered to women and families, health care professionals, conferences, and Jewish organizations nationwide. Add all of this to the hard work that the dedicated staff at Sharsheret puts in – providing emotional support to women living with cancer and their families, answering countless questions from health care professionals about the unique needs of their Jewish patients, planning outreach events to spread the word about Sharsheret’s programs and services, coordinating medical symposia, and processing generous contributions from donors. It’s no surprise then that after only 10 years since its inception, Sharsheret has become an esteemed national organization with 11 programs, more than 1,200 peer supporters, and thousands of volunteers and supporters.

However, what impresses me most about Sharsheret are the women. The women who call Sharsheret for support as they ponder the potentially life-changing decision of whether or not to undergo genetic testing, the women who have just finished their final round of chemo and are already volunteering to be peer supporters, and those who are living with metastatic cancer and finding value in every day moments.

All of these women amaze me.

So, as I near the end of my internship, I want to say thank you to the women whose strength fuels the energy of Sharsheret. I am sure that this won’t be the last time I will be surprised by the amazing work of Sharsheret, its staff, and its women. Although my internship is ending, my connection to Sharsheret will remain strong. I look forward to joining Sharsheret’s volunteer force and contributing my time and skills to this wonderful organization.

Meet Team Sharsheret’s 10 Triathletes!

We are excited to introduce Team Sharsheret’s 10 athletes who will compete in the Nautica/NYC Triathlon on August 7, 2011. Our athletes have been training hard for this Olympic Distance Race that includes a 1500m swim, a 40k bike, and a 10k run! Please join us in supporting their athletic and fundraising efforts as they take on this incredible challenge.

Jonathan Blinken

David Bosses

Robert Eisenberg

David Glick

Judah Greenblatt

Mark Levie

Rebecca Schwartz

Talya Spitzer

Max Trestman

Laurie Wechsler Horn

Get in shape with Sharsheret!

Whether you’re an experienced athlete or a beginner, Team Sharsheret has lots of exciting opportunities to help you stay in shape and challenge your athletic abilities. Check out these events and competitions and let us know which one you want to sign up for!

• Ever dream of running 26.2 miles? Team Sharsheret has slots for the ING NYC Marathon on November 6, 2011! Don’t live in the tri-state area? We offer one round-trip ticket from your U.S. hometown to a NYC area airport! E-mail athletes@sharsheret.org to apply for your slot today and include your name, phone number, and a brief description of yourself and why you want to join Team Sharsheret. For more information, visit Team Sharsheret 2011 ING NYC Marathon.
• Join award-winning Team Sharsheret at the NYC Race for the Cure, September 18, 2011 in Central Park, NYC. Sign up before July 16th and save $5 at www.komennyc.org/goto/sharsheret2011 and click on the words "Join Team".
• Team Sharsheret has slots for the now sold out 2012 Ironman US Championship, a 140.6 mile race, to be held in the greater NYC/NJ area on August 11, 2012. This race will be the first ever Ironman competition in the New York City metropolitan area. For more information, e-mail ekleinhaus@sharsheret.org.

From the Cab to the Conference: ASCO’s Annual Meeting From a Patient’s Perspective

By: Rochelle Shoretz, Founder and Executive Director

Each year, thousands of clinicians and researchers convene at the American Society of Clinical Oncology (ASCO) Annual Meeting. Sprinkled among them are patient advocates and patients, like me, who attend sessions so that they can share the latest research with others. This year, I was fortunate to attend the ASCO Annual Meeting in Chicago with a patient advocate scholarship from the Conquer Cancer Foundation of ASCO, and I’m delighted to be able to share research in both breast cancer and ovarian cancer with you.

But first, I need to share a conversation I had with a cab driver on my way to a local outreach event we coordinated for cancer survivors and professionals.

“Let me ask you a question,” the driver began. “There are thousands of researchers and doctors attending this cancer conference, but there is still no cure for cancer. Isn’t this a waste of time and money?”

I’ve heard this question many times before, and I’ve answered it many times before. But this time, I was en route to meet some of our Sharsheret callers living in Chicago, and survivors interested in learning more about our national programs – and the answer seemed more urgent. As I explained to the driver, the research presented at ASCO may not, itself, be the cure for the cancer, but it certainly includes critical pieces to the larger puzzle. And even though that research may not offer the cure today, it is giving most of us living with cancer better quality of life and, some of us, longer lives to live.

I hopped out of the cab and headed into “Cocktails and Conversation”, an opportunity for me to meet with our Sharsheret callers and new women welcomed by our partner organizations in Chicago – Bright Pink, Cancer Legal Resource Center, FORCE, Gilda’s Club Chicago, MyLifeLine.org, and Y-Me. Everyone was buzzing about the conference and the research to be presented that weekend.

For those of us facing breast cancer, the big ASCO news stemmed from a study that showed that post-menopausal women who have a high risk of breast cancer were less likely to develop the disease when they received an aromatase inhibitor called exemestane (Aromasin). That news is important for many of our Sharsheret callers, as 1 in 40 Jews of Ashkenazi descent is at high risk of developing breast cancer (and ovarian cancer) because of a mutation they carry in what is commonly referred to as the BRCA1 or BRCA2 genes. You can read more about the study at http://bit.ly/iLSZuj.

For those of us facing ovarian cancer, scientists at ASCO presented promising research findings from two studies that examined the drug bevacizumab (Avastin) to treat recurrent and newly-diagnosed ovarian cancer. You can read more about those studies at http://bit.ly/iqlc4a.

You can call Sharsheret to speak with a genetic counselor or one of our clinical staff with any questions about these research studies.

As we exhibit and attend breast cancer and ovarian cancer conferences across the country, all of the staff at Sharsheret look forward to sharing our findings with you. Whether our perspectives are gleaned in the cab or the conference hall, we’re proud to be your source of support and information on this journey.

Want To Run The ING NYC Marathon?

DIDN'T WIN A SLOT FOR THE

ING NYC MARATHON ON

NOVEMBER 6, 2011?

TEAM SHARSHERET HAS SLOTS!

E-mail athletes@sharsheret.org to apply for your slot today and include your name, phone number, and a brief description of yourself and why you want to join Team Sharsheret.

For more information, visit Team Sharsheret 2011 ING NYC Marathon.

Help us reach family and friends!

Looking forward to welcoming you to Team Sharsheret.

A New Take On The Four Passover Questions

By: Shera Dubitsky, Sharsheret Clinical Supervisor

In just a few days, Jews all over the world will participate in the Passover Seder. We will read from the same text, engage in many of the same rituals. Yet each Seder is unique. Every family brings its own traditions to the Seder, how they prepare, who hosts, who takes the lead, and who will clean up the next morning after only a few hours of sleep.

Individually, our Seder experience changes year to year. It is quite amazing how I can read the same story over and over again, yet each repetition highlights different aspects of the story depending on what’s going on in my life at the time. Perhaps this is why we are directed to read this story annually. We are challenged to find new meaning and garner new strength to guide us along the varying milestones of the journey, bringing us out of uncertainty to seder (order).

I imagine that for those of you, like me, who have a family history of cancer, you may relate to those Jews who were debating whether or not to leave Egypt. “Is this a journey that is necessary for me to take or will I be safe enough here?”

For those of you who are diagnosed with breast cancer or ovarian cancer, perhaps you connect with the people who felt rushed to make a decision with limited information and time to prepare as they embarked on their journey to the unknown. “I know that my well-being is in jeopardy in this moment. I am tired. I am scared. How should I push forward?”

Many people who left Egypt survived the splitting of the sea, wandering in the wilderness, and the anticipation of the journey into Canaan, wondered about the challenges ahead. Perhaps their story resonates with those of you who are post-treatment. “I am in awe of everything that I have survived to this point. I have learned so much about myself and my family and friends, but there is that little voice whispering in my ear, what lies ahead for me?”

Family members who have a loved one living with breast or ovarian cancer may relate to Moses’ family, who played an active role in the Passover story. “How can I best support my loved one?”

These Four Questions are just a sampling of the questions we hear at Sharsheret on a daily basis. We receive calls from women differing in age and cultural background. Women call us at varying junctures along their breast cancer or ovarian cancer journey. Although each individual and each family will have its own approach to coping and navigating this journey, Sharsheret is here to help provide seder (order), to share information, and to offer support along the way. As you continue to revisit the Passover story, we encourage you to revisit Sharsheret along your journey. Here you will find renewed meaning and renewed hope.

My Breast Cancer Journey

By: Evie Kaplan Downing of Wilmington, Delaware, Sharsheret Caller

My journey with breast cancer began on Mother’s Day 2009. I was 28-years-old. While breastfeeding my 21-month-old son, I noticed that my right breast hurt. Instead of feeling the small, firm spot signaling a clogged duct that I expected to find, I felt a much larger lump. I immediately made an appointment with my doctor who was, thankfully, able to see me that day. After she examined my breast, she assured me that she didn’t think the lump was cancerous. Just to be safe, she wanted me to have an ultrasound and a mammogram and probably a biopsy too, but she didn’t think I had anything to worry about. I went for my mammogram a few days later feeling lighthearted and unconcerned. I thought nothing of it when the technician told me that the radiologist needed to speak with me. He explained that my right breast showed large calcium deposits that were “consistent with carcinoma.” Before I knew it, I had an appointment with a breast surgeon. A biopsy showed that the tumor was, indeed, cancerous. I had a lumpectomy and 16 cancerous lymph nodes removed, and then learned I would need a mastectomy. I met with an oncologist who suggested I have genetic testing done because I am of Ashkenazi descent and was diagnosed at such a young age. At the time, I had no idea that being an Ashkenazi Jew put me at higher risk. The test showed that I was BRCA2 positive, so I opted for a bilateral mastectomy. The mastectomy was followed by 5 months of chemotherapy and 4 weeks of radiation, as well as breast reconstruction with expanders followed by silicone implants.

My involvement with Sharsheret began when my mother suggested that I call. I was really touched by how much the clinical staff cared about my well-being. They set me up with a peer supporter who had also been diagnosed while she was still breastfeeding, but at the time, I was still in too much shock over my diagnosis to make the call. After I completed most of my treatment, I began thinking about how I would have to put off having more children and found it very upsetting. Sharsheret set me up with another peer supporter. I realized that I’m not quite ready to face delayed childbearing head-on, but it is comforting to know that when I am ready, there is someone there for me to speak with who has been through this as well. This past December I participated in Sharsheret’s teleconference on prophylactic surgery for breast and ovarian cancer. I found it reassuring to hear women who had undergone prophylactic surgery speak about the pros and cons and about how it had affected them. The teleconference also answered several questions I had about having an oophorectomy.

I will be taking medication for the next five years. I will consider having an oophorectomy before I turn 40 because of my increased risk of ovarian cancer. At the same time, I learned that I am a whole lot stronger than I knew. I learned what an amazing group of friends I have. My husband and I realized how much we really mean to each other and that we really do want to spend the rest of our lives together. It has not been an easy journey, but I have learned a lot about myself and the world. I would never wish breast cancer on anyone, but I would also never take back my experience.

You’re Too Young To Have Cancer

By: Marcia Donziger of Denver Colorado, Sharsheret Peer Supporter

I was 27 and thought I had a bladder infection. It turned out to be a tumor on my right ovary. At first, my gynecologist was not concerned. “Could it be cancer?” I worried. “No,” she replied, “You’re too young to have cancer.” I was married and trying to get pregnant at the time, so I scheduled surgery immediately to get it over with. The doctor assured me the worst that could happen is I’d lose one ovary and I would still be able to have children. She was confident the tumor was benign.

On the day of my surgery, I was wheeled into the pre-op room. That’s when the medical assistant approached me with a legal form to sign, agreeing to the potential of having a hysterectomy. My doctor and I never discussed this. Five hours later, the surgery was over, and I was in the recovery room. I was in a lot of pain. That’s when my doctor broke the news. “I’m sorry, but you have ovarian cancer. We had to do a complete hysterectomy.” Through the pain I heard, “You have cancer. You can’t have children.” The irony was that my doctor was six months pregnant. Her belly at my eye level made me feel even more devastated.

Stage IIIc ovarian cancer spread throughout my abdomen. I faced infertility, followed by a bowel obstruction, and six months of chemotherapy. One of the things I struggled with most was keeping friends and family up-to-date with what was going on. I felt the daily burden of not communicating effectively with those I loved who were so concerned. In 2007, I founded a non-profit organization to help all cancer patients and caregivers easily communicate with friends and family during the treatment process. MyLifeLine.org Cancer Foundation believes a strong support community is critical for cancer patients. We provide free, personal websites to cancer patients and caregivers so they can easily connect with family and friends, because no patient should ever feel alone.

The other major difficulty I dealt with was not knowing anyone else my age with ovarian cancer. The average age of diagnosis at that time was 61 and I was 27. The worst side effect was infertility and I couldn’t find anyone else who could relate to me. For this reason, I am so proud of Sharsheret for developing a peer support program for young, Jewish women living with ovarian cancer. I am excited to be a peer supporter and share the important message with other young women facing ovarian cancer that there is light at the end of the tunnel, and there are fertility options.

Today, my husband and I are the parents of twin boys, age 5 ½, who were born with the help of an anonymous egg donor and surrogate mom. Becoming a mom was the final piece to my healing, and I look forward to helping other young ovarian cancer patients through Sharsheret.

Pregnant With Breast Cancer

By: Michelle Rosch of Naperville, Illinois, Sharsheret Peer Supporter

On February 18th, 2008, two weeks after my 27th birthday and eight months into my first pregnancy, I was diagnosed with Stage III breast cancer. Due to the aggressive nature of my cancer, I delivered my son, Aiden, a month early and had a double mastectomy with reconstruction one week later. The doctors informed me that I was estrogen positive and would risk the cancer returning if I had any more children. My wonderful sister-in-law, April, offered to carry my next child, so I immediately started receiving daily hormone shots to harvest my eggs starting a week after my surgery with just three weeks to finish the process before I started chemotherapy.

During the summer of 2008, I received six chemotherapy treatments every three weeks for four months. After 18 days I started losing my hair, so my husband, Mike, and I decided to shave our heads. I shaved his head and he shaved mine. We actually laughed and had a fun time doing it! I bought a few wigs but only wore them for weddings. I was most comfortable wearing a cute scarf, especially since it was so hot outside. After chemo, I had 7 weeks of daily radiation. The radiation made me feel tired and my skin felt like I had a bad sunburn, but it was very tolerable compared to the side-effects of chemo.

As 2009 began, I had a preventive hysterectomy and had my first breast reconstruction surgery 3 weeks later - all before Aiden's first birthday. I accomplished so much in a year and it felt nice for the first time to view myself as a strong and brave person. I especially loved my new short hairstyle! Over the next year I had my last reconstructive surgeries and here I am today, 3 years later. I'm healthy, happy, feeling great, and loving life!

The most important thing for me to do is give back and make a difference in the lives of other women living with breast cancer. Volunteering for Sharsheret as a peer supporter has been such a positive part of my life. I remember what a difference it made for me to have support from other young survivors and I am happy to give back in any way I can.

Breast Cancer For My 26th Birthday

By: Shira Gross of New York City, Sharsheret Caller
 
On the drive back to Manhattan after an incredible birthday getaway weekend, I received a phone call that would change my life forever. “Your pathology came back positive for Invasive Ductile Carcinoma.” I was diagnosed with breast cancer on my 26th birthday.

That following week was a blur comprised of doctor shopping, crying, reading scary things online, questioning my faith, etc. Before I had a second to breathe, I was at the hospital getting a core guided MRI biopsy of two other “questionable” lumps in both breasts. In my periphery I see the stoic and stoney-eyed technician who immediately became sympathetic when I started to cry. She asked me, "Are you familiar with King Solomon?" She then shared with me a snippet from his life. He wore a ring that said, “this, too, shall pass” and he would look to his ring during tough times. She told me to be brave like King Solomon and that I would get through this.

“This, too, shall pass” really became a mantra for me throughout this experience – despite how cliché it sounded at the time. I knew I would get through my lumpectomy and return to work just a few days later. I knew I would get through four rounds of chemo and losing my hair and social life, and now I’m even able to go out in my wig and still get approached at a bar and I got promoted at work! And ultimately, after having a change of heart, I knew I would get through my bi-lateral mastectomy and somehow resort back to a somewhat normal life.

I am very grateful for finding Sharsheret and being connected with a peer supporter who I can call with any questions. As a young woman with breast cancer, there were many issues that I faced that I did not feel comfortable speaking about with most people. Fortunately, Sharsheret introduced me to another young woman who provided me with incredible support.

I thank G-d that I caught this myself so early and that I am a survivor! Sometimes we get caught up in challenges and cannot see through, but we can draw strength from knowing that “this, too, shall pass.”

How Do You Wear Pink?

Our staff celebrates Pink Day! Top (l to r):
Ellen, Rochelle, Elana, Julie, and Sari.
Bottom (l to r): Rebecca, Shera, and Adina.

By: Tzvi Solomon, Sharsheret Volunteer

Tomorrow, thousands of “soldiers” from 68 schools across the globe will march together. Our army has soldiers stationed in high schools, day schools, college campuses, yeshivot, and seminaries. We like to call ourselves pink soldiers. We are an army that is ready to make a difference. We are an army that is here to show Jewish women and families affected by breast cancer that we stand by them. Our soldiers understand that when one person is hurting, we are all hurting. People may look at us and think that we serve as their hope and inspiration. However, those affected by breast cancer are our hope and inspiration. They inspire us to never give up the fight, to always keep going, and of course, to unite together in the battle against breast cancer. Join us for Sharsheret’s 2nd Annual Pink Day Worldwide and wear pink tomorrow - to school, work, around the house, or at the gym. Join our army of pink soldiers and show your support for Jewish women and families facing breast cancer.

Join Sharsheret's 2nd Annual Pink Day Worldwide tomorrow, Wednesday, February 9th!

Sharsheret's Pink Day Worldwide, launched last year by students on high school and college campuses across the globe, empowers students to educate their peers about breast cancer in the Jewish community and Sharsheret's national programs.

3 easy ways you can join Sharsheret's Pink Day Worldwide:

1. Rally your co-workers, family members, and friends - Ask them to wear pink tomorrow, take a "pink" group photo, collect $5 from each participant, and donate to Sharsheret.

2. Become a Sharsheret Facebook Fan - Change your status to: "February 9th is Sharsheret's 2nd Annual Pink Day Worldwide. Do you have your Pink on? Post this status in honor of Jewish women facing breast cancer." If you took a Pink Day photo, upload it to our page!

3. Donate online - Make your Pink Day donation online at www.sharsheret.org/payonline.php and choose Pink Day 2011 in the drop down menu.

For more information, contact Sharsheret's Program Manager and Campus Liaison Ellen Kleinhaus at ekleinhaus@sharsheret.org.

Breast Cancer with a Twist

By: H. Z. Ben-Nahum, Sharsheret Volunteer

Over 20 years ago, I was diagnosed with breast cancer. I was in my late 40’s, athletic, and health-conscious. The day it all began will be imprinted on my mind forever. I was enjoying a game of tennis, when the ball hit my nipple. I noticed that my nipple had swollen and had not returned to normal even after several days. Concerned, I decided to consult a doctor. I was advised to schedule surgery as soon as possible. I underwent a radical mastectomy, followed by treatment. Genetic testing wasn’t on my radar screen as Myriad Labs only discovered how to test for the BRCA gene five years after my initial diagnosis. I now have two adult children. My daughter recently approached me requesting that I undergo genetic testing because she was worried about her own risk of developing breast cancer. I obliged and am grateful that I tested BRCA-. For now, they will continue to have increased surveillance. I am living with metastatic breast cancer to the lungs, I’m experiencing side effects from treatment, but I stay active and busy. I still worry about my children and their risk of developing cancer, just like all mothers diagnosed with breast cancer. The only thing that makes me different is that I AM THEIR FATHER. I am lending my voice to raise awareness that breast cancer can be passed along from father to daughter. We must continue to protect our futures and those of our children by remembering to include the paternal family history when considering our children’s genetic risk of developing breast cancer. I hope that by sharing my story with Sharsheret, we can save lives.

Facing breast cancer at 36…now what?

By: Pamela Wolfe, Sharsheret Peer Supporter

Every day for the past two and a half years, breast cancer has been a part of my life. It is a subject I live and breathe, and on any occasion, I’ll gladly try to educate others or answer questions. It is a subject I feel very knowledgeable about since I took the crash course, “So you are 36 and have breast cancer….now what?” I was very lucky though, because I had fantastic friends and family who held me up and helped me through my personal battle.

When my Hadassah chapter asked me to share my experience as a young Jewish woman with breast cancer at a local event, I happily accepted, eager to speak about a disease I feel I can’t do enough about. I was asked to highlight 5 unique things I learned that others might not know, which made me question what was unique about my experience? Doesn’t every woman know about breast cancer? It made me realize that while most women do know about breast cancer, they probably don’t know about the challenges faced by a 36 year-old woman who didn’t want to be treated like she was diagnosed at 65, who still had a dream of starting a family someday, and who chose not to do chemo in favor a new treatment protocol.

I shared the intimate details of my ”new” world, one where I take pills in the morning that have life-altering side effects, but are the key to sustaining my life. For me, it is life. For the people listening, it is a side of breast cancer they never knew about. I have had the honor of being part of Sharsheret’s Link Program and using my personal experience to help other young Jewish women facing breast cancer. I am one of the truly blessed ones. I am fighting and surviving. I feel as if the reason I am still here, alive today, is to do just what I have done: educate women, raise awareness, and help others fight the fight.

Watch an exclusive interview with Team Sharsheret Triathlete Linda Gerstel on Fox 5 NY!

Watch Sharsheret Founder and Executive Director Rochelle Shoretz in an Exclusive TV Interview Featured on Fox 5 News NY

Eight years ago, when I was diagnosed with breast cancer for the first time, there was no organization dedicated to supporting young Jewish women facing breast cancer. I was 28 years old, raising two young children, and more than anything, I felt alone.

I have often said that Sharsheret’s success is not the product of one woman’s efforts – that there are thousands of angels who are sitting on my shoulders as Sharsheret grows at a remarkable pace. But these past few months, I have had the privilege of sitting on Sharsheret’s shoulders as I face breast cancer a second time. After my mastectomy in February, I received a Pillow of Support from Sharsheret to elevate my arm, just as so many of you have. Sharsheret’s Link Program has connected me with another woman who opted for the same reconstructive surgery that I was considering. And as I struggle with the concerns of a woman living with Stage IV breast cancer, I have had the support of Sharsheret’s Embrace Program, designed to address the needs of those living with advanced breast cancer. The Sharsheret, the chain, of support that I began eight years ago has come full circle. I began as a link in that chain and now use the strength of other links for my own support.

I am no longer alone in my journey. I have a Sharsheret family.