As we look towards 2010, we are proud to highlight the Best of Sharsheret 2009. Wishing you a happy, healthy New Year.
Sharsheret's genetics poster abstract, To Test or Not to Test: The Influence of Ashkenazi Jewish Ethnicity, was chosen for display at the International Symposium on Hereditary Breast and Ovarian Cancer and was published in the October edition of Current Oncology.
Sharsheret presented education and outreach events in cities nationwide, including Austin, TX; Detroit, MI; East Brunswick, NJ; Hollywood, FL; Philadelphia, PA; Rockville, MD; and Scotch Plains, NJ.
More than 800 runners and walkers joined the first-ever Boca Raton Synagogue Sisterhood's Annual Run/Walk for Sharsheret, organized by local volunteers.
Founder and Executive Director Rochelle Shoretz shared her personal journey through breast cancer in an exclusive interview on Fox 5 News NY.
Sharsheret Link, Meredith Fried of Needham, Massachusetts, was featured in Jewish newspapers accross the country highlighting her inspiring story.
Manicure for the Cure events raised breast cancer awareness among thousands of students on 16 college campuses nationwide.
Annual Benefit Luncheon honored authors and breast cancer survivors, Rochelle Hirsch and Naava Parker, and musical artist, Suffy Rudman.
Whether you've raced before or have only dreamed of competing, join Team Sharsheret as we partner with Triathlon Team Full Throttle in the NYC Triathlon, July 18, 2010!
We:
Provide a coveted slot in the now sold-out Triathlon, race registration, and related fees
Dress you in official Triathlon gear
Offer bike training in New York's Central Park and a course in the basics of Triathlon training at Chelsea Piers
Arm you with 6 months of online running, swim, and bike training routines
Surround you with athletes who will motivate and inspire you to reach the finish line in support of this important cause
You:
Agree to raise a minimum of $5,000 for Team Sharsheret to support our national programs (We make it easy, with personalized pledge pages on Sharsheret's website!)
Notify friends and family of your participation in this year's Triathlon
Have the competitive experience of a lifetime
For more information about joining Team Sharsheret this year, please e-mail athletes@sharsheret.org with your name, your phone number, and a brief description of who you are and why you want to join Team Sharsheret this year.
But ACT FAST! We have only 5 Triathlon slots this year, and they are sure to go quickly.
Twice a month, Sharsheret’s Embrace support group for women living with advanced breast cancer meets via teleconference. One group session is topic-driven and the second group session is social, where the members catch up with one another and share information. Last week, our group focused on the topic of drawing inspiration from the story of Chanukah. We would like to share our insights here with all of you as a special gift to the women of Sharsheret. Best wishes for a Happy Chanukah!
The theme of the Chanukah story is how the weak overcame the mighty. The Greek army was large, powerful, and certainly mighty. The Jewish army, the Maccabees, were much smaller in comparison and were certainly considered the weaker of the two forces. Yet, the Jews conquered their enemies and succeeded. This metaphor can also be applied to the fight against breast cancer. There are times when the cancer can feel mighty. Even cancer treatment can feel mighty and can weaken a person. Yet, treatment can also be considered an arsenal against the mighty cancer. When a woman is weakened by cancer or treatment, what resources, both internal and external, can she rely on to overcome the mighty?
We also discussed the She’hechyanu (who has given us life) prayer that is sung on the first night of Chanukah when the candles are lit. This prayer resonated differently with each woman as we reflected on what is happening in our individual lives at the moment. Some women felt grateful to have been given the life that they have, even though they were presented with a cancer diagnosis. Others connected with sustaining life and feeling grateful for the arsenal of treatment available to women facing breast cancer.
Finally, we discussed the light from the candles. Light is often synonymous with hope. The Maccabees were running out of light. Were there times they experienced hopelessness? We know from the story that they never gave up hope and were fortunate to experience a miracle. They were granted enough light to help them conquer the Greeks. Why did the light last for eight days? It would have seemed more natural for the light to have lasted for seven days. After all, seven is a number often seen in Jewish life - seven day of creation, seven days of the week. What can we make of the fact that the light lasted beyond the natural limits? We learn from this story that we are sometimes pushed beyond our limits, and we must therefore, push beyond our natural physical and spiritual limits in order to overcome the mighty.
Follow Sharsheret on Twitter and help us celebrate #charitytuesday today! Put #charitytuesday in a tweet (Twitter status update) along with @Sharsheret. Ask your friends and Twitter followers to join you in spreading the word about Sharsheret!
Sharsheret's national teleconference, New Breast Cancer Screening Guidelines: What Do They Mean For Me?, recorded on November 24, 2009, featured Sharsheret Medical Advisory Board member Dr. Thomas Kolb (NYC radiologist) and Sharsheret Genetic Counselor Niecee Singer Schonberger, MS, CGC. The panelists addressed the new breast cancer screening guidelines released by the United States Preventive Services Task Force last week.
Listen to Sharsheret’s National Teleconference, New Breast Cancer Screening Guidelines: What Do They Mean For Me?.
In breaking news, the United States Preventive Services Task Force, an independent panel of experts appointed by the federal Department of Health and Human Services, released new guidelines on November 16th, recommending that most women start regular breast cancer screening at age 50, not 40. The recommendations do not apply to women with unusual risk factors for breast cancer, and the Task Force “encourages individualized, informed decision making about when to start mammography screening”. For the complete abstract, please visit http://www.annals.org/content/151/10/716.full.
At this time, Sharsheret urges each woman to consult with her health care provider about the method and frequency of screening that is appropriate for her, given her medical and family genetic history. For more information about risk factors for hereditary breast cancer, please contact Sharsheret’s staff genetic counselor, Niecee Singer Schonberger, M.S., C.G.C., at nschonberger@sharsheret.org or (866) 474-2774.
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.
There are two kinds of survivors-those who wish to keep their diagnosis private, and others who share the news. Initially, I was on the private side; but as time progressed, my secret revealed itself in a most natural progression. I guess I thought sharing my cancer diagnosis would make it real. As my friend's Dad is famous for saying, "Denial is not just a river in Egypt ". By the time I had no eyebrows or lashes, the gig was up. There was no denying. I no longer recognized the girl in the mirror. I needed lots of love and I needed it now! There was such an immediate outpouring of love and nurturing, and I drank it up. There's never a bad time to feel loved. Once I opened my heart and let everyone in, accepting rides, food, visits, lunches and laughs, we all became a community. The Community of Helping Malki Get Better. I learned that I always wanted to be in a warm and loving community, but it took a cancer diagnosis to put aside my independent streak and allow those surrounding me to feed me with love. If this is how I feel, I imagine there are a multitude of other survivors experiencing these feelings. Thanks to Rochelle Shoretz , we can all connect. I have so much admiration for Rochelle. Instead of burying her head under the covers, which I seriously considered, Rochelle successfully created Sharsheret as a link for all of us to unite and gather strength from one another. Sharsheret was the first phone call I made upon returning home from the doctor on the day my cancer was confirmed. Elana Silber, a friend for 40 years, calmly soothed me while I did nothing but sob on the phone. She connected me to Shera, who has been a constant source of support throughout my treatment. My last week of chemotherapy coincided with the Komen walk. What a meaningful way to culminate the past five months. With my close family and friends by my side, we slowly shpattziered, sauntered, through the streets of Manhattan and Central Park , taking in the crowds and the amazing energy of the day. There was a spirit emanating from every person there; a strength, courage and a determination to fight, support and be there for loved ones. By the time we reached the finish line, I didn't want the day to end. I felt like I could have walked a million miles with these people. Someone asked me recently, “What are the correct words to say to a recently diagnosed friend?” My answer was: Just call, visit, but don't fret over the words. My best messages came from people who understood I couldn't call back. When they said on my machine, “I’m just calling to let you know I am thinking about you, you don't have to call back”, I was thrilled. One more thing before I go: the High Holidays and cancer. This is the first time I really had to go into Rosh Hashana and Yom Kippur wondering, “Do I really want to have this conversation with the Holy One?” I remembered davening, praying, last year before I ever imagined I would have a health concern; it all seemed so routine and impersonal. Not this year. I felt there were two of us in the room, G-d and myself. It was scary and I am glad I can't read the future, because sometimes you just don't need to know.
by Susan Hessel (Also posted on Facebook) http://shessel.wordpress.com/2009/08/10/for-other-jewish-women/ I stand with Tevye Do you remember that scene in the musical Fiddler on the Roof when Tevye looks up at the sky and says to G-d, “I know, I know. We are Your chosen people. But, once in a while, can’t You choose someone else?” It’s a joke among Jews that we really didn’t need to be chosen in so many ways that we are. Now I get to add breast cancer to that list. Or do I? It’s certainly how I felt when my doctor called me a few weeks back and told me that she and the breast radiologist had been talking and thought that because of my “ethnicity” they should go one step further and I should have a breast MRI. “My ethnicity?” I asked. “Yes, didn’t you know that Ashkenazic Jewish women are at greater risk for breast cancer?” “I’ll convert,” I told my doctor, maybe only a quarter kidding at that moment. (And yes, I did tell my rabbi I said that. He laughed.) “I don’t think that will work,” my doctor said to my suggestion of conversion. “It’s hereditary.” “Ahh,” I said, “I’ll blame my parents.” Of course, to blame my parents, who are no longer with me, would be tacky and inappropriate. It would open me to similar feelings from my kids. They chose lousy parents heredity wise, but that’s another story. I am of Ashkenazic – Central/Eastern European Jewish descent. And yes, I do have breast cancer and am about to have a mastectomy. But who knows if it is genetic or something related to the environment or simply the flying fickle finger of fate (think Laugh-In television show in the 1960s).
I have talked with other Jewish women who didn’t know about this connection either. I decided to do some research. This summary is from the National Human Genome Research Institution: In 1995 and 1996, studies of DNA samples revealed that Ashkenazi (Eastern European) Jews are 10 times more likely to have mutations in BRCA1 and BRCA 2 genes than the general population. Approximately 2.65 percent of the Ashkenazi Jewish population has a mutation in these genes, while only 0.2 percent of the general population carries these mutations. Further research showed that three specific mutations in these genes accounted for 90 percent of the BRCA1 and BRCA2 variants within this ethnic group. This contrasts with hundreds of unique mutations of these two genes within the general population. However, despite the relatively high prevalence of these genetic mutations in Ashkenazi Jews, only seven percent of breast cancers in Ashkenazi women are caused by alterations in BRCA1 and BRCA2. I really, really, didn’t know about that Ashkenazic Jews were at higher risk. And, I have done more than my fair share of medical writing. It was probably information that I needed to know but wished I didn’t know. However, it’s not all that clear cut. Science Daily reported in 2006 on a study in the American Journal of Public Health that challenged “This population-based approach, warning that disparities in access to care and other unintended consequences for specific ethnic groups can result, and may have already occurred.” “The science of breast cancer genetics has been marked by methodological inconsistency in how researchers defined ‘Ashkenazi Jew,’” said study coauthor Sherry Brandt-Rauf, J.D., associate research scholar at the Center. Most scientists relied on study participants’ self-identification. Ashkenazi Jews are descended from Jews who lived in central and Eastern Europe, but a complex history of migrations, and multiple cultural and religious meanings of Ashkenazi, makes self-identification problematic.” At any rate, I was talking with a woman who had breast cancer several years ago and she only discovered after genetic testing that she was Jewish. (The geneticist wishes her a Happy Passover.” Her family had decided to become Christians after coming to this country at the turn of the 20th century. But it was funny, this woman remembered hearing Yiddish many years ago and understanding what the women were saying. At the time she thought she was clairvoyant. The Chicago Center for Jewish Genetics Disorders also discusses the issue. Here is its Summary of BRCA1 and BRCA2 Facts: ·Certain ethnic groups are at increased risk for having BRCA1 and BRCA2 mutations; three particular mutations are more common among Ashkenazi Jews. ·Women with mutations in BRCA1 or BRCA2 are more likely to develop breast or ovarian cancer but are not guaranteed to do so. ·A BRCA1 or BRCA2 mutation is more likely to be found in an individual with a family history of particular cancers. ·Women with BRCA1 or BRCA2 mutations are more likely to get cancer at a younger age than the general population. ·Men can also have BRCA1 or BRCA2 mutations, which puts them at an increased risk for prostate, breast, and some other cancers. ·A BRCA1 or BRCA2 mutation can also be passed down through the father so it is important to consider both sides of the family history. ·The decision to get tested can be very complicated. Talk to your doctor or a genetic counselor if you are interested in testing. What does this all mean? I guess to those of us who are Jewish women, we should be very vigilant. Get regular mammograms and don’t panic. Hey, that also applies to non-Jewish women. I didn’t think I had any family history of breast cancer, but my grandmother died of some kind of cancer when I was 3. My friend who had cancer and later discovered she was Jewish suggested there was no way of knowing if whatever cancer my grandmother had was lymphoma as we know it today. Then maybe the cancer was in the lymph and then spread. I’m going to ask for genetic testing. By the way, there is one Jewish breast cancer link that is confirmed: My certificate of Bat Mitzvah (with four other women at CSOA) from 2001 arrived on the day of my biopsy last week. And that link did not require millions of dollars in research to identify. J My mom and I used to joke about the expression, “Now is not the time to panic.” We wondered if they – whoever they are – would send out a memo or appear on TV and radio to announce, “Now is the time to panic.” At that point we would run in circles with our hands up in the air screaming. The good news is with technology, they can send the panic message via email, text, by Twitter and Facebook. I haven’t received it so far. And not that I would want to cause harm to anyone else, but like Tevye asked, “Once in a while, can’t you choose someone else?”
"If you asked me what I came into this world to do, I will tell you: I CAME TO LIVE OUT LOUD." - Emile Zola
Shortly after my cancer diagnosis, I began to receive good-hearted advice from my family and friends. They all wanted me to go to a support group, to reach out to people who were going through the same plight. Why? Because my circle could not relate to me, they did not think they could comfort me or support me like those with cancer could. After all, how many 32 year-olds do you know with Stage III breast cancer? I was the only one that I, myself, knew and I wanted to keep it that way. For me, I knew that it was critical to keep going at the same pace. My strength came from the living, so at each chemotherapy session, I would sit with friends who all took time from their busy schedules to join me for a round of infusion, cupcakes, funny stories, and lots of laughs. We would laugh so hard and so loud that I remember saying one time, “Guys, we have to be a little quieter, there are sick people here.” Honestly, it was only when they stopped laughing and looked at me that I realized I was one of those sick people. It was time to reach out for help when I knew that a double radical mastectomy was the next course on the menu to health. I became desperate to speak to someone who could help me accept the surgery as treatment and understand what life would be like afterwards. It was then that I reached out to Sharsheret and spoke to a clear-minded, sympathetic, and strong-willed Clinical Supervisor, Shera Dubitsky. In one swift month leading up to my surgery, I was able to grasp the concept of my illness and finally understand that I was, in fact, sick and needed this surgery and subsequent treatment to survive. With Shera, I was able to speak about G-d, not speak about G-d, to cry, to laugh, to grieve, to accept, to move on, to learn to be happy with my “new normal” self. Reaching out to Sharsheret was one of the most rewarding experiences I had, and I cherish the generosity and kindness that I received. It was the only organization I contacted, and for me, luckily and gratefully, it was the right one.
My story goes something like this: I took my dog for a walk one beautiful August day and came home with breast cancer. Yep, that's exactly what happened. I was living my life, getting ready to go out of the country for business, and then…BOOM! Bella, my dog, tugged sharply on my arm during our walk and pulled out a massive tumor from my left armpit. To be more specific, she jerked me off the ground and what I initially thought to be a bad sprain or a torn muscle, ended up being a large mass hanging out of my left armpit. After the biopsy, we heard those haunting words that suddenly transformed our lives, breast cancer, Stage III. Yikes! I was only 32 years old, with no family history, no kids yet (after two years of trying unsuccessfully). I thought to myself, they must be JOKING!
The avocado-sized mass that my dog pulled out of my armpit was a lymph node that was already engorged with cancer. And so I was thrust into chemotherapy a few days after diagnosis. There was no time to wait, no day to waste before beginning treatment. I was told that chemo might kill my chances of ever having children, but I needed it to live today. I was told that it might cause other cancers later in my life, but I needed it to live today. I was told that it might give me heart failure in the future, but I needed it to live today. There was NO OTHER CHOICE for me. Before each treatment, I asked if they were sure that I had cancer. I sounded like a fool, but I just wanted to make sure they weren't pumping me with poison for nothing! That makes me a chemo veteran, and for those of you who are in my good company, you know that it is a war. And so I had to quit my newly-scored, travel-intensive job with a top advertising agency and assume my new role as the CEO of my cancer treatment.
I am convinced that the ONLY reason I survived this ordeal thus far, and mostly intact, is because my family and friends willed me through it. Every chemo session was a little party. Every other week as I sat in the NYU Cancer Institute, I was surrounded by my family and friends. My husband, Danny, became my rock. My parents put their lives on hold and would drive up from Virginia; my pals would drive up from surrounding states. My friends would show up and surprise me with food, with gifts, with manicures, with all sorts of tokens. We joked, we laughed, we looked at old pictures and silly magazines, we were just us, in every sense, and at no time did anyone show me pity. Their presence alone was the only inspiration that I needed to keep moving forward. Somehow everyone knew just what to do, just what to say and what NOT to say. People were flying in from as far as California and Amsterdam to sit with me through chemotherapy, to cheer me on. How could I ask for more? I would sit there with the drugs flowing into my arm and just marvel at how all of my worlds were colliding. My friends from all of my former lives were becoming friends with one another. It was a gift to me; it was the ultimate happiness and peace. In those moments I felt so loved, so lucky.
Even though I am an Ashkenazi Jew, my oncologist was almost certain that this was not a genetic cancer and recommended a lumpectomy. “Okay, I can handle that,” I thought. The only thing we were waiting for were the results of genetic testing, which was done while I was undergoing chemotherapy. I tested positive for BRCA 1 which meant that the cancer was, in fact, genetic and would return with great certainty in my lifetime. My medical team quickly recalculated all the odds and strongly recommended a double radical mastectomy. I was in my early thirties and they wanted to give me every chance possible to beat this particular cancer.
And so, that is what I did, with great difficulty. Difficult, not because of vanity, but because it was yet another hurdle to overcome and because I was afraid of losing a piece of myself, both literally and metaphorically. I could not wrap my head around it no matter what I did, not that I had much time. I finished chemotherapy on December 9, 2005 and on January 11, 2006 I had the surgery. Both breasts were removed as well as 14 lymph nodes from my left armpit.
All of the treatment, physical therapy, and surgeries took nearly two years. I was in full-blown menopause experiencing hot flashes, irritability, mood swings. My oncologist, knowing how much we wanted a child, said that he would sign all of the adoption papers we needed. Another oncologist of mine actually offered to be a surrogate for us. Friends stepped up to be egg donors. It was overwhelming and we were moved. The research for adoption options lead to dead ends from a financial perspective and also because the adoption agencies usually require that the cancer patient is in remission for at least 5 years before being approved. We looked into many options, and decided that we would become parents regardless of how it came to us. Then we dropped the issue.
In January of 2008, Danny and I returned to Israel to visit his family. We had not been there in three years because of the cancer treatment and the surgeries that followed. Although I did not grow up religious, I did want to go to the Holy Land and give thanks for surviving my cancer. That was my heartfelt wish, and I knew exactly what I wanted to do. I had a 2-part mission - I wanted to go to the mikvah and spiritually cleanse myself from the disease, and I wanted to go to the Kotel and give thanks to G-d for having survived the disease. And I did just that.
I went to the mikvah on January 16, and we went to the Kotel on January 17, 2008. Sometime between the mikvah and the Kotel, I became pregnant. My oncologist, upon hearing the news, told us that I was not far enough away from the cancer, that I needed to wait at least three years (it had only been two) before even thinking about trying. He told us that if we wanted to do the right thing for my health, then we would terminate the pregnancy. It was a very sad conversation for him and for us. Very quickly, I decided that I would not strip myself of this unbelievable gift and that we would deal with whatever came our way when and if it did.
We did not know what to expect from the initial baby ultrasound. Would we hear something, would we see something? Were we really pregnant, or would the ultrasound show us that this was just a dream? The technician looked at her screen and we looked at the monitor hanging from the ceiling. She was talking nonchalantly but we hung on to her every word. When she found the heartbeat she said, "There's one, and there's the other one. You have two babies!" WHAT!?! That's when time stopped and the room started to spin. It was the most defining moment of my life. Twins, it was unbelievable. My dear oncologist, who I adore, jumped on the baby train as soon as he heard that it was twins. My oncologist told me that I was his first patient to conceive post-treatment. The nursing staff told us that the entire cancer institute erupted in happiness when they heard about my pregnancy. We were so happy to share this pregnancy with everyone, to finally share and enjoy good news for once!
My oncologist and his nurse came to visit us and meet the babies in the hospital. To see my doctor hold my daughters was the full-circle moment that I hoped for but never imagined. It was magical for all of us.
And so, I write my story here to say that there IS hope. There IS life after cancer. I am beyond fortunate, and I realize that every breath is a gift. I am in love with my life. And every time I walk in my neighborhood and pass the intersection where my dog pulled my arm that day, I look up into the sky and I say sometimes to myself, sometimes aloud, "THANK YOU G-D! Thank you Bella!"
Wednesday, July 22, 2009
Words cannot express the positive energy we are feeling here at Sharsheret! In just 8 weeks, Team Sharsheret will once again join thousands of women, men and children in Susan G. Komen’s Race for the Cure! We already have 100 runners/walkers signed-up to participate on Sunday, September 13th in NYC’s Central Park. Last year we had over 700 individuals join our Team. Our goal this year is to surpass that number and once again win the largest Race Team award! It's easy to join, visit http://www.komennyc.org/, click “Race for the Cure” then “Join a Team” and select “Sharsheret”. To order your Sharsheret T-Shirt or Tank top click here.
Feel the energy and be sure to join us on Race Day!
This summer, I have the privilege of serving as the Sema Heller-Netivot Shalom intern at Sharsheret. The internship is funded by the family and friends of Sema Heller, a New Jersey mother of two who lost her battle to breast cancer in 2004, and provides a unique opportunity for a social work student to work directly with Sharsheret’s Clinical Supervisor, Shera Dubitsky, MEd, MA. I will be attending Hunter School of Social Work in the fall, and this internship is the perfect way to prepare for graduate school.
Working with Shera has been an incredible experience. I spend a significant part of each day learning the skills necessary for counseling women with breast cancer, and she is truly an excellent mentor. In addition, I am involved in a variety of meaningful projects that have a measurable impact on the quality of the services Sharsheret provides to Jewish women and families facing breast cancer across the nation. In the past few weeks, I have worked on updating Sharsheret’s resources for the Embrace and Family Focus Programs and have done research on ovarian cancer in anticipation of Sharsheret’s expansion into serving Jewish women facing ovarian cancer. I also represented Sharsheret at the Chabad On Campus International Foundation Resource Fair, where I met representatives from college campuses nationwide and promoted the Sharsheret on Campus Program.
I feel like I am truly a member of the Sharsheret team and that my presence is noticed and appreciated. The environment at Sharsheret is warm and full of energy and creativity. I especially enjoy the visits from previous Sharsheret interns who are now regular volunteers. I am so happy to be a part of Sharsheret and I look forward to seeing what’s in store for the rest of the summer!
Good afternoon and, on behalf of the Board of Directors of Sharsheret, thank you for being here. I am Rochie Shoretz, Founder of Sharsheret and President of the Board. In these challenging economic times, we so appreciate your continued support of Sharsheret – a support that is even more vital this year for women and families facing costly medical challenges of their own.
Not many people can claim that they enjoy Board meetings of any kind. But over the years, I have had the privilege of working with an incredible group of men and women who have helped shape Sharsheret’s growth in a way that is truly inspiring. This past year, our Board of Directors undertook an extensive strategic planning process to map out the expansion of our organization to address the needs of Jewish women living with ovarian cancer, and we look forward to sharing the results of that effort with you all in the years ahead. Please join me in thanking my fellow Board members for their tireless service and their selfless dedication to Sharsheret: Sherry Cohen, Keith Mendelson, Amy Mines Tadelis, Tani Mirsky, Dana Norris, Jacob Plotsker, Nikki Sausen, Ariel Schochet, Naomi Spira, and Lauryn Weiser. None of our grand ideas as a Board could be implemented without the Director of Operations at Sharsheret, Elana Silber, who keeps us on track and moving forward, and always with a smile – no matter how great the task. And anyone who has met our staff and our interns – Shera Dubitsky, Ellen Kleinhaus, Rebecca Schwartz, Michael Lowy, and Malke Grunberger – knows how truly blessed we are at Sharsheret. Please join us in thanking Elana and the staff of Sharsheret for today’s beautiful event and for all of Sharsheret’s meaningful programs.
When I look around this room and see all 450 of you, it is hard to imagine a time without Sharsheret. But 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.
You are all a part of that Sharsheret family. And, as with all family, we will share good news and we will share sad news. I know that my latest diagnosis is difficult for all of us, and the staff and I thought long and hard about how and when we would share that news. Eight years ago, there was nothing more frightening than the thought of being diagnosed with advanced breast cancer for which, as yet, there is no known cure. But I want to reassure you all that, like so many of our Sharsheret callers diagnosed with Stage IV breast cancer, I am living and enjoying life, one day at a time.
A friend recently invited me out late at night and though I'm always game for fun, I replied via text that I couldn't meet because I was "headed to the DR" the very next day. Two days later, I received a very thoughtful email from the same friend who wanted to know how my doctor's appointment had gone. "I'm on vacation in the Dominican Republic", I texted back. "DR", as in "Dominican Republic" - not "doctor".
The moral of that true story is: I'm living life. I'm not lying on an examination table every day. Sometimes, I'm just lying on the beach. Yes, I am busy with treatments and scans, and I spend lots of time in waiting rooms. But I will continue to weave all this into the fabric of my REAL life - a life that is full of laughter and overflowing with the love of friends and family – my sons, Shlomo and Dovid, my parents and siblings, and of course, my Sharsheret family.
Our guests of honor today – Rochelle Hirsch and Naava Parker - formed their own unique family and, together, created a resource to help other families with young children who are facing breast cancer. Rochelle and Naava, both breast cancer survivors, were introduced by a mutual friend and co-authored “Lumps and Bumps”, a book for children that has recently been purchased by Memorial Sloan Kettering Cancer Center for its youth support program. Like all of Sharsheret’s links and callers, these incredible women began as strangers, but became fast friends, as they used their talents and their shared experience to help others facing the same challenges they had faced years ago.
This is not Rochelle’s first entrepreneurial endeavor. The founder of the 18 year-old Creative Playschool at Fifth Avenue Synagogue and its current chairman, Rochelle and her husband of 37 years, David, were also the original founders of the Upper East Side Hatzolah.
Naava has served as a Sharsheret link for many years and, with her family in Englewood, has been active at the UJA, Emunah, Congregation Ahavat Torah, Ramaz, and the Moriah School.
Naava Parker and Rochelle Hirsch are stellar examples of women who use the experience of their own difficult journeys to smooth the path for those walking behind them. I know firsthand what an impact a book like theirs can have on a family struggling with breast cancer. The morning of my most recent surgery, I woke up to find my boys reading “Lumps and Bumps” to each other at the breakfast table. Naava had thoughtfully dropped off an advance copy of the book at my home, and the boys flipped through the pages as they prepared to start their day. I know that the book reassured them that breast cancer happens to lots of other families. But more important, “Lumps and Bumps” reassured me, their mom, that my childrens’ experience had been validated.
Rochelle and Naava’s undertaking in light of their own experience is an inspiration to all of the women of Sharsheret. They have continued the Sharsheret tradition of turning adversity into opportunity. For their contribution to the breast cancer community and to the community of women and families we serve, Sharsheret is proud to recognize Rochelle Hirsch and Naava Parker.
Rochelle Hirsch My Journey Guest of Honor Sharsheret Benefit Luncheon 2009
It was Tuesday, May 28th 2002 For a routine mammogram I was due I will never forget that look of shock and surprise As my doctor couldn’t believe what was before her eyes
Breast cancer was not what I had in mind Colon cancer was more my family kind How could this happen to a woman like me Breast cancer is non discriminatory- it knows no boundary
I looked at my husband with tears in my eyes Begging him to make it go away, as I started to cry But there was nothing that anyone could do I began the journey my entire family was forced to go through
My life was thrown into chaos, crisis and transformation Margins, lymph nodes and biopsies became my conversation And just when I thought it couldn’t get any worse Mastectomies and chemo became my new verse
The chemo had to be given quick and strong And then it didn’t take very long 17 days later, I truly was in despair 17 days later, I had lost all my hair
I was a woman who put emphasis on looks Did I have enough substance, had I read the right books Would people be uncomfortable, could they look me in the eye Or would they be thinking, “If it were me, I’d want to die”
The pain and humiliation that I went through Known only to a special few The calls from people wanting to meet me just to see Didn't they realize how I needed my space and privacy
My life was thrown into disarray, but I made a vow That my three children would never know how Difficult it was to greet each day with a smile How difficult it was to go that extra mile
Shabbos dinners at our home were a sight to see David, Jason, Jeffrey, Stefanie, Casper and little bald me Each week with a different colored ribbon tied around my head Each week with so much love unspoken, unsaid
I was fortunate to have my husband David by my side Steadfast, strong and supportive during that bumpy ride Never making me feel self-conscious, in fact telling me with great zest That my old breasts were never winning any beauty contest
So now I’m perky as I can be But when I hear the word “Survivor” it has a different connotation for me When life throws you lemons, you make lemonade And believe it or not, bad memories do fade
Before I had cancer, I had insecurities and self doubt Now I may not know the answers, but I try to figure things out And making the effort to do one good deed every day Gives me the greatest pleasure in every conceivable way
“Lumps and Bumps” was written from my heart To help those families whose lives are falling apart Perhaps I was chosen for my journey so I could help By giving others this part of myself
You can go through life and never be changed Or you can have your world un-expectantly rearranged The language of experience that I was forced to learn Has given me the gift of doing something positive in return
Naava Parker Guest of Honor Sharsheret Benefit Luncheon 2009
No one asks for breast cancer, I certainly didn’t. I even used to joke that had anyone asked me I would have responded, “No thank you, I’ll pass.” No one ever asked.
We don’t know what life has in store for us from one second to the next. We have little control over anything. The only thing we do have control over is how we deal with what gets thrown at us. When I found out that I had cancer I had to make a conscious decision on how I wanted to handle it.
If I got better, did I want to waste a year of my life being sad and angry, or find what made me grateful be happy and take the lessons that I learned to better my life.
I chose happy and I can tell you it wasn’t easy. The way I looked at it –there is no down side to being happy. That is not to say that I didn’t have my moments of sad and miserable but I found happy was a much better place to be. I believe it was this first decision that helped my family and me get through this with faith and optimism, making each day count.
I felt lucky for so many reasons; I had a family that was so supportive. My husband Jeffrey went to every doctors appointment helped to get me to the doctors that I needed to see, took care of more things than I can even list-------. My children David, Jeremy and Sabina were there to love me (and to give me a purpose). My mother also went to every appointment, became another set of ears to remember what the doctors had said and made me laugh even when there was nothing to laugh about, a real gift ------. My father (alav Hashalom) made sense of all the medical information and researched all the different decisions that were necessary to make, along with the help of my brother. My sister was my personal shopper; chef and confidant--------- My sisters-in-laws and brothers in-laws were there for anything that fell through the cracks. I had a community of friends and family that showered me with care.
I was also very lucky that I was connected to three wonderful woman who when I called picked up the phone and were generous with their time and advice even though we had not as yet met. My Sharsheret women, Jessica Gribetz, Marci Cappel and Rochelle Hirsch, I can never thank you enough for all that you have done for me. Because of how grateful I was for all of your help to me I now speak to other newly diagnosed women in the attempt to help them as I had been helped by you.
Since being diagnosed with breast cancer I have spoken to many woman and have learned that we all handle our diagnoses differently and we all have a right to the decisions we make for ourselves. Many women prefer to keep their diagnoses of cancer to themselves and for these woman there is little or no support. For these women Sharsheret plays an invaluable role. They can get linked to someone who will speak to them, give support and keep their confidence.
Sitting in the chemo chair for the first time surrounded by family, I felt so grateful and I remember making a vow that should I get through this I had to do something positive with this experience. It was in that chair that the idea for a book developed.
(I want to thank my cousin Shera Tuchman for introducing me to her friend Rochelle Hirsch. I want to thank Rochie (the founder of Sharsheret) for getting Rochelle and me to get this book out of my book bag, to see the light of day. Things happen for a reason - at least I think they do. As I was sitting Shiva for my father, Rochie and Rochelle were seated next to each other at a luncheon where Rochelle showed Roche our book, and here we are today.
Lumps and Bumps was a collaborative effort. I had done some research for another book idea and found out that there were no children’s books for children whose mothers had breast cancer. Being mothers ourselves and knowing first hand how hard it is to share a breast cancer diagnoses with our own children we knew how helpful a book on this subject would be. I mentioned the need to Rochelle and she replied, “I can do that! I write poems for people’s simchas”. Within a week she had written a story in verse. She then called me and said “you’re artistic - would you illustrate it?” I had never illustrated anything before. I didn’t know if I would be able to, so I tried, and many, many pictures later I am an Illustrator! Together we worked on the story the words and pictures. Two years, and many revisions later we have a book! As the book developed so did we. I know that I can speak for Rochelle and tell you that we feel very proud of this book. We put our hearts and souls into LUMPS AND BUMPS. Our hope is that this book will help the many families facing breast cancer, to help them at a very difficult time, by giving them the tools to start a dialogue and to let them know that they are not alone. It is sensitive to both the mother and the children they will read it to. This story belongs to many, and we hope this book can serve as a guide.
In closing I would like to quote my mother quoting my grandmother ------------------------- G-d’s salvation can happen in the blink of an eye. Good health to us all! Thank you so much for coming and supporting Sharsheret.
Suffy Rudman Lisa Altman Volunteer Tribute Award Sharsheret Benefit Luncheon 2009
Every person has a unique way of expressing their emotion. Some people laugh, some people cry, and some do nothing at all. I sing. It is the way I express my feeling, spirit and character. Music has always had the power to touch my soul, and singing has always been my most expressive tool.
A few years ago I learned that my dear friend was battling breast cancer. Wanting to help her in any way I was able, I started attending the Sharsheret breakfasts. Year after year, I was truly inspired by the strength of the women involved in Sharsheret. Not only were the survivors courageous and exceptional people, but the leaders and volunteers of the organization were just as impressive. The dedication and the manner in which their services were being presented, was truly remarkable. I remember one year sitting at one of these tables thinking to myself- how can I contribute to all of this? The only inspiration that I knew how to provide was with my music, my singing.
And so, I decided to fulfill a dream that I had always had, and just needed the right motivation to accomplish - I recorded an album. I pulled together a collection of inspirational and uplifting songs for the album, believe, and worked on its recording for several months. With financial backing from family and friends, the album was released in June 2005, and all of its proceeds have gone to Sharsheret. Every time I perform and everywhere I go, people have come to learn about Sharsheret - and that, perhaps, has been my greatest contribution- just spreading that knowledge. For if just one person has been able to benefit from the gifts of Sharsheret, then that is one person who does not have to fight this battle alone.
So I thank you today for giving me this honor, but in reality, I am so grateful to all of you for letting me be a part of this wonderful organization.
I wouldn't be able to accept this without acknowledging my dear husband, Yaakov, without whom I never could have followed my dreams. We both know that I never could have done this without your ongoing support and encouragement. To my dear children, thank you for letting me take the time out for my singing and thank you for letting our house be one that is always filled with music. I want to thank my family, my parents, my sisters, and my dear friends, some of whom have travelled so far to be here today - your presence means the world to me - And lastly, I dedicate my music to those brave and courageous individuals who battle this disease. I hope that in some small way my music brings you joy and comfort, and gives you the strength to keep fighting.
And again, thank you to Sharsheret for this very heart warming honor.
Wednesday, March 25, 2009
By: Diane Becker Krasnick Sharsheret National Advisory Board member
I just received a copy of your newsletter and was quite pleasantly surprised at its content. I have no idea how I got on your mailing list, but I'm thrilled to know that a group like yours exists I am BRCA 1 positive and am an 8 year survivor of stage 3b breast cancer with 20 positive nodes. I had a bilateral mastectomy, bilateral oophorectomy, 18 months of weekly chemo and 5 weeks of daily radiation. I was also one of the 1000 women included in the clinical trial for Herceptin. Before I moved here [St. Thomas, US Virgin Islands] 2 years ago from Madison, Wisconsin, (to become the Cantor at the Hebrew Congregation of St. Thomas), I gave a number of presentations about Jewish breast cancer hereditary issues and the BRCA mutation. Also, check out my personal breast cancer website: http://www.onlydiane.com/. I would love to be a Sharsheret Link!
Tuesday, March 24, 2009
By: Nira Berry Sharsheret National Advisory Board Member
Sharsheret was well represented today at the press conference at the Capitol! It was really moving when Congresswoman Wasserman Schultz gave her background to the press today. There wasn't a dry eye in the room, including the Congresswoman herself, when she spoke of her own experience this year battling breast cancer. She had me and the other breast cancer organizations stand next to her (maybe you can catch her press conference on TV) and spoke to me afterwards about Sharsheret. I attached a photo! (I am on the left)
By: Nira Berry Sharsheret National Advisory Board Member
Wow! Meeting with Congresswoman Debbie Wasserman Schultz (FL) today was very interesting and exciting! I'm so happy to learn about this Legislative bill that she is proposing to be passed by Congress. Its nickname is "The Early Act". This bill is proposing nationwide early detection, early education, early information -early everything! The bill is also proposing grants to organizations that support young breast cancer survivors. It's gotten approval already by the CDC and they are planning for this to have a major impact as far as educating the public as the anti-tobacco campaign did years ago. I can't tell you how happy I was that this is finally being done! This is a photo of me (in the middle) and a few other organization representatives such as Hillel, BBYO in front of the Rayburn House Office building where the meeting was held.
I am a breast cancer survivor, and recently contacted Sharsheret, because I would like to become a link.
Like an invincible teenager, I was never going to get cancer. This mind set led to almost never doing self breast exams, and waiting 3 years between routine mammograms. What a shocker when that routine mammogram in August 2007 (at age 44) led so quickly to the diagnosis of the big “C.”
We dreaded telling the kids, but couldn’t delay, as we were worried that they would hear about it inadvertently from a phone message. They took the news better than expected, and offered many words of encouragement. Our son, who had just turned 12, approached me in the kitchen to say “It sucks that you have cancer.” Our 7 year old daughter wanted to feel the lump, although with her one tiny pointer finger, she wasn’t able to really feel anything. Then for the next few days, she approached me often to say “I’m sorry you have a bump, mommy,” and “How did you get that bump?”
Being active duty in the Navy, I received my medical treatment at BethesdaNationalMedicalCenter. I was blessed with an excellent and compassionate medical team, everyone from the doctors, my nurse case manager, the hospital corpsmen, and the humorous therapists in Radiation Oncology.
I learned a lot about my family, friends and acquaintances during this time. Some found it uncomfortable to talk with me, but many of my relationships deepened tremendously during this time, and it still brings tears to my eyes to think of the overwhelming support and love that I received from family and friends.
By: Ellen Kleinhaus, Ed.M., M.A Project Manager, Sharsheret
Tomorrow night Sharsheret is presenting a Free National Teleconference, “Take It From Me: Recording My Experiences in My Own Way” from 8:00 – 9:30 P.M. (EST). We are excited to have three guest speakers:
Linda Blachman, MPH, MA, Founder and Executive Director, Mothers, Living Stories Project speaking about writing and recording your life stories.
Janet Ruth Falon, MLA, Creative Writing Teacher, University of Pennsylvania, discussing the process of journaling through breast cancer as a means of self-awareness and self-expression.
This is my first post on the Sharsheret blog; hopefully it will be my first of many. Sharsheret has gone from being an organization that I always heard about from my mother and read about in the Jewish Standard, to an active part of my life. This past summer I was one of the Sema Heller-Netivot Shalom Interns and it gave me the opportunity to join the Sharsheret team forever and truly make a difference. My experience at Sharsheret was so much better than I could have imagined. I learned so much about the fabulous programs and support Sharsheret has to offer to young Jewish women facing breast cancer and all of the volunteer opportunities that they provide for individuals to make a difference in their own way. I am now back in college, at the University of Maryland, but my Sharsheret work has not ended. This past semester I co-chaired “Manicure for a Cure”, which was an event through Hillel and several other campus organizations held on campus and all proceeds were given to Sharsheret. What girl could pass up a cheap manicure and an opportunity to give charity?! We had a wonderful time! The Sharsheret video was streaming on screen and the room was decked-out in pink; pink M&M’s, pink lemonade, pink napkins and we had great Sharsheret giveaways and booklets. I look forward to planning more Sharsheret events here at school, spreading the word about this wonderful organization and getting more people involved!
By Niecee Schonberger, MS, CGC, Genetics Program Coordinator, Sharsheret
As a Genetic Counselor, part of my job is to construct family trees with information about medical history, ages of onset of various conditions, etc. of family members going back several generations. It’s amazing how many people don’t know what Grandma Leah died of, how old sister Sarah was when she was diagnosed with cancer, what caused the death of cousin Jacob at age 7, how many children aunt Millie had, and so on. Why is this important? You ask.
It’s important because your family history gives the best idea of whether a condition, such as breast cancer, may be inherited or is simply the result of sporadic, individual factors, which is the case in 90-95% of breast cancers. If it seems to be inherited, then genetic testing may be helpful. If it’s sporadic, genetic testing may be a waste of time plus a lot of money.
So, here’s a plan. In just about every family, there’s a “family historian”, someone who knows all about everyone. If you sit down with her or him, you’ll probably get an earful and learn things you never knew, but along with the tidbits and the gossip, you’ll learn the useful, and sometimes surprising, information that can be important when you try to gauge whether there is a genetic susceptibility in your family. What have you learned about your family that you never knew? How did it help you?
Please join us tomorrow evening, Tuesday, January 6, 2009, 8:30-9:30 p.m. (EST), for our Get Connected Link Training Teleconference. During the Teleconference, Sharsheret's Clinical Supervisor, Shera Dubitsky, will offer guidelines for serving as a peer supporter, resources to share with other women facing breast cancer, and a role play simulation. Manager of Volunteer Services, Rebecca Schwartz, will review the various ways you can use your experiences and skills to Get Connected in your community. The Teleconference will conclude with a Question and Answer Session, during which we will address many of your questions about serving as a Link. To access the Teleconference, please call Sharsheret for more information at (866) 474-2774.
Almost immediately after I recovered from my TRAM (reconstruction) surgery, I knew that I wanted to be a Sharsheret Link. The surgery was the most life altering thing, but getting through it and recovering made it all worth it. I wanted to be able to help prepare another woman for this and hopefully let her know she would get through it and come out a stronger person.When I got the call from Shera Dubitsky to become a Link to Marcy, I was in the middle of relocating my family to another state and starting a new job. However, there was no way though that I would turn down the opportunity of helping another survivor. Marcy was going to have the same surgery as I had. She explained that she was an active woman with an athletic build and had to gain 30 pounds for the surgeons to harvest some fat for her new breasts. We would joke- she was trying to gain 30 and I was trying to lose 30 - we could swap closets!It was great talking to Marcy. We are both strong women who share a good sense of humor and are able to laugh in the face of adversity. I really hope that I was a help to Marcy. I know she was a help to me. I found her strength to be awesome and inspiring. The only thing that gets me though is that I'm still working on those last few pounds and I bet Marcy has lost all of hers!!
Sharsheret is a national organization of cancer survivors dedicated to addressing the unique concerns of young Jewish women facing breast cancer. Sharsheret, Hebrew for "chain," was founded in 2001 by Rochelle Shoretz, a former Law Clerk to United States Supreme Court Justice Ruth Bader Ginsburg, who recognized the need for a breast cancer organization that would provide culturally sensitive support for Jewish women after her own diagnosis at age 28. Since the organization's founding, Sharsheret has responded to thousands of phone calls from health care professionals, Jewish organizations, women's organizations, women affected by breast cancer, their families, and friends. Sharsheret's efforts to support young women and educate health care professionals have been recognized with prestigious awards and significant media coverage.
Sharsheret's genetics poster abstract, To Test or Not to Test: The Influence of Ashkenazi Jewish Ethnicity, was chosen for display at the International Symposium on Hereditary Breast and Ovarian Cancer and was published in the October edition of Current Oncology.
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