Our Voices: A Blog by Links, Callers and Volunteers

Meaningful and Motivating

Judy Zwillenberg and Sharon WeiderThis summer, the goal of my internship was to expand Sharsheret’s Ovarian Cancer Program. Ovarian cancer can be difficult to detect, since many of its symptoms can be attributed to common illnesses. As a result, most ovarian cancers are unfortunately diagnosed at advanced stages. Additionally, there is not enough information available for women newly diagnosed with ovarian cancer or for ovarian cancer survivors; but Sharsheret plans to change that. My main project this summer was to develop a Thriving Again survivorship kit for ovarian cancer survivors. The kit provides women with the opportunity to learn more about survivorship and to create a personalized survivorship care plan. Women can request culturally-relevant information that is tailored for their ovarian cancer journey, such as materials on the fear of recurrence, caregiver support, and exercise during treatment. This kit will bridge the gap in available information for ovarian cancer survivors and provide women with the support they need during their ovarian cancer journey. The Thriving Again kit is now available for preorder, so contact Sharsheret if you’re interested in receiving your kit this fall.

To spread the word about Sharsheret’s Ovarian Cancer Program, I also developed a plan and conducted outreach to prepare for Ovarian Cancer Awareness Month in September. I was in contact with hospitals that serve women with ovarian cancer, organizations having events in September, and other groups interested in learning more about Sharsheret. These connections foster collaboration with other ovarian cancer organizations and disseminate information about Sharsheret to communities across the country. Hopefully, more women will know that they can turn to Sharsheret for ovarian cancer resources and support.

Working at Sharsheret this summer has been especially meaningful and motivating for me, as I started my internship one week after the passing of Rochelle Shoretz, Sharsheret’s founder. I have seen firsthand how Sharsheret continues to go above and beyond to provide meaningful support to women during this difficult time. I feel privileged to have been a part of Sharsheret’s dedicated and passionate team, and look forward to seeing Sharsheret continue to grow and serve women facing breast cancer and ovarian cancer.

Swim – Bike – Run – Repeat

If someone had told me that one day I would run to spin class, spin, and then run three miles home, I would have thought them insane. Yet, that was just one training day of many in preparation for the 2015 NYC Triathlon. Three years ago, I was diagnosed with breast cancer and in addition to the typical fears, I thought I would lose the one thing that defines me - my vitality. Not in an athletic sense, but in the energy I brought to my work, my family, my life. It was an extremely difficult time, but with the support of wonderful friends & family and amazing organizations like Sharsheret, I was able to regain my good health and am now stronger than ever.

Along the way, it was not uncommon to hear from others that my situation was “not fair.” I was relatively young, I took care of myself, and I had so much more to accomplish. However, I came to understand that what’s really unfair is the person who is diagnosed with cancer and does not have a support system in place – no friends to lean on, no family to rally around, no resources to provide what’s needed – that’s not fair. So, as part of Team Sharsheret, I will swim in the Hudson, bike the West Side Highway, and run in Central Park not only as a personal victory over cancer, but to show other women going through the same ordeal that they are not alone.

The Key To Being A Good Link

I was diagnosed with breast cancer almost 10 years ago and have been fortunate to be a part of the Sharsheret family since my diagnosis.

While I have been a link many times, I have been a caller only once. When discussing my experiences as a Sharsheret link, I have to first think back about my one call to my link and what made the conversation so good for me.

I was given the name and number of my link shortly after my diagnosis and as you can imagine, I was eager to speak to someone who had been through what I was yet to experience. When I called, I was greeted by a warm voice on the other end of the line. It had been 5 years since her diagnosis and she was cancer free and feeling great. I asked many questions and my link answered them to the best of her ability and from her perspective.

Thinking back to that conversation, it had a profound impact on my approach to my medical treatment and on my prognosis. The crazy thing is that today I do not remember my link’s name and we only spoke once.  So what made her such a good link and what lessons did I take away from our one and only contact?

The key to being a good link is to be a good listener. Many of the callers that I have spoken to have wanted to tell me their story, but even more so, they have wanted their questions answered. I try to listen to what they are asking and to not give them too much information or information that is not relevant, as not to overwhelm them.

Another important aspect of being a link is honesty. There is no sense in sugar coating what might be difficult down the road. On the other hand, being honest that certain things may not be as bad as would be expected is okay as well.

Another important aspect of being a link is to not feel like you have to have all the answers. As a link, you want to be able to have all the answers but I have found that that is not always the case. There have been times where I did not have the information the caller was requesting and the best thing to do in that situation was to be honest, and recommended that they call Sharsheret to help them with those issues.

What I took away most from the conversation with my link so many years ago, and what gave me strength to face the difficulties ahead was that she was 5 years passed her diagnosis, and leading a happy and healthy life. For me to know that someone who had the exact same diagnosis that I had and treatment I was about to experience was a survivor, was of upmost comfort to me and incredibly empowering. Though I do not say these things to callers, I hope that I convey these feelings – you will get through this and hopefully be a stronger woman for having gone through these difficulties.

A Eulogy for Rochelle A”H: The Ride of a Lifetime

Before I begin, I would like to say a few things to Rochie – I want to ask for mechila (forgiveness) for anything I may have done and said. I would also like to share my immense gratitude for everything you have taught me and shared with me these past 13 years and, finally, I want to reaffirm what you already know, that I, along with the Sharsheret Board and staff, will dedicate ourselves to continuing the critical work you loved so much. Last week you said to me, “Sharsheret is saving my life. It is one of the last things that brings me true hanaah (pleasure) in my life”.

Working with Rochie was the ride of a lifetime, challenging me and the amazing team at Sharsheret to accomplish more than we could have ever imagined. She made the unthinkable a reality. Rochie had a vision – to create an exceptional organization (she would not accept mediocrity), an exceptional organization to support Jewish women and families and provide them with the support when they needed it with dignity, with professionalism, with compassion. In just 14 years, Sharsheret has grown from a handful of volunteers to the premier national organization for Jewish women and families facing breast cancer and ovarian cancer. But 14 years on Rochie time is not even 25 years in regular time. She was the ultimate motivator and if you were joining that ride with Rochie you had to understand that there was no time to waste when it came to caring for the women and families of Sharsheret and educating the community at large. But at the same time, she would emphasize the need to literally block out time to think; to make sure what we are doing is right and everyone who connected to Sharsheret is important, is a link in the chain. The answer at Sharsheret is always yes, we can help. Following Rochie’s lead, no email goes unread, no text unanswered, no Facebook post ignored.

Speaking with Sharsheret Board members last night, we tried to describe what it was like to work with Rochie. Linda described Rochie as something like a magnetic field that drew everyone to her to join her in her efforts. And, while she was persuasive, Dana added, she also respected those who would challenge her. In fact, Rochie would take conflict and turn it on its head. She taught us that we don’t shy away from conflict, we confront it. I remember a few years back; a man saw a photo of Sharsheret on Capitol Hill and misunderstood this as some political issue. He then sent an angry message to the Sharsheret main email to express his disappointment with the organization. Instead of simply ignoring this seemingly crazy comment, Rochie reached out personally to respond. After speaking to the irate emailer, he ended up thanking her for reaching out to him, and has become a strong supporter of Sharsheret. She explained that if someone is so angry that they need to reach out and spew harsh messages, they must be passionate about the cause. We need to embrace that passion and turn it into something positive. 

And Rochie was passionate about expressing gratitude. If you ever received a personal note from Rochie you have likely saved it. She knew just the right words to say thank you to make you feel like you made a difference. And I know today she is tremendously grateful to all those who helped her realize her vision. As she often said, "Sharsheret is thriving not because one woman founded a national organization, but because that organization’s seeds were planted in this community who use acts of Chesed, of kindness, as the yardstick with which to measure extraordinary contributions – women and men – many of you who are here today, were committed to Sharsheret.” And the consequences of your contributions will undoubtedly be enduring. 

I could stand up here for hours to describe Rochie and her boundless energy, her contagious laughter, her unmatched genius, but I would like to end with the very first message Rochie shared with me and probably the most meaningful.

13 years ago I went to my local synagogue, Bnai Yeshurun, to hear her speak about the founding of Sharsheret. As she ended her presentation, she shared an insight into Shabbat candle lighting, that since her diagnosis, had taken on greater meaning. Every Friday night for years she asked God in the Y’Hi Ratzon prayer following her blessing on the candles: “Vezakeini legadel banim u'vnei vanim chachamim u'nivonim, o'havei Hashem, yir'ei Elokim, anshei emes (grant me the ability to raise my children and grandchildren to be wise and understanding people who love God, who are God-fearing and honest).”

And for many years, she focused on the attributes she wanted her children to have. She wanted them to be wise and understanding people who love God, who are God-fearing and honest. After she was diagnosed with breast cancer, her focus now had been on two other words in the Y’Hi Ratzon prayer to which she previously had not given adequate weight: “Vezakeini legadel (grant me the ability to raise my children)."  She had been focused on all that she wanted her children to become, but had glossed over the fact that, above all, she needed to be Zoche (meritorious) to raise her children.

Rochie, as we look at Shlomo and Dovid, and they stand taller than 6 feet today, I think it is fair to say that you were zocha legadel (meritorious to raise your children). Over the last 14 years, you have helped them grow from small boys of 3 and 5 to the wonderful young men they are today, with the values stated in the Y'hi Ratzon prayer, wise and understanding people. You recently told me that you wanted to be a survivor, and to you, survivorship meant grandchildren.  You often referred to Dalia and Efraim’s children as your grandchildren. But rest assured that your love, strength, and values will be instilled by Shlomo and Dovid in your grandchildren. They will spend hours looking at the beautiful Bar Mitzvah and Europe trip albums you so lovingly created these last few months, they will feel your energy as your boys sing and dance the way you did with them in your kitchen. And your legacy will also extend beyond your own grandchildren to all of our grandchildren. All those in the Jewish community who have been touched by you, those who say that Sharsheret saved them in so many ways, will share their experiences with their children and grandchildren for many years to come. That is your legacy.

Rochie, we will all miss you terribly, but we will always have you with us. We love you.

Faith is What Kept Me Going

Excerpted from Mara’s NYTimes blog

Breast Cancer... two simple, yet powerful words! They have always been a part of my life. My mother and grandmother both died from breast cancer, both too early in life. I spent my childhood living through breast cancer. I began having mammograms at the age of 30 because of my family history. In early 2004, my husband and I were blessed with the birth of our beautiful daughter. Shortly after I stopped breast feeding I went for a routine mammogram. There it was - the cancer had arrived! Luckily, it was caught extremely early.

I decided to have a bilateral mastectomy with reconstruction. My margins came back clear; I did not need any additional treatments. Genetic testing came back negative for BRCA1 or BRCA2. I believe I am a carrier of a gene that is yet to be discovered.

My story does not end there, two years later in October 2006, I received word that my 12-week-old fetus was viable. After experiencing two miscarriages, my husband and I were overjoyed. One day, I performed a breast self-exam to what was left of my breast tissue. As I was feeling about just where my new tissue met my old tissue, I felt a small ‘thing.'

I was able to see my local doctor immediately. She performed an ultrasound and biopsy on a Friday morning. By Monday afternoon I was diagnosed with my second bout of breast cancer in three years. The question of what to do and when became even more critical. This was a new occurrence. After many doctors’ visits, my husband and I decided that I would have the tumor removed and start chemotherapy at week 22 of our baby's gestation. Yes, I was nervous and yes, I was scared. But I have always had faith, and faith is what has kept me going through out this whole journey. On March 22, 2007, our son arrived. He was four weeks early, so my treatments moved forward. He had a full head of hair, a good weight and powerful lungs. I am done with chemotherapy, radiation and Herceptin. I have gotten that "clean bill of health." Each day as I look at my children is another accomplishment and a blessing.

The Results That Would Change My Life Forever

When I was 10 years old my mother was diagnosed with breast cancer. She was 37. We are Ashkenazi Jews with no other family history of breast or ovarian cancer. I am now 38 years old and single, hoping for a family one day.

Growing up, my mom was constantly fearful her cancer was genetic.  During my 20s the BRCA mutation was discovered but my family was never tested. Even after countless doctors reviewed our family history. As the test became more broadly known, some casually mentioned BRCA, but no one properly educated us on what it actually meant for my health or the high probability my mother was a carrier. A doctor I was seeing for possible fertility issues felt my problems could be related to a BRCA mutation (an opinion not shared across experts) and explained in greater detail what a mutation might mean for me. This conversation left me scared enough to move forward with testing.

During early fall 2014 I met with a genetic counselor. A few months later I agreed to a blood test and in December received the results that would change my life forever. I was positive for the BRCA1 mutation.

Upon first hearing this news I was devastated - Would I have a family? Would I be able to date again? Would anyone understand my decisions?  My genetic counselor shared the names of a few organizations that educate and provide peer support for women and families at risk for hereditary cancers, including Sharsheret. When I woke up in a panic one quiet day at the end of December, I dialed through the list of names. Most were closed or not willing to speak without an appointment. This was not the case at Sharsheret. Despite not being a helpline, a kind voice listened to my story and consoled me as I told her about concerns and fears I was not yet ready to share with friends or family. Without her I am not sure how I would have survived that day. I still left had many unanswered questions and fears but was comforted to know there were other women like me who have received the same horrible news, have had the same thoughts and questions, but today are happy and most importantly, healthy.

I spent all of January and February 2015 meeting with doctors. I decided to preserve my fertility and undergo a salpingo oophorectomy in early April 2015. The following week I had a prophylactic nipple sparing mastectomy.

While barely a month out from my surgeries, I have never felt better physically or about any decision I have ever made. I look forward to living a long healthy life and hopefully having my own family in the near future. Most importantly, I hope to educate and help other women with a family history of breast and ovarian cancer or a known BRCA mutation.

Not The Story You Would Expect

Excerpted from Deborah’s Presentation at Emerson College AEPhi’s Ribbon on the Runway Event, April 2015

My story is not what you might expect.  My trip through the land of breast cancer was so not traumatic that I still have a hard time actually thinking of myself as a breast cancer survivor.  And I hope it remains that way.  But I did have cancer and it is always there in the background of my life.

Almost exactly two years ago I was called to come back for additional testing after my annual mammogram.   The diagnosis came back as a stage 1 tumor for which treatment included a lumpectomy, radiation and then long-term medication. The prognosis was something like 98% chance of remission/cure.  None of this was fun.  It was emotionally and physically difficult for me and hard on my family.  The medication has side effects which are annoying, and sometimes difficult to deal with.   But the worst of it was over in 6 months.  I was never obviously sick.  Most of the people around me had no idea what was happening (and still don’t know).

The sheer prevalence of breast cancer in the Jewish community led me to support Sharsheret years ago.  When the time came, I knew about Sharsheret and all the many programs it has to help Jewish women with breast and ovarian cancer, and I called, even before I was officially diagnosed.

From that moment on, Sharsheret was a tremendous help to me.  As the caregiver in the family, I didn’t really feel like I could, or really wanted to, share my thoughts with them.  If I wasn’t needy, they wouldn’t worry.  If they weren’t worried, I didn’t have to comfort them.  Sharsheret’s social worker was on the other end of the phone, checking in with me just often enough so I could maintain “even-keeledness” to everyone else. She reassured me when I worried about my daughter’s reaction, sympathized when I described my physical state, supported me when I expressed frustration, listened when I needed to vent.   She sent a pillow after surgery, just at the moment I was thinking to myself I needed something like a nursing pillow to get comfortable.  But this was a fancy pillow in a fancy package, which made me feel so cared for.  Sharsheret set me up with a peer supporter who talked to me about her experiences and sent a package of informational brochures which covered the needs of everyone around me.   There was even one for parents which I gave to my Mom.

When you know someone dealing with breast cancer, and unfortunately chances are very high you will, send them to Sharsheret.  If you encounter oncology doctors or nurses or social workers, tell them about Sharsheret so they can recommend it to their patients.  If your family has a history of breast cancer, get in touch right away.  Sharsheret is there for them and for you.

Celebrating With My Family This Mother’s Day

“In my room watching Netflix,
I did not expect what was coming.
When my mom walked in and said,

“Come here pumpkin, let’s talk.”
The hurt in her eyes was as loud as a tree falling.
She pulled me close and told me the news.
She said, “I have breast cancer.”

Tears overcrowded my eyes as fast as a flood
Thousands of scary thoughts clouded my head.
I was speechless.
In that moment, I felt numb.

My heart raced and my stomach dropped
like I was in a haunted house.
This time I was hurt by the cruelty of life.
She said, “Don’t worry. It will all be okay.”

This is the poem my daughter wrote about the day I told her I had cancer.  She is thirteen.  As a mother, her mother, when I read this poem I was stunned.  One of the things that felt so overwhelming about my diagnosis of cancer was having to tell my family, my children in particular.  How to communicate that while this is scary and will be a bumpy road, it is going to be all right in the end?  That I will fight it with every ounce of my body and every resource available to me?

That is where Sharsheret came in.  I have known about Sharsheret for ten years, as long as my sister-in-law, Shera Dubitsky, has worked there.  While we have talked about her work at Sharsheret over the years, I never thought I would need to reach out to her in a professional capacity.  When I first got the news that the doctors saw something in my MRI, my husband urged me to call Shera.  “Why?” I asked “This is going to be nothing.”  But I did need her and I did need Sharsheret.

Sharsheret provided me with support that I didn’t know I needed and resources that have helped me through the process.  I was given a peer to talk to about surgery options so that I could understand my choices from the perspective of a fellow patient.  The guide given to my husband about how to be a supportive spouse was very helpful for both of us.  Perhaps most importantly, Shera and I had many conversations about how to discuss this with all of my children, for my sons had questions, too. I love that Sharsheret recognizes that cancer affects everyone in the home, not just the person with the disease.

My mother had breast cancer in 1987.  She was single and living alone, and she faced her cancer and treatment very stoically with very little support.  She was tough, to be sure. I am her daughter, and I am tough, too.  It turns out that the experience can be less isolating and easier to bear with Sharsheret by one’s side. 

As Mother’s Day approaches, I am standing here, cancer free, to celebrate with my family.  The end of my daughter’s poem is true: It will all be okay.

From The Simple Son To The Wise Son

My name is Myrna Cohen and I am fifty two years old.  My husband and I have been happily married for twenty eight years and we have a thirteen year old son.  Though I have been celebrating Passover with my family for many years and reading about the four sons, I never really understood the experience of the “simple son” until I was diagnosed with stage 1-A, grade 3 ovarian cancer, at forty eight years of age.  I had a history of benign fibroid tumors, and I thought something wasn’t right because the twinges I had always had on my left ovary hurt more and came more frequently.  Thank goodness I listened to my body and had it checked out. I had a transvaginal ultrasound of my left ovary at my OB/GYN visit and it showed a mass that had not been there 5 months earlier.  If I had waited until my regularly scheduled appointment, I would not have been diagnosed at such an early stage.  I had two surgeries and needed six rounds of chemotherapy because my cancer was very aggressive.

I really felt the need to find others who have been on this teal journey I was about to embark on.  There were not many resources available relating to ovarian cancer and the ones that I did find were very difficult to read due to the advanced stage when most ovarian cancers are detected.  Already having the medical support I needed, something else seemed to be missing.  As I searched for spirituality, I realized that I was seeking a Jewish connection.  I felt like the “simple son” in the Passover Story - I had so many questions yet I didn’t know what to ask. 
I contacted a local ovarian cancer awareness organization and they gave me Sharsheret’s information.  A few days later, a friend also told me about Sharsheret.

I realized that if I felt like the “simple son”, I was sure other women did too.  Through Sharsheret I was able to find that there were other women out there like me and it  made me feel better knowing that I wasn’t alone.  Sharsheret has had a huge and positive impact on my life.  I am happy to report that since my diagnosis in June 2011, I was able to find the resources and answers I was looking for.  I now feel like the “wise son” and am empowered to share my wisdom with other women on this journey.   Because I am so fortunate that my cancer was found so early, I feel G-D wants me to help spread awareness of the signs and symptoms of ovarian cancer in hopes of having ovarian cancer diagnosed at earlier stages.  It is my hope that along with Sharsheret we can spread more teal education and awareness.

From Lost Caller to Peer Supporter

Looking back almost ten years, I think the first overpowering emotion I associate with my Stage 2 breast cancer diagnosis at age 25 is loneliness. It came before fear, denial, sadness, anger, and pain. No one could possibly understand what I was experiencing. Enter Sharsheret. The staff, peers, resources, gifts in the mail, and the intense realization that I was in no way close to alone in my journey.

I will never forget my first peer phone call. Within 60 seconds, I experienced something that had not happened since diagnosis – I laughed. A lot. I started to feel like maybe everything was going to be ok and maybe there were people who could understand this insanity.

I spent 16 months doing chemo and then the real healing began. This stage was even harder than the illness itself. I had to figure out my “new normal” and rejoin my previous life. With Sharsheret staff and a new peer supporter, I started to figure it all out and focus on my future.

I re-entered the dating world. Who was I now? How was I going to address the “cancer thing?” It was a rough road of disappointment and confusion, and a different kind of pain. There were tear-filled conversations and practical advice from Sharsheret. In time, I was dating someone very special. He knew the broad strokes of my “story,” but not the real details. With help from Sharsheret, I figured out a very specific plan of action. Eventually, as a couple, we worked through difficult conversations and moments. Doesn’t everyone spend their fourth date sitting with an oncologist discussing cancer and the future?

I had found an incredible partner. But, the more my life was moving forward, the more it became clear that my cancer survivorship had a huge impact on each step. As I was getting married, Sharsheret came through again. The consistent support and meaningful help truly came from my Sharsheret Ladies, as I started calling them. I am blessed with a one-of-a-kind family whose love knows no boundaries – but for what they could not understand, they would ask, “Have you called Sharsheret?”

Most recently, I called Sharsheret for the next thing that has come up. We are expecting our first child and I needed a totally new kind of support. It was a really fun call to make and I know that there was joyful screaming in the office as these women had become like family.

Having had breast cancer at 25 changed my entire world. I thought I could do it alone. I was so wrong. I needed help and I got it from my Sharsheret Ladies. I am now a peer supporter to others and a speaker to college students and other young leaders. This transition from lost caller to peer supporter and presenter was a huge deal. I was recently on the phone with someone in the office and panicked when I asked if I could still call in as a survivor. I was told of course Sharsheret would be there for me and my family for many healthy and happy years to come.