Our Voices: A Blog by Links, Callers and Volunteers

Breaking The Silence

My mother had both breast and ovarian cancer.

Despite all odds and a less than 3% chance of surviving, my mother, Joyce Turner, survived them both. Yet I still didn’t want to face my potential vulnerability.

My mother, Joyce, was the 21st person to join a National Institute of Health study of the BRCA genetic mutation.  She joined the study in 1996, nearly twenty years after her double mastectomies, six years after surviving an 8 pound ovarian tumor. My mother joined the study on behalf of our family, and chose to speak out and communicate with other family members about her history.  Following my mother’s lead, my family agreed to be tested en masse.  We now have over 100 family members in the NIH databank.

Upon confirmation that we were a “cancer family” our family created a Google discussion group.  We openly discussed out test outcomes.  Many of us decided, together, to have hysterectomies or oophorectomies.    We joked about trying to get a group discount with the doctors.

Now, some of us have decided to face preventive mastectomies.  Others with the BRCA gene decided they do not want to take that step.  Still we joke that if we had the surgeries together it would be great, because then the entire family would have to visit in the hospital and bring us great meals and treats!   We’ve given each other gift cards after each surgery and specific information about what to expect in the aftermath of each surgery. My cousins ask each other questions nobody else would ask, because we are often going through these things together.   For example, how many cc’s are you putting in your breast tissue expanders?  More than that, we sometimes fret and support each other over our children’s decision to be tested or not.

So, I urge you to try to break the silence and openly discuss this with your immediate and extended family.  Discuss it with your children, parents, cousins, distant cousins, spouse.  There is no shondah in this.  This is part of our common heritage.  Open communication allows your family members to take steps to protect their own lives and those of their children!  It’s a family affair…

Sukkot And The Fragility Of Our Lives

I was a little worried on Rosh Hashanah. By Yom Kippur, I was anxious enough to wonder out loud what I might look like without hair.  The official call came right before Sukkot.  I was in the kitchen preparing for the holiday and my husband was putting the finishing touches on our sukkah.  It was 10:00 pm and the man who was an old family friend, and who I would soon call my oncologist, called to share the news that I did indeed have cancer and had a year’s worth of chemotherapy and radiation ahead of me.  It wasn’t a surprise, but now it was a reality and I finally allowed myself to break down. I had carried the fear with me through the New Year and was now shaking with anger that the cancer that had already invaded my body was now invading my favorite time of year, my favorite holiday.

I love Sukkot. I always have. I love the changing leaves, the cool breezes, the connection to nature and even the sense of fragility we face in the sukkah.  This year, the fragility was not theoretical. Instead of mornings in the synagogue with my community and afternoons filled with delicious meals with friends and family, I would spend my Sukkot filled with staging tests, scheduling treatments and comforting my young family.

I wondered to myself if sometimes you need a clear sign to truly understand a holiday. I wondered if a cancer diagnosis on my favorite holiday would ruin the celebration forever?

The fragility of life was unmistakable to me that year. Sitting in the sukkah took on a vivid new meaning. But so did my sense of community.  It was clear that I would not go through this experience alone. My family, my friends and the greater community stayed by my side. They provided child care, meals, rides, friendship and perhaps best of all, humor. They built a more solid shelter for me than I could have ever hoped for. The year of my cancer diagnosis I truly understood the fragility of life – and I truly understood the meaning of community. Despite Sukkot not going as planned, I learned its lessons well.

Now, each Sukkot that passes seems to be a celebration of life, not a commemoration of diagnosis. I do understand the fragility of our lives, and instead of bemoaning that fragility, I celebrate the strength I had, and the strength I have developed as a result of my cancer experience. I see Sukkot as a personal triumph and welcome it with open arms every year.

My Sixth Half-Marathon With Team Sharsheret

I was lucky enough to meet Rochelle, Sharsheret’s Founder and Executive Director, through the Berrie Fellows Leadership Program eleven years ago. I was so inspired by her intelligence, her sensitivity, her knowledge and her tenacity. A few years later, while having lunch together, I mentioned that I was training for the MORE Half-Marathon in NYC, a race in which only women competed. I knew that Rochelle was a runner as well and I invited her to run with me…then I thought that I would run for Sharsheret. I joined Sharsheret’s very first Team with two other women and we completed the race on a cold wet Sunday. From my very first step, I knew that my commitment and involvement would only grow. Today, I am honored to be running my sixth half-marathon again with Team Sharsheret!!

Joining Team Sharsheret is a perfect way for me to remember and honor Rochelle and so many women in my life. I am running in memory of Emily, my best friend’s sister, a woman in her 20s who was diagnosed with Stage 4 breast cancer. I am running in honor of Debbie, who was immediately diagnosed with breast cancer just after her sister Emily had passed away, and in honor of Sharsheret and the amazing work that they do every day to support women and their families facing breast cancer and ovarian cancer.

Please support me in my efforts as I train through the warm summer and fundraise and spread the word about Sharsheret.


New Reflections on an Old Prayer

“On Rosh Hashanah it is inscribed

And on Yom Kippur it is sealed

How many shall die and how many shall be born

Who shall live and who shall die…”

A woman living with advanced cancer recently shared with me that as she read the prayer, “Who shall live and who shall die,” on Rosh Hashana, she shifted her focus from the literal interpretation of the prayer on life and death, to now seeing the prayer more metaphorically as a template for how to live life. Seeing this highly charged and emotional prayer from a different angle offers a guideline on how to experience life and living, particularly when facing difficulties and challenges in your life.

I relayed her message to other women living with advanced cancer in Sharsheret’s Embrace program, who deepened the discussion by adding their own interpretations to this historical and timeless prayer.

Am I living my life to the fullest or am I focused on dying?
How am I measuring my days? Am I squandering time?
Do I live my life reacting to everything as if my home is on fire or damaged from a great flood? Not everything is a 10 on the stress scale.
What should I be hungering for? Am I yearning for the right things? What are my true needs?
Am I strangling myself by constant thoughts of fear and anxiety, negativity, jealousy, or anger?
Am I taking time to rest or am I always wandering, running? Do moments of rest scare me?
How can I live my life in tranquility and not give into the bullying of cancer?
How do I place a value on my life? In what ways am I wealthy (not monetarily)? Do I appreciate my riches? Am I grateful for what I have?
How do I continue to raise myself?

As we approach Yom Kippur, our task is to reflect back on this past year in order to help us move forward. With new eyes on this prayer, we can find hope and inspiration for this upcoming year. I wish all of us meaningful and uplifting reflections.

We Are Not Alone

I had been married for seven months when I was diagnosed with ovarian cancer.  Just one month before my diagnosis, I was on my honeymoon.  Then one day, I had a pain in my side that needed investigating.  The diagnosis came quickly.  I needed surgery, which would involve losing a lot of my reproductive system, and I needed chemotherapy.

The beginning of our marriage was supposed to be filled with hope, promise, and dreams for the future. But cancer stole that magical sense of newness.  I had to get through the surgery, the chemo, and I had to find a way to have children.  I remember, as I was ushered into surgery, begging the doctor...please, I'm 23.  Please try not to take everything.  We want a family.  Please.  

I was lucky to be surrounded by a strong support system.  My newly minted husband was so good to me.  He cried with me, stayed up with me when I woke up afraid in the middle of the night.  He didn't flinch when I found hair on my pillow and helped me cut it off so it would be less traumatic.  He loved me through it.  And my mom was truly heroic.  A cancer survivor herself, she'd arrive at the hospital by 7 am, sit by my side while I slept, and make a discreet exit when my husband arrived, ensuring that we had some time together as newlyweds.

I had so much love surrounding me, and yet, I felt so lonely.  Being sick was isolating.  Being so young, I felt completely alone.  Who could relate to what this pain feels like?  Who could quell my fears about the mysterious side effects of chemotherapy?  Who could understand how desperate I was to have children?

After many years of heartache, and more jealousy than I'm proud to admit, we were miraculously able to start a family.  We now have four children, a life that we never could have imagined at the time of diagnosis.  When I was in the hospital delivering my twins, I actually had the same orderly that I had when I was in treatment.  When I recognized her, she couldn't get over how special it was for me to move from the oncology floor to the maternity ward.

For years, I've hesitated to share my story.  Recently, I approached Sharsheret because I felt ready to tell my story.  Sharsheret encouraged me to speak.  They convinced me that we have to share the good stories, the things that work out.  By sharing, we remind ourselves that we are not alone with our struggles.  By sharing, we find hope.

I wish Sharsheret were around when I was sick.  Connecting with others is sacred.  For that reason, I am proud to be a part of Sharsheret today.  To offer whatever support I can to other women facing a similar journey.  I'm still working on not feeling guilty.  But I'm going to keep sharing, in the hope that we can find strength in our journeys.  That we can find the strength to go on.  That we can find the strength to hope. 

The New Normal

I come from a tight-knit family. My mom, dad, aunt, uncle, brother, and cousin, Dana, are six of my biggest supporters and best friends and my aunt, uncle, and cousin live the town over from me in suburban Boston. Weekly dinners and holidays together are common when I come home from college, and the seven of us celebrate almost every occasion together. So when my aunt, Carol Kappel, was diagnosed with breast cancer in 2010, chemotherapy and Herceptin became common words in my household and seeing my aunt in a head scarf became the new normal.

Five years later and my aunt is completely healthy, running, and staying active almost every day and still very much a part of my life. She has become one of the most vocal and passionate advocates of breast cancer research that I know and lives her day-to-day with a love for life that only tragedy and survival can provide. While she continues to count her blessings, I do as well, for I know that many nieces, nephews, grandchildren, sons, daughters, husbands, and wives across the world are not as lucky as I.

I decided to run the Spartan Race at Cornell to raise money for Sharsheret with a group of my Alpha Epsilon Phi sisters. Sharsheret is one of our national philanthropies, helping women like my aunt find support while they battle breast cancer. My aunt has been my biggest cheerleader as I train for the race on September 5th and I am so proud and honored to run it for her.

United Under One Goal

I started my internship at Sharsheret one month ago, without knowing what type of experience I was walking into or the extent of Sharsheret’s reach.  As I was given a tour and introduced to the Sharsheret staff, I noticed right away the unique atmosphere of Sharsheret - everyone was personable, enthusiastic, and motivated (and not to mention, fun!).

As Sharsheret is a fast paced office, constantly moving to find new ways to expand its influence and help Jewish women in need of support, I was instantly given my projects for the summer.  I was fortunate enough to contribute to and work within the various teams of Sharsheret, such as the support and outreach teams.  One of my favorite projects this summer included working on two posters that will be presented at the Academy of Oncology Nurse and Patient Navigators annual conference and the Critical Mass annual conference.  Through creating these posters I learned about Sharsheret’s Thriving Again Survivorship Program and other support and educational resources that Sharsheret has created and made available to young breast cancer survivors.  I was also fortunate to sit in on and participate in Sharsheret’s support team meetings.  In culmination of my time at Sharsheret I was able to present and update the support team on multiple new medical studies regarding breast and ovarian cancer.

Through working within the various branches of Sharsheret I saw firsthand how all the different aspects of what Sharsheret does as an organization are united under one goal: to help each individual woman that reaches out to Sharsheret.  Every woman is given the support and resources tailored to her unique story.  As for me, Sharsheret has played a part in building my story by allowing me to learn from the powerful people that work here and allowing me to contribute to such an influential organization.

My First Triathlon

I went to high school with Rochelle Shoretz and she epitomized what it meant to be larger than life.  Three years ago, I met Rochie for breakfast and she planted the seed. She told me, “You should do a triathlon. It will be fun.”  At the same time, a friend said I should do one, saying I "had the personality for it."

At the end of last summer, as I reached a crossroads in my life, I decided it was the right time for a welcome distraction- to train for a triathlon. 

But I didn’t think I could do it.  I knew that although I could bike, I could run only half a block.  I couldn't swim a straight line and got out after one lap thinking I was having an asthma attack.  So what helped me? Purchasing the right gear, hooking up with the best coaches and consistently practicing.  The second lap and the first half mile is the hardest for me. But once I get past that mark, I just go.

As part of Team Sharsheret, I will be completing my first triathlon at West Point on August 16th. I aim to complete the race in Rochie’s memory, in honor of my grandmother, a breast cancer survivor and for my father, a physician like no other who has touched the lives of countless women affected by breast cancer.  And finally, I'm doing this for myself.  Because I don't have to be first.  I just have to finish. 

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Finding My Story

Two months ago, I walked into the Sharsheret office on the first day of my summer internship. I had no idea what to expect. What would the people be like? Would I be dressed right? What would I be doing? At that point, there was no way I could have known what kind of summer I was in for.

Day 1 started and we were off! After an incredibly thorough orientation, I was given a pile of Sharsheret’s resource materials and told to take the afternoon and really get to know Sharsheret. My supervisor told me that if I was going to work for Sharsheret all summer, I should know more about what it does so I would develop a connection to the organization. I took her advice, and she could not have been more right. By the end of that first day, I definitely had a good picture forming of what Sharsheret is. Throughout the summer, this picture got clearer by the day as I saw the care that Sharsheret shows to the women and families it serves and felt the warmth it shows to its employees. This office is a family and a community, and I feel fortunate to have been welcomed into it.

One of the projects I worked on this summer was helping develop presentations for use on college campuses. An important aspect of this project was the “Sharsheret story”. Over the course of the summer, I heard many different Sharsheret stories, and as I wound down this project, I began thinking a lot about my own story. Even though I’ve done a lot with Sharsheret this summer and could easily tell a story about any number of things, I couldn’t quite put my finger on what my story was. It wasn’t until I sat down to write this blog post that I finally found my story. My story is one of movement, from confusion to confidence. I started this summer with a lot of questions, both about this internship and about my future as a social worker. I leave Sharsheret certain; certain that I did meaningful work this summer, and certain that I want to dedicate my career to Jewish communal service. Thanks to this internship, I know now that I am on the right path. This has been a wonderful environment in which to have new experiences and learn new skills and I’m excited to take all that I’ve gained here into my future career. Thank you to everyone at Sharsheret for a great summer.

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.

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