Our Voices: A Blog by Links, Callers and Volunteers

Hope, Strength, and Positive Thinking

There has been a lot going on at once for my family, with my mother's diagnosis coming so soon after my diagnosis and first surgery, and our treatments overlapping time wise. Throughout this time, Sharsheret has been such an incredibly important part of my journey; always providing so much grounding, loving, supportive kindness. I cannot imagine what this past year from diagnosis through today would have been like without Sharsheret. It is incredibly comforting to know that I have a contact at Sharsheret who "knows me" and my story.

My first surgery took place on February 2nd, and my second surgery happened not so long ago, on July 11th. My daughter began camp the Monday before and I was happy that we had two weeks to get her acquainted with her day camp routine before I had my next reconstruction procedure. Before my procedure, I was mentally preparing for this next step. Trying to stay very optimistic about this procedure being much less intense, with an easier and faster healing process.

My mother, who was diagnosed with breast cancer just a few months after me, also began the next phase of her treatment about two weeks after my surgery. She was scheduled to begin her radiation therapy at the end of July, once my drains were out, and I could be back in the swing of things for the most part, without the extra help of my parents. Something I love about the photo in this blog is it shows the close connection between two women, both who received diagnoses where we were given the same choices for our surgical treatment. I chose one path for my reasons at 40 years old and my mother chose the other surgery and treatment for her reasons as a 66 year old woman. Never once did either of us second guess or question the others’ choice, we went different directions, and respected each other with the same non-judgmental support and compassion one experiences when they contact Sharsheret and speak with the social workers and peer supporters.

We both feel fortunate as the recovery process could certainly be much more difficult and complicated for both me and my mother. When I am feeling overwhelmed, I find it is helpful to take that step back and think about the breast cancer community as a whole. This step back provides so much perspective when I realize we are not alone. I always feel inspired and in awe reflecting on the stories of so many women who are also bravely fighting their cancer. So many of whom have to endure significantly greater treatment therapies and sacrifices requiring enormous strength and courage. This helps remind me that my mother and I will get through this challenging time as well. 

Being connected to Sharsheret means a great deal to me. Having a direct connection to a larger group of women who are battling breast cancer provides me with so much hope, strength and positive thinking.

Sugar Coating the Holidays

From the time we are little, we look forward to dipping the apple in the honey on Rosh Hashanah. Why an apple? There are several sources that suggest that over the course of Jewish history the apple represented the tenacity of Jewish spirit and determination. And the honey? Honey is the symbolism of our desire for a sweet New Year. Sweet meaning precious, enjoyable, peaceful, and protected. The combination of the apple and the honey makes for quite a meaningful tradition… most of the time.

For those of you who are facing challenges and adversity, connecting with tenacity and determination, particularly around the holidays, may be difficult. No manner of sugar coating, or in this case, honey coating your experience feels attainable. Having to shop and prepare meals for the holiday may be overwhelming, and the thought of having to delegate is another reminder of the impact of cancer. Sitting in synagogue reading the prayer “Who shall live and who shall die?” is a trigger for many of you who are living with and surviving a cancer diagnosis. Putting on a happy face when surrounded by friends and family when you are feeling fatigue, stress, and fear takes a lot of energy.

Perhaps this is the time to reframe this tradition, to not only see this practice for what you want for the New Year, but rather as a reminder of everything you hold precious, enjoyable, serene, and secure that cancer and treatment can never touch. As one Sharsheret caller shared, “Even though I can’t keep cancer from invading my body, one thing I have come to realize is this: Cancer can’t touch my soul.”  Your strength and resolve are tested beyond any limits you thought you had, and then beyond that. Allow both tears and laughter to flow equally and freely, as they both have the potential to cleanse and renew your spirit and determination.

Wishing you all a sweet and healthy New Year.

From Fear to Freedom: Sharing my journey as a BRCA carrier

From the moment I found out I was a BRCA gene carrier I felt an overwhelming need for information and to connect with others in similar situations. I was in my twenties, about to get married, and I needed to know more. Thankfully, I was told about Sharsheret. They gave me the help that I needed, combined with medical and family support, to make the decision to undergo biannual testing to stay 'one step ahead'. As time went on, having undergone numerous biopsies and wanting to focus on growing my family, I had begun living a life consumed by fear. I decided to do what I hadn't imagined I would ever consider, I underwent a prophylactic double mastectomy. I chose a dream team of doctors (after being shocked by the insensitivity of various medical professionals) and with the support of Sharsheret, I began this next journey. I maintained my privacy throughout that period of time, not putting my story out there for all to hear and weigh in on. However, I have now come to feel a sense of pride, relief and confidence in my decision and the journey I went on as an individual, a young wife, and mother. The more I shared the more people opened up and I realized the importance of paying it forward. Everyone's journey is different, but feeling like you are standing tall on love, support and generosity of spirit, I believe, is the best way to move forward, stay focused, and heal.

To view Liora’s film “From Fear to Freedom” visit http://www.docyourstory.com/portfolio_page/liora/
To view the trailer of Liora’s film “From Fear to Freedom” visit https://vimeo.com/154630179

Liora’s video, “From Fear to Freedom” was produced by docyourstory.

How I Got it Before it Got Me

My mother was a carrier of the BRCA gene mutation and was diagnosed with breast cancer at the age of 32.  After my mom had died at the age of 51, I knew that there was a possibility that I was carrying the deleterious BRCA gene mutation too.  When the doctor called to give me results, I was not surprised but disappointed that I had not somehow avoided this fate.

I encountered the Sharsheret website while searching for information about my BRCA positive diagnosis. I knew that I wanted to find out everything possible about the gene mutation, its risks, probability factors, and prevention treatments. I am grateful to the people at Sharsheret for giving those facing breast cancer a central place to get information, support and reassurance.

After researching I felt like I was a breast cancer patient waiting to happen.  I wanted to take control of an aspect of the illness that was controllable and do anything possible to significantly lower my risk.

I am forever grateful to a colleague of mine for sharing her preventive prophylactic surgery experience with me that she underwent a year before. With her support, I was able to face my personal journey with complete confidence and minimal trepidation. I was lucky that my previvor friend recommended an awesome team that was able to do a nipple sparing prophylactic double mastectomy with reconstruction in one surgery.  I was back on my feet and back to work 2 weeks later.

I believe that every person who has chosen to have a mastectomy before her diagnosis is another person that modern science with its awesomeness was able to help.  The goal is that it saves us the chemotherapy, anxiety, fears... I know those side effects all too well.  I watched my mom suffer from them from when I was 12 years old.

My mom was my best friend on earth.   She taught me to be proactive, to take the reins in every situation and to stand up for something when you believe in it.  I believe that she would be so proud and so grateful that I did this surgery.  I want to encourage others to seize the moment and not allow fear to stand in the way of making healthy decisions that fit their unique set of circumstances.

Always Have Hope and Never Give Up! My Journey to Getting Healthy

In February 2012, I was scheduled for my yearly gynecological visit. I was a little concerned because during intimacy, I felt pain. I was eager to speak with my doctor. I trusted him after treating me for 30 years, delivering my babies and always being very thorough. I felt a bit embarrassed to bring it up, but I found the courage to ask. My doctor was dismissive and said everything was ok. Because I trusted him, I never thought to question him further.

I continued having pain during sexual relations. The whole time, I was remembering the doctor saying nothing was wrong. Months went by and my pain got worse. I started to have stomachaches after eating. I was having some constipation issues, but thought nothing could be wrong because I had no other symptoms like a bloating stomach, or feeling tired or sick.

A year went by and it was time for my yearly gynecological visit. I was eager to let the doctor know that my pain was still there. He told me, again, that everything was ok.  I was concerned and mentioned that the pain was worse. He agreed to do a sonogram and the screening for ovarian cancer, which was a blood test.  I got the call from the doctor's office saying, “Limor, we are very concerned, your CA125 came back high.”  Now it felt very scary and real. The emotions just took over. I was anxious for my surgery.

March 5th could not come soon enough. I ended up having a full hysterectomy, and the pathology report said that the cancer was everywhere. Staying in the hospital recovering was tough, but all I kept thinking about was getting better and beating cancer!! I was determined to not let this change my life… I was just slowing it down for a bit. I have 3 wonderful teenagers and I could not let them down. I had to be strong and show them that being a good role model is how we were all going to get through this.

I was scheduled for a total of 18 treatments of chemotherapy. The countdown started.  Every week after each treatment, I was one day closer to getting healthy. My kids had been my rock, telling me every day that I looked beautiful without my hair and that I was going to make a positive difference in the world from this negative situation.
This week I celebrated 3 years cancer free. I am so thankful each day. Being a peer supporter for Sharsheret has been amazing. Helping a woman going through the same thing I went through, gives me much joy. No one knows what you are going through unless you have been there yourself. I want to help people feel better, one day at a time. I plan to raise awareness that if you think something feels wrong, don’t put it off. Challenge your doctor even when he dismisses it and says it’s nothing. We know our bodies better than anyone else.

In life, I cannot choose the all my battles. Faced with challenges, staying strong, having hope and faith, and surrounding myself with caring people, is what got me through, and now helps me deal with unplanned events in life.

Always Have Hope and Never Give Up! 

Breast Cancer and My Spiritual Journey

I went to Shabbat services this morning for the first time in months. My long absence wasn’t an intentional decision. In fact, I only became aware of the ‘decision’ recently.

A cancer diagnosis affects so much more than you think it will. Of course I expected the physical challenges. And it came as no surprise when I found myself emotionally drained. What I didn’t recognize for either of my two diagnoses was the impact cancer had on my spiritual life. 

Living Jewishly has been important to me since childhood. Through the years it has meant very different things, yet has always been an integral part of who I am.  I grew up in a Reform Temple. My husband, now a committed Jew, grew up in a Christian home. We have spent time in both Conservative and Orthodox communities. Those varied experiences have made us very sensitive to both the way we practice and our relationships with G-d and community.

During my first diagnosis, I instinctively turned to faith and spirituality. I went to synagogue, spoke with G-d, wore an amulet with Jewish text and even received a healing ‘bracha,’ or blessing, from a rabbi. My community and my faith were a large part of my recovery. I drew strength from what had always been important to me.

Seventeen years later, at the time of my second diagnosis, without even realizing it, I shut down spiritually. In retrospect, it was as if a switch was flipped. I withdrew from my community. I stopped attending Shabbat services and drew little joy from holidays and Shabbat.

Navigating cancer places unique pressures on not just the patient, but the family. A medical crisis can not only bring family together; it can also highlight differences. In my family, with our joyful and carefully constructed religious life, changes of any type were a challenge that needed to be addressed. Were the changes I made permanent? How would they impact my family? Were they actually helping me deal with my diagnoses?

I realize now, both from the benefit of time, and from the conversations I have had with other cancer survivors, that diagnosis can make a person spiritually fragile. When you are diagnosed you may look to find meaning in the experience. That may mean drawing closer to faith, changing the way your faith is expressed, or turning away completely.  It may be an intentional decision, or something you realize in retrospect. Maybe I was mad. Maybe I needed every ounce of strength I had to deal with my treatment. What I know now, healthy and long past treatment, is that my life is missing something.

Jewish observance and commitment has always been an active conversation in my home so I am not sure why it took me months to realize the changes that occurred at my second diagnosis. Now that I am aware of what I have lost, I have made myself a promise to fight my way back to something that has always brought me joy and comfort. I am not sure where I will find myself in the end, but I know one thing for sure: I’ll be in synagogue next Shabbat!

Sharsheret, Hebrew for "chain", is a national not-for-profit organization, that supports young women and families, of all Jewish backgrounds, facing breast cancer, at every stage – before, during and after diagnosis.

Some Things Never Change

I was first introduced to Sharsheret last year, when I was the Nonprofit Management Intern at the University of Florida Hillel.  We were collaborating with UF’s AEPhi chapter in order to bring a Sharsheret Pink Shabbat to campus, and I was tasked with the majority of the planning process.  In order to prepare, I began researching Sharsheret’s programs on their website.  As I scrolled through the many pink-colored tabs, I was in awe.  As a self-proclaimed Nonprofit Nerd (and proud of it!), I was amazed by all of the wonderful programs that Sharsheret had to offer and I knew that I had to get more involved!

Fast-forward to my first day as the Sharsheret Florida Summer Intern: I was given a comprehensive overview of all that Sharsheret offers and was briefed on what was expected of me throughout the course of my internship.  I left that whirlwind of a day with a deeper understanding of just how much Sharsheret does for the incredibly strong women and families it serves, and an intensified passion which has fueled my work over the past eight weeks.

Throughout the summer, I have had the opportunity to help with event planning, donor research, and a number of outreach projects.  For one of those projects, I was asked to catalog all of the blog posts that appear on the Sharsheret website.  In order to complete this task, I had to read 150 posts and take notes on the content...sounds fun right?  Little did I know that this project would become one of the most meaningful and enjoyable projects that I have completed. Because of this project, I have realized that in a world of uncertainty, Sharsheret truly is a shoulder to cry on, a trusted advisor, and a pillar of strength to many.

A lot has changed since the beginning of my journey with Sharsheret. I have grown exponentially as both a person and a nonprofit professional. One thing, however, has remained the same since the very first time I was introduced to this incredible organization: I am still in awe. I’m in awe of the passionate and dedicated individuals that I was fortunate enough to work with.  I’m in awe of the care and consideration that Sharsheret gives to each and every person that reaches out to us.  I’m in awe of the sheer number of programs and resources Sharsheret offers to those who need them.  Most importantly, I am in awe of the strength of each link that makes up this beautiful chain that I am so lucky to be a part of.

My Summer at Sharsheret

This summer, I was privileged to work as an intern at Sharsheret, with the specific goal of helping to expand the ovarian cancer program.   Due to the nature of its diagnosis, most ovarian cancers are only detected at advanced stages as they are often initially attributed to common illnesses.  Sharsheret helps to provide resources, such as a Thriving Again survivorship kit, to young Jewish women diagnosed with ovarian cancer and ovarian cancer survivors. The Thriving Again Survivorship kit helps these women create a personalized care plan and learn more about survivorship.

During my internship I worked on reviewing and updating Sharsheret’s ovarian cancer survivorship resources that are included in the Thriving Again Survivorship kit.   I was also involved in multiple outreach projects to help spread awareness about the work Sharsheret does for ovarian cancer patients and survivors.  I was in contact with medical centers, Jewish healing centers, and Bikur Cholim programs across the country to inform them about how we help the women in need, adding how they could help as well, through partnerships or cultural competency trainings.  My hope is that through these projects, more women will know that Sharsheret is a place they can turn to for resources and support.

This internship was both informative and meaningful for me; living in Teaneck, I had always heard the name “Sharsheret” and recognized the organization as an important one for women with breast and ovarian cancer.  However, I was not fully aware of the amount that the organization does for these women, and I am so grateful to have seen firsthand how passionate the staff is. There is a constant flow of support coming from Sharsheret, and the dedication to helping women with breast and ovarian cancer is remarkable.  I look forward to keeping connected to Sharsheret and I am excited to watch the organization continue to grow.

My “Link” to Sharsheret

I first encountered Sharsheret at a conference in Washington DC last fall.  I immediately became intrigued by Sharsheret’s variety of programming, individualized support, and dedication to helping young women and their families facing breast and ovarian cancer.  I also had a specific interest in breast cancer advocacy, as my mom was diagnosed in 2014. Sharsheret served as my “link”, uniting my two passions, Jewish communal work and breast cancer advocacy.  I knew I had to get involved.   After applying and being accepted as the Sema Heller – Netivot Shalom Summer Intern, I knew it was bashert (meant to be).

My first day at Sharsheret was filled with warm welcomes, many meetings, and receiving my individual assignments for the summer.  I remember thinking, “How could I ever finish all of this work?” After meeting the energetic Sharsheret staff, I was ready to delve into my projects.  I was fortunate enough to have worked in each of the departments - Development, Education and Outreach, and Clinical. This gave me the opportunity to experience all that Sharsheret offers, and to learn how the individual teams work together to better serve our larger community.

One of my favorite projects this summer was working on our Sharsheret Pink Shabbat® program.  This program helps educate communities about the increased risk of hereditary breast cancer among the Jewish population, through a wide array of programming.  I gathered contact information for hundreds of synagogues throughout the country and connected with them about this meaningful opportunity. This project showed me the importance of Sharsheret’s national platform and how much of an impact we are making throughout the country.

As my summer internship comes to an end, I look back on an incredible eight weeks filled with meaningful work, dedicated staff, and committed volunteers. Sharsheret has provided me skills that I will take with me as I enter my second year of social work school.  I am excited to see what the future holds for Sharsheret, and I can’t wait to watch their programs and support continue to grow.

Talking About Cancer Screening with Women with Intellectual and Developmental Disabilities

Mammograms and Pap tests are effective breast and cervical cancer screening tools for all women. While cancer incidence rates are similar for women with and without disabilities, women with intellectual and developmental disabilities (IDD) are not screened at the same rates as their non-disabled peers.   Reasons for the disparate screening rates for women with disabilities include lack of knowledge or understanding about exams, anxiety or fear, and absence of recommendation by physician.

Many caregivers of women with disabilities, including parents and siblings, struggle with the best ways to talk about the procedures.   The Lurie Institute for Disability Policy at Brandeis University developed an initiative, Women Be Healthy, aimed to teach adult women with IDD and their caregivers about cervical and breast cancer screening.   Resources, including video clips designed for caregivers and women with disabilities to watch together, short guides, and a full curriculum can be found on their website.

Caregivers are encouraged to regularly discuss with women with IDD their receipt of preventive women’s health screenings.  It is also helpful to seek out ways to reduce anxiety surrounding the screenings such as practicing deep breathing, listening to music, or accompanying her to the appointment. It is important to emphasize that these screenings are part of being a healthy woman, just like a regular physical examination or a dentist’s appointment.  Caregivers might list important women in the individual’s life, and mention that they all include these procedures as part of their health routine. One way to frame these procedures is that even though they might seem strange or different, they help the doctor to know what is going on inside her body. 

Another useful tip for caregivers in talking about and preparing for screenings, is to be honest about what the experience is like.  It can be beneficial to look at online images of the mammogram machine, stirrups and speculum prior to the appointment, or to even schedule a time to go to the doctor’s office ahead of time to see them up close.   This takes an element of the unfamiliar out of these new procedures.   While the prospect of these screenings may seem intimidating for both patients and caregivers, with some preparation, these life-saving procedures are accessible for patients of all ability levels.

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