Our Voices: A Blog by Links, Callers and Volunteers

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.

Dream It. Achieve It.

When our niece was diagnosed with breast cancer in her mid-20’s, there were limited to no resources for young women, let alone young Jewish women, with breast cancer. Our niece, a mother of two young children, went through treatment and the cancer would go into remission for several years. Unfortunately, it would not stay away forever. After battling valiantly for another six years, she would finally succumb to what undoubtedly was a scary disease for a young mother.

This type of story has likely played out in this fashion time and again. But in the case above, we can rewind the story. After her first bout of cancer, our niece decided to never allow another young mother to have to face breast cancer alone. Her dream was to educate families, and to show how one could make cancer a bit less scary for young children, and how families may cope with such an illness. Never one to let a dream just fade, our niece took action. Our niece, Rochie, founded Sharsheret.

Rochie’s real dream was that Sharsheret wouldn’t just be synonymous with her name. She wanted it to be one where every person who ever got involved became a member of the link in that chain. That chain spans continents and years. By supporting Sharsheret’s many causes, we all get to be a part of that chain, and we ensure that a young mother’s dream will never fade.

Rochelle's Birthday - A Date to Celebrate

"There isn't a day that goes by that we don't think of our dear Founder, Rochelle Shoretz, who passed away a year ago."

- Elana Silber, Executive Director
 
We fondly remember her brilliance, her laughter, her aspiration for excellence, and her vision that no woman will face breast or ovarian cancer alone. This morning, when I checked my calendar, the date July 27th jumped out at me and made me smile - today is Rochelle's birthday. Each year, she would meticulously plan every detail making her birthday celebration perfect. What many of you may not know is that behind this annual day of unparalleled fun, excitement, and adventure, what Rochelle loved most about her birthday was the actual date - 7/27/72. One of the first days we worked together, we had to complete several forms. She smiled broadly and said to me, "This is my birthday and I promise you will never forget it. See how the numbers are perfectly matched and come together in a chain of 7's and 2's?" And, she was right. I never did forget her birthday. Today, I wonder if her birthday also symbolizes the foundation of Sharsheret - finding the perfect match, whether it's with a peer supporter or a resource, and how we all come together to create this perfectly aligned chain of support. Today, in celebration of Rochelle's birthday, I invite you to join me in strengthening our chain, Sharsheret, that improves the lives of thousands of women and families nationwide every day.

From Survivor to Victor

Linda HarelickFour years ago I was diagnosed with breast cancer and two years ago I started my triathlon journey. Having barely any athletic experience, I decided to challenge myself with a humongous goal -- as if completing active treatment wasn’t enough of an accomplishment! For me, the survivor moniker did not feel right and I wanted to think of myself differently. I wanted to be victorious. So, I took swim lessons, joined an outdoor cycling group, and ran laps (to be honest, more of a jog/walk) and followed the on-line weekly training schedule courtesy of Team Sharsheret. Along the way I learned that my insane goal and seemingly ridiculous training schedule, jaw-dropping to many of my friends, was an inspiration to women who had gone through similar health challenges. I realized that a goal I had set for myself, which could be considered a selfish act given the amount of time it was taking away from my family and friends, was also helping others to feel brave and strong and awesome! So, this year once again, I will jump in the Hudson, ride the West Side Highway, and run (jog/walk) in Central Park both as a cancer survivor and victor. And, when my body is saying “no way, I can't go on,” I will think of all the women who I have inspired and who have inspired me in return.

To make a donation click here http://sharsheret.donorpages.com/Triathlon2016/LindaHarelick/

Integrative Oncology Esthetics: Protecting your skin from the effects of cancer

Miriam Friedman is a Licensed Medical Esthetician.  Her passion for Oncology Esthetics came from experiencing cancer as a caregiver and an in depth knowledge of cancer treatments and their effects on the body as a whole. As a medical professional she remains positive and supports a strong and healthy recovery.

Out of the field of Integrative Medicine, emerges another integrative field that is 100% focused on the healing, management and prevention of skin related side effects of cancer therapies.  Cancer treatments (i.e. chemotherapy, radiation and surgery) present numerous skin conditions because of toxicity to the body with many manifestations on the skin.  Radiation therapy damages skin cells from the external beams that are in the path of the radiation to the targeted eradicated cancer cells resulting in topical soreness and irritation.

Skin reactions can afflict individuals ranging in intensity from mild to severe, and at different intervals during and post treatment. Healing times will also vary from person to person and therefore all oncology esthetic treatments are individualized to meet the specific needs of the client.

The most common side effects of cancer treatments are as follows:

  • Dry Skin (disrupted sebum/oil production)
  • Dehydrated Skin (Trans epidermal water loss)
  • Itchy Skin (toxins in medication)
  • Hyper-pigmentation (discolorations of the skin)
  • Photosensitivity (sun burn easily)
  • Radiation Recall Rash (rash caused by chemotherapy drugs with or after radiation)

Things You Can Do to Manage Dry Skin Reactions

  • Wash / bathe your skin in tepid water. Take showers or short cool baths instead of steam showers and long hot baths. Bubble baths should be avoided.
  • Use ultra-calming mild body washes and cleansing gels on all exposed skin and scalp. Soap, particularly perfumed and deodorant bars are harsh and irritating. Any products containing fragrance including perfumes and various body sprays should not be avoided.
  • Dry yourself by patting your skin with a soft towel, rather than rubbing vigorously. Moisturize your skin while still damp for better penetration of ultra-calming cream.
  • Avoid anything you think you might be allergic to. (I.e. Allergy causing agents, detergents, plants, pets, harsh chemicals in household cleaning products, latex gloves, jewelry, grass and pollen, artificial fingernails and adhesive, cosmetics and alike).

There is help

  • Skincare and spa-like therapies help relieve the negative side effects of anti-cancer treatments in an environment that is safe for both the patient and Esthetician.
  • Therapeutic facials address the face, neck and décolleté areas to soothe any side effects and help rebuild the skins barrier. Revitalizing and restoring skin to its optimal health which will allow a person to become more relaxed and thus promote healing.
  • Proper product selection is critical and therefore all skincare products focus on creating a positive effect on skin to hydrate, soothe and aid in the healing process.  Formulations are simple yet effective and designed specifically for sensitive skin.
  • Taking time out for oneself is a good way to keep focused on personal interests and self-worth, there is life outside of cancer.

Looking forward to a healthy recovery.

Please note: any skin care treatments, advice or guidance should always be discussed first with a medical professional.  

Riding for Sharsheret

If I look tired it’s because I am.  It was my first time riding 77 miles in one ride.  Why am I training?  I’ll get to that in a bit.

My Mom was diagnosed with breast cancer when I was a freshman in college.  Thankfully, she is healthy today. 

I needed Sharsheret.  Away from my family at school I felt helpless and scared.  These are familiar feelings for any family in a similar situation.  Our family depended on Sharsheret and I am so thankful for their support. 

My parents always prioritized fun family time, exercise, and experiences.  We’ve taken countless bike trips together and even centered a whole vacation around time on the velocipede.  Our week spent bike packing through Banff National Park in British Columbia, CA with Backroads was as transformative as it was memorable.  Riding through the mountains enjoying expansive views, and shifting focus from wide open country side to soaring peaks still white tipped with glacial remains was a humbling and empowering experience. 

For me biking is a way to be outside, to exercise, and to manipulate a machine in an environmentally friendly way. I love it.  

As a resident of the Hyde Park neighborhood in Chicago I wake up every morning to the awe-inspiring shoreline of the great Lake Michigan.  This summer my parents and I will ride around the lake, 100 miles per day for ten days.  To elevate the trip I am raising money for Sharsheret.  

Please consider donating to Sharsheret to facilitate their work which is invaluable.

http://sharsheret.donorpages.com/TeamSharsheret/RollinForAReason/

Thank you!

Learning To Be Myself

As the youngest child in a stereotypical Jewish family, finding independence has always been a process for me. I may be 27, have a full time job, and rent an apartment in the city, but grandma still calls to check on my scraped knee.

Then last fall, I was diagnosed with breast cancer. After spending my twenties trying to prove I could do things myself, I suddenly wanted nothing more than for my parents to live my life for me. What surgery do I get? What do I say at work?

When forced in a corner, you have two options: curl up into a ball and watch the entire Netflix catalogue (admittedly tempting) or, be the best version of yourself in the short and long term.

Step one was admitting I needed help, and finding the right format for that. For me, Sharsheret was the best choice. I needed someone who would quench my thirst for information; listen to me alternately complain about or praise my family; and provide suggestions in how to maintain privacy in my supportive, but sometimes intrusive Jewish community.

Step two was to lean in to the love from my family and friends. You can be independent without going it alone. Whether it was daily gifts, group internet chats, or visits with Chinese food in hand, everyone in my life stepped up to the plate. They couldn’t actually go through recovery for me, but they made it less lonely.

Step three is simply learning to be myself again- not just physically in the short term, but emotionally in the long term. I’m still on step three. Since my surgery I’ve gotten a new job with more responsibilities. I’m training for a half marathon. And I’m writing this blog. Once you’ve put so much work into regaining physical independence, actively working to better yourself in other ways becomes more important— scraped knees be damned.