Our Voices: A Blog by Links, Callers and Volunteers

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.

Sharing the Unexpected Journey with My Dad

It’s June which means it’s Father’s Day and Men’s Health Month.  My dad and I had a connection no child and parent should ever have.

In May of 2010 my life was changed forever when I was diagnosed with Triple Negative Breast Cancer in my right breast.  Shock and anger.  I had a lumpectomy followed by chemo and radiation.  The chemo knocked me on my butt.

As if things couldn’t get any worse, a year later at my year-mark mammogram, I was diagnosed with Triple Negative Breast Cancer AGAIN.  This time in my left breast and unrelated to my first diagnosis.  More shock and anger.  I had a double mastectomy followed by more chemo and radiation.  The chemo knocked me on my butt again.

The following year my life was completely shattered when my dad told us HE had metastatic cancer.  Turned out he had Triple Negative Breast Cancer too.  Yes, my DAD!  This time the shock and anger was much different.  It was worse for me to hear my dad, who I was so close with, had cancer.  And not just cancer, but Triple Negative Breast Cancer – the same exact kind I had, twice.  Knowing what I had just gone through, I didn’t want my dad to have to face this.  It was so hard for me to endure the chemo at 39 and 40 years old, so how would it be possible for my dad to handle the chemo in his 70s?

Unfortunately, it’s all too common to hear of female relatives - mother and daughter or sisters - sharing a breast cancer diagnosis, but FATHER and daughter?  What perplexed the doctors even more was we were both BRCA negative.  How could this be?

It’s hard going through cancer and chemo.  It’s also hard knowing no one can truly relate to what you’re going through.  I had pure empathy for my dad.  One day when he was having a bad chemo day he said something to me I will never forget: “I knew you were sick when you were going through chemo, but never had any idea how bad it was.  Now I know exactly what you went through.  Now I understand.”

My favorite memories of my dad were seeing him enjoy his time with my kids, Lily, Zach and Emma.  He was an amazing father who instilled so many values in me, and he was an equally amazing grandfather.

Rochelle and Sharsheret came into my life by luck.  Sharsheret helped me when I went through my cancer journey, and now Sharsheret is helping me share my dad’s story and advocate for male breast cancer awareness.

This will be my second Father’s Day without my dad.  It doesn’t get easier, but what I do know is we need to raise awareness and educate everyone NOT only about breast cancer, but also about MALE BREAST CANCER.  Because, men have breasts too.

 

You can read more about Amy’s family’s story by clicking on the following links:
http://malebreastcancercoalition.org/Survivor%20Stories/bernard-berins/
http://bit.ly/1F4oEk6  (Pt1)
http://bit.ly/1IHx1ck   (Pt2)
http://bit.ly/1cAzTtp   (Pt3)
http://bit.ly/1MPAGDu (Pt4)
Click here to learn more about The Male Breast Cancer Coalition.

Wherever You Go, I Will Go

ShavuotOn the holiday of Shavuot we read from the Book of Ruth. This story highlights the relationship between Ruth and her mother-in-law, Naomi. In the opening lines we learn that Naomi encourages Ruth to leave, as she does not want to burden her or hold her back.  Without hesitation, Ruth responds, “wherever you go, I will go.”

Sharsheret’s support program mirrors the relationship between Ruth and Naomi.   Every day we live by the motto “wherever you go, I will go”, providing support and lifting burdens along the way.  Our very dedicated Peer Supporters offer comfort, guidance, hope, and company along the journey.  Over the years we have been on the receiving end of hundreds of emails and phone calls from callers who cannot say enough nice things about their peer supporters, from their care and concern, to follow up, to practical ideas as their caller moves forward with her decision making, treatment, survivorship and beyond.  If ever there was an embodiment of “I go where you go”, it is never more evident than when a caller and peer supporter are matched.

This notion of sharing the journey is embraced by those who race on Team Sharsheret, volunteer, donate, and raise awareness, exuding the strong message of we are here with you and for you.  The Sharsheret (chain) is strong because caring for another is embedded in our history, as we see with Ruth and Naomi.  May we continue to walk this journey together, share wisdom, gifts, strengths, stories, and most importantly, inspiration.

“The people I spoke with were knowledgeable, helpful and very caring.  I felt embraced and valued by people I'd never met and will forever be connected to.”

My Heart is Stretched

Ruth Ebenstein"That lump is cancer. If the pathology report comes back negative, I'm going to think it's a mistake."

Like a bomb dropped in my lap, a radiologist unloaded this sentence. Did he not see the baby I was nursing on my breast? In an instant, my life plans crashed. Forget my wish for a fourth child. Was I going to live long enough to rear the three little ones that I had?

Three weeks later, I had a lumpectomy and an axillary dissection. After two months of back-and-forth, the doctors blessedly decided that I did not need chemotherapy.  I had twenty-one sessions of radiation, and then I was "done".

Now, what?

Nobody had forewarned me how hard it would be to return to my normal life; that in fact, I would have to survive "surviving".

But how?

My doctorate in Holocaust history had lost its allure. I wanted to save lives! Yet how could I do that, with zero medical training?

A chance conversation opened a door. Over sweet potato soup, a doctor friend told me that cardiovascular disease kills more women in Israel than all of the cancers combined. Sadly, women don't even know it, she lamented. Israel has no Go Red for Women campaign. If women knew the causes and signs of heart disease, they could save their own lives.

Channeling my political acumen and activist bent, I lobbied with doctors and politicians in the Knesset (Israeli parliament) to put this topic on the national agenda. We zeroed in on raising awareness about heart disease amongst those whose health risk was the most severe—one girl, one young woman, one adult at a time.  My efforts bore fruit. On March 10, 2014, the Knesset Committee on the Status of Women convened to discuss women's heart health.

From breast cancer survivor—to heart health activist?! Yes, I know. Not your natural trajectory. A strange, and even unexpected, evolution. But I grin broadly when I think of the awareness we've raised, and the lives that we've saved! Cancer certainly stretched my heart.

That's the thing about trauma. If you open yourself up, it can change you for the better. With a little luck, you'll discover wings that you never knew that you had, spread them—and fly!

Of course, you're probably wondering how a woman in Jerusalem got helped by Sharsheret! Here's how: After completing all my treatment, I was told that I would have to get shots to shut down my ovaries. I panicked. I had responded poorly to birth control pills; how was I going to survive this doozy of a hormonal roller coaster? Through Sharsheret's Peer Support Network, I was teamed up with a peer supporter, an incredible woman who quickly turned into a cherished friend. She helped me navigate the process with sage advice, humor and hand-holding (through the phone and email!). It is no exaggeration to say I may have not survived the journey without her. Thank you to my peer supporter! Thank you, Sharsheret!

An American-Israeli writer, historian, public speaker and health activist, Ruth has written and spoken about how an unexpected close friendship with a Palestinian emerged out of breast cancer. She has had five speaking tours in the US and is penning a memoir about her experience, tentatively titled Ibtisam and I: How breast cancer fostered an unexpected friendship across the Israeli-Palestinian divide. Galvanized to help others, Ruth became an advocate, promoting women's health. She now lobbies the Knesset and works with Hadassah Medical Center in Jerusalem to promote women’s cardiovascular wellness among populations with the greatest need: Ultra-Orthodox women, Arab Israeli women, and those with disabilities, in addition to the general Israeli population. Ruth's story has been covered by the BBC, NPR, The Atlantic, Alhurra TV, and Share America (the U.S. State Department's platform for sharing compelling stories). Follow her on https://www.facebook.com/Laugh-through-Breast-Cancer-Ruth-Ebenstein-3206... and on twitter, @ruthebenstein. Her website is LaughThroughBreastCancer.com.  Her uplifting message: you can turn something bad into something good.

Eating Right through Passover

When Passover rolls around, we all search through the house, furiously purging our homes of anything that is bread-related. Finally, when all the pasta and cereal are gone we suddenly feel ready to welcome our springtime holiday. The problem is that the leavened products are not the only "plague" with which we need to be concerned.  Holiday time means indulging time and just because we are not eating pasta or rice (depending on your traditional practice), does not mean that we are eating healthfully.  According to a study at The University of Texas MD Anderson Cancer Center, "The high amounts of dietary sugar in the typical Western diet may increase the risk of breast cancer and metastasis in the lungs."

So what does this mean for us as we guzzle down four cups of wine and top it off with our favorite chocolate chip macaroons or mandel bread?  It means that sugar is the other white culprit of our Passover experience, not just leavened white flour! Passover, laden with emotionally charged foods, exposes us to nutritional challenges waiting in the wings.  Some of our fondest memories are of those foods that elevate our risk.

Knowledge is power. Know what you are putting in your body by becoming an avid and educated label reader.  When you read a label keep in mind that four grams of sugar are equal to one teaspoon of sugar.  It does not matter if the sugar comes from sucrose, or honey, or agave.  They all have the same impact.

Remember that simplicity is key.  Eat plenty of fresh vegetables and fruits that are not too high in sugar.  You can purchase matzoh that is made with whole grains, spelt, rye, and whole wheat.  When you are making your favorite holiday treats, cut the sugar in half. Nobody will know the difference.

Another way to make your exodus out of the land of sugar is to eat filling and body fueling foods.  Protein should take center stage at the meals. Fish, chicken, turkey and some meat keep us satisfied and aid in keeping our blood sugar levels from falling.  Good quality oils, such as olive oil, walnut oil and grape seed oil, all of which are available as kosher for Passover products, bump up the satiety factor of salads and cooked vegetables.

Certainly there are those very special treats that you must have.  If there is a special food that makes the holiday for you, then plan to have it.  Make sure that the treat is the best variation of that food.  Plan when you are going to have it.  Eat it sitting at a table, and slowly enjoy every morsel.

Let’s try to make this Passover one in which the quality of the food is incorporated into the standards of Kosher for Passover.

Barbara H Smith Ph.D. is a practicing Clinical Nutritionist for 30 years. In addition to her private practice she has lectured in the Tri State area on Nutrition and Healthy Lifestyle.  She has broadcast on the Stamford radio station on Nutrition. 

Sharsheret Celebrates National Volunteer Week 2016

Thank you again to the more than 6,000 Sharsheret volunteers who help grow our community and strengthen the Sharsheret chain. Missed National Volunteer Week 2016? Check out the videos and blogs our incredible volunteers sent us!