Our Voices: A Blog by Links, Callers and Volunteers

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!

 

 

Q&A With Karen Beilin!

Q: When did you start volunteering at Sharsheret?
A: It was September of 2011. I came in to buy tee-shirts for the Race for The Cure Breast Cancer Walk and asked about volunteering. I was asked when I could start. I was there the next day stuffing envelopes and have been there weekly ever since.

Q: What have you learned from your time at Sharsheret?
A: How devoted everyone is at Sharsheret and how much they care for each individual and family affected with breast cancer. I am very impressed with the dedication of both the paid staff and volunteers, all of whom have helped Sharsheret grow from a local to a national organization.

Q: What is your favorite Sharsheret memory?
A: Being in the office and having a chat with Rochie. She was smart, funny and insightful. She was very inspirational to me.

Q: What do you like to do when you're not busy at Sharsheret?
A: I love spending time with my husband and children (pictured above). I also love to travel whenever possible.  One of my hobbies is needlepoint; it’s my way of being creative and productive. (And it is a good excuse to watch TV.)

Q: Why do you volunteer at Sharsheret?
A: When I first started volunteering at Sharsheret, I was always greeted with a smile and a cheer, and that has continued even though I have been there for 5 years.  Why I have volunteered Sharsheret for the past five years is easy, the people who work there are amazing. They are truly dedicated to helping those who are touched by breast and ovarian cancer. Helping out in the office, whether it is data entry or simply stuffing envelopes, is my way of helping those who helped me when I was first diagnosed with breast cancer. It gives meaning to my week and it also keeps me out of the malls, so
it's a win-win!

My Road to Joining Team Sharsheret

It all started with the simplest of emails.  A member of Sharsheret’s Support Team was just checking in.  I suppose most of the time she receives emails back saying something to the effect of “Thanks.  Doing great!”.  I don’t think she knew what she was in for when I responded with the following:

I was just thinking about you this morning!  I'm so sorry it's been a long time since we were last in touch.  My father in law passed away, so we were in Idaho helping take care of him while he was in hospice.

Just after that, a friend of mine who is not much older than me and had gone through the same diagnosis as me, had her breast cancer return with metastasis to the bone.  It was absolutely heartbreaking to find out and really got me down for a while.

I recently decided as a means to get myself out of bed and out of a funk, to make a goal of running a half marathon.  I signed up for one out here in Seattle for later this year and then contacted Sharsheret to ask if I could represent the organization in it.  Long story short, I was asked to join the Sharsheret team in the upcoming NYC half marathon!  I don't know what I was thinking, but I agreed to it.  I've never been a runner and I'm terrified I'm going to be in dead last place, with the crews cleaning up the course ahead of me.  I really don't want to let you guys down.

Anyway, aside from working a lot to keep me occupied, that's what's been going on. I hope all is well around there.

Much love,
Tiffany

The next day I received an email from my Sharsheret counselor which included the following few lines:

While most people might get out of their funk by eating a pint of Ben and Jerry’s, you decided to take on a half marathon!  I can’t believe it!  I can’t imagine the pride your family must be beaming with…and I know you’ll make Sharsheret proud too (no matter when you finish)!

In addition, many well wishes were sent my way as I embarked on my half marathon training.  I’m glad that I came across Sharsheret when I did.  I was able to not only receive support for myself, but also help to continue the chain through my Team Sharsheret contribution.  Here’s hoping I can achieve that goal…and the goal of beating the cleaning crew to the finish line on Sunday.

Recent College Graduate to Cancer Patient

I was just like you. I sat in the very same chairs you are sitting in right now. I listened to speakers talk about their experiences with breast cancer and ovarian cancer and how Sharsheret helped them to overcome their most difficult battles. I chose a major, minors, and took classes that seemed most interesting to me. I was involved in Jewish life on campus to help myself grow as a person and as a leader. I was in a sorority and a sisterhood that always supported each other. I was just like you, and then one day I wasn’t anymore.

On June 11th, 2015, I went in for a CAT scan for some stomach issues I had been having. I was expecting to hear that I had mild stomach issues that could be treated with medication and change of diet. That night I received the call.

“We found a 17 centimeter tumor in your right ovary. We don’t know anything about it other than it is there and you need to make an appointment with your gynecologist right away.”

I called my mother frantically and crying hysterically telling her about the call I just received. She raced home. We called a number of doctors. There were many questions and few answers. It all of a sudden became real. Just like that, I went from a recent college graduate to a patient.

Many people name-dropped Sharsheret to me. I decided that I would consider giving them a call if, and in this case when, I did find out that my tumor was cancerous. I was very concerned that because of my young age and rare diagnosis Sharsheret would not be of assistance. Boy, was I wrong.

The first time I spoke to a member of the support team, I was told they would do everything they could to support my social-emotional needs, at whatever time or place I was. Sharsheret would also find someone who had the same or similar diagnosis at the same age for me to speak with, a peer supporter as they call them. I told them that it would be nearly impossible to do such a thing because my diagnosis was so rare, one in more than a million. I got a call back within the next few days that Sharsheret had in fact found a peer supporter for me. My peer supporter was everything that I hoped I could become. She had been diagnosed in the fall following her college graduation. After a year of surgery and treatment she was able to get back on her feet. Today, she is 34 years old and a successful corporate lawyer in Manhattan. For me, her story was the light at the end of the tunnel. My peer supporter was the first person I contacted when I got my final diagnosis. She was the person I spoke to about what it would be like to lose my hair. And she was the person who gave me the support I needed to get through to the next day.

Not only did I have my peer supporter as a part of my support system but I also had my contact from the support team. In the beginning of my journey I called Sharsheret often with questions and concerns. Looking back, I called during my most difficult moments, including when I was losing my hair, and in my happiest moments, like when I was done with treatment. About two months into my treatment a good friend of mine told me that she was planning to coordinate a bi-coastal walk initiative, one to be held for my family and friends in LA, and the other for family and friends in New York. Choosing Sharsheret as the beneficiary of our fundraising efforts was easy for us. Sharsheret had been there and continued to be there in the best and the worst of times for me. When my friend told me the walk in New York would be in November, I dreamt of the idea of attending. All I needed was permission from my oncologist. I told my Sharsheret counselor that I had thought of coming to the walk in New York with the permission I needed. The first thing she said was that if I was allowed to go she would be there, too. Now, that is support. I was lucky to be given permission to go and spend time with friends and family in New York, and attend the walk. There were over 200 people walking and running with us.

Sharsheret has been there for me in the best of times and worst of times and has truly made this experience so much easier for my family and me. From the peer supporter Sharsheret put me in touch with to my many conversations with the support team; Sharsheret has been there through it all. I finished treatment at the end of September and have since been considered in remission. Thanks to Sharsheret I know that I have them to fall back on for whatever I may need no matter how grim the circumstance. Sharsheret taught me to see the light at the end of the tunnel.

To view the full presentation, click here.

Recalculating

As we approach the Passover holiday, we recall the journey that the Israelites took when they left Egypt, a journey that took them from a place of familiar (albeit enslaved) circumstances to a wilderness of unfamiliar twists, turns, and obstacles.  Their guidance system?  A Cloud, a symbol of God’s presence, which guided the Children of Israel through the desert.  As they traveled on this difficult journey, they quickly learned that there were to be many unexpected detours, obstacles, and challenges to be faced.  When they mistrusted the process of the journey, the results were certainly not great – especially when their resistance led to the building of the golden calf.   Difficult and variable journeys can be hard to navigate, especially when they present undesirable turns or unanticipated delays, but trust in the process can be so effective in managing the challenges.

Michelle Stravitz, a Sharsheret Peer Support Network participant, shares her cancer experience, mirroring this theme of unexpected journeys when facing a cancer diagnosis. Her message is timely as we are about to sit at our Passover Seders and contemplate past and future life journeys.


I don’t really like the GPS in my new car.  With my old GPS, I could press just one key and the route would be listed clearly and concisely, step by step; and as a result, I would know the full route just when I began driving.  I knew not only the next step and when to anticipate it, but the entire route, all the steps I was to encounter, when, and for how long.  With my new GPS, I get a clear, colorful map of the road I’m on and the next turn to make, but not a route list.  I miss my route list!

I’m a planner.  I always plan my week’s work carefully, our vacations down to the day, my children’s b’nai mitzvah weekends well in advance.  I plan ahead for family dinner menus, schedules, even my own exercise regimen.

When I was first diagnosed with breast cancer, thankfully the doctors laid out a clear 9-month treatment plan.  First, I would have 5 months of chemo, followed by surgery and 6 weeks of radiation, with a little time to heal in between and after each phase of treatment.  Despite the shock, the fear, the overwhelming amount of new information that I had to absorb and the new reality to which I had to adjust, the step by step plan that was laid out in front of me was comforting.  I had a plan to cling to.  A way through this nightmare.  A road map. 

But when the plan changed along the way; or a sudden detour, unexpected bump, sharp turn in the road, or change in direction came up and the doctors weren’t sure what to do with the information, now that was really tough.   Whether it was a new pathology report, a second opinion, an unexpected complication from surgery, the announcement of a new clinical trial or the results of a new study, suddenly my GPS was RECALCULATING.  And recalculating. And recalculating.  The hardest part was the recalculating phase- waiting for answers, for clear directions from my medical professionals, for test results to come back, for decisions to be made.  It was so hard not knowing what was coming next, what was expected of me and what my newest reality was going to be.  It was, at best, unnerving; and at worst, terrifying.

While the GPS was recalculating, my mind would work overtime on the possibilities: Would there be more chemo?  Would I need some new medication?  Was this side effect permanent?  How would I adjust?  What was my next step?  What would that look like for me, for my family, for my future?

Sometimes, despite the difficulty of what is to come, it is comforting to have a plan.  When that plan suddenly changes – or worse - it needs to change but isn’t set yet, a patient can feel unnerved, unsettled, and uncertain.  Truly, there was enough uncertainty with the diagnosis of breast cancer, with the fear of recurrence, with unknown long-term side effects of treatment, I didn’t need any more uncertainty or fear in my life.

But recalculating is often part of the breast cancer experience.  It’s simply part of life.  Not everything goes according to plan- or I wouldn’t have gotten breast cancer in the first place!  Like everything else on this rollercoaster ride, it’s how we cope with the changes, the new information and the period of recalculating, that really matters.  For me, I had to learn to suspend the need for that GPS route list.  I had to stay in the moment, to focus on one day at a time, to use mindfulness and to think only about the step at hand, the street I was currently on, and maybe, just maybe, the one immediately after that.  And, while terrifying and unnerving at times, it was also somewhat liberating.  I would ask myself, “Am I okay at this moment?”, “Are my kids okay at this moment?”, “Am I surviving at this moment?”  And if the answer was yes, then I was okay.  At this moment.  For this step.  For this one turn.

Eventually, the GPS would figure out the new route, and tell me my next move.  ONE. STEP. AT. A.TIME.

Michelle Stravitz is an event planner with Atelier Events, LLC, a PCI-Certified Parent Coach, and the mother of four children, ages 14-22.  Michelle connected with Sharsheret in the summer of 2015, shortly after being diagnosed with Triple Negative Breast Cancer, Stage 2, and looks forward to being a peer supporter for other women like herself.  She has appreciated Sharsheret’s incredible support, most especially her Sharsheret counselor’s wealth of metaphors to help her see her way through different phases of treatment (and worry!) and most recently the incredibly insightful webinar on the Emotional Rollercoaster of Survivorship.

Think Pink at Congregation Kehilath Jeshurun

Marsha Dane Stern was an Aishet Chayil who passed away at the age of thirty-six from breast cancer.  Her life of devotion to Jewish education, love of Israel, chesed and family continues to serve as an inspiration.  In recognition of the completion of her thirty-sixth yahrzeit, her sisters, Gail Propp, Sharon Dane and Wilma Kule and her children, Douglas Stern and Deborah Stern Zimbler, partnered with the KJ Sisterhood and brought THINK PINK to KJ in order to raise awareness about the importance of cancer screening and knowing one's family medical history.

The event commenced with a challah bake, bringing together over 100 women who were coached by ‘The Challah Girls’ in the spiritual art of challah baking.  There was excitement and camaraderie in the room as everyone got down to the business of preparing the challah dough.

While the challah was rising, Dr. Karin Charnoff-Katz, a breast radiologist, addressed the women with a presentation titled, "Cost Benefit Analysis: An Argument for Sharsheret and Screening Mammogram."  Geneticist and founder of MyJewishGeneticHealth.com, Dr. Nicole Schreiber Agus, then presented, "Beyond Recipes and Traditions: What You Need to Know About Transmission in the Jewish Community as it Relates to Cancer Risk."  We learned that one in forty Ashkenazi Jews carry the BRCA gene mutation, which is nearly ten times the rate of the general population, making Jewish families more susceptible to hereditary breast, ovarian, and prostate cancer. The importance of screening was stressed by both speakers.

Following the informative presentations, we learned about the mitzvah of making challah and then began the braiding process.  The women channeled the sculptors within, fashioning beautiful challot.  At the end of the evening, everyone went home with numerous challot ready to be baked and enjoyed on Shabbat.

Pink doilies and kippot aplenty were in view Shabbat morning as Pink Shabbat continued, featuring Dr. Naamit Kushan Gerber, a radiation oncologist.  Dr. Kushan Gerber addressed the congregation during services about the role of data in making personal medical decisions, particularly as they relate to genetic testing, breast and prostate cancer screening, and treatment options.   Her speech, entitled, "The Half-Shekel: Knowing and Counting”, also raised awareness of the existing guidelines for screening.

Services were followed by a beautiful hot kiddush, complete with delicious pink ribbon cookies and a wonderful assortment of gluten free cakes generously donated by our neighborhood bakery, By The Way.  Helene Godin, proprietor of By The Way, lost her beloved mother-in-law to breast cancer and therefore found it to be especially meaningful to be a part of Pink Shabbat.

Think Pink provided a valuable service, underscoring the role that the KJ Sisterhood plays in the KJ community.  If either program encouraged just one person to undergo cancer screening or genetic counseling, then the life of Marsha Dane Stern continues to inspire.