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Naomi Baum is a psychologist and trauma expert, and the author of Life Unexpected: A Trauma Psychologist Journeys Through Breast Cancer and Free Yourself From Fear: The Seven Day Plan For Overcoming Your Fear of (Recurrent) Cancer.
One of the issues that anybody with cancer has to confront early in the game is how and with whom to share this news. For me, this was the first big hurdle in navigating the cancer journey. Here are a few things to consider while deciding with whom to share, and when and where this sharing will take place. While there is no one correct response as every person with cancer is unique, several parameters of this decision are worth considering.
Decide with whom to share your news
The first question to think about, is how open or private you wish to be. Do you want to keep the diagnosis a secret? Do you want only family members to know? Do you want to post it on Facebook and start a blog? It is your choice.
I can make a good case that life is much easier if you let go of secrecy, and share the news freely with family and friends, but this may not suit you, your lifestyle, or your work circumstance. For me, sharing the news, and dissolving the secrecy was both liberating, and created around me a tremendous outpouring of support and love. This aided my healing process immeasurably, and when I made the decision to share the news soon after diagnosis with all of my family members from elderly parents to young grandchildren, I felt a burden I did not even know was there, lifting from my shoulders.
I shared the news first with my immediate family, my children, parents, siblings, and then with my closest friends and colleagues. I stressed to all of them that this was not a secret, and I urged my children to talk with each other so that they could be supportive of each other in a way that I, as their sick parent, could not be. I left the work of spreading the news farther, to the natural grapevine. Unless you swear people to secrecy (and even then, there are no guarantees), you can expect your news to travel.
Do it in person
Do not underestimate the importance of sharing your news in person, particularly with people who are closest to you. If there is one mistake I made in this process, it was taking the short cut of telling a family member that I had cancer, over the phone. The reason to tell them in person is that despite all the advances in technology, there is nothing like face-to-face communication. When you talk to someone face to face, they can see that you are still the same person; you can gauge their reactions, and clear up uncertainties. Often, at the time of diagnosis, you will still look like you always have, and that can be reassuring as well, particularly to children.
Prepare a short script
This is not going to be an easy conversation, particularly the first several times you do it. You can be sure that the person you are sharing the news with will be more surprised than you are and will find it difficult as well. Preparing several opening sentences can ease the way for you into this conversation. Often, the direct approach is best. I started with something like this:
"I have some news to share with you that isn't so good."
This warning gives your friend or family member a half a second to prepare themselves. I then continued:
"I was diagnosed with……"
Additional parts to the conversation might include what the doctors have told you, your next steps, and the kind of help you may need or expect from them.
Share short and pertinent details
While I am a strong proponent of unlocking the secrecy surrounding cancer, and I shared the headlines freely with family and friends, I found that I did not feel like sharing all of the gory details with everybody. You did not choose to have cancer, but you can choose whom you share your story and how much you tell. If people ask questions that you prefer not to answer, do not feel forced to reveal everything. This is your choice and you are in control of the information.
For many people, short disclosure and a few pertinent details are enough. It is up to you to set the tone as to how much you want to share. Practice saying, "I'd prefer not to discuss that." The person you are talking to will usually take heed, but if they persist you can explain that while it is important for you to let them know that you have cancer, you prefer to keep the details of the extent of the cancer and the kind of treatment you will be receiving, to yourself. It is certainly your prerogative. This is one small way for you to take back some element of control into your life.
We didn’t know what to expect. We set five tables with pink tablecloths, pink plates, and pink utensils. The food was all cooked and ready, now we were waiting for young Jews in the Seattle area to show up to our home. About 15 minutes before 6:30 pm (our called start time) people started showing up. First a few individuals here and there, next a bunch of couples, and finally the big groups. Before we knew it we had 48 people sitting down for Kiddush (blessing over the wine) and Motzeh (blessing over the bread), with another 15 or so walking through the door throughout the rest of the night. The dinner was a huge success and there was an incredible energy in the room, and because of that energy I was a bit nervous to stop the dinner and speak about Sharsheret. However, as soon as I stood up to speak the room quickly became quiet, and I successfully delivered my few words about Sharsheret and its founder Rochelle Shoretz – I had the pleasure of hearing her speak when she came to visit the University of Maryland a few years back. After I finished, we opened the floor to anyone at the dinner that wanted to say a few words about breast cancer or cancer in general. Two people delivered incredible impromptu speeches, one of whom was a young woman who discussed her friend’s recent battle with cancer. She described the indelible impact Sharsheret had in helping her friend, a recent college graduate, navigate a new, and challenging part of her life.
The dinner was an incredible success and we are very thankful Sharsheret could be a part of it. We are blessed to further Sharsheret’s mission in supporting Jewish women and their families in their fight against breast cancer.
The poet Yehuda Amichai must not have been privileged to have an encounter with Rochelle Shoretz, the founder of Sharsheret, when he crafted the poem:
A man doesn't have time in his life
to have time for everything.
He doesn't have seasons enough to have
a season for every purpose.
Ecclesiastes was wrong about that.
Rochelle Shoretz, a woman who embraced her gifts and used them to navigate her challenges, was 28 years old and had just finished clerking for Justice Ruth Bader Ginsburg of the United States Supreme Court when she noticed an indentation in one of her breasts. It was Stage II cancer, and she beat it. While on chemotherapy, she opted to decline lucrative and prestigious legal jobs, and instead began Sharsheret, an organization that supports thousands of young women with breast cancer.
I think it best to help each of you understand exactly how incredibly special Rochelle was by sharing with you her own words from a journal she kept a few years later in the aftermath of receiving a diagnosis of advanced breast cancer. One of many poetic entries read:
This morning I went to say Birchat Hachama – a blessing on the sun that is recited every 28 years-with my friends…I had heard about the blessing in Synagogue last weekend, but I didn’t quite recognize the significance of the event until my friend came to visit last night. She insisted that I go this morning and taught me that at the end of the recitation of the blessing, you are supposed to turn to your right and to your left, and tell each person standing next to you, “See you in 28 years.”
I’ll take 28 years.
So this morning, as the clouds parted to make room for the sun, I recited the blessing with friends and we promised to meet back in the park in 2037. Then we danced…It was cold, but the sun was shining and I was in the park with the people I love….”
Rochelle, otherwise known as Rochie, by those of us privileged to really know her, did not receive the gift of those 28 years. But she knew how to make every single moment count, so her “years” were longer than most of ours.
Her secret was that she “stayed in the sunshine,” after all as she herself often cited, “It costs the same as staying in the clouds.” A dear friend of hers who spoke at her funeral expressed that “Rochie’s life was painted in huge brushstrokes. She always fired on all 6 cylinders.”
Testimony to that energy is that precisely when first undergoing chemotherapy and radiation therapy at age 28, she founded Sharsheret (Hebrew for “chain”), a national organization supporting young Jewish women facing breast cancer.
When diagnosed for the second time with metastatic breast cancer, Rochie wrote:
“As someone living with a sharpened sense of the value of time, I appreciate, that although I have done a lot of amazing things in 40 short years …..nothing has given my life more meaning than sharing Sharsheret’s unapologetically Jewish message worldwide.”
Sharsheret began as an organization of forging links between women who share a language of experience. It offered peer support, and continues to do so, in a very real way, for so many women. Rochelle herself was the first link. The organization established educational programs; cosmetic support for young women undergoing chemotherapy with a “Best Face Forward” initiative; and Busy Boxes filled with age appropriate toys for the children of young women undergoing chemotherapy to help keep the children happy and occupied.
Rabbi Joseph Soloveitchik expounded in an essay entitled Kol Dodi Dofek that when one is suffering: “I ask one simple question: What must the sufferer do so that he (or she) may live through his (or her) suffering? We ask neither about the cause of suffering nor about its purpose, but, rather, about how it might be mended and elevated.”
This is precisely the question Rochie incessantly asked herself. And answered.
Rochelle Shoretz chose to “stay in the sunshine.” She shared that “they often say when you lose one of five senses, your others are enhanced….I wonder if life feels so much more powerful and vibrant to me precisely because I lost some of my health.”
She approached her illness not as fate, but as destiny, building Sharsheret and thereby forging close, critical relationships not only between herself and others but also forging critical connections for a multitude of women who otherwise would have remained so isolated by their illness. What a powerful role model for each of us.
When people ask me to describe my sister Rochelle, I do it in one sentence: She was great at life. She approached any endeavor and obstacle with tenacity and always gave one hundred percent. Her motto, that I’m sure everyone at Sharsheret knows, was that there are no problems, only solutions waiting to be found. Rochelle began running marathons and triathlons after her first diagnosis and has inspired me to challenge my mind and body through her spirited accounts of these achievements. The courage and perseverance she displayed throughout her lifetime has been my ultimate motivator during this emotionally and physically trying time.
Through her deep love for and devotion to family and the Jewish community, Rochelle created Sharsheret to provide the culturally relevant resources and support to Jewish women and their loved ones. In the wake of her passing, Team Sharsheret has given me the opportunity to connect with many people that have been touched by breast cancer, either personally or through a family member or close friend, and I have found immense comfort in hearing about the wonderful resource Sharsheret has been for them and their communities. I’ve heard my sister say that nothing has given her life more meaning than sharing Sharsheret’s mission. While I wish we had gotten the chance to accomplish this by racing together, I can't think of a better way to honor her memory than by continuing her legacy of Sharsheret doing something that made her feel so alive.
I’m running for Rochelle and my entire extended Sharsheret family. This is my first race with Team Sharsheret, but I know it won’t be my last!
Excerpted from a Pink Shabbat D’var Torah
In the Bible, we learn the story of Noah- a man who was righteous for his generation- that took a journey he never would have planned. Since he’s a righteous fellow, God speaks to him-
Noah, I’ve decided to wipe out the earth
Noah, Here’s what you need to do- build an ark! Gather your family, the animals, and food.
Noah has a week to get it all together, and then it rains for 40 days and 40 nights. The water recedes, he sends out the dove, Noah, his family and animals arrive on dry land, and God makes a covenant with the people that this will never happen again, by the sign of a rainbow.
Noah is one story of the Bible that has hundreds, if not thousands of children’s books written about it. Somehow, this story of an unexpected journey is compelling to us, as adults, and as a community. What is it- about a person of character, facing adversity- taking a leap of faith- and coming out on the other side?
Somehow, that seems to be the story of life. For all of us.
One of my friends recently said to me, that sometimes, we have to be reminded that we are actually not the ones driving the bus. Just when we think we have it all together, life will throw us a curve ball.
Here’s my curve ball.
Nov, 2014, I ran the NY marathon, and was inspired by my incredible experience. There is nothing like NY.
I signed up as quickly as I could for the NY Marathon 2015- with the team that supports Sharsheret, a national not-for-profit organization supporting young women and their families, of all Jewish backgrounds, facing breast cancer. I believe in their work, I have friends and family with breast and ovarian cancer, people who face the genetic testing and decisions related to BRCA genes, which can lead to breast and ovarian cancer- and I am touched by this issue and cause. This organization felt personal.
I began my 20 week marathon training plan in June for Team Sharsheret. I raised money for Sharsheret, I learned more about their programs and their services. My mom even began to volunteer in their offices. What started out as a great cause and a great way to run the NY marathon, became personal. In September, 8 weeks before the race, I was diagnosed with breast cancer.
I called my Sharsheret Team Captain, and had to tell her my situation.
I was put immediately into the Sharsheret system. I was connected with a Counselor in their Support team who reached out, and I feel, just keeps an eye on me along this process. She asked about my children and their ages and interests, and sent a “Busy Box” full of quiet activities for when “mommy doesn't feel so well”- They sent materials, brochures and resources- both for me, and for Salomon, as my partner and primary caregiver. Once I knew what procedures and process I was going to have- they connected me to a woman in Maryland, who is trained as a “peer counselor,” and has walked the same path as me. Just yesterday, I received a “pillow of support” in the mail, from Sharsheret’s founding board member.
And the story of the marathon- well, I’m not running NY this year but I kept training, because I don't know what else to do with myself. Running keeps me together physically and mentally. I thrive when I’m on a plan. I decided that once we set my surgery date, I would find a local marathon to run.
I was out with my training buddy one day- and thought of a 40 mile race my friend, Adam Jackson did, a few years ago. I began to wonder- what would it look like if I created my own course and made this a fundraiser and friend-raiser for Sharsheret? And so, the journey began. Oct 8th, I met with Adam to get this envisioned, and 10 days later, (this Sunday!) I will be running a marathon with over 30 friends- and over 25 at support stations along the way.
It has been so much more fun to think about running than about breast cancer. But, yes, breast cancer is part of the story.
And with that, one of my friends reached out to channel 7 news, and there was a great segment about me, this journey and the marathon Thursday night. And then on Friday, kveller.com picked it up, and shared my story as well. It’s been nonstop publicity these past 2 days. Since the segment aired, I have surpassed my $10,000 fundraising goal for Sharsheret.
What is it about an unexpected journey, adversity, and fierce crazy determination that opens our hearts? It’s because it’s in each of us. We have all had to take journeys, like Noah, like me- that were unexpected. We all have to decide how we will embark on these unchosen paths. But the journey is just part of our story- it’s what we make of it that counts.
I am so grateful to Sharsheret, and to our community for accompanying me on this path. Thank you for being here, thank you for being present, and thank you for being part of Pink Shabbat.
I am beginning my senior year at Stern College majoring in biology. The decision to commit the time and effort to run a marathon was a difficult one. However, I'm now all in! Sharsheret is an amazing organization that has made a difference in so many lives and families, mine included. In a time when there was so much unknown and fear, it was a huge comfort to know that Sharsheret was there.
Mammograms are not particularly pleasant. Also in the unpleasant category- getting a letter from the breast imaging center informing you that because your breasts are dense, you also need a sonogram.
I went in for the sonogram. After having had so many ultrasounds during my pregnancies, it was weird to be getting scanned when no baby was involved.
I’m not a nervous person, but I had already worked myself into something of a tizzy as I lay there on the table.
I stared at the technician’s face as she scanned me, searching for a clue. Let me tell you something – I WOULD NEVER PLAY POKER WITH AN ULTRASOUND TECHNICIAN. Then, she starts to type things on the screen:
Really? I ask. Surely you’ve seen worse.
She assured me that “SAG” was only a technical term.
I stop searching her face for clues, and turn to the screen. A few minutes later, after I’m sure I’ve spotted what are many suspicious marks, she types TR.
It is at this point that I move from mild anxiety to full on panic. I was covered in such a thick layer of shvitz, that I was sure I’d slide right off the table.
The tech said nothing. When she left to get the doctor I sat up and waited.
Hours later, the doctor came, all cheer and chatting. I am monosyllabic in my responses.
You ok? He asked.
Kind of, I reply. It’s just been a long wait in here.
Its been ten minutes, he said. I looked at my watch. He was right.
Just tell me. I said. What’s the verdict?
He said I was fine. All clear.
TR? I say, perhaps a bit too loudly. TR – stands for tumor, doesn’t it? I saw her type it. I pointed at the technician. How can I be fine?
Apparently, TR is short for TRAVERSAL, and not tumor. While I’m on the subject of my ignorance, SAG is short for SAGITTAL. Please don’t ask me what either means.
I raced out of the office and grabbed a carrot juice. I sat down on the sidewalk, drank it, and checked my email.
There in my inbox was an email I had received from Sharsheret, an organization which counsels women and families facing breast and ovarian cancer. They had a spot left on their marathon team.
I ran a marathon in 1999 – before kids. I’ve only run halves since then and frankly, were it not for my desire to run the NYC marathon just once, I would have ignored the email.
But I wanted to run it. I also knew, sitting on that sidewalk, that if I’d had a silly panic attack during a routine, all-clear sonogram, women who go through far worse need every ounce of support we can muster, and they need it every stage.
Which is really why I’m running. It’s also why I’m asking you to sponsor me in my run.
With a breast cancer survivor for a mother and a physician for a father, in addition to a strong family history of ovarian cancer, regimented monitoring for abnormalities was routine in my late teens and early twenties. After losing a friend to breast cancer at an early age and experiencing a scare of my own, which led to the removal of a benign lump, testing for the BRCA gene mutation was an obvious decision. There was very little shock when the test results were positive. Though we already had two children, my husband and I made family planning a priority, so that we could begin to take steps toward prevention in a timely manner.
Within a year after my fourth child was born, I began the process of prophylactic procedures to minimize my risk of becoming ill. Over the next two years, I would undergo a bilateral oophorectomy, a bilateral mastectomy with reconstruction, and a full hysterectomy, while enduring a number of minor complications along the way. The road seemed long and the journey had many ups and downs. In the end, the empowerment that came from confronting and conquering the challenges moved me to realign my priori-ties and inspired me to become involved with Sharsheret.
As a peer supporter and a community advocate for Sharsheret, and in speaking about my experiences with the BRCA gene muta-tion, I aim to provide women and their families with the comfort and encouragement that I did not seek when I needed it most. Because of Sharsheret, I have had the opportunity to influence women who may be facing breast or ovarian cancer and to demon-strate that they can meet the challenges head on and then look to the future without fear of inevitable illness. The opportunity to make a positive impact has been Sharsheret's priceless gift to me, for which I am deeply grateful.
While being treated with chemotherapy and surgery for a breast cancer diagnosis, I didn’t feel beautiful; I was depressed, scared and anxious. I stopped wearing make-up those several months; I felt absent from my life and was waiting for the new “me” to unfold. I sought support during my vulnerable months and Sharsheret was there for me even though I am not Jewish!
Since I was on their roster, I received the email that Bloomingdale’s at Riverside, NJ was pairing up with Sharsheret to offer its participants a complimentary makeover and free personal shopping consultation in support of National Breast Cancer Awareness Month. I jumped at the opportunity for free pampering, looking forward to learning tips after my beauty-siesta.
Chelsea, the Bobbi Brown Cosmetic genius that made me over was friendly, compassionate and professional, answering my questions as we went along. I felt relaxed in her chair, trusting her eye; I requested a look for a night out in NYC that evening, so she focused on my eyes, finishing my look with contouring powder and a light gloss on my lips. When I looked in the mirror, I genuinely liked what I saw: my features were accentuated in a natural-looking way, Chelsea took good care in creating her masterpiece, I felt like a superstar my night out! Afterwards, I was given a chart with the list of products used especially for my skin, and was not pressured to buy. I came away feeling like this was an experience to truly help me feel glamorous, not to pressure me to spend money. I thank Bloomingdale’s, Bobbi Brown Cosmetics and Sharsheret for the opportunity to be pampered, seeing myself in a light where I shine, celebrating all that I am today!
What does a healthy life mean to you? I thought I was healthy when I was diagnosed with thyroid cancer at the age of 29. Since then I exercised and ate vegetables and had 2 children. My thyroid was checked every 6 months and I thought I was healthy. Then last year I was diagnosed with breast cancer at the age of 42. Like most women I was busy with my family, work, friends, and life. I didn’t have time for cancer again.
Cancer takes a village. Over tea my sister-in-law asked me if I heard of Sharsheret and suggested contacting them. I followed her advice and was quickly paired with a peer supporter, and Sharsheret sent me an amazing array of packages and resources - all for free! I’m truly impressed with Sharsheret and feel fortunate to have been introduced to such a well-run and supportive organization.
Now I’m recovering from my second surgery in 5 months, and want to continue my healthy lifestyle. There are days I don’t feel like exercising. Staying in bed is tempting. Popsicles are more comforting than fruit. What’s a cancer survivor to do?
Different things work for different women! Here are some things that worked for me.
© 2016 Sharsheret: Your Jewish Community Facing Breast Cancer