Fighting cancer together
Sharsheret, Holy Name Medical Center partner to provide holistic care
You’ve probably seen pictures of old hospital wards.
Those photographs usually show beds lined up on both sides of a long room, a patient lying in each bed, each one covered by a white sheet, the old photo lacking the focus to show each patient as anything other than a blur, indistinguishable from the one in the bed to the right, or to the left, or across on the other wall.
Hospitals then, as recently as a century or so ago, when medicine still was fairly primitive and its outcome likely to be dismal, provided an assembly-line kind of health care. State-of-the-art assumptions then were that each patient was like the next patient. Bodies were similar, problems were similar, solutions were similar.
Although the goal was to preserve human life, and sometimes it did, much about it was inherently and perhaps necessarily dehumanizing.
Medical care is not like that now, but many patients find it is dehumanizing in a different way. Doctors and other health care workers, laboring under the very real need to make as much money as possible for the massive systems for which they work, are allotted only a finite amount of time to spend with each patient. The elaborate battery of tests and machines and procedures they have at their disposal are extraordinary in their ability to enhance and prolong life, but they also can dehumanize in their ability to get in between the health care provider and the patient.
The need to bring back humanism, to bring back an awareness of human emotions, particularly around health care, a subject likely to evoke fear and feelings of shame and helplessness — and at the same time to make sure that the medical care is high level — has driven some hospitals, some social workers, and some former patients to come up with new ways to create relationships with people who are undergoing medical care.
Sharsheret, a Teaneck-based national nonprofit organization, defines its core mission as helping young Jewish women and their families deal with every stage of the experience of having cancer, particularly breast and ovarian cancer. (That description, although accurate, is a bit reductionist. Sharsheret defines “young” broadly — basically, to Sharsheret, young is a self-defined category — works with people with a range of cancers, and does not restrict itself to Jews.) Sharsheret does not refer patients to doctors. Instead, putting its name into action — “sharsheret” is the Hebrew word for chain — it allows the women to become links, gaining emotional support from others who have gone through the experience before them, and then, if they want to, providing support to people newer than they to the challenges of cancer.
Sharsheret has worked with local hospitals and other organizations since it was founded in 2001. Now, it has entered a formal partnership with Holy Name Medical Center, another Teaneck-based nonprofit organization, and with Dr. Sharyn Lewin, who is the medical director of gynecologic oncology there.
Holy Name has been working hard on treating an entire patient rather than her illness, and Dr. Lewin, who is both a clinician and a researcher, focuses intently on that approach. Sharsheret provides support for the patient. Joining forces gives them all more reach and therefore more chance to help improve outcomes and lives.
Dr. Lewin is now on Sharsheret’s medical advisory board. “I am very excited and honored,” she said. She plans to “be an adviser for Sharsheret’s medical endeavors, write for its blog, be involved in speaking engagements and in webinars,” she said. “My role will be mainly educational.”
She is particularly interested in Sharsheret “as a woman, as a Jew, and as an oncologist who takes care of women with ovarian cancer,” she said. “Also I have a real interest in hereditary genetics, so educating the community about the importance of genetic testing has been part and parcel of my being for a long time. I feel that our missions” — Sharsheret’s mission, that is, and her own personal one — “align.”
Dr. Lewin came to Holy Name in 2014; she grew up in Lawrence, Kansas, the daughter of academics (and the granddaughter of a gynecologist, a very strong and unusual woman who overcame the constraints of her time). She trained at Memorial Sloan-Kettering and then practiced at Columbia University’s New York Presbyterian Hospital.
She and her team draw patients from Bergen County, from northern New Jersey, from the tristate area, and from around the country. “It’s from referrals,” she said. “It’s word of mouth about the quality of care.” She’s gotten a lot of Jewish women from a group called the Echo Institute for Health; many rabbis refer congregants there, and Echo sends them on to her.
She finds Holy Name “culturally sensitive,” Dr. Lewin continued. “I have a lot of patients of a lot of faiths. A lot of them are Jews, because of the Echo referral network and because this is Teaneck. This is a unique environment.
“I was pleased to come to a Catholic hospital and find a Shabbat elevator,” she added.
It is particularly important for Jews to be aware of their risk of cancer. “One in 40 Askhenazim has the BRCA mutation,” she said. (Mutations in the BRCA1 or BRCA2 genes, which are so tragically common among Jews — they exist in something like one in 500 of the general population — increase the likelihood of developing breast, ovarian, or related cancers; men, like women, can get breast cancer.)
Probably, Ashkenazim are so prone to BRCA mutations because one of the things that saved the community and kept it intact — its resistance to outmarriage — meant that once there was a line of carriers who handed it down unknowingly to their children, and their children did the same, it was hard to eradicate in an age of scientific ignorance.
Even today, Ashkenazi Jews who get prenatal tests are not necessarily as okay as they think they might be, Dr. Lewin said. “The misconception that young couples have is that if they get prenatal testing and it shows that the baby doesn’t have Tay-Sachs, they’re okay.
“Those tests are only for diseases that babies and young children get. They are not genetic tests. They do not look for the BRCA gene.”
Those genetic tests are far more expensive. “They are not usually standard, although if you are Ashkenazi and you have a family history of cancer, they might be,” Dr. Lewin said. She urges everyone who can to be tested.
“It is one of my missions in life to help stamp out hereditary cancers,” she said. “If we identify them early, we would win a huge war.”
The tools to fight that war are primitive now. “If we can identify women with the mutation, if we can get them tested when they are between 25 and 30, then cancer can be detected early and treated early.”
We do not now have the technology to remove the gene, “but early detection is so important.
“Women with the BRCA mutation should have their ovaries removed when they are finished having children,” Dr. Lewin said. “That is a huge thing. We know that a lot of ovarian cancers start in the Fallopian tubes, so if women are having their ovaries removed, the tubes should go too.”
This sounds harsh — necessary, but harsh. Another part of Dr. Lewin’s job is to cushion that harshness with kindness, gentleness, and understanding.
It is hard to choose the lifesaving option from among a range of distasteful options, but it is worse not to make any choices, Dr. Lewin said. “Knowledge really is power. When you are armed with knowledge, you are armed to make decisions. I encourage people to gain knowledge and make decisions.
“If they are tested and learn that the genes are all negative, that’s great. But if they are not, they are empowered to make decisions,” she said. “Our mission is to provide high-level, accurate medical information to patients, to families, to the community, while also providing all those other aspects that make their quality of life so high.”
That’s where her mission and Sharsheret’s dovetail. “In cancer care, the medical aspect is so important, of course, but you also have to take care of the person and the family, their financial and psychological and social well-being,” Dr. Lewin said.
Statistics show that one in three women and one in two men will develop cancers in their lifetimes, she said; she stressed that that will not necessarily be a fatal development. Still, “anything that people can do to modify that risk is huge. The obesity problem is a big risk for cancer.
“Almost half of all cancers can be prevented by lifestyle change,” she continued. “A study in one of the top peer-reviewed journals showed that doing things like exercising for 150 minutes a week — that’s 30 minutes a day — by not smoking, by limiting alcohol, by having a health body weight — just commonsense things — make a difference. It really speaks to how important nutrition and weight management are. So I hope that as an ambassador for Sharsheret, I can talk not only about hereditary genetics but also about those lifestyle changes.”
Dr. Lewin thought back to a patient, a frum Orthodox woman who lived in Brooklyn. “She had a cancer, because of her lifestyle,” she said. “I explained it to her after the surgery, and she changed her life, and the last time I saw her she had dropped nearly 50 pounds. She changed the way her whole family ate.” That meant a whole new approach to the calorically laden Shabbat dinner.
It’s not all lifestyle changes, though. There is also the cutting-edge medicine, the stuff that seems like magic. “We are doing a lot of really innovative things here,” Dr. Lewin said. “Pretty incredible things for a community hospital.” In fact, pretty incredible things for any hospital.
Among those things is the hot chemotherapy bath. That’s a new procedure, barely six months past the approval stage, that takes patients with ovarian or other forms of abdominal cancer, when they are still in the operating room, their tumors just removed, their bodies still open, their senses still anesthetized, and then bathes their insides with chemotherapy. “Data show that it helps delay or even prevent cancer recurrence,” Dr. Lewin said.
Then there is a brand-new procedure that just changed the life of a 29-year-old patient who had early-stage cervical cancer. Instead of a hysterectomy, she had a “radical triachelectomy,” Dr. Lewin said. “We remove the cervix and the tissue around the cervix, but then we sew the uterus back to the woman’s vagina, so she can have children.” Pure magic.
“We are providing all the science you can get at Sloan Kettering, state-of-the-art surgery and chemo, and also the incredible team we have provides compassionate personalized care.”
Dr. Lewin also heads the Lewin Fund, started by a grateful (and anonymous) patient who willed Dr. Lewin money to use to educate patients in the fight against cancer. The fund, which has supported Sharsheret, has as its mission “Helping women with cancer and their families.” The fund will present a panel discussion at the Kaplen JCC on the Palisades on November 12. (See the box on page 25 for more information.)
Holy Name Medical Center is a Catholic institution with deep roots in the north Jersey community and an equally deep commitment to supporting the diversity that flourishes in north Jersey. The seamless way it integrates its ideals is on view this time of year in the serene garden that the hospital’s main building encloses. On a recent visit, the early autumn light, all honey gold and green, made the garden glow. A statue of its patron saint, St. Joseph, stands near one wall. Off another wall, the hospital sukkah welcomes visitors.
There are some misconceptions about Holy Name that he’d like to address and deflate, its president and CEO, Michael Maron, said.
First, “the misconception that because we are a Catholic-sponsored organization, that would affect the experience of being a patient,” he said. “Can I be comfortable at Holy Name? Will Holy Name respect my values and my faith, or will it look at me askance?
“But that is far from the truth. That is not how we define our Catholic identity. So when we can partner with a highly respected Jewish organization as we redefine the scope of health care, we want not just to partner but to embrace them.
“We want people to know that there is far more that unites us than divides us. And right now that is a particularly important message. We will not ever allow the small barbs that come with diversity to grow and divide us and keep us apart.”
What’s the other misconception? “If I have cancer, that I need to be at a large academic medical center,” Mr. Maron said. “From our perspective, treating the whole person, which means understanding the whole person, is a critical component of care. We do not believe that women who need cancer care should ever confine that to the acute episode. It is instead a lifelong relationship.”
Holy Name is a proudly local institution. Mr. Maron is proudly local as well. The hospital was founded in 1925 at the impetus of two local doctors who “decided that the Teaneck area needed its own hospital.” They reached out to the sisters of St. Joseph of Peace, which is a “canonical religious body recognized by the Vatican as being official representatives of the Catholic church.” It, too, is a local group; its headquarters are in Englewood Cliffs. When Holy Name was founded, the sisters became its nurses and administrators.
“One of the first things that the sisters did after we opened was to realize that they needed to open a school for nurses,” Mr. Maron said. “The Holy Name School of Nursing is still here on campus. It graduates about 70 nurses a year. Its students were first-generation Americans, and that legacy lives on. Today, a lot of second-career people come to us. We can train them in a two-year program, and they spend a lot more time doing clinical work at patients’ bedsides instead of didactically, in the classroom. And the school’s performance is nothing but exemplary.”
That focus on the patient — on the whole patient — is in the hospital’s DNA.
“We get no funding from the church,” Mr. Maron said. “As a faith-based organization, our drive is to care for the entire individual — the spiritual and the emotional as well as the physical — and just like our cancer specialists, we want to go beyond. We want to help people reconnect.
“When you are diagnosed, you realize that you are part of something else, and that realization unequivocally, absolutely accelerates the healing process. If you understand where people come from, and respect it, if you help people understand that their lives have a purpose — that all lives have a purpose — that can start a whole host of physical changes. People get healthier because strength comes from the realization.”
It is important to look beyond the obvious, Mr. Maron continued. Holy Name works closely with the Sinai Schools, a Bergen County-based organization that educates children with special needs, housing them in Jewish day schools and tailoring an education specifically for each child. “If you don’t look beyond the handicap, the physical, the superficial, and see that there is a person in there, and the person is screaming ‘Look at me. Don’t define me by what you see outside. Define me by what’s inside. If you don’t take the time to see me, my purpose in life will be limited.’ To me, that is the message also when you look at a patient, a woman who is fighting cancer or is beating cancer.
“It is our job to help them find the strength. Some of those children have incredible ability, and it just has to be found.
“That is why we embrace Sharsheret and the Sinai Schools. We hope that this will be the seed that will bring other organizations to knock on our door and ask, ‘How can we work with you?’
“That is why we are here. We can’t not look beyond the obvious. We can’t not see the humanity. If we succumb to the business of health care, if we ignore the humanity and the humanism in health care, then we have lost our way. Then we shouldn’t be here. We at Holy Name are strong, and it is our job to keep us strong, so we can continue to be the beacon of light that the founders of all faiths call us to be. We are part of something far bigger and more important than any of us are individually.”
Mr. Maron’s passion about his hospital’s calling has grown organically, and surprisingly. His connection to it, and to northern New Jersey, is lifelong. He was born in Holy Name and grew up in Oradell; he still lives there, “in a house around the corner from where I grew up,” he said. “In high school, I would have been voted most likely to have gone somewhere else — yet here I am.”
It’s been Holy Name that kept him here.
“I have been at Holy Name for 30 years,” he said; although certainly that is not news to him, he seems astonished by it. It wasn’t supposed to be that way. Hospital leaders never stay around that long. And they aren’t expected to feel as deeply about it as he does.
“My background is in finance,” he said. “I have an MBA from Columbia, and I came up through the financial ranks. I am supposed to be the business guy.
“But my time at Holy Name, the people I have been exposed to — and many of them are prominent in the Jewish community — have instilled in me the sense of faith and purpose, and the understanding that those of us who have the ability to lead also have the responsibility to fulfill that purpose.
“I was awakened,” he continued.
It was, among many others, Rabbi Yisrael Rothwachs and Sam Fishman and the leaders of the Sinai School; Angelica Berrie of the Berrie Foundation, and Drs. Sandra and Arnold Gold of the Gold Foundation for Humanism in Medicine who have inspired him, he said.
“This is a special place,” he said. “The staff is committed to help not for business but for compassion, for empathy for their fellow man. When you turn the lights off and go home at the end of the day, there is a sense of satisfaction that you have made a difference in people’s lives. That is more important than a pay check or the bottom line. That’s true, and it matters.”
That’s why Holy Name remains independent, he added. It has not merged with any place else.
And it also attracts world-class doctors, he said; their roster is filled with people who logically should be somewhere else. Somewhere bigger. Somewhere more on the radar. But they chose Holy Name. “They are world-class physicians, who could practice anywhere, but they have chosen to be here,” he said. “That is because they absolutely connect with the sense of purpose. And it’s also because we have created an efficient and creative and friendly place for them to practice their trade.
“We have a division of clinical research, and that is not common in a hospital of this size. Researchers at big places often can get frustrated by the bureaucracy and the slowness of large academic centers where research is thought to reside so they often look for more nimble, responsive organizations like this one.
“We want people to judge us not by our size but by our talent.”
“You realize that there are seeds of light that need to be nourished, and that even now, in these dark times, there is that light,” Mr. Maron said. “I am a firm believer that no matter how dark it gets, at the end of the day the light always will prevail.”
Elana Silber is Sharsheret’s executive director. “Sharsheret is all about enhancing the patient’s experience,” she said. “We address the psychosocial problems they struggle with. We give women an opportunity to share their experiences with other women.”
At its heart, Sharsheret gives women the chance to talk to other women who have had similar experiences. That sounds as if it should be easy — okay, you’re Jewish and in your 30s, say, and you’ve been diagnosed with breast cancer. Talk to someone else your age! But it’s not that simple.
Sharsheret has a huge and growing database that allows it to link women with a much greater degree of specificity. Each patient is different; each diagnosis is different; each woman’s needs are different. On the other hand, there is a great deal that people dealing with cancer can learn from each other. Coping skills and strategies can be tailored with great sophistication.
“Sharsheret is unique in that we have a national peer support network with more than 8,000 people,” Ms. Silber said. “Medicine today is so individualized that it is hard to find two women with exactly the same diagnosis, but with so many women in the database, we can find women of similar backgrounds and experiences and lifestyles.”
When women are faced with treatment options and must decide among them, it is immensely helpful to be able to talk to other women who already have faced similar choices and are willing to talk about the results of their decisions, she said. “We have a proprietary database that tracks this, so we can make very tailored matches, and it is all facilitated by trained social workers.”
In other words, Sharsheret combines the power of analytics with personal connections.
The links go in both directions, she said. As women’s circumstances change — if the cancer recurs, or if other life events cause them to rethink their choices — they can move from giving advice to receiving it, and then back again. The chain goes in both directions.
The peer support network is only one of the organization’s many programs, Ms. Silber said. “We have 12 programs that are available to everyone in any stage of cancer — and of life. If you have a strong family history of cancer, or a BRCA mutation, Sharsheret has a program for you. If you are newly diagnosed, or if you are a survivor diagnosed 12 years ago, we have a program for you.”
It does not help only the women who are diagnosed with cancer, but has programs aimed at her family — husband, children, parents — as well.
Among its programs are the kits it sends; physical objects, things that can help women and their families. Those kits are tailored for the recipients — women with children, say, not only get toys for their children, but get toys that are aimed exactly at children their children’s ages. Sometimes people need advice — Sharsheret also provides advice on such upsetting but absolutely necessary topics as financial planning for illness — but sometimes they need things. Sharsheret sends makeup and skin-care items too. It helps with wigs, as well as the emotional problems that come with chemotherapy’s often devastating effects on both hair and self-image.
“Everything in Sharsheret is customized,” Ms. Silber said.
Sharsheret respects confidentiality, she continued; often women who are grappling with the reality of their cancer, especially at first, do not want to do so in public. Even peer support can be anonymous. And the materials Sharsheret sends in the mail, and the materials in the kits, do not contain any recognizable branding.
Sharsheret is open to everyone. Its expertise is with the cancers that are most common in Jewish women, and with the particular challenges imposed by observant Jewish life, but it is open to anyone it can help. “Fifteen percent of the women we serve do not identify as Jews, but they turn to us because they love the one-on-one support we give,” she said. “And the other reason young women who are not Jewish come to us is genetics. If they are dealing with a hereditary cancer, they recognize our expertise.”
Sharsheret does not recommend doctors or treatments, but it can steer women toward organizations that make referrals, and the more its counselors know about treatments, the more they understand their clients.
The group’s expertise has not gone unnoticed; “We do work with the Centers for Disease Control and Prevention, and we are on the federal advisory committee on breast cancer in young women,” Ms. Silber said.
She is excited about the partnership with Holy Name. Dr. Lewin is a great asset, she said. “We have worked with Sharyn before, but now she’s on our medical advisory board,” Ms. Silber said. “We do very different things than doctors do, and the collaboration works toward a more holistic approach to the patient.
“The collaboration will provide Holy Name patients with more opportunities to participate in Sharsheret,” she continued. “They will learn about the peer support network. They will learn about the kits. And if they order a kit, that might also open up a conversation about, say, how to talk to a child in middle school.
“We will also share information on the blog. We will share and like each other’s posts on social media.” All of those techniques will use Holy Name’s reach to extend Sharsheret’s as well.
“We partner with other hospitals, but not to this extent,” Ms. Silber said. “We work with other local hospitals, but this is a more robust partnership, and a more comprehensive approach to our services.
“It can become a model of ways we can work with other hospitals.”
Sharsheret has the flexibility to grow and change constantly, Ms. Silber said. “Everything we develop is directly in response to the women we serve. We also constantly evaluate the programs to make sure that we remain current. Everything is free and confidential.
“Cancer is not a controversial issue. Everyone you know is affected by cancer somehow. Sharsheret is creating community. And it was started by women and is run by women. There is no reason why anybody would not want to support this cause, and the education that we offer. We literally are saving lives.
“We are really grateful for Holy Name’s support, because we both are in Teaneck. There are not many national organizations that are based in Teaneck, but we are, and Holy Name is local.
“When you start a national organization in a local community, that’s where you turn first, and those local institutions, like Holy Name, enable us to do great things on a national level.”
Dr. Lewin, Mr. Maron, and Ms. Silber all have high expectations for the new collaboration between Holy Name and Sharsheret, based on shared values, a shared belief in the value of the relationship between individuals and community, and a common hope for a better future.
Who: Dr. Sharyn Lewin of Holy Name Medical Center and the Lewin Fund to Fight Women’s Cancers
What: Presents a panel, “Own Your Health”
When: On Sunday, November 12, from 9:30 a.m. to 12:30 p.m.
Where: At the Kaplen JCC on the Palisades, 411 East Clinton Ave., Tenafly
Why: To talk about healthy ways to live that can help prevent cancer
How: In a talk-show-style setting; Dr. Lewin will moderate a panel featuring Dr. Jason Konner of Memorial Sloan-Kettering, Dr. Wendy Hurst, Dr. Dorothy Chae, and Debbie Besson
And also: The free morning also includes free childcare, kid-friendly activities, a photo booth, chair massages, refreshments, and giveaway.
For more information, google “Own your health” “Kaplen JCC” and “eventbrite”
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