Life, Faith, and Cancer: Jewish Journeys Through Diagnosis, Treatment, and Recovery

By Douglas

When the diagnosis of illness shatters the veneer of our normal, comfortable, predictable course of life, we are embittered and confused. "Why me?" is a question that reverberates uncontrollably in our heads. Cancer, especially, provokes such a response. With time, "Why me?" is replaced by, "What now?" Today, more and more people are surviving cancer. How do we keep going afterward? How do we maintain the connection to Judaism and God that we once had? Do we need to rethink everything we once unwaveringly believed in? This moving volume of essays written by rabbis, cantors, and other Jewish professionals who have all experienced cancer deal with these questions and many more. Their personal stories are interwoven with Jewish texts and teachings.

• Language: English
• Publisher: URJ Books and Music
• Release date: Oct 30, 2013
• ISBN: 9780807413395

Book preview

Preface

RABBI DOUGLAS J. KOHN

The phone rang early Friday morning. Doug, it looks like cancer, Dr. Gunnarsson said frankly and directly, pulling no punches. With that, my life changed.

Dr. Gunnarsson did not say, "Rabbi, it looks like cancer." She called me by my first name, beginning a new and soon-to-be compelling intimacy. Yet, I am also a rabbi, and that Friday morning I was preparing my d’var Torah, my teaching, for worship services for that Shabbat. What would I say tonight? I asked myself incredulously. And, moreover, what can I expect for the rest of my life, whatever that is?

I am at once both a rabbi and a human being, and now I was informed that growing in my neck was an alien intruder, a threatening rodeif, a pursuer of my present and my future. As a living, vulnerable human being, I was suddenly faced with a complex and confusing assault of new and foreign thoughts and feelings, and as a rabbi, I was now charged with interpreting my own life and mortality for my community, as well as for myself and for my family. I could not divorce one significant identity context from the other.

When rabbis, cantors, Jewish educators, and Jewish communal workers have cancer, a fascinating nexus appears. We must live with our diseases, yet we cannot avoid sharing them with those who look to us for meaning, teaching, and understanding. The proverbial schizophrenic intersections of simultaneously being both clergy and private individual again are breached. This breach, this opening, is both a violation and an opportunity. It is an imposition on the necessary focus and energy needed for treatment and healing, yet it is also an opportunity for the expression of Torah. Many Jewish teachers, myself included, have implored that we Jews must not only learn and do Torah, but that to be authentically whole as Jews, we are to embody and become Torah. If such is true, then it also is true that our experiences as Jewish leaders with cancer offer precious teaching and Torah moments.

For any of us, the specter of cancer may stir many concurrent levels of terror. Yes, there are other serious, chronic diseases that afflict millions of people daily: diabetes, heart disease, rheumatoid arthritis, and more. Yet, cancer, once called the Big C, has always carried its own unique cast of fears. Once it was a death sentence. Its treatments often were described as worse than the disease. It is deforming. It robs the sufferer of dignity. And the survivor, for one’s entire remaining span, carries the ignominious brand of a cancer patient, one whose bodily tissue turned against him or her. Cancer has a fundamental mystique, and terror all its own. It cannot be treated as any other malady.

When I first learned from Dr. Gunnarsson that it looks like cancer, I indulged myself a weekend of worry. It was not a restful Shabbat, that first Friday night and Saturday morning. During services, which I was supposed to conduct with joy and intent, my mind raced all about the prayers of the siddur, the Jewish prayer book, like a child in a toy store unable to stay focused. Could I lovingly extol this God whose benign world also included a life-threatening and life-absorbing organism devouring me from within? These names of congregants and friends for whom we sought God’s benevolent healing—was mine silently included? Would the Kaddish, the praise of God on behalf of the dead, be said for me, too? That Shabbat weekend, I imagined myself dying and leaving my family bereft. I cried at the vision of missing my children’s futures and not growing old with my wife. And, would treatment on my throat render me speech-impaired and unable to work as a rabbi? I indulged myself in a weekend of worry, and then I set about to learn and address this cancer within me, accepting and absorbing, while still fighting the uncertainty that engulfed me.

All the while, I could not refrain from pondering the potential that this diagnosis would undermine or end my rabbinic career. At the least, would it force me to temporarily retreat from congregational duties and from my congregants? Would I spend long periods in a hospital, recuperating, undergoing treatments, away from the Jewish community that I serve? What happens when the leader of Jews is forcibly and involuntarily taken away by some greater, mysterious, invisible force?

It happened before, over three thousand years ago.

Moses was called to the mountain and departed the dependent people whom he had shepherded into the inhospitable desert, rendering them leaderless and abandoned. Their link to the security of the Divine was severed, or so they feared. The people, vulnerable, turned elsewhere for divinity. Then, Moses reappeared (Exodus 32:19). Recrimination and punishment ensued, and a new equilibrium was restored, but both parties were changed. Both had experienced the fear of abdication and susceptibility to helplessness. Loss of Moses, even temporary loss, and the subsequent renewal offered a defining moment of identity. In the absence and the angst we were changed: we learned to be a covenantal people.

Experiencing the risk of absence and the upset of angst, changing amid unseen but terrifying forces, imposes upon us a new identity. We are different after these episodes. So, too, with cancer. Since my diagnosis, I have learned from many cancer patients a counterintuitive truth. Again and again, they repeat, We are the lucky ones. Lucky? How could it be? Is this not a grand rationalization, a subterfuge, a consolation prize self-asserted as a buttress, a sham charade to steady the shaky body, like Aaron and Hur fortifying Moses’s arms in the battle with Amalek (Exodus 17:12)? Having cancer is being lucky?

Yes. I am lucky.

The Babylonian Talmud (B’rachot 61b) recounts that when Rabbi Akiva was flayed alive by the Romans in the second century C.E., he died while reciting the Sh’ma, the central affirmation of Jewish faith. Just before he breathed his last breath, Akiva announced to his grieving disciples that he finally understood what it meant to love Adonai our God with all one’s soul. The great sage realized that this oft-repeated, yet elusive command required one to praise God even while dying. This was the final manner to love God with all of one’s soul. Akiva, at that ultimate, conflicted moment, was a lucky one. He was able to fulfill the most ambiguous and unattainable mitzvah and thus accomplish his highest purpose. He was lucky.

For the cancer patient, such luck we surely could do without. Yet, we have another, parallel measure of good fortune. As living cancer patients, we are now cancer survivors, and regarding survivors and survivorship, Jewish tradition also has experience and an interest.

The Talmud teaches that one who saves a single soul is as if one has saved the entire world (Mishnah Sanhedrin 4:5). Like Akiva, I often contemplated that text. It is inscribed in the lobby of Baltimore’s wonderful Sinai Hospital, and I had regularly pondered it when I visited patients there during my tenure as a rabbi in that city. There are many ways to save a soul: one may do so on a battlefield, in a counseling office, in a classroom, or in saving a victim from a pursuing marauder. Yet, few of us actually fulfill this injunction. Few of us have such opportunities to do so, unless, that is, one is a doctor in the domain of cancer or a patient in the same province.

I realized this teaching intimately and dramatically; cancer provided me an Akiva-esque opportunity. In an amazing and sacred partnership with my surgeon, my life was saved. I could say that we did it together: I surrendered my neck in the operating room; he opened and dissected it and extracted the unwelcome, alien intruder, the rodeif, in a six-hour surgery. Jewish law teaches that, with certain conditions, if one is being chased by a threatening robber or murderer, one may defend oneself even to the extent of killing the pursuer (Babylonian Talmud, Sanhedrin 72b). In Hebrew, a pursuer is a rodeif. Cancer was my rodeif, and my surgeon, Dr. Simental, and I defended myself by removing the pursuer that was expanding, threatening my neck and my being. Subsequent surgery, radiation treatment, and evaluations followed and continue, each renewing the Talmudic exhortation of saving this single soul and my entire world. Some other time I may learn Akiva’s lesson. Now, I am pleased with my own lessons and with my new title to accompany that of husband, father, son, and rabbi, namely, cancer survivor.

Jews, as much as Judaism itself, have a unique worldly experience with survivorship. Our history has impressed this upon us. In the matter of cancer survivorship, Jews are special, but not unique. We share this experience with a growing American population. Presently, there are more than 9 million cancer survivors alive in the United States, and more than 1.3 million people will be diagnosed with cancer this year alone. Medical developments portend well, however: 77 percent of children under age fourteen and 60 percent of adults who are diagnosed with cancer today will still be alive five years from now. Cancer is not limited to a small cohort of the populace; the Lance Armstrong Foundation projects that three out of four families in America will help care for a family member with cancer.¹ Understanding and supporting such survivorship—both the yoke and the opportunity that a cancer patient must bear for the balance of a life—is the new frontier facing America. Moreover, Jews, due to our distinct history and our ethical mission, are especially poised to contribute to this effort.

Interestingly, despite Jews serving in the medical arts and healing professions in inordinate numbers for thousands of years, and engaged in medical research as well, Jewish sacred texts reveal little mention of cancer. In Hebrew, the word for cancer is sartan, which is also the word for the crustacean, the crab. One can recognize the association: just as the crab grabs and holds its prey with its mighty pincers, so too cancer attaches and insinuates itself with its cellular tentacles and swelling tumors, threatening to devour its victim. The earliest mentioning of sartan in Jewish literature only refers to the crab, or to the summer’s starry constellation named for the crab (fascinatingly, Cancer in English, Sartan in Hebrew). The first reference to sartan as the medical disease, cancer, is by Y’hudah HaLevi, the medieval poet and physician, in his work The Kuzari. However, the greatest Jewish medieval physician, Moses Maimonides, despite writing numerous medical tractates, never mentioned cancer. It was left to the modern generation of Jewish physicians and researchers to engage this medical crustacean.

In the Book of Psalms, the poetic, liturgical text of the Bible in whose words Jews and gentiles find refuge amid ordeals and distress, God is called the Shomeir, the Guardian or Savior of Israel. Tradition and Jewish theology both recognize a conflicted aim and intent of God to save and preserve humanity. The One who nearly destroyed all life on earth by the Flood, who established a beautiful and wonderful world that also includes illness and cancer, this God also cares for every individual being. Today, I believe God has consigned the ongoing task of saving life to humanity, and we dutifully strive to fulfill it, to generate survivors and to ponder survivorship.

One who saves a single soul is as if one has saved the entire world.

When Adam and Eve ate of the fruit in the Garden of Eden, their eyes were opened and they discovered their nakedness (Genesis 3:7). Surely, they had been naked previously, but they had not known it. Similarly, we all are humanly mortal, and eventually, we all must face our lives’ journeys, our challenges, and our requisite, necessary endings. Yet, we do not know when the eyes of our souls will be opened to such eventualities. Cancer is like that fruit in the Garden. It opens our eyes. It casts us into a future of survivorship in the vast world, outside the primordial security of naiveté.

What follows in this book are writings of Jewish professionals with cancer—rabbis, cantors, Jewish educators, or Jewish communal service professionals—who have had our eyes opened. We are each facing our own mortality while serving Jewish communities. But, we are lucky ones; we are survivors who are experiencing the Talmud’s teaching. One cannot honestly be k’lei kodesh—living vessels of Jewish holiness, fully a congregational or communal leader—and have or face cancer without making deep and transforming discoveries. We are humbled. We are terrified. We love deeply, and we teach authentically. We experience our diseases through the prisms of Jewish living and Jewish teaching. The wells of our souls are deep and full, with much life-sustaining water to share.

One of the many joys in preparing this volume has been the interactions, relationships, and friendships developed and shared with the contributors. Every writer is both a cancer patient or cancer survivor and authentically a voice of Judaism, as a rabbi, cantor, educator, or Jewish communal service professional. The confluence of these dual foundations—cancer and Judaism—provides the richness of this endeavor. We have been privileged to share stories, wisdom, and counsel and at times sympathize with pains and worries as we reciprocated concerns for well-being. Each contributor is a magnificent soul, willing to reveal his or her personal narrative and discoveries with kindness, k’dushah and candor. I express my deepest gratitude to each of the contributors. They devoted much time, studied themselves and Jewish texts, and even dredged their most painful channels to write and rewrite these chapters.

This book is divided into three sections: Diagnosis, Treatment, and Recovery, with six or seven chapters and themes in each section. In each chapter, the contributors describe their own cancer experiences and explore the particular themes of their chapters using their narratives and Judaic teachings. Every writer is an authentic voice of both Judaism and the cancer experience, including Dr. M. Steven Piver, a renowned oncologist, a synagogue lay leader, and a cancer survivor himself, who offers a physician’s perspective in his foreword. In the Diagnosis section, Rabbi Sue Levi Elwell addresses discovering vulnerability as her diagnosis occurred just as she was heading to Jerusalem for a month of Jewish study. Joy Wasserman, twice diagnosed with cancer, tackles the ethical and personal issues of genetic testing, a profoundly Jewish matter, and I offer further perspectives on the classic cancer question, Why me? Also twice diagnosed with cancer, Rabbi Michael Balinsky writes of facing mortality, which has been his fate and is the fate of everyone who is told they have cancer. With his dear friends, Rabbi James and Marcia Rudin, Rabbi Hirshel Jaffe wrote a wonderful, classic book about his cancer experience and generously shares a chapter reflecting the need for support systems during this period. Completing the Diagnosis section, Rabbi Elaine Zecher helps shape the realization that one has a new reality, and a new dance, when one is diagnosed with cancer.

The Treatment section begins with a review of the Jewish obligation to seek treatment, prepared by Dr. William Cutter. Rabbi Stacia Deutsch and Harriet Levine offer the next two chapters, both courageously written while each was undergoing treatment for breast cancer. Rabbi Deutsch writes of the angst of facing treatment, its upsets and challenges, while Harriet Levine, a synagogue educator, reveals emotional and attitudinal tools for treatment: whether one owns the process or the process owns the person. Cantorial Soloist Diane Krasnick explores a spiritual dimension to the cancer treatment experience in the next chapter, while Rabbi Andrew Sklarz, who underwent experimental treatment for his cancer, sorts out the dilemma of wrestling with conventional and unconventional treatment options. The Treatment section concludes with Cantor Vicki Axe’s diary of her year of treatment, enhanced with textual teachings, and how she, and each of us, may find blessings in this perilous process.

Recovery, the final section, commences with Rebecca Meyer Carr, a Jewish communal social worker, treating the new routine that unfolds as one emerges into recovery. Rabbi Randi Musnitsky’s chapter, The Lump, the Bump, or the Swallow: Is It Cancer? addresses the worry of recurrence that ripples through every recovery, followed by Rabbi Jonathan Brown, also twice a cancer patient, who writes of living in both cancer time and Jewish time, as we measure our days. In her chapter, on being one of the lucky ones, Rabbi Myra Soifer confronts the scar that cancer left for her, and the scars it leaves for us all. Rabbi Stanley Davids describes defeating death, as for him and for too many, recovery is and was tenuous. Lastly, Rabbi Gary Zola offers an essay on cancer and the helping relationship, reflecting on the role of the rabbi as the spiritual exemplar, and Rabbi Yael Ridberg concludes the volume with a warm and wonderful window into healing, with the hope that the new may become holy.

In designing this book, I included chapters and themes that reflected a normative ontogenetic experience of the cancer patient, as culled from the experiences and narratives of a cross-section of cancer survivors, including myself. Themes and chapters were adjusted, added, and redesigned following the valuable suggestions and advice of many, including most importantly the nineteen contributors who joined me in writing this volume. And, there surely are themes that are not included and that are and will be the next concerns of cancer patients: robotic surgery, genetic treatment, transplant advances, hormone therapies, genetic mapping, proton therapy, and more. Perhaps someday another volume will complete what this volume leaves incomplete.

I gratefully acknowledge the unwavering support and enthusiasm of Rabbi Hara Person, editor-in-chief of the URJ Press, for her encouragement and vision for this project. She never faltered in her support, from the initial concept through the proposal to the writing and rewriting, and her editorial sensitivity and judgment were always right on target. No less, the wonderful team at URJ Press helped in every dimension and demonstrated talent and professionalism from start to finish. As well, I extend my gratitude to the lay leaders, staff, and members of Congregation Emanu El in San Bernardino, who took pride and interest in this endeavor and who propped my arms when they would sag. Many colleagues and friends offered suggestions and words of advice, including Cantors Barbara Ostfeld, Richard Cohn, Ellen Dreskin, and Benjie Ellen Schiller; Rabbis Ira Youdovin, Mark Diamond, Bill Cutter, Eric Weiss, David Lipper, and Debbie Mangan; Melanie Goldish, of SuperSibs!, a program for siblings of children with cancer; and geneticist Dr. Bradley Hyman, of University of California, Riverside, who reviewed certain sections for scientific accuracy. I thank graphic designers Danny Blumenthal, himself a cancer survivor, and Karen Pasternack Straus for their design creativity in helping fashion this volume. Lastly, I thank my wife, Reva, and our children, Benjamin and Elena, who surrendered me to this project. Their forbearance and their encouragement were the greatest help—both when I was at the keyboard for ungodly hours and when I was in the hospital—and they have my deepest thanks.

Even as we appreciate saving each single soul, we are saddened and reflective in remembering colleagues in our Jewish professions who lost their battles with cancer. There are many who contended valiantly, yet whose lives succumbed to the crustacean’s grip. For some, their illnesses came before advances in medicine could buy them time; for others, their cancers were insidious and untreatable. Accidents of fate—genetics, behavior, or environment—robbed us of them too soon, yet their legacies in their cancer struggles inspired some of the contributors to this volume. As our voices find expression on these pages, we remember those who were silenced: Zichram tzaddikim livrachah—May the memories of the righteous abide as a blessing.

In all, these writings are candid and compelling teachings of living fully, even while, and after, being ill. They reveal the supporter being supported and the teacher being taught. They reveal the fullest authenticity of the Jewish leader and the person, together in one, denuded before the congregation or the community. They reveal the covenantal relationship, ever since Sinai, of the Jewish leader and the Jewish community, entwined, symbiotic. They teach us to lift up one another and to allow us to be lifted, like the arms of Moses. They teach us to hear the divine voice and to see the divine visage in each human being, in each of us who stood together at Sinai and who yet stand, even if supported or with an IV bag, at the foot of the mountain.

PART I

Diagnosis: So, You’ve Got Cancer

  1  

Discovering Vulnerability

RABBI SUE LEVI ELWELL

My brother John was born when I was eighteen months old, so he is a part of my earliest memories. We had two years together, just the two of us, before our first sister was born. And then our second sister, and then our brother. We were the oldest, a mismatched pair who sat together on the school bus, and for years, after we had been tucked into bed, we crept into each other’s rooms to talk, often falling asleep on the end of the other’s bed. As the years passed, I watched out for him, a boy who devoured books and gallons of ice cream, a boy whose body grew before his sensibilities could catch up, a deeply sensitive and creative soul whose raw energy often frightened his younger siblings, his parents, and frequently, himself.

When John realized, after a couple of weeks of classes, that he had made a disastrous college choice, he hitchhiked the 320 miles between our two campuses, and we spent days strategizing how he could begin again in a place where he would find people more like himself: hungry for intellectual controversy, music, and film, eager to deconstruct ideas, challenge the status quo, dream a better, more just, more equitable world. He found a more suitable college, went to Woodstock, then law school, joined VISTA (Volunteers in Service to America), and went to Alaska to work for Legal Aid. Finally, he moved to New York to become a playwright. At six foot four, my brother John was larger than life: he had a phenomenal mind, an expansive spirit, and a gift for making and keeping a rich and diverse collection of friends.

In June 1986, my family traveled to Cincinnati from their various homes across the United States to celebrate my rabbinic ordination. Despite the warm weather, John had a persistent and troublesome cough. Two months later, he finally went to his primary care physician, who ordered a chest x-ray, which revealed an enormous mass in John’s capacious chest. A subsequent biopsy revealed that John had a rare cancerous tumor. Ten months later, my thirty-seven-year-old brother was dead.

Over the course of the first year of my rabbinate, I watched my large, strong, charming, and brilliant brother fight and eventually lose a mortal battle with a cancer that devoured his body and fully depleted his physical resources. Over the last days of his life, our parents and siblings took turns sitting at his side, reading to him, conversing when he had the strength, sitting silently with him as he slept or dozed. We held his paper-thin hands in ours. We watched a formerly powerful man become a shell, even as we had the privilege of accompanying John’s strong spirit through what became his final days on earth.

Among many Talmudic stories about the Rabbis and their own travails is one that stands out. It explains the enormity of Rabbi Y’hudah HaNasi’s sufferings and his equanimity in accepting their arrivals and their subsequent departures. The story begins with quoting Rabbi, who completed the compilation of the Mishnah in the second century c.e. The Talmud teaches that he responded to his pain by stating, How beloved is suffering! The Talmud goes on to relate that this sage accepted thirteen years of suffering, which eventually came to an end. The suffering began when a calf that was being led to slaughter hid its head in the folds of Rabbi’s garment and bleated to protest its fate. Rabbi replied, Go, because for this you were created! The angels heard the rabbi’s seemingly callous response and said to the Holy One, Since he shows no mercy, let suffering come to him.

Thirteen years later, Rabbi’s maidservant, who, like several other women of agency in the Talmudic text, is never named, was sweeping the house when she came across a litter of newborn weasels and was about to cast them out. The rabbi interrupted her with the words, Let them be, for it is written, [God’s] mercy is upon all [God’s] creatures. The angels, hearing this, responded, Since Rabbi shows mercy to these most vulnerable of creatures, let us show mercy to him. And his years of suffering came to an end (Babylonian Talmud, Bava M’tzia 85a).

Each of us is vulnerable, from the learned individual to the calf, from the least of the residents of our homes to the master and the mistress of the house. The Talmudic text teaches that the Holy One and God’s ministering angels dispense both judgment and mercy. As we read this text, we may be reminded of the folk song Dona, Dona, which introduces a calf who cries on the way to slaughter. It is challenged by the farmer, Who told you a calf to be? echoing Rabbi’s response to the hapless animal who sought refuge from his fate in the rabbi’s cloak.¹ All of God’s creatures are vulnerable. The only question is how and when our vulnerabilities become visible or manifest in our lives, and how we respond to them.

Exactly eighteen years after my brother’s death, my partner Nurit said, I’m worried about the lump in your neck. I think it’s growing. I had noticed the lump months before. I told myself it was my Adam’s apple, but women don’t have Adam’s apples! Yet my neck did not hurt, and I had had two physical examinations six weeks apart, just a couple of months earlier, and my doctor had not noticed anything awry. But that morning in June, I listened to Nurit, ended my denial, and telephoned my primary care physician. The next day, when I sat in her office, she expressed concern about possible thyroid cancer. I was concerned, too, not only about what the ultrasound that she ordered might reveal, but because in ten days I was planning to travel to Israel for a month of study. I could not imagine that anything could interfere with, or change, my intention to return to the Shalom Hartman Institute in Jerusalem, where I was a Fellow in the Rabbinic Leadership Institute. My physician was clear: if this lump was cancerous, I would need to cancel my trip.

I spent the next ten days on the Internet learning about thyroid cancer, speaking to friends and associates who are medical professionals, and shuttling between my doctor’s office and the hospital. In between appointments, I spent three days at the University of Pittsburgh Medical Center (UPMC) supervising a service-learning program that I had developed to introduce teens to Jewish values of health and healing. As rabbis, we often take on many roles simultaneously. That week, as I waited for my diagnosis, I was both teacher and student as I walked the halls and wards of UPMC, listening and learning the world of the hospital with an awareness sharpened by my newfound sense of vulnerability. Together with my students, we studied how Rabbi Yochanan challenged Rabbi Chiyya in the Talmud, Are your sufferings welcome to you? and Rabbi Chiyya responded, Neither they nor their reward (Babylonian Talmud, B’rachot 5a). The texts were more alive for me than they had ever been.

Responding to my desire and need to complete the process of diagnosis before my planned departure, my physician arranged both an ultrasound and subsequently a fine-needle biopsy in record time. My papillary thyroid cancer was diagnosed the day before I was to leave for Israel, which also happened to be the Friday before the three-day Fourth of July holiday weekend. After sharing my diagnosis with several trusted medical professionals, including friends and family members, and knowing that it might take up to a month to speak with a surgeon to schedule surgery, I decided to travel to Jerusalem, as planned.

A Jew traveling to Jerusalem is always making a return trip. Each of us has been there before, if not in our own lives, then in history and