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Tag : breast cancer

January 16, 2020 by

Across the Barrier

Across the Barrier

 

 

 

 

 

 

 

 

 

 

 

Glorious blue skies stretched over Ruppin Street as I drove to the white brick building of the American Jewish Joint Distribution Committee, adjacent to the Givat Ram campus of the Hebrew University of Jerusalem. My chest prickled, seared skin healing from the radiation to my breast and across my chest to catch any remaining cancer cells left behind after my lumpectomy three months prior. I smelled like burn. Or did it just feel like I did? I had been spared chemotherapy, which felt like God the Woman acceding to my personal entreaty for a pass. She must have noticed that my hands, head and heart were carrying three small sons under five, including a baby I’d speed-weaned days after my diagnosis. The Mediterranean sun poured light onto the streets, the lush lawns, the nearby museums and government complex. Everything sparkled.

Except me. On the path to learning to live again, I was struggling, even stumbling. During the blurred weeks of surgery and radiation, what I’d thought of as my raw vitality and bounce had all but disappeared. I’d always exuded positivity. No more. Happiness felt like a distant country. What was the trick to getting the lilt back in my step? Was there a handbook on how to survive surviving?

That clear luminous Wednesday in March was one of my very first days as a breast cancer “survivor,” and even that label befuddled me. Was “survivor” the right term for a disease that could always recur, however unlikely? Trying to ward off a recurrence, I had signed up for countless support groups at the local center for breast cancer survivors, as if attending more would scare away the malignant cells and translate into more years added on to my life expectancy. I had put my name down for the English-speaking support group, the Hebrew-speaking support group, the couples support group, guided imagery, dance therapy, psychodrama, even belly dancing.

And that afternoon, I was trying something else. The Cope Forum brought together Israeli and Palestinian breast cancer survivors for support and exchange. It was started in 2000 by the JDC’s Middle East program, in partnership with Patient’s Friends Society, a Palestinian NGO, and the Israel Cancer Association. Conveniently, the Cope Forum met in a Jewish part of Jerusalem I knew well. I drove down the streets to the meeting with self-assured familiarity, relieved that I did not need to consider navigating an unknown Palestinian neighborhood in East Jerusalem.

Whiff. I blew cool air into my t-shirt, relieving my charred skin and knotted nerves.

I entered the building from a side entrance, and a security guard motioned me to a closed-door conference room. When I pulled open the heavy door to the nondescript room with its sepia-tinted photos of Jewish leaders, my jaw dropped.

Oh my! There are so many hijabi women in this room! Some 20 women with headscarves, clad in flowing caftans in vibrant blues, browns and maroons, holding paper cups of steaming instant coffee as they chitchatted in Arabic.

Muslim Palestinian women dressed in hijabs and abayas had filled my field of vision over the 20 years I had walked Jerusalem’s streets. But I had never been in a room with so many of them! Not at the Malcha shopping mall. Not at the Beit Sahour Israeli-Palestinian majority male dialogue group I’d attended for a few years.

Mind buzzing, my widened eyes didn’t know where to land. Ten Jewish Israeli breast cancer survivors— identifiable by their clothing (soft cotton shirts and casual pants or jeans, garb similar to what I was wearing)—were talking with Palestinian breast cancer survivors, and the room hummed with women whose body language radiated self-assurance. They carried their curves and scars with confidence and poise, as if their bodies had recorded disease and moved on. While I scrambled to recover a self stolen by cancer, these women had faces alight with vitality. I would later learn that they were all much further along in life-after-breast cancer, with diagnoses and treatment courses that had faded into memory. I wanted in on the secret they’d unlocked to surviving, forging ahead, undefeated.

My shoulders settled. Who were these women, and where were they from? East Jerusalem? Or the West Bank? My mind wandered, considering the differences in language, dress, and faith. These musings were luring me out of the stagnating loop in which I’d gotten stuck after cancer. It was a welcome diversion from my obsession with recurrence-menopause-hot flashes-dying young. At long last, I was distracted from myself.

While a facilitator introduced us to Qigong, a Chinese form of meditation and breathing, I stole glances at some Palestinian women standing next to me. My eyes landed on one in particular. Her heartshaped face was wrapped in a royal blue hijab, and there was kindness in her eyes. Her good spirits were matched by a playful grin.

As the facilitator led us through a warm up, swinging our arms side to side, the smiley woman quipped and cracked jokes under her breath in melodious Arabic, sending Palestinian women to her left and right into peals of laughter. She nodded in my direction, lips turning ever so slightly.

“Hey there,” she said to me in English. “I’m Ibtisam. Nice to meet you!”

“Same,” I smiled back. “I’m Ruth.”

To an outsider, both sides of the Israeli-Palestinian conflict intermingled in that room. But there was actually no conflict at all. We weren’t talking politics. The only apparent adversary was the cancer we were all battling.

After the Qigong activity, all the women socialized. Swapping stories in Arabic, Hebrew and even some English. Laughter that sounded throaty, strong, real. “Tfaddali.” Help yourself. Someone offered me a huge grin and a generous slice of homemade baklawa, leaving my fingers sticky.

In the corner, I balanced the pastry and arched my shoulders, adjusting the stretched white bra atop my prickly pink skin. It was a nursing bra. Apparently I hadn’t let go of my nursing self, even though the milk was long gone. Forever gone. Or perhaps it was myself I wasn’t done nursing?

But these women were past that. And their open smiles suggested that they had enough bandwidth to prop me up, too. In time, I would learn more about the challenges of Palestinian breast cancer journeys. The loneliness and isolation in their respective communities, the stigma of cancer, the concern about becoming a social pariah if they shared their medical history with others, the difficulty of traveling through checkpoints for treatment. And that one particular hijabi woman who stole laughter and merriment from wherever it could be found, Ibtisam Erekat of Abu Dis, would become like a sister to me, one of my dearest friends. Which she has remained to this day, nearly nine years later.

Two women scooted over to the side and unrolled prayer rugs. It was time for Salat al-zhur, the early afternoon prayer. After exchanging a few quiet words, they positioned themselves in the direction of Qiblah, in the direction of the Kaaba in Mecca. “Allahu Akbar.” As they prostrated their bodies, I thought to myself, Pray for me, too.

Suddenly it became clear. A door was opening. To other things, beyond this conference room, beyond the immutability of the Israeli-Palestinian divide, beyond disease. For once, cancer was expanding my world. In the easy togetherness, I felt solace, a blueprint of what could be. In that room, cancer was not only a disease; it was also the tie that binds.

I could have never imagined then that Ibtisam—a devout Palestinian Muslim who lived on the other side of the Separation Barrier—would become my person in Breastcancerland. That bit by bit, intimacy and kinship would be woven between us, transcending the divide. That in the nine years since that first meeting of the support groups she would become the one to nurture my hopes and caress my fears. Ibtisam would model for me how to “survive” breast cancer with humor and grace, and I’d also become her go-to person, the first friend she would call when her stepdaughter got engaged and the one to whom she cried when her mom passed away. I could not have known then that our friendship would weather the tension, complexity and storms of war, that we would serve as each other’s support system when violence reigned and blood was shed. During Operation Protective Edge, the Israel-Gaza war of 2014, when rockets rained down on Israel and airstrikes pounded Gaza, Ibtisam was often the first friend of mine to call to see how I was doing when sirens hit Jerusalem. And I rushed to call her when the news reported crossfire between soldiers and stone throwers in her hometown of Abu Dis.

In that first meeting, I caught a glimpse. Cancer wasn’t only going to close doors. It also had the power to open them. A disease which had felt to me like an end could actually be a sort of beginning.

Ruth Ebenstein is a writer, a historian, public speaker and peace activist. Her forthcoming memoir is Bosom Buddies: How Breast Cancer Fostered an Unexpected Friendship Across the Israeli-Palestinian Divide.

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January 16, 2020 by

Mythic Under the Radiation’s Red Eye

Under Radiation's Red Eye

 

 

 

 

 

 

 

 

 

 

 

 

 

Before they aim the radiation at your breast, they put tattoos on you. This seemed like a big deal to the doctors, so maybe they’d already met a lot of hysterical women just done with getting their tumors cut out, who lost their cool over the tattoo stage. At any rate, everyone with a lab coat kept saying “The tats are just the size of freckles. No big deal.” And looking sideways to see whether I agreed.

What the heck. So much already happened, from quirky mammogram (“don’t you want a piece of fruit?” the nice pink-smocked volunteer kept asking) to long-needled biopsy (“yes, it’s cancer, I knew as soon as the needle hit it”: pathologist), to the fast-track “day surgery” to cut out the crumb of malignant cells. I didn’t witness that part, they knocked me out and I woke up with neat little white bandages taped in place and miniature ice packs like frozen round ravioli fastened over each wound (two; one on the left breast of course, one under my arm to snag a couple of suspicious lymph nodes—I wondered whether they wore their hats pulled down over their eyes, or just ski masks).

Anyway, there I was, staggering out of recovery and very undisturbed because those surgery drugs include long-term (like, two or three days) painkillers and some happy juice as well. And the kids—well, they are 40 and a bit, but today that’s still the kids— say proudly, as they drive me home, “The surgeon says you don’t have cancer any more, it’s all gone.”

Which makes it pretty strange that all these doctors and nurses and social workers elbowed me directly into six weeks of every-weekday radiation. “It’s routine; it’s necessary; you won’t mind, it’s easy.” And then the tattoos. (But you said the cancer was gone. Oh. Metastasis, that’s, like, a Greek word, right?)

Maybe you don’t have Jewish in your family. I only have a half dose of it myself. But that’s enough to know tattoos as control items, blue smudged numerals in a line down the soft skin of the forearm. Rebellious Jews indulge in tats; history huggers abstain. Me, the image of a sagging “tree of life” drooping down my aging derriere kept me away from tattoo parlors. HIV threats, too, with each possible needle prick. So, long story short, these “freckle” tattoos are my first. I’m a virgin. Bite me.

Wouldn’t you think a freckle would be maybe reddish brown, or mahogany toned? Let’s blend in a little. Ooops, guess the point (for the radiation technicians) is, make it stand out. “Here comes a little pinch.” Four times over, north east south west of the pothole in the terrain where a nodule of menace used to sit and doesn’t any longer. Check the mirror while changing back from the ironed cotton “gown” to street clothes, and: Green. I ask you, what is the point of a first tattoo that’s four green dots? I’m not oriented.

Next morning, the techs are all happy. “You have your tattoos! Lie back, close your eyes, put your arms up over your head and grip the wooden handles. We’re going to line you up and aim the radiation! When the red light goes on, it’s firing into you.” No, they didn’t really say “firing into me.” But they meant it. I got it. Just in case I missed it, though, I felt one of them drop a rubber ring over my feet to bind them together. No wiggling under the x-ray beam. “When you’re ready, take a deep breath and hold it.”

Recap: Lying under a flame thrower’s narrow beam. Tattooed with target markers. Back arched, knees slightly bent, arms and feet in place for sacrifice. Is there a blade? Nope, just the red light— my eyes are closed, determined to space out instead of paying attention, but I can smell sharp acrid terror from my underarms and see the roasted red pepper color of that hazard light through my eyelids. “Now breathe normally.” Normally? Who remembers normal like this?

If I’m Andromeda bound on the cliff and Perseus is coming in time to stop the monster from devouring me, I wish he’d get a move on. The technicians aren’t expecting him though. Each time the buzzer sounds, the radiation slices through me again. Remember to put salve on both your front and back, they repeat: The exit wound is on your back. We’re burning you.

Did I mention I’m the second writer this year on this steel table, under the hot red sun? The other one’s already dead from his cancer (not breast but lung, black stain of cigarette tar, was it worth it for his novels? I’m thinking he got them published, but no Pulitzer, no world tour or major film contract). The techs love writers. Wow, this autographed stack (small) of my novels, “Cancer Center Copy” inked on each title page. No, not tattooed. Not signed, either—if I die, a signed copy is worth more. I’m not providing the incentive for a grim ending.

Anyway, Perseus must have flown off someplace else. “You can put your arms down now.” Here’s an extra tube of salve, the burns are going to blister and itch. What would you agree to do, for five more years of writing time? How about for ten? Do you need two hands to type? This could affect your arm muscles. If the radiation energy gets turned up, you’re in the “boost” part of treatment. Graduating from Andromeda to Hera maybe. Or Joan of Arc. Light my fire, burn me again. “Take a deep breath and hold it.” Just the right amount of air to lift the tumor “bed” away from the heart. It’s going to cook the heart muscles just a little bit, and the lung too, but don’t worry, you’ll be fine. Don’t worry? Are you crazy??

Week five, and swallowing is no longer a piece of cake. Some of the flaming arrows are toasting my throat, which is fighting back, swelling and sore. “You may lose your voice,” the nurse offers in sympathy. No problem: even voiceless, the tattoos whisper to the techs where to aim. By camera. The techs, of course, shelter behind a lead and concrete wall. Ready, set, action. The buzzer again, the red eye of the machine. Even with eyes closed, I feel the massive monster turn around, rise, change direction, its face toward mine, lips open: a whisper of warm air across my breasts. “A little deeper breath. Good. Hold it.”

Back on my feet, sock-tiptoeing to the changing room. A man waiting his turn. Breast for him too? Long red wound on his neck, “how are you,” a croak in reply. The tech arrives to lead him to the fire and asks how he feels. Whatever signal hides in his croak, she’s okay with it, chirps empathetically, “That’s how it’s supposed to feel, you’re doing fine.” Drive home? Impossible to explain to husband, he’s already terrified, can’t bear to look at the scars. Not my Perseus at all, but maybe the Great Bear aka Big Dipper, lumbering along beside me. Growling now and then. In Greek. Sure.

Online support team, details of how to ice and salve and keep going. You know the Internet monitors your conversation, right? An email arrives from an aid agency, photo like the man in the waiting room but with more bandages. “English teacher on this island can’t speak—tumor out, radiation needed, but no machines here. Give five dollars.”

I give ten. And again. It’s money on the altar. What next? Maybe I should find some lamb’s blood or incense. One in eight women takes this path. No wonder the dust, from their feet. Their feet, about to be bound on a steel table.

Those four green tattooed dots. Constellation. The Pleiades, the Seven Sisters. Now I own my piece of the night. I’m burning.

Beth Kanell lives in northeastern Vermont, with a mountain at her back and a river at her feet. She writes poems, hikes the back roads and mountains, and digs into Vermont history to frame her “historyhinged” novels.

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January 16, 2020 by

The Other Jewish Women’s Cancer

COURTESY OF THE ARTIST AND FRANÇOIS GHEBALY GALLERY, LOS ANGELES

COURTESY OF ARTIST, KATHLEEN RYAN AND THE FRANÇOIS GHEBALY GALLERY, LOS ANGELES

 

 

 

 

 

 

 

 

 

 

 

 

In September 2017, I get a call from my mother. “I have some bad news,” she begins.

I think, Dad had a stroke. He has Alzheimers. Mom has Alzheimers. (This is my worst nightmare). “I have ovarian cancer,” she says.

I know enough to understand that this is very bad news. Ovarian cancer is the deadliest gynecological cancer, affecting more than 22,500 women in the U.S. this year alone, and killing close to 14,000. It is caused by the proliferation of cancerous cells inside, on, or near the ovaries, the female reproductive organs on either side of the uterus.

My mother is 77. She walks 10,000 steps at her local nature reserve every morning. She doesn’t drink, smoke, or eat junk food, and she loves salmon. She recently replaced spin class with yoga, and is proud of the fact that her doctor told her she has the bones of a woman half her age. My mother is a formidable bridge player, an excellent driver, and she reads two or three books a week. Her worst habit is binge-watching cable television shows in which people shop for wedding dresses and houses.

She was the first person in her immediate family to go to college, a psychotherapist, and later, the director of the non-profit outpatient mental health clinic she worked at for 40 years. As a parent, she is unsentimental to a fault, but she’s a doting grandmother. She is the most competent and even-tempered person I know—the grownup I aspire to be, only with fewer Eileen Fisher separates. She is also loyal, having maintained the same haircut since 1975, and the same husband since 1968.

We have no family history of ovarian cancer, though my mother’s sister (a former smoker) is a breast cancer survivor.

My mother explains to me that the stomach problems she’s been having for the past few weeks are actually symptoms of ovarian cancer, and that she’ll be having debulking surgery to remove the tumors, as well as her ovaries, fallopian tubes, and uterus in two weeks. My mother doesn’t cry when she tells me this.

I struggle to mirror her stoicism. When I call my sister and tell her that mom has declined my offer to fly to Florida for the surgery, she is quiet for a minute. “I think we should go,” she says.

SURGERY

The morning of the surgery I accompany my parents to the hospital. After my mom is wheeled away, my father and I sit in the waiting room and periodically check the electronic board that updates us on patients’ progress. My mother is in pre-op for a long time, and in the operating room for even longer. At last her surgeon appears.

When he says, “Unfortunately, the cancer has spread farther than we thought,” I realize his slumped shoulders and sympathetic expression are deliberate; he’s been warning us of bad news since he walked through the door.

“Can you give us a preliminary staging?” I don’t think he will answer.

“Stage IIIC,” he sighs.

“Oh, Christ,” I whisper, not very Jewishly.

This is why ovarian cancer is so dangerous, with a five-year survival rate of just 47 percent: the vast majority of cases are diagnosed after the cancer has begun to spread—and it spreads quickly, according to Susan Domchek, MD. She is the executive director of the Basser Center for BRCA and the Basser Professor in Oncology at University of Pennsylvania’s Abramson Cancer Center.

Diagnoses tend to be delayed for several reasons. First of all, symptoms—like bloating, abdominal pain, loss of appetite, back pain, fatigue, and constipation—may be ignored, or attributed to other, more common conditions.

And not everyone has any warning signs: Amy Marcus Hollub, 55, a real estate professional in Miami, had “no symptoms at all,” when she was diagnosed with ovarian cancer in 2009. “That’s the scariest part.”

In addition, while commonly used screening tools—ultrasounds, blood tests, and MRIs—can help identify some cancers before they’re advanced, “There is no good way to detect early stage ovarian cancer,” Dr. Domchek notes. By the time a pelvic ultrasound identified a mass on Hollub’s ovary (which couldn’t be confirmed as malignant until surgery), she had Stage IIIC ovarian cancer.

GENE TESTING

After the surgery, my mother is tested for cancer-causing mutations (changes) in 28 different genes. Mutations in the genes known as BRCA 1 and BRCA 2 account for much of the inherited risk of ovarian and breast cancer. They’re found in 1 in 40 Ashkenazi Jews, compared to about 1 in 300 in the general population. Among Sephardic populations, the prevalence of BRCA mutations is likely higher than in the general population, but lower than it is among the Ashkenazim, according to board-certified and licensed genetic counselor Peggy Cottrell. Cottrell works at Sharsheret, a non-profit organization primarily serving Jewish women at increased risk of breast or ovarian cancer.

While ovarian cancer affects just 1.3 percent of all women, 44 percent of BRCA 1 and 17 percent of BRCA 2 mutation carriers will develop the disease by age 80. In fact, 29–41 percent of ovarian cancers in Ashkenazi women are thought to be the result of BRCA mutations.

“All ovarian cancer patients should be tested for BRCA 1 and BRCA 2 mutations,” Dr. Domchek says. (Most BRCA mutation carriers in this country have not been identified, according to Cottrell.) Dr. Domchek explains, “BRCA 1 and 2 are the most important as there are specific therapies which will be given based on a positive result.” After her diagnosis, Hollub discovered she has a BRCA 1 mutation.

Because several genes are associated with an increased risk of cancer in Ashkenazi Jewish women, when Cottrell does recommend genetic testing, she generally advises a multigene panel. Dr. Domchek includes the genes BRIP, RAD51C, RAD51D, Lynch syndrome genes, PALB2, ATM, and BARD as candidates for analyses.

THE PRICE OF PREVENTION

For BRCA 1 or BRCA 2 mutation carriers, prophylactic salpingo-oophorectomy (preventative removal of the ovaries and fallopian tubes) is recommended, as this can lower the risk of ovarian cancer by 80-90 percent. Dr. Domchek advises mutation carriers to have this surgery by age 40 (BRCA 1) or 45 (BRCA 2). Some BRCA mutation-positive women have their uteruses removed too, since the mutations may raise the risk of a rare, aggressive uterine cancer.

While the surgery has obvious benefits, it’s not without drawbacks: The procedure induces menopause, raises the risk of osteoporosis and heart disease, and may boost patients’ odds of developing dementia. It’s not clear just how many BRCA mutation carriers have their ovaries and fallopian tubes removed, but in Dr. Domchek’s experience, “most individuals do this by age 50.”

Janet Levinson, 49, had her ovaries and fallopian tubes removed in 2014, and a double mastectomy in 2017. She discovered she had a BRCA 1 mutation after her sister was diagnosed with ovarian cancer in 2013. While the decision to have surgery was “almost a no brainer” for Levinson, in part because autoimmune issues meant she wouldn’t be able to have chemo if she did develop cancer, she wishes she’d known about fertility-preserving options like egg- and embryo freezing prior to having her ovaries removed.

Levinson confesses, “I feel like I cheated what life might have had in store for me,” namely, cancer. In addition, “I have felt guilty that I was in and out of the hospital so much, taking up the doctors’ time, getting surgeries—I never had cancer!” But, “When you have time bombs in your body, what are you going to do?”

If my mother is positive for any of the gene mutations she’s been tested for, my sister and I should get tested. However, if my sister or I are positive, while we can’t be denied medical coverage, we could be refused, or charged more for, disability, long-term care, and/or life insurance policies.

Moreover, “Even if you have genetic testing without using your medical insurance, you need to tell the truth on your policy application if they ask,” Cottrell warns. “Lying on your application may risk the loss of your policy.” For this reason, “It may be a good idea to get your insurance in place before you have genetic testing done.”

Still, “genetic testing may provide you and your family members with the information you need to save lives. Don’t allow fear of insurance discrimination to prevent you from getting the medical care you need.”

RESULTS

As it turns out, my mother doesn’t have any inherited gene mutations, at least none of the ones the tests checked for. I am strangely disappointed: If she doesn’t have an inherited gene mutation, then what caused my mother’s cancer? We are creatures of narrative, and explanations help us accept, or at least understand, the strange and implausible facts of our lives. But between the lack of hereditary risk and my mother’s aggressively healthy lifestyle, it seems that her cancer is one of the “66 percent of cancer mutations result[ing] from [DNA] copying errors,” or random bad luck, according to researchers at Johns Hopkins University. I find this infuriating.

And just because my mother doesn’t have these mutations doesn’t mean my sister and I don’t—our Ashkenazi father could be a carrier. Both men and women can inherit and pass on BRCA mutations, and if one parent has a mutation, there’s a 50 percent chance of a child inheriting it.

Unfortunately, not everyone knows that either parent can pass on a higher risk of breast and ovarian cancer. In Hollub’s case, two different obstetrician-gynecologists were confident that her grandmother’s and aunt’s early deaths from ovarian cancer shouldn’t concern her, since the affected relatives were on her father’s side. Hollub didn’t learn she had a BRCA 1 mutation until after her diagnosis.

Regardless, “A negative result [for a BRCA mutation] doesn’t mean you’re in the clear,” Dr. Domchek warns. “If you have a family history, you still need surveillance,” and should maintain a healthy lifestyle. Great, I think.

CHEMOTHERAPY

In December 2017 my mom has the first of six scheduled chemotherapy sessions. For Stage III ovarian cancer patients with tumors no larger than 1 cm. after surgery, chemo delivered directly to the abdomen (intraperitoneal chemotherapy) may lead to better results. My mother’s oncologist doesn’t recommend this treatment. Is that because he “doesn’t think there’s evidence that it’s effective in patients over 65,” as he tells her, or because she still has some tumors larger than 1 cm., or both? Either way, my mother refuses to get a second opinion. As my father regularly informs me, her oncologist is a graduate of Columbia University’s Vagelos College of Physicians and Surgeons, and, I gather, infallible.

Hollub, who was advised to have (and received) both IV and peritoneal chemo after having her uterus, ovaries, and fallopian tubes removed, is glad she got a second opinion before starting treatment. (She eventually had two rounds of chemo and a prophylactic double mastectomy.) “It gave me more confidence in my decision. I wish women would appreciate that it’s OK to ask questions, and get second opinions. … If you can’t be your own advocate, get someone to be an advocate for you, even if your doctor is the best!”

ASSESSMENT AND FURTHER TREATMENT

In Spring 2018, my mother finishes her sixsession chemo cycle, and is evaluated for evidence of disease. “We’re going to beat this,” my father announces. Statistics offer (limited) support for his declaration: Remission is common after the first round of chemo, though in most cases disease eventually recurs.

Janet Levinson’s sister, Ruth Ann Ornstein, 53, has had two recurrences of ovarian cancer since her original diagnosis of Stage IIC ovarian cancer in August 2013. During each bout, she’s undergone surgery and chemo. She’s currently on an oral drug, Lynparza (olaparib), which is what’s known as a PARP inhibitor. After chemo, PARP inhibitors can slow or halt disease progression in some ovarian cancer patients, including BRCA mutation carriers. As a person with recurrent ovarian cancer, Ornstein says, “I know my journey will never be over.”

But my mother is not in remission. Although some of her tumors have shrunk, she needs further treatment. Unfortunately, she has developed anemia, with too-low levels of hemoglobin in her red blood cells. This is a common side effect of cancer treatment, but in my mother’s case, the anemia is so severe that she can’t tolerate more chemo. Eventually, after several months of iron pills, inconclusive tests, and unplanned hospital visits, my mother has a bowel resection and comes home with a permanent souvenir, a colostomy bag.

A NEW APPROACH

At the end of the summer, the oncologist puts my mother on the PARP inhibitor olaparib. He lowers the dose several times, until her hemoglobin levels stabilize.

Over the next few months, my mother struggles to get, and keep, her hemoglobin levels up. Despite multiple blood transfusions, sometimes she can’t take the olaparib. She uses a wheeled walker to get around, and sleeps more and more. Her oncologist suspects microscopic blood loss, but even a nuclear medicine GI bleeding scan in early 2019 can’t find the source. During this scan, my parents learn that the cancer has reached her stomach. “But the oncologist doesn’t seem concerned,” my dad reports. “He said, ‘We already knew that.’”

I am horrified. “I get the feeling that mom doesn’t want to know any details about the cancer,” I say, carefully. I am wild to know what’s happening, as if by having more information I will be able to prevent the worst, or at least prepare for it.

“Me neither,” my dad says cheerfully.

THE END

One evening in early April 2019, my mother calls me. “Do you know what hospice care is?” she asks.

“No,” I lie, desperately hoping I am wrong.

“Well, it’s when you stop treatment,” she says. She sounds resigned. “The cancer keeps spreading, and the doctor doesn’t think there’s any point in continuing.”

I am furious with the Ivy League oncologist. Why hasn’t he been able to help her more?

She’ll stay at home, my mother tells me. A local hospice will provide medical equipment, morphine, and eventually, round-the-clock nursing care. The doctor has given her six months. October.

My mother’s decline is fast, then faster. When we visit her in April, she is still getting out of the house. By June, she needs help getting up from the recliner, and by July, she’s had two falls and is stuck in an adjustable hospital bed. Permanently. When she calls my dad for help, her voice is weak and almost despairing. I’ve never heard her sound like this before.

I hate to see her world shrunk to the bedroom, the bedpan, the meals my dad has learned to make after 51 years of marriage. Her only real pleasure is watching cooking videos on her iPad. She is unflappable as ever, but when a visiting nurse asks her the year and the name of the town she lives in, she gets both answers wrong.

When I kiss her goodbye and tell her we’ll all be down in September at the end of my August visit, I don’t know if it’s true.

My mother died at the end of August.

I catch myself thinking of her in the present tense all the time: I have to remind her about an upcoming series based on a book she liked. I will tell her what my four-year-old said. I wonder what she thinks about Elizabeth Warren’s chances. I will hear her voice in my head for the rest of my life, I hope.

My mother would have said she was lucky. She was in good health for most of her life, and her life was quite long. She had excellent health care, and never had to worry about going broke in order to benefit from treatments or services. She was rarely in pain, and when she was, she received quick relief. She had a devoted family and caring friends, and all the comforts contemporary American life can provide. But I have the same complaint that everyone who’s loved a cancer patient has: It’s so unfair.

Still. The patients I spoke to share my mother’s attitude: “I am very, very lucky,” Hollub told me. “My oncologist calls me his outlier.” Ornstein, who now works for Discovery to Cure, a Yale School of Medicine program devoted to the prevention, early detection, and treatment of gynecological cancers, says: “I’m lucky. The average ovarian cancer patient sees four to six doctors before getting a diagnosis,” while she was admitted to a hospital for cancer surgery three days after walking into a clinic with a terrible stomachache. “I’m blessed the way my life has turned out,” Ornstein adds. “I’m able to take my disease and help make other peoples’ lives better.”

Elizabeth Michaelson Monaghan is a former Lilith intern and a native New Yorker. Her work has appeared in City Limits, Paste, and McSweeney’s Internet Tendency.

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November 6, 2019 by

Jewish Women. Breast Cancer.

Art by Liana Finck

Art by Liana Finck

 “Which one of us is it going to be?” Susan Schnur asked the eight women who were sitting around the Lilith editorial table a few years ago. What she meant, of course, was which of us would be diagnosed with breast cancer, the scourge of Jewish women. We eight were the statistical core; one of us might prove the averages right. Schnur, a rabbi, clinical psychologist, and at that time Lilith senior editor, was simply speaking aloud the lurking anxiety so many of us live with.

For a slew of reasons, women of Ashkenazi Jewish ancestry have been found more likely to develop certain kinds of gynecological cancers than women of other groups. The Centers for Disease Control reminds us that one in 40 Ashkenazi Jewish women—usually women of Eastern European descent––has a BRCA gene mutation, and the presence of such a mutation means you have a higher-than-average risk for getting breast cancer at a young age (under 45), and also for getting ovarian and other cancers.

The implications of a breast or ovarian cancer diagnosis can be confounding, with challenging choices, and treatments that carry varying implications. Especially for younger women, who may want to freeze their eggs before treatment, or who facing mastectomy, must weigh the loss of their breasts’ erotic and child-nurturing function. And for women carrying the genetic mutation and who may have seen their own mothers facing breast cancer, there are decisions that require weighing the odds and reading the future in ways that defy all human ability to make accurate predictions: Should I have a bilateral mastectomy even when I show no signs of cancer, to prevent the possibility down the line? Should I freeze my eggs and have my ovaries removed, even though I may never choose to have children—but just in case—in order to eliminate the possibility of ovarian cancer? After mastectomy, do I want to have my missing breast reconstructed with natural tissue? With an implant? Not at all?

Here you’ll encounter a whole range of women’s reactions to the diagnosis that many of us anticipate each time we schedule a mammogram. While Lilith has in the past published occasionally on Jewish women’s experiences of breast and gynecological cancers, starting in this issue, and continuing over the next few months, the magazine will bring you first-person accounts, commentary by scientists, resources for diagnosis and recovery, and a curated online selection of reports from the Lilith archives. This focus is made possible with the support of the Sherril Ann Siegel Memorial Fund, under the auspices of the Alpha Omega Foundation.*

In this issue, you’ll meet a woman in her mid-40s who is already up to her shoulders in life transitions when her diagnosis is delivered. Another who, after chemotherapy and mastectomy at 25, recaptures intimacy with her husband via kinky sex. And a poet now in her 80s whose cancer diagnosis a few decades ago leaves her zest for life vigorously in place. Watch for more—and different—in issues to come.

* The fund is named for a well-known dentist in Washington, DC. Since her untimely death in 1989, dentists in the Greater Washington community have supported the fund’s educational programming in dentistry and breast cancer research and education, including an annual lecture in memory of Dr. Siegel. Further information at Sherril Ann Siegel Memorial Fund, 1234 19th St. NW. #306, Washington, DC. 20036

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November 6, 2019 by

Bonding: Intimacy During — and After — My Cancer

Art by Liana Finck

Art by Liana Finck

We live with our bodies all our lives, and only we know what certain sensations feel like. No one knows our own bodies better than we do. Here’s what I learned about mine as I battled a serious illness.

Back in the summer of 2016 I believed I had pulled a muscle in my chest. But the soreness wouldn’t go away. Eventually, the area that was sore grew a lump: I knew I had to get it checked out. I learned that the lump was breast cancer. I was 25.

In January 2017, after fertility treatments to freeze my eggs, I started chemotherapy. The side effects of chemotherapy can be never-ending. It’s almost impossible to tell exactly what you’re going to experience. This body you once knew so well is thrown into complete chaos. Some of the side effects I didn’t expect: losing taste, my fingernails becoming very sensitive, and vaginal penetration becoming painful because of hormone changes. Most days when I was in treatment, I was too sick to want to do anything, but there would be a few days a month when I felt well enough to get out of the house and be a real person. I would even want to have sex with Elan, my then-boyfriend, now my husband. Prior to my cancer diagnosis, Elan and I had a great sex life. Now, when sex was painful, life became even more frustrating. I wanted to feel that prior connection and closeness with my partner, but my body wouldn’t let me.

Cancer has a way of dehumanizing you and making you feel like you have no control. Whenever we had to stop having sex because I was in pain I felt like the cancer was winning. We needed to figure out a way to find intimacy and pleasure without penetration. Our answer may surprise you, but stay with me. For us, the answer was BDSM.

BDSM stands for bondage and discipline; dominance and submission, or sadomasochism. Let me start by saying that BDSM is not what you read about or saw in Fifty Shades of Grey. It’s an alternative sexuality practiced by consenting adults with a foundation of trust and communication, and it does not always involve sex. The Wikipedia definition of “kink”—which is one way of referring to this practice—goes like this:

“In human sexuality, kinkiness is the use of non-conventional sexual practices, concepts, or fantasies. The term derives from the idea of a ‘bend’ in one’s sexual behavior, to contrast such behavior with ‘straight’ or ‘vanilla’ sexual mores and proclivities.”

Even before my diagnosis and treatment, one of our favorite types of play was impact play: hitting with an object—a hand, flogger, paddle, cane, or something else. Our relationship to pain was positive. Since cancer, I’ve learned that there is a big difference between kink pain and medical pain. Kink pain was pain I agreed to. I could control the type of pain, where I would feel it, and when it would stop, using negotiations and safe words to instruct my partner. With medical pain, I had no say over what I was subjected to.

Because I often experienced negative sensations during treatment, Elan and I changed our form of play. Kink can actually involve the mind more than the body. In fact, it became clear, you don’t really need your body at all—a good trick for when you’re trying to navigate an ever-changing physical state. Mental kinks can involve role-playing, serving or being served, humiliation and degradation, or hypnosis—just to name a few varieties. It takes a good deal of negotiation to know what you can and can’t say to your partner, and for us conversations that led up to these scenes helped to foster our relationship. What’s important to know about kink is that it means 100% consent 100% of the time. Kink is not one sided; it is something everyone involved in the scene consents to. It is not about the dominant partner telling 

the submissive one what to do with no consideration for them. Everything has to be egalitarian for it to work.

Some of the mental play we tried was subtle: a firm, dominant command to go lie down when I wanted to help around the house, but wasn’t able to, a “good girl” when I voiced my limits, even an “I’m proud of you” when I did something challenging. When it came to physical play where I was in the role of the submissive, we abandoned impact for a while and focused on sensations. It’s amazing what a blindfold and various objects can accomplish: when you don’t know what’s soft or prickly or smooth you’re focused on trying to figure it out, not on the fact that you have to go to another infusion in three days. It creates a kind of forced meditation.

Cancer has deep emotional challenges, too. During my treatment, I felt both angry that Elan couldn’t do everything in our lives (for example, errands and household chores) and guilty that I couldn’t do anything to help. Playing the role of a dominatrix was a great way for me to be able to express these emotions in a controlled way. Of course, my psychotherapy was very helpful, but there’s something about being able to use one’s body that talking can’t always live up to, like the difference between strategizing for a game and actually playing the sport.

I was very lucky that I was declared N.E.D. (No Evidence of Disease) after six months, but what people don’t always realize is that cancer is chronic, even when you can’t detect it. The chemotherapy stayed in my system for six months after my last infusion. I had three surgeries within a year. I did a second round of fertility treatments to freeze embryos before getting my fallopian tubes removed prophylactically to help prevent ovarian cancer. I was navigating all of this while trying to get back to a normal life. I also had to continue taking an antibody, Herceptin, until I had reached a year of infusions. Each day, I woke up to my changed physical landscape: giant scars on my body and a numbness in my left breast and the back of my left arm, where lymph nodes had been removed during my mastectomy.

At certain times after my treatment ended, I didn’t care about sex or play. I had other things to worry about. I was fine with not wanting sex. It really didn’t bother me. Then, Elan wanted to have a conversation about feeling disconnected. He missed physically bonding with me the way I had missed feeling physically connected to him while I was going through treatment. We discovered that we had different “love languages” or ways of expressing and wanting to be loved. Mine was acts of service while his was physical touch. He told me that we didn’t need to have sex; that wasn’t the point, but that he would even be happy just making out or cuddling naked. That was a need I could understand and work with.

Trying to figure out “normal” life again was one of only several reasons for my decreased libido. I realized this body that I once knew so well and had grown to love now looked and felt very different. Therapy helped me get through the trauma of cancer and feel more comfortable in my body again. I realized I wasn’t getting turned on because our sexual energy had shifted. Elan had seen me in so much medical pain for so long that he didn’t want to contribute to my pain. This self-proclaimed sadist in our play was now nervous and intimidated by what we had once loved. Attempting intimacy with a partner only to feel like they’re always unsure can be a mood killer.

We realized it was time for us to dive back more fully into our old life. I wanted to reconnect with positive pain to try to forget the negative pain, so we went back to the basics of BDSM : “How much does this hurt on a scale of one to 10?” Scenes with a time limit. And asking/giving as detailed consent as possible. These acts helped him to feel comfortable inflicting pain on me after a year of seeing me in pain he couldn’t control.

I started to talk about BDSM and the onset of a chronic physical illness. I presented at the AltSex Conference in New York last April, and taught classes on the subject with various kink organizations. The more I talked with those in the audience or participants in my classes the more I realized that many people with illnesses and disabilities barely have access to sex education in general, let alone alternative sex education. In actuality, people with disabilities express their sexuality in ways that are as diverse as everyone else’s. People with different abilities should have access to information on how they can make accommodations to enjoy themselves during sexual activity.

It can be challenging for doctors to address these topics because they are, rightfully, more focused on saving a person’s life or on general healthcare. In fact, my incredible oncologist never asked me about my relationship or my sex life. When she asked about symptoms I told her about the pain during intercourse, and she gave me some recommendations. But because she was around my mother’s age I was reluctant to talk to her about BDSM . My infusion nurse was around my age, so I felt more comfortable asking her about which practices were okay and which weren’t during treatment. She was eager to answer the questions, and once even asked me, “Am I about to learn something?” I feel lucky that I grew comfortable talking to my healthcare providers about sex and various sexual activities— including BDSM —but some patients are not as open, and some doctors are not as accepting.

I’m reminded all the time that cancer is a chronic illness. Every six months I still go through three scans, three doctor appointments, and multiple blood tests. Last March I had to have a breast biopsy because of a suspicious finding on an MRI . Luckily, it was just scar tissue from a previous surgery. Eventually, I will need to remove my right breast and my ovaries because of my BRCA 1 gene mutation. When that happens, my husband and I will continue to adapt to whatever situation comes our way: we tell one another “We get through everything.”

My body will change if we decide to get pregnant, and it will change again when I go through premature menopause after I get my ovaries out to eliminate the possibility of ovarian cancer. As that happens, the options our sex life gives us should help keep us close and further develop our relationship.

Whatever this future holds, we know that cancer did not mean the end of our sex life. In a way, it started a new beginning.

Ali Walensky is a 28-year-old teacher and activist. She feels it’s important to share her story in order to help people feel less isolated.

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November 6, 2019 by

Scenes From a Mastectomy

mastectomy

Vision: my breast as the Tabernacle. Open. My lungs like the scrolls of the Torah. But a Torah without end whose scrolls are imprinted and unfurled throughout time…

—Helene Cixous, Coming to Writing, and Other Essays

The greatest kind of courage. The courage to be afraid.
— ibid

Nobody will believe me if I say this. Whenever I think of my mastectomy, I find myself smiling. As if it were a comedy. Is it simply because I survived, and six years later I am still glad to taste the preciousness of life? Is it that I feel like the hero of my own drama, taking my bows?

Is it that I wrote a sequence of poems about my mastectomy, and they turned out to be such good poems that I am grateful to the cancer?

Is it that I was surprised by the love I received, the love I experienced, the resilience I found I possessed, the capacity for healing? Is it that we rise, in crisis, like a wood chip lifted by a wave? Is it that whatever doesn’t kill you, as the saying goes, makes you stronger?

Or do I smile in order not to collapse in guilty grief at the thought of the dead?

It is the weekend before my mastectomy. It is important not to say hospitalization, not to say surgery, but to say mastectomy. The technical, the clear, the precise word. I fight to say it, not to be ashamed. To love myself courageously I must say mastectomy plainly. I go to Clayton’s and buy hot pink pajamas for the hospital, satiny with soft flannel inside. They will be part of my fight to love myself. They will make me look sleek and gorgeous. On the phone to a dozen people, I am told a dozen stories, heroic, pathetic, infuriating. One woman’s survival for years beyond what the doctors told her she would have. Another woman’s experience of waking up without a breast when she thought she was merely receiving a biopsy. Stories of lumps the size of golf balls materializing overnight. Stories involving pus, blood, vomit. Stories about women organizing to demand more research into the causes of breast cancer. Women on chemo, women covering or refusing to cover their baldness. Women whose grandmothers, mothers, sisters have died, who live in dread of the song of their genes. These are the invisible webs women weave together. We spin our secret filaments, filiations, out of the earshot of men. Men who would be scandalized, men who would be horrified, to hear us speak as we do about our bodies. To hear us speak, cackle, whisper and roar as we do about birth, about sex, about sickness. Men who are afraid of blood. Centuries, millennia, of women’s secrets, forced into hiding by men’s dread of our bleeding. Of the phantoms we live among, perhaps the greatest, the oldest, is the colossus of the bloody goddess. Invisible to her children, she bestrides civilization. Her body empties itself and heals but is never closed, it pours forth milk and blood continuously, and we rational beings cannot bear it. We refuse her worship. We pretend she does not exist. The talk that circulates among women—the private telling— is a faint echo of a once-universal psalm of praise and fear, now indescribable.

As soon as I am able to touch it, I resolve to caress this flatness. My chest, my dead-feeling armpit, my arm, all that remains. I run my fingers over the area, petting it, caressing it, letting it know that I am not angry, that it is still my body, that I still love it. I tell a friend that I am doing this, caressing the place where there is no longer a breast, for which there is no name. I press my fingers gently all around the scar, I squeeze my armpit. My friend is surprised.

But if I cannot love my body, I cannot heal.

Once I began wearing the falsie inside my left bra cup, Jerry made a habit of hugging me, squeezing one breast or the other, and saying “Is this the real one? I can’t tell the difference.” Dear Jerry. In bed he fondles the one that remains, and insists that one is just as good as two. I make it a habit to look at myself nude in the mirror until I no longer flinch. I continue to caress my own body, the flat as well as the round, the numb armpit that begins almost to know when it is being squeezed. Sheila’s friend Bev calls to check on me, and reminds me that a woman is really the same person after a mastectomy as before. Bev, I reply, you are so good to call. Thank you. She says the wrinkles in her face make her feel worse than the missing breast.

The Biblical King David, when his infant son fell ill, fasted and wept, praying for the child’s recovery. When informed after seven days that the infant had died, he rose, dressed himself in fine fresh raiment, and ate heartily. His courtiers were scandalized, but the king explained: “While the child was alive, I fasted and wept, thinking perhaps the Lord will have pity on me and let him live. But now that he is dead, can I bring him back again? I shall go to him, but he shall not return to me.” In the same way, I mourned and wept for my breast before I lost it, and when it was gone, I set my spirit to healing.

\Alicia Ostriker is a poet and critic. Her new collection, The Volcano and After: Selected and New Poems, 2002–2019, is out in 2020. A version of this piece appeared in Living on the Margins: Women Writers on Breast Cancer, ed. Hilda Raz (Persea Books, 1999).

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November 6, 2019 by

Information, Support, Restorative Relaxation

❥  Sharsheret is a nonprofit organization created originally for young Jewish women with breast cancer, and now describes itself as “the Jewish breast and ovarian cancer community.” Sharsheret.org has information about testing, diagnosis, counseling and more—including programs and supports for family members. Check out their webinar “What’s Jewish about breast cancer” and blog posts on medicine, science, and personal journeys.

❥ On the Jewish Women’s Archive podcast “Can We Talk” (at jwa.org) you can listen to a conversation on breast cancer as a Jewish legacy.

❥ Most hospital-based cancer centers have strong psychosocial supports available to patients and families.

❥ Hadassah, the largest Jewish and largest women’s organization, is known for its advocacy on a whole range of health issues. They support research and several educational programs focusing on gynecological cancers, including “Celebrate the TaTas,” and an Uplift project featuring—yes—decorated bras. More at Hadassah.org.

❥ Local in-person programs for women living with cancer are now on offer in many locales. For example, the Marlene Meyerson JCC Manhattan and Breastlink New York jointly offer a health and wellness program which includes lectures and restorative yoga. Plus, an annual complimentary spa day (kosher lunch and all) welcomes cancer survivors, underwritten in part by Meredith Berkman in memory of her mother. Similar JCC cancer programs exist in communities as disparate as Asheville NC, Palo Alto CA, Scotch Plains NJ, Cincinnati OH and Syracuse NY. Check your local Jewish Community Center to discover specialized programs near you.

❥ Our genes don’t tell the whole story. Not ever woman who gets cancer carries a genetic mutation, so your genetic makeup isn’t the only predictor. You already know the importance of early diagnosis. The U.S. government’s Centers for Disease Control and Prevention (CDC) puts has useful guidelines about screening for breast and cervical cancers.

 

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November 4, 2019 by

That Was Not My Plan!

Art by Liana Finck

Art by Liana Finck

I’m in the car jammed between my two- and three-year old boys in their bulky car seats. My in-laws are driving us to a playground in our new city, Los Angeles, and my cell phone rings showing an incoming call from my GP. The news isn’t good. My second-opinion cancer surgeon has found something new—an aggressive tumor that throws into question all of the conversations and thinking and agonizing my husband and I have been doing for the last several weeks.

One second I had a mess of stage-zero cancer in my right breast, a noninvasive kind also known as DCIS (Ductal carcinoma in situ). The next second it was DCIS plus something else entirely: an invasive and especially aggressive tumor outside the milk ducts. The shorthand for the type of tumor was “triple positive,”—much more dangerous and frightening than “noninvasive stage-zero”— and I was in shock.

“Not my plan!” I screamed in my head.

In those days, when things didn’t go my older child’s way, he would cry, “That was not my plan!”

Ahh. The Plan, with its many transitions. After six years of major personal and professional transitions, I met my husband-to-be, Benjamin, the very week I started a new job in a new field; then, three months later, after years of working in an unrelated field, came his epiphany that he wanted to become a rabbi; we got engaged, planned our wedding, got married, and planned the next steps with careful intent. He started rabbinical school with a first year in Israel (I stayed in N.Y.), we moved house, we had two beautiful and exhausting boys 18 months apart (unplanned: I struggled with postpartum depression with the first one), and my husband launched a non-profit organization in the midst of our first son’s birth.

It was finally time to take a freaking breath.

The most recent transition had involved a high-stress job placement process for Benjamin in his new career as a rabbi. There was heartache when he didn’t get the offer we had hoped for, followed shortly thereafter by euphoria when an unexpected opening led to an offer at a wonderful synagogue in Los Angeles.

There was also my job: I had been offered a continuing position in L.A. with my New York employer, only to find out, a few weeks before the move, that the arrangement wasn’t going to work out. I scrambled to negotiate a severance package, and realized I’d have to look for work within a month of moving.

Not my plan.

We arrived in L.A. in the summer of 2016. The transition was intense. Also great. And exhausting. And lonely. There we were, using the GPS just to get to the supermarket, with no easy access to public transportation, no babysitter, no friends or nearby family for relief.

Unplanned for, we were caught between old and new cities, old and new career, friends and no-friends. Our boys were between toddlerhood and childhood, between worlds really, with only us to tether them.

I was between being a regular private person and being in the very public role of rabbi’s spouse in a community where neither of us had any history.

By almost any measure, these whiplashing shifts presented a lot to process and adjust to.

Then came the sharp pain in my chest on August 21st, less than five weeks after we

touched down in Los Angeles, and a week before my 43rd birthday. The pain was followed by an emergency room visit, two rounds of antibiotics, then, a few weeks later, ultrasound, a mammogram and a painful biopsy, all of which culminated, one sunny day in September, with the DCIS diagnosis.

Not my plan.

This was days before the High Holidays. I visited my second opinion doctor between Rosh Hashanah and Yom Kippur. While I awaited the results of those biopsies, I sat in a pew and my husband sat on the bimah. Rather than the annual theoretical contemplation of mortality, I was dialing in to very real contemplations of whether I might, in the next number of months or years, live or die.

Even in that terrifying moment, I felt the melodrama, as if I were starring in a Jewish-themed Lifetime Original movie: new rabbi and family join a community far from home. His spouse gets breast cancer and the congregation pulls together to make the family’s first awful months as un-miserable as possible, thus cementing a bond that would last for years. Which, in fact, is pretty close to what happened, unplanned.

How did I get through? Oddly, I don’t remember ever feeling depressed. I felt sad and scared and low and miserable for chunks of time. I remember having a diminished tolerance for my children when they were demanding and whining, or sometimes when they just wanted to play. 

I know depression and how it slithers in and quietly attacks, boring its teeth into all your soft bits. I experienced depression for a couple of years in my early 20s after my 24-year-old sister died suddenly of a brain aneurysm. Then again after my father died suddenly when I was in my mid-30s. Then again after my first son was born and the exhaustion and shock of taking care of a newborn rattled my body and brain for months.

Perhaps because of those devastating experiences, the cancer seemed to me, perhaps irrationally, something I could tackle. My mind always returned to the thought that nothing could be worse—not cancer, not a million simultaneous transitions— than the two worst events in my life, the sudden deaths of my sister and father.

When some of the people I grew close to remarked on my relatively upbeat attitude through six rounds of chemo, a double mastectomy, and the many weeks of daily radiation treatments that followed, I would explain by telling about those earlier losses. But we were also buoyed by waves of emotional, spiritual, financial and culinary support. Friends and family from afar visited throughout the year, and our congregation set up a “meal train” to bring our household extraordinary sustenance four nights a week for seven months.

I found a support center devoted to cancer. In addition to free lectures, gentle exercise classes, and family programs, there were dozens of support groups targeted to specific cancer diagnoses. Mine was made up of badass women of every age with stage 1 and 2 breast cancer. These women, many of whom became friends, shared their struggle with delayed diagnosis, botched surgeries, residual pain, unsympathetic doctors, dreadful side effects, unsupportive spouses, and having to couch-surf all through cancer treatment because of poverty. 

Cancer wasn’t not my plan, but I came to see that while I had an invasive, life-threatening tumor, in so many respects I had it easy. 

I had Benjamin, who with incalculable and selfless love and care supported me every single day, no matter how exhausted from our kids’ sleeplessness and his own new-job and new everything fatigue. He organized the kids, mobilized visitors, brought me delicious snacks, encouraged me to take walks, or lie down, or do whatever I wanted to do. All of this in spite of his own very intense emotions about what we were going through. I know with certainty that I could not do the same; he has an extraordinary capacity to be self-reflective without loitering too long in his own psychological goo.

Then there was media, no small part of my survival. I binged on dystopian fiction: audiobooks of 1984, The Handmaid’s Tale, TV series like Cold War-era The Americans and any dark British mystery series I could get my hands on.

I did punctuate the bleakness with some levity in the form of The Great British Baking Show, Project Runway and Downton Abbey, but mostly I wanted dark. I wanted to swim in other people’s problems. Gratitude with a pinch of schadenfreude.

My dark mood was not purely about my own circumstances. I started my chemo infusions the day before Donald Trump was elected. I now had the shock of that political and social bomb to contend with. I tried to process what had happened to our country. I tried to understand how so many could have voted for him. I tried not to catastrophize. When, later that week the worst of the chemo side effects hit—exhaustion, diarrhea and a generalized awfulness that I called the gaping yaw, it felt like a days-long fever dream.

One thing I did not do was turn to the Internet for solace, help, connections or information related to cancer. I didn’t research the diagnosis, or seek alternative medical paths, or arm myself with the latest statistics and thinking. I found that I was able to be an advocate for myself even without that.

Some women in my support group found all the data grounding and empowering. I found it overwhelming and unhelpful to learn about all of the things I could have or should have done differently to reduce my risk—and which might not have made a difference at all—like get a mammogram sooner, have children earlier, breastfeed for longer, eat less fat, take different birth control. The Web was aswarm with all the ways in which my choices may have contributed to my illness. I’m not proud of not wanting to educate myself more. It’s just where I was.

Once I was diagnosed and had a plan (I went with the second-opinion doc’s approach), life began to feel somewhat knowable again. It would be awful for sure, but if all went according to plan, the worst of it would be contained to roughly one year. Despite the aggressive nature of the tumor, the prognosis was good, because there was a targeted therapy to treat the very attribute that made it aggressive. (Five years earlier, before the treatment was available, things would not have been so relatively rosy.)

The first three of six rounds of chemo were the worst. The gaping yaw took hold and made me want to put myself into suspended animation until the symptoms subsided. It was a challenge to interact, to eat, drink or enjoy anything. It was one of the tightest, chokingest places I’ve ever been.

By the fourth round, I was doing acupuncture and taking medical cannabis (a combined THC and CBD tincture). The two together made a world of difference. My symptoms were far milder and I had more energy. I was starting to come out of that choking narrow place. Mitzrayim. I don’t know a whole lot about the Bible, but this I knew. I knew it from 42 years of seders and from my husband’s commentary. Mitzrayim, the narrows where the Hebrews were held captive, and from which they emerged to a better place.

I emerged with no more cancer, a more practiced parent, a humbled and grateful Angelino.

Elizabeth S. Bennett leads the content strategy team at Capital Group, a global investment manager.

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The Lilith Blog

August 26, 2019 by

A Twist on Doctor-Patient Confidentiality

Radiologist and debut novelist Heather Frimmer tells the story of a mother planning her daughter’s wedding just as she receives a diagnosis of breast cancer in her new novel Bedside Manners. Frimmer talks to Fiction Editor Yona Zeldis McDonough about how her medical training shapes her life as a writer.

YZM: How did your own training as a doctor influence the writing of this novel? 

HF: I work full time as a radiologist specializing in breast imaging. I interpret mammograms, discuss results with patients and perform breast biopsies. 

Joyce’s story was inspired by the thousands of breast cancer patients I’ve had the honor of caring for. I used my observations to make Joyce’s journey as authentic and emotionally resonant as possible. Some of the events in Marnie’s story were inspired by or loosely based on situations either I or my friends experienced on the wards during training. I wanted to explore the doctor-patient relationship from both sides. Choosing both a mother and daughter as the protagonists allows the characters to witness and experience both sides of the relationship alongside the reader.

YZM: Why did you make Marnie a surgeon rather than a radiologist? 

HF: I would have loved to make Marnie a radiologist, but I knew it wasn’t the right choice. Radiologists stare at computer screens in dark rooms while drinking endless cups of coffee—the opposite of dramatic. Making Marnie a surgeon allowed me to put her in more precarious and emotional situations and raise the stakes for her a lot more. 

YZM: The men in the novel respond very differently to the news of Joyce’s cancer than the women; care to comment? 

HF: That’s such an interesting observation. This wasn’t a conscious choice, but I think the difference comes from my personal experience. The men in my life tend to underplay their emotional reactions, only getting upset in the most dire of circumstances. The exception to this rule would be my wonderful husband who wears his emotions on his sleeve without shame.

YZM: During the course of the novel, Marnie struggles with her decision to marry a non Jewish man.  Were you making a larger statement about intermarriage between Jews and Gentiles? 

HF: My goal was not to be prescriptive about intermarriage, but rather to raise questions so readers can think about the issue for themselves. Spouses will inevitably differ in countless ways and learning to negotiate those differences is crucial for a successful marriage. As an obsessive reader, if I can remain happily married for nearly seventeen years to someone who reads less than one book a year, then anything is possible. The keys are open communication, dedication, and acceptance on the part of both partners. 

YZM: Do you think you’ll use your medical background in writing your next novel? 

HF: I am finishing edits on my next novel which follows a male neurosurgeon with an addiction to pills who makes the decision to operate on his sister-in-law’s brain. The story explores how this decision affects not only the course of both of their lives, but of their entire family as well. I love the way my publicist describes this book—” a complex tale of addiction, love, and survival on the operating table.” While this novel does take place in the world of medicine, it strays much further from my area of expertise. This one required a lot more research to get the details right. 

YZM: What’s one question that you wished I’d asked but didn’t? 

HF: I like credit to the authors who have inspired me to become a writer.  Lisa Genova, the author of Still Alice and Every Note Played, along with several other wonderful novels, has been my major inspiration. I love how the way she uses her expertise as a neuroscientist to explore the details of a specific neurologic disease, its emotional ramifications and the ways the disease impacts everyone in the patient’s sphere. I’d be hard pressed to pick a favorite—her books are all that good. 

I also deeply admire Jennifer Weiner’s writing—I faithfully read her novels the day they are released. The way she can make a story hilarious and compulsively readable while addressing serious topics is truly admirable. Her newest novel, Mrs. Everything, just came out in June and is her most ambitious novel yet. She’s truly outdone herself with this one. 

 

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