Tagged Living With Cancer

Keeping the Disruption of a Move in Perspective

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Credit Camilla Engman

At midnight, the ice cube dispenser on the refrigerator is not merely dripping. Water pours onto the floor. I drop down towels, empty the accumulated cubes from their plastic container and pop it back inside the freezer.

“Was that the right thing to do?” I ask my husband, who is trying to sleep. “For goodness sakes,” Don says, getting out of bed. We must leave for my monthly cancer blood test at 8 a.m. tomorrow.

Don pulls out the tray, puts it in the sink, and props up a little stick in the freezer, pushing up the ice maker’s metal wand in an attempt to stop the leak. Might work, might not… I’ll stay awake to see whether the deluge stops. When an unexpected disaster arises, I diminish its significance by comparing it to the worst of my cancer treatments a few years ago. I can do this because my current condition remains stable with an experimental drug.

Yet as I contemplate all the chairs and sofas and rugs that have to be donated to Goodwill, the mattresses and box springs to be given to the St. Vincent de Paul society, my late mother’s files and cabinets, Don’s late wife’s luggage and papers, his massive collection of 78 r.p.m. records, the yards of books on the shelves in the studies, our daughters’ stored memorabilia and their children’s baby equipment, the sheer volume of stuff seems daunting.

We are moving from a house of 4,000 square feet to an apartment less than half that size. One reason for our relocation: Don and I want to release our girls from the responsibility of dealing with the detritus accumulated over decades. We also have to leave because he cannot negotiate the stairs and both of us together cannot manage the upkeep.

Throughout the weeks and then the months when our beloved but aging house has to be repaired so we can sell it, workers arrive to shore up the porch, to fix the bowed ceiling supports in the garage, the cracks over the foyer doorway, a foundation that needs to be anchored to keep the structure from shifting, broken screen doors, mold in basement closets, chipped kitchen cabinets, and (oh!) a tree appears to be growing out of the chimney, and (yup!) an inspector found clogged drains — which suggest there might be trouble with the septic tank.

People tell me that moving ranks high up there on the stress index. But the commotion comes nowhere close to the terrifying havoc of cancer and its traditional treatments. Throughout the weeks and then the months of removals and renovations, the rhythms seem downright soothing, if measured against the ghastly tempos of surgeries, radiological interventions and chemotherapies.

The magnitude of cancer provides a scale against which everything else falls happily short. Cancer can be so bad that it imparts a sense of proportion. The poet Jane Kenyon once said that leukemia and a bone marrow transplant dispelled her fear of flying.

In the midst of all this chaos, I will postpone treating my recently diagnosed osteoporosis — I’m not clear yet about the efficacy of various remedies — but what about the cataract surgery? With or without glasses, I cannot see clearly and I have become the designated driver. Given the boxes mounting everywhere as well as the appointments of various people who are coming to take away the piano and the records and some paintings we won’t have room for, should I cancel? No way, I decide: a piece of cake, in contrast to cancer.

Ever shifting, the cancer terrain is treacherous to negotiate, its perilous landscape always unstable. There are roadmaps, but they often seem indecipherable. With surgeons, radiologists, and oncologists, I advance without a clear sense of how I will end up where and when.

As a cancer patient, I feel like an immigrant in a strange land. The customs of the country bewilder me. Dazed by unfamiliar sounds, sights, tastes, and touches, I had to learn a whole new language quite distinct from the idioms of every day discourse. I will never master it.

I speak of genetic mutations, chemicals and my anatomy in a grammar so simple that it resembles a 2-year-old’s. Terms must be adopted — debulking, PICC, port, PARP inhibitor — for processes I cannot really conceptualize. Frequently, physicians and nurses have to write down or spell out their prescriptions or directions. I mispronounce or stumble over words — anastomosis, extravasation, Gastrografin — that seem foreign.

So even this unsettling removal from a country house to an apartment strikes me as a change I can take in stride. After all, I know the address of my destination, the date of my prospective arrival, the route the truck will take and the neighbors speak my native tongue.

I’m staying up very late and can attest to the fact that the kitchen floor has remained dry. Don and I will travel to the hospital tomorrow and return. I will have cataract surgery and we will reside in a town whose byways may be easier to navigate with improved vision.

When you have cancer, you don’t just have cancer: You might have a broken refrigerator and cataracts and osteoporosis and loads of other issues. But you also have a unique perspective which, in a curious way, helps me keep on moving on.

Susan Gubar is the author of the new book “Reading and Writing Cancer: How Words Heal.”

Parenting Our Children After We Die

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Credit

Accounts of the grief children suffer after the deaths of their mothers or fathers reinforced my desire to use the time granted by treatment to help my adult children cope with my demise. We always parent our offspring to survive us, but cancer intensifies the urgency to do so.

I am not a fan of “anticipatory grieving,” the term psychologists use to describe how some people with chronic disease mourn their expected death with their partners and kids. While I am alive, I do not want to subject my daughters to a long sojourn in the stony valley of the shadow. The idea of converting our present into a prelude of my absence distresses me.

Nor am I thinking of the medical and legal forms — advance directives, living wills, medical powers of attorney — that too many of us leave to the last minute, for those papers are in my husband’s keeping. I am also not considering the words dying people are advised to speak to their beloveds. On my deathbed, I hope I will express my gratitude and love. Given the drugs I will probably need for pain management, however, I cannot count on being coherent then.

Following the lead of other patients with cancer, I have composed two different documents to buffer my girls from the misery that ensues when a parent dies: letters my daughters will receive before and probably after my demise. Though I may never find out if these words ease their loneliness, I like to think they will. And they have certainly afforded me a respite from anxiety.

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A page from “When David Lost His Voice.” <a href="https://static01.nyt.com/images/2016/06/30/health/well_gubar1/well_gubar1-articleLarge.jpg">See a larger version.</a>

A page from “When David Lost His Voice.” See a larger version.Credit

The first is called “What’s Where.” In it, I provide the locations of my lawyer, financial adviser, bank account, will, computer passwords, the girls’ juvenilia, and my personal effects. This one-page sheet of paper concludes with the name of the funeral home that will oversee the cremation of my remains and the site of the cemetery plot for the ashes. If nothing else, I hope that the existence of such a document demonstrates to my kids that I have reconciled myself to my fate.

The second, “Letters to My Daughters,” I began a year after diagnosis and extend periodically. Here, I relate specific memories I have of my two daughters and two step-daughters and more recently of their families. Each time I write a new section, I date it. It has the look of a journal, but consists of a succession of missives, some addressed to all of them, others to one of them.

In this computer file, I recount jokes, recall musical or sports performances during their school years, thank them for material and nonmaterial gifts, characterize their temperaments at birth or what I made of them when I first met them, embarrass them with stories about gaffes they and I have committed, regale them with cooking adventures and vacation misadventures, remind them of celebrations we relished together. Periodically thickening “Letters to My Daughters” inspires me to treasure our shared past. At some point I will print it out and put it in addressed envelopes.

Recently I encountered a short story and a graphic novel that crystalized my obligations and clarified what a terminal patient with younger children can do to help them.

In “Pretending the Bed Is a Raft,” a story by Nanci Kincaid that was made into the movie “My Life Without Me,” 23-year-old Belinda realizes that she will soon die from a gynecological cancer. In a list of things to do before death, she jots down: “tape-record birthday messages for my kids up until they turn 21. Tell them I love you every day.” For her 6-, 4-, and almost 2-year-old, she spends weeks recording instructions and assurances “until she had them all legally grown.”

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A page from “When David Lost His Voice.” <a href="https://static01.nyt.com/images/2016/06/30/health/well_gubar2/well_gubar2-articleLarge.jpg">See a larger version.</a>

A page from “When David Lost His Voice.” See a larger version.Credit

Belinda suspects that if she gave the tapes to her husband, “he would listen to all of them the first night and after that he might lose them altogether.” So she determines to give them to a lawyer “who could dole them out one message at a time on the proper dates.”

About a father with larynx cancer, the graphic novel “When David Lost His Voice” considers what happens to a family when a reticent man becomes more silent during treatments for larynx cancer. In especially poignant pictorial sequences, the Belgian author and illustrator Judith Vanistendael focuses on David’s 9-year-old daughter, Tamar.

Pictures abound of Tamar’s last boat trip with her father, her swimming with the mermaid friend she encounters in the sea and sending a letter to a real friend via a balloon, her later conversations with this boy about how to preserve her father’s soul in a jar, her lying with David in his sickbed. These beautiful images convey the young girl’s fear of abandonment and her imaginative means of sustaining her attachment.

In the hospital, when Tamar hugs David’s emaciated body after his larynx has been removed, she wants her father to stay with her. Unable to speak, he writes her a note: “My darling, I am with you.”

Amid Ms. Vanistendael’s experiments with all sorts of visual forms — anatomical diagrams and scans, traditional comics, impressionist watercolors, pen and ink sketches, children’s book illustrations, surrealistic dreamscapes — I am especially moved by the small frames of David penning his note and of Tamar putting it into a vial she then strings around her neck, to remind herself that her dying father’s undying love will sustain her for as long as needed.

Susan Gubar is the author of the new book “Reading and Writing Cancer: How Words Heal.”

An Artist Takes On Cancer

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Susan Gubar

Susan GubarCredit Vivienne Flesher

In 2010, at age 29, the songwriter and performer Benjamin Scheuer was given a diagnosis of stage 4 Hodgkin lymphoma, a cancer of the lymph nodes. He recounted his experience, along with other family perplexities, when he played himself in his one-man autobiographical musical, “The Lion,” which opened Off Broadway last year. In the new video “Cure,” directed by Peter Baynton and premiered here on Well, Mr. Scheuer conveys the dread that brands cancer patients, whether or not their type of disease is treatable.

As sung by a self-proclaimed optimist who has been given the good odds of an 85 percent chance of full remission, “Cure” begins with a defenseless Mr. Scheuer, supine on a bed. The camera fragments him into body parts: a mouth, a limb, a trembling torso. From an area near his heart, where a port would have been implanted, rivulets of ink streak down his arms to the tip of his fingers, down his legs to cover the soles of his feet, branching over his quivering or convulsing midriff.

The chemotherapy Mr. Scheuer received was called A-B-V-D: Adriamycin, Bleomycin, Vinblastine and Dacarbazine. “Cure” depicts the chemicals striking like lightning, as if to shock the body or map it with bombed roadways, tracking a jagged terrain. The speed of the tattooing brings to mind the words “invasive” and “systemic.” We are looking at a representation of cancer treatment, but the video evokes terror at the disease’s malevolent capacity to spread quickly.

For viewers familiar with Franz Kafka’s story “In the Penal Colony,” the calligraphy on Mr. Scheuer’s skin may recall the sentences, etched by torture machinery, on a condemned prisoner’s body during the 12 hours it takes for him to die. Remarkably, though, the tone of the singer remains less shocked or shocking, more ruefully contemplative.

In a quiet voice, Mr. Scheuer sings about learning the results of testing done after 12 treatments. Although throughout the ordeal he has been fighting panic and fear, they threaten to engulf him as he worries about ending up like his father, with cancer in his brain and his spinal cord. Clothing starts to grow over him, covering his marked body. Does his being passively clothed mean that he is being costumed for a coffin?

After the doctor informs him that the treatment has worked, after his jacket is buttoned, Mr. Scheuer finally sits up, hearing the words “You’re cured.” But the sad final tones of his voice and guitar reflect his isolation in a room with bed sheets that remain indelibly imprinted with the sinister designs.

Although “Cure” seems quite distinct from the more amiable and upbeat folk tunes in his album, “Songs from the Lion,” its hermetic room with its isolated inmate raises issues that Mr. Scheuer addressed with the photographer Riya Lerner in their book, “Between Two Spaces,” namely the alienating landscapes of treatment. (Some of their collaborative work will be on exhibit at the Leslie-Lohman Prince Street Project Space on June 7.)

Cancer patients, who must shuttle between their homes and hospitals, frequently experience the clash between familiar, comfortable environments and strange, anxiety-producing settings. Mr. Lerner explores the disparity but also the blurring of these worlds in a book composed of portraits of Mr. Scheuer interspersed with snippets of texts from his journals. For me, as for Mr. Lerner and Mr. Scheuer, the contrast involves clothing: One of the humiliations of the hospital entails my flesh being exposed in cubicles where doctors, nurses and technicians are fully clothed.

“Between Two Spaces” opens with a picture of a suited but barefooted Mr. Scheuer bending over to choose between two pairs of shoes. It concludes with him sporting a coat and hat in a snowy park. Inside his recording studio or at home he appears blanketed or costumed: “I could control, to the tiniest detail, what I wore,” he explains in a reprinted journal entry, “so the worse I felt the more care I put into the shine of my shoes, the knot of my tie.” But in a PET scan or undergoing chemotherapy, he is only partly robed or completely undressed beneath or entering massive machinery.

The cover of “Between Two Spaces” features what looks to be a soothing picture of a naked Mr. Scheuer partly submerged in a bathtub. At least in my experience, bathing in a tub occurs only in the security of home, not in the hospital. Yet the journal entry, appended to this image within the book, mentions his watching a frightening video of Japan’s tsunami: “The land is now the sea, the churning, angry ocean. Black, filled with unwilling passengers, debris, creating clouds of mist, blindness, dust dirt smoke all grey and brown, all the houses and their red roofs are squeaking clean of their foundations like boats unmoored.”

What had at first seemed a serene portrait of the artist with his eyes closed, floating on the surface of the water, now portends drowning and death. Out of the hospital, as inside it, the patient endures an inexplicable natural disaster.

To my aging eyes, the youthful vulnerability of Benjamin Scheuer makes both the video and the photographs moving. Although, unlike me, he deals with a curable disease, he resembles all cancer patients who must come to terms with the term remission. The poignancy of Mr. Scheuer’s and Mr. Lerner’s images arises from the implacable effect that estranging clinical spaces impose on previously secure domestic places.

Even the cured must take their cancer experiences home with them where, paradoxically, remission — untrustworthy as a safe haven — continues to unmoor us.

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Bad News Delivered Badly

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Susan Gubar

Susan GubarCredit Vivienne Flesher

My friend Dana had become alarmed at a canker sore under her tongue: “a white patch, the size of my pinkie fingernail.” Canker might be cancer, she immediately suspected, possibly signaling a recurrence of her endometrial disease. She called an ear, nose and throat practice and made an appointment for what turned out to be a biopsy.

A week later, a nurse phoned to read the pathology report: “Superficial fragment of moderate to severe dysplastic squamous epithelium, cannot rule out invasive squamous cell carcinoma.” Although Dana urged her to define these terms or explain their significance in this particular case, the nurse resisted, stating that the doctor would explain them in a follow-up appointment the next week.

Needless to say, Dana immediately went online where the definitions did not comfort her. At bedtime, she wept herself to sleep, worrying that she would again lose 15 pounds in radiation, imagining her tongue cut out, brooding over a recurrence and her father’s earlier vocal cord cancer, grieving over putting her children and husband through yet another round of treatment. Finally at the appointed consultation, the doctor said the patch was “probably not cancer.” The pathologists were just “covering themselves” by saying they could not it rule out. She was incensed at having been put through unnecessary distress.

As any medical practitioner knows, uttering the words “severe,” “invasive” and “carcinoma” to a patient in remission cannot but escalate terror. Why couldn’t the nurse or the doctor find the ways and means immediately — in a brief phone call or email — to put those fears in perspective?

Given the paperwork, the patient load, and the long hours of medical professionals, we all understand the constraints within which physicians and nurses operate. Surely neither the nurse nor the doctor was willfully unfeeling. However, their tardy and cryptic announcements resulted in callous care. Whether a medical judgment is optimistic or pessimistic, its inept conveyance can upset or infuriate already anxious patients.

Some of the women in my support group were alone, groggy from anesthesia, and in pain when a poorly articulated diagnosis of gynecological cancer unhinged them. After a debulking operation, Julia recalls, a resident involved in the surgery stood near the door, avoided eye contact, and declared, “Stage 3 — we’re not talking cure now, we’re talking treatment.” When I heard similar words, I was in a crowded emergency room with only a privacy curtain between me and other patients.

Julia, a practicing therapist, believes that “these events are so traumatic that medical professionals need to look out for our emotional welfare . . . to reduce the possibility of PTSD. The person in a life-threatening emergency needs specialized mental health care.” Upon hearing a diagnosis of cancer, patients can plummet into the depressing supposition that their life is effectively over and their rapidly impending death will be painful.

Another very private member of our group — I will use her initials, I.M. — suffered through a delay between intimations of bad news and a diagnosis. After a CT scan, a hospital technician warned I.M. that she might have cancer, but he did not have the authority to discuss the matter with her. She would have to wait until her gynecologist could meet with her — the longest and most harrowing period in her life, she said with a shiver.

None of us were eased by communication strategies that have evolved since 2000 when Dr. Walter F. Baile and his associates published their paradigm for delivering bad news in The Oncologist. This article advocates a program called Spikes: S stands for finding the appropriate setting; P for gauging the perceptions of the patient; I for obtaining the patient’s invitation to hear bad news; K for providing the knowledge that the patient needs to receive; E for dealing with the emotional reactions of the patient with empathy; S for concluding with a needed summary.

Despite such a thoughtful template, miscommunication does not taint only diagnosis, as I.M. realized when she went on to confide about a more recent exchange. At her last meeting with her oncologist, they had discussed the sorry fact that the current cycle of chemotherapy had not inhibited tumor growth. The doctor gave her three choices: returning to the drug used in her first cycle, trying a clinical trial or “opting to do nothing.” Alarmed and shaken by this last proposal, she felt as if he were throwing up his hands or she had somehow been fired.

Because the members of our group had visited a hospice facility, we could assure her that she need never choose “opting to do nothing.” Even when patients decide that the struggle to combat cancer will be ineffective, they can gain access to palliative specialists who will alleviate pain and anxiety while rescuing them from pointlessly aggressive, time-consuming, expensive and debilitating treatments.

It cannot be easy for oncologists to deliver bad news so frequently, but it must be worse for them when they deliver bad news badly. The manners of patients erode as we become maddened by confusion and dread. Injurious words should never add insult to the injuries medical professionals witness and patients suffer daily.

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Pricing a Year of Life

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Credit Stuart Bradford

A radio producer investigating cancer costs once asked me, “What is another year of your life worth?” During my flummoxed silence, she informed me that experts mention the figure $50,000. Can patients like me — older people with recurrent disease — estimate the expense of a future year of cancer treatment to decide whether it’s worth it?

I began to understand the origin of the number when my nephew sent me an article in The New England Journal of Medicine, “Updating Cost Effectiveness.” Its authors explain: “For more than two decades, the ratio of $50,000 per quality-adjusted life-year (QALY) gained by using a given health care intervention has played an important if enigmatic role in health policy circles as a benchmark for the value of care.”

Used by economists, the QALY calculates quality and quantity of life to judge the monetary worth of medical inventions. Since my cancer was diagnosed in 2008, I have wondered how to make this reckoning within our for-profit health system. So with misgivings I set aside the plight of the uninsured and began considering not generic measurements of cost-effectiveness but how much I — as an insured patient — had paid for one year of cancer treatment.

It turned out to be impossible. Never — during four years of operations, radiological interventions, and cycles of chemotherapy — had I been informed beforehand about the cost of any consultation, procedure, equipment or drug. Nor did I understand what would be covered by insurers and (when I got older) Medicare or what would have to be paid out-of-pocket.

After the consultation or procedure, I received impenetrable statements from providers, stamped in large letters, “This Is Not a Bill.” They were followed by cryptic printouts from the hospital that clearly were bills, although next to many entries the word “pending” appeared.

Now, given my erratic bookkeeping, I cannot calculate what I ended up spending.

The camouflaging of cancer costs poses an unprecedented problem. There is no analogue in life — including the approach of death — in which I remain so ignorant of expenditures. Although I have ascertained what cremation, a grave site, and a marker cost, I have no idea what the costs of my treatments amounted to.

During those same years, I could not predict treatment complications that required subsequent procedures and outlays. When an operation necessitated another, the bills multiplied. Humbled by my own unknowingness, I took to heart Kierkegaard’s insight that we must live life forward, even though it can only be understood backward.

Obviously, I was in neither the physical nor the psychological state needed to adjudicate the paperwork. Dazed, frightened and depleted by the alarming threat to my mortality and the debilitation of treatment, I demoted the bills to a nasty irritant. An excellent job with good benefits buffeted me from facing what less lucky people confront: a financial crisis triggered by cancer treatment.

Stints in the hospital enlighten many patients about prohibitive co-pays and costs above coverage ceilings for the large sums charged by surgeons, anesthesiologists, radiologists and oncologists; for operating and hospital rooms, tests and scans, medicine and equipment as well as a box of tissues. The title of an article in The Oncologist about the financial distress of insured patients speaks volumes: “The Financial Toxicity of Cancer Treatments.”

Add to these expenditures exorbitant out-of-network fees, the loss of wages resulting from treatment-related appointments and disabilities, the cost of travel to and from the hospital, and the need to hire child care or housekeeping or elder care assistance. All these combined payments can be staggering.

As for the new cancer drugs, pharmaceutical companies apparently charge whatever the market will bear. A new type of medication, a PARP inhibitor similar to the one I receive in a clinical trial, has been approved by the Food and Drug Administration for recurrent ovarian cancer patients. Lynparza, produced by AstraZeneca, costs about $11,000 a month. That would come to $132,000 a year. After a media flap a few years ago over Zaltrap — doctors at Memorial Sloan Kettering boycotted it, saying it was no more effective than a less expensive drug — its producers cut the price in half.

No wonder, then, that people with cancer are more likely to go bankrupt than other Americans. The authors of The New England Journal of Medicine article conclude that the QALY has been underestimated. For a single threshold now, they would suggest either $100,000 or $150,000 per QALY.

Whatever the estimate, a crude ratio of cost effectiveness, like the QALY, seems presumptuous. How can qualitative factors (nausea, fatigue) be converted into quantitative numbers? How can general calculations account for individual variations (my preference for fatigue over nausea) or overriding personal beliefs and principles about what constitutes a valuable existence?

Yet it would help patients like me to participate in sober public conversations on these issues since many of us are aware that individual decisions about medical costs sidestep vexing social questions of why they are inflated and how they will tax our children and grandchildren. At the least, more transparent communications would alleviate widespread fears that living life forward could trip us backward into penury.

For the past three years, the clinical trial in which I participate has covered most cancer-related expenses. When the drug in my trial fails, I want to have some say about whether another year of my life is worth the cost of treatment. But it will take a change in the current way of doing medical business to make that possible.

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A Bittersweet Passover: Cancer, Remission and Change

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Credit Camila Engman

Despite good news about my cancer treatment, it has been a hard winter, so I am looking forward to Passover. By retelling the story of the Jewish people’s escape from slavery in Egypt, the Haggadah — the text recited at the annual Seder — celebrates deliverance and springtime renewal. How would its rituals and prayers resonate for me this year, when cancer concerns were unexpectedly supplanted by other tribulations?

Alesha, the research nurse of my clinical trial, informed me in February that she and my oncologist were requesting an amendment of the Phase 1 study rules on my behalf. Since August 2012, I have driven up to Indianapolis every month for tests that have charted my vital signs and the CA-125 blood marker of ovarian cancer. The signs remained good, the marker stayed low, and each month Alesha passed over another bag of the experimental pills. Soon the leash tying me to the hospital will loosen. Maybe I will get two or even three months of pills all at once.

My jubilation was tempered by the difficult circumstances with which I currently contend. Over the past year, my husband, Don, has suffered a series of debilitating accidents, surgeries and infections. Just when I was priding myself on caring for Don as devotedly as he had cared for me, I slipped and fractured my pelvis. Once energetic seniors, Don and I now hobble around on canes, a geriatric duo. Grounded, we realize that we must move out of a country house we love but cannot maintain.

As I turn over the pages of the Haggadah in preparation for the last of some 22 Passovers we have commemorated here, I find myself startled by its images of the inextricable collocation of joy and sorrow. On the Seder plate, parsley, celery and scallions represent nature’s regeneration; however, they are dipped into salt water, signifying the tears of oppression. We read that the lettuce on the plate starts out sweet, but it becomes bitter if left in the ground too long, just as people do in bondage.

The Hillel sandwich best exemplifies the discord of elation and distress. It consists of matzo eaten with charoset (often a mixture of apples, honey, cinnamon and wine) and maror (horseradish). The horseradish, if strong enough, can elicit yowls from guests simultaneously savoring the honeyed fruit which, oddly, represents the mortar used in making bricks for the pharaohs.

Dissonance resounds throughout the Seder story. The sustaining matzo we are enjoined to offer all who are hungry and needy is the bread of affliction, baked hastily by migrants fleeing for their lives. Although the story says that the Angel of Death passed over the houses of Jews, the first-born babies of the Egyptians died. Liberation from slavery occurred centuries ago, yet the Haggadah states that in every generation, all participants should regard themselves as if they have personally come out of slavery. We are each and every one of us strangers in a strange land, but the Jews arrived at their promised destination.

The state of cancer survivorship has everything to do with this weird sort of discordance, or so it seems to me. Life-saving protocols produce injurious side effects, impairments or mutilations. The relief of remission is shadowed by fear of recurrence. While I profit from a targeted drug, two members of my support group report the failure of their chemotherapies. Those in the group who exult at being cancer-free mourn the three participants whose lives have been cut short by the disease.

According to the essayist David Rakoff, living with cancer may also blur “the borders between the micro and the macro,” leading people to conflate private with public woes: “The world seems lethally friable.” As the political becomes personal, the incivility and violence of presidential contests in this country scare me. Then there are the bombings overseas. That politicians recurrently refer to terrorist cells as cancers rightly suggests that cancer terrorizes its hosts, but the victims of terrorism have no recourse to treatments.

This year, the narrative of the Seder will remind me that we all remain in captivity while millions of refugees suffer in exile and populations across the globe struggle with anti-Semitism, racism and sexual slavery. To symbolize the need for a renewal of faith in forces that can right these grievous wrongs, after the meal we will open the door for the stranger and sing a hymn to the prophet Elijah, who heralds harmony and redemption.

Considering cancer research, I rejoice that the clinical trial in which I participate means a little bit of redemption for women who test positive for the BRCA1 or BRCA2 mutations. Drugs called PARP inhibitors, like the one I take, will extend the progression-free survival — the length of time during and after treatment of a disease that does not worsen — of women whose ovarian cancer was caused by these genetic mutations. But I grieve over the majority of ovarian cancer patients besieged by a miserable prognosis.

For me, living longer means getting old — which, my mother always told me, is not for sissies. As I welcome Elijah this April, I will be hoping that Don and I garner the strength to open another door next year — not in our spacious country home, rich in the memories of Seders past, but in the promised land of a one-story, in-town apartment we can manage to negotiate. It is a bittersweet prospect for which Passover will prepare us.

Susan Gubar is the author of “Reading and Writing Cancer: How Words Heal,” which will be published May 17.

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After Physical Therapy, Why Not Cancer Therapy?

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Susan Gubar

Susan GubarCredit Vivienne Flesher

In mid-January, after a fall on invisible ice, I was informed by an emergency room doctor that my fractured pelvis would heal in six to eight weeks. To help me recover from the injury, therapists started coming to my house. Their ministrations posed a question that nagged at me: why aren’t trained professionals made available to cancer outpatients in the way occupational and physical therapists are routinely assigned to orthopedic patients?

The occupational therapist appeared only a few times, when I was completely incapacitated. With extraordinary tact, she taught me how to unclothe in a narrow bathroom and then positioned me on a bench in the tub where I could use a hand-held shower.

Throughout February, my physical therapist, Sherry, rang the doorbell twice a week, entered as she heard me yell “Come in,” and placed a clean pad under the large bag she put on the floor near the blue couch on which I reclined. Out came the equipment she used to check and record my vital signs. The rituals that followed slowly raised my levels of mobility and confidence.

At the beginning, Sherry suggested ankle pumps and a few stretches. She would watch me rise to the walker and shorten its legs or tell me to change my gait. A week later, she had me move to the bedroom to show me the least painful way to get into or out of the bed. So I could sleep on my side, she propped a pillow between my legs.

Later in February, Sherry taught me the Clamshell: lying on my right side with my knees bent, feet together, I moved my left knee up a few inches. I could feel the muscles strengthening. In early March, she encouraged me to place my hands on the kitchen counter and raise my strong leg off the floor for 20 seconds in a pose I called the Flamingo. Putting weight on my weak leg gave me the sense that I might meet my goals: to graduate onto a cane, go up and down steps and become a functioning biped again.

Not one comparable sequence of instruction occurred during my eight years of cancer treatments, although I was much more incapacitated and traumatized at the start. Reeling with anxiety back in 2008, I never received any professional assistance at home for wounds, edema, neuropathies, fatigue, weakness, eating disorders, drains, elimination problems, rashes, insomnia, infections, a PICC line, and other complications that were especially shocking during the first year after diagnosis. I relied only on family and friends.

What escalated the injury of cancer for me was the passivity medical protocols produced or required. I was knocked out by anesthesiologists, cut up by surgeons, and infused with chemicals by nurses. “The very word ‘patient’ (Latin root, patior, ‘to suffer’) is a giveaway,” the columnist Max Lerner once explained. “Patients suffer things to be done to them, becoming thereby the acted upon, the diminished.”

Cancer patients like me would profit from supportive care aides who could spring us from this induced passivity and its accompanying fear. In my case, such a counselor would have allayed the bewilderment of treatment and also empowered me to exert a modicum of control over the broken rhythms of everyday existence.

Perhaps very wealthy people find and hire staff with the requisite expertise, but it never entered my mind. My new oncologist, Dr. Mina, assures me that breast cancer patients do receive physical therapy after mastectomy to prevent lymphedema. After a massive debulking operation for ovarian cancer, however, no physician or nurse ever hinted at the possibility of my obtaining outpatient therapy. Wouldn’t people with prostate or lung, throat or colorectal cancer prefer to receive help at home than go to the emregency room — a prospect that terrified me?

Sherry’s interventions persuade me that therapists could provide cancer patients a multitude of ideas — on pain management, nutrition options, personal hygiene strategies, psychological and sexual prompts, meditation and massage and workout routines — to ameliorate the harms cancer and its treatments typically cause.

Is this sort of therapy unavailable because insurance companies will not cover it? Or it is unavailable because it brings no profitable returns to hospitals? Yet paid therapists might be less expensive than recurrent E.R. visits as well as the psychic toll exacted by the depression that frequently burdens cancer patients.

Why not use the model of the occupational and physical therapist in orthopedics to create a central role for therapists in oncology, advisers who could help cancer patients help themselves in taking small, strengthening steps? After surgery and at the start of chemotherapy, my family and I would have given anything for the house calls of a creature we never imagined: an oncological therapist.

“What a comfort such a person would have been,” I said to Sherry after one of our sessions. “An oncological therapist might have given me what you give me — a sense of agency.”

Sherry said she had done extensive training in a host of proficiencies that would be useful for cancer patients, as have many of her peers. “Physical and occupational therapists with all sorts of skills pertinent to cancer treatment abound, but to enlist them, specialists in surgery, radiology, and chemotherapy need to think outside their specialization.”

Then she added, “Maybe the oncologists need to be educated.”

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Living With Cancer: Being Erased

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Credit iStock

While I recover from a fractured pelvis, I have time to remember the day after a less ruinous fall two years ago. No bones broken then, but I quickly developed a shiner and then slowly an insight into the color of cancer.

A bluish-purple humdinger bloomed beneath my right eye, spreading its tendrils down my cheek. Leaning over or a deep breath hurt. With too many cancer-related hospitalizations, I was determined to avoid the emergency room. Learn from the pain, I instructed myself, and prepare your dish for the potluck: The word tugged me back to the 1970s.

I had slipped on the way to the bathroom at 4 a.m. A thud — my body hitting the hardwood floor — woke my husband who immediately supplied towels to sop up the bleeding from my forehead. Was that fall a consequence of the targeted medication of a clinical trial, a sliver of Ambien, the neuropathy in my feet from past chemotherapies, or all the above?

Still, food needed to be prepared for the gathering I was supposed to attend that evening of retired faculty women from Indiana University. The company would consist of compatriots on all sorts of committees over the course of some 40 years. We were the ones who arrived at the university to integrate the mostly male faculty. Many of these people had consoled me when cancer treatments necessitated my retirement.

I had already blanched the asparagus and started a dressing. As I assembled the dish, I rehearsed parries to the concerned comments my black eye was sure to elicit. “You should see the other guy,” I would tell my former colleagues. Or “It’s a counter-irritant; it takes my mind off cancer.”

After finding my way to the dinner, I joined some 25 variously frail and hale retired faculty women who had brought quiches and salads for a communal meal. They were filling their plates and sitting in small groups.

With only a spasm of pain, I settled on a couch next to a friend and started to launch into one of my usual shticks: that she should participate in the oral history project to document her work establishing gender studies and African-American studies at our university. But she interrupted me.

“Do you realize that I am the first black woman to retire here since I don’t know many years ago?”

Then we were off and running down memory lane: recalling E.S., a pioneering scholar, and C.M., a brilliant teacher. Careers blindsided, people lost to us. What had happened to them? Gone without a trace. Did their isolation in a Midwestern college town depress them and had their depression further isolated them? Were they pigeonholed as representative African-Americans and erased as unique human beings? Although the administration tried various retention strategies, somehow the environment remained inhospitable.

“It’s still a hard place to be a black woman,” my friend sighed.

While driving home I had worried and wondered why E.S. and C.M. did not, could not navigate their way to that evening’s event and whether newly hired African-American women would find the path as hazardous now as it had been then. At my front door, though, a more self-regarding thought stopped me in my tracks.

How odd that not one person had mentioned my black eye! “You look great,” one and all had volubly exclaimed at my coming and then at my going.

Did my friends assume that oncologists routinely punch their patients in the face? Or were they exhibiting some version of Midwestern niceness? Or are cancer patients invisible as individuals, visible only as cancer patients who must be perpetually bolstered and boosted? My colleagues had seen Susan with cancer, not Susan who arrived in their midst with a black eye.

“People who have had cancer are treated as a kind of minority group,” the prostate cancer survivor Michael Korda believes, “as if the most important thing about them is their cancer, much as many people still treat African-Americans, as if the only thing that matters about them (or to them) is that they are black.”

During the following months, I mulled over the hyper-visibility of categorized cancer patients and African-Americans, on one hand, and their invisibility as individuals, on the other.

Only this year, since it takes me quite a bit of muddling to learn anything, did Michael Korda’s insight make me realize how very few cancer memoirs we have from people of color, despite exceptions like those produced by Audre Lorde and Robin Roberts.

The experiences of minorities remain strikingly marginal in cancer literature: not only in memoirs but also in blogs, diaries, essays, stories, plays, novels, movies and television series. Since these genres generally express the perspectives of individuals, we are impoverished in our understanding when what we read and see excludes the reactions of patients from various economic and ethnic and racial backgrounds. Mortality statistics and drug advertisements notwithstanding, the cancer patients many of us imagine — as individuals enmeshed in their own stories – are white.

In the prize-winning book “Citizen: An American Lyric,” Claudia Rankine describes taking a few steps back when someone with multiple degrees said to her, “I didn’t know black women could get cancer.”

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Living With Cancer: A Farewell to Legs

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Credit Camilla Engman

On a bright, cold Sunday in mid-January, I returned home from visiting a frail member of my cancer support group and opened the garage to haul the recyclables up the steep driveway to the street. After a few steps, my feet started to slip and I fell with a thud on my bottom. The big bin toppled over me, scattering plastic containers and cardboard boxes, as my hands reached down to feel a sheet of ice that had been invisible on the asphalt.

I was about to discover what happens when cancer patients must deal with unrelated physical injuries.

After some screams of pointless rage, I realized that my husband — who was recovering from surgery for a torn tendon — could not hear me inside the house. So I crawled, using my arms to prop myself up, back into the car where I phoned and directed him to bring his walker to the front door. I managed to steer the car up the driveway, hobble with the walker inside, and collapse onto the blue couch. If I did not move, the throbbing seemed bearable. Since it was late afternoon and my husband’s injury rendered him unable to drive me to the hospital, I settled down in the hope that rest would help.

But I awoke without the use of my legs. Any pressure was excruciating, so we called a friend for a lift. At the E.R., scans showed three pelvic fractures. I would be unable to get around for quite a few days and then not without a wheelchair or a walker for weeks. Unlike Ernest Hemingway, I did not believe that I would soon feel “strong at the broken places.”

“What’s next?” Mrs. Job started kvetching inside my head. “Locusts?” How could doctors perform a pelvic operation on a person who had undergone umpteen abdominal surgeries for ovarian cancer? With an ostomy, my innards were not like those of normal people. Might such an operation trigger a recurrence? What if the anti-cancer drug I take daily impedes bone regeneration?

When the E.R. doctor explained that in this case the fractures should heal themselves, a wave of relief enveloped me. Her words prompted a series of reflections about disability and cancer.

To begin with, I knew that the experience would have been worse, if I had started out disabled and subsequently received a cancer diagnosis. Paradoxically, you need to be agile and sturdy to manage the unrelenting routine of cancer treatments. Only now do I realize how exceptionally difficult it must be for disabled cancer patients to travel repeatedly to the hospital, to undergo operations or infusions or radiation, and to cope with debilitating side effects. I had learned how to negotiate those straits and could imagine the difficulties of adapting them to my altered condition.

Back at home, I found myself marooned on the blue couch, unable to reach the bathroom or the bedroom or even sit up without terrible spasms. My attendance at support group meetings would have to cease and I feared that I would never see one of my friends, Carrol, again.

Carrol had started on hospice care in October. She remained at home for three months, but then, unexpectedly, she tolerated some food. Confined to her bed and unable to determine where or how quickly metastases were advancing, she did not know how much time she had: another week, a month, or more. Recovery was not in her lexicon.

At the close of every visit, we had made our final embraces and goodbyes. A week or two after my fall, I realized that a profound appreciation of her past life and a profound acceptance of her future death stood Carrol in good stead, not a macho determination to battle and beat the disease.

Carrol knew that a clinical trial had granted me a precious remission. On the day I received news of her death, I pondered her decision — upon learning that her cancer was terminal — to throw herself a Last Chance to Dance party.

She had wanted me to relish a reprieve she never received. My unforeseen stay of execution should ground my determination to embrace whatever befalls me — for better or for worse, in sickness and in health — until that moment when I would arrive at the state she inhabited when I last saw her. Although unwelcome, disability has everything to do with my future life, not my future death.

As hydrocodone kicks in and physical therapists teach me how to negotiate without two weight-bearing legs, my temporary immobility shrinks in significance. These professionals try to wean me from an ungainly version of slipping and sliding steps — something like the Mashed Potato — that get me from the wheelchair or the walker onto the toilet or the bed.

Considering the example of Carrol, I bid farewell to my legs and take up arms against a sea of troubles more negotiable than the miseries with which she had to contend. Doing the Mashed Potato, wincing in pain, graceless under pressure, I hoot to nobody within hearing: the hell with you, Hemingway! I am quarreling with the writer who (to my mind) most brilliantly and foolishly dramatizes the challenges of personal bravery.

Later that night, as if conjured, he slides into a chair next to the blue couch, lifts a glass, and breathes the word “courage.” It’s a complicated matter, we agree, and then we clink.

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Living With Cancer: A Woman Like Me

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A Woman like Me

A clip from “A Woman Like Me.”

By FILM PRESENCE on Publish Date February 3, 2016.

We commonly assume that cancer afflicts the aging or aged, but approximately 16 percent of breast cancer deaths involve women under the age of 50. How can or should an alarming death sentence be confronted in midlife? The personal challenges posed by incurable disease unfold in an absorbing documentary about movie-making, “A Woman Like Me,” which opened in New York in October and became available on Netflix this January.

The co-directors of “A Woman Like Me,” Alex Sichel and Elizabeth Giamatti, consider the roles played by temperament, spirituality and art as two vigorous women attempt to reconcile themselves to a terminal prognosis. The film portrays Ms. Sichel confronting metastatic breast cancer by making two movies.

The first is a documentary of herself in the hospital with medical personnel and at home with her family. Ms. Sichel, who received the diagnosis just before her daughter started kindergarten, is shown dealing with her ambivalence about the traditional therapies she undertakes. Her parents, sisters and husband struggle on camera with their ambivalence about the holistic therapies she also undertakes.

Braided with the documentary, the second movie Ms. Sichel makes is fictional: The actress Lili Taylor plays a buoyant alter ego, Anna, who must respond to the same dire diagnosis. The fictional narrative of “A Woman Like Me” centers on a happier version of Alex Sichel so she can watch someone stepping lightly through her fraught terrain.

For example, Anna sits with a friend in a restaurant and interrogates the waitress. Is there dairy in the vegetarian dish? Are there gluten-free options? Her friend orders the cavatelli, Anna steamed kale without salt. After a pause, though, she changes her mind; she will have the cavatelli as well as a glass of Cabernet. In the near future, she says, she does not want to look back on “pointless good behavior.”

In contrast, Ms. Sichel presents herself in a series of tortured conversations with a variety of advisers as she hurtles between fear and hope on an emotional roller coaster. She visits a meditation center and consults a Buddhist teacher, but equanimity often eludes her. Intermittently sad and angry, yet terrified of dying angry, she tries to find serene memories, only to recall her sorrow at her grandmother’s death, whereas Anna remembers her grandmother’s cooking.

“A Woman Like Me” hints that some people may be endowed with a disposition that facilitates their making peace with their imminent demise, although maybe those people exist only in fiction. Yet both stormy Alex and sunny Anna try to learn how to acknowledge their looming mortality. In especially poignant scenes, Alex and Anna must come to terms with their grief at losing their young children and also with their children’s future grief at losing them.

Anna copes with cancer most dramatically when she rehearses her death with her husband. Enlisting his help, she promises to refrain from moaning, but wants to know what his final words to her will be. And then she encourages him to drape a white sheet over her head. Anna’s directing the scene with her husband tells us something about Alex Sichel’s decision to spend the last year of her life co-directing a movie.

Like Anna’s rehearsing, Ms. Sichel’s movie-making is a testament to creativity and to the multiplicity of the self. Ms. Sichel refutes what cancer will inevitably make of her by imagining what she makes of it. In “A Woman Like Me,” she offers a defense of cancer art as a way of envisioning and practicing mortality. Throughout the film she espouses the efficacy of Buddhism, but the creator of Anna provides us proof of the value of story-telling.

If Alex Sichel could not become a sunnier person, she could envision herself being one. Through this endeavor, she and her co-director, Ms. Giamatti, illuminate what it means to live with incurable cancer not, as Ms. Giamatti put it during a phone conversation, in a “Halcion or Hollywood” manner, but in all its messy and contradictory intensity.

After watching the movie, I was upset at learning that Ms. Sichel died on June 23, 2014, at the age of 50, and then I was surprised at my distress since the end of the film makes it abundantly clear that she was suffering advanced disease. Yet somehow I could not believe that this engaged and engaging woman was dead. My reaction also testifies to the power of art, for Alex Sichel and her double Anna continue to touch and instruct people like me by showing us characters like ourselves.

If we cannot attain complete and lasting tranquility in the face of a death sentence, we can nevertheless conceive of a series of precarious, provisional moments of acceptance. Story-telling serves not as an escape from the reality of disease but as an assertion of the self against what will eventually happen.

Terrible as cancer is, it has prompted people to produce astonishing art. The power of this meta-movie resides not in retrospective platitudes about women with metastatic disease but in its representations of their urgent exertions to imagine the unimaginable.

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