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[Book Summary] The Undying: Pain, Vulnerability, Mortality, Medicine, Art, Time, Dreams, Data, Exhaustion, Cancer, and Care

The Undying (2019) is a searing, poetic account of the author’s journey through an aggressive form of breast cancer. It’s also a seething appraisal of women’s experience of this illness, in history and literature, as well as in the present-day United States.

[Book Summary] The Undying: Pain, Vulnerability, Mortality, Medicine, Art, Time, Dreams, Data, Exhaustion, Cancer, and Care

Content Summary

Genres
Introduction: What’s in it for me? A fiery, unforgettable account of one woman’s battle with aggressive breast cancer.
Anne’s diagnosis was very hard for her to process. She felt fine – but medical science was telling her she was seriously sick.
Chemotherapy is a humiliating, degrading, and dehumanizing experience.
As a sick person, Anne realized her friends, her doctors, and society in general treated her in very different ways.
Anne’s mastectomy was an infuriating experience.
Women with breast cancer suffer at the hands of the very institutions meant to be protecting them.
Surviving breast cancer is a matter of chance. It does not depend on whether you conform to the cancer narrative.
Final Summary
About the author

Genres

Health, Nutrition, Biography, Memoir, Autobiography, Medicine, Writing, Essays, Poetry, Science, Medical, Diseases, Physical Ailments, Women Author Literary Criticism, Breast Cancer, Women Writers in Women Studies

Introduction: A fiery, unforgettable account of one woman’s battle with aggressive breast cancer.

In 2014, when poet and essayist Anne Boyer was 41, doctors told her she had aggressive breast cancer. It was the so-called triple-negative type – the kind that kills about half the people who get it.

The trauma of what happened next was almost unbearable: six months of aggressive chemotherapy, a double mastectomy, and reconstructive surgery. It took Anne five years to write a memoir of everything she had to live through. But, even after all this time, she still cannot fully process her entire experience for fear that she’ll never get over it.

This trauma will probably stay with the author for the rest of her life. And it is not merely physical. Yes, she underwent toxic chemotherapy and suffered through the removal of her breasts. But what she also discovered during treatment was no less traumatic.

The author’s new knowledge about the profiteering, patriarchal, institutionally racist corporations involved in cancer care and treatment is something that will continue to affect her day after day after day.

In these summaries, you’ll learn

  • what song you don’t want to hear on the radio en route to chemotherapy;
  • why some people are sexually attracted to cancer patients; and
  • why triple-negative cancer has no targeted treatment.

Anne’s diagnosis was very hard for her to process. She felt fine – but medical science was telling her she was seriously sick.

Anne was wearing her usual summer outfit: cutoffs, a green tank top, sandals. She sat in a climate-controlled room, across a desk from a woman dressed in official, dour gray. The woman’s job? An investigator. But not the sort you see in police thrillers.

She was there to help Anne investigate her feelings.

Sometime earlier, Anne had found a lump in her left breast. A medical investigation confirmed: she had a tumor. A technician showed her an image of this new growth inside her body, and Anne photographed it: a round object, with a long, jagged pointing finger.

The key message here is: Anne’s diagnosis was very hard for her to process. She felt fine – but medical science was telling her she was seriously sick.

Before Anne was diagnosed with breast cancer, she had never really thought about it. She’d read that the treatment had advanced and was relatively easy. People’s lives were interrupted, sure, but most got through it.

But her tumor was different. Anne had triple-negative breast cancer, the deadliest kind. There is no targeted treatment for it.

A picture Anne found online helped her process the news visually. The graphic was simple: just a hundred face emojis. Fifty-two were green and smiley, showing women who lived. And 48 were pink and frowning. They represented people who didn’t.

Anne and her friends had a nickname for her oncologist. They called him Dr. Baby because he looked so much like a chubby angelic child. But the news he gave Anne was terrifying. The rate at which her tumor was growing was four times higher than the speed that doctors describe as very aggressive. Dr. Baby recommended immediate chemotherapy. To refuse, he said, was to die. And to accept – Anne thought – was probably to feel like death but possibly live.

She went on the Internet – and found plenty of strong opinions there. People suggested she should tell her mother, tell her daughter, and negotiate with her employer. She was also supposed to deep-clean the kitchen, find someone to look after her cat, and buy clothes that would accommodate the coming chemotherapy port in her chest: an opening through which drugs could be delivered directly into her bloodstream.

Chemotherapy was still some weeks away for Anne. But as she waited, her tumor started to hurt. Her surgeon said the reason was simple: it was growing.

Chemotherapy is a humiliating, degrading, and dehumanizing experience.

Anne’s chemotherapy sessions happened in what’s called a cancer pavilion. She was confused by the name. A pavilion sounds like something that should be almost palatial.

But there was nothing grand about the cancer pavilion. It was a place for suffering, organized for maximum profit, not for patient comfort.

The key message here is: Chemotherapy is a humiliating, degrading, and dehumanizing experience.

There was a cruel democracy of appearance in the cancer pavilion. Everyone looked the same – swollen, with heads shaved. Things that were meant to be kept inside the body leaked out: blood, vomit, foul odors. People’s urine was so toxic that bathroom instructions told patients to flush twice.

Every time Anne was due in hospital for another round of chemotherapy, her friends came over to stay with her. They never spoke about the treatment ahead of time – except to set alarms and plan the best route to the pavilion.

They listened to the radio on their way there, trying to predict how things would go based on what songs were playing. Queen’s “Bohemian Rhapsody” was a bad omen; TLC’s “Waterfalls” was slightly better.

Preparing for another round of chemotherapy, Anne says, is like preparing for a houseguest, a winter storm, the birth of a child, a virus, and a holiday – all at the same time. And this, just a few weeks after living through exactly the same combination.

At the hospital, a nurse inserted a large needle into the chemotherapy port that had been installed in Anne’s chest and then injected Adriamycin into her jugular vein. The medicine is wildly expensive. It’s also highly destructive. In fact, Adriamycin is so dangerous that the nurse had to wear a hazmat suit as she administered it. The rumor in the pavilion was that this drug would melt linoleum if somebody spilled it on the floor.

The immediate side effects of this drug include untreatable pain, loss of hair, fingernails, and toenails, and even nerve death. All these, Anne experienced personally. Over the longer term, treatment with Adriamycin can bring on infertility, leukemia, and heart failure. It can make the brain’s white and gray matter wither. Patients sometimes lose their ability to speak, read, remember, and make decisions.

There is no cure for these side effects.

Anne knows women who say they would rather have died of cancer than lived through this treatment. After four doses of Adriamycin, combined with a type of mustard gas used in chemotherapy, Anne’s tumor hadn’t shrunk at all.

As a sick person, Anne realized her friends, her doctors, and society in general treated her in very different ways.

Clichés about cancer are plentiful. Patients are supposed to be brave and strong. That’s what popular culture expects from them. They’re expected to hide their fear and inspire others with their courage. They should wear stylish headscarves, like Dana in The L Word, or fling their wigs into rapturous crowds, like Samantha in Sex and the City.

But responses to cancer are complex and unique. Popular culture does not recognize this, and neither does the medical system. It has trouble seeing patients as people.

The medical system makes little allowance for human behaviors. When patients ask questions, bring in conflicting research, or show up late, this system assumes that they are driven by the influence of another, competing system, like superstition or misinformation.

The key message here is: As a sick person, Anne realized her friends, her doctors, and society in general treated her in very different ways.

When Anne’s tumor didn’t respond to chemotherapy, Anne decided to leave Dr. Baby and seek advice from a different oncologist.

The new oncologist approached Anne’s treatment much more aggressively. After a few weeks, her tumor stopped hurting.

Anne wasn’t out of the woods yet, though. She was still bedridden and in severe pain. Death was almost the only thing she could think of. But Anne wanted to live, and, in a way, reflecting on death was living. She warned her friends: don’t try to make me stop thinking about death.

People reacted to her illness in different ways. Some friends left her. Lovers paid one last visit. A man she once met in a bar became so attentive she had to block his number. Anne and her friends wondered about fetishists – cancer daddies who show up with gifts and burned CDs. Could they be attracted, in some way, by the fact that the disease isn’t transmissible? Is it almost like “Anne has cancer, so I don’t have to?”

But that’s not how it works, of course. We all live in the industrial world. Our air, food, water, and medicine are full of carcinogens. Up to half of us will someday have cancer, if we don’t have it already.

Anne thinks the familiar slogan “Fuck cancer” misses the mark. Rather than condemning cancer, maybe we should condemn the world that gives it to us, bankrupts us for a cure, and leaves us alone to die.

Anne’s mastectomy was an infuriating experience.

Anne is, by her own description, an ordinary type of person. She is a single mother with no savings, no partner. She had to work throughout her treatment. And she knew that telling her employer about her cancer would imperil her career.

Single women, like Anne, die of breast cancer at twice the rate of married patients. And if you’re black or poor, the death rate increases even more. The author’s view is that, for the medical system, it’s not worth the trouble to keep such people alive – let alone comfortable.

The key message here is: Anne’s mastectomy was an infuriating experience.

In 1811, the English writer Fanny Burney underwent a mastectomy without anesthesia, right in her Paris bedroom. In 1978, the American poet Audre Lorde had a similar procedure but spent five days recovering in hospital. Anne thought that both were horrible ordeals, but for different reasons. Burney survived the obvious pain and horror associated with unanesthetized amputation. Lorde’s procedure reminded Anne that, today, not everyone who goes through mastectomy has access to basic care.

Everything about Anne’s mastectomy felt aggressive, pushy, and premature. The capitalist medical universe, in which the author found herself, is driven by profit. So even a double mastectomy is an outpatient procedure.

Anne was ejected from the recovery ward and from the hospital before she even had time to go to the bathroom and before she even learned how to empty the drainage bags connected to her body. She told the nurse she wasn’t ready to leave, but the hospital pushed her out anyway.

Ten days after the mastectomy, she was back at work.

After surgery, Anne’s doctor told her the tumor was gone. Six months of chemotherapy and the double mastectomy brought about the result she’d hoped for: a so-called pathologic complete response. Cancer was no longer going to kill her.

But the price Anne paid for her life was incredibly high. So high, in fact, that she says even if she lived another 41 years, that still wouldn’t be time enough to avenge the medical system for how it treated her.

Women with breast cancer suffer at the hands of the very institutions meant to be protecting them.

According to Anne’s surgeon, the single greatest risk factor for breast cancer is having breasts. Anyone with breast tissue, including men, can get the disease. But, of course, women suffer more.

There isn’t just one kind of breast cancer. Triple-negative breast cancer – the sort that Anne had – is the deadliest. It quickly leaves the breast and settles in the body’s other soft tissues, like the brain, liver, and lungs.

This cancer most often strikes black women – people who, according to Anne, bear the brunt of institutionalized racism in medicine. The system doesn’t care about them, so it hasn’t developed a targeted treatment.

The key message here is: Women with breast cancer suffer at the hands of the very institutions meant to be protecting them.

When Anne was declared cancer-free, people told her they’d always known she would survive. It was as if she was strong and special in ways that other people weren’t.

Anne came across an article that described how a woman’s “attitude” helped her survive breast cancer. She points out that she’d never seen stories about how attitudes get people through Ebola, lead poisoning, or dog bites.

For people with breast cancer, breast cancer awareness month – Pinktober – is a season of hell. Everywhere you look, there are pink-ribboned cop cars, pink plastic water bottles, even pink assault rifles. Pink, pink, pink – a pink outpouring of support as superficial as it is cloying. But you know where you’ll never see a pink ribbon? Anywhere near actual breast cancer. In the 30 years since charities began selling pink ribbons, a cure hasn’t been found.

The world’s largest breast cancer charity, Susan G. Komen for the Cure, began in 1982. By 2016, it had raised $956 million. Komen has partnered with Kentucky Fried Chicken to sell chicken in outsized pink buckets. It has also agreed with Baker Hughes corporation to produce a thousand pink fracking drills. But, ironically, fracking is a technology that releases carcinogens into public drinking water – and carcinogens cause cancer.

In 2014, Komen’s CEO, Judith Salerno, took a salary of $420,000.

Much of what we are told about breast cancer can, actually, be called into question. In 2016, research from the New England School of Medicine suggested that the majority of women diagnosed with breast cancer receive unnecessary treatment. Early detection doesn’t save lives. It damages them. It costs us billions of dollars. It causes disability and even death.

Surviving breast cancer is a matter of chance. It does not depend on whether you conform to the cancer narrative.

Anne’s book was never intended for those who are well. But most of us have been sick – and if we haven’t, we probably will be someday.

As a society, we are confused about how we view cancer and cancer patients. We want people who live with this disease to conform to the narrative. We want them to be brave and upbeat – and perhaps also bald. We expect them to undergo chemotherapy, even though its effects can be devastating, and it might not help them at all. If they don’t – well, then, in some cases, people think it’s OK to abandon them.

The key message here is: Surviving breast cancer is a matter of chance. It does not depend on whether you conform to the cancer narrative.

Cancer kills people. So does cancer treatment. So does the lack of cancer treatment. You can do everything right and die, or you can do everything wrong and live. People who die of breast cancer aren’t being punished for moral weakness. The moral faults lie elsewhere. Anne believes that they lie with the industrial world that makes people sick and the medical system that bankrupts them for a cure.

Six months of chemotherapy put so much poison into Anne’s body that she turned from a cancer patient into a heart patient. None of her doctors could figure out just what was wrong. But she couldn’t afford to continue treatment: she had to get back to work. So she put on a wig and walked out from the world of cancer treatment into the world of work, bills, and childcare. Into real life.

Cancer is confusing. To this day, Anne cannot always make sense of her own thoughts on it.

But what she does do is offer a metaphor. Imagine walking along a sun-dappled path. Suddenly, you think you see a snake. But you look closer and realize it’s only discarded snakeskin, limp and lifeless.

In Anne’s metaphor, a snake renews itself as it wriggles and slithers, struggling free from its old skin.

So the question she wants to ask is this: Are you going to be the snake, or are you going to be the snake’s cast-off skin?

Final Summary

The key message in these summaries:

The social expectation of how someone with breast cancer should act puts a lot of unnecessary pressure on women who live with the disease. Breast cancer is neither natural nor gratifying. In fact, it plays right into the hands of health-care corporations and charity institutions. These organizations are often only in it for the money – not to help cancer sufferers.

About the author

Anne Boyer is a poet and essayist. She was the inaugural winner of the 2018 Cy Twombly Award for Poetry from the Foundation for Contemporary Arts and winner of the 2018 Whiting Award in nonfiction/poetry. Her books include A Handbook of Disappointed Fate as well as several books of poetry, including the 2016 CLMP Firecracker Award–winning Garments Against Women. She was born and raised in Kansas, and was educated in its public schools and libraries. Since 2011, Boyer has been a professor at the Kansas City Art Institute. She lives in Kansas City, Missouri.

Anne Boyer

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