My first step as hairdresser was to gather her grey-brown hair into a ponytail and cut it at the base of her neck.
“Just a bob at first,” I said, as if I’d done this before. I made the cut a few chunks at a time, working the blades with my left hand until I held her severed ponytail in my right. I felt horror, but also a small thrill: in my hands was the chopped hair of the person who’d told me I must never go after my baby sister’s hair with scissors. I’d ruined my mother’s hair, but in that strange principality, I’d done something brave. Cutting it was better than waiting for the chemotherapy already working its way through her, attacking cancer and hair follicles alike, to remove it for us. Unlike the hand-off of her body to surgeons we had just met, lab techs we’d never see, and strangers on internet message boards, the haircut was a choice. A way to sidestep the chemotherapy and get there first, on our own ticket.
I evened up the cut, asking her to confer on length in her mirror. She was calmer than she’d been in days, her eyes directed to the window with its view of the parking lot, and, past that, the Organ Mountains just outside Las Cruces. The changes ahead would be magical in their suddenness—new doctors, different hospitals, new tumors appearing almost overnight—but on that day, we met change on equal terms. We were prepared.
My mother had been hospitalized for complications from her debulking surgery, a common first step in cancer treatment in which a surgeon excises all the disease that can be seen and safely removed. For my mother, this meant three “ectomies”: hysterectomy, oophorectomy and lymphadenectomy—removal of the uterus, ovaries, and lymph nodes in one leg. The surgeon-oncologist described her abdominal cavity as spotted with white grains of sand, tiny metastases of uterine papillary serous carcinoma or UPSC, which starts in the uterine lining. UPSC can appear as dots or sometimes in layer form, the way lichen covers a rock. Like ovarian cancer, it is often diagnosed late. Mom’s was identified at stage 4, and had already metastasized to the liver and abdominal cavity. I skimmed clinical studies that put her life expectancy at two years.
Her surgeon-oncologist advised debulking surgery, followed by radiation—a lot of it—alternating with “power washes” of chemo for as long as she could take them. The idea of flushing those white grains out of hiding was appealing, but also sounded caustic. Mom worried, as did my sister Janna and I, that these treatments might be worse than the cancer, and at stage four. . . Our sentences trailed off.
“Yes, quality of life is a factor,” her doctor agreed, but seemed to have no more to say. Quietly, we switched to a female oncologist who told Mom that while she should probably put the idea of a cure out of her mind, the cancer might be fenced into a chronic condition, like a wildfire with hotspots. We liked that idea. This new doctor advised chemo, alone, given the stage. . . By then, we knew how to understand the downward tilt of those sentences.
After the debulking in Albuquerque, she went home to Las Cruces and began chemotherapy but was beset by severe abdominal pain and nausea. The organic food we’d urged her to eat was stopped in her gut and nothing helped—not laxatives or tea or gentle exercise. By the time Janna arrived, our uncle had been in Las Cruces for a week, watching Mom worsen. When it was my turn, I flew from Boston and went straight to the hospital.
Her abdomen was so swollen she looked as though she’d been pumped full of air. To relieve the pressure, they drained her stomach with a gastric tube threaded down her nose. The tube became dislodged during the first night I was with her, and was put back into place by young, inexperienced nurses. Nothing in the cancer books I’d read on the plane prepared me for the helplessness I felt while the tube was placed incorrectly, and incorrectly again, then finally the right way. She wept in pain and relief when it was over.
In Radiology, she was asked to lie face-down on a what looked like a human-sized specimen tray. They tipped her this way and that, taking images from different angles, and I feared that in her weakened state she’d slide off the table onto the floor. The procedure was intimate and humiliating, but it was the only way to determine what was wrong—whether a tumor blocked the intestines, or a section had simply ceased to work.
I left the room for each x-ray and, in between, I stroked her hair, singing the only song I could think of, “I’ve Been Working on the Railroad,” slowed to lullaby speed. I felt ridiculous, and mildly sick myself from the tilting table and the sense that I was assisting in her degradation.
“This is torture,” she whispered, and I wanted to say They’re only trying to help you, but I didn’t. Even now, it’s difficult to think of the radiology tech attempting to lighten her mood with banter until I made the throat-slashing motion for no more. I’d rather think of the cheerful haircut, but it’s unfair to privilege one memory over the other. Both are true. Both form the story of what happened to my mother.
I have a photograph of Mom on Easter Sunday in 1948 or ’49, when she was about six. She and her mother are dressed for Mass, smiling in front of a large, flowering tree. My grandmother is not yet thirty and looks like one of the Andrews Sisters with her smart hat and gloves. Mom is wearing a straw hat, her hair in braids.
I know, because she told us often, that those braids were woven mercilessly, her mother raking through the tangles while she sat, crying, on a kitchen stool. When she had daughters of her own, Mom cut our hair into Mia Farrow pixie cuts. More than once I was mistaken for a boy, but when I complained she said, “It looks darling. And it’s better than what happened to me.”
After her diagnosis, I cut my hair short again, but the features of my adult face—prominent nose, weak chin—are not the elfin sort that look delicate with short hair. It was practical, that’s all. I had a five and seven-year-old at home, and trips to help care for Mom. I had no time for hair.
We took pictures of Mom’s haircut with my phone. She was happy with the way it looked, and happier still that I’d put down my scissors and wouldn’t be using the clippers yet. She saved her ponytail in a Ziploc bag.
Mom identified with her hair. Patrons and co-workers at the library where she worked sometimes called her “Braids.” Tossing the ponytail into the trash would have been like throwing out a finger or an ear, but as soon as it was sealed in the bag, I had a powerful urge to throw it away. Discarding it would be an act of faith that the hair would grow back, that we were making the best of things, staying open to change. We were not simply walking through the steps that would lead to her death.
By the next morning, her hair came out with a gentle pull of the comb so I buzzed it to two inches. Then one. By mid-afternoon we decided it was time for boot camp—Private Starr, reporting for duty—and I took it down to a quarter inch. The nurses were impressed. Mom tried on her chemo hats for the first time, one black and one white. I told her she looked like a cast member of “The Crucible,” and she laughed. I felt bold. Brave enough for anything.
What seemed brave to me might have seemed more like bravado to my new friends on the message boards, but they were kind and accepting. Or I imagined them so; these were people I knew only through words and thumbnail pictures, but in my mind they were a sort of counsel of older siblings who could show me the way. I imagined the message boards as a kind of ladder made of the Kubler-Ross stages of grief: denial, anger, bargaining, depression, acceptance. With all these rungs below them, the most advanced posters sat pillowed atop a California-style Zen, dispensing wisdom to newbies like me. Down where I swept up strands of Mom’s hair and she napped, we didn’t know bravery from a river in Egypt.
“Is this carpet bombing of radiation a good idea?” I asked once, incredulously. No one answered. I wish I’d known better than to say carpet bombing to people undoubtedly facing such treatments themselves. Here’s how I read their silence: They were letting me climb my own ladder. Letting me think, for a while, that I could beat cancer with my Walmart clippers.
Because she was geographically closer, my sister spent more time in Las Cruces. She was the nearest moon and I was a satellite with a larger, more elliptical orbit. At home, I was up to my neck in chores, family and work. My notebook entries from that time are scraps:
“It is selfish to write about her when I could be talking to her instead.”
“It is selfish to tell her story as if it is my story.”
“If I don’t write it now, sadness could make it impossible when she’s gone.”
Home and New Mexico were separate lives. Every six weeks or so I’d come back to her apartment or the timelessness of the hospital where I moved in a peaceful stupor, shuffling from cafeteria to bathroom to chapel. I never ventured out for long because, if I did, the languor was snapped in two by the brisk visit of a specialist we’d been waiting to see for days.
As scaffolding for the hours, I invented routines, like parking Mom’s car under the same leafless tree in the parking lot. One early morning I took a picture from this spot, with the hospital and dawn sky behind it, pale blue flushed with pink. It felt like photographing a new home. In Boston, my family carried on without me, but here I had a separate life, centered on this parking space and my newly adopted routines: the local NPR station on the car radio, the route between mom’s apartment and grocery store. I am really quite adaptable, I thought as I locked her car and walked back into the hospital, past Emergency and Reception to my preferred bank of elevators. She might never leave, but neither did anything have to change. We could simply move at this incremental pace, endlessly dividing the distance between now and whatever came next.
In February, the three of us were in her apartment when the oncologist—another one—called from Albuquerque. PET and CAT scans revealed progress of the cancer in several places, including her liver. The oncologist said, “I’d like to see your mother move closer to one of you.”
“To get different treatments?” we asked mechanically.
“No,” she said. “Because of what the cancer is already doing.”
Each of us took a turn on the phone, asking the same things, receiving calm versions on the same answer: It’s time for her to move closer to one of her daughters.
Her bedroom was bright with New Mexico sun even with the shades drawn. We were here to receive this information together, yet, now that we had it, we didn’t know what to say to each other. The long naps of hospital time were over and we needed to move her, but how could we possibly do that? Janna lived in Tacoma, which was far more affordable than Boston and an hour’s drive to Swedish Hospital in Seattle. Mom was willing to move, but how could Janna manage Mom’s care and keep up with her job? We dove into research on retirement villages in Tacoma and Janna applied for family leave.
Mom’s symptoms multiplied. We tired ourselves by worrying that every little headache meant that the cancer had stormed into her brain.
And then, one day, it did mean that.
The news of eight brain tumors came days before her move from New Mexico to Washington and put us into a stunned state of rapid planning. The tumors explained her recent headaches and fever. And it meant that a critical border had been crossed—the blood-brain barrier, where chemotherapy cannot reach and radiation is especially difficult. It was the worst batch of news we’d received yet, and there was no time to contemplate, or panic.
The morning that movers packed her belongings into a truck, she was in Albuquerque having treatments to shrink the tumors. Janna took her from Las Cruces to Albuquerque by car for the radiation, then from Albuquerque to Seattle by plane and, finally, by car again, from Seattle to her new apartment in Tacoma—feats that made a haircut seem trivial.
Then, somehow, there was steady ground again. The radiation paused the tumors in their growth. Mom unpacked her boxes in a retirement village overlooking Commencement Bay on the southern end of Puget Sound. Janna became the Maypole around which all logistical ribbons were twisted: driving Mom to chemo with help from Seattle relatives, finding her a dentist, pharmacy, grocery store, bank and post office in Tacoma. I came from Boston as often as I could but increasingly I was background—sometimes even an impediment—to a system that ran largely without me.
When her blood levels of CA-125, a marker for certain cancers, shot higher than ever and stayed high, it took me seconds to confirm what this meant. I was at home at my desk, and Mom was in Tacoma, under the care of a yet another oncologist in Seattle. This doctor was soft in manner, but did not prevaricate: the available treatments, including some of the very latest, had been tried. The risks of treatment now outweighed the potential benefit. As Janna reported this over the phone, I felt fear rear up in me like a startled horse. I put the phone down and pulled books from the shelves, but I was too frantic to read, so I went back to my desk and emailed two cannabis dispensaries and a residential hospice in Tacoma.
My mother worked in libraries for decades. She viewed information-gathering as responsible work, and a preventative strategy. Chance favors the prepared. Books on my shelf, chapters in the library, Internet links beyond number all represented tasks. A focal point. But I had reached the page where one reference did not lead to another. I knew that my job as researcher, quest leader, and hospital beautician was over.
Even before I arrived in Seattle, I was aware it was the final stop. Her last procedure—a shunt to drain her liver—was successful, but in placing it, they observed a massive tumor between her liver and pancreas. Janna told me that the pain had kept her from sleeping for days. There was also something wrong with her right eye; it didn’t focus to the same point as the left. The doctors said it was probably a tumor pressing on the optical nerve.
This was not followed by recommendations. It was just information.
All the way from Boston I nursed a fear that my mother wouldn’t recognize me, but when I entered her hospital room she looked up and said, “Kristen.” I blurted out what I’d rehearsed on the plane: “You’ve taught me to be a loving mother. You always made us feel surrounded in love.” She reached up through her tubing and said, “Come down here so I can surround you.”
I thought the end would be different.
I thought there would be a time—short, but measurable—when she had left her mind but not her body, and decision-making would shift clearly to us. But that is not how the pain medication worked. It took her partially, in some moments but not in others. We knew from her medical directives that she wanted a “Do Not Resuscitate” order, but this could only be enacted if we skirted the rules and misrepresented her state, or states, of awareness. When we asked her if she wanted us to make arrangements to move to hospice, she did not want to be pressed for an answer. “I’d like to go home and think it over,” she said.
She was given Dilaudid, a potent opioid, by IV. Her pain eased but she slipped backwards in time, asking if her friend Kathy from Taos was coming to see her (Kathy had, months before). Later, she seemed to think that the nurses would be training her to use the hospital’s fire hoses. She told Janna she wasn’t sure she was prepared. Prepared how? Janna asked.
“Well,” she said, looking puzzled, “will we need a costume? Or a partner?”
For days, we were in that half-light with her, chairs pulled up to her bed as though she were a campfire. The part of her most available to touch, through blankets and tubing, was her head. Her hair had grown back about an inch, with a soft but unfamiliar texture, like frayed acrylic yarn.
Our tower of the hospital faced an identical tower in which each room was a cell of light. I imagined from the outside we must look like figures in an Edward Hopper: two women seated, one lying down.
A friend, Masha, texted to ask if Mom had any favorite flowers.
“I’m sorry, I don’t know,” I answered, adding feebly: “Anything will be appreciated.”
Mom was past asking, the Dilaudid too thick for her to make sense of the question. It was as if we’d wrapped her head in gauze to help her see. Facts beyond who am I and who are you were adrift: time, location, objects. Even her hands. I saw her staring at them with a soft, bemused smile.
“Well,” she murmured, “these might be useful.”
I don’t think she had a favorite flower, or quite trusted the notion of favorites. If I’d asked her to name one, she likely would have clarified: What season did I mean, and what location? Was I asking about color, or scent, or hardiness of character? I can tell you some of the flowers she grew, if attention is a grudging sign of favor. They’re what she would have called “Plain Janes.” A Plain Jane is an honest figure who knows her value, but never preens.
Mom grew potted geraniums in Spokane with stems like arthritic fingers, and cornflowers in the garden of that house. She planted hollyhocks in the side yard that didn’t come up until years after we sold the house. Equally aggravating were lilies of the valley in Salt Lake, which she did not cultivate so much as submit to in a yard where little else would grow. After her divorce, she moved to the New Mexican desert, and loved the tough flowers that grew there, the tall white yucca, and brief blossoms of prickly pear.
At her bedside in Seattle, I began a list of things she loved: bagpipes, burned cookies, shape-note singing, brightly colored socks. Later, I asked family and friends to add to the list, growing it as if to prove how much she loved life—her specific life. I think Mom would have enjoyed the list, even as she spotted the exercise: A list is not a life. A life is not a collection of favorites.
Masha sent yellow roses with baby’s breath. Mom could barely see, but understood that flowers had been brought and asked, “Did someone tell her which flowers I like?” She was asleep again before I could think of an answer.
She returned from deep dives into sleep to short periods of alertness, asking for the time or a sip or water. Once, she woke with an indignant question: “What have you done with my blue folder?” There was no folder, but we pretended to look. She slept again, then woke confused: Were we ready to check out? Were the kids in bed? Was it spring?
Her acuity could return suddenly, as the medication ebbed, and when it did, she was clearer than clear: no DNR, no hospice. She did not even want to cancel her appointment for chemo the next day. In hushed voices, the hospital staff led us through the options. If we wanted hospice, they could help us find a facility with space, and an ambulance for transport. If we took her home, the retirement village in Tacoma had to have a skilled-nursing bed available. Mom was tired of being asked.
“I agree it’s something to consider,” was all she’d say.
Her oncologist made a visit. To his gentle suggestion that she ease off treatment, my sister added, “I think maybe we’re all coming to the same page?”
“But not the same line,” Mom answered crisply.
The doctors told us that without a DNR, they were required to attempt resuscitation if she “coded,” despite the vanishingly small chance that she would return to consciousness and the near certainty that it would cause pain.
Palliative care is about choice. No one should assume that they know what the dying person needs or wants, so you ask questions and provide options. The Pain Button was created so that the patient can give herself a bump of medication in addition to the IV drip and no one but the patient is supposed to use it. This is complicated when the patient is weak and hallucinating from medication she’s already had, yet appears to be in pain. Then questions are, at one level, a way of seeking information, but also a path around the rules. Or rather, through them: Mom, are you in pain? Do you want your Pain Button? Shall I put it in your hand for you? Here—it’s in your hand. Can you press the button? I can put your finger on the button. Do you need me to press it for you? Do you remember what this is for?
Are you in pain, Mom?
Mom?
In my notebook was a line from a memoir in which the author describes his grandmother’s last breath, “like a raft pushed gently from the shore.” And it was, in fact, something like that when my mother died on the 23rd of November, just after 4:00 in the morning.
Her brother, Lars, and his wife Margaret had come to see her the night before. We played recordings of Mom singing with her brothers on her 70th birthday— “Santa Lucia,” “Lil’ Liza Jane” and “Poor Man Lazarus.” Lars said he wanted to sing her one more. He sang “Ol’ Man River,” in a quavering baritone, and wept. Then they went home.
Janna and I slept to the sound of her deep, open-mouth breathing and in our sleep, we both registered a change in the depth and pace of her breath to something more like panting. Janna went to her. At the touch of Janna’s hand on her shoulder, Mom turned her head, but her breathing remained the same. Janna stayed for a few minutes, then went back to her cot.
The silence woke me first.
After hours of listening to her ragged breath, amazed at the body’s insistence, the quiet was stunning. I gently woke Janna and we went to Mom’s bed. No breath and no pulse.
The silence around us was a medium. A new form of air. My mother’s there, I thought, but I will never again see her alive. She is dead. Yet her eyes were slightly open. Did that mean she was awake in the moment of her death, and if so, afraid? My children often ask me not to leave their room until they’re asleep. I think my mother was beyond such a thought when she died, but her half-open eyes meant she didn’t die in her sleep, exactly. She died in ours.
A raft bobs in the water, lifting a little as it’s freed of its moorings and then, before you recognize the strength of the current bearing it away, it’s a dot on the horizon. And then it’s gone.
The first time I held my mother’s hair in my hands, I thought about Walt Whitman’s answer, in “Song of Myself,” to that child who comes to him with fistfuls of grass:
A child said, What is the grass? fetching it to me with full
hands;
How could I answer the child?. . . .I do not know what it
is any more than he.
Maybe it’s God’s handkerchief, Whitman guessed. Or the flag of my disposition.
And now it seems to me the beautiful uncut hair of graves.
I thought of Whitman again when we emptied Mom’s safety deposit box at the bank and found, tucked among insurance policies and jewelry, the bag of her hair. The sight of it gave me a quick pulse of fear, but at what I didn’t know. The hope that it might grow? The certainty that it wouldn’t?
Her hair did not bring me comfort. I was washed, instead, in unanswerable longing. A child’s longing for her mother. A mother’s longing for her own life.
Sometimes, when I’m standing at the stove or doing some other small, household chore, like hanging a child’s coat in the closet, I feel a sudden longing for her, followed by the piercing thought that I can’t have her. And for some period of time after, it’s as though I’m sitting in a boat on a quiet lake, staring into space and feeling the slight movements of the water. Once I’ve reabsorbed the idea of her absence, in the seconds or minutes this takes, I come back to stirring or straightening or whatever task had occupied me. I return to the world motherless, but quieted, again, by the fact of it.
