The passing cars move the air in waves that push against the side of the car I am driving, making a soft whup whup as each one goes by. The car is a Buick, wide bodied, low to the ground, solid in a middle-aged sort of way. I have tilted the large steering wheel up, so that I can more easily lean across the arm rest and place my hand on the small of my sister’s back as she leans out of the passenger side. She is vomiting. I can hear the retch and the splash above the noise of the cars going by, above the pounding of my heart. She is bent double and to the side at her waist, and I can feel each facet of her spine as she strains forward to vomit again. We are on our way to the hospital. It is Christmas Eve 2012. The air in Atlanta is tepid, neither warm nor cool, and the pungent-sweet smell of the car’s exhaust pulses into the car, in rhythm with the other cars’ passing.
My sister unhinges herself, and in one smooth motion flings herself back upright into the seat and neatly flicks my hand from her back.
“Mucus,” she says. Her breathing is labored, and there is a sheen of sweat above her eyebrows, on her upper lip. “And whatever I just tried to drink.”
A truck passes by this time, buffeting the car, making it sway, turning the whup into a thud and a squeak. The smell wafts up into the car. We both say, “Orange Gatorade” at about the same time. And we laugh, a little, and I wipe her face with the wet cloths we keep in the car and she coughs some more, then says, “OK,” which means that I can pull the car back onto the road and begin driving again.
What I don’t say is the other thing I smelled, which was death.
Christmas Eve in a hospital emergency room is like this: It’s always freezing. There are the hollow-eyed interns and residents, swaying on their feet from fatigue. There are nurses, who seem to move in a blur, always running toward someone else’s cubicle. People are sometimes referred to by their last names but other times by their conditions. This evening on either side of my sister’s cubicle there is the stomach pain and the headache. The supervising nurse is concerned that one or both might be drug seekers. I think that most of those here, like my sister, did not plan to get sick on a holiday. Two cubicles down is the cardiac, who is moved to ICU; his place is taken by a new arrival, a nursing home resident who fainted. She looks like a giant Q-tip, her head bundled in what seems like yards of gauze, her stick-thin body a line drawn between the two muscular EMTs on either side of the gurney. As the minutes and then hours go by, the ER fills and soon the EMTs and triage nurses are lining people up against walls, in spaces that are not meant to contain people. Most patients and people with them avoid eye contact, each one trying to hold onto at least a semblance of privacy, although one small woman—it’s not clear whether she’s a patient or a companion—wanders from one end of the large room to the other, saying, “Praise Jesus” and “Have a blessed day.” Just outside our cubicle is a young man who speaks an incoherent blend of English and Spanish and who is so high he doesn’t seem to notice the splint and the three huge ice packs anchored to his leg. He jumped off a third-floor balcony.
A phlebotomist appears, the vampires, as we call them. This bloodletter is a tall, plump man the color of gingerbread. He looks at my sister, gray, skeletal, retching again, and takes a deep breath.
She has become accustomed to that look, rasps, “I have a port.”
He takes another deep breath, says, “Can’t use it.”
And we all take a collective breath, wondering how many sticks they will need to draw the blood for the CBC and the blood gases and BUN-Creatinine, one small vial for each. And the big show, the four large vials—each one shaped like a Tabasco sauce bottle—that must be drawn from different sites on the body. Over the past months, the words and labels and acronyms of the medical-oncological complex have become a second language, an array of prefixes and suffixes that narrate the story of her body: pneumo– (lung), –itis (disease or inflammation), carcino– (cancerous), –oma (tumor). Over the next few hours, my sister and I learn more vocabulary: dehydration, laryngitis, dyspnea. My sister notes that they all basically translate into “feels like shit.”
At midnight, I say to my sister, “Merry Christmas, Ms. Kay.”
She says, “Ho, ho, ho.”
The cultures—all that blood in the Tabasco bottles—will need at least 12 hours to grow. After my sister receives a breathing treatment, and the lab has determined that her white count is just high enough for her to be discharged (fewer germs at home than in the hospital), we prepare to go home. The fog is so thick that I can barely make out the exit ramp from the parking garage, and I am for a moment utterly disoriented, partly from a lack of sleep, partly from the fog and its removal of any familiar landmarks, partly because I have not shifted my internal map from my home in Connecticut to hers in Georgia. But I find the car, return to wheel her out. She puts her arms around my neck and I half lift her onto the front seat. She says “Ow” as I wrap a blanket around her. It’s more than 70 degrees, even though it is past midnight, but she is always cold. I think it is a generic “ow”—one of many that make up her life—until we are stopped at a brightly lit intersection and she shows me the raw strip of skin. In his hurry to get her out the door, the discharge nurse pulled tape from around her port and ripped off a piece of skin the width of a finger. It oozes angry red.
“We need to go back; that needs a dressing.” I am gripping the steering wheel so hard my hands tingle, then go numb.
“No,” she says. “You’ll take care of it at home.”
I am awash in feelings I do not know how to navigate. My sister is one of the most stubbornly private and independent human beings ever created. But over the past months, she has quietly delegated decision making and care giving to me, saying to whatever caregiver we are working with at the moment, “Talk to my sister. She handles that.” I am awed at the gift of her trust, terrified at the reality of her dependence. And I am sickened at the sight of that wound, the knowledge of how vulnerable she is to infection. So enraged at the callous attitude of the nurse (she tells me he said, “Oh just put a Band-Aid on it”) that I know I would be capable of hurting him.
Homicidal. From the Latin homo (human) + cidium (killing). But I really don’t want to kill him. No. I want to break the fingers that ripped her skin. I would do it slowly. I would keep going, ten times, no matter how many times he begged me to stop.
It turns out that we go back to the ER anyway. Christmas Day, a few hours after lunch, the phone rings. I am expecting it to be my nephew, or a neighbor, or maybe an aunt or uncle in Florida. It’s a bright voice, young, who identifies herself as a hospital employee and asks if my sister is at home. I think this is a stupid question. Where else would she be?
“She’s here, on the sofa.” We were up and down all night, trying to get her comfortable enough to sleep, carefully placing Bacitracin and the softest nonstick bandage we could find on the raw strip above her port. Trying to calm her raging thirst. Helping her into and out of the bathroom. Holding her head when she vomited after a bout of coughing. Her voice is hoarse, and her breathing is labored. When I mention this, my sister says, “I have lung cancer, dumbass.”
The bright young voice continues, “How far from the hospital are you?”
I tell her, and she says, “Bring her now.”
I say, “Excuse me?”
She says, “Bring her now” and gives me another new word, sepsis. From septic (putrefactive). A toxic condition resulting from the spread of bacteria. The cultures came back from the lab in record time.
The bright voice continues, “If you are not able to bring her in, we will send an ambulance.” She tells me, in the kindest way possible, that yes, she understands it is Christmas Day and, no, it can’t wait.
My sister musters a nanosecond-long, pro forma objection, then says, “Let’s go.” With an irony only she can muster, she adds, “Well, damn. I thought I felt like hell.”
She has no idea.
Hell, in this case, has a name: Pseudomonas aeruginosa, a bacterium found practically everywhere—on the ground, on human skin, inside the human body. It’s like salt in the sea, a constant and natural presence in the vast landscape of microorganisms. Natural—and benign—except when you are a person with cancer. Except when you had a chemotherapy treatment six days earlier. On the seventh day God may have rested, but on that day, in the chemotherapy creation story, the treatment’s chemical brutalizing of the body’s cells, the good and the bad alike, is at its apex. In my sister’s case, the cumulative effects of chemotherapy have crested and toppled over the other side.
The lack of white blood cells allowed the pseudomonas to “bloom,” as they say, in my sister’s bloodstream, to have a reproductive surge so strong that the bacteria and their toxic byproducts have become a lush and bountiful component of her blood serum. The most bountiful component, as it turns out. She has virtually no white cells, which have plummeted from the marginal counts of the night before to life-threatening levels. As the oncologists and hematologists will discover in the next few hours, she has no red cells either, because her bone marrow has shut down. –Penia (lack of). Neutropenia (no white cells). Thrombocytopenia (no red). The pseudomonas, alive and unchecked, is the only thing that is growing.
I imagine two Tabasco-shaped bottles of wine, labeled “neutro” and “thrombo.” I wonder if there is a –penia word for “no Christmas” or “no sleep.”
I wonder if there is something really wrong with me, because even in the middle of all this I marvel at all these words, their compact elegance, the way they do not squint at what is happening. This is more than I can say for myself. For the next three days, I put on blinders about anything larger than the moment, narrow my gaze, respond to each development as it presents itself.
Kidney failure comes first. I have returned to my sister’s isolation room, after a few hours away. Our mother is disabled; my sister has lived with her for the past few years, to “keep her going” as we politely put it. A large sign neutropenia protocol covers the door. Anyone from that floor who enters must put on gown and mask, slather hands with industrial strength hand sanitizer; anyone from another area of the hospital must also slip on paper footies. I do all this.
When I enter the room, I wonder who the hell is in my sister’s bed. I search for the fine lines of her cheekbones, the small square bone of her chin, the chin that she has stuck out on my behalf more than once. In her bed is this…something. Hideously bloated, eyes lost in swollen cheeks, face blotchy and discolored. When I say her name she opens her eyes, surveys my face, says, “Feel. As bad. As ever. Felt…” she stops for several labored breaths … “In. My life.”
The rest of that day I lie. To myself. To my nephew. To my mother. Yes, she is very sick. Yes, they are giving her antibiotics and meds to make the fluid go down. Yes, she can talk. Yes, I will call you. I do not want to be alone with her, with the oxygen and the alarming monitors and the shadows that loiter around the edges of the room. I ask the nurse, who is young, efficient without being rushed, who although swathed in paper gown and mask and hat, always gently rests a gloved hand on my sister’s shoulder as she explains the IVs and the tests and the erratic blips on the monitor. They have had to fetch a blood pressure cuff from the pediatric intensive care unit, my sister’s arm is so thin. Every few minutes it inflates, clicks, deflates, clicks, inflates. I ask the nurse if I need to call someone, if this is the end.
She looks at my sister for a long moment, says, “If she responds to the antibiotics soon, she can pull through.” My sister is awake, and she is staring at the television, but if she hears the nurse, she gives no response. I ask the nurse if her son and his wife, and her grandsons should come. She asks the age of the boys, says, “They’re too young. Not allowed on this floor.” I note that the grandkids have had colds, though neither her son nor his wife is sick. She shakes her head, “The adults could be carrying. Let’s wait a bit. She just can’t afford anyone else’s germs.”
All this conversation takes place with both our mouths covered by masks. Our words are muffled, gauzy. When I exhale, I steam up my glasses. After a while I take them off. I can see enough to find the bedpan and the emesis basin and the tissues and the cool compresses, and to put them where they need to go. My breath is beyond bad. To my horror my sense of smell seems to heighten rather than dull. I detect pungent, medicinal whiffs of antiseptic cleaner left over from the shift before. The rancid remnants of a fried meal on an aide’s shirt, even underneath the layer of isolation gown. The acrid, chemical urine that is waiting to be measured, in the container perched atop the commode. The mixed smell of my own sweat and fear, sharp and cheesy-ripe.
My sister’s breath is worse. Sickly sweet and fetid and so much like carrion that it takes every ounce of willpower I have not to gag. Lab techs call pseudomonas “the diagnosis you can smell”; its distinctive, nauseating odor permeates the lab when cultures are growing.
The body also stinks when the kidneys fail, as the acids and salts the kidneys aren’t excreting make their way through the skin. The body stinks when the lungs contain portions of irradiated, necrotizing tumor and are filled with thick green mucus. The nurse says, “It’s ironic.” She is referring to the latest test results. The largest lung tumor responded well to the radiation and chemo, shrinking from more than eight centimeters to five. But as it “unpacked” and became less dense, it spewed more toxins. So, between the chemo and the pseudomonas and the crumbling tumor toxins, my sister’s kidneys are taking one hell of a beating. The nurse adds, “Antibiotics are a bitch for the kidneys as well.”
I wonder aloud how much more my sister and her kidneys can take; the nurse says, “You’d be amazed.” Then, quietly. “Most people with cancer don’t die from the cancer, but from a complication. Chemo. Secondary infection.”
My sister blinks her eyes rapidly, rouses up, croaks, “Damn bug. Gonna kill me.”
Her sudden motion and the coughing fit that follows set off every alarm on the monitor. A herd of nurse footsteps gallop down the hall. They all gather around my sister, who coughs, vomits, says, “Oh. Fun times.”
I must leave again for a few hours, to drive to our mother’s house and fix her something to eat, help her get ready for bed. As I get ready to leave, the nurse directs, “Don’t come back tonight. Go sleep. We’ll call you if anything changes.”
And they do, early the next morning. I hear “heart” and “ICU” and “come.” Over the roar in my ears I quickly make our mother’s breakfast, assemble her lunch and put it in a cooler that she perches on the spare pillow of her bed. Call the neighbor, ask her to check in. Drive. The night before, in the few hours of sleep I managed, I dreamed of driving into the hospital and losing my way. Even in the dream I tell myself that this is impossible: I have visited many people there. A good friend died there, years ago. I had surgery to repair my spine there. Three years ago, my mother was there for a month. I know this hospital. But in the dream I drive endlessly up and down the parking lot ramps, never arriving, never leaving, never stopping, just looping around and around and around.
The ICU is a bright, barricaded war zone. It takes me three tries to get in. Once I am in, it takes a few more tries to find the nurse who knows where my sister is. I put on the gown, the mask, wash my hands, add a dose of hand sanitizer before I go in that stings the raw patches of cuticle on each hand. The nurse stops me. “Her heart is very…” She pauses, her eyes rapidly scan my face. “Uneven. Her body is under great strain from the infection. We are trying to keep the heart from damaging itself. You understand? We think the infection is responding. We are trying to keep her going so that she can continue to fight.”
A totally different body greets me this morning. The fluid has dissipated. My sister’s kidneys have shifted into overdrive; she has peed buckets of fluid, so much so that she is dehydrated, and her skin sags against her cheekbones. She has quickly lost the few pounds that she had gained before the last chemo treatment. Her skin is dusky, bluish gray, except for her chest, which is the color of burned toast. In the ICU they don’t bother much with clothes, which become a nuisance, and so my sister’s legs are covered with a sheet, a hospital Johnny draped crookedly over her chest, which is alive with wires and electrodes. Tachy– (too fast) + –cardia (heart). Her heart rate is 180. She opens her eyes, sees me, says, “Hey.” Her heart rate goes to 200, and alarms go off, so loud that we both jump. The monitor flashes “220.” I have to look away.
The nurse bustles over, orders, “Don’t talk.” I am not sure whether she’s saying this to my sister or to me but I swallow all the questions I want to ask and stand on the far side of the bed, away from the beeping monitor and the hissing oxygen. The nurse injects something into the IV. I put my hand on my sister’s arm, say, “I’m here. It’s OK. Rest.” Gradually, her heart slows to 170. Then 160, 150, 140, 130. Still tachycardia, but at a speed she can live with. Her skin lightens, just a bit, and her breathing becomes more regular.
When I know she is asleep, I go out into the hallway and cry. That must happen a lot here, because no one approaches, or reproaches, me. I use the tissues that the nurse quietly left on the wheeled cart next to the door. I go out to the waiting area, call our mother. Lie. I don’t know why except that I think telling the truth doesn’t make any sense. My sister’s heart will either beat itself to death, or it won’t. Either she will survive this, or she won’t. I call my nephew’s cell phone, get his voice mail, leave a quick message. I tell him that his mom is in ICU but seems to be stabilizing. I try to make my words careful, but not too careful. Even though he doesn’t say it when he calls later, I know that he doesn’t want to come. I don’t want him to come, either, because that means we can no longer hide behind “She’s a fighter. Tough as nails.” If he came here, we would both look at her. We would both have to say, “This is happening.”
My sister was diagnosed in June 2012. She and my mother called the evening after the biopsy results. They were in Georgia, and I sat in my hotel room in Louisville, Kentucky, where I was working for a week. Mostly my mother talked: There was a large tumor, and the biopsy had confirmed that the mass, which the x-ray had described as “highly suspicious for neoplastic activity,” was in fact cancer. Adenocarcinoma. Adeno– (glandular) + carcino– (cancer) + –oma (tumor). Stage 4: “Cancer that has spread to the limit of what the assessment measures.” I looked on the Internet as we talked. No, there is no stage 5.
I sat in the chair, looking out the hotel window at the Ohio River, watching a tugboat churn the water, pushing a barge upstream. As the body goes, plasticity can be a good thing. In 2010, the doctors had assured my partner and me that, even in adults, the brain is very plastic. It can change. It can heal. It can create new neural pathways when the old ones are damaged, in her case from a stroke. One small prefix can make a lot of difference. Plasticity refers to the body’s extraordinary ability to heal itself. But the “new” changes all that. Neoplastic, new changeability, means that the cells’ ability to grow and change, to repair themselves, has run amok. The proliferation of cells starts up but doesn’t know how to turn itself off. The cells grow and grow, a reproductive frenzy. Too much of a good thing.
My thoughts, scrambling to find a soft, safe place to land, call up the saying by Mae West, “Too much of a good thing can be…wonderful.” I am trying to listen to what our mother is saying: biopsy, oncologist, CT scan, oxygen saturation rates. But mostly I am observing myself, as if from far away. The tugboat labors upriver, the water at its stern café au lait, covered with yellow-white foam. The froth is the same color as Mae West’s hair. Had we seen Mae West on the Ed Sullivan show? Our parents wouldn’t have let us watch any of her movies. My sister would try to imitate West’s slinky walk, poking her skinny girl hips provocatively to each side. I didn’t dare try the hip thing, but together my sister and I mimicked Mae’s throaty “ooh, ooh”—until our grandmother told us to go outside and for goodness sake to stop making those nasty noises.
My brain still has plenty of plasticity, apparently, at least in its ability to feint forward and back. Each new piece of information, each new word, is a small missile aimed at the core, and my flexible cells tumble over one another to avoid meeting all of these words head-on.
I tell my friend Linda all this, the next day in Louisville when she and I meet for dinner. I wonder aloud what kind of person remembers Mae West jokes or contemplates river foam and tugboats when she should be listening to her sister’s treatment plan. Linda lost her sister the year before, to brain cancer. I never got to meet her sister but Linda tells me that we would have gotten along just fine, both of us being confirmed—she pauses, sips her wine, searches for the word she wants—spiritual nonconformists.
There are not too many people you can have dinner with who will openly, nonevasively, talk about loss, about dying. As we talked, as we catalogued the layers of loss, she said, “Time heals all wounds” then quickly added: “Kairos, not chronos.” Chronos is sequential time, clock time, the 60 minutes between 1:00 and 2:00. And it’s what most people think when they say “time heals all wounds.” Wait long enough, grit your teeth, put your head down, the pain will go away, or at least subside. But kairos means “the supreme moment”—the exact right time. It is a moment in time that something extraordinary happens, and the extraordinary is not fixed but instead depends on the person experiencing it.
Her sister’s dying, she tells me, was filled with plenty of miserable chronos. But it was also suffused, she says, with kairos moments, most of which she could not perceive until much later. She reminds me that the reactions I have labeled “bizarre” are perfectly fine—one reason I love her is that she almost never uses the word “normal.” When we are faced with the inexplicable, she says, we try to explain it, even as we understand somewhere inside that such explanation, such sense-making, does not exist. It does makes sense, she adds, pushing a portion of our ridiculously over-ordered dinner toward me, that I would try to manage all this through words, my anchor in this thing I call reality.
We agree that the reality of watching someone you love grapple with cancer is like a film reel, played at the wrong speed. Like you’ve been sentenced to living in the ER: all noise and surreal brightness. I tell her of a novel by Rosellen Brown, Before and After. The narrator is a woman whose son is charged with murder. She notes how, after that knowledge is inserted into her world, she sees everything in terms of before and after: Before, when her son was just her son, before she knew of the accusation. After, as she grappled to navigate the new words that attach to him: suspect, batterer, defendant. After, all those words utterly shift your world, dislocate your place in it.
You forget, after a while, that there was an untainted “before.” You have no idea what to do with the “after.”
February 2013, eight months after my sister’s diagnosis. As I prepare my sister’s memorial gathering, I decide to make a collage. I give thanks, for once, for our mother’s compulsive recordkeeping, as I am able to find pictures of my sister from infancy until Thanksgiving weekend 2012, which was also her 55th birthday, the next to the last time she left the house other than to go to the hospital. As I place the pictures on the cardboard display, I realize how much of the “before” I have forgotten over the last months of doctor visits and long hours in waiting rooms and ER trips and hospitalizations. At four months my sister is a butterball, Y-shaped creases in her thighs, the softer outlines of her firm chin beginning to appear. The sepia tones of the early photographs don’t show her deep blue eyes, but they do reveal the thick cluster of lashes that surround them. Her hair is so blond it’s transparent. In some of the pictures our mother has taped a thumb-sized bow to her head.
Our mother has arranged elementary and middle school pictures in neat rows, her tiny handwriting below each set (taken fall and spring): Kay, first grade, age 6. Kay, second grade, age 7. There is a gap in high school, when my sister decided not to attend school (grades 10 and 11), and during what would have been her senior year, 1975, enrolled in the alternative high school. She made up three years of work in nine months and graduated only a month later than her high school classmates. The Alt-High, as everyone called it, didn’t take yearly pictures but they did provide graduation photos. My sister, in that photograph, is smiling proudly, head at an angle, thick brown hair just touching her slender shoulders, glittery blue eye shadow all the way to her eyebrows.
I think how the pictures show the passage of time, the shifting of self that happens as we grow. I match the life events I know with the changes in clothes, the hardening of her expression. I always forget how young she was when she had her son; in those pictures he is a small male clone of her—thick cap of blond hair, opinionated chin, deep-set and thick-lashed blue eyes. There are two pictures of her first marriage; in both, she and her husband are poised to cut the wedding cake. During her second marriage, she allowed her hair to grow down below her shoulders. In those snapshots she is wiry and thin, a cigarette dangling from her hand, and she faces the camera with a look that is part contempt, part flirtation.
There are two pictures from July 2013, a month after she was diagnosed. In one, she is sitting at the edge of the pool, holding her youngest grandson as he stands on the steps into the shallow end. In the other, she is seated on the floor, in a row with her son and his two sons, the youngest on her lap. Four sets of piercing blue eyes. Four chiseled chins. Four lopsided smiles. Her oldest grandson helps me put the pictures on the board, goes back to the album, selects a couple more to add. He calls her Kay-bird, not Grandma. Later, he asks me, “Did she know she was beautiful?”
And I can only say to him, “Yes. And no.”
In August 2012, my sister said, “No more pictures. I look like hell.” And she did.
But she did allow someone to take a few snaps for her 55th birthday, November 2012, three days after Thanksgiving. I can tell that she is trying her damndest to have a good time, though I know that she is miserable and in pain, that she has learned to sleep in snatches, between increasingly violent bouts of coughing. She says, “I never knew. You breathed. So many times. A day.” Sixteen times a minute, a thousand times an hour, twenty-four thousand in a day. For her, each breath has become a calculated effort, a slow form of torture. Every so often, she gets short of breath, can’t catch up. Those seconds double in length. Chronos. She has had two bouts of pneumonia in the past two months, though she has not yet been overrun by the pseudomonas.
After her two-hour birthday party, she slept almost around the clock, waking only to cough, take a sip of juice, pee. She had completed six chemo treatments. Three weeks from Thanksgiving 2012, she will begin “maintenance” doses, designed to maintain the precarious tumor pushback that the radiation and chemo had achieved. She said to me, that Thanksgiving weekend, “I feel pretty good, considering.” December 2012, she receives the first maintenance chemo, which she “tolerates well” as promised. No one knows, at that point, about the pseudomonas, lurking deep in her lungs. No one knows, at that moment, that it is the beginning of the end.
February 11, 2013, four days after my sister died, I dig deeper into our mother’s files, into my own stash of digital pictures. I keep adding pictures to the display board, until it is a tightly packed visual chronicle of her life, so that not one empty space remains. She was functionally bald until she was almost three. Her transparent blonde hair—long and fly-away soft—grew, then darkened. For the past few years she kept it cut just below her ears, glossy, thick, and absolutely straight, a perfect deep chestnut cap on her head. She used that head of hair as evidence—comparing it with mine, gray by the time I was 35—that she was in fact the younger sister. It’s a sort of double joke: Not just the hair color and the younger/older, but the fact that we’re less than 11 months apart. For five weeks each year, mid-October to late November, we are the same age. She once told my grandmother that those weeks were the worst and longest of the year. My sister and I have laughed at that, a lot, in the past few years, calling each other on birthdays, saying, “Hey, you wanna be the older one now?”
When my sister was small, and the thick blond cap still darkening to brown, she could hang upside down on the swings in our backyard, and her hair would fall in a sheaf, covering her eyes, exposing the soft, down covered lobes of her ears. When she righted herself, her hair slipped back into place, would swish once or twice as it settled, no combing or rearranging required.
I think about her hair a lot.
In the oncologist’s office, June 2012, newly diagnosed and overwhelmed with information about “protocols” she firmly signed her name on the paper that said, “NO” to an experimental regimen. Her reason: She did not want to lose her hair. I was furious with her, could not understand her thinking. Hair grows back. Life does not. She said, between coughs, “I am not going to be bald.” She stared me down, concluded, “And I am not talking about this with you.”
Over the next weeks, as we drove to the radiation appointments, we talked about the traffic, the weather. She told me that I needed to buy some new shorts. That I needed to talk back more to our mother. On other days we talked about the things no one wants to talk about. The scans of her body that showed cancer not only in the lung but in the lymph nodes, the liver, the brain. Lympho-. Hepato-. Encephalo-. The cold clicking of the machine that dispensed radiation to her lung. The discomfort of fasting for hours for the tests: CT, PET, MRI, the pain of needles for the contrast. The horrible taste of the numbing spray that preceded the bronchoscope. The frame that will be screwed into her skull (cranio-)—a bolt above each eyebrow and two in the back of the head—to administer stereotactic radiosurgery to the golf-ball-sized lesion in her brain.
During those weeks, she complained only twice. First, at the taste of the “magic mouthwash” prescribed to ease the irritation in her esophagus. She called it “ass medicine.” Second, how the “minimal” side effects of the radiation made her feel as if she were walking uphill in a lead suit and left a deep, itchy burn between her shoulder blades. The area turned first red then brown then black. We were sitting outside on a cooler day, sipping tea and enjoying the breeze. She asked me to put some lotion on her back. The shadow etched by the radiation was the exact shape and size of the tumor I had seen in the CT scan. It looked like a giant butterfly, one broad set of wings on each side of her spine.
On Mondays, after radiation, she wanted to stop by the Last Chance thrift store since Monday was two-for-one day and because she couldn’t wear any of her clothes from the previous summer. On Tuesdays, after radiation, she wanted an Ice House beer, which she put in the freezer until it was slushy, then drank with a straw. On Wednesdays, after her son and grandsons visited, she worried that her youngest grandson would think of her as “always sick.” On Thursdays she wanted to eat at Hardee’s, when the ham and cheese sandwiches were two for one. She never managed to finish the first. Every day, she said she wanted to return to work, if she could just rest up enough, somehow gather sufficient energy to make it through a shift.
She didn’t want to go on Social Security disability income. She said, “What about my retirement?” Then she said, too brightly, “Oh, that’s right. I’m not going to retire. I’m going to die.”
In the hot months of summer 2012 we will pull on and off the road many times, in transit to one of the “isties,” as we come to call them (-ist, one who specializes): the radiologist, the oncologist, the neurologist, the pulmonologist, the ER specialist, the hospitalist. But this time, when she says, “I’m not going to retire” we pull over. And we both sob, although it’s not a feeling of togetherness, each of us locked in our own particular universe of misery. Over the following months, in the time we are able to spend together, we do not cry together. It is not something we agree to out loud. I think we are thinking that if we do not cry, we will not have to face the after, that we can return to the time before.
When my sister comes out of the ICU, the next to the last day of 2012, she says, “Damn, I need a haircut.” She has survived kidney failure, heart failure, bone marrow failure. She will be in the hospital four more days, home for a day, then back in the hospital, where she will remain for all but a few days of the rest of her life.
We know how this ends, don’t we? The pseudomonas never went away, just into partial abeyance. Her kidneys never completely failed again, nor did they ever fully function. Her heartbeat was much too fast, and its pounding raced through the precious few calories that we were able to get, and keep, on board. Her bone marrow produced red and white cells, here and there, never consistently or for long.
She says that she wants to live long enough that her youngest grandson will remember her. She is not afraid of dying, so much as of being an unknown entity. Our father, who died when we were 11 and 12, has always been just a name for her son. He calls our father Grandaddy Hughland, to distinguish him from Grandad Thomas, on his father’s side. But our father is an abstraction to him, a two-dimensional being set in pictures from long ago. My sister says, “I know how that goes.”
Even as we talk about the goal, we know it isn’t possible. Her body is wearing down. Each day, a little more weight slips off her bones. I put her into the tub and although she is not weightless, I can lift her in and out. She has no body fat. Her arms and legs are bone and skin. Cachexia. The loss of body weight that can’t be reversed by eating. A friend of ours, a nurse, stops by, says, “Tumors are greedy. They take everything and leave you nothing. Until there’s nobody left.”
In her last hospital stay, January 2013, between CSI reruns, my sister and I talked about the afterlife. Both of us wished we felt more certain about it. She fretted. She felt not quite ready to die but was running out of energy to live. She worried that she would “linger,” caught in the no-woman’s land of not well enough to enjoy any shred of life while being just a little too well to die.
She was still enjoying pieces of the world, in particular, the outfits worn by people being interviewed on the news. One woman, with a girth my sister must have coveted, complained to the camera about something; I don’t remember what she was unhappy about. I do remember that my sister pointed at her mismatched, decidedly over-expanded spandex, and said, “Oh, no. No, no, no.”
The platelets and the breathing treatments and the oxygen allowed her to talk a little more, every so often. After the news cut to a commercial she turned in her bed, said with absolute conviction, “I’m telling you, Beth. They should monitor these shows. Seeing something like that could just kill a sick person.”
We know how this ends, but even I was surprised by the details. My sister got her wish about not lingering: February 7, 2013, at 1:45 a.m., she had a sudden, massive hemorrhage. She died almost instantly and without pain. She was on the sofa that had become her universe, everything she needed arranged in a neat circle around it. She’d said, “Do not put me in a hospital bed.” I didn’t.
I do not know if she knew she was dying, but she lay back on the sofa and stopped breathing. That was all. When I picked up the urn with her ashes, three days later, I was struck by how heavy it was. Her ashes seemed much more substantial than the person I had lifted and carried in those last days. Perhaps the weight was the same as before. But, after, it felt so very different.
I don’t have a choice about how this ends, but I can choose what I want to remember, what I want to write here. February 2, 2013, 7:00 a.m. I was hooking up her IV, a dose of fluids and antibiotics to keep the pseudomonas from blooming again. I lost my grip on the tubing, and managed to squirt her in the face with a dose of saline solution. She opened one eye, said, “Goes in my arm, Beth. Not my face.” But she smiled as she said it. Then she settled into a quiet sleep.
An hour later she woke up, sat upright: “I feel good.” It was if someone had turned on a switch. She was energized, talkative, engaged, in that luminous state that so often comes to people with cancer, soon before death. I tried hard to keep from thinking about that, said to myself, over and over, “Now. Now. Just now.” The Last-Chance thrift store was closed, so we went to Wal-Mart, bought three or four things we absolutely didn’t need, laughed at the prim voice of the automated check-out register: “Please. Take. Your. Receipt.” My sister mimicked the voice as she mock-directed me: “Please. Start. The. Car. Turn. Left. Here. Red. Means. Stop.”
When we got back to the house, I asked her what she wanted for lunch. She agreed, after some negotiation, to some split pea soup. Then she asked for turtle tracks.
“Ice cream. You’ve never had it?” She said the “never” in such a tone of incredulity that I had to laugh.
“I’ll go get it.”
“Good job, professor.”
I trundled to the store in the wide-body Buick, had a moment of utter panic when I was able to find moose tracks but not turtle tracks. I asked a store clerk, who pointed me in the right direction, said, “Oh yeah, that’s great stuff.”
I bought two gallons.
Back at the house, I scooped out a small bowl, the same doll-sized portions that were intended not to overwhelm her, to make her feel like eating was a task she could manage. When I presented the bowl, my sister looked over her reading glasses—the ones she had not worn for months—said, “Bring the carton.”
I did. And two spoons.
She reached down into the carton, plucked out a bit of chocolate. “See? Turtle.” She used her spoon to break it in half. Chocolate on the outside and caramel on the inside. She beamed, moved the turtle toward my mouth. Then, just as I opened wide, she snatched it back, popped it in her mouth, let loose her trademark “Haaarrh.” The laugh I had not heard for months.
“Bitch,” I said.
“Heifer,” she shot back.
Our mother called from her room. “What are you two doing?”
In tandem, we said, “Nothing!”
We laughed again. We made our way through the dense colony of turtles. My sister stopped eating, peered over the rim of her glasses, and gave me a look—just for a moment—of absolute, unguarded love.
I pushed the remainder of the ice cream onto her side of the carton. She ate it. We put down our spoons, used our fingers to lick the carton clean.