“But it isn’t really about her,” I say.
“Yes it is,” he says. “It’s about you, but it’s also about her.”
In dying, Alcestis asks her husband to grant her one favour—“Only a small thing. / Nothing to equal what I have given you. / I think you love our children as I do. / Admetos, let them be masters / In their own house. Do you understand me?”
This is what I long held as true: all children are their own masters. In becoming a mother, my understanding of vocabulary changes. Before, the possessive pronoun mothers use for their children irritated me. This is my baby; the baby is mine. It seemed petulant and incorrect: a child belongs to itself. It is a limitation of language that we don’t have a word that can encompass how it can be both—that a child can be her own as well as belonging to her parents—but “my child” no longer seems quite such an improper term now that I am growing a human myself. Now I have a new understanding that I am my parents’ child, and that the sick girl belonged to them in a truth deeper than law or biology.
“If nothing else,” my doctor adds, “in becoming a mother, you make her a grandmother.”
My mum and I rushed home from the doctor’s office to get my dad and pack a suitcase. I don’t remember how long I thought I’d be gone for—I might have brought one change of clothes and a toothbrush. I do remember picking out a white t-shirt that some friends had bought me for my fifteenth birthday a few weeks before, with red sleeves and the word Guess emblazoned in blue and red beads, fine as fish roe. I want to have my friends around me, I thought, so self-aware it was as if scripted. I held the t-shirt up and felt, for the only time, a melodramatic self-pity, thinking of myself as “being sick” and “going to the hospital.” When things aren’t serious, people can take an indulgent, almost shameful pleasure in experiencing pain. When things are serious, there’s no time or room for the fabrication of feeling.
I was meant to work at the hair salon on my block that evening, where I worked as a receptionist after school. I stopped in to say I was sorry I wouldn’t be able to make my shift. The owner was completely understanding, of course, and gave me some advice: “If you end up having to stay overnight, ask for an Ativan. It’ll take the edge off.”
We must have been in the middle of rush-hour traffic down to the children’s hospital in the city, but I just remember leaning my head against the car window, and then being there. A brick archway and glass doors. My dad went to park and my mum and I walked through the sliding doors.
A nurse, a man in dark blue scrubs, took one look at me and said: “Oncology?” I am sure that I could recognize this nurse even now; I could pick him out of a lineup. Not as he would be now, of course—he is frozen as he was then.
I had no idea what the word oncology meant, and it turns out my mum didn’t know either, but she said, without hesitation, “Yes.” Later, she told me that this instinct came from the sense that saying yes would get us into a private room, and she wanted me to have as much quiet as possible.
We arrived at the Hospital for Sick Children on the Friday afternoon of the Victoria Day long weekend, and I did get a private room. It mattered that it was a long weekend because most of the procedure rooms were closed, which meant that I was given a three-day window of freedom. Maybe freedom isn’t the right word here, since I was already embedded within a system, within a protocol, within a building, that I would be confined to for many months to come. But it was a limbo where we knew something was wrong, but not how wrong.
My room in the ER was windowless. I asked for Ativan, and was given it. I slept at odd hours, at all hours; I did not leave the room until Sunday. The hallway scared me; it felt like I could get lost out there. There were stretchers and blood, hushed voices and loud voices, babies screaming and adults crying. There were no windows anywhere except for the sliding glass doors on street level, and being in there felt like being in a bunker. Later, when I was brought up to different wings for tests, it was through a cargo elevator, not the main elevators in the glassy atrium. The whole ER wing seemed like a spatial, logistical impossibility—I never could place it within the architecture of the hospital.
After a few hours had gone by and I’d already been pricked for blood a dozen times, I was given an IV; the demand for blood exceeded my veins’ ability to freely supply it. The IV went into the top of my left forearm, wrapped in gauze, and I could feel it all the time. In order to keep the vein open, a bag of saline hung from the swan’s neck of a metal pole, and when the nurses needed to take blood, they would remove the tubing, seal off the saline, insert a needle into the rubber cap connecting to the pipe in my arm, and draw my blood into a syringe. If they didn’t give me warning when this was going on and I happened to see my own blood, I’d either cry or scream.
Over the course of the weekend I answered the same questions to so many different cycles of doctors, but eventually, the doctors started becoming more consistent. When it became clear a certain specialist wasn’t needed, I suppose, they could do away with them. The ones who introduced themselves as hematologists and oncologists ended up being the ones who remained.
By Sunday morning I was in a room in a general wing on the sixth floor, with windows and a clearer view of the lay of the land. That afternoon, some friends and neighbours came down from our cul-de-sac in Richmond Hill, a suburb north of Toronto, with cake and cookies. It was my dad’s birthday that day, and the treats doubled as “Happy Birthday” for my dad and “Get Well Soon” for me. This was back when such well-wishes were customary; back when it was still expected that I might get well soon.
There’s one photo from that day, and I’m in my bed, eyes half closed, looking at the photographer—it must be my mother, as she’s not in the photo. It’s clearly a candid picture: nobody is looking at the camera except me, and I’m in the middle of saying something. My aunt is smiling, arms crossed, next to the neighbours from across the street. Two friends have their backs to the camera, their shiny brown ponytails pouring out of the frame. Another friend is standing in the doorway next to my dad. Everyone in the room is looking at my IV, and all the tubes behind my head, except for my dad. My dad is the only one looking at me. Our mouths are both slightly open; perhaps we’re talking to each other. He’s wearing a red plaid shirt and has a white paper badge affixed to his pocket that says PARENT.
On my right, there’s a boxy grey computer on a huge wheeling cabinet, probably brought in so I could check the Hotmail account I hardly ever used. The screen saver on the computer is a black-and-white Anne Geddes photograph of two babies dressed as cherubs.
I’m sitting at the end of the cot, one leg flung over the metal barricade at the bottom, the other hanging off the side. A slipper is lost underneath the bed; my blankie and my lilac-coloured teddy bear, Lilac, are smushed between the pillows. I’m wearing a purple hospital gown and white sweatpants, my long dark hair tied up in a messy bun. The arm with the IV is propped on a plastic rectangle, taped into the package like a splint. This is so that the tubing won’t bend.
My eyes—I have looked at this photograph so many times and only just now zoomed in on my eyes—are distant and disenchanted. The bruises beneath have faded a little—they’re the size of fingerprints—but my right eyeball is, like a glass of Welch’s grape juice, half-full of dark, bright blood.
Emergency Report
2002-05-24, 17:05
Nature of illness: Unusual blood work
Place of accident: Not an accident
Brought to hospital by: Both parents
Triage classification: Urgent Team A
Asked by Onc. to assess for admission.
15 y/o female, awake, alert, pale, thin, with pancytopenia and unwell since March; tonsillitis; fever on and off; night sweats + weight loss
When some preliminary results had come in, we were told that it could be one of three things: mono, aplastic anemia, or leukemia. If it was leukemia, they said it was probably one of
two types: ALL—acute lymphocytic leukemia—or acute myeloid leukemia: AML. The first one was more common among children—at fifteen, I was still a child—and had a longer treatment protocol, but a much higher survival rate. At the time, the survival rate was around 90 per cent, and the treatment lasted for two years. Most of that time was as an outpatient, though, with the children able to live at home. Kids with ALL are on steroids for a large part of their treatment. These kids had been pointed out to me on the ward: swollen toddlers with huge cheeks and thinning hair sticking out of their scalps like electrocuted baby chicks.
The doctors talked less about AML in that brief pre-diagnosis period, focusing instead on the option with the higher survival rate. I did know that the treatment for AML was shorter, and much more intense. Over time, I gleaned that the remission rate was around 50 per cent, but the relapse rate was high. Googling it now, I’ve learned that the five-year survival rate in 2002 was less than 10 per cent.
I’d never heard of aplastic anemia, so I privately decided it could not be that. And while I had a feeling I wouldn’t be this deep into a long weekend in the Hospital for Sick Children if it was just mono, I gave myself a fifty-fifty chance between mono and cancer.
Nobody talked about Natural Killer yet. That wasn’t on the table.
With the long-weekend limbo over, I was booked into a procedure room and put under anaesthetic for a spinal tap and a bone marrow aspirate. Needles were inserted into the liquid inside of my spine and in the space between my hips where stem cells grow. I was told there would be an ache for a few days afterwards, but there was so much else going on that I didn’t notice any aching there.
On Monday, the day after my dad’s birthday, many of the doctors I recognized from Emergency filed into my room. There were five, maybe six doctors encircling my bed, pressed up against the walls, as far away from me as possible.
“It looks like cancer,” they said.
I don’t remember if I said this out loud, but my thought was: “It looks like cancer, or it is cancer?”
(When I ask my dad now, he says, “Oh, you said it out loud. You were very astute, actually—you spoke before your mum or I even had time to have a thought.”)
The doctors said they were still figuring out exactly what kind of cancer it was.
I asked how long the treatment would last.
“Around six months.”
So, I realized, it was the worse cancer.
“Will I be in the hospital for that whole time?”
“You might be able to go home for a few days at a time, but it’s likely you’ll be here for most of that, yes.”
Six months, I thought. Fine. After six months, I’ll be fine.
I immediately framed the situation so that my only problem was time.
The doctors asked if there were any more questions. I remember silence. I remember looking at my feet under the sheets, the shape of them making ghost mountains, and the feeling of being looked at.
Though I’d had what seemed like litres of blood removed for tests over the previous few days, the presence of the cancer was so diffused in the samples they’d taken that it was not possible to form an accurate diagnosis. Many people have aberrant cancer cells floating in their blood that will naturally disappear before developing into an illness. Once they obtained those samples of my bone marrow, however—the tissue that produces blood cells—they saw that it was nearly 100 per cent cancerous. If treatment didn’t start within three days, they told us, I would die. If I had come to the hospital three days later, I would not have lived.
The doctors left. I fell asleep, and ate leftover cake when I woke up.
When I was twenty, I tried to write a novel about my experience. From the beginning, it was the story of a fifteen-year-old girl who got sick, then died. I spent eight years working out the rest of the story, all of the accompanying surges of narrative, but that part always remained the same. The girl died, like I’d been supposed to die.
I was telling a new friend about the novel I’d spent so long working on, and like many others, she asked why the protagonist died. I always responded with the same thing: Beatrice dies because I didn’t, but was supposed to. Because so many people die. Because that’s life.
But this friend asked a question that nobody else had:
“Did you want to die?”
Or maybe she said it like this: “Did you want to die?”
Either way, the answer has always been obvious to me. No.
That was the first time I considered changing the ending.
Nurse’s notes in the progress report from the diagnosis:
Parents + Harriet have a realistic view of treatment. They asked appropriate questions and responded appropriately. Emotional support ++ offered + required. Overall Harriet appears to be a bright, intelligent teenager with relevant concerns and issues. Much support is needed.
Doctor’s notes in the progress report from the diagnosis:
~ 1400-1430hrs, parent + PT told results of BMA. Leukemia. Awaiting confirmation of type. Shock, reaction.
Note: Cytometry results not consistent with diagnostic of AML.
Abridged psychology report from after the diagnosis:
When we first met Harriet, she was lying down in bed and appeared visibly tired. Harriet indicated that at that point she did not want to participate in any preliminary discussions about psychological consultations and suggested that it is best if we talk with her parents. Since Harriet’s mother was not present, we asked Mr. Lye to talk privately about his concerns regarding Harriet and his family’s psychological adjustment. Mr. Lye stated that after Harriet found out about her diagnosis, she cried for about half an hour and then dealt with it “head on.” At the conclusion of the session, we went back to Harriet’s room.
Harriet was anticipating intake of heavily sedating medication and she did not want to have any discussions about psychology at that point. She only asked that her father stay by her side when she is receiving the medication.
After the diagnosis I was immediately moved up to the eighth floor—the cancer ward. I didn’t have time to dwell on what this meant. To have cancer. To be cancerous. Actually, I had nothing but time, but time did not belong to me. I did not have time.
My room had a window with a ledge where I could sit, craning my neck around the brick wall directly opposite to look down at the street. I could see people walking to work, to the subway, to get coffee. I couldn’t believe that, for so much of the world, life was continuing as normal.
The first round of chemo had to begin right away, before my permanent IV had been inserted, and the drugs burned the narrow veins in my arm. It hurt so much that, sometimes, I had to be held down.
The nurse delivering one of the treatments wore a lead apron, like you wear when getting your mouth X-rayed at the dentist. Because of the risk of exposure to the chemicals, nobody else was allowed to be in the room with me when those drugs were being administered. So what is this doing to me? I thought.
I was so sick and so tired that the only path I wore was from my cot to the bathroom, where I had to trundle my IV behind me and manoeuvre it into a corner in order to pee. I tried leaving the machine outside since it took up so much space, but I hated having the door open when someone was in the room. The bathroom was the only place where I had any sort of privacy at all, and even then, every time I peed I had to put a specially made plastic bucket into the toilet to capture the urine, which would then be tested by the nurses. They had to monitor how much liquid went in and how much came out; pH levels; whether there were any signs of infection. This, even more than my IV, made me feel like a body-machine.
I could get the IV temporarily disconnected in order to bathe—a nurse would have to come to sterilize the caps and seal them off with 3M tape—but the little pouch of tubes would permanently hang from my body, and getting them wet would risk infection, which would mean
getting the iv inserted all over again. I was incredibly protective of it. At the time it felt like fear, but I wonder now if it wasn’t something like pride.
One of the things everyone knows—and everyone asks about—is that people with cancer lose their hair. I was told that this would happen quickly, given the strength of drugs I was being given. Because it was very hard not to get my IV wet, but also because I had little physical strength at that time, I needed help showering. I’ve never been the kind of person to be naked around my family, not even as a child, so I wore a t-shirt and underwear and sat in the bathtub as my mum stood behind me, holding the shower head low.
“It’s too hot,” I shouted. “Now it’s too cold!” I hadn’t bathed or brushed my hair in a long time, and my hair was beginning to form dreadlocks around my neck. I was terrified of brushing it; I didn’t want to lose it. Once it was gone, I felt, it would be gone forever. “You’re making it fall out!” I shrieked, seeing strands on the porcelain around me.
“That’s normal,” my mum said, trying to be calm though I could tell she was not finding this easy either. “Hair falls out when you shower!”
I frantically counted the strands and tried to determine whether the amount was in fact normal or whether, instead, the chemo was taking effect, but I didn’t know what “normal” was in this place.
When the shock of my pregnancy had settled, I felt enormously porous to the world. Walking down the street, I noticed people’s cheeks pinking in the February wind. There were plastic buckets of tulips outside the fruit market at the corner—red, pink, orange, purple, yellow. I wanted them all. I wanted to have them, to eat them, to be them. I was super-living, living for two, larger than usual and my eyes more open than they’d been the previous week.
Someone told me that to be a mother is to make a death, because death is bound up in life, but this did not feel like a revelation. I knew my body could create death. I’d never trusted, was told to not even imagine, that it also had the power, that magical banality, to create life.
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