One of my cousins travelled around Southeast Asia, lighting candles for me in all of the temples and sacred spaces he visited.
My Girl Guide leader’s husband was travelling in Mexico and every day visited a particular famous church where he would sit and pray for me.
The woman who owned the salon where I worked, whose children I also babysat occasionally, went to temple with her whole family and, at the moment when the rabbi asked if anyone had someone they wanted to pray for, they would all say my name.
Someone brought me a small Buddha carved from stone they’d bought in Nepal.
“A god is deciding this, not me,” Alcestis says, but she later contradicts herself: “I chose this! I did not have to choose it.” In her case it really was both: Death demanded a sacrifice, but Alcestis made the choice for the death to be her own. When I was working on the novel, there were many drafts in which Bea, in an attempt to take control of her life, took her own life. She didn’t choose to get cancer, but she did choose how to live, which sometimes means how to die.
I picked up a habit when I was young of trying to find metaphors everywhere. When I look at something, I think of how I could turn it into a metaphor. Waves become swans. Swans become clouds. Clouds become islands.
“What do you think it looks like?” I ask Cal, pointing to Lake Superior as we drive west along its north shore. The sky is silver and the water is silver; the radio says a storm is approaching. A vortex of clouds bends: it looks like liquid metal; it looks like science fiction.
“It looks like a storm is coming over the lake,” Cal says, reminding me that sometimes it’s good to just see a thing for itself. Water is just water. Clouds are just clouds. The thing itself can be enough.
I find myself asking questions like “What does cancer want?” and “What is cancer’s goal?” But, like us, cancer just wants to live. Like most living things, its goal is to be fruitful and multiply. In Siddhartha Mukherjee’s history of cancer, he writes: “cancer cells are hyperactive, survival-endowed, scrappy, fecund, inventive copies of ourselves.” And this, he notes, “is not a metaphor.”
The third round was brief but intense: for five days, I was given chemo for twenty-four hours a day, which meant I was unable to ever leave the ward in case of spills, because only the staff on the eighth floor was trained in handling these extremely toxic drugs. I was also in the group room, which, as I’d noted, absolutely sucked. There were five patient beds and we weren’t even separated by curtains. Any time an infusion of drugs or blood or saline ended, an IV beeped. Any time the tubing got blocked by an air bubble or a twist or even by someone sitting on it, which happened more often than you might think, an IV beeped. My nurses tried to placate me by saying being in the group room was a good sign: it meant I didn’t have any contagious infections. This almost made me wish for an infection.
My mum wrote: It is very hard to be in the group room. Noisy and chaotic.
Every morning, my parents let me eat Lucky Charms and the extra sugar appeared in my urine. Worried about diabetes, the doctors made me switch cereals.
The list of all the foods I ate during those five days was extensive: after trial and error in the first two rounds, the nurses and doctors had come up with a rhythm of anti-nausea medication that worked against the chemo drugs. Pizza, takeout steak and potatoes from a restaurant on the other side of Nathan Phillips Square that my dad was able to run back to my room in “only nine minutes,” Subway sandwiches, Doritos, “a mortadella sandwich at 10 p.m.,” microwaved spaghetti Bolognese, peaches, plums, apples, Häagen-Dazs.
Families weren’t allowed to use the patient bathrooms in the group room, and one morning my dad noted, not as a complaint but as a mark of pride, I think, that he woke up at five a.m. to be the first to use the parent shower facilities down the hall.
Six days after my admission, I was discharged—my shortest-ever time in the hospital. In my handwriting, on Saturday July 27:
Nurse Elizabeth says that I can have blood and chemo at the same time! Yay! This means I can leave earlier.
After discharge, though, unlike in the interlude between rounds two and three, I couldn’t keep the infections away. My parents monitored me constantly, and as soon as my temperature spiked, I had to go downtown. For three weeks I bounced back and forth between home and the hospital, being shuttled along the quiet midnight highway, radio off, laying my head against the cool window.
JULY 30:
36.6
37.6
37.7
38.8 at 3am. Call to HSC.
38.6 at 4:15am at HSC emerg.
Naturally, my parents wanted me to be at home, for us to all be at home together. I felt like I was betraying them, but that wasn’t what I wanted. I wrote on the forum during this period:
When I’m at home, I’m worried about things more than I am in the hospital, because the doctors and nurses aren’t there to notice things that can happen, but they still do. So it’s a lot easier to be at the hospital.
Every time I returned to hospital with a fever, I had to be admitted through the emergency room in order to have my files processed and for a bed to be found for me somewhere. Occasionally, especially if I wasn’t receiving chemotherapy, I would be placed in a general ward until room in the hematology/oncology ward opened up.
And every time my dad and I returned to the emergency room, it seemed that same nurse was working, the one who spotted me on the first day and asked “Oncology?” The routine of this was comforting, something I could count on. The relief at not having to explain myself every time was immense, especially since sometimes the fellows or younger residents would need some training to become more sensitive to my situation.
One evening, a young medical intern I’d not met before asked me to breathe so she could listen to my lungs through her stethoscope—“deeper please, again, and again”—until I nearly fainted.
“You must have heard enough by now,” I said. “I just can’t breathe anymore,” and I lay down, keeping my lungs to myself.
The first person I loved told me you are a miracle, with such compassion and awe. But miracles are things we can’t hope to understand. I feel desperate for some kind of understanding.
At some point in the summer—there is no note of his arrival in the notebook—a guy my age was admitted to 8A and given a room in the same corridor. It was rare to have teenagers on the ward—as it was a children’s hospital, there were proportionately fewer of us in those upper years before the age cutoff. I’d only met two, and neither of them had ever been in-patients at the same time as me.
One of my nurses told me about the new arrival when she was checking my vitals. She said it as though it was exciting news. A teenager. A boy.
Owen had been flown in on a helicopter. His parents arrived a little while later, as they’d had to drive down.
Similar to dogs (Fox, two years old, yellow-mouth cur), there was a standard way that parents and patients summarized their situations in verbal introductions.
Harriet, fifteen, Richmond Hill, Natural Killer.
Owen, fifteen, Georgian Bay, Rhabdomyosarcoma.
Things I remember about Owen’s arrival:
He had a huge family, lots of siblings, and there would be cycles of large crowds that would drift around, aimless in the way that hospitals make you, usually congregating around the bench at the end of the hall.
His parents were the same age as my parents.
I knew that his situation must have been serious enough to fly him in with Bandage 1, the hospital helicopter, which landed on the rooftop.
His flesh was so tightly packed to his bones and his skin had this waxen quality: it was yellow but also blue, as though his bare ankles, sticking out from underneath his hospital gown, were deprived of oxygen.
Accompanied by my parents, I went to Owen’s room to say hello,
and he said hello back.
In my twenties I briefly dated a man who’d also had blood cancer in his teens. I’d never been with anyone with whom I could talk about that time in a way that acknowledged how it was something you could think about both all the time and not at all. A baseline. This man had been fifteen too, but not as sick as I was: he didn’t have to spend nights in the hospital, and had been able to keep going to school.
When I told him about the novel version of the story I’d been writing, he said, “So Bea doesn’t have boyfriends? You’re making her out to be a kind of martyr, like a Virgin Suicides sort of thing?”
I didn’t know how to respond. “No, she just doesn’t think about it. I never dated anyone until years later, I just didn’t think about it either.”
My focus was on living. I didn’t think about loving. Telling him about young Heracles, though, and how much attention he paid me, how often he visited me, how he would bring me gifts and ask if he could hug me, my date asked if this Heracles guy perhaps had been in love with me.
This was the first time I’d considered that. “I guess,” I said, “that’s possible.”
This man had found the fiction unbelievable, but my explanation for it was that it was the truth. Maybe I just needed to write the truth, then.
As soon as we make it to the Atlantic coast, I have to fly back home for some doctor’s appointments, including what’s called the “anatomy scan.” The night before my flight, as we have every night on our trip, we each write a letter to the baby, whom we’ve been calling Bean. Cal’s handwriting is illegible even to him, so when it’s his turn he dictates, and I transcribe into the journal in which we’re collecting the letters.
“Dear Bean,” he says, and I write. “Tomorrow your mother leaves me and I will be alone with the two dogs. At the end of the week, your mother will return to me and you will no longer be a Bean but a she or a he in our minds. You’ve always had a sex but this will be the first time that we know it. I’m very excited for the ultrasound and very curious, but more than anything, I’m excited to see your little developing face for the third time.”
Since ultrasound technicians are not allowed to disclose any information, I have to wait for a call from my doctor’s receptionist with the information, and she doesn’t call me until I am inside the tube that attaches to the airplane, in line to board to go back to Halifax.
“Are you sure you want to know?” she says, “You don’t want a surprise?”
I beg her, “Please just tell me.”
She gives me the news and I immediately call Cal as I shove my bag into the overhead compartment and take my seat. I hadn’t realized I was crying until he picks up the phone: suddenly the reality of this child’s life is visible to me in a way it hadn’t been before, and this is overwhelming.
Cal picks me up from the airport, and since he’s a bit more reserved than the dogs, their enthusiasm for my return eclipses his. We drive mostly in silence—the rattle of the van on the highway in the wind makes it difficult to converse—heading for the valley near the Bay of Fundy. Every town we drive through has a sign saying Highest Tides in the World Found Here!
When we get to where we’ve decided to spend a few days, we set up camp in a mostly empty site. After heating up some soup and slicing bread for dinner, we get out the notebook where we write our letters to the baby, and Cal, again, goes first.
“I really missed your mother,” he says, while I copy his speech and decide on appropriate punctuation based on his cadence. “But she was busy with appointments and seeing friends, so I had to live with that. I looked at some pictures of her to help.”
I stop writing. “You missed me?” I ask. “You looked at pictures? You didn’t tell me that.”
“I knew I’d see you soon.”
Cal continues to dictate his letter: “I was sitting by a lake in the woods when I got the call from your mother after she had her ultrasound, and I picked up a stone and scratched on a large rock the words: BEAN IS A BOY.”
October 17, 2017: The day is grey to wake up to but quickly grows sunny, increasingly warm, unaware of itself. I have coffee, eggs for breakfast, and bike over to Toronto General Hospital for an echocardiogram. In the journal, my dad wrote that I had one of these in those first few days, but I have no memory of that. One of the chemotherapy drugs in my protocol can cause damage to the heart over time, so mine has to be monitored.
I remember sitting with my parents and the pharmacist, a tall and bony woman with a Virginia Woolf face, going over every possible side effect of all of the many drugs I was being given. This was fifteen years ago. We were in a quiet room, clear, indirect daylight was filtering in through the window, and outside all I could see was more windows.
“This one can lead to eventual heart problems in some patients,” she said. “Heart attacks, occasionally. But not until they’re around thirty.”
“Thirty?” My dad said. “But she’s already fifteen.”
To me, though, thirty seemed just as impossible as sixteen.
“Right,” the pharmacist said apologetically, speaking above me. “Right. Most of the patients I deal with are only two. Thirty is much farther for them.”
I am thirty now. I arrive at the hospital sweaty, though it’s mid-fall and I’m not even wearing a coat. I’ve never been here before and find myself observing details. No, not observing, more like searching for details to try to find an anchor in the world, outside of myself. Tim Hortons in the lobby. Inuit prints on the walls. If I could collect enough facts, maybe I would feel less unstable. Facts are grounding.
I take a crowded elevator to the third floor and before I’ve even joined the lineup, a hospital worker, shorter than me, takes my health card: “Signing in? Just in time.” He looks at me, and I think: What would have happened if I hadn’t come? What would they have done? Would I have been lost in the system, rebooked for later? Could I find a way to avoid interference indefinitely? But I would never do this. This line of thinking is absurd to me. Disappearance is the highest form of anarchy. Everyone has to believe in something.
A receptionist confirms my birthday and emergency contact—my dad, it’s always my dad’s name that I write down instinctively, for he is the one who would come to clinic with me, who would update the records, who would distill the information and debrief my mother—and gives me a hospital bracelet.
DOB: 10/04/87. ADMITTANCE: 17/10/17
Cuffed. A different kind of anchor. I start to panic. It’s an overreaction to give me a hospital bracelet with an admittance date on it for a one-hour outpatient procedure. It’s an overreaction to panic, too, but one thing leads to another.
A hospital worker in different-coloured scrubs from the first introduces himself and guides me to the windowless imaging room. He tells me to remove my clothes from the waist up and put on a gown from the stack on top of the filing cabinet, keeping the string at the back open. He closes the shower curtain that divides the room and stands a foot away from me, on the other side of the burgundy fabric, as I disrobe. I started crying when the receptionist put the bracelet on me, but now my eyes are full-on leaking. I lie down on the bed, on the sheet of crisp paper. The sonographer asks if he can come in, and I apologize, which means yes.
He takes a seat on the wheelie chair in front of the machine, and gently directs me to come an inch towards him, face the wall, and take my left arm out of the sleeve. He lowers the lights. In the low light and with my body facing the wall, he cannot see the naked parts of me. This seems to be the intention behind the position, and I am doubly grateful because it also means he cannot see that I’m weeping.
He tells me that the gel is water-soluble, and that he will try to be gentle but sometimes the pressure needs to be a bit stronger in order to peek through the ribs. I should tell him if I’m ever uncomfortable, though. He sticks three pads onto my skin, white with a small silver nodule to which cables attach, and this
system monitors my heartbeat—that electric green dip/dip/climb you see on TV that peters out while the patient is in surgery. I want to watch the monitor just to make sure my line doesn’t peter out, but I can’t watch the monitor because I know I won’t be able to look away if I do, longing to see something, not knowing what I’m reading, signs and symbols completely detached from one another.
Tears are coating the left side of my face now and I wonder if the machine can detect this level of emotion, whether my heart rate is jumping because of this. It’s quickly becoming out of hand; my fear—is it fear?—is spiralling. I wonder if he knows. I don’t think he knows.
There’s a sign on the wall right in front of me that says NO PHOTOGRAPHS/VIDEOS/AUDIO RECORDINGS. SONOGRAPHERS ARE NOT ALLOWED TO DISCLOSE RESULTS. A CARDIOLOGIST WILL EVALUATE THE IMAGES. CALL YOUR DOCTOR TO REVIEW RESULTS.
He asks me if my doctor has ever told me he’s heard a murmur, which seems to be disclosing the fact that he sees a murmur. Then he tells me that my “velocity” (I have velocity? A heart has velocity?) is normal. The machine pings every few seconds, every time he takes the measurements of something—the opening of a valve, the dimensions of a chamber. He tells me that the third bar on the screen (which I glance at quickly and then, as predicted, cannot look away from) is measuring the flow of blood.
He does all of these things despite the sign, so maybe he does know that I am crying. Maybe he is trying to be kind.
Crying, still crying, I try to focus on details in the room. More anchors. I notice the way that the cream metal bars of this stretcher-bed on which I lie cast shadows on the wall, even though the lighting is low, and remember a story I heard about how when blind children had their sight restored, they didn’t understand the difference between light and shadow. They thought the shadows were solid objects and avoided the shady side of the street, thinking it physically obstructed by some unknown force. Maybe they’re right; maybe they know something the sighted don’t.
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