Heart: unremarkable.
But my baby, I think, indignant, is completely remarkable!
Shortly after the ultrasound, I have to have a series of standard blood tests and other minor procedures to make sure the baby is developing correctly. Like when I brought the kids I was babysitting to the blood test that foreshadowed my disease, I now have someone for whom I need to brave my fear of needles. In this process, I begin to learn, in an embodied way, something I had known intellectually but never yet fully felt—that I’m no longer the child, no longer the subject.
The first time anyone in my family heard the term “Natural Killer,” it was from the mouth of one of the first doctors who’d seen me in Emergency. This doctor was a middle-aged man who wore white button-up shirts over his large belly and tucked them in to khakis, a large pager hanging off his belt buckle. He was kind, had a loud laugh. One month in, my parents saw him in the hallway and he stopped to chat and ask how I was doing.
My dad told him that the “CD56 tag had been identified.”
“Oh, really?” the doctor said. “So it’s the Natural Killer?”
I pictured my mum crumpling into my dad’s arms, but I learned, years later, that it was actually my dad who crumpled. By the glass windows looking over the atrium, up on the eighth floor.
It’s a long way to fall.
Natural Killer cells are a type of white blood cell in everyone’s bodies; they’re an integral part of the immune systems of many animals. They were only discovered recently; their behaviours were noted for the first time in the 1970s, and even at the time of my diagnosis, the technology to properly identify these cells was developing concurrently with my treatment.
Unlike other white blood cells, Natural Killers don’t follow orders in any kind of chain of command: they are autonomous, and can identify and kill targets on their own. The cells are so good at their jobs that they can even trigger other cells to kill themselves.
Among Natural Killers’ main targets are the cells in our bodies that mutate and become cancerous. This happens fairly regularly in all healthy people: a cell makes a mistake, chooses the wrong path, and Natural Killer cells find them and kill them before they propagate. They are able to do this because they can distinguish self from non-self, and even self from “altered self”: they can recognize the self that has turned against itself. They often misidentify the first, newly growing cells of an embryo to be a foreign body attacking their host, and as a result, Natural Killers are responsible for many miscarriages.
In my case, the Natural Killers had become cancerous. The cancer fighters were themselves malignant. The soldiers had betrayed the army; my cells were turncoats.
My medical team at Sick Kids partnered with hematology and oncology specialists around the world in order to help research my particular cancer, which, as my dad had noted in the meeting with the doctors, was “somewhat special and less common.” Doctors at Johns Hopkins Hospital in Baltimore were involved, as well as specialists at institutions in Japan and England. All of the doctors weighed in to determine my treatment protocol, and at the beginning, all of them recommended the bone marrow transplant.
I invested all of my faith and trust in my doctors, and in medicine in general. I surrendered my body to them. Now I can see this was a survival mechanism. It was only when I came to hear phrases like “the specialists are debating” or “there isn’t a consensus among the team” that I was even slightly aware that there wasn’t a sure, straight, and clear path I had to walk down in order to reach my future healthy self. The doctors were figuring it out as they went. I was blazing a trail.
Only six people had previously been diagnosed with Natural Killer leukemia, and none of them had survived.
Now, I type “Natural Killer Leukemia” into Google:
An article published in 2009, seven years after my diagnosis: “On review of the English-language literature only 68 published cases were identified”
Aggressive chemotherapy followed by a stem cell transplant “appears to slightly prolong overall survival, but relapse is almost inevitable”
From Nature magazine: Natural Killer leukemia is “catastrophic”
It is “the rarest and worst malignancy”
Median survival time of Natural Killer leukemia is 58 days
There are “no known survivors”
“The clinical progression is inexorable despite treatment”
Inexorable. Relentless, inescapable. I hadn’t known.
I keep searching the Internet, wanting to find evidence of myself as the exception. “No known survivors except, in 2002, a fifteen-year-old female from Toronto.” I can’t find this except, though.
I need people to know that I exist, that their experiment worked, that by some combination of luck and science, I’m alive.
People always ask me whether I was scared. Whether I thought I was going to die. Part of the answer is that I don’t think that I ever truly understood the scope of what was happening to me. I’m not sure whether fully comprehending this would be possible for anyone, let alone a child. And not knowing can be helpful. In many ways, I chose not to look at things directly.
When they identified the involvement of the Natural Killer cells, I asked one of the young resident doctors what my odds of survival were. I remember him sitting across from my hospital cot, his legs crossed. “Well,” he said, “since nobody else has survived it, and it’s combined with something else, we just don’t know.” Somehow, this did not daunt me. They don’t know! I thought. So it could be good!
Another part of the answer is that I just didn’t accept death as a possibility. I’m not saying I “chose to survive,” or that it had anything to do with bravery. It was a combination of luck and circumstance, nothing else. Saying survival is about anything else—bravery, or love, or optimism, or faith of any kind—would mean that those who do not survive are lacking those things. Like, someone died because they weren’t brave? Bullshit.
(Survival itself seems too loaded a word. Survivor is a reality show, a feminist anthem, a syndrome caused by guilt. I’d rather just say, I lived.)
I guess what I’m trying to say is that a gun was held to my head and I couldn’t look down the black hole of its barrel, or feel the cold metal on my skin. I had to look straight ahead and keep on walking.
When I first saw the van it was an evening in November and my stomach sank as we sat in the cold, dark, tiny box, but I tried to be enthusiastic. It’s no longer than an average car, and I couldn’t imagine folding my life up that small for a whole summer. I didn’t go back inside until the spring, a bright, warm morning. The van was parked on the street and Cal popped the top, zipped open the three windows in the canvas, and I lay like a happy cat in the sun.
We set off four weeks later.
Let me give you a little tour: there’s a bench in the back that folds down to become a bed (this is where the dogs sleep) and folds up if you find yourself parked in front of the ocean and want to sit and enjoy the view. There’s a canvas tent-like extension that pops open so you can stand upright for about four square feet—this is convenient for cooking, as it’s right above the “kitchen.” When the top is popped, another bed-frame extends—Cal insists on calling it “the second bedroom”—and this is where we sleep.
There are now five heartbeats in the tiny space, but at least we have the whole world for our living room.
Nothing was mine. It wasn’t my bed, my door, my table. It was the hospital’s bed, the hospital’s door, the hospital’s table, and I was just occupying the space. It started feeling like not even my body was my body—my body had turned against me.
At some point, either my dad or I started calling the IV pump “Ivy.” “The nurse has to change Ivy’s tubes,” we’d say, or “Will Ivy fit in there with you?” It didn’t feel anthropomorphic or cute; it felt accurate. This machine
connected to me felt like part machine and part pet; part self and part other. A symbiotic thing, not quite alive, but not entirely unalive, either.
The nurses performed a careful choreography to time the drugs and blood transfusions. Chemo couldn’t hang at the same time as a transfusion or the drugs would eradicate the fresh blood; certain drugs needed a bolus of liquid to be injected quickly before administering them; antibiotics needed to be meted out between chemotherapy doses. If there was ever a moment when there was no bag of drugs or blood or liquid food hanging, saline was hung at a steady drip in order to “keep the lines open.” The lines of my veins, or the lines of the machine, or both. They were essentially the same thing.
Because of the fever and the infection I’d contracted, I had to continue straight through to the second round without going home in between, as we’d hoped. I say we, but at that point, I don’t think I was hoping for anything like that: I could only focus on what was in front of me. I had already accepted that I’d be in the hospital for six months. After that, I said to myself, like a prayer or a promise, I’d be cured.
Nurses performed dressing changes every couple of days. A friend was in my room when a nurse came to say she had to change my dressing, and I had to explain it wasn’t about my clothes, and I didn’t mind if she stayed in the room while it happened.
The point on my chest where the tubing entered my skin was susceptible to infection, as it was basically a constant open wound. It was covered with a thin, clear plastic sheet, about the size of a playing card, which stuck right onto my skin, and on top of that was gauze and porous tape. This covering system had to be changed every couple of days; more often if it got especially wet, or started getting itchy or red.
My aunt was swapping in for my parents during a dressing change, and she noted in the book: I asked Harriet if this bothered her. She said “No.”
But thinking about it now makes me so uncomfortable that I can’t believe I would have said it didn’t bother me. I can hardly write about it. Putting my mind into that memory, I want to recoil.
The raw patch of puckered skin touching air was so tender it felt painful, but more than that, I’d become so terrified of germs that having this flesh, which I’d been told was so sensitive, exposed—
It made breathing difficult.
Once the tape and sticky sheet had been removed, like ripping off a Band-Aid, the nurse had to wipe it all down with a Q-tip covered in rubbing alcohol or hydrogen peroxide (whichever it was, it was something that stung). They’d have to let it dry for a few moments—during which time nobody, not the nurse, not me, not anyone else in the room, was allowed to breathe near me at risk of transferring germs. I held my breath. I let it go, looking at the ceiling. Once it was dry, they put a new dressing on.
The scar is the size of a nickel now, still shiny and pink. I couldn’t touch it then, and can’t even now. It falls about two inches below my right collarbone. You can see it when I wear a tank top or bathing suit. When people notice it, they don’t usually comment on it—it’s that kind of serious-looking.
Writing this, I have to look at myself in a way that I never did then: as a victim. (Victim: target, prey, object.) Writing about myself as a subject, I must subject myself to a sort of narrative.
Having no control over my life in any micro- or macroscopic way, I became very assertive in whatever way I could. I would demand spaghetti or steak or strawberries, and expect the craving to be instantly fulfilled. For the most part, it was. There was one particular nurse whose demeanour I found patronizing, and I told the head nurse that I no longer wanted her attending to me. I never saw her again.
There was also one particular doctor whom I liked the best: he had a smooth South African accent and a haircut like my dad’s. Once when I was scared I asked to see him, and only him. I’d felt a bump in my arm and was sure it was a tumour. That my cancer was spreading, becoming something solid.
When he didn’t respond to his pager, an announcement went out over the entire hospital PA system requesting that this doctor please come to my room as soon as possible. After twenty minutes or so—he might have been in surgery or something, I have no idea—he came to my room, quickly but not rushing. He listened to me, felt around the lump with a thorough tenderness, and after careful reflection he said the bump was not a tumour, it was just a belated reaction of a vein to of one of the peripheral IVS I’d had. The vein was temporarily clogged. This wasn’t a symptom of my dying, he promised me, at least not in the way that I’d feared.
My underlying question for him was: What next? If I leave here, will I live? If I leave here, how long for? If I leave, will I ever be truly well again?
Just like being able to accept that I would stay in the hospital for six months and then be cured, I was also able to accept that I would always be vulnerable to sickness. These two truths didn’t contradict one another in my mind: they were two sides of the same coin. I believed that, after the cancer had been eradicated, I would need regular, perhaps aggressive maintenance. I never wanted to leave my body unwatched. I expected I’d always have to sleep with one eye open.
“How do you imagine it going?” the doctor asked me. “If you were going to be always on alert, what would that look like?”
“I’d come and get blood tests and full-body CT scans every week to make sure there were no cancer cells developing,” I said. “For the rest of my life.”
He nodded. “That kind of thing wouldn’t be necessary,” he said.
At the time I took this as a good sign—a sign of hope—but I realize now that it was, in fact, completely neutral. Not a promise at all.
The road trip starts on a Friday in May, and on Monday, we have our first minor disaster. That day, we stop for lunch and a walk in Grand Falls, a stunning natural gorge in New Brunswick. The churning, eternal chaos of the waterfall reminds me of the power and mystery of the natural world.
We plan on setting up camp for the night on Crown land in northern New Brunswick. Shortly after leaving Grand Falls, though, on the highway towards the forest, we lose cellphone reception. It doesn’t come back.
“Does that make you nervous?” I ask.
“No,” Cal says, “why would it?”
We approach the unnamed, unpaved road he’s flagged as a potential camp spot, but it’s steep, covered in snow, and leads to a visible dead end.
“Let’s try the next one,” I suggest.
The next one doesn’t look much better, but it has less snow and less of an incline, and Cal thinks the van can handle it. It can’t, and we spend the next two hours trying to fill the wet ditches with snow, wedging sticks underneath the tires and pushing the van while reversing it. All this shifts us by about a foot, not nearly enough.
Night is falling, and we are stuck in mud in a snowy forest off an unnamed road with no cell reception, a hundred kilometres from the nearest town. For the second time that day, I am reminded of the power and mystery of the natural world.
The isolation makes me nervous. The dogs are wet and filthy from the swampy ground, the damp, dark forest makes the van unbearably cold, and I won’t be able to hop out of the van in the night to pee, as I need to do every few hours. In this moment, we can’t “just be”; we have to “just do.” We need to get out of there. At this moment, it feels to me as though the van—this literal and symbolic home—has let us down. My grief is perhaps weighted more towards the symbolic than the literal, but my sense of urgency is compounded by fear and wanting to protect our unborn baby.
I tell Cal to walk back to the highway and flag someone down to help us, and the first person who drives by stops immediately. While François, a former tow truck driver, doesn’t think he can help us get the van unstuck, he is willing to give us a ride.
“All of us? Including the dogs?”
All four of us hitch a ride to Miramichi, the nearest town, which is ninety minutes away. In Miramichi, I say to myself,
we will be able to get reception and call for a tow truck. We will be able to eat and sleep and be warm again.
François drops us off at a hotel in the industrial outskirts of the city. There is a huge NO PETS sign at the entrance, but seeing us walk into the lobby at eleven p.m. with no vehicle in the parking lot, the receptionist reads the desperation crumpling our bodies and books us into a room at the far end of a quiet hallway.
Once we get into our room, Cal calls CAA and, within minutes, a tow truck is there to drive him back to the middle of the mint-gum green hexagon where we’d landed on the Google Map. I stay with the dogs and order pizza from the only place in town that isn’t closed.
Lying in the hotel bed, the exhausted dogs wrestling each other to sleep, I text a friend. I am still deep in lingering anxiety, but also a kind of shame at having wound up here, in what feels like a worst-case scenario. I have the fear I sometimes get about there only being one right way for me to live, and that we’ve made the wrong move.
She responds:
How can you be upset? You’re in the perfect situation! A warm bed with pizza! And this is what you signed up for! This is an adventure!
If it’s information I’m legally supposed to tell my dentist then it feels like an omission to not tell new friends, first dates: a warning, almost. This is part of my weather system, written into my personal constellations, something I think about both all the time and not at all. A baseline. A starting point.
I moved away from home when I was eighteen, just two years after my treatment ended. I studied at a university a thirty-hour drive from where I’d grown up. Though I didn’t consider this at the time, looking back I can now see I was wanting to experience as many things as possible. I was hungry, thirsty, insatiable, and the danger of relapse was like my shadow, at my heels. I was also running from a world where everyone knew I had been sick, which is ironic, I know, when all I wanted to do was tell all the new people I met about how I had been sick.
Natural Killer Page 5