Natural Killer

by Harriet Alida Lye

  IMPORTANT NOTES

  HARRIET’S PATIENT ID: 1200174

  To use laptop computer:

  1) Plug in power adaptor

  2) Turn on PC

  3) password: childlife

  Lower limit of red cells: 70-80

  Platelets ~40

  THEN THEY WILL TRY TO DO A TRANSFUSION

  Thursday May 30th 3pm: Harriet’s braces to come off b/c mouth sores

  List of things to bring:

  • hair elastics

  • coat hangers

  • phone cable

  My cousin in England set up one of those old-school websites for me, with a forum and picture galleries and a visitor counter on the home page. I would update it myself sometimes, but it was more often my parents who wrote. It was a helpful way for them to deflect acquaintances who asked after me in the grocery store: “Just check the website,” they would say, not wanting to talk about it any more than necessary.

  At the recommendation of the medical staff, my parents kept a journal in which they could record, hour by hour, everything that happened every day so as to go back to it later to check for patterns, or side effects; or perhaps just to have a purpose, something to do when they were alone with their thoughts in my hospital room as I slept.

  They started the journal on the eleventh day. It’s a pale-green, spiral-bound notebook with yellow-and-red parrot tulips on the front, with disproportionally sized animals—a tiny turtle, a giant ladybug—among the foliage. The journal’s original job was to sit beside the phone in the kitchen and receive messages; the first few pages were ripped out when it found its new purpose.

  There’s a pink Post-it Note sticking out about a quarter of the way through that doesn’t seem to be flagging anything specific, some business cards of social workers and hospital teachers interspersed among the pages, and at the back is a table my dad made to keep track of my daily blood counts: white, red, platelets, and polymorphs/neutrophils, the white blood cells most closely monitored during my treatment as they indicate whether or not the body is capable of fighting infection. Often the white blood cells were at less than one, so the neutrophils were untraceable. My mum bought a parrot puppet from the hospital gift shop that she called Polly, to celebrate, when the time came, the return of the polymorphs: “The polys are back, the polys are back!” the parrot would cry on behalf of my mother.

  My parents took turns being with me, and writing in the notebook: everything that happened was documented. If an aunt or friend came to offer respite for an afternoon or evening, that person would take over the record-keeping. While the notebook started in earnest on June 4, I found notes my dad had gone back to write later on the last page of the book, annotating the major events of those first few days for the Official History, starting on his birthday.

  SUN MAY 26

  Awaiting Bone Marrow Aspirate. Negative for Mono in all tests so far.

  MON 27

  Bone Marrow Tests. News of Leukemia, in 7C all together. Shock, then regaining composure.

  TUE 28

  Awaiting tests to determine ALL or AML. 4pm diagnosis of AML. Also heart echo.

  My dad’s authorship over these days is so simple, certain, and nuanced. That he wrote “Shock, then regaining composure.” It echoes the doctor’s progress report—Shock, reaction.—which my dad would definitely not have seen. Whom did he write that for? How does one determine “composure”? Did we all really regain our composure so quickly? Once that announcement was made, was it never to be lost again?

  Also: “all together.” The three of us, our tiny family unit. And his noting, for the record, our small, retroactive hope that it would be ALL—the one with a higher survival rate—and how that hope shattered at precisely four p.m.

  My parents have a home video of my ninth birthday party where they ask all my toothy nine-year-old friends what they want to be when they grow up. A lot of dance teachers, a lot of lawyers.

  When it comes to me, I think for five full seconds (I’ve timed it on the video), rolling my tongue around behind my lips. Then I mumble something to my mum, almost privately.

  “Louder, Harriet,” she says. “Tell us—what do you want to be when you grow up?”

  My dark hair is tied in a low ponytail and I’m wearing stick-on pearly earrings. I repeat my answer, this time a little louder: “an artist.” Then I look down at the table, smile, and pick up my juice box.

  On camera, looking at myself now, I think I look equal parts bashful and pleased. Like I’d reached the right conclusion, one I was privately thrilled about, but one that I knew had embarrassing connotations.

  At this point, was the cancer already lying in wait?

  My friends came to visit and said I looked beautiful, more beautiful than usual. I had been wearing the same pyjamas for a week, my hair was so dirty it was dreadlocking again, and I had no need or desire to wear any makeup. I obviously thought they were trying to be nice, but the tone of their voices—not just surprised but skeptical, as though I could somehow be lying about how sick I was—confused me. As the chemo was burning through my blood, I can see in photographs that a sense of calm had come across my expression. I do remember feeling a certain purity at that time—an unquestioning devotion to my being there, to surrendering my body to the medical system. My whole purpose was to get well. I didn’t have to do anything else.

  Looking at the photos now, I think I see what they might be talking about. It’s when flowers are closest to death that they are in their fullest bloom.

  The walls of the eighth-floor bedrooms were peach and green, and there was a small, uncomfortable “sofa” that turned into a bed. My parents took turns sleeping there every night—they called it the Changing of the Guard. One of them was always with me, the other one alone at home.

  The bedroom I stayed in quickly filled with photographs and decorations. My aunt gave my classmates a bag full of disposable cameras and told them to document their days, the ordinary days I’d been living up until a few days before. Posing in front of hallway lockers, running across the soccer field, bright flashes on pale faces in the dark drama room. The printed photos were tacked up on my wall, on all the walls of every room I was moved to. I had three boxes of decorations that we’d lug around, filled with yellow streamers and drawings by my young cousins.

  My bed was on wheels and had metal barricades that could be raised or lowered, and a button to bring the back up into a seated position. I tried not to think about the fact that my bed was also a stretcher. There was another red button right next to the bed, too, which functioned like the buttons on airplanes to request a flight attendant. The button sent a page to the nurses’ station, the nucleus in the centre of the ward from which the various corridors branched out.

  A TV hung from the ceiling, and at first, I was excited to watch all the daytime television that being at school normally precluded. Dawson’s Creek, The Price is Right, cartoons. I quickly grew bored with all that, though, and stopped watching TV after a week or so.

  Friends would ask how I spent my days. They couldn’t fathom how time passed for me, and it’s hard to say, now; it was hard to say then. But scanning through the journal, it strikes me that there’s something happening every twenty minutes or so, at least. Doctors came to examine me or prescribe medications; pharmacists came to explain side effects of medications; nurses came to take my vitals and give me medications and transfusions. Visitors were often coming by—friends, family, people we got to know in the hospital. I was sent to get ultrasounds or X-rays or some other kind of test almost every day, too, and that could take hours: getting ready, being transported there, waiting for the test, having the test performed, then waiting for a transport worker to bring me back. I was always being given food, always trying to sleep. The in-house clown, Posy, came to visit weekly. She didn’t talk, which I liked.

  On the back of one
of the lunch menus, which came on long, narrow parchment-style paper with perforated, hole-punched edges, my dad wrote a list of things I could do in the months that extended before me.

  THINGS TO DO IN HOSPITAL

  Watch TV

  Learn a new language (eg Spanish, Italian, German, Latin) from tapes, books & people

  Learn to knit (to make scarves etc for friends)

  Write stories, or plays, or essays, songs, just for fun & to let stuff out (like Dumbledore’s Pensieve)

  Learn to play chess, or Mahjong, or?

  Read interesting books, for fun & to satisfy curiosity

  Use hospital library for medical research

  Connect with other people in this hospital, or others, for mutual support

  Develop drawing & painting skills (why not)

  Sleep (of course)

  Exercise

  Write letters to people, everyone loves to get mail

  Make your own Individual Education Plan for the first part of grade 10, after checking resources and curriculum on the web

  Explore the whole hospital

  Learn a new musical instrument (eg guitar)

  LOTS, LOTS MORE

  There is hope in a list, and such an urgent hope in this one. Live, Harriet, do all of these things, make it through your time here, live, please live, and do lots, lots more. Why not. Of course.

  The surgery to insert the central line happened on the eleventh day—June 4. As I said, this was the first day of the journal.

  A central line is a “central venous catheter” inserted into a large vein—mine was the jugular—to facilitate regular and easy access to the bloodstream. It’s like a port into the body. We had been told that the procedure was fairly dangerous, as general anaesthetic and a full-on surgery are riskier for people with compromised immunity.

  The insertion of a central line felt like admitting something I’d been trying to keep at the margins, though I was assured that it was just protocol. The nurses reminded me that the peripheral IVS in my forearms were annoying and painful to replace, and the chemo burned through the veins so quickly that they needed to find new veins regularly, sometimes many times a day.

  My mother’s writing in the notebook:

  Central line scheduled today. Needed platelets & packed red cells—A.M. platelets still not up to 100 (66) but will be proceeding at 1pm.

  1:50 Dr. Mavrou re. Central Line

  Dr Ross—anaesthesiologist? Good name for H’s first born!

  3:15 Dr Mavrou says H is fine with blood counts now! Good to go

  Lying on my back, bright lights spotlighting my body, the masked face of the anaesthesiologist floating directly above my face.

  “Count backwards from ten,” Dr. Ross said.

  I doubted him. I felt defiant; if I wanted to stay awake, I would.

  I was gone by eight.

  Then, in my father’s hand:

  4:15 in recovery room, after Double Lumen line inserted. No problems.

  6pm chicken fingers and fries.

  When I woke up in the recovery room in my own bed (another reminder that my bed was just a stretcher that could be moved around the hospital), my body felt different. I was still wearing the same hospital gown and sweatpants, but my body didn’t feel quite like mine.

  Looking down, I could see tubes coming out of my chest that were about as long as drinking straws. The same matte white, too. The knot of plastic tubing lifted the chalk-white flesh, making my skin look remarkably like rubber. Blood scabbed around the point of entry, covered with a thin patch of clear medical tape. At the bottom end of the white-straw part, clear plastic IV tubes twisted on to attach to the pump, and to any bag of fluid that needed to be hung from the pole. I assumed that they—the doctors, or the designers of the device—kept it opaque up high because of how blood has the tendency to ooze out. An important rule: never let patients see their own insides.

  In the bathroom, I lifted my hospital gown and saw brown lines drawn on my skin. Iodine lines, to sterilize—and to demarcate where the veins were? I don’t know. Maybe. I was never told. I never asked; this was just my best guess.

  I felt embarrassed. I felt violated. People had seen me naked. While I was unconscious, they had painted on my body.

  Further evidence that I was theirs. Their patient, their subject. Nothing was mine anymore.

  Since I wasn’t supposed to be alive, I wrote in a journal a year after being released from the hospital, all of this is bonus time.

  I was surprised by how loud things were in the hospital. My IV pump would beep, and when it wasn’t beeping, it was breathing: the sound of suction and liquids passing through created a constant rhythmic accompaniment that sounded almost human. While I had a door, nobody who worked in the hospital ever knocked. Anyone could come and go, take my blood, take my temperature, take my meal tray away; they could even take me—down to a different floor for a scan, to a different room for a tubing change.

  Announcements came through the PA system from eight a.m. to eight p.m., separate announcements from within the unit and throughout the whole hospital. Doctors being paged, nurses being sent to specific patients’ rooms. The patients were never mentioned by name, only by room number. If I pressed the red button next to my bed, the receptionist would call out: Jen to room 24 please, Jen to room 24.

  The one I heard most often was: Keys to the desk please, keys to the desk. The narcotics were kept under lock and key and there was only one key, held by one specific person each shift.

  I asked a nurse what a narcotic was. “Morphine, codeine, cocaine…that kind of thing.”

  “You have cocaine here?” I’d heard of cocaine before, obviously, but from what I’d heard, I did not think it was the kind of thing that would be prescribed to kids with cancer. “What do you use it for?”

  “When nosebleeds get really bad,” the nurse started, then looked at me tentatively, wondering whether she’d said too much but realizing it was too late to stop now: “well, we can create a mixture using cocaine to paint into the nostrils—it constricts the blood vessels and can slow the bleeding.”

  The hospital-wide pages were reserved for more serious codes, which I quickly learned: yellow was for missing persons, blue was for heart attacks.

  “Kids can have heart attacks?” I asked the nurse.

  She nodded.

  SUNDAY JUNE 9

  Harriet said “one good thing about being here is there are no spiders!” Watched Dirty Dancing ’til midnight

  The first round of chemotherapy lasted two weeks and continued through the central line, so the drugs no longer burned my veins; I couldn’t feel anything through the permanent IV. The symptoms were as you would expect. It was so hard on me physically that I was able to elude the emotional consequences.

  I developed a fever partway through that first round and, for reasons that everyone tried to keep from me, this was a very bad thing. I did understand that fevers meant infection, and with the chemotherapy knocking out my immune system, any kind of infection caused concern since there was nothing to fight it off. I reminded everyone, including the doctors and nurses, to Purell their hands before coming into my room.

  I lost nineteen pounds in those two weeks. The nutritionist, a tiny woman with giant curly hair, told me that to keep up with the weight loss I should eat as many Häagen-Dazs bars as possible and replace the milk in my cereal with cream. She asked what my cravings were.

  “Blueberries,” I said.

  She laughed. “You need to want to eat, like, hamburgers and ice cream.”

  I had to be started on intravenous nutrition supplements. One huge bag of urine-coloured liquid, and one small bag of opaque white liquid. Vitamins, and fat. It was called total parenteral nu
trition, or TPN. My nurses reminded me that this wasn’t an excuse to stop eating, that I should still try to eat whatever I could, and that hopefully I could get off the liquid food soon. It was hard on the liver, they said, but I think it was probably harder on the spirit. Eating is more than sustenance. It’s community, it’s pleasure. (Like the neighbourhood meal plan a family friend organized for us. People signed up to take turns making all three of us dinner every single night, which gave us all such a strong sense of both community and pleasure, even if I couldn’t eat.)

  Friends came all the way downtown, about an hour by car or nearly three on public transit, and sometimes I was too sick to see them. My parents would say hello, then turn them away on my behalf. I didn’t have the energy to feel guilty.

  My friend who played Heracles—“I fought with the God of Death”—came to visit often. When I was well enough to see him, he’d ask if he could hug me.

  I said no. “Germs.”

  Young Heracles bought me a four-foot-tall purple plastic gerbera daisy that was balanced in an iron frame. Later, a doctor on his rounds said, very seriously: “You know flowers aren’t allowed, don’t you?” My dad laughed until he had tears in his eyes.

  Cal and I met at the dog park in the spring, when we each got our puppies—my Fox, his Disco. Cal has Windex-blue eyes and, from the first time I talked to him, I could tell he was shy but self-assured. Fox and Disco loved each other immediately and fervently, the kind of love that comes only from animal instinct. They’d play under the picnic table in the park to hide from the desert-like summer sun, gently gnawing each other’s mouths.