Natural Killer

by Harriet Alida Lye

  Crying, still crying, I try to pick apart my feelings and figure out what’s making me sad, or scared, or whatever feeling it is that’s making me cry. Naming the feeling can make it an anchor too, in its own way; naming something puts me in control of it, just like narrating does. I feel…I don’t know. Vulnerable? Aware of my body as a fallible sack of flesh? Triggered by the memory of losing control of my body completely?

  I cannot name it. It is beyond me. I am still crying.

  My heart inside-out reminds me of a grapefruit that has been peeled. It is sacrilegious. But this metaphor doesn’t work because grapefruits are not holy.

  You know that feeling when you know you got the right answer, aced a test, understood why someone has been treating you a certain way even though they haven’t explained it? This is what I’m after, lying on this cot. I can’t get there.

  After forty-five minutes the sonographer tells me he’s finished, and that he has taken 102 pictures of my heart. I see one on the screen, and it doesn’t look like a heart at all.

  Owen was getting sicker. Owen never left the hospital. It wasn’t my business, and nobody should have told me anything, but somehow I heard that the doctors just weren’t finding the source of his tumour. The cells in his blood identified the cancer as a solid-tumour type found in the muscles, and he was being given chemotherapy to try to treat and shrink it, but they couldn’t find the tumour to either operate or radiate.

  I wanted to say something to him. I don’t remember what I wanted to say to him, but I walked in there knowing I wanted to say something. I knocked on his door—unlike the medical staff, I always knocked—and a voice that sounded much stronger than he looked said “Come in.” The lights were off in his room. His skin looked bluer. His limbs underneath the sheets reminded me of sand dunes.

  I got a letter from one of my favourite nurses that night. I hadn’t noticed that she’d come into his room to hang meds from his IV, or start a blood transfusion, or whatever it was she’d done. I was so concentrated on him, and without the overhead lights on, it was shadowy in the corners of his room. Her letter, which I still have, was handwritten on a small piece of yellow paper, folded in half, with a flower doodled on the front.

  Dear Harriet,

  I hope you don’t mind that I overheard you talking to Owen today, but I was in the room when you were speaking with him, and I wanted to tell you how much it moved me. You talked about bravery, and how he didn’t need to be brave, he just needed to not give up. You spoke with such grace and compassion, I’ve never heard anyone talk like that, let alone a patient of mine. You are a wonderful, inspiring young woman.

  xox, J

  The body experiences fear long after a threat has passed. Even if you’re held up with what ends up being a toy gun, the rush of hormones and adrenaline are real, and will remain in your brain and bloodstream, temporarily overriding conscious thought so that the body can divert all of its energy to facing the threat. The fear is real even if it was triggered by something imagined.

  If you’re diagnosed with a fatal illness and then you survive, how long does it take for the body and mind to reconcile conscious thought with the disappearance of the threat? A lifetime, or less?

  Round four of chemo started on August 19, after the infections and fevers had passed and my blood counts had become high enough to shoot back down. Here’s what the first twenty-four hours looked like, according to my dad’s notes.

  DL & HL to clinic, before 8:30!! Finger poke 8:55am. Blood counts: 3.5, 111, 253, 117. Very good numbers. 49.0 kg (108 pounds)

  More peripheral blood taken at 10am, for checking clotting factors and need (or not) for Fresh Frozen Plasma. Saw JP in clinic.

  10:20, Dr L for a look at HL, no need for FFP

  11:30, Harriet hooked up to IV for glucose and saline. A room is available in 8A

  12:40pm for BMA and LP (Bone Marrow Aspirate and Lumbar Puncture), out at 12:50

  1:20, Morphine dose started in IV, and O2 sensor attached as well. To room 8 in 8A. Busulfan instead of radiation.

  4:30, blue chemo started, only about ½ hour for it to run through. Once per day for 5 days. Anti-nausea drugs also.

  5:15, Ara-C started. Twice a day for 3 days. 5pm and 5am.

  5:20, Eyedrops given by DL, one drop per eye 4 times a day. Technique: HL flat on bed, eyes closed, drop fell on side of nose and ran into the eye.

  Irene is nurse tonight.

  Daisy was nurse today.

  9pm, Harriet getting ready for bed.

  Septra and Fluconazole tablets delivered and taken + one Tylenol for headache.

  Asleep about 10:30 after story-time.

  2am, temp normal

  5am, Ara-C

  Krista is our nurse today

  Ondansetron running at 8:30am

  Sleeping with earplugs meant that, for the story-time my dad notes, he had to speak loudly enough to go through the earplugs, sitting close by my side.

  “You’re yelling,” I’d shout.

  He’d adjust, then continue.

  “Now I can’t even hear you.”

  He’d adjust, then continue. In this near-nightly routine I put my parents through, neither of them ever expressed exasperation.

  With the morphine drip, I was able to administer my own pain relief (to a degree: it maxed out at a certain point, though I was too nervous to ever get near that). I was told to punch the button whenever I hurt. This was my first time taking a narcotic so consistently, and it made me feel strange. The drug seemed to transform the world, rather than soften it—I didn’t feel at home in the distorted reality it created.

  The morphine pump is visible in a photo of me lying in a CT machine, one of my nurses standing next to me to funnel all of the tubing and monitor my vital signs during the procedure. In the photo you can see the top of my head, and I’m wearing a navy-blue bandana. I don’t remember ever allowing bandanas. They felt like the equivalent of putting Band-Aids on an amputated leg. My hair, I haven’t mentioned this, was thinning more dramatically by this point. The fact that I had held on to my hair for far longer than expected was a point of pride, but also enabled me to feel normal. If I looked normal, both to myself and other people, then I could be seen as normal. But now I was succumbing to the prognosis and this felt like a failure. Chemotherapy targets cells that divide and multiply quickly, targeting cancer cells but also hair follicles, and my body was obeying, rather than defying, the directive it was being given. This was the goal, and yet—

  Looking again at the photo, I see my arms are up behind my head, extended on the infinite stretcher. There are probably thirty cords and tubes connected to me: the IV with its two blue pumps; an oxygen monitor on my index finger; and then some white tubes connecting me to what looks like an Easy-Bake Oven, a portable monitor to show the levels of my oxygen and blood pressure.

  I wasn’t allowed to move, and my body hurt. I had to hold my breath while the pictures were being taken in order to prevent even the subtle motions of breathing from blurring the image. There was an intercom in the machine, so I could hear when the technicians needed me to inhale, and then when I could let it go.

  The conversation around my future fertility continued, still outside of my awareness.

  August 20, my dad’s handwriting:

  Toronto General Hospital does do ovarian surgery using keyhole method. Various ethical questions, in general. No successful pregnancies yet, in humans, after this procedure. Need to ask more questions of Dr. D. Procedure is still being done at Toronto General, for adults, in the hope of better technology for the future? Procedure is removal of one whole ovary, cold storage, then re-implantation after treatment is over.

  As it was explained, this act was hopeless at present, but undertaken in hope for the future. I do remember being asked my thoughts on this, but I don’t remember caring. I couldn’t put my mind that far ah
ead.

  I wonder what ethical questions were presented to my parents. I mean, we were already allowing the doctors to play God. Where do you draw the line?

  The first successful pregnancies after this procedure occurred two or three years after I was presented with the option, and even today, ovary freezing and re-implantation is considered radical and experimental. But sometimes all you want is a chance—a reason to hope.

  At the obstetrician’s recommendation, Cal and I sign up for “birth class” at the hospital where I’ve chosen to deliver the baby. I find the term hilarious. Nobody can teach you how to give birth; it just happens. Animals aren’t taught, and they manage just fine. I learn that 251 babies are born every minute, and I bet most of the women giving birth to them have not taken a class to learn how to do so. The body, as always, knows what to do.

  It turns out that birth class is mostly designed to make first-time parents aware of how what intuitively seems not normal is, in fact, normal. If your baby’s hands and feet turn blue, that’s normal. If your baby’s whole body turns red, that’s normal. If your baby poops green or orange, that’s normal. What surprises me is the tour we take of the maternity wing. I have to hang back from the group and when Cal asks a question I nod and smile with my lips closed, knowing that if I open my mouth I will cry.

  When we leave and enter the dark fall night, I finally burst: “it’s just…a hospital!” I cry. We’re walking through a garden of roses on our way home.

  “I know that,” he says. “Didn’t you know that?”

  “I guess,” I say, trying to slow down, “but it just feels so much more…hospital-ish than I thought it would.”

  What I’d wanted was a beautiful hotel filled with medical staff and all the necessary emergency equipment present, but hidden. The rooms we’ve just seen look just like every hospital room I’ve ever been in. The same tubes and pumps, the same dingy fluorescent lights. The same smells, of antiseptic and microwaved meals. Even the same model of IV that I’d lived alongside fifteen years ago.

  I want my baby born in a hospital because I know what can happen if things go wrong, but I want my baby born at home for the same reason: if things go wrong in a hospital, you lose control, and this time I haven’t chosen to surrender.

  Partway through the fourth round, I was discharged from the hospital but the chemotherapy continued. My dad did some brief training to learn how to flush and sterilize my IV lines and then seal them with heparin, an anti-coagulant, so that the lines would stay open to my bloodstream in case I had to be hooked back up to the pump. The only chemo I had to take was a pill, twice daily. My parents tried to create a fairly normal rhythm for us, but this was hard. I was throwing up all the time, had terrible headaches, and couldn’t sleep. I had prescriptions for several different kinds of sleeping pills, but they didn’t always work.

  Four days after going home, my temperature spiked. My dad drove me back down to the emergency room. I was admitted instantly and underwent a litany of blood tests. I felt myself spiralling. I was shaking, my jaw locked and clattering, and I couldn’t stop. In the journal, my dad described this as a “spell of shivers.”

  Nursing note from my progress report:

  August 28, 2010h, received pt awake shaking in stretcher covered by blankets. Pt’s face is pale + lips are blue. Pt said “I’m cold.”

  There was a corridor. I was lying in a stretcher, being pushed down it. I could see the beating of my own heart through the skin of my abdomen, so strong it was making my t-shirt bounce. The hallway lights were blue-tinted. Someone asked me if I wanted anything to eat, and I said blueberries. The nutritionist kept telling me I’d never put on weight if all I ate was blueberries, but that was all I wanted.

  I was on my back, looking at the ceiling tiles as they whizzed by above me, seeing their shapes morph and twist and blur together.

  “Do you see that?” I called my dad over and pointed to my shirt. “My heart is beating too strong.” Watching it only seemed to make it go faster.

  I closed my eyes. I couldn’t look at my heartbeat anymore, worried I would see it suddenly stop beating, wondering how long it would take between me seeing it stop and then not seeing anything anymore.

  The nurse was called, she called one of my doctors, on call and at home, and a different doctor came to look. My dad wrote:

  some discomfort…some anxiety…IV fluids had been cut down, Harriet seemed to be getting a bit dry, and the heart compensates by beating harder. So IV fluids increased.

  Was that really all it was? I was just thirsty? How can you explain when something is more than just one thing?

  The blood test results came back and I was told I’d contracted E. coli from my own gut. A compromised immune system can’t fight off naturally occurring bacteria. My body didn’t recognize itself. My body, once again, had turned against itself.

  Mum’s handwriting:

  Nothing exceptional about H’s condition, doctors said—just the patient is exceptional!

  Writing the journal was a way my parents were able to control the experience—to keep track of it, to put it into their own words. Writing this story as fiction was an attempt to take power over it, too. Does that mean that writing it as non-fiction is surrendering?

  I trusted that lightning wouldn’t strike twice, and over time this came to feel like a kind of immortality. Ten years after I’d been living in remission, a young Australian resident doctor told me at my annual check-up that I now had the same likelihood of getting cancer as anyone else. My relief spilled over; I cried, crumpled; from then on, I let my guard down. I was given the opportunity to be ordinary, and my normal life was magnified, magnificent, when seen through the lens of the abnormal.

  Two years after that, two events converged that made me realize I was not immortal at all.

  1: My grandfather died. His death was expected; he was old, had been weary for years, and my granny often said how he would beg for death to relieve himself of the constant pain of living. But when his death actually came, I was stunned. I knew it was coming, I just never believed it would arrive.

  2: The day after my granddad died, I was diagnosed with pre-cancer of the cervix. (“Pre-cancer” is such a strange term. The notion of pre-anything is odd, really, because it’s a hypothesis, or a promise, rather than a state in itself. I remember walking through the quad of my small liberal arts college and hearing one guy say to his friend: “What does pre-law even mean? Why do you tell people that? I could just as easily say that I’m pre-banging your mom.”)

  I was in Amsterdam at the time and, unable to sleep, checked my email in the middle of the night. There was an email from my dad with the title “Letter from OHIP – for careful reading.”

  Hi Harriet,

  A letter came for you today—so I opened it, later to find a notice ‘to be opened by addressee only.’

  All pages scanned and attached, in both English & French. We thought the French might be handy for follow-up there.

  One letter, and 2 pages of Notes, in each language.

  Please read carefully, and digest. No panic, but follow-up required.

  Let us know if you want to talk over the options for follow-up.

  Love from both of us

  Dad

  xx

  I clicked the first of six attachments. “I want to thank you for taking the time to get a Pap test done. I am writing to let you know that your recent Pap test result is abnormal.”

  My first reaction was that “abnormal” meant that they hadn’t obtained the right sample, not that the sample itself was abnormal. Which is incorrect. I continued reading: “these abnormal cells usually change back to normal on their own and are almost never cancer.”

  Which party had decided to bold these words for emphasis? The doctors, or the communications specialists?

  I was in bed beside my then-par
tner, still sleeping, and in the next moment I was out of the bed, on all fours, doing all I could to breathe. There was no reason for anyone to be awake at this time of night if they weren’t already.

  I’d already been through the almost never. I’d already come through the other side of abnormal. My body, it turned out, was still not on my side.

  It broke my heart that my parents had been the ones to receive that letter, that they’d have discussed between them what this news meant, what they should do, how they should break the news to me. My dad’s choice of words: “No panic.” Not “don’t panic,” or “no need to panic.” Written quickly, an attempt to be neutral maybe, or to encompass all three of us. No panic here. Nobody is panicking.

  I was beyond panic. I was already at the point of giving up.

  I wrote to a friend: “What’s strangest is that, through the passing of the years and telling anecdotes about my experience, and writing fiction based on it, the whole leukemia thing seems distant and acceptable. I’ve rationalized it, and remember mostly feeling very strong and defiant. But when I read the letter, I realized that remembering myself as strong must be a coping mechanism of some kind, because I honestly don’t feel strong at all right now, and that year, and many years following, truly were the worst experience I could possibly imagine, and thinking of having to go through it all again, well, I would simply rather not.”

  I was suddenly able to see that what had, at fifteen, felt inevitable—or at least like my only option—was more of a choice than I had realized. Back then, I’d chosen to remain blinkered and focus on the light. This time, I saw the barrel of the gun and I did not want to look away, or keep walking. Like passing an accident on the highway, I slowed down and couldn’t stop staring.