Natural Killer

by Harriet Alida Lye

  1:15am: Rigors from ampho. Given Demerol.

  3am: Rigors again. Given more Demerol.

  It felt like my rib cage was closing in, my lungs aching from the squeeze. I loved the Demerol, though. It made my whole body melt and all pain go away. At one point it was noted that though I had “no real rigors, H thought she needed Demerol to avoid them.”

  More tests: I had to drink radioactive liquid called “contrast” in order to make my intestines show up more brightly in a CT scan, and it made my pee burn. I was told I’d need a third IV inserted into my foot so that they could give me more blood transfusions, but when my nurse saw me panic at this prospect, she convinced the doctors to just wait an hour and she would find a way to use an IV I already had, flushing the potassium infusion with a bolus of saline in order to clear the lines.

  No conclusive results came from this scan either.

  Two weeks after the antibiotics began, my fever was still uncontrollable and spiking every few hours, as soon as the Tylenol wore off. The drugs were wearing me down. The doctors needed to find the source of the infection in order to obtain a clear sample of what it was so that I could be treated more effectively.

  Another procedure: a bronchoscopy was ordered to biopsy a few cloud-like patches appearing in my lungs, and this would need to be done under another general anaesthetic. A bronchoscope would be inserted down my throat to pass through my trachea and scissors would be attached to the camera so that the sample could be snipped and extracted.

  My throat hurt for days afterwards. This biopsy, too, provided no conclusive results.

  They tried hormone injections, blood transfusions, new antibiotics, a new pump added to my IV to distribute more drugs, pain relief administered with stick-on patches—like a nicotine patch—so as to free up the IV lines. More fevers, more rigors, more vomiting.

  Retreating, the doctors considered their next plan of attack.

  Is it too “on the nose” to point out to you that I was sick for nine months, the same amount of time that it takes to gestate a baby?

  For the first few weeks, both cancer and the baby are silent, invisible; there are felt sensations but they are slippery, not to be trusted.

  In both illness and pregnancy there is a sense that my body is not wholly, exclusively mine. My body has been occupied. Occupy is a metaphor used in war, which is what comes to mind first, but what I mean is closer to tenancy. I mean inhabited more than I mean dominated. My body is the house.

  After giving birth, many mothers experience a feeling of loss, of their own selves being split and divided. This seems intuitive to me. I can see how easily I could slip from that sensation into something deeper. A friend sends me an article on recommended supplements to take to prevent what’s called “the baby blues”: tryptophan, tyrosine, blueberry extract, and blueberry juice.

  “You’ll just have to shovel blueberries down all day,” she says. “Doesn’t sound so bad.”

  Brought gift for Owen’s family but he had passed away.

  Beneath that line, my mum wrote his family’s last name and home address—that must have been given by one of the nurses, though I know that’s not allowed.

  And that was it. Owen was dead. His name was wiped off the patient whiteboard near the nurses’ station, and his family had no reason to ever come back to the hospital. The doctors had found the source of the tumour too late, and it was inoperable: the muscle-based solid cancer appearing in his blood was blossoming behind the hardest-working muscle in the body—his heart. I don’t remember learning any of this information, I just remember knowing it.

  I Google Owen now, along with the town where he lived, and find a picture of his gravestone. He died four months before his seventeenth birthday. His gravestone, pink quartz, has an engraving of Terry Fox, mid-run, and along the bottom is written, “Absent From The Body, Present With The Lord.”

  It’s one of those gravestones with a picture on it, an oval-shaped colour photograph—his school portrait. He has a wonky haircut and is wearing a Tommy Hilfiger t-shirt. “Beloved Son,” the gravestone says. He looks so young in the picture, younger than I remember him being, although realistically it’s probably the last school photo he was present for, so he must have been at least fifteen. I can see now, though, that he was just a child. We were just children. I haven’t seen his face for over fifteen years and wouldn’t recognize him, then or now. His face, in my memory, is always in shadow, and blurred into fiction, into the many ways I tried to reconcile his presence and absence in writing. In the novel I was writing, his death was a catalyst for Bea’s death: when he died, she realized for the first time that death was a possibility.

  Lately Cal and I have been debating the idea of souls. He doesn’t believe in them; I’m desperate to convince him. I think what I want is for him to agree that the baby inside of me is more than just a random collection of cells. I feel a deep urgency that there be acknowledgement, a universal agreement, that something must be greater than the self. This desire runs parallel to my need to believe that it wasn’t just me, or my parents, or any one of my doctors, who was the bottom line on whether or not I lived or died.

  We’re spending the night near Little Manitou Lake, the only salt-water lake in Canada, a place where Indigenous people have been bringing their sick for centuries. The campsite is overcrowded, but when I walk into the lake and float, I am the only person in the whole body of water. I lie on my back, my belly rising like a moon over the waterline.

  I try a kind of cheap Socratic method. “Am I different from you?” I call to Cal, who is sitting on the sand at the shoreline. He doesn’t like to swim.

  “Yes,” he agrees.

  “And is Fox different from Disco?”

  “Yes, but—”

  “Can’t we call those differences souls?”

  When I say “soul” what I mean is a kind of animating force: life, I guess. The word comes from the Greek to breathe. Breathing life into clay, the touchstone of so many creation myths. The word smacks of godliness, though, and of all the justice and retribution that go along with that. The everlasting soul is what that doctor believed was being punished.

  The water is so cold but I’m already used to it. I stand in the shallows and feel the baby move, maybe his arms, maybe his legs; I can’t picture his body inside of mine. I read a pamphlet at the campground that explained how, when smallpox was ravaging the Cree and Assiniboine Nations around this lake, the sick migrated towards the shores and bathed in the water.

  More vehemently atheist than I am, Cal comes to agree, or at least I can get him to concede, that life is a soul, and as long as we are alive, our souls are involved. What happens after is a subject we do not broach.

  Eager to feel like they were helping in some way, my incredible network of friends and family organized, through a national charity, to participate in a five-kilometre walk to raise money for leukemia research.

  OCTOBER 20

  6:30am, DL up for early start on RACE DAY!

  8:20am, Mum arrives

  A group of fifty or so marched, with babies, balloons, and dogs, behind a banner made with sheets and Sharpie that said, in block letters, HARRIET’S TEAM. It was a cool fall day, overcast, and the photos my dad took are grainy with the dusk. Everyone is smiling, even in the candid shots, looking beatific with hooded sweatshirts and pink cheeks as they march on the quiet weekend morning streets of Toronto.

  After the walk, everyone made their way to the hospital, but I was too sick to see anyone. People had to wear gloves and masks in order to even enter my room, and I was sleeping more often than I was awake.

  Eight storeys down, people gathered. There are photos of my friends lying on the ground, the soles of their sneakers in focus and their faces away from the camera, talking among themselves. My drama teacher is in the foreground with his four-year-old son, pointing to students, explaining to his chi
ld what is happening. Then, from the other angle, there are faces in focus, heads placed on stomachs, forming new shapes. Knees bent, people pointing and looking up at my window.

  There’s one photo, taken from the ground, of the window at the end of my hallway where I was sitting with my mum and some nurses. It’s eight floors up, so difficult to make out the details, but I can see my mum with her bright, red-lipsticked smile in the middle bay window, and the glint of my IV pole next to her. She would have helped me put on my slippers and push my IV, not holding my hand as I wouldn’t have wanted to be treated like an invalid. It was my first time leaving my room in days. I only had the energy to stay for a few minutes. When I had to leave, she would have helped me lumber back to bed.

  The gathering outside was captured in a series of photographs by my mum from above, too, and from our bird’s-eye view, we could see what they were spelling with their bodies: first HARRIET, then WE U, and then everyone, all together, linked arms to form a giant, lumpy, left-leaning and beautiful heart.

  The bone marrow transplant had been encouraged by all of the international researchers consulting on my case, but as the infections in my body bore on, harder and harder, opinions started to change.

  As a consequence of my suppressed immune system, I’d already had E. coli, Klebsiella, human torovirus, and pneumonia. In addition to all that, the doctors gave a potential diagnosis of Aspergillus as the cause for the infection in my lungs and liver. Many of those things I’d never heard of and didn’t think about, so Aspergillus didn’t seem any different. But it was.

  Aspergillus is a mould in the air we breathe: it’s everywhere all the time, like radio waves even if you don’t have the radio on. If this mould was in fact the cause of my sickness, treatment would be an additional four to six weeks and the bone marrow transplant would have to be put on hold. In patients like me, the one-year survival rate with an Aspergillus infection was less than 25 per cent.

  My oxygen levels were dropping when I slept. I had to be put on a heart monitor and an oxygen sensor, and have tubes inserted up my nose.

  12:15am, some rigors, more Demerol

  1:15am, more rigors, more Demerol

  2:15am, rigors, Demerol

  Watched the clock hands move mysteriously to fall back one hour

  2:40am, rigors, Demerol

  Heart rate low, very sweaty.

  My memories of this time are practically non-existent. My body was a machine, simply being told what to do. Just as I did then, I must rely on my parents and doctors. On the notes they took, on the memories they have.

  I am becoming too pregnant to still be living in the van. The plan is that once we make it to Vancouver I will go ahead and fly home, and Cal will drive back with the dogs. We spend our last night together next to a glacial lake in inland British Columbia, the water the colour of a blue popsicle, the sun warm as a heart. I wake up first, before Cal, before the dogs, with a lump in my throat. I watch, through the screen window next to our top-popped bed, as the sky lightens through the trees. Life will never be the same again, and I am so happy living in this endless state of becoming, in the optimism—albeit also the extreme, sometimes palpitating apprehension—that comes with waiting for something to happen. Soon, though, everyone else wakes up and the day starts happening, and I am living instead of worrying about living.

  October 22: It has been a challenging time for Harriet recently, which is probably why I haven’t posted an update. I find it easier when things are more upbeat. But you all need to know what Harriet is going through, and how you are continuing to help us all along this journey. Last Sunday was amazing—the walk for leukemia was an emotional time for us all. To see all those friends and family members below her hospital window was so uplifting. An incredible memory we shall treasure. The counts are not in for how much the walk raised, but we will let you know what a difference Harriet has made through the donations that were made in her honour—by people who know her, as well as many who don’t but have heard her story.

  Harriet’s blood counts have been very low since this last round of chemo finished, resulting in high fevers and infections and so they have started to give her a new drug which stimulates white cell division so that she can help fight the bacteria in her body, as well as the barrage of antibiotics and antifungal treatments. With 2 peripheral IV’s in her arms, she has to have daily visits from the “blood drawers” to test her counts as they can’t do that through the IV’s and the IVs have to be changed every 5 days, so there is lots of “poking” which is not nice. Harriet has not had her usual good appetite while she has been having high fevers, but that should return when the fevers subside and the counts start to rise again.

  Please continue to hold Harriet in your thoughts and prayers. She is too weak to “hold court” just now, either on the phone or in her room, so notes in the mail or on her e-mail or website are great.

  Fondly,

  Mary

  When Fox was a puppy, I once left treats in his bowl for him to find upon coming back inside after peeing in the yard. Now, every time he comes into the house from the back door, he runs to his bowl to see if treats are there again.

  This is how I think memory works. We might not remember the specific time something happened. But we remember remembering it the next day, and the day after that we remember the consequence of the memory. Memory becomes habit; it lives in our actions, in our bodies.

  It took years until I wasn’t afraid when I got a cold, or had a blood test. The memory of fear still lives in my body.

  When I passed the ten-year remission mark, at which point that Australian doctor said I had the same chance of getting cancer as anyone else, my dad told me that now my annual check-ups were about doing the medical system a favour. By continuing to show up and let the doctors note in their records that I am alive, I am letting the establishment know that it succeeded. That they did their job.

  But now, home from my trip with Cal, I am eight and a half months pregnant and seeing doctors at least once a week to monitor my obstetrical health and the baby’s development. I’m not only busy—my focus is shifting. This time, I decide to call and cancel my check-up.

  The illness was still raging after twenty days of fever and I was getting worse.

  From the progress reports:

  Oct 22

  Harriet continues to be greatly febrile.

  Appetite down

  x respiratory distress

  x abdo pain

  CT scan done tonight shows a significant worsening of both L+R upper lobes of lungs. In addition there is a lesion + lymphadenopathy, all new since scan from Oct 19 Significant worsening of pulmonary picture in face of continued poor clinical picture.

  Oct 23

  Clinical deterioration overnight.

  Infectious Disease team to examine: pt is clinically worse.

  Nurse note: Parents v. anxious. Many services in to see pt.

  Oct 24

  Nurse note: Harriet nervous + scared.

  The doctors obtained permission from a drug company to administer a new drug prototype believed to work on Aspergillus, and they needed to move quickly.

  My world was getting even narrower in focus.

  My mum wrote in the journal:

  Wed 30 Oct, 3:30pm, H walked to window

  Thursday Oct 31, 1:40–2:30, Trick or Treating around 8A with HL in wheelchair.

  There’s a photo of my mum and me standing in the hallway outside my room. Pink pinwheel wallpaper, my name written underneath the window, my chart in a slot next to the door. My radiant mother is laughing at something off-camera, and I can tell it’s a real laugh since she has a standard smile for photographs. She’s wearing jewellery and the red lipstick she always wore; I never once saw her not looking put-together. I’m looking at the same thing she’s laughing at, but have an expression that’s—I don’t know,
actually. I look blank, somehow removed, observing with detachment. My mouth is pursed; perhaps I was saying something. I’m wearing a rainbow clown wig with a white bandana underneath, because the cheap webbing of the wig was itchy. There’s a triangle of my scalp visible: you can see a fuzzy darkening above my ears, and I still have most of my eyebrows. A little red circle has been painted on the tip of my nose, a stark contrast to my face, which is so pale it’s reflective. I’m leaning on my IV pole with one hand; the other holds my four IV tubes and has an oxygen sensor attached at the index finger. There are two plastic hospital bracelets on my wrist: one white, the standard identification tag; and one red, an allergy tag to warn medical staff, in case I’m asleep or unconscious, of my allergies to certain medications. The knuckles on my hands are so defined, the strength and fragility of bone so exposed.

  The bright flash means everything behind us is in darkness. Posy the clown is right behind me, her purple wig and purple tutu just visible between me and my shadow.

  The drugs I was on: ciprofloxacin, meropenem, vancomycin, liposomal amphotericin B, caspofungin, voriconazole, fluconazole, ceftazidime, tobramycin, metronidazole, and GCSF. The bags of TPN also hung from my IV, and needed their own permanent tubing lines. The nurses encouraged me to get up as much as possible, to try to move around. If I continued to stay in bed all the time, I was at risk of sepsis.

  Then, suddenly, the fever broke. One of my doctors used five exclamation marks when he wrote this in the progress report.

  Stable weekend. Afebrile x 24 hours!!!! Improved clinical situation!

  The fever surged back briefly, then stayed at bay. I was recovering. They still did not know for sure what was causing the infection, but something was working.