Natural Killer Page 7

  There was a three-year-old boy on the ward at the same time as me whose mother was Haitian and whose father was Egyptian. The doctors were looking for a bone marrow match for him but couldn’t find one. The little boy died of meningitis he’d contracted from his own body.

  The nurse wanted to show me what the BMT ward was like so I could prepare myself for when the time came. Even before going, I knew it was going to be different. Hard.

  Each room in the unit is airlocked, with two sealing doors. The patient remains in the room, within both doors, at all times. Only three registered guests are ever allowed to go inside the room—parents, a sibling, a friend. Three in total.

  The way that the BMT was presented to me made it seem like my only hope at salvation.

  Because of the somewhat special and less common nature of Harriet’s case…

  So even though seeing the rooms stunned me, I had been able to convince my brain to not be afraid of the process but to look forward to it. If it was my chance at being cured, then it didn’t make sense to be afraid.

  I tried to remember this even as I learned that I would not be able to eat food that wasn’t boiled or canned for up to a year after the BMT. That I would have to take steroids to prevent the very likely event that my body rejected the transplant. That my eggs and ovaries, if they happened to still be fertile after all the chemotherapy, would certainly have any life finally burned out of them by the preparation for the transplant, unless an ovary was removed ahead of time and frozen in the hopes that, as my dad had noted, technology might exist later. That I would inherit the allergies and DNA of my donor: meaning, if I received stem cells from a man, my blood would register as male. (The different DNA part was actually cool, I thought. My first thought was that I’d be able to commit crimes and not get caught.)

  The nurse, my dad, and I stood looking around this airlocked room. In between the two sets of doors was a sterilization station, where nurses, doctors, and the registered guests would have to completely wash and sterilize their hands, arms, and faces, and then gear up in full-body suits. Gloves, booties that went over the shoes, a mask to cover the mouth and nose, and a cap to cover the head. For months, I would see only eyes.

  “Well,” my dad said, not looking at either the nurse or me. “This is good to see, isn’t it?”

  It was like being in the middle of a hailstorm in the summer and saying, “Lovely weather we’re having for the time of year!”

  People ask if I can feel the baby yet. It’ll feel like flutters, they say.

  How am I supposed to know what to feel? I want to ask them. My body is constantly giving me feelings I don’t understand.

  But when I do start feeling the baby move, and the wriggles are significant enough for Cal to be able to sense with his palms to my belly, I finally feel as though this isn’t all in my head. The little surprised half-smile of delight I see from Cal when he can feel a tiny flutter from deep within my body brings me, even weeks later, such joy.

  The first stranger to comment on my baby-belly is a fishmonger in Chéticamp, in the Cape Breton highlands, who sells us freshly caught trout that we carry from his van to ours.

  “Really?” I want to hug him. “You see this too?”

  That night, as we fry up the fish for dinner, I ask Cal, “What are you most afraid of?”

  “In life?” he asks.

  “No,” I say, “About the baby.” I had thought this was implicit.

  Though it is early June, our more northern, coastal position means that the temperature drops below zero as soon as the sun falls. As I cook, the sun low in the sky, Cal starts to build a fire to prepare against the coming cold. The dogs are lying on the ground outside, wanting to be equally close to both of us.

  “Oh. I don’t really have any fears.”

  “What? None?”

  “Well,” he says, lighting the fire, “we haven’t been given any reason to worry about anything, and there’s no point worrying for nothing. That’s too abstract.”

  I want to laugh. Abstraction has never stopped me.

  But at the same time, we both agree now that neither of us pictured the baby—what it looked like, what it would be like to hold—before it was born. Superstitious or not, we agreed that it did feel too abstract.

  I slice tomatoes and fresh bread, toss them into the pan to warm through, and we eat in the last of the daylight. In the brief moments after the sun is gone behind the green hills but before the light has completely disappeared, the delicate white flowers all around us glow like tiny stars.

  Between the second and third round of chemo, I was able to go home. Leaving the hospital, I saw the world as if I’d just put on glasses. Everything sharper, magnified. I saw leaves, not trees. Feathers, not birds. My face was pressed against the back window as we drove up the smooth bends of the Don Valley Parkway. I was going home for the first time in six weeks, the longest I’d ever been away.

  You’re never able to smell what your own home smells of, but walking in the front door after having been in a sterile place for so long, I could get close: pancakes, lemon, fresh air, and potpourri.

  I walked around slowly—there were so many more stairs than I was used to—and took it all in. My own bathroom! My own bedroom! Not having Ivy following me around, not having someone sleeping on a vinyl couch at my side, no beeping in the night, no announcements all day, curtains!

  July 4: It‘s amazing the things I always used to take for granted and not even realize…like being able to flush my toilet!! (at the hospital the nurses had to test and measure all my pee…ugh) We have a nurse that comes to the house every day to flush my IV line (which is only about 5 inches long now, with no Ivy at the end!) and put in Heparin so that it doesn’t clot up, but my dad has quickly learned how to do it himself (with the nurse’s approval) so now she doesn’t have to come! I get to stay at home until the 15th (when I have another bone marrow aspirate and lumbar puncture to see how things are going) or until I get sick which the nurses say is what usually comes first So I’ve been bringing little anti-bacterial hand wipes everywhere and using them all the time and staying as far away from everybody as I can.

  I did get to go to the mall yesterday which was great, especially since it wasn’t very crowded.

  I don’t know much about the third round of chemo, but hopefully it will run as smoothly as the second one. I think that it’s shorter, but stronger and more condensed but I don’t know.

  The self-imposed no-touching rule continued: the last thing I wanted to do was land myself back in the hospital any earlier than absolutely necessary. When I went to the mall with friends I Purelled my hands every five minutes. We had family over for dinner, and I didn’t touch any of them, or any of the things they brought. These were my own rules—no doctors or nurses had advised this—but I felt so afraid, and so vulnerable, that it was one thing I could do to feel a little bit more in control.

  My forum update concluded:

  It’s such a beautiful day outside today, so I hope I can enjoy it while it lasts…I’m trying to fill myself with beautiful happy things and thoughts to last me through my next hospital stay.

  Interlink Community Cancer Nurses: Progress Notes

  Re. Harriet Lye

  Conducted home visit on July 4th, 2002. Both parents and Harriet participated. No complaints of nausea, appetite reasonable. Was having trouble sleeping since discharge from 8A. Parents seem to have a good grasp of diagnosis and treatment, and the seriousness of Harriet’s particular illness. Mom stated that what is most important to them is information on how to help Harriet through this and to keep her well. Mrs. Lye asked about psychologic supports for Harriet. Mom requested a psych referral which I have made.

  After Harriet left the room mom shared with me concerns around future fertility, and stated that she felt this would be an important issue for Harriet. At that point this had not been raised
with Harriet.

  I contacted Harriet’s school in June and explained diagnosis. She was made exempt from her exams because of excellent academic standing. I will contact school again in September to arrange for home tutoring. Harriet does not feel a class visit is needed.

  This is a high functioning family under tremendous stress. Will continue to follow.

  K. D.

  RN MScN

  One of the first things I did when out of the hospital was go to a wig shop. Money had been raised for me—wigs are very expensive—and I went with my parents to a place on the fancy part of Avenue Road to try some on. At this point I still had my hair; to an outsider, I probably still looked normal.

  The people at the wig shop gave me a choice. Did I want to shave my head before my hair all fell out? Some people found the process of losing it too painful to endure, and preferred to do away with it all at once. They could do it for me right there, they said—it would only take a few minutes.

  “Definitely not,” I said. “What if it doesn’t even end up falling out? What if it stays for a long time?”

  I could tell from their expressions that everyone thought I was being foolish, but looking back at it now, my response feels like a metaphor for my optimism.

  Was I optimistic, though? In looking through my medical records I found a note from one of my nurses in the daily progress reports from June 3:

  Emotional support provided to family. Mum very tearful when discussing hair loss for Harriet. Mum states Harriet doesn’t want to have hair cut + very anxious to have hair loss. Childlife specialist visited patient to try to discuss options—difficult to have pt open up.

  Of course I was anxious, but does anxiety preclude optimism? Where I remember feeling optimistic, was I in fact simply trying to delay the inevitable?

  July 16: I’ve been at home for exactly two weeks now! When I go back to hospital for clinic visits to check my blood all the doctors and nurses are so surprised that I’ve lasted so long without getting an infection, especially since I’ve been nutripenic (sp?) for part of the time. They are also surprised that I have so much hair left…when I asked in the beginning when I would lose my hair, they said it would be all gone by the end of the first round. Well, HA! It’s not! And I’m going into the third round on Thursday.

  The third round is only 5 days, but I’ll be having chemo 24 hours a day . I was supposed to start the third round yesterday, but my blood cell counts weren’t high enough. I hope they will be ready for Thursday!

  I’m picking up my 2 wigs on Wednesday. They’re GORGEOUS!! My mum is bringing the camera so we can take pictures and post them on the site, so everybody can see them.

  I’ve seen what optimism can do for you, it works miracles—I think it’s probably what worked for me, because I still have lots of hair, eyelashes, eyebrows, all that stuff that I was told would be all gone by about a month ago!! I mean, they are going, but only when I’m on chemo and even then, it’s not in huge massive clumps.

  My dad got the photos of me trying on wigs developed quickly so we could upload them to the website as promised. They create a scenario entirely different from the reality. Recently, on the fifteenth anniversary of my diagnosis, I posted those photos to Facebook with the caption “15 years old, 15 years ago.” Half of my life lived without cancer, half of my life lived with having had it. I’d been thinking about it a lot.

  The pictures got over two hundred likes, but most of my friends and family didn’t make the connection to the anniversary, or even to my illness. I’d posted two photos: the one on the left was me trying on a wig with long hair that looked almost exactly as my hair did then, and the photo on the right was with a short-hair wig. Laid out side by side and without any context, it looked like a before-and-after diptych of a haircut.

  Against all odds, at the time the photos were taken, I still looked normal. I was able to notice that my hair was a bit thinner, but nobody else could. I had even put on a little bit of weight and didn’t look as gaunt as I had during the first round of chemo. I’m wearing a tank top and a puka-shell necklace and my skin is luminous, my eyeliner perfect; the gauze package of my IV tubing is only slightly visible in one of the photos. If you weren’t looking for it, you wouldn’t notice it.

  In both photos, I’m looking in the mirror, unaware of the photographer. I think I look a little nervous, or at least hesitant. The kind of look you get when making very important decisions. This teenage girl is looking at herself, looking so healthy, and you’d think she’s preening, wondering if she really likes her outfit after all. But I’m really thinking: Is this me? This is really what’s happening? Does this look like who I am? Who I will become? There was only one point when I allowed myself to question if I would get the chance to become. That moment hadn’t come yet.

  That period at home—another interlude—felt so normal it verged on the surreal. The forgetting, and then remembering, happened all the time. My mum made me raspberry pancakes and I don’t remember it ever raining. When I went in for my bi-weekly appointments at the clinic, on the opposite corner of the eighth floor to the ward, the nurses said they’d never seen anyone stay home without a fever for so long. I was so proud to have defied expectations.

  Young Heracles invited me and my family up to his cottage for a day. He drove me around in the boat, anchoring it in a sunny spot in the bay. I don’t remember saying anything, I just remember the feeling of my whole body smiling. A warmth all over. How special it was to be ordinary. He was wearing a grey tank top and silver chain necklace, his bleached spikes freshly gelled up. He was tall and strong and had perfect teeth and a cheeky, chubby smile. There are so many pictures of that day, of Heracles and I sitting together on his dock, the sun behind us, our outlines blurred. One where his mom is braiding his sister’s hair, and his aunt is holding up the arms of his two-year-old cousin to help her walk to get a pool noodle. One of me pretending to drive the boat. A series of my parents and me smiling at the camera, one where my mum was caught glancing at something near my feet—the dog, maybe.

  The most uncanny picture is of Heracles and me sitting side by side on Muskoka chairs, his beautiful golden retriever at our feet and the baby cousin balanced on the arms of the chairs between us. Heracles positioned the chairs carefully so that we’d be facing the light. All four of us, even the dog, are smile-squinting at the camera. I’m laughing, my mouth open as if in speech. He has one arm on the dog’s back and the other around the little girl, and I’m holding onto her tiny hand. It’s the time just before the golden hour, sharp shadows and warm pools of light. We don’t look fifteen. We look like young parents.

  Zoom in, though, and you’ll see the only evidence of the disjointed reality of that exquisitely beautiful day: the gauzed pouch of my IV tubing down the middle of my abdomen, visible as a bumpy shadow underneath my turquoise t-shirt.

  Returning to the hospital for round three, my counts still weren’t high enough to start chemo. I had to wait. There was nothing to do but “rest.” I could be transfused, but only so much—and you can’t transfuse white blood cells. My bone marrow aspirate was scheduled for Monday July 22 but kept getting postponed due to the low blood counts. I was impatient. I was concerned. I was like a born-again believer in the health-care system and this protocol, and if it wasn’t going according to schedule, what would happen? Could the cancer catch up again?

  On the day the operation was finally scheduled, I wasn’t allowed to eat until it was completed, as I had to be anaesthetized. They call this NPO, which my dad told me stands for the Latin nil per os—nothing by mouth. Since my aspirate wasn’t life or death, the procedure kept getting shifted down as higher-priority cases arose. All the while, I was still unable to eat.

  In the notebook, I wrote about myself in the third person to keep continuity:

  It’s 3pm and Harriet is dying of hunger and can’t STAND waiting anymore. She’s scheduled into room 12, t
he group room, WHICH ABSOLUTELY SUCKS.

  Dying of hunger, not of cancer. These were the kinds of things I was able to complain about. Anything more than that would get existential.

  My mum set up a telephone prayer chain at the church my family went to, where—if I understand correctly—at any given moment, someone was calling someone else so they could pray for me together over the phone, threading a message that would always be alive, no matter what time it was. Later, my mum told me she would go to a private room in the hospital at around two p.m. each day she was there, a time at which, as she’d shared with the prayer chain, she felt she needed particular support. It gave her peace to sit there, thinking of being thought of.

  Is prayer the same thing as meditation? Prayer is thought and meditation is about not thinking: is that the difference? I didn’t know if I believed in prayer, but I was grateful for all of these people thinking about me.

  There was a chaplain in the hospital who was the cousin of some family friends. He looked like a tall, lonesome cowboy from some past time, the 1970s or the 1870s. He had long brown hair that he wore in a loose ponytail that hung straight down his spine and he had a long, equine face. I liked when the chaplain came to visit. I don’t remember what we talked about, but we never talked about God. He was used to talking to kids who were as sick as I was as though we were normal people, and not very many people are good at that.

  I was given a jade bracelet that had been blessed by a monk in Tibet in my honour. The daughter of a cousin of a family friend had travelled there, or something. (Ten years later, I mailed the bracelet across the world again to another girl who was dying—and then died—of cancer.)