When I met my first friend in Halifax, I told her abruptly as we walked up the stairs to my dorm room. She had dreadlocks, was a year older than me, and was married to a man she’d met at Christian boarding school. I told her as we walked, her a few steps behind me, so we weren’t facing each other. I just wanted her to know, and then we could move on.
Going away to university I felt so adult, and that my experience with illness was long behind me. And yet: in my student ID photo from first year, my hair is still short, growing out at different lengths. It would be another several years before I would be considered out of the risk of relapse.
As we read ancient philosophical and religious texts, my friend and I learned to doubt together. We learned to ask questions to which we’d never thought we were missing the answers.
Now, thirteen years later, she no longer has dreadlocks, is married to a new man, and we are pregnant at the same time. She’s already had two children, one of whom died at birth. This tragedy marked, for her, a new phase in doubting. We are now both afraid of our bodies’ potential to betray.
I’m not sure who told the first person, or the pattern of how the message spread, but, thankfully, at the time of my diagnosis, I never had to tell anyone. Suddenly, everyone just knew.
All of my close friends each have their own story of hearing of my diagnosis. They remember it as a bad event that happened to them.
My friend from next door’s story is that her mom picked her up from school and had A Walk to Remember sitting on the passenger seat as a present. The movie had just come out on VHS and would be something bonding for them to do together that evening after discussing my diagnosis. Her mother told her on the drive home, they both cried, she asked questions for which there weren’t yet answers, and then they sat together on the couch to watch Mandy Moore. The back of the box only revealed that “a heart-breaking secret” would put the couple’s relationship to the test and they’d realize “the true meaning of love and fate.” Her mom had no idea that the movie was about leukemia when she chose it.
Jamie, played by Mandy Moore, is a young, beautiful woman who withers at the apex of her youth and beauty. Jamie finally confesses to her boyfriend Landon that she’s not applying to college for the fall, or hoping to join the Peace Corps. Confused, he asks what she’s going to do.
“I’m sick,” she says, turning to face him.
Landon, practical in his ignorance, isn’t worried: he says he’ll just take her home, then.
Jamie, suddenly incredibly frustrated that he doesn’t understand that when she said sick she meant dying, cries, “No! Landon! I’m sick.” Her eyes fill with tears. “I have leukemia.”
Landon, understandably, is surprised. “No,” he says, laughing, unable to reconcile the image of his beautiful, long-haired girlfriend, with whom he’s just been striding arm in arm down the sidewalk, with the image we all have in our heads of a person with leukemia. Landon can’t believe it. “You’re eighteen,” he says. “You’re perfect.”
What if sickness and perfection have nothing to do with one another?
Years later, my friend laughed telling me this. “Can you believe that? Of all the movies she picked, it was one about a teenager getting leukemia. It’s like, too good to be true.”
June 24, 2:30 p.m.
Hello everyone. Good news. Dr. A reported that the first round of chemo was very successful, the leukemia HAS BEEN DRIVEN INTO REMISSION. Remission is defined as <5%, and Harriet has much less than 5%, driven down from more than 90%. Round 2 should start as soon as possible. Dr. A also signed wig form.
June 25, 6:05 a.m.
The second round of Chemo started last night as expected, so 24 June was “Day 1” of round 2. It’s 5 days of Chemo then recovery with a target of a new bone marrow aspirate & lumbar puncture on Day 21. It is much more comfortable for Harriet now that the Central IV Line is installed in her chest, rather than an IV line in the arm, which she had for the first few days of the first round. There are IV Chemo meds & tablet Chemo meds. The second dose in the IV was at about 4am this morning (I did not wake up properly, Harriet did not call for me, and even Harriet essentially slept through it)
We’re all trying to learn and do things better than the first round, so Harriet is getting up & about more, keeping mobile & spending time standing or sitting (too much lying down is not good for the lungs etc), and we have to try harder this time to protect her from catching any “bugs,” especially when her white counts are low.
That’s all for now. Things are going well.
David
I’ve been told—of the novel version of this book, as well as this non-fiction version—that I should describe the narrator before she got sick. That people should get a sense of who I was before all this. But the thing is, I was the same person before I got sick. I don’t believe in the transformative power of illness, either for good or for bad.
My parents are now of grandparent age. When we tell them we’re expecting a baby, my mum uses the word “miracle.” A word I find a little embarrassing, too ostentatious. I don’t believe this event to be divine, even if it is, in accordance with the definition of that word, unexpected according to the laws of nature and science.
(“Well,” my gynecologist said, “clearly the chemo didn’t affect your fertility, then!”)
My parents live in a bungalow overlooking a pond near Georgian Bay, and my mum, looking out at the frozen water, says she can’t wait to see the baby one day paddling in the shallows. She’ll have to get a little toy fishing rod, she says.
But the baby is just the size of a Barbie doll, I think, still living inside of me. An unborn Barbie doll couldn’t possibly go fishing.
This feeling is apparently common among expecting mothers, the feeling that the baby doesn’t exist beyond its current state, whether that’s when it’s the size of a pea, or a lemon, or a cantaloupe, or when it’s a three-month old baby. Some call it being superstitious, but I think it’s being reasonable. Studies show that fathers, and everyone else, don’t have this problem of imagining the future. I wonder what this comes down to.
Our mothers are our first home, and they are the first thing we leave behind when we enter the world. I think my mum found it harder to stand back and see my illness as being about me, and not as an experience that was happening to her, to her daughter. But, as my family doctor said about my pregnancy, it was about us both. I was the one with cancer, but she was the one whose child was sick.
From a very young age, I had the sense that I made my mother afraid, that she felt she had created something that was beyond her, something that she couldn’t control or comprehend. Fear can be a form of love, I think, and this love-fear I perceived intensified when I got cancer. Her love was so big and her fear was infinite. My genes—my cells, my chromosomes—had mutated and grown far beyond her, and she did not have the power to make me well. Had my mother, I wonder, felt responsible for my illness? Had she felt as though the seed of my death had grown within her?
A mother’s love is, to me, a given (I realize this speaks of my good fortune); but a child’s love for their mother is not. This asymmetry is newly painful to me. A child can never—maybe even from an evolutionary perspective, should never—love their parents as much as their parents love them.
While I am pregnant, love and fear are constant, merging, opposing, unifying forces. What if I don’t love my child. What if my child doesn’t love me. What if we both love each other more than we can imagine and then one of us—me, hopefully—dies, and the love becomes uprooted, nowhere to grow. What happens to our love when we die?
Midway through my treatment, one of my doctors came into my room when neither of my parents was there and told me, out of the blue: “In my religion, people get sick with illnesses like yours as punishments for crimes they’ve committed in past lives.”
This is another way of phrasing “everything happens fo
r a reason.” In his case, the reason was very specific, though the specifics were unknown.
Where does that expression come from, out of the blue? Is this where the cancer had come from? That big, infinite blue? Blue means sky, blue means sadness. Both of those are infinite, I suppose.
There’s no logic to childhood cancers the way there is with certain adult cancers. A seventy-year-old who’s been smoking for the last fifty-five years might learn of their lung cancer diagnosis with a certain regret, but the risk was known and they chose to take it.
In this case, being born was the risk.
In the belief system presented to me by this doctor, the risk originated long before that. Who did he think was to blame? Who was my past self, and what had she done to deserve this?
I was baptized as a baby and went to church regularly. Three of my aunts and uncles are priests. I taught Sunday school and went to Christian camp for a couple of summers (my best friend was going and I wanted to do whatever she did). But I’ve never really felt religious. I’ve felt awe and a sense of mystery, and an obligation to be reverent to that awe.
Religious or not, it’s commonplace to talk about God in a hospital. “Everything happens for a reason,” one of the phrases I heard most often, is deeply entrenched in an understanding of a higher power, and the underlying belief that there is a preordained order choreographing our lives and our deaths.
What is the reason for my getting sick?
What is the reason that so many kids die?
That first summer at Christian camp I would have been eleven or twelve, and our camp counsellors were sixteen or so. Every day there was Bible study, hymn singing, prayers, and evening vespers, where the kids in each cabin would sit around discussing particular themes with their counsellors. Our counsellor was named Batman—we were never told their real names. Batman was skinny and freckly with a piggish nose and Miss Piggy curls.
I don’t remember what the subject of conversation was that night, but I was prompted to ask: “What if you don’t believe that God makes the sun rise every morning, or makes each flower bloom, or makes the tides come and go, but that he made the world so that it could do those things on its own?”
There was a moment of silence as Batman thought about this, and then she said: “Well, then you’re going to hell.”
I didn’t listen to anything for the rest of the night. Feeling bullied into belief, I tried to pray to an image of a God I didn’t think existed so as to, as the counsellors said, “let Jesus into my heart.”
Deep into the night, I whispered to my best friend, two bunk beds over, also on top.
“Are you awake?”
“Yes.”
“Can I come over?”
“Please,” she said.
I scurried down my ladder, up hers, and we held each other, our tiny bodies in that tiny twin bed, finding faith not in God but in friendship.
My dad never frowned: he raised his eyebrows instead. As a result, he always looked surprised when he was in thought, rather than stern or heavily pensive. I once asked why he did this, and he said it was so that his face wouldn’t look mean when he got old and wrinkled. He was training it to stay as kind as he was.
He was on duty for Father’s Day. That’s how my parents phrased it: being “on duty,” like a job, like a war. It was after dinner, a twilight sky outside of my sterile room, and I suddenly felt overwhelmed with guilt that, because of me, my parents had to spend so much of their time in a hospital.
I told him I was sorry I was sick, that we had to be in the hospital for this day, that I hadn’t done anything special for him, that he had to spend so much time here in general. He had his back to me. His body started to tremble, like wind shaking the trees before a storm. He shook his head, then turned to look at me. He was crying. Not just teary-eyed, but weeping.
“No, Harriet,” he said, “No. You have nothing to be sorry about.”
That was the only time I’d ever seen him cry.
I’d been lying down in bed for so long that most of the nurses and doctors had never seen me standing up. By fifteen I was already at my full height, which was much taller than the younger kids on the ward, and I still had enough of my own hair to look normal; many of the medical staff didn’t recognize me when they saw me standing, pushing my IV along the hallway. When I told them my name, their faces changed. I looked so much less sick than my diagnosis would have had them expect.
MONDAY JULY 1 (written in my own hand):
12:10pm Going for a walk w my leg weights and dad
Though I wrote only ten words, that unpunctuated sentence opens up a whole memory to inhabit that would likely otherwise be lost. I went to the main elevators in the hallway; there were three on either side, forming the central spine of the hospital’s architecture, each with glass windows that offered a view of the atrium as you slid up and down, smooth as music. Next to each elevator was a flight of stairs. I couldn’t stray far from the tethered length of my IV, and distance wasn’t the point—I just had to use the muscles that were beginning to atrophy. My dad strapped blue Velcro weights to my ankles and I went down three steps until the IV tubes were pulled taut, then back up. I did this three or four times—nine or twelve steps in total—before becoming too tired to continue. We walked back to the room, and I stayed in bed for the rest of the day.
A two-year-old called Megan was admitted to the room opposite mine. When she came to the emergency ward it was because her eyes were swollen with what turned out to be growths burgeoning behind her eyeballs, her dad told me. Cancer had been growing in her body for nearly half of her life: she was diagnosed with AML before her second birthday. We were given many of the same drugs, and because she was too young to vocalize her experience, I sometimes went over to tell her parents, who were both pretty young themselves, about certain side effects I was having. One of the drugs hurt to go in, another made my mouth taste funny. I thought it might be helpful for them to hear what it felt like from someone other than a pharmacist, from someone first-hand.
One day when I was over in her room across the hall from mine, her dad said to me something that he’d clearly prepared: “Megan seems so much happier now than she was before coming to the hospital. She was always grumpy before—I think now she’s more grateful for life.”
I nodded, not knowing what else to do, not thinking of the fact that he was talking about his two-year-old child, a little baby girl who’d been incredibly, inexplicably ill for much of her life.
“I bet it’s the same for you, right, Harriet? You’re probably a lot happier and more grateful for life now that you’re in here, right?”
Again, I just nodded. Megan’s father was twenty-three years old and had had two children by the time he was twenty; but being only fifteen years old myself, he seemed to me like someone with authority whose word I should trust.
I went back to my room, feeling unsettled. What he’d said wasn’t mean, or even really all that negative. It made me uncomfortable, though, with its echoes of “everything happens for a reason.” It mirrored, too, what the doctor had told me about his religious system. What this man had said was connected to a system of cause and effect, of crime and punishment.
I didn’t tell anyone what he’d said to me, but the next day, a nurse I really liked—a young woman who was probably also only twenty-three or so—came to my room nearly in tears.
“Harriet?” She wasn’t my nurse that evening, but I could tell she was there for a reason. She was wearing a bright pink t-shirt and dark blue Modrobes and had a low ponytail and pink cheeks. Her voice was high-pitched and unsure of itself, but she pushed through it: “Megan’s dad told me what he said to you yesterday, and he seemed really proud of himself, like he’d just taught you this important lesson, but I really needed to tell you that he’s wrong. He doesn’t know what he’s talking about, it doesn’t make any sense. You are such a lovely, strong, happy you
ng woman, and I’m sure you were like that even before you were sick. You didn’t get sick for any reason, and you don’t have to be more grateful for anything now. I wish he hadn’t said that to you. I wanted to make sure you’re okay.”
I started to cry. The nurse hugged me.
Difficult experiences are often used as “material” later; this is often even given as consolation during the experience. At least you’ll get some good stories out of this! At fifteen, I wasn’t thinking of being a writer. Did the “material” make me a writer? Is this ascribing a transformative effect to illness, which I said I didn’t believe in?
During the second round of chemo, one of my nurses took my dad and me through a back hallway to visit the bone marrow transplant ward. The transplant the doctors had mentioned in that diagnostic meeting was scheduled to happen after four rounds of chemo, after I had recovered my immune system and once a match had been found.
It’s impossible to determine how long it takes for a match to be found, so nobody would give me a date for when the transplant would take place. I thought it would happen instantaneously, and was disappointed when I found out it was rather indefinitely on hold. The search process takes a long time. There was nothing to do but wait, and I was so sick of waiting.
Both of my parents, and each of their parents, as well as their parents, are from England. This means that, even though I don’t have siblings who would share my DNA, it can be easier to find a higher-level genetic match for the ten blood factors. The goal was a 10/10 match, but anything over a 7/10 was acceptable.
Natural Killer Page 6