Love and Laughter in the Time of Chemotherapy Read online

  Library and Archives Canada Cataloguing in Publication

  Pawagi, Manjusha, 1967-, author

  Love and laughter in the time of chemotherapy /

  by Manjusha Pawagi.

  Issued in print and electronic formats.

  ISBN 978-1-77260-045-2 (softcover).—

  ISBN 978-1-77260-046-9 (EPUB)

  1. Pawagi, Manjusha, 1967-. 2. Pawagi, Manjusha, 1967-

  —Health. 3. Cancer—Patients—Biography. 4. Authors,

  Canadian—Biography. 5. Judges—Canada—Biography. I. Title.

  PS8581.A8463Z46 2017 C813'.54 C2017-902904-5

  C2017-902905-3

  Copyright © 2017 by Manjusha Pawagi

  Cover photo © iStockphoto

  Editors: Carolyn Jackson, Wendy Thomas

  Design: Melissa Kaita

  Author photo by Jack Farley

  Printed and bound in Canada

  Second Story Press gratefully acknowledges the support of the

  Ontario Arts Council and the Canada Council for the Arts for our

  publishing program. We acknowledge the financial support of the

  Government of Canada through the Canada Book Fund.

  Published by

  Second Story Press

  20 Maud Street, Suite 401

  Toronto, ON M5V 2M5

  Second Story Press

  For Jay

  Now, I have no choice but to see with your eyes, he said, so I’m not alone, so you’re not alone.

  —Yiannis Ritsos, from the poem, “Maybe, Someday”

  I’ve suffered for my art, now it’s your turn.

  —Stephen Fry, from the novel The Hippopotamus

  Chapter One

  I used to lie awake at night, planning my husband’s funeral. He is not dying. He is not even sick. He did have Hodgkin’s lymphoma, but that was when he was an undergraduate student, almost thirty years ago, and he has been in remission ever since. Still, his treatment, as cancer treatments often do, ravaged his body and lungs, and he is prone to getting chest infections. So I worried. If he so much as sneezed, I would picture it as the beginning of the end. I could not stand to think of the loss, so I would concentrate on the actual funeral instead. It made me feel like I had some control. Plus, I like planning things.

  And so I’d lie there, glancing occasionally at my clock radio as 3:45 a.m. gave way to 4:17, and then to 5:03, Simon sound asleep beside me. Friends complain about husbands snoring, but I have the opposite issue. I have never known such a silent sleeper. I would have to hold my own breath to catch even the smallest sound of breathing from him, and then I could finally relax. I would worry that I was dreaming him and I’d gently pinch him to make sure he was real.

  “If you think you’re dreaming,” he once said pointedly, “you’re supposed to pinch yourself, not me.”

  I always start with the music; all Leonard Cohen, because it is so naturally funereal. But not actually sung by Leonard Cohen, because that would be too much. I want to move people, not make them suicidal. I intend to use Toronto torch singer Patricia O’Callaghan, whose covers of Leonard Cohen I have had on constant repeat in my car for six months straight. I’ll start with my favorite, “The Window.” It’s so beautiful that I hit repeat before it finishes because I’m sad at the thought of it ending even before it does (the same way I think about Simon’s imminent demise). I’m not sure the cello introduction is long enough, but ideally it will last until people settle down and realize the service is beginning. And then Patricia will start with the words “Why do you stand by the window…”

  Next will be “Dance Me to the End of Love” during the slide show. It might be tricky, but I would like to time the photos of Simon and our twins, Jack and Anna, to appear with the line “Dance me to the children who are asking to be born.” There’s one photo I would save for the little card you give everyone as a memento; it’s the one of Simon on the deck of my parents’ cottage, tanned and smiling straight at me (since I’m the photographer). He has a baby in each arm; Jack and Anna are about eight months old, their big brown eyes are looking at me solemnly, as only babies can look. Simon’s gray eyes are crinkled up by his smile.

  “My eyes are sky blue,” he corrects me.

  I will end with “Hallelujah.” I know, I know, you’re thinking that is so overdone and obvious, but I’ve got a surprise in mind. All the boys and girls in the Canadian Children’s Opera Company that Anna sings with will be sitting in the balcony in their black and white uniforms. At the chorus, where the word “Hallelujah” is repeated a gazillion times, they will rise to their feet as one and join in with their perfect child voices. The audience will be stunned and amazed and will barely have time to recover before ushers quietly and efficiently distribute handfuls of rose petals, real ones, not fake, for everyone to scatter on the casket (closed).

  You’re probably wondering, how is she so good at this? (And you may be wondering other things as well.) So I have to reveal that Simon’s is not the first death I have anticipated. When I was a child, if my parents returned home even five minutes later than they said they would, I would assume they had been killed by a drunk driver, and that my little brother and I were now orphans. Harish would be there in his pajamas, clutching the board game Aggravation to his chest, begging me to play with him. And I, excellent elder sister/babysitter that I am, would be stationed at the living room window, watching for my parents to turn into our suburban cul-de-sac, and simultaneously running through a mental list of our family friends, looking for potential alternative homes.

  Even into my early twenties it continued. I once dated a man who was forty when I was twenty-four. I spent every minute of our time together doing the math. When I’m forty, he’ll be fifty-six, so far not too bad. But then when I’m fifty, he’ll be sixty-six. And when I’m sixty-five…oh my god, he’ll be dead. It didn’t matter that it was the kind of relationship you measure in days, not decades; case in point, I once called him only to hang up the second he answered because I only wanted to ascertain that, yes, he had the use of both his phone and his hands and was choosing not to call me. I still could not stop fretting about his impending death.

  I met Simon on a camping safari in southern Africa in the fall of 1999, going through Zimbabwe, Botswana, and Namibia. He was the only one there from England, I was the only one from Canada. There were others from Germany, the Netherlands, Australia. Two women from the United States, Vicky and Lori, ended up coming to our wedding.

  If I try to tell you what we had in common, I’m going to sound stupid: We bought matching wooden giraffes; we had the same favorite Springsteen song, “Thunder Road”; and the same favorite Dickens novel, Great Expectations. And since I share my February 7 birthday with Charles Dickens, that last point seemed eerily significant. If I tell you how we were different, you would be alarmed: He barely talks, I barely stop talking; he never worries, I never stop worrying. When I heard him use his inhaler, even way back then, it sounded to me like a death rattle. Yet my doubts were no match for his certainty.

  He claims he knew the first time we met, walking in the Kalahari Desert to look at the sunset, but wisely said nothing until months later, when I went to visit him in England and we decided on a trip to Italy. It started with a sudden kiss as our plane touched down in Rome. A few days later, we were in a café in Sorrento, giddy with romance, going back and forth with that delighted conversation that goes, “I have a question for you, when did you first…” etc., when he asked, “I have a question for you, do you have any idea how much I
love you?”

  I was too flustered to say anything, so I just laughed. But I should have said no, Simon, actually I have no idea. Usually you never find out really, because usually you’re never tested; you skate on the surface of an ordinary life, not realizing how lucky you are that the ice is holding you up.

  By this point I’m trying to decide who the pallbearers should be. If there are usually six pallbearers and three spots are taken with my one brother and Simon’s two brothers, that only leaves three more. If I choose a representative from groups of friends, say, friends from university, neighbors, and colleagues, would Casey be offended if I picked Paul? I don’t want there to be any hard feelings. By now I am getting a bit stressed.

  It doesn’t help that when my writers’ group reviews this chapter, Peter says, “What about me?” He is only partly joking. I’m completely dismayed. I can’t believe I forgot about Peter. My buddy from book club, my date for plays at the Young People’s Theatre from before I met Simon. I was the one who officiated at his Toronto Island wedding to Richard just a short while ago, for heaven’s sake. I’m distraught about my oversight. I tell my friend Laura about it. “But what about Sigis?” is her only response, referring to her husband. I can’t believe this.

  When I tell Simon, he shrugs.

  “Pallbearers should be the same height” is his only comment. I didn’t know that, but it makes sense.

  “Like how hard it was when we were portaging,” I say. Simon is more than a foot taller than I am, so it was really challenging to balance the canoe between us. He nods and adds, “Or at least they should be in pairs of the same height.”

  I decide to worry about the height of the pallbearers later.

  I’m more concerned with the question of how much lead time, exactly, I would need to book Patricia O’Callaghan. Simon and I once saw her perform at The Senator, a downtown jazz club. There were only a dozen or so people there. I was eating three feet from where she was singing and she literally brushed by me during the intermission. I stopped her to say how much I loved her music and she seemed genuinely appreciative. So how expensive and unavailable could she really be? But there’s also the matter of booking the Canadian Children’s Opera Company. I’ve got a cast of thousands now and what if they’re not available?

  It seems pretty heartless to call while Simon is still alive, but if I wait until after it might be too late. This is Toronto after all. If you want to go on a camping trip to any of the nearby provincial parks, you have to be on the Internet at exactly 7 a.m., five months before your planned weekend, to book a site. If you want to have friends over for dinner, you have to give them at least a month’s notice and several alternative dates. And I want to get as much done as possible while I still have the energy and spirits to do so. It’s at this point that I suddenly see myself from the outside, rather than the inside, where I usually live. I refrain from actually contacting anyone. After all, I don’t want people to think I have a problem.

  My friend Lisa says this is called “catastrophic thinking.” You think that if you’re prepared for a catastrophe, it will not happen. I think of it in terms of circumvention. Because the gods don’t like it when your expectations are met, you trick them, by expecting something bad. This is as close as I come to having a religious belief system. My gods are plural, because I was born in India; and my hopes of them are modest, because I grew up in Canada.

  Then, on April 28, 2014, while I was at Sunnybrook Hospital’s emergency department for something minor, I was told I had leukemia. It was advanced, it was aggressive, and, if I did not start treatment immediately, it would kill me. Turns out the person I should have been worrying about was myself; the funeral I should have been planning was my own. Not that it’s a total waste. I would be happy to use Simon’s funeral arrangements for myself. It’s just that I won’t be there to enjoy them.

  Chapter Two

  The beginning was a pain in the butt—literally. Hemorrhoids, of all things. To tell the truth, I did not even know what hemorrhoids were until I got them. I was just vaguely aware that they were something embarrassing that people laughed about. But I certainly was not laughing. I refer to my condition obliquely at work, as a “stomach ailment” or “lower back pain” (“Very low,” Simon would add) that I am trying to get to “the bottom of.” And I try to hide the related accoutrements: the doughnut-shaped pillow, the Epsom salts, the sitz bath, the ointments. My family doctor refers me to a clinic downtown for a surgical procedure that causes me more agonizing pain than I’ve ever felt before, and that doesn’t even help in the end. I won’t name the clinic or the doctor here because I don’t want to get sued.

  When the mad scientist doctor with the flyaway hair finishes torturing me, I sit gingerly across from him in his office, with my lips pressed tightly together, tears still streaking my face, while he writes me out a Percocet prescription for the pain. At first, I’m all like “I can’t take Percocet!” I know how addictive it is. I even organized a panel at a law conference about Percocet. But when I experience the floating ease, the miraculous relief Percs bring, I go from being leery of them to scoping out my own independent sources. When my prescription runs out on a Sunday, the day before my follow-up appointment, I call every doctor friend I have to beg for a renewal.

  My friend Homer, a trauma surgeon at Sunnybrook Hospital, who was not at home during my first desperate wave of messages, calls me back the next day, alarmed.

  “I didn’t get your message until today. I don’t use that voice mail. Vivian heard it and said you sounded strange.”

  “It’s okay,” I reassure him dreamily, “I got the prescription, didn’t mean to scare you. Don’t worry.”

  “Look,” he says, obviously worried, “there could be an internal infection. Let me check with a specialist I know, a prof at U. of T. I’ll call you right back.”

  He calls again minutes later. “Yeah, he says you should really get a CT scan to check it out. Can you come to Sunnybrook emerg?”

  “Right now?” I ask.

  “Yeah, I can meet you there in half an hour.”

  I pause before I answer. I was feeling good by then, lying in bed, eating Cheetos, and rereading Jane Austen’s Persuasion for approximately the millionth time. I had just reached the best part where Captain Wentworth pours out his soul to Anne in a letter:

  Dare not say that man forgets sooner than woman, that his love has an earlier death. I have loved none but you. Unjust I may have been, weak and resentful I have been, but never inconstant.

  However, Homer’s tone, and especially his offer to meet me there, makes it sound a little urgent, so I sigh, “Fine,” as if I’m the one doing him the favor.

  I get up reluctantly and hide my snacks in my night table drawer so my eleven-year-old twins will not find them. I would give my life for the twins, but not my Cheetos. I call a cab because Sunnybrook is close to our house and parking there would cost more than the cab fare. The children are both out: Anna at a rehearsal with her opera chorus, and Jack at a guitar lesson. The kitchen is noisy with sizzling beef and our ancient clattering exhaust fan. Simon is in the middle of making lasagna for dinner, little suspecting that we are about to eat more lasagna in the next six months than we have eaten in our entire lives to date (on Family Feud it would register number one in “Top ten dishes people bring you in a crisis”).

  The emergency department has a ridiculous setup. Instead of asking you to take a number, a sign simply directs you to sit in the front row of chairs that face the nurses’ triage rooms. People have to work out the order for themselves. After sitting there for a few hours, I see that the person at the beginning of the row goes up when the nurse calls out, “Who’s next?” Then everyone shuffles over one seat.

  Seeing as we’re all there for something awful, the idea of eventually sitting in every single germy seat, one after the other, is disturbing. I mean, some people are moaning with pain, some are vomi
ting into basins, some are oddly swollen. Still, we just shuffle along, seat to seat. Because we’re Canadian, when there are seats to spare, people do not sit directly beside someone, but leave exactly equidistant gaps (as we do on the subway), which means that as more people arrive and fill in the gaps, we are now out of order and have to remember who arrived first.

  When the row fills up, people have to sit elsewhere in the waiting room and keep track a whole other way until they can claim a seat in the front row. Every single, solitary time someone new arrives, someone in the front row would explain the entire mysterious procedure all over again. Why can’t they have one of those things that you use at the deli counter of a grocery store, you know what I mean? Where you rip off a little number?

  I’m still wondering what the name of that thing is (I look it up later—turns out it’s called a Take-a-Number dispenser, which I probably should have guessed), when I get my consultation with the triage nurse, routine blood work, and CT scan. While I’m lying on a bed in a little chamber off the emergency room to await the results, a young man in green scrubs, who is either a resident, medical intern, or high school student (he looks that young), rushes in and demands, “Have you lost a lot of blood recently?” I don’t have the slightest idea what he means. I actually look down at my arms and legs in case I have injuries I have been unaware of and am gushing blood. I do not see anything untoward, so I answer tentatively, “I don’t think so, no.”

  “Because you have almost no hemoglobin,” he tells me. “You need a transfusion right away.” I’m very confused. I’m notoriously unobservant (walking right by our house on my way home from work; not noticing Simon has set up an eight-foot-high Christmas tree in our living room until the children mention it at dinner), but surely even I could not have failed to notice losing copious amounts of blood? A nurse sets me up with an IV line for a blood transfusion minutes later, along with an infusion of pain medication, so I’m feeling drowsy and strangely relaxed, enjoying the fact I am tucked cozily under a heated flannel blanket, when Homer comes in and pulls up the wheeled stool by my bed.