Love and Laughter in the Time of Chemotherapy Read online

  “Why is it doing that?” I ask plaintively. “You just changed it yesterday. I thought it was supposed to last a week.” Although I have to empty the bag every couple of hours, I was told in the hospital that the bag itself only had to be changed every six to ten days. He shrugs.

  “May be the medication you are on. Is paste you can get. If I have, I will bring next time. Or you can order, stoma paste, helps with seal.” He goes to the office and wheels the IV stand into the bedroom and starts attaching the bags.

  Yuri is originally from Siberia. I was surprised when he first told me that. I had pictured Siberia as a frozen wasteland (perhaps how many people picture Canada). I knew it only as a place that Russia sent prisoners and political dissidents. I didn’t know that regular people lived there. He was an oral surgeon and his wife was a gynecologist.

  “We make only twenty-four dollars each month,” he told me. “I make more when we first move to Canada and I work at gas station. My daughter, she was six years old when we leave. In Siberia we can afford for her only one apple, maybe, in a week. My friends move to Israel, say you come too. But I like cold, not hot, so we come to Canada.”

  He’s the only immigrant I know who doesn’t complain about the winter. He and his wife both work as home care nurses, but he is writing his exams to qualify as a dentist. Once he qualifies, his wife will then write her exams. His daughter just started first-year science at the University of Toronto, and he now also has a son who is six years old.

  “I have a question.” He hooks the first bag to the stand. “Because always I see books everywhere here. I want to ask, can you recommend for my daughter. I want books for her, about love, about how to live.”

  “How to live?” I’m not sure what he means.

  “Yes, you know, to teach the best about love, life, what a young woman should know.”

  “Does she like to read?” I ask.

  “Oh yes, she reads a lot, mostly for school.”

  “The Book Thief?” For some reason it’s the first one that comes to mind.

  “Mmm.” He hesitates. “She has read this one, I think. She liked it very much.”

  My fantasy has come true, someone is asking me for a book prescription. But Yuri’s request is both too difficult and too easy. Aren’t all books about life and love? I think I know what he means, though, something beautiful, something inspiring.

  “Captain Corelli’s Mandolin,” I start again, “by Louis de Bernières. History of Love by Nicole Krauss. Umm…” Why is this so hard? “And, and, Lives of Girls and Women by Alice Munro.”

  The last is more moving than inspiring, but shouldn’t I have something real as well, and shouldn’t I have something Canadian? I don’t know why that’s important to me. Am I selecting a politically correct syllabus for a first-year English course or am I trying to give some helpful recommendations to my home care nurse? He’s entering the names on his phone as I give them. I spell Louis de Bernières for him.

  When he leaves, I start having second thoughts. I can’t believe I forgot Middlemarch, one of my favorite books of all time. And I’m feeling unsure about Captain Corelli, though I was obsessed with that book for years. I even edited down a passage from it about love and recited it at several friends’ weddings, and a friend read it at my own; about how love is when the two of you have roots that grow toward each other underground, and when all the pretty blossoms have fallen from your branches, you find that you are one tree, and not two. I used to think that was so perfect.

  I don’t think that anymore.

  Love is not a tree, because trees die. Love is a rock. And not stone that crumbles into dust. It’s the Canadian Shield itself, granite as old as the Earth, solid and unwavering beneath my weak and unsteady feet.

  I detest not only my ileostomy bag, but all my pills as well, cyclosporine most of all. Gray, greasy, and vile smelling, the smooth oval pills come in blister-packed perforated strips. I have to take five in the morning and five at bedtime. They make me feel queasy and troubled.

  “I can’t do it.” I gag after taking one and pace around the bedroom a few times to try to get rid of the feeling that I’m going to throw it back up again. I still have four more to go.

  “I don’t want to take them anymore.” I am now leaning on the dresser looking in the mirror at the reflection of Simon, behind me, reading in bed.

  “Then don’t,” he says, not even looking up from his book.

  I’m taken aback. “What do you mean ‘don’t’?”

  “I mean don’t. You can stop taking them.”

  “No, I can’t,” I sputter. “I have to take them to get better.”

  “Then you want to take them.”

  I frown, but before I can object, he continues, “Manjusha, that’s how you have to think of it.”

  The minute she reads my CaringBridge post about my struggles with cyclosporine, Kathie calls me.

  “That’s my fungus!” she says.

  “What do you mean, that’s your fungus?”

  “It’s the one I identified, that got all the publicity.”

  “When you went on Good Morning America?” I’m excited because I think I remember it all now.

  “Well, I didn’t go. It went by itself, without me.”

  “But it’s yours, you discovered it!”

  “I didn’t discover it.” She tries to explain as simply as she can.

  At the time Kathie made her finding, cyclosporine was already being used to suppress the immune systems of transplant patients. Pharmaceutical companies had developed the drug from a chemical they found in a fungus they actually knew very little about. Kathie describes the fungus to me as looking like “a bit of white fluff” on the forest floor. That fluffy fungus produces a chemical that helps it invade insects, so it can kill and feed off them.

  One day, while Kathie’s class was on a woodland foray, a student brought her a little fungus that hadn’t been seen in the Ithaca area before. It was killing a beetle. Kathie took it to her lab and grew it in a petri dish. She found that this beetle-killing fungus, when it grew in her lab, turned into the white fluffy cyclosporine-making fungus.

  Nobody had connected the two before. They were thought to be two completely different fungi. Apparently, you need to know what a fungi’s flowering state is, to know what it’s related to, and where it belongs on the Tree of Life, whose branches cover all living things: animals, plants, and fungi. As a result of this finding, money was raised to set aside land as a biodiversity preserve, and a drug company funded a bio-prospecting project to look for other fungi that could have medicinal properties. And, what had stuck in my mind, the fungus itself made an appearance on the breakfast talk show Good Morning America.

  “It’s like,” she searches for a way to help me grasp it, “it’s like, it’s as if we knew there were butterflies, and we knew there were caterpillars, but we never knew they were connected. And now we know.” I want to ask her which the cyclosporine is, the butterfly or the caterpillar, but I decide the analogy probably doesn’t stretch that far. Anyway, it’s as much information as I need. My unpleasant little pills suddenly seem full of fluttering personality.

  Even when I’m finally weaned off them, after months of the dosages decreasing, increasing, and decreasing again, I still feel a jolt of interest whenever I’m in the waiting room of the transplant clinic and I see someone take out the telltale foil strip of pills. I’m so tempted to sidle over and ask confidingly, “Do you want to hear something completely fascinating…?”

  Chapter Twenty-Five

  I enter the Queen’s Landing Hotel reception area at Niagara-on-the-Lake for a work-related conference. It’s my first large event in more than a year. Heads swivel, eyes flicker toward me, my head wrapped in a bright silk scarf, my face round and puffy from the steroids. I am pitied, I am admired. I am doomed, I am destined. I am battered, I am beautiful. I am cursed
, I am blessed. I hum with possibility, good and bad. I am assigned virtues, I am forgiven sins. I am not half anything, my glass is drained, it is full to overflowing. I can see people trying to work out if I am the luckiest or the unluckiest person they know.

  I scare you, I reassure you. When you fill me in on what’s been happening with you, you preface every story of broken bones and cancer scares with a humble “I know it’s nothing compared with what you’ve been through.” I like to win, but this is a contest I wish I never had to enter. You count your lucky stars, there but for the grace of whatever…. You cling to your children a little tighter. You wonder if the end of life as you know it is too high a price to pay for the chance to start a new one. I am ancient, I am reborn. I am considered brave because I am breathing. I am a rock star.

  I actually receive applause just for being alive. Whenever someone approaches me with arms warmly extended, my colleague Ann throws her arm in front of me like a parent does to a child when the car brakes suddenly. No hugs. She has spent the previous half hour in my hotel room wiping down all the surfaces with the hand sanitizer she packed especially for this purpose: tap handles, toilet flush, door knobs, telephone, TV remote.

  She collects me for breakfast and tells me she realized suddenly in the middle of the night that breakfast would be a buffet. A buffet! Touching a serving spoon would be like shaking hands with all 200 people in attendance at the conference. All previous precautions would have been for nothing. She serves me after I point out which pieces of bacon I want, which slices of French toast. I’m a preemie in an incubator, a woman in a niqab, a tiger in a cage. You can’t touch me.

  It took a while to obtain medical permission to attend that conference. I don’t mean a while for me to get strong enough to withstand the risk of infection, I mean a while until I found a doctor who said it was okay. My mantra of “small, achievable goals” gradually becomes more ambitious and crafty, despite frequent setbacks. When I moan at one appointment about my lack of progress, with the cyclosporine going tantalizingly down almost to zero and then right back up to ten pills a day, that day’s doctor tells me, “You’re a yo-yo on an up-going escalator,” and I cling to that image.

  I sign up for, and then cancel, my registration at an exercise program for cancer patients several times, until my doctors say I’m stable enough to go. Permission to swim in fresh water, the cool clear rivers and lakes I’ve been dreaming about being in ever since I got sick, takes another whole year, though not for lack of repeated requests. The first time I ask if I can return to work, the answer is a sarcastic, but kind “Sure, and then you’ll work for five minutes and be off sick for six months,” which I take as a no. Permission to go to a nail salon never comes, and I don’t bother pursuing it. I’m prepared to risk getting sick for work or for swimming, but not for a pedicure.

  The day I start my exercise class at Wellspring, on the grounds of Sunnybrook Hospital, I discreetly eye the other participants to determine where I am in relation to them. I’m disappointed to find I don’t come off well in my comparisons. Half seem on the older, frailer side and half on the younger, fitter side. I feel like I don’t fit in either category, because I’m younger than the oldsters, but frailer than the youngsters. I’m the only one wearing a cancer cap. I envy the thick hair of the women I chat with before the class begins. You know it’s bad when you’re jealous of women who have breast cancer.

  At my intake assessment, Nicole notes down my resting blood pressure, oxygen level, heart rate, and weight. She gets me to clench a small metal vise to check my grip strength and asks me to balance for one minute, on one leg at a time. I can’t do it. She comes up with a program for me, one that alternates between cardio and strengthening exercises. She warns me not to overdo it. “You have to listen to your body,” she says. I want to tell her that my body and I are no longer on speaking terms, ever since it tried to kill me all those months ago, but I don’t.

  The cardio is gentle—hallway walk, stationary bike, treadmill, only for three minutes at a time. The room is bright and new, lined on one side with windows, with trees blocking the view of the hospital across the various parking areas. The instructors glow with health and friendliness. There is music playing in the background when I start gently bouncing on a tiny trampoline, “I’m on my way, from misery to happiness today…” My heart bounds. I’m sure it’s a sign. Eventually, I realize it’s not a sign, but a CD, one they play at every single class. But still, I never get sick of that particular chorus.

  I enthusiastically check out program after program at Wellspring. First, a drop-in yoga class, where I blame my complete lack of flexibility (I can’t even sit cross-legged) on the cancer and ileostomy, when really I suspect I was never very bendy even before. Then a dance yoga session where Simon is appalled to learn that we sing a song (with actions!) about how when you send joy, joy, joy, out into the world, world, world, it all comes back to you, you, you (appalled because 1. He was actually considering going with me and, 2. I love the song and insist on singing it for days after). I even check out a couple of dry-sounding sessions about long-term disability benefits.

  There are also cooking classes I consider attending, but never get around to. “Healthy snacks” seem oxymoronic, like “jumbo shrimp,” but way less delicious. One time, walking past the class kitchen, I hear an excited, “I can’t believe this drink has lentils in it!” Me neither, I silently respond as I speed thankfully by. I still eat bacon, because otherwise the cancer wins. But I do decide it’s time to stop the Diet Coke, as I’m concerned about the aspartame Jack is always warning me about. Simon is incredulous when he sees the shopping list I leave on the counter for him, a few weeks after I start at Wellspring.

  “That’s your idea of making a healthy change?” he asks. “Switching from Diet Coke to regular Coke?”

  “I only drink half the can,” I say defensively.

  “Great, you can use the other half to clean the toilet.”

  “Very funny,” I scoff. “Like I ever clean anything.”

  I have to take an extended break from the program for my ileostomy reversal and recovery. The same amazing surgeon who saved me with the emergency ileostomy does the reversal. She calls me a “tough cookie” for surviving the first surgery. I tell her what I am most afraid of.

  “Homer says I should wait, in case I get cancer again, and have to do the operation all over.”

  She shrugs. “Everybody’s going to get cancer.”

  The surgery goes perfectly, but still I cannot resume the exercise class until months later. During these months, I have to go for daily appointments so a nurse can change my surgical dressings, check that the openings where the intestine ends poked out have healed, and remove the staples from the six-inch incision. The intervening time is long enough that Nicole’s partner has not only given birth to their baby boy, but they’ve even taken said baby on a trip to Australia. I give her a signed copy of my children’s book as a baby gift. She’s delighted, and even more delighted with the progress I’ve made. At my reassessment, I weigh more, grip harder, balance on each foot with ease, and stride forcefully up and down the hallway.

  “Okay, you’ve got ten weeks left, let’s set some goals.” We’re in the ante room sitting across from each other on comfy chairs.

  “I want to be as strong as it is humanly possible to be,” I say immediately.

  She laughs, pauses, and then writes down, “Increase heart rate to over 150 during cardio intervals.”

  “Next goal?” she asks.

  “I want never to get sick again,” I answer.

  “Improve posture,” she writes down.

  There’s a whole new group of people in my second go-round at Wellspring, and this time I’m in the vigorous half. I’ve even stopped wearing my cancer scarf; while my hair is not great, being self-conscious about the thinness is still better than wearing the cap or the itchy wig I briefly tried. Nicole keeps adding
things to my routine, five minutes on the elliptical machine, a dozen pulls on the wall-mounted stretchy thing.

  “I have a great idea for you,” she tells me one morning, instead of saying hello. I’m expecting something new involving the exercise ball, but it’s an idea for a children’s book.

  “You should write one where the kid just happens to have two moms, you know, but it’s not the point of the story. You know what I mean?”

  “Totally,” I say fervently. “I hate when the only time you see a kid in a wheelchair, say, is when the whole book is about that. That’s why, you know, in my story, Meena’s Indian but it’s not about that, it’s about how she hates books. She just happens to be Indian.”

  “That’s what I’m talking about!” Nicole is pleased I understand what she means. I’m pleased we’re not talking about exercising.

  Chapter Twenty-Six

  What I first want to write, though, is a better metaphor for my cancer. I’m a sucker for a good metaphor. One afternoon when Simon and I were sitting in the family room with my parents, a coyote actually walked up the ravine, right to our back door. He was more imposing, and more golden, than I had thought a coyote would be. He sniffed around the garden and driveway for a few minutes and then disappeared back into the ravine. My friend Casey told me it was a sign and wrote on CaringBridge, “My great-grandmother Kathleen used to say, if a golden coyote walks up to your door, it’s time to get a bigger purse for all the good fortune that’s coming your way. Be prepared.” When I mention to him, months later, how much I liked that image, he just looks at me. “I made that up,” he says.

  When we were looking into special science and math high school programs, Jack and I attended several open houses. I liked the one for the TOPS program at Marc Garneau Collegiate Institute the best, simply because of a metaphor.