Love and Laughter in the Time of Chemotherapy Read online

  Simon comes every single morning and sometimes again in the evening with Jack and Anna. He’s a stay-at-home dad and has been ever since I returned to work after my maternity leave. Even while I’m in the hospital, he keeps their routine steady: homework, piano, board games or TV, bed. He does everything and acts like it’s nothing. “Kate says you’re too modest,” I relayed to him once.

  “I have so much to be modest about” was his quick response.

  When Simon returns, he sighs as he sits down in the chair and slides the computer with a thump onto the windowsill.

  “I can get a connection in the visitors’ room outside the ward doors,” he reports.

  “Past the elevators?” I ask. “Not the visitors’ room next door?”

  “Not the one next door,” he confirms.

  “I think the food court works too,” he adds. The food court is a few floors down, but it might as well be a world away. I can’t imagine being around regular people, lining up, and buying and eating wraps and pizza and falafel, the cacophonous bustle, the competing smells.

  He’s trying to get me reconnected so I can read the responses to my first entry on CaringBridge. Kate set up the account for me. It’s a free website meant to help sick people keep in touch with family and friends during an illness, or “health journey” as they so brightly put it. Rather than labor at trying to email all my friends individually, the idea is that I can post one entry that everyone (who has been given the password) can read. People can then post comments back. Simon has been posting brief entries from home, keeping friends up to date about how my treatment is going until I have the energy to do it myself.

  Kate and I met in our first year of law school at the University of Toronto, and she has been there for every important milestone in my life. She spoke at my wedding and at my swearing-in as a judge. I joked then that her next speech would be the eulogy at my funeral, which is not so funny now. She ended her wedding speech for me by referring to one struggle we had shared, our sometimes despairing search for true love.

  She described a single friend of hers who was fond of saying “Whenever another friend of mine gets married, a little piece of me dies,” but said that she felt exactly the opposite; she felt the story of Simon and me finding each other in Africa is proof that “there really is a fairy tale waiting to be written for every one of us—we just have to get out our pens and start writing.”

  I am eventually able to release a small grateful post thanking everyone for the wave of support that lifted Simon, Jack, Anna, and me up before we even had the chance to sink under the weight of my diagnosis. Friends put up a meal schedule through the same website and it seems like every single person I have ever known is dropping off a dinner at our house: old friends, new friends, parents of Jack and Anna’s friends, even classmates from law school I haven’t seen in almost twenty years. Simon brings in leftovers to share with me: Vietnamese rice paper rolls, Mexican empanadas. When I ask who brought a particular dinner, he sometimes has no idea, he hadn’t recognized the name at all.

  Anna is perplexed. “Who are these people?” she would ask, as yet another person knocked at the door bearing a chicken pot pie. Very soon Simon’s mother Tricia arrives from England to help Simon in any way she can, keeping the house clean, walking Anna to school, playing endless games of Scrabble with Jack, trying to keep things normal.

  I am now impatiently waiting to see what the responses to my post are but am thwarted at every turn. Simon suggests asking one of the computer-savvy nurses for help, but he is not on duty that day. There is also the young orderly who had helped us the first time, but when we appeal to him now he doesn’t know why the connection is no longer working when it had worked so easily at first.

  He can’t stay long to help us as he’s on his rounds delivering large Styrofoam cups of ice water to every patient. I accept one from him even though I have scarcely touched my morning cup. I hoard them when he comes by, ever since my mother notified me in appalled accents that the nurse who delivers the water when he’s not there fills a plastic bucket with water and ice and then dips the cups in along with her fingers, whereas he fills each cup individually, at the ice station.

  In the end, I manage to connect with my office IT person for help. It’s great, and not only because he’s able to tell me how to change my computer’s configurations to connect to the hospital’s Internet provider, but because he refers to me respectfully as “Your Honor” whenever he tells me what to type next. The title, and even more than the title, the deference in his voice, is a surprise to me. Even though I’ve been in hospital for only a week, I’d already forgotten I was anything other than a sick person, or that I’d ever been anything other than a sick person.

  Although the doctors and nurses and other staff are always extremely kind, there is a power imbalance as there always is between the strong and the weak, the adult and the child, the well and the sick. Suddenly I’m reminded I’m more than just a sick person. And, after days of trying, I now have bedside Internet access.

  It seems counterintuitive that writing about being sick could serve as a distraction from being sick, but it’s true. Author Dave Eggers writes that sharing pain dilutes it, and I agree. Lying awake in that dead zone between when they wake me up to take my vitals at 6:00 a.m. and when breakfast arrives at 8:00 a.m., I occupy myself by composing a post. In the background I hear a nurse speak sharply to someone in the visitors’ room next door: “You’re not allowed in here overnight!” People are always doing it, though; not everyone lives within a convenient drive of midtown Toronto, and not everyone can afford a hotel. I miss what the person says in response as I’m busy propping myself up with pillows. The concentration required intensifies my nausea, and my vision is a bit blurry, so I can’t type very long. But although the typing is a chore, the composing is fun.

  I lie awake and plan out my post in my head. I obsess over it until it’s a relief to finally post it, because then I can stop thinking about it. It’s like Dumbledore’s Pensieve, the silver basin in which he places his thoughts when his head gets too full, so he can relax and examine them at his leisure later.

  Really everything makes me think of Harry Potter because I practically know the books off by heart. I have read them out loud to Jack and Anna three full times (all seven volumes) and I was halfway through a fourth reading when I got sick. I have perfected my voices—I do an especially good Umbridge and Moaning Myrtle—and I now know better than to interrupt my reading to start a discussion. In the beginning, I often got sidetracked. When Harry gazed into the Mirror of Erised (which shows your heart’s desire), I paused to ask Jack and Anna what they thought such a mirror would show them if they looked into it. Jack was having none of it.

  “It would show you,” he said promptly, “reading Harry Potter. Keep reading!”

  CaringBridge is that mirror as well as that Pensieve. It shows both my hidden fears and my heart’s desires. It sometimes looks like Jack’s grade 2 journal. He took it very seriously and wrote down every single thing he did. I tried gently to suggest that, in years to come, when he looked back and read it, he would be more interested in what he was thinking about, rather than what he was doing. But he ignored my suggestion (as usual) and kept up with his almost-in-real-time entries. I remember one entry began, “Now I am walking down the stairs to the kitchen…” His teacher had to institute a three-page-a-week limit because of Jack and his minutely detailed, endless entries. He didn’t realize it was because of him, and he came home one day and innocently told us that his teacher had announced she would just stop reading at three pages, no matter how much else they wrote.

  I will try not to inflict so much detail on my own readers, but just like Jack’s teacher, you are free to stop reading at any point.

  Chapter Six

  My mother comes every morning and brings me breakfast, often French toast, kept warm in a Thermos, with a carefully wrapped bottle of maple syru
p to accompany it. Sometimes that ends up being a problem. I was once happily halfway through my first slice when a nurse walked in and stopped in dismay.

  “You’re not supposed to eat anything before your scan this morning!”

  “No one told me,” I protested.

  She checked my chart. “They sent an order in cancelling your breakfast tray.”

  But of course I mostly ignore the trays the hospital provides, so I did not notice that. She checked with the technician doing the test and luckily it turned out half a piece of French toast wasn’t going to affect the test and it could still go ahead. The tests are endless and awful. Sometimes I have to have an empty stomach, sometimes I have to force myself to drink a disgusting two liters of something that smells like chlorine, and sometimes they hook me to an IV line that injects me with dye to provide contrast when they look at the results.

  My mother usually stays until Simon arrives around 10 a.m. She comes back around 5 p.m. and brings me dinner. It’s the Maharashtran food I crave: lentils and potato patties with tamarind sauce, crêpes made of chickpea flour and green onions, and my favorite dish made of tapioca (but savory, not sweet) that’s cooked with a bit of oil, potatoes, ground peanuts, and fresh coriander and that you eat with yogurt. It’s May, which means mango season, so she brings a couple every day, which she cuts up on the windowsill and gives to me in a literal, rather than the usually symbolic, offering of devotion. They’re special Alphonso mangos from India, available in Indian grocery stores here in the spring. Originally cultivated by Portuguese settlers, they are deeply orange with perfect smooth flesh, not stringy like those big red mangos you more commonly see.

  Simon has lunch with me every day, but rarely without interruptions.

  “It’s time for your rectal exam,” a doctor says in the middle of one lunch.

  “Can it wait until I finish my ice cream?” I ask.

  “No problem.”

  “Thanks.”

  “Well,” Simon says, at the thought of a dining establishment that insists on offering such services between courses, “I certainly won’t be coming here again.”

  I’m doing so well with respect to eating that I actually worry I will be the only cancer patient in history not to lose any weight. Then the full force of the chemo hits me. I get terrible diarrhea. I spend forty-five minutes in the bathroom, return weakly to my bed, only to turn around instantly, dragging my IV stand, to head right back to the bathroom. At first the doctors suspect I have C. difficile, a highly contagious, potentially life-threatening, intestinal infection. So I’m put in isolation with a special sign by my bed and I’m not allowed to use the communal bathroom. When Simon and my mother come to visit, they have to wear a hospital gown, mask, and gloves. A nurse sets up a makeshift toilet for me that is a wheelchair with a bedpan built into the seat. It sits inches from my food tray.

  Eventually they confirm I don’t have C. difficile and the isolation is ended. I still don’t feel like eating. Simon tries to insist. His formerly gentle tone becomes steely.

  “You have to eat something,” he says sternly. I refuse.

  I’m more amenable to his efforts at getting me to walk, because I like to walk, even here. He pushes the wheeled IV stand because it is too heavy for me and holds my hand to help me balance. I feel like the distance between being sick and being healthy is a physical distance, one that I can cover if I just walk far enough.

  We make lap after lap of the ward, trying to avoid glancing into any of the rooms, holding our breath at times at some of the smells that even the harsh chemical cleansers can’t mask, and edging by the patients lying in beds in the hall while waiting for a room to be free. It doesn’t occur to me then how rooms can become free.

  I’m in the mood for visitors again, but I don’t reinstate the schedule. Instead, I invite people as I feel like it. Kathie is the first. She’s driven all the way from Ithaca, New York, to see me. She’s a professor of mycology (the study of fungi) at Cornell University and my oldest friend. I met her in the middle of grade 1 when my family moved to the house where my parents still live today. We did everything together: We scrabbled for fool’s gold among the gravel of our school’s baseball diamond; we joined a pillow-making class; but most often we played at being orphans escaping from cruel orphanages, making our way in the world alone, and seeking our fortune (a box of crumpled-up balls of aluminum foil).

  I was obsessed with orphans. They were my favorite heroes—Anne of Green Gables, Jane Eyre, the girl whose name I forget in The Wolves of Willoughby Chase—and my favorite subjects for the plays that I would write or adapt, and that Kathie and I would put on for our admiring parents and bored little brothers in her backyard. Orphans were heroic, tested by tragedy and marked for greatness. I often wondered if I would ever be tested. Would I be brave? Would I leap in front of a bullet, say, to save someone?

  When Kathie arrives, she looks fantastic. She’s wearing eyeliner, which she doesn’t normally wear, and it makes her eyes greener. Long, twisted earrings dangle from her ears, catching the light when she tilts her head to laugh. She laughs a lot. She swings her feet back and forth.

  I’m tired. I get short of breath after talking just a little while.

  She takes out her phone to show me photos of her new boyfriend. New, new, as in they met the night before and hit it off immediately, one of those dates that begin as coffee, then lunch, then a walk, then dinner, and soon it’s twenty-four hours later, and it’s love. She’s giddy. One of the photos is of their bare feet, leaning in to each other, where the trail pauses and dips down to a waterfall.

  I think, now I’ll talk, I’ll tell her what is going on with me. But how can I do that? I have no way to enter this conversation. It wouldn’t be a back and forth. It would be a foreign language, a burst balloon, a cold rainfall. What have I to do with first dates and earrings? I am happy for her, in my mind, I am. It’s just my heart that has no room for anything other than me, other than fear. I am that selfish.

  I actually banish my brother and my father when, during a visit, they start a lively discussion about Rob Ford, Toronto’s then infamous mayor. I’d been in the bathroom for half an hour, returning to face a cold dinner tray. Harish is busy teasing my dad for having voted for Ford. My dad tries to defend himself and then they move on to the next City Hall scandal.

  At this point I burst into tears. “I can’t do this,” I gasp. “I can’t talk about this, I can’t…” I can’t even speak now, I’m sobbing so hard. Harish and my dad scurry out of the room. I’m crying and gulping for breath. My mother tries to be soothing, but her eyes are filling with tears as well.

  “It’s okay, it’ll all be okay,” she murmurs. “We’re a team. We’ll get through this. You need to eat. Please.”

  For a while, all the gifts lift my spirits. Not only do I receive a constant flow of flowers, gift baskets, books, and cards, but shortly after being admitted I awake from a nap to see thirty beautifully wrapped packages piled on my windowsill, one to open each day of my stay at Sunnybrook. No card is attached. I immediately think of Ann. She was at school with Homer and me and is one of my closest friends. She is so incredibly kind and thoughtful that I assume it must be her. She is silent for a moment on the phone after I spill out my gratitude to her.

  “I wish it was me,” she says, embarrassed. “I wish I had thought of it. But it wasn’t.” Now it’s my turn to feel bad that I’ve made her feel bad.

  The gifts turn out to be from Peter. He’s not going to let me forget this. First I overlooked him as a potential pallbearer, now this.

  In the beginning I open one a day, as directed. The first is a journal, which is so perfect, dusty rose leather with both a ribbon and an elastic to keep your place. It is lined and falls open easily. I use it to record email addresses, phone numbers, Kate’s Netflix password that she gave me so I could watch Downton Abbey, medication dosages, questions for doctors and thei
r responses, quotes from books I’m reading, even scraps of dialogue I overhear. Even while I’m suffering, part of me is assessing the anecdotal value of everything that’s happening to me, thinking this is great material.

  “Too bad the title A Heartbreaking Work of Staggering Genius is already taken,” I mourn to Simon.

  “Should you really be worrying about titles for your book right now?” he asks.

  He’s right. I start mentally writing the reviews instead.

  Not all the presents are so perfect. One night, nauseous and fatigued from the chemo, but unable to sleep because my throat is so sore that every swallow is a slash of a knife, I open a chess set and a box of peanut brittle.

  Finally, one day I’m just so sad I open the last dozen presents all at once. I sit in a sea of torn paper and ribbons, surrounded by silk scarves, organic goat’s milk soap, a kit to make little fuzzy felt creatures, a book from the point of view of the servants in Pride and Prejudice. It’s a distraction and I’m grateful, yet still I weep. I’m not a child at a birthday party. I am a forty-seven-year-old woman chained by an IV line to a hospital bed, wracked with the side effects of induction chemo, and I may not make it.

  All these gifts make me think of The Big C, a TV series in which Laura Linney plays a mother dealing with a cancer diagnosis. There’s an episode where her teenage son, visiting her at the hospital, goes to get her something out of her purse and finds a key with his name and a strange address on it. He goes to the address and it’s a storage locker filled with presents, all beautifully wrapped, even a car, all for him: for his sixteenth birthday, his eighteenth birthday, his high school graduation, his college graduation, his wedding. He breaks down, and this is what I think of, will I do this for Jack and Anna? Will I arrange for gifts beyond the grave?

  Chapter Seven

  A week after the end of the chemo I start to feel a bit better, right on schedule. I’m done with the fevers it seems, and the blood transfusions have helped. Simon takes me outside for the first time since my admission. I sit in the wheelchair and enjoy the sunshine, but not for long because chemo makes your skin very sensitive so you have to stay out of direct sunlight. It happens to be Mother’s Day.