Love and Laughter in the Time of Chemotherapy Read online

  “Because I’m careful?”

  “No, because you never do housework.”

  Good point, I think. I never ironed or vacuumed even when I was healthy, so there’s no way on earth I’m going to start now that I’m recovering from cancer. I remember a silk shirt I bought when I was in law school. It was dark purple, and shiny and soft, and fit me perfectly. But, once it went through the washing machine, it was a crinkled mess, and since I don’t iron, I never wore it again. I don’t remember what happened to it.

  When Simon’s mother came to visit us from England to help out after Jack and Anna were born, she asked me where the vacuum cleaner was and I couldn’t tell her. I had no idea where we kept it, and we had lived in that house for more than a year by that time. She had to wait until Simon got home.

  I have never fallen, never worried about falling, and now I’m scared. The woman farthest from me in my ward room fell down some steps on a train trip through the Netherlands last summer. That’s how she ended up here. I have pieced together her story by overhearing her phone conversations with friends. It sounded like one of those times when you’ve reached your destination, but there’s an announcement telling you to remain seated until the train has come to a complete stop; but no one ever pays attention because they’re too busy gathering their belongings from the pockets of the seats in front of them, or from the overhead compartments, and anyway the train is going so slowly. Then there was a sudden jerk as it came to a final halt. She fell down some steps, broke her hip, ended up in a European hospital at huge expense, and then at home in rehab for months. Whatever you do, do not fall down.

  I had already decided I was never going to go downhill skiing again. It was something we had recently started to do as a family. Simon was an experienced skier, and Jack and Anna picked it up quickly. I was terrible and terrified, but willing to try. No longer. Not a big sacrifice, I thought, because I do need to be more careful now, and I certainly don’t want to end up in hospital again.

  But the presentation slides are not warning about the dangers of skiing. They are about the dangers of stairs and socks, and those fringes on the edges of carpets. It seems either nothing is dangerous, or everything is. I may as well keep skiing.

  Still, I’m more bored than scared. Simon is past bored. There is still an hour to go. How many more variations on the theme of not falling down could there possibly be? We’re trapped in a far corner. I’m in my wheelchair and there is an obstacle course’s worth of wheelchairs and walkers between us and the door. I don’t care.

  “I have to go the bathroom,” I stage-whisper apologetically to the woman beside me. Finally the primacy of bathroom functions works in my favor. She shuffles back a bit, Simon grabs the handles of my wheelchair, and we make our escape, albeit very, very slowly.

  Later, I overhear the doctor taking a group of residents through the ward. “Leukemia used to be a death sentence,” he tells them. “Most people died.” They scuttle after him right past the foot of my bed.

  “Now it’s the reverse, most people survive.”

  Hooray, I think.

  “Pee! Pee!” the old lady yells.

  Chapter Seventeen

  I wanted to attend my stem cell drive on July 13, but I’m not in good enough shape to leave the rehab hospital. Kate and June give me a detailed account of it. Not only did they find all the rectangular tables they needed, but they found the donors. They were hoping to attract at least one hundred people to be swabbed, and in the end, 170 turned up, mostly young men, the most desired demographic because they have more stem-cell-rich blood than women. There were almost as many volunteers as there were potential donors. Dozens of friends and colleagues donated their time and provided food. There was lunch for the volunteers, many of whom stayed the whole day rather than just for their shift, and snacks for the donors. Even TV celebrities turned up—Sukhi and Jinder, contestants on The Amazing Race Canada. And an eleven-year-old girl, Cierra, who also was hoping to find a donor, and who eventually did find one, made an appearance with her parents to thank everyone.

  Then, on July 19, I learn that several potential matches have been found for me, 10/10 and 9/10. In the end they can’t confirm any of the 10/10 donors. I’m guessing it’s because the people are unavailable or unreachable for various reasons. But they are able to confirm one of the 9/10 matches, and the transplant is a go. Since it takes several weeks to process a cheek swab, the timing means the donor must have been from an existing registry, not from any of my swabbing events.

  The million-dollar question during my last interview with Alisa for the radio documentary is “How did you feel when you found out you had a match?” Unfortunately, I don’t have a dramatic answer, because it all happened so quickly. I’m focused on learning to walk again. I still have a third round of chemo to face, before I can even be considered a candidate for a stem cell transplant. I, who worry so much about everything, have not even had a second to wonder if a match would be found, before it was. The unlikeliest step of all in this journey, incredibly, ended up seeming like the easiest.

  “But that’s bad!” I say, much later, when Simon and I are lingering at the breakfast table, after Jack and Anna have left for school. My tea is cold, but I’m still taking small sips of it to delay going upstairs to my computer to write. Simon’s reading the Globe. “I was thinking all this time that finding a match would be the climax of the whole book. But it won’t write like that. It’s a nothing moment. Not exciting. Not dramatic. Why!?” He looks up and thinks for a moment.

  “I guess we had other things to worry about.” He’s right, but I still feel like I’ve failed my narrative.

  One time that first year when my friend Alison is visiting me in hospital, we get on the subject of our happiest days. “My happiest day this year was in January,” I tell her. “It was the one sunny day we had in Mexico and we went snorkeling and saw sea turtles. Jack and I saw an eagle ray. We ate tacos at a café right on the beach. We watched pelicans diving in the water. It was so great.”

  “My happiest day this year,” she says, “is when I found out you got a match.” Her response moves me deeply, but at the same time, it indicts me. That’s the answer I should have given.

  In the movies, when the hero (usually some tough athlete or cop) is learning to walk again, the thrilling moment is at the parallel bars when he drags himself along, grunting and sweating, to swelling music in the background. And I was looking forward to that. But I actually manage okay with the bars. My ability to walk while holding onto something comes surprisingly quickly. It’s releasing the bars that’s hard.

  “Let go of your walker,” my physiotherapist, Caroline, instructs me, a few weeks into my stay in rehab. I do, and she moves it out of the way. She has accompanied me back to my room after our session, and we’re standing in the area between the door and my bed. She pushes my tray table out of the way as well. She turns back to me. I haven’t moved because I’m afraid of falling. She raises her hand in front of her. She’s holding a small green bean bag, which I hadn’t noticed before. She drops it on the floor and it lands almost exactly between us.

  “See if you can pick it up,” she tells me. I grimace. She must know I can’t bend over, that I still have to use a plastic stick with a grip on the end to put my pants and socks on.

  She says, “Go as close as you can.” I inch my feet farther apart to give myself better balance, making sure to avoid stepping on the laces of my right moccasin slipper which, as usual, have come undone. I should cut them off, I think, they’re really just for show. Without realizing it, I have bent all the way down and when my surprised fingers make contact with the bean bag I instinctively close them around it and pick it up. I straighten, smiling for real now.

  “I did it!” I tell her, as if she hasn’t witnessed this miracle for herself. Then she tells me something even more miraculous.

  “You can probably go home on the weekend,�
�� she says. It’s Wednesday now.

  “How about tomorrow?” I ask.

  “Well,” she hesitates, “the doctor has to sign the discharge papers and he’s already left for the day.”

  “Can’t he sign them tomorrow?” I ask. She agrees.

  “He starts his rounds about 9:30. If you catch him right then, you could leave in the morning.”

  I wake up hours early the next morning, I’m so afraid of missing the doctor on his one trip through the ward. To my relief, I’m able to get the right papers signed by the right time. But, as Simon is about to wheel me out of my room, a visitor drops by. It’s a former colleague. It’s sweet of her to come. I haven’t seen her in years. I don’t want to be rude, but I cannot spend one more second in that room. I take the delicate spray of white and purple orchids she has brought me and hold the little pot on top of the pillow and plastic shopping bag of paperwork I already have in my lap. I suggest we chat as we head down to the parking lot, so Simon can go ahead and get the van. I listen distractedly to her anecdote about how her daughter did an internship at this very rehab hospital.

  “What a coincidence,” I murmur, all the while keeping my eyes peeled for Simon and our minivan. There it is. I can’t wait a single second more. I thank her for coming, and wrestle myself into my seat while Simon folds up the wheelchair and puts it in the back. I’m free.

  Chapter Eighteen

  “Remember me?” The doctor is wearing a mask but I can tell by her eyes that she’s smiling.

  I squint up at her from my wheelchair. At first she doesn’t look familiar at all, and then, “Oh,” I say slowly, “wait, from the cab that time?”

  I’m back in Sunnybrook. I had managed to do the week of consolidation chemo from home, but when a follow-up appointment found me feverish and too tired to even sit up while waiting for the doctor, I was readmitted. I had barely enough time at home to scrape a groove in the dining room hardwood with my walker. Now I’ve been wheeled down to have a biopsy, because of fears I have a fungal infection in my lungs. Two doctors come into the examination room and I realize I know one of them.

  We had met while standing shivering in a long line for a cab at the airport one snowy evening last January. I had started to chat with her because she seemed friendly and the line was just inching along. We discovered we lived fairly close to each other, so I proposed sharing a cab. It turned out we had both been in Ottawa for conferences, mine judicial, hers medical. We had a lot to talk about in the cab because her children were about the same age as mine, and also in French immersion. I never expected that I would see her again, much less have her be the one threading a painful scope down my throat, while I coughed and spluttered helplessly.

  As my eyes tear up and I gag on the scope, she is reassuring: “Almost done. You’re doing so well.” And even when she takes the scope out and says apologetically that she has to do it again because she couldn’t manage to get a proper sample the first time, she says it so kindly that I almost don’t mind.

  “The good news is that Jack and Anna are okay.” These are Simon’s first words to me. I’m alarmed rather than reassured. He had correctly anticipated that my first question for him that day was going to be “How was the camping trip?” But I had not anticipated his response; not at all. We’ve been going camping for a week every summer with the same group of families since Jack and Anna were three years old. This year Jack and Anna went without us, taken instead by Sharon, Paul, Cole, and Noah. Since they don’t have a car and were going to rent one, I had insisted they borrow our minivan.

  “What happened?”

  “Sharon was brushing a spider off her lap and her hand hit the steering wheel. She drove off the highway and crashed the van.”

  I can’t think of anything to say.

  “No one was hurt, but the car’s totaled.”

  Apparently, the front end crumpled, and every window shattered. I see Jack and Anna later that same day, and they seem unbothered. Jack’s eye is slightly red where it had been hit by some bits of glass. Anna had been protected by her glasses, one of the lenses of which was slightly chipped by the flying glass. It was over so quickly, they didn’t have time to panic, they tell me. Before they knew it, they were sitting by the side of the road joking and chatting with Cole and Noah, while waiting for the other camping friends to collect them and bring them home.

  Since I hear about it only when it’s all safely over, I don’t have time to panic either. But it makes me realize that I had been assuming I was immune, at least temporarily, from other tragedies. I can’t be in the hospital being treated for leukemia and have a child die in a car accident. Right? Right? I hadn’t realized it until this moment, but, since my diagnosis, I had stopped worrying about Simon and the children, and now I have to start again, even though the only lasting impact was the one on our car.

  The spring when Jack and Anna were two and a half, we went to an international children’s theater festival to see a play called Rabbit in the Moon. It started with a woman who passed out little slips of paper and pencils and asked us to write down our deepest fears. She then collected them to take them to the moon, but before she did so, she asked some people in the audience to read their fears aloud.

  “I’m afraid my son will die,” the woman next to me said. Her son, maybe six years old, was sitting beside her at the time.

  I was astonished. Doesn’t she know you can’t speak these things out loud? Who knows who is listening, and what power over life and death they possess. I don’t remember what worry I wrote down, but I know it wasn’t a real one. I thought then that there were things you could do, or not do, to protect yourself. I thought there were rules. Worry all you like, but never speak your worries out loud, was one of them. I did not know then, that voicing or not voicing, worrying or not worrying, makes no difference at all.

  When the play ended, the ushers beckoned to Jack and Anna to lead everyone out, and off they went, hand in hand, as directed, through the curtain. I was so surprised that they went trustingly, without protest, when usually they were shy, that I remained still sitting until the curtain fluttered closed behind them. And only then did I leap to my feet, to scramble through the other audience members, so I could follow them out before they got too far ahead.

  Why do I ever let them out of my sight? Come to that, why did I go through all the paperwork to get them British passports, of all things? Why do I worry so much, yet aid and abet them to go so far away? They disappeared once for a few seconds, and each subsequent disappearance will be longer and longer until, poof, they’ll be gone.

  My first roommate this time around is an old woman, gentle, with a faint British accent. Her husband is gentle as well, with a faint German accent. Once in the evening when she hears me weeping with despair (as I am wont to do), she calls out, “Would you like my husband’s hand to squeeze?”

  It makes me smile, even as I decline. Her children and grandchildren seem similarly sweet and innocent. I overhear her commenting to her daughter once about how quiet it is on the ward.

  “Barely any visitors around today,” she says.

  “Oh, well, you know, you’re at the far end of the hospital,” her daughter replies. I picture fed-up visitors stopping, worn out, at the bedside of just any random patient, because it’s closer than the one they have actually come to the hospital to see.

  “When you can walk, you can go home,” the physiotherapist encourages her cheerfully every day.

  “I will walk when I get home,” she responds, uncheered and unencouraged. “They fixed one thing and ruined another. They didn’t start the radiation soon enough. I could walk when I came in.”

  “So that means we have to do physio,” the therapist counters brightly, undeterred. “Let’s do ten minutes. Try lifting your right leg, come on now, easy, peasy, lemon squeezy! It’s a matter of functionality—”

  “I don’t need you to lecture me, I’m
seventy-nine years old.”

  “Either you want to participate or not.” The physiotherapist who started out speaking to her with over-the-top enthusiasm like you would use with a toddler eventually becomes testy and starts to talk tersely about how she is a professional with years of experience, and the woman needs to listen to her for fuck’s sake. She doesn’t exactly say for fuck’s sake, but it is clearly implied; in any event, her tone is a far cry from the lemon-squeezy she started with.

  “I’m going,” the woman’s husband says, his voice shaking, as he gets up to leave the room. “I’m too mad to stay.”

  “Don’t you want to stay and see what we’re doing?” the physiotherapist asks. “All you do is push her in her chair. That won’t make her better.”

  “Do you think she’ll ever have strength in her legs?” he asks.

  “The doctor will reassess. We should have a family meeting.”

  “No.” He goes. The physiotherapist sighs in exasperation.

  “Don’t you look at my husband that way!” the woman says quickly.

  “I didn’t look at your husband in any way. If I wanted to say something I would say it.”

  The standoff was messy, but the solution is elegant. In an impressive “make it someone else’s problem” move, the upshot is that since she came to Sunnybrook from another hospital, really they are the ones with the authority to send her home, and so she’s sent back to the first hospital.

  She is replaced by another older woman with two middle-aged daughters, whom I can’t tell apart. They dress in similarly shapeless skirts and blouses and even wear the exact same running shoes. They spend night and day arguing loudly with the doctors and nurses about what treatment their mother should be getting. They speak so harshly that I don’t even recognize their language as Spanish (which I have always thought of as so musical) until a Spanish-speaking nurse converses with them. They are always pushing for more tests to be done, and then redone. They commandeer a wheelchair as an extra place to sit, since there are two of them, even though wheelchairs are scarce on the ward.