Love and Laughter in the Time of Chemotherapy Read online

  Mother’s Day on the Oncology Ward sounds like the title of one of those after-school specials I used to watch as a child on TV in our basement rec room. The ones with improbable calamities and unlikely victories, like the child who sets off firecrackers while skiing, losing both her sight and her legs, but, against all odds, learns both to see and walk again. I don’t think they make them anymore. Too cheesy for today’s sophisticated youth. Jack and Anna did not even understand that expression when they first heard me using it; unsurprisingly, it happened during a family trip to Florida and involved a giant inflatable shark.

  “You mean covered in cheese?” they asked.

  They sounded like Simon with his definition of irony: “When your hand gets sore from ironing too much.”

  So I vow not to shed a tear that day (a big deal because I’m crying every single day at that point) and I manage it because it is just too clichéd and over-the-top, movie-of-the-week melodramatic to have Mother’s Day in a cancer ward, so I refuse to succumb to that, concentrating on concrete steps to get ready.

  I take my first shower since being admitted. I have to comb my hair with my fingers though, having thrown out my hairbrush, in a dramatic “I won’t be needing this anymore!” moment, only to find that my hair did not fall out as quickly as I had anticipated.

  I pick out a fluffy scarf, from the ones friends had given me, that I think best matches the faded blue of my hospital gown. I drape it fetchingly around my neck, trying to hide where the Hickman line sprouts from my chest and attaches me to the IV pump. Then I install myself in the visitors’ room next door. I feel that would look nicer than greeting them lying down in a hospital bed.

  While my mother and I are waiting for Simon to arrive with Jack and Anna, there are two other visitors in the lounge: a heavy dark-haired man and a skinny woman with inch-thick glasses who does not say a word the whole time but who never stops staring at me.

  The man tries to begin a conversation with the pleasant opening of “So, what kind of cancer do you have?”

  Without looking at him I say, “I’m sorry but I don’t really feel like talking.” So he and the other woman remain silent but still weirdly attentive to our family gathering. I manage to ignore them because I am getting very accomplished at ignoring what I cannot control (which is 99 percent of what seems to be happening to me these days).

  At this point, thankfully, Simon and the children arrive. I can’t take my eyes off them. I have always held the unbiased belief that they are beautiful, but, in the context of this bleak cancer ward, they seem to be emitting a golden glow of health and happiness and unblemished perfection.

  I admire artwork from Anna and a birdhouse Jack made at Scouts. In Jack’s card, he lists things I do that he appreciates, including that I “give him neat ideas,” which I am surprised by because I had the impression he actively resisted all my suggestions (starting right from grade 2 when he burst into tears because I suggested a slight improvement he could make to his ferret diorama).

  When I lose steam, Simon and my mother go to my room to collect some things before taking Jack and Anna home. The woman who had been watching us has, by now, sidled closer and closer, so fascinated does she seem to be with the proceedings. To an outsider, she would look like part of our group. The man has moved closer too, and is now sitting on one side of Jack while I’m on the other.

  I hear him ask Jack, “Hey, what’s your mother’s name?” and Jack tells him.

  The man then stands up in front of me and, while my children look on, he says loudly and distinctly, “Manjusha, I am going to pray for you.” I couldn’t have been more horrified if he had flung out an arm and cursed me.

  “Please, not in front of—” I say, gesturing feebly at Jack and Anna, because I’m terrified his next words will be that he is going to pray that I will not die. But he goes on as if I haven’t spoken, and repeats, “I am going to pray for you.” And then, finally, finally, he exits the room, leaving me shaking and livid, Jack and Anna bemused, and the woman still smiling brightly at us all.

  I hated him at that moment and hate him still with an implacable hatred such as I have never felt for anyone else in my life. I think it is because he put in jeopardy all our careful protection of Jack and Anna, and also because he made me feel trapped in a way I have never felt before. I did not have the breath to drown him out and I did not have the strength to leave the room.

  I was horrified because I thought his words would make Jack and Anna think I was on my deathbed. Because nobody prays for you unless the situation is dire. If you have the flu or break your leg, people send you a “get well soon!” card and most often a humorous one at that. A Far Side fowl with cat-eye glasses and 1950s apron serving her sick son a bowl of chicken soup, saying “Quit complaining, it’s nobody we know.” But when you have cancer, suddenly you are in everyone’s prayers. Even Peter, who is an atheist, told me, “I don’t believe in God, but I’m praying for you anyway; let me know how that turns out.”

  I’m an atheist too, but I’m firmly convinced that if I turn out to be wrong and there is a God, and all the accompanying heaven/hell thing, I am definitely going to heaven. I have no theological basis for this, but I know that it would be ridiculously unfair if I were barred because of what I consider to be a mere technicality, which I equate to the minor procedural irregularities I see in court all the time, and which I either ignore or patch up after the fact in some way. Because, while I do not believe in God, I do believe in justice.

  It’s silly, I know. Clearly, having a mother who’s okay one minute and then hospitalized the next with a diagnosis of cancer has likely worried my children more than anything a random stranger might say. All this eventually does manage to seep into my hysterical brain and I take a deep breath. Jack and Anna seem unfazed, so we chat normally until Simon returns to the room to take them home.

  I never stop thinking of my children, not only on Mother’s Day, but every single minute of every single day. I try to comfort myself with the cliché that children are our link to immortality, that we continue to live through them. My mother tells me, “You always carry your mother inside of you, no matter what.” Or, as I think of it, like I’m Lord Voldemort and Jack and Anna are my Horcruxes. At the very least, they can use this experience to answer the “give an example of how you dealt with adversity” question in their future Harvard applications. So it won’t all be for nothing.

  One of my favorite doctors has two lines he repeats to me almost every time he sees me and I love them both. The first is about the chemo I am on: “I’ve never seen this course of treatment fail!” The second is “You’ll be dancing at your children’s weddings!” The first line fills me with optimism. I have never heard of a doctor being so definite before. This is so great. As almost everyone else in the world will appreciate, not being as naive as I am, there is, sadly, a reason doctors are not usually so definite.

  The second line never fails to move me to tears, but they are happy tears. Every word expands to be a promise of a perfect life, the one everyone hopes to have, the one that, before my diagnosis, I took for granted I would have: I will live that long; I will be healthy enough to dance at that advanced age; my children will both get married. He makes me feel like the poor, blind, barren woman in the only fairy tale I ever read where being granted a wish turns out well instead of poorly: She wishes she could lay eyes on her newborn child in its solid gold cradle.

  I always used to feel impatient with all those idiots who used up their wishes so stupidly, like the man who wished for a sausage, and finally here is a clever woman who beats the fairy tale odds, and my doctor makes me believe that I can do it too.

  Chapter Eight

  “A textbook case of recovery from chemo!” That’s what my doctor tells me I am. “Ordinary and boring,” chimes in the hospital pharmacist who often accompanies the doctor on his rounds. I am relieved. In the outside world, individuality is prized
; but here in the cancer ward, the last thing you want to be is unique.

  They discuss with me the question of whether chemo alone or chemo plus a stem cell transplant would give me the best chance of a permanent recovery. Apparently, it used to be that if you had “good” or “standard” leukemia, you did chemo alone and if you had “bad” leukemia, you did a stem cell transplant. I fall somewhere between “standard” and “bad.” But in the last year, Princess Margaret Hospital, the leading cancer hospital in Canada and one of the best in the world, has changed to recommending a stem cell transplant even for standard leukemia. But you have to balance that with the chance that you may not survive the transplant. It is a much riskier treatment than chemo.

  At this point, all I know is that getting a stem cell transplant means replacing my immune system with a donor’s immune system, since mine was unable to fight my leukemia.

  There are about 340,000 potential donors on the Canadian stem cell registry, but only about 4 percent are South Asian, and a donor of the same race is more likely to be a genetic match. Many ethnicities are under-represented on the registry. Three-quarters of the potential donors are white. This means my pool of potential donors in Canada is only about 13,600. The Canadian registry is part of a worldwide registry of 24 million people, but still, most of the registries are in Western countries, so the chances of my finding a racial match are low. About 800 people in Canada are waiting for a matching stem cell donor to be found.

  My brother is tested and is crushed to find out he’s not a match. He’s been driving from Waterloo to visit me regularly, bringing take-out food, like sushi and shrimp chips, to tempt me, and writing me weekly letters always including photos of my bright-eyed nieces. He really wanted to be the one to help me.

  Even though I don’t know yet if I will need a stem cell transplant, and even though I hope I will not need one, I decide I have to get on this now. I feel I must start planning for that extreme contingency. If there’s no match for me on the existing registries, I’ll have to do some sort of public plea to get more people to sign up. I learn that all it takes to get your genetic information is a cheek swab. And if you’re a genetic match for someone, making a donation is similar to giving blood, because stem cells are circulating in your blood. Ten genetic markers are compared to see if someone is a match. Harish was only a 5/10 match and what I need is a 9/10 or 10/10.

  It takes weeks to get the results from a cheek swab, and thus it may take months to find a donor, if I find one at all. So even though I don’t know if I’ll need it, I had better start looking now or it could be too late.

  Brampton, a city just outside Toronto where I used to preside, has a large South Asian community. I decide to ask two South Asian lawyers I know, Sonia and Raj, to help me get the word out. I call June to get their contact information. June is my Brampton judicial colleague and friend, but she is more like a fairy godmother. She swooped in when I was first admitted to hospital with flowered pillowcases, organic fruit juices, and homemade meringues. Instead of giving me their emails, she says simply, “Leave it to me.”

  June calls me back very soon. She has contacted Sonia and Raj, not just to ask people to sign up, but also to organize an actual stem cell drive, where people can give a cheek swab.

  “Manjusha!” She always greets me like I’m someone she has been dying to speak to. “Listen, can you call OneMatch? Are you able to? I really think you need to.”

  OneMatch is the division of Canadian Blood Services that deals with finding stem cell donors. She does not say any more at that point, but gives me the phone number and hints that it will be clear to me what she is up against once I call.

  I call and get such a lengthy explanation of the hurdles and the protocols I feel almost a suffocating panic at the thought that OneMatch may not be able to help me. Then, after persisting and asking a few more questions, I learn it is only a matter of my signing some forms to get the process started.

  June updates me regularly and I get to witness firsthand what happens when the immovable object of bureaucracy meets the irresistible force of a reformer. June and an army of others have come up with several locations to hold drives, places to reach South Asians—a Hindu temple, a Brampton recreation center, an Indian strip mall. “But OneMatch will only do one drive, that’s it,” fumes June. “So we have to pick, I think the temple on June the twenty-second would be the best.”

  Then a few days later, “You won’t believe this, but they say there’s not enough time to get ready for a drive on the twenty-second, even though we’re ready to go; we have the flyers and everything. The earliest they can do is July thirteenth. Something about revising their training materials and the kits won’t be ready in time. But Dr. Lala said South Asians 4 Life has at least a hundred kits. I don’t know why we can’t use theirs, he can do the training.” She pauses for breath. “You know, I wanted to check with you first, I don’t want to do it without your approval, but I think we need to go higher up in Canadian Blood Services and complain. This is outrageous, it’s totally obstructionist, but I’ll leave it up to you.”

  I hesitate. I don’t want to seem ungrateful for her passion on my behalf, but I am kind of fixated on my own selfish desire for a stem cell donor and I don’t really want to alienate the only organization that’s in charge of searching for one for me.

  “If it was a three-month delay,” I tell June finally, “I’d agree with you, totally…but…since it’s only three weeks, maybe, better stay on their good side?” June reluctantly agrees.

  “Of course,” she says. “That’s fine.” Though it is not fine at all as evidenced by her next call to me. The problem this time is the realization that July 13 is the day of the World Cup final and there may be many soccer fans among the young South Asian males they’re hoping to attract to the drive. But one of the drive organizers says he can make sure there will be a TV at the Hindu Heritage Centre, so people can catch the game; and besides, the drive starts at 11 a.m. and the match isn’t until the afternoon, so hopefully it won’t even be an issue.

  Then it’s a problem with tables.

  “Manjusha!” June says. “You won’t believe this. They say the tables have to be rectangular and the center only has round tables.”

  “I don’t understand,” I say, “why does it matter?”

  “Oh, something about the volunteer having to be across from the donor while they’re explaining the process. I told her we can make sure they sit side by side at the round tables, but it’s not good enough.”

  June calls back to say they managed to find rectangular tables.

  “When you’ve had your transplant, we’re going to take this all the way to the top,” she fumes. “We’re going to rebuild this organization from the ground up. This is unacceptable.”

  I am relieved. Yes, I agree, absolutely, when I’ve had my transplant, we’ll do all of this. I will help you, I will, when I’ve had my transplant. If the squeaky wheel gets the grease, but the meek inherit the earth, what providence is there for those of us waiting on endless lists, for stem cells, for organs, for life? At least I don’t have to hope for someone to die.

  I get to go home right on schedule May 30, exactly thirty days after I was admitted. But there is one last painful procedure before I can leave, a second bone marrow biopsy, to determine how successful the induction chemo was at killing the cancer cells. It’s the “You’ll dance at your children’s wedding” doctor who does it; he’s so kind, apologizing for having to go deep into my hip because my bone marrow is “dry” from all the chemo, calling me “love,” and asking about Jack and Anna, that he distracts me from the pain. I even manage to ask if he has children. He doesn’t, and he adds that he is single, which my brain files away for later.

  Then, at last, I’m free to go. I’m clutching my last few belongings in my lap, my pillow and a vaseful of flowers. And Simon starts wheeling me out of the room, when the new patient, who has jus
t moved into the bed next to mine, happens to wake up and I make eye contact with her for the first time. Because I’m in a good mood, I actually stop, say hello, and ask her how she is.

  She looks at me dreamily and says, “I’m dying.”

  And I think to myself, Goddammit, this is exactly why you should never try to start a conversation in a cancer ward. But now I have to pause and think of some response.

  I say gently, “You look very peaceful.”

  She nods and says, “I’m going to God.”

  I say, “I’m glad.”

  Then she closes her eyes. I’m not sure if she’s asleep, but I think it would be rude to sneak off, so I say quietly, “Well, I’m going home now.”

  She opens her eyes and says, “I hope you get better before the Rapture.”

  I say, “Thank you.”

  And then Simon and I get the hell out of Cancer Ward 2.

  Chapter Nine

  Making pancakes on the weekend has always been my job. But my first morning at home, Simon makes the pancakes for breakfast. Not only that, but Jack and Anna both pour their maple syrup themselves, even though I’m sitting right there at the table with them. They’re in grade 6 and, of course, capable of pouring their own syrup. But the point is, I always did it for them. Anna, in particular, used to make quite the production out of it. She would not even let Simon pour her syrup; it had to be me, because only I could do it exactly right. I’ve only been gone for a month and everyone has moved on without me.

  I’m desperate to be useful, like I used to be. In the hospital I had decided that as soon as I got home, I would buy a gift for the sick child of a friend, whose illness I had heard about while I was at Sunnybrook. Before, I would have felt momentarily terrible but done nothing except enquire periodically about how she was doing. But now, after experiencing the lift of Peter’s thirty gifts, I feel I must give her something, but what?