Love and Laughter in the Time of Chemotherapy Page 14

  It turns out that a few rooms down from me is the sister of someone I know. After my transplant, I knock at her door, dragging my IV stand behind me, to introduce myself and say hello. She is sitting up in bed with her laptop. A case of plastic water bottles is on the floor by her bed, the cellophane wrapping ripped open. A couple of the bottles are on her bedside tray and one is in her hands as we speak.

  “I’m so thirsty!” she tells me. “That’s good,” I say enviously, “they keep telling me to drink, and I’m not thirsty at all.” I’m constantly being lectured about how I have to show I can drink at least 2.5 liters of water a day before I can be released, because otherwise dehydration will land me right back in the hospital. I tell her I just had my transplant.

  “What was it like?” she asks.

  “It was just like getting anything through the IV, like a blood transfusion. It was just one bag, it just took a few hours, and I didn’t feel anything.”

  It seems like it should be a bigger deal, that I should have a more dramatic story to tell. She seems simultaneously relieved and disbelieving that it was such a non-event. Much later, I mention to a friend in passing, “I wonder how she’s doing? You know, she had her transplant the week right after me. Her room was two down from mine, isn’t that a coincidence?”

  There is a beat of silence and then a hushed “Didn’t you hear? She died. A few months ago, I think.” I am shocked and saddened. I later learn she was readmitted to hospital one week after her discharge, with acute graft-versus-host disease. The stem cells attacked all her organs, and she died a month later.

  I didn’t know then that the seemingly simple transplant would knock me out. Or, more accurately, I didn’t pay attention to their dire list of potential side effects: skin rashes, mouth sores, nausea, and feeling like you have knives in your throat. Because what is the point of paying too close attention to risks you have to take? I was scared and just hoped I wouldn’t get everything so badly. But I do. For a full two weeks after I receive the stem cell infusion, I cannot put anything in my mouth. I do not eat one bite of food, take one sip of water, or brush my teeth. I throw up into a blue plastic basin that I clutch at all times. I get my liquids, nutrients, morphine, and anti-nausea medication by IV drip. It is a huge effort to get out of bed and take the required four showers a day. I sometimes skip one, or even two.

  My fingernails and toenails all turn black. I’m down to ninety pounds. My mother is anxious. I don’t want any of her food anymore. I don’t want to talk. I don’t want to do anything. She fidgets by my bedside, rearranging things unnecessarily. I don’t even have the energy to be irritated, as she moves my Styrofoam cup an inch closer to me.

  She’s used to leaping to my defense, even when I would rather she didn’t. We were walking home from the bus stop one evening when I was eight years old, when a little boy ran by us and yelled “Paki!” at me. My mother was furious. I begged her not to do anything, but she told me to go on home and she marched after that boy right to his doorstep where she gave his mother a lecture on civility. When my brother graduated from university and was living on his own in an apartment in Waterloo, she called him one evening and heard him groaning, “I…can’t…come…to…the…phone… please…leave…a….” followed by a beep. Not realizing it was his answering machine (even when she called right back and got the same message), she called her friend, whose son, Milind, also lived in Waterloo, and then she called 911. When Harish came home that evening, he first saw Milind in his lobby—“Boy are you in trouble! Call your mom!”—and then he saw the firefighters in his apartment. But she is helpless now, and it is killing her. Her baby is in trouble, and there are no bullies to berate, no firefighters to call. She can’t even comfort me with food. There is nothing she can do.

  Chapter Twenty-One

  I wake one morning to see a nurse sitting in the chair by my bed. She has cartoon kittens chasing each other all over her capacious nursing smock. I look carefully to see how many different colors they come in before the pattern repeats.

  “I’ve been here all night,” she tells me, “because you’re not supposed to be walking around the ward and you went to the nurses’ station at midnight.” I look away from the kittens and frown with concentration, but I don’t remember doing that.

  “You were perfectly polite,” she reassures me, even though it hasn’t occurred to me that I would be otherwise, even in a delusional state.

  “You asked if it was morning, because you needed to make eggs for Jack and Anna. I brought you back to your room and you came with me no problem. But I had to stay to watch that you didn’t get up again.”

  A social worker comes by and gives me a pamphlet for teens dealing with a parent who has cancer. I give it to Simon, but I think it is too much for Jack and Anna because it mentions things like “Many people with cancer survive,” and somehow I don’t think it’s in their minds that I might not survive, and I don’t want to put it there. Even though, of course, it’s all that’s on my mind.

  I chat with a student nurse about outcomes one afternoon, when she’s changing my sheets, and she says a stem cell transplant gives you ten years on average. All I can think about is that ten years only takes me to fifty-seven (twenty years younger than my dad is right now, and he seems young and healthy to me, still driving us places, still fixing things at home and at their cottage).

  “That is ridiculous,” says Kate firmly, when she calls from Ottawa to check in on me, and I tell her anxiously about the ten-year average. “That’s not true at all. The outcomes are so much better than that. She doesn’t know what she’s talking about. She shouldn’t have even been discussing this with you!”

  A spiritual advisor drops by frequently as well. I was suspicious that the visit would be religious, but it isn’t at all; it isn’t even especially spiritual. She is just a very kind woman with whom I can chat about my worries.

  When I’m able to resume my laps around the ward, towing my IV pole, I stop to read the little copper plates screwed into the frames of the paintings that line the walls. This is a mistake. I had been admiring particular pictures as I kept passing them in my endless circles, but it is only now I discover that my two favorite pictures are donations from the families of patients who did not make it. That this could be so had not occurred to me.

  I’d been thinking of what painting I would donate, but I certainly won’t be doing it if I don’t make it. I don’t think I could be that grateful. One of my favorites is a restful painting of a stream through a wood, donated by the wife of a man who died at age forty-four. The other is a sketch of the Tasmanian devil (from the Roadrunner cartoons), by a patient who died at age eighteen. The sketch is bold and detailed, but what really moves me is that it is framed in little stickers, which seems more a thing a child would do, rather than a young man.

  I wake up with the worst sore mouth I have ever experienced. It’s impossible to swallow, and all I do is sleep away the long morning into the afternoon. By then the doctor adjusts my medications, adding an IV steroid and increasing my morphine, so I’m able to talk and swallow without pain and can even welcome the music therapist who comes by every other day. She usually speaks softly to me about how I’m doing, and plays vaguely recognizable, soothing melodies on her keyboard (like Minuet in G). But today she’s bustling with extra energy.

  “You know what we should do?” she asks, and then answers before I can respond, “We should write a song together.”

  “Oh, I can’t do that,” I tell her. “I used to play the piano, but I’ve forgotten everything. Plus, I’m pretty sure I’m tone deaf.”

  “I’ll write the music,” she says. “You tell me what you want it to be like. Maybe it can be for your kids.” I perk up at that.

  “Can it be a song that they can play?” I ask. “Maybe that we can all play together? We did that last year, with Christmas carols. I played the piano. Jack played the guitar. And Anna played the vio
lin. Simon played the triangle. Could we have different parts like that?”

  “Yes!” She is enthusiastic. “What kind of melody?”

  “Like a folk song,” I tell her with, “with a kind of waltzing beat.”

  “How about if we switch the instruments around so it can be for cello or guitar?” she asks. I had told her that Jack plays both, so I like that idea a lot. She tries out a couple of melodies for me to approve, and even though she describes this as us writing a song “together,” really, my only contribution is to think of a title. I want it to be beautiful and meaningful, and so settle on a phrase from my favorite e.e. cummings’s poem, “I carry your heart.”

  I immediately have second thoughts, because even though it’s a beautiful poem, the line sounds nothing like a title. You can’t imagine anyone ever saying, “Hey, can you play ‘I carry your heart’ one more time?” Oh well. She returns a few days later with all the parts written out. I’m thinking maybe we could play it for my parents’ wedding anniversary party, which was supposed to be this December but is now postponed along with all our trips.

  The music therapist and the doctor are playing for the opening of the glass garden in the hospital courtyard on Monday at 2 p.m. I have asked if I can go, but it depends on my blood counts. Right now I’m restricted to the ward until the risk of infection passes because my white blood cell counts are low. The flowers in the garden look like the ones from Disney’s Alice in Wonderland. You expect them to break out in song any minute. They are large blown-glass flowers, in blocks of red, yellow, purple, and pink. They’re bright and childlike, and they give me a lift every time I see them. I can look at them for half an hour as if they were a TV show. Time moves in different ways now. The years are flying by (death is imminent as opposed to being hidden in a future haze), but an hour can shimmer like something solid you can touch, like an oversized glass flower.

  I remember some author describing how he feels he overuses the word “just,” so when he finishes writing, he goes back and takes out all the “justs.” It makes me aware that I overuse the word “actually.” I think it’s because I live so completely in an imagined world, I feel the need to distinguish the times when I am forced to acknowledge that something is “actually” happening. Sometimes my imagined life as it should be coincides with life as it is, but I notice even the slightest deviation when it doesn’t.

  Let go of the life you planned, wisely counsels so-and-so, and live the one that’s waiting for you. But how can I let go of the life I planned, when it is a film unspooling in my head in constant counterpoint to my dreary reality? It was hardest at the beginning. I would lie in my hospital bed and think, Now we should be at Laura’s house playing the board game Apples to Apples. Now Simon and I should be watching Angels in America in the Distillery District. Now we should all be in London watching the stage production of The Curious Incident of the Dog in the Night-Time. Now we should be in Amsterdam lining up outside Anne Frank’s secret annex. Now we should be bicycling past fields of gladioli on our way to the Dutch coast. I see them swaying in the salty summer breeze even as I am staring at the static glass flowers in the hospital courtyard, which now seem weirdly purple and red under gray Toronto skies.

  A chart is taped to my bathroom door. I’m supposed to write down exactly how much I drink each day, and exactly how much I expel. The drinking part is not too difficult. The little juice cups that come with my meals list exactly how many milliliters they contain. The Styrofoam cups of water each hold half a liter. Yogurt, ice cream, and Popsicles all count. I round up generously, because I’m trying desperately to get to my 2.5-liter goal. I even count the swallows of water I take with each pill.

  The expelling part is harder. There is a white plastic container with measurements marked on it that fits over the toilet—I’m supposed to pee into it first before dumping it into the toilet so I can keep track. I do it even though it’s a pain, especially in the night when I’m half asleep, to stumble from the bathroom to my night table for a pen, and then back to the bathroom door without getting tangled up in the cords of my IV pole.

  What I refuse to do, however, is measure the output from my ileostomy bag. It’s simply too gross. I don’t want to even look at it, much less measure it, dump it out, and then clean the container. There are limits, and I’ve reached mine. What I do is try to estimate an amount and write it down every time I empty the bag. It’s random, but the nurses end up complimenting me.

  “I don’t think I’ve ever seen where the input and output is exactly the same!” one of them exclaims. I grimace, guilty but unrepentant. I never make my 2.5-liter-a-day goal, but I’m discharged according to schedule anyway, because of my fervent promises to meet the goal when I get home.

  I’m lying, of course.

  Chapter Twenty-Two

  “You had the perfect excuse to get out of it.” Homer can’t believe I’m planning to go to Anna’s winter concert. “You just had a stem cell transplant!”

  I’ve been home for seven days. I’m weaker than I ever remember being. The first time Simon hands me a glass of water, I almost drop it. I am so unprepared for the weight of the smooth, clear tumbler, after all those Styrofoam cups at the hospital. I don’t have the strength to turn on my iPod or to clip my fingernails. One doctor advises against going to the concert because it’s winter and flu season; people will be sick. Another doctor says it will be okay, tells me to wear a mask, and try to stay back from the crowd, and adds, “You can’t not live your life.”

  I always keep asking until I get the answer I want.

  It’s my first venture out in months. It’s snowing. I bundle up in sweatpants and a fleece jacket under my winter coat. I have my cancer scarf wrapped around my still-bald head and a face mask pinched over my nose and mouth. I shuffle slowly down the church aisle, gripping Simon’s hand tightly. It is either too hot or too cold, depending on where we are in the church.

  It’s crowded and bright, and noisy and animated. Parents are greeting each other loudly over the bustle; blocking the aisles with their chatting, hugging, and catching up. Occasionally a chorister scurries by in a black tunic, white shirt, and red bow, long hair carefully tied back. Everyone looks so beautiful: small children in puffy coats; women in lipstick, sparkly blouses, and elegantly tapered pants. I forgot how pretty people can be. We see a friend, but she mimes having a bad cold, and hurries past us without stopping, fearful of infecting me.

  We slide into a pew in the middle of the church and are settling in when Simon notices a rear balcony that seems unoccupied. We find the stairs and make our way up, to find only a half dozen people there, including a photographer. We edge by his tripod and sit in the front row of the balcony. The church is long and narrow and we are far from the choir, but I can see Anna as long as I perch on the edge of my seat so the wooden railing doesn’t block my view of the front row where Anna is stationed. It’s a good thing we moved up here, because two girls throw up on stage, at two different times, right in the middle of the concert, necessitating long interruptions of mopping and toweling.

  I end up in Sunnybrook emerg a few nights later, with an infection. They put me in a special waiting room this time because I have no immune system, and then send me home with antibiotics. Next, I get a painful rash on my neck and arms, and start on steroids. It’s too much. Simon and I buy lunch at Druxy’s in the lobby of the hospital while we wait to pick up this latest prescription. I start crying into my grilled cheese and barbecue chips.

  “What’s the matter?” Simon asks gently, handing me a napkin.

  “What do you mean, what’s the matter? I have graft-versus-host disease!” I sniffle.

  “They were expecting this,” he reminds me. “It’s a good sign. It means the stem cells are working.” All I can think is, We’ve come for so many appointments, surrounded by so many patients, and I’m the only one who ever seems to be crying.

  The steroids do clear up the
rash instantly, but they also give me that steroid moon face, like it wasn’t already hard enough to look in the mirror. The tiny steroid pills are on top of the twenty or so pills a day I’m already taking—to suppress my new immune system, to ward off infections, to build up my body’s depleted vitamins and minerals, to combat nausea, to relieve pain. Some of the medications serve to combat the side effects of the other medications. I even have a pill that makes it easier to swallow the other pills.

  There are also IV infusions I must get for months. A home care nurse comes by to hook me up to bags of magnesium, saline, and anti-fungal medication, for five hours every day. For a few weeks, the doctors add an extra infusion of an anti-viral medication; this one in a portable IV pump, in a bag I have to carry with me, at all times. I keep forgetting I have it, and get up from the table or sofa or bed, only to have it tug me back, like a hand yanking me by the neck of my sweatshirt.

  I have to go to the hospital twice a week (every Monday and Thursday morning) for blood work, so the doctors can review counts of this, and levels of that. They make changes to my medications, at almost every visit. It is a finely calibrated balancing act: adding and subtracting drugs, increasing and reducing dosages. The appointments start at 8 a.m. and usually end at noon. But one day, the clinic is especially crowded, and I have to wait into the afternoon.

  It’s another world. The morning people look shaky and skinny. Many are still bald and attached to IV pumps like mine. The afternoon people are the mythical people I had been told about. They would look ordinary to anyone else, but that is exactly what makes them unicorns to me. They have survived their stem cell transplants. I overhear one woman (thick curly hair! bright pink shoes!) mention that she is eleven years post-transplant. I desperately want that to be me, and even more desperately fear it never will be.