Love and Laughter in the Time of Chemotherapy

by Manjusha Pawagi

  Homer happens to drop by as we make it to my room. I stay in the wheelchair, Homer sits on the edge of my bed. He congratulates me on my latest biopsy results. He saw from my chart that the second induction chemo worked and the number of leukemic cells in my bone marrow is down to less than 2 percent—which counts as remission.

  I don’t say anything in response, because I’ve already taken my results for granted. So the brutal second induction chemo worked and, added bonus, it didn’t kill me. Time for a victory lap, but I refuse to do one in a wheelchair.

  “That’s great you went out,” he goes on. “How are you doing?”

  “I want to go home,” I tell him. Simon has his back to us, putting his Sudoku book and newspaper into his knapsack as he gets ready to leave.

  “Are there stairs leading up to your house?” Homer asks.

  “Yes,” I sigh.

  “How many?”

  “Maybe half a dozen, cement steps.” I try to picture them in my mind.

  “Could a ramp be put in?”

  “It would be pretty steep,” I say doubtfully. Talking about ramps makes it all seem more real than I’m prepared to believe. How long exactly does he expect that I will be in a wheelchair? He makes it sound like it may be months. And there’s more.

  “Look, even with a ramp, you can’t go home until you can at least get from your bed to the wheelchair by yourself,” he tells me. “Because you don’t have a winch at home and Simon won’t be able to lift you.”

  Simon has turned around now and doesn’t say anything, but I can tell he is alarmed at the very prospect. I see the panic in his eyes. I feel huge, unyielding, a sack of cement. Doesn’t he want me at home? Who wouldn’t want me at home? I feel that paranoia again. Is Simon trying to keep me in the hospital? Shouldn’t he be just as desperate to have me at home? I want to be at home right now. Simon and Homer both say it would be better to go to a rehab hospital first to get mobile again. I can’t bear the thought.

  “It would only be for a few weeks,” Homer says. But “few weeks” and “only” do not go together. It seems like a picture of eternity. I can’t go to another institution. Doesn’t anyone understand how unbearable this is? It has been almost three months in hospital already. I want to go home.

  But everyone, except for me, is in agreement, and so the rehab hospital it is. Now the problem is being well enough to go there. They won’t take me unless I have been fever-free for forty-eight hours, because fever means infection and they’re not equipped to provide medical treatment, only physiotherapy. It takes another week to meet that test. Finally, one Friday, an ambulance is booked to take me to St. John’s Rehab. For some reason, the transfer cannot happen until after 8 p.m., which is not a great time for me; usually I’m ready to go to sleep for the night by then. Instead, there is the bustle to prepare me.

  Simon packs up my belongings: clothes, shoes, coat, laptop, iPod, books, snacks, pillows; I have amassed a surprising amount of clutter. A nurse unhooks my IV lines and caps them. Two orderlies come in with a stretcher and heave me onto it to take me to the ambulance, where they strap me in a bit too tightly. It’s still light outside and it feels strange to be driving through the city on a summer evening. I’m feeling motion sickness from lying down and feeling the swerving and the stopping and starting at each red light. Simon is following in our car.

  The ward room is two or three times the size of my Sunnybrook room. Its four beds are spaced well apart, so there’s enough room for everyone’s mobility devices—canes and walkers and wheelchairs. I’m assigned a bed by the far window. It is now almost 10 p.m. I have not had dinner. The nurse says she will try to find me something, but I don’t want anything. It is all too much. She returns, carrying a small tray of food in one hand, and wheeling the vital signs monitoring station with the other. She takes my temperature.

  “You have a fever,” she says, frowning, “38.2.”

  “I think it’s just from the stress, the ambulance, and moving, and everything,” I struggle to convince her. “Could you try again in half an hour? I’ll probably be fine by then…”

  “No,” she says. “I’m sorry, but I have to call the ambulance.” Before I can even believe this is happening, I’m back on the road, this time in the dark.

  We get to the Sunnybrook emerg at around 11 p.m. It has to be the emerg because I’d been discharged, so I no longer have my bed on the ward. I wait there for an hour, strapped tightly to the ambulance stretcher. I ask the medic to loosen the straps a bit. A man waiting near me has incredible body odor. I feel like I’m going to throw up. I ask to be moved closer to the entrance so I can get some fresh air. A doctor finally admits me, and I’m taken back up to the cancer ward.

  The doctor, a stressed, yet kind, young woman, gets into an argument with a nurse right at my bedside. It turns out what I thought was a long time was actually a short time; the doctor had skipped some bureaucratic steps to get me back into the cancer ward relatively quickly, and the nurse is not pleased about it. The doctor is frustrated and explains to the nurse as patiently as she can that she didn’t want to leave me hanging around emerg any longer.

  “Fine, write it up,” she finally tells the nurse in exasperation. She puts in a requisition for a few scans to check the source of the infection. They’re scheduled for midnight that night and end up being inconclusive. It’s not clear what kind of infection I have, or if I have one at all. I no longer have a fever. But now it’s Saturday, and nothing can be done until the weekend is over. And because it’s the weekend, no doctors or physiotherapists come by.

  I’m not very good at waiting. When I’m waiting for something, I cannot do, or think, of anything else. All day Saturday and Sunday I just wait; I don’t pick up any of my books; I don’t watch the next episode of Downton Abbey; I don’t chat on the phone; I just wait, as tightly wound as the clock I’m staring at. Hang on, maybe this means I’m actually very good at waiting?

  My family would disagree. I used to drive everyone crazy when we went for dim sum at one of those cavernous places where women push around carts of steaming bamboo baskets. Simon, Jack, and Anna would sit patiently waiting for the carts to come by our table, chatting and playing the “what’s missing?” game where Simon removes something from the tabletop, and Jack and Anna have to guess what it is.

  “Close your eyes, close your eyes, close your eyes,” he would intone, while whisking away, say, Jack’s chopstick holder, and hiding it in his lap. Jack and Anna would sit with their eyes scrunched tight, trying their best not to peek. Meanwhile, I was too distracted to participate. I’d be bobbing up from my chair, squinting across the room, trying to see what was coming.

  “Mummy’s water glass?”

  “Nope.”

  “Anna’s napkin?”

  “Nope.”

  “The bottle of—”

  “The har gow and sui mai cart is heading this way!” I’d interject excitedly, “Here it comes, here it comes…. Ohhh, wait. No, it turned, I can’t believe it!” When I finally couldn’t take it anymore, I’d leap up, run down the aisle with our little form to be stamped, and retrieve the dumplings myself.

  On Monday morning the ambulance takes me to the rehab hospital again. This time I don’t have a fever, and I’m allowed to stay. I don’t manage to score a bed by the window; instead, I’m assigned the one by the door. I also don’t get diapers because they’ve decided I need to work on using the bathroom. They start by trying to teach me to get in and out of bed by myself. To get out, I first have to find the control pad on the side of my bed (sometimes obscured by the mattress and sheets and blankets), and press the button that lowers the whole bed closer to the floor. Then I have to press the button that tilts the bed to put me in an upright sitting position. If the bed rail is up, I can’t see the control pad and have to do it by touch. The bed contorts wildly before I get it right.

  Once I have managed to both l
ower and tilt the bed, I have to cling to the rail and sit unsupported, and swing my legs over the side. I have to use my hands to grab my pajamas and yank my legs over the side, as they don’t move easily on their own. Finally, I have to feel with my feet for my slippers, which often have been kicked under the bed by the nurses’ comings and goings. If I can’t reach them, I give up, and go barefoot.

  It’s at this point that I have to have a nurse help me into the wheelchair. I can get the wheelchair to the bathroom by myself, but the door is too heavy for me to slide shut, so the nurse has to do that. If I don’t have a nurse, I leave it open—I have no modesty anymore. A nurse has to help me onto the toilet. Then she goes away to do something else. I wish she would stay with me because I’m done in a minute, but she has many other things she needs to do. So I have to press the buzzer in the bathroom and wait for a nurse to return to help me back into the wheelchair and then back into bed. Eventually, I can manage in the bathroom by myself, but I still need help getting into bed. One evening, I wait forty-five minutes in my wheelchair, watching the light fade from the large windows at the end of the room, until a nurse has time to help me back into bed.

  Once in bed, it’s very difficult to settle into a comfortable position, because I can’t move very well. So a nurse teaches me how to use the T-bar that is dangling over my bed. I have to grab it with both hands and use it to inch my whole body up higher on the bed so I’m in the right position. The first time I do it, I pull all the muscles around my abdomen and for the next month it feels like there is a tight band wrapped around my torso, squeezing me, not painfully, but uncomfortably. It takes so long to dissipate, and leaves so gradually, that I don’t even register when it’s finally gone.

  While I’m game to go through all the steps to use the toilet to pee, I’m resistant when it comes to changing my ileostomy bag. Since the surgery a month ago, the nurses at Sunnybrook have always changed it. But here they want me to learn how to deal with it myself. It’s hard because I’ve been in such denial about it that the first time it leaks, I panic and call for a nurse, thinking some vital fluid is trickling out of me. The nurse actually laughs, because I’m being so silly about the equivalent of a poopy diaper. I eventually meet them halfway and learn how to empty it myself, which has to be done every couple of hours. But every week, the bag itself has to be peeled off me and a new one stuck on. This I cannot do. I cannot even watch while they do it, cleaning and measuring my stoma, cutting a hole in the flange to fit it, clicking the bag into place once the flange is stuck on. I avert my eyes or shut them altogether. I can’t bear thinking about the two ends of my intestine poking out, never mind looking at them, and really never mind touching them.

  To the nurses, though, it’s no big deal. One comments on what a perfect job my surgeon did.

  “Stoma perfect,” she pronounces, “like rose. Like right from textbook.”

  She even brings over a nurse-in-training to take a look at how perfect it is. When I ask why the bag fills so quickly, she explains, “Stoma working, working, working.” She snaps her fingers to indicate just how efficiently it is working. “Not like bowel, waiting for socially acceptable time, this needs to be emptied every hour or two, all day, even night.”

  I can’t face it, and yet it’s hard to think of anything else. It’s hard to take any pleasure in eating, when you can see so clearly and immediately what all you have eaten turns into.

  In the Little House on the Prairie books, which I continue to reread to this day, Laura Ingalls Wilder describes all aspects of pioneer life in painstaking—and, frankly, often tedious—detail. There is a whole chapter on Pa building a door for the stable, for example, or an addition to their claim shanty. All aspects that is, except for a critical one. There is never any mention of Pa building an outhouse, not in the Big Woods, not on Plum Creek, and not by Silver Lake. I used to wonder how they managed when the girls were babies, for instance, or when they were confined to their house for the whole of that Hard Winter.

  When Ramona, in another of my favorite series, asks her kindergarten teacher how Mike Mulligan managed to go to the bathroom when he couldn’t leave his steam shovel all day, the teacher answers by saying it’s not mentioned because it’s not important. The class is skeptical; of course going to the bathroom is important, and the teacher knows it. Why else was the location of the bathroom the first thing she showed them on their first day of school?

  In the hospital, certainly, it’s all anyone seems to talk about. Especially during mealtimes. My lifting the cover off my dinner plate is the cue for the nurse to question my neighbor in minute detail about the frequency and quality of her bowel movements. The elderly woman in the bed opposite me refuses to use her buzzer to call the nurse. Instead, she yells out “Pee!” when she has to go to the bathroom, which is a dozen times during the day and through the night. Her daughter, a beautiful, stylishly dressed twenty-something-year-old, explains, over and over again, as does the one nurse who can speak Cantonese, “Press the button and a nurse will help you get to the bathroom!”

  Five minutes later I hear the familiar yell, “Pee! Pee!”

  Chapter Sixteen

  The woman who has the bed next to me is very friendly, gushingly so, at first. “You’re so beautiful!” she says one morning, as her mother pushes her wheelchair past where I am sitting in the chair by my bed. “Your skin just glows!” She even praises my cheekbones, which I guess are thrown into relief by my bald head.

  Then her mother pipes in, clearly also wanting to compliment me somehow, “And your son is so tall!”

  They have not yet seen Jack. They are referring to Simon, who is six foot three. At least their flattery makes sense now. For someone who has a forty-six-year-old son, I do look pretty good.

  Her friendliness ends abruptly when I ask her to turn off her overhead light one night. It’s almost 10 o’clock. I’ve been fretting since 8:30 about when would be a reasonable time to bring up the issue of the light. A nurse carefully doles out one sleeping pill to me each night. It takes about thirty minutes to take effect. If I take it while the light is still shining brightly it won’t work, and it will be wasted because I’ve found if I don’t fall asleep in that first half hour, the night is shot. I’m tossing and turning, figuratively that is, as I can move only with great difficulty. I sleep on my back, in almost a sitting position. I long for the time I can lie flat, curled cozily on my side, one hand tucked under my pillow. It’s now 9:45. We each have control over an overhead light and a reading light. Because the curtains separating us don’t reach the ceiling, when one overhead light is on it’s pretty much as bright as if all of them were on.

  I rehearse the words in my mind: Would you mind turning off your overhead light, I’d like to go to sleep? Sorry to be a pain (insert friendly self-deprecatory laugh here) but could you turn off that light? Do you think…The nurse arrives with my sleeping pill. I take the easy way out, scrunch up my face in a pained expression, point to the light, and whisper to the nurse, “Could you ask…” The nurse immediately goes over to the next bed.

  “Time to turn the light off, other patients need to sleep.”

  “But I’m reading,” the woman protests. “I can’t go to sleep this early.”

  The nurse is curt. “Use your reading light.”

  “It’s not strong enough, my eyes…” The nurse just stands there. “I can’t read by it…” Her protests dwindle. “…not one word.” Finally she repeatedly yanks the pull cord and the light clicks, first brighter, then brighter still, then finally off. But I’m tense now, imagining that compliments from her are no longer going to be flowing my way, and I don’t fall asleep for hours.

  The food is worse than at the hospital. I’m actually nostalgic for Sunnybrook’s tortellini and grilled cheese, which now seem like the height of culinary perfection. Here the bread at breakfast is like a piece of wood. I think it was toasted outside the city somewhere and then trucked in. I
crumble two or three bites off the crust and eat it with the shrink-wrapped orange cheese.

  Simon brings sandwiches for lunch as usual. The grounds are lush and extensive. The nuns (whose place this was before it became a rehab hospital) were good gardeners. We go to the place where the flowerbeds and benches are arranged around a large stone fountain. We watch several chipmunks chase one another around the edges, sometimes balancing precariously on the slippery gray brink for a drink. They manage not to fall in, though it’s close. Simon always brings nuts. He gets to the point where a chipmunk will climb up his leg to perch on his knee for a snack.

  I never used to want to be anyone other than myself, and now I constantly look at people and wish I were them. I see a young man in the reception area one day, in a well-fitting dress shirt, holding a briefcase. He immediately leaps up to give me his seat when he sees me approaching with my walker, but I thank him and wave him off, and as I pass I have an intense longing to be him, which I have never felt before. I imagine he is there for a job interview. I’ve thought about him a lot since. I wish I were a young, handsome man, just finishing school, eagerly attending job interviews.

  I think that whenever I see anyone who looks young and healthy, especially if they have nice hair. Frankly, I think that even when I see the chipmunks. I’d even rather be a rodent, I muse, if I could be a healthy one.

  Simon and I go to a seminar in the ward’s common room about how to stay safe at home. The presenter goes over slide after slide, all about the dangers of falling down. Falling, apparently, is the first step to a slow, excruciating death and must be protected against at all costs. Get dressed sitting down. Iron sitting down. Wash dishes sitting down. Be careful not to trip over the vacuum cleaner cord. “I never realized all these things were so dangerous!” I whisper to Simon.

  “You don’t have to worry,” he reassures me.