Love and Laughter in the Time of Chemotherapy Read online

  The most disconcertingly named regular visitors are members of the “pain and palliative care team.” I think they’re doctors, but I’m not sure. Their job is to monitor my level of pain and my dosages of pain medication. The first time they visit, I’m so alarmed by their name I ask about it, because it makes it seem like I’m dying if I need “palliative care.” One of the team members explains that to “palliate” just means to “alleviate” pain, so it is an entirely appropriate name. It’s as if she’s on a mission to rehabilitate the term. I’m not convinced, and much later, at home, I look up the word in my Canadian Oxford Dictionary. It defines “palliative” as “anything used to alleviate pain, anxiety, etc. especially without eliminating its source.” However, it defines “palliative care” as “medical care provided for the terminally ill, aimed at relieving symptoms.” So I consider that I’m right after all. And they really do need to change their name.

  I’m full of other helpful suggestions as well. When a surgical resident installs my Hickman line—a thin, flexible tube he inserts into the large vein above my heart for delivering chemotherapy and blood products, and for taking blood for tests—I’m upset, because he doesn’t speak to me at all. Not one word. I don’t know what he’s doing, and I don’t even know when he’s finished until he abruptly leaves the room. He has the accent of a villain in a James Bond movie. I complain about it to my medical team (not the accent, but the fact he didn’t say anything to me) and they listen sympathetically.

  “Even though it didn’t hurt, it was worse than that thing that did hurt…” I pause, trying to remember the name of that earlier procedure. “The bone marrow biopsy!”

  The biopsy was one of the first things they did, inserting a long needle deep into my hip to extract liquid from my bone marrow to see what percentage of the sample was cancer cells. A resident did it, under supervision of my doctor. Or rather, she tried to do it. After two attempts, the doctor took over. It was the first time I heard the dreaded phrase “You may feel a little pressure.” It hurt, a lot, but the doctor was so kind and supportive, complimenting us both on what a great job we were doing, that I came out of it feeling good, even though the resident’s part was unsuccessful and my part consisted of trying to keep my moaning to a minimum.

  My medical team listens attentively. They think this is a good example of how bedside manner is as important as technical proficiency. And I feel proud to think that my experience matters, like I’ve contributed something to the issue of patient care.

  There is one pain doctor I adore, because he explains things so well. I’m very surprised to hear from him that they have the ability to manage pain so well that no medical procedure should be painful (more for that hemorrhoid clinic to answer for!). He also says you should not be a martyr and wait for the pain to be unbearable before seeking relief, because then you are always playing catch-up. You have to get on top of it and take the medication before the pain is at its worst, so that you can battle it before it gets out of control. Since I was never one with remotely martyr-like tendencies, this all makes perfect sense to me.

  I hit a snag, though, in my ability to control when I get the pills. When I feel the pain starting, I page the nurse, but it takes time for someone to answer the page, and then varying amounts of time for the paged nurse to get the pain pills. This is entirely understandable as I’m not the only patient, and I can see the nurses are run off their feet. So then I start to ask for the pills before I actually need them, my plan being to hoard them until I do need them. That way, I can wait for the exact right moment to take the pills, not too soon, not too late. For a while, that plan works. But then the night shift is taken over by a brisk young nurse I haven’t had before, pretty and pink-cheeked, in bright pink scrubs. But all that pinkness and youth is deceiving, to say the least. She is the toughest of all the nurses.

  The first time she hands me the pills in a tiny medicine cup, I thank her politely and place the cup carefully on my bedside tray for later. She narrows her eyes.

  “I have to see you take them.”

  “Why?” I stall.

  “Because they’re a narcotic and that’s the rule with narcotics. I’d get into serious trouble otherwise. I have to make a note of the time you ingest them.”

  She never comes right out and says so, but I infer that the issue is that a patient could stockpile the little pills and then commit suicide through overdose. And Simon thinks they’re also worried I might sell the pills, which I couldn’t really imagine happening from a hospital bed, but I guess others are more entrepreneurial than I am.

  “I can be trusted!” I tell her, laughing in what I hope is an entirely trustworthy and non-suicidal way.

  She doesn’t smile, but stands there waiting for me to swallow the pills, which I meekly do, after a brief mental struggle about which would be better—to take the pills when I don’t yet actually need them, or to admit I had wasted her time and called for them too early. I go with the former because I think getting a girl-who-cried-wolf reputation would hurt me more than taking unnecessary pills just this one time.

  I appeal to one of the doctors on my team the next time he does his rounds. “Can’t you write that on my chart? That they can give me the pills without watching me take them, and then I can take them when I need them?”

  “No,” he says, “those are the rules.

  “But,” he adds helpfully, “you could pretend to take them and then you’ll have them for later.”

  Unorthodox and surprising though his advice is, I do think about it seriously, but end up dismissing it. The pills are the powdery kind, not the smooth gel kind. If I put them in my mouth, they would start to dissolve immediately, so I couldn’t spit them out later once the nurse left. On the other hand, if I try to fake-take them, and drop them instead, I’m afraid I would lose the tiny white pills in my white sheets. Then I wouldn’t have them, but they would be marked as having been taken, which would mean I would have to wait the required three hours before my next allowed dose, which would be worse than taking them early. So, as much as I appreciate his trying to help me, I do nothing except fume at the nurse.

  Then comes the night I think I’m dying. It is not a dream or hallucination. It is much too real for that. It feels like it’s happening. I’m rushing through the universe at a terrifying rate. I have never before felt the sensation of traveling so fast, faster than the screaming downturn of any roller coaster, so fast that the points of light of the stars surrounding me are blurring into blazing multicolored streams and I have no control over the force and the terror and the speed. I am sure this is it, and it is all too fast to even take a breath or cry out or feel anything other than fear at the heart-stopping speed. Then I open my eyes and I am in bed, gasping and sobbing.

  She’s there. Her pink scrubs glow even in the darkness. She puts her arms around my shoulders and says, “You are not alone.”

  Chapter Four

  Make the beeping stop, I want to wail and tear out the little hair I have left. But it never stops. When air bubbles are trapped in my Hickman line, my IV pump starts a pattern—beep beep BEEP beep—that it repeats over and over. It happens a dozen times a day and is multiplied by all the patients, in all the rooms, in all the ward. If ignored, the beeps get louder and louder and LOUDER. And the pump’s beeping is often ignored because, apparently, its needs are not as urgent as its jangling cry suggests.

  I press my call button. “…help you?” crackles the voice on the intercom high on the wall above my bed.

  “My IV is beeping,” I call out.

  “What?” She can’t hear me above the beeping.

  My mother leaps up. “Her IV! It’s beeping!”

  The intercom switches off. Then I hear the page, “Nurse to room 43C, nurse to room 43C.” A nurse eventually whizzes in and turns off the alarm by pressing a button. She scrutinizes the lines, flicks at the air bubbles several times, then restarts the pump. Sec
onds after she leaves, it starts beeping again.

  Sometimes, in my chemo-induced fog, I cannot tell if it is my pump, or my roommate’s. I try to listen as closely as I can. I reach out shakily, trying to turn the stand to face me so I can see if the lights are also flashing, which will let me know if it is my pump. Often it’s my roommate’s, but she’s sleeping through it. So I press the call button and try to explain it is the next bed, not my own. I feel it’s important to make this distinction in case someone, somewhere, is keeping track of who presses their call buttons the most, who are the most troublesome patients. I don’t want this call in my column. I worry when, despite my explanation through the intercom, it’s my nurse they send in instead of my neighbor’s nurse.

  “It’s actually her IV, not mine,” I say apologetically, pointing at the curtain. Drat, for sure this is going to go in my column now.

  I lucked out with my room assignment, even though it contains three patients, instead of the more typical two, because I am the farthest one from the door, so I have the most privacy and more windows. No one has to walk by me to get to the other patients. My narrow hospital bed touches the wall at my head. To my right is a curtain separating me from the middle bed. You can stand between my bed and the curtain, but you would be touching both if you did so. To my left is a window that runs the length of the wall, with a nice wide sill to put stuff on. But you have to be careful not to block the air vents as it is boiling hot on the ward. There is room for a chair between the windowsill and my bed. But in order to sit in the chair, you would have to climb over it first, as there is no room to walk by it.

  At the foot of my bed are two closets (even though only one is mine, I commandeer both to store my folding chairs), and another window that runs the length of the room. There’s a control pad on one side of my bed, and although it always takes me several contortions, often jackknifing me in the middle as both the head and foot of the bed rise up, I eventually manage to raise the bed as high as it will go. Almost every morning I have the same conversation.

  “Why is this bed so high?” The nurse will frown as she reaches to press the button that lowers it. “You could fall.”

  “No, don’t—” I put out my hand to stop her. “The view,” I say. “I want to see the trees.” It’s May and they are just starting to bud.

  An eighty-five-year-old old woman is in the worst bed, by the door; worst because she gets the noise and light from the hall and she is right beside the bathroom. She is the perfect roommate because she sleeps all day and has no visitors. She is not being treated for cancer. She is waiting for a nursing home spot to open up. It seems like a crazy waste of a precious cancer bed with its 24/7 top-notch medical and nursing care. She can walk, but refuses everybody’s attempts to get her up. She can use the bathroom, but chooses to go in diapers instead. (I hear the nurses complaining about that.) Except for one scare in the night when they thought she was having a stroke or something, it’s like there’s no one in that bed at all.

  In the middle bed is a woman in her sixties getting dialysis; she has replaced the woman who owns the Halloween store. She speaks only a little English, but she is always trying to chat with me or offer me help in some way. She has millions of family visitors and when they’re not there she speaks on her phone nonstop. But luckily she and her visitors all speak quietly, and in some musical language I don’t recognize, so it feels like a murmur of background noise to me. If it were an unending conversation I could actually follow, it would drive me mad.

  I don’t have the energy to talk on the phone or even watch Netflix. I just stare out the window at the trees, or at the flowers, sent by friends, that line my corner of the room. There’s a cluster of striped tulips on my left beside a curving white orchid. And there’s an elaborate arrangement on the windowsill at the foot of my bed: deep red roses, blushing lilies, each perfectly placed, down to the last leaf. But, one morning, I notice they look different. I’ve been gazing at them so long I can tell that the flowers are slightly askew. I’m confused at first, but then, through half-closed eyes, I catch my roommate shuffling over to refresh the water. She yanks them up, pours in some water she’s carried from the bathroom in a Styrofoam cup, and plunks them back in. I’m distressed.

  “Do you think it would be okay if I ask her, you know, nicely, and everything, not to touch them?” I fret to Simon.

  He doesn’t answer my question, and instead asks, “Did you notice what flowers she has?”

  “No.”

  “Take a look,” he advises me.

  Next time I go to the bathroom, I discreetly glance over at her bed. On her bedside table is a tiny vase with a single rose; it is artificial.

  I don’t say anything to her about my flowers.

  After I complete the week of chemo, I keep getting fevers. My mother works nonstop putting cold compresses on my head and legs to bring the fevers down. When she leaves for the night, I continue to do it myself. I struggle a bit and my neighbor hears me. She hurries over and starts wringing out the washcloths and places them on my legs herself. I weakly try to tell her to stop.

  “You’re being too kind,” I say. “You’re sick yourself. Don’t worry about me.”

  When she returns to her bed, I suddenly have a less grateful, more alarmed, thought. Wait a minute, she is sick herself! I’m not even having healthy people visit right now—I can’t be having sick people touch me! I panic and, instead of waiting to ask the doctor about it, I tell my mother when she arrives the next day. She immediately asks the nurse to tell that patient she should not be touching me.

  That evening, when my neighbor’s family arrives, they suddenly start conversing in an agitated manner rather than in their usual soft tones. So even though I cannot understand a word, I feel sure they are offended and are talking about me. I want desperately to apologize for giving offense and to explain that I was just worried because I have no immune system, but I don’t have the breath to do it.

  Luckily she is so sweet that she still acts the same toward me. And, as I gain strength, I chat more with her and worry less about her infecting me. One day she lends me a fashion magazine, which I leaf through out of politeness, even though I am not particularly interested, pleased with myself that I am now being a friendly roommate. Of course, five seconds after I return the magazine, her nurse whisks the curtains closed around her, puts up a hazard sign, and sets up a toilet by her bed. It turns out she’s being isolated because she has an infection, and I worry that I have put my life at risk, merely to be polite.

  In the meantime, the old woman at the far end finally gets her nursing home spot, only to be replaced by a woman in her late forties who radiates hostility like waves of heat you can actually feel. She complains about everything at the top of her voice: the noise in the room, the terrible nurses, the useless workmen who are renovating her home, her father who doesn’t visit.

  I’m terrified of her.

  “I’ve never even made eye contact with her,” I confide to Simon.

  “I did,” Simon reports. “I even said hello.”

  I’m impressed. “What did she say?”

  “She just scowled.”

  I try never to look at her when I get up to use the bathroom. My practice had been to almost close the door when leaving, but not to click it shut because the old woman was always sleeping and I thought the loud click would wake her. But when I do it this time, as I shuffle away from the bathroom, I hear hostile woman get up in a huff and ostentatiously click the door shut. The next time I use the bathroom, there is a little handwritten sign taped to it (in capital letters) saying, PLEASE SHUT THE BATHROOM DOOR COMPLETELY!

  She leaves, after about a week, on a day I am feeling well, so I am sitting in a chair instead of my bed and from that vantage point I can see my neighbor and her daughter, who is visiting. I point to the empty far bed and say, “I’m so glad she’s gone!”

  That unleashes a ferve
nt rush of agreement from the woman and even from her daughter, who says, “I know, right?” And we have a lot of fun talking about how mean that woman was. I feel that it heals the rift I had been sensing between my neighbor’s family and myself, because there is nothing that brings two people together more than complaining about a third.

  Now that we’ve bonded, I’m shocked one day to hear a nurse, through the curtain, reminding her loudly and matter-of-factly that she only has six months to live. It seems a strange thing for the nurse to do. Surely you would remember such news? Yet Simon and I sit there picking at our sandwiches on the other side of the curtain, listening to the nurse saying, “You know your prognosis is six months, right?”

  The woman murmurs something. Then the nurse continues in the same forthright tone, “And you know, if you stop the dialysis, it will be a peaceful way to die.”

  Chapter Five

  There is a problem with the Internet connection in my room. It was there at first and then it was gone. Simon takes my laptop and says he’ll try to find a connection elsewhere. The cleaning woman comes in as he’s preparing to leave. We usually chat a bit when she arrives. I’ve learned, for instance, that she’s originally from Poland and that she’s been working at Sunnybrook for more than ten years. But this time, before saying anything, she efficiently sweeps all around my bed, making a pile of my hair and the tops of syringes the nurses use to flush my IV lines.

  “Your husband,” she then says abruptly, tilting her head at Simon’s departing back, “I watch. He don’t leave.”

  She nods at me. I am about to say he did leave, but only to check something, when it hits me what she means. My husband, he didn’t leave me. He stayed. Unspoken is that not everyone sticks around a cancer ward.