Love and Laughter in the Time of Chemotherapy Read online

  As a long-stay patient I have learned that a hospital is not a bricks and mortar building but an alternative world, a netherworld of pain and sickness and suffering. I was once bumped from getting a CT scan because an urgent motorcycle accident victim took priority. I tried not to look, but I couldn’t help but see the blood, hear his agony, and sense the terror of his wife sitting beside me for hours in the only chair outside the procedure room.

  The gore makes it sound medieval, but it is actually a futuristic world of miraculous machines and incredible feats and troops and troops of top-notch professionals. Only these workers can travel between this netherworld and the real world. They are the real hummingbirds. At times it is the real world that seems unreal to me. I cannot picture that there are people out there, working, playing soccer, sending back dishes at restaurants. To comfort me, a friend says that afterwards, this will all be a blur. But I hope I don’t forget, because I think I’ll be a more thoughtful person if I can remember, always, that this netherworld exists.

  Comedy is supposed to be tragedy plus time, but my tragedy and comedy are racing to keep up with each other, and the relief of writing my posts on CaringBridge is such that I soon catch up and have no time left in which to transform my pain.

  Jun 13, 2014 7:32 am:

  Forget everything I ever wrote that made me seem brave or accepting or sweetly resigned. It’s all crap, my sad attempt to continue to please, to win praise, etc. I can put up a hopeful—or in the sad alternative—a resigned front for most of the daylight hours. But then in that hour before bedtime, especially if Jack and Anna have just visited, like they did last night, and chattered all about their upcoming grade 6 graduation ceremonies, and how I’m the best mummy in the world (Anna), and how they don’t want to leave yet, and can’t they go back and see my room one more time (Jack), I am crushed.

  I am crushed by a wave of guilt so huge that I can barely breathe. I lie there and weep and think it is incredibly tragic and ironic or whatever, that I, who have only ever wanted my children to be happy, and I who have done everything I could to make them so, am going to be solely responsible for heaping on them a sadness such as no young child should have to experience, a grief that will stay with them their entire lives. I will not be there for them for all the things they will need me for in the years and years to come. And I know technically this is not my fault—it is random bad luck—but I am the instrument, I am the one who will have left them and it feels like it is all my fault.

  Everything Simon and I did was for them. And we tried so hard especially to make them realize how beautiful this world is. We’ve taken them to England and Mexico half a dozen times. We’ve explored London, Paris, and New York City with their beloved cousins Hannah, Nick, and Juliet and Uncle George and Aunt Michele. Some of our magical moments have been seeing animals in the wild, something so unexpected and unplanned it sweeps you away. We saw a blue whale in the St. Lawrence, mountain caribou in the Gaspé peninsula, mother and baby moose in Algonquin. Jack would drag me out of bed at 6 a.m. at the cottage to go bird watching, and though I grumbled, I braved the mosquitoes and was as thrilled as he was when we saw a pileated woodpecker (think Woody Woodpecker with a great big red crest). This summer we had a big trip booked to England, Wales, and Amsterdam (the latter was Simon’s great idea). We had listened to Anne Frank’s diary on CD in the car and were all so moved by it. We thought it would be really something to show them the secret annex where she hid for two whole years. We wanted to inspire them and move them—and above all bring them joy. We’ve spent every Easter weekend since they were two years old with Kathie in Ithaca, hunting Easter eggs, looking for fossils, and hiking. We’ve had wonderful Winterludes in Ottawa with Kate and her incredibly precious family, especially this last time where the highlight was all eight of us holding hands and zipping down the family ice slide, bumping into each other and shrieking with laughter.

  Any of you who have seen my chambers know it is a Jack and Anna gallery of their artwork and photos (mummy and me in Mexico, in the Dominican, cuddling on the sofa). I’ve managed to include things they’ve written in speeches I’ve given. Apologies to those who have already heard this…when Anna was six she wrote me a story for Mother’s Day that told how I got Jack and Anna. Apparently I won them in a loveliness contest. I and a few other women were walking down the street when we saw two babies on the sidewalk, and we had to decide who would get to keep them. So we had a contest. The categories were who’s the prettiest, who’s the nicest and I won all the categories, and so got to keep the babies. I thought what the story really showed was more what she felt about herself than what she felt about me. She felt so secure and loved that there was no doubt in her mind that she and her brother were so precious that the ultimate prize would be the privilege of looking after them forever.

  And now it may be that I am going to lose that privilege and it is NOT fair and it is NOT right because I did not take it for granted for one single second. I did try so hard to deserve this very great privilege. And even though I am not going to say this to them, I still want them to know somehow that I am so very, very, very, very sorry to be the reason for making them so sad.

  I am so sorry.

  Simon is completely appalled when he reads this post. The first words out of his mouth when he sees me the next day are “Have you lost your mind? What the hell were you thinking?”

  I remind him that I had told him I was starting to get too tired to post, and he was the one who urged me to put up at least something every day so I had a record of my experience.

  He responds, a little testily, I think, that he meant I should be posting a record of how I was handling chemo, not a premature goodbye to Jack and Anna.

  So we agree to disagree; or, more accurately, I agree to let him vet my posts until I can be trusted to post responsibly and not scare away all my CaringBridge supporters.

  “The bathroom is for patients only!” I remind my roommate when I notice that her adult son has used our bathroom. There’s a giant, brightly colored sign on the door saying that. Bathrooms for visitors are by the elevators. I’ve been keeping a beady eye on her side of the room, where the bathroom is, because she has a lot of visitors, including a toddler grandchild, and I’m suspicious that they’re going to use the bathroom. And so when one of them does, I interject immediately.

  “I’m immunosuppressed!” I remind her. “I can get sick so easily. Visitors have to use the bathroom down the hall.”

  “My son, he’s Greek,” she apologizes. “He can’t read English so well.” Which is ridiculous. Since her English is fine and she has only a slight Greek accent, I’m pretty sure her grown children are fluent in English.

  We get along well otherwise. When I see that she’s struggling to eat, despite all the nurses do to urge her, I try to encourage her by telling her what I do.

  “I try to eat something every hour,” I tell her, “even if it’s only a little bit.” I had saved my bread and butter and small packet of strawberry jam from lunch and I was eating it as an afternoon snack, when I overhear her tell the nurse that I told her to take at least one bite every day.

  “Not every day,” I correct from my side of the curtain, “every hour!”

  Simon and I go to one of the hospital cafés for lunch the next day and I optimistically order two hot dogs (I end up not even finishing one). I normally don’t eat hot dogs, but I order them because it reminds me of Music by the Lake and the hot dogs that were served there by the water’s edge, in the sunshine. It’s sunny today as well, and Simon takes me for a ride outside in my wheelchair.

  Simon blames the hot dog. But I think it started with the popcorn. Even my darkest hours begin and end with snacks. I was eating a small bag of popcorn as my bedtime snack that night (because I was in hospital I thought I should have something healthier than Cheetos), rereading Wave, a memoir by a woman who lost her whole family—two young sons, husband, both parents—
to a tsunami in Sri Lanka. When Simon saw me pack it in my hospital bag he wanted to know, what, there were no memoirs about the Holocaust or the Rwandan genocide available at the library that day? But I’ve always found it inspiring to read about people worse off than me. During relationship breakups my go-to was always Amy Tan’s The Kitchen God’s Wife. There’s nothing like that to put the tragedy of “He’s not that into you” in perspective. He may not return my calls, I would think, but at least he didn’t lure me into thinking I was going to be an honored wife rather than an enslaved concubine. I have often thought I would love the job of prescribing books to people for what ails them, like in the book Novel Cure. Or like Lucy’s stall in Peanuts, but for literature rather than psychiatry. I can picture my sign: The Book Doctor is IN.

  I take a second bag of popcorn out of my closet shelf and settle back down with my book. I feel a stabbing pain in my stomach. I shift uncomfortably, but continue to nibble on my popcorn. It comes again, and this time the pain doesn’t stop. I buzz for a nurse. When she comes, it’s someone I’ve never seen before. I ask for more pain medication. She leaves but then returns empty-handed. “You had your last dose one hour ago, you can’t have your next dose for another hour.”

  The pain is searing.

  “I can’t wait that long,” I whimper.

  She looks at me unsympathetically. “You’re eating popcorn,” she points out in an accusing tone. Through my haze of pain I’m not sure what the accusation is, exactly. That if you’re well enough to snack you must not be that sick? She goes away.

  I buzz again immediately. When she returns I beg her to ask the doctor to give me my next dose of pain medication early.

  She presses her lips together. “The doctor is not here.”

  “Call him!” I wail. She reluctantly agrees and leaves.

  I buzz again the second she’s gone. I no longer know what I’m doing. I have never been in such agony. I’m clutching my stomach and I’m moaning with pain. And then I’m screaming. But even as I scream, I’m feeling guilty. You’re disturbing everyone on the ward, I tell myself. There are a lot of sick people here, they don’t need to hear this. But I can’t help it. I keep screaming and screaming. And then.

  Nothing.

  Chapter Twelve

  Most people in my situation wouldn’t think of calling a press conference, but I’m pretty proud of myself for thinking of it. It’s risky, I know, but I have to reveal everything I have discovered about Sunnybrook, even though I’m still trapped here in its Intensive Care Unit. Luckily, there’s a thick glass window at the foot of my hospital bed separating me from the crowds that have gathered in the hallway outside my room. They seem hostile, jostling against each other as the space gets more and more packed. Many of them are carrying weapons. I am relieved to see that when Simon and the kids finally arrive, Jack and Anna are being shielded by my friend Sharon’s sons, Cole with his BB gun and Noah with his homemade knife.

  Doctors are pretending to be nurses, nurses are pretending to be doctors. Not to mention that the ICU itself has been outsourced to the middle of the Canadian National Exhibition grounds instead of staying in the hospital downtown. It’s so they can make money selling food from the concession stands. I can see the posters from my bed, garish shout outs for Tiny Tom doughnuts, deep-fried Mars bars, Bubba’s butterfly chips. It isn’t right. And I’m going to expose it. Reporters start to arrive. I can tell they’re media because they’re ostentatiously checking cellphones and BlackBerries. Some have cameras. I check my microphone and start.

  I go from the ICU back to Cancer Ward 2, this time to a private room right opposite the nursing station. The nurses at the desk can look straight into my room and see me. Every part of me is attached to something mechanical. My Hickman line now snakes up to an extra-large IV stand; it looks like the mother of the IV stand I had before. I have an ileostomy bag attached to my abdomen for fecal waste, a catheter for urine, a tube down my throat for oxygen, a tube up my nose for food. My entire body is swollen until the skin puffs up shiny and tight on my arms, legs, and face. I can move my arms only with great difficulty and I cannot move my legs at all.

  What I learn later is that a part of my intestine started to perforate (a side effect of the chemo, which thins the intestinal lining), causing waste from inside my intestine to leak into my bloodstream, basically poisoning it and sending me into septic shock. But the nurses and doctors managed to get me a scan and then into surgery in record time, saving my life. The surgeon cut out the damaged part of my intestine and stuck the two ends outside to poke out of my belly, the small end, the fistula, covered with a dressing, the larger end, the stoma, covered with an ileostomy bag, for the waste to drain into.

  I tell Simon much later, in a wondering tone, “I have no memory at all of that week!”

  He answers grimly, “I wish I could forget it.”

  I had no idea how serious it all was until I read his post from that time:

  Jun 22, 2014 9:50 am

  I imagine that many people will have been worrying the past few days due to the lack of new posts, so I wanted to update everyone now that I feel able to. On Tuesday Manjusha required emergency surgery following complications due to the chemo. Manjusha spent 4 days in ICU & her life was very much in the balance for 48hrs. Thanks to the expert medical care she received, Manjusha has made good progress & is now back on the ward. She is currently extremely drowsy due to the painkillers, and it is sure to be several days before she will be able to share her musings with you all.

  Thank you all for your amazing support.

  I am on saline for hydration, morphine for pain, anti-nausea meds, and sleeping pills. The clocks stop working. I think I hear my mother’s voice in the hall talking to the nurse.

  “Mom!” I call out. I see that it is five o’clock, which is the time my mother arrives every evening. The nurse comes in.

  “Where’s my mom?” I demand. “It’s five o’clock.”

  She looks at me, puzzled. “It’s five o’clock in the morning,” she tells me. And then somehow it’s three o’clock. Time does not just stop, it goes backwards and the morning often forgets to come. Everything happens in slow motion. Every time I blink, the darkness descends so slowly I think it’s someone’s arm reaching across me, casting a shadow on my face, and I flinch.

  I am desperate to go home. I know about consent to treatment. I know I have autonomy. I have rights. I am convinced they are keeping me here purposely, that the doctors are benefiting financially from trapping me in my hospital bed. Even my trusted friend Homer is in on it. He is paying for his home renovations by keeping me sick. He wants to rig up his second floor so that it can bend and lower itself down to the ground so you can exit the house without troubling to go down the stairs. I can picture his house bending down, like a person bowing gracefully, letting Homer and his wife and their three daughters simply step out of their bedrooms onto the front lawn.

  Sunnybrook Hospital is a ship that is bearing me away. Where is Simon? I am being kidnapped. He has to rescue me while we’re still on shore, because once we set sail it will be too late. I’m frantic. Where is he? They have already done it once before and yet here I am again. How have they managed to lure me on board again, how stupid and trusting am I? A nurse tries to take my blood pressure and temperature but I refuse to let her. I shake my head stubbornly when she approaches me with her thermometer and blood pressure cuff.

  “Please,” my mother begs, frantic herself, “just let her do it.”

  I ignore both of them. I strain to get out of bed, to swing my legs over the side, imagining I could somehow wrestle myself into my wheelchair and push myself out of here, but I can’t move my legs even an inch.

  I pick up the phone on my bedside table and call 911. I tell the 911 operator I’m at Sunnybrook and need to be rescued right away.

  “What?” is all I remember her saying.

  I don�
��t have the breath to explain. I have to hang up. Suddenly, I’m surrounded by people, my doctors, more nurses, Simon, my mother, and, improbably, my friend Sharon, who is here to visit.

  I look down at her hand gently resting on my swollen fingers and I feel doubt for the first time. What is she doing here, I wonder. She doesn’t fit into the whole being-kidnapped-on-a-ship scenario. I frown. My doctor explains to me where I am and I try to take in his words.

  “So, I’m not on a ship?”

  “You’re not on a ship, you’re in a hospital.”

  “A hospital building?”

  “Yes, a building.”

  “In Toronto?”

  “Yes, in Toronto. It is not a ship. It’s not going anywhere. You are not being kidnapped.”

  But I remember believing that so vividly that it still feels like I was. The time I was taken away by ship, I still think. I remember that time. They blame my sleeping pills and change the prescription. I apologize. Homer does not mind. “It’s not the first time a patient’s called 911 on me,” he says.

  It turns out I never held a press conference either. But I don’t find that out until much later when I mention it in passing to Simon.

  “What press conference?” he asks.

  I eventually come up with a strategy to test if what is happening is real or not. I tell myself to open my eyes. It sounds strange, because of course I think my eyes are open. And then when I open them I find, for instance, that I am not wandering in a post-apocalyptic war zone, but am in my hospital bed, which seems comforting, for a change, in comparison.

  In that war zone, everything is dusty and bombed out, people are dashing around trying to keep hidden, scavenging for supplies, for food. Everything is gray. A ragged little girl is lost in the middle of it all; she looks terrified.