Love and Laughter in the Time of Chemotherapy Read online

  “Just open your eyes,” I urge her, “this is not really happening.” I open my own eyes and find myself in my hospital bed, my hand still outstretched to reach her, my words still echoing in my ears. I had said them out loud.

  Another night, I think the world is ending. We are under attack by aliens and we have to escape in fighter jets that keep whizzing by, one after the other, and I keep being unable to flag one down for me and my family. It isn’t only me, the whole world is at risk. We are all going to die.

  I feel like I now understand, really understand, those parents in family court who think the Children’s Aid Society is getting enriched by apprehending their children and placing them in foster care. I think of those claims now sympathetically. Because paranoia is about powerlessness. Even if the choices are all bad, we still need to know we have them. Fear is never completely groundless even as it twists what is real. There are forces set on destroying us, only they’re not from outer space, but from within our own bodies, assassins traveling up our own bloodstreams.

  Chapter Thirteen

  In the face of the horror I cannot control, I become fixated on one goal, something concrete I can achieve with careful planning. I want a banana Popsicle. I ask the nurse for one the minute she takes out my breathing tube.

  “No,” she says, “the feeding tube has to come out first, and it can’t come out until you show you can eat on your own without choking.”

  “Eat what?” I ask.

  “Like applesauce,” she suggests.

  “Okay,” I say immediately. She leaves and returns with a small plastic container of applesauce with a foil cover you peel off, like one you would put in a child’s lunchbox. She has to spoon it into my mouth because I still can’t use my arms very well. I immediately gulp down several mouthfuls to prove I can do it and so they take the feeding tube out of my nose.

  I ask for the catheter to come out as well because it is really painful, but that ends up meaning they have to put me in diapers, since I can’t walk to the toilet, so it is not an improvement. I never think these things through.

  Once the feeding tube is out, the hospital nutritionist comes by to offer me a variety of disgusting protein drinks, which I refuse. I am breaking my promise about eating. But that’s just too bad, I think. I feel no shame at all even though I never eat another mouthful of applesauce again after those first demonstrative gulps.

  “You have to eat,” Simon tells me. “No matter what it tastes like.”

  “You should eat only what’s delicious,” I intone. I am quoting actress and lifestyle guru Gwyneth Paltrow from one of the magazines a volunteer brought me. Simon is not impressed.

  I ask again, during morning rounds, “Now can I have a banana Popsicle?” My hematology team says it is up to the surgical team. The surgical team says ask the hematology team. It’s like having divorced parents and not knowing yet who is the soft touch.

  June visits and I beg her to find me a Popsicle. She hops up ready to oblige and the next thing I hear is her in the hall asking a nurse brightly, “Excuse me, where do you keep the Popsicles?”

  “Noooo,” I think, “ix-nay on the opsicle-pay!” I had meant for her to sneak a Popsicle. Finally I nail down someone from the hematology team to say yes, it’s okay with them if it’s okay with the surgical team. I ask a surgical resident who starts again with “So long as it’s okay with hematology,” but I stop her mid-sentence. Oh no you don’t, don’t start this again, and confirm for her that, yes, yes, yes, it is okay with hematology. She hesitates and then says, Fine.

  The next day I eagerly await Simon’s visit, thrumming with anticipation. But what he brings me are some fancy purple frozen tropical fruit bars because our grocery store does not carry banana Popsicles. I eat one so as not to hurt his feelings, but I’m crushed. Another day he brings what are advertised on the box to be banana Popsicles, but they are creamy, more milk-like, than juice-like. I don’t even bother to eat one. I’m disappointed. Simon is unsympathetic. He refuses to search the city for a banana Popsicle.

  Then my friend Lisa arrives with one from a convenience store near her Riverdale home—it’s exactly what I wanted. It’s a neon chemical yellow, it’s frosted with white, it’s perfect. It’s Proust’s madeleine, the fleeting taste of which he says calls to life the world of his childhood.

  I probably should mention at this point that I don’t particularly like Popsicles, or even bananas for that matter. But like that famous madeleine, which apparently is a kind of ordinary cake, not especially delicious at all, a banana Popsicle exceeds the sum of its artificial parts. It tastes of the peaceful boredom of long, hot, sticky summer afternoons when a sweaty bike ride to the tuck shop to get a banana Popsicle was the highlight of the day.

  Soon other friends are finding sources for banana Popsicles (typically those grimy stand-alone freezers that sit at the front of convenience stores) and just about every visitor I have hands me a few with great pride and pleasure. I think I may still have them in my basement freezer at home.

  I only wanted the one.

  Chapter Fourteen

  Ever since the doctors took away my sleeping pills, I’m back to my usual lying awake at 3 a.m. worrying about things. But now my worries are huge and all encompassing: Will I walk? Will I live? No longer merely scabs to peel, hangnails to pick at, a sore tooth my tongue cannot stay away from. No longer small actions I regret, that I used to replay over and over, always with an alternative better ending.

  Like the time we’re in England for the summer holidays visiting Simon’s family. When we check our bags for our flight home, we’re told the flight is delayed by twelve hours. Instead of leaving at 9 in the morning, it’s going to leave at 9 that night. I quickly grab our bathing suits out of our bags before they disappear down the carousel and we call Simon’s dad to come pick us up at Gatwick and take us to Brighton for the day. Everyone’s grumbling around us but we’re delighted to have one more day. The day is uncharacteristically sunny and warm. We make it to Brighton in good time, have lunch at a Chinese restaurant, buy beach towels in the town, and then walk along the pebbly beach. The water is freezing, and the waves knock us down repeatedly onto the stony floor of the sea, but we’re still happy. We continue our walk, aiming for the big pier with its burlap slides and rides and fortune-telling booths and stalls selling Brighton rock.

  On the way we pass a trampoline. For ten pounds sterling you can be strapped into a harness and then bounce incredibly high, turning somersaults and flying through the air. Jack has been collecting flyers that were blowing on the beach offering half-price discounts, five pounds off. He gives me two, saying, “Now we can go for free!” I explain it doesn’t work like that. We stand and watch for a while. Two young girls are bouncing side by side, their long blond hair blowing in all directions in the wind and they’re laughing and laughing. I’m entranced and want Jack and Anna to have a go, but Simon feels there’s not enough time if we also want to see the pier.

  The pier, though, is disappointing. It takes Jack and Anna forever to decide what rides they want to go on. Anna chooses unwisely and gets nauseous on one that spins a bit too abruptly. We buy the wrong number of tickets, not realizing that some of the rides require adult accompaniment, so then we have to buy more and we end up spending more than twenty pounds and a bit more time than we should have. It’s a rush back to the airport, but we make it just in time, skin sunburned and itchy from the salty sea.

  All I can picture, though, is Jack and Anna jumping effortlessly on the trampoline we never let them try. Leaping and laughing, while the sun shines alike on their glowing faces and the glittering sea. I see them flying through the air in my nighttime regrets more clearly than I remember anything else from that trip.

  On the first day of grade 4, Jack was starting a new school. “The teacher will probably ask everyone what they did in the summer,” I tell him. “Why don’t you take in one of your souveni
rs from Paris to show? You can talk about what we did there.” He likes that idea and chooses his favorite souvenir, a snow globe of a tiny Paris scene with all the monuments crammed close together, the Arc de Triomphe, the Eiffel Tower, Notre Dame. I had thought he would choose his metal model of the Eiffel Tower, not the delicate glass snow globe, but I don’t say anything, just wrap the globe in newspaper and put it in his backpack.

  When he gets home from school, he’s bouncing up and down with excitement. He’s had a wonderful day and he loves his new teacher. All through dinner he can’t stop talking about all the things they did, and all the things they’re going to do, and all the pets in the classroom, fish, lizards, guinea pigs. He wants to head out to the ravine immediately to find snails for the tortoises.

  Then, as I pick up his knapsack to take out his lunchbox, I notice it is leaking water. My heart sinks. The glass dome of the snow globe is shattered. Jack bursts into tears, he’s inconsolable. I feel even worse because it was my fault for suggesting he take it. What a stupid idea. And they didn’t even talk about what they did this summer. He never even took it out of his bag.

  After he and Anna have gone to bed, I sit with my teary eyes and my iPad, looking up Paris snow globes on Kijiji. I find dozens, but not the same one. Over the next few weeks Simon helps me research how to make your own snow globe. “It’ll be even better now,” he tells me. “It’ll be more special, because when he looks at it he’ll remember how hard you tried to fix it, how much you cared.” I’m not convinced, but we buy distilled water, glittering flakes, special glue. We can’t find a glass globe but we use an old baby food jar because it fits on the base perfectly. It’s still sitting on Jack’s bookcase. I don’t know if he thinks of it at all, but any time I go into his room I see it and I remember. In the night I close my eyes and I can see the snowflakes swirl all around the arches of Notre Dame Cathedral, even though we went there in the summer.

  I hesitate to mention my other big regret: choosing Stanford over Columbia for my journalism master’s. Stanford is the better university overall and I was swayed by that fact and the fact that I got a full tuition scholarship there and only a partial one at Columbia. But Columbia has the more renowned journalism program and of course is in the more exciting city. There would have been much more to write about living in New York City than in Palo Alto, California. I wasted almost my entire year at Stanford picturing being at Columbia instead. My regret was real, and sleep-depriving, and enervating. But I know what my readers are likely saying. Really? These are your worst regrets? Breaking a snow globe? Choosing the wrong world-class university?

  Fuck you, you deserve to have cancer.

  Chapter Fifteen

  I delay pressing my call button for as long as possible, even though I need to have my diaper changed. I’ve needed it for several hours but I’m trying to hold off because I hate asking too often when the nurses have so many more important things to do. I hate being a pain.

  On my bedside tray, I have my usual collection of white Styrofoam cups of water: one rustling with ice, the straw still unbent, its little paper cap still on; the others, half empty and tepid, the straws leaning wearily off to the side. Every time a nurse or orderly comes by, they give me another one. I can’t bring myself to take more than a few sips, even though I’m constantly being warned about dehydration and kidney problems, because I pee enough as it is, and I don’t want to be the patient they complain about at the nurses’ station. Since my room is the closest to the station because of my whole ICU brush with death thing, I can hear most of their conversations.

  Say there’s a fire, I think, and they have to pick which patients to rescue first, who are they going to go for? The picky, whiny, constantly buzzing because their diaper’s the teensiest bit wet ones, or the stoic, uncomplaining, come by only if you have nothing better to do ones?

  Exactly.

  Babies seem unbothered, untroubled, unruffled by the whole diaper-changing process. I don’t understand how this can be. When Jack and Anna were infants, they didn’t seem to mind it all. And I didn’t even mind doing it. I thought I would. Although I had babysat a lot as a teenager it was never with actual babies, so the first diapers I changed were for my own children. We used cloth ones to be environmentally sound and changed them the second they got wet because they’re not as leak proof as disposables. And instead of using those cold diaper wipes, we used cut-up J-Cloths (that got softer and softer after being laundered) dipped into a tub of warm water. Jack, especially, seemed to enjoy it. He would “awoo” delightedly and I would “awoo” right back at him like we were doing backup together on Aretha Franklin’s “(You Make Me Feel Like) A Natural Woman.”

  Finally I can’t stand it any longer and press the call button. I hope that young gentle nurse comes—the one who’s soft, with both her voice and her hands. But instead, two older nurses show up. They’re fun and friendly and chatty (and somehow always work in tandem) and I’m usually happy to see them, just not on diaper duty.

  “Come now, honey, turn on your side for me,” one directs, while she continues her complaint to the other about some administrative mix-up. “So you know I tell her I didn’t get no email about no schedule change, but she say I sent it this morning, but girl how am I supposed to get it this morning when my shift start at seven?”

  With a huge effort I turn partially onto my left side and cling to the bed rail with my right hand. I’ve barely shifted, but it’s the best I can do. My body is a dead weight almost beyond my control and even this slight movement takes a lot. My fingers are already slipping off the rails and I don’t know how long I can hold on. This is their cue to leave the room immediately in search of supplies.

  One comes back with a single wipe. Uses it. Promptly leaves to get something else and I don’t see her again for fifteen minutes. Then the second one leaves for a fresh diaper and a clean sheet. By this time, the first nurse is back with the diaper rash cream, which she slaps on quickly; it’s very cold. I want to die of embarrassment. I want to stab myself to death with the tiny pair of scissors they have left lying among my flannel sheets. No, wait, I want to stab them first and then myself. I want to wake up and be a judge again, not an overgrown diapered baby.

  This whole waiting for the perfect moment to get a diaper change, and then getting it, has taken the entire morning. It’s lunchtime now and Simon arrives to take me outside in the wheelchair, an equally daunting production. Simon circles around the ward to find an orderly and asks him to bring me a wheelchair. It takes a while to find a working one. Then I buzz for a nurse to come and unhook me from my IV pump, which means my request has to be made and accomplished between the bags of medications. And it can’t be just any nurse, but one who is specially trained regarding IV lines because they have to be cleaned and clamped carefully for fear of infection or blockages.

  Then I need two nurses (because one is not strong enough) and the sling to lift me into the wheelchair. The nurses wedge the canvas sling, with its dozen differently colored straps, underneath me and then attach the straps to the winch on the ceiling, carefully matching the colors. The electric winch lifts me up and I sway in the air like a beached whale that has to be returned to the sea. The nurse operating the winch carefully lowers me into the wheelchair, the sling now bunched in hard ridges underneath me. Simon kneels down to unjam the footrests, tucks a pillow behind my back and a shawl around my shoulders, and finally we are off.

  Of course this is my cue to pee.

  But I don’t care. I feel a swell of something that takes me a few moments to identify as happiness. We are leaving the ward. It takes ten minutes to traverse the long hallways, but finally we’re outside. The sun is coming out from behind a few clouds. There’s a breeze and it smells only like air, nothing else. We bump along through the parking lot, Simon threading me expertly between the cars, because bumpy as it is, it’s still smoother than the sidewalk, and then we hit the path by the ravine.

>   Simon takes me for a little ride first, before we stop to have lunch. The groundhog is at its usual position, edging toward the picnic tables in search of scraps. We pass by the daycare center that never seems to have any children in it. We go as far as the moose. Years ago, these brightly painted, almost moose-size sculptures were scattered all over the city. But I haven’t seen one for a while. This is a sick moose in an ill-fitting blue hospital gown. We visit it every lunch hour. I pet its bandaged leg; it’s cool and smooth to my touch.

  We retrace our steps down to my favorite bench because it’s in the shade. Luckily it’s free. There are cigarette butts scattered underneath the No Smoking sign. Simon parks my chair at one end of the bench, facing the ravine and he sits on the bench and faces me. He has sandwiches for us, cheddar cheese, tomato and cucumber; and a can of Coke for me. The breeze is a bit chilly, so he tucks the shawl more carefully around me. We always seem to pick the time when someone’s noisily mowing the small patch of lawn behind us.

  “What are you thinking?” Simon asks, since it is unusual for me to sit even for a moment without speaking. I bite my lip, and look down at the trees, instead of at him. I know he thinks I’m not ready, but I say it anyway, all in a rush: “I want to go home.”

  He doesn’t answer, just hands me the Tupperware container of chocolate chunk cookies. I eat two, saving my last sip of Coke until I’m finished so the crumbs don’t choke me. My throat is thick with longing to go home. We only have about forty-five minutes from the time we left my bed because Simon has to be home when Jack and Anna return from school. Simon puts the containers away and takes me back to the ward.