At every visit, I have to fill out a DART questionnaire (Distress Assessment & Response Tool). The basic version is straightforward, but every once in a while I get the long version, which stumps me with questions like “Are you able to complete household tasks such as vacuuming?” I mentally chew on my pencil while I think of how to respond (mentally, not actually, because I am now germaphobic and I don’t know where the pencil has been). Simon reads over my shoulder and I can hear him cluck his tongue. I know what’s he’s thinking, and I try to defend my affirmative answer.
“It’s asking if I’m able to vacuum,” I point out. “It’s not asking if I do vacuum.” The rest of the questions are easier, but the circles I carefully shade in, ranking my levels of depression and anxiety on a scale of one to ten, get me a referral to a hospital social worker.
I sit in her office, mopping my tears with the crumpled tissues I have in my pockets, Simon at my side, as he is for all of my hospital appointments. She asks if I’m feeling suicidal. “No,” I say. “I’m pretty sure I’m not.” I look up “suicidal thoughts” later, and then I’m sure I’m not. They’re defined as thoughts about how to kill oneself, which can range from a detailed plan to a “fleeting consideration.” I am below even fleeting consideration. Something more passive than that. Like idly wondering where Simon put the Percocets I didn’t use, and how many are left. Like musing that maybe death would be better, if I don’t get better. But despair alternates with anger, and they don’t have a circle to fill in for that.
If you asked me right at the time of my diagnosis who my model for a sick person is, I would have said the saintly Beth in Little Women, who goes sweetly and uncomplainingly into that good night, thinking only of others, right to the very end. Because isn’t that what everyone assumes? Fat people are jolly. Disabled people are brave. Dying people are saints. Sadly, it turns out I am not Beth. I am the first Mrs. Rochester, the madwoman in the attic, in Jane Eyre. I want to rage and bite and rend and claw and stab. I don’t want to suffer in accepting silence. I want to set fire to my house, and then leap to my death from its burning roof.
I don’t voice this to the social worker.
I voice more specific worries. I’m worried I’m never going to feel better. I’m worried Anna is growing distant from me.
The social worker had a sister who died of cancer. Because she reveals that, I do not dismiss all her suggestions.
Suggestions I dismiss:
Set a timer, to limit wallowing in negative thoughts to ten minutes a day.
Consider purchasing a cute, fun purse, to hide that carry-along IV pump.
Read pamphlet about the importance of acceptance.
See hospital psychiatrist for a prescription for antidepressants.
Suggestions I try:
Set small achievable goals.
Initiate discussion with Anna regarding how she feels about my being sick.
I start one morning, when Anna and I are alone at the table, lingering over breakfast; her with a book, me with the newspaper.
“I’m sorry I missed spending time with you when I was in the hospital for so long. It made me feel angry. Did it make you angry?” I’m following the social worker’s exact script. Anna looks up at me, one hand marking her place in her book.
“I saw you,” she reminds me, “when I visited,” and turns back to her book.
I try again, “Well, I’m hoping to spend a lot more time with you now.”
She puts her book down this time and gives me a thumbs-up sign with both thumbs. And that’s it. Our heart-to-heart took ten seconds. I’m not sure that’s what the social worker had in mind.
To my surprise, it is Jack who initiates the next conversation, this time in the middle of dinner. I had said something in passing about a doctor’s appointment.
“Does that mean me and Anna have a higher chance of getting it?” he asks calmly, as if it were purely theoretical and he is just asking out of curiosity. I stumble in my rush to tell him no, no, no. No one in my extended family has had this. It’s random. He and Anna do not have any higher chance of getting it than anyone else. It is not hereditary.
But other things are. During a trip to England to visit Simon’s family when they were six years old, Jack and Anna found the partially eaten body of a moorhen chick by the edge of a pond on Uncle Richard’s property. They spent all afternoon burying it, and marking the site carefully with twigs and stones and feathers. Just before tea time, all the adults gathered in a semicircle around the grave, while Anna, hands folded in front of her, said a few words about what she thought the life of the little chick would have been like. I only remember the last line, “Little chick goodbye, who never got to fly.” Maybe there is a funeral-planning gene.
I do better with setting small achievable goals: I play Anna’s favorite card game, Slam, with her for the first time in a year; I watch recorded episodes of The Daily Show, with Jack and Simon; I start inviting friends over for morning visits.
In bed, however, I continue to fixate on what I’ve lost, rather than what I can achieve. I’ve always had trouble staying asleep, consumed as I was by the worries that nibble the night and gnaw at you in the darkness. But at least I never used to have trouble falling asleep. I used to drop instantly. Between saying the words, “good” and “night,” to Simon, I was gone. Now I approach the shores of sleep warily, uneasily, like a refugee in a leaky boat. Even if I make it, will they let me stay? I’m weary. I’m exhausted. Still, sleep eludes me. It lies tantalizingly behind barbed-wire fences, and walls patrolled by guards. Even when I finally make it, it is not welcoming. Sleep is one more place where I no longer belong.
I’ve lost my will to live. More importantly, I’ve lost my narrative arc. I’m going nowhere. I’m constantly shuffling through the calendar in my mind. It’s been seven months since I was diagnosed with leukemia. Five of those months I spent in hospitals. But now, all the treatments, the rounds of chemotherapy, the radiation, and the stem cell transplant, are finished. And finished successfully, as far as they can tell at this point anyway. You would think I would be celebrating. You would be wrong.
I read a book about cancer that includes the story of a man who was devastated when he was diagnosed with prostate cancer, and told he had only a 65 percent chance of surviving. I am sunk by the realization that I went through half a year of hell, just to reach a 65 percent chance of surviving; that my victory was to claw my way up to the worst moment in someone else’s life.
What have I won? Life and death are not an all-or-nothing proposition like I had always thought. You can pay too high a price for life, and death is not always the worst possible outcome.
The messages from friends are congratulatory: You did it; hurray; way to go; you’ve been through hell, but now you’re home! But I feel like I’m in a different kind of hell. A prison whose bars confining me are not the wheelchairs and beds and IV lines of the hospital wards, but fatigue, depression, pain, and most of all fear, fear, fear.
What are you afraid of?
I’m afraid I’ve been so absent from Jack and Anna that I’ll never be able to make up for it and regain the important place I used to have in their lives; that the adjustment they have made because of my absence may be permanent.
I’m afraid that maybe being cured is not the same thing as being better. All this time, I thought it would be.
I’m afraid I won’t drink enough water and will get so dehydrated I damage my kidneys. I will get an infection. The stem cells will attack all my organs, one by one. Or something else, I don’t know what, will happen, and I’ll have to go back to the hospital.
Anything else?
I’m afraid that because I’m so ungrateful, so horribly unappreciative of Simon, of my doctors, my donor, my mother, and everyone else, so unworthy of what so many people have done for me…the leukemia will come back.
I don’t think it works li
ke that.
What if it does, though? And what if…what if I never get back to my old self? What if, as exhausted and depressed as I am, this is how I will always be? What if I stay this way forever? What if I’m never fully alive again? What if I’m only this ghost, haunting the life I used to have? What if I would be better off dead?
Really? That’s really what you think?
Fine, not really, really, just kind of really. I want my old life back. I won’t accept this sad, damaged one. I won’t, I won’t, I won’t.
Then don’t.
“Wow,” responds my friend Peter, when he reads a version of the above on CaringBridge. “Too bad your wallowing timer didn’t go off before you wrote all that.”
Most people, though, in their CaringBridge responses are warm and encouraging, chiming in about how wonderful I am, how brave. “Well, except maybe your mom,” I muse to Simon, as I’m recounting to him the messages I’ve been getting. “She has more of a ‘suck it up’ tone.”
“That’s because she’s being supportive of me,” Simon points out.
Chapter Twenty-Three
My head is deep under the duvet, my IV pump is beeping again, and Simon is out grocery shopping. So when I hear someone call my name, I think I must be dreaming it. Then I hear it again, Manjusha.
I turn over heavily, one hand on my ileostomy bag, so I don’t accidentally put my full weight on it. I push off my covers and prop myself up on one elbow so I can reach the IV stand. I click open the control panel and turn it off. I unhook one line to start flicking at the air bubbles. I had to learn how to do it myself, because Simon eventually got fed up and refused to come upstairs every time the alarm went off. The home care nurse, who comes every day to set up the bags, taught Simon how to unhook the lines when the bags are empty and how to flush the lines with heparin and wipe the caps, so the tubes going into my chest don’t get blocked or infected. He also taught Simon what to do when the IV pump beeps. But Simon’s had enough and thinks I’m capable of doing at least that much for myself.
Afternoons were never my favorite part of the day, but now I dread them. The residual optimism of the morning has crumbled, and the evening that marks the end of one more weary day is still an eternity away. The afternoon has no hope, and no momentum. Time stretches and sinks, and takes me with it. Simon keeps suggesting that the IV lines be hooked up while I’m downstairs, so I can sit in the family room, watch TV, read. But I refuse and hide. I reject distractions. I’m too busy being sad.
We’re at a standoff.
“I’m going to stay in bed until I feel better,” I say.
“If you stay in bed, you won’t ever feel better” is Simon’s response, more stern than sympathetic.
He indulged me when I was in physical pain, but no longer. You have to eat, you have to sit up, you have to walk, you have to participate. He’s urging me to try. I’m wishing for a pill that will put me to sleep until all this is over. Neither of us is getting what we want. But by leaving me alone in the afternoon, something he has never done before, he’s forcing me to deal with the IV pump myself, for the first time.
Intent on flicking the line, and watching the air bubbles slowly rise back up to the bag, I forget about the voice, until it calls out again, more insistently: Manjusha. I glance over at my crowded night table. There’s my clock radio. It’s not on. There’s my iPod, the earbuds dangling precariously off the edge. Some crumpled-up Kleenex. A few individual squares of alcohol wipes. A stack of books. A small bowl of cashews, today’s afternoon snack.
Simon insists I eat something every few hours, since I can’t manage anything much at meals. I’ve thrown most of the cashews away, carefully wrapping them in toilet paper first, so no one sees them in the bathroom trash can. I left a few though, as I always do, for the sake of believability. Simon will be suspicious if the bowl is completely empty.
There’s my small sculpture of Ganesh, the god of wisdom; the intricately carved lines a dusty white against the gray stone. It’s my most treasured possession. I love the calm expression on his face, the comfortable weight of the stone in my palm, cool and smooth to the touch. Wait a minute, I blink, he lives on my desk at work, not at home. But I look again, and there he is, reclining at his ease as usual, one ankle hooked over the other, an open book resting on his plump belly. His elephant head is turned away from me.
His mother, the goddess Parvati, created him to guard her chamber while she bathed. When her husband, Lord Shiva, tried to enter, Ganesh confronted him and was beheaded for his efforts. But when Lord Shiva saw how much this distressed Parvati, he gave Ganesh an elephant head as a replacement, along with powers that made Ganesh the most appealed to of all the gods, because he can remove obstacles, relieve suffering, and bestow happiness.
I realize he’s the one who called my name.
He’s never spoken to me before.
Should I answer back? Should I tell him what I want? I want to be healthy, of course. Wait, I don’t just want to be restored to health. I want never to have been sick. And I want never to be sick in the future. But I don’t want to live forever. I want to live, let’s see, ninety healthy years (one hundred, though a more satisfyingly round number, seems greedy and, frankly, too long) and then I want to die painlessly, in my sleep, with no advance warning. And I want all my family and all my friends to be healthy and happy. Oh, but I do want the memory of this (can I have the memory without the experience? Why not, right?), so I remember to be kind when people around me are mean or angry, sad or scared. And also so I don’t get annoyed if I have to wait too long in line for something.
Okay.
Okay, as in it’s okay to want this, or okay, as in okay you’re going to grant this?
Just okay.
Oh I know, you’re going to say yes, but first bring me a handful of salt from a house, blah blah blah.
Yes never has a but. And that wasn’t me.
Wasn’t me who?
Wasn’t me who said yes, but first bring me a handful of salt.
Fine, magical mustard seed then, whatever. You’re going to say first bring me a mustard seed from a household that has never known sorrow.
Magical mustard seed? That’s the Chinese version. Magical mustard seed indeed. Doesn’t exist. But every household has salt. Besides, they’re both a trick. I don’t trick people.
I don’t know. What about when you won that bet with your brother? About who could travel around the world the fastest? Wasn’t that a trick?
No. Your parents are your world, so when you circle them in prayer, you’ve gone around your world. It’s a common custom; a gesture of respect; a metaphor. Metaphors are not tricks. I’m the other salt story.
There’s another salt story?
There are a million salt stories. Gandhi defeated the British Empire with a handful of—
I know, I know. I saw the movie.
—salt. This is the one about the guru and the complaining disciple who walk into a bar. Stop me if you’ve heard it already. No? Well, the disciple is in a lot of pain and wants the guru to help him. The guru, that’s me by the way, gives him a handful of salt, tells him to mix it in a glass of water and drink it, and then asks him how it tastes. The disciple says, Awful. The guru then gives him another handful of salt, tells him to throw it into the lake and take a glass of lake water and drink it, and then asks him how that tastes. The disciple says, Sweet.
I get it.
See, you can’t change the pain, but you can change the receptacle.
I said, I get it.
You can dilute the suffering. You can be the lake.
Okay, okay, but what about the elephant? Who lost his head for you? What about his suffering?
Hmm. Stories differ.
How surprising.
Either he sacrificed himself willingly to help my father, or my father had to slay him in battle and gain his head as
the prize. Either way.
Either way what?
Either way. You win, and there’s some price. You lose, and there’s some gain. In exchange for one elephant’s suffering, some say that all elephants now get to enter the Kingdom of the Gods.
But I don’t believe in gods. I believe in stories.
Either way.
This again?
If there are no stories, there are no gods.
Chapter Twenty-Four
My ileostomy bag is leaking. I’m sitting at the dining room table, trying to eat some cereal, when I feel its contents oozing out where the seal has pulled away from my skin. I clutch it to my stomach and walk gingerly to the kitchen to rifle through the basket that contains my medications, pamphlets, phone numbers. I call my home care nurse, Yuri, on his cell. He’s my favorite nurse, and I can count on him, day or night. I’m breathless and panicky when I reach him. He’s not due to come by for a few hours, but he says he’ll try to come earlier.
I go upstairs, take a hand towel to cover the bag, and lie flat on my bed to wait for him. I wriggle the sheets down, so I don’t make a mess. If life hands you lemons, make lemonade. But what if life hands you a bag of your own shit? Can you make something out of that?
I feel like I’m holding my breath until he arrives. I’m so grateful when I hear his voice greeting Simon at the front door. Soon, I hear his heavy steps on the stairs, and he comes in. He’s put those blue sanitary socks over his shoes, and he goes to the bathroom to wash his hands before approaching me, his cheeks ruddy from the cold, above his graying beard.
“Let’s see,” he says, removing the towel that covers my bag. “Yes, it has lifted off.” He tsks as he peels the rest of it away and puts it in a garbage bag. “But skin good, not red.” He briskly cleans the stoma, flaps to dry it, and sticks on another flange and bag.
Love and Laughter in the Time of Chemotherapy Page 15