Home Journal Issues Journal Index Blog Search Contact Us Help

Volume 3, Issue 2
Summer 2007:

Heat Loss

Laura Dluzynski Quinn

Cell 2 Soul. 2007 Summer; 3(2):a14

"This situation is unacceptable!" snapped the aide as she handed me a Styrofoam cup filled with ice chips and a plastic spoon. "I've called repeatedly to complain. How many times do I have to request a fan before it arrives?"

"Is it really hot in here, or is it just me?" I asked Malcolm. I had almost always felt hot — wearing short sleeves in the winter and throwing off our quilt even when Mal snuggled beneath it — so I wasn't sure.

"Pretty stifling," he said, "but at least you have a great view." He laughed and gestured to the opposite wall. All I could see was an ice machine and then, behind a glass door, piles of white blankets and towels. As I chuckled, I felt a tug on my nose, reminding me that I now had a tube in it running down to my stomach.

Parts of my abdomen had been hurting for about a month. Two weeks ago, my doctor had said I was constipated and to drink Metamucil twice a day; I felt better for about a week. Then, the pain returned. It had always been stabbing, but now it burned, so the doctor advised me to take Milk of Magnesia, as well as Maalox. That was on Friday. He said if I didn't feel better by Monday, he'd order an ultrasound.

Saturday night, after trying for hours to sleep in bed, I finally dozed for a while on the living room couch; still, I resolved in the morning to tough it out until the next day. I forced down some breakfast because the pain subsided whenever my stomach wasn't empty. But by nine a.m. Mass, the pain was back; I hunched over the pew and prayed for an end to it, or at least for the strength to deal with it. Afterwards, I hunched over a grocery cart as I shopped for the week's supplies. I longed to stay home for the rest of the day but knew how disappointed my almost three-year-old daughter would be if I didn't take her to Ethan's birthday party. Once the day's obligations were finished, I napped, woke up drenched in sweat, found my family in the living room, and started to cry.

"Don't, Mama," pleaded Zia. She, Malcolm, and Caleb had been playing in a house built out of dining room chairs, cushions from our couch, and an old sheet. Cal had crawled out behind his big sister and now pulled himself up by hanging onto one of my knees.

"Why don't you go to the emergency room?" said Mal. "Maybe they can give you something."

I convinced him that I could drive myself the ten minutes to the hospital. After I kissed everyone goodbye, the kids eagerly climbed back into their little house. I hoped I would be home in time to give Zia a cuddle before Mal started her bedtime routine and to nurse Cal off to sleep.

The pain wasn't too bad in the car. It subsided whenever I was sitting upright and was at its worse whenever I lay down. As I told the nurse in the triage unit my story, I started to cry again; she was astounded that my doctor had only suggested laxatives. "Don't worry," she said. "We'll take care of you."

But after she sent me back to the waiting room, I wasn't so sure. I saw a woman and a teenage boy watching a Patriots game on a television that hung from the ceiling; another woman was flipping through some kind of flash cards. I was so tired I couldn't do anything but stare at them and the occasional staff member who would pass by. Tears welled up in my eyes as I crossed and uncrossed my legs, stretched them out, and tried to find a spot on the wall behind me to rest my head.

Perhaps I had developed ulcers … or maybe an organ had ruptured. These were two possible causes of abdominal pain I'd found during a late-night search of the Internet. Once I started reading about cancer, I had called it quits. I'd survived other medical scares: suspicious mammograms, two negative breast biopsies, and a colonoscopy. I'd given birth to perfectly healthy Zia, despite an alarming spot on an ultrasound that had suggested Down's syndrome. Caleb had been healthy, too, even though his placenta had partially separated. Everything would be okay, I thought.

Finally, the receptionist called my name and escorted me to an examination room. Latex gloves and other supplies were piled in one corner. I noticed an eye chart hanging on the far wall, and asked myself, what kind of emergency would warrant an eye exam? I removed my jeans and T-shirt, slipped my arms through the sleeves of a thin cotton johnny, and hoisted myself onto the gurney.

Even though I was exhausted and wanted to doze, neither my body nor my mind would let me. Lying on my side was impossible because the head of the bed was raised, so I stayed on my back, pulling my legs up and then pushing them back down again, over and over. I contemplated calling Mal but figured right about now he'd be pleading with Zia to eat at least a few bites of her nightly quesadilla and some kind of fruit, while trying to keep Cal from throwing all his food onto the floor. Plus, I had nothing really to tell him.

I focused on the clicks of heels, the thuds of heavy-soled shoes, and the squeaks of rubber, but they all stopped somewhere before they reached my door, or continued through one to the left. How long should I reasonably be expected to wait, I wondered.

My hopes of being treated were raised once Sally, the nurse on night duty, stopped by to introduce herself, but then half an hour passed. I fingered my abdomen from time to time, making sure I could point out the most painful spots as soon as the doctor arrived. I started to think my chart might have been misplaced or that I had simply been forgotten. I was, after all, in the room furthest from the nurses' station. After another half hour went by, I heard a doctor speaking to a patient in a nearby room and convinced myself that I'd be next, but then the doctor's voice, and then his footsteps, faded away. At one point, I got out of bed to look down the hall, hoping someone would just notice me.

After about two hours in the exam room, I heard shuffling footsteps approach, pause, and then enter my room. A young man dressed in scrubs and tennis shoes, and needing a shave, introduced himself as the doctor on night duty. He looked so tired I felt sorry for him and guilty for thinking the staff had forgotten me. He seemed to listen to my story more out of a sense of obligation than interest or concern, for he barely looked at me and just jotted down a few notes. After he examined my abdomen, he ordered tests. Sally returned to start an I.V. and tell me that I would soon be wheeled down for a CAT scan; then a phlebotomist drew a few tubes of blood. I received nothing for the pain because, they told me, they didn't want to mask any symptoms until I was diagnosed. But now, at least, I was getting some attention.

I draped an extra johnny over my back before I headed to the restroom down the hall. As I slowly made my way back to the exam room, holding a cup of urine in one hand and wheeling my I.V. drip with the other, I started to sweat. Then, I felt nauseated, weak, and dizzy, and as soon as I made it back to my room, I collapsed onto the gurney. I hit the call button and shouted for help; by the time someone walked into the room, I was already retching. I then sensed the room filling up with people. Someone placed a clean sheet next to my head just in time for me to vomit on it, a dark reddish-brown purée. The nurse from the triage unit entered the room, took one look at me and yelled, "Bowel obstruction!" as though she were a game show contestant. When she approached me again, a couple of minutes later, she was rubbing some kind of lubricant on one end of a tube.

"What are you going to do with that?" I squeaked out.

"I'm putting it up your nose," she said, and then, with a glare, she added, "Don't you dare try to grab my hand or push me away." Some other person in the room was holding a straw to my mouth.

"Take a sip of water and swallow each time I tell you to," the nurse commanded. Then I felt a pain so searing I spit out the straw to scream, squeezed the edges of the gurney, and was convinced the tube had ruptured something delicate.

It was time to call Mal.

Yet again I kicked off the sheet a well-meaning staff member had neatly placed on top of me, still waiting for the promised fan to arrive, and holding Mal's hand. Two more hours passed like this, and then the doctor came in. His arms hung loosely at his sides and his eyes met mine for the first time: I had become his whole center of attention, at least for the next few minutes. He no longer looked simply tired; he looked sad … reluctant to speak. As soon as he drew the faded green drapes around my gurney, trying in vain to give us some privacy, I knew that what he had to tell me would not be good. The scan, he said, had revealed tumors in or around my stomach, pancreas, liver, and spleen. Arrangements were being made to transfer me to Boston, where I would be admitted and seen by specialists.

Two weeks later I was told that I had GIST, a rare form of cancer that has no cure.

Now, Mal and I talk mainly at night, in whispers. We discuss how we might make our lives more meaningful: enjoying time together as a family; finding more time for ourselves as a couple; taking pleasure in hobbies — like reading and watching films — that we'd been neglecting since having our children; starting new hobbies; volunteering; traveling; simply making the most of each moment.

He says that friends and colleagues often ask him how he's doing and tell him he looks tired. I say that people are always telling me that I look great. And we laugh.

"It seems like things are getting back to normal," says Mal.

To an extent, he's right, but, though I say nothing, in many ways he is not.

Our home is not ours anymore. Mal and I never had to whisper when we talked before. My mother's suitcase was never before in the middle of Zia and Cal's basement playroom for weeks at a time. Nor did I ever have to cautiously open the kitchen door in order to avoid shoving aside Sissy, her fifteen-year-old blind and deaf Pomeranian. The coffee maker, which used to live in the pantry, has become a permanent fixture on the kitchen counter. When I hear a phone ring, I have to stop to think whether it's mine or my mother's cell.

It's as though I'm a child again, dependent, or a guest in the home that used to be mine. At first, I couldn't get through a day without at least two naps. I couldn't drive, and I was too nauseated to cook. I had been warned not to pick up anything too heavy — including my children — and finally complied after nearly dropping Cal when a stabbing pain shot through my right side.

Now that I'm regaining some energy, I'm slowly taking on more of the duties that had become my mother's or Mal's, but I sometimes doubt whether I will ever be able to do everything on my own again.

And yet while I long for my independence, I also crave, more than ever, connection with others. Before my visit to the E.R., I used to spend half an hour on our elliptical machine, three or four nights a week. But now the machine sits in the corner of our living room, collecting dust, a good hiding place for Cal when he wants Mama or Pappy to find him. Mal has given up asking me when I'm going to start exercising again, and I feel guilty. We had used a chunk of his bonus to pay for the machine, and although Mal has used it a few times, it was mainly a gift for me.

At first I thought that I just didn't have the energy to get back on it; now I realize that something more is holding me back. Exercising did not protect me from illness, and so I feel betrayed. But even more, I don't want to spend even thirty minutes a night moving my legs, like a gerbil on its exercise wheel, listening to strangers on NPR speaking to me through headphones. I'd rather listen to Zia, who stands right in front of me, belting out "Jingle Bells." I'd rather spend my evenings writing thank you notes to neighbors, friends, and former colleagues who have dropped off meals, sent me words of encouragement, or have come by to visit. I'd rather phone people I haven't seen or spoken to in months, or even years.

But I also know I need to rest and take care of myself. Plus, I simply can't do all that I used to do for my family. Zia and Cal depend on me, they need me, and they don't understand what's been happening. They shout, cry, or whine when one of the grandmothers tries to give them juice, dress them, or bathe them. I fight feelings of guilt when I take a nap or leave the house to attend a support group. After all, I don't know how much time I have left with my family. And even when I try to be with them, other things, out of my control, take me away.

Back in the E.R., the moment I was injected with morphine, right after learning about the tumors, I experienced a floating sensation and relief from pain, but I also felt extremely sad. I had been cheated, robbed: I knew that I would never nurse Cal again. By that point I had cut back to nursing him just twice a day, aiming to wean him by his first birthday, a couple of weeks later. I was not yet ready to stop nursing altogether, but then, suddenly, the choice wasn't mine.

These days, Mal and I, and even my mom, take turns putting Cal to sleep. I realize I can no longer offer my little boy anything more than they can. He no longer falls asleep at my breast, and I no longer gaze on his shut eyelids as he slumbers in my arms. Now, when I place him in his crib, Cal's awake; the railing is between us as I rub his back. He watches me as I leave the room and close the door, and sometimes I hear him cry before he drifts off to sleep.

When I think of Zia, I feel fear more than sadness. A couple of months before the onset of my abdominal pains, I had decided to consult a social worker to help me cope with my intense toddler. Never before in my forty years had I experienced the type of anger my two-and-a-half-year-old could elicit from me with her defiant "no's" and destructive behavior, from ripping down her wallpaper to removing her diaper and defecating on the floor. As a parent, I often felt like a total failure, especially difficult since I had spent years longing for a child. The social worker had been helping me deal with Zia's defiance, but I still lost my temper and patience more often than not — yelling and even slamming doors. Cal might not remember me at all, I thought, but Zia would … and hate me.

"I've been so mean to Zia …" was what I sobbed as soon as the doctor had left Mal and me alone in that E.R. room.

Mal stopped me with an embrace. Apart from the gray hairs that had sprouted in between his dark brown ones, and a few creases around the eyes and mouth, he looked the same as the lanky twenty-four-year-old I had met fourteen years ago on a blind date while we were both in graduate school. His hazel eyes, framed by lashes long enough to make any woman envious, met mine. He comforted me, as always, by telling me what I needed to hear: "You're a great mother, and Zia loves you. … I can't tell you that everything is going to be okay. All I can tell you is that I'm going to be right here with you — whatever happens, we'll fight through it … together."

And Mal has been right beside me through it all. He stayed home from work until I was diagnosed and we realized, with tremendous relief, that although I have a rare form of cancer, I still might have years to live. We don't know for sure, and we're scared by the uncertainty. Mal has sat beside me in waiting rooms and in the oncologist's office. As with the birth of our children, he quells my doubts, assuring me that I can, indeed, meet the challenge ahead. His support has its limits, though. In the delivery room, he could not push for me, nor will he ever know exactly how frightened and exhausted I was when I told him, while delivering Cal, that I simply didn't think I could keep at it. Similarly, he can't understand exactly how much I fear abandoning him to raise our babies on his own. I feel too young to have cancer, and my children are certainly too young to lose their mother. Some days I feel like I'm pushing as hard as I did in the delivery room, only now I do so, not to bring new life into this world, but simply to hang onto my old one.

Mal is closer to me than anyone, yet something even closer draws me away. Aliens, invaders, that have taken up residence around my stomach and in my liver, that have reached the edge of my spleen. Three of them over eight centimeters in length must have been growing for years, in secret. Now that I know about them, I don't forget them. Each evening I feed them Gleevec, the mustard-colored miracle drug I'm depending on to keep them in check.

Even so they rob me of my energy and warmth. Now, instead of being too hot, my fingers are icy; my toes are cold. My oncologist says that none of her other patients have the same complaint, so I don't know if it's a result of the cancer, of the drug that I'm taking to combat it, or of something completely unrelated. All I do know is that the coldness is just another reminder of the aliens inside. I wrap myself in a white robe that had hung in my closet for years, unused. I've unpacked boxes of turtlenecks and heavy sweaters that used to make me sweat. When I watch TV or sit at the computer, I wrap myself in a prayer shawl knitted by one of my friends or a quilt made by my mother-in-law: Mal's New Zealand friends and relatives, feeling the distance from us more than ever, used a black fabric pen to fill the back with words of support and encouragement. I cradle my mugs of tea in both hands, desiring the warmth to penetrate my fingers.

A couple of weeks ago, I had my first CAT scan since starting treatment. In the waiting room, I sucked my lemon-flavored iced tea prep through a straw and huddled under my coat. Mal sat beside me in a light-weight shirt reading The Boston Globe. After I finished the first of three bottles and dutifully opened the second, Mal said, "You're doing great." The nausea grew with each swig.

Alone in the changing room, I noticed goose bumps on my flesh; the thin johnny provided no warmth. Clutching my clothing to my chest, I hesitantly entered the room where the CAT scan machine waited for me. This time I welcomed the blanket the technician offered. After I passed under the arch of the machine once, the tech started the IV of a contrasting dye. And just as she'd explained, I felt a sensation of warmth spread through my pelvic area up to my chest, the warmest sensation I'd felt in months coming from another invasion, a fluid that would enable my doctors to see and measure my silent companions.

As Mal gets into bed beside me, he asks how I'm doing.

"Tired but otherwise pretty good," I say, and thank him for going to my appointment with me today.

He tells me how great it is that the tumors are shrinking and how glad he is that I'm feeling better.

I realize I am shivering. Mal encloses one of my hands in his, and as I lie beside him under the quilt, I'm stunned by the contrast. He is so warm, so full of life. We squeeze each other's hands tightly for a few seconds before letting go. Then, I turn towards the window, curl up, and try to sleep.

Return To Top