The Outcast (29 page)

He could not do this to Leah, could not enter her sister’s room when their own room was right next door. Leah was still his wife regardless of his years-long fantasy that Rachel was his bride. Releasing a shaky breath, Tobias took three more steps and turned the doorknob to his and his wife’s room. The bedroom was dark and hot and smelled of diaper cream. Despite the heat, the covers were cinched around Leah’s body as if she didn’t want them or her disturbed. Their child, Jonathan, was asleep in his cradle at the foot of the bed. Peering in at him, Tobias shed his sweaty garments, draped them over the cedar chest where Leah stored her wedding dress and Jonathan’s outgrown
things, and slid beneath the sheets. Tobias reached out a hand and placed it on Leah’s shoulder.

But she did not stir or make a sound.

Tobias was filled with such longing to reconnect with his wife and drive out the thoughts of her sister that he contemplated making love to Leah even if she was not awake. But he knew that was wrong. So my son flung off the covers, turned on his back, and stared at the moonlight polishing the dull ceiling silver until his exhaustion overcame his fear that he would not have enough strength to fight the feelings he harbored for Leah’s twin.

Rachel

Pushing open the heavy door, I step into the wind buffeting the concrete park attached to the hematology and oncology unit. To my right is a twenty-foot castle, icicled with turrets and porticoes, which the children have long since abandoned for the warmth of inside. To my left is a dragon whose mosaic scales shimmer in the late-afternoon sun. Planters filled with dry potting soil and crumpled leaves left over from summer punctuate the maroon playground mats along with three bench swings made from metal and wood.

At first, I think the kidney-shaped park is deserted, but
then my nose is pricked with smoke. I look in the corner to see the young father who sometimes comes out here to sneak cigarettes and cry. Scrubbing a hand across his dampened face in embarrassment, he nods at me, tosses his cigarette butt on the sidewalk, and stalks back inside.

He has a four-year-old daughter with leukemia.

I walk over to the secluded area where that young father stood—his smoke hanging thick on the air, his cigarette embers still glowing orange on the gray cement—and stare down at the city.

Nobody out there knows what is happening in here; nobody out there knows our stories or our struggles. Not the bohemian college students who squander time loitering in coffee shops and call it studying; not the suited workers who log in their forty hours a week one begrudging day at a time; not the homeless people who trudge up and down the sidewalks, packed down with everything they own like lackluster gypsies.

I do not blame these people for their oblivion. I did not know much about cancer and its rippling effects throughout daily life until my own life was assaulted with it. Now that I do, I would like to sink into oblivion as if it were a tepid bath and let the water close over my head, blocking all distraction and sound.

But I cannot sink into oblivion. Although I haven’t recuperated from the last battle, I must prepare myself for the next, a battle that is going to make the last two months look like mere training ground. You see, Dr. Taizeen
Sengupta found cancer lurking inside Eli’s bones when he performed the invasive bone marrow aspiration that left my son bruised and sobbing for days. In less than two months, the cancer’s not only been unresponsive to the chemotherapy treatments, but the malignant cells have seemed to feed off the poison, flaring up in new places that never showed up in any of Eli’s PET or CAT scans before. Because of this uncanny aggression, in such a short time Eli’s non-Hodgkin’s lymphoma has skipped from Stage II to Stage IV, those two innocuous numbers dropping Eli’s chances of survival by 40 percent.

Yesterday, after spending the majority of the day conferring with pediatric oncologists across the nation, Dr. Sengupta took the elevator up to Eli’s room. He rested his back against the corner sink, took off his designer spectacles, and anxiously twirled them by one ear stem as he explained the next step he would like to take. It was a radical step, Dr. Sengupta said, but one he believed was necessary to oppose the radical form of my son’s disease. Dr. Sengupta wants to wipe out what little immune system Eli has left with intensive combination chemotherapy formulated to be more aggressive toward cancer cells than the last round. After this—after Eli’s white cells are completely destroyed, leaving him so vulnerable to infection that a bouquet of flowers sent to the room could send my son to critical care—Dr. Sengupta would like to perform a bone marrow transplant.

Dr. Sengupta was kind enough not to gloss over the cold, hard fact that a bone marrow transplant is a risky procedure
even for someone ten times the size of my son. In one hundred days, the patient’s body has to either accept or reject the new bone marrow that has been placed inside it using a small bag filled with the yellowish fluid that drips down through an IV or a Hickman line like the one burrowed inside Eli’s chest. Accepting this alien bone marrow would mean that the strands of Eli’s six-and-a-half-month-old DNA have been totally revamped; if he were to cut himself, he would bleed the DNA of someone else’s blood. But rejection means graft-versus-host disease (or GVHD, as the acronym-loving medical field refers to it), which is when the patient has not grafted the new bone marrow into his or her body, causing the body not to recognize these alien cells and to go into combat mode against itself. This new disease can affect the skin and the interior of the bowel, and if not treated, GVHD has the power to kill a patient faster than cancer ever can.

I have not told my
mamm
or Ida Mae what Dr. Sengupta said. They both know the chemotherapy did not do as intended and that the bone marrow aspiration Dr. Sengupta performed revealed more cancer. But they do not know about the possibility of a bone marrow transplant. I have not told anyone about this possibility because I am not sure what I am going to do. Dr. Sengupta might suggest a bone marrow transplant, but it is still just that—a suggestion, if an imperative one. In the end, the decision to bring my son through hell and hopefully back is up to me. I wish it weren’t. Over half of Eli’s life has been riddled with pain; am I now going to extend that pain over the next three
months while Dr. Sengupta performs a procedure that sounds like something from a science fiction novel?

For twenty-two hours, I have been calculating the pros and cons of this quandary, trying to come up with a solution yet finding none. Although Dr. Sengupta has wisely given me my space, I can feel the tension radiating from the nurses as they cycle in and out to do their rounds. Many of the younger ones—like Leslie with her red hair and glow-in-the-dark nails—have not assumed that professional aura placing between themselves and us an invisible barrier that cannot be breached. I can see how their eyes sometimes mist as they look down at my son, whose angelic face is ravaged by the side effects of the chemotherapy more than the disease. Over the past two months, these nurses have been the first ones to see me awake and the last ones to see me crying myself to sleep at night. They have been the ones I run to when Eli’s machines start beeping and I don’t know why. The ones who chat with me in the darkness as they punch in the information the computer requires—the whole time acting like they haven’t come in and seen me huddled in the pullout bed, praying and sobbing while holding my son’s fragile hand in both of mine. Almost all of these nurses I know by both first and last name. I know how many children they have and what grades they are in school, which subjects and sports they favor. At times, I feel like I know more about the nurses’ lives beyond this hospital than they do about mine, but I think it is easier for them to share these empty details than to ask about our families and our lives, knowing that
we are in the middle of being torn apart by this malignancy called cancer that someday could also affect them.

Last night, after Russell and Judah reassured me that they would remain with Eli, Ida Mae drove me to her tiny tin-roofed cottage between the highway and the train tracks. I was so weak as I climbed down from her truck that she had to run over and wrap her arm around my back to keep me from falling. In the house, she lowered me into a rocking chair and turned on the gas logs. I stared at the contorting flames, listening to Ida Mae drawing a bath for me. I could smell the lavender she poured into the water, and when I got up and staggered through her bedroom into the bathroom, I saw that the water was saturated with so much oil, the top glistened with an iridescent sheen.

Ida Mae forced me to sit on the closed toilet lid as she lit candles on the shelf, casting shadows on the walls that—in my sleepless delirium—looked like the face of a crying child. Motioning for me to stand, Ida Mae carefully slid out the straight pins that bound my cape dress together and pulled my legs free from the constricting black tights. As she continued to assist me in shedding the layers of my Plain garments, I recalled that Sunday morning I’d spent trying out her cherry-flavored lip balm and spraying myself with ancient perfume, envisioning that I was pierced and painted and parading the latest fashions like
any other
Englischer
woman without troubles to her name. That dream seems so removed from me now; the only one I yearn for is that my son can make it out of that children’s hospital alive.

Rolling up her sleeves, Ida Mae licked beads of sweat off her upper lip and slipped two arms beneath mine. My legs felt like Norman Troyer’s must, as if every movement they made was for the first time. Water and lavender oil sloshed over the sides of the claw-foot tub and saturated the shag rug as my body sank weightlessly into the bath. In the week since Dr. Sengupta told me about the transplant, I hadn’t bothered to bathe beyond what I could do in the hospital room’s sink. In such a short time, the muscle lacing my flesh appeared to have sloughed off my bones. Ida Mae took the purple loofah from the shelf above the tub and squeezed some of Eli’s No More Tears bath soap on it. Passing it to me, Ida Mae supported my upper body as I ran the sponge over my lower. Droplets of moisture struck the top of my head. I looked up and saw tears falling down Ida Mae’s face even as her features were cast into a mold of fierce determination not to cry.

“You’ll get through it, Rachel-girl,” she whispered, taking the loofah and running it gently across my back. “But you gotta let us carry some of your burden. Your shoulders are too little to carry this all by yourself.”

Just the thought of trying to speak required energy that I did not have to spare. Ida Mae seemed to understand. She bathed the rest of my body in silence, then squirted
shampoo into her hands and massaged it through my hair until I fell asleep with my body nestled in the lavender water and my head resting against the sloped back of the tub.

Ida Mae, at almost sixty years old, must have carried me from that bathtub over to her bed. I do not know how she did it. Even though she is strong and I have lost weight, a body encumbered by sleep is somehow far heavier than when it is awake. But she must have, for this morning when I opened my eyes, the first thing I saw was not my son’s atrophied face or the tubes snaking from his port, but the early spring sun spiraling in through Ida Mae’s curtained bedroom window.

I yawned and stretched, peeling back the covers to find myself garbed in one of Ida Mae’s huge tattered nightgowns. Snuggling deep down inside it like a scared child reassured by the familiar, I pulled the blankets back over my head and slept so hard, I dreamed of magical passenger trains that whisk people to places untouched by fear, disease, or death.

AMOS