Oh Shit, I Spit Out. Then from Some Odd Sense of Decorum I Add, Sorry

The Fighter

Saturday afternoon and I pace the floor, phone in hand, and listen to our son Adam’s pediatrician tell me the results of yesterday's X-rays. Adam, 20, born with spina bifida does not speak. It's April 12th and he's had chemotherapy since Thanksgiving for Stage-2 Hodgkin’s lymphoma. The lymph nodes are shrinking. Only two more chemo sessions left. Everything's been going well until this week when he developed shortness of breath. We visited Adam’s oncologist on Thursday, but his nurse and doctor didn't seem concerned.

“Well, the report’s the same as yesterday,” the doctor says. “The x-rays don’t show any..." she stops, takes a sudden, audible breath "oh, oh no,” she says, “there are spots on his lungs.”

“Oh shit,” I spit out. Then from some odd sense of decorum I add, “Sorry.”

“No, I understand.” Her voice soft, but urgent: “Get him to the ER.” I want to cry, but can’t. I have to get Adam moving, let my husband Pat know what’s happening. “Shit, shit, shit, this is bad,” I mutter and hang up the phone.

“Pat. Pat?” Rushing through the kitchen, I stub my toe on a chair leg.

“Pat,” I raise my voice as I bump into him in the hallway that leads to the bedrooms.

Pat says, turning toward Adam’s room. “What did the doctor say?”

“He has spots on his lungs.”

“What else?“

“To get to the ER right away.”

“Adam’s been lethargic all morning,” Pat says. “He didn’t want to go outside “wouldn’t eat, backed off the sofa during a video to get in his wheelchair, and wheeled straight to his

1 room.” Pat’s voice doesn’t hint at fear, but his unsmiling face tells all as we move to Adam’s room. I shouldn’t have gone out today. He was having short breaths and a low grade fever in at night. I didn’t have to leave.

Adam’s head rests on maroon sheets that accent his pallid complexion. Pat sits on the bed, tucks a thermometer under Adam's arm, and waits for the “chi-chi-chi” alarm. “102 again,”

Pat says. “It’s been up and down all morning.”

Pat reaches for Adam. "Come on, Buddy. Let’s get you in your chair. We’re going to see the doctor," Pat’s voice is even, confident. Adam groans and makes a fist, his sign for “No.” I leave the room; Pat can transfer him.

Spots mean pneumonia? What else? How did this happen? What did I miss? Yesterday we went to the clinic. A doctor listened to his lungs, heard nothing wrong, but ordered X-rays yesterday evening just to be safe. Only two more chemo treatments left. Damn! Curses chase my fragmented thoughts. I search the kitchen, family room, living room, bathroom for my keys.

Find them on the sofa under my jacket. I pull Adam’s parka from the closet.

“We NEEEEED to get going,” I yell. I walk back to Adam’s room to find Adam, thumb in mouth, lying in bed, alone. “Pat, where ARE you? We’ve GOT to go.”

“I thought I’d give him a little time. I’m getting his stuff ready.. Maybe you can persuade him.”

I take a deep breath. Of course…Adam needs things besides his parka.

“His backpack's next to the back door. It has catheters, lubricant, paper towels, and juice.”

I edge onto the bed. “Come on, sweetie, let’s go.” Adam groans. “We have to get to the hospital.” He pushes me away, and crawls deeper onto the bed. I glance at the walls, at the

2 framed award from Camp Ability for Coolest Hair. Now Adam’s head is pale with patches of stubble. I move closer; he slides away.

Adam’s resistance throws me. His life's been built around hospital visits; he’s used to them, and willing to go when sick. He enjoys the attention. His curly red hair had always invited compliments. His unwillingness frightens me.

I catch hold of his legs to pull him to the end of the so I can help him transfer to his wheelchair. He pulls back. “Adam, it’s important.” He pushes me, clenches his fist into “No.” I insist. His face reddens, then crumples as he begins crying. My heart drops. “Come on, Sweetie.

I have to catheterize you.” I give him a break and prepare a paper towel with lubricant and a catheter.

After a little more struggle for control, Adam gives up, moves to the edge of the bed and grabs onto the wheelchair arm. I support his torso as he swivels into place.

Just when I think we’re finally on our way to the garage, Adam stops his chair. I lean my face onto his head, bereft of red curls, now only warm, pale skin against my lips. I nudge the wheelchair forward. “We have to go.” I punctuate the air with each word to suppress the fear that lurks in me. I won’t shout; it'll scare him. The doctor’s words, spots on his lungs, become a refrain that pulls at me in intermittent jolts.

“We have to go now,” I repeat as Adam’s hands grip the wheels to put on the brakes. He doesn’t want to go; hell, I don’t want to either. “Adam,” my voice cracks, “we’ve got to get going.” I glance at the construction-paper heart hanging from the candelabra light fixture on the wall—Adam’s valentine. Air from the heat register, wiggles the heart. I picture his lungs, the spots, hear the doctor’s concerned voice. I inch the chair forward. Adam's favorite videos—

Chicken Run, Jungle Book, The Rookie—lie stacked near the T.V. How can I get him to move?

3 But I don’t have to do anything. He’s again surrendered and releases the wheels. “Pat, we’re heading to the car.”

Adam’s chair moves over the living room carpet; its softness soaks up some of my anxiety—until we reach the hard brown tiles of the family room, the fireplace, nothing more than an empty, dusty hole in the wall. We've never fired it up. My fear that Adam, curious and

XXXrambunctious, would get too close overruled our dream of using it. “We’re going to the hospital, Sweetie.” I say each word with control that belies my ragged emotions. Why didn’t the

X-ray technicians see the spots yesterday?

After wheeling Adam’s chair next to the van door, I put my arms around him to stand him up and pivot him onto the edge of the van, where he sits. I lift his legs up and in one at a time to settle them on the floor in front of his seat. He then uses the grab bar to pull himself up and onto the seat. I kiss him on the cheek, fasten his seat belt, and get in the passenger seat as Pat starts the car.

On the way to the hospital, I want to yell “shit…damn…how did this happen,” but don’t because I have hope that everything will be okay. After we get to the hospital, Adam is assigned to a room by evening. Pat goes home and I stay.

When the nurse takes his vitals, I try to calm him when he moans and pushes her away.

He’s agitated but not his usual feisty self, doesn’t have the energy to put up a good fight. It’s almost midnight now, and Adam hasn’t yet had his nightly meds; I’m worried about leaving him prey to a urinary tract infection. The nurse is busy, but he needs his medication. I pace the hospital room floor, touch the windowsills, look outside. The long-necked, sodium-vapor street lights stare back. He’s got to be all right. Could the X-ray reports be wrong?

4 The nurse enters. "I'm Hyacinth," she says, a Jamaican lilt softening her voice. She takes

Adam's temperature and checks his oxygen level.

“You’re staying?” she asks, holding Adam's hand. “Why don’t you rest? We’ll take care of him.”

I like her. She talks to Adam, tells him what she is doing, is not dismissive, even though she knows he doesn’t talk. I appreciate that, but my mind focuses on all the hazards at hand. I can’t leave him alone. What if he crawls out of bed and no one notices? What if he throws up and can’t get their attention? He can’t use the call button. Will they remember to catheterize him? Or will they forget if the ward gets busy?

I sleep in a pullout cot next to Adam’s bed. Light slices across the floor through the slats of the window blinds. Adam’s sleep is fitful. His room is right next to the nurses’ station and the voices of doctors, nurses, and aides occasionally drift in. My sleep is sporadic: I wake to adjust

Adam’s blanket, pull it over his feet, check the monitor tracking his oxygen and blood pressure, and listen to the hum of voices in the hall that sound conspiratorial. I focus on the physical things around me to steady myself, to hide from my fear, a jumble of unclear thoughts. He’s safe now, I tell myself.

The spots on his lungs probably mean pneumonia. No doctor has yet confirmed that.

The fear gnawing at me is that chemotherapy has compromised Adam’s immune system, making recuperation from pneumonia difficult. But, impossible? No. My son's a fighter.

Pat arrives early Sunday morning. We hold each other as I tell him about Adam’s restless night. He kisses me. “Go home. Rest. Go to the party you mentioned.“ He settles next to Adam’s bed with a book. “We’ll be okay.” I don’t want to leave, but I’m exhausted from spending much of the night checking with the night nurse about Adam's meds.

5 “Can’t do anything without a doctor’s order,” she said.

I take Pat’s advice and leave. When I return around 6 o'clock, I'm relieved to hear Pat say, “He’s doing better. He ate a hamburger.” That’s good, since he ate little on Saturday. “And his fever's down.” The news encourages me. Pat has to work in the morning and I don’t so he goes home.

Later that evening a respiratory therapist enters the room. "His oxygen saturation is low," she says. Oxygen hisses into the air as she attaches tubing to a wall tap. She fits a mask onto

Adam’s face, but he pulls it off, pushes her, and moans. I hold his hands still. “You need this,

Adam. Sweetie, please. It feels funny but it’ll help you breathe.” God, I wish I could breathe for him.

At night I overhear Adam's name and snippets of conversations from the nurses' station:

“oxygen level”; and “needs respiratory therapy”; and “has pneumonia”; and “looks like pneumonia, but not responding to drugs normally used”; and “his kidney function kinda low”; and “maybe, bacterial infection”. Early Monday morning, the chief resident decides to order him a C-Pap machine.

At 5 A.M. a respiratory therapist takes Adam to set up the equipment in another room.

“You don’t have to be here," he says. He must have noticed the dark rings under my eyes.

”There’s really nothing you can do.” His tone, not harsh but compassionate. “While I hook up the apparatus, you can rest in the lounge down the hall. Someone will get you when we’re finished.” I kiss Adam’s fingers before leaving.

The next thing I know the chief resident has come into the lounge where I’ve dozed off.

Her touch is gentle, but makes me jump up. “Have you ever spoken to your son about his

6 wishes?” Her words are soft, but intrusive and make me angry. I look at her stunned, still only half-conscious. What is she talking about? My son? She's confusing me with someone else.

“You’re Adam Quigley’s mother?” I nod. I know that “someone’s wishes” is code for pulling a plug or an intubation. I glare at her. I want to yell, Haven’t you read his damn chart? He doesn’t speak. She says she needs authorization, needs papers signed because Adam needs to be sedated for an intubation.

If I say a word, I’ll burst into tears. I hold my finger up in a “wait-a-minute” gesture, bite hard into my lip, and dial my husband’s cell phone. "Pat, talk to the doctor,” I burble and hand the resident my cell phone. “Talk. To my husband.”

After the intubation, Adam lies in bed in an ICU transition room, a plastic tube hanging from his mouth, lax from heavy sedation. I didn't witness the procedure, which I’m sure was difficult. I couldn't have helped if I had stayed. I sit next to Adam's bed and hold his hand. I’m lost, don’t understand what’s going on, am frightened. Who can I talk to? Nurses and doctors come and go, check the monitors to read his blood pressure, his oxygen levels, his heart rate, check his I.V. bag, his medications. The day nurse assures me that Adam will be a more responsive when some of the sedation wears off. " The heavy sedation is necessary for the intubation," she says, “without it, some people actually try to pull out the tube,” then states the obvious, “Not a comfortable situation,” as she glances at Adam.

The room is nothing more than a holding pen with monitors, a rolling tray with Kleenex, and a pitcher of water. A candy-striped privacy curtain hangs from a silver rod. It's where a patient is stabilized and then transferred to another room; or, taken away on a gurney covered with a sheet.

7 Pat arrives, eyes red, cheeks wet with tears. “I was on my way to work when you called.”

Both of us are too sad and frightened to do anything other than hold each other. We stand on opposite sides of Adam's bed stroking his head, talking to him. "We're here, Buddy," I say.

"We're staying," Pat says.

Our friend Kim comes to visit Monday evening and brings a silver Mylar get-well balloon. She talks to Adam, and his eyes slit open, something he hasn’t done since before the intubation. He’s fighting the sedation, trying to see her because he recognizes the voice of someone he knows and likes.

It’s Tuesday and Adam’s been transferred to the ICU ward. We bring him several favorite videos: The Rookie, Shrek, Angels in the Outfield, Eldorado; as well as CD’s he’s listened to at home: Patsy Cline, NSync, Ray Charles; and two favorite classics: Vivaldi’s Four

Seasons and Mozart’s Eine Kleine Nacht Musik. But no Bob Dylan, the only pop singer to make him wail inconsolably.

I walk the corridor outside his room while doctors and a nurse examine him. The rooms I pass are busy with beeping monitors. The odor of antiseptic mixes with the cleaning fluid of recently mopped floors. I wait for the doctors to finish in Adam’s room, to talk to me, tell me what they think is happening. The nurse leaves the room. “It’ll be a while yet.” She checks her watch before adding, “You could take a break, go to the café.” She walks toward the nurses’ station. “After the doctors finish in the room, someone from radiology will take him downstairs for a CT scan and an X-ray. So you have some time.”

She sits down at her desk stacked with patients' charts. Other nurses, doctors, and aides mill around the nurses’ station. A hub of activity: talking on phones, leafing through charts,

8 writing notes, and consulting with each other. Everyone busy, something to occupy their time and minds, unlike me.

I don’t feel like going to the café, but there is nothing for me to do here while the doctors examine Adam. I want to talk to him, see him smile, hear him laugh, ask him which video or CD he wants me to play.

Later that evening the attending doctor tells us that he isn’t sure what’s going on, that

Adam has an infection the doctors can’t pin down, that they were trying different antibiotics.

“Sometimes,” the doctor says, “the lungs freak out, go into shock and start filling with fluid.”

He adds that some people pull through this, but Adam’s liver and kidney function numbers have dropped today, and his blood pressure is dangerously low. The doctor lowers his head and slows down. "Your son has about a 30% chance of surviving this." He reaches for my hand, makes eye contact, and says, “I’m sorry.” After he leaves, my heart dives when the nurse says that, given her experience and the fact that Adam’s organs seem to be shutting down, "His chances are more like 10%."

Pat and I walk along the hospital corridor while the aide and nurse change Adam's sheets.

“Pat, we have….to decide…what…we’re going…to do...” I stop for a breath, “if something happens.” I don't use the word “die,” but the words, “something happens,” get my tears spilling.

Pat holds my hand, and takes a breath. “I know.” He stops for another breath. “I know.” He looks hard at the floor. “I’d like to have his ashes near me.” I squeeze his hand and nod. “Me too.”

The hospital chaplain speaks to us, and arranges for a priest from a nearby Catholic

Church to come and give Adam what I mistakenly call Extreme Unction, or the Last Rites. It's now called the Sacrament of the Sick.

9 On the heels of yesterday’s bad news, Wednesday comes with the doctor’s careful smile and the greeting, “It’s a miracle.” He says Adam’s liver function is up (the doctor finds this amazing), his oxygen levels are better; the doctors might wean him from some of the blood pressure medication, and will confer with the kidney specialist to decide if Adam’s system can handle dialysis; they can also ease up on his sedation. Our hope rekindles.

I sit at Adam’s bed telling him what I’ve done earlier that day, that I stayed overnight with him, that trees were blossoming, that I heard a mourning dove the bird I used to imitate to make him smile, that his hair was growing back, that I had a salad for lunch. “You know,’ I whisper in his ear, “I love you.” I stroke his fingers. “I’ve always loved you: when you were swimming inside me, when you were a little guy, when you got bigger and harder to handle, and even when you were a pain in the ass, I loved you.”

The attending nurse tells me about a girl she cared for who was in a coma for months, not just sedated like Adam. She eventually came out of the coma, and to the surprise of her mother and the doctors, was able to recount in detail much of what her mother and others were talking about while she was “unconscious.”

I'm not the only one to speak to Adam. The attending doctors and nurses do, as well as everyone who comes in contact with him. They tell him what they're doing or what they're going to do, especially when they have to touch him. They don't objectify him.

When I sit in Adam’s room and hold his hand, beeping and buzzing machines surround me. During past hospital visits these sounds tickled Adam and sent him into giggling fits; I miss that. His voice and stubborn will is nowhere to be found in this room. He lies quiet and relatively motionless.

10 Cards from his classmates, teachers and aides at Molloy, together with photos of him and friends cover a bulletin board facing his bed. I talk to him about all that’s there.

Two and a half weeks have passed since Adam was admitted to Evanston Hospital. When we aren’t in his room together, Pat and I take turns going back and forth from the hospital to home, from home to the hospital. Adam was moved from a windowless room to one with a window that faces his bed. The fresh air and open space minimize the cloying ICU smells— alcohol, cleaning fluid, feces, fried food. Grass is sprouting outside, not unlike the stubble on

Adam’s chemo-ravaged head. Crocus and dandelions are pushing up from clumps of dirt. Signs of rebirth, regeneration? The daylight shining into the room offers relief but it saddens me that

Adam, now under heavy sedation cannot see outside. Sounds, smell, and touch he still has, but the medication has robbed him of sight.

At times, Pat sits next to Adam's bed, and laughs out loud as he reads passages from

Huckleberry Finn, the book Gary, his aide, was reading to him at school. Pat or I offer to play a video. And he is still able to sign a weak but clear “yes”. It doesn’t matter that his eyes don’t open; he knows the stories backwards and forwards, as do we. He can listen and imagine the scenes.

On Sunday afternoon I ask, “Do you want us to play The Rookie?” He lifts his hand and points a finger to his side, a frail version of his open-handed slap to the chest to say “yes”. I begin to realize then that the little strength he has is winnowing like sand through fingers. When

I hold his hand, it immediately falls out of my grasp.

That night the nurse tells me to go home and rest. “You’ll call me if anything happens? If things change?” I hate leaving him, don’t want him to be without family near, but I'm exhausted.

11 When I get back on Monday morning, his heart rate and blood pressure are at risky levels. On Monday, Tuesday, and Wednesday, friends and family come to visit Adam, talk to him, hold his hands, kiss him.

On Wednesday morning we watch, even glare at the monitor tracking his vitals. Pat and I stand at either side of his bed. We hold his hands, and tell him about the weather and the cards that people at his school sent when we notice the sudden change: his heart rate and blood pressure numbers look good; so do his oxygen levels. “My god,” Pat laughs. “His stats are better than mine.”

At that moment we both believe that Adam will pull himself out of this morass of illness.

He is strong. He's always been a fighter. He has a good chance of making it. So we float on a surge of hope until his stats change: heart rate and blood pressure move back up; oxygen level slips down again. Everything stabilizes at those new stats for several hours.

We wait and watch the screen as nurses and interns come in and out of the room to check the monitor, change the I.V. bag, take his temperature. Nothing much happens until once more

Adam’s stats take a turn for the better and re-ignite the optimism of his first rally. We're giddy with anticipation. The nurse attending is surprised, and not surprised. “Even people in comas respond at times to the voice of loved ones,” she says.

Our friends, Kim, Jesse, Teddy, and Cynthia visit in the evening. Cynthia has brought a small white teddy bear, which she lays next to Adam. Jesse is making small white cranes to put near his bed. Pat and I take turns telling him who's there and what they've brought him. The promising stats remain for a while then change again and take another turn for the worse. But, two rallies? He's fighting.

12 A third rally comes. Is Adam struggling to stay with us, with everyone there? His stats again begin to stabilize.. We relax a little. Pat stretches out and rests on a chair near Adam; I go to the lounge hoping to lie down and nap. After about an hour of fitful sleep, Jesse taps my shoulder.

“The nurse sent me to get you.” I jump from the couch. “Adam’s blood pressure is falling,” she says as we hurry through the ICU doors and down the corridor past nurses and doctors. His heart rate has shot up while the oxygen has fallen precipitously low. It is about 2

A.M. Jesse and Kim are getting ready to leave; Cynthia, Teddy and Bob left earlier.

I stare at the monitor as if my eyes, my heart, my hope could change the numbers, which have settled at a low for Adam’s oxygen saturation, and a dangerous high for his heart rate.

Pat and I take up positions at the sides of Adam’s bed and hold his hands. We talk to him, hope our voices and what we are telling him will help. We watch as his heart, blood pressure, and oxygen rates move slowly, but steadily away from the possibility of recovery.

I grip Adam's hand in mine as if I can stop this descent, can keep him alive. “I. Love.

You. So. Much.” The words choke out in hiccupping sobs.

“Marcia, don’t,” Pat says, laying his hand on top of mine, “you’ll scare him.” I inhale deeply to quiet myself; tears fall as I listen to Pat. “We love you, Buddy.” He caresses Adam's head and says, “Just try to relax now, and take a nice long sleep.” Both Pat and I stand next to the bed until the nurse points to the monitor. The heart rate reads "0". Nothing left, except for the respirator pumping air in and out of his lungs. “We should take him off the respirator,” she says.

I make a weak nod. My boy, my baby has nothing left to sustain him. The nurse loosens the tracheotomy tube, sets if off to the side, then rests her hand on my shoulder as she walks me to a chair next to his bed. She faces both Pat and me, “You can stay here with him awhile.”

13 We remain next to Adam's bed until the nurse and an aide come to remove the I.V. and other tubes, and to clean him. We wait outside until they finish then go back in and sit on either side of his bed for a while. Just before we leave for the night, I stand at the end of the bed. I don’t know why, but I lift the cover to look at his legs, his feet—so white, so so still, so vulnerable. I lean hard against the bedrails' cool metal supports and let tears fall.