Read an excerpt from my book!

The following is an excerpt from my memoir, "When and Always: Distressed Love and the Art of Randomness," rep'd by Kimiko Nakamura of the Dee Mura Literary Agency, currently looking for a publisher.

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Chapter 6: Nine Hours, Eight Minutes

“You sure could use a haircut, bud.” Donnelle fiddled with Mike’s hair, knocking his hat askew. Mike rolled his eyes. “It’s fine, Mom.”
“It’s getting pretty long.”
He chuckled dryly. “They’ll probably shave it off on Tuesday.”
Mike’s parents, my mother, Carolyn, and Miriam were spending the weekend with us, browsing comic book shops and eating stir fry as though we were on vacation. It was the first time in almost two days that anybody had actually spoken about Mike’s upcoming surgery.
Miriam snorted. “You’ll look like Stone Cold Steve Austin.”
“I’m sure they’ll be able to do it without shaving your head,” Donnelle went on.
“Really?” Mike sounded hopeful.
“Sure thing, bud,” Tom answered.
“Well,” Mom added, “I think you’d look handsome without any hair. So it’s a win-win.”
“There’s a lot of folks who want to be here, Michael,” Donnelle shuffled conversation topics like a Blackjack dealer, with finesse and a total lack of subtlety. “David and Robin want to come up, they’re so close by anyway, and Dad and Barb.”
Mike nodded and sighed. “It would be really nice to have Grandpa there. And Dave.”
“Neil and Shelli might come, too.”
“That’s a lot of people, Mom. You can’t invite all the aunts and uncles. That’s, like, a hundred people.”
“I know. But they want to come.” Her voice was flat, nasal as she fought to keep tears from rising through her words. Mike put his arm around her.
“Thanks, Mom.”
On Monday morning Donnelle cleaned the house. Mike and Tom got haircuts, and I put together Mike’s insurance information. Already bills were coming in from the hospital. It was clear Mike’s HMO wasn’t going to be happy about paying for surgery. I took a break from writing petitions to customer service to update my blog about Mike’s surgery, in case our family and friends wanted the information. Within seconds their emails appeared, asking me to pass along his hospital room number so they could send flowers.
Dad arrived from Michigan, and I hid in the kitchen as Mike’s relatives filtered in. We ate and drank until the hour came for Mike to fast- no food for twelve hours before surgery. I felt overwhelmed and disoriented, dwarfed. The family drifted out of the house, promising to meet at the hospital in the morning.
After we went to bed, we lay in the dark, listening to the hum of the ceiling fan. I knew he was awake by the unnatural quietness of his breathing, and when I finally couldn’t stand the weight of the silence I whispered towards the ceiling.
“Are you feeling okay?”
He sighed loudly, as though he’d been holding his breath. “Yeah. No. Mostly.” He rolled over and put his arm across my stomach. It was warm and soft, and at the feel of his skin against mine I felt my tension start to ease away. “I feel a little weird. I think the medication is messing with me a bit.”
“The Dilantin?”
“Yeah.” He sighed again, kissing my shoulder, and rolled away agin. “I just feel… I don’t know, weird. Sort of like my whole body is kind of… off.”
“You sure it’s not nerves or anything?”
He squeezed my fingers. “I guess it could be, subconsciously. But it’s worse after I take the pills, and I took them right before bed.”
“There’s got to be a different anti-seizure drug. If you don’t like it, I bet you can switch. I’ll make sure to tell Dr. Talbot.”
“Is he in charge of that stuff? Or is it Dr. Graves?”
“Ugh, that name!” I hid my head under the pillow. Mike laughed.
“I know! What kind of guy goes into oncology with a name like that? Dad and I were joking about it at the barber shop.”
“My dad should have gone with you. He always needs a haircut. And he’s always good for a bad pun. Actually, I think our dads would get along pretty well.”
Mike propped himself up on his elbow.
“We should take all the parents out together. To do something fun, I mean.”
“Like what?”
“Let’s take them to see Wicked.”
“Ooh! My parents would love that!”
A memory of the drive to the hospital rose, Elphaba singing, the futility of her love story. I turned to adjust my glasses on the nightstand to hide a flinch.
Mike dropped his head back to the pillow. “We can take them to dinner, too. To Petterino’s. Let everybody have a really good time.” 
I breathed slowly, felt the wave of panicked memory recede. “Perfect.”
Mike grinned and kissed my fingers, and we lay in silence for a long time.
“Lea?” He didn’t need to ask if I was awake. “What do you think they’re going to find?”
I held my breath, not wanting to acknowledge the answer. I pictured the white shapes on the MRI, like clouds I could lay back and find benign shapes in.
“Oh, it could be anything.”
“Like what?”
“It could be scarring. From banging your head on doorways too many times.”
He chuckled. “Yeah, that is a hazard of being freakishly tall.”
I rolled over and grinned. “What if it’s an alien implant?”
“What would it do?”
“I don’t know. Make a giant satellite come out of your ear?”
“You’re thinking of anal probes.” He snickered and pulled me into a hug.
“Right, sorry.”
“I think it’s a government implant. To listen in on me and turn me into a covert spy.”
“No, if it’s a government plot it’s probably a prototype for an elixir that will turn you into a superhero.”
“Only if the surgeon activates it properly.”
I shook my head, picturing Dr, Talbot looming over Mike with a silver tool in hand, adjusting the controls of a blinking device. “Maybe it’s an alien fetus.”
“And it’s growing into an adult alien, and that’s why it’s causing problems now?”
I laughed. “But it’s a nice alien, not like the Independence Day aliens.”
“So I have E.T. in my head? And the seizure was his way of phoning home?”
“Exactly.”
Mike began laughing again. “I bet it’s a pet rock.”
I snorted and kissed his chest. “You are awfully dumb.”
“I know. You only keep me around for my looks.”
“Can’t argue with the truth.” I traced my fingers down his muscled arm, up his side under his shirt. “No, it’s a government implant. They’re trying to figure out how somebody can be so brilliant, so they put a transponder in your brain to send out signals about what you’re thinking.” I tried to will myself to believe it, and felt ridiculous.
“You mean they’ve been listening in on everything I think? For how long?”
“I don’t know.” I buried my face in his chest, and he ran his fingers through my hair, winding them in my curls.
“Then they’ve probably heard a lot about how amazing you are.”
I hugged him tighter and my body threatened to dissolve into tears. I wished I could melt until I was nothing but a shield over his body.
“Shucks,” I drawled sarcastically. “That’s sweet.”
“You’re kind of the only thing I think about.” He divided my curls and pulled them over my shoulder.
I tried not to imagine how long it might be before we could lay in bed like this again. Not to think of the word if. “You’re sweet.”
He kissed the top of my head, and I felt his hand against my scalp, warm and calloused. I pressed my ear against his ribs, listening to the rhythmic pounding of his heart. I lingered, trying to commit the sound to memory. It almost sounded like the pounding of a river against jagged stones, as though a rapids were threatening to surge.
“I love you, Lea.”
I sighed, listening to his heartbeat. Strong, even.
“I love you.”
I clung to him, and the ebb and flow of his heart carried me to sleep.

7/10/07
Brain surgery update
I'm currently sitting in a private waiting room at Northwestern Memorial Hospital in Chicago. Mike is just going in for surgery. Contrary to the previous decision made by his medical team, they will be performing two procedures, and the whole operation should take between 3.5-4.5 hours. They will first be taking a biopsy with a needle from a calcified mass deeper in his brain, and then excising 60% of the remaining mass, much closer to the surface. I'm writing on Miriam's laptop, and the room is about half full of assorted Borensteins and Grovers.
Mom and Dad are in town for the surgery, as are Mike's parents (Tom and Donnelle), his sister Carolyn, two aunts and uncles (a set from each side), and Mike's grandfather and his wife.
Mike is very confident, as are all of his doctors. It turns out that a friend of his from college is a neurological intern here, and will be observing the surgery, so he's got a friend on the inside to keep an eye on him.
I'll be sure to let you know as soon as anything happens.

Our waiting room was through a door off the surgical lobby. It was large enough to feel eerie with twelve of us inside. The walls along three sides were lined with couches, arm chairs, and circular end tables. A windowed wall faced a skyscraper with an Elephant and Castle sign, large tables with chairs stood against the glass.
The upholstered furniture dithered between mottled earth tones and the smooth blue of the floor. Beige walls reflected the taupe in the end tables and absorbed the harsh fluorescent light. Framed watercolors of wildflower gardens adorned the walls. The room seemed to say, “You don’t have to worry about a thing.” The air was thick with the shadows of occupants past; a stream of nervous tics and ritualistic pacing bled from the serene blue carpet.
A wheat colored telephone sat on a round end table- our link to the operating room. When something happened, they would call on that line.
I curled into the arm of the largest couch, directly beside the phone, staring at it while everyone made themselves comfortable. Miriam sat beside me.
“Lea, maybe you should look somewhere else?”
I wrenched my eyes away and looked straight in front of me. There, mounted to the wall, was a clock.
I stared at it, the jerking motion of the second hand crossing the four. I stared back at the phone, noticing the bolts attaching it to the table. I looked back to the clock.
My stomach twisted into knots. Shelli suggested I choose another seat. I bit my lips and shook my head. Every few minutes, my eyes drifted back to the clock.
Ten minutes, he’s probably asleep right now.
Seventeen minutes, they’re probably through their checklist, know which is the right side.
Forty-two minutes. They must have opened him up. They’re already watching his blood pressure, cutting through his skull…
After eighty-one minutes, the phone rang. I snatched it to my ear with its first chime still hanging in the air. A cheerful voice told me there had been a few delays. I listened for a moment, and hung up to face the twenty-two eager eyes before me.
“What’s up?” Donnelle asked, her tone cheery and artificial as she crocheted without a glance towards her hands.
“They decided to make some changes to the surgery. They talked to Mike about it, and they’re not going to remove any of the larger mass. Just biopsy it,” my throat dried more with each word. “They’re ready to begin the surgery now.”
A collective groan filled the room and I felt my eyes burn.
The hours stretched past noon, and Mom brought in pizza. I tried to watch Quantum Leap with Miriam on her laptop, but didn’t take in a word. Donnelle chatted with her brother and father. Tom and Carolyn laughed quietly. Mom and Miriam compared Harry Potter notes. Dad read clips of the day’s news aloud, failing to distract me from my view of the clock. I ate the pizza, watching the shadows of the city lengthen over the lake, watching as twilight set in.
The phone rang again, bringing instant silence in its wake. I forced myself to move slowly as I lifted the receiver to my ear. I listened for a moment, then hung up the phone.
“Mike’s surgery is over. He did great- no complications. They’re closing him up now. Dr. Talbot will come to tell us what happened.”
Everyone smiled, then returned to their conversations with a little more laughter. I felt dizzy. I took a deep breath, glancing again at the clock. Nine hours, eight minutes. And counting.
It was nearly an hour before Dr. Talbot came through the door in scrubs and a white coat. I scanned every inch of his wide frame, looking for a hint of Mike’s blood. He smiled.
“The surgery went well. He didn’t have any complications- his heart rate was great, there were no problems with his anesthesia, and he should be ready to see a few of you in the recovery room soon. But first, I’d like to talk to the parents and fiancée. Just for a moment, in private.”
I stood and the world became hyperreal, electric. I knew there was news. I didn’t want to hear it. I needed to hear it.
My body was floating, I had run a marathon straight up into the air and arrived in space. Or I’d died and left my body back in bed, curled around Mike in our jersey sheets.
I was too comfortable to hurt. Too vacant to feel.
Dr. Talbot led the three of us to a consultation room. Two chairs, a love seat, and an coffee table with a box of tissues on top, crammed into what most Chicago realtors couldn’t justify calling a walk-in closet. Tom and Donnelle squeezed onto the couch and I sank into my seat, feeling as though the air was heavy, pressing me into the chair’s wooden frame. Dr. Talbot perched on the arm of the other chair, as far away from the three of us as possible in those cramped quarters.
I looked at his knee, stretching his blue scrubs. His hands on his thigh. The hunch of his rounded shoulder. Tension. Trepidation. Resignation.
In a rehearsed voice Dr. Talbot walked us through the surgery. How instead of removing any substantial amount of the masses, they had taken needle biopsies. How they left open the option to excise more later, if possible. How Mike remained stable, how his breathing had been unaffected, how his heart rate remained strong.
In a clear, practiced tone he told us that Dr. Graves performed smear tests to identify the masses.
“Dr. Graves’s diagnosis of the smaller mass is that it’s an overt infiltrating anaplastic astrocytic glioma, small-cell cytophenotype with conspicuous microvasculature. The second lesion is a diffuse glioma, a solid tumor, predominantly small-cell cytophenotype.”
He stared at us for a moment. The only word that had infiltrated my brain was tumor.
“That probably sounded like Greek to you, I know. That’s what it is, Greek and Latin, and you’ll be able to look all of that up later. This is an extremely aggressive tumor, but the good news is it’s only after astrocytes, so it can’t metastasize anywhere outside of the brain. The tumor’s blood supply is problematic. If we cut into it, he’s going to start bleeding and we won’t be able to control it.
“This is an extremely aggressive glioma. You need to understand that. The stage two has probably been there a long time, which means it’s likely that the stage two is the primary tumor, that’s usually how these things work.”
Tom tried and failed to clear his throat. “What’s the prognosis?”
For the first time, Dr. Talbot paused.
"Sometimes,” he said, “you see patients five years out. Sometimes. Not often. You shouldn't expect that.”
In the ringing silence, I felt my head spin. Tom’s voice croaked out again.
“How long?”
Dr. Talbot looked as though he wanted to take off his glasses, wanted to do something with his hands. Move them off his knee. He didn’t.
“With this advanced stage of the cancer, with this sort of placement... many patients have about eighteen months. Maybe less. Maybe as much as two years. But,” he added with a shrug, “Michael’s pretty young. He’s healthy, otherwise. You usually don’t see this kind of cancer in younger guys. I mean, fifty, sixty, sure. But he’s what, twenty five?”
“Twenty four,” Donnelle murmured.
“Twenty four. Who knows? He could be lucky.”
Lucky. The word floated through my ears. Improbable. Impossible. Cruel.
Donnelle said something again, her voice choked with tears. I didn’t hear it. I was still playing through words lodged in my head. Eighteen months, lucky, young, healthy, eighteen months…
Dr. Talbot said something about taking a minute to ourselves before slipping through the door. Tom and Donnelle held each other and wept. I felt the weight disappear as the air left with Dr. Talbot. The room expanded and surrounded me with limitless nothingness. The walls were a million miles away. 
Tom’s voice sounded husky and raw as he offered the box of tissues. “We have to go tell the others. They’re waiting for us.”
I took one and dabbed my eyes. Why are they wet? Why is everyone so sad?
I followed Donnelle, seeing each of her golden hairs in perfect definition. I had become a ghost, drifting behind her. The remnants of my body were dissolving, recombining with oxygen and dissipating into air passing through me. By the time we reached our room all that was left of me were the soles of my feet, misinforming my few remaining neurons that a body still walked, breathed, shivered on the blue carpet.
We stood inside the door, and I braced myself against the arm of a couch, staring blankly past each expectant face. Barb’s expression, etched with trust. Neil’s eyebrows raised, mouth slightly open. DeLloyd, inscrutably calm behind his pastor’s persona. Miriam, her eyebrows slanted towards her nose.
Tom began explaining. The words “aggressive glioma,” and “microvasculature” crawled out of his mouth. They sounded wrong, impossible.
Donnelle took a deep breath. “It’s cancer, and it’s really tough.”
The pitch of her voice rose until she pinched her lips against the tears. I looked at the faces of Mike’s family, my family. They were waiting for the good news that must come after so much bad. An annoyance rose in me at their ignorance.
“The prognosis is eighteen months,” I monotoned. Donnelle wailed as the words left my mouth. They sounded callous, incriminating. I felt everyone must hate me for speaking them. I hated myself. I looked up at the room and it disappeared, leaving behind a fictional new world.
Everything was flat and made of thick, heavy glass. Nothing that happened mattered. I was on one side and the rest of the world was smooth, soft, sun-worn; like the bear enclosure at the Lincoln Park Zoo. Distorted enough that you could press your face against it and still be unsure of what you saw. Hugs, the tears on someone’s shoulder, the hair on the back of your father’s hand swinging helplessly at his side… it could all be a lie.
There could be nothing on the other side of the glass.
My mind reeled as I searched for anything both real and good. Something I could cling to. But my head was full of bees, lazily buzzing after the queen had died, trapped forever in this glass block sitting under the sky.
I stared at the spot on the floor where my feet had rested for so many hours, as though a keyhole might open up and I could peer into a universe where there was no waiting room, no weeping family. I could feel them, against the carpet. My immobile feet… those were real.
Mike’s grandfather prayed, a thrum of words as indistinguishable as they were irrelevant. People reached towards me. Barb, her face contorted, gestured me into a hug without meeting my eyes. Trying to let me know I was part of the family. That I was included in their grief. That I was one of them.
Her arms closed around me as she whispered in my ear. “I am so sorry, honey…”
My feet sent signals to my phantom limbs, You still have a body. Without thinking, I patted her on the back. The carpet shifted beneath my toes as I leaned against her, my feet told me the pile bounced back. You still have a voice…
“It’s okay, Barb, he’s going to be fine.”
The words echoed out of the emptiness. Is that me? I rocked back on my heels, the carpet cradling me.
Barb gave me a look of pity, but as I stared back something changed. I caught fear in her eyes, as though she saw something hard in me, something dangerous and jagged. My elbows were its corners, my jaw and shoulders and ribs exposed and treacherous. My body began to reform around the sharpness. She nodded silently and stepped away.
Robin was next, crying on my shoulder.
“Sweetheart…”
“He’s going to be fine, Robin.” I pulled the words across the flatness of the world, I gave them a shape. Dark, but firm. I felt the hum in my head organize itself, finding its purpose. “He’s going to be just fine.”
Is he?
Yes, I told myself. If you believe it, if we all believe it… if he believes it… yes.
I walked up to Donnelle, crying in her father’s arms. I put my hands on her shoulders and waited for her eyes to find mine.
“Oh, Lea…”
“He’s going to be just fine, Donnelle. He’s going to be fine.” I smiled my face back into existence.
My father rubbed my shoulder twice, a warning. The vibrations in my head grew angry, defensive. I stared at him.
“Mike’s young. He’s healthy. He’s going to be okay.”
I looked into everyone’s faces, and one by one I dared them to disagree.
“He’s strong. He’s going to beat this.”
While Mike’s family prayed, the world became clear again, came back into focus. I said it over and over and over…
He's going to be fine.  He's going to be fine.  He's going to be just fine.

Nobody contradicted me.

3 comments:

  1. Oh my goodness. I just want to read your entire journey. The way you are able to describe it... you are an amazing writer.

    ReplyDelete
  2. Lea, I will most definitely buy your book. You had me completely invested in your story. This is amazing writing.

    ReplyDelete

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