2. England

Here is How It All Begins

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There's a black screen.

Silence.

Colors slowly bleed in from the sides: an out-of-focus jumble of blues and greens and whites. The camera sharpens. It's a panoramic view, a wide countryside. The hills are damp with recent rain. Imagine the video camera slowly panning across acres of vibrant green farmland. Roll soundtrack: low horns and a rippling piano. An old farmhouse passes by the corner of your eye, a long stone wall. A fine mist hanging the air. It is bright but grey.

The camera stops and focuses on a group of white buildings. They poke out of the top of a low hill. They look a little out of place: very modern and angular, surrounded by the rustic countryside, miles of multi-colored farmland and thatched roofs. Zoom in, now, for a better picture of the buildings.

It's a university campus. There is a visible central path, running the length of the campus, like a spinal cord. The buildings close to one another, a compact design. We're at the south end of campus. A long row of windows face west. The camera continues to zoom in, closer, slowly, closer, until the upper two-thirds of the screen are filled by an open bottom-floor window. A shadowy figure can be seen through the curtain. The soundtrack fades back to silence. White letters appear on the screen:

LANCASTER, ENGLAND. FEBRUARY, 1990.

The camera pushes through the curtains. The room is small. There is a narrow bed up against the near wall, and a kind of combination desk/bookshelf/wardrobe on the other, with maybe three or four feet of space separating the two sides. The door is centered in the wall immediately opposite the window. There is a small sink and mirror next to the door, sandwiched in the tiny space between the end of the wardrobe and the inner wall.

It's not a sink you use for cooking. It's much too small for that. Some nights you come home late after drinking with the boys, and you're flopped onto your bed, staring at the spinning spinning spinning white ceiling, wishing it would stop moving. You know you're not going to be able to stumble all the way down to the hall to the common bathroom. The walls would probably be moving side to side anyway. You maybe shouldn't have had those last two or three shots, but the boys were buying, and you were drinking, and now it's a little too late for regrets.

The small sink in the corner is useful for brushing your teeth -- for checking your hair before you go out at night, and for quick showers if you've overslept -- but it's especially useful for emergency late-night vomiting.

In the middle of this small, non-descript room is a young man. He is sitting at the desk. He's leaned the chair back on two legs, so the back rests up against the bed. His eyes are closed, but the leg he's used to push off from the desk vibrates with nervous energy.

This is his room. This is his story.

My story.

I am wearing shorts and a damp sweat shirt. My shoes are kicked into some corner or another. I have just returned from a quick run. There was a narrow winding road that circled the entire campus, just under a mile. Because my window was on the bottom floor, it was a great path for squeezing in a run at any time of the day. Sometimes I'd double or even triple it. Headphones securely fastened, rain seeping into my arms and shoulders, sharp breaths cutting through the mist.

I'm in decent shape. I've been working at it pretty hard since I've been in England, coming up on six months now. I'm not sucking wind, not out of breath, but I'm still wiped. It doesn't make any sense. I'm sitting at my desk, leaning back onto two chair legs, trying to figure out what's wrong.

I'd been feeling down for at least a few days, but probably closer to a week. Nothing obvious, nothing specific, just a generally higher level of fatigue than I was used to. The way it gets late winter when you can kind of feel a cold coming on, scratchy throat, tired eyes and limbs. It wasn't anything that I was prepared to define as a full-on cold, but it was late February, and I certainly didn't have the best sleeping habits, so, I mean, it could have been anything. A warning shot, I suppose, my body telling me to either get some rest or deal with coughing and sneezing for a couple of weeks.

The run was an attempt to chase the oncoming sickness out of my system. Sometimes you can forget about everything outside of the run; there is nothing but the cool pavement and slow breathing. This was to be a show of strength. Look, body, I'm in charge here, okay, and so we're gonna go running tonight, even in the rain, and you're not gonna bitch or complain or get sick. Understand?

But I'm back from the run and I'm still tired and now I'm feeling even crappier than before. I take a look at my legs. Twist them around so I can see the backs. Then I look at my arms and hands. It's not good. I let the front legs of the chair fall to the ground; the momentum carries my arms over to my desk. I grab my journal from the edge.

Here is how it all begins:

I open my journal, flipping through the pages until I come to a blank page near the end. I scrounge around for a pen, then take a deep breath. My eyes are closed. I'm deliberating. Do I really want to write down these fears? To write them down will give them substance, might even make them come true. But not writing them down won't necessarily make them go away.

Sigh. This could go on all night. Eyes open, another deep breath, and then my pen scratches across the empty page.

19 Feb 1990

A bruise on the outside of my right calf; a bruise that swells up around the ring finger knuckle on my right hand; a couple of bruises on the upper back part of both legs; a healthy bruise on my waist where Si Shaw pinched me (at least that one is explainable). A new bruise, strong, on my left foot. Small red spots on both feet that crawl a little ways up my shins. A sore on the inside of my mouth.

I don't know what is going on here, and I'm scared. Not scared enough to go to the doctor and say "oh, look, I've got a bunch of Mystery Bruises," but scared enough to write this down. I don't know. Maybe it's nothing. But my body is falling apart on me and I don't like it.

Shit. This is just for the record: as of 19 Feb 1990 I am frightened because things are happening to me that I can't explain away.

My mind is racing. My heart. Now that I've written it down, now that I can hunch forward at my desk and read and re-read all of these things, there's so much more there than just being tired. I rest my elbows on the edge of the desk, rest my head in my hands.

What if? I ask myself. What if it's this, what if it's that?

I try to think of diseases that would make you bruise easily. The only word that comes to mind is hemophilia. Weak blood or something. I'm not even sure. My legs are still tingling from the run. I rub my hands across the unblemished tops of my thighs. Inspiration comes quickly. I know what to do about the what ifs.

A test.

I could test myself, test whether or not I really have been bruising easily. Simple enough. I push myself back from the desk and stretch out my right leg, making sure to flex. I kind of point my toe. Calf and upper thigh both tighten. See, now, it makes absolute sense to me that I were to punch my thigh several times -- good, hard hits -- and it remains blemish-free, then clearly everything is okay. The journal entry becomes something to laugh about, something forgettable. Ha-ha, stupid paranoid Robert.

If a bruise does form, well, f***. I don't know. Not that it makes a difference. Mind over matter, right? I won't let my body bruise because I don't want it to.

I make a fist. A good one. I focus on a spot on the middle of my thigh, a couple of inches below my shorts. I pound it. Twice. Three times. I use all sides of my fist, pounding with the bottom, then with my knuckles. I crook my pointer finger out in order to make a tiny knob. Again and again, and one last time. It hurts.

Good.

I'm happy.

My leg throbs red. I'm smiling as I stand up, thinking how clever I've been. This will be a good test. One day is the deadline. Twenty-four hours. I will give it one day to turn into a bruise.

After writing down all of my symptoms and pounding on my leg, I thought about going to the library on campus. I could have probably found a book in the medical reference section somewhere. It wouldn't have taken much effort to identify common symptoms to common diseases. Tomorrow, I told myself. You really should go to the library tomorrow.

I'd mentioned this to Dad and Jane. We were on the back porch, a favorite spot, drinking sangria. That was one of the best things about staying with them over the summer: Dad would make fresh sangria. He worked out of the house, and would always find time to dice apples into tiny almost-triangles, mixing good white wine with other fresh fruit. I knew that when I walked the handful of blocks from the bus stop, coming back from whatever mindless temp job I'd worked that day downtown, that there would be a never ending supply. The glass pitcher was chilled and seemed endless. The two of us would sit on the back porch until Jane would come home and then she, too, drank with us. It would be cool in the shade.

I told them about how I'd hesitated. I wrote it down. I knew something was wrong and I knew I should check into it, but I kept putting off even the short, simple trip up The Spine to the library. Imagine if I'd ignored my symptoms any longer.

"Why was I so afraid to admit the obvious? Why was I so afraid to go to the doctor?"

"Human nature," Dad says. He spreads butter on a thin round slice of still-warm baguette. "Most people do not want to face the fact that they are not perfect. It is built into the human psyche. Or maybe just the American psyche. We'd much much rather suffer through x, y, and z before acknowledging something is wrong."

Jane laughs.

"Sounds like a guy thing to me."

I chew on a wine-soaked section of orange.

"Mmm," I say, nodding. I don't know what else to say. This thing that had been in the back of my mind has worked its way to the front. It's the feeling I had after hitting my leg, daring it to bruise. As if I had something to prove to myself, all alone in that tiny concrete room, knowing, absolutely knowing that nothing was wrong with my body simply because I didn't want there to be anything wrong. Why bother going to the doctor when you're so confident of your health?

"Hmm," I say again, closing my eyes, remembering the invincibility of a twenty year-old.

Blood?

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It is Tuesday, February 20th. I wake up around noon, one o'clock. Twelve or thirteen hours of sleep and I'm still exhausted. I don't care that I've missed both of my classes for the day. One of them had been earlier in the morning, ten o'clock or so, while the other started at noon. I should've at least made it to my second class, but a steady fatigue is beginning to set into my body. I keep telling myself that it's just a bad cold. I mean, the start of a bad cold.

I'm lying in bed, warm and comfortable, not quite ready to get up. Where is the harm in sleeping for a couple more hours? Volleyball practice isn't until later in the afternoon. It is tempting, but I force myself to throw back my comforter, wipe the sleep out of my eyes, shuffle over to the sink.

Cold water. Cold washcloth.Toothbrush, toothpaste. Swish. Spit. Blood.

Blood?

Another spit and this time it is all blood, no toothpaste. I pull up the front of my lip and squint into the mirror. Blood is rolling out of my gums, over my top teeth. I do not put two and two together. There is no immediate association between the gums and the bruising. It does not occur to me that there might be a relationship.

My glums bleed all day. They bleed while I eat a late lunch at the JCR. I try to drink plenty of fluids. You are supposed to do that when you are sick. It also keeps the blood from staining my teeth. At some point in the early evening as the JCR begins to fill for pool and darts and beers, I remember to check my leg for bruising. I sneak off to the bathroom so I can spit more blood into the sink. I sit in one of the stalls and nervously pull down my jeans. The light kind of sucks in the stalls, flickering flourescents. I'm squinting as I carefully check my right leg.

There is nothing. The other bruises I'd written about are still spotted around my legs and feet, but nothing has formed where I'd punched my thigh.

Good. Very, very good.

On Wednesday

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It's late Wednesday night, gums still bleeding, a fever creeping in from the edges, all bruised and lethargic. I decide to call home. Laura answers; she's the only one there.

There is not much to say.

I am a little lonely, a little homesick, and that's not the kind of information you necessarily want to offer to your older sister. I'd been out with "da boys" earlier in the evening, Simon, Wayne, Jim, Chris, the five of us moving between a few different pubs, a couple of pints at each. So I'm also a little drunk in addition to all the rest. Because I didn't get the idea to call home until later, and because I wanted to stay up past eleven o'clock to get the cheaper rates, the other thing that I am this Wednesday night is nearly dropping from exhaustion. I can't help but yawn into the phone. I know that if I'm up this late, it's easily three or four o'clock into the next afternoon before I'll manage to get out of bed.

I give Laura the abridged version, the one where I don't share what's really bothering me, why I'm really calling. I tell her about the relentless fatigue, about all of the general, non-specific symptoms. I do not tell her about my many mystery bruises. Even as I lick my teeth and taste more blood, I do not mention anything else.

"I'm just feeling pretty shootty," I say.

She tells me to get some rest. "Drink plenty of fluids, and eat smart. Get some sleep."

"I had mashed potatoes for dinner and beer for dessert. Does that count?"

She laughs.

"Good enough."

I want to tell her more, but not really. I don't want to tell her anything, even though I do.

Insert Irony Here

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We were playing pool, Simon, Wayne, Jim and I.
The JCR was mostly empty.
The four of us, a few other people standing around.
Kristi sat on the couch, reading. She looked up occasionally.
We were playing doubles, I think, or maybe we used both tables.

Wayne had a tape that we used to listen to,
after we'd come home from drinking.
It was Peter Cook and Dudley Moore
doing an improv radio show in their alter-egos,
Clive and Derek.
What made the tape so funny was that they were drunk, too.
They did the show while they were hammered.
So we'd come stumbling across the square at Pendle,
drunk, bumbling into Wayne's room,
and we'd listen to the tape,
crying, sometimes, from laughing so hard.

One of the funniest parts of the tape
was when Clive and Derek would talk about various
cancers that they had,
outdoing one another as small children might.
"I've got cancer of my overdraft,"
"I've got cancer of the mortgage,"
"Well, I had cancer before you did,"
"I had cancer before I was even born,"
"Yeah? I have cancer of infinity, and I had that
before I was born which was before you."
And so on, laughing,
making light of a serious subject.

During our pool games, then,
not many people around,
we kept saying "I've got cancer of that shot,"
or "I've got cancer of the pool cue,"
or "I've got cancer of your face."
It was funny.
We laughed until we cried.

my gums had been bleeding for three days.
i had been sleeping twelve to fourteen hours a day,
but still awoke exhausted.
the ring finger knuckle on my right hand
was lost in a bruise.
i kept drinking my beer, as we were playing,
so that the blood would wash off my teeth,
so that i could smile and laugh with everybody else.

I leaned against a pinball machine, tired.
Kristi sat on the couch, not really reading anymore,
watching us play pool, listening to our jokes.
"That's not funny," she said,
as we laughed about Jim's cancerously bad shot.
"That's not funny at all. There are people with cancer, you know. It's not a funny thing."
"Bollocks," Wayne said. "I've got cancer of their cancer."

We all laughed and smiled
and i cleaned my teeth with my tongue, first,
so that the blood wouldn't show.

He Wakes Up Twice During The Night

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He wakes up twice during the night.

The first time he is shivering. His comforter is tucked underneath his neck; his knees are balled up around his chest. And still he is freezing. Goosebumps raise the hair on his arms and legs. The second time he wakes up, the comforter has been thrown to the floor. His shirt is damp from all the sweat. It is a restless night. His mouth is dry when morning finally comes.

The bathroom is down the hall, next to the kitchen. It is early Saturday morning, and none of his floor mates are up yet. He walks down the hall in his underwear and a long white tee-shirt. He stops in the kitchen first, thirsty, digging through the small fridge for some of his food. There's half a bottle of orange juice in the crowded door. He finishes the bottle.

Outside, the morning drips wet and grey. The skies are heavy with charcoal clouds. Winds blow down from the north.

He rinses out the bottle, sets it upside down next to the sink, and smiles.

"Today," he thinks, "is the day I will get better. A perfect day to stay inside and slurp chicken noodle soup and drink orange juice and just rest. A perfect day to mend this battered body."

The air is crisp and clean. He takes a deep breath before walking back into the hallway.

And then he is in the bathroom. He is still tired and feverish, a little wobbly standing above the toilet, but even still it's impossible to deny what he sees: his urine is bloody. No, that's not an accurate description. It's not so much that his urine is bloody as it is that he's just peeing blood. As far as he can tell there's nothing but red coming from his body. The toilet water swirls red.

He shuffles slowly back down the hall. His left hand drags against the wall. Inside his room, he locks the door so that no one can bother him. He checks his clock before slumping back down on the bed: 7:52 AM. He tries to remember what he could have possibly done the day before that would have made him so utterly exhausted. There is nothing. He wipes his teeth on his tongue and tastes blood. He swings his legs under the comforter and closes his eyes.

"I will do something about this," he says to the wall. "I will get up and do something as soon as I sleep a bit longer."

This Is So Very Wrong

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I wake up again a little after noon. My window is fogged up. I open it about halfway and smell the cool air, thick and wet. There is a steady, refreshing drizzle. On my desk, next to the window, is a crowded jumble of papers and books, pens, empty coffee cups, loose change. My journal is slim and black. It rests on an empty corner of my desk. I lean up against the windowsill and thumb through my journal. I'm looking for the last entry, about three quarters of the way through the book. I'd written a note to myself, not even a week ago, a list of symptoms that I was ready to ignore. The early morning memory of blood-stained urine is strong as I re-read the entry.

This is wrong, I tell myself. This is so very wrong.

With that, I am out the door, walking back down the narrow hallway. I'm still not convinced. There is one simple way to prove that it was a delusion, the bloody urine, earlier this morning. My bladder burns from the half-bottle of orange juice. Without question, I tell myself as I stand above the toilet, definitely, absolutely, if this is bloody again, then I will go to the infirmary.

Bloody it is. More blood than anything. As if I'd swallowed red food coloring by mistake, as if the whole thing was some elaborate practical joke. There is no pain. It does not sting or burn. But blood pours out of my body in a way that it should not.

A Lonely Walk

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I stalk back to my room and pull on a pair of sweats. Most of my clothes are dirty. Rooting through the pile on the bottom of my closet, I find a reasonably clean sweatshirt. No time for a shower -- at least some sense of urgency, now. I wedge on a battered pair of Keds with no socks because I can't find any. I brush my teeth and spit out blood.

The walk across campus is a lonely one. Pendle College is at the far south end of campus, the infirmary at the far north, off the Spine. On weekends, Lancaster University is deserted. Most of the students go home. There are only a few people walking along the Spine, mostly around the library, and even fewer after I branch off north, heading to the outskirts of the campus. The wind has picked up again, blowing hard from the northwest. It tears across the top of the hill. It cuts through my thin denim jacket. Rain-soaked grass numbs my feet. I am cold and wet and more than a little frightened. I am not prepared.

The sign at the infirmary says that they are closed on Saturdays:

In case of emergency, ring the bell. There will be a sister on duty.

I hesitate for a moment, thinking that it can wait until Monday. The image of twice-bloody urine convinces me to stay. I ring the bell a few times before the door makes unlocking sounds. A short woman pulls it open. She smiles and invites me inside.

"What can I do for you?" she asks.

I'm thinking about how best to summarize the past couple of weeks, but I don't have a chance to say anything before she interrupts.

"One moment," she says, closing the door behind me, "let us talk in here."

She leads me through the dark and empty waiting room to an expansive, high-ceilinged examining room. There are charts on the walls. Two soft tables jut out into the center of the room, crisp paper stretched across the tops. Counters line the walls. At the far end of the room is a good-sized wooden desk. It is bathed in a mute light from the tall window behind it. Cotton swabs, Kleenex boxes, tongue depressors, and several loose manila folders decorate the desk. The sister sits down in an oversized leather chair behind the desk.

"Sit down," she says, rearranging some of the folders before looking up at me. "Please do continue."

I start to explain some of my general symptoms. Just a few things, off the top of my head: tired, feverish, sick and tired for days.

"More than anything else," I tell her, "it has been the intense fatigue. I just can't shake it. But there are other things. See these?" I say, lifting my upper lip. "A bunch of sores. I don't know why."

She removes a tongue depressor from a bluish jar.

"Hmm," she says.

"And I guess the really important one happened earlier this morning. My urine was all bloody."

"Bloody? Was it painful? Did it burn?"

"No. It wasn't -- it didn't. I thought it was kind of strange, so I thought I should get it checked out."

She nods her head. "Yes, yes. I'm glad you came in. Do you think I can get a urine sample?"

"I'm not sure. Maybe. I've already gone twice this morning."

She gives me a glass of water to drink, and a plastic cup to pee in.

"The bathroom is just over there," she says. "Take your time. Please try."


#

There isn't much to the sample, but what little I was able to force out is completely red. The sister rubs her right eyebrow with two fingers.

"Hmm," she says, almost to herself. "The fevers and such I can understand. There has been a bug going around, and I can understand that. I'd prescribe plenty of rest and Vitamin C (she pronounces it vit-uh-men, which is one thing I love about England). But those sores on your mouth. And the urine. I am afraid that I don't know what's going on, either. I am going to ring the doctor on call. He lives just a few minutes away. I hope I can reach him. He should have a much better idea of what is wrong."

What Do You Think It Is?

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She steps out of the examining room to make the phone call. I'm too tired to think. When she returns, she relaxes in the chair and asks me if I've been enjoying my stay in Lancaster? How long have I been here? Where are some of the places I've been able to visit? Where do I live in the States?

We talk for five or maybe ten minutes without saying a word about my health.

The doctor comes blustering in from the cold. His cheeks are red. He smiles and shakes my hand. His gloveless hand is cold against mine. The sister stands up and offers him her chair; he shakes his head no, then leans up against the edge of the desk close to me. He is fairly young, maybe forty-five, fifty, with a salt and pepper beard. His eyes are dark and questioning. More of the same questions as before, with more of the same answers. He uses a cotton swab to dab at the numerous sores inside my mouth. He shines a pocket light into my eyes, down my throat.

"Tell you what," he says after only a cursory examination. "I have a colleague at the Royal Lancaster Infirmary. It's the hospital in town. He's a specialist. I'd like for him to take a look at you."

"That's fine," I say, not thinking to ask what kind of specialist. "But I don't have a car or anything. I'm not sure how I'd get there."

He laughs.

"Definitely not a problem. The sister here will take you. He might want you to stay overnight -- my colleague, that is -- so you should probably pick up a few things from your room. Toothbrush and toothpaste. A change of clothes. You can stop by your room and pick up whatever you need."

"What do you think it is?" I ask.

"Impossible to say, really," the doctor says.

"Will I be at the hospital very long? I mean, should I tell somebody?"

The doctor shrugs. "Good luck to you," he says.

Things Move Quickly Now

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We make a brief stop back at Pendle, just long enough for me to duck in through my open window, stuffing a few odds and ends into my backpack: some homework from my Shakespeare and Victorian Lit classes, my Walkman, a few mix tapes, extra batteries, toothbrush and toothpaste, deodorant. I exit through my door, locking it behind me. I pass by David on my way back outside, giving him the condensed version of recent events - I'm going to the hospital, probably overnight, not sure why, will call with more info later - before I'm on the road again into Lancaster proper.

The sister leads me through the Royal Lancaster Infirmary. It is old and worn. We wind our way through narrow corridors. Paint flakes from the walls and ceiling. We stop outside a small room, where we are greeted by a young man in a white coat.

"You must be Robert," he says, shaking my hand briskly. He looks exactly like the first doctor, the one from the campus infirmary. Except he's older, and he doesn't have a beard, and his hands aren't cold. Plus he doesn't ask any questions. Maybe it's the eyes.

"This will be your room," he says.

He leads me into the room. It is just across the hall from what looks to be some kind of nurses' station. I mean "sisters." That's what they call nurses here, at least the ones I deal with. There are windows on two sides of the room. A smaller one looks into a narrow alley, the other, larger and wider, gives me a view into the interior of the hospital.

A simple bed rests in the middle of the room, white sheets and white blankets, enough space to walk on either side. It surprises me that I have my own room. There is a vast ward just outside the room, with beds no more than five feet away from each other, light curtains separating them. But here I have my own bed, and walls, windows, a door. Seems odd.

"This is mine?" I ask, a little uncertain about the arrangement. It can't be more than a few hours after I first walked up to the campus infirmary. My mind is slow to catch up. And with all this walking around and everything, meeting all these new people, only getting fourteen hours of sleep the night before, I'm beginning to feel pretty wiped. Before I settle down, I want to make sure.

"You might as well make yourself comfortable," the doctor says. He pats the bed.

"What's next?" I ask. "Do I have to do anything?" I'm thinking a nap would be nice. I'm hoping there's not much for me to do other than sleep, get some medicine, maybe catch up on some homework later. It occurs to me that I haven't had any lunch yet. Can I even eat? Will they bring me food? Hospitals do that sort of thing, don't they?

"We're going to want a sample of your blood, first. A good sample. One of the sisters will be here in half a moment to help out. She'll draw the blood.

"From there, depending on what the blood test tells us, we might want you to meet a specialist, here, a hematologist. He's fantastic. Dr. Gorst. Marvelous."

"A what?" I ask.

"He's a specialist," the doctor says again. He moves throughout the room, adjusting the blinds, checking the bed, lining up a row of empty plastic bottles on a small table underneath the interior window.

"We suspect something might have gone bad in your blood. This quick test, from the blood draw the sister will do, this will help us understand more about what's happening. Dr. Gorst, he'll have some additional tests he might want to run, when he arrives later."

The doctor stops short, as if remembering something.

"But I'm getting ahead of myself. What's next? Try to get some rest. We'll be just outside if you need anything."

"Thanks," I say.

The sister from the University, who has been standing in the hall, reaches through the door and hands me my backpack. She smiles tightly.

"Good luck to you," she says.

The results of the blood test are not good

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The results of the blood test are not good. They tell me that they need to do some additional testing. They tell me that they have called a specialist, an oncologist, who knows more about things in the blood.

"There's something in my blood?" I ask.

That's what we are not sure of, they say. That's what the oncologist will tell us, Dr. Gorst. Your blood is bad. It has gone bad but we don't now how. He will tell us if it is in your blood making your blood go bad, or if it is your bone marrow doing the same. We aren't sure just yet.

The aspirate is not fun

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The aspirate is not fun. The doctor is an old man with thin white hair. He walks carefully into the room, as if trying to avoid marbles that have been scattered on the floor. His arms are thin and bony, but his grip is strong. He reminds me of a Norman Rockwell painting.

A male nurse enters the room after Dr. Gorst. He pushes a metal cart. It jangles with equipment.

"Robert," Dr. Gorst says, flipping through a couple of pages on a clipboard. He says my name almost as if it is a question, as if he is making sure that he is in the right room. I nod, but he is still reading the charts and papers, so I don't know that he sees it. He finally sets the clipboard down. He lowers himself to the edge of my bed, hands on his thighs, a deep exhale as he sits down. He pats my legs. There is something about this man that I like. I imagine him in a battered cottage in the country, removing lollipops from a big glass jar, smiling at the children he helped deliver.

But then he asks if he can take a look at me, and I remember that he is an oncologist. A blood specialist.

He puts the back of his hand against my forehead. He asks to see the sores inside my mouth. "Have you been bruising at all," he asks.

"A little," I tell him. I am wearing shorts underneath the blankets. "There are a few on my feet. See?" I pull back the blankets.

"Yes. And these spots, too."

I tell him that I don't know what those are.

"Would you mind turning over for a bit, son?" he asks.

I roll onto my stomach. He touches a few spots on my legs. "You look like a punching bag back here," he says. I glance over my shoulder and see several purple and black on the backs of my thighs. "You can turn back over, now," he says.

"Well. There is no question that we want to do this aspirate. Do you know what an aspirate is, son?"

"No. No idea."

He clears his throat. He turns to the male nurse. "Can I see that one... no... over there... yes. That's the one." The nurse hands him a long needle.

"Are you afraid of needles, son?"

I tell him that I am not, even though the sight of that particular needle is more than a little spooky.

"Good, good. This needle here is hollow. There is a little hollow tip at the end. Can you see it? I will put this into your back, just above your tailbone, and pull out a sample of your bone marrow. That's what we are after, really, your marrow. Now it might hurt a bit. We are going to have some anesthesia back there, but I'll need to put a good deal of pressure on your back. It needs to go into your bone, understand, so it might take some work."

I nod again. Somehow I wish that his arms were larger.

"Good. Excellent. We can go ahead and start now, if you'd just lay on your side. That way. On your left side. Good."

I ask him if it would be easier if I removed my shirt. He tells me that would be fine, so I take it off. I lay on my side. There is the clatter of metal on metal behind me. Dr. Gorst clears his throat again. He whispers to the male nurse, and then I feel something cool and wet on my back. An alcohol swab, I guess.

"There will be a little sting here, Robert. This is the anesthesia. It will be like a bee sting, and then things will start getting numb."

"Okay."

And then the sting comes, exactly as he said it would. It is near my hip, on the right side of my back. The "up" side. My skin begins to feel tingly and numb. I can feel him working the needle around, spreading the anesthesia. He pushes against the skin. His thumb is there but I can't really tell. The male nurse hands him a different needle. He pushes in more anesthesia.

"You're doing fine, son. I'm going to put the other needle in, now, the hollow one. Here is where it might hurt. If it starts to hurt too much, let me know, and I'll give you more anesthesia. But you have to let me know."

I clench my teeth. I don't feel the needle enter my skin, but I do feel pressure against my tailbone. It is a steady pressure. Dr. Gorst grasps my hip with his hand. The pressure increases to the point of pain. Extreme pain. Anesthesia can do nothing for this type of pain, I know, so I say nothing. It hurts like hell, and I bite down, eyes closed, trying to think of other things.

It stops hurting. Dr. Gorst releases his grip. He takes a deep breath. "Those are some strong bones you've got there, son." He chuckles. "Let's try again."

The pain increases. I want to cry out. It feels as if he is trying to drive a spike through my back. But I tell myself that I can't scream. He is doing his job. He is doing what he has to to help me get better. It will be no easier for him if I complain about a little pain.

"There," he says, finally, taking the needle out of my back. "That should be plenty." The sound of paper tearing. A dry cloth wiping at my back and then some kind of adhesive. There is a thick bandage on the site. Dr. Gorst stands up to leave.

"We should have the results back for you in a few hours. At least the preliminary results. We'll want to run quite a few tests. But I'll be sure to let you know as soon as we find out anything."

I thank him for his efforts.

"No, son, thank you. That had to hurt, but you were very good about it."

I start to thank him again, but he cuts me off.

"I will be back with these results as soon as possible. Get some rest. Sleep. You'll feel much better for it."

Sunday is difficult

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Sunday is difficult. I am in the Royal Lancaster Infirmary. They have put me in my own room. I have a portable toilet in one corner because they do not want me to go outside. One of the sisters brings a television set, vcr, and several movies. She asks me what other movies I would like to see. I tell her that I should probably call my parents. Could I please use the phone?

"One moment and I will bring one to you," she says.

The phone is on a cart. A long cord dribbling out underneath my door, across the corridor to the office. I had planned on calling much later. Past eleven o'clock again, for the cheaper rates.

But I'm in the hospital. The doctors have already told me, after a bone marrow aspirate yesterday afternoon, that I have "a bone disease."

Several hours after the aspirate, two of the doctors, a man and a woman, stand just inside my room. They both hesitate when they speak, as if they are not certain who should break the news. I forget their names. The woman tells me that they have narrowed it down. The man tells me that it is in my bones. The woman says that they are running additional tests. The man says we will know more later.

This is all that I have with which to call home (I have to call home, you understand):

Extreme fatigue for almost a week. Legs and stomach and back that are covered with bruises . Red dots on my feet and shins, bleeding gums (still), sores all across the inside of my mouth. On my tongue, even. And, finally, "a bone disease."

(if i'd had any kind of sense, if i knew even the slightest thing about cancer, i would have known then that it was leukemia. i was textbook. go to the library. find one of those thick reference books that i was so afraid to find for myself. reading through a list of symptoms will show nearly all of what i had. and still i was clueless. i had no idea what was wrong.)

The phone rings. She picks it up at the second ring.

"Hey, mom," I say.

"Robert. I'm glad you called." Excited. That lift in her voice. "I was expecting your call. But I won't be here this afternoon. I would have missed it."

"Why? Where are you going?"

"To the theater," she says. She is happy, talking fast. It is morning at home. I imagine her pacing around the house, the phone cradled under her neck. She talks with her hands. "We are going to the Fifth Avenue. Donna, Janet, everybody. We're all meeting downtown for lunch, then maybe some shopping -- Nordie's is having a sale -- and then we're going to see... what was that... I have the tickets here. Oh, yes. The Autumn Cycle. It's supposed to be quite good."

"Sounds like fun," I say.

"It should be. You know I always enjoying going out with the girls."

Small talk. The knowledge, in the back of my mind, that have to come out and say it. I have to make the leap. My heart thumps. I do not know how to say this.
There is a momentary silence. I'm looking around the room, realizing that I'm in a f***ing hospital, and that my mother has to know. She starts to say something but I interrupt her.

"Mom, I have some bad news. Some pretty bad news, and there's no easy way to say this."

More silence. You know how sometimes it is possible to see the person on the other end of the phone? There is no logical way for you to see her, no video camera recording images, but you know her so well that sight is there anyway. The image is burned into your brain. You have seen silence time and again throughout your childhood, when you and your sister would fight and one or the other would get injured. Or when you would butt heads, you and your mother, testing the limits she'd imposed on your teen wings. You know what that silence looks like. It is visible in the hospital room. You can see it feel it taste it.

I see my mother's jaw tighten. Her body tenses. Shoulders, arms, everything. It is a clear difference; she becomes like a board. Her eyes stare at a point on the wall. They do not focus on anything in particular. Suddenly, the only thing that exists in her world is the tenuous phone line between us.

"What?" she asks.

"I'm in the hospital. In Lancaster. I've been pretty sick. I don't know if Laura told you or not. I've been feeling pretty run down the past couple of weeks."

"Yes?"

"Well, the doctors say that they aren't sure yet. They want to run some more tests. But they do know that I have a bone disease. Something in my bones is making my blood go bad."

(she knew then, my mother. she knew exactly what it was. you do not get to be a mother without knowing about leukemia.)

I try to describe my symptoms. She is crying and it is difficult to know if she hears me. I keep telling her that it will be all right that the doctors say I will be fine.

She wants facts. When did you do this? Where are you? What are the names of these doctors, where are you, what is happening?

And then she cannot speak. She sobs into the phone. I can't understand what she is saying.

Paul, my stepdad, comes on the line. We talk about the Sonics and the house and classes. He asks what mother is so upset about, did I flunk out or something (hah hah)? I tell him that I am in the hospital. Nothing serious, just the hospital, and she probably thinks it is worse than it is. You know how she gets (wink wink).

"Hold on, he says. "Your mother wants to talk to you again."

She starts talking immediately. Composed. She has a pad and pen with her. Not that I can see this, but I know; she needs to establish control. Give me the names of your doctors. What is the name of the hospital. How long have you been there. What exactly did they tell you. Are you on any medication. What is that time zone thing again.

There is no tone or pitch in her voice. She is struggling to hold back the flood waters. She asks me what they think it is and I start to answer something about uncertainty. And then she is wailing again. Hold on, she says (i think), I'm going to get your sister. She walks down the hall and pounds on Laura's door. The sounds are muffled, as if she is holding the phone at arm's length. I don't think she wants me to hear her crying.

There are a few more indistinct sounds and then Laura is on the line. Somehow I know what I am going to say to her; I have known for the better part of the day. I'd actually rehearsed it. It was earlier in the day, after the doctors had left, when I knew that I was going to have to call home. You have to understand that I dreaded making this call like no other phone call in my life. I'm in a small room in a small hospital in Northern England. The room looks out onto an alley. There is an I.V. running into my arm. Two bags, one yellow, one clear, slowly drip into the tube. I can't even leave the room to go to the bathroom. My urine, being collected in bottles, is still more blood than anything. I am having difficulty understanding the situation myself; how am I supposed to explain it to my family?

My sister and I are close. We are much closer now than we were in high school, but we would stick up for each other even then. Sometimes we would come home and fight. More than just verbal abuse. We would punch and scratch. There would be bruises. We even brought out steak knives from the kitchen, once or twice. I remember stabbing the floor next to her head, intentionally missing wide because I couldn't conceive of hurting her for real.

There was a kid named Jeff Woods who lived across the street from us. He was a year older than me, a year younger than Laura. Jeff and I built a tree house in the fifth or sixth grade. It was in the low maple next to his driveway. The tree house was only five or six feet above ground, nestled in thick, forking branches. We formed a secret club, away from mothers and sisters. I'm not even sure how it happened, but one day he threw me out of the club. Literally. The ground was wet and soft, covered with fallen leaves, and I landed on my back. He pounced on me, started tapping my chest with his fingers. He weighed more than me and I couldn't move. It was driving me crazy. He tapped and tapped and pretended that he was going to spit in my face.

And then Laura came out of nowhere, a flying tackle that sent Jeff Woods sprawling. She hit him. We'd had enough practice fighting with each other that she'd gotten pretty good at throwing punches. But she also knew that this wasn't her little brother that she was beating on; the rules were a little different. She tore at his hair. He screamed. He tried to get away but she had him pinned. Laura told him that if he ever tried to hurt me again then she would kill him.

She would look out for me. Bottom line. It was okay for her to beat up on me; I was off limits for anyone else. You fight and hate each other but, in the end, you take care of each other. That's what brothers and sisters do. If something threatened one, then it also threatened the other. We would present a united front and together we were stronger than the individual.

She is on the phone asking me what is happening. "What's wrong with mom?" she asks.

"Laura," I say. "I really f***ed up this time."

Please be on my side. Protect me. I am your baby brother and you have to take care of me.

A Better Use for Shakespeare

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My first aspirate was lying on my side.
The doctor anesthesized a spot on the
right side of the small of my back.
He pushed a needle into my bones
and I gritted my teeth against the pain.
Afterward, he put a pressure bandage
on the site of the wound,
telling me to lay flat on my back.

This was the thing about the early days:
my blood was not clotting.
Over and over again that was the most dangerous thing.
The bandage was soaked red in an hour.
A different doctor checked the bandage,
replaced it,
and suggested that I put my hand
underneath my back, lay on it,
to create more pressure.
I tried it, but my hand fell asleep,
and the bandage was red again, anyway,
several hours later.

And here is the funny part about all of this:
I had brought my books with me,
in case I felt like studying while I was in the hospital.
(i didn't know that i was going to be leaving lancaster,
that i had been to my last classes there)
After my bandage had been replaced
for the second time,
I took Henry IV from the desk near my bed,
a small soft book,
but suddenly hard underneath my back.
What I laughed about later,
with my English major stepmom,
was that this was probably
the best use I'd ever have for Shakespeare.

That for all his writing skill,
and for all his "tangled webs we weave,"
the thing that he did the best
was to keep my blood inside of me.

February Night, Late, Lancaster

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February Night, Late, Lancaster

I remember waking from a nightmare.
I lose track of the dream.
Something about a chase -- a shadow,
some dark form, blurred, chasing me.

Upon awakening:
lying on my side
in a shallow pool of blood,
formed where the weight of my body
had caused the bed to sag.

During the dream, the nightmare,
while fleeing from the shadow,
I had wrenched the I.V. from my arm.

(my blood was not clotting,
you see.
so when the tube was pulled
from my vein,
a dark line in my arm,
it was like a faucet.
my heart
pumping pumping pumping
blood pouring onto the sheets)


I woke
dizzy, tired, three in the morning.
I felt guilty.
I remember this.
Guilty because I had soiled the sheets,
because the night nurse would have to change them.
He jogged down naked corridors,
returning from the linen closet,
new sheets and pajamas
bundled in his arms.

I remember not being worried
or afraid
that I had lost so much blood.
It was embarrassment:
that I was a child,
a small boy who had wet his bed.

I slept so much

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I slept so much. My body was so desperate for sleep that I would nod off at every opportunity. During the winter in Lancaster, the days would often be covered with a thin veil of darkness. The morning would progress from black to a mute, overcast grey, then slowly back again to darkness. Within the confines of my hospital room, I lost my sense of day and night, lost it in all of those shades of grey. My first few days were a confusing mess of dreams and nightmares and waking memories.

That's the point, isn't it?

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I knew that morning had finally arrived when a young, clean-cut doctor appeared at my bedside. He introduced himself as Dr. White. He explained that he'd been reading my charts, and that he'd been informed about my accident from the night before, about the blood-stained sheets. He had a small metal tray in his hand. I couldn't tell what was on it. He asked if he could see my forearm.

Still a little groggy, I raised myself up on my elbows.

"Here," I said, extending my right arm.

"Sounds like quite the mess last night," he said. He held my wrist with one hand, and ran a finger up my forearm, almost as if he were tracing some veins just underneath my skin.

I apologized.

Dr. White twisted my arm slightly, and then ran his hand back down my arm. He tapped at my wrist a few times.

"No, no," he said. "No need to apologize. We just don't want you losing any more blood."

He wiped away some dried blood from the base of my wrist. He used a cool alcohol swab, then dried the skin with a gauze. Suddenly, there was a sharp pain where the gauze had been. I looked down. He'd inserted the small needle at the very base of my wrist, and re-attached my I.V. to the end of it.

"What?" I was still confused. Why did he put the needle there?

"Don't worry," he said.

He took some adhesive tape from the table behind him, and taped the needle and a small amount of the IV tubing to my wrist and forearm.

I tried moving my wrist. It was awkward and uncomfortable. If I bent my wrist even a little bit, I could actually feel the needle. The only way to avoid discomfort was if I held my wrist perfectly still, perfectly straight.

"Look," I said. "This is really uncomfortable. Can't you put it in my forearm or my elbow or someplace?"

He shook his head.

"That's the point, now, isn't it? To make sure that it doesn't come out again."

My journal is slim and black

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My journal is slim and black and has many blank white pages. I have used a black pen throughout. It starts on July 29th, 1989, with two entries describing my goals and plans for the following summer. It continues in fits and starts, trying on different voices, sometimes the ink scratching across an entire page, sometimes only one or two paragraphs of lower case print and crossed-out sentences.

One page, maybe a third of the way through, has nothing but the word "red" written over and over again, upside down, sideways, twelve times in all.

More starts and stops follow. More commentary to myself. There are several attempted love poems, the beginning of a fantastic love story, something about a dream-girl come to life, a half-remembered dream about the conflict between a lake that falls in love with a man and the woman who tries to break the spell with magic pennies.

I'm reading the pages closely, now, because I know that I'm reaching the end of this book. There is one complete short short story here, one entry prior to the last one. I don't know where it came from: the handwriting is mine, but much, much neater and more controlled than the other stories. I remember writing it, of course, but I have no idea where the idea came from. Perhaps I'd grown tired of the many failed love stories and poems.

Whatever the case, the tone of this story marks a drastic change in my journal. A week or so after writing this story, my journal ends abruptly with one last non-fiction entry, dated 19 Feb 1990. The story is very short. I've transcribed it, here, exactly as it was written:





You're sitting on a bus, right. It's hot in the summer -- night. White car lights stream past. You're clean. Real clean, okay. You've got your fresh pressed business suit on. It's probably a dark grey, maybe ultra thin pin stripes; so thin you can hardly tell that they're there, except that the salesman said they were. You've got your red silk power tie and your Italian leather shoes. There's a solid leather briefcase in your lap that your wife gave you two Christmases ago, wrapped in left-over funny papers. She did it so you wouldn't get too serious at work, just like the Flinstones lunch box from your last birthday. Oh, you're clean all right. From the gel-pressed hair, to the fresh clean shave (you shaved at work, too, to ensure the smooth chin) and the suit and tie and shoes. You smell of crisp aftershave, of summer afternoons spent in air-conditioning, not on the sweaty street.

You are riding the bus, Mr. Clean.

You do this because it saves both time and money. The family only really needs one car, and since a bus runs right past your office, and right down the street from your nice blue house, you decided to commute. Your wife takes the car to and from her job, down in the valley. You ride the bus. 6:37 AM it leaves the corner; 4:45 is usually when you take it back, from the Park and Ride just across the street from your high shiny metal glass office building.

Tonight you're late. Mr. Punctual, Mr. Clean, Mr. See-My-Nice-Clothes. A client called and asked for the files or the invoice or the whatever it was that you were supposed to have finished yesterday. Yesterday was your anniversary, how sweet, and took the day off you did, forgetting about the report, or the thesis, or whatever. So you worked late and the sun fell behind a row of glass buildings. You shut the blinds in your office so that you could see better. Bent over a long mahogany desk and finished your work with nothing more than a thin line of sweat forming on your forehead. Called the Missus earlier and said you'd miss dinner, so sorry.

And now, at this very moment, you're rocking slowly back and forth on a city bus, your eyes dripping down with fatigue.

The man who sits next to you, suddenly, is wild eyed and heavy. He has a loose white sweat tee-shirt hanging from his chest. His breathing is labored. You shift in your seat, uncomfortable, of course, moving closer to the window. The man wipes sweat from his hair forearms. His jeans are tattered and dirty. He sits next to you, staring straight ahead, chewing on a piece of gum between heavy breaths. His hands are folded neatly in his lap.

Do you believe in God, he asks.

Pardon, you say, turning to look at him. His chin is covered with fine black stubble; his adam's apple bobbing bobs up and down with each chew. His face still points to the front of the bus. He makes no movement, makes no response, and for a minute you think you mistook him. You look around the bus, putting one elbow on the seat behind you to see the back of the bus. There are two hispanic kids on one of the side seats, an elderly woman folding her newspaper, and four girls taking up the entire back seat.

The bus is empty.

The man next to you is now breathing softly. He runs a pudgy left hand through his hair, straightening it a bit.

You believe in God? he says again, quickly. This time he turns to face you. His jaw is solid and tight. Green eyes reckless in the night. You open your mouth to speak.

Neither do I, he says, sliding the long knife between your ribs. You clutch your shirt, hands like sieves, feeling the blood pour through. The metal of the knife touches your fingers. Wild eyed green eyed licks his sweaty lips, turns the blade so that you feel it scrape your ribs.

Ah, you say. Ah, shoot...

The man puts a roll in your mouth and pushes the knife deeper into your stomach. The blade cuts the insides of your fingers as you struggle to hold your insides inside. The man smiles. You begin to gag and your suitcase falls to the ground, popping open with the force.

As your eyes begin to close, and tiny, star-like things cloud your vision, you notice a thermos rolling down the floor. It has a picture of Fred Flintstone hitting chasing Barney Rubble. Fred carries a large club. Dino chases behind both of them, a caption saying "Yip yip." For some reason, you laugh, spitting up a thick red lump. The thermos rolls under your seat, and the darkness is complete summer night comes down around your ears.

Consider a beetle

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A number of friends have asked me how I reacted when I found out that I had leukemia. I'm not talking about the moments when I thought I had something or other, or when the doctors told me that it was "something in my bones," before I called home. They wanted to know what I did after Dr. Gorst sat on the edge of my hospital bed in Lancaster and told me, explicitly, that I had a "rare, acute leukemia." When he used the words for the first time I didn't even know how to spell them. Acute myelogenous leukemia. I mangled the words then; now I can spell them in my sleep.

One of my mother's friends approached me at a party, maybe a year after I left the hospital for good. It was a big family barbecue. There were hamburgers and hotdogs and beer and chips and little carrot slices on white platters. We filled ourselves on appetizers and weren't hungry for the main course. Most people were milling about the back yard, grabbing beers from the cooler, threatening to spray our cat with the hose. I went inside to change the CD when this friend of my mother's stopped me. She had been drinking all afternoon. It was hot outside and my head throbbed.

She asked me if I ever thought that I was going to die. Out of the blue, no preface to the question. It surprised me. I told her no, I never thought that. It never crossed my mind. Death was not an option.

She told me that I must have. How could I not? Things were so bad. I was hanging by a thread for so long. How could I not have thought I might die?

And maybe it's because she has never had leukemia that she can't understand. Maybe it was because I'm more optimistic than she is. I don't know. It angered me that she would try to tell me what I was or was not thinking. My mother did it to me once, also during that summer, when she tried to tell me how I should react to leukemia. She said the same to my sister, two some years ago, and we both agreed that it was none of her business how we dealt with leukemia. I told my mother's friend, again, that dying never occurred to me. Twenty years old is not the time to die. Period. End of discussion.

She continued to disagree with me; at one point, she actually told me that I must have, at some time or another, entertained the notion. Didn't I ever think it might happen? What about when I first found out? What about then?

It got to be so frustrating that I had to laugh. Sometimes people saw the word "cancer" like it was a death sentence. They assumed that I would see it the same way. They saw the hair loss and the vomiting. This friend of my mother's saw me when I was on antibiotics, after the brain surgery, listless and pale on the living room couch. They would dwell on the negatives too much. It got so they couldn't see anything but the negative aspects of leukemia.

After Dr. Gorst gently closed the door, leaving me alone with my cancer, I reached into my backpack for a pen and something to write on. I'd left my journal back on my desk, so I settled for a piece of notebook paper. This is what I wrote:

28 Feb 1990

Some thoughts: people have been asking me one question over and over: how do you feel? They want to know how I'm dealing with the knowledge that I've got a malignant disease -- a cancer -- and that I very well could DIE from it, if not treated carefully. I don't know. I'm still shaping my opinions, but they basically boil down to one analogy.

It's as if a small boy squats down, in the summer, to look at a beetle walking by. With one casual tip of his forefinger, the boy flips the beetle onto it's back. He walks away, laughing. Perhap's he's going to get a magnifying glass. I don't know. The point is, what does the beetle do? Does he lay on his back, slowly blistering in the sun, thinking "Gee, that's not really fair," or "Damn it, why me, why not the next beetle? Why me?" or even "No. This isn't happening. This can't be happening."

You can be damn sure none of those thoughts enter his meager little brain. What he does is start kicking and rocking and flailing, doing everything in his power just to survive. To me, that's all that matters: getting well. I've got leukaemia (sic), and I'm certainly not happy about it, but I've got a future to think of.

There will be no crying over spilled milk, only a voice in the kitchen saying "could you toss me a rag, please? I've got a real mess to clean up."

A Logistical Nightmare

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Getting from Lancaster to Seattle was a logistical nightmare. I spent the vast majority of my time in the hospital laying in bed. I slept and I tried to eat and sometimes I'd watch television and then sleep again. I knew that I would need to leave the hospital, but I did not spend a single moment thinking about how it would actually take place.

And yet there was an enormous sense of urgency that surrounded me. I could sense it at the edges. A small thing, like the chart affixed to the end of my bed. Even in Lancaster, there was information on that clipboard that I knew nothing about. The sisters would come into my room throughout the day, taking my temperature, my blood pressure, asking how I felt. Every once in awhile they might withdraw more blood. Numbers and letters filled the charts. Doctors reviewed the numbers and letters. They conferred with one another. They called my parents and shared information and discussed options and gave direction to the sisters who would come into my room again, rousing me from my slumber, asking me to swallow this small plastic cup of thick medicine that tasted like bananas.

So much activity, so much concern, so many plans being made all around me.

It is difficult to trace back to the beginning of the logistics required to transport me from Lancaster to Seattle. At first, I thought, it was the insurance company. They play a large part in determining my final destination: if they are going to pay for all of my travel expenses (which they will), they are not about to just fly my anywhere in the country. There are procedures. There are protocols. For the kind of expense necessary, they will only cover a few possible destinations.

To get a sense for the kind of expense required, it is necessary to understand a few things.

  1. I waited perhaps a bit too long before mustering the courage to visit the Health Centre. Because of that, I have become a considerable travel risk. As evidenced by the rapid departure of blood from my body when my thrashing sleep had pulled an I.V. needle from my arm, there is a great deal of risk to assume when putting me in an ambulance, or on an airplane.
  2. Because of that risk, it has been mandated (whether by the Royal Lancaster Infirmary or the insurance company, I do not know) that I be joined in my travels by both a doctor and a nurse. They will come from the Royal Airforce, or some such, and their travel costs will also need to be covered.
  3. This will be a non-stop flight. Period. We will fly directly from London to wherever the final destination may be to minimize any possible risk associated with moving me from one craft to another.
  4. Still related to transportation risks, I will need six seats for myself. I think they will actually remove six seats -- two rows of three -- from the left-hand side of the airplane, to be replaced by a stretcher of sorts. There will be a curtain for privacy, and hooks for antibiotics or blood that might need to slowly drip drip drip.

Not including the ambulance ride from Lancaster to London, then (which was probably covered by socialized medicine in England anyway) we will need nine airline tickets -- one way -- to be purchased within a few days of my departure. A quick price check shows that a one way ticket, non-stop, from Heathrow to SeaTac is roughly $1,000. I'm not exactly sure what the overall price tag was in 1990, but $10,000 would turn out to be a drop in the bucket by the end of the summer.

Give Me These Moments Back

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I was introduced to Kate Bush while spending countless hours in the Pendle College JCR. During winter break, while traveling solo from Lancaster to Mycenae and back again, she kept me company. It's hard to describe what her music meant to me, 20 years old, winding my way south through Europe, more truly alone than I'd ever been in my life.

Although the true meaning behind the song applies to something completely different, when I was first diagnosed with leukemia, knowing, even then, that I'd write about it someday, I carefully transcribed the lyrics to This Woman's Work inside my journal.

I know you have a little life in you yet.
I know you have a lot of strength left.
I know you have a little life in you yet.
I know you have a lot of strength left.

I should be crying, but I just can't let it show.
I should be hoping, but I can't stop thinking

Of all the things I should've said,
That I never said.
All the things we should've done,
That we never did.
All the things I should've given,
But I didn't.

Oh, darling, make it go,
Make it go away.

Give me these moments back.
Give them back to me.
Give me that little kiss.
Give me your hand.

In a different context, in a different kind of hospital room, I would sit on the edge of my bed, holding my Walkman loosely between my legs, hitting stop, rewind, play, stop, rewind, play. Over and over. Thinking that I should be crying, but I just can't let it show.

My First Will

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That night, that first night, music wrapped around my ears and a needle in my wrist and water at the edges of my eyes, I let my imagination carry me back home. I wore pajamas provided by the hospital. I had to lay flat on my back, resting on a book in the small of my back to keep pressure on the site of the bone marrow aspirate. One of the sisters would come in periodically and replace the bloody bandage, check my temperature, ask if I needed anything.

"No, no," I would shake my head. "No, thank you."

Fingers pressed against closed eyes -- thumb to the right, forefinger to the left. Push out, then back in, pinching the bridge of my nose. Slide down. Wipe the moisture on the bed sheets. Lower the volume on my Walkman.

What did I have?

It was a simple matter. It was practical. I didn't know what I didn't know -- hell, my first comic-book inspired vision of what a bone marrow transplant might look like involved a full skeletal replacement, and I was halfway hoping they had some adamantium lying around.

So when the doctors and the sisters and the visitors had left and it was just me and my blood and a handful of tapes I'd been listening to for six months, I got to thinking about what I had. My mix tapes -- with sides titled f***in' A! and Bee-Yootiful! -- songs that had been mapped out for consistency and style and transitions between artists, tempo, variety, well, I wouldn't want them to just get tossed in the trash after I died.

Would my sister appreciate them most? Or Aaron? Brady? It would probably be best if I decided on a fair balance, some tapes for each.

But then what about my books? Nintendo? My leather jacket? My Lynda Barry jacket, autographed at a writer's conference from my senior year in high school, tattered and faded but still important?

Or is it best, when making out a will in your head, to first identify the people you want to give things to, and then the stuff? I'd never done this before. I didn't want to figure out what to do what little shoot I'd managed to accumulate over twenty years, but I couldn't stop. Sometimes I would try to stop, covering my face with both hands.

But then thinking of somebody else's face brought more memories, and every piece of crap I imagined in my bedroom back in Renton, or my dorm room up the hill did the same.

I don't know when I finally fell asleep that night, but the will never left my head. It never became permanent. I never wrote it down, black ink, white paper. By the time morning rolled around -- Mom arriving sometime later in the afternoon after an unbelievably hurried flight across the ocean -- it didn't seem like something I needed to worry about anymore. I didn't know what was going to happen, didn't know what to expect. Without giving it another thought, I think I knew that a will was looking backwards (an attempt to itemize my past) when what I needed more than anything was to focus on the future.

The Arrival of Mom

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My mom has always been afraid to fly. Some combination of claustrophobia and being out of control kept her out of airplanes and elevators. There were almost always staircases, and in the rare cases that there weren't, the tense, nerve-wracking ride was at least mercifully short.

But there were places she wanted to get to that couldn't be reached by road. After years of avoiding the issue, 1984 or 1985, she took a series of classes to help with her fear of flying. Graduation was a short trip: Seattle to Portland and back. Even though she'd learned the principles behind lift -- how something much heavier than air could remain suspended thousands of feet above ground -- and she knew the different sounds one could expect during a flight, she still drove to SeaTac with a pale, sunken face. Her entire body so tense, my sister and sat quietly in the backseat, thinking that maybe even one word -- one breath -- and she'd immediately turn the car around and drive back home.

A few of her friends met us at the terminal. They were able to joke with her, offer words of encouragement. When it came time to board, she looked back at us, her face so hollow. One of the few times that I'd ever seen my mom truly, visibly afraid. When she came back the next day, she was still visibly stressed, but also clearly relieved. We still didn't take too many family vacations that required air travel, but at least she'd managed to conquer her fears.

And now: in a matter of days, she's learned that her only son has leukemia; has managed to get a new passport, somehow, in less than 24 hours; will be flying to England for the first time in her life; will take a several hour train trip from London to Lancaster; later that same night, she'll accompany her son in an ambulance back to London, where she will likely spend a couple of hours sorting out travel arrangements, again, for the return flight to Seattle.

It's safe to say that I'm expecting she'll be a complete wreck when she arrives.

Like I'm one to talk.

Anthony

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Unrelated, but this is what happens.

I met Anthony David Moore in September of 1992. We spent ten weeks together on Orcas Island -- two of the four male counselors -- teaching outdoor environmental education to fifth and sixth grade students. Experiential education. Learn about the dynamics of the forest by walking between old growth and new, high forest canopies giving way to a new stand of birch trees where fire had gutted part of the woods decades earlier. Learn about marine life by spending time along the beach. Up at the farm, seriously, illustrate that supermarket food comes from these animals, here, and that fruits and vegetables can grow in gardens like these. The ropes course, mostly just for fun, but also an amazing opportunity for kids to challenge themselves.

You spend a lot of time with your co-workers in that kind of environment. You live in the same house, eating meals together, working different elements on the ropes course, walking into Eastsound for some free time at either of the two bars in town (The Upper, on the hill overlooking the water, or The Lower, well, down the hill).

Some people you gravitate to more than others. With some people -- Anthony was one of them -- I found myself sharing more of my story, and the impact that I'd thought it had had on my life, barely two years removed from my last hospital stay.

We talked about where we were going in our lives, what we wanted to do. Big picture. As much as I loved the San Juans, working on Orcas was an escape from hellish summer temp jobs after graduation, an attempt to get my bearings before moving on. For Anthony, it was a natural step in the right direction. It was exactly where he wanted to be.

Anthony died in 1994.

He died in a plane crash. A small, commuter plane. There was ice, wings, a loss of control. Everything ended up in pieces, scattered across a soybean field in Indiana. No survivors.

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Nancy called me that night, I think, or early the next morning. I remember watching the news, thinking that she must have made a mistake because Anthony and I had played pool together in downtown Kirkland just a week or two prior, laughing, drinking beer, Jimi Hendrix in the jukebox. And besides that, there wasn't anything on any news channels about a crash. Not a word.

The words would come later. His face was on page 3 of the Seattle P-I. The front page of the Bellevue paper, The Journal American.

Anthony Moore, his co-workers said, seemed made for the work he was doing, reaching out to teenagers, involving them at the Eastside YMCA, trying to teach them values that would serve them as they struggled toward adulthood.

At 26, he was just getting started.

Moore was among 68 passengers killed Monday in the crash of a commuter flight from Indiana to Chicago.

I've been fortunate to have lost less than a handful of friends and acquaintances over the years. Unfortunately, they have all been to some sudden, instant, tragic accident. In the years immediately following my experience, two of these deaths -- Anthony, and Laurena Choo, waterskiiing in Thailand, spring term, 1991 -- hit me pretty hard.

I haven't thought about this in years.

f***.

Part of the mourning process, then, was to compare and contrast. I didn't understand it, how their candles were extinguished while mine, somehow, managed to continue. It wasn't survivor's guilt; I didn't think that it should have been me instead. It was more like I couldn't understand how I could have been so consistently, repeatedly lucky -- finding a way through one close call after another, more complications, especially into August, than I could have ever imagined possible -- while Anthony and Laurena, for everything else that was good and wonderful in their lives, were singularly unlucky, and that's all it took.

Not that it should have been me, but that it could have been me. Easily. I had so many more opportunities to die than they did. If it had happened, anytime during the summer, it would not have been unexpected. Not at all.

Visitors

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My hospital room was a smallish rectangle. My bed rested pretty much in the middle of the room, lengthwise. A window stretched out across most of the wall to my right. It looked into the hospital wing, the more crowded beds slightly down the hall. The door was just past the window, so when the visitors started to trickle in, they tended to congregate at the foot of my bed.

I figure I must have called David, or Simon, or somebody. I know that I didn't grab enough stuff from my room -- before I knew that I'd be leaving Lancaster, I was still determined to finish some of my homework. It's not like I ever locked my door, so I probably called one of the boys late that first night, when it became clear that I'd be spending at least a couple of days in the hospital. No big deal, I must have said. I just figure it might get a bit boring laying around in bed all day, so if you wouldn't mind grabbing some books from the corner of my desk, maybe some more tapes, whatever.

There would have been laughter. They would have given me endless amounts of shoot for being a stupid git, missing the chance to play pool that night, no chance to try besting my high score on the motorbike game. Of course, we'd dance quietly around the fact that they all had to wear surgical masks before they could enter my room, and there would be sideways glances towards the IV running into my arm, but these things are to be expected.

I'm sure that I called them after the test results came in. There was still some hesitation about whether or not my treatment would be in London, or, more likely, Seattle. Not a problem, I'm certain I told Wayne, or maybe Chris. Jim? The doctors had told me, I'd told them, that survival rates are exceptional. Nothing to worry about. It's just that well, bollocks and all, I'd definitely be leaving the campus. Quickly. At most, a matter of days.

And when my friends visited again, later, a gentle, steady, ever-expanding wave of smiling, worried faces from the University, we were still able to laugh together. They brought gifts and get-well cards. I was tired, and nervous, and at the same time that I wanted to rest for the eventual trip back to Seattle, I didn't want to say goodbye. It felt strange -- as the details of my departure were arranged behind the scenes, conversations I was not privy to -- as the waves subsided. I felt stationary, like I wasn't going anywhere. I think maybe I got out of bed, but maybe I didn't. Everything moved around me. Everybody said goodbye to me, then walked away, smiles and waves trailing along the window and past my field of vision.

It felt like I wasn't the one leaving Lancaster, but that my friends were leaving me.

Midnight Run

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The ambulance was to arrive around midnight to take the four of us -- Mom, myself, and both the nurse and the doctor from the Royal Air Force Medical Corps (my escorts for the commercial flight to Seattle) -- to Heathrow. Although it wouldn't take us nearly that long to get to London in the middle of the night, it would allow us to miss rush hour traffic completely, arriving hours before our flight.

Along the way, I would finally be receiving a blood transfusion. I'd lost so much blood over the course of a few days -- either through my urine, my gums, or stupid, senseless thrashing around in my sleep -- that a few pints of liquid refreshment. A new, steady drip to be enjoyed while I slept on the ride down, replaced with fresh blood, periodically, by one of my travel companions.

Delayed

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We left the hospital pretty much on time. Brief introductions, all around, between the ambulance drivers, the doctor and the nurse traveling with us, Mom, myself. The four of us piled into the back. I was groggy. Mom had pushed me through the hallways in a wheelchair, taking extra care with me, and there was a kind of a cot inside the back of the ambulance for me to lay down on.

Along with the much-needed blood dripping into my body was a steady diet of antibiotics. I rubbed my eyes with my knuckles. Gave up trying to find a way to make the cot as comfortable as the bed I'd just left. It was strange at first, laying flat on my back in a moving vehicle. No sense of direction, no idea where we were going except for what I could see of the night sky outside the narrow windows, turns and bumps that seemed all backwards and spun around.

Streetlights passed by slowly, steadily picking up speed, spapping past until my eyes stopped trying to chase them. Deep, shallow breaths. A light, tentative sleep.

I'm sure it was the absence of movement, the absence of noise, that woke me less than an hour later. The bright wash of lights, as if we were in a covered parking lot. A sleepy, fuzzy brain, trying to make sense of the situation. It didn't seem like we'd been on the road long enough to be in London already.

"Whuzziza?" I asked nobody in particular.

"Hush," Mom said. "Go back to sleep."

Propped up on elbows, now, blinking through the harsh lights. "Hurr," I said, more exhale than an "Hurrwethur?"

"No," she said. "We've stopped. There was a problem. Something with the transmission, I think. Whatever: we've stopped. They've called it in, and we're waiting for another ambulance to take us the rest of the way. Shouldn't be much more than another hour."

"Timeizzit" I asked. Head back down. Eyes closed. Deep, shallow breaths.

"Late," Mom said. "Very late."

Rush Hour

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I can't say for certain exactly when we got started again. A sleepy foot-dragging transfer between vehicles, two new drivers. As far as I'm aware, I'm the only one who'd been getting any sleep. Mom hates being late. She hates flying and she hates to be late, and we'd lost our comfortable cushion for getting into London. I'd still need to be examined by airline physicians; she'd need to get everything checked in, Customs, passports, and because of the way we would be flying back (six seats just for me), I'd also need to be on the plane before any of the other passengers.

My vitals needed to monitored every hour or so. There needed to be plenty of information about my condition to provide to the airline. An empty bag hanging above me would need to be replaced with a new bag, cold and dark, retrieved from a small blue cooler on the floor.

So many details to keep track of.

And another: instead of avoiding London rush hour entirely, we ran straight into it. We did not have time for this. I was starting to get a little nervous, although I figured that they couldn't just take off without us. I'd already waited long enough before going to the hospital in the first place. My limited understanding of the situation was that time, truly, was a precious commodity. We couldn't afford to wait however many days between this flight and the next non-stop flight to Seattle (assuming it had enough seats, was prepared to assume the risk of having me on board, etc.).

I don't remember if one of us mentioned something to the drivers, or if the growing sense of unease from the back was enough, but they turned on the lights, and the siren, and they drove.

"Hold on," they said.

It was remarkable.The kind of thing that -- if you're a twenty-year old guy, regardless of your condition -- you find yourself enjoying more than you probably should. The guy who'd been riding shotgun spent most of the next hour with at least half his body outside the ambulance, either yelling at people to get the hell out of the way or identifying gaps in the crowded lanes ahead.

Our driver made lanes. He used the shoulder when necessary. He sliced his way through what seemed, looking backward through the windows, to be nothing more than a four-lane parking lot. Laying on the horn, squeezing past confused morning drivers, threading the needle all the way to Heathrow.

We didn't get there with anything approaching the buffer we'd been expecting when we left Lancaster, but at least we didn't show up after our plane had already departed. Time enough for one last switch of an empty bag of blood for a full one, followed by hugs and kisses for Mom as she dashed into the airport alone, a promise to meet us onboard in half an hour or so.

Reacting To Blood

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It was early yet.
We hadn't even made it out of England.
Mother was running through Heathrow,
passports in hand,
exhausted, I'm sure, from the late
and sleepless nights.
I was in the United Airlines infirmary.
An airline doctor, apparently,
was to arrive shortly, to verify
that I was "fit to fly."

The rash was barely noticeable at first.
It started on the back of my hand.
It rushed up my arm,
wrapped around my neck,
crawled down my back.
My face flushed, my breathing labored.
What's happening? What...
My doctor said a reaction, quickly plunging a drug
into my veins. There, he said, there.
I had been receiving blood all night.
(replenishing lost fluids, i had joked with mother)
There, he said. It was just a reaction to the blood.

And then my stomach cramped.
Knives in my abdomen.
They helped me to a bed,
drew thin white curtains around me.
The doctor was there,
holding my hand,
saying there, there.
And I was trying to breathe,
and the rash was burning my skin,
and I thought
oh god oh god
this hurts this hurts
please don't let it hurt like this.

Our plane was leaving in two hours.
My doctor called an ambulance.
We've got to get you to a hospital, he said.
You can't fly now. We can't fly you out now.
They lowered me onto a stretcher.
The nurse wiped my forehead,
whispered hush.
And a brief thought,
between the stabbing pain:
now i've done it.
now i've gone and done it again.

A Change of Plans

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It's cold. Still pretty early in the morning, either the final dwindling days of February or very early March. I've kind of lost track. I'm not dressed for it either way. My shirt's off so the doctors can run lines, take temperatures, do whatever it is that doctors do for patients in the back of ambulances tearing through London. There's no heat. Not that it matters. My knees are huddled up to my chest.

I don't know anything about anything. There hasn't been time to research leukemia. Well, I guess there really was plenty of time, but I didn't know what was going on inside my body then. Didn't want to know. So it's mostly the not knowing that's the scariest part of the whole deal. Not knowing if this is what it's going to be like every day, or if it's just a one time thing. We haven't even started treatment yet. So if not treatment feels this absolutely unbelievably shootty, what happens when he really get started?

I'm all turned around. The plan was Lancaster to Heathrow to Seattle. University Hospital to Airport to Airport to University Hospital. Very simple. But now we're somewhere in London, driving someplace that wasn't part of the plan, missing an airplane that was. I can't figure out where we're going. This is troubling. Uncomfortable.

Shit.

Who's going to tell Mom that I'm not on the plane? How will she find me?

When in the hell are we getting to this hospital?

Waiting

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They've given me a thin white blanket, at least, standard hospital issue, after they've wheeled me into the busy emergency room. Brick walls, linoleum floors. Activity all around. Surprisingly (thankfully) the stabbing pain in my stomach has already started to subside. It's manageable. Most of the discomfort, now, comes from the fact that I haven't moved too far from the doors, and cold air continues to blast into the room.

Correction: I'm not exactly in the emergency room. See, there's all sorts of sick people in emergency rooms. Coughing, sneezing, wiping their hands on door handles or couch cushions or whatever. When your immune system isn't doing much of anything in the way of fighting infections on it's own, it is not a good idea to place yourself into the middle of that environment.

In many ways, we would learn later, a hospital is the absolute worst place to be when you've got leukemia, thanks to all the other patients sharing their infections with you. But a hospital is also the absolute best place to be. Leukemia is pretty f***ed up that way.

So we're up against a far wall in this kind of a wide passageway, probably closer to the curb outside than the front desk inside, with thick brick walls and sliding glass doors on either side of my gurney.

The RAF nurse remains nearby (I'll need to remember her name, later, because she was so helpful early on. She sent me a card a month or so into my treatments that I've saved with many others in two thick manila envelopes upstairs. For now, she'll need to be, simply, the RAF nurse. But before this is done, I at least owe it to her to remember her name, if for no other reason than the comfort she gave in that frozen f***ing London hospital).

Somebody had had my mother paged at the airport as soon as we'd arrived at the hospital. The nurse sat in a chair next to me. She told me that mom would be coming soon. Not to worry.

"They can't move you yet," she explained, "because we've already told them that you've got to have an isolated room."

"Don't they have any temporary rooms? Someplace warmer, maybe?"

"Do you want me to see if I can get another blanket for you? Are you cold?"

"No," I told her. "I mean, yes. If they have one. Can you ask them how much longer it will be?"

She got up to find somebody. "You're not exactly a run-of-the-mill patient, now are you? We've got to make sure they can set aside a room for you, a clean one, disinfected. But I'll ask. I'll be right back with the blanket."

And so we waited. The extra blanket, when she returned, helped, but not much. I was getting sleepy. I rolled onto my side, curled up again. Knees. Chest. Whenever the door behind me would swoosh open, I braced myself for the fresh blast of cold air. I would lift my head to see if Mom was coming through them.

We waited and waited and waited until I eventually woke up in a new bed in a narrow room, Mom sitting next to me, edged forward on a folding chair. My right hand dangled off the edge of the bed, wrapped up within both of hers.

I've Bled All I Can I Won't Bleed No More

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My hospital stay in London is as good a place as any for a rapidly-edited montage. No words necessary (saving the cost of paying actors and actresses for speaking lines in what, ultimately, will be a cameo appearance). The previous scene focuses on the hands. Maybe the camera blurs, or maybe it's a slow fade to black. We could probably kick the soundtrack in again at this point, another song inexorably linked to my months in Lancaster, This Corrosion by The Sisters of Mercy.

We may have to work on a special, shortened re-mix, because the whole point of the montage in the first place is that while there is activity in that London hospital -- doctors doctoring, nurses nursing, mothers mothering -- it is neither a beginning nor an end, a simple two day transition between where I was and where I needed to be. We've stopped moving. For the first time in about a week, there is nothing to do except wait until Saturday, when the next flight -- Pan Am this time -- will send us across the Atlantic.

Stop-motion photography, almost, meant to compare and contrast the sudden lack of inertia with the ongoing hustle and bustle both inside and outside my body. There is a camera on a boom where the ceiling would be in this tiny room. I will be motionless, for the most part, tossing and turning occassionally in the bed. Time passes. People enter and exit. Strips of sunlight crawl up the far wall, then disappear, overpowered by flourescents. Food is brought to me, consumed, discarded. You can catch the backbeat, the steady bass, and it almost feels like a dance. The camera has been moving steadily closer to my chest. The lighting appears to change again, daylight, maybe, grey and muted. The camera is close enough, now, that everything happening around me is nameless, faceless, a blur of hands with thermometers and blood pressure cuffs and tiny paper cups filled with medicine, needles and vials, blankets and pillows. The slowy, steady drip of clear liquid from a bag above my head, down a plastic tube, winding into my arm. The camera follows the tube, loses focus, then shoots into my body.

Here we take a cinematic tour of my bloodstream. I don't know that we need to show good blood versus bad blood, or what that would even look like. What the budget would look like for the necessary special effects. But we've got music, and a steady beat, and we already know that we've lost enough time to unexpected delays. We can let the camera linger somewhat. It is quiet here. Blood is pumping. Things are working, even if they're not.

The chorus repeats itself in the background: hey, now, hey now now, sing this corrosion to me. Over and over, like a hymn.

And once, maybe twice, as both music and images fade, four words that resonate above the others, a reflection of the optimism that still managed to prevail as we prepared ourselves to fly west over the Atlantic, the beginning of our journey, really, although in many ways it would feel like the end:

Like a healing hand.

In Other Words

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One of my mother's oldest and dearest friends happened to be visiting her daughter in London at the same time I was getting poked and prodded and diagnosed in Lancaster. She shared two days from her journal (only two days!) with Mom. Recently, the photocopied, handwritten pages arrived at my house along with many other documents. It's good to see things from a different perspective. Outside looking in, instead of the other way around. Here's what Gail wrote:

2/27/90 - London

Jerri called and sobbed. The doctor says Robert probably has leukemia. What do you want me to do? Please go and hold him for me. So I called Dr. Lorigan at the Royal Lancaster Infirmary. He was very available once he ascertained that Jerri had already told me how ill Robert was. He said well, it's not certain, but if it's not leukemia then it's something just as bad.

I asked him how Robert was doing, and he said he's very stoic and also denying, but I don't know what's in the back of his head. So then I talked to Robert and he said I don't know how I managed to catch this blood disease, but it's left me wide open to catch anything that was going around the school, so I've got this bad cough.

I asked him if the antibiotics made him naseous and he said no, they're putting it through my veins very slowly so it doesn't tear them up.

So, I said, I'll probably be up tomorrow and he said you can stay in my school room. I'll tell you where I hide the key. Then we talked about his Christmas trip...

I thought a lot about it the next day -- sad and angry and disbelieving. The following morning I called Dr. Lorigan again and told hiim I had decided to wait a few hours to see if Jerri was coming to England or not because I thought she would probably need me at the airport, and the train to Lancaster, and would he please inform Robert I was still deciding. He said call back at half-one and our diagnosis will be certain.

It was leukemia for sure. I called Jerri -- she was leaving on the 708 TWA. Dr. Gorst the hematologist had arranged for someone to meet her at Heathrow but I asked her if I could meet [Jerri] there instead and go up with her. She said to just let Dr. Gorst know. So I will see [Jerri] in the morning. I feel very sad.

In Other Words, Part II

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Wherein my mother arrives in England; she and Gail travel to Lancaster; I try to lighten up the mood; memories overlap; they visit my room and meet some of my friends; are cared for by Colin's wife, Rosemary. Departure.

2/28/90
I got up at 4:30 to catch the 6:00 Speedlink from Gatwick to Heathrow. The driver got me to Heathrow ten minutes late and I worried that Jerri had already come through. Her plane -- the same that Steve and I had taken 6 days before -- had come in early. But she was walking through the crowd -- thin and exhausted -- wearing her black and white tweed coat, a pink turtleneck under a long thick sweater, jeans, leather tennis shoes, carrying a smallish leather bag. We hugged and immediately left the airport for the Picadilly Line.

She was all there, helping figure out which way to go and how to buy the Tube tickets at the automatic machine. The train was clean. I can't remember the other people -- I just listened to Jerri.

At Euston we got off and went to the rail office and each bought a ticket to Lancaster. Then we sat down and had sandwich en baguette with Coke and coffee. Weather snowed and rained, so the passing countryside didn't show up very well. We sat opposite the train table. I read her leukemia pamphlets and she talked and I talked and she cried and people looked at us.

No one was at the station as we got off. But in the upper lobby was the most curious welcome: a thin, little straight-haired woman in a neon green rain jacket asking if either of us was Mrs. Brown, hovering and apologizing that her husband had been delayed in picking us up and, unfortunately, her car was only a 2 seater and couldn't carry us both to the hospital. I suggested we get a taxi, but with her hovering, the last taxi was taken before our eyes. So I asked, and someone said just turn left and you will find more taxis. But the second left didn't look right, so we kept walking on the sidewalk. By this time I was beginning to find my role in the process... Soon a taxi drove by. We hailed it and we told Rosemary we would see her at the hospital.

Jerri wanted to talk to Dr. Lorigan before we went to see Robert. He rushed into the hallway and we agreed to meet him during his 2 to 5 clinic. The hospital was Victorian, ancient, the nurses called sisters. There, turning in from the hallway, was Robert in a small room across from the sister's office. Glass walled, a TV and VCR, a double-sash windo in stone blocks looking into the alley. We had to wash our hands before we went in. Felt good after the train. Just.

The first thing Jerri said was "you've grown chest hairs." They talked about bank accounts and things in his room and transfusions and platelets. They spin platelets out of the donor's blood and put them in packets, then they're injected into Robert's blood. He'd just had platelets, and was scheduled for a transfusion shortly. Robert said he did want some nice pajamas, since he'd be in the hosptal for a year. Neither of us corrected him, time enough later. The treatment-to-cure is about a year. 85% chance of that.

Robert told how he was playing snooker Thursday night and they were all being Dudley Moore silly, saying cancer of your cuetip, cancer face, cancer the ball, and a girl said "You shouldn't say that." That's funny, it was only last Thursday and now here I am and leukemia is a cancer, isn't it?

We left to go to the University office for insurance arrangements. Jerri called Buzz, Robert's father, and told him he might have to share a £6,200 transportation bill, although they were trying to get insurance to pay. The British Healthcare and Ambulance of St. John needed a guarantee of the £6,200, so Colin Lyas and Dr. Rogers faxed a University of Lancaster guarantee. The trip was to begin at midnight that night. An English Navy doctor would accompany Jerri and Robert back to London in the ambulance and then onto a British Airways jumbo jet to Seattle. That later changed to Pan Am -- leaving Thursday morning at 10 AM; the University of Washington already had a bed for Robert. Dr. Lorigan's job -- in addition to medical things -- was to coordinate all the ambulances, airfares, medical accompaniment and to browbeat/convince the insurance company that Robert really needed to be in Seattle for his treatment. Then Jerri and I went to Robert's room.

The University is only 30 years old and quite modern in architecture. We met a porter who had to tell us how awful she felt about poor Robert. She meant quite well but I was relieved when she finally left us alone in Robert's room, a sort of concrete bunker affair, but pleasant with shelves and wardrobes. More sobs, the first in hours. Jerri decided to leave the sweaters and coat, but took the Lynda Barry jean jacket, two journals, tapes, a sweatshirt. Then Simon came by, such a stricken young man. He wanted to know if he should give Robert's bank account money to Jerri or Robert. Jerri said Robert. He said he'd have to mail some, if that was all right, and Jerri said yes. We closed the door behind us, our arms full of Robert's few things, and walked back along the concrete hallway. We passed rooms and students and showers and loos and it was such a journey. The students knew us, I think.

Then Colin again. He took us in his borrowed mini out to his 200 year-old house in a village called Hornby, a Danish name meaning Horn Place. Rosemary was there, no longer wearing her neon green jacket. She got out her best brandy. Colin says she hoards it -- he buys it duty-free on his many travels. The ceilings were at least 12 feet high and Rosemary had a good smelling coal fire going in the wall grate, 3 dishes of salted peanuts, and three glasses. She wasn't drinking because she would be driving Jerri back to Lancaster at ten that night for the ambulance journey. 2 glasses each in fairly quick order, sitting on a flowered rug, warm fire.

Rosemary brought a cookbook and wanted to know if she should make a paella for us -- she and Colin were going out to dinner. I said no, we'd fix our own, besides we weren't really hungry. She said Oh. I want to. So I let her. Jerri fell asleep by the fire. Alone, we ate the paella, surprised that we were so hungry, smoked a couple of their cigarettes, talked and cried and cried. Then Jerri went to take a shower and I slept. Jerri put her same clothes back on and she and Rosemary drove off in Rosemary's Fiat about 10:30. Colin and I sat by the fire philosophizing until Rosemary returned.

I will need to fill in more details about Colin and Rosemary later. He was the advisor for all of the Carleton students at Lancaster. She came with us to some of our excursions around England -- the Lakes District, York, everywhere. She wrote two letters to my Mom in March and April (perhaps more, for all I know). A wonderful, hospitable, supportive couple.

Rosemary died of lung cancer no more than six months later, before the summer had ended, before I was completely out of the woods myself.

Transition

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We spend maybe two days in the London hospital, a repeat of my time in Lancaster. Mom works out the details behind the scenes while I continue to get some much needed rest. Antibiotics and platelets and blood transfusions have done wonders, and I'm feeling better than I have in weeks. A temporary salve, to be sure, but it feels good nonetheless, to not be sleeping for hours but still wake exhausted, to cough and sniffle and wipe blood from my gums. I know that these are temporary things, but I still don't have a good idea about what's required to make them go away permanently, don't have an accurate mental picture about how one treats leukemia.

All I care about, now, this last day I'll be in England -- I still haven't returned, thirteen years later -- is getting on that plane back home.

A Bad Joke

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There were so many differences between my two ambulance rides to Heathrow that it is impossible to draw a fair comparison between them. Most importantly, absolutely nothing went wrong -- finally -- on the short trip from the London hospital. No blood transfusions, no emergency stops, no rush hour sirens blaring, and best of all, no sudden departures due to stabbing stomach pains.

Because we were already so close to the airport, the airline doctors verified that I was "fit to fly" before we'd even checked out of the hospital room. Memories are foggy on this particular point: it is possible that this was yet another behind-the-scenes activity, where an actual checkup was not required. Or the airline physician may have simply been one of many faceless white labcoats that I met in England. No handshakes, tight smiles, professional and courteous (friendly, even) while ticking down the clipboard with a ballpoint pen.

The point is that our ambulance did not take us to the little-known Heathrow infirmary this time. No. Instead, we drove right onto the tarmac, right up to the plane. Wish I'd had a better view from the sheltered back of the vehicle, to see if there were chain link fences or barbed wire, or if it was just like any other service road. Luggage trucks and food trucks and me, all getting ready to be loaded directly onto a freshly refueled 747.

While my health may have been vetted by the airline, there was still the simple matter of airport security. Even as far back as 1990, the UK took their airport security pretty seriously. A uniformed guard had been scheduled to meet our ambulance. He wore an army uniform, I think. Something much more significant than the airport security I'd been used to: camoflauge fatigues, thick black boots, and an M-16 slung over his left shoulder.

The four of us had already shuffled onto the damp pavement -- Mom, the RAF doctor and nurse, and yours truly -- stacking suitcases, overnight bags, cardboard boxes, rugged tackle box looking things, and two small coolers.
Paperwork exchanged hands. Passports, tickets, medical references, signatures from Pan Am. The guard slowly looked through these. Serious. Sharp. Mom's passport was brand new. He examined everything carefully.

"What's in the coolers?" he asked. A formality, I think, a casual question about the piles of obvious medical supplies that had formed nearby.

"Plastique," my doctor said.

Silence.

More silence.

The guard didn't exactly straighten his posture -- he was pretty straight already -- but he noticeably stiffened. "Pardon me?" he asked.

"Umm..." my doctor began. "I was just..."

"Open them," the guard said. The M-16 has somehow moved into his hands. He used the barrel to point to the blue and white coolers.

My doctor continued to stammer, obviously medical supplies, just joking, blood, see, in case he needs another transfusion, this one, too, I'm sorry, really really sorry, just a bad joke, nothing here but medical supplies, obviously.

I don't know if I was standing, or if was in a wheelchair (it's entirely possible that Pan Am would have wanted to "load" me, precious cargo, to make sure insurance provided for any unfortunate personal mid-air tragedy). Either way, my head was certainly down, eyes most likely closed, please, please, please whispered repeatedly under my breath.

Please let us get on this plane. Please don't let a lousy joke prevent us from boarding. Please don't send us back.

"I shouldn't need to explain to you the gravity of what you just said."

The rest of us were on the sidelines, watching the conversation unfold. Nobody else needed to bother responding. "I know," my doctor said. Penitent. Remorseful. "I really didn't mean it. It was just ..."

"Just a bad idea."

"I know."

"Don't let it happen again."

Please, please, please.

"I won't."

"Then go," the guard said, left thumb pointing back over his shoulder. "Go."

Thank you.

Fishbowl

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We entered the plane through a door about halfway down the fuselage, somewhat behind the wing, on the left-hand side. Do airplanes have port and starboard? If you stood facing the front of the plane, we came in from the left, well past the main passenger entrance near the nose.

It was a big plane. Not a 747, but wide enough that there were two aisles. Two seats against the windows, a wide row of six (or maybe eight) in the middle, then another two window seats on the opposite side. Immediately across from the door was a station for the flight attendants. It stretched across the middle of the plane (access to either aisle). When we first arrived, two flight attendants were busy putting away meals, flipping switches on a long row of coffee pots, assessing inventory for the flight ahead.

One peeled away to greet us. She wasn't sure whether or not to shake my hand, but welcomed all of us aboard. She smiled, said she'd been expecting us. Her nametag said "Emma." She extended her right arm outward, like Vanna White pointing to a phrase or a place or a proper name.

When we'd been told that there would be six seats just for me, I'd envisioned that I'd have an entire middle row all to myself. Push up the armrests, grab some pillows and a blanket, kick back and enjoy the flight. This wouldn't be the first time that reality didn't meet my expectations. Of course, it helped that I didn't have a clue what to expect in the first place.

Who knew that they could simply remove seats from the aircraft? Emma had pointed to where the three rows of window seats used to be. Looks like I'd be seating in the emergency exit row. In place of those six seats, a kind of temporary bed had been installed, a place for me to lay down, sure, but much more conspicuous than I was expecting. We also had four seats across the aisle from the bed, two and two, so if I felt like sitting down (sitting up?) I'd be able to take one of the seats next to mom.

None of the other passengers had boarded yet; we were given plenty of time to get settled in. I tried to figure out a way to get comfortable. I wasn't tired. I was excited. Thrilled, almost, that I was going to be going home. Six months in England -- the friendships, travel to Europe over Christmas break, pool tournaments, volleyball matches, hikes in the Lakes District, days and nights packed with great memories -- were drawing to a close.

That's on the one hand. On the other, well, that whole leukemia thing.

Lost in thought, I didn't pay much attention to the first passengers walking past our seats.

Correction: walking past my bed, and the three other completely normal looking passengers in the seats across from me. Not that many people would notice Mom, or my doctor, or my nurse. If they paid any attention to anything other than their shuffling feet, or the numbered seats, heads would invariably turn in my direction.

And why not?

It occurs to me only now, years later, that everybody else I'd met up to this point had been professional and courteous. It was their job to accept me at face value. Doctors and sisters from the hospitals, ambulance drivers, lab technicians, security guards, even the flight attendants didn't bat an eye at my situation. And it wasn't as if I was gaunt or stricken or oozing puss from my eyeballs or anything. It was probably just the opposite: I was looking fit and healthy yet found myself surrounded by all sorts of medical apparatus. If I was a passenger on our flight, and I needed to walk past myself to get to my seat, I'd probably be asking the same questions.

What on earth is wrong with him? Is he contagious? Why do I have to sit so close to him?

Or, less cynically, but something that probably made me feel even more self-conscious, more like I was a freak on display for the rest of the passengers, were the real comments -- not imagined questions in the faces of strangers -- shared more than once after we were airborne, when people felt compelled to talk with me: you poor, poor, dear.

Mom got this one, too, apparently, during conversations she had with strangers while I slept unawares. She looked a lot worse for wear than I did, stress and fatigue piling on.

What Are The Odds?

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There is this trick I used to do when I would fly to Carleton. Back in the day, airlines actually used to show movies on flights that lasted a few hours. Getting between Seattle and Minneapolis half a dozen times a year meant a decent amount of traveling between 1987 and 1992. More often than not, I was bored to tears on these flights. Sometimes I'd fall asleep, but even that usually only lasted until takeoff. I enjoyed the rush into the air, buildings and trees and lakes and mountains all dwindling below, banking gently to either stare at the sky or the ground, depending on which window seat I had. I probably could have read a book, or done crosswords, or listened to tapes. Still wouldn't get me through the two to three hours between Minnesota and Washington State, though.

So they had movies. Movies came with headphones. Headphones cost money. I didn't necessarily pinch any pennies during college, but I never seemed to think it was worth spending $5 for a pair of cheap foam throwaway headphones just to watch an edited-for-airline travel movie (maybe if I had been pinching my pennies, I would have had five bucks to spare). And this was well before the headphones for my Walkman would have fit the connection in the arm rest.

The trick, then, was this: carefully rip out any page from one of the in-flight magazines. Glossy paper always worked best. Using the tray table as a firm surface, carefully (carefully) roll the paper into a very tight cone. It must be precise. You've got to keep the corner tight, or else you won't be able to jam it into the headphone jack. Crank up the volume. Insert cone. Keep a hand on it (and an eye out for the flight attendants) because you never know if they're gonna get pissed at you for "stealing" sound for the movie. It doesn't make for the best speaker, but it's free, and movies tend to make a lot more sense when you can actually follow the dialogue.

All of which sets the stage for the unexpectedly cool gift I'd received from Emma just before takeoff.

"Here," she said, handing me a pair of airline headphones, still hermetically sealed in clear plastic.

I started to protest. I didn't even have any clean clothes -- wearing ratty red sweats and a certainly very stinky Pendle College tee-shirt -- let alone a spare five bucks or so for the headphones. Hell, I wasn't even sure where my wallet was at this point. Somewhere in one of mom's bags, probably.

Emma smiled. "Please," she said. "It's on us. You can just have it. It's a small thing, really."

Outstanding. Little things really do make a difference, and this was such a stark contrast from how I usually experienced in-flight movies. I couldn't wait to find out what movie they'd be playing as we flew west across the Atlantic. Besides, after everything else that had happened up to this point, it was nice (really nice) to get a free movie out of the deal.

The movie turned out to be the critically acclaimed 1989 hit, The Bear. It's a moving tale of an orphaned bear cub that features almost no dialogue. One of only very few mainstream movies over the past ten or twenty years that relied so little on voices to tell a story. That you can understand what the bears are thinking -- without relying on voice-overs or onscreen text or other filmmaking tricks -- is actually a testament to the quality of the movie. If you turn down the sound completely (or watch it without airline headphones), you'd miss out on the score, and some conversations between the hunters, but you'd still be able to easily follow along.

In other words, everybody on that flight was able to watch and understand my free movie.

Not that I'm still bitter about it or anything.

Coincidence (Part I)

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There's an element to the story that, for a number of reasons, is one of the few things I actually remember with a great deal of clarity from the first couple of weeks. And, for a number of different reasons, I've been wavering on whether or not to write about it.

It's not an integral part of the story. It doesn't advance the plot. It doesn't necessarily add any new insights into my character. Speaking of characters, it does introduce a new one. There is a significant amount of coincidence in play here, a strange twist of fate that has me just beginning to realize how tiring it's going to be explaining everything to complete strangers only to chance into meeting a fairly good friend from the previous summer.

Okay. Maybe she wasn't exactly a good friend, but she was pretty damn cute. No, cute's not even close to being the right word.

The summer of 1989 was something of a whirlwind for me. Most of my days were spent bussing tables at a Mexican restaurant (then Casa Lupita, now, if it still exists, probably something different) with weekends and evenings a vain attempt at saving money for my trip to England. There were lots of movies and dates and parties and maybe just a smidge of underage beverage consumption.

Near the end of the summer, there was a road trip down the length of I-5 with Scott, Jeff, and Jason in Scott's beat up (but always faithful) Plymouth Horizon, including a brief night or two to visit a girl I'd met at a debate tournament in high school years prior, and who I'd somehow kept in touch with after she started at USC. Then onto San Diego to stay with old friends of Scott's family and the requisite trip to Tijuana.

Like I said, it was quite the summer.

But I seriously digress.

Kris Redding was a cocktail waitress at Casa Lupita. I'm not exactly sure how old she was. At least two years older than me (otherwise she wouldn't be serving booze) but more likely five or six. So she most definitely was not cute.

She was a goddess.

She was this gorgeous, absolutely unattainable thing, which made the flirting all the more enjoyable and memorable. She was dating one of the bartenders, so nothing, clearly, was ever going to come of it. As it happened, I dated a few different girls that summer, all much closer to my age, all equally attractive. That's the way it works: boys date girls. But there's absolutely nothing wrong about holding out hope that maybe someday, somehow, that gorgeous, way-out-of-your-reach cocktail waitress -- an older woman would fall desperately, madly in love with you.

Near the end of the summer, she quit working at the restaurant. Time for her to move onto bigger and better things, starting a career she hoped would allow her some opportunity to travel.

Maybe you can see where this is going.

She became a flight attendant for TWA. She wasn't working on that long flight back from London, but she was on board. I forget what they call it, when you've been working for awhile out of one city (London) and you're heading back to another (Seattle) so you just grab one of the extra seats. Whatever the case, I absolutely was not expecting to bump into anybody I knew on that flight, let alone somebody who still, at that point, had the ability to have almost instantaneous effect on my body chemistry.

Except for the fact that nothing every came of it. After I explained to her why I was flying home, and why I had a bed instead of a seat (and what little I knew of what was coming in the months ahead) we exchanged phone numbers and promised to keep in touch. To her credit, she did call me later that summer. We scheduled a date during one of the weeks when I would be out of the hospital, recovering from the chemo, and her bartender boyfriend picked me up so the three of us could take in a Mariner game. The game was great -- both of them were infinitely cool -- even though baseball in the Kingdome was always a little stale, and the flickering fluorescent lights would give me headaches.

And that's it.

I don't think I heard from either of them again. Kris never did fall madly in love with me, choosing instead to pursue things that mattered in her own life. Again, that's the way it works. Paths intersect and maybe run together for a little while and then they diverge again.

It was such a surprise -- the last thing I was expecting after a weeklong string of last things I was expecting -- that I've never forgotten it. But it's also a loose end. My internal editor rails against such things, browbeating me even as I write this, asking so many frustrating questions.

"Why? Does it advance the plot? If it's not advancing the plot, are we learning more about the main character? Will it provide a break from plot and characterization, a chance for the reader to catch their breath? Remember: no unnecessary words. Write like a sculptor, removing all the bits of clay you don't need. So why is it here if it goes nowhere?"

Because it happened, I tell him. Because it happened and I actually remembered it and there's so little that I do remember that I want to write everything down.

"Don't let the truth get in the way of a good story," he says.

Duly noted, I tell him, keeping it to myself that I'll have to work on his attitude. Everything stays. We're gonna kitchen sink this thing and only after it's all done will we know enough about the truth to determine the relevancy of a particular memory (or set of memories).

In the meantime, I will have taped a favorite quote onto the side of my monitor:

"Beauty is truth, truth beauty," -- that is all ye
Ye know on earth, and all ye need to know.

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A Few Notes

rkb in 1990
2010 marks my twentieth year in remission from AML. To celebrate, I will be training for and running two marathons with Team in Training: Twin Cities on October 3rd, and Dublin, Ireland on October 25th.

I'd originally started using this site to tell my story -- roughly eight months of treatment in 1990, as well as the impact leukemia had on me in the years that followed. Much of that story is still available through the "Table of Contents" below (or through the site archives).

But now I will also be writing about my training and fundraising goals, progress, as well as other thoughts, feelings, and experiences along the way for this milestone anniversary.

 - Robert K. Brown
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