3. Induction

Survival Rates

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Thank God there wasn't much in the way of an internet when I was initially diagnosed. I don't know how it might have changed my attitude if I'd been able to some serious research, if I'd been able to pull up survival rates at will.

(From The Leukemia & Lymphoma Society: the overall five-year survival rate for all patients with acute and chronic leukemia is 44 percent. However, when you look at the type of leukemia that I had -- acute myelogenous -- the five-year survival rate is only 14%.)

Or maybe I would have been fortunate enough to stumble across Stephen Jay Gould's The Median Isn't The Message, validating what I'd felt from the very early stages, that survival rates are a highly personal thing.

It is a natural question to ask. When Dr. Gorst was patiently explaining the disease to me in Lancaster, I reached out for something solid. What are my odds? Numbers are facts. They are concrete. You can lash yourself to them to help weather the storm.

I remember Dr. Gorst telling me that leukemia had an 80% survival rate. I did not push back. I never asked for clarification: eighty percent of what? Survival for how long? Is this for all leukemias, or my particular sub-type? He may not have actually even given me those numbers, based on research I've done since.

Dr. Collins gave me a different number, later, when I'd asked her the same question in the middle of my first round of chemotherapy. She gave it some thought. She paused before answering. I was young, and fit, and strong, but it had been weeks since the last of the chemotherapy, and my body had still not shaken it off. My marrow was not recovering.

"I'm going to be completely honest with you, Robert," she said. I want to think that she held my hand, but I doubt that she did. At least not then. Let's say that she came close to my bed and half-stood, half-rested against the edge.

"You are asking me what I think your chances are, right?"

I nodded. I'd recently received some demoral. It helped with my many fevers, but it also made everything feel fuzzy. I rubbed my face with my right hand, starting at my forehead, a slow swipe down to my chin, lingering over the bridge of my nose. I wasn't sure if I could feel anything.

"You might hear many different numbers," she continued. "There is always some amount of debate going on, some different way to spin the numbers. But the numbers, ultimately, are meaningless. It boils down to fairly straightforward math.

"Your chances are not 20% or 50% or even 80%. You either survive or you don't. Period. Today you are surviving. Yesterday you did the same thing. Every day that you continue to survive you have a one hundred percent chance of survival. Your odds, your personal chances of survival, are at 100%.

"Does that make sense? Does that help?"

I nodded again. I still couldn't feel my face, so I checked again to see if it was still there.

AML: A Simple Explanation

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Under normal circumstances, your body produces a steady flow of healthy blood cells. We'll keep it extremely high-level and say that you've got your white blood cells and your red blood cells. There are a few more than that, but all we're concerned about is ability to fight infection (white) and ability to clot (red).

It's your bone marrow, actually, that does the production. Through some process far beyond my understanding, healthy bone marrow produces a healthy string of different types of blood cells, as appropriate.

Somewhere along the line -- whether it's genetic, or environmental, or some combination of the two -- the bone marrow of a patient with leukemia will begin producing immature blood cells. They're not nearly as effective as the stronger, healthier cells. Certain subtypes of AML will tend to see certain symptoms, based on which production line gets thrown most off-kilter. All will share some common symptoms, mostly related to the growing number of white blood cells in the body that aren't able to do their jobs: fatigue, lingering sicknesses, a general feeling of malaise.

The subtype that I had (M3, now classified as APL, or Acute Promyelocytic Leukemia) is also generally recognized for a very low number of healthy platelets (a kind of red blood cell) which helps blood to clot around wounds. With these patients, you will see a great deal of bruising and bleeding.

Left unchecked, the bone marrow will continue to fill the blood stream with larger and larger quantities of malformed blood cells -- "blasts," to borrow a bit of medical terminology. There's probably some kind of accelerated curve, the greater the percentage of blasts, the more quickly they begin to crowd out the remaining few healthy blood cells.

Eventually (again, left unchecked) the patient will die from some infection that the body isn't able to respond to, or from some internal or external wound that simply doesn't stop bleeding. There's nothing left. You can't stop it. Your defenses are gone.

Leukemia is a passive-aggressive killer. It doesn't do anything by itself, other than undermine a body's ability to stave off something else. Deadly? Not me, Leukemia says. It was that other guy. The brain infection. Not my fault.

Sneaky, quiet, back-stabbing mother-effing disease.

Chemotherapy, Briefly

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It doesn't get much simpler than this: your body is very resilient. If you can get your bone marrow to actually stop producing the immature, leukemic blood cells, it will (fingers crossed) be able to recover, firing up the production lines again. A hard reboot, if you will. Slam it shut, any way you can, and in strange and mysterious ways, it will resume normal production sometime later.

The tricky part, then, is "turning off" the bone marrow. This is where chemotherapy comes in. Chemical therapy. Basically, pump a controlled amount of extremely high-dose chemicals into your body so that it can knock your marrow senseless. Kick the complete and utter crap out of it. Pummel it. Pound it relentlessly and trust that your body is strong enough to get back up off the mat when all is said and done.

Think you're tough now, Leukemia? Why don't you try a little daunorubicin on for size?

What's that, tough guy? You want a piece of me?

Let's see how tough you are after we throw in some Ara-C for good measure.

Too much chemotherapy and you're down for the count. Too little and you've got to get back in the ring again, already more than a little punchy from the first round. The chemo needs to be carefully measured and monitored. You cross your fingers, hoping that it comes back. With a dwindling supply of healthy blood cells, and no way, post-chemo, of producing any kind of blood cells, healthy or otherwise, you just hope that it comes back soon.

The alternatives? Well, we won't go there, because there really aren't any.

Accidents Happen

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I thought I could count on one hand the number of memorable accidents, cuts, scrapes, breaks, bruises I'd had while growing up. Without asking my parents or my sister for suggestions, the list stands at a pretty tepid six. A few things don't make the list, and the ones that do are nothing terribly spectacular, no repeated hospital visits, no accident-prone falls down staircases or ladders or grade school roofs, but a good thing to inventory nonetheless.

Here is the sum total of all my childhood mishaps:

  1. When my parents brought me home from the hospital, my older sister, all of twenty-one months, welcomed me to the family with a swift punch to my head. I don't think there was any permanent damage.
  2. Camping trip to Montana with Dad, Jane, and big sister. I'm two hands old, plus or minus a couple of fingers. Flathead Lake. I want to say that we were visiting with some college friends of Dad's, or maybe one of my step mom's relatives. There was a cabin on the hill, and a couple of other kids. Water-skiing was to be on the agenda later in the day. Summer, lazy, so hot it hums.

    There was a chase. A contest. There was a contest between the kids to see who could make it to the dock first. Oh, yes. A shortcut appeared between the pine trees, the shine of the lake straight ahead while the other kids took the zig and zag of the long gravel driveway. I'm running and ducking and weaving, but I've got the beeline. I've got the advantage.

    When trees grow next to steep drop-offs, roots will sometimes become exposed. This one formed a kind of hook that was low to the ground, but not so low that my foot didn't catch it. Balance was lost. I went ass-over-teakettle down the embankment.

    I landed on the driveway. Tiny pebbles embedded themselves in my hands. Skin peeled away from both knees. Believe me, the low steady hum of summer gave way to an ear-piercing scream. Which wasn't nearly as bad -- shocking, instantaneous pain -- as what came later with tweezers and peroxide and expectation. At least I'd been given a hand towel to bite into.

    Needless to say, I watched the water-skiing from shore.

  3. Lots of hills growing up in Seattle. Even though I haven't been to the childhood house (long since sold) in well over ten years, and I can't remember street names or numbers, the mental map is still clear: it walks me along the pipeline at the back of Nelson Jr. High, past the daycare Laura and I attended for years, across the street, past Cascade Elementary, then there's the hill, down, right at the T intersection, first left, first right, follow the street up and around to the middle of the block.

    But that's walking. Riding my back home from school is a slightly different path, because you want to get on the road, instead of the rumbling gravel of the pipeline path. You're flat for a little while as you pedal away from the grade school, but you know the hill is coming, and it's a good, short, steep one, so you pedal faster so you can coast downhill. Maybe there's a baseball card attached to the front spokes with a clothespin and you hit the top of the hill and you're a dirt bike, dropping down, not pedaling anymore, tucking, aiming for the corner (right at the T intersection), hoping you can blow through the stop sign because then you shouldn't have to start pedaling again until you get to the slight uphill to get you back home.

    Except for one day you're alert enough to notice that there's a car backing out of the driveway at the bottom of the hill. You don't panic. You're cool. But you brake hard enough to make sure you stop well before the driveway.

    And this is where you learn your first important lesson about inertia. A body in motion will continue in motion, or something like that, which simply means that your bike stops but you don't. Hands are gripped firmly on the handlebars. Everything pivots on the front tire. You, the back tire, everything gets lifted up and over. Your bike isn't much worse for the wear, but your nose is smashed and bloody after it hits the pavement.

  4. Second grade? Third grade? Maybe third. For some reason I'm hanging out after school with one of the cool kids. He's probably no more than a year older than me, but he's got a skateboard, and he's older, and he's the cat's meow. He's Arthur Fonzarelli to my Richie Cunningham.

    The layout of the school isn't all that important except for the fact that the playground -- the asphalt covered play area with basketball hoops and four-square courts, just next to a couple of baseball fields -- was slightly downhill. Nothing huge, but more hills. A recurring theme that I didn't think existed.

    So I'm gonna be the cool, kid, right, and the shortest version is that I'm all experienced and cool (that's just a little white lie, between you and me) and I can ride that board right on down that little hill because that's the kind of thing I do in my sleep (another harmless little untruth).

    The longer version is that I had enough balance to make it to the bottom of the hill. Problem was that I'd picked up some pretty good speed by that point, and I wasn't sure how to stop. Somewhere in the middle of that nice stretch of asphalt, I flopped. My right arm flopped harder than the rest of my body. When I looked at it later, I could see two bones that were in places I didn't expect them to be, just below the inside of my wrist.

    It didn't hurt. I didn't cry or scream or run. But you should've seen Joe Cool. He was absolutely freaking out. We're walking back up the hill together and he's asking me what I'm gonna do, suggesting -- seriously freaking suggesting -- that I just walk up to a wall and hit it in the other direction so the bones go back where they're supposed to belong.

    You're not gonna tell, he asks. Whaddya gonna say? Whaddya gonna do? More concerned that he might get busted than about my busted arm.

    He drifted off into the permanent role of bit player in the story of the only broken bone(s) in my life, while I steadily (in shock, no doubt) marched to the office, where my arm was wrapped in a makeshift splint consisting of the Yellow Pages and lots of twine.

    I only remember two other things about that broken arm: it itched like crazy, and when we visited my cousins in California that winter, my cast was wrapped in a plastic bag that didn't really keep the water out very well, but helped exacerbate the unbearable itching during the drive back up I-5.

  5. Across the street from my grade school was the day care where Laura and I spent countless hours. Single working mother, in the seventies, both sets of grandparents one state away. I'm pretty sure Mom didn't let us stay home alone until Laura was at least thirteen. But this one isn't all that significant anyway, except that it was my first (and only, at least until Lancaster) ambulance ride.

    There was this great play area at the daycare. Swing sets and a couple of basketball hoops where we would pretend to be the Sonics versus the Bullets (everybody fighting over who got to be Jack Sikma), and just past that, stretching the length of the day care, a wide field about the size of a football field, surrounded by a low chain-link fence. The woods probably aren't there anymore, but neighboring trees spilled through the fence and were allowed to create a small wooded play area just next to the grassy field.

    Whenever we played Capture-The-Flag -- which we did quite often in the spring and summer, when we weren't idolizing local basketball players -- the coin toss was mostly to determine which side of the field you got. It was much easier to defend the flag in the wooded section then the barren grassy open field.

    So one day I'm on the side without the advantage of the woods. We're strategic. We're crafty. We've got over half their team in prison, and time is running out for outside play, so we decide to rush the other team. Somebody's gonna get the flag.

    But the other team is crafty, too. They've decided to make up for their lack of players by using the natural defenses of the terrain. Or, as it applies to my childhood injuries, some anonymous kid had decided to bend back the low branch of a tree, waiting until some anonymous somebody (me) made a foolish attempt for the flag.

    Not only did the branch knock me flat on my ass, but it cut into the skin just above my right eye. There was a lot of blood. I held both hands firmly over both eyes, probably crying unintelligibly. I doubt that I was willing to move my hands an inch, even while the staff at the day care pleaded with me to see what had happened. Faced with a kid who was covering his eyes with bloody hands, they quickly called for an ambulance.

    There were stitches, but no permanent scars.

    I remember thinking it was pretty cool to be driven to a hospital in an ambulance. I don't remember much about the actual stitching process.

  6. Both of my daughters think this last one is hilarious. Only eclipsed by the story about Auntie Laura causing serious damage to her knees after she ran into a tree while skiing, with me unable to explain to my parents where she was any better than a weak gesture up the mountain, up there somewhere.

    Ahh. The humor of decades old pain.

    Laura and I are tossing a baseball back and forth in the back yard. She played C. Ferociously proud of her ability throw out runners trying to steal second, she never wanted to practice with a softball. I played CF, and was equally proud of being able to make the throw to home without needing to hit the cutoff man. Suffice it to say that we chucked the ball pretty hard to one another. If your palm stung when you caught the ball, you wanted to be able to sting back. Accurately. Off-target balls were BS.

    This day, Laura and I both remember clearly, we were sent outside in order to not disturb Mom. She'd already managed to put herself through school while raising two kids alone. I'm not sure what it was that she was working on or studying for, but I distinctly remember our collective reluctance to disturb her after the accident.

    It goes like this: I call timeout. I'd like to say that I shouted it, made it so obvious that my sister couldn't have missed it, but the truth is that I probably just muttered "time" under my breath so I could quickly tie my shoe and get back to playing catch.

    My sister had an absolute cannon of an arm when she was thirteen.

    "Watch out!" she yelled, after she realized that she'd thrown the ball back to me while I was still bent down over my laces.

    Did I mention accurate? To be required to move your mitt was the greatest insult. If you're gonna throw from home to second, or from center to home, the least you could do was be on target with your throw.

    It all happens in slow motion.

    It's hilarious.

    Laura yells at me to watch out.

    I don't know what I'm supposed to watch out for, so I straighten from my crouch. Still one knee down, one foot flat on the ground, loose laces halfway tied, but my back is straight, head up, ready for anything. Maybe it would have been better if Laura had yelled "Duck!" because then I wouldn't have been watching out for the baseball that clocked me but good.

    The accurate, hard-thrown baseball hits right where my mitt would have been, directly at my right eye. It's a good thing there's bone there. Bone immediately above the eye, nose, cheekbone. A triangle that absorbs the impact. Bruising was immediate, I'm sure.

    Both of us were more worried about breaking the news to Mom -- disturbing whatever work she'd been focusing on -- than assessing the damage. I stood out of sight on the back porch while Laura rapped on the sliding glass door, trying to get Mom's attention. Once she had it, though, we were quickly off to the hospital.

    Beyond the obvious humor of the warning that turned into the reason for the injury, the story is also memorable for the response from the late-seventies doctor after examining my X-rays. Sexist jerk. First, he told us, there is no way that a girl could throw a baseball so hard to cause this kind of damage. Second, why on earth would a girl be throwing a baseball anyway? Third, Mrs. Brown (Ms, thank you very little), is there anything you'd like to tell me, off the record, about this particular injury?

    Ask either Mom or Laura about my black eye, and to this day they'll get pissed about the arrogant doctor and his assumptions about both of them. Me? Great shiner. Too bad I was too young to parlay it into a little sympathy from members of the opposite sex. That would come later, while playing Ultimate at Carleton, taking a Frisbee in the face that was meant to go about 60 yards past my head.

That's it. Black eye. Cut on the forehead. Two broken bones in my wrist. Broken nose. Wicked skinned knees and gravelly palms. An insignificant blow that illustrates very early sibling rivalry. Maybe a few more, here and there, certainly, but nothing, really.

Nothing but nothing.

Close to Home

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Grow up in the Pacific Northwest and you're afforded a built-in sense of direction. At least when the sun is out. Tourists don't necessarily know that the craggy jagged collection of almost always snow covered mountains in the distance are the Olympic Mountains. Or those other hills -- they must be hills, right? So clearly dwarfed by Mt. Rainier, or even Mt. Baker further north? They might not know at first sight that these are the Cascades.

Newcomers look out and see just a bunch of indistinguishable mountains. Both ranges run north and south: the Olympics to the west of Seattle, and the Cascades on the opposite side, creating a massive natural fence between the western and eastern halves of the state.

You grow up around these things and you always have at least a halfway decent chance of knowing where you're going. They are built-in compasses. You know the differences. You know that you may not be able to remember whether it's Pike or Pine that runs one way toward the water, but you will always be able to easily figure out where the water is, based on your view of the mountains.

I never knew how much I'd missed them -- how much I missed their constant presence -- until my freshman year at Carleton. It's not that Minnesota is flat (look, my Midwestern friends would tell me, just a little defensive, there are hills all over the place) it's just that nature opted for ten thousands lakes instead of ten thousand foot mountains. And the rolling hills that make up the miles of farmland surrounding Northfield are a poor substitute for even the non-mountainous ups and downs in and around Seattle. Parking brakes aren't necessary in Minnesota; you don't even need to learn, counter-intuitively, that the wheel points into the curb when you park uphill, away from the curb on the downhill.

I suppose it's the same way with a lot of things: when you grow up with mountains, you don't always notice when they're with you, but it's immediately apparent when they're gone. There's something not quite right with an empty horizon.

To this day, I'm always alert for that last hour or so before landing at Sea-Tac. You're low enough to see the tree lines, the dark deep water of alpine lakes. Look left and Rainier dominates the view. Adams and poor, broken St. Helens peek out, too, with Hood visible further down the line.

The mountains bring you home. They usher you down the I-5 corridor, landing safely a stone's throw from Seattle.

Home

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We waited until the rest of the passengers disembarked before we even thought about getting off the plane. Customs officials knew about our arrival and were going to meet us on board. What little luggage any of us had was stowed either immediately above or below our seats, so after we made sure that my doctor wasn't going to make any lousy jokes about explosives, we made our way off the plane.

Either the hospital or the airport had provided a wheelchair that was waiting just outside. I wanted to walk. I was more than capable of walking on my own. I didn't need a freaking wheelchair. Seriously. Two arms, two legs, a decent night of sleep. What did they think, I was sick or something, that I couldn't manage a walk through this airport that I'd been in and out of more times than I could count?

It was probably a look from Mom that did it. Or maybe I took a look at her when she said please. Where landing had been a kind of homecoming for me, a missing piece rolling softly into place --comfort, safety, stability -- it was clearly something much different for her. She looked even more exhausted than she did in London, which I wasn't sure was possible.

Did she push me slowly up the ramp? I think it would have been important for her, to have made the trip to England and back to get her only son, that she should at least be the one to bring me to the rest of the family. I would have preferred to push her. But I think I understood: there are times when mothers need to take care of their children.

I'm in the wheelchair and Mom is behind me and somebody else is carrying our luggage and the doctor and nurse are maybe a respectful few feet behind us, discussing what sites they want to see before they need to return to England.

But the rest of it is like walking through a fog bank, or into a bright light.

My sister was there, but I don't remember what she was wearing, or what she said to me, if she was happy or sad. Dad, Jane, Paul were all there, too, I'm sure. Of course they were. I'm stretching to remember if Aunt Darlene was waiting for me, too, because I don't know if she'd moved up from Portland or Pasa Robles or wherever by this time. She might have been, closing the tight loop on immediate family in the Seattle area.

What did we say? Were their hugs? Kisses? Did I put on a surgical mask before I left the plane, like the one I'd worn when saying goodbye to my friends in Lancaster? Was there small talk, or were we all very serious? Did people take turns pushing me? Did anybody comfort Mom? How could they not notice how much the trip had taken out of her? Was there anybody else in the airport? Old family friends or buddies of mine from high school? Did I try to crack a joke first thing, to lighten the mood? What actually happened in those first few minutes after I'd finally made it home?

You're supposed to remember these moments, these watershed convergences of life stories. So many separate threads coming together, winding around my experience. This is one of those handful of moments that are supposed to indelibly burned.

But it's not.

Not for me, anyway.

Sketching in the Details

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Dad and Jane help fill in some blanks:

You came off the ramp on a gurney, not a wheelchair, and you were white and the sheets were white and so was the pillow. In fact, your hair was the most colorful thing about you, which isn't saying much. I remember very vividly, because we had been waiting for you to deplane for 14 or 15 years or so -- well, maybe only 10. And we didn't know what to expect. You did want to walk, but the airline position was that, having flown you in a bed, you weren't walking off. Probably related to liability suits or maybe to special fares for the critically ill.

Laura was certainly there, and I think she was wearing her black leather jacket, because she wore it everywhere until she got hold of your distressed leather flight jacket. Paul was there, but as far as I recall Darlene was not and no friends etc -- just family.

You were wheeled out by some sort of airline attendants, and Jerri walked behind looking quite as exhausted as you suggest. You, however, were grinning from ear to ear (obviously no surgical mask!) and incredibly perky. We were ready for the limp hand, the struggle to turn the head on the pillow. You sat up as far as you could and grinned and said, "Hi, guys!" You were immediately loaded into an ambulance (actually waiting at the terminal), with your mother, and led a parade of cars up to University Hospital (at some distance, you had a head start). I remember joking about ambulance chasing, and how much you were probably enjoying it.

At the hospital we all gathered in your room. Aside from your funny color, you really were quite the jovial host. I think doctors had come to get samples and things before we got up there, because I remember that Paul took Jerri home to get some rest, and we stayed with Laura and visited with you. You wanted pizza, so we went to the Northlake Tavern to get one and brought it back. You actually ate some, although you were starting to run down by then. Not sure if it was that day, or the next, that we discovered where all your blood had gone, and that you were marked like a black bottom pie, white on the top and dark color like grape jam on the bottom. Anyway, we also subsequently learned that you were so peppy because you'd had a nice vampire cocktail on the plane immediately before arriving so you were running on someone else's juice.

The other thing I remember, very clearly, is that nice looking doctor who I think was part Native American and was the resident? On duty. He spoke to us only in whispers and we thought that was so strange. Of course, we later figured out he was being comforting to what he saw as the soon-to-be-bereaved.

Was it the first day that we met Cindy? I don't think it was the first but I'm not sure.

Was it the first day or the second that a nurse came in, ruffled your hair and said, "Oh no, all that beautiful blonde hair." She explained that it would almost certainly come back brown. Laura gloated in best sisterly fashion.

And Mom:
First of all, I do think Darlene was there also, I seem to recall her. I know she was living in Seattle then because she moved up there at the start of your senior year at Lindbergh. I don't remember Scott or Blake being there or anyone else. They may not have known. I think it was just Laura, Paul, your Dad and Jane and Darlene.

Yes, the custom officials came on board and took care of everything on the plane.

Boy, I think the ambulance was on the tarmac and we took an elevator or something to get down to the ambulance??? Or a ramp??? You are right, it was important for me to push you in the wheelchair.

Hugs and Kisses??? Not sure, probably. I don't remember getting into the ambulance but I rode in back with you on a bed and one attendant. Not the doc and nurse from England their job was done when they handed you over to the ambulance crew at the airport. In fact, the medic was concerned about me.

I remember going up I-5 and Paul, and maybe Laura and Darlene with him in his car and your Dad and Jane in their car and they all somehow caught up to us and were following us up the freeway. I remember looking out the back of the ambulance as we drove.

I don't remember arriving at the hospital must have been the emergency entrance. The next thing I remember is arriving at your room, the hospital had everything set up. Cindy was there and some doctors including I think Dr. Collins. We all talked informational type of stuff for your impending hospital stay what it actually was I don't have a clue and I don't know how long I stayed. Paul took me home (must have had Darlene and Laura with us too) I went to bed and slept for 10, 12 hours if not more before waking up to go back up to the hospital. I became intimately familiar with I-5 that year.

One other thing I remember when Paul and I came back up to the hospital that next day walking in from the parking garage we commented on the tulips in bloom by the entrance to the hospital and I said to Paul I wonder how many different flowers we will see in this spot before Robert is well. I remember this because every time I walked past those flower beds I thought about the tulips we saw that very first time. Went through almost all the seasons from spring thru fall with the changing flowers.

All Turned Around

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The drive out of the airport was pretty much a south to north thing. Of course we didn't take the underground train to the main terminal, where hundreds of complete strangers would be able to cough or sneeze, and my low white blood cells wouldn't be able to do much about it. The ambulance would have been waiting for me not far from where the plane had landed. Keep contact with the rest of the world to a minimum. A service road out, then north to 518.

There isn't much to this road before it turns into 405. A cloverleaf interchange, plus some confusing HOV lane changes, three lanes splitting off into three directions, north, south, or continuing west. Further west would be the way home. Take 405 a few more miles until you get to one of the downtown Renton exits, then follow one of the main roads (usually Benson, but sometimes Petrovitsky) up the hill.

But this was a drive north. I will be receiving treatment -- whatever that means -- at the University of Washington Medical Center. Roughly the mid-point of Lake Washington, north and a little west of downtown Seattle. Not too far from Dad & Jane's house on Phinney. The University (or was it The Hospital) had been expecting me a few days prior, I've been told. They have everything ready. They have been waiting.

And so we turned north onto I-5. It heads uphill for a bit, then jogs down and to the right as it crosses the Duwamish River, settling in for a long valley ride north. Boeing Corporate offices, then Boeing Field on the left, with vast wide hangars and any number of 707s, 727s, or 747s just outside.

Not that I could see any of this. I was stretched out in the back of the ambulance. There were two small windows, one on each of the two rear doors. My view was limited to what could be seen through those windows, facing backward. I knew that we were running parallel to Boeing not because I could see it, but because the road was so familiar. Home for the first time in almost six months, my senses were heightened, ready to welcome anything recognizable.

The mountain is out. I shouldn't be able to see Rainier from this direction. We're traveling just a little north-east on this section of I-5, but I can see it behind us to the south-west, clearly, looming high above everything else. I'm fascinated by this unexpected view.

"It's just because you're all turned around," I tell myself. "If you weren't in the back of an ambulance, you'd never see it this way."

It's quiet. Pavement spins underneath. We're moving closer to the hospital, but Rainier barely seems to budge.

"I know," I finally respond to myself. "That's what's so cool about it."

My Room

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The ambulance took me directly to the University of Washington Medical Center. Sirens were not blaring. Traffic was light. The building itself a non-descript beige and grey and brown collection of buildings just across the street from Husky Stadium. Early spring flowers were planted in the boxes lining the circular drive.

Front door? Emergency entrance?

Probably we went in through the front. Too many sick people in the emergency room, besides the fact that this wasn't an emergency. I was expected. There was a room, somewhere, waiting for me.

Fast feet over concrete. Automatic doors opening automatically. Somebody in front of me, clearing the way, somebody else pushing from behind. Mom was in the ambulance. She is at my side, now, as we move swiftly through an open lobby. An echo. Feet reverberating across tile, now. A gift shop passing by on one side, an espresso stand on the other. People stand aside. Polite. Nobody stares. Nothing to see here. Move along.

The freight elevator is wide and deep. The walls are covered on three sides with a kind of dirty, padded quilt. It smells like a hospital. The whole place does. Whatever it is that hospitals smell like, closed windows, maybe, and cleaning supplies, and medicine, and whatever else that I never noticed when I was in Lancaster or London, this hospital has it. The doors close behind us.

And then we are up to the sixth floor and out and there is a desk with many people, working, writing, and I don't know how, but Dad and Jane and Laura and Paul are already here, too -- here with all of these fluorescent lights and worn beige or grey or brown carpets leading down a maze of hallways. There are smiles from strangers, polite, inquisitive, white coats and introductions and we've been expecting you's, a moment or two of hesitation, a collective we're not sure exactly who's in charge now, and then we're moving again, moving together down the nearest hallway, just two doors away.

It is crowded.

The room is spacious. It has a stretch of windows along the west side, a view of pine trees, of the stadium, of majestic mountains. There is a bed that extends from the middle of the south wall. There is a sink near the bed, and a private bathroom near the sink, and chairs and low benches and a small table on wheels and a wall-mounted TV. The room is wide and spacious and crowded.

We were outside but now we're inside. So many people standing at the edges of the walls, or at the foot of the bed, so many others coming inside with their faces and their hair and their smiles and quiet voices, asking questions, writing on clipboards, then out, then in again. The only place for me is the bed. It adjusts. There are motors, and a collection of arrows that point this way for up or down, this way for sitting up or laying flat. My bed adjusts.

It is a teaching hospital. I am to learn this later. There are people that will be constant -- Cindy, Anne, and Dr. Collins all immediately come to mind -- but there are many, many more that won't. There will be teams of doctors. These teams will rotate. They are learning. They will stand at the edges of the walls or at the foot of my bed, and their faces and names and white coats will blur.

It is a blurry foggy blur, so many people here, suddenly, so many people in my room.

Yes.

That's it.

Whatever else it used to be, this room is mine now.

Postcard From the Future

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We took a family vacation to Seattle at the end of the summer in 2003. Ten days in the Seattle area (three spent on Orcas island) with Melissa, Esmé, and Jasmine. We don't get back too often. In 1998, when our family was only the three of us, we decided to go canoing on Lake Washington. There's a rec center at the far end of Husky Stadium parking lot. A few bucks for the canoe rental, with paddles and vests for Melissa and I and this cute little wrap-around life jacket for then 20-month old Esmé. Sun, water, lily pads, mountains. Perfect.

We tried it again in 2003. Not quite the same experience.

We used two canoes, because they would only allow two people per canoe. Esmé and I went in one, Melissa and Jasmine in the other. We took photographs. Sun, water, lily pads, and mountains again. It wasn't long before we remembered that I'd always been the one to steer. Years of experience at summer camp, including one summer navigating around Orcas Island. Steering a canoe was as natural as riding a bike for me.

dad's eye view of the lake

It was a windy day. The wind was blowing hard from the northwest. It kept pushing us toward 520, toward the motorized boats heading in and out of the Montlake Cut.

I tried to coach Melissa a little. Paddle backwards to turn the canoe on that side, or, preferably, pull the paddle toward the side of the canoe, perpendicular, to turn it away.

Melissa would try to turn the canoe around. The wind would catch the length of the canoe, pushing her further away from shore. It was a strong wind. She would struggle to get the bow of the canoe to head straight into the wind. It was too windy. She was able to keep away from the large orange buoys that marked the boating lanes, but couldn't get the canoe turned around all the way so she could paddle back to shore. So she would stop, try turning other direction, swinging it all the way back around until the wind became a wall again.

We were both starting to get worried. I yelled across the water.

"Paddle harder. Paddle hard. It's hard work," I yelled. "It's a strong wind. You've got to paddle really hard."

She yelled back that she was paddling hard, as hard as she could.

"And stop yelling at me!"

We weren't out of the small bay yet, but we were close. We were certainly much farther out than I'd expected, and I didn't want to deal with being out on the larger expanse of Lake Washington.

I paddled up next to her until the two canoes were parallel, slowly moving closer until they were touching. Melissa was crying. My arms and back were sore from repeatedly digging into and back out of the wind. I told her that I'd get us back together. I would get us back to where the water was calm. Esmé leaned over in the front of our canoe and helped hold the two canoes together. Melissa grabbed on as well, at about the mid-point of our canoe, so I that I would have room to paddle on both sides.

I dug into the water. Leaning to my right, pulling hard, working both canoes against the wind, I finally managed to face the northwest shore. Switch the paddle to the other side, a few strokes to minimize momentum, then back to the right side, ready for the L-shape stroke that allows you to stay straight without switching the paddle back and forth so much. Ready to head into the wind. I asked Esmé to pick a spot on the horizon. Somewhere in front of us.

"The dark brown house, with all the windows," she said. "Next to the white one."

"That's our point," I told her. "Help me keep my aim. I'll be working on bringing us closer, so I'll need your help to keep us on point."

Jasmine piped up from the front of the other canoe. "I wanna help, too. I wanna do something."

I asked Jasmine to yell "stroke" for me. Melissa got her started. "Stir-oak. Stir-oak. Stir-oak." Our own little three-year-old coxswain.

Melissa and I apologized to one another -- repeatedly -- as we made our way safely back to shore. Sorry for yelling at you and sorry for yelling back and I was worried and I was scared. Together: I didn't know what to do. It's okay, now, though. We'll be okay

sassy jaz

Fact Is Fiction

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I wrote this story for English 46, a fiction workshop with Gregory Blake Smith. It was fall term at Carleton, 1991, one year removed from my final hospital stay. I'd experimented with capitalization and punctuation, stretching the author's experience with leukemia into something he had to deal with from the outside looking in.

It's not about me, okay, 'cause even if you knew what I did last summer, you're never gonna be able to tell now, what without capital letters or quotation marks. And, plus, even, the Dad's the narrator, not the kid with leukemia, so it's, like, so totally not about me or anything.

The original is still three-ring-punched into a dusty blue binder, pencil marks in the margins and at the end, sage advice from Professor Smith on storytelling:

Finally, be careful not to place the effectiveness of the story too squarely on the shoulders of the horrors of cancer. Ultimately, the value of this story must reside in what happens to the parents, how the fate of their son changes their ideas of who they are, and what life holds.
The earnest critiques of my classmates follow, generally positive, usually tripping over my clumsy experimentation. Why not just capitalize the letters? What's up with the numbers? You're not ee cummings, you know, just tell the story.

So here I am at another crossroads, raising an old experience up from the ashes, tugging, pulling, dragging the narrative forward. Plumbing the depths of my memory. Sifting through boxes in the top shelf of my office closet, leafing through cards and letters stored in manilla envelopes, reading a fiction I'd created thirteen years ago that, as far as fictions go, relied more heavily on my own experience than anything I'd written before (or since). Almost everything about Danny is me, from initial diagnosis, to his hospital room, to childhood accidents, to immediate early complications.

#6 is really me and Dr. Gorst in Lancaster. #7 is a phone call to Mom, and she had to cross much more than the 520 bridge to get to me. #8 is my room, with Dr. Collins entering, later, to talk with us. #9 and #15 have been detailed previously, and funny, in hindsight, to note that Danny also declined the suggestion to smack his broken arm into a brick wall in order to fix it.

Number thirteen is where old and new writing intersect, where I'm reading many of the same words I'd written then that I want to write today. It's pretty much all Danny, all me, between here and twenty-five, with the narrator sometimes Dad, sometimes, me, and the Hickman and the bleeding and the bruising on my chest, right arm, right side, lower back, massive purple and black bruises that kept growing for days. In one scene, Sue, the mother, says something that Cindy actually said, probably mid-April, with much more force. A few details are left out. A few scenes between the parents are imagined.

But it's all true. I'd cut and paste it if I could. What happened to Danny is exactly what happened to me during my first two full days in the hospital.

Numbers 26-29 are back to fiction again. The story doesn't have a happy ending. But then again, those are the kinds of stories you're supposed to write when you're twenty-two. You get to wait until you're thirty-four, thirty-five before crafting those kinds of endings.

Reasons Why

  1. My son was in the hospital. I drove him. He sat in the passenger seat and slept. His head rested against my shoulder. Traffic was light, and I was able to make it across the bridge without much difficulty.
  2. I parked the car in the underground lot and nudged Danny. He yawned. I hoisted him onto my shoulders because he was still very tired and didn't want to walk. When I had called our pediatrician and explained Danny's symptoms, he had seemed concerned. "Bring him in as soon as you can," he had said. "I would like to do a blood test."
  3. Danny was eight years old. He had thin brown hair, from his mother, and hazel eyes. He was small and skinny. When he played football with the other boys in the neigborhood, they would tackle him mercilessly. They thought that he was an easy target because of his size. He always jumped up immediately, sometimes smiling.
  4. My son was in the hospital. I have said that already.
  5. They drew the blood from Danny's right arm. It was a man that put the needle in. He sterilized the arm with an alcohol swab, then said little sting here. He took four vials. One of them was tinted blue and the man shook it as if he was mixing a drink. Can't let this one clot, he explained. All of the vials were labelled STAT.
  6. Our pediatrician, who we have always called Dr. John, told Danny to take off his shirt and pants. He had Danny lay down on the examining table. Dr. John felt Danny's ankles. Tiny red dots were spattered along Danny's feet and lower shins.

    "See, there," I said. "Those spots. "

    "Yes," Dr. John said. "And these bruises?" he asked, pointing to the blue and black areas on Danny's legs.

    I said that I didn't know. Football, maybe. He asked Danny to roll over. There were more bruises on his back. I hadn't noticed them before.

    Dr. John told Danny to sit up. He put a stethoscope on Danny's back and asked him to breathe deeply. Again, he said. And again, moving the stethoscope around a bit. He looked in Danny's mouth.

    "There," I said. "The sores."

    "Yes," Dr. John said. "Yes, I see." He touched the sores with a cotton swab. "Does this hurt?" he asked. Danny shook his head.

    When Dr. John removed the cotton swab, I saw that it was pink.

    "You can put your clothes back on, Danny," he said. He sat back in his chair. He flipped through some papers that were on his clipboard. He looked through them several times, occasionally writing notes. He put the clipboard down and sighed.

    "Andrew," he said, "Danny. There's no easy way to put this. No gentle way for me to say what I need to say."

    He picked up the clipboard again. He turned to the back sheet.

    "Danny," he said, "your blood counts are very low. Tremendously low. There's a part of your blood that makes things clot. These are called platelets. Your platelet count should be a number between two and three hundred. It's just a number, really. It just gives us a point of reference."

    He circled something on his clipboard.

    "Your platelets, Danny, are at forty. That's why you have all the bruises, and the sores, and those blood spots on your shins."

    My heart was pounding. I wiped my hands on my jeans. Danny was paying close attention to what Dr. John was saying.

    "Your white blood cells," Dr. John said, "are also very low. That's why you've been so tired. That's why you've had this fever. "

    "What does all of this mean?" I asked. I had an idea. I thought I knew what it might be, but I didn't want to know.

    "We're not positive. We're going to want to run some more tests. But I can say this with 99% certainty: Danny has leukemia."

  7. Sue came to the hospital that night. I called her from the phone in Dr. John's office. I told her that we were not positive. I told her that Danny had a room on the sixth floor. She started to cry. I told her that it was okay. She had to drive at rush hour. The bridge can be very difficult at rush hour. I tried to imagine her driving across the bridge with tears welling in her eyes.
  8. Danny's room was on the east side of the hospital. He could see the mountains from his bed. The sixth floor was the cancer ward. A tall woman entered the room at three forty-five. Danny was sleeping. She said that she was Dr. Gray, Danny's new doctor. She shook my hand.

    "A fine looking boy you've got there," she said.

    I nodded.

    Dr. Gray said that she wanted to perform an aspirate on Danny. Take a sample of his bone marrow.

    "It's a simple procedure," she said.

    I nodded again. As if she needed my permission.

  9. Danny broke his wrist two years ago. He was skateboarding down a hill. He had borrowed a friend's skateboard. He wanted to go very fast. Near the bottom of the hill, he lost his balance and landed on the sidewalk. His right arm slapped the pavement, breaking his wrist in two places. The friend suggested that Danny hit his arm against a wall to put the bones back in place. Danny wouldn't try it.

    Until now, the broken wrist was the only time Danny had ever been in the hospital.

  10. My son was in the hospital. He had leukemia. His name was Danny. Danny was a small boy, eight years old, with hair the color and texture of his mother's, and eyes that were sometimes green, sometimes brown.
  11. When Sue and I were first married, I already knew what I wanted our house to be like. It would be white or beige. There would be a front lawn, maybe with a tree in one corner. There would be a garden in the back. I would mow the lawn on Sundays. In the summer I would go shirtless. We would live a simple, pleasant life.
  12. Sue came into the room. She knocked timidly on the door, not certain that she had found the right room. This was the cancer ward, after all, and not a place for our son. She went to Danny's bed. He was sleeping. She kissed his face several times. She wiped his brow. She looked at the I.V. running into his arm, a bag of glucose, two small bags of antibiotics, and asked me if all of this was necessary.

    I explained that it was, that his fever had already started to come down. I told her that Dr. Gray would be with us shortly, to explain a few things.

    "The results of the aspirate will be back soon," I said.

    "Dr. Gray?" she asked. "Where's Dr. John?"

    I told her that Dr. Gray was the doctor now. She was a cancer specialist.

    Sue had a kind of spasm in her stomach when I said the word cancer. She put her right hand on her abdomen. Her legs looked wobbly so I led her to the chair. She put her free arm around me and held onto my shoulder.

    "My God, Andrew," she said. "Why is this happening?"

  13. It was nine o'clock when Dr. Gray came back. Danny was sitting up and we were watching some movie. Danny was laughing. The antibiotics had reduced his fever significantly. He hadn't felt this good in weeks.

    Dr. Gray sat on the end of Danny's bed. She asked him how he was feeling.

    "Good," Danny said. "Kinda tired, but good."

    Dr. Gray looked around the room. Sue was gripping my hand. Dr. Gray smiled weakly at us. She turned back to Danny.

    "The aspirate," she said, "confirmed what we had suspected. You have what we call acute myelogenous leukemia. It is a very rare and speedy cancer. It is especially strange to see it in someone your age. And when I say speedy, all I mean is that it probably hasn't been in your body for more than a couple of weeks. Okay?"

    Danny was quiet. He raised his eyes to the ceiling as if he was pondering some difficult math problem. "Is it bad?" He asked.

    Dr. Gray nodded. "Pretty bad."

    "Umm," Danny said. It was a difficult problem indeed. "How do I get better?" He asked.

    "Well, that's the thing. We'd like to start you on chemotherapy in the morning. What that means, basically, is that we put chemicals into your body and they kill the cancer cells." She gestured to the I.V. tubes that were snaking into Danny's arm. "We put the chemicals into your body through tubes like that. The chemo is very potent, though, so we can't run it through your arm. It would tear up your veins. What we need to do is put a catheter into your chest. A catheter is just a tube that goes in your body. There's a major artery under your collarbone, there, where we like to send the chemo." She touched a spot to the right of Danny's neck.

    "Okay," Danny said. "Does it hurt?"

    "No," Dr. Gray said. "They use a local anesthesia, so you won't feel a thing." She looked at us again. "It's called a Hickman Catheter. Dr. Hickman works here, the man who invented it. He'll be the one that puts it into Danny, so you know he's in good hands. If you'd like to come on down now, we've got the operating room ready for Danny."

    I said that we'd like that very much. Sue and I stood up. Danny started to get out of bed.

    "No, no," Dr. Gray said. "You stay there. We'll get a gurney for you to go down on."

  14. Outside of the room, Dr. Gray assured us that everything was going to be fine. She spoke in whispers. She put her hands into the pockets of her lab coat. She looked us in the eyes as she spoke, first looking at Sue, then at me.

    "Danny is in bad shape, but he looks like a strong boy. The chemo will be difficult. I will tell you that now. The chemo will be difficult. But he looks like the kind of boy that can pull through it. He looks like a very strong boy."

    "He is," I said. "Damn right that he is."

  15. Danny skinned his knees last summer. We were visiting Sue's brother Erik at the lake. He was going to take the boys water-skiing, Danny and his two cousins. They raced from the house to the dock. Danny was losing. He took a short cut through the woods and tripped over an exposed root. He fell over the edge of a small hill. There was gravel where he landed. The skin came off both of his knees as he slid to a stop.

    He squirmed as Sue and Erik picked bits of gravel out of his knees. They used sterilized tweezers. He wanted to scream when they poured peroxide over the wounds, but we had him bite down on a towel instead. His face was bright red. His eyes were puffy. He sniffled a bit when they were done.

    "So," he said, wiping his nose, "did I win the race?"

    We all laughed.

  16. When Danny returned to his room he had a Y-shaped tube sprouting from the lower part of his chest. A square piece of gauze covered its entry point. The gauze was taped on all four sides. Another smaller bandage rested just below his collarbone. His chest was swelling a bit. It looked like a bruise was forming.

    His nurse told us not to worry about that. It was probably some minor internal bleeding, where the tube had passed through tissue.

    "Let's keep an eye on it just to be safe," she said. She took a marker and traced the outline of the bruise. She examined the dressing. It was bloody. She put a fresh gauze over the wound. "We'll just keep an eye on this, she said."

  17. Danny continued to bleed throughout the night. Sue and I slept only a little. A new nurse told us that there wasn't much more for us to do. She suggested that we go home and get some rest. The bleeding worried us. We couldn't leave.

    By two in the morning, the bruising had spread across his chest. We could see the blood building up underneath his right arm. The nurse checked his dressing again. It was bloody again.

    "Hmm," she said. She changed the gauze. She left and returned with a ten pound bag of sand. "This might be uncomfortable," she said, "but you need to keep pressure on the site."

    Danny said that it was fine.

  18. It's not much to ask for, I don't think. A small house with a green lawn. I did yard work on the weekends. The edges of my lawn were trimmed. That's more than most people can say. I edged them regularly. Sue took care of the back yard. She had a beautiful flower garden. Sometimes Danny would toss his football into the flowers and Sue would yell at him.

    Sue weeded her garden. She kept the weeds out of it. Some weekends I would edge the front lawn and she would weed her flower garden. Danny would sometimes throw his football into the flowers. There would be yelling.

    I had wanted this when Sue and I were married. I had wanted the whole story: family, house, yard work. I'd wanted a wife and a child. A house in a clean neighborhood. The house would be white or maybe beige. I wanted to be able to put my arm around my son when he was ten years old and say son, meet Mr. Lawnmower. Then I could sit on the porch and sip at a tall glass of lemonade while my son trimmed and edged the lawn.

    I am not asking for much, am I, when I want my son to live to be double digits?

  19. Dr. Gray came in the room at seven o'clock the next morning. There were six other doctors with her. She explained that this was the team of doctors that would be working with Danny. They formed a semi-ircle around the foot of Danny's bed.

    Dr. Gray sat next to Danny and touched at the bruises. She looked underneath the dressing. Bloody still.

    "You're bleeding a lot on us here," Danny.

    "Yeah," Danny said. "Kinda cool, huh? Look." Danny pushed at the loose flesh under his arm. "Look how big my arms are now."

    "Yes, yes. This weight?" she asked. "You've been keeping this on your chest?"

    "Yep."

    "Any discomfort?"

    "A little, but not too bad. It's just kinda heavy."

    "Yes," Dr. Gray said. She handed the sandbag back to Danny. "Keep this on your chest, now. I know it hurts, but it's important."

    Danny nodded. The doctors filed out of the room. Sue and I followed them. There was a small table outside Danny's room. Danny's chart was on the table. A few of the doctors peered at the chart, whispering to one another. Dr. Gray wrote something down.

    "It's getting a little tricky," she said to us. She looked us in the eyes. She was absently clicking and unclicking her pen.

    "There's quite a lot of internal bleeding. His blood simply is not clotting. He hasn't bled anywhere important -- into any major organs, that is. That's the big worry right now. We don't want him bleeding somewhere major. The bleeding now, well, you can see for yourselves: it's all going down his sides. What we need to do is get him some platelets. We would like for his blood to start clotting. That's the immediate concern."

    Sue had dark circles under her eyes. We both did. She was trembling a bit.

    "These things you're telling us," she said, "Danny knows about them?" Her voice was calm and strong. "You have told him what you've told us?"

    "Not yet," Dr. Gray said. "But of course we will. He will be kept well informed."

    "That's good," Sue said. She lowered her head. Her voice wavered you make him better, she said softly. "You make him better."

    Dr. Gray smiled. "After the platelets, it should be fairly smooth sailing. I'm going to call for those now. The two of you," she said, "might want to go home. Get some rest. You'll be much more help to Danny if you're rested. We'll take care of things at this end. Come back tonight. Come back sometime this evening. We'll call if anything happens."

  20. I drove home. Sue followed in her car. Traffic was light. There was a slow moving van in front of me, but I didn't have the energy to pass it.
  21. Sue and I collapsed on the bed. We lay on our backs. I closed my eyes. The house was quiet.

    "Chicken pox," Sue said, suddenly.

    "What?" I asked.

    "What bothers me is that Danny went to that Jake Simms's house that one day in march. Remember? That Simms boy had the chicken pox and I expressly told Danny not to go over there."

    "Yes," I said, holding her hand.

    "I told him not to go over there and he went ahead and did it anyway."

    "But nothing happened," I said. "He didn't get the chicken pox."

    "That's exactly what I'm talking about. That's exactly the point. Where is it fair that Danny gets cancer before he gets chicken pox? That's what I'd like to know."

  22. We returned to the hospital after dinner. Danny had several new bags dripping into his Hickman catheter. There was a large bag of yellowish liquid. Danny said that this was his chemo. There was also a smaller bag, nearly empty, of what looked like blood. Danny said that those were platelets. He was sitting up in his bed. He was energetic.

    "Look," he said, standing up. His shirt was off and his sides were now a dark purple, almost black. He held his arms up so that we could see better. "Would you look at this? Incredible." He sat back on the bed. There was a remote control on his nightstand. "And this," he said. "My own T.V. They even get HBO. Isn't that cool? Mom? Dad? It's pretty cool, huh?"

    Sue pulled her chair next to the bed. She took his hand. "You are beautiful," she said.

    "Mom", Danny said. "Sheesh."

    "I mean it," Sue said. She kissed his hand. "You are a wonderful, beautiful son."

    "Da-ad! Tell her to stop."

    "Out of my jurisdiction," I said. "You're on your own."

    "Would the two of youstop it?" Sue asked. "Andrew, why don't you get us some coffee for us or something? Get Danny some ice cream from the cafeteria."

    Danny perked up.

    "Yeah. Good idea, Mom. Ice cream is good."

    I sighed. Sue wanted some time alone with Danny. That was fine. It would give me a chance to talk with Dr. Gray.

    Okay, I said. Back in a bit.

  23. I found Dr. Gray behind the nurse's station. She was on the phone. She wound her finger around the phone cord. When she noticed me, she raised her other hand as if to say wait just a minute, please.

    It was only thirty seconds when she put down the phone.

    She shook my hand. "You look much better," she said. "You look rested."

    "Yes," I said. "Sue and I managed a few hours of sleep this afternoon. Ate a solid dinner. It helped."

    "Wonderful. One member of your family is already sick. We don't need two more."

    "So," I said. "What about the bleeding?"

    "Ah. It looks much better. We gave him two bags of platelets this afternoon. They should stop the bleeding. Of course, the bruises will still be there for some time, but at least they shouldn't get any worse."

    "Excellent."

    "Just so you know," she said, "we're not in the clear yet. We're in for a long haul, here. I want you to understand that. This is only the beginning."

    I thanked her for her concern. I asked if she could stop by the room. "Sue needs to hear it, too," I said. I think we'll all need to hear it several more times.

  24. Danny's dressing still needed to be changed quite often. In a period of about five hours, his nurse had to change the gauze twice.

    "When this bleeding slows down," she said, "we'll only be doing this once a day, just to keep it clean. Then you won't have to see me as much."

    Danny smiled. "It's not so bad," he said.

    She handed the bag of sand to Danny. "Don't forget," she said.

    "I know, I know. On the chest."

  25. When my son was in the hospital, I slept in a soft chair. I slid down in it. My feet were propped up on a footstool. Sue slept in a chair next to me. Hers was more like a lounge chair, and she had a pillow.
  26. When we woke up, Danny was still sleeping. The sand bag that he was to keep on his chest had slid off onto the bed. I stood up and stretched. Sue's watch beeped. It was five-thirty. The coffee shop opened at five forty-five. I told Sue that I was going to stretch my legs a bit, buy a paper, get us some coffee. She yawned agreement.

    I looked over Danny's bed before I left. He was lying on his side. His blanket was pulled up to his chin. I wasn't able to understand how he could sleep so peacefully.

    I reached out to my son and touched his shoulder. He rolled onto his back like so much dead weight. I touched him again. He was still.

    I ran out of the room, screaming.

  27. Dr. Gray said that it was a fluke. Maybe he bumped his head on the back of the bed, or maybe all he did was sneeze sometime during the night. His blood still wasn't clotting, she said, not clotting at all. All it would have taken was a sneeze and he would have started bleeding in his head. The brain is surrounded by fluid, and he just kept bleeding into it, Dr. Gray said, shaking her head.

    It happens sometimes, she said. It just happens.

  28. My son was in the hospital. We left him there. Sue and I drove back across the bridge alone. The mountains were covered by a low fog. I don't remember seeing any other cars on the road, but I am sure that they were there.
  29. Sue and I had wanted a simple life. A house, white or beige. A front yard with neat edges and maybe a small tree. A son that we could name after my father. These are the things that we had wanted.

    We have moved into a condominium, now. When we bought the house, we'd had a plan. The smallish room at the end of the hall would be for our son. We would put his name on the door. The room became empty, and we didn't know what we should do with it.

    So now we have a nice condominium on the lake. There is ample space for the two of us. Sue keeps a few potted flowers on our deck, but it is nothing like the garden she used to have. There is a man that cuts the grass for all the owners. He has a strong back. He takes off his shirt in the summer. I sit on the deck and watch him. He cuts neat diagonal stripes in the lawn. Occasionally, he stops and waves. I am certain that he has a son: only such a man can understand the importance of a well kept yard.

A What?

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Day blends into night. The lights dim in my room, but they don't go out all the way. There is still too much activity. Too many vital signs that need to be monitored every hour or two.

If I'm not already awake, then there is a gentle hand on my shoulder. I struggle to sit up. Propped on one elbow, perhaps. Two fingers at my wrist at my wrist for six seconds. Then there is a thermometer. Then a snug wrap around the upper half of my arm. It gradually tightens, and then there is a cool stethescope at the base of my elbow. Blood beats against the pressure. The wrap loosens, is stowed in a metal and plastic fixture attached to the wall behind me.

"Shh," my nurse says. "It's okay to lean back now, if you want."

The blood draw comes next. Four or five small glass vials are lined up neatly on a metal tray. They rest on top of a clean white towel. Each vial has a different colored cap.

"Lots of blood?" I ask.

"Lots of tests," my nurse says. She finds a vein. It's easy. I've got good veins. She doesn't need to look to long before finding a good spot on my left arm. The vials are vacuum sealed. This means that instead of four or five separate needles, it will only take a single poke to fill all the vials. There's a kind of open-ended attachment at the opposite end of the needle. The sharp end goes in. As soon as one of the vials snaps into place, upside down, the seal on the cap is broken and a tiny jet of blood spurts against the glass inside.

"Cool," I say. They didn't have this in England.

My nurse nods. "Yes," she says, a little distracted. She holds the needle in my arm with one hand, and swaps out vials with the other. When the last vial is returned to the tray, she takes the needle out, wipes my skin again, then tapes over it with a clean gauze.

"We won't be doing this too much longer, though," she says.

"What do you mean? No more tests?"

"No, it's not that. We just don't want to stick you any more than we have to."

"Oh. Well, it's not too bad."

"Well," she says, "it'll get better. Tomorrow we'll be setting you up with a Hickman catheter. No more needles."

"A what?"

"A Hickman catheter," she says. "A way for us to do blood draws, but also to get medicine into your system. Think of it as a kind of a permanent needle. Your doctor will explain it all to you in the morning. Try to get some rest, now."

You're Very Lucky, Actually

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"The chemotherapy will be very strong," Dr. Collins tells me the next morning. Dad and Jane are here, too, drinking good cups of coffee in the seats by the window. It is Sunday. There is a mute morning light. This time yesterday I was still in Lancaster.

Dr. Collins has been explaining about the catheter that will be inserted into my body later in the day.

Allow me to be clear about one point now, because it almost certainly was not Dr. Collins who stood in my room on the morning of March 4th, 1990. She would come later. Her rotation as resident on 6 South East wouldn't start for another week or two, and would continue for what, maybe a month? Six weeks? Through the entire course of my several stays on the sixth floor, there would be half a dozen resident physicians. But she would become my primary physician; she would write the reference letter, later, to the Mayo Clinic when I finally made it back to Carleton in January of 1991.

For the sake of narrative clarity, I will only have one doctor throughout the majority of this story. We'll make an exception in July and August, when I'd like to think my family and I helped to improve the bedside manner of the young resident who was looking after me during that whole deal with the fevers and the eye infection and the several abscesses that had formed on my brain. But everything else will be the wise, calming, excellent Dr. Carolyn Collins.

"The chemotherapy will be strong," she says. "We'll assume it's chemotherapy for now, pending the results of another bone marrow aspirate tomorrow. Regardless, you'll be needing a Hickman catheter."

I'm barely half awake. Basic physics again. A body in motion continues, except that I've stopped moving now, and as much as I might want to put a brave face on it, leukemia really does wipe you out. Jet lagging, the emotional high of being home again, next to no healthy white blood cells remaining, a restless night in a strange bed with nurses waking me up every few hours; I'm spent. I know that this is important, that I should be awake enough to be able to ask questions about all the things that will be happening to my body. I will need to be my own best advocate. But it's a struggle just to keep my eyes open while Dr. Collins is talking to me.

"What is it?" I ask.

Or somebody else asks. Probably somebody else asks this question, one of my parents. I'm happy to just nod politely, agreeing with whatever Dr. Collins says.

"What's a Hickman anyway?" Jane asks.

"Pretty simple, really. Well, a little complex. But simple enough to understand: the chemotherapy will be strong. It would tear apart your veins if we ran it through your arm. To say nothing of the other supporting meds we might need to give you. So the Hickman catheter will act as an alternate line for us.

"You're very lucky, actually. Dr. Hickman works at the hospital here. He'll be putting yours in. It's a point of professional pride for him to put them in for anybody who needs them here. You'll be in very good hands."

"Sounds good," I say.

Dr. Collins stands next to my bed. She touches a spot on the right-hand side of my chest.

"The catheter itself is essentially a thin plastic tube that will go into your chest here. You won't need anything more than a local anesthetic. Dr. Hickman will make one small incision here, and another, here." She traces a line almost up to my collar bone. "He'll guide one end of the catheter into your subclavian artery. Big vein. A good, big vein for the chemo to enter your system. Other medication, too. We'll also start to do blood draws from one of the ports."

"Sounds good."

Of course, everything sounds good at this point. I don't know anything about anything, and I have placed immediate, absolute trust in the people caring for me. My doctors could recommend running naked through the hallways, waving pom-poms, shouting out, leukemia, out, geee-tttt OUT! and I would cheerfully agree, only asking if I needed to find the pom-poms on my own -- and what color? -- or if the hospital would provide them for me.

Dr. Hickman, I Presume?

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Dr. Hickman is a kind-looking man, whitish hair, glasses, older than my dad, definitely, but hard to tell by how much. He smiles when we arrive. Dad brought me down in a wheelchair, guided by one of the nurses from my floor. Dr. Hickman smiles and reaches out to shake Dad's hand, but pauses with me. A strong hand on my shoulder, instead. Even though he'll be putting in my catheter (his catheter?), he hasn't scrubbed yet, and he's cognizant of my condition. The rules are clear: nobody touches my skin unless they've washed their hands first. No exceptions.

"Pleased to meet you, Robert," he says. "That's my name, too. Great name."

He nods toward my father.

"It's good of your brother to come down, too."

We laugh together. It'll be cool. Nothing to worry about. Dr. Hickman is busy talking and cleaning, going through the specifics of the procedure for us. Nurses set equipment out onto tables set on wheels. Dad helps me onto a long table. My shirt comes off. Somebody points out the catheter itself. Looks simple enough: just a long, thin, white plastic tube that ends in a Y. Some kind of plastic clamps or something -- one red, one white -- on each end of the Y.

Gloves snap into place, and surgical masks, and a bright light shines overhead. We're quickly into this thing. Dad's still here, which is good, and although it seemed like a flurry of activity with nurses in and out of the room, maybe it was just the one nurse all along. My chest is wiped down with a cold swab. It is smeared orange. Several white towels are draped over my chest, horizontal, vertical, horizontal. I try to sit up, but Dr. Hickman is calm, soothing, lay down, son.

Like other doctors before and after him, he says "little stick here" before injecting a dose of anesthetic. Maybe a couple of little sticks. Like bee stings.Then "tell me about England," or "crazy weather lately," or "so what kinds of things do you and your brother do for fun," or any number of distracting conversations until the anesthesia sets in and the prep work has been finished and there's no turning back.

It's a simple procedure. Dr. Hickman could probably do these in his sleep. And everybody is right when they say I won't feel a thing, don't even know when he's cut into my chest except that the blood spilling out tickles a bit.

Holy crap!

Nobody mentioned the pressure. Or maybe they did but I just ignored the whole thing. Maybe I heard the simple part: two incisions, insert catheter here, done.

Holy effing crap!

Of course the catheter doesn't get from the middle of my chest up to my collarbone by itself. There's flesh there, and tissue. It feels like Dr. Hickman is fricking kneeling on my chest, both hands and a knee and a small truck, pushing that six foot wide galvanized steel pipe up through my torso.

I'm gasping for air. Am I gasping for air? I must be. There's a large circus elephant standing on my chest. Two. Five. How could it not be hard to breath?

"You're doing great, Robert, just ... a little ... more. There. All done."

He smiles, unsnaps his gloves, removes his mask, smiles again, this time so I can see it. He explains that it will probably be sore for at least a couple of days, what with the pressure and all, and maybe some bruising, something to keep an eye on.

"Thanks," I say. "That wasn't so bad."

Protocol

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There's not enough time for all of the tests that my team of physicians would like to run. The plan was to do another bone marrow aspirate early Monday morning. We all know what I've got. The results of various tests in the UK were pretty clear. But there's something about protocol, and running a different battery of tests that perhaps the hospital couldn't run in Lancaster. Honing in on the specifics.

My bleeding has changed all of that.

The Hickman, obviously, is critical to my ongoing care at the hospital. It's something that I've got to have if I'm ever going to be able to take the chemo, or maybe a bone marrow transplant in the future. We're not looking that far ahead yet, though. I can't even roll over in my sleep because I need to keep a ten-pound weight on my chest. The bruises grow hourly.

Another aspirate? After what we went through in England? After all the internal bleeding that's taking place now? Nope. Not gonna happen. No more punctures, no more opportunities for bleeding.

Dr. Collins uses one of the chairs by the window. She pulls it into the middle of the room. We'll say that the entire family is here. Mid-morning, Monday the fifth day of March, 2003. Mom's taken the week off from work so she can spend the majority of the day at my bedside, holding my hand, opening cards and letters, reminding everybody that the need to wash their hands, first thing, before the come anywhere near me. Dad and Jane usually come in the evening -- an unspoken but noticeable arrangement that allows both sets of divorced parents to have hours of time with me, without necessarily needing to share my room with one another -- but this first morning, when Dr. Collins spells out my protocol, everybody is there.

There's a lot of research, she tells us. A lot of debate. For me, for now, we're going to follow a standard regimen of chemotherapy. After that -- after this induction round gets me to the much desired remission -- we'll have had the opportunity to run more tests, to do the requisite detail honing. There will most certainly be follow up treatment, she assures us. Until we know more, however, it's impossible to say whether or not that follow-up will be additional chemotherapy (probably) or a bone marrow transplant (depends on a number of factors, not the least of which is whether or not my sister is a perfect match).

Standard protocol, then, is one week of chemotherapy. That's one of the main reasons for the Hickman. A large bag of potent chemicals will be placed on a rolling cart. The top of the cart has lots of hooks. The heavy colored bag -- red, I think, or maybe yellow -- will be placed on one of the hooks. A line runs into one of the Hickman ports, and the bag drips until it's empty. Slowly. Takes a day, maybe, to empty the bag. Once empty, it will be replaced by another bag -- this chemical, she explains, is called daunorubicin, standard, very, very normal and standard. Repeat for seven days.

At day five, though, another bag, smaller, will be added to the top of the cart. There are plenty of hooks. It'll feed into the Hickman catheter, into my subclavian artery, disseminate through my body however chemicals do that sort of thing. This is Ara-C. A tad stronger than the other stuff, hence the shorter duration. The bag is smaller and also slowly drips. Drips slowly. You can watch the drops forming before they shoot down the clear plastic tube.

Double up on the chemo for the last three days, providing a strong finish. Goodbye crapped up leukemic-blast producing bone marrow, hello (eventually) healthy, productive marrow.

This is the protocol, Dr. Collins explains. Seven and three.

We'll take a break, then, she explains, let you recover. Standard operating procedures. Even after we stop, the chemo will continue to work. We'll do another aspirate then, in about two weeks, one week after we've stopped, to confirm that you've made it into remission. We don't really talk about what happens if I don't go into remission. Bridges later versus bridges now.

Why I Couldn't Stop Bleeding

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Platelets help your blood to clot. They thicken it, I suppose, like corn syrup or something. If you're in a hospital, and they're looking for this sort of thing, you can find out exactly how many platelets a person has coursing around their bloodstream. One of many components of healthy blood that are, apparently, easy enough to count with the right tests.

Mine were low. Silly low. Slap on the forehead "duh" kind of low when you look at how quickly and profusely I would bleed when given the chance. We'll pick a number to pin on the wall. Let's say 400,000. That's the number -- the count -- you might expect to find in your average Joe Healthy Guy. It's okay to be a little lower. Three hundred thousand is fine. Two hundred thousand is, too, even down to, say 150,000 or so. Anything lower than that should be cause for concern. But there's a healthy range: 150,000 to 400,000.

Even after several blood transfusions on my way down from Lancaster, and then again on my way over from London, I arrived at the University of Washington with a platelet count of 30,000.

Hence the almost immediate arrival of a steady stream of small blackish-purple bags that would take their place with many others on the top of my rolling metal cart. That cart and I were inseparable during my hospital stays. We went everywhere together. We called it my "little buddy," always holding up bags of blood and chemo and platelets, rolling with me, hanging out, making sure everything dripped down just like it was supposed to.

Platelets kept coming and I kept bleeding. I would have bled more without them, I'm sure, but even still, they were only so effective. I needed my platelets back.

Laura started to donate her platelets. She'd describe the experience, watching her blood "spinning" through a couple of different tubes, extracting only the precious platelets, returning the rest. I'd always get the biggest boost from her platelets. Big sister taking care of me again. Family blood, better than the rest.

It's A Balance

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"What's that?" I ask.

Cindy is inserting a needle into one of my free Hickman ports. There is a clear liquid. She pushes it in slowly.

"Heparin," she says. "Kind of a blood thinner. It'll help make sure that your blood doesn't clot."

"I thought my blood was already too thin. Isn't that what the platelets are supposed to be doing? Making my blood thicker again?"

"Yes, but there's a balance. We don't want you to bleed so much, which is where the platelets come in, but blood clots are bad, too."

"So because of the Hickman, I'm bleeding a lot more than I'm supposed to. All the extra platelets will help stop the bleeding. But they might give me blood clots, too? So we put in something to make sure that doesn't happen?"

Yes," she says. The plunger is empty.

"But I'll still need more platelets if I keep bleeding? And more Heparin, too? Then maybe more platelets again?"

"Exactly," she says. "It's a balance."

Seven Days

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Your first week on chemo is a few different things at the same time. On the one hand, there's little to no pain. The chemicals don't burn. You can't feel them ripping apart your veins or anything. They're just these diligent workers, tiny, unseen, coursing through your body, on these myriad important search and destroy missions.

You're not required to do anything. You are being waited on hand and foot, it seems, meals brought to you on trays, placed quietly on the far table if you're sleeping, rolled right up over the adjustable bed if you're awake. You've got the TV set. You managed to convince your parents to bring your Nintendo into the hospital room because when you're not being waited on hand and foot, or watching television, or watching clouds raining outside your window, you'd like something else to pass the time.

This is one of the other things. Since you're not actually doing anything -- getting all these tests done for you, people smiling and helpful, hand on the small of your back, helping you onto the scale, or the gurney, or the wheelchair, helping you to the bathroom, to the shower, down the hall (if you have enough strength), all these helping hands helping everywhere -- much of the time you spend alone and awake is an exercise in extreme boredom.

You absolutely positively do not want to let your imagination wander. You can imagine all sorts of things. When it's two in the morning and you're now wide awake because your body clock is all kinds of backward -- light in the darkness, darkness when you're expecting light -- and there's nothing on TV, and the visitors are long gone, you are more than capable of imagining the worst of the worst.

So you just don't. Focus on school in the fall. Focus on getting through the next day, on whatever it will bring.

Which is another thing: you are so unbelievably lucky.

You're getting your chemotherapy in probably one of the handful of best hospitals for this sort of thing in the entire country, and it just happens to be where you grew up. Word spreads. People know. Close family friends are the first to visit. They smile and wash their hands at your sink before approaching carefully, hugs and handshakes. We're well past commenting on how much bigger/older/mature you look since the last time we saw you. We're not always happy on these visits, but different people will look at you with different eyes.

Your close friends also visit, almost immediately, and everybody does an excellent job of pretending like there's nothing to worry about. Circles of friends. It expands. People you maybe haven't kept in touch with over the years will find out. They, too, will be worried, and will want to visit. You will need to catch up on the good old times. Carefully, and with increasing skill, you will dance around the difficult questions.

Nothing to worry about. Nothing to see here. Move along.

At the end of a week you will be surprised that your time is both empty and filled. Everything, it seems -- chemo, vomiting, fevers, visitors, helping hands -- is at once bad and good, energizing and exhausting.

These Things Are Expected

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I'm still feeling pretty good. Relative term, of course, but I figure things could be a lot worse. My counts aren't coming back anytime soon, which is to be expected, but antibiotics and platelets can work wonders.

Most mornings I'll shuffle over to my bathroom. An old family friend asked me what I'd really wanted while I was in the hospital; I figured since I'd be spending the vast majority of my time in bed, and I usually just slept in shorts and a tee-shirt, that some nice pajamas would be good. She bought three or four pairs of these really comfortable cotton pajamas. Pants and a button-up top. Classic. White, with thin blue stripes. I'll shuffle out of bed most mornings with my comfortable pajamas and my bare feet on the cool floor and I'll get my first puke of the day done and over with. I'm not eating much. Haven't been eating much. It's one of the gradual things that you don't notice when it's happening -- your appetite slowly vanishing, replaced with a constant uneasy emptiness and this taste like sucking on keys. It's no big deal, I figure, just part of the package.

Sometimes I'll exacerbate my first morning puke by drinking cold apple juice. We all know what it does to my stomach. The juice is cold and I slam it down. I know that I'll be puking in half an hour, if that. It doesn't matter: I'm not going to throw anything up anyway, so when my second puke comes a little while later, I'll just excuse myself and close the bathroom door. It's a routine. The chemo drips. It drips constantly. My appetite vanishes. These things are expected. The nausea is, of course, textbook. I'm hungry but I'm not and when I'm not I'll just throw up again anyway. It doesn't even occur to me that I've stopped eating completely. Those rare times that I am hungry, my throat rebels, a gag reflex with almost anything I try to swallow.

We have the requisite discussions with my nutritionist. A new bag, bright yellow, is introduced at the top of my little buddy. "Bacon and eggs" is the joke. All the nutrients that I'm unable to get down my throat will now slide in through my handy, multi-purpose Hickman. They won't make the nausea go away. No, no. The chemo is all about kicking my stomach around six ways from Sunday. Now that I'm not eating, though, this bag will ensure that I'm not skin and bones when I finally get out of the hospital.

I'm not trying to be glib about these things. When I say "it's no big deal," of course I don't mean that it's perfectly normal to wake up and vomit, then make your way to the bathroom every few hours to just kneel over the toilet again and again, dry heaving because you haven't been able to eat for days or weeks or whatever. Yes, that part of it absolutely sucks. But put it in context. I'm not at home, nor am I would one would necessarily consider in the best of health. Everybody and their brother knows that when you're getting chemotherapy there will be some nausea. It's not as if the vomiting is somehow unexpected or out of the ordinary.

We're trying to stay big picture here. I'm not really worried about all of these side effects. Some of them I don't even mind terribly much. Chemo makes me puke. It creates this kind of metallic taste in my mouth. So what? It also gets rid of the leukemia. Sounds like a fair trade to me.

30 Pounds in 30 Days

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One of many first things we do each morning is stand on a scale. Michele is about my age. She's studying at the U. Part of her internship (or maybe it's just a student work program) is to wheel a large scale up and down the halls. The scale has hand grips, waist high, almost like a treadmill. Michele wants to make sure that we're not losing too much weight. It's something that needs to be monitored for all the patients on the sixth floor. It's another number that must be written down, tracked, charted, looking for trends in the digits.

Sometimes I'm awake when she knocks on my door, sometimes not. She is very kind. She brings the scale close to my bed so I don't have to shuffle too far, especially if I haven't been able to wake up yet. The hand rests are padded, which is nice. I don't have to lift my feet or anything. Just shuffle bare feet, stand still for a few seconds, then watch the numbers climb.

165 is as good a starting point as any. When I'm bleeding from the Hickman, those first days, the numbers steadily tick upward. I extend my arms, pointing to the dark bruises underneath my right arm, like a dark, heavy sac. Every day the numbers creep up. They stop at 175.

The bleeding eventually slows. The bruises stop growing. Things settle down. Michele smiles. We hold fast for days before the chemo starts to kick in. With my appetite gone, the numbers drop steadily, a pound or so every day.

Back down to 165.

160.

155.

150.

There's really nothing I can do to stop the pounds from dropping, to stop the chart from trending down. I don't want to eat. Hell, I couldn't eat if I wanted to. But I would like to stay above 150. A magic number, I guess, simple and round. It'll take me about a month to lose the twenty-five pounds to get down that low.

And I can't do anything about the other five I'll lose in the final days before I leave. One forty-five.

Haircut

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I've got this seriously thick head of hair. It doesn't grow long so much as it just gets thicker, like a Chia Pet. I've tried growing it longer, trying for cool rock star hair, but it just ends up getting bushier and bushier. Drives me nuts. When I was a counselor at Orkila in 1985 or 1986, everybody in my unit decided that the way we were going to kick off the summer -- the way we were going to show the rest of the camp how tight our bond was -- would be to get our heads shaved. It was a guy thing. The four of us would look tough and cool and everything.

Thing is, I loved it. No muss, no fuss. Since then, I've kept it pretty much clipper cut short (at least on the back and sides), with a few variations here and there. Had long bangs once with the rest shaven. Did the flat top. Used to get free haircuts at beauty salons by letting new hairdressers practice with the clippers. Didn't matter to me. Just shave it all off. Easy to manage, easy to clean. A little gel for extra spikage and you're good to go.

Heading into chemo, we knew that I'd be losing my hair. It's a given. I'd been a bit lazy about getting my haircut while I was in England (plus maybe it was better to spend my money on beer and pool and fish and chips than on staying well groomed), and it was shaggier than normal. Never very long, but thick and over my ears and everything. So we had a family friend come in, Michael, who'd been cutting Dad & Jane's hair for years. Laura's too, recently. He brought scissors. He came to visit, to pay his regards, but also to trim my golden locks.

There was this off chance that I might not lose my hair. Really rare. Almost never happens, but some people react differently to the chemo. So why go bald if you don't need to? Instead of shaving everything off ahead of time, Michael and I decided to just trim it back nice and short. And even if the chemo did what it was supposed to do, at least I'd make less of a mess when the clumps of hair began to fall out.

Michael brought his scissors and a set of clippers and we chatted while he snipped and clipped. We'd moved a chair into my bathroom. We put a towel over my shoulders. My hair turns brown when it falls on the floor. Big bushy piles of brownish blonde hair. I'm not sure who swept everything up afterwards. The hair fell from my head and landed on the tiled floor and somebody came in later to take it all away.

Becoming Bald

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It wasn't for another week or two when the falling out of hair really began in earnest. I would wake up. I would lift my head from my pillow and clumps of hair would stay behind. Sometimes I might roll over in my sleep, hair in my mouth. I'd shampoo in the shower then wash my hands again to get all the hair out from between my fingers. I could shake my head over a trash can and watch the hair rain down.

A few days of this and I'd had enough. More than enough.

Cindy had a set of clippers, too. Or she had access to some that were shared by the entire sixth floor. We set it to low. The lowest setting. What is that? One? Zero? As close to the scalp as you can get, completely eradicating all of Michael's careful craftsmanship (except, of course, in the spots where there were, well, spots).

Gone. Done. Good riddance.

Introducing Cindy and Anne

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I don't know exactly where or when or how Cindy and Anne became so important. One can assume they were there from the beginning. If not the first day, then certainly one of the days immediately following. It's like that early part of the movie where characters are introduced -- parts being played by unknown faces -- except that you don't yet know who will become the leads and who will fade into the background. Only through repetition will I begin to recognize my primary nurses (only through their constant presence would I be writing this today).

Cindy will arrive in the morning to check my vitals. She will introduce herself. She will smile. Black hair, slight build, strong hands and wrists. She is quick, and professional, and courteous (and, yes, more than a little attractive). She will return a few hours later, more vitals, maybe a bag that needed to be replaced.

She is there almost every morning. She works through the morning and into the afternoon, checking on me every once in awhile.

Anne arrives in the evenings. So much like Cindy in so many ways, yet also so very, very Anne. Red hair, same smallish, slim build, but clearly athletic with those strong arms and wrists and hands (and, yes, also very attractive). More quick to tease me, to rib me, to gently needle me about things.

There's a shift change -- the baton would be passed -- and Anne would be the one checking vitals and replacing bags and helping with my meds.

This was the routine. Cindy during the day, Anne at night. And even though there would be a third or fourth nurse, working the overnight shift, our interaction would always be minimal. It was brief. I'm sleeping somewhat regular hours, now, and I trust that when I wake each morning, Cindy will be there.

(why is it so hard to write this, now, thirteen years later? why are my sentences so crisp, so detached? why have i suddenly lost the ability to hit the shift key on my keyboard?

i want to be able to show how much cindy and anne meant to me, through repetition, through this cinematic repetition of the same scene over and over again. it's me in bed, looking worse and worse with each passing day, losing hair, losing weight, and cindy comes in every morning and checks on me at first with professional courtesy and then later, the more times she comes in, the more times she smiles and laughs and we begin to talk and it's obviously still her job but it's also how friendships are formed because she's always there, this amazingly important constant, except that you can't know that in seven days.

you can't know that when you've been in the hospital for a month and nobody knows for sure that your blood counts are ever coming back, that maybe the chemo was too strong and no bone marrow donor out there, and what? what then? you can't know that when it's really nip and tuck and nothing is going according to plan that this steady constant presence in your life will accost one of your doctors in the hallway outside your room, that she will push him up against a wall, this slight nurse with the strong hands, and she will yell at him you make him better. she will tell you one afternoon, after the danger has passed, that if they'd let you die she would have quit her job. how can you know these things? how can you know how important you'll both become to one another?

you don't know about the fevers, either, the almost daily fevers that will come around the same time, or that you will have become so dependent on her daily presence, the habitual goodness of waking up to find cindy taking your pulse, that those days she took off (she can't work every day you selfish bastard) your fevers would spike higher and harder than any other day. she would come back from her day off and yell at you (gently, teasing) that you shouldn't have gone and done that. the fevers would still linger, but they were milder when cindy was working. we didn't question why.

all of these things.

i mean none of these things.

everything.

cindy was everything and anne was everything but they didn't start out that way. it was slow. it was a slow and steady progression, the way they worked themselves into my life, just like my drip drip dripping chemo. you don't notice it much at first, but the more of it that enters your system, the more you begin to understand that it's having an absolutely, unbelievably important impact. it seems like nothing, really, nothing at all.)

Cindy and Anne were important. As important as the chemo, probably, and the mountains outside the window, and the steady stream of friends and relatives who all lived nearby. Getting better is one part medicine, and nine parts everything else.

(and sooner or later, you -- you, robert k. brown -- will be forced to write about the hard parts in the first person instead of hiding behind the second or third. remember. this happened to you.

dammit.

did it again.

this happened to me.

something else to work on: the shaping of this narrative, the changing of is to was, of you to me.)

My Second Bone Marrow Aspirate

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We're fourteen days into it, now, not exactly two weeks from when we'd arrived at the hospital, sunny, smiling, ready to tackle the world, but two weeks, exactly, from the very first drips of daunorubicin. It's our third Monday, and I'm getting my first bone marrow aspirate since England.

First of all, the bleeding is no longer a concern. I'm still not producing any of my own platelets, but the almost daily infusion of other people's platelets (I'm down with OPP) has pretty much ensured that this aspirate won't leave me bleeding from my back like the last one.

Second, I'm lying on my stomach when the needle goes into the small of my back. There's the local anesthetic, of course, little bee sting here, there, so I don't actually feel the stick. Pressure's not so bad, either. Probably helps that I'm not on my side. My hips are actually up against something solid. Resistance is strong. The needle pushes through bone. Marrow is extracted.

This is the important test.

My first aspirate was meant to determine whether or not I had leukemia. But now that the chemo has stopped dripping for a week, and I'm not showing too many adverse side effects, we are ready for a different kind of test. We're not using the results of the aspirate to confirm what we already know.

This is the big one, the test to see if the chemotherapy actually did what it was supposed to do: chase the leukemia from my system.

You're Not In Remission

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My room has become very homey. Cards and letters are pinned to a one of two large corkboards opposite my bed, just below the TV. There's a Far Side calendar on the right-side corkboard. I've been using a big indelible ink marker to cross out the days. I haven't so much been drawing a big X across the blank days, as I've actually scribbled out the numbers themselves. It's as if the days are not only past, but that they never existed in the first place. You can't read the numbers unless you get up real close. You need to squint to decipher what's underneath the permanent ink.

There is a row of already opened bottles of pop on the small shelf that separates the two boards. Big bottles, two liters, all completely flat. My nutritionist had explained to the family that chemo would have an adverse affect on my appetite, and that drinking cold carbonated beverages might make the nausea worse. So Mom stopped by Safeway on her way to visit one afternoon, and had picked up several two-liter bottles of Dr. Pepper, Coke, Pepsi, Mountain Dew. A sample pack. I didn't know if I would even be able to taste the pop, so she picked up a variety. She lined them up on the shelf. She wanted them to be good and flat by the time I'd lost my appetite.

What I could taste of them tasted like crap. Flat lukewarm pop, whether you've been getting chemo or not, is something that just doesn't belong in anybody's system. The bottles stayed on the shelf, though, caps on, not getting any colder or more carbonated, on the off chance that I might suddenly like them in the weeks ahead.

There are no flowers. Too risky, what with the way my immune system is behaving.

The room is kind of a mess. Not dorm room messy, with books and pens and loose change all over every available space on my desk, posters on the wall, dirty laundry piling up in my wardrobe, but a kind of lived-in, I've been in a hospital room for three weeks kind of messy.

A few mylar baloons drift lazily near the ceiling. The more comfortable chairs remain lined up against the window. Mom has brought one of the folding chairs next to my bed. Close. She's being doing this for awhile now, staying close, holding my hand when I sleep. Sometimes we don't talk at all. Sometimes I'll do that thing I used to do when I was much younger, pretending to be asleep in the back seat of our old red Cutlass Supreme, my head nodding realistically with the motion of the road.

She cries a lot, sitting in that narrow folding chair, holding my hand. She will be sobbing and I won't know what to do or say. I will want to apologize, even though I know doing so will makes her sobs rack harder, feeling guilty that I'm feeling guilty. And so on. So I'll do that thing, that thing I did when I was a kid. I'll end up drifting off anyway. So exhausted. An easy step. Pretending, sleeping, what's the difference?

Dr. Collins has been talking for a little while. She has been explaining the results of my aspirate.

"We're looking for a number," she says. She is standing in the middle of my room. When she is on her rounds, she will be flanked by several other doctors, young, diligently writing notes with tiny, almost invisible pens on equally tiny, imperceptible scraps of paper. Today she is alone.

"We don't need to get into too much in the way of details here, Robert, unless you want to. The number itself doesn't really matter. It's a reflection of the percentage of leukemic blasts that still remain in your system, right? It's meant to provide us with a level of confidence that the leukemia has been eradicated. This is what we're looking for with this aspirate."

I'm not so perky anymore. My days are long and slow and draining. I can't think of anything funny to say. No snappy retorts that demonstrate how brave I'm being, or how I'm concerned but, you know, not too concerned. I'm tough. I'm tough as nails. Instead of the funny energetic guy who laughs in the face of danger, I have become the silent warrior nodding quietly to the good doctor.

"So."

"So."

"So this number that we've been looking for, well, we didn't find it. You still have too many blasts in your system. You still have leukemia. You're not in remission."

I Should Rage

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The deal is that Dr. Collins is only supposed to bring good news. That's the way it works. I do what all my doctors and nurses tell me to do -- do everything with a smile on my face if I have to, gritting my teeth if necessary, no complaints -- and the good news is supposed to flow like wine. We have certain expectations, understand, and they are not being met with this announcement.

There are, of course, explanations. It's not backpedaling. I know she's not backpedaling. And I know that what she's telling me are things that don't make sense to explain to me at the beginning. We're optimistic on Day One. We're so completely ready to beat this thing. Day one is not the time to hear Dr. Collins patiently explaining to her patient, hands open, palms up, apologetic, that on average, "it takes 1.3 weeks of chemotherapy to induce remission."

Induce is always the word we use when we talk about remission. Induction. Induction-duction, what's your function?

And because my protocol calls for 7 solid days of chemo, the statistic Dr. Collins shares with us really means that more patients make it to remission after only one round than don't. More get it right the first time, so it's not really backpedaling at all. The odds had been in my favor.

Shit.

I should yell. I should yell at the top of my stupid lungs that this is complete and utter bullshit. I should rage. What the hell kind of hospital is this? What the hell kind of protocol am I on that I'm not already cured after a week of chemo? A tantrum would be good. Knocking over hospital equipment. A big show. I can't rip the Hickman from my chest, but I could make sure I'm not hooked into anything when I stand up and shout I am SO out of here. I could slam the door and walk barefoot all the way down to the lobby where I could stew. I don't have a car, or money for a taxi, or anywhere to go, really, or anything, but I could march right down to that lobby and... and...

Shit.

I should be pissed, but I'm not. I'm not even sad. I remember writing ominious notes to myself, knowing full well that my words were a scary foreshadowing of something bad just over the horizon. I should have been walking up the Spine at Lancaster to visit a doctor. Instead, I sat on my ass for a week, too afraid to do anything except make excuses. This is my responsibility. If the leukemia has had an extra week to build up strength, and that extra strength means the first week of chemo didn't work, well, crap. It's on my shoulders. Yelling at Dr. Collins won't get me into remission any sooner.

"What does this mean?" I ask. "What's next?"

I think I already know. My sister had a blood test weeks ago. It's a specific test that measures six specific factors to determine whether or not her bone marrow and my bone marrow are identical. Siblings sometimes are. They're the best bet for a bone marrow transplant. Except -- much to Laura's chagrin, apologies after apologies -- she didn't match. We're still searching the registry for a any match, just in case. But for now, I'm pretty sure I know that we've only got one option with which to work.

"Same protocol as before," Dr. Collins says, "with one small difference: we're going to reverse the order. We want to hit the leukemia hard while it's on the run. We'll start both the Daunorubicin and Ara-C at the same time, the stronger combination at the beginning instead of the end. Three-and-seven this time, instead of seven-and-three. "

"One more week, then?"

"One more week."

Sigh.

"When do we start?"

"Now. Right now. Immediately."

Mom's hand is squeezing mine. Tight. I might be squeezing back just as hard. Can't be certain. I look to my right and all I can think to do is smile weakly at mom, kind of shrug my shoulders as if to say whaddya gonna do?, almost as if I'm asking for permission.

She pats my hand. Yes, yes.

Here we go again.

The Nausea Gets Worse Before It Gets Better

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With the additional week of chemo -- frontloaded with the nastier, stronger Ara-C -- what had been a minor nuisance is turning into something more. More constant, more ever-present, this pit in my stomach. The taste, too. I can't get rid of it, even with all of the mints mom brings for me to devour. It's internal. The taste comes from inside somewhere, and mints do nothing for it.

You can emulate the taste, short term, by getting your key chain. Pick a key, any key. House, car, bike lock, whatever. Something nice and good and metallic and suck on it for a few minutes. Taste it. Enjoy the taste for a few minutes only but, please, do not drink a tall cold glass of milk. We have already learned that certain foods and tastes don't mix all that well with that yummy taste of metal.

With or without food, my body is unhappy with the metallic taste, or with the chemicals passing through it. It doesn't take much anymore: just the smell of somebody else's food moving past my door is enough to make me want to vomit. I've moved well past the stage of actually thinking it's kind of cool to just puke all the time. You know, strange things happening to your body, marveling at the way it reacts to new situations and new environments? Neat-o. I'm puking for no reason at all.

The novelty has worn off. The fact that my body is reacting to chemo is no longer gee-whiz cool. It pretty much sucks; a necessary condition on the road to remission.

The discussion, now, turns to comfort. I don't know if the steps we're talking about were ever meant to be palliative. Before Paul's lung cancer -- Stage IV when he was diagnosed, metastasized, already spread to his brain before any treatments began -- I'd never even heard the term before. Things will get pretty dodgy in the weeks ahead, especially after my additional week of chemo, but we haven't thrown in the towel yet.

We're not so concerned about ensuring that I'm comfortable in the final weeks or months of my life as we are about trying to find some way to offset the side effects of my treatment.

I don't bring it up. I don't ask for any drugs or anything. But I am past the point of keeping up a brave face all the time, shiny happy patient, pretending like the stomach flip-flops and constant kneeling visits to the toilet don't bother me. It is amazing what can happen when you actually tell the people who are caring for you when conditions are becoming unbearable.

Cindy brings up the subject first (in response, no doubt, to my recent complaints).

"You know, Robert," she says, "we can try to do something about the nausea."

"Stop the chemo?" I ask. No harm asking.

"No. Not that. We can give you marijuana. It helps ease things for some people. It just kind of evens out your stomach."

It's not like I'm embarassed about it, but they're always so matter-of-fact about these things. I don't want to say no, because I'm sure they wouldn't suggest it if they didn't think it was a good idea. But I'm not at all comfortable with Cindy's suggestion. I've seen patients downstairs. They stand outside in the rising sun, wearing bathrobes or pajamas, just beyond the sliding glass doors. They need their cigarettes. They need their morning nicotine. There are very few things I'd like to do less right now than join those frowning faces outside, smoking not so much because I want to, but because I have to. Doctors orders, I will need to tell them as I smoke marijuana from my wheelchair. Honest.

"Umm... I'm really sorry, but I don't smoke. I don't much feel like learning, either. Is there anything else?"

Spontaneous laughter. A smile as warm as the sunrise.

"Oh, it's not like that," she says. "It's a marijuana pill. Synthetic. We'll give you a pill."

Nice Try

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I'm curious and skeptical at the same time. I still don't understand how marijuana -- even in a synthetic pill-like form -- is going to help with the nausea.

"It's standard protocol," Cindy says. "It's not like you'll get high or anything, if that's what you mean, but it helps take the edge off. I can get you more information if you'd like."

I don't think I ever went against a recommendation from Cindy, Anne, Dr. Collins. Anyone, really. I'll ask plenty of questions. I will try to gather as much data about a new procedure, or a new medicine, trying to understand symptoms and side effects and everything, but I never said "no." I trusted their judgement. Anything to help cut back on the puking at this point has to be a good thing.

And so we try it. Tiny pills that I drink with a lukewarm glass of apple juice.

I'm not sure if it works at first. It seems to work. It almost immediately seems to work. At least I think it does. I can't really tell.

My stomach begins to relax. I don't feel quite so on edge, quite so ready to run to the bathroom if a milk commercial comes on the TV, or somebody walks past my room with a bag from Jack in the Box (how can something that smells so good smell so terrible at the same time?). So I'm thinking it must be working, right, because the badness is less bad?

The weird thing is that after a few hours or so I'm actually starting to get hungry. I mean, I am so completely not hungry that this is pretty surprising. I haven't been hungry for days. All of my "meals" are coming from one of the bags dripping into my catheter. My mouth still tastes like metal, and I know I'm not hungry, but I can't help it. I don't even want to think about food (based on multiple past experiences). But I do?

What the hell?

I'm thinking that a burger would be really good right now. A Kidd Valley burger, with fries, a strawberry shake. I could call Dad or Jane, and I bet they'd bring me something when the come to visit. Mmm. Onion rings dipped in tartar sauce. Tasty. I can practically taste the food, it's been so long, my imagination suddenly working overdrive.

Reality jolts. Another sensation -- more familiar, more easily recognized -- interrupts my thoughts. Oh, man. This is what the pills were supposed to prevent. I'm scrambling to get out of bed so I can make it to the bathroom in time. Looks like it didn't work after all.

* * *

We try again. We try several times over the course of several days. I'm really trying to pay attention, to notice how everything feels, both before and after. The frustrating thing is that it always seems like it's working at first, but then it almost always goes bad after a few hours. I'm always getting hungry.

And then it dawns on me: although I never smoked pot in college, I was more than familiar with some of the after effects when buddies who did partake in a little weed now and then would come pounding on doors, just shy of two o'clock in the morning. Domino's would be closing soon. Did anybody want to get a pizza? Anyone? Like a large pepperoni or something?

Funny stuff. Hilarious. The unexpected consequences of a pill that I will no longer be taking, even though it turns out that they were working fine all along.

It was the munchies that were killing me.

Close to Everything

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My room is on the sixth floor of the University of Washington Medical Center. It's the cancer ward. The nurses are fantastic and well-trained. They pay attention to details. They provide an extraordinary amount of extraordinary care. When you approach the front desk, you will turn down the hall immediately to your left. I am in the second room. I am close to everything.

The rules are strict, but a little different than what they were in England. Between Lancaster and London, the number one rule when I was outside my room was that I needed to wear a surgical mask. All sorts of badness could be transmitted through the air, especially within the confines of the hospital. Wearing the mask keeps the badness at bay. Here, we are not so concerned with what I might happen to breathe while walking through the hallways -- the off chance that somebody might sneeze and it might linger and then I might, maybe, get sick from that airborne whatever -- as we are with physical touch. As long as hands are washed regularly, and always before touching me, the mask is all but irrelevant.

This is one of the reasons I try to get out and walk at least once a day, even if it's only one lap around the floor. So I'm a little vain and don't want to be seen with a mask. I'm bald, barefoot, wearing pajamas. I'm holding onto a rolling cart with one hand. It's got my chemo and other medication hanging from the top, all of which drips into the clear plastic tube stuck into my chest. There are visible bruises (especially through the white cotton pajamas) along my side, gathering at my waist. I am more than fine ambling up and down the halls like this.

But ask me to wear a surgical mask? In public? The horror.

If I don't need to worry about anything other than washing my hands when I get back, and making sure that nobody touches me -- don't anybody come anywhere near me -- then I'll walk around whenever I can.

Dr. Collins will scold me, of course, when I go barefoot. Glass punctures and hospital floors might not always be spotless and a certain somebody hasn't proven to a certain doctor that his feet won't bleed all over the floor when flesh meets glass. Somewhere during the summer, I will have slippers, too, but for now I'm a rebel. I'm dangerous. I life live on the dangerous edge, walking barefoot through the hospital.

Next Door Neighbor

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When I leave on my little rebellious barefoot walks I will pass other patients in the hall. It's obvious when I pass other patients. There is no confusing those of us pulling our carts and medication along with us for visitors who will drive back across 520 after the traffic has cleared up a bit. Aside from the rolling carts, most of us shuffle along without purpose. We're not walking with our heads up, alert, scanning the numbers outside the closed doors. We're just moving along, trying to help our legs remember what it's like to walk, one foot in front of the other until we complete the loop back to our rooms.

There isn't much in the way of small talk. I'm not there to make friends, nor do I feel much like engaging in hospitalized variations of your typical hallway conversations.

"Hey! How's it going?"

"Lousy. Thanks for asking, asshole."

New visitors will be lingering outside my door when I return. Sometimes it's a pack of white coats. Fresh new faces, young, earnest, ready to learn. Sometimes it will be another friend or old family member coming to visit for the first time, as the news expands through circles.

Sometimes people are waiting for me, but quite often they are there for the woman next door.

There is a woman staying in the room next to mine. She is in the first room from the desk, the closest room. She is even closer to everything than I am. Our two doors are adjacent. The hospital is almost like an apartment complex, with entrances to rooms paired as they move down the hallway. I don't know much about this woman other than her name -- Susan -- and that knowledge was only glimmered from overheard conversations.

I've just come back from a slow walk. A handful of people were lingering outside my door when I'd left, and they're still there, staring at their shoes, shuffling from one foot to the other. It is a silent, uncomfortable dance. Cindy is waiting inside. We've got another test to do, or temperatures to take, or food to ignore, or something.

I'm curious about the woman next door. I've never seen her before, not when I'm trying to get some exercise, or even when I'm being wheeled from one end of the hospital to the next.

"Do you know the woman next door?" I ask, nodding toward the wall that separates our two rooms.

"You mean Susan? Of course. What about her?"

"I'm just curious."

"About what?"

"I mean, you don't have to tell me if you're not supposed to, you know, or whatever, but I was kind of wondering what kind of cancer she has, you know, because I don't think I've ever seen her before."

"She doesn't have cancer," Cindy tells me. "She's in a coma."

Could Be Worse

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Either Cindy doesn't share much additional information with me, or I've forgotten it over the years. Susan is in her mid-thirties. She was in an accident of sorts, and has been in a coma for at least several months. She doesn't respond to anything -- light, noise, proximity of family members. I assume she must be getting her food the same way that I am, not that either of us can taste anything anyway. Nutrients from a bag, dripping into a tube. It doesn't sound like she's in critical condition; they have a separate ward for that. She still needs a great deal of personalized care, attention to details, but she's not hanging by a thread.

My bed faces the wall that separates our two rooms. It's easy to stare at it, easy to stare at that wall and just let the view blur and fade to black.

I've been starting to get more fevers lately. They spike pretty high. 104, 105, 106. Something like that. One minute I will be so unbearably hot that Mom and Cindy will be constantly replacing cool towels on my chest and forehead. Then it will swing and I'll be so cold that my body shakes. Warm blankets will be brought in, stacked three or four deep on top of me while I'm curled in a fetal position. Knees touch my chin. Cindy brings in the demoral, plunges it into my Hickman. It doesn't take long before my muscles relax and the chills go away.

Everything gets fuzzy.

I stretch out my legs and stare at the wall.

My face is starting to get numb.

I try not to think about things too much. If I start thinking about the details then I'll be able to find all sorts of things to worry about. The fevers are a little scary. They're not terrible, but they keep coming back, and they do worse things to my body than the nausea. Where are they coming from? When will they stop? What if there's an infection someplace really bad, like my lungs, or my brain...

See. This is exactly why we need to stop thinking about everything so much. What ifs don't help at all.

The demoral cuts the edge. I'm blinking in super slow motion, like a super slow-motion super hero. My eyes are ballistic. Eyelids shut with a slam. Everything goes dark. BAM! Open again. The wall is still there. My feet poke out from underneath a pile of blankets. You can't handle this, these eyelids of super-slowness. They slam shut again. They are heavy. I'm just blinking, but it's slower than anything you can imagine.

I don't have to think. I don't have to think about anything when my eyes are closed in the dark.

But it doesn't stop me from doing it anyway.

My eyes sweep open, running a quick status check. Lines are still plugged, blood is still pumping, stomach is neither happy nor unhappy. All systems are okay. Not great, but not terrible, either.

Could be worse.

Man.

This is what my grandfather -- Mom's dad -- always used to say. Ask him about anything. Ask him about the stockmarket, the Mariners, weather in Portland, or the steak dinner -- always well done -- he'd picked his way through. How was it, Grandpa? How are you doing?

"Could be better, could be worse."

Of course it could be better. That's an easy answer: let's go back in time six weeks or eight weeks or something and poof! Magic wand. No leukemia. But that's not very likely. We've got to play with the hand we were dealt.

But it could always be worse. I could be dead, first of all, which I'm not. But even more than that, today will never be as bad as the other days. Today's not bad. Today is okay. But there was that one time, a week or so ago? Puking then was much worse than it is now. And, wow, I can't imagine spiking a temp as bad as that one a few days ago. Look at my arms: I'm not even bleeding anymore. That was bad. We don't push the logical problems with this -- that the worst days couldn't all be in the past. I'm sure I would have been able to find something else that was worse than the bleeding. Aliens could have shot out of my stomach. Something.

I'm not losing any limbs to the cancer, which would definitely be much worse than what I'm experiencing. Leukemia doesn't spread, or metastasize, or need to be operated out. I know that I don't want to go under the knife. What if I needed to have my leg amputated just below the knee? I've seen other patients with other cancers. I feel bad. I feel bad that their cancer is so much more visible than mine. Tumors that need to be cut out, body parts that need to be discarded.

I might still be in England, far from home, with no visitors coming in and out every day. Mom told me that Pan Am had the right to refuse the second flight, because of my reaction to blood on the first. She'd been working out different angles while I slept in London. Friends of friends from Boeing to the military and we had some kind of backup -- some kind of trans-Atlantic military transport. But even that could have fallen through. What then? The protocol would have been the same, I'm sure, but I'd still be a stranger in a strange land, wishing I was somewhere else. No good could come of two weeks of chemotherapy working against a lonely, homesick heart.

Cindy and Anne might not have cared about me as much as they do. They could have been crisp and professional and maybe a little cool. Distant. I might have had different nurses altogether.

There are so many ways it could have been different. So many countless ways it could have been worse.

I stare at Susan's wall and I'm mostly just sad.

None of what I'm going through seems all bad compared to being on the other side of that wall.

Happens All The Time

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Cindy is taking my pulse. Two fingers rest lightly on my left wrist. She watches the seconds tick past on one of the many cool watches she wears, big watch faces, bold colors. Her hand touches my wrist for six or twelve seconds.

"How's it?" I ask.

"Okay," Cindy says. She puts the back of her hand against my forehead. "Feeling warm again?"

"Not really. I mean, maybe a little."

The thermometer comes out. It's like a big battery in a blue pastic case. There's a thin metal rod attached to the case with a tightly wound cord. Cindy has been doing this a lot recently. We take my temperature much more frequently now, trying to gauge how often (and when) my fevers come. She pushes the metal rod into an attachment to the side of the box; it comes back out with a clear plastic covering. More sanitary that way. So I won't taste the metal -- not that it matters.

I'm not sure how long we keep it under my tongue. She holds the digital read-out so we can both watch it. It's easy to guess how high it will go based on how high it starts, and how fast the numbers change. I'm spending most of my time above one hundred.

Cindy takes the thermometer out of my mouth and writes down a few numbers before moving to the foot of my bed. She touches the lower part of my leg, still buried underneath sheets and blankets.

"Rest," she says. Her presence is comforting, reassuring, steady.

Neutropenia

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A couple of definitions are in order, courtesy a medical dictionary at Teens Living With Cancer:

Neutropenia: Less than the normal number of neutrophils (leukocytes) or "polys" in the circulating blood.

Polys (neutrophils or granulocytes): The group of white cells that is important to your ability to resist bacterial infection. A "poly" count of less than 1,000 indicates less than normal protection and considerable risk of infection.
Everything has been low, okay, blood counts, platelets, polys, red blood cells, white blood cells, weight, energy, whatever. You name it, I didn't have enough of it. Nature of the beast.

We're getting technical, though, learning new words all the time. This isn't just throwing all the medicine available at me hoping some of it sticks. There is science involved, here, culled from decades of research. That's why we notice when things change. It's not an obvious shift, but it does mark a difference in how we'll need to approach my treatment. Details matter. Precision matters.

We're all about numbers these days, watching the steady drop of so many different counts. We watch my polys closely. They're a leading indicator. When they dropped low enough, they announced that I'd become neutropenic. A colored sign was placed outside my door -- probably red -- to remind everybody coming in that they would need to take extra precautions. It's a simple thing: when I'm neutropenic, my body will not be able to fight infections by itself. I'll need lots of help to keep any infections at bay in the first place, but even more help, in case I happen to get an infection somewhere, to actually get rid of it.

So it makes sense that I've been getting fevers. They arrive out of nowhere, though, with increasing frequency and strength. They are very mysterious. Very sneaky. We don't now where they're coming from, but it makes perfect sense that I'd be getting them. It makes even more sense when you know that I'm not "just" neutropenic anymore. Those extra seven days of chemotherapy did a serious number on my internals. Whatever straggling polys I had left were quickly eradicated by the chemo. I've bottomed out. My poly count is a big fat zero. I've got nothing.

Every return fever, then, is cause for concern. It's why I'm hooked up to so many different antibiotics, why Cindy and Anne and Mary and every other nurse on the floor spend so much time in my room. They're constantly swapping out meds, monitoring my temp, trying to head things off before they get bad.

Things change when your immune system has stopped working.

We're more aggressive, now, about finding out what's been causing all of my fevers. They can't just show up on their own. They're symptomatic of something else: one or more infections, somewhere, kicking me when I'm already down. But where? Nothing is obvious. We've kept my Hickman clean; there are no festering sores or oozing puss around the entry site. When I take two deep breaths with a cold stethoscope on my chest, then two more with the stethoscope on my back (one more, please, deep again, deep breath, please) my lungs are clean and clear. We've started scheduling multiple x-rays to validate that there are no infections in my lungs.

I should expect these fevers, right, with the neutropenia and all, but while it's okay to expect them, my doctors absolutely will not tolerate them. Unless I'm able to magically stop them on my own (which I can't), then everybody will continue to search relentlessly for the source. It's not good enough to just keep on keeping on. Demoral helps, almost instantaneously, with my convulsive chills. Tylenol manages to ease my throbbing headaches and lower my high temps. Together, they form an effective one-two punch against my fevers, but they don't do anything about eliminating the source.

That's what my doctors are after. That's the mystery they want to solve.

Hello, Ampho

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We're trying something new. A new drug, designed to take care of one of the many possible sources of my fevers. The drug is called amphotericin. Apparently, it's pretty ridiculously strong. Lots of possible side effects with this one, but we're hoping it will take care of the fevers.

"Funny thing," Anne explains to me the first night. "You'll think it's funny, Robert."

"What?"

Wheel of Fortune has just wrapped up, and Jeopardy is about to start. I never watch these shows at home, or at school, but here I'm a captive audience. I absolutely love the marketing genius behind having these two shows back-to-back. Lowbrow to highbrow. You're either "too good" for the fill-in-the-blanks letter spinners, or "too normal" to watch the braniacs go at it, forming questions for the challenging answers. I'm not even ashamed to admit that I'm hooked.

"The ampho has some side effects. Dr. Collins wants to prep you, first, before you get the ampho, in order to mitigate them."

"And?" I love Anne's company, but come on already. Just give me the meds and be done with it. There's game shows to be watched.

"And one of the side effects is that you might get bad fevers."

"I'm already getting bad fevers. I thought this stuff was supposed to get rid of my fevers."

"Uh-huh. It will. It's for infections, though, Robert, not fevers. Not directly, anyway. The ampho is strong, and effective, but one of the known side effects is that it will likely cause your temps to spike."

"You're kidding."

She doesn't need to answer.

Here's where I just roll my eyes and sigh. I'm taking drugs to help prep against a fever that I might get from a drug that I'm taking to prevent fevers. Of course. Of course it works this way.

"So what am I getting first?"

"Demoral and Tylenol. Same as usual."

I can't help but laugh. It's gonna be quite the cocktail.

Anne and I will watch Jeopardy together for weeks. The ampho needs to be consistent. Same time every night. When Jeopardy starts, I'll swallow my Tylenol, and she'll push the Demoral in. It's not a rush, but it does smooth the edges. We wait until the first commercial break. She sits with me, ten or fifteen minutes of quiet time, the two of us trying to beat the oh-so serious contestants on screen.

Everything is slowing down. The demoral is kicking in. Anne asks me if I'm ready and I nod or shrug or smile -- whatever the ritual calls for -- and she plunges the ampho. It's warm. It is quite the mix. I try to hold on, try to stay awake until the end. Double jeopardy awaits, and then we get to see who's willing to gamble their money for a chance to win it all.

Sometimes I manage to stay up. Most of the time, though, I don't

Nitey 'nite.

Recurring Dream

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My bed sheets are white. They are white and smooth against my hairless legs. If I'm trying to get comfortable, my legs will swim all over the bed, kicking this way, that way, this way again. When the fevers begin to chill, there will suddenly be warm blankets piled on top of the smooth white sheets. My body shakes. I can't stop it. Teeth chatter uncontrollably, arms and legs tighten, and I roll to one side, trying to bring my legs to my chest. It's so cold.

The demoral helps. It relaxes everything, makes the chills go away. It makes me even sleepier than I was before. My legs might rotate once, under the sweaty sheets, as I roll semi-consciously onto my back.

There is a village on my stomach, built among the foothills. My knees are a towering mountain, almost always covered with snow. Hundreds of tiny buildings -- houses, a monastery, various shops, the town square, a spiked wooden city wall -- sprawl from the foothills, scattered throughout the sparse hills and rolling countryside. Young men and women gather food from the wilderness. They hunt, or farm, or fish, whatever is necessary to survive the harsh winters and even harsher summers.

I will shift in my half-sleep, trying not to move my knees, knowing that scores of villagers will perish.

The survivors will bury their kin, set out to rebuild the broken buildings. I will watch the funeral pyres halfway up the mountain. Smoke and flame stand out against the snow. A long line of mourners winds its way back down the mountain.

It is an unrelenting existence.

There is nothing I can do. My face is flush. I'm sweating. I'm starting to get hot under the cover of so many blankets. I've got to get out. The demoral is wearing off, or the Tylenol, and I'm running from cold back to hot again.

I will have to destroy the village. I try not to think about it, try not to think about the carnage I'm about to unleash on so many innocent lives, both hoping and dreading that the village will return tomorrow, a new generation of villagers braving the dangers of the mountain.

You Give Me

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My fevers are persistent. They do not go away. I'm sure that there are any number of conversations that take place between Dr. Collins and my parents, details that aren't exactly hidden from me, but that are filtered down, summarized, presented to me on a need-to-know basis. The ampho is probably working. I mean, it has to be working, even though the fevers haven't stopped.

Maybe they were multi-source fevers, and the fungal infection part of them have stopped. Or maybe we're thinking that the fevers aren't from any kind of ampho-defeating infection after all, but that regardless of whether or not I've got a fungal infection now, it's likely that I'll have one in the future, so we'll keep it up, just in case.

Meanwhile, we're still searching. There's nothing obvious, nothing external, so I make several visits to the radiology department. My doctors want to take a peek inside. Just a peek. There must be something amiss, and hopefully the x-rays will help solve the mystery.

Meanwhile

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I've been off-campus for almost a year. I am supposed to back at Carleton right now, living in an Evans quad with Brady, Aaron, and Dave. It's gonna be heading into spring term. There are frisbees to be tossed, warm spring afternoons stretched out on the hill, watching softball games unfold below. Beer, too, we'll need a keg of that at second base.

We need to make plans. We need to figure out whether or not the four of us will be living together again in the fall, although it's looking more and more likely that Brady is going to transfer, which sucks, but will ultimately be cool for him.

Aaron, Tor, and I could probably figure something out with Ken, depending on who gets the best room draw numbers. We'll want a West Side dorm. Davis if we can get it, but Sevy is okay, too. It all depends.

I'll need to start thinking about what classes I'll be taking in the fall. It's gonna be my senior year. Going to be. It is going to be my senior year, English major, and a decision will need to be made already in the spring, here, whether or not I'll be putting together a senior thesis, or taking the hellish full-day comprehensive test. If I opt for the paper, I'm pretty sure that I'll need to put together a reading list over the summer, so that when classes start up again in September I'll have at least a solid thesis to share with my advisor. To say nothing of sizing up my various requirements within the English department, along with the times of year they're offered.

And before I get too far ahead of myself, it's not as if I'm getting a clean slate from my professors at Lancaster. They've already been more than understanding. But it's not as if they're going to give me a free pass. Here, Mr. Brown, please enjoy full credits for our courses, even though you bailed out halfway through the term, and have yet to take any kind of final exams. It will be a fair trade -- one final essay for each class, and I get all of my credits while I'd been in England. Without those credits, I don't graduate on time from Carleton. Hell, even with those credits I'm going to have to come back for an extra term.

But see? Already that's long-term thinking. I'm focused on September, not next year. I've done the math. Even with the additional complications I've already run into, I'm still looking at something like five full months before school starts back up again. That's plenty of time. That's plenty of time for treatment and more complications and dealing with those complications; for coordinating with Aaron to register me for fall classes; for getting a good room with Ken and Aaron and Tor; for spending a week or two with my laptop propped up on my bed, books and papers piled at the foot of my bed, banging out the papers that I need for the credits that I need to get back to where I belong.

Carleton is all of my points on the horizon. It is my short, medium, and long-term goals. If my focus is anywhere, it is on what needs to happen to get my body back to Minnesota by September.

Leukemia? It's just a speed bump -- a major speed bump -- preventing me from getting on the rest of my life.

Learning Not To Think About It

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Never been good at taking pills. Some kind of gag reflex, always, whenever I tried to swallow even something as small as an aspirin. I mean, do you put the pill on the back of your tongue? What if you fill your mouth with water and the pill is still there? Do you swirl it around? Take another drink? I'd always seen people in movies and television just throw the pill and tip the head and bammo, it's been swallowed. I could never figure it out. Give me a too-big bite of hamburger and a glass of cold milk and I'll down that sucker in a heartbeat. But a tiny pill turns me into an incompetent, gagging wreck. I think about the whole process way too much.

But I've been pretty lucky. Most of the medicine I've needed over the course of my first two decades of life have always been available in either liquid or chewable forms.

Not so anymore.

In addition to all of the medicine that's given to me directly through the Hickman, there are the pills that I've had to learn how take. My doctors are ruthless about the pills they give me, ruthless and cruel and mean and heartless: not only do they tell me that if I throw up within half an hour of swallowing my handful of medication I'll just have to take the pills again, but they enforce the rules too. Pills don't do me much good if they're flushed down the toilet. So if I puke 'em up, they'll bring new ones for me to swallow.

Bastards. They act as if they want me to get better.

Since I've already got the lingering nausea -- almost always there, a constant reminder -- it just takes a small smell or taste to kick me over the edge. Although the gag of trying to force even the tiniest of pills down my throat isn't enough to make me puke, it does set a few things in motion. My stomach is empty, but I keep swallowing anyway. There's a lump that won't go down. I need to spit. Get up, head to the sink, clear my throat and spit into the sink.

"You okay?" Dad asks.

I'm back in bed, lying as flat as I can, not thinking about my throat or my stomach. I'm not thinking about it. I'm not

"I'm good, Dad. Thanks."

Swallow, swallow, swallow. I'm absolutely not thinking about swallowing another pill just in case I accidentally throw up. I'm not looking at the clock, not trying to remember if it's already been thirty minutes.

"You okay?" Dad asks again? "Feeling sick?"

I'm at the sink again, spitting, shaking my head "no."

It's just that I really need to vomit, now, even though I know that when I'm done in the bathroom, I'll have to take my meds again. And when I'm done with that, I really don't want to be standing here again, spitting into the sink, trying to keep the pills down.

So I figure it out. I'm not hitting the golf ball, I'm hitting through it. I'm not trying to hit a home run, I'm just trying to make contact. It takes practice. It takes time. But time is something I've got plenty of right now, time to perfect my pill-swallowing technique.

Correction: I do not swallow pills anymore. I enjoy a refreshing glass of apple juice, and the pills just come along for the ride.

Invitation

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Seems like I've got an appointment in radiology every day. When it's getting close to the time to head down, an orderly brings a wheelchair to my room. The knock on my door is tentative. Dad follows alongside for the first couple of trips, helping steer my "little buddy," remembering the many twists and turns through wide, mostly empty hallways. After awhile he takes over. When the orderlies show up we tell them that we can handle it from here. They don't protest much, hurrying back to wherever it is that orderlies congregate.

We're on our way out when we pass a larger-than-usual crowd in front of Susan's room. Red, yellow, and blue streamers have been taped outside her door. A cluster of helium-free balloons hang on the corners. Unfamiliar faces wait quietly outside, whispering, some still holding brightly-wrapped presents.

They move out of our way. They line up against the wall to my right, smiling, nodding, waving courteously.

"What's the occasion?" I ask.

A middle-aged man answers. Must be her father. Hair thinning at the top, turning silvery-gray at the sides. He looks vaguely familiar. He makes eye contact, which is nice, because sometimes wheelchairs make people uncomfortable.

"It's Susan's birthday," he says. "We're having a party. You're more than welcome to stop by later, if you want. We've got tons of cake. Please stop by later. Help yourself."

"Thanks. Will do. We're just heading out for some X-rays."

"Good luck," he says. "See you when you get back."

Decisions

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We're walking to radiology together, my Dad and I. He's really doing the walking for the both of us, wheeling me along these empty corridors.

I don't ask my parents too many questions. It probably doesn't even dawn on me that I should ask them how they're feeling. We're in survival mode. We don't think. We just do. We are this action-oriented family, taking me to my various appointments, or holding my hand while I sleep, or bringing packets of cards and letters that were sent to the house instead of the hospital. There's not much to discuss, I guess, when we all know that as bad as it gets, it's all part of the price. Daily trips to radiology -- as exhausting as they can be -- are required.

So I keep my thoughts to myself on this trip. Wondering what my action family would do if it was me in Susan's room. What if I was in a coma? Would I even be aware of it? Would I be in some kind of constant dream state, or would the screen be like snow after midnight, when the local channels have gone off the air?

Would my parents need to make a decision for me? Would they need to decide together?

They've been separated almost my entire life and had always done a good job of remaining civil towards one another, even during a particularly difficult stretch of custody-wrangling when I was eleven. I don't remember that period of my life very well. My sister does. She has a very good memory, and she'll probably disagree with my assessment.

I know that she'll tell both of our parents, later, that they need to stop worrying about not being in the same room together when they visit me, to not make the important part of the hospital visit the fact that one has to suddenly leave as soon as the other arrives.

But how do you set apart twenty years of being set apart? How do you simply come together in a snap of your fingers like that?

What if I was in a coma? I'd be alive, right, but not really. My hands wouldn't even twitch when Mom held them in hers. My face is a blank, unmoving slate. You hope, of course, that everything you do or say registers somewhere underneath the surface, but how long does that last? Weeks? Months? Could it be years? How long do you continue to watch your child do nothing, say nothing, respond to nothing? How do you even imagine a point where you need to consider the possibility that you maybe need to make this very important decision for your child?

She's in her mid-thirties, Susan. She's not a child, but she's still their child, and she's completely, totally, dependent on the decisions made by her parents.

Does she even know it's her birthday?

Does she even know about the balloons and the streamers and the presents?

On Waiting and Waiting (and Waiting)

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My frequent visits to radiology were, surprisingly, probably the single worst part about my early days (the first six or eight weeks, March 3rd to April 23rd). I knew that Cindy and Anne would take care of me, that Dr. Collins would solve the mystery of my fevers, that most everybody in the hospital had my best interests in mind.

The kind of support network I had between my nurses and physicians made anything manageable. Of course I worried about things while I was in their care. But I never worried that they weren't always acting in my best interests. It's one thing to be concerned about the future because, well, frankly, not much had gone according to plan thus far, but it's another thing to question the quality of your care.

That's why radiology was the worst part of the early days for me: we were forced to do exactly that kind of questioning.

They were busy. They were busy with other patients, and backlogs and whatever, and I know nobody likes to wait, okay, and crowded waiting rooms are annoying for everybody, and everybody thinks they're special and deserve special treatment to get them moved to the front of the line, but seriously. Come on. I seriously had no stupid immune system. Kind of a good thing to have in a hospital. Was it too much to ask that when they called me down for my appointments that I didn't have to wait 30 or 40 minutes to get my x-rays taken?

It pissed Dad off, too. He's usually pretty mellow. Pretty low-key. We're both like that, both willing to let minor annoyances slide. But neither of us liked this waiting room BS. It wasn't "minor" at all.

He wrote a letter to the hospital Administrator on April 3rd:

My son, Robert K. Brown, was admitted to the University of Washington Hospital on March 3, 1990 and is currently an in-patient in the Oncology Department, 6SE, receiving treatment for acute myelogenous leukemia. I have nothing but praise for the Oncology Staff; they have been helpful, supportive, and informative. I am deeply concerned, however, by the performance of the Radiology Department, and am writing to describe what appears to me to be a system that needlessly endangers patients.

As a result of chemotherapy, my son's auto-immune system is suppressed and will stay that way for some time. Consequently he is extremely vulnerable to infection, and Oncology has gone to considerable lengths to isolate him, and to educate him and the family in the precautions necessary to avoid infection. Unfortunately, the monitoring procedure also requires that we have chest x-rays taken 2-3 times a week, in the Radiology Department.

The routine seems to be for the Radiology Department to call the Oncology Department to tell them when to send a patient down. However, the paperwork required for processing the patient is not initiated until after the patient has checked in at the desk in Radiology. Yesterday I escorted my son down to Radiology. Ten minutes after we checked in at the desk, I inquired about the delay and was told that he "wasn't in the computer yet" and that it would be a few more minutes. The total wait was 20 minutes, with only a paper mask for protection, in a public corridor with people passing my all the time; the other choice for waiting was a public waiting room filled with out-patients. The 20 minute wait is apparently on the minimum side for weekdays -- the wait can be an hour or more, particularly if the patient requires a hospital escort.

The Oncology Staff has requested several times that the Radiology Department call when they are actually ready to process the patient -- after all, the trip only takes a few minutes. My experience yesterday was apparently a sample of their "being ready." I realize that the Radiology Department might be busy; I find it inexcusable, however, that patients who are in very fragile health and susceptible to any and every stray virus are required to risk infection because the radiology department cannot manage what should be a relatively simple scheduling process.

My son has been in your hospital for one month, during which time he has undergone two bone marrow aspirations, had a catheter installed, and been on chemotherapy for two weeks. While he knows he will have to put up with more of the above, what he really hates and dreads is the prospect of going down to Radiology for a painless chest x-ray, where he knows he will sit and wait for an infection to come by.

Because of his illness, my son will be a frequent in-patient at your hospital. I certainly hope for his sake, and that of other patients with suppressed immune systems, that you will be able to correct this problem quickly.

Two weeks later, exacty, Dad received a quick and appropriate response from the hospital. His original letter was forwarded to the Administrative Manager of the Radiology Department. To their credit, they implemented a few important changes.

Dear Mr. Brown:

Your letter of April 3rd was forwarded to my office for attention. Due to your observations, the Department of Radiology is taking corrective action.

Effective immediately, all patients known to have suppressed immune systems will have their radiology examinations expedited, rather than waiting in the queue with other, potentially infectious individuals.

As you noted, our Radiology Department is exceptionally busy. We do strive to see everyone as quickly as possible. However, sometimes we experience glitches with equipment, paperwork, or sheer patient volumes that bog the operation down. In addition to moving patients, such as your son, to the front of the queue, we will make every effort with the Oncology Department to have paperwork processed in advance thereby effectively scheduling these examinations and minimizing or even eliminating wait times in these cases.

I would like to sincerely thank you for calling this matter to our attention, as it sometimes takes an objective eye to see a problem and help get it solved. If you have any questions or suggestions regarding the Radiology Department, please feel free to contact me -- as I welcome your feedback as a means for improving quality of care.

I'd be almost out of the hospital by the 17th, and future hospital visits would bring different complications that wouldn't require quite so many x-rays, but I'd like to think it was still a good thing, big picture, long-term, this exchange of letters in early April, 1990.

Stopping By

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My appointment takes a couple of hours. Part of it is time spent in the cold hallway outside the waiting room. We'd wrapped a lightweight white blanket around my shoulders while we'd waited. We needed more x-rays than normal, so the appointment took longer than expected. Maybe Dr. Collins had ordered some additional shots, or maybe the technician saw something interesting and wanted to get more detail, or maybe they just screwed up the whole thing and didn't bother to tell me that they needed to do things over. Whatever the case, there was a lot of standing and turning and holding my breath, and turning again, please, hold still, please, and, as I moved to sit back down, we're not quite done yet, please.

I'm beat.

After the elevator returns us to my floor, I ask Dad to leave the wheelchair at the main desk. I need to keep using my legs. There are so few opportunities, what with everybody wanting me to stay in my room as much as possible, and they're already skinnier and weaker than they've ever been. Even though I don't really want to walk, I know I should, and it's only ten feet or so from the desk to my door. It's something.

The crowd outside Susan's room has left. It is quiet. Streamers and balloons still run along the door frame, a swirl of primary colors. Her door is open, but not by much. I turn to look at Dad.

"Whaddya think?" I ask. "Think it's okay to go in?"

"Seems pretty quiet," he says.

"I'll just knock. They said to stop by, right? I can just knock and see."

There's no response, so I knock louder. Then: two voices, male and female, both at the same time, come in, come in.

The curtains are drawn and the lights are off, but there's still enough mute light to see into the room. I motion for Dad to follow. Susan's parents are sitting together in the chairs up against the windows on the opposite side of the room. They stand up as we enter, walking quietly over to shake hands and introduce themselves.

"I'm sorry," I say, smiling underneath my surgical mask, keeping my hands to my side. "Infections, you know. I have to be careful."

Dad does the hand-shaking for both of us. He stands next to me, his left hand on my back, introductions with his right. Even though I'm pretty sure he's met Susan's parents before, he does the name thing again, for my sake.

Susan's Room

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Susan's room is exactly like mine. I mean, of course I don't have all of the birthday decorations, a half-eaten chocolate cake with chocolate frosting in the recessed space underneath the TV set, a matching set of red plastic plates, cups, napkins and forks waiting for guests to serve themselves. And it's backwards. It's rightways for her and her parents but it's backwards for me, a mirror image, sinks and doors and windows in places that make sense for others, but not for me. It's like Bizarro World without all the rough angles and frustrated super villains.

I gravitate to the cards and letters on her bulletin boards. I'm a complete sucker when it comes to reading what other people have written. When I was seventeen, eighteen, visiting Dad & Jane in Long Beach when they'd move to California for a few years, we went to the Labrea Tar Pits. Dinosaur bones, yeah, mud, concrete, tar, whatever the hell they sunk in. You can read about it. Rent the audio tape and listen to the droning narration as you looked around and didn't see anything exciting or dramatic about the slow deaths of creatures that had lived thousands of years ago. Except in the middle of the hallway, there, behind numerous glass display cases, local schoolchildren had written (and illustrated) letters of thanks. Their handwriting squeedged smaller as it got closer to the right side of the page. Creative rules dictated punctuation and capitalization, and the longer the word, the more likely it was spelled phonetically, but none of that mattered. Every letter was this stunning display of genuine thanks. There was palpable emotion behind the crayon drawings of T-Rexes scribbled halfway over with thick black strokes.

I read every letter. Dad and Jane were surprised, later, when they asked what I'd liked best about the Tar Pits and I launched into this half an hour description of David Ortega's letter, Jeremy's detailed Stegasaurus, and Beth! Walker's! Prolific! Exclamation! Points!

They were the only things in the whole place that were actually alive, the only things that captured my interest.

I move to Susan's bulletin boards, first, instead of to her bed, partly because I'm drawn to what other people write, always have been, curious what her loved ones would write to her, but also because it's the farthest point in the room from her. Truth is that I'm instantly awkward, suddenly ashamed that it has been a month and this is the first time I've ever visited. And I'm not even visiting, just answering an invite from her father by glomming onto the wall that separates our two rooms.

Not that I'm gonna walk up and down the halls, knocking on everybody's door, checking in checking up, but she's literally next door. I can't leave my room without walking past hers.

"But I'm sick," I tell myself.

"You're just laying around half the time anyway," I answer back.

"But I'm here to get better, not socialize..."

"Common courtesy, asshole. Her parents are going through a lot."

"My parents are going through a lot..."

"Selfish prick."

"The hell you say," I yell back. "I'm going through a lot!"

"It's always got to be about you, doesn't it?"

Susan's mom interrupts. I'm just staring at the bulletin board, still, and she gently touches my shoulder.

"Excuse me," she says. "Did you want some cake? I'm sure Susan would like you to have some."

She sees me staring at the multicolored rectangles of paper on the wall, and must think that I've been eyeing the party food that's between the two bulletin boards.

"No," I say. "No thank you. I really can't eat anything."

She apologizes. There's this sadness behind her eyes. She says I'm sorry and it feels so very sad, more than it should, her hands folded together, eyes downcast.

"Do you want some for later? We could wrap some."

I know I'm not going to eat it. Thinking about it starts a minor chain reaction, from wanting to remember what moist chocolate cake tastes like -- licking frosting from my fingers, washing it all down with an ice cold glass of milk -- to my empty stomach grumbling, sending a brief, heaving warning to my brain.

I'm not going to eat a single bite, but I nod anyway.

"Please. Yes, please." I say.

Susan's mother had come prepared. She removes a serrated knife and a roll of Saran Wrap from a crumpled, well-used grocery bag on the floor. The knife edge is wrapped in foil. She cuts into the cake as if she's drawing a line, then a little wiggle, the smaller piece separated from the rest of the cake. She carefully balances a hefty slice on the flat of the knife, setting it onto one of the few large red plates remaining. Saran Wrap is doubled around the plate. She tucks it in. Creases the edges, both thumbs and forefingers starting at twelve o'clock, meeting again at six.

"It's good," she says. "I made it myself."

Worst Patient Ever

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Cindy is hooking up a bag of antibiotics. I don't know what they are specifically, but I understand what they're meant to do. It's almost as if we've created an artificial immune system. We are kind of taking a kitchen sink approach, trying to keep any number of different general, multi-purpose antibiotics trucking around inside of my body, picking up the slack for my non-existent polys.

It takes a few minutes. She'll need to remove the empty bag, all flattened out, then check my other lines. She adjusts the clamps, speeding up one drip, slowing down another. She moves one smaller bag to a different hook, making room for the new antibiotics.

"Cindy?" I ask. I'm just killing time. "What are some of your other patients like?"

She smiles.

"What do you mean?"

"I dunno. I mean, are they as big a pain in the ass as I am?"

"You're not a pain in the ass, Robert."

"But you're in here ALL the time." It's true. She is. "You probably don't have any time to take care of anybody else."

"So?"

I don't know where I'm going with this. Just fishing for compliments, I think, trying to feel like less of a burden. Is it the drugs or the long days or the steely resolve of absolute certainty in the face of a hella lot of uncertainty? I get tired and sad. I will feel, sometimes, as though I'm this unbelievably heavy rock that's been lashed around my family and friends, and I'm just dragging everybody down with me. I mean, I can't just up and die. Imagine what it would do to them.

Even Cindy and Anne. I know it's their job to care for me, but I also know that it's been becoming about more than just the daily grind for both of them. How do you distance yourself from your work when you're in the care-giving business? It's intrinsic, isn't it? You have to care about people, don't you?

"So?" Cindy asks again.

"Tell me about your worst patient. Your absolute worst patient ever."

She laughs. "It's not you, if that's what you're getting at."

My turn to laugh, now. She's sharp.

"I'm just curious."

"Okay," she says. She sits at the edge of my bed. "This was a few years ago. Different people react to the news differently. Some people deal with it okay, but some people get very angry. We had this guy, some kind of lawyer, I think, who seemed angry to begin with, but got worse as his treatment progressed."

"What kind of cancer did he have?"

"Lung cancer. He was a heavy smoker. He'd had to get a tracheotomy, and he hated that, too. He was very, very angry about the whole thing. So whenever we had to clean his site, or take his temp, he'd spit out blood or phlegm at us, through the tube."

"He'd what?

"Yeah, I know," she says. "He was very mean-spirited. I think he was used to being in control. He couldn't control his cancer, and it made him angry, so he took it out on us."

I can't think of what to say. It pisses me off that somebody would treat my nurse so badly. I'm so possessive all of a sudden, so Mr. Shocked that anybody could have ever been so awful to my lifeline, Cindy, who has never been anything but kind and generous.

Do A Little Dance

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I expected to greet with the news with much fanfare and hoopla. Dr. Collins would be ecstatic, practically giddy, and my family and nurses and visiting friends would form a horseshoe around my bed, clapping and cheering, you're in remission, Robert, congratulations!. I figured we'd be all festive and excited, but the truth is anything but that.

Don't get me wrong.

It is absolutely great to be in remission. Great with a capital "G" and a Tony the Tiger drawl. If the additional week of chemotherapy hadn't sent the leukemia packing, I don't know what we would have done. A third week? Doubt I could have stomached it. Bone marrow transplant? With no donor lined up, and no match for me anyway, even if we could have coordinated everything, found somebody close, irradiated my body, odds are I'd just reject the marrow anyway. Graft v. host, or host v. graft, whatever, it's just the simple fact that without a close match, my body would have said buh-bye to that foreign object, that poseur trying to pass itself off as something that actually belonged inside my body.

No chemo, no marrow? No, thanks.

So the alternatives are clearly much worse, and a week or so earlier I'd probably do a little jig, you know, do my little funky eighties dance where I don't actually lift my bare feet from the floor, just plant 'em close together, my upper body doing most of the moving, trying to pay attention to the back beat, hands in these loose fists. It works well for me, because it's a low energy kind of dance style. I mean, you're gonna break a sweat if you keep at it for a couple of hours -- or if the deejay decides to mix up the techno with some old school Rock Lobster, or even older school Twist and Shout, both songs forcing you to get down, down, down, close to the floor, then up, up, up again -- but you're not going to be sucking wind after only a few minutes, either. It's a good hospital room dance.

A week ago, even, had I learned that I'd gone into remission, I would have done my dance, still tethered to my little buddy. We would have stood in place together, my bag-holding friend and I, and we would have done our little Cabbage Patch, or Churn the Butter, or whatever you call it when you're all happy about everything, Go, Robert! Go, Robert! Go, Robert!

But now?

Now it's fever this, fever that, practically every second of the day.

We're going to radiology, getting bronchoscopies, ramping up the freqency of my blood tests. We are not eating, which brings up a whole different set of concerns. We're not miserable, not really, but we're not exactly having endless fun, either. There's simply no time to celebrate, and even if there was some time, it would still feel a bit premature to do a victory dance.

We're not out of the woods yet. There is still much work to be done.

Clue

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I was a something less than completely honest earlier. I maybe said something like there's nothing obvious when trying to solve the mystery of my fever-causing infections.

Hmm.

There's this thing in my chest, this catheter.

Dr. Hickman put it there, this thin plastic tube that carries his name, running from outside of my body all the way up into a major artery, providing easy access for all the chemotherapy, the supporting medication, my liquid diet, everything.

It's clean. I wrote that before. It is clean and well-cared for.

But it is so obvious, so external. It's the only foreign object currently lodged into my body. It's not unwelcome but it is so the likely answer you'll find in that tiny envelope after they've exhausted all other options: Dr. Hickman, with the catheter, in the chest.

Foreshadowing

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"The good news, Robert, is that with your remission, we don't expect you'll need any additional chemotherapy in the coming weeks. The catheter is important, but no longer critical."

Dr. Collins is standing on formality less and less these days, actually sitting in one of the chairs against the windows. The blinds are shut tight, but sunlight shines through tiny pinholes. Everything glows.

I'm curled up on one side. Blankets and demoral again. I practically want to apologize to her for getting chills again, for having this high temp, for not being able to make everything go away on my own. She's been prescribing all this medicine. She's been scheduling all these appointments. I could at least manage to respond to some of it the way she'd expected.

She's patient with her patient, though. She understands.

"We'll keep up with the x-rays, but I don't expect to find anything new there. Your lungs look clean. Your Hickman looks clean, too, for that matter."

She's at the edge of my bed, now, blocking some of the light. My catheter dangles over the edge. It's connected to everything. She carefully peels up a corner of tape, looking at the entry site underneath the clean white gauze.

"I'm sorry, Robert," she says, putting the gauze back into place. "Unless we are able to find out what's been causing all of your fevers, this will need to come out."

Bronchoscopy

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Pulling my catheter is a last resort. It's the last thing any of us wants to do, but we've seriously looked everywhere and the fevers keep coming back.

We will check one final time, a new test -- something I'd never heard of before, a bronchoscopy -- to see if we could approach the problem from a different angle. X-rays afford a view of the inside of my body, but from the outside. They're flat. They're all black and white and shades of gray, and mistakes can be made. Of course we check from the front and the back, and from each side, me, wearily, standing and turning, turning, turning, turning, but lung infections can still hide from the x-ray technician.

The bronchoscopy give us something much, much better: a view from the inside, in color, live action. Better technology, better quality images, better everything.

All of these improvements do not come without a price. The procedure itself is nowhere near as simple as an x-ray, which requires little more of me than simply standing and turning, over and again. It won't be the worst medical procedure I'll need to deal with over the course of the summer, not by a long shot, but I'd be hard pressed to think of anything much worse up to this point.

Again, it's all relative.

I am admittedly not the best with getting stuff down my throat. The chemo has made it worse. I'm making strides, swallowing pills, drinking juice, but I'm still not at all good with solids foods, solid anything. So the prospect of a long tube snaking down my throat is pretty disconcerting. It'll be thin and long, the tube -- at least two, maybe three feet long. It needs to be able to be passed through my open mouth and down my neck at which point the doctor will work some magic, using the tiny fiber-optic camera on the end to find an angle into my right lung.

It's a flexible tube. Space age materials, I'm sure. All very high-tech.

The doctor had told me his name, earlier, and I've already forgotten it. He explained that even though the tube was flexible, all fancy and expensive, it wouldn't move on it's own. It was spaghetti-like, but not spaghetti, understand? You ever do that trick? In college, just goofing around, where you get a long strand of spaghetti and you swallow it halfway so part of it's just dangling out your mouth? You can bend over the table and wiggle it around; because the other half is in your body, it's not going anywhere. Half the table says sick while the other half laughs, so instead of just eating the thing you pull it back out.

So he's navigating this thing up and down my neck, in and out of my lungs, cameras rolling. This is the price we need to pay for higher quality images -- the best quality images -- of my lungs. Infections? You there? We'll find you if you are.

I'm breathing.

I am trying to breathe.

Relax, Robert. Just. Just. Relax.

It's fifteen minutes. Thirty. We only want to do this test once. The doctor will be precise and methodical, checking and double-checking. Right lung, left lung, back to the right, then left, just to be sure. It's half an hour of a nurse at my side -- used to this role, I'm sure -- holding my hand, a steady presence, whispering it's okay, relax, relax whenever my muscles suddenly tighten. My throat convulsively constricts around the tube.

Shhh, she says, wiping the tears from my cheeks. Everything's going to be okay. Everything will be fine.

A Package From Carleton

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A thick manila envelope arrives with the mail. It's all multi-colored ink and smiley faces and hearts and shiny metallic stickers. Postmark is from Northfield, Minnesota, and the handwriting is so very familiar.

Sophomore Year: Ken, Tor, Adam and I are living in this quad on the corner of third Musser. It's an awful dormitory, tiny rooms, barren walls, all battered and weathered with time. But we are living together by choice instead of some random freshman room draw. We're the All I-90 room, starting with me on the far left, picking up Adam in Pullman, Tor in Missoula, then continuing south and west until we get to Ken in Rapid City.

Interesting thing about Musser, other than the fact that it's this lousy box-like reject dorm from the sixties with a twin -- Meyers -- halfway across campus is that in order to cram more rooms into the box, there are five single rooms per floor, two on each end, and an extra for the RA. One of the few dorms on campus where you could find a single. Linda Gates lived in the no-bigger-than-a-walk-in-closet immediately across the hall from us.

(that's one of the ooh, so shocking things for some parents when they show up at Carleton for the first time, that crazy mixed-sex floor thing, girls and boys living together, a world gone crazy)

I can so easily get sidetracked here, so easily remember how good it was for the four of us to have Linda so close, how good it was for her, too, going through some difficult times that we wouldn't know about until later. Aaron lived down the hall from us, too, who I'd room with again for both of my senior years, who would eventually become the best man at my wedding. A lot of good came from that year on Musser.

The Beer Board

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I loved living there, okay, loved living with Tor and Ken and Adam, with Linda just across the hall. It was like a virtual quint, the amount of time we'd either spend with her in her single, or she'd spend with us in our quad. We had two rooms. We put all the beds into one room. In the other, in our main room, our "entertaining" room, we'd made this fake fouton out of a turned-over bookcase and an extra mattress. It was up against the window.

Spring term, Linda and I would crank the stereo. Fine Young Cannibals. She Drives Me Crazy. We'd jump up and down on the not at all bouncy fouton, shouting at the top of our lungs. We'd open the window to let the fresh smell of spring into the room. We'd yell out the window.

Our other spring term project (although it was probably started during the winter) lasted much, much longer than I think any of us expected.

All of the halls in Musser were lined with white tile. Like a bathroom. Not exactly the most aesthetically pleasing architecture, most certainly not the dorm featured in all of the campus literature. The one saving grace was that there were half a dozen large bulletin boards, a good four feet tall, five feet long, three on each of side of the dorm. Between various door decorations and whatever people decided to put on the bulletin boards, it wasn't all that bad.

Well, actually, it was.

The boards were a nice idea, but people crapped them up pretty quickly. I mean, even if somebody decided to cut out a whole bunch of photos from the latest J.Crew or Benneton catalog and pin them up, you wouldn't be surprised to see mustaches or other graffiti by the end of the weekend. It wasn't like the dorm was this horrible broken down place. It's just that people didn't really care. You live there for a year, do your time, then move on to a better spot on campus.

I'm sure it was Linda's idea. We maybe came up with together one night, casually, all of us in our room, drinking whatever cheap case of beer we could pick up at the Muni. There was a board across the hall from us. We walked past it every day, every day thinking how much it sucked. We're sitting on the floor, or on the "fouton of luuuv," picking at the beer labels.

We could do something cool. Something different. We could do something that nobody has ever done before, that would be cool, and that drunk grafitti writers could respect, and it could be all artistic and everything, and I'm absolutely certain that if it wasn't Linda's idea, then she was largely responsible for it's implementation.

We wrote a letter to the appropriate campus groups. We used Linda's Macintosh, printed the letter in a clean New York font, requesting building maintenance to remove all of the crapped up scraps of paper that tattered our board, and then please, please, paint it white. A solid four by five rectangle of clean, unblemished whiteness.

From there, we stopped ordering kegs of beer for our parties. Bottles only. We wanted variety. We wanted any number of different brands of beer: Pfeiffer, of course, because it was a staple, but also MGD, Kiran, Budweiser, Old Milwaukee, Coors, St. Pauli Girl. We started looking for cases of beer based not on the price per bottle, but on the colors and shape of the label.

Saturdays and Sundays we walked our black plastic garbage cans down the hall to the shower. We filled them with halfway with lukewarm water, then brought them back down to our quad. Homework was done on the fouton, or in the chairs lined up next to the bookshelves. Linda did much of the work. Empties were added to the garbage cans, left to soak for thirty minutes, an hour. Labels were carefully peeled off, laid out along an empty bookshelf to dry. Some labels were more difficult than others. You had to be patient.

When the labels were dry, we'd glue them to the board. Patterns were formed. A Pfeiffer border. A large swirl of MGD labels. A checkerboard of Bud and Bud Light. We didn't have any kind of master plan as we began to glue the beer labels to the board, but we recognized the patterns as they began to take shape. It was a work in progress. We'd drink and soak and paste.

Nobody touched it. Nobody defaced it. This was a surprisingly brilliant, completely accidental strategy. Drunk college students living in a crappy dorm tend to break things, making it even worse. But when they'd stumble up the stairs to third Musser, turn right, look right again at the collage being created, they were humbled.

It's beer, dude. It's beer and it's art, and, ahhh, man... dude! It's beer!

We'd drive down to the Muni. Linda was the only one old enough to buy. Before we'd left, she'd stood in the hall outside of our rooms. There were too many people involved, now. We'd all stand there, all of us, Ken, Adam, Tor, Aaron, Dave, Gates, KQ, and we'd survey the patterns, an eye on the decreasing white space, and we'd think about how many cases we'd need, what brands to look for, as we invited more friends to another spring term party.

Help us, we'd write. Help us finish these cases of beer. Help us finish the mural.

aaron and i stopping by a few years after the work had been completed

On the bottom left, Brady carefully cut out the Pfeiffer wording. He filled the space with each of our names, hand-drawn to match the red script, something you probably wouldn't even notice unless you were looking for it.

It's been awhile since I've visited Northfield, but the board was still there at our five year reunion, and I'm pretty sure I remember it there at our ten year reunion as well. Who knew it would last so long?

Unexpected Visitors

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I always open mail from Carleton first, so many cards and letters, so many get wells and wish you were heres. They're comforting. They help to keep my eye on the prize, on getting better, quickly, so I only end up missing one term.

The manilla envelope is light. The hand writing is most definitely Gates.

Finals are wrapping up. If they haven't already, everybody's left campus for spring break. I don't expect anybody to call or write these days, either too busy studying, or too busy partying, so the thick envelope comes as a surprise. You know it would suck if it was cookies or something. If Gates and KQ had decided to stay up one night, walking down the hall from their dorm room (the two of them had landed a nice double in Sevy for their senior year) to bake cookies in the lounge. I'd try to eat them. If they'd made some cookies for me, I honestly would have tried to get them down.

Fortunately, it's not cookies.

It's a video tape. The spine reads We Miss You, Robert! Each letter is a different color. There's also a blank piece of paper with the same message spelled out in large letters (all blue this time), signed by Aaron, Gates, and KQ. Little hearts and cute smily faces and everything.

I am so excited. Cards are great. Letters are fantastic. Aaron and Brady have also put together a few mix tapes for me, which are also most outstanding, popping them into my Walkman, eyes closed, trying to pretend like I'm back on campus and we're deejaying a party in Evans, dancing on coffee tables, couches, wherever. These things are all good, all wonderful.

But nobody has ever made a video tape for me before. I don't have any idea what's on it. I can't wait to watch it. We pop it into the VCR.

There's no introduction, no fancy titles or soundtracks, just the tape popping and hissing to life, then a jarring hand-held view of friendly, familiar faces. Tor and Brady and Aaron are all in Gates and KQ's room. Melissa is there, too, my smiling, black haired, black-leather-jacket-wearing future wife. They're talking directly to the camera. They're talking to me, filling me in on important things (like the fact that Tor and Gates have been *gasp* dating), and not-so-important things (like the strange kung fu noises Brady made the night before last while walking back from a party at Hill House).

It's twenty, twenty-five minutes long. Karen and Linda share camera duties. They start in their room, and give me a virtual tour of campus. They walk outside in the rain, stopping at the Library, and Laird, moving to Nourse, then Evans. They stop people I know -- and sometimes complete strangers, asking if they know me -- demanding that they mug for the camera.

I'm crying and I'm laughing and I'm holding my breath, waiting to see who they might happen to bump into across campus. Gates and KQ do a goofy skit in Nourse Little Theatre where they both profess their undying love for me. Periodically they will break into a variation of Paula Abdul's hit song -- We take two steps forward, we take two steps back. We miss you, Robert. We really want you back.

It is the best kind of medicine.

It is instant healing.

A Numbers Game

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It's not a game, but it should be. We should have a contest. How high do we think my temps will run today? How many times will I need some demoral to keep my teeth from chattering uncontrollably, to help me find any kind of warmth under the stacks of hot blankets, piping hot, steaming, like a Robert pancake.

Or what about guessing the other numbers that we're constantly monitoring: my absolute dearth of any measurable blood counts. Will they be coming back today? Which ones? We'd like something.

Polys would be fantastic. They would be perfect, in fact, the best line of defense against elusive infections, but we don't want to get carried away. Some of my own platelets would be cool, too.

Hell. Anything.

Any new blood counts would be outstanding. Any little blip on the chart to demonstrate that my bone marrow is waking up again -- still woozy from those mutiple sharp blows to the head -- shaking off the pain, slowly, slowly finding a way to get up off the mat, preparing to hit back.

Things We Are Not Meant To See

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Laura stops by to visit after donating platelets. She breezes into my room. I'm always happy to see her, and not just because her platelets do a great job of bumping up my counts. Between her and Mom, I continue to get the best boosts. They would take turns. Mom might start it off, going three or four or five days in a row until she needed a break. Laura would then pick up the baton and run with it for another handful of days. Then Mom again. They did it for weeks, months, whatever. They did it as long as I needed the platelets.

There's usually not much to tell about the whole process. Laura spends a couple of hours at the blood center before driving to the hospital for a quick visit. The platelets arrive shortly after she does. They come by ambulance.

"Hey," she says. "I've got to tell you something. Kinda funny. Kinda gross."

"What's that?"

She laughs, pulls her chair up closer to my bed. "I'm at the blood center, you know, hooked up to the machine."

That's how you get the platelets. I've never actually seen the machine, just heard it described many times before. It's like an arm chair. You're sitting down, one arm extended, needles and tubes. Because you're only there to donate a very specific part of your blood, not whole blood, the tubes lead first to a machine.

It's a "spinning machine." Different components of blood have different weights, different densities. The tube extracts a certain amount of whole blood before it fires up. The spinning causes the blood to separate. There's another tube attached to the machine at the point at which platelets are known to separate, and a small plastic bag slowly is slowly filled. Good news is that you get the rest of your non-platelet blood back.

Once, when Mom was donating platelets, the blood bank hadn't spun off enough of her blood from the platelets. The mix wasn't quite as pure as it could have been, and I ended up having a reaction. Red spots on my arms and legs, an almost immediate rash, a good, high temperature spike. After that, the blood bank took extra care to make sure that the platelets were well-spun.

Blood to machine. Spin. Separate. Blood back to body. More blood to machine. Spin again. Separate again. Return again.

This continues for an hour or so, until the smaller bag has been filled.

"Usually I just read," Laura says. "But I happen to glance at the machine, once, when I turn the pages. There's something different about my blood this time. It's collecting there in the machine and it looks wrong somehow. I ask one of the nurses for help."

"What was it?" I ask.

"Just wait.

"The nurse comes over and looks at my machine. She taps it a couple of times. I'm not sure how to describe it, but there was this additional layer -- some kind of clear liquid -- that I've never seen before.

"'Eat lunch recently?' the nurse asked. 'McDonald's? Burger King?'

"It was Jack in the Box. I was running late for the appointment, so I just grabbed a cheeseburger and rings from the drive through. You know how she knew?"

"Don't tell me."

Laura nods.

"All the fat in my lunch was getting collected, too. It was still in my blood. You should have seen it. All that cheese and grease. It was seriously like the grease jar under the sink, except that this was coming from inside my body."

"Mmm. Tasty. Hope I'm not getting any of that with my platelets later."

She laughs.

"Nope. I got it right back after the platelets were spun out. I asked if they could spin the fat out, too, but they wouldn't, or couldn't, so it's right back inside me."

She shudders, briefly, her whole body shivvering once, like she's really cold, or she's just swallowed a gulp of the wrong drink from the wrong plastic cup at a crowded party, Jagermeister instead of Amstel Light. She sticks out her tongue.

"If I never eat fast food again," she says, "it will be too soon."

Starting To Get A Little Stir Crazy

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We've moved on. We've kind of moved on to a different stage in the game. Chemo stopped dripping a couple of weeks ago, a lifetime ago, the last of those damn bags pushed aside to make room for more antibiotics. And I know that it's not the very last bag I'll ever get, because you don't just go into the hospital once and everything is cured. Dr. Collins has explained that we'll have some follow up rounds later in the summer, consolidation, but for now, for this round, the chemo is over.

If the first stage is chemo, then the second stage is recovery. We don't know how long this next stage will last. We have expectations. We have estimates. But it's not like the bags of chemotherapy that we can control, stopping when we want to. This is a waiting game. This stage is all about waiting for things to come back, and we're on pins and needles.

Nobody uses these words with me (or maybe they do and I just forget), opting instead to share this information only after a few years have passed. "Hanging by a thread" is one of the favorites. "Nip and tuck" is another. Sometimes Mom will just shake her head and get all quiet when we have these discussions, years later. "If only you knew," she will say, another popular phrase, her voice quietly trailing off.

We don't talk about whether or not the chemo has worked anymore. We know that it did. Hell, yeah it worked. Of course, you've got to narrow your definition, be precise about what you mean by "worked," otherwise it's too easy to worry about other things. When we're talking to friends or relatives, we'll say that the chemotherapy "worked" because now I'm in "remission." I don't get into details. I don't explain that, well, technically, my bone marrow isn't actually producing anything (yet, we always parenthetically yet), so that's not necessarily the best thing.

But I'm in the second stage, okay, I am recovering, which also means -- and don't you forget it -- that I am now cancer-free.

So let's move on.

Let's get this recovery thing done so I can get back home. I'm going to be turning twenty-one at the end of the month. I've been pretty accommodating so far. I haven't put up much of a fuss. And I understand that circumstances dictate one's actions as much as anything else, that nobody expected I'd be in the hospital in the first place, so we all adjust our expectations and everything.

But let me be clear about this: I am absolutely not going to be stuck in this room for another five, six weeks, whatever, missing out on the chance to celebrate my twenty-first birthday. I will not have balloons and cake and party guests here in this clean, well-lit room.

I will not effing celebrate my twenty-first birthday from inside of this effing hospital.

There will be bars and beers, and even if the bouncers have to double and triple check my ID -- reconciling the shaggy head in the picture with the bald dome I'm sporting -- at least I'll be out of my bed, actually wearing clothes instead of these damn pajamas all the time. I'll be with my best friends. We will celebrate an important milestone together, as many of us as possible, with as much normality as we can muster in these extraordinary times.

Losing My Hickman

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It's good news and it's bad news. Dr. Collins doesn't play the game, asking which one I'd rather have first. She just launches into the good: everything is clean. Sparkling. The single expensive, full-color, uncomfortable bronchoscopy has confirmed what multiple thrifty, black-and-white, simple x-rays were telling us all along. There are no infections in my lungs.

Dr. Collins smiles. She shrugs. She stands at the foot of my bed and does this little half smile, apologetic, because she knows that as good as the news is -- no infections! woo-hoo! -- what it really means is that the Hickman is coming out. We're both reading between the lines. She's standing there, right, all cool and calm and collected, and it really is good news, that the myriad tests I've undergone recently have turned up nothing but nothing.

But we both know where this is going.

Dr. Collins is standing at the foot of my bed and I'm trying to pretend like I don't have a temp. Stupid. Stupid, Robert. I'm shaking. Blankets are piled. She can read my charts. She knows better. I haven't been able to go, what, two consecutive days without spiking a temp? My teeth are chattering while I wait for the demoral to kick in.

If it's not my lungs, then it's my clean, infection-free Hickman. It's really not all that complicated. It's binary. A process of elimination.

It can't be the Hickman, but then again, it can't not be.

Pull!

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I seriously don't remember what's involved with actually removing my catheter. It's designed to be removed, okay, with this clamp underneath my skin that somehow makes sure that there will be no additional bleeding when the long plastic tube is removed.

I won't even need to go under, counting backwards from 100. It's just a simple tug. I'd never pulled on the catheter hard enough (never wanted to), but Dr. Hickman won't need to do much more than put one hand firmly on my chest, near the collar bone, another hand securely gripping the tube that extends out of my body.

One ... two ... three.

Yank!

Done. Goodbye easy access to major arteries.

Big scheme of things? Not much. Not much at all. We're still checking for infections, every few hours. Instead of being able to pop the needle into the free port at the end of my catheter, we're back to slapping the inside of my arms. Good veins, here. Tight rubber around my upper arm, or my elbow. Flex, please, then relax as the needle finds a vein, somewhere, right arm, left arm, it doesn't really matter.

I don't care much about needles anymore.

I'm finding it hard to care about much of anything anymore.

Deeper and Deeper

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I'm having a hard time remembering things. Not the obvious stuff: my name, family members, today's date, the name of the current president, all that. It's not amnesia. I'm sleeping so much. I'm sleeping all the time, waking up, sleeping again. Sometimes I can't tell. Conversations are lost, stuff from yesterday, last week. Mornings and afternoons and evenings are repetitive. My days bleed together.

I don't know for sure if Dr. Collins ever explained that we'd need to be doing this thing, but she probably did.

We already know that I've got leukemia. We know that it is a specific type: Acute Mylegenous Leukemia. What we don't know (but that I'm sure we suspect) is the exact sub-type. It makes a difference. Protocols might change, depending on how much more accurately we're able to hone in on the type of leukemia with which we're dealing. There are eight sub-types of AML, all with different symptoms and treatments, different methods of identification.

And so, Dr. Collins patiently explains, we get to the purpose behind this latest test: based on my textbook symptoms, we suspect a particular subtype. There is one way to confirm this with absolute certainty. There will be no doubts after this test, where we will look to my DNA for answers.

I don't have any idea what my doctors needed to extract to get the results of this latest one, or what the process was to get to the desired results. Probably just more blood work. Much more complicated, detailed blood work than anything I've had up to this point. The word "cytogenics" is used several times. I don't pretend to know much about genetics beyond some rough high-school science class memory of Gregor Mendel, and peas, pea pods, combinations that can and can't be based on what your parents have. I don't even know what my DNA would look like. Links in a chain, I suppose. A double helix. It's all very comic-book like when I imagine the labs and the glowing vials and the swirling camera angles, mad scientists in crisp white coats and Thomas Dolby electric hair cuts, cackling over my DNA.

One of the things they're looking for -- one of the things they knew to look for -- they've found. My links are in the wrong order. Two pieces of the genetic chain are not where they're supposed to be. They're unique enough, and have clear enough markers, that it becomes obvious when the right people look for the right things. Two chromosomes, fifteen and seventeen, have switched places.

Now we know: AML M3. The symptoms had supported this, and now, too, my genetic markers.

For me this is just one more in a long line of diagnostics, a nice-to-know, but no different than the countless other test results that confirmed what we'd already suspected.

For my mother, it is something else entirely. This test makes my leukemia appear to be less then random ; it is no longer a lightning-bolt of bad news from the sky, an out-of-control city bus as I'm walking across the intersection. Suddenly there is a feeling of responsibility: where does my DNA come from if not my parents?

Foot In Mouth Disease

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Laura walks across the room with barely a hello. Just a "hey" as she sfuffles past my bed. She doesn't bother to knock. Why should she? She's my sister, after all, and she's just finished donating plaletets for me again. She has to take a couple of hours off of work to drive down to the Blood Center, and then to sit there while the platelets spin out of her body, so she usually schedules these appointments for some time in the afternoon. When she's done, she'll drive over to the hospital so the two of us can visit for a couple of hours before any of the parents visit.

She falls into one of the chairs. She grabs at the armrests and kind of lift-wiggles it until the chair is parallel to my bed. She kicks at the other chair with her feet, pushing it, too, no longer faces my bed. She slumps in the one, stretches her feet out in the other.

"Damn," she says, a deep sigh, eyes closed, hands running through her hair to take out the loose pony tail.

She's been putting in a ton of hours at work lately. She's beat. She starts venting, my sister, about work and increasingly lousy traffic into and out of the valley, and stupid drivers on 520, and the whole elaborate get-up that she has to deal with every couple of days (especially now that Mom isn't donating platelets any more) and she's so damn tired. The whole thing is so exhausting.

I'm trying to listen to her. This is about her, not the boy in the bed. We all know about his troubles, but what about the sister?

She dropped out of college the summer before. It was a remarkable decision, obvious in hindsight, but the source of a great deal of confusion and concern leading up to it. It simply wasn't a good fit, maybe never had been, the whole college thing. She'd spent the summer trying to figure out how to explain to the parental units that she didn't want to go back to finish up her degree, that she wanted to work, find a job, apply herself to something that she felt was actually WORTH something.

Best decision she's made about her education and her career, this difficult step to leave her undergraduate work unfinished, and everybody (surprisingly) supported her, leading to more success than she'd probably ever imagined possible.

But she doesn't know this now, this dark gray April afternoon, sprawled out across a makeshift bed in my hospital room. She shares her frustrations for five minutes or so. I'm supposed to be the good little brother, listening, acknowledging, agreeing that traffic sucks, and it sure does sound like that Amy is a sneaky back-stabbing bitch. The weather sucks, too. Right on, sister! So tired, lately, too, working long hours and weekends. And donating plaletets must be a royal pain in the ass, too, all that time spent at the Blood Center, and no more junk food for lunch, either, on top of everything else.

Hold it.

Hold everything.

Helping to save your brother's life is a pain? Excuse the hell out of me?

I'll blame the drugs. I'll blame the drugs and my own fatigue, sick and tired of being stuck in a hospital bed for four, six, eight weeks. I don't remember what I said next. When my parents told me about it a few days later, I didn't believe them. Laura hadn't visited for awhile and I'd asked why.

"Because of what you said to her," they answered.

"What did I say?" I had no clue. (to this day, I still don't remember.)

"You told her that you'd die if she didn't donate platelets."

"What?" I'm shocked. No way I said that.

"There's no way I said that," I tell them.

"She's pretty upset about it. She's doing everything she can for you, you know."

"I know. Of course I know that. Why would I say such a thing? I know she is. Why would anybody say something like that? I'm not going to die."

Easter Weekend

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Cindy will be gone for the weekend. It's Easter, and she and her husband, Chris, have made some plans to spend some time with their families in Cashmere, this tiny town up along some narrow Cascade Mountain highway or another, not known for much of anything other than being the home of Aplets & Cotlets. She knows how much more worse my fevers get when I don't see her at all during the day, although we can never explain exactly WHY it happens. It just does.

I'm surprised to see her on Saturday morning, but she said that she wanted to stop by, quickly, on her way out of town, to bring me a little something.

"It's not much," she says, handing over a bright yellow envelope. There are a couple of Snoopy and Woodstock stickers on the outside.

"Thanks. You didn't have to do this."

My two bulletin boards are completely filled with cards and notes and letters. I've shifted my Far Side calendar to the bottom, so that it's hanging over the edge, to make room for more cards. The cards have come from all over -- friends at Lancaster, immediately after I'd left, and, now that I've been in the hospital for almost two months, follow-up cards to make sure everything is going well; friends from Carleton, sometimes sending a card a week; neighbors; former teachers; former high school (and grade school) classmates; my parent's co-workers; daily cards from my Aunt.

I don't need (or expect) a get well card from Cindy. She's with me almost every day. She's helped in more ways than I could have ever imagined, and if I would have allowed myself time to think about it, I probably could have figured out that the reason my temps spiked the highest when she wasn't working was because I'd equated all of the good things that had happened since we'd arrived at the hospital -- all of the healing that was taking place -- with Cindy. If she wasn't there, my brain had quietly figured out, then things were not getting better.

"Careful," Cindy says.

I've opened the envelope. I'm taking out the card.

"There's something inside," she says.

Already in the envelope I can see tiny metal dots, shiny punches of confetti. They're falling out of the card. A few fall into my hand before fluttering further downward, pinpoints of color on my white bed sheets. The outside of the card has Snoopy and Woodstock dancing together, hands together, noses pointing skyward, their feet a circular blur. Inside, there are dozens of bits of confetti. More fall out.

"Catch those," Cindy says. "Those are your polys."

She's written the same thing inside the card.

We've been waiting almost a month, now, for my polys to return, and I wish it was simple as confetti inside an Easter card, but it's the thought that counts, and I know Cindy wants them to come back as badly as I do. I'll take them. I'll take absolutely anything at this point, even though these polys won't show up on any of my charts.

"Thanks, Cindy. This means a lot to me."

"You're welcome. Now don't get sick while I'm gone, okay?"

"I won't."

She hugs me quickly. "Okay, then."

Drifting

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Saturday and Sunday pass without incident. These things are the same. There is a sameness in my days, a kind of perpetual deja vu, this magnetic pull from my bed that makes my limbs so heavy, my body not strong enough to want to bother with resistance. Let the heavy lids close. Let the sleep surround.

Drugs arrive in the morning: benadryl to go along with the fresh blood hanging next to my bed. Are Mom and Paul here today or Dad and Jane? Who is with me today?

I am sleepy. Sleepy sleep tempts me.

White coats are in and out of my room. They blur. The blurring blurs mumble to my parents, their voices in and out, too, a "Robert" here and a "patience" there, sentences sifting into my dreams, then jarring me awake, then coaxing me back down again.

It's the same thing as yesterday. It's the same as last month.

I can feel the chills before they even start, like driving the line of a thunder storm. A nurse that is not Cindy puts her fingers on my wrists, takes my temperature with great care, brings one steaming blanket, two, and even though she's doing everything right, nothing happens until the Demoral pushes. It's the same: knees, chest, chills, all followed by the rush of the push, the melting draining whoosh, and then I'm sleeping again until someone wakes me.

I drift sideways through the weekend, waiting for Cindy to return.

They're Back!

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Rough hands are shaking me awake. Gentle hands, roughly. One of Cindy's slight but strong hands grabs my left wrist, the other pushes repeatedly against my left shoulder. I don't know how long she's been here.

Wake up! Wake up wake up wake up wake up wake up!

She's obviously back from the weekend, and I'm happy to see her, but I'm sleepy, too. There is no bright morning light trying to push through my curtains. The sun isn't even up yet; Cindy starts work early. Too early.

"Wake up, Robert," she says. "They're back!"

I'm groggy, not quite ready to process what she's saying.

"I know you're back, Cindy. But I'm really tired."

"Not me," she laughs. "Your polys. Your polys are back."

It's Just A Blip

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It's just a blip. The tiniest of tiny blips on the chart, but there is a number, now, where for weeks there had been none. I'm all a million questions suddenly, wide awake, reaching for the controls at the side of my bed, fumbling for the little button that's like a triangle pointing up. I'd like to say that I'm sitting up in bed, like a bolt, but I'm still too tired for that. The bed adjusts. It's motorized, adjustable, and it helps me get kind of vertical without having to expend any energy.

"Are you sure?" I ask.

"Positive," Cindy says. "Absolutely positive."

"How many?"

"Twelve."

"That's it? That doesn't sound like much."

Cindy laughs. "It's better than zero."

"Are you sure?"

"Very sure."

"Could it be a mistake?"

"Doubt it. We'll do some extra draws today. We'll make sure."

It's so completely unexpected, this rough early morning wake up call, these new counts coming back so late in the game. It's the best news we've had in a very long time. It's the single best piece of news we've probably received since I've been in the hospital. But that still doesn't prevent me from asking the obvious question. Maybe I just want to hear Cindy say it out loud.

"This is good, right?"

"Yes, Robert," she says, smiling, laughing. "This is very, very good."

Almost Home

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More counts return in the days that follow. Platelets are back. Polys creep higher. Hematocrit is up. Everything is up. It couldn't be anything other than sudden, but it's still surprising, and it lightens everybody's mood.

In a matter of days, we've moved from dark, ominous discussions about searching for an emergency bone marrow donation -- maybe even accepting a partial 4/6 match because it was looking more and more likely that my marrow would never recover on it's own -- to laying out the requirements for my departure. I'll still need to come back later in the spring and summer for more treatment, two more rounds of consolidation chemotherapy, but I'll be allowed some home time between those two rounds.

"Your counts will need to be at certain levels," Cindy tells me. "Your doctors should be telling you more about it, but there's some minimum thresholds they'll want before you can go home. Not just the main ones, either. There'll be a lot of different numbers they'll be looking at."

"How long?" I ask.

"Before you're back home?"

"Yeah. How long do you think it'll take before I can get out of here?"

"It depends," she says. "Depends on how quickly all of your counts recover. I wouldn't want to say. It'll be up to the docs."

"Can you guess?"

I'm itching. I am so ready to get out of this hospital, back to my house, my bed, a neighborhood that I'm familiar with, a couple of different loops, a mile or two, that I can run or bike. Being able to get up and out of bed, to actually get dressed again, to go out to restaurants, movies, whatever. Not to mention that it's less than two weeks, now, until I'm twenty-one. I can't wait.

Cindy smiles.

"You're doing awesome, Robert. You really are. You'll be home soon enough."

"Next week?"

Now she laughs.

"Just be patient. It won't be long, now."

Gimme Some Grub

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Cindy is right, of course. The few remaining bumps before I'm out of the hospital are minor. With an across-the-board increase in my blood counts, the chemotherapy has pretty much worked it's way out of my system. The fevers have vanished, which also means I'm not taking nearly as many meds throughout the day.

My appetite has finally returned, too. I'm surprised to find that I'm actually hungry again, that I'm thinking about getting some food into my system. It starts off with baby steps. I've been down this road before, tricked by drugs into believing that I'm ready to eat solid foods only to dash off to my bathroom. So I stick to the basics, steer towards the bland. The hospital continues to bring me three mostly square meals a day; I'll pick at the lightly toasted white bread, the saltine crackers, maybe nibbling at tiny cut up carrots or rubbery celery.

I'm trying to get more exercise during these days of rapid improvement, taking walks on my own through the deeper reaches of the hospital. Wheeling my "little buddy" into the middle of my cold floor, struggling to eke out a handful of sit-ups, or a single wobbly-armed push-up.

I'll visit the cafeteria once a day or so, rooting through the vending machines. Potato chips, Kit Kats, even the occassional can of Coke. It's all good. I can actually taste it, and everything stays down.

But now I'm ready for some real food.

Dad and Jane are back in town again, staying with Shelby. They want to bring a celebratory dinner -- remission for sure, plus blood counts, plus I've stopped losing weight, plus the light at the end of the tunnel, all of that -- and they ask what I'd like to eat. Anything. The sky's the limit. Any restaurant, any recipe, any stacked-with-toppings pizza from the swankiest joints in town.

For me, it has to be Hot Dish, easily my favorite family recipe growing up. One of my all-time favorite meals, period.

Hot Dish

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The recipe is simple. Had I actually grown up in Minnesota, I most certainly would not have been amazed by it's elegant mix of ground beef and egg noodles, a fresh onion and a can of creamed corn. And the tomato soup. Can't forget the can of tomato soup. That's, what, like two vegetables, a fruit, some grain (sort of), and meat. It's like a complete well-balanced meal that you can pretty much cook anywhere. How perfect is that? The only food group we're missing is dairy.

More on that later.

Had I not grown up in Seattle, I probably would have realized that "Hot Dish" wasn't some clever name that Jane had come up with for a taste sensation that's served, well, hot, but that it was the ubiquitous name for an infinite number of variations of the noodle/meat/vegetable casseroles that are served at potlucks and church socials and company picnics all across The Land of 10,000 Lakes.

But I didn't know. To me, this was a special recipe, a super secret family recipe, so simple and quick and easy.

Here it is, from the kitchen of Jane O'Dell. I actually had to call home my freshman year at Carleton because I'd forgotten one of the ingredients. Twice.

1 lb ground beef
1 med yellow onion, chopped (Walla Walla sweets are my personal favorite)
1 can tomato soup
1 can cream corn
1 16 oz pkg egg noodles

  1. Boil the noodles as per the package instructions.
  2. Brown the beef.
  3. Either grill the onion in the fat from the beef, pushing the nearly-browned meat into a wide circle around the outside of the pan, or -- my preferred method -- grill it in a separate pan with a little butter.
  4. In a large baking (or casserole) dish, mix all of the ingredients together, including the cooked noodles.
  5. Cover the dish with foil, and bake at 350 degrees for about 30 minutes. Salt to taste
This was the meal that I'd asked Dad and Jane to bring to me near the end of the month, when my body was finally telling me that we were ready to consume some favorite solid foods.

Does A Body Good

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One of the many ironies I've been able to enjoy about my leukemia is the one where I remember how much I've always loved milk. Growing up, I'd almost always preferred milk to pop. Freshman year in college is when, living away from home for the first time, you're supposed to put on those dreaded fifteen extra pounds. Much of that, I'm sure, comes from the freedom of being able to choose whatever the hell you want to eat or drink for meals. All the Coke I can drink? some might say when they see the fountain pop dispenser in the dorm cafeteria, proceeding to stack twenty short glasses onto a tray, filling them up.

Me? Who knows why, but I actually preferred the ice-cold glass of milk. At home, especially over the summer, I'd sometimes even put a glass into the freezer before dinner started so by the time the meal was on the table, I'd be able to enjoy a truly frosty cold beverage. All this means that I had strong freaking bones. My bone marrow might have managed to get all messed up, but the bones themselves? Solid.

Another thing about milk is that it's the only beverage I'm ever able to drink when I'm eating Hot Dish. Please don't ask me to explain these things. It's the same Pavlovian response I have to watching a movie in a theater; even if I'm completely stuffed, I absolutely cannot watch the movie unless I've got a bucket of popcorn and an equally large (and overpriced) gallon or two of Coke. Dr. Pepper. Whatever. Milk and Hot Dish go equally hand-in-hand. It is the way the world works.

So when Dad and Jane come into the room first, smiling, holding what appears to be still-warm baking dish of grilled onions and fresh ground beef and creamed corn and noodles and tomato soup, and it's that familiar, comforting smell that I haven't smelled in probably close to a year, at least well before I'd left for Lancaster, I know that I'm going to want to wash down my first few bites with only one particular beverage.

"Shelby is parking the car," Dad says. "She'll be up in a minute or two."

He starts to unpack a grocery bag. Napkins and bowls and some plastic forks and spoons. One of those little travel-sized salt-and-pepper shakers we'd bring on camping trips.

"Do you want something to drink?" Jane asks.

"Some milk would be great. I think they have some in the fridge down the hall."

"Are you sure?" she asks. She knows. She knows that maybe it's not such a good idea.

"Yes," I say. Definitely. There aren't any options in my mind. I'll drink it slowly. I'll give my stomach a chance to welcome these old tastes.

"I'll get it," Dad says.

Jane lifts the foil from the glass baking dish. Steam escapes. She folds the foil in half a few times, placing it back inside the grocery bag. She brings out a large spoon. She stirs the Hot Dish. More steam.

Dad returns with a couple of cartons of milk. The little cartons, half pints, that we used to get from the school cafeteria. The kind that has that little extra funky taste, especially when they've only just been recently put into the refrigerator.

I thought the nausea had passed. I thought it was so totally and completely rear-view mirror by now. But there's something. I'm not sure what's happening, but I recognize some of these sensations, and they're most definitely not the kinds of sensations I want to be emanating from my stomach when I'm about to partake in a victory dinner.

How many bites do I get in? Three? Six? At least a few for the taste, I'm sure, before I grab a carton of milk. I somehow think that drinking milk will help with the naseau, even with all evidence to the contrary.

Plus I'm a little embarrassed. I'm supposed to be better. An old family friend is here with us, and we're celebrating.

It's no use.

I excuse myself as I rush over to my bathroom, letting the door shut behind me.

It doesn't take long. When I come back out, Jane is already packing up the dinner. She knows how smells have affected me. Everybody's apologizing at once, then forgiving, saying "no, no, it's okay," then laughing, then trying to figure out what to eat for dinner instead.

I end up going with saltine crackers. Mmm. The crispy taste of victory.

Except For One

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I've got another new doctor -- the latest resident on our floor -- one of the effects of a long-term stay when you get three or four different physicians as they rotate through their various residencies. He's young. Clean cut. Short brown hair, always well-shaven. We'll call him Dr. Doug. He's friendly and jovial, and I'm sure that he knows there's not much left to do before I get to be shown out the door.

He does the standing at the foot of the bed thing as well as anyone. He's got the clipboard that may or may not have anything about me written on it. His arms are folded. The clipboard is pressed against his chest, held there by the folded arms. He dips his chin toward one of his exposed hands, kind of brushing at his lips with his thumb.

"Well, you see," he says.

He's young. Working on his bedside manner. It will get better, I'm sure, but I can already tell from his body language that it's bad news -- he's practically staring at his feet, shuffling them back and forth, aw shucks, too shy to ask the pretty girl next to the punch bowl, the one in the short summer dress, too shy to ask her to dance.

"We know how much you're looking forward to going home, Robert," he says.

"Next week," I tell him. "Next Monday. That's the plan."

"Yes, yes. Umm... well... about that."

Uh-oh.

Dr. Doug continues. "Your counts have made a wonderful, remarkable comeback, Robert. We're very excited for you. All your numbers are good. Umm... I mean... except for one."

Dammit.

"Which one?" I ask.

The clipboard is freed from the confines of his arms. He holds one end of it close to his stomach, tilting the top outward, as if he's holding playing cards and doesn't want me to see his hand.

"Potassium," he says.

"Potassium."

"Yes. It's coming up, just not as quickly as the others. It's still very low."

"Potassium," I say again.

He nods.

I never even knew we were tracking my potassium counts, and even if we were, they wouldn't matter nearly as much as all of my others. I'm not going to bleed to death with low potassium. I'm not more succeptible to infection. It feels like they're picking nits, now, trying to come up with reasons to keep me in the hospital longer than necessary.

"So who cares about potassium, anyway?" I ask.

"We do."

Dr. Doug has folded his arms over the clipboard again. His feet are solid. There's eye contact this time. Good, solid, eye contact. He's not smiling.

"You're not seriously gonna keep me here just because of that, are you?"

"I'm really, really sorry..."

Finally

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They've given me some pills to help bump up my potassium counts.

I can hear Dr. Doug explaining things to the collection of interns in the hallway outside my door. I'd been pretty upset, earlier, when he first told me that they wouldn't release me from the hospital if my counts remained low. It didn't make any sense. I'd beaten the leukemia, right, beaten it twelve ways from Sunday, and I wasn't going to bleed anymore, and I'd be able to fend off any new infections with my new healthy polys, and all the other white and red blood cells, and... and... and everything.

Didn't they understand that I had a birthday coming up? I mean not just any birthday, but the big two-one, legally an adult now? Doesn't that take precedence over any stupid low stupid potassium stupid counts?

He didn't budge.

"It's all or nothing," he'd said, "you don't leave until all of your counts are back."

Now, outside, he's talking just above a whisper, the quick huddle outside my room before the team comes in to let me know where everything stands. He tells them that I was angry about this as he's ever seen me, so close to the finish line, only to have it move back another hundred yards. Just be prepared he says.

So they bring me these potassium pills. Huge honking pills that are easily the size of a grape. I'm supposed to take them two or three times a day. The team nods wisely. These will help, they say.

I'm so very glad that I've been able to work on my pill-taking technique over the past month or so, because without all that practice, there's absolutely no way I'd be able to force one of these monsters down my throat. But force them down I do, with a cold shotgun glass of apple juice.

Within a matter of days -- running right up against the deadline Dr. Doug had drawn in the sand -- my potassium counts rocket ahead.

I'm golden.

It's April 23rd, 1990, exactly one week before my twenty-first birthday, and I'm finally going home.

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A Few Notes

robert (now and then)
(hover to see RKB in 1990)
After running two marathons in October 2010 with Team in Training, I've decided to "slack off" with just the one marathon in 2011.

This year will be in memory of Siona Shah, an amazing young girl who spent the final third of her too-short life battling leukemia with courage, grace, humility, and smiles.

It will also be in memory of my step-grandmother, Ruth, who passed away on June 15th after a recurrence of Non-Hodgkin's Lymphoma.

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 (starting with my initial diagnosis while I was studying in England).

 - Robert K. Brown
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