3. Induction

Survival Rates

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

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-fucker.

Chemotherapy, Briefly

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 shit out of it, and trust that your body is strong enough to get back up off the mat when it's all 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

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 some shit 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 fucking 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 bullshit.

    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 piece of shit. 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

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

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

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

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

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

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

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?

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

"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?

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.

And fuck!

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 fucking shit!

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 fucking 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

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 the 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

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

"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

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

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.