December 2003 Archives

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."

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.

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.

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."

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.

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."

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.

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?

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.

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

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.

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.

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.

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.

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.

It's mid-summer, between my second and third rounds of chemotherapy. I've been working out. Riding my bike, running, doing push-ups and sit-ups like crazy, creating a makeshift gym in our living room after everybody's gone to sleep. I stay up late, watching TV, doing concentration curls and triceps extensions and shoulder shrugs. Then I tell myself to drop and give me twenty, gritting my teeth, elbows wobbling, swearing. Screw you, cancer, I say. You're not going to win.

Scott and I play fungo at Lindbergh. The wooden bat is the best, because it's more realistic, the crack of the bat. One of us stands at home plate, a half-dozen baseballs scattered around the backstop behind us. The other is in right-center, where the fence is closer. We try to knock it over. We try to lob the pitch up, then grip the bat with both hands, foot up, crack. It's best if it's not a ground ball. You want the hard drive to right-center. You want to make Scott run, to pedal backwards to the warning track and watch the ball sail over the fence, bounce hard and high on the road just beyond, then scatter into the woods to be lost forever. It's worth buying a new ball at Toys-R-Us if you can hit the home run with the wooden bat.

The aluminum bat travels with us in the trunk of Scott's car, and we even bring it out with us when we hit balls and shag flys on sunny summer days. But it's a lot easier to carry the fence when you're using aluminum, and, besides, it pings. A ping is not the crack of the bat.

When we're not shagging fly balls at the high school baseball field, then we're smacking golf balls into houses when we mean to hit fairways. Pitching and putting, spending hours in the sun. Or we're playing hoops at the courts near Tiffany Park, across the street from where Rico used to live. Scott's never afraid to put his body into it, under the hoop, banging me out of the way to get his own rebounds. He always kicks my ass at basketball.

So we play tennis. There are a couple of courts at Coulon Park. I try to make him run. I'm this lean, mean, can't hit a backhand machine, trying to speed my way to victory. They're crazy gorgeous, these summer days.

Mom worries that I might pull out my Hickman. She tells me to just take it easy. I tell her that I've had months of taking it easy, and that I need to be stronger, still, for the third round that's yet to come. I need all my strength, I tell her.

And so my tennis racket (or the golf club, or the bowling ball, or the Frisbee) won't catch the two ports dangling from my right chest, I tape them to my stomach with strips of white tape. When I'm wearing a tank top, you can't even tell it's there. I don't take my shirt off, even at Coulon, with the water so cool and inviting. I'll wear a white tank top with my blue Carleton shorts. It'll be hot, but I don't care. It's just so great to be outside, out of bed, getting stronger every day.

I'm walking back to my truck. Coulon was packed earlier, and I had to park half a mile away, across the train tracks, along the hill near what used to be an old Boeing parking lot. Everybody is streaming away from the park. The sun is fading. We need to get cleaned up. We need to get showered and dressed and ready for whatever adventure the evening will bring us.

This time it's a guy in a car. Just like before, it's absolutely the last thing I'm expecting at that moment. He's in a black Civic, stopped at a park sign, four windows and a sun roof wide open, base track thumping low over unintelligible lyrics.

"Hey!" he yells. He sticks his head out the window. He's driving away, now, up the hill in front of me. Clutch all the way down, gas all the way down, rev that engine. "Go back to Idaho, you skinhead bastard!"

The car jerks forward when he lets the clutch out. Tires squeal. Instant acceleration. He's gone.

The first time it happened was at Southcenter, just bumming around the mall, shopping with Mom and Laura. My counts hadn't returned completely, and my legs were still scrawny and emaciated, but it felt so good to be somewhere else. Anywhere else.

We'd split up. I couldn't keep up with their pace, and wasn't much interested in the shops they'd planned on hitting. We'd agreed to meet at the recently renovated food court. You go that way, I'll meander this way (maybe stopping to rest at a bench every hundred yards or so). No, no. I'll be fine. You go on ahead and I'll meet you there.

I've got to admit that I didn't have much swagger. I wasn't so much angry as I was still pretty drained. But I was trying to be observant, trying to pay attention to my surroundings. This was practically my back yard growing up, this mall, and it was entirely possible that I might bump into somebody from high school, or even grade school, and find myself trying to explain my appearances. I hadn't yet learned to lie about the hairless head, the scrawny pipes poking out from underneath whatever loose white tee-shirt I'd thrown on that morning, and I dreaded the questions, the pitying looks, the awkward silence that stretched as old acquaintances tried to figure out polite ways to end the conversation and move on.

"What?" I ask. Two girls have just walked past me. One is brunette, the other blond, well-dressed, each holding bags from Nordstrom's and The Gap. They're about my age. They might be even be former classmates. Maybe friends of friends who know me by reputation.

They'd said something about me as they passed by. I couldn't really tell, because I'm too busy being observant and paying attention, but they definitely said something.

They ignore me at first, so I say turn and follow them for a few steps.

"I'm sorry. Did you say something?"

They might be cute. I'm thinking that they might possibly be cute, and maybe former classmates or something, and I don't really have to get into a long explanation about the hair and the skinny arms or anything. They could just get all doe-eyed and say wow, you look, you know, really great, and I'll be all shucks and thanks and then we'll sit down together at Red Robin and talk about old times.

They turn on their tip-toes. It's weird. Kind of an outside in thing, timed perfectly, both pivoting at the same time, almost brushing shoulders as they stop and look back at me. Like something they've practiced. Like something they've totally done, like, a million times before.

The brunette speaks up. Her face is icy scorn.

"You heard me," she says.

"No, really. I ... "

"You people make me sick," she says. "effing skinhead. Why don't you just go die somewhere?"

They turn again -- toes, timing, everything -- and casually walk away. Heads together, giggling, laughing. One last look back at me, the blond this time, slowly mouthing two words. She enunciates her silence, making sure that I'm able to read her lips: eff ing skin head.