January 2004 Archives

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

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

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

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

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

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

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

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

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

Again, it's all relative.

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

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

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

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

I'm breathing.

I am trying to breathe.

Relax, Robert. Just. Just. Relax.

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

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

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

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

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

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

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

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

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

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

Hmm.

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

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

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

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

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

Don't get me wrong.

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

No chemo, no marrow? No, thanks.

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

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

But now?

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

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

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

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

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

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

She smiles.

"What do you mean?"

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

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

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

"So?"

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

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

"So?" Cindy asks again.

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

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

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

"I'm just curious."

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

"What kind of cancer did he have?"

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

"He'd what?

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

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

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

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

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

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

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

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

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

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

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

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

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

"Selfish prick."

"fuck that," I yell back. "I'm going through a lot!"

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

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

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

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

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

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

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

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

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

"Please. Yes, please." I say.

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

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

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

I'm beat.

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

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

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

"Seems pretty quiet," he says.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dear Mr. Brown:

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

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

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

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

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

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

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

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

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

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

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

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

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

Does she even know it's her birthday?

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

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

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

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

"What's the occasion?" I ask.

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

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

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

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

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

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

Not so anymore.

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

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

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

"You okay?" Dad asks.

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

"I'm good, Dad. Thanks."

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It is an unrelenting existence.

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

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

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

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

"What?"

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

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

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

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

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

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

"You're kidding."

She doesn't need to answer.

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

"So what am I getting first?"

"Demoral and Tylenol. Same as usual."

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

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

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

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

Nitey 'nite.

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

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

Polys (neutrophils or granulocytes): The group of white cells that is important to your ability to resist bacterial infection. A "poly" count of less than 1,000 indicates less than normal protection and considerable risk of infection.

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

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

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

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

Things change when your immune system has stopped working.

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

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

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

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

"How's it?" I ask.

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

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

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

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

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

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

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

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

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

Everything gets fuzzy.

I stretch out my legs and stare at the wall.

My face is starting to get numb.

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

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

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

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

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

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

Could be worse.

Man.

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

"Could be better, could be worse."

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

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

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

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

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

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

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

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