Update

So the words aren't coming at nearly the pace I'd like. Between work, family time, and at least two or three other really excellent excuses, my self-imposed deadline to finish the narrative is looking all but impossible at this point. Labor Day? What the heck was I thinking? It's not as if I can just dip into a magic memory jar and suddenly these experiences write themselves onto the page. It takes time to go back, to think, to remember, to put myself back into the first person.

Still plugging away. Still working to finish the story. It's just moving along at a somewhat slower clip than I'd hoped at the beginning of summer.

Playlist

I've got a playlist that helps me while I write. Currently 50 songs, give or take, most of which take me back to the late eighties and early nineties. Not because they were necessarily written then, or were even very popular at the time, but because they’re songs that were part of my college years. Some I've called out in the narrative because they are so visceral, so intrinsically tied to my experience in 1990. Others I'll write about here.

In no particular order, this first song to share -- Patti Smith's Piss Factory -- came from a compilation album, Just Say Yesterday: Volume VI of Just Say Yes. It’s one of several similar Sire Records compilations I'd borrowed from Aaron when we were roommates together at Carleton, during both of my senior years.

Just absolutely love this song. And thanks to YouTube, I never knew that this was the "B" side to her cover of Hey Joe (which is another song on my playlist, the Jimi Hendrix original, for a couple of different reasons).

Goal

I’ve had several very good conversations over the course of the past couple of weeks or so. Actually, they probably go all the way back to the end of April. Talking about writing, about editing, about what it takes to bring a book to market, any book, really, but more specifically a memoir about a twenty-year old college student who is diagnosed with leukemia.

No great surprise: the consistent advice I heard through all of those discussions was to finish the book.

Simple.

I don’t know exactly how far away I am from finishing the narrative. Feels like maybe halfway, maybe a little more. If I trust that I’ll want to do some extensive trimming of what I’ve already written, then I’m sitting at somewhere in the vicinity of 50,000 words. So let’s say that 40,000 more gets me to where I want to be.

40,000 words.

Between now and the end of summer is just about 12 weeks. 40k/12 = 3,333 words/week. Divide that by six days of writing each week gets me to 555 words per day.

After crunching the numbers, I realize that this is absolutely within reach. Just this past week (when I wasn’t even thinking about a word count, or goals, or anything other than trying to write) I’ve had sessions of 1100, 650, 680, and 560 words. It’ll take some discipline, to be sure, to carve out time to write every day. But it doesn’t take much to get to 500. Heck, even though it won’t count toward my daily total, this post is already getting close to 300.

So that’s the goal: finish the manuscript before Labor Day.

Timeline

I decided to root though my old manila folders tonight, tucked away in bottom right drawer of the credenza upstairs. My 16-month wall calendar from 1989-1990 is there, too. I wanted to write down specifics. I’m coming to parts of the narrative where I don’t remember exactly when certain things happened, even though I have a pretty good feel for the times and dates, and I want to make sure I’m accurate.

Ended up writing out three different timelines. Variations on a theme: one with precise dates and milestones, from 02/19/1990 all the way through my last (non-chemo-related) visit to the hospital on 09/25/1990.

Another with the same dates but instead of milestones I wrote up date ranges.

Finally, the last timeline I put together is one I’m copying below. Took the same date ranges but instead of showing dates I wanted to simply show how long the main stretches of my spring and summer were. After fleshing out some additional details, I think there’s an interesting story quietly hidden within the numbers.

  • 7 weeks in the hospital – “Round One”
    • 1 week of chemotherapy (7 days daunorubicin with 3 days Ara-C)
    • 1 week of observation
    • 1 week of chemotherapy (3 days Ara-C with 7 days daunorubicin)
    • 4 weeks of recovery
  • 3 weeks at home
  • 4 weeks in the hospital - “Round Two”
    • 1 week of chemotherapy (7 days daunorubicin with 3 days Ara-C)
    • 3 weeks of recovery
  • 4 weeks at home
  • 6 weeks in the hospital - “Round Three”
    • 1 week of chemotherapy (high-dose Ara-C)
    • 5 weeks of recovery

In other words, my first and last rounds of chemotherapy were not without their fair share of complications.

A Change of Seasons

I was doing some writing tonight – something I’ve been tackling with greater frequency over the past week or so, trying for at least 30 minutes a night but usually ending up closer to 60 minutes every-other-night. I’m also going to keep track of word count, not just minutes, to make sure I continue to move the story forward instead of making my fortieth revision of the same sentence.

In any event, while going back to double-check that I remembered the name of the exit to the UWMC from Hwy 520, I decided to zoom into Google’s street view to see if I could virtually relive some of the scene I’d just written, where mom drives me back to the hospital to begin my (scheduled) second round of chemotherapy.

I initially thought the street scenes were pretty gloomy. Typically dark and overcast and stereotypically Seattle.

on montlake blvd

But I remembered that day being a beautifully sunny spring day, flowers blooming, bright sunshine. Imagine my surprise, then, when I clicked ahead to the next intersection.

still on montlake

Funny vagaries of Internet maps. Would that the seasons changed as quickly as walking across the street.

Much Better

Templates have been cleaned up, finally, and all that was broken is now unbroken. I'm going to need to resist the temptation to tweak the look and feel of the site too much -- time is better spent working on other things.

Time, Flying

It has been brought to my attention, recently, that it's probably not the best thing to have a five year gap on a website chronicling my adventures with leukemia. Couple that with the fact that comments have been broken for I-don't-know-how-many-years and it might have appeared that the site was dead and unresponsive because, well, I was, too.

Not at all true. In fact, within the past few months, I've celebrated nineteen years in remission, as well as my fortieth birthday. I am returning my focus and attention here after a very long absence.

Unfortunately, while attempting to clean things up a bit, a few things were inadvertently broken along the way. I apologize for the mess. Should be able to muddle through the updated MT templates over the next couple of weeks and put together a serviceable design.

Back Burner

Wow. It's been months since I've written anything here. Out of sight, out of mind, I suppose.

This is a brief note. Funny, in hindsight, given some of the other more recent entries about cleaning up and updating and whatnot. I've finally implemented a more permanent solution to the comment spam that's been the scourge of a neglected site, so I trust that things will remain fairly stable here for awhile.

But the reality is that telling the remainder of this story needs to be a full-time commitment, and that kind of time is a scarce commodity for the forseeable future.

My target date for completion has simply been pushed much farther into the future. At some point during the next several years, I hope to be able to carve out a significant chunk of time to be able to dedicate to the retelling (reliving?) of my leukemia experience.

I'm a sucker for milestones: in March of 2010, I will not only be 40 years old, but I'll also have been in remission for 20 years. Half my life. So that's the target. About five and a half years away.

Back To The Beginning

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Wish I could figure out how to make the MT templates do what I want them to do. Even though I'm not advancing the story, I am in the midst of improving it. Filling in details, adding a little across-the-board spit and shine.

For example, here is a paragraph from my first entry that I'd never edited beyond cursory first draft changes:

Then I will be talking with Mom. We are standing in the kitchen at the new house. She is writing a grocery list. I'm swishing a glass of ice water around, listening to the ice clank against the sides, asking her about insurance. We talk about this fairly often. It concerns me, my ability to find insurance with such an ominous "pre-existing condition." I'm not even paying much attention to what I'm saying, just random questions for her to field. Suddenly she'll start crying. Real tears, running fast, and they make me uncomfortable.
I've been making wholesale changes throughout, starting from these very early words. This section now reads as follows:
Maybe it's 1992; I would be talking with Mom. We'd stand in the open kitchen at the new house, the cleaner, newer, more spacious house that she and Paul had moved into after Laura and I had gone away to our respective colleges. Mom is working on a grocery list, standing in front of the refrigerator with a small notepad, opening and closing cupboards almost at random. I'd be leaning up against the corner by the double sinks, swishing a glass of water around, listening to the ice clank against the sides, asking her what she thinks about insurance. We've talked about this fairly often since graduation: it concerns me, my inability to find insurance with such an ominous pre-existing condition. COBRA won't last forever. What am I supposed to do when I finally get a real job?

I'm not even paying much attention to what I'm saying, just random questions for her to field. She's The Mom, the solid, strong business woman. She knows these things. But suddenly she'd start crying. Real tears, running fast, and they would make me uncomfortable.

I've got a ton of pages marked up. Slowly working my way through them all, currently getting ready to make changes to the scene where I'm third-person again, stupidly staring at a bloody toilet bowl.

There's much more to come. Much more new prose to follow, even though it won't be in the form of any brand new entries. I'll keep trying to get these templates to work the way I'd like, to better highlight new writing in old entries. Until then, the table of contents on the left, or the more printer-friendly version of the story remain the best ways to keep up-to-date.

Update

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Just a quick note to address the recent lack of forward progress: I've actually been spending a great deal of time reviewing everything I've written thus far. This has involved a lot of pen and paper, scratching out words, trying to cram new ideas into the margins, circling headers and whatnot. A lot of behind-the-scenes improvements, I hope.

At the same time, I will need to make some template modifications (again). After I finish with the manual revisions, I will want to implement the changes. I'd like for those changes to be reflected as "recent updates" without necessarily changing their intended chronological order. I'll try to figure that part out later.

But for now, I'm keeping busy with editing. For any regular (or even semi-regular) readers out there, fear not. I am committed to finishing this story.

Baby Steps

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There is a young man. His thin, weak legs struggle to carry him up a staircase. He has been in a hospital bed. He has been lying in a hospital bed for so many days, weeks, months, that his legs are emaciated. Bony arms poke out from underneath a plain white tee-shirt, matching the twigs he's using to walk. The chemotherapy had done this to him. The hospital had made him better, but in the process, it had taken away his strength.

But he is home now.

The house has two levels. The young man has grown up in this house, has lived there all of his life. The front door opens to a splitting staircase. One set of stairs, eight, maybe ten steps, lined by a wrought iron rail, will take him from the landing up to the living room, kitchen, bedrooms. The other stairs, lined by a wooden rail, lead down to the garage and the unfinished basement.

When he was younger, maybe a handful of years ago, lean times, his mother and sister had learned to make do with less money. His mother would order a cord of cut wood -- or maybe half, depending on how long the wood from the previous year had lasted. They would see how long they could go without ever turning on the heat. A contest. The wood was stacked outside, along the west side of the house, protected from the Seattle winter by a thick green tarp, held down at the edges by rocks pulled from the terraced front yard. Once a week, at least, he would push a full wheelbarrow through the garage, down through the narrow basement hallway, creating a second, smaller stack in the southeast corner of the house, piled on the cool concrete.

He had fashioned a work area in this corner. He cut the firewood. He broke apart the larger pieces so they'd fit into the fireplace. With the larger pieces, he'd start the maul into the top, tapping it down, then swinging the wood and the ax together in one wide sweep, splitting the wood against the hard concrete floor of the basement. There was a smaller hand axe that he'd use to break the smaller pieces into even smaller pieces, and then pieces smaller still. His hands would blister. He would sweat. More often than not there would also be a battered boom box plugged into one of the outlets in the corner, music for the workout, tempo for the chopping.

His arms were never very large, but they were strong. His legs, too, from all the wheeling and lifting and squatting and bracing for the wide swing of the maul. It wasn't so many years ago -- wasn't even a year ago -- that he would bound up and down these steps two or three at a time.

But now.

Now his legs have dwindled away to almost nothing, and there are eight, maybe ten steps in front of him. He needs to hold onto the rail. He pauses at the fourth step, surprised that neither his lungs nor his thighs are able to move him any farther than this. His stepfather is at his side, offering assistance. The young man shakes his head.

No, no.

This is his home. He will do this thing. He has been so dependent on so many people for so long already. These eight steps. Ten steps. A hundred? He will do these on his own.

Finally

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

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

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

He didn't budge.

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

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

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

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

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

I'm golden.

It's April 23rd, 1990, exactly one week before my twenty-first birthday, and I'm finally going home.

Except For One

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

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

"Well, you see," he says.

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

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

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

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

Uh-oh.

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

Dammit.

"Which one?" I ask.

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

"Potassium," he says.

"Potassium."

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

"Potassium," I say again.

He nods.

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

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

"We do."

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

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

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

Does A Body Good

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

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

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

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

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

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

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

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

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

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

"I'll get it," Dad says.

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

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

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

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

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

It's no use.

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

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

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

Hot Dish

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

More on that later.

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

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

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

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

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

Gimme Some Grub

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

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

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

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

But now I'm ready for some real food.

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

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

Almost Home

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

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

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

"How long?" I ask.

"Before you're back home?"

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

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

"Can you guess?"

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

Cindy smiles.

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

"Next week?"

Now she laughs.

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

It's Just A Blip

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

"Are you sure?" I ask.

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

"How many?"

"Twelve."

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

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

"Are you sure?"

"Very sure."

"Could it be a mistake?"

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

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

"This is good, right?"

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

They're Back!

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

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

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

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

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

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

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

Drifting

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

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

I am sleepy. Sleepy sleep tempts me.

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

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

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

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

PSA

Some words from my mom, helping jog my memory about who helped donate blood and platelets during the early days:

You probably don't know this but while (Laura and I donated platelets) Paul donated whole blood to the blood bank in your name to replenish what you used of their supply. He did not match you so couldn't give directly to you but gave to the blood bank as many times a month as they allowed for the entire time you were in the hospital I think it was a couple of times a month.

Also I got people I worked with to donate whole blood to the blood bank. In fact I got the Blood Bank to come out to Boeing as a special trip to get blood from people in your name. A couple of my work mates signed up for donating platelets and also for being a bone marrow donor. When I retired in 1996 at my retirement party one of these ladies told me she was still donating platelets and is still in the bone marrow registry.

All of this because of you. It's a wonderful world isn't it. There really are a lot of nice people in this world.

Indeed. Here's more on how to potentially donate bone marrow, by first registering with the National Marrow Donor Program, which requires little more than a blood sample and some paperwork, along with some myths about the process.

Also, if you're able to donate blood, or even platelets, I can guarantee you that there's a leukemia patient who would welcome both.

Easter Weekend

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

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

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

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

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

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

"Careful," Cindy says.

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

"There's something inside," she says.

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

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

She's written the same thing inside the card.

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

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

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

"I won't."

She hugs me quickly. "Okay, then."

Foot In Mouth Disease

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

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

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

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

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

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

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

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

Hold it.

Hold everything.

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

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

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

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

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

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

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

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

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

Deeper and Deeper

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

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

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

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

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

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

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

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

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

Pull!

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

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

One ... two ... three.

Yank!

Done. Goodbye easy access to major arteries.

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

I don't care much about needles anymore.

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

rkb in 1990

A Few Notes

The bulk of this story takes place between March and September, 1990, and has been written in bits and pieces, fits and starts, over the years since then. Be forewarned that there's more than a little profanity. Some of this stuff still makes me very angry. I may try to work on a "PG" version at some point, but for now I'll let the chips fall where they may. One final note: this is as mostly true a story as more than a decade of hindsight will allow. I can't say that everything is 100% accurate, but it's as close as I can get. Robert K. Brown

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