April 2004 Archives

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

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

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

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

He didn't budge.

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

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

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

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

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

I'm golden.

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

Except For One

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

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

"Well, you see," he says.

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

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

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

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

Uh-oh.

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

Dammit.

"Which one?" I ask.

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

"Potassium," he says.

"Potassium."

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

"Potassium," I say again.

He nods.

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

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

"We do."

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

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

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

Does A Body Good

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

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

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

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

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

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

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

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

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

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

"I'll get it," Dad says.

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

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

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

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

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

It's no use.

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

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

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

Hot Dish

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

More on that later.

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

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

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

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

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

Gimme Some Grub

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

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

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

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

But now I'm ready for some real food.

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

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

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A Few Notes

robert (now and then)
(hover to see RKB in 1990)
After running two marathons in October 2010 with Team in Training, I've decided to "slack off" with just the one marathon in 2011.

This year will be in memory of Siona Shah, an amazing young girl who spent the final third of her too-short life battling leukemia with courage, grace, humility, and smiles.

It will also be in memory of my step-grandmother, Ruth, who passed away on June 15th after a recurrence of Non-Hodgkin's Lymphoma.

I'd originally started using this site to tell my story -- roughly eight months of treatment in 1990, as well as the impact leukemia had on me in the years that followed. Much of that story is still available through the "Table of Contents" below (starting with my initial diagnosis while I was studying in England).

 - Robert K. Brown
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