1. Introduction

I Had Leukemia, Okay

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I had leukemia, okay. I had it and now I don't and that should be that. Only it's not. It's a memory that won't go away. Not a haunting memory, not a slow motion replay of a rear-end collision where you find yourself clenching your arms against the seat, looking back over your shoulder for the too-fast car that isn't there. No. Leukemia is vague with occasional flashes of coherence. It is a constant hum.

Back in the summer of 1992, I would be sitting on the back porch with Dad and Jane, all of us sharing sections from the thick Sunday paper, arguing over who would get the comics first, when a palpable memory would surprise me. I would not be expecting it, and the memories were still so fresh.

Perhaps one of my legs had fallen asleep, or the coffee had cooled slightly, a tight bitter taste. Something: a glint of sunlight reflecting off of Green Lake down the hill. Anything.

There would be a sudden flash in my brain, telling me that the tingling sensation is exactly the way my legs felt after seven weeks in a hospital bed, emaciated, weak and thin. They throbbed when I tried walking up the stairs at home. That exact sensation would come crashing down on my head: sitting in a comfortable chair on the back porch, warm morning sun, good coffee, all of that, but my legs are weak and tired and in so much fucking pain.

I'd stare through the newspaper.

And then I'd be tasting the chemo again, tasting it bad like it was during the first round. Or maybe I'd feel a sudden rush, a hot spurt in my veins of something, I don't know what or why, and I'd be flat on my back in a subterranean hospital room, one of many faceless nurses standing at my side. She is pushing iodine into my bloodstream -- fuck! Why the fuck is it so hot all of a sudden? -- so the images from the CAT scan will be clearer. fucking mystery fevers out of nowhere again, again, only this time we're pretty sure they're coming from somewhere inside my skull.

These had been real. It's not fair to call them memories. It'd be an early summer morning in 1992, pretty much two full years since I'd last been in the hospital, but the colors would be so clear, the smells, the sounds, that nasty metallic taste, the quiet fucking tears that need to be blinked away before Dad or Jane might notice.

The constant hum of leukemia would transform into a brief shout.

Pay attention, it says. Do not forget me. I can make your body remember, even if your mind wants to forget.

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'm sorry," she would say. "It still surprises me how quickly they come. Just when I think I have it under control..."

"I'm sorry..."

"Don't be sorry, Robert. It's me."

Her memories, I think, are much more vivid than mine. Or perhaps they are simply that much more painful. More painful to be on the outside looking in, unable to do anything but worry, unable to dab peroxide on a skinned knee. Cancer is one thing that a mother cannot kiss and make better.

But not for lack of trying.

When I Was In The Hospital

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When I was in the hospital, both sets of parents encouraged me to take notes, keep a journal, anything to help me to be able to remember what we were going through. There were so many free hours, so many days where I did nothing but move from my bed to my bathroom and back again. Just jot down some details, they suggested.

My sister's best friend had given me a Walkman during my first month. It was the kind that you could use to record stuff into.

"I know you've been tired," she said. "But you can still speak into this if you want. You know. To preserve the memories."

Another friend -- a long-time friend and former secretary of my mother's -- had also gone shopping. Everybody, it seemed, was on the same page. She'd picked out a hard cover notebook with a marbled blue cover and clean blank pages for writing, and a new Waterman (ball point, not fountain) for writing.

I appreciated all of it. Really. But I was always so damn tired.

"Besides," I told them, individually, collectively, "How could I possibly forget? This is the sort of experience that you just don't forget."

"No, no," they would respond. "That's not what we meant. Of course you'll never forget that you had leukemia. But you might just maybe forget the name of one particular doctor. Not all of them, but maybe just one or two. Or the man who worked in Food Services, the one with the vast personal library of movies, classics, bringing a new one to you every day with your lunch. You might forget what he looks like, his name, the different movies he'd brought.

"Even the way your chest felt, remember, when it was swollen with blood? These things. These specific things are the kinds of details you are likely to forget."

"Not to worry," I'd told them. I was twenty, twenty-one years old, as confident as you can be when you're flat on your back in a hospital bed.

"Don't worry," I'd said. "I'll remember everything."

Wrong.

I remember that I survived. I remember only a few of the most lucid dreams. Names have slowly disappeared behind a dark wall of fog. Specifics, for the most part, elude me. Or maybe I just haven't made sufficient attempts to dredge my memory yet.

One of my first doctors -- tall, young, square-jawed and rugged attractive -- told my mother that some of the drugs would make me forget.

"They are primarily to fight infection," he'd said. "Understand, though, that in addition to helping his body fight infections, they will also affect his memory. And it's not such a bad trade-off. There are some things that are better forgotten."

This will be my attempt to remember. I will write. I will chase my memories and capture them on paper. Memories like Jackson Pollack. A burst of color there, a dribble of paint, more splashes in the corner because that blue reminds me of this blue, and suddenly it is a complete picture. Rarely do my memories progress in linear fashion; I doubt that this will either. For that I ask your patience.

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A Few Notes

rkb in 1990
2010 marks my twentieth year in remission from AML. To celebrate, I will be training for and running two marathons with Team in Training: Twin Cities on October 3rd, and Dublin, Ireland on October 25th.

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 (or through the site archives).

But now I will also be writing about my training and fundraising goals, progress, as well as other thoughts, feelings, and experiences along the way for this milestone anniversary.

 - Robert K. Brown
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Table of Contents

Recent Comments

  • RKB: Thanks, Melissa. I thought this was a pretty compelling ad. read more
  • Melissa A: Wow! Pretty powerful Robert. This really resonates with what you read more
  • Melissa A: $10K! GREAT JOB with your follow-up and on hitting this read more
  • RKB: Thanks, Tina. I do love this quote -- a nice read more
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  • Katie Meister: Totally Amazing! I cannot seem to get my mind focused read more
  • Tina Stello: Robert, what a great quote! I work with Melissa and read more
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