leukemiasurvivor.com

This is an experimental writing tool. Blogging is an excellent way to write a little bit, every day. That's all fine and good, except that there's something that I've been meaning to write about for the better part of ten years now. So instead of finding links (and interesting articles, and humorous anecdotes) to fill my calendar day after day, I will try to piece together my own history with leukemia.

As much as I want the story to be linear -- and as much as I realize that the finished product most likely will follow in chronological order -- I can't command my mind to remember it the way I want to write it.

So I will bite off a little bit here and a little bit there. I will categorize the memories. That's what matters. Because I expect to be writing exclusively about the past, the current calendar seems less than useful. I may change my mind about this, the further I get into documenting my history. But for now, everything goes to a category. The home page will still retain recent work, but archived "posts" all belong to a greater whole.

For that matter, I reserve the right to edit any post, for any reason. I will be using a blogging tool at the same time that I fly against some blogging "conventions." No calendar, for example, and when you view my "categories" (i.e. the Table of Contents), the display order is reversed, so it should read the way the story unfolded.

'Nuff said. Time to build some back story.

There is much work to be done over the next days and weeks. Templates to update, stylesheets to improve, archiving and indexing and all sorts of stuff under the hood to make this a more presentable work in progress.

But more importantly: a return to the story. I've added 23 entries here, all at the end of July, 2002. I've added over 1,200 entries somewhere else. Not exactly what I'd called a good balance.

And so while there will be less and less over there, expect more and more about what happened to me during the spring and summer of 1990, and how that has continued to spill over into the rest of my life.

The vast majority of this was written during one furious lunch break in the summer of 1992, after I'd graduated from Carleton but still didn't have any idea what I wanted to "do," other than remember everything I possibly could about the summer of 1990. This outline doesn't include anything past January of 1991, but that's all dénoument anyway: married with children, two marathons with Team In Training (1998 and 2000), belated attempts to give back to those who gave so much to me, a challenge to myself to endure something that wasn't forced upon me.

This is my guide, my reference. Sometimes I wish there were more details, here, that I'd been more diligent about using the laptop Dad and Jane bought for my 21st birthday. I mean, using it for something other than playing Empire, or Chessmaster, that is, writing down impressions and names and thoughts hopes dreams fears.

But at the same time, I am so glad to have anything from my own personal wayback machine. If you don't want to wait for me to finish fleshing out the details -- filling in the backstory on all the first names (and gates, linda, her last name we always used first), single words exploding into pages -- of if you'd just like a quick overview of where I'm going with this site, then you can simply read through the extremely abridged outline version.

Messing around with templates and stylesheets and photographs from a recent family vacation this morning turned into a new look and feel around here. A little brighter. A little less generic.

Still need to figure out a better long-term solution to a few clunky navigation problems, but we'll get there.

One more technical update before we're ready to commence storytelling again. The Table of Contents is mostly complete, and when I get around to filling in the later sections, links will become activated. It's also in chronological order, now, instead of alphabetical. Makes much more sense to read the whole thing from beginning to end when the different sections are in the right order.

A few other things, here and there, tweaking templates to make sure that everything on the back pages appears in the order that I want it to. The main page will continue to be for most recently added content. Everything else, though (I hope) should facilitate being able to read through this as a structured narrative.

Not that everything will necessarily be in exact chronological order. No, no. That would be too easy. But at least if the story bounces back and forth between the past and present, it will be by design, not chance.

Written last year, but still applicable today. Two big reasons to be thankful.

It was probably Dr. Collins who first brought the possibility to my attention. My chemotherapy would be very strong. Lots of nasty side effects, some short-term, some, maybe, long-term. And this doesn't even include the chance that I might have needed a bone marrow transplant. That process is much more involved, with the stated goal of "obliterating the marrow function."

I don't think it had even been two weeks since my diagnosis, and I'd pretty much focused on what I'd considered a long-term goal: get healthy enough to return to school in the fall. Six months away was about as far down the road as I wanted to plan.

Dr. Collins, on the other hand, was definitely thinking long-term. Before the chemicals started slowly dripping into my Hickman catheter, she asked if I wanted to, umm, make a donation. The phrase "put some sperm on ice" may have entered the conversation. She didn't know. She couldn't say for certain, at my age, with the chemo, with other drugs meant to mitigate the side-effects of the chemo, well, she simply could not say one way or another if I'd ever be able to have children.

I was twenty years old. A month earlier, the most important decision I needed to make was whether or not I wanted to listen to Kate Bush or Neneh Cherry while I played pool with "da boys," whether I would be drinking Beck's or Guiness. The thought of one day having children had never entered the equation. There wasn't much time to decide, and my future vision was still pretty myopic.

I did not, shall we say, make any deposits in the spring of 1990.

Consider me absolutely, eternally, unbelievably thankful for the way things have turned out so far, all things considered.

It's simply easier to tell my story in rough chronological order. As I work on adding scenes I'm finding that they're not always confined to a single entry. Bone marrow aspirate, followed by results of the test, followed by reacting to the results. These kinds of entries really make the most sense when read in the order I've written them, not the blog-standard reverse-chronological order. The format gets in the way of the story-telling. So I'm changing the format.

My most recent adjustments, hopefully, will address this issue for the final time. Every page on this site -- including the main index -- will be a string of entries appearing in the order they were meant to be read. In the event that you are a regular, or semi, or even occasional reader of this site, I've tried to make things a bit easier by listing my links to the 12 most recent entries as dates, with excerpts provided when you hover over the link.

In other words, new updates will appear at the bottom of the page, not the top, but you can quickly get to the newest entries by scanning the dates in the sidebar. Twelve entries also makes more aesthetic sense than, say, ten: no matter what size you scale your font, the dates appear in an evenly justified table, either 4x3, 3x4, or 2x6.

One last thing, very minor, that probably wouldn't be noticed unless you've recently been using a very old, very cramped monitor: all pages also now fit cleanly within the boundaries of the browser window when viewed at an 800x600 resolution.

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.

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.

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.