On Treating Bone-itis

Last month I was contacted by the National Bone Marrow Registry, which I signed up for in college. A 57-year-old male with cancer (aka “myelofibro myeloid metaplasia” aka “bone-itis”) needed a transplant and I was a likely donor candidate. I went in and submitted some blood for testing and found that, yes, I was a perfect match. A few weeks ago I went in for a physical to clear me for donation, and was scheduled to donate bone marrow in just over two weeks.

Today I was told that the patient was transferred to Hospice and not expected to make it. The donation has been cancelled.

It’s been an extremely emotional time for me. I’ve always heard that donating bone marrow is an extremely painful process. It turns out that there are two ways it can be harvested. One is through surgery, removing the marrow by drilling into the hip, and is quite painful. The other is by donating peripheral blood stem cells. This newer PBSC method involves taking a series of five injections of a drug called Filgrastin which would make my body create extra marrow and release it into the bloodstream. I’d then go in one day and sit in a chair for several hours while they pump out my blood, spin out the marrow in a centrifuge, and pump the plasma back in. Side effects of the drug range from mild discomfort to flu-like symptoms, headache, and bone pain.

It sounded better than surgery, but still wasn’t something I was looking forward to. But there was never a time when I was considering declining to donate marrow. I was given a chance to literally save someone’s life in exchange for a week of possible discomfort. The brochure said that being asked to be a donor can be emotionally trying. It’s certainly taken its toll on me. Reading through the list of possible side effects made my physically ill, and watching the video about the donation didn’t help. I had a feeling of, “why is this happening to me? Why do I have to go through this?” I started to feel better about the process when I went in for the screening physical and was told that most patients just feel a little lousy from the drug, take a steady dose of Tylenol, and then it’s over. Seeing how the procedure worked let me understand it, and being treated like a hero by the x-ray technician was an amazing feeling.

But now it’s all off, and this guy I’ve never met is going to die within two weeks of my being able to give him the marrow that may have saved his life. The registry rep said he likely wasn’t diagnosed in time. All that’s left is for me to say a prayer for him and his family.

HerbEly: Intercessions at Our Son's Wedding

HerbEly: Intercessions at Our Son’s Wedding

This is the reading my dad did at my wedding.

Chip

I chipped a tooth today. Actually I chipped it a few years ago and a piece of popcorn this morning took out the plaster. Now I get to spend the day focusing on not making the problem any worse until my appointment tomorrow morning.

Sleepy Dexterity

I always put two pillowcases on my pillows, one facing one way, the other the other way, so that the zipper is never exposed, nor is any part of the real pillow. Having two cases on there makes me feel like the pillow is protected enough that the fact you can’t wash pillows isn’t a problem.

Saturday morning I woke up and my pillow only had one case on it. Somehow, during my sleep, I managed to pull off one of the pillowcases. The inner one. At some point in the night I was able to pull of only the inner pillow case but leave the outer one on. WTF?

Ch-ch-changes

As you may have noticed, I’m back to using TypePad now. Lots to say about it, but little time at the moment, and a chapter of Harry Potter to finish before video game-related obligations steal away my time.

The first day of work was good I think. I’m not sure I was ready to be thrown into a major life change, but that’s how it happened, prepared or not. There’s a lot to say about that, too, but I’m going to wait until I know more about the job, and probably won’t write about it here, anyway, as per my feeling that it’s prudent to avoid writing about one’s job on the internet. I’ll just say that I think it’s a good step for me in the right direction, but that I’m unused to feeling unsure of myself and as such aren’t dealing with it as well as I’d like to be.

Oh, and it looks like I won’t have steady email access during the day until I get my own desk, so don’t be offended if I don’t reply to you right away. (Unless you think I actually am ignoring you, which of course is possible.)

Gmail Primary

In the interest of saving money I’ve decided to let my .mac account lapse when it expires next month. Please consider my Gmail account to be my primary address for the time being.

I very much prefer client email to web-based, but unless someone wants to throw some venture capital my way (I have tons of ideas) so that I can quit my job and work from home, webmail works better when moving from my work PC to my iMac to Katherine’s PowerBook.

Automating the Mundane

As a kid I’d say, “I’m bored” when I didn’t have anything to do. Now I have stuff to do but am still bored. Am I growing in my needs for stimulation or just getting better at automating the mundane?

The Old Dominion

After much, much deliberation, Katherine and I have decided to stay in the DC area and she has accepted her offer from the Industrial/Organizational Psychology doctoral program at George Mason University.

Marie Ely

I never knew my paternal grandmother. She died at age 32 when my dad was five. A few years ago he started going through and collecting her poetry. She had always wanted to become a published author, but only got one small work out before the leukemia set in. For my dad, reading her poetry has been a way to get to meet the mother he never had a chance to get to know.

Over the past few months I’ve helped him set up a website so that people can read about her. Though I’m sure internet publishing isn’t what she had in mind when she wrote the poems, it has at least let me get to know her. Much of the work is dark, referring to a failed romance, fear of getting involved with my grandfather, and sadness over knowing she was going to die and leave two small children.

The site is up at www.marieely.com. There’s also a collection of black and white photographs and low-res scans of the Sacred Paintings she wrote about, her only published work.

Trust for Museum Exhibitions

I am very proud to announce the launch of my first professional website: The Trust for Museum Exhibitions. The idea was to make something that TME would be able to update themselves without having to pay their unreliable web techs $125/hour to make simple changes to the text.

I didn’t actually redesign the site much from what TME already had, but the whole thing looks cleaner and prettier now. Under the hood it runs very, very light. In fact, the entire site weighs well under 1 meg: over six times smaller than the previous code. The site is run entirely by MovableType using templates for everything so that it can all be edited from within the MT interface rather than needing FTP. It passes most of the U.S. Section 508 accessibility guidelines, making it available to blind and disabled users. The masthead image (thanks Matt Thomas!) uses StopDesign-style image-replacement to make it accessible. Everything is run by one (valid) stylesheet, which ensures that pages display uniformly and allows for easy alteration should TME want different fonts or colors. Almost every page validates as XHTML 1.0 Transitional, with only a few errors on the inner-most pages being due to curly quotes and dashes that got copied in from the old text. With only two exceptions, every page validated on the first try! Once TME starts entering their own text there are sure to be some invalid entities that creep in, but the structure of the site should remain correct.

Thanks to Cyndi for letting me loose on place of e-business.

Antidiluvian

I awoke a bit before five last night to what sounded exactly like a faucet running into a pool of water. My bedroom having a faucet, that seemed wrong. The rainstorm had dropped enough water fast enough that the ground hadn’t soaked anything up, so our basement window wells had filled all the way up — each probably holding well over a dozen gallons of water. Turns out that our windows aren’t water-tight, so leaks around the edges were pouring water onto the floor. I woke Matt up, then went into the main room and discovered inches of water by the window and an already soaked carpet.

This apartment is cheap and convenient to the Metro, but this is now the third flood we’ve had. Annoyed, I decided to take the day off, do some mopping, and get back my lost sleep. Except that our squeegee is very old, so it won’t actually clean the floors. I have everything mostly dry but very dirty. The poor dehumidifier needs a vacation.

(Also the built-in Apple dictionary knows the word “squeegee.”)

Quo Vadimus

I love the fall. I love the changing leaves and the coming of cold (as opposed to winter’s lingering cold). I even love the rain. But the impending arrival of autumn has left another season marker in my head, providing an easy check against where I was a year ago and a year before that. I’m not unhappy about where I am right now, but I know it’s not where I want to be for very long. The problem is, after all this time, I still don’t know where I’m going. Web design looks more and more appealing as an option, but with the forthcoming 1.0 release of the frat page I become less and less happy with my design (and more and more annoyed at IE/Win). Last night my dreams revolved around modifying tags and rebuilding the site. If that sounds boring, it is, and it left me in a very peculiar mood that hasn’t receeded with the morning fog.

Arlingtoniversary

Today marks one year since I moved to the DC area. The next day, as I was still unpacking my toy chest and discovering that I’d have to live without high speed internet for a while, the sniper attacks started. It wasn’t the best welcome for me, nervous about getting a job and about starting my adult life. It was the first time that a current event had directly affected my safety and worried me. Not that I was walking in zigzags and avoiding white vans, but it was scary. Scarier even (for the moment) than sending out resumés.

Mother's Day

I went home this weekend. Katherine came with me and we had a very nice time. I met my Uncle Jerry’s mother who’s 92 years old. 92. Scary.

Every time I go home I rummage through the house and see what I can find. Today I was looking for the comics I read in my youth. I didn’t have many, but I did have the first bunch of issues of X-Men (now called New X-Men, which I still read). No luck finding them this trip though. My mom says that she never threw any of our stuff out (rightly thinking that we’d want it some day). I’m sure that they’re just buried somewhere in my room.

We also took a trip through the school pictures drawer, giving me the oppurtunity to scan a new copy of the best picture I’ve ever taken. I also uncovered this one. Katherine was quite pleased with them both.

That Motel Feel

I downloaded a few songs through iTunes 4 to see how it works. I love it. It feels like in sci-fi where there’s no such thing as tv anymore and everything it integrated into one “net.”

I’m moving at the end of May. I left work early today to look at one place on N. Adams St. that’s under ten minutes’ walk from the Courthouse Metro. The price is right and the location is great, but the place wasn’t all that nice. I’m going to be doing a lot of searching in the next few days. If anyone knows of a listing, please let me know.

Ludicrous Speed!

gasp

Finally, we have DSL. No more dial-up for me, suckers!

I Took a Nap the Other Day

It was a good one, but not the best I’ve had. In my day I’ve napped some epic naps. Some glorious naps. I’m in fact so fond of naps that I think they should always be described using the same words one would use to boast of a victory on a battlefield. Use words like “terrific,” and “monumentous,” and “unprecedented.” Imagine a hardy barbarian sitting in a tavern, recounting how many heads he’d cleaved, how many villages he’d plundered, treasures he’d found. Only about naps instead, and of how many sheep he’d counted, and of how he woke up refreshed but not groggy.

For a second there I was so glad, so proud, to have taken that nap that I wished I was tired right now. Often in life it’s the things that we don’t get very often that we relish the most. After a few weeks with nothing to do, weekends just aren’t that exciting. The principle is that, since we don’t get _ very often, it’s that much better when we have it. We savor it like the moment right after an amazing interception, because half of the event’s splendor is the rarity. There are, of course, many exceptions to this rule. Christmas would be great if it happened every day. Candy is just as tasty even with the Halloween night stomach ache. Masturbation. Ah, sweet, sweet masturbation…

The Nap we can thus see is a magical creature. The nap I took the other day was a Sunday Afternoon Nap. Perhaps you’re familiar with that variety. I love the Sunday Afternoon Nap because it’s what makes Sundays what they are. They’re your real day of rest that, conveniently enough, come right after Saturday which is your day on the move. The Sunday Afternoon Nap happens because one, like a fool, always wakes up too early on Sunday. No matter what time that was, it was too early. So after a few hours of lazing around, you flop down on the couch or back into bed and let sleep, fabulous sleep, take you. The Sunday Afternoon Nap is but one example of the types of naps that happen because they understand perfectly how your day works. But here’s the thing: The Sunday Afternoon Nap is always great, even if you get it every week. In High School, when it wasn’t lacrosse season, I took afterschool naps before starting my homework. They were great. And they were great every single day. The nap has this power to be good every single time as long as you believe in it. Like Tinkerbell (if she were a hooker).

Which brings us to a very important point, as important as not feeding Gremlins after midnight (or giving Scrunchface liquor): naps may not be interrupted. Your nap is a part of you. Stopping it early is like going to the bathroom and then getting up halfway through and leaving - it just ain’t healthy. You know in those sci-fi plots where the person is inside a computer or someone else’s coma or something, and if you wake him up too early his mind will just stay there and he’ll die? Like that - all those stories are just a metaphor for naps. Never, ever, ever wake someone up from a nap unless they’ve asked you to.

Society doesn’t have much place for naps these days. I’m not sorry about that. I’d be very angry if all of America had siestas at 1-3pm and I couldn’t get my Slurpee then if I wanted it. I just find it a little sad that once you get home from work there really isn’t time to fit in a little snooze before dinner. But I guess that’s the price we pay to have 24-hour Slurpee availability and all of the other wonders of living in a superpower. By the time you’ve built your life up and gotten it to a point that you can have a daily nap you’re ready to retire. So damn the old, huh? They say that youth is wasted on the young, right? Well naps are wasted on the old!

All of this just goes to show that life goes steadily downhill after you turn 6. Before that, you can play with toys all you want and you’re required to take a nap every single day in school. And on top of that, you don’t have abstract thinking yet, so anything outside of your field of vision actually just doesn’t exist to you! Sigh.

Just Push Right Through the Flab

I went home Sunday-today. For those of you who don’t know (a big list, I try not to complain too much), I suffer from occasional severe headaches. I’ll not have them for up to periods of months, and then get a headache every day for sometimes weeks at a time. I’ll wake up and be fine but around dinner time feel it coming on. The pain really is very bad, but when you get one every day you learn to live through it and not complain or you’ll end up missing everything that goes on. I’ve also made it a point not to get too desenstitized to pain medication.

This description makes it sound much worse than it really is. I do get the headaches from time to time, but not every day like some kind of chronic problem. My dad has always thought it was a really big deal, but when my physician, eye doctor, and dentist all had no clue why I got them, I just resigned that I’d have to learn to live with them and that was that.

Last week Dad called me to tell me that he had a gift certificate to his chiropractor (he’d suffered an injury doing Tae Kwon Do that left him with tingling nerves) and thought I should go in and see if chiropractive “medicine” could find a cause for my headaches. I went in yesterday to have x-rays taken and it does seem like the vertebrae in my neck are messed up which causes pressure on the nerves which makes the muscles spasm causing (all together now): headaches. So the good news is that after a few visits to an office up here I may be cures of most of my problem. The bad news is that now I have to clean my room to find my insurance policy and will finally have to read it.

But all of this got me thinking. The basis of the Chiropractive Arts is that one’s vertebrae can get out of place and this can cause all sorts of problems, and on top of that if the muscles aren’t strong enought to pull the disc back where it goes they just get used to it being out of place so they resist the chiropractor when he pulls them back to where they go. This means you have to keep going in for awhile until your muscles figure out where your spine’s supposed to be.

So (if anyone’s still reading), is my question: What happens when they get REALLY fat patients? It’s got to be harder to manipulate someone’s spinal column when there’s a few inches of back fat in the way.

Do you think that in chiropractor school they have a class on fatties?

Living a Contradiction

Strange dreams again tonight: very unsettling. Fits my mood these days though. Not that I’m unhappy, I’m just not quite sure where I am. I want a job, but I enjoy not having one. I like the cold weather, but I get annoyed when I have to turn the heat on. And being home these past few days has just reminded me that I don’t really live here anymore and have to face up to the fact that I have to start considering myself to be an adult. But I don’t feel like one, so I’m caught in this battle over wanting to be a real person and have a routine and wanting to just cruise along with no direction. Oh I’ve gone crosseyed thinking about it. Bugger.