Wednesday, 5/14/2008: Poke, Poke, Poke

The narrative is going to jump around a bit here, for which I apologize. I’m going to fill in the events of the weekend and the days following as soon as possible, but for now it’s more important to keep everyone as up-to-date as I can.

The bottom line from last week’s CT scans and MRIs was simple, if incomplete: there’s a mass in the left temporal lobe of my brain that doesn’t belong there. Odds are that it’s some kind of tumor. One possibility is that it’s an oligodendroglioma. This would be good news, because oligodendrogliomas tend to feature a chromosome deletion that renders them particularly vulnerable to chemotherapy. Another possibility is that it’s an astrocytoma, in which case prospects are not as good.

(Have I mentioned lately how demented it feels to talk about all of this when I feel as fine as I do? It does. Thank you. Moving on…)

Having reached the limits of what could be determined using non-invasive scanning, the next step was to take a small biopsy of the mass to determine its characteristics; that’s what happened yesterday. I was scheduled as an “add-on” at Stanford, which basically meant waiting by the phone for the word to be given. When it was, and sooner than expected, we headed north in my father’s rented car.

The first order of business, once there, was another MRI, this time with little saline-filled discs affixed to various points on my skull as reference points. Then to pre-op, where I changed into the airy gown and met with various members of my “team”: anesthesiologists, nurses, interns, etc. Everyone was incredibly, unfailingly, courteous and a pleasure to deal with.

With the preliminaries out of the way and a quick wave goodbye to my parents, I was wheeled off to the operating room. I was transferred from the gurney to the table, had a second IV line started in my forearm, caught a glimpse of what I presume to be my own skull-content on an overhead wide-screen monitor, and then fell prey to anesthesia’s usual sneakiness.

I awoke a couple of hours later, around 3:00 pm or so, being wheeled past my parents and into a recovery room. At that point there wasn’t much to do besides wait to come back to myself. If I understand correctly, a “frozen section” was performed almost immediately on part of the sample, and the very preliminary results suggest oligodendroglioma. However, there is more, and more detailed, analysis, particularly on the chromosomal level, remaining to be done: those results should filter in in the next day or two.

At any rate, because my surgery had taken place early enough in the day, I got to go home rather than spend the night in a hospital bed, which was a definite plus. I passed on the offer of a wheelchair to take me to the door — I’ve never quite seen the point, since you have to start walking sometime — and instead made my way out under my own power, with a parent on either side.

I slept surprisingly well. The hole in my skull hurts remarkably little, and in fact the biggest impediment to sleep turned out to be the fact that the anesthesia drugs seem to shrink your bladder to the size of a grape. You get up thinking you’re about to unleash Niagara, pad over to the toilet, and then… nothing. Or at least nothing epic. Dribble, dribble, dribble, and back to bed. Lather, rinse, repeat. So it goes.

Anyway, I’m up now, and likely to stay that way for a little while. There’s no further surgery scheduled at the moment; for now we wait for the biopsy analysis results to arrive. Aside from a little residual soreness at the point of incision, and the fact that the roof of my mouth feels slightly sandblasted, presumably as a result of intubation, I feel pretty good. The day is supposed to get blisteringly hot, so I think I’ll go for a walk with my mom before temperatures get too far out of hand.

Friday: The Out-Of-Towners

I don’t remember exactly what time the phone rang, or who reached me first, but the message was from my parents, in tandem, and it was simple: “We decided, individually, to screw waiting. We’re coming out there. Deal with it.”

There are times when you don’t realize how much you appreciate having your wishes disregarded until it happens. This was one of them.

Mom and dad would not be arriving until the early evening; my plans for the day were otherwise few. Rob and Frank met me for lunch at the Falafel Drive-In, a San Jose fixture. This was, by accident rather than brilliant plan, conveniently close to O’Connor, which allowed me to swing by and pick up my imagery CD-R immediately after eating.

Once home, there was not much to do but wait, write, answer e-mail, and fiddle with the imagery. The scan results are all in a format known as DICOM, short for Digital Imagery and COmmunications in Medicine; the Mac applications I was able to find which advertised themselves as consuming that format seemed to have… issues. I decided to switch rather than fight and let the work-issued Windows XP laptop earn its keep for a change.

My parents arrived; after dinner at Ma’s we dropped in on the usual gang of idiots at BSG, and collectively wrestled with the interface of the DICOM-viewing software burned onto the CD-R. The resulting informed consensus: well, yeah, there’s something there. Dad was still on Central time, so we called it a night early. This means I’m now two episodes behind on BSG; general opinion says that I’m missing painfully little. We shall see.

Thursday: Next Steps

Sometime in the afternoon, after the completion of my scans, I got a call from my neurosurgeon, Dr. Jason Lifshutz, expressing his apologies that he probably wasn’t going to be able to examine them for another 24 hours or so.

However, fairly late in the evening, the phone rang: it was Dr. Lifshutz, telling me that he’d had a chance to review the scans and would like to meet on Saturday morning. From the noises I could pick up in the background, not to mention the lateness of the hour, it was pretty clear that he was calling me on personal time: I appreciated both greatly.

I realized in conversing with him that I’d neglected to pick up the CD-R containing the results of my scans before my release, and made a mental note to take care of that the next day.

At some point in all of this I spoke with my parents, both of whom offered to drop what they were doing and come out here. I assured them that this was not necessary, surrendering to the warm comfort of my own bed, cushioned with an additional soft layer of Keppra.

Thursday: The Jump Start for the Car Parked in my Mind

If you ever find yourself in need
You can submit your request in writing
And this is what you do

Send in a self-addressed stamped envelope
To PO Box 900
Los Angeles
California
90212
And I will fill your prescription with some degree of accuracy
And then I’ll send it back to you

— Dick Valentine, “I Buy The Drugs”

Since apparently I can be trusted with a prescription for reasonably serious drugs, but not to wait until getting home to take a one-time dose of said serious drugs, I was discharged from O’Connor empty-handed, and had to visit my local Walgreens to stock up.

My prescription sheets were apparently not entirely regulation, leading me to have to wait for a bit while one of the pharmacists sorted things out. I passed the time sitting in a demonstration HoMedics shiatsu massage chair, starting to write up my experiences in MarsEdit. (Little MacBook, I love you so much, even if your Intel-supplied graphics “acceleration” causes you to break a fan-wheezing sweat whenever you contemplate the existence of more than two dimensions at once. You are my constant and faithful companion through light and darkness.)

Anyway, I eventually got my medication. Here’s the initial loadout:

  • Dexamethasone. I started off taking 2 mg of this three times daily, but we’ve already dialed it down to 1 mg twice a day, and will be dialing it down further over the next couple of days. A big-gun steroid — mainly intended, as far as I can tell, to prevent the lesion from swelling and crowding healthy parts of my brain, should it be so inclined. No ‘roid rage so far, that I can tell. Stop asking. I SAID, STOP ASKING!

  • Levetiracetam, brand name Keppra: an anticonvulsant. Since what I experienced last Wednesday bore some vague resemblance to Temporal Lobe Epilepsy, this may help prevent recurrences until we have a better handle on what’s going on. Basically, the idea is to damp down electrical activity in my brain just enough to prevent any additional storms. I’ve felt a little dreamy — a little dissociated, the way I might after having half a glass of wine — since I started taking it. I don’t know for certain that this is a direct effect of the Keppra, but it seems a safe guess. It’s not at all unpleasant, and it doesn’t seem to produce any gross impairment. Initial dosage was 500 mg twice daily, and we’ve stuck with that.

  • Pantoprazole, brand name Protonix. This is a “proton pump inhibitor”, intended to keep the other medications from causing acid reflux. As far as I know, it has no direct therapeutic function of its own. I’m taking 40 mg in the morning.

Thursday: The Curse of Thamus

I awoke, Thursday morning, with a full bladder, which is perhaps to be expected when you’ve had a little electrical pump trickling dilute potassium chloride solution into your arm at the rate of 70 milliliters per hour overnight.

Very first order of business: do something about that. This was complicated slightly by the presence of pump and tubing. A rational man would have summoned the nurse for help; I, of course, had to figure it out for myself. “Okay, it’s plugged into the wall, but the principal power source is clearly a battery, charged as circumstances allow. Can I just unplug it? Let’s find out.”

Yank!

A moment of bated breath, and… nothing. The pump neither darkened its display nor began screaming shrilly at me. First problem of the day solved. Untethered, I attended the necessities.

With the immediate issues attended to and the pump plugged securely back into its outlet, I mulled my next move.

In one of his PC Magazine columns, written in the late 1980s, Jim Seymour related the tale of an Egyptian King who rejected the adoption of the written word in his land, arguing that it would foster mental laziness amongst his people.

Or, as Barnard Hughes’s character put it more succinctly in Tron, “Won’t that be grand? Computers and the programs will start thinking and the people will stop.” (Glossing, of course, right over television and, ah, movies, but never mind that.)

Lying in my hospital bed that Thursday morning, I realized that old Thamus might have been on to something. I need to make a whole raft of phone calls, and I didn’t have anyone’s numbers. Not because my brain was going spongy, but because I’d never memorized those numbers in the first place. I’d entered them into my iPhone or Address Book once, and dialed them by tapping on names thereafter.

Now, though, both iPhone and MacBook were safely locked away somewhere. I did know my parents’ numbers, but the landline phone by the bedside required me a calling-card or credit-card number. I didn’t have the former, and I couldn’t remember the latter. Attempts to call collect incurred a brief recorded message from AT&T’s system that the the numbers I was attempting to connect with were not thus reachable. Lovely.

Having exhausted the limits of my questionable cleverness, I broke down, summoned the nurse, and requested the return of my gear from security.

Just as it arrived, and I was signing it out, the handset by the bedside rang. Somewhat surprised, I picked it up. “Hello?”

“Oh, thank God,” said a shaky voice, flooded with relief, on the other end. My mother’s voice.

“That’s, ah, good detective work”, was all I could think to say, knowing that she must have expended some time and effort tracking me down.

My father, having awoken and played back the voice-mail message I’d left him in the wee hours of the morning, had contacted my mom to find out if she knew anything about my situation. She didn’t, but she immediately set about finding out, starting by contacting two of my ex-girlfriends. One of them, Heidi, had correctly reasoned that O’Connor hospital was closest to where I lived and therefore the likeliest place for me to be staying; my mother had begun by trying to track me down there. One of the people she’d spoken to had, at one point, said something along the lines of, “Well, let me check all our records,” with an ominous intonation that suggested, to my mom at least, that the speaker might be talking about cracking open freezers and checking toe tags.

Just hearing me alive and breathing was therefore something of a relief. I brought her up to speed as best I could. She let me know that Heidi had already taken the day off and was on her way to O’Connor, which I thought was amazingly sweet. While I waited for her to show up, I set about letting other people know about my disposition: my manager, for one. Dirk, with whom I was scheduled to have lunch. Somewhere in there I spoke with my father as well.

At some point I decided that the most effective way to inform the widest number of people at once was via blog entry, so I started composing one while I awaited my turn in Diagnostic Imaging. I was served breakfast, consisting of scrambled eggs, bacon, cornflakes, and a cellophane-wrapped single-slice serving of whole wheat bread. It was all quite tasty, giving the lie to the standard slurs upon hospital food, even if do have reservations about the sanity of bread packaged by the individual slice.

After I’d eaten, I resumed writing. Some time later, there was a knock on the door, and Heidi entered, looking, I must say, better than ever. I thanked her for coming, for her typical display of resourcefulness and determination in helping my mother track me down. Then I brought her up to speed on what had happened so far, and what I anticipated happening; she shared some first-hand excerpts of her own medical history — she’s had personal encounters with CT scanning and MRI — to give me some idea of what to expect. We spent a while catching up, and then I asked her leave to keep writing, to which she graciously acceded.

At some point a nurse came by with a pitcher of “contrast agent” — read: “dye” — for the thoracic CT scan which I was to undergo in addition to the cranial MRI. It was allegedly iodine-based and clear, slightly sweet, with the faintest hint of a metallic undertone — not at all unpleasant, really. I was to drink cupfuls at regular intervals. Between that and my potassium chloride drip, I’m not sure I’ve ever been better-hydrated.

Around noon an attendant appeared to take me to CT. He was, it turned out, Spanish-Filipino, and we agreed on the truth of a shared favorite aphorism: “No hay bien que por mal no venga”, translated, that works out awfully close to Richard Bach’s “There is no problem that does not come to you with a gift in its hands.”

The CT scan was quick and uneventful. The first pass was made with just the contrast agent I’d already ingested, to outline my gastrointestinal system. The second pass followed the addition of a circulatory marker which, the technician had warned me, would make me feel slightly warm and flushed. I actually found the sensation rather pleasant, and verged on giggling as it washed over me. “It gets the little old ladies downright giddy,” he confided as I shuffled from the CT bed back to my gurney. In light of that confession, I kept my fleeting desire to giggle to myself.

As the CT technician wheeled me over to MRI, he mentioned that he’d previously worked with the MRI equipment, and that it was much more sensitive, capable of far higher resolution, than the CT gear. I asked him why, if that was the case, he’d switched specialties. He explained that it was also much slower, and that he was partial to the CT’s instant gratification.

It wasn’t until I sat parked in MRI waiting that I fully appreciated what he meant. The MRI imaging process may grind exceedingly fine, but it grinds exceedingly slow. While waiting for the patient preceding me to finish her turn, I worked my way through the day’s San Jose Mercury News, and leafed idly and indifferently through San Jose Living Magazine, before diving deep into a two-months-old People. (Yes, yes, I know. The brain damage has already begun.) Finally, though, it was my turn, and I was wheeled in. I am, thankfully, not a trace claustrophobic, which is fortunate since receiving an MRI scan involves being stuck in a shoulder-width tube with a plastic-coated cage bolted into place around your head. (You do get music, literally piped in courtesy of nonmetallic headphones reminiscent of the plastic-tubing variant once used on airliners. After initially indicating classic rock when asked my preference, I opted to stick with the classical music that was already playing.)

The MRI process itself is rather unexciting. Lie there and listen to the music, when you can hear it, while the machine makes loud noises of varying frequency around you. The whole thing takes about half an hour, punctuated only, in my case, by a pause for injection of another contrast agent — aqueous Gadolinium, this time around. The whole thing was oddly relaxing, and in fact I came awfully close to drifting off once or twice.

When all was done, I was wheeled back to my room, and the process for discharging me was set in motion. There wasn’t anything more to do, and I wasn’t in any immediate danger. Heidi was there and waiting, having gone to lunch while I was being scanned. She’d been so nice as to bring me food from California Pizza Kitchen, but I opted for the waiting hospital lunch instead. Pork chop, barley soup, broccoli, rice — and individually-wrapped bread slice again. Heidi and I hung out for a while and talked; eventually she had to leave to attend a school-related function for her daughter, Perri. I was sorry to see her go, but grateful that she’d dropped her day at a moment’s notice to come be with me.

Some time after Heidi left, a nurse came by to outline my prescriptions. Since I’d driven to the hospital, and would be driving home as well, we decided that it would be a bad idea for me to take the drugs before leaving. I was therefore given a prescription and, after a bit more paperwork, discharged.

All in all, I left with an even more positive impression of O’Connor than I’d had going in. The staff were warm, kind, and courteous, the facilities were comfortable and well-maintained, and even the food was good. At no time did I feel trapped in an endless column of faceless numbers, shuffling through the innards of the machine. I could think of much worse places, and ways, to experience what I did.

Intermission

I should apologize for ending the previous installment as a bit of a cliffhanger, but given that I was exhausted, and that I felt that exhaustion contributed to bringing on the first episode of whatever-it-was, I figured the best thing to do was to turn off the ringers on all of my phones and get some serious sleep.

Right now, I feel fine. I’m not imbalanced (mentally or physically) or otherwise impaired. I can walk, I can talk, I can recall all the usual obscure bullshit that makes my friends scratch their heads. What I had on Wednesday felt like a highly localized seizure in the part of my brain responsible for proper names, and it lasted maybe half an hour before passing.

Even while it was happening, it gave me some fun glimpses into the working of my own brain. I could remember Rob’s and Art’s names alone of all those on my row, but not Venkat’s, Podi’s, Michael’s, Sri’s, Ajay’,s Keith, Lawrence’s, or Yoko’s. Why? Is it because I’ve known Art and Rob longer, or because they’re friends, and so my brain has additional pathways to them that don’t exist for the others? (Klash would have been the acid test for that question, the one to answer it one way or the other, but I didn’t think to think of him at the time.)

My doctor, Dr. Lifshutz, has advised me to keep driving to a minimum, and to avoid activities that might elevate intercranial pressure, so I’m guessing no radical hill-climbing. I’m going to say that walking or biking casually on flat stretches is okay. I’m not going to starve, and I’m sure as hell not going to by lying under the blankets, staring at the ceiling and working on my tournament-level collection of bedsores.

Right now I’m going to do the archetypal slacker geek thing and, after a shower, wander down to Starbucks to work on Part 2, which will bring us up to date. Oh, and I’ve just discovered that my divorced parents independently made the decision to travel our here today; while the real thing is around, no one else will have to play Mom.

All wry snark aside, the outpouring of support from near and far has been really overwhelming. Thank you all.

Kurremkarmeruk is a Harsh Master

I’m writing this up here as an act of fundamental laziness, to spare myself the effort of relating the tale to dozens of people dozens of different ways, only to realize several weeks down the line that there’s someone I rather embarrassingly forgot to tell. “Wait, I didn’t…? Oh. No, I guess I didn’t.” This is a doubly vexed question when memory itself is the issue.

So: last night around 7:30 I was in my cubicle, juggling several balls at once. Ramping up on Python. Getting familiar with Ian Baird’s superb Changes.app. Working on getting diffutils support, including support for Changes, integrated into my Bazaar installation. Cleaning up and synchronizing a couple of shell scripts using some of the aforementioned tools.

It began with a story, or rather the ghost of one. Something tickled the edge of a narrative, but I couldn’t pull any specifics into the light. I had the notion that it was something I’d run across in the Jargon File, but the harder I tried to call up any details, the more they fled from me. After a bit of effort, I wasn’t even sure if it was something real or something I’d imagined. Anyone who knows me halfway well knows that this is not exactly typical.

I closed my eyes and put my head in my hands, laughing ruefully. “Okay,” I thought. “I’m more tired than I realized. Maybe it’s time to go home.” I looked up again, and noticed something odd: All the song titles in my iTunes window were wrong. I’d been listening to Zoë Keating and Apocalyptica in heavy rotation for most of the day, but none of the track names looked right.

My first thought was that my instance of iTunes had somehow corrupted its own library data, randomly mixing title and track. Only I realized with growing bewilderment that I couldn’t recall what the right titles were supposed to be. “Hey, that’s not ‘Legions (War)’, that’s, um… hang on a sec. And that Apocalyptica cover of Metallica isn’t ‘One’, it’s… okay, what the fuck is going on here?”

I started to feel as though I was re-enacting a classic science-fiction scenario, the one in which the character has slipped into a parallel universe, one with an alternate timeline. “You’re in a dimension where everything is the same — except for song titles!” But I wasn’t laughing quite so much anymore. I was confused and a little bit frightened.

I think I was beginning to realize what was actually happening. If déjà vu is the gut-level conviction that you’ve seen something before, even while the rational part of your brain is in a position to prove that you could not possibly have done so, then this was its exact opposite — a bedrock certainty that things you know you’ve been looking at all day are unfamiliar and alien.

Something, I’m not sure what, prompted me to lie down on the floor for a while. When I got up and stood aimlessly by the entry to my cubicle, I realized something else: with two exceptions, both friends I’ve known since long before I started at my current job, I could not recall the names of anyone in my row.

I could recall everything else about them: appearance, character, mannerisms, responsibilities. I could clearly picture their faces. I just could not, for the life of me, think of what to call them. Just as well that they’d all gone home, I supposed. I decided that it was high time for me to follow suit.

On my way out the door, I called my friend Will, who is one of those all-too-rare geeks with a really solid work-life balance in general, and a fascination with human cognition in particular. I thought I was calling him to relay an anecdote: “Hey, this just happened — isn’t it trippy?”

I’m not sure what I was expecting his reaction to be, but what I actually got was forceful and emphatic, amounting, in essence, to: “You will call 911, and you will call it now. If I don’t hear back from you in five minutes that the paramedics are on the way, I will escalate.”

Um, okay. I did as instructed, and then called him back. While the paramedics converged upon me, I learned that something similar had once befallen his mother, and turned out to be a minor stroke. That made his brutally no-nonsense attitude a little less unsettling, or at least less baffling.

The paramedics arrived, and ran me through a quick battery of checks. My pupils were not unevenly or excessively dilated. I could touch the tip of my nose with the finger of either hand while my eyes were closed. My grip with both hands was firm. A stroke seemed unlikely. Meanwhile my memory seemed to be returning: I was able to recall my car’s license plate number. (It would have been interesting to see if I could recall its nickname, “Pru”, short for “Prudence”, since whatever had happened to me seemed so acutely specific to proper names, but it didn’t occur to me at the time to try.)

With some reservations, the paramedics declared me fit to leave for the emergency room under my own power, and I did so, opting for the one at O’Connor Hospital. After the obligatory wait, which actually wasn’t too unreasonable, I was shown to a room, where after another brief wait I described what I’d experienced to a Dr. Brian Saavedra, who scheduled a quick CT scan of my head. I was wheeled off to Diagnostic Imaging, moved through the scanning process with efficient professionalism, then wheeled back to Room 20.

A short while later, Dr. Saavedra poked his head back through the curtain. “Well, we found something we weren’t expecting,” he said almost bashfully. “There’s a four-centimeter lesion on the left side of your brain.” I followed him to one of the display terminals where, sure enough, I could see an asymmetry, a region of differing brightness, close to the left side of my skull. Shortly thereafter I was introduced to my new neurosurgeon, Dr. Jason Lifshutz of Stanford, who expressed a strong preference for more detailed diagnostic imagery as soon as possible. The best way to obtain it, he said, was to keep me there overnight, and proceed to Imaging in the morning.

This seemed reasonable to me, so I assented. I was scheduled for an overnight stay, with CT scans of my torso and MRI of my brain to follow. I left what was intended to be a brief but coherent summary of the situation on the voice mail of my father the pathologist, gathered my belongings together, and was carted to my new room on the fifth floor. Once I’d settled in, the attending nurse asked me if I wanted to sign my valuables — laptop and cell phone, primarily — into security. I asked if she recommended that I do so; she did. With my things stowed, there was little to do besides go to sleep and see what arrived with the morning.

A Man of Sound Principles

The titular character of Pixar’s upcoming film, WALL•E — which, incidentally, keeps looking more promising with every new trailer released — is voiced by a fellow named Ben Burtt, whom you’ve probably never heard of. I hadn’t, until about a year ago. But I guarantee that, unless you’ve lived under a rock for the last 30 years, you’ve heard his work:

Yep, that’s right. Ben Burtt is the former USC physics graduate student who came up with the sounds for Star Wars, more or less inventing the role of “sound designer” in the process.

Here he describes the serendipitous genesis of his crowning creation — the warm yet menacing hum of “an elegant weapon, for a more civilized age”:

FilmSound.org has a rundown of some of his other creations; the frequently workaday nature of their basis only serves to highlight his gift for making the ordinary seem wondrous and alien. (My personal favorite: the twanging report of the blaster rifle began as the sound of an antenna guy wire hit with a rock, something Burtt discovered while hiking with his father.)

Wikipedia has additional information on Burtt, including the fact that when he’s not busy collecting and cataloguing the raw materials of his trade, laying out the acoustic canvas of the popular imagination, and voicing small but plucky robots, he’s perpetuating little sonic in-jokes, in particular the Wilhelm Scream.

Five web development environments you’re just as happy having never used

With apologies to Merlin Mann; brickbats and kudos to Chris for the pointer to the original inspiration, and his contribution of the second item, respectively.

  1. FORTRAN on Floats
  2. PL/I on Pontoons
  3. Smalltalk on Stilts
  4. Algol on an Alpaca
  5. REXX on Rollerskates

Update: Chris points out that Lisp on Lines exists, and is not a joke. Okay, well, it exists, at any rate. And its acronym, by accident or design, is LoL. Simula on Smack and Haskell on Hash cannot be far behind.

Anti-social

I just deactivated my Facebook account, and scheduled its MySpace counterpart for permanent destruction. It’s enormously liberating, and I highly recommend it.

Like a good number of others, I’ve found that Twitter does a very credible job of keeping me abreast of what my friends are doing, without the usual attendant toxic waste of time and resources. (Sparkling GIFs! “Virtual presents” that cost real money! Zombies! Fuck all of that. It turns out some things are so onerous that people will actually submit to a 140-character constraint on message size just to escape them.)