Health

It’s hard to feel shitty when the Steve Miller Band is playing Jet Airliner in the middle of your head. Or smart, either — at least in my case.

Jeebus, all these decades I’ve been thinking the chorus was

Turns out “had a light on” is “airliner”. Well, duh. Of course. That’s the freaking title. But phonetically, Steve is singing “biggo jed adda line oh”. I say this with confidence because I just replayed it about ten times to make sure. That’s the audible, as they say in football.

Who knows what the hell Steve’s saying, anyway? Well, some of us do, and to explain, we have the Internet. For example, The Joker begins,

Or is that pomitus? Hell, The Pompatus of Love is a whole movie devoted to the question. The Straight Dope sez that “pompatus” (that’s how it sounds) actually goes way back:

Anyway, I’ve had a bad cold the last few days, and right now I’m sitting on the couch with a fever, trying to think and write while a vacuum cleaner roars in the next room. But now I’ve also got these Etymotic ER6i earphones jacked deep into my head, muting the noise and substituting ol’ Steve, singing about getting on “that 707″ — a plane nobody outside of Iran still flies. And it’s getting me high, just from the driving energy of the song.

Beats thinking about death, which comes easy when you’re 61 with a fever, a gut, and a history of exercise that consists mostly of getting dressed. But music helps. Music is the best evidence of immortality that we have.

Music is life. And vice versa. Listening to three-decade old Steve Miller on good earphones is life transfusion.

So is listening to an even older song: The Doors’ When the Music’s Over, from Strange Days, a brilliant, beautiful piece of work. To me Strange Days ranks among a handful of perfect albums, first song to last.

Which is When the Music’s Over, of course.

Strange Days came out in late ‘67. I bought it in the summer of ‘68 after Ken Rathyen, a guy on my ice cream route (he was a lifeguard at PV Beach in Pompton Plains, NJ) told me to get it. “Every song is a gem,” he said. He was right. (Kenny, if you’re out there, Yo!)

That fall I shared an apartment in an old house on Spring Garden Street in Greensboro, near Tate Street. Next door was a big Victorian, already boarded up. On Halloween night, a bunch of turned off all the lights and listened to Strange Days. After When the Music’s Over was over, we were deep in a creepy Halloween mood, and decided it would be fun to break into the “haunted house” next door. So we got a flashlight out, sneaked over, and found a way in.

There was no furniture, just empty rooms, with a coating of dust on everything… except for the footprints on the stairs. They were barefoot and small for an adult. We followed them up to the second floor, where they stopped. No other footprints went down.

Feeling creeped out, we pressed on, exploring this big old house. Still, other than the footprints, there was nothing.

Then we found the door to the attic. It was narrow, and opened to a narrow staircase. At the top was a camped room where there were a few items of furniture and some boxes. In one box was a diary by a girl who had lived there. She reported daily on what she saw out the window at the front of the attic, looking down on Spring Garden Street. She also gave weekly summaries of her favorite TV show, Whirlybirds, which last ran in 1960.

One name that appeared often in the diary was Jan Speas, who lived next door. I wondered if this was the same Jan Speas who taught creative writing at Guilford College, where I was a Senior at the time. (Jan, whose maiden name was Jan Cox and wrote as Jan Cox Speas, was best known as a writer of historical romances. More here.)

So we took the diary with us, and I brought it to Jan. Yes, Jan said, she remembered the girl well. They were good friends, and the diary was touching because the girl had later died.

Three years later Jan died too, of an unexpected heart attack. She was 46.

In August, 2004, Ed Cone’s Piedmont Bloggers Conference was held in the same exact spot as the condemned houses: the one I lived in, the haunted Victorian next door, and Jan Speas’ house on the other side of that one. I wrote about it here, and told the same creepy story here (but it doesn’t come up now, which is why I’m repeating myself).

But I’m still here. Dancing on fire. And getting back to real work, now that the vacuum cleaner is off.

Since I lack a car here, I haven’t gotten out much, and not at all to any place that gave me a vantage on the fire. Until today, that is, when we went to Goleta and I had a chance to pause on Hollister Street by the airport where the Forest Service runs P3 Orion air tankers up to the fire sites to dump bright fire retardant on the landscape. (It’s not bad, by the way. Essentially, it’s fertilizer.) Here’s the photo set. (Also added more maps to this photo set.)

Tag: sbgapfire.

First, kudos again to Edhat’s news list for not only gathering info from many sources, but for giving equal weight to both professional and amateur sources — and for hosting a great many comments on some of the postings. As an interactive local news service, “Ed” does a fine job. When surfing for the latest on the fire, it’s a good place to start. Others among these are good as well:

• Inciweb’s page for the Gap Wildland Fire
• Noozhawk (Latest on evacuations, by Bill Macfadyen, and Report from the Front Lines, by Laura Hout — both from early this morning)
• The Independent new (A report from the Western Front this morning, by Bill Preston — and here is a fire map by Ray Ford)
• The Daily Sound
• The Los Angeles Times (more on their latest below) Photo gallery of the Gap Fire
• KEYT (Local news)
• KCSB (Gap Fire coverage)
• KSBY
• KTMS/990 and 1490am (Gap Fire info)
• Santa Barbara County Fire

Second, I have been somewhat remiss by not including GeoMAC among sources for following the fire. You can follow maps from multiple sources, as I make screen shots and upload them, here. The latest from MODIS shows new fire activity (red dots, meaning in the last 0 to 12 hours) near highway 154 and on the uphill (north) and west sides of the fire perimeter. Highway 154 (San Marcos Pass) remains open.

The LA Times this morning has ‘Critical day’ dawns for Goleta fire, enlarged by overnight wind gusts, with a dramatic photo of an air tanker (see last paragraph below) dropping red fire retardant near a house. The summary:

The blaze, while 24% contained, grew to 8,357 acres. Firefighters plan to concentrate on protecting homes to the east before another night of ’sundowners.’ At least 2,663 homes have been evacuated.

Note that there are 97 comments so far to that story.

KEYT has a summary of evacuation areas as of 5pm yesterday. That story also has a map.

Note that chapparal wildfires, especially in steep rocky country like this, do not only spread from their edges. They also spread by dropping burning material at distances from source flames, which can have powerful updrafts. This makes fighting these fires very hard on the ground.

Inciweb’s page for the Gap Fire currently gives its size as 54oo acres, with 1072 personnel working on the fire. Under Fire Behavior, it says,

Down canyon winds continued through the night pushing the fire front into the north side of Goleta and widening the flanks east and west. Fire also continued to the north into the wind overnight with limited movement.

Planned actions:

Structure protection, create safety zones and establish contingency lines In the Goleta foothills. Construct control lines when conditions permit. Damage assessment from last night will be conducted.

Remarks:

Firefighters are from several agencies including the United States Forest Service and Santa Barbara County Fire Department and several local cooperators including the San Marcos Volunteer Fire Department. The California Highway Patrol, Santa Barbara County Sheriff’s Office, and the American Red Cross are assisting. ICP has been established at Earl Warren Showgrounds. Dos Pueblos High School will remain a staging area.

Current wind is gusting at 30mph from the north (down the mountains, toward Goleta). The temperature is 75° and the humidity is 25%.

InciWeb has no maps for the fire, but does suggest visiting these sources:

• GeoMAC Wildfire Mapping Viewer
• NOAA Map for animated smokeplumes (only source with relatively live photography from orbit)
• NOAA Fire Detection and Smoke
• USDA MODIS Active Fire Detection Program
• Fire Planning & Mapping Tools

It’s sad that InciWeb remains both slow (often overwhelmed) and behind its own curve. I’ve had a number of email exchanges with folks working on InciWeb, and have great respect for the hard work they do within what is essentially a bureaucratic morass. I think the lesson here is that we have to do our best with many sources, and the messiness that involves.

Somewhere among the sources above I read that an aggressive aerial attack was planned to start at dawn this morning. I’m too far east (~5 miles) of the fire to see that; but it helps that Santa Barbara’s airport is in Goleta itself, almost next to the fire, and is home to one of the main Air Attack Bases for the U.S. Forest Service. Here is a photoset I shot of that base, and the P3 Orions used for bombing fires with supressant. I am sure these are in use right now.

Finally (at least for now), I want to say that I’m optimistic about this fire, even though I must disclaim any qualifications for that other than as an amateur observer. I feel a need to do that because I’ve also shot photographs that could easily be seen as scary. These two sets, for example. Please note that I shot those with a long telephoto lens to maximize the apparent size of the sun — reducing the apparent distance between subjects in the photo (such as Mission Santa Barbara, the fire and the Sun). Also because, hey, I wanted to take good photos.

Speaking of which, I also shot the fireworks from up in the hills last night, where there was also a pretty rocking party. Life goes on.

Tag: sbgapfire.

I’ve loaded too many pictures onto this blog, so for this round I’m going to just point to shots elsewhere: in this case to a photo set of  maps built with .kml files from the MODIS Active Fire Program and Google Earth.

The latest one, from about 6pm this evening, has fewer active hot spots than the previous one from 4am this morning, or the one before that from yesterday afternoon. Not sure how to interpret that, but whatever. It’s data.

This afternoon we took a walk along the beach, where hundreds of families and other social groups had set up homes and kitchens and play areas along the beach and in the park, in preparation for the fireworks tonight. It’s an annual festival, and a lot of fun. There was hardly a sign of the fire, since the wind was mostly onshore.

But this evening the wind shifted, and now we’re getting orange clouds of low smoke and ash fall.

The fire hasn’t stopped the fireworks though. Going next door now for a party. Watch for pictures of that show too.

Tag: sbgapfire.

So now it’s time to put lessons to work. The Patient as the Platform is my latest post over at Linux Journal, and it proposes something that goes beyond merely giving patients control of their health care records. (As do, say, Google Health and HealthVault.) Specifically,

I believe that having a data store for health records is a necessary but insufficient condition for the true independence and control required for each of us to be the point of integration for the health care we get, and the point of origination for controlling that care — for getting second and third opinions, for summoning data across bureaucratic boundaries, for actually relating to the systems that serve us, rather than serving as dependent variables within them.

For patients to become platforms, we need more tools and capabilities that are native to the patient. All of us need to be able to walk around the world with the ability to jack into any health care system and drive it. How? I don’t know yet. I’m still new to this. But I do know that these are capabilities we need to add to ourselves, as independent drivers of health care services. And that these must be based on free and open standards and code.

The new health care infrastructure must be built on independent and autonomous patients, not on systems that surround and subordinate patients. Once it is, the systems will be vastly improved, and far more profitable for all.

It’s a VRM angle, of course. And it concludes with the same pitch I’ll give here. If you’re interested in putting a shoulder to this boulder, or to weigh in on any of the other development efforts we have underway, come to the VRM Workshop on July 14-15 at Harvard. That page is short on details, but we’ll be filling them in shortly.

In the hospital I had neither the means nor the energy to get pictures from my little Canon point & shoot to the blog. But I’m home now, so I just put up a small set of shots I took there over the last week. The ones with my face show a happier guy than I was most of the time there.

It’s great to be out. I’m still anemic, jiggling with fluids and amazed at how much my muscles hurt in wierd ways just from climbing stairs. But I’m on the mend and looking forward to getting back to Real Work gradually (I need lots of rest), and to talking and writing about stuff other than sickness.

Meanwhile, thanks to everybody who wished and prayed me well. It worked. Now let’s keep doing the same for our buddy Maarten. Somewhere I have pix of my conversation via Skype with Maarten and Lori this morning, which I’ll add to the photoset.

I’m almost old. Sixty-one next month. But old enough for the wear to do more than show. It’s performing now. The trick to longevity at this point is to dodge the complete failure of any one of many systems that are all wearing down. Aging is fatal, and the number of single points of failure is not small. Combined ones multiply that number.

It seems like ten years ago that I was thirty. Life is short at its longest, and it goes fast, especially if you’re having fun.

Which brings me to my point. Almost.

It’s a matter of genetic luck that I’m not a drinker. A little beer and wine, but that’s about all my body can take before it says No More. Been that way since I was young. Drugs have also always been unpleasant for me. Smoking didn’t appeal in any case, but my father’s addiction to it — and the discomfort it caused the rest of us, for example when sharing a room or riding in a car — made me determined never to do it. And all those are reasons I’m alive today.

The other people in this ward, the one I’ll leave after I scarf one last free meal — don’t look so good. It’s a cardiac ward. When I walk past the nurses’ station I look at the screen of EKGs etching their green pulsed lines, one for each patient. None look good, or they wouldn’t be here. Alarms go off all the time. The patients look terrible. Even if they’re not old, they look it. One more reason I want to get out of here is to stop hogging a room that a needy patient could fill.

So I was talking to one of the nurses. What brought most of these patients here? Smoking and drinking, was the short answer. Reminded me of what a doctor friend told me many years ago. “Without tobacco and alcohol, you could close half the hospitals.”

We can’t get rid of stuff that’ll kill us in the long run. But we can choose not to indulge them.

This last week a lot of people have told me that stuff I say is important to them. Sometimes I’m called “influential”. If I can influence one young person to quit smoking or drinking heavily — for the duration — I’ll be happy.

If you’re lucky you’ll all be as old as the folks here some day. And if you’re smart, chances are you won’t be laying in a place like this.

I still have three of these, my MRI says. So, for the first time, I’m watching The Last Lecture, with absolute intentions not to give my own Last Anything for another few decades. Highly recommended, by the way.

People have been asking, so here’s the update.

I’m due to start “clear liquids” in the morning. I was allowed to start tonight, but decided against it because if something goes wrong I’m not sure the slim night crew can handle it. (Not a knock on this hospital, just the Way Things Are in the hospital biz.) I have been off food since a week ago yesterday (starting with prep for the procedure that put me here last Saturday). One more night won’t hurt. Also, for what it’s worth, I have not received “food in bags”, but rather various other fluids. The bag closest to me says “5% DEXTROSE and 0.9% SODIUM CLORIDE”. Stuff like that. Yum.

We seem to be past the blown vein problem (blew four in 24 hours, filling my hands and arms with stuff). Both my hands are still puffed up and my right arm is down to about 1.5x the volume of the left.

I have little pain. This is the key, and an important goal. I’m otherwise pretty wasted and very anemic, mostly because I’m already a little anemic in any case and all these fluids have only thinned my blood out more.

My pancreatic enzymes, liver chemicals and other indicators are back in the normal range. For me. I’m not normal, but it’ll do.

And I’m looking to get out of here on Sunday morning. And taking Suzi’s advice as well, I hope. Her blog, A Pain in the Pancreas, is a big help.

Bonus link: Wierd Al’s Pancreas.

Also a warm shout-out and a big hug for my partner in recovery, Maarten Lens-Fitzgerald, who is now deep in the Tunnel of Chemo. I’m gonna get through this thing a lot sooner. (Though we still don’t know what the “cystic lesions” on my pancreas are. And won’t for another month or more, since I doubt I could tolerate another endoscopy without repeating the last week. Not soon, anyway.)

Francine Hardaway:

I love the New Yorker line. Read the rest of the post. Wise stuff, all.

A sure sign I’m getting better: craving food. My wife mentioned taquitos a few minutes ago and my mouth watered immediately. I wanted to walk over to Jose’s right then, barefoot in my hospital gown.

We won’t start until tomorrow, my GI doctor told me yesterday, no matter how good I felt. That’s cool. What’s one more wait after eight days of starvation?

Not everything has gone perfectly. I’ve had three IVs “infiltrate”, and my right arm is still swollen to odd dimensions, filled with fluid that should have gone in a vein. But I slept last night without drugs, which was cool, and I’m clearly on the mend. Can’t wait to gtf outa here.

Everybody’s different. That’s the problem. Medicine and medical care, however, isn’t about that. They treat templates. Differences are accounted for, such as in my case, where I had a 1-in-20 chance of developing pancreatitis. But I weighed the odds, signed the consent form, and got to be that 1. So differences still matter. None of us is a template.

I’ve always had hunger pains. These were different from the feeling of hunger but they came at the same time. Certain other family members also have them. I’ve looked many places on the Web for answers to what my hunger pains actually are, with slim results. “Stomach acid” is the main suspect. But other people have that when they get hungry too, without the pain. What’s different in my case? The doctors say “That’s a good question”. Whenever somebody says that, they don’t have the answer. Would this condition have suggested that I might be sure to get pancreatitis if the inside of my pancreas was probed? I’d say yes, because that’s just instinct. I don’t know.

I tend to be prone to minor problems with what TV ads used to call “irregularity”. In both the liquid and solid directions, if you know what I mean. Was this a harbinger as well? Especially since I had spent more than a week prior to this event fighting irregularity of the liquid sort? How?

Anyway, pancreatitis in me was manifested, principally (though among other symptoms) by hunger pains in the extreme. Without the hunger. What does that tell us?

And what does it tell me now that my hunger pains (which are now associated with pancreatitis) are accompanied by actual hunger — not a lot of hunger, but some?

So, I have questions. Which means I’m feeling better. I still have a long way to go. Four bags of fluid now drip into my left wrist, and six colored wires run from a heavy portable telemetry unit to sticky tabs on my chest and back. I keep a spitoon by my side and dose my bathroom visits with choreographic precision, since wiring and tubing management — not to mention work with craphats and pisshats — makes every vist a complicated ordeal.

As of tonight I will have gone a week without a meal. And the end is not in sight. Yet.

[Note: I wrote this yesterday, 18 June. But the blog wasn't working. Now (1pm, 19 June) it is.]

Yesterday, when I started feeling better, I had dozens of one-liners about the absurdity of hospital life. Crapping in “hats” for example. One’s humor gets low here. Mine especially. It also helped to have friends stop by, chew the fat and joke around.

But by late evening I was at the “one step back” stage, after two forward. Since then, lots of pain, barfing, discomfort and worse.

I’m maybe getting better now, at least in some ways. I also have so much “fluid retention” that I look like the Michelin guy. My weight is now well over 200. I’ve never broken 190 before and was dropping below 185 when I got in here. Given the fact that I’m eating my body rather than food, who knows what my “real” weight is, other than absurd in any case.

Finding the time, and the means, to take or make calls is nearly impossible. Blogging and twittering are hard too. So this is a group message of thanks to all who wish me well (and there are so many of you… I’m lucky that way). Not sure how much more can be done. I am sure that the hospital folks and local relatives and friends will try to do it.

And we’ll see how it goes.

So here I am at 3am for the second day in a row, taking a moment betwen hits of Dilaudid to do something that was for many years normal for me: writing something.

I have a new normal now, and it’s getting old. I’ve lost count of the wires and tubes running from my body to mechanical and electrical instruments. I haven’t eaten in close to a week, and my intake is entirely from bags of liquid dispensed by “smart pumps” that beep loudly and often for what seems most of the time to be no reason at all. I’m creepily cool now with being 90% helpless, even as I’m close to 100% hopeful that I’ll get past this thing, which remains pancreatis, with complications, the latest of which are fluids in my abdomen, with encroachment on my right lung: the same one that took a hit from a wayward embolus a couple months back, when I first made my acquaintence with this hospital.

It’s a Harvard teaching hospital, which means that a procession of young doctors come through, each with a fresh line of inquiry, few of which, when fulfilled, contributes to an institutional memory. Most of the doctors I’ve seen here have been only once or twice. Nice folks, all, however. And all less than half my age, it seems.

My new room is a solo one. I miss the company of other patients, but I do like some of the posh features, such as a toilet that has more than five square feet of flooor space. They moved me here so they could monitor me more closely. I do appreciate that. But the reason creeps me a bit: so I won’t get pneumonia or chronic pancreatitis of the sort Suzi reports here.

Well, that’s about all I have energy for. Look for another report in a few hours, I hope.

And thanks again for all your kind wishes. I’m really looking forward to returning to normal normalcy.

They’re putting me on this now, so I’ll feel no pain and breathe more deeply. Which I’ll need to prevent a slightly collapsed lung from turning into pneumonia. That’s on top of the pancreatitis.

All from an inconclusive diagnostic procedure.

Well, my experiment with staying off morphine didn’t pan out. An x-ray that required laying on my very tender belly this morning put me over the edge.

More reporting (and hopefully on matters other than health) when I feel like it. Pretty spaced out right now.

I have three bags hanging from a rolling pole next to my bed here at the hospital. These Y down do a pair of IV needles, one in each arm. The two big bags are for hydration. The third? I dunno. (The nurse just told me it’s magnesium.) Since visiting Amsterdam two Wednesdays ago, I’ve shed a lot of liquid, to be polite about it. Now I can’t take in any liquid, or food, at all, which is one way they calm my innards and stop my pancreas from freaking out, which is what it did yesterday morning as a delayed reaction to the endoscopic retrograde cholangiopancreatography (aka ERCP) exam I had here at the hospital the day before.

One in twenty endoscopic probings of a pancreas results in pancreatitis, and it was my misfortune to hit the bulls eye. I woke up with Xtreme hunger-type pain in my belly yesterday, without the hunger. Nausea came later, and a visit to the emergency room not long after that. Now I’ll be here until the pain stops and hunger returns. Those are the Good Signs. So far, not even close. In fact, the pain remains bad enough that morphine doesn’t do the full job. It just reduces the pain to a point where I can do some of this. Which I’m doing between working on some writing assignments. We’ll see how it goes.

Meanwhile, the good news is that This Too Shall Pass. (Better it than me.)

Alas, I shall miss Supernova, and perhaps more than that. We’ll see. I still hve high hopes of flying west midweek or so, although that seems mighty ambitious from where I sit (actually recline) right now.

Two days ago I had a colonoscopy. The doctor found and removed a polyp. Routine stuff. Today it was what I guess is called an endoscopic retrograde cholangiopancreatography. The first looked up my ass, the second down my gullet, in this case to look inside my pancreas to see if cystic lesions appearing in an MRI were communicating with the pancreatic duct. Nothing was found. Not sure what that means. Probably nothing.

Both involved so much sedation that I remember approximately nothing from either. Well, I remember waking up enough to see the polyp on TV. It looked like a sea anemone. I slept through the second procedure entirely, or forgot it thanks to the drugs’ amnesiac effect.

There is a risk of pancreatitis with the latter procedure. Makes for icky reading. It does concern me that my tummy hurts a great deal — enough that the work I hoped I could get done tonight is nowhere near my mind. My tummy always hurts when I’m hungry, and it hurts the same way now, so I don’t know what the deal is there. All I can eat is sherbet; and all I can drink are broth and water, neither of which leave me feeling filled.

I can’t sleep. And all I can think about is health shit. Or vice versa. So I blog. Comes naturally.

Got a lot of travel coming up. Supernova in San Francisco. VRM-related stuff in Utah. “Home” for a day in Santa Barbara before going to London and Copehagen for business and more VRM-related stuff. (Reboot is at the latter.)

People tell me that travel is bad for me, but the truth is that I love it. The thrill of flying over and studying the Earth never leaves me. In fact it only gets more interesting every time I fly somewhere because every flight is a chance to learn more about what’s on the ground — and whatever else is in the sky. Such as rainbow ice and auroras.

Anyway, all this stuff is about getting older. The failings of the body and the enrichment of the mind. Another of life’s wonderful ironies.

[Later...] Meanwhile it turns out that Maarten’s tumor is a mediastinal germ cell one. It’s treatable, and he goes in for chemo shortly. As cancer goes, that’s good news.

I didn’t really know Maarten Lens-Fitzgerald before this last week, except by emails and a delightful interview he did with me at LeWeb3 in December. But I fell in love with the guy after he and his associates brought me to Amsterdam to talk at Mobile Monday and do a couple consulting gigs there (which he set up for me). Besides being a smart guy and a great host, Maarten is just a good dude and a true mensch. Gracious, caring, upbeat and much more. You can see it in these two photosets from MoMo. Maarten, his family and whole social network made my visit to Amsterdam a joy from start to finish. It’s a great city anyway, but it’s lucky to be graced with folks as good as this whole bunch.

On Wednesday, the day I flew home, Maarten went to the doctor to check out a coughing problem. Turns out he had a tumor, bigger than his heart, right in front of it. Since then he’s not been far from my own heart, as well as my mind.

I wasn’t going to write about it, because I didn’t know how private Maarten wanted to be. But it turns out he’s both tweeting and blogging what he calls his new journey. So is his wife, Lori. So we’re together with him on this thing. Such is the nature of what Twitter calls following.

He’ll find out more about the tumor tomorrow. I’m praying hard it’ll just be an oddball thing they can cut out and be done with.