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Day 7 report

June 20, 2008 in Future, Health, Life, problems | 21 comments

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.)

Can we end URLs that won’t fit in a tweet?

June 20, 2008 in Future, Ideas, Past, problems | 3 comments

Here’s a URL, from Live Maps, that goes http://maps.live.com/default.aspx?v=2&FORM=LMLTCP&cp=qtd9g08ttwy7&style=b&lvl=1&tilt=-90&dir=0&alt=-1000&scene=23698570&phx=0&phy=0&phscl=1&encType=1.

Twitter does a nice job of shrinking URLs to tinyurls, but chokes on that one.

Digression… For what it’s worth, that’s the WABC/770 transmitter in Lodi, NJ. The signal it produces looks like this. I grew up a few blocks north of there. The signal came in on every TV channel when you turned the volume down, and even when the TV was off. That was the old MusicRadio WABC, which dominated Top 40 in New Yawk from the early 60s through the 70s. By day you could get it far up the Hudson, all the way out Long Island, all the way down the Jersey Shore, and nearly to Baltimore. And at all the summer camps out on the lakes in the mountains of New Jersey, New York, Pennsylvania and Connecticut. Nothing like that now. The old beast is just another AM talker.

What she said

June 20, 2008 in Health, problems | 4 comments

Francine Hardaway:

But I, as the widow of a physician, a mother, and an unlicensed practitioner of American healthcare system mechanics, want to use this moment not only to wish Doc the best, but to draw a lesson: NEVER GO TO THE HOSPITAL ALONE. Take an advocate with you, and try to make sure that person is a New Yorker and very aggressive. Ask a million questions, and get your loved one the attention he/she needs.

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

Differences

June 19, 2008 in Health, News, problems | 19 comments

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.

No jokes

June 19, 2008 in Health, problems, VRM | 2 comments

[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.

Getting scarier

June 16, 2008 in Health, problems | 30 comments

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.

Back on drugs again

June 16, 2008 in Health, problems | 17 comments

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.

Progress…

June 16, 2008 in problems | 6 comments

It’s 3:15 am. This is good news. I’ve mostly slept since the end of the Celtics-Lakers game, which I watched on the little TV suspended over my bed here at the hospital. I’m sitting up on the edge of the bed now, typing on the laptop without getting chills. That’s new.

I still have a lot of tummy pain, but I’ve managed to endure it without morphine or other pain killers. Various nurses and doctors keep telling me I don’t have to put up with pain, but I’d also rather not put up with the extreme wierdness that morphine brings to my body and my consciousness.

I never liked drugs, actually.

A friend called last night and said, “Dude, you’re hogging all the morphine!” It hurt to laugh, but it was great therapy.

I’m not hungry yet, but I do feel like I’m heading toward breaking through this thing. We’ll see.

Meanwhile, thanks to everybody for all your kind wishes. They help a lot. Now back to bed.

Up the tubes

June 15, 2008 in Future, Health, problems | 44 comments

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.

Giving it from both ends

June 13, 2008 in Health, problems, Travel, VRM | 13 comments

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.

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