Friday, March 30, 2007

some good news for a change

We've just had an unprecedented three days in a row with things holding steady or slightly improving. Today, the mate honestly looks better and moves at a much more normal rate. RBC count is up a pinch, though WBCs are still holding highish at 20K. Knock on wood, after nearly a month in the hospital, and a horrendous five days where we talked about giving up, I think she's getting better.

It's so easy to get set back, i.e. it's way too early to say when she'll be good enough to come home. Given the equipment she's using, she might not come home until after transplant. But in the meantime I have many people to thank for their thoughts and prayers. Lennie, Norway, Ariel, Zarah, Rachel, Paul, Karl, Leann: you have all taken some time out of your lives to be angels, and it's had an effect.

We'll see how the weekend goes... but today's a damn nice day.

Saturday, March 24, 2007

internet emotions

Last night an online acquaintance gave away all his points, reset his avatar, and set his communication preferences to reject messaging of all types from everyone. It was a very abrupt act: there were no indications of trouble in his recent posts and blog even hours before. One of the admins and I speculated on causes, and how serious it might be. But ultimately, all she could do was send a inquiry (he cannot reject messages from admins) and wait. Admin or not, that's the most power we have: none of us knows the other IRL, and we are thousands of miles apart. Unless the friend tells us, and he's not lying, we don't even know the name of the town he lives in.

Fortunately, today he responded and everything is okay. He's feeling overwhelmed by events (I didn't catch if these were online or IRL or both) and wants to back off for a while. Simplify, I guess.

What's funny is that several months ago I had an urge to do a nearly identical act: blank out my profile and delete every post I'd ever made. There was too much going on IRL, with the mate's illness and the problems with getting the house built, and I think there was something going on online as well that triggered the desire -- I don't recall specifics. Ironically, rejection like this is a call for attention: throw a big black bag over everything, and people start to wonder what's inside.

The social network of the internet is a brand new form of communication, and with it come new forms of self-expression. People threaten suicide and noisy crash-and-burns ("I'm never coming back to this site!!!") The quieter form that I contemplated is a low-key form of this: it's still a demand for attention. The people who simply drop off a site are probably the most serious, but it's impossible to tell the difference between that and someone who's simply gotten bored with the site. I do have a friend who is borderline depressed and has mentioned suicidal contemplations to me in private. I speculate that if his troubles got serious enough, he would just do it and drop off the site without a whisper.

But are these really new forms? Parallels to real-life behavior can easily be drawn...

Wednesday, March 21, 2007

yes, a rollercoaster

Before all this started I'd heard/read serious illness described as a rollercoaster. At the time I thought this was exaggeration, but this opinion has by now been corrected. One day things are looking up, I sleep well; then next day we're unsure; the next day is bad and we may have to say our goodbyes -- then repeat. It's wearing but there's simply no way around it. There's no crying wolf here; we, doctors included, are in unknown territory.

Take a lung with cystic fibrosis. Expose it to all the wild stuff in the air and you have multiple colonies of bacteria, treat it with antibiotics a few dozen times, and you'll end up with varying degrees of antibiotic resistance. In other words, a random spadeful of dirt from a random garden. No two patients are going to be alike unless they start with identical base resistances, pass through identical environments, and get identical treatments. I imagine the older they get, the more individual they become. Hence unknown territory. There are just too many variables to track and too few different antibiotics.

Today is a pretty good day. Temp is holding steady though high-ish, a new type of oxygen delivery brings the saturation number up, the mate feels better rested and less slammed around by the fear. It would be nice to keep it this way for a few days, but no one can predict tomorrow. I'd like to think we're acquiring a small bit of zen, an ability to roll with what the day brings. Not anywhere near perfect zen, but enough to balance depression with optimism.

Sunday, March 18, 2007

fun, fun, fun

Video quality is awful but it's so fun to watch:


My doctor prescribed me something because I put on too many pounds after quitting smoking. (Still quit, yay me, 4 cigs since Dec 1.) My cholesterol was borderline already before I quit so I don't want to know what it's like now. The drug is Adipex, basically amphetamines and appetite suppressant. I can feel a buzz in my upper jaw and a little in my shoulders, it's not too bad, food is pretty uninteresting, and I start noticing all the crap that needs to be done around the house that's been neglected since the mate plowed downhill. So the house got a pretty good cleaning today. If I'm mentally engaged in activities I tend to forget to eat and drink, which in this situation is good (the eating part, not the drinking. Fortunately, the drug gives me a noticeably dry mouth, so that's covered.) Next stop, the 1040A form.

While I'm speeded up, the mate is slowed down. For the past year she's described her shortness of breath (which happens doing even the smallest tasks) as feeling like being waterboarded. The visceral fear of drowning, happening all the time. And it's gotten worse recently. I have a very hard time imagining worse. In response she and her doctors are experimenting with morphine and another tranquilizer to calm the fear, but it makes her sleepy all the time, and spacey. I have a somewhat hard time with this -- I think of morphine as the pre-death drug -- but she could sure use a vacation from those sensations.

Wednesday, March 14, 2007

bird still lost but falconer found

Today I got a map from the clapper rail researchers who'd spotted the bird, which confirmed I'd found the right place. I'd been about 300 yards from where the bird was spotted, so I went out there again. Apparently the falconers' psychic network is still going strong, because I ran into the bird's owner instead. He'd apparently lost her about a month ago about 3 miles away. It's good that she's apparently taking care of herself, and not leaving the area either. Everyone has everyone else's phone numbers now, so hopefully she'll be recovered soon.

Tuesday, March 13, 2007

gas station maps

Today I was forwarded a message about a Harris hawk with bells and jesses spotted about 8 miles from my home. It was seen twice, three hours apart - a bit longer than a normal hawking session, which implied it was sans falconer. I packed up a quail, a lure, glove and binoculars, and took a quick Google for the creek. Nothing in the first 20 results were any use. Instead of being sensible and trying to find a real map, I decided to be a falconer and just get in the car and go.

My Thomas Bros mapbook didn't have a detail page for that spot either, so I stopped in at a gas station to get a clue. The attendant in the store was at least 75% deaf and 50% non-English speaking. I had a hard time getting the word 'map' to register. He had maps, but sealed in plastic bags that you had to fork over $5 for the privilege of opening. I was not about to hand it over only to find out they don't mark creeks. I know, that's too practical, but what the hell.

When I was a kid every gas station taped a map to the store window. I had to go to 3 stations before I found one. And strangely, they didn't have the map for sale. But at least I got a few street names that took me to the creek, which was actually a canal for most of its length. I cruised around, looking for bundles of crows ganging up on something, windows down listening for a stray jingle or a Harris call. Nope, nope and nope.

I followed the canal down to where it let into the Bay. It had really turned into a pretty good sized creek by then, 10 or 15 yards wide, with all kinds of ducks pottering and bobbing around. But no Harris hawks...

Monday, March 12, 2007

cheers for my online friend Zarah

Zarah is a 19 year old living with her mom & stepdad and going to this weird Christian school where they treat high school students like kindergarteners ... seriously, like 'everyone put your heads down on the desk cos a student has misbehaved.' She hates being in that school, and her stepdad is like many stepdads, putting down her aspirations and interests as unimportant. She wanted to live with her biological father, but her mom wouldn't let her... until finally today her mom finally gave in. I'm really glad for her and I know she's gonna thrive in her new home. Congratulations bunny girl!

Sunday, March 11, 2007

food fight

The mate has been a slow eater for the past year, really, but now she eats hardly anything. She has no appetite. It takes a couple hours to eat a quarter or a third of her meal. Since she's getting so few calories, she gets weak and shaky and she doesn't have the energy to eat. They're giving her this 20% lipid solution through the IV but that isn't really enough.

Not being able to eat is completely foreign to me. I was raised to clean my plate, and to eat whether or not I was hungry, and if I didn't eat much at the appointed time I was badgered. So it's difficult for me to relate to this.

To the rescue comes marinol: synthetic cannabis, used to give the munchies to people with AIDS or having chemo or, apparently, with CF. It seems, at first dose, to be working. I spent last night at the hospital and watched her send back a completely uneaten half chicken. Today after the marinol she ate 5 bites in 15 minutes, which is more than I've seen her do in weeks.

I kinda doubt she's coming home this week, like we were hoping, but we'll see.

Thursday, March 08, 2007

eye floaters

This is more or less what my left eye sees now. It's not entirely accurate, since the ones that are away from the center are difficult to focus on and determine their exact shape.The grey fuzz used to be all there was, simply blocking things out. Now I'm getting real distortion of lines.

The question is, does this affect me seriously enough to want to have it removed? It's starting to become pretty bothersome; the hazardous part is that it takes me a little more time to focus -- time that may be crucial in heavy traffic.

some good news

We discontinued the antibiotic (Vancomycin) that we thought was causing the RBC problem, and switched to another. She's responding positively: temp going down and stamina going up. Things are far from perfect but a little improvement usually means more on the way. She may be coming home next week.

Tuesday, March 06, 2007

3 silly quizzes in one

Okay, I've finally joined the crowd and submitted to the Slightly Random Question Questionnaire Meme. But I'm only answering the ones I wanna answer!

01 - Why do/don't you want to get married?
Was married once won't fall for that one again

03 - How old do you wish you were?
What I was when I was married (25-30) only without being married - I want those years BACK dammit

04 - Do you know any foreign languages?
A little French and about 20 words each in 6 or 7 other languages

07 - What was your first job and for how long?
Computer lab clerk, 2 school years

10 - Would you carry somebody else's baby?
For maybe ten minutes, yes, as long as it doesn't pee or drool

12 - What kind of car do you have?

13 - How do you think the world will end?

14 - What's the first thing you'd buy if you won the lottery?
A really good bottle of scotch

16 - What was the worst fashion statement you've ever made?
I don't make fashion statements, I do fashion mumbles

17 - Who's your favourite eighties artist?
Probably Thomas Dolby

18 - Who would you fight if you had the chance to right now?
Dick Cheney

19 - What historic figure would you want to be for the day?
Neil Armstrong

23 - What do you day dream about the most?
Vacationing somewhere beautiful and interesting

25 - What's your favourite kind of plant?

26 - What kind of drugs have you tried?
Caffeine, nicotine, alcohol, cocaine, grass, lsd, amphetamines of various kinds, and the only one that does anything for me is caffeine

27 - What's your favourite season?

32 - What's the shadiest thing that's ever happened to you?
Driving around the Tenderloin district hooker-watching

34 - What food can you cook the best?
Any kind of cream sauce that goes over pasta

35 - What's your favourite coffee beverage?
What's a "coffee beverage"? It's COFFEE

38 - What do you think about Pluto not being a planet anymore?
It's just a designation. Doesn't change what Pluto IS. Richard Feynman said knowing the name of something, even in 10 different languages, doesn't mean you know a damn thing about what it is, what it does, or how it works.

39 - Do you think that it's ok to kill animals for sport?
Being a falconer, obviously yes

40 - What part of the newspaper do you read?
Everything except for sports and ads

41 - Do you tip your waiters/waitress' or delivery people?
Yep, pretty well too

42 - What's the most you've ever drank?
a half of a fifth

43 - How many piercings have you had in your lifetime?

50 - What's your favourite colour to wear?

51 - What facial feature creeps you out the most about someone?
bad teeth or misshapen skulls

1) What side of the heart do you draw first?

3) What color is your razor?

7) How do you feel about carrots?
great stuff

9) Which is the best Spice Girl?
What are spice girls?

14) All's fair in love and war?

20) Do you want a bright yellow '06 mustang?
There are cheaper taxicabs around

24) Would you rather swim in the ocean or a lake?
Ocean, lake is too squishy on the bottom

25) Do you wear a lot of black?

26) Describe your hair?
longish, getting thinner

30) Do you have a tan?
Sort of

34) Do you like orange juice?
Consume it by the gallons

My god, who hasn't?

laptops, various kinds of tools, and bedsheets

"There are WMDS in Iraq"

bananas and things that have too much sugar


Tendency to be an asshole and a procrastinator

Anytime. But not really well.



Twice, I think. No, make that 3 times.


OMG, does the sun rise in the east? Does a bear shit in the woods?



Almost as good as fish

Yes, actually, and I really use them.

Today, and I have a very broad definition of stupid


5. Do you believe in ghosts?
Not really, just a little for fun, i.e. ghosts are responsible for house creakings, misplaced objects, and lost socks

8. Jennifer Aniston or Angelina Jolie?
Angelina all the way

9. Can you honestly say you know ANYTHING about politics?

15. Do you have a secret that no one knows but you?

18. How often do you remember your dreams?

19. When was the last time you laughed so hard you cried?
Last week

26. Do you like Sushi?
Hamachi nigiri is the best! Then flying fish roe, California rolls, salmon skin hand rolls, dragon rolls, mmmm me hungry now

27. Have you ever narrowly avoided a fatal accident?
Assuming this means an accident in which a fatality occurred but it was (obviously) not me -- no.

29. Have you ever been caught stealing?

30. Do you like penguins?
How could anyone dislike them?

31. Do you truly hate anyone?

32. Rock or Rap?

35. Have you ever sang in front of the mirror ?
Yes, with the air guitar too

37. What food do you find disgusting?
Bugs. Grubs, maybe.

39. Have you ever made fun of your friends behind their back?
Hell yeah

40. Have you ever stood up for someone you hardly knew?

41. Have you ever been punched in the face?

42. Do you love lemons?
Love is not a word I would tend to apply to lemons...

43. Have you ever punched someone in the face?

Monday, March 05, 2007

a chill down my spine...

...when the mate tells me her RBCs are "crumpled." She got a pint two days ago and they gave her another one today. No one's sure why she's anemic but it may be that certain antibiotics can damage blood. She's still surprisingly positive but suddenly I'm very fearful that she isn't going to make the wait.

Sunday, March 04, 2007

chirp chirp ring

Being a falconer, I've ended up with some interesting pets over the years. I don't mean the hawks, but things you run into in the field: snakes, horned toads, frogs. Heavily pregnant rabbits might get an abrupt Caesarian and you end up raising baby jackrabbits.

Plus your bait and hawk food becomes pets as well. Early in one's falconry career, these are usually rats, then the rats sprout wings and turn into pigeons. Honestly, pigeons are pretty nice as pets. But the ones I liked best were the baby chickens, because they peep.

Peeping is undoubtedly a trait common to all flock birds, but baby chickens take it to a fine art. They do it as naturally as breathing, and it is just as fundamental. It's their way of indicating their presence within the flock, and locating it should they become separated. If you take one to a quiet place, away from other peeping birds, it will begin to peep loudly, and more loudly, and it'll get panicky. Bring it back to where it can hear its friends, and its peeping will become content again.

This is exactly the way we behave with cell phones. Something we barely heard of ten years ago is now a fundamental tool that we cannot be without. We call up friends just to say hi, announcing our presence to our flock. Every few hours we check back in.

We are now a nation of chickens.