November 10, 2005

Subjective Time

I have online in some capacity or another since at least 1993. At that time I played a MUD (yeah, one of the early online D&D style games) called MUDdog. It was fun ... interacting with people from all over the United States ... and a small handful of folks overseas. (This is going somewhere specific -- hang on.) After that, I joined a couple of email lists and while I missed the instant interaction (and the game), this was also a fun way to intereact with people I would probably have never met. I learned a lot. In fact, a group of us formed "The Banshees" from one of those email lists -- just a group of online friends who emailed constantly. And, in the early days of the web, I made friends with people from South Africa and Wales ... just because they'd been to my website.

Today, of course, the internet crosses a lot more boundaries than back in the days of watching each character come onto the screen as the other person typed it in (and watching the cursor go back a space as that person corrected a typo).

Now with chatrooms, IRC, AIM and other instantaneous multiple connection programs, I meet more and more people from around the world. I regularly talk with folks from Norway, China, South Africa, New Zealand, Australia, the U.K. and there are probably more folks that I don't even recall are from other countries.

And I have to wonder this --
Do people who grew up reading science-fiction and fantasy have an easier time dealing with the idea of subjective time?

I mean, I catch myself every morning starting to say "good morning" to everyone on the ShoutBox. But it's not morning for everyone else. In fact, it's at least 5 hours later there for most people than it is for me. Some of them it's more like 10 or 12 hours later ... they're getting ready to go to bed.

I can remember all the SF books I read where the author talked about how subjective time was. How it could be day on the planet, but subjective night on the spaceship ... and the spaceship folks would simply adjust to the planetary time out of courtesy. (Most of the time.)

I find it interesting just how often I call on the SF books I've read over the years to guide my interactions with other people -- and not just in a geek way! :)
It's just that SF has dealt with how we deal with "the other," be that other a new race, a new species or the guy in the next country over and I've seen these authors play out what happens if we're not all respectful of each other (which I do NOT consider the same as not saying what you think).

Quick Survey:
1) How do you deal with the international realm of the internet? Is English your first language?
2) How would you feel if the bulk of the internet was written in Gaeilge or Estonian instead of English? What if the Russians had perfected computers and refined intranets to the point of the internet first?
3) Would more countries be learning Russian or Gaeilge or Estonian?
4) Have you ever read much sci-fi?

Inquiring minds wanna know!!

Posted by Red Monkey at 5:09 AM | Comments (5) | Blog | Stumble

November 7, 2005

skritter, skritter

My house was built in 1952 and it's got some interesting quirks to it. For example, our basement is finished -- not drywall finished, but there's a good tile floor and a drop ceiling and one room is panelled. But to get to the basement, you have to go outside to the garage, then down the stairs and into the basement. Quirky. And the garage is cold, too.

We have a new roof on the house and yet, last winter we had the mutant chipmunk from hell nesting in the loose, blown insulation. We never did catch him, although we did see him climbing the outside walls of the house and eventually managed to plug where he was coming in at.
Why was he the mutant chipmunk from hell? He ate the poison bait we put down and it didn't kill him ... he just looked like he was a chipmunk colored baseball that summer.

So, I was less than pleased when again as this winter begins, I could hear that skritter, skritter through the insulation above my head. This time, instead of mousetraps (which he just ate the peanut butter off of) or poison bait (which just made him fat), we put down two glue traps.

Now look, I like chipmunks. They are one of my favourite little critters. I think they're adorable.

But at 4 a.m., going skritter, skritter above my head enough to actually wake me up? Not so much anymore.

I thought about live traps, but in doing research in ridding ourselves of these things I discovered they wander for about 17 miles or so. Releasing him 20-25 miles away ... I no longer thought they were all that cute.

So, I put the glue traps out last night. I checked today after work -- no surprise, one of the traps had been pulled partway into the insulation, no chipmunk. I pick that trap up and move it to another area, hoping to still entice the little bugger.

Second trap. No chipmunk.

It's a terrified little mouse.

Now I don't know why that made a difference. I was steeled for the chipmunk. The mouse threw me.

Suffice it to say that after much internal debate over the best way to dispose of the poor little guy ... I did eventually take care of it.

I'm just hoping that's the only one.

*sigh*

Posted by Red Monkey at 2:27 PM | Comments (2) | Blog | Stumble

November 5, 2005

Bluff on Fifth Street

Cancer.

No matter how many success stories like Lance Armstrong's that we hear, the word just terrifies most people. They'd rather turn away if it hasn't yet touched them directly.

This is not to say that they don't care or that they don't help out the local cancer society or Relay for Life when it comes around locally. They do care, but many of them don't understand that it's not CANCER every time any more. Sometimes it's just Cancer. Sometimes it's just cancer.

No one in my family -- that I know of -- has ever had cancer. I was just the "lucky" one. Actually, my family is probably lucky that I'm the one who got it because while I tend to get really ODD things (Hodgkin's is pretty rare -- only about 7500 new cases a year in the U.S.), I also tend to stubborn them out.

I was the kid in third grade who would get an asthma attack running the mile we were supposed to run in P.E. every week. I'd have to stop, take my inhaler (which were NASTY things back in the day) and then walk for a while. Then, being stubborn, I'd start running again, trying to catch back up. Repeat until the mile was run. And I never gave up on trying to do every physical activity, asthma attack or not. Went on to be a decent athlete in junior high and high school before my mom had finally had enough of "humouring" me and forced me to quit athletics.

You know how other people get a heat rash? Not me, so much. Instead, I get a cold rash. I am, according to my allergist, allergic to the cold. But cold is relative. It can be 65 degrees in the house and I'll start getting the rash on my fingers.

I get weird stuff. But I'm also stubborn enough and determined enough to say, yeah, whatever. So I got dealt some crappy cards ... you know what, I'm gonna bluff this hand and see what happens.

And I'm lucky enough and determined enough that so far, every bluff I've tried has worked.

What I don't get ... and what pisses me off to this day is this: I got the first chemo treatment I needed because my friends told me not to worry about the money. If it had been up to me, I would have tried to completely bluff the Hodgkin's (not knowing then that's what it was).

I was working full-time (even though the job was technically not classified as full-time -- this is a problem at a LOT of universities). I was working at the University of Notre Dame, a school that talks long and often about what a great family they are, how they take care of everyone in the family. But I had no health insurance.

I have seen them raise money for students in need. I witnessed them raise money for a staff member with throat cancer.

A few beloved professors of mine donated some money to me to try to help defray expenses -- and I want to make it clear just how incredibly grateful I am to Valerie (who organized it), Sonia, Seamus and those other folks who pitched in to help out.

The university did nothing.

Meanwhile, the local state school had an adjunct who fell ill. Yep, got one of the Cancers. The whole school ran fundraisers to try to help this guy out.

The hypocrisy of Notre Dame obviously still bothers me.

But it goes deeper than that. I was working full-time. I never stopped working through chemo. When I did land a full-time job the next year and then needed a bone marrow transplant, I only took one semester off teaching. I still went to work every day. I did all sorts of things for the department -- I worked my ass off for them.

But I didn't qualify for any aid programs, federal or local private. The Medicaid office told me if I would just quit working, they'd take care of all my treatments and I wouldn't have run up over $60,000 in medical bills.

Meanwhile, the doctor who I'd been going to with symptoms for two whole years? Still has a thriving practice in town. I got lucky that I went to Med Point. If I'd continued going to him, I'd have been dead in another month or two. If that long.

This is a doctor who is not allowed to practice in ANY of the local hospitals. This is a doctor who, when I tell his name to the local pharmacies, they all give me THAT look. "Him? Oh he's awful!"

So the local health practitioners know he sucks. But he's still practicing medicine?

Why didn't I sue him for malpractice and make him pay for my chemo bills?

Look, I'm not really the suing type. But, I don't have a medical degree. I don't know what was wrong with me, just that something wasn't right. I told him all the symptoms -- and they were classic cancer symptoms. He should have caught the problem. He failed to do so for two full years. He really ought to be liable.

I tried to open a malpractice suit.

No doctor in the area would agree to go on record about this man's medical practices.

They sent my files to Indianapolis.

Here's the catch in malpractice suits in Indiana. The malpractice has to affect your overall outcome. In other words, if his missing the Hodgkin's had affected my prognosis, I could sue. This guy missed it and let the disease progress to stage 4 (of 4 stages). It was bad enough that while the initial chemo helped, I relapsed within a year and needed a bone marrow transplant.

But, I lived. And Hodgkin's can be stopped even from stage four.

So, the doctors in Indianapolis agreed that this doctor was negligent in the extreme. But, because my overall prognosis was probably good, no lawsuit.

Never mind the fact that if he'd caught it earlier, we might have been able to get away with some radiation and a little chemo and been done with it. I probably wouldn't have been hospitalized and I probably wouldn't have had a bone marrow transplant.

Negligent, but not malpractice.

I hear all the time about these "frivolous" lawsuits against doctors and how we need to protect the doctors from the frivolous malpractice suits ... and I agree, in theory.

But I also think that patients need some protection from negligent doctors.

And I think that's it's criminal that so many people are forced to choose between their health and making a living. It's criminal how much some of these treatments are ... treatments that people need to have in order to just live.

But ... I don't know what the answer to the problem is. I'm not gonna pretend that I do. I don't think a completely capitalist health system leads to better health care for all. I know how U.S. doctors feel about socialized medicine. I'm not sure that's a great answer either. I know I like the concept better than what we have now ... that doesn't mean that in practice it will actually be a better deal.

I suppose the question that we have to come to grips with is this: do we have a right to quality health care? And when I ask this, I mean everyone. I don't mean just those people who can afford to go to the Mayo Clinic.

If I hadn't had health insurance when I needed the bone marrow transplant, I wouldn't be here today. The hospital flat out told me that if I couldn't prove I could pay for it, they would NOT do the transplant. I'd be dead.

I think I contribute well to society. I taught freshman writing at Notre Dame for nine years. For most of those years I got between $12,000 and $18,000 a year, with no health benefits. When I was hired full time, I started at $25,000. The last year of the four years I taught full time, I made a touch over $30,000. (The base pay was normalized my second-to-last year at $30,000.) For a college instructor. I was never making great money. Not bad money there at the end, I'm not really complaining.

But think about it for a minute. If I had a professional job and was making $12,000 to $18,000 a year with no benefits ... how many other people are in that boat? How many of them are not getting good health care because they can't afford it?

Why is it fair that an executive VP of a hardware company can make $100,000 a year and get great health insurance and great health care -- but a teacher gets, at best, okay health coverage and maybe $30,000 a year?

Again, I don't claim to know the answers. I'm just saying that I'm dissatisfied with the ones we have right now. We're not doing enough to fix this. And I think we need to.

I was lucky. Damn lucky. I tried to bluff on the fifth street and my friends called the game off and made me go to the doctor before I lost all my chips.

Who do we know who's trying to make the same bluff because there doesn't seem to be any way to call off the game?

How many of us out there have already lost all their chips because of this bluff?

How do we define fair when talking about a person's "right" to live? Is it a right? Should it be?

I don't know.

Think about it.

Posted by Red Monkey at 8:05 AM | Comments (0) | Blog | Stumble

November 4, 2005

November 4, 1968

Posted by Red Monkey at 6:11 AM | Comments (10) | Blog | Stumble

kicked ---> c (part four)

I had my ... let's say procedure ... done at the IU Med Center in Indianapolis. Absolutely great facility, but I have two bones to pick with them.

It just scares people when you call it a bone marrow transplant. Don't call it that. Really, what they did was to make my body produce more white blood cells and then they harvested them. See, in the white blood cells are some little stem cells ... essentially these are "young" blood cells that haven't decided what they're gonna be when they grow up. After harvesting my stem cells, they froze them and gave me some time to recover. (I didn't feel like I needed it, but it let me finish out the semester, so I won't complain.)

Then there was a 3-day stint in the hospital -- this was a preliminary "test" to make sure the chemo regimen was going to work. More recovery time.

Then the "transplant" that's not really a transplant. Back to the hospital. This time, they said "Prepare to be here for a minimum of three weeks and it will more likely be four or more weeks."

Holy crap. You mean I gotta stay in ONE LITTLE ROOM FOR THREE WEEKS????

Notice I didn't even entertain the notion that it might be longer than that.

So, I prepared. I brought a copy paper box full of video tapes. I brought a suitcase literally filled with books. I brought my computer and bullied them into getting me a temporary university email account. (Gotta have online access!) I brought a box filled with my hobby supplies. I brought the big-ass LEGO model of the Star Wars X-wing fighter. (It had like a 1000 pieces to it. At least. I thought that might take me most of a week.) We had to go to the adjoining Riley Children's Hospital and borrow a little red wagon to haul all my crap to the tiny hospital room.

Bone Marrrow Transplant = 3 days of intense chemo that I don't remember + wait for all my bone marrow to die from the chemo + get a transfusion of my own stem cells + wait until bone marrow regenerates from the stem cells.

That's it. That's not a transplant!! A transplant involves moving crap from one person to another. Liver transplant, kidney transplant, heart transplant. Bone marrow's a cake walk.

Beef #2
Dear GOD, but their food SUCKS!
(I know, people on chemo don't usually want food. I did. But their food was awful -- and they kept trying to feed me things that I was allergic to like green beans.)

I was outa there in under 3 weeks.
They said it was the easiest transplant they'd ever seen.

I just thought it was three weeks of boredom.

Another two weeks or so at home where I couldn't go out in public without a surgical mask. Then I was home-free. And, of course, I was up at work every day as soon as I could shed that stupid surgical mask.

Now when I tell people that I'm a cancer survivor, they're stunned. I'm still young(ish -- and I act younger than I am, most of the time). I don't have those haunted "survivor" eyes.

And when people who know about the Hodgkin's ask me in that peculiarly pensive way, "How are you?" I'm generally puzzled. I forget why they're concerned about my health.

I don't think about the cancer all that often. On occasion when I'm really tired or feeling a little bit anemic, I have a brief moment of wondering, but then it passes.

What the hell, I kicked it to the curb twice already. I think I've established my position on the issue -- Hodgkin's isn't wanted here.

Tomorrow .... one last post about attitudes toward cancer and health in general.

Posted by Red Monkey at 4:01 AM | Comments (2) | Blog | Stumble

November 3, 2005

The Big C - part three

So, in 1999, I had no health insurance, had been going to the doctor for two years with off and on symptoms and over Thanksgiving was hospitalized for what I eventually found out was Hodgkin's disease. Six months of chemo later, I was healthy ... and totally broke.

I had kicked the Big C. I now had a full-time job (with health insurance -- finally). I could get on with being a young 30 something. I was in my profession, I was well, the world couldn't get better.

My oncologist was really pleased with the way I took to the chemo and then he started giving me some more details.

When I was first diagnosed, he told me I was on the cusp between Stage 3 and Stage 4 (4 being the worst). The cancer was all through my body and likely had been for quite some time. Now he was admitting that I had probably been Stage 4. In fact, I think he was afraid at the time that the cancer was just too pervasive to respond to treatment.

Of course, everyone put it down to my attitude. I didn't think I had an "attitude" about the cancer.

See, in everything I had ever read about cancer and leukemia as a kid talked about people visualizing getting rid of the tumour or cancer. I never did any of that.

For me it was just a matter of course -- you get sick, you go to the doctor, get your meds, and get better. That's how things work. And, really, since I'd had allergy shots between the ages of 3 and 10, going in to the office every other week for a 2 hour chemo session just seemed like "grown-up" allergy shots. No biggee.

At a checkup in November -- a year after the diagnosis -- I mentioned to the oncologist that I had a sore spot at the joint between the leg and groin on my right leg. He examined it and said it was probably just scar tissue -- I'd had a lymph node that was so swollen the previous year that he felt sure the tenderness and small lump was due to scarring.

But, he wanted to be sure.

More testing. CAT scan -- yep, something's there.
PET scan -- definite "hot spots."

The Hodgkin's was back.

This time, the treatment was more serious. I'd had a relapse before a full year had been up (from the end of the chemo treatment). This was serious news. The prognosis was still good ... but this time I needed a bone marrow transplant.

I begged them to put it off until the end of the spring semester. They frowned. As it turned out, it took that long before they were ready for me.

But one of the hardest things I've ever had to do was to talk to my students and tell them that I might not be able to finish the whole semester out and that I would be having to go in for chemo. They were frightened, most of them.

I did finish out the semester -- took one week of chemo during spring break -- every day for four days I was there for about 5-6 hours. The fifth day was just 2 hours of plain saline drip. The second week-long chemo session took place a month later. Somehow, I talked the nurses into letting me start chemo right at 8 a.m., unhook in time to go teach -- drink lots of fluids during class -- and then come back to the clinic after I'd taught and finish up the chemo.

No one could believe that I would do that.

Why not?

I felt fine. Chemo didn't make me sick like it does a lot of people. I had a job to do. I had a responsibility to my students. Why wouldn't I go to work if I could????

At any rate, I finished up the semster and got ready for the transplant.

The cool thing is, bone marrow transplants aren't nearly so bad as they used to be. Sometimes they can even do them outpatient.

to be continued tomorrow ...

Posted by Red Monkey at 10:31 AM | Comments (2) | Blog | Stumble