I've put together 14 high-quality original podsafe instrumental tunes from my Penmachine Podcast into a CD album you can buy. It also includes a bonus data DVD with a bunch of cool stuff that isn't on this website. Find out more...
This is "Penmachine.com: April 2007," a page that archives an entire month's entries from my online journal. The latest material for that month is at the top. For my newest entries, visit the home page.
Carl at Navarik pointed me to last year's "Chasing the Cancer Answer" documentary on CBC TV's Marketplace program, and a recent update. Wendy Mesley, the host, was treated for breast cancer before producing the program (the banner photo is of her having a blood test).
I haven't watched it yet, but from the web summaries it does seem a little sensationalist. Nevertheless, it raises good questions about environmental carcinogens and the rising rates of some cancers.
One reason that my doctors didn't initially suspect I had cancer last fall was that, even though I had complained of various bowel symptoms, I hadn't lost any weight. I'd been pretty stable around 200 pounds (90 kg) for years, and still was.
Once I was diagnosed with colorectal cancer in early January, however, that changed. I had to clear out my digestive system for a colonoscopy, and had numerous other tests. I cleared things out again for minor surgery in February, which removed what turned out to be another hunk o' cancer lower down in my rectum. Then we moved into numerous scans, biopsies, and eventual treatment with chemotherapy and radiation, which I'm still undergoing.
The result is that I've lost close to 20 pounds (9 kg) since Christmas. Compare August 2006 on the left to April 2007 on the right:
That's nothing compared to how much weight I lost 16 years ago, in early 1991, when I first developed diabetes and was unaware of it. Since my body couldn't process carbohydrates for lack of insulin, it started consuming itself and going into a state of ketoacidosis, which is like a super-severe, involuntary version of the ketosis people induce in themselves when on the Atkins diet:
Frightening photo of Derek by Alistair, March 1991
Back then, I plumped up again just fine once I'd been hospitalized for a week, started taking insulin, and began processing food properly once more.
This time around, after losing the first 10 pounds precipitously through February, I've stayed reasonably stable around 183 pounds (83 kg) over a couple of weeks now. My appetite is still good, but it's smaller, and my body is doing lots of extra work during treatment. Plus my blood glucose levels have been out of whack, and I've been adjusting my insulin accordingly.
Once this course of radiation and chemo ends in late May, we'll see if my weight comes back up as I wait for more surgery in late June. After that, who knows? But it would be nice if my trousers fit properly again around my waist. Even the ones I bought a month ago are feeling loose.
CBC has an interesting short article on the last remaining territories of European colonialism around the world. Oddly enough, Denmark holds the biggest single chunk, because Greenland remains Danish territory. I didn't know it had such a cool flag either.
Once again, I slept most of the day today, so that's all I have to say for now.
The La-Z-Boy recliner on the left (super-duper plush, with motorized recline, variable speed and pattern massage, and heat) could be The Most Comfortable Chair Ever. If there's anywhere such a chair should live, a waiting room for chemotherapy treatment at the Cancer Agency is it:
Thanks to my wife for the photos, and to my parents for taking the kids overnight so that both she and I can crash out this evening and sleep in tomorrow.
Tell you what. Go over and join Virb now. It's where everyone will be next year after they've abandoned MySpace and Facebook, so you can get a good account name now—if you can find an invitation.
Just don't send me an invite. I have this thing about trying to keep my online existence stable, so if you link to something of mine, it will still be around in a few years. If I gave you my email address or ICQ account number in 1996, or my blog URL in 2000, it still works. I don't regularly create and abandon new blogs and podcasts, or delete them and start over. I like to have an archive that persists.
UPDATE: It didn't take me long. By mid-2007 I was on Facebook, and by the end of the year on Twitter too. I find them both useful now, largely because I know so many people there. But still no Second Life or Tumblr or MySpace. I haven't completely succumbed. Yet.
Sleepy weekend, okay Monday, horrible Monday night (abdominal cramps and no sleep at all), long day at the Cancer Agency, slept all afternoon and through the night, feeling like a normal human being again today.
It's almost completely unpredictable, but there you go. Right now I'm not inspired to go into my usual long writerly analysis of it all. So if I blog infrequently or tersely in the next few days or weeks, I'm just tired. Man, sometimes am I tired. And sometimes I'm not.
I notice that weekends are kind of a washout now. With IV chemo on Thursday and the end of the week of daily radiation on Friday, my body goes into recovery mode and I sleep and ache and generally feel crappy most of Saturday and Sunday. Yet here on Monday, while still pretty tired, I feel a lot better.
I tell you, though, the video iPod my wife got me back at the end of 2005 is probably the best, most extensively used gift I've ever received.
Thursdays are my intravenous chemotherapy days, as well as busy with the usual daily radiation and a meeting with my radiation oncologist, Dr. Ma, whom I met for the first time yesterday, even though he's been running my radiation care for several weeks now. Nice guy.
Last night was extremely weird. After late afternoon chemo, my wife and I had dinner at the local Cactus Club, including some genuinely awesome Szechuan beans, then I started to feel wiped out. I came home and was asleep by 8. I woke up a few times, one time ridiculously sweaty, another feeling like I'd been dipped in metal up to my chin (there's platinum in that oxaliplatin, after all). Felt pretty decent this morning, though.
Here are the past couple of days' worth of photos:
Yes. Absolutely. 100%. I agree. I wish everyone would stop.
Multiple pages are okay in something like this splash screen gallery. Not great, but tolerable. But snipping up short articles into insane, ad-laden page chunks with one or two paragraphs per page? Sucks!
Wednesday, April 18, 2007 - newest items first # 2:59:00 PM:
I woke in pain, and had a shower, which was a bit humiliating for reasons I won't actually describe right now—maybe later. But a visit to the clinic, some radiation, and a visit with Dr. Usmani got me some additional medicines (yes, more damn pills and suppositories), which so far seem to be helping.
One of those pills is morphine. Yup, morphine.
I just took some, but I can't feel it yet. I'm hoping to sleep well for the first time in some time. We'll see.
Poo talk today. Friday night I became constipated, which is one of the side effects of some of my medicines. I didn't really sleep at all. Saturday, after some medication, there was a relatively quick shift into something more like diarrhea. I slept almost all day while my wife took the kids out to their various activities. Last night was a bit better, but today I was still extremely tired, and did a lot more sleeping.
We went out for dinner with my in-laws, and it was good to leave the house. Now I'm exhausted again, but I'd say this is the best I've felt since earlier on Friday.
Weekends. Not so fun now.
I'm hoping for a better Monday, when radiation treatment resumes.
Web geeks are the only ones who'll care about this, but Digital Web has a great summary of the upcoming HTML5 and XHTML2 standards for creating web pages in the future, including why HTML5 is a better option. I sort of understood the issues before, but that article cleared it up for me.
Now all we need is some browser support for next-generation development technologies. If you don't build modern web pages, you might not even know that the basic coding infrastructure everyone is using is about eight years old, and could use updating for the way people want to make and use websites and web applications today.
Things are okay so far, one day further in. No nausea, no more butt pain than usual (i.e. I slept fitfully, but I slept), a little tired, no more sniffles. In about half an hour I take another dose of chemo pills, with lunch, then have radiation again just after 2 this afternoon.
No big plans for the weekend, except more of those pills. It would be really nice if I could sleep straight through the night, but that hasn't happened for a couple of weeks now. Otherwise, game on.
I've been emailing with a guy in almost exactly my situation, just begun chemo and radiation this week, but in a suburb of Paris, France. He's 48, and both he and his wife have been writing to me about their experiences. His treatment is a bit different, but it's useful to communicate with someone on a similar trajectory, even if he is in another hemisphere.
A decade ago, I used to use Nisus Writer as my primary word processor, in favour of Microsoft Word or other alternatives. Nisus Writer Express has been the only version compatible with Mac OS X for several years, and it's rather too limited for me to use regularly.
Now there is a new public beta of Nisus Writer Pro, and I'm going to check it out. After a quick installation it certainly looks good—clean, powerful, fast. But I'll have to try it out and see how it works. I have complained often enough about Word, even though I teach courses about it. Apple's Pages has its place, but like NW Express, it's rather limited as a word processor, and works better as a lightweight desktop publishing program.
I've also installed Google Desktop for Mac. I was reluctant to, but have heard that it works a bit better than Apple's fairly lame Spotlight search, and, most importantly, will search Gmail messages even while I'm not online. Now that is cool.
On the left, I'm sitting with my lovely wife, who stayed with me for the whole ordeal, which wasn't such an ordeal (in part because she was there). You can't see the IV tube hooked into my arm there, but in the next photo, on the right, you can see the only physical evidence of my procedure, a little band-aid on my arm where the IV went in. That still hurts, but not much.
But here's what those photos don't show, in chronological order:
Two stool softeners and some Extra Strength Tylenol.
A blood test.
An hour's worth of intravenous bevacizumab, that same monoclonal antibody I had a couple of weeks ago.
More than a gram and a half (1650 mg to be precise, taken as four pills) of capecitabine, the oral pill version of 5-FU, which is a traditional chemotherapy agent, wolfed down with an extremely delicious bacon-n-egg sandwich from the BCCA cafeteria.
A further two hours' drip of oxaliplatin, another, platinum-based chemotherapy agent.
Room-temperature water and hot coffee. (The oxaliplatin can make me very sensitive to cold drinks, and apparently I may have to wear gloves when taking something out of the fridge for anyone else. That's weird.)
A couple of minutes of very focused exposure to high-energy charged particles aimed at my lower back in six different individual blasts. I heard buzzing, but didn't feel a thing, though lying stock-still on the table was uncomfortable, as was knowing I was the only one in there while the machine was on—there's a two-foot-thick metal door between the waiting room and the treatment area.
A really excellent lunch at Earls (sorry for the annoying music). I had a cajun chicken caesar salad and more coffee. (Remember, no cold drinks.)
So far, I have not had to take the metoclopramide, which is another anti-nauseant I can have at home as needed, and which would apparently dope me up quite good. Maybe before bed if I need it.
Excuse me, but that's a lot of shit in my body right now. I know it's only the first day, but still, that's a lot of shit, and what's shocking is that I feel better than I did this morning—no bowel symptoms at all, no nausea, no real pain to speak of. I have a runny nose. That's my immune system reacting to a few of those drugs, I think, especially the antibodies and the immunosuppressive effects of some of the anti-nauseants. I'm tired (no kidding), but also kind of wired because some of the drugs are also stimulants and give me a weird buzz. The steroid has spiked my blood glucose, but I can control that with insulin.
The worst part of today? I dropped my laptop off a table in the bedroom here. But even it seems fine—no dents, and no weird behaviour either. It's posting this blog entry okay.
I waited a few hours to write this—12 hours since I started treatments this morning, and about five since I got home—to see if I had anything further to report. But no, all I feel is sniffly and, uh, weird. My body is definitely reacting, but rather mildly so far. I'm sure it'll get worse, but it's not a bad start. One more dose of capecitabine in about 20 minutes. Then bed.
I have more radiation tomorrow afternoon, and every weekday for the next month and a half, plus the pills every day including weekends. It's a nasty comparison, but remember those famous and awful photos of carpet bombing during the Vietnam War? That's kind of what we're doing to the cancer. Hopefully with more precision, and fewer civilian casualties.
I have another article in the current (May 2007) edition of Macworld magazine. It's like my last one, in that it has nothing to do with music. Instead, it's about using your FireWire (a.k.a. IEEE 1394) cable for networking—yes, like an Ethernet cable or Wi-Fi. Why? Well, it's faster, and it works even if your Ethernet or AirPort connections are busy or unavailable.
I'm also enjoyng the new Music and Audio specialty page at macworld.com (not influenced at all by their publishing my article above at all, nope, uh, no way). Lots of updates in the blogs, news items, features, and useful stuff, even if you don't have a Mac. It's in my reading list as of today, as is the Macworld Creative Blog, which mixes music stuff with other entries about graphics, video, and so on.
If there's any shorthand for how serious it is that tomorrow morning I start the full-on chemotherapy, plus radiation, it's this—my doctor has said to me that:
I should switch to white bread.
I should eat more red meat.
You won't hear your doctor suggesting those, I don't think.
The white bread is to avoid the irritation that large amounts of fibre can cause once my bowels are subjected to the various drugs and high-energy particle beams. The red meat is to help alleviate my anemia, caused by blood I've lost from my tumour (my first alarming symptom, back last fall, was blood in my stool).
Here's the other shorthand:
Some of those drugs I've been taking daily for awhile now (the insulin for 16 years, actually), while others I start tomorrow as part of my chemo regime. The photo doesn't include the two different drugs that will be injected into me intravenously over the course of three hours tomorrow, nor the radiation, nor anything I'm taking to help alleviate pain and discomfort, but which I didn't get from the pharmacy. (Alas, I have to lay off even the tiny drams of scotch, it looks like.)
So yeah, I'm nervous. Not for the procedures tomorrow, which will whiz by through the whole morning before lunchtime, but for what's going to start happening to my body after that. Still, it's better than what my body has been doing to itself for the past year, insidiously behind the scenes.
A couple of weeks ago I wrote down that my pre-chemo/radiation doctor's appointment was Wednesday, April 11, so I was all set to rest today then head in tomorrow first thing for that. But today the B.C. Cancer Agency called me and wondered why I wasn't there this morning. So I dug out my appointment card, and sure enough: Tuesday, April 10. I never double-checked, and felt pretty foolish.
Luckily, as usual, the BCCA people were very friendly and understanding and rescheduled me for tomorrow anyway. But I have to be there at 8 a.m. for a blood test, and since I haven't been sleeping all that well, getting up will be interesting. Even so, I'm glad to get things underway. My radiation begins at 11 a.m. the next day, Thursday April 12, so we'll start zapping away at the tumour.
Unfortunately, I will not become radioactive, and will gain no spidey powers. On the other hand, Spidey Rectal Powers from a radioactive butt are probably something the world could do without anyway.
This evening I ventured out of the house to meet up and share dinner and beer with DaveO, Scales, and KK+ in Gastown. The whole time I hardly hurt at all, and I took a good long walk around downtown afterwards too. There's much to be said for a good state of mind when dealing with pain.
I feel a whole ton better this afternoon. I won't beat around the bush here: until you have had some sort of intestinal condition, and perhaps rectal surgery, which occasionally has you clenching your teeth in bed at a late hour, you have no idea of the sheer joy of taking a great big dump.
Or two or three. Combined with a whole lot of sleep.
My wife is out with a friend all afternoon, and the kids have gone to hang out with one of their pals too. I had a 90-minute bath, which did its pain-relieving job this time. Now I think I will take a short walk in the spring air with my iPod and some hard-rockin' tunes. Rollercoaster indeed.
The most extreme pain I've experienced so far in my life was from an odd source. In the late '80s I had an ingrown big toenail on my right foot—several attempts to get it to stop growing into the flesh of my toe were in vain, so eventually a surgeon removed the nail entirely and killed the nail bed with sodium hydroxide, so I have had no right big toenail at all for almost 20 years. (Worry not: my feet were plenty ugly before that anyway.)
But while I still did have that nail, whenever I stubbed it, the pain would be literally blinding: my vision would shrink to a tiny tunnel and it would take all my effort not to fall over. I'm glad that doesn't happen anymore.
The pain I have now is different. Saturdays are busy round here, and today ended with a big 21-person Easter dinner at my parents' house (which is next door to ours). I ate too much rich food, and discovered that right now, with the bevacizumab and other medicines coursing through my bloodstream, that is a really bad idea.
I spent the last half hour of my time there lying down in the spare bedroom, then came home and had a hot bath. But that didn't have its usual analgesic effects, so I paced around in my underwear with a hot bag on my torso, then tried lying down. That didn't help much either, and I was starting to think I wouldn't sleep at all tonight.
Now it's after mdinight, and things have improved a little with time and the natural actions of my digestive system. The hot bag is doing its job better, and I at least feel like typing something on this blog and listen to The Police's "Ghost in the Machine"—a nice change from simply wanting to crease up my face and make the world go away.
In a way I feel kind of wimpy. My serious treatment, with the real chemo drugs and radiation, hasn't even begun yet. My wife has been through much bigger pain—childbirth, obviously, but even her large tattoo probably hurt more than this. Yet it's becoming a grind, and I know that, in some form, I'm in for months of it.
This next week we start injecting poison into my body to try to kill cancer cells, as well as aiming high-energy radiation at them too. What will I feel like then?
How about that? My interview with Priya Ramu on CBC Radio is the featured episode on CBC's BC This Week podcast. Here's the MP3 file if you'd rather get it from CBC than from me—that file includes a bit more introductory information from producer Craig Lederhouse.
Thanks to Melanie for the heads up. I subscribe to a lot of CBC podcasts, but that didn't happen to be one of them.
I'm a Mac bigot, in fact an Apple computer owner and user since 1982, before the days of the Macintosh. But I have lots of experience with other computer systems too, ranging from mainframes using punch cards and the TRS-80 Model I to Unix servers and modern Windows and Linux PCs.
I've never purchased a Windows box for myself, but that's not entirely because of my Macophilism—in part it's because I'm so familiar with the Mac environment, in part because if I needed a Windows box there was usually one at work or at my dad's house I could borrow, and mostly because using Windows is so often so damn annoying.
I hadn't thought about it much recently until I read an article (via John Gruber) by the Wall Street Journal's Walt Mossberg complaining about what it's like to start a brand new Windows computer for the first time. I'd forgotten about all the crapware most PCs include.
But I have noticed over the past few years, when Windows users see someone boot up a new Mac, they always—always, every time—comment on how friendly and pleasant the first-run experience is, with its soothing colours, clear questions, and (mostly) lack of attempts to entice you to buy more stuff. I'm not sure if they consciously notice the lack of crapware, but there's a definite vibe to the Mac first run that helps you enjoy the experience, whether you're geeky or not, Mac-head or not. It's a first impression that counts big time, so that even if you encounter some difficulties later—connecting to a wireless network or a printer, for instance—you're willing to cut your Mac some slack.
Conversely, every time I've had to set up a Windows PC, I feel like swearing, which is not a good way to start out. As Mossberg writes, "The first day of owning an expensive new gadget should be a pleasure, not a hassle."
Spring is on here in Vancouver—things are growing, temperatures are supposed to reach 17 today and 22 tomorrow.
How many more springs will I see, I wonder? I guess it's an inevitable train of thought. All my doctors are still talking about my upcoming treatments being curative—that the chemotherapy, radiation, new clinical trial drugs, and surgery will shrink and then remove all the cancerous cells in my body.
I certainly hope that's true. My medical team and I are doing everything we can to destroy it all, to purge it, to annihilate it. But there is a definitively non-trivial chance that won't happen, as well: that some cells destined to grow uncontrollably might remain inside me, and grow more, and require more treatment. And there is a chance that subsequent treatment won't work. Right now, there is a significant risk that I could be dead within five years, something I would never have considered a few months ago.
I don't expect that, not now, but I can't ignore it, however hard it is to write down. So when I experience something, like the first flowers of spring, I try to watch it a little longer, and maybe take some pictures.
Almost every medication I've been taking for the past week—the bevacizumab antibody agent I received by IV, Tylenol with codeine, and especially iron pills for anaemia—has a risk of conspiation. Plus reducing the fibre in my diet on doctors' orders (how often does that happen?) doesn't help.
So last night I hardly slept at all from the discomfort, and not being sure what was safe for me to do—even at this early stage in my chemo treatments, there are things I should avoid, and I had to wait until today before I could speak to the clinical trial nurse and find out—all I could resort to was drinking lots of water, making good use of the Magic Bag, and taking hot baths both right before bed and first thing this morning, even before 7 a.m. had arrived.
Those baths are still the best thing. As soon as I dip in, nearly any trace of pain goes away. But this morning that meant as soon as I dipped in, I came ridiculously close to falling asleep, comfortable for the first time in hours. Had anyone else been awake, I would have looked ridiculous sitting there cross-legged in a barely-filled tub, tap running full, with my eyes closed and my head lolling to one side.
If I could replace my bed with a nice bathtub, I probably would right now, even if it made my skin stupidly wrinkly. Pity that next week, once the radiation and the rest of the chemo starts, I'll have to avoid such temperature extremes. I'll enjoy them while I can. And I should get a bath pillow.
Back in January, when I first started putting information about my cancer on this blog, I appeared on CBC Radio here in Vancouver to talk about it. Today I'll be following up by appearing on the same show, "On the Coast" with Priya Ramu, about what's happened in the interim—which is (if you've been reading) rather a lot, and we're just getting started.
I have to try to remember to thank my employers at Navarik and the amazing people at the Cancer Agency on air for the help and support they've given me so far.
That's good for me, but it's not really fair to others either—cancer is a disease that gets a lot of sympathy. No one blames you for it. But if I were addicted to something, or clinically depressed, or had another condition that is still full of stigma, would I feel so comfortable blogging about it, enough to go on the radio? Probably not. And that's a shame.
Stop those stopped presses! Digital restrictions (or, euphemistically, "rights") management (DRM) has always sucked. Today's announcement that EMI and Apple will release higher-quality, DRM-free music for a slightly higher price at the iTunes Music Store ($1.29 instead of 99 cents) is great, great news, and what I hope is the first sign of the death of DRM.
Even cooler is that when the new tracks go on sale in May, there will apparently be upgrade pricing (only 30 cents, I hope) from your existing DRM-crippled EMI songs. I plan to budget for upgrading anything from EMI I've already bought from iTunes, and as soon as other labels make it possible I'll do that for them too.
In addition, since I've now sold out all physical CDs of my album, being able to offer the digital download from iTunes without DRM for people who'd like to buy my music there (and I hope it will be easy for me to do that) makes my day.
Yesterday was tremendously busy. After I got up and put on the super-comfy new Lululemon trousers my wife helped me pick out on Friday, she and I took our daughters to their first taekwondo class (although our youngest, feeling shy, just watched), then popped home before the kids took advantage of the nice weather and rode their bikes for an hour. Then their usual Saturday piano lesson.
Meanwhile, my wife spent the afternoon laying down new faux-wood linoleum flooring for my parents (to match what she'd already done for our house), and after that we all went out to dinner.
This morning I wanted her to be able to sleep in without too much ruckus in the house, so after falling for a couple of mild April Fool's jokes, I took the kids out for breakfast. While I felt great then, and the omelette was fabulous, when I got home I was tired, very tired. I slept for almost four hours, and I'm still sluggish-sleepy several hours after that.
I don't know how much of that sleepiness is a side effect of the bevacizumab dosage I received on Thursday, which is probably taking full effect now. That's because I'm still taking Tylenol 1 (and sometimes Tylenol 3) painkillers, plus iron pills to combat anemia, plus daily multivitamins, plus my usual insulin. I'm still in regular low-level pain from the cancer in my bowel—I don't think I can blame it on my February 20 surgery anymore. Did I overdo it yesterday? I don't know. I could have felt like this even if I'd spent the whole of Saturday at home.
And of course I'm worried and nervous about everything else that's to come. This isn't even the full-on chemotherapy yet, after all.
I really wanted to help my oldest daughter pick out some new glasses today, but I just couldn't wake up enough, so my wife took the kids instead. I hope I'm better tomorrow, but if not, I'll have to accept being sleepy. Damn this sucks, and it's going to suck more.