Derek K. Miller - Penmachine words music comment - Vancouver, Canada

Today I had a meeting with the trial nurse for my upcoming resumed chemo treatments next month, followed by a series of blood tests, an appointment with my oncologist and the nurse again, then a CT scan. In between, I had some time to kill, so I had lunch at White Spot, then took time to walk around the Fairview neighbourhood and experiment some more with high dynamic range (HDR) photography.

Here are the results:

For each photo, I set my Nikon D50 camera to take three bracketed exposures: one at the default exposure the camera estimates, one two stops darker, and one two stops lighter. Then I used Photomatix Pro on my Mac to assemble them into HDR images, then tone-map them into the pictures you see. It's fun.

Labels: art, cancer, chemotherapy, hdr, photography, software, vancouver

Of all the charity events out there, the Underwear Affair is now the closest to me personally, because it is, as Gillian notes:

...a run/walk to raise funds and awareness for cancers of the unmentionable areas: cervical, prostate, ovarian, testicular, colon, and other words I don’t say much on this blog despite having my mind in the gutter most of the time.

Kidding aside, I hear stories now and again of people who had some problem down there but were too embarrassed to go see a doctor, and how, in a way, they died of this embarrassment. So maybe it’s better to take the stigma out of talking about down there so that people will feel comfortable in seeking treatment for their problems and telling others about it.

Also, talking about butts is fun, everyone should try it. Especially in front of their mothers. At dinner.

She tells me that something like half of the funds she raised last year came from people who know me and my butt cancer woes. I find that pretty amazing, but maybe we can do even better this time? Go to her donation page and chip in.

The run itself is July 12, which is two days before I plan to start my next round of chemotherapy.

Labels: cancer, chemotherapy, exercise, friends, science

I've been absent-minded recently, in a different way than when I first got diagnosed with cancer last year. I regularly forget things, or misplace them, in a way I didn't before. Just in the past week, without noticing, I somehow left a tiny SD memory card with some important podcast audio on it sandwiched between a Nintendo Wii disc and the case for a different disc in our den. It took hours to find.

And in the past couple of days, I was searching endlessly throughout our house for my heavy-duty camera tripod, which I bought last spring. It's not small—about a metre long—and made of steel, not to mention being in a big green nylon bag. Not something you'd think would be easy to lose. But it turns out that, after taking it to the Vancouver Sun Run with my band in April, I packed it in the bottom of my drum bag, under a bunch of cymbal and drum stands. I didn't recall that at all, until I had a hunch this afternoon.

It's also not unusual for me to forget something right after planning to do it: taking out the trash, grabbing a book to return it to the library, finishing unloading the dishwasher. You could attribute that to normal aging, but I am only 38. My wife calls it "chemo brain," and noted to me that it (under the name post-chemotherapy cognitive impairment) is a well known condition among chemotherapy patients. Most of the research talks about long-term effects on memory, learning, and coordination after treatment, not problems during it, like mine.

Other memory conditions apparently benefit from mental exercise: solving problems and keeping your mind active. That's something many chemo patients might not do, especially if we feel shitty a lot of the time and (like me) are off work. But I think one thing that might help me keep ahead of chemo brain is the various activities I continue to pursue that require thinking. Things like music, podcasting, photography, even sorting laundry or emptying the dishwasher (when I remember to do that).

At least it's a good excuse to geek out. And a good reason to do chores too.

Labels: cancer, chemotherapy, family, home, memories

I've noted before how remarkable my wife is, both as a person and as a spouse. She's also amazing when I'm sick and when I'm not.

This week she had to deal with my being nastily ill once again: she not only shuttled me to emergency wards three different times and sat up with me there till insane hours of the early morning, but also kept the kids fed and clothed and schooled and loved, came to visit me with supplies (including some amazing lip balm), ran the house, went to work, and made sure everyone important knew what was going on with me.

I'm home now, but it was a gross week. After my overnight trip to Burnaby General Emergency (which wasn't too helpful) and visit to my oncologist (slightly more so), we went home. But I couldn't stay there. My intestinal pain got worse than ever (which is pretty darn bad), and we zipped down in the car to the emergency ward at Vancouver General Hospital instead—it is near the Cancer Agency, and has many more resources for handling both colon cancer and intestinal blockages.

I was at VGH for four days, and just returned home a couple of hours ago. During that time there was vomiting, lots of morphine injections, several X-rays, plenty of intravenous fluids, and no food or drink for the first couple of days. By Thursday things were improving. But man, overall it was brutal.

Now that I'm back on the couch in the house, I've decided to declare email bankruptcy for the week, purge my Gmail inbox (current count, 899 unfiled messages), and start over from scratch in the next couple of days. So if you emailed me recently, I won't reply now, sorry.

But I will get my wife some sort of nice treat in thanks for everything this week, that's for sure.

Labels: cancer, family, hospital, love, morphine, pain

My hospital visit a few days ago wasn't the last of it. I was back in Burnaby General's Emergency department last night once more, this time overnight. More harsh intestinal cramps (with bonus vomiting), almost certainly a sign of some sort of blockage, like the one I had right after my surgery last summer.

First thing today, my wife drove me directly from Burnaby Hospital to the B.C. Cancer Agency, where we met with my oncologist. He prescribed morphine and bed rest, and has me coming back tomorrow for some IV fluids. I'm home now, but I may get checked into the Cancer Agency ward for monitoring for a few days while my bowels rest up. I'm hoping to avoid another tube up my nose, but you never know.

At least this time my weight is back up, so if I lose a bunch of pounds I won't be skeletal.

Labels: cancer, fatigue, hospital, ileostomy, pain

I never thought I'd be so glad to hear fart noises.

Last week, I finished a round of chemotherapy (which started in October) and started a break of a few weeks during which I won't need to be at the Cancer Agency much, and won't be pumping my body full of poisons for a change. But cancer treatment has been fond of serving me curve balls: a post-surgical blockage, antibiotic-induced unconctrolled low blood sugar, a blood clot, and near zombie-like collapse from dehydration.

One week into my break, I landed myself in hospital again very early this morning. It wasn't a car accident or a bar fight or anything—rather, I went to bed at 11:30 last night with a bit of a tummy ache.

Which got worse, and worse, and worse, until I felt like there was a big gurgling gas bubble sitting sideways in my small intestine under my navel. The pain was enough that I didn't sleep at all, and by a little before 3:00 a.m. I had to wake my wife to call the Cancer Agency doctor line and ask what to do. They recommended heading down to Burnaby General Hospital Emergency, and forwarded my treatment history to BGH accordingly.

Here's the yucky part of the explanation, so be warned. I've mentioned before that I have a (hopefully temporary) ileostomy bag from my surgery last summer. That's like a colostomy bag, but connected to a different part of the intestine. In essence, last summer my surgeon snipped my intestines where the small one (the ileum) meets the large one (the colon), just to the right of my bellybutton, so that my colon could heal from the removal of my tumours.

The end of my ileum now pokes out a hole in my belly into the open air. (No, I won't show you any photos, but I will say that it is a reddish-pink little nub.) To catch the poop that would normally flow out the usual way through my colon, I regularly stick on a small, plastic, remora-like ileostomy bag, which I can empty every few hours, and which I change every few days. Most people who don't know it's there would never notice the bag under my shirt during the day, or might think I have some sort of geek gadget on my belt beneath the shirt hem.

The problem as we drove down to the Emergency ward at the ungodly hour of 3:30 a.m. (after waking up my parents and having them come over to keep an eye on the kids) was that my ileostomy bag was empty, which is not normal for me at that hour. I suspected, as I writhed around a bit in the passenger seat and cursed the slow-changing traffic light, that I had another obstruction in my intestine, which was preventing the food I ate yesterday from going anywhere.

As you'd expect, that doesn't feel too great. Fortunately, for once we found the BGH Emergency waiting room completely empty, and only had to wait about 15 minutes before I got a bed. The doctors and nurses gave me a couple of morphine injections, took blood tests and X-rayed my chest and abdomen, and let me lie down to rest.

I was able to get some sleep after the painkiller kicked in, and eventually the emergency physician let me know that there was nothing alarming on the scans (and no obvious large blockage), that my blood tests were within range for someone just off chemotherapy, and that nevertheless my small intestine seemed to be pushing food waste through more slowly than normal.

The treatment? Go home, stay on a soft and fluidy diet, and wait for the natural passage of whatever minor obstruction was causing my nasty gas pains. So we did that, arriving back just before the kids went to school, and I've slept most of the day as the pain and bloating have very, very slowly abated. I've been able to empty out the bag a couple of times, and just in the past half hour or so, my ileostomy has been making what I would normally consider annoying involuntary farting sounds.

Except now, for once, they're a relief. Thanks, intestines, for working once more. And thanks to my wife and family for shepherding me through this, again.

Labels: cancer, chemotherapy, family, fatigue, hospital, ileostomy, pain

Spring weather is coming, and with my new shaved head I'll have to remember to wear a hat and sunscreen—especially because chemotherapy side effects also mean I should avoid prolonged sun exposure.

More positively, my family has been looking at accommodations on B.C.'s Sunshine Coast for a weekend getaway, possibly sometime in June. We're the sort who avoid camping, and much prefer places with restaurants and perhaps a pool. There are a few such places up the coast from here, including Rockwater, Pender Harbour Resort (beware, flashy Flashness), the Sunshine Coast Resort, and the West Coast Wilderness Lodge (not really that much wilderness).

Does anyone have experience and recommendations for fun family places to stay between Gibsons and Egmont for a couple of nights?

Labels: cancer, chemotherapy, family, holiday, oceans, travel

I met with my oncologist, Dr. Kennecke, today. When I go to see him, I try to moderate my expectations. Pragmatically, I plan on the metastatic tumours in my lungs maybe having grown a little bit, or maybe shrunk a little bit, or maybe stayed stable. I don't go there thinking they will have miraculously disappeared, or that they will have grown dramatically.

And fortunately, that's pretty much where I am. Last week's CT scan showed that the largest of my four lung mets has grown slightly, but is still less than a centimetre across. A second one might also be a little bigger than before. The others seem like they're stable. So my chemo isn't eliminating them, but it appears to be keeping them somewhat at bay.

In the short term, I'm pleased with the other plans Dr. K and I worked out today. I have two more chemo treatments planned this month, the 15th and 16th of this round, which started back in October. Then, finally, I get to take a bit of a break through June, and with luck I might begin a clinical trial of a new artificial monoclonal antibody (more advanced than the Avastin I'm taking now), which may be able to enhance the action of the other chemotherapy agents, perhaps in July.

Having a few weeks off from chemo side effects will be nice. Maybe we'll take a weekend trip to Victoria or something. As nice things go, I'll take what I can get.

Labels: cancer, chemotherapy, holiday, travel, victoria

More chemo today.

I have to admit, this is getting pretty old.

Labels: cancer, chemotherapy, fatigue

I know celebrity magazines and tabloids have been around for ages (here's a scandal sheet from 1957), and I've certainly seen them in checkout lines at the grocery store since I was a kid. But lately they—and a lot of their fashion and lifestyle magazine and TV cohorts—are really pissing me off. I think there are a few reasons.

First of all, they've proliferated wildly over the past decade or so, both directly (more tabloid rags) and indirectly (celebrity gossip appearing in other publications that didn't used to carry it, as well as on countless indistinguishable celebrity hack TV shows). Yet based on what appears on the covers, you'd think there were only maybe two dozen interesting people (Angelina Jolie, Britney Spears, and Paris Hilton, plus people who associate with or resemble them) in the whole world. It's an echo chamber.

Second, I have two daughters approaching adolescence now, and I can see how the relentless repeated messages from these sources could warp their perceptions of what is normal. My wife and I continue to point out the distorted perspectives as part of teaching our kids media awareness, but it's a fair bit of work.

Third is my experience over the past year, specifically with health and weight. Between the beginning of 2007 when I was diagnosed with cancer, and the end of July, I lost over 50 pounds. It's taken more than eight months to gain it back, sometimes requiring me to eat more than I actually want to.

Beforehand, I thought that my stable long-term weight of about 200 pounds (91 kg) was a little higher than it should be, but nothing to be too concerned about. Now 200 pounds seems like a lovely, wonderful weight, a healthy place for me to be, even with all my new lumps and bumps and scars from my treatments and surgeries.

So looking at the shows and magazines that are obsessed with the tiniest weight fluctuations and skin changes in celebrities grinds my teeth. These are trivial, pointless concerns—and what annoys me most is that it's not only obviously what sells, but it also invades my brain when I don't even want it to. Why is there even room in my memory for whether one or the other stick-thin actress has a pregnancy "bump"?

The magazines occasionally find their way into our house. I have occasionally flipped through them, usually in the bathroom. When I do, it's a physically unpleasant experience, like my soul draining out of my body. Ugh, and now it's turning me into a stereotypical grumpy complaining blogger too. See how poisonous these things are?

Labels: cancer, celebrity, family, magazines, shopping, television

Now that I'm going to be on the radio, again, "Spark" host Nora Young has asked me to pick a couple of my blog posts that I can read out (at least an excerpt, if it's a longer entry) on air—one related to my cancer treatment, one not. I just did a quick skim through and found a few candidates.

If you have a bit of time, take a look and tell me in the comments which of each type you think might sound good on the radio:

Cancer posts

• Dead man walking
• Know your limit
• Bandages and partners
• Needle boy
• Braveblogging
• My least favourite part of town

Non-cancer posts

• "Crouching Tiger" would have made a better "Star Wars"
• Buying my dad a lens
• How a rotary phone is better than a cell
• Meeting up with the geeks
• My first toolbox
• Getting a good baby passport photo
• My daughter's cool glasses
• Can you make money from blogging and podcasting?

And of course, if you prefer something else I've written, let me know. Thanks!

Labels: blog, cancer, cbc, ego, geekery, radio

CBC Radio has two programs (also available as podcasts) that confuse me a little: "Spark" and "Search Engine." I like them both, but they seem to cover a lot of the same territory of life in the digital age. Sometimes I can't remember which one had a particular segment—was it host Nora Young at "Spark" who interviewed the guy who edits Hillary Clinton's Wikipedia entry? No, it was host Jesse Brown from "Search Engine."

I suppose it doesn't matter. I'm glad there's enough of an audience for my kind of techie social nerdity that CBC has two shows about it. Yay again to Tod for helping the network get on the podcasting train after jump-starting it with the CBC Unplugged show almost three years ago.

Anyway, I'm going to call "Spark" my favourite of the two shows now, because it looks like I'm going to be on it. Nora—that's her on the bike—indirectly heard about my recent talk on life, death, and my blog, and contacted me through Facebook (appropriately enough) to see if I might like to be on "Spark."

One of my weaknesses is appearing in the media. I've always loved seeing my name in print, or being on the radio or TV. So my immediate thought was, "hell yeah!" We'll likely record something next week for the "Spark" episode airing (and podcasting) at the end of the month. More details to follow.

Incidentally, Nora's other podcast, The Sniffer (not affiliated with the CBC), has been on my subscription list for a couple of years now. I recommend it.

Labels: blog, cancer, cbc, ego, facebook, geekery, podcast, radio

My hope that I wouldn't see a repeat of my chemotherapy vomiting from a couple of weeks ago didn't come to pass: last night I had one of those face-squeezing barfs that feels like it would come out my eyes if I could even keep them open. But it only happened once, then I felt a bit better, slept for hours and hours, and this morning was awake and feeling semi-decent by 8 a.m.

UPDATE: After a pretty good day overall, I puked again Friday night around 7, but it wasn't as bad as yesterday. I feel much better after that.

I also find that playing Mario Party 8 is a great distraction, even by myself. It's easy and random enough that I can't get too worked up about it, but it's fun and takes my mind off the various poisons coursing through my body until tomorrow afternoon. My wife and I might even try playing it again, without our daughters for a change. The kids take it a little more seriously than we do.

Labels: cancer, chemotherapy, nintendo, videogames

I spoke to the BC Branch of the Editors' Association of Canada a week and a half ago, about how I've integrated my online and offline lives since getting cancer last year. I've now posted an enhanced audio podcast of my talk, which includes my slides as part of the MPEG-4 file (24 MB, about 1 hour).

If you're subscribed to my podcast feed, you may already have the file on your computer or iPod.

Labels: cancer, meetup, podcast, writing

It took almost six months (or a year, if you count my previous treatments), but I finally hit one of those chemotherapy milestones everybody talks about.

Yesterday I had my 12th of what are so far supposed to be 16 treatments since last October. Then, last night, I barfed up my dinner. It's not the first time I've thrown up since beginning cancer treatment, but it was the first time caused by the chemo.

While overall, my side effects haven't been as bad as I might have expected, chemo does feel something like a slow, slow piledriver. Every couple of weeks, I get hammered down. And while my recovery time is pretty quick, each blow pushes me a bit further down. I finally decided to shave my head, for instance, because my hair was just shedding too much.

But, you know, my wife is making butter chicken for dinner, plus cupcakes for her and the kids. And today, I don't feel like I'm going to barf up anything at all. That's progress.

Labels: cancer, chemotherapy, fatigue

There are some pretty views from the Fairview neighbourhood of Vancouver, but it is now officially my least favourite part of the city. It's objectively far nicer than many other parts of this region, but that doesn't matter.

Part of my dislike comes from a job I had there back in the '90s. There was no backbreaking physical work or relentless tedium (I encountered those in earlier jobs, installing alarms and working night shift at a gas station, respectively), but it was still the worst position I've ever held, because the psychological environment of the place was positively poisonous. I would take the longest lunch hours I could, sometimes walking down to False Creek and sitting on a grassy knoll, just staring into the distance eating while trying to purge the stress from my system.

I quit after nine months, during which numerous coworkers had come and gone, some quitting after one day and others (including the person who hired me, who'd been with the company since it was founded) being summarily fired for often arbitrary reasons. I'm amazed I stayed so long.

But that's not the main reason. It's because Fairview is also home to the B.C. Cancer Agency, where I spend far too much time these days. Counterintuitively, the people there, from volunteers to doctors to nurses to technicians, are overwhelmingly wonderful, friendly, helpful, and understanding. The building is nicely decorated for a medical facility. It runs like clockwork—I've never had so many appointments with such complex interrelationships run so smoothly and on time, or been apologized to so profusely when things run late or get postponed.

And yet, it is the Cancer Agency, where I have gone for CT scans and radiation treatments and chemotherapy and emergency prescriptions of blood thinner injections. It's where my doctors told me that my cancer had spread to my lungs. True, Fairview is not where I spent the worst days of my life, late last July when I had lost 50 pounds, was hooked up to two IV poles in a ward at St. Paul's hospital, and could only lie in bed—not bathe, walk, eat, or even drink—for several days.

Yet somehow Vancouver's downtown West End, where those worst days did happen, still holds too many other happy memories, of fireworks and new love with my wife, and childhood walks in the park with my grandmother. Fairview is where I'm reminded, all the time, of how broken my body still is. Even driving through it on my way elsewhere, I feel queasy, my subconscious focusing on the nauseating chemical soup of chemo I get there every two weeks. Tomorrow is the next infusion.

Sorry, Fairview. I can't help it. You suck.

Labels: cancer, chemotherapy, ctscan, fatigue, linkbait, memories, radiation, surgery, vancouver

Alright, I finally did it. Off we went to the mall and I shaved my hair off!

The chemo wasn't making me completely bald by itself—but it was thinning and greying my hair significantly. The manginess and relentless shedding of my hair (in the shower and on our pillows especially) was getting really, really annoying. Plus, it's as good a chance as any for me to shave my head, which I've never done in my life. Here's a nice set of contrasting pictures:

2005


2006


2007


2008

I like it! And I look more like my podcast co-host Paul now (or maybe Yul Brynner) too. Your thoughts?

Labels: cancer, chemotherapy, paulgaray, shopping

I thought that yesterday's chemo treatment (which continues, with a bottle I'm hooked up to right now at home, till tomorrow) would be my second last for now. But it won't be. My oncologist Dr. Kennecke recommended yesterday that I take at least four more treatments, totaling 16 since I started in October, then perhaps move on to a different mix of drugs.

That's disappointing, though not a complete surprise. As I mentioned, my last CT scan was good, in that the blood clot in my lung is gone and the small metastatic tumours there have not grown. But that's the thing: the chemo is keeping them at bay. Taking a break as I was hoping to—in order to recover a little and have the surgery that can reconnect my intestines together (so I can poo normally, rather than into a bag glued to the side of my belly)—might risk letting the cancer grow.

And, reasonably enough, I don't want that.

So I've had to readjust my thoughts for this year. When will I be able to start work again, even part-time and from home? I don't know. Will we travel as a family this summer? Likely, but probably not far. Will the chemo keep working, and maybe shrink the tumours eventually? I sure the hell hope so.

I had hoped that the limbo I've been living in during the last five months of chemo—a somewhat sisyphean routine of three days of crappy, foul, vile side effects interrupting two weeks of feeling relatively normal while my hair thins and goes rapidly grey, my fingers get strangely discoloured and dry, and I see pink whenever I blow my nose—might change soon. But no, and I'm okay with that. Just okay.

If my hair gets any scragglier and thinner, I'm seriously considering shaving my head to match my co-host Paul (whose baldness comes more naturally). Fortunately, I've returned to essentially the same weight I was before this whole mess started at the beginning of 2007 (about 90 kg, or 200 pounds), so if I do that I shouldn't look too much like a cancer patient, especially since I still have my big bushy eyebrows.

More positively, my doctor also said I should start exercising regularly again: there's no hazard from my lungs, which seem to be functioning properly, and I've regained most of my strength since my worst state in the summer. I may even ride my bike around Central Park here in Burnaby soon, more than a year and a half since I last took it out. Those tires will need pumping.

So on we go, still alive. On on on.

Labels: age, cancer, chemotherapy, ego, paulgaray, surgery

It's been fascinating, if frustrating, to watch from the sidelines as the company I work for, Navarik, has done some amazing stuff over the past year. Most recently, they launched a new version of Navarik Inspection, our web-based application that helps petroleum companies keep a handle on the oil they're moving around the world.

That sounds like a pretty big deal for a small Vancouver company. It is. When people ask me what Navarik does, I use part of Navarik Inspection as an example. Here are the basics:

1. When an oil tanker pulls up to a terminal to load, the company shipping the oil wants to know, (a) how much oil gets pumped in, and (b) what the qualities of that oil are.
2. To confirm that, they hire a third-party cargo inspector who works near that terminal to check the various pumping measurements, and to take samples of the oil and analyze its properties, such as sulphur content, etc.—as well as to assess the state of the ship's tank, including (for instance) how much accumulated sludge is at the bottom.
3. Another inspector performs similar measurements and analyses several weeks later at the discharge port, where the oil is unloaded.
4. The information reported by the inspectors goes back not only to the shipper of the oil, but also potentially to a whole mess of other companies and people, often including the terminals, the ship's crew, the ship owner and operating company (which can be different), both the buyer and seller of the oil, various others involved in the transaction, and possibly government and regulatory agencies as well.
5. Each company receiving that information might do a bunch of stuff with it, such as passing it among various departments and through a bunch of computer systems for accounting, payment, analysis, and so on.
6. Especially with oil at record high prices, having that quantity and quality information be accurate is pretty important.
7. Until rather recently, a lot of the inspection reporting involved somewhat ad hoc systems of fax transmissions, emails, phone calls, courier shipments, and typing of the same information several times over into different computers at different places by different people—which risks delays and errors.

So, again, when people ask what Navarik does, I can go through the rigamarole above, and then explain how we've built a web-based software program that inspectors can sign into securely from any web browser on any computer (just like an online bank, or Gmail, or Amazon) and find out what shipments they've been hired to inspect. Then they can head down to the terminal, do their work, and come back and use that same computer (or a totally different one) to enter the reporting information, which goes directly over the Internet to the people who need to use it.

There's a lot more to it than that, obviously—mechanisms for other people to put together the lists of tests to be performed, procedures for nominating and contacting inspectors, information about ports and terminals around the world, thresholds for alerting people when inspection results are out of spec, and so on—but the overall result is that the whole cargo inspection process can go more smoothly. Information moves more efficiently and is more accurate, and people get paid quicker. And we have other web software solving similar problems for other companies too.

What I'm talking about here is a real web business—not one with a high profile and a shiny 3D glistening logo and a gazillion page views for a beta application with a questionable revenue model. Instead, Navarik is an under-the-radar company turning eight this year, with a few dozen very talented employees in a nondescript light industrial Vancouver building, adding a little bit of extra efficiency to the energy industry that keeps the modern world functioning.

For a business, that's a pretty good place to be. Navarik's founder, my friend Bill Dobie, will be speaking at the eLiberatica open-source conference in Romania this spring about it, and about how we use open technologies and standards that were built over the past decade for the Internet to make it happen.

I'm also hoping to be well enough again sometime later this year to help move it all along.

Labels: cancer, friends, money, navarik, web

Many months ago I said, about my cancer treatment, that I'm not brave, even though people say it. Bravery is facing danger head-on when you have other choices. Here have been my choices over the past year and a bit:

1. Potentially life-saving small surgery? Yes or no?
2. Potentially life-saving two-month radiation treatment? Yes or no?
3. Potentially life-saving early two-month chemotherapy? Yes or no?
4. Potentially life-saving large surgery? Yes or no?
5. Potentially life-saving late six-month chemotherapy? Yes or no?

The basic choice has been: Treatment or death? Yes or no?

That's a pretty easy decision.

My real choices have been pretty small, and the choice to blog (and appear on the radio) about all this stuff was also an easy one, because this was the question: Write about my cancer like I write about everything else, and keep the information flowing? Or live two lives, and try to remember whom I've told and whom I should be hiding stuff from every single damn day?

Why would I choose to keep it private? Given who I am, how could I possibly do that and stay focused?

I said in that radio interview and elsewhere that, as far as relating to other people goes, cancer is an easy disease. People don't judge me for it. (Perhaps if it wasn't colorectal cancer, but lung cancer from smoking or liver cancer from drinking, some people might judge me. But even so, cancer is no longer "the C word.") They're sympathetic, and cut me a lot of slack.

What takes some bravery is what fellow Vancouver blogger Corinna is doing at her site Gus Greeper: writing in painful, wrenching detail about her depression, anxiety, and therapy. And her trip to the hospital yesterday after she downed a handful of pills and some wine.

Depression and other mental illnesses still have a big stigma. They shouldn't. For someone who has never experienced them, like me, they are tremendously difficult to understand, but that doesn't make them less real. And let me tell you, until you've been close to or had cancer yourself, you don't understand it either.

Stay brave, Corinna. It's worth the fight.

Labels: blog, cancer, chemotherapy, death, depression, radiation, radio, surgery

Of course I would prefer if the small metastatic tumours in my lungs were gone or shrinking significantly. But they are stable, so this is still an encouraging report from my oncologist today:

Looks great, the pulmonary embolus [blood clot in the lung] has resolved! The [cancerous] spots in the lung are the same size... all good, cheers!

"Looks great" and "all good" are nice words from a cancer doctor, and it's very pleasant to be rid of the blood clot.

Onward. Damn right.

Labels: cancer, chemotherapy, ctscan

Beware: graphic blog post ahead.

Chemotherapy isn't something your body gets used to—the side-effect symptoms generally just get worse and worse as you proceed with treatment. While I've had it better than some folks since my current round began in October, this week—and today in particular—has sucked.

I finished my usual chemo dosage on Friday, but my recovery, usually pretty quick, was slower then normal this week. I had my delayed CT scan Friday evening, then went out for dinner, but yesterday, Saturday, I felt hung over all day, with a dull headache and fatigue.

This morning was a disaster. One of the potential side effects of some of the chemo drugs is late-onset diarrhea, something I haven't had in the four months I've been on this treatment. But I got it last night. Because I've had a temporary ileostomy bag since the summer, I don't have the urge to go to the bathroom. The bag glued to the side of my belly simply fills up, and I have to notice and then head to the washroom to empty it. I did that around 1:30 a.m.

But if things go badly, as they did today, the bag leaks. I noticed around 7 a.m. when it filled up again. I was able to leap out of bed, charged with adrenaline, and avoid making a big mess. After cleaning things off I got into the shower and prepared to put on a new bag, but while washing my hair and shaving, I suddenly felt like I was going to pass out.

Normally for me that would be a sign of diabetic low blood glucose, but after spilling test strips across the kitchen counter, I checked my levels and they were normal. Something else was wrong, and I felt cold fear. I stumbled into the bedroom, still dripping from the shower, and woke my wife as I lay down to keep from falling over. Getting horizontal, I immediately felt a bit better.

After assessing the situation and talking to doctors at the Cancer Agency, she discovered that fluid loss probably made me dehydrated and light-headed. Electrolyte imbalances likely gave me the hangover-like symptoms too. I've been drinking fluids and taking Imodium, as well as sleeping, all day since. I feel mostly normal now, but the headache is still there. My wife is having a nap too, because she was out late last night and didn't get enough sleep before I zombie-crashed her awake first thing today.

I hate having to put her and the kids through crap like this. It scares me too. I hope tomorrow is better.

Labels: cancer, chemotherapy, diabetes, family, fatigue, ileostomy, love

I was supposed to have another CT scan today, but the scan machine was broken, and the technicians were on the phone with GE, who make it, to try to find a resolution. My scan will be rescheduled.

Now there's some tech support I wouldn't want to deal with.

More chemotherapy tomorrow. Only two more treatments after that. As far as I know for now, anyway.

Labels: cancer, chemotherapy, ctscan, hospital

Sometimes I forget how sick I am. Not often, but on a day like today when the sun is shining and I have a week off from chemotherapy, when I can take the car in for service, then buy some groceries and take the bus home, make dinner, clean up, help get the kids to bed, and record a podcast, there are times when I forget the cancer.

At times like this, I have to remember what I've learned in the past year, which is to say no.

When I was healthier, I'd often get roped into (or rope myself into) projects that might be fun, or might benefit me or other people, or might even make me some money—but that turned out to be way more work than I expected. Or I'd end up saying yes to many little things that, individually, wouldn't take much effort, but collectively sucked up way too much of my time.

I can't do that now, and it has been a good lesson. During the rollercoaster of surgeries and radiation and chemo and weight loss and weight regain and wild swings in blood glucose and mood and physical ability since the beginning of 2007, I've simply dropped quite a number of things, sometimes with no warning. The world kept spinning, and the people who had to pick up the pieces did a good job, or made do without my contributions.

Seeing that, I've made myself a rule. When I get offered some freelance work or come across a volunteer project or a hobby activity that I might want to do—the kind of thing I'd have reflexively said yes to previously—I ask myself a question: if I'm well enough to do this kind of work, shouldn't I be ready to go back to my day job? If not (and so far, my answer has always been no, I'm nowhere near healthy enough), then I shouldn't take on anything big and new either. I shouldn't, and can't, juggle what I used to.

It's refreshing. I do smaller things here and there, and have managed to keep doing some activities I really enjoy, such as podcasting, playing with my band on occasion, and writing this blog. I do some chores around the house, hack around with computers, watch a bit of Discovery Channel, hang out with my kids and make sure they get to school in the morning, and spend time with my wife so I can look into her amazing blue eyes.

For now, in between all my medical appointments and such, that's plenty. And that's what I say yes to.

Labels: cancer, chemotherapy, family, fatigue, love, navarik, podcast

Last night I played drums in my first gig with my band since back before my cancer surgery in July. It went quite well, even though this particular lineup (Mark and Adam on guitars, Rick on bass, and Christian and I swapping drum and percussion duties in case I got too tired) had never played together before.

We set up at 4 p.m., finished that by 6, went out for dinner, returned and started the show by 10, finished at 12:30 a.m., and then packed up and hit the road by 1:30. However, as expected, after getting home at 2 a.m. and then running a bunch of errands after I got up today, I crashed out for a three-hour nap. My wonderful wife took the kids swimming while I was asleep. (Notice how, for two and a half hours of actual playing time, the band actually spent ten hours on call?)

It makes sense that I would be tired only a day after my latest chemo treatment ended. I'm certainly in no position to play as often as I used to, for the same reason I'm still on medical leave from work: my body is taking a lot of punishment from the cancer treatment, and is very slow to recover. I was sore all over today, as if I'd been skiing, and my hands in particular—which seem to be showing the brunt of the chemo side effects right now, with dry skin and strange discolourations—are particularly thrashed. (Part of that is that I've hardly played drums all year, so my usual callouses are gone.) I had to take off my rings today and have been slathering both of my mitts with moisturizing cream.

In fact, my hands somewhat resemble the heavily worn 1966 Fender Jazz Bass guitar that Rick, our bassist for the night, has owned since 1979. It's pretty much stock, with the same body, neck, pickups, and hardware installed at the Fender factory during the Beatles' heyday. Rick is the third owner, and the bass has always been his main instrument since he bought it, seeing thousands of performances. The sunburst finish is almost entirely worn through, front and back. There are actual grooves in the body from where the coin he uses as a pick has made its mark, but even more astonishing, Rick's fingers have very gradually dug channels into the wood over the years too.

Rick's bass is probably the most beat-up playable instrument belonging to any musician I know. It's quite beautiful in its own way, with the history of over 40 years of heavy playing (almost 30 of them Rick's) etched into its surface. It's a player's bass—some collectors would weep at its condition. Other people are happy to have Fender make them a brand new bass and then bang and bash and wear and scrape it up as if it had been played for decades. But as Doug (our other bass player, who has his own beat-up basses, both vintage and artificially "relic" treated) says, it's not the same.

Labels: band, cancer, chemotherapy, guitar, music

Once again, it is snowing crazily here in Burnaby. It seems like we've had many more days of snow this year than usual. I like it, it feels very Canadian here, but I can't go out and enjoy it.

That's because today I started my ninth chemo treatment (out of twelve total) in this cycle, which began in October and will finish at the end of March. I'll spend most of tonight in bed watching Iron Chef America and MythBusters. I'll probably also be lying down most of tomorrow.

If things go as they usually do, I'll be a bit better by Friday, and pretty much back to normal by Saturday, when I hope to play drums with my band for the first time since July.

But right now I feel just gross. Bleah.

Labels: cancer, chemotherapy, mythbusters, snow, television, weather

I haven't written all that much about my cancer treatment recently, but that's not because things are winding down. Rather, it's simply grinding along as it has since mid-October. Every second Wednesday I go to the B.C. Cancer Agency, take some blood tests, maybe see my oncologist, and then sit in a chair for a few hours while various chemotherapy poisons are fed into my bloodstream. At the end, I'm hooked up through the same IV to a "baby bottle" of 5-FU chemo, which I take home and keep on for 48 hours.

Two days ago was one of those Wednesdays. In a way I'm lucky to have been an insulin-dependent diabetic since 1991. Needles don't bother me. That was good on Wednesday, because in the morning I took two different insulin shots, then had blood drawn for tests, then took some more insulin with brunch, then got plugged into the chemo drip, then had an atropine injection to avoid some side effects, then took more insulin at dinnertime, then took two more insulin shots at bedtime, then finished off with my daily blood thinner needle.

So what's that? Ten needles in one day, some to take fluids out of my body, others to put them in. Whew. And I'm not even counting the finger pricks I do at least four times daily to test my blood glucose. Lots of people don't get that many needles in a year. Today I get the bottle taken off, which is always a relief. (I can't get my chest wet while the chemo is on because of the needle taped to my body, so my Friday post-unhook showers feel amazing.) This will continue until at least late March.

If you met me on the street, other than my increasingly-scraggly hair, you'd be hard-pressed to know I was a cancer patient until I told you. Or unless I let you examine my fingers and inner elbows and chest for all the needle and lancet scars. So it's pretty hard for me to forget what's going on.

Labels: cancer, chemotherapy, diabetes, pain

For kids who live in Vancouver, snow is a bigger treat than in much of the rest of Canada. While it does snow here every year, it tends to arrive when cold outflow winds from the B.C. Interior get overwhelmed by a warm wet front from the Pacific—so it may very well dump down and then melt almost immediately.

Several times over the past few weeks, therefore, I've planned to take the kids out sledding in the fresh snow, only to have the sky turn to rain and the ground become unpleasantly sloppy before we get the chance. But not today. It was just around freezing, but the snow was pounding down, so we packed up and went.

We were the first sledders today at our local park, which has slopes as steep as any ski hill. So my daughters were able to get a bunch of good runs in before they were wet and cold and we went home for hot chocolate and peanut butter sandwiches. Unfortunately, because of my current cancer treatment, blood thinners, ileostomy bag, and all that, I don't think sliding and bumping down the hill is a good idea for me, so I just watched and took photos.

Labels: cancer, family, ileostomy, park, sledding, snow, vancouver, weather

For some reason, when the chemo starts hitting me, I often find myself watching Iron Chef America on the Food Network. Although I'm usually nauseated, somehow the expertly prepared gourmet food still looks wonderfully appetizing. A recent Kobe Beef episode was particularly scrumptious (probably because I'm a bit anemic and have been craving red meat).

Semi-related to that, I don't often write songs with words, but every once in a while something comes to me. Here's what the Food Network led me to write last evening:

Sometimes I feel like I've been drinking
Even when I haven't beem drinking
Baby, I swear I haven't been thinking
Of anyone but you
And Nigella Lawson
In the kitchen
With a spatula
And a blowtorch
For the crème brulée

We'll see where that goes.

Labels: cancer, chemotherapy, food, music, podcast, television

Today's the one year anniversary of the day I first heard my cancer diagnosis. Back then I thought that, even though it was cancer, it was likely early stage and relatively easy to treat.

That was wrong, as I discovered quickly. While today marks one year since my diagnosis, I started counting my treatment last January 31, which means I'm at something like Day 341 now, and far from completing even this round of chemo and other drugs. Whew. I thought I might be away from work for two months—it's now been eleven.

Still, the news has recently been encouraging, since my metastatic lung tumours seem to be responding reasonably to my current chemotherapy. My doctors and my efforts to look at my cancer both optimistically and pragmatically, as well as amazing support from my wife and kids and others in my life, have kept me alive for a year.

Even though I've received gifts of lots of very fine scotch whisky this year, right now I can't drink any alcohol without feeling like crap, so that stuff will have to keep.

Labels: anniversary, cancer, chemotherapy, ego, surgery

I got my haircut yesterday in the midst of my cancer rollercoaster, so I was away from home all day. My daughters stayed at my parents the whole time, and when I got home, my oldest said, "Daddy, did you lose all your hair in one day?!"

I told her no, it wasn't from chemotherapy. I just got a haircut. But I have noticed that there is now a band of grey hair across the back of my head, from temple to temple, that wasn't there last time I got a short haircut a few months ago:

Labels: age, cancer, chemotherapy, ego, family

Here's what I wrote, hurriedly, on Facebook and Twitter earlier today:

CT scan good: lung tumours either stable or "noticeably smaller." Alas, small blood clot in lungs, must take blood thinner needle daily now.

Let me explain that. This morning, I talked to a social worker in the patient counselling department at the B.C. Cancer Agency, as I do about once a month, just to get things off my chest. I was having a CT scan later in the day, which would be the first test in several months to see whether my current chemotherapy round is actually killing my cancer. I felt mixed about that, not knowing what path my life would take in the next few months, even more so as I prepared to give a speech at my friend Martin's memorial service on Sunday.

The scan itself was uneventful, and I didn't expect to hear any results until Tuesday, when I next see my oncologist Dr. Kennecke. So my wife and I drove back to Burnaby. The chemotherapy has started to thin my hair, which isn't falling out in clumps, but is shedding some in the shower, so I decided to get a short haircut again in case that gets any more pronounced. After that, my wife went to find some shoes and I had a snack at the food court.

While I sat at the table, my phone rang. I expected my wife, but it was Dr. Gill, another oncologist from the Cancer Agency.

"The CT scan found an incidental blood clot in your lung," she said.

Oh shit, I thought.

"Are you having any trouble breathing, or chest pain?"

I wasn't.

"That's good. We'd still like you to come back to the Agency this afternoon, so we can start you on some blood thinners. How soon can you be here?"

It was 3:45. I said around 4:30.

"I'll see you as soon as you arrive."

I called my wife. She freaked out a little. I called my dad, who was watching the kids. He sounded calm, but I knew he'd also be freaking out a little. Back into the car, through traffic, at the Cancer Agency by 4:30.

A nurse immediately took us aside. "Take this form up to the lab for some blood tests right now. You can also take this prescription to the pharmacy down the street and get it filled immediately. Then come back here to Station C and Dr. Gill will see you." In a flash we were back at the elevator, blinking and stunned, my wife to go the pharmacy and me for my blood tests. We were both back within 20 minutes, when Dr. Gill met us and explained what was going on.

Some of the chemotherapy agents I'm taking, particularly Avastin, can lead to bleeding and blood clotting. I've noticed that in places like my nose. Turns out it's happening in my right lung too.

So now we have a new drug in our cupboard, a series of syringes of anticoagulant (blood thinner), which I must inject subcutaneously, the same as I have done with insulin for the past 17 years. I'll do that once each day for the next six months or so. The drug will help prevent the clot I have from growing, and should help keep new ones from forming. I will also bleed and bruise more easily as a consequence.

The good news is that Dr. Gill also told us about the main result of the CT scan, which is that the metastatic tumours in my lungs have not grown. Indeed, some are stable, while others are "noticeably smaller." So the chemo is doing something, which is the whole damn point. While obscured by our alarm about the blood clot, that is the kind of news I've been waiting to get for a whole year.

The nurse who came to show me how to administer the blood thinner (it's so similar to insulin injections that I was very comfortable with the procedure right away) also listed off some of the possible side effects, but said, "These probably won't be a worry for you, because you're young and healthy."

I laughed. People like me with stage 4 metastatic colorectal cancer don't apply the word "healthy" to ourselves too often. But that was also good to hear.

Labels: cancer, chemotherapy, ctscan, hospital, therapy

Some good things happened in my life in 2007. My kids took their first trip to Disneyland, and at the same time I made my first visit to the NAMM Show next door, which is like Disneyland for music geeks. I saw finally saw The Police in concert. My wife threw me a great birthday party. One of my best friends became pregnant with her first child, due in February 2008.

But otherwise it's been pretty rough. Back in January 2007, I first got my cancer diagnosis, and since then I've had four surgeries (one major), two rounds of chemotherapy (the second one is half-way over now), six weeks of daily radiation treatments, and almost a month in hospital, during which I dropped down more than 50 pounds below my normal weight.

To top it off, the year ended with the deaths of my mom's longtime friend, world figures Oscar Peterson and Benazir Bhutto, and my friend Martin, whom I'd known for more than 20 years. All role models, all flawed in their ways.

NOTE: I've now set up a memorial page for Martin, including links to articles about him, copies of the notes from his eulogy speakers, and photos from his memorial event on January 6, 2008.

And yet. And yet.

I have two very different yet wonderful daughters now approaching adolescence, and a wife who is by far my best friend and confidant. I have faced death and, so far, beaten it back. I have things I yet want to do, but also know that if I don't get to do them, I'm satisfied with what I've already accomplished in my life.

I'm glad to see 2007 gone, no doubt. I'm more optimistic now to see the end of 2008 than I was at some times during this past year. I'm surprisingly clear in how I see my place in the world. That's something of a gift.

Next Sunday there will be a memorial for Martin, who did not see the end of this year. I've been asked to speak briefly about his modeming and BBS days. One thing I know of him is that he was always trying to find new ways to have fun, and to be happy.

In my mind, we all have our lives and our families and friends, and we each must try to be happy, because they are all we have. Happy 2008 to you.

Labels: bbs, cancer, death, family, friends, geekery, holiday

I've been wondering how to write this blog post all day, or whether to do it at all. But it seems silly (not to mention out of character) to avoid, so I'll just see what comes out.

UPDATE: This post originally had "1970-2007" in the title, which was wrong. I knew that in my head (Martin was born before me, in 1968), yet his Facebook profile said differently, and I used that. Details are easy to screw up. I've corrected the title after a note from our friend Johan.

I've also now set up a memorial page for Martin, including links to articles about him, copies of the notes from his eulogy speakers, and photos from his memorial event on January 6, 2008.

I heard this morning via a phone call from my good friend Simon that one of our mutual friends, Martin, died early in the day on Christmas Eve. While I didn't see much of him these days, I had known Martin for more than 20 years, since our days as BBS geeks in the early 1980s. We first met in person at Vancouver's Expo 86, at least a couple of years after I'd met him virtually online. He showed up at Expo with a shock of blonde dyed into his dark hair, and a Super 8 film camera with which he was making strange little time-lapse movies of everything he saw.

I can't confirm what details I've heard about his death, so I'll avoid repeating them in case anything is incorrect. His last Facebook update, from a week ago, talked about the snow on one of our local ski hills, from which he'd just returned. So his death seems to have been quite accidental, and certainly unexpected. While over the years it has happened to a few people I've known who were roughly my age, Martin is the first friend of mine to die, as far as I can remember.

He was a talented engineer who had recently "retired" (in his mid-30s) after making a bunch of money when his video game company was bought out. He seems to have spent much of his time since then DJing and organizing raves and other events. Maybe he'd spent some time riding freight trains, at which he was also an expert. Both of his parents and his daughter, now a young adult herself, have survived him.

Years ago Martin and I used to take mountain-biking trips together in the backcountry around Greater Vancouver. Engineer that he was, he brought the topographic maps (this was pre-GPS), and he was always hard to keep up with. We traversed the logging roads between Squamish and Indian Arm. He witnessed my worst-ever case of road rash, where I took a downhill on a logging road too fast and ended up sliding down the gravel on my side.

I've thought a lot about death this year. Having stage 4 metastatic cancer will do that. What's particularly strange about it is that Martin hosted a party for me on in June at his fabulous condo high up in a Yaletown tower, a few weeks before the big surgery that put me in hospital for most of July, and from which it took me months more to recover.

Yet here I am, still kicking, feeling as good as I have in all of 2007 despite my ongoing chemotherapy, and Martin is suddenly gone.

I haven't cried yet, but I still may. I came close when I saw my youngest daughter sprawled out asleep in bed as if she'd fallen from the ceiling, and it reminded me of Martin's daughter doing the same at a party about two decades ago. Mostly I distracted myself in a lazy post-Christmas day with my family watching TV (including a whole slew more of MythBusters), and late tonight I've been listening to a bunch of blues, plus the amped-up blues that is the latest White Stripes album. Jack White's Ph.D.-level guitar distortion helps draw the sadness out and cauterize it a bit.

Part of me feels it slightly unseemly to write this, since I'm not sure it's what his family and closer friends would want. Yet I hope they don't mind, because not writing it wouldn't be right either, like a hole in this blog—always a very personal place for me—where something important should be.

I'm not one to speak or write to the dead, as many are doing on Martin's Facebook page. I don't think he's anywhere to hear me anymore. I'll simply say that, as little as I saw Martin in recent years, I miss him with his twinkly eyes and off-kilter funny techie stories. I know many other people who surely do too. Together our memories will preserve what was best about him.

Labels: bbs, cancer, death, friends, geekery, memories, music, vancouver

This week was my fifth chemotherapy treatment of this cycle, which should end in the spring after my twelfth dose. I spent Wednesday evening, all of Thursday, and yesterday morning in bed. Friday afternoon a nurse at the Burnaby Health Clinic removed the bottle I wear for a couple of days, and I immediately started feeling better.

The timing works out well. It's two weeks till the next treatment, which means I'll be feeling pretty good through the crazy Christmas season—we have parties and events every day from the 20th through the 25th. Still a little bit of shopping to do too.

While I'd love to play with my band up in Whistler for New Year's Eve, that will take place right after my next dose, so there's no way it will happen. I'll just be here at home, and probably fall asleep well before midnight.

I'll certainly be glad to see the end of 2007, I tell you.

Labels: cancer, chemotherapy, holiday

Last night was the Christmas party for Navarik, the company I've worked for since 2003, and for which I had the occasional contract in the three years before that. Several of my college colleagues founded it in 2000—a web software company started just as the web software bubble collapsed. It's about the same age as my younger daughter, or this blog.

Early on Navarik was the leanest of self-funded startup companies, with a tiny office where people were nearly stepping over each other and everyone could go for lunch around one table. Last night I looked around and realized that it is no longer a startup at all. The many employees who have been there nearly from the beginning are now seasoned veterans (with far more experience than, say, the folks who run Facebook; Navarik itself is several years older than Flickr and WordPress). We've brought in more seasoned veterans over the years to help run the place.

Pointedly, Navarik has hired more new people since I went on medical leave in February (and thus with whom I've never worked directly) than formed the entire company when I started. Some of them I'd never met until last night. Back in 2003 only a couple of us in the office had children; in the past two years there has been a substantial baby boom, enough that we're having another Christmas party next week, just for all the kids.

The business we do is not flashy or high-profile, though it requires considerable skill and intellectual effort. We help some very big companies move important, money-making information around. Our website needs updating to reflect what that means in 2007 (that's one thing that's not getting done while I'm away), but it is fundamentally the same vision that Bill, the company's founder, had while working in the marine bulk shipping industry in the late 1990s.

I'm itching to get well again and return to helping make that vision real. I joined Navarik more than four years ago not simply because my friends started it. Rather, I saw a company built on new technologies and ideas, created for the Internet, that could show important worldwide industries how to do better than the clumsier old world of traditional information technology.

That's not Web 2.0 hype, but a real business. And a strong one, I think.

Labels: cancer, holiday, navarik, software, web

As often happens in Vancouver,