Penmachine

Today I heard something I've never heard before: "your tumours have shrunk." Through all the many different varieties of chemotherapy and radiation and immunotherapy and experimental Phase 1 drug trials I've put myself under during the past three years, only surgery has ever knocked my cancer back. Everything else, at best, kept it at bay.

Until now. Of course this is good news—but that's all relative. The tumours I showed you back in September are still pretty big, but they are measurably smaller than they were in November. And that includes the new ones that had just appeared in the fall. So I still have cancer, a lot of it all over the inside of my chest, but just a little less of it than I did a couple of months ago. As I wrote to some friends, I'm not out of the woods, but at least I'm no longer sinking slowly into quicksand either.

Thus, this afternoon on the way out of the cancer clinic, my wife Air and I smiled a little, held hands, and bought some flowers to put in the house in celebration. Later on we had takeout sushi with the kids. And tomorrow I go back in for more chemotherapy, which I hope will continue to beat the shit out of those metastatic growths.

So I'll be a sleepy, nauseated lump of crap for the next three or four days. A bit of good news doesn't suddenly make things go easily, you see.

Labels: cancer, chemotherapy, love, news, vancouver

This month, February 2010, marks three fricking years since I first went on disability leave for cancer treatment. (And, incidentally, since we got our Nintendo Wii.) This got me thinking about all the jobs I've had in my life, starting back when I was still in high school.

It turns out that I've worked for 13 organizations, if you include my own company when I was freelancing. I did not enjoy every job, but each taught me something:

In the late '80s, I also helped my friend Chris install alarm systems in people's homes and businesses, but while I got some money from it, it wasn't quite a job in the same way. It was more like when I helped him repair cars and resell them around the same time. Though in those cases, I did learn that I dislike crawling around in fibreglass-filled attics running wires, and that I'm not too fond of all the grease, gunk, and rust involved in auto work either.

Labels: anniversary, band, cancer, editing, ego, memories, navarik, neurotics, nintendo, wii, work, writing

I had another CT scan today, to see whether my current chemotherapy is doing any good to slow or reverse or do something to the ever-expanding tumours in my chest. I'll find out the results, and what that means for my chemo regimen, next week.

In the meantime, following my most recent chemo treatment last weekend, the side effects continue. A relatively new one is that if I haven't eaten for an hour or two, the first thing I pop in my mouth causes the salivary glands on either side of the back of my tongue to ache as they kick in. I can almost feel them pumping. It's not really painful, just bizarre.

And there is the endless fun with my digestive system. Last night I was in the bathroom for nearly an hour, then, when I thought I was done and was brushing my teeth to prepare for bed, suddenly my GI tract decided things needed to clear out from the other end as well, and I puked into the sink.

Next, to top it off, the sink clogged. I stared at it in disbelief for a moment, then searched our closets for the plunger at 1:00 a.m.—and I'm sure glad it worked once I found it. Very pleasant, I must say, especially in my chemo-nauseated state.

I didn't sign up for this. But at least I'm alive to complain about it, and I have a wonderful sleepy wife and puppy to keep me warm once I do get into bed tonight. They should help me sleep very, very well.

Labels: cancer, chemotherapy, ctscan, family, pain

Today is exactly three years since I found out I have cancer. I had it longer than that, at least since the spring of 2006, but that's when I knew. Three years of hell, total hell. So, another cancer post—but that won't be all I write here, just as it hasn't been since January 2007.

Chemotherapy is weird. Not the concept of it, really, which is pretty simple: poison your body with chemicals that try to poison cancer cells more than healthy cells. But being on chemotherapy is weird.

Every combination of chemo drugs is targeted a particular variety of cancer, and every person gets different side effects depending on the drugs and on our own physiology. I've been through numerous rounds of different types of chemo in the past three years. The stereotypes of nausea, weight loss, and hair falling out are true—all too true in some cases, such as when I barfed up my entire breakfast yesterday morning—but they are not universal. I've only had to shave my head once (so far), for instance.

But most chemo regimens have a variety of other, much stranger side effects too. There was that brutal acne I had a couple of summers ago, for instance. The warnings to avoid anything containing grapefruit or starfruit in other instances (though oranges, lemons, limes, and other citrus were fine). Strange black lines developing in my fingernails. Sensitivity to sunlight. Lots of bizarre and nasty intestinal side effects that sometimes had me in the bathroom for three or four hours at a time. And so on.

This time around, I have several different oddball side effects at the same time:

• My skin is remarkably sensitive to cold. On Christmas Eve, some of my family went for a walk for about 20 minutes. The weather was just around the freezing mark, and I was wearing a hat, gloves, and a scarf wrapped around my face. But when we got back to my aunt and uncle's house, the tip of my nose and my fingers felt almost frostbitten, burning until they warmed up. I have to be careful simply taking cold drinks out of the fridge.
• Speaking of which, I can't drink cold liquids either. For instance, I had some orange juice out of the fridge last week. No one but me in our house likes juice with pulp, so I was surprised when this one was full of pulp. Except it wasn't—my mouth and throat were reacting to the cold and making it feel like the drink was full of globs of pulp, even though it was clear. Then it hurt.
• The knuckles on both my hands are dry and the skin has darkened. When I put my hands palm down, they have stripes of brown pigment across the fingers.
• Cuts and bruises take longer to heal. I drew blood during some Ikea furniture disassembly more than a week ago, and it still hurts as the scab seals up.
• I have nausea, but other than when I'm actually on the chemo, it's wildly unpredictable. That breakfast I lost yesterday? A minute before I vomited, I felt fine. Same a minute later. And one of the only things I can eat no matter how I feel is Cheese Pleesers—those extruded cheese puff snacks.
• Then there are my feet. They're not exactly sore, but my soles are extra-sensitive, almost as if they have blisters on them. Sometimes. Most often I don't notice it, but I can't stand having a bathmat in the tub when I shower because it irritates my feet, and I wear socks pretty much all the time otherwise, even to sleep.

There may be more symptoms coming, I don't really know. But it's weird. And exhausting.

Labels: anniversary, cancer, chemotherapy, pain

I've mused about death often enough on these blog pages, especially since I developed cancer in 2006 and it spread into my lungs since 2007, and now that it's gotten worse. I've also discussed my atheism and how that affects my attitude about death.

Some people think that without any belief in an afterlife, or a soul, or Heaven, death for me must be a scarier or emptier than for those who believe in such things—that somehow I must face death without comfort or solace. But that's not true. I have tried to explain it before, but yesterday blogger Greta Christina did a better job. She calls it "the difference between pessimism and realism," and it's worth a read, whatever you believe.

Labels: cancer, controversy, death, religion

Okay, I'm back. I slept almost solidly for three days after chemotherapy, and right now I'd say I'm feeling about 60%. Maybe less. It depends on how well the Gravol is working at any particular moment.

My mom made some soup, and I think I will eat it now. End of report.

Labels: cancer, chemotherapy, family, food

I'm back in the world of the living again. It was a pretty rough weekend, I tell you. I had chemo like this back in 2007 and 2008, but I don't think I had all three of these chemicals (oxaliplatin, leucovorin, and 5-FU) all together previously, and the infusion bottle I had from Friday to Sunday at home also dispensed more of the 5-FU in it than I'd received before, so I was getting a larger dose than I'd encountered in earlier rounds of chemo.

So, in short, it suuuuuucked. I didn't actually throw up, but I basically doped myself up with prescription anti-nauseants and Gravol so that I slept most of the weekend, and felt like death when I was awake. I was out of commission and useless to my family for three full 24-hour days at least. It was only this morning that I felt anything like normal again, so I'll rest today and may get back to some sort of functional life until I do it again in a couple of weeks.

Chemo is no fun, that's for sure. I recommend avoiding cancer just so you can not have chemotherapy, entirely aside from all the other reasons.

Labels: cancer, chemotherapy, family, pain, sleep

Today I saw my oncologist to find out about my next round of cancer treatment, but even before that, the chemo ward called me yesterday and said they'd had a wait-list cancellation. My first appointment tomorrow is, Friday, at 2 p.m.

So by tomorrow at this time, I may feel like throwing up for two or three days (or not—some new anti-nausea drugs are now available). On the other hand, I'm ready to get the hell started. This regimen is similar to some of the chemotherapy I've had before, so I have a decent idea what to expect. Unfortunately, it's not much fun.

I'll post more information as soon as I feel like it.

Labels: cancer, chemotherapy, fear

I found out yesterday that there are new cancer tumours in the centre of my chest—several of them, each 2 to 3 cm in size, near where my lungs meet. They showed up on the CT scan I had Monday, and they were not there on the scan in September. That means they've grown quickly, which is fucking bad news.

After meeting with my doctors at the B.C. Cancer Agency yesterday, I've stopped using cediranib, the drug that had kept my existing lung tumours growing only very slowly over the past year. I'll likely return to more conventional and aggressive chemotherapy again sometime in the next couple of weeks.

Since I found out about my cancer almost three years ago, it has never been in remission. Some people who read this blog or know me in person have, mistakenly, thought otherwise, because I've often appeared in good health.

But my cancer has never shrunk, only slowed down. It started in my large intestine, then spread to my lungs from there. The bowel tumours came out with surgery in 2007—otherwise I would probably have died later that year. But the lung metastases can't really be tackled with surgery or radiation, because there are too many, too widely spread, and too deep in my body. Chemo is the best option.

This is serious. Faster-growing metastatic tumours near my lungs, my heart, my trachea, and my esophagus are dangerous and potentially lethal. In addition to attacking them with chemo, in a few months there may be some clinical trials of MEK inhibitor drugs available to me, but that's not certain. Those experimental medications operate on the kinase cascade metabolic pathway that helps cancer cells grow. So we'll see about those too.

New, fast-growing cancer is not what anyone wants in my body, but I can't say it's unexpected, or a genuine surprise. This is how cancer often goes. Treatments work, sometimes better, sometimes worse—and then sometimes they stop working. It's always a fight, and one I might lose.

My wife and children and parents and family and friends are sad. My head is swimming with thoughts of all sorts. Time to walk into the unknown future again.

Labels: cancer, chemotherapy, death, family, fear, friends, pain

Last week, reporter Theresa Lalonde from CBC interviewed me at my house about how people can plan for what to do with their online presence after they die. The TV video report is now online, and soon I'll post the audio radio versions she did as well.

The topic is similar to a much longer interview I had with Nora Young at CBC's "Spark" last year. There are basically two components to the whole enterprise: figuring out which online activities of yours to shut down and how, and figuring out which ones to keep going and how.

Labels: cancer, cbc, death, radio, television, video

It took a little over ten days, but we found ourselves a puppy! (I've posted a short movie.)

We've called her Lucy. She was born around August 25, 2009, and is half shihtzu and half toy poodle, making her a shih-poo, or, as I prefer the term, shpoo. Housebreaking Lucy appears to be the first challenge, but she has adjusted to our house and family shockingly fast otherwise. She is also surprisingly quiet for a little dog, which is nice.

She even kept me company in the bathroom during one of my bouts of intestinal side effects from my cancer medicine today.

Oh yeah, I also finally got an iPhone yesterday. But it doesn't seem like a particularly big deal now.

Labels: cancer, family, home, iphone, pets

I've been a little sick this week. Not with an infection, but with what I think are side effects both from my cancer medication and from the H1N1 and seasonal flu shots I had last week. My right arm, where the H1N1 vaccine went in, is still sore like I've been punched. I've had periodic mild fevers all week, I've slept a lot, and the intestinal symptoms I usually have are more pronounced than usual.

I assume it's the combination of side effects that have made me a bit more ill, but it's hard to know. My cancer is growing very slowly in my lungs, but it's not shrinking. So I can expect that eventually it, or the effects of long-term therapies, or both together, will make me weaker and give me more pain. I don't think that's happening now. I expect and hope that as my immune system builds antibodies to the two flu strains (something that takes a week or two), I'll perk up a little.

I can't be certain. I always have some fear that a new weakness or pain I develop won't get better. The fear itself can be tiring, either at its usual low level or when it flares up. But that too is something I've become used to. Fear, like pain, like fatigue, comes and goes.

Some other things, I have discovered, do not. They stay. Love is one.

Labels: cancer, chemotherapy, fear, love, pain

Today my parents flew to Frankfurt for a couple of weeks in Germany. They're staying with friends in Bad Zwischenahn, as well as visiting some of my father's relatives in Berlin, where he was born and lived until 1955. They had enough airline points to travel First Class, which I don't think they've ever done before.

Their trip is shorter than they had initially planned. My parents live next door to us in our duplex, the same house where I grew up, and they offer us a lot of support, especially with the kids, and particularly since I've been ill over the past few years. I told them a few weeks ago that their initial trip seemed too long to me. It was hard to admit that—I'm 40 years old and don't like having to depend on my parents again.

Yet it wouldn't have been fair not to ask. I have a lot of side effects from the cancer medications these days, and while we can handle not having my mom and dad nearby for a week or two, longer than that is likely to put a lot of pressure on my wife, and my daughters, when I'm not feeling well.

The three of us, Mom, Dad, and I, drove to the airport today, and had a fancy lunch in the Fairmont Hotel overlooking the jetway. I dropped them at the gate, then walked around the airport a bit and watched the planes some more. Then I drove home and spent an hour in the bathroom, as happens these days.

I'm sure they'll have a fun trip, and I'm glad they could go. I'll be happy to pick them up when they return too.

Labels: airport, cancer, europe, family, travel

I've never owned a dog, not even as a child. I've had fish (we have them now), and back in the early '90s, my roommates and I had a smart black 24-toed cat named Guildenstern, who died too young and is buried in the back yard. But never a dog.

We're probably going to get a dog. It has to be hypoallergenic, since my wife Air is allergic to most furry things. But our experience with a couple of friends' dogs (including dogsitting Podcast Puppy) has shown us that a few breeds, usually poodle crosses, don't set off her immune system.

I've always been reticent to adopt a dog because our family likes to travel, but with my cancer, I can't and don't travel very far these days, and with my wife at work and the kids at school, I'm often home by myself. The right dog would make a good companion for me, and get me out of the house more. I need that. And most dogs seem to like me. Plus caring for a dog is something new to learn.

I've warmed considerably to the idea. We visited some puppies today. It probably won't be long. I'll keep you posted.

Labels: cancer, family, home, pets, travel

Derived from the same CT scan of my body taken a few weeks ago is this 3D movie, also made with the open-source OsiriX software:

You can clearly see my portacath, which showed up just as well as my ribs. Freaky.

Labels: cancer, chemotherapy, ctscan, geekery, photography, science, software, videogames

Here, take a look at this extremely cool and scientifically amazing picture:

That's me, via a few slices from my latest CT scan, taken at the end of September 2009. I opened the files provided to me by the B.C. Cancer Agency's Diagnostic Imaging department using the open-source program OsiriX, giving me my first chance to take a first-hand look at my cancer in almost a year. Before that, the I'd only seen my original colon tumour on the flexible sigmoidoscopy camera almost three years ago.

I've circled the biggest lung tumours metastasized from my original colon cancer (which was removed by surgery in mid-2007). You can see the one in my upper left lung and two (one right behind the other) in my lower left lung. There are six more tumours, all smaller, not easily visible in this view. I'm not a radiologist, so I couldn't readily distinguish the smallest ones from regular lung matter and other tissue. Nevertheless, now we can all see what I'm dealing with.

These blobs of cancer have all grown slightly since I started treatment with cediranib in November 2008. To my untrained eye, the view doesn't look that different from the last time I saw my scan in December of that year, which is fairly good as far as I'm concerned. Not as good as if they'd stabilized or shrunk, but better than many other possibilities.

Labels: cancer, chemotherapy, ctscan, geekery, photography, science, software, video

It's Sunday night and I'm not sleepy. Well, I am, but I can't sleep, don't really want to yet. Everyone else in the house is down for the count until morning. I've always enjoyed this time, taking me back to being an only child alone with my thoughts—except my wonderful wife is breathing beside me in bed, which is much better, and endlessly comforting.

But tonight's not happy, or sad. It just is. Every day is a fight. Every. Fucking. Day. And every night too. Not a fight with a person, but with my own cells, useless greasy tissues that don't belong where they're growing in my lungs. I never know how much of my pain and fatigue is from them, and how much from the punishing medicine that slows the rate of cancer cell division inside me.

I spent a lot of this weekend in the bathroom. I don't know if that's a pattern yet, or just a rough few days of side effects. (But not as rough as some have been.) I cooked a pretty nice tikka masala dish tonight, and my wife brought home a lemon meringue pie for dessert. Our dinner with the kids at the kitchen table was my best part of Sunday.

Sometimes, like now, I don't want to sleep because I don't know what I'll be like when I wake up. Will I feel better, worse, the same? I can't predict, but at least I'm confident I will wake up. Will I sleep well, and rise rested, or toss and turn? Or will I be in the bathroom again, perhaps for hours? I don't really know.

I try to live day by day, but you have to plan something, even if your plans fall through. I have a few plans for tomorrow, and maybe I'll get to some of them. Or at least one. Or, just maybe if tonight goes poorly, none. These are my days and nights, more than three years after I developed cancer, and almost three years after I found out about the first (but not the worst) of it.

A fight. Every. Fucking. Day. And night. And more tomorrow. Time to sleep now, I think. To be ready.

Labels: cancer, chemotherapy, family, fatigue, pain

I played the gig last night at the tony private Shaughnessy Golf and Country Club, covering percussion, some drumming, background vocals, and (the first time for a performance that long) rhythm guitar. I was a bit of mess—my health was fine, but the three instrumental roles, plus singing, include lots of mental and physical gymnastics, so I usually felt like I was scrambling along a bit behind the others. I did okay, and I had a lot of fun.

It was also the first time this particular band lineup had worked together. We have another show next Saturday, and I expect I'll do a bit better, particularly since I'll improve my sense of what I should play on different songs. I also think a week is about the right amount of recovery time. Thanks to Jeremy, Dave, Rose, Sebastien, and Christian for having me sit in for these two Saturdays. It's been a nice break during my ongoing cancer-treatment nastiness.

Labels: band, cancer, friends, music, vancouver

It's a bit weird reading Say Everything, Scott Rosenberg's book about the history of blogging. I've read lots of tech books, but this one involves many people I know, directly or indirectly, and an industry I've been part of since its relatively early days. I've corresponded with many of the book's characters, linked back and forth with them, even met a few in person from time to time. And I directly experienced and participated in many of the changes Rosenberg writes about.

The history the book tells, mostly in the first couple of hundred pages, feels right. He doesn't try to find The First Blogger, but he outlines how the threads came together to create the first blogs, and where things went after that. Then Rosenberg turns to analysis and commentary, which is also good. I never found myself thinking, Hey, that's not right! or You forgot the most important part!—and according to Rosenberg, that was the feeling about mainstream reporting that got people like Dave Winer blogging to begin with.

Rosenberg's last book came out only last year, in 2008, so much of what's in Say Everything is remarkably current. He covers why blogging is likely to survive newer phenomena like Facebook and Twitter. And he doesn't hold back in his scorn for the largely old-fashioned thinking of his former newspaper colleagues (he used to work at the San Francisco Examiner before helping found Salon).

But then I hit page 317, where he writes:

...bloggers attend to philosophical discourse as well as pop-cultural ephemera; they document private traumas as well as public controversies. They have sought faith and spurned it, chronicled awful illnesses and mourned unimaginable losses. [My emphasis - D.]

That caused a bit of a pang. After all, that's what I've been doing here for the past few years. It hit close to home. Next, page 357:

For some wide population of bloggers, there is ample reason to keep writing about a troubled marriage or a cancer diagnosis or a death in the family, regardless of how many ethical dilemmas must be traversed, or how trivial or amateurish their labours are judged. [Again, my emphasis - D.]

Okay, sure, there are lots of cancer bloggers out there. I'm just projecting my own experience onto Rosenberg's writing, right? Except, several hundred pages earlier, Rosenberg had written about an infamous blogger dustup between Jason Calacanis and Dave Winer at the Gnomedex 2007 conference in Seattle.

The same conference where, via video link, I gave a presentation, about which Rosenberg wrote on his blog:

Derek K. Miller is a longtime Canadian blogger [who'd] been slated to give a talk at Gnomedex, but he’s still recovering from an operation, so making the trip to Seattle wasn’t in the cards. Instead, he spoke to the conference from his bed via a video link, and talked about what it’s been like to tell the story of his cancer experience in public and in real time. Despite the usual video-conferencing hiccups (a few stuttering images and such), it was an electrifying talk.

Later that month, he mentioned me in an article in the U.K.'s Guardian newspaper. When he refers to people blogging about a cancer diagnosis, he doesn't just mean people like me, he means me. Thus I don't think I can be objective about this book. I think it's a good one. I think it tells an honest and comprehensive story about where blogging came from and why it's important. Yet I'm too close to the story—even if not by name, I'm in the story—to evaluate it dispassionately.

Then again, as Rosenberg writes, one of blogging's strengths is in not being objective. In declaring your interests and conflicts and forging ahead with your opinion and analysis anyway, and interacting online with other people who have other opinions.

So, then: Say Everything is a good book. You should read it—after all, not only does it talk about a lot of people I know, I'm in it too!

Labels: blog, books, cancer, gnomedex, history, review, web

My last post (and the delay since I wrote it) emerged from worry and fear—which was perfectly reasonable, but has abated today. I'll explain.

A couple of weeks ago, while my wife Air and I were at Gnomedex in Seattle, I took a break from my current cancer medication for a couple of days to avoid nasty intestinal side effects during the conference. That's nothing unusual: I do the same every month at some point. But this time, as my digestive system slowed down, I got some strange pains in the middle of my back during the night. They kept me awake until I discovered that sitting up in bed reduced them, and I could sleep. They disappeared once I resumed the pills (and the poopfests that result).

But the pains came back, more frequently, sometimes waking me up in the night, or keeping me from getting to sleep. Eventually they appeared during the day. The feeling, sharp and deep, reminded me of the bowel blockage I had last year, which landed me in hospital for a few days—only (luckily) about 10% as painful this time. But nothing was blocked, believe me. And that lack of blockage provided regular relief, as the pains moved around and then went away, to come back another time.

Having pain that came and went, but always started just below where I know there are tumours growing (slowly) in my lungs was—needless to say—disconcerting. Fearsome. Perhaps even terrifying. So I was nervous when I visited the B.C. Cancer Agency today for my regular monthly checkup.

But two doctors and a nurse all think, given my long-winded explanation of what was going on and how the pain behaved, that it's a fairly simple digestive problem, likely treatable with something as simple as Maalox Plus and, at most, some Tylenol with codeine. My intestines have certainly been through the wringer over the past couple of years, and there could be adhesions or scar tissue in there—or they could simply be misbehaving because of what the cediranib I'm taking now inflicts on them.

Anyway, there's no reason to think it's the cancer getting substantially bigger. My kidneys aren't failing. There's no blood clot or heart attack going on. So now, while I'm uncomfortable some of the time, the pain is no longer terrifying. Behold the power of comforting words.

Labels: cancer, pain, surgery

I've come to realize something in the last few days. My cancer treatment drags on, keeping me alive but not really getting me better. I continue to manage my diabetes and live with an artificial IV port in my chest. I take lots of pills and shots, get medical tests, and see doctors all the time. I can't safely travel very far.

More to the point, I hurt, and I'm tired. Many parts of my body simply don't work the way they're supposed to. Most of the time, I'm nothing close to genuinely well. I may never return to my great job. I've been like this in some form or another for more than two and a half years.

So here's what I realized. I'm a 40-year-old man whose body has become much older. I'm a youngish guy in an oldish container. There are plenty of people three decades beyond my age—including my own parents—who feel better than I do, and can do more. And the hard part (for all of us) is knowing there's a good chance they'll live longer than me too.

For the vast majority of human history, living to age 40 was an achievement in itself. Even a hundred years ago, Type 1 diabetes like I have was a death sentence too—I would have died in my early 20s, before I had a chance to marry my wonderful wife or have two great children. I'm glad I've had those chances.

If I were (for instance) 75 years old now, it would be easier to accept what cancer has done to me, and to acknowledge that living (for example) another five years would be a pretty good achievement. I'm trying to think more like that—not to be fatalistic, but to be pragmatic, to know that while I'll keep fighting, without radical new treatments or some very good luck, it's probably a losing battle. But that's not a failure.

I'm sitting on the back porch in the sun, drinking a coffee. In a few minutes I'll help my kids make some cake. It's a good life.

Labels: age, cancer, death, diabetes, family, navarik, pain

Gnomedex 9 ended several days ago, but I needed to think about it a bit before writing my overall impressions. Each year (I've been part of five Gnomedexes now) has a different vibe, and this one was a bit hard to pin down.

It was certainly less confrontational. For whatever reason, none of the previous web-heavy-hitter attendees—Dave Winer, Steve Gillmor, Sarah Lacy, Jason Calacanis, Mark Canter, Doug Kaye, Adam Curry, et. al.—was there this time, which made for less high-level arguing (or grandstanding). And while many of the sessions were fascinating, I didn't get my mind blown the way some of last year's talks did to me.

I think, perhaps, it was not quite as inspiring, but more fun. Notes and quotes:

• "Anybody still use Second Life? One person? How's it workin' for you?" - Chris Pirillo (At Gnomedex 6.0 in 2006, Second Life was the Current Big Thing. Not anymore.)
• "Sock Summit is Gnomedex for sock knitters. Thousands of women—and one guy —descended on Portland." - Beth Goza (Something I didn't know about knitters: they go on "yarn diets" to stop spending money on new yarn, i.e. fight the addiction.)
• "If anyone here is a mathematician, I made this up!" - Micah Baldwin
• "We're not geeks, but we're really really trying hard to be." - Leah Nelson
• In a brief appearance onstage, I mentioned a photo of the planet Mercury my dad took in 2006, and an Astronomy Picture of the Day of the International Space Station taken in a similar way.
• Mark Horvath said that, "The average homeless person is America is nine years old." But it didn't take long to find out that's not true. Regardless, the story of James (who isn't nine, and who came onstage too) was compelling, and we raised some money for him.
• The un-seeable space of the Internet makes us all astronaut-style cyborgs in its space, according to Amber Case. And these days, you break your cellphone and you say, "Crap, now I can't hear all the way to Egypt at the touch of a button anymore." Also, "People have enough trouble with driver's ed right now, so, uh, jetpacks?"

I was also glad to have a hug with Drew Olanoff, who was diagnosed with cancer only three months ago and has turned it into a worldwide fundraising effort already. I Blame Drew's Cancer that I didn't manage that when I found out about my cancer in 2007.

On our last night in Seattle, Air and I spent the dinner hour pounding open steamed crab legs with little wooden hammers, then had a drink and watched the Moon set behind a sailboat at our hotel. The next morning as we left the hotel driveway, we saw this:

I'd say it was worth going.

Labels: cancer, conferences, friends, geekery, gnomedex, seattle

As of today, August 19, 2009, my wife Air and I have been married 14 years. As on our wedding day, the weather was Amazing Vancouver Summer last evening, our Anniversary Eve: mid-20s Celsius, sun glinting off the water. The kind of weather which impels people to spend thousands of dollars to visit. We went to C Restaurant on False Creek, where we'd last dined exactly three years ago, just before our 11th anniversary.

You know that "in sickness and in health" thing? Don't take it lightly—we've had more than our share of that seesaw over the past decade and a half. Even yesterday, it was touch-and-go whether we'd have to cancel our reservation.

You see, I was tuckered out after moving some of the kids' furniture all afternoon, and feared the onset of the dreaded chemo-induced Jurassic Gut. But with the help of some medicine, the prospect of an excellent and relaxing meal, the sheer fabulousness of looking at my wife, and a lot of willpower and positive thinking, I not only made it downtown, but was symptom-free throughout dinner and the whole trip home. (And then everything got rolling once we returned, but I won't give you details...)

The restaurant provided some little extras for us: custom chocolate script on our dessert plate, plus post-dinner ice wine on the house. We spent a leisurely two and a half hours eating wonderful, creative seafood, and we held hands to look out across the water, making occasional snarky comments about passersby on both land and sea. When we told the waiter we were celebrating 14 years, he asked, "Did get married when you were teenagers?" That's a nice compliment, since we were both 26 back then.

Air and I have been happy and sad, content and afraid together. I'm not as strong or healthy as I used to be, and I'm greyer and far more scarred and broken. But I am proud to be her man, and I'll do my damnedest to be here for as many more anniversaries as I can.

Labels: anniversary, cancer, chemotherapy, food, love, oceans, restaurant

A couple of days ago, I woke up and looked at my clock radio, reading 1:22. That surprised me—I didn't think I'd slept in till well in the afternoon. But it turned out I was just at a funny angle, and couldn't read the top of the first seven-segment digital numeral. It was actually 7:22 a.m., so I went back to sleep and woke up a couple of hours later instead.

Then there was today. My current cancer medication causes somewhat unpredictable intestinal side effects. Last night included some of the worst. I was in the bathroom from midnight until just before 2 a.m., then again from 4 to 6, then up and down every half an hour or so until at least 9:30 a.m. In other words, I had perhaps three hours of sleep before morning.

So, when things had calmed down enough, I feel asleep again. Guess what time I woke up? 1:22 p.m., for real this time.

Labels: cancer, chemotherapy, fatigue, pain, sleep

This is a re-post of the guest entry I wrote for Raul's Blogathon on Saturday.

Here's a story. Two years ago this week, I weighed 145 pounds, about 70 pounds less than I do now. I looked like I'd been in a PoW camp, pale and skeletal. I'd just left St. Paul's Hospital, where I'd been for close to a month after major cancer surgery and an intestinal blockage.

By October I'd gained back 30 of those pounds. Within a year I'd taken a bunch more chemotherapy, lost my hair and grown it back, and had terrible chemo-induced acne. A year after that, the cancer is still here, but I'm fighting it, and I feel pretty good. End of story, for now.

We all grow up making stories—when we're kids, we call it playing, whether it's using an infant mobile or a video camera. And our stories are best when we make them for others, or with them. Unfortunately, many of us become unused to playing, thinking it childish. We grow up terrified of giving speeches, or we write our thoughts only in diaries instead of for reading. We become shy.

For whatever reason, that didn't happen to me. I've been passionate about many things in my 40 years—computers, photography, public speaking, music, making websites, writing and language, science and space, commuting by bicycle, building a life with my wife and family—but when I took at them all, each one is really about making stories for others. Or, as my wife succinctly pointed out, about showing off. I'll admit to that.

Some examples, in no real order:

• Helping put together a school newspaper in sixth grade (or high school, or university).
• Donning a smoking jacket and hand prosthetic to play Captain Hook on the elementary school stage.
• Setting my daughters up with blogs and email addresses before they each turned ten.
• Posting photographs to MacDesktops in the late '90s and photo.net a few years later.
• Playing in a band in crappy bars or luxury New York hotels.
• Editing my high school yearbook (with others) and the UBC student handbook (by myself).
• Teaching courses about Microsoft Word.
• Talking about my cancer on the radio.
• Talking about geeky stuff on TV.
• Recording songs and giving them away for free.
• Helping my wife Air put together her podcast.
• Uploading thousands of pictures and videos to Flickr.
• Crafting obscure technical documents to make them understandable.
• And of course blogging and blogging and blogging for close to nine years.

I've done many of these things for no money (and some for lots of money), but for almost all of them, I wanted other people to know.

Okay, yes, I wanted to show off. Is that healthy?

For me, on balance, I think so. Whether for my jobs or my hobbies, being a ham and wanting others to see and appreciate what I do prods me to make those stories good, and useful. Humans are natural tellers of stories, and we enjoy anything presented in a story-like way. So I've tried to make all of those things in the form of a story. Whether a discussion of evolutionary biology, a fun rockabilly instrumental, a bunch of rants about PowerPoint, or a pretty photograph (or yes, even the instruction manual to install a wireless cellular modem in a police car), I want it to generate a story in your mind.

Stories don't always have an obvious structure. They don't necessarily go in predictable directions, or have a moral or meaning. I certainly didn't see it coming when all this cancer stuff from the past two and a half years happened. But I've been able to make it a story that other people can read, understand, and maybe find helpful. So too with my other passions.

So whatever you're trying to do, whatever hobby or job or habit you have, if you want to share it with others, try to craft it like a story—short or long, visual or auditory, but something that flows. Show it off. That, it seems, is what I like to do.

Derek K. Miller is a writer, editor, web guy, drummer, photographer, and dad. Not in that order. He's been blogging at penmachine.com since 2000, and has been on medical leave from his position as Communications Manager at Navarik Corp. since 2007. His wife and two daughters have put up with his show-offishness way longer than that.

Labels: band, blog, cancer, charity, editing, friends, music, photography, vancouver, writing

Yup, still on a blog break. So, more of my selected Twitter posts, newest first:

• Vancouver to Whistler in one minute (okay, I cheated):
  
  
  
• We're in the mountains, but in a civilized way. Pool/hot tub, grocery store across the street, Wi-Fi. But, uh, there is mountain weather.
• Super-duper stop-motion movie with 60,000 photo prints (ad for Olympus, via Lisa Bettany and Photojojo). Chris Atherton points out that this follows Wolf and Pig.
• Okay camera nerds, here's some rangefinder pr0n for you.
• The stereotypically blingtastic (and boobtastic) video diminishes Karl Wolf's tolerable version of Toto's "Africa." (And I'm no Toto fan.) It's like a live-action Hot Chicks with Douchebags. Yes, the choirboy harmonies are actually kind of charming, but he's going P-Diddy on it in the end.
• In the storage closet, my kids found something of mine from 1976 that is EVEN GEEKIER than my U.S.S. Enterprise belt buckle:
  
  Red shirts were available back then, as well as the blue Mr. Spock style, but I chose Kirk. Of course.
  
  
• The only sounds I can hear right now: the dishwasher, the fan in the hallway, and the birds in the trees outside the window.
• During my biology degree, Platyhelminthes was a favourite organism name. Now there's a plush toy! (With 2 heads!!)
• When I used to busk with the band, our biggest victories were scaring away the holy rollers across the street (we got applause).
• Neat. When a ship is built, here are the differences between milestones: keel laying, christening, commissioning, etc.
• AutoTune the News #6. Even more awesome.
• Picked up kids from Aldergrove camp. Sadly, there was a terrible accident on the Port Mann Bridge. We took a long Langley/Surrey/New Westminster detour.
• Google's changing culture. Point: Google now has more employees than Microsoft did at launch of Windows 95.
• Time lapse: 8 hours from my front window in about 1 min 30 sec, made with my new Nikon D90 and free Sofortbild capture software (and iMovie):
  
  Something like John Biehler's Nikon Coolpix P6000 is better for timelapse long term; the D90's mechanical shutter, which is rated for 100,000 uses, would wear out in less than 6 months if used for time lapse every day. P.S. Andy Gagliano pointed to a useful Macworld podcast about making time-lapse movies.
  
  
• Depressing: most Internet Explorer 6 users use it at work, because they're not allowed to use another browser.
• These Christopher Walken impressions are way funnier than I expected.
• The way monkeys peel a banana shows us we've all been doing it the needlessly hard way all these years.
• Um... hot!
• Most appropriate Flash cartoon ever?
• Drinking whisky and Diet Dr. Pepper, watching MythBusters. Pretty mellow.
• A good photo is "not about the details or the subject. It's what your subconscious pulls out of it all without thinking."
• Just picked up another month's supply of horrible, nasty, vile, wonderful, beautiful, lifesaving anti-cancer pills. Thanks, Big Pharma Man.
• My wife tells me she's discovered a sure-fire tip for a gal to attract quality guys in public: carry a huge SLR camera over your shoulder.
• "For the great majority [...] blogging is a social activity, not an aspiration to mass-media stardom."
• Just talked to younger daughter (9) for first time after three days at summer camp. She's a little homesick, but having fun.
• I took a flight over a remote landscape:
  
  
  
• The 50 worst cars of all time (e.g. "The Yugo had the distinct feeling of something assembled at gunpoint").
• I haven't seen either Transformers movie, but that's okay, I saw this.
• Dan Savage: cheating on your spouse should now be known as "hiking the Appalachian Trail." Good point in the article too.
• You can still buy a station wagon with fake wood paneling!
• Train vs. tornado. It does not end well. Watch without fast-forward/scrubbing for maximum tension.
• Just lucked into a parking spot on Granville Island. Time for some lunch.
• Sent the kids off for a week of horse-riding camp today. Wife Air and I had sparkling wine in the garden. Vewwy vewwy quiet around here.
• Just sorted a bunch of CDs. Still several discs missing cases, and cases missing discs. I feel like a total '90s throwback.
• Rules of photography (via Alastair Bird).
• When did the standard Booth Babe uniform become cropped T-shirt and too-short schoolgirl kilt?
• Listening to "Kind of Blue." It's been awhile.
• "A two-year old is kind of like having a blender, but you don't have a top for it." - Jerry Seinfeld (via Ryan).

Labels: audio, biology, blog, cancer, chemotherapy, family, flickr, geekery, google, microsoft, movie, music, oceans, photography, sex, startrek, transportation, video, whistler

While I'm on my blog break, more edited versions of my Twitter posts from the past week, newest first:

• My wonderful wife got me a Nikon D90 camera for my 40th birthday this week. I'm thinking of selling my old Nikon D50, still a great camera. Anyone interested? I was thinking around $325. I also have a brand new 18–55 mm lens for sale with it, $150 by itself or $425 together. I have all original boxes, accessories, manuals, software, etc., and I'll throw in a memory card, plus a UV filter for the lens.
  
  
• Roger Hawkins's drum track for "When a Man Loves a Woman" (Percy Sledge 1966): tastiest ever? Hardly a fill, no toms, absolutely delicious.
• Thank you thank you thank you to everyone who came to my 40th birthday party—both for your presence and for the presents. Photos from the event, held June 27, three days early for my actual birthday on Tuesday, are now posted (please use tag "penmachinebirthday" if you post some yourself).
• I think Twitter just jumped the shark. In trending topics, Michael Jackson passed Iran, OK, but both passed by Princess Protection Program (new Disney Channel movie)?
• AT&T (and Rogers, presumably) is trying to charge MythBusters' Adam Savage $11,000 USD for some wireless web surfing here in Canada.
• After more than 12 years buying stuf on eBay, here's our first ever item for sale there. Nothing too exciting, but there you go.
• Michael Jackson's death this week made me think of comparisons with Elvis, John Lennon, and Kurt Cobain. Lennon and Cobain still seemed to have some artistic vitality ahead of them. Feel a need for Michael Jackson coverage? Jian Ghomeshi (MP3 file) on CBC in Canada is the only commentator who isn't blathering mindlessly. But as a cancer patient myself, having Farrah Fawcett and Dr. Jerri Nielsen (of South Pole fame) die of it the same day is a bit hard to take.
• Seattle's KCTS 9 (PBS affiliate) showed "The Music Instinct" with Daniel Levitin and Bobby McFerrin. If you like music or are a musician, it's worth watching, even if it's a bit scattershot, packing too much into two hours.
• New rule: when a Republican attacks gay marriage, lets assume he's cheating on his wife (via Jak King).
• The blogs and podcasts I'm affiliated with are now sold on Amazon for its Kindle e-reader device, for $2 USD a month. I know, that's weird, because they're normally free, and are even accessible for free using the Kindle's built-in web browser, so I don't know why people would pay for them—but if you want to, here you go: Penmachine, Inside Home Recording, and Lip Gloss and Laptops. Okay, we're waiting for the money to roll in...
• Great speech by David Schlesinger from Reuters to the International Olympic Committee on not restricting new media at the Olympics (via Jeff Jarvis).
• TV ad: "Restaurant-inspired meals for cats." Um, have they seen what cats bring in from the outdoors?
• I planned to record my last segment for Inside Home Recording #72, but neighbour was power washing right outside the window (in the rain!). Argh.
• You can't trust your eyes: the blue and green are actually the SAME COLOUR.
• Can you use the new SD card slot in current MacBook laptops for Time Machine backups? (You can definitely use it to boot the computer.) Maybe, but not really. SDHC cards max out at 32GB (around $100 USD); the upcoming SDXC will handle more, but none exist in Macs or in the real world yet. Unless you put very little on the MacBook's internal drive, or use System Preferences to exclude all but the most essential stuff from backups, then no, SD cards are not viable for Time Machine.
• Some stats from Sebastian Albrecht's insane thirteen-times-up-the-Grouse Grind climb in one day this week. He burned 14,000+ calories.
• Even though I use RSS extensively, I find myself manually visiting the same 5 blogs (Daring Fireball, Kottke, Darren Barefoot, PZ Myers, and J-Walk) every morning, with most interesting news covered.
• I never get tired of NASA's rocket-cam launch videos.
• Pat Buchanan hosts conference advocating English-only initiatives in the USA. But the sign over the stage is misspelled.
• Who knew the Rolling Stones made an (awesome) jingle for Rice Krispies in the mid-1960s?
• Always scary stuff behind a sentence like, "'He is an expert in every field,' said a church spokeswoman."
• Kodachrome slide film is dead, but Fujichrome Velvia killed it a long time ago. This is just the official last rites.
• My friends Dave K. and Dr. Debbie B. did the Vancouver-to-Seattle bicycle Ride to Conquer Cancer (more than 270 km in two days) last weekend. Congrats and good job!
• My daughter (11) asks on her blog: "if Dad is so internet famous, I mean, Penmachine is popular, then, maybe I am too..."
• Evolution of a photographer (via Scott Bourne).

Labels: amazon, apple, backup, birthday, cancer, film, geekery, linksofinterest, music, news, olympics, photography, politics, religion, science, space, television, twitter

That makes two consecutive CT scans showing my tumours to be stable. This drug may keep me around for awhile yet.

But man, these side effects. Just got back to bed after another hour and a half in the bathroom. There's always a price to be paid to stay alive, I guess.

Labels: cancer, chemotherapy, ctscan

Sometimes, for a few days, it's easy to forget how sick I am. But I found out I have cancer two and a half years ago, and I've been under some sort of treatment—chemotherapy, radiation, surgery, or recovering from those things—the whole time. Tomorrow I'll hear the results of my latest CT scan, good or bad. That will help determine what comes next.

Last night I hardly slept. I was in the bathroom at least once an hour, sometimes several times, right through till 6:00 a.m., and luckily my wife Air was able to get up and make sure the kids got off to school, which is usually my job. Side effects of cediranib, my current medication, kept me up. They're hard to predict, so when I felt them coming on last night I had no idea whether they might clear out my intestines in an hour, or whether it would take all night. All night it was.

I will also note, without further comment, that the bag of popcorn I ate when I took the kids to the movies on Saturday was a very bad idea.

Now I'm awake, taking some Advil and hoping to recover enough to get out of the house sometime today. Before she went out to her appointments this morning, my wife put a second coat of varnish on our stairs. They look good, and there's a fan helping them to dry. We need milk and butter, the baby chickadees are growing in our birdhouse, I love my family. Life continues.

Labels: cancer, ctscan, family, pain, sleep

People are supposed to be either introverted or extroverted, but I've never been sure where I fit. Perhaps I'm an ambivert (yuck, an ugly word):

• Most of the time, I like meeting new people; I have stage love instead of stage fright (hence why I've taught courses, given speeches and been in a band for so long); I'm decent with small talk at a party or in a crowd; and I can be quite a chatterbox—not to mention loud—in the right context.
  
  
• On the other hand, I always enjoyed being an only child; when I'm uncomfortable or in pain I tend to become quiet and withdrawn; I despise making unsolicited phone calls and am not fond of telephone conversation in general; when out and about (either in my own city or somewhere else) I'm far more likely to wander about alone, take pictures, and think to myself than to strike up conversations with strangers; and I need significant time alone every day, time I often take when the rest of my family is asleep.

So I found Sophia Dembling's "Confessions of an Introverted Traveler" (via Kottke) fascinating. I like her thesis:

Though I don’t need to talk to a lot of people, I love watching them. [...] I travel for the travel.

I suspect I may be primarily an introvert—like Dembling, I find the North American preference for extroversion a bit oppressive. That doesn't mean I prefer solitude in all circumstances, but that social interactions take energy for me, and I need time alone to recharge. I like activities with friends, and especially with my wife and children, but given time to myself, I'm unlikely to want to meet anyone for lunch or a night out. Instead, I might go out by myself, and it doesn't feel at all lonely.

I recall last year's Gnomedex conference in Seattle, an intense three-day geekfest of ideas and discussion together with hundreds of my peers in a Seattle meeting room. The hotel my wife and I chose was a good 20-minute walk away up the waterfront escarpment and through downtown. Despite the physical difficulty of making the trek with my rolling bag of computer and camera gear while suffering cancer-treatment side effects (as I still do), I enjoyed the trip each day. That's because I could be alone and enjoy people-watching as I trundled through the glass tower canyons and Pike Place Market, and either charge up on the way to the meeting, or get my energy back on the way to the hotel.

Right now is a good example too. I've had a rough couple of nights of side effects this week, and my wife is out for the afternoon, but now that I'm finally feeling good, rather than setting up a lunch meeting, or saying hi to my parents (who live next door), I'll probably just go for a solitary walk. That's just what I need.

Labels: cancer, chemotherapy, family, friends, psychology, travel

Okay, maybe we did pay a price for our fabulous little trip. Not because of all the heavy food, but from the intensity of the activity. Aside from our outings, we also did a bit of shopping and quite a lot of swimming in the hotel pool. So, after all that, once we got home, my cancer medication side effects kicked in and I was in the bathroom till 2 a.m.

Then, this morning, we were all so wiped out we could hardly struggle out of bed. The kids were tired enough that I kept them home from school so they're in better shape for Thursday (or maybe after lunch today), and I've been resting. Alas, my wife had to make her way to a couple of medical and dental appointments, so she dragged herself out of the house.

Anyway, I think the weekend was enough of an educational experience that it's okay for the girls to miss a bit of school. The Woodland Park Zoo and the Boeing factory are a killer field trip, right?

Labels: cancer, chemotherapy, family, school, seattle, travel

Mine is a pretty sensible country, just like our stereotype, but not always. A key example is our bizarre asbestos industry.

Asbestos is nasty shit: "All forms of asbestos," says Leslie Stayner, director of epidemiology and biostatistics at the University of Illinois School of Public Health, "cause both mesothelioma and lung cancer." Anytime asbestos is discovered in old construction here in Canada, the location is shut down for thorough removal of the mineral. Numerous countries around the world have banned use of the substance outright.

Yet in a few Quebec towns, asbestos mining continues, supporting about 500 jobs and bringing in about $100 million a year. (My wife visited one of those towns, Thetford Mines, on a French exchange when she was a kid and the industry was larger.) Since it's illegal to use here, our asbestos gets shipped overseas, to India, Indonesia, Thailand, and elsewhere where it's still permitted. There, it presumably kills people by giving them cancer.

The puzzling thing is that the Canadian government acts like it's still the 1940s, arguing that the form of asbestos we mine and sell, called chrysotile, can be handled and used safely. Perhaps it can, though it seems unlikely—plus I highly doubt construction projects in developing countries do so anyway.

Even our erudite new Leader of the Opposition, Michael Ignatieff, seems to have been cowed by the asbestos lobby, moving from a strong anti-asbestos position a couple of months ago to a "we need more research" stance. Yet we've known for decades that the stuff is a substantial, carcinogenic health hazard in all its forms.

It's sad to say, but if Canada's asbestos industry were anywhere other than Quebec, it probably would have shut down years ago, especially since it is now such a small part of our economy. Continued support from our two major federal parties, the Liberals and the Conservatives, seems to me a cynical political move, to avoid offending Quebec nationalists and the chrysotile lobby based in that province.

So one of our long-simmering domestic political quagmires keeps us selling a toxic mineral to the developing world. Not very sensible.

Labels: canada, cancer, controversy, environment, linkbait, politics

It's a cliché that without health, we have nothing, but clichés exist for a reason. Here are my kids when they're healthy:

This week has been a bit of a worry because our younger daughter (top, in yellow) has been home sick for a couple of days with a vague malady (nothing like swine flu, fortunately), while yesterday, our older daughter (bottom, in fuchsia) tripped during gym class and made a total face-plant on the school gymnasium floor, leading to a doctor's visit to rule out a concussion.

(Coincidentally, two other kids also hurt themselves during the same gym class, even though they weren't doing any oddball activities—one gashed his head, the other just banged his leg and didn't have to leave school.)

Of course, I'm often laid up with side effects from my cancer medication, and this week even my wife had to ice an ankle she twisted a little while ago. So we've seen an inkling of what it could be like if we were all out of commission. I'm glad that's not the regular state, at least for the other three members of my family.

Labels: cancer, family, pain, school

I don't scour the Web for cancer news. Having cancer myself means the topic is enough on my mind already without reading too much more about it, and I don't seem to be the type to leap wholeheartedly into cancer advocacy as some do. Yet interesting stuff still comes my way.

It's also easier to read that stuff since my last CT scan was more encouraging than usual—even if today I'm having a worse-than-usual bout of side effects from my medication. I've been sitting on our recliner couch most of the day, and have to stay close to the bathroom all the time. (Hey, minimal carbon footprint!) So, some of my reading today:

• First, my friend Alistair sent a link to this comic, which reinforces that "curing cancer" isn't a realistic goal, because cancer isn't one simple thing. It's a bit of a bummer, really, but also a good reality check.
• Speaking of bummers, this series of photos (via Kottke) of a young cancer patient who kept herself going so she could get married to her high school sweetheart, but died five days later, is wonderful. Tremendously sad, yet uplifting too.
• I know this is a Big Pharma ad, but the Pfizer "Be Brave" commercial slays me every time.
• A couple of years ago, when I thought I might die soon, I posted about what I'd like to happen to my body once I'm dead. Now, I seem to be carrying on, but that stuff is still worth considering for anyone, and I discovered recently that it's surprisingly easy to donate your body for anatomical study and medical research at my alma mater, UBC. They even have a consent form to download right from the site. Unfortunately, "advanced metastatic cancers" may prevent a body from being useful for what they need, so that's a bit annoying. Maybe donating just my skeleton somewhere would be better. Fortunately, it looks like I have some time to investigate this stuff now...
• My Flickr pal e_hoogie has a rare genetic condition that makes her prone to all sorts of different cancers, and she's been treated for five different kinds, but she's still going, five years later. Inspiring.

As for me, I expect the side effects to calm down this afternoon or evening. I may go take some pictures in the yard right now. Maybe tomorrow I can get out and snap some more in the sun, and then go see one of my daughters read at her school for literacy week.

This is my third spring with cancer, and I'm glad to see it. Here's hoping for a bunch more.

Labels: cancer, chemotherapy, environment, photography, science, television

I don't write as much about my cancer here as I did a couple of years ago. That doesn't mean it's gone, or going away—I still have nine malignant metastatic tumours in my lungs, but my treatment has turned into a routine, something of a drudgery. I take a small but nasty pill every day, and have side effects that keep in me in the bathroom for an hour or more every night or two. Every two months I go to the B.C. Cancer Agency and lie down in a big doughnut-shaped machine for a CT scan, and then a few days later I meet an oncologist to get the results.

And today, for maybe the first time ever, the news is relatively positive. I usually walk into the clinic expecting bad news, such as that the tumours would have grown substantially. If that had been the case, I planned to stop the current drug and take a break, then try something else in a couple of months. Yet there aren't a lot of something elses anymore, so that would have been a bummer. Still, it's what I expected, since it has been the pattern. I had asked my wife to come with me, expecting I'd need her support.

But instead, today the doctor told us that there has been no measurable change in my lung tumours. No, they haven't shrunk, but they are no bigger either.

Apparently there is one lymph node they had noticed before (though I hadn't heard about it) which has grown a bit, but overall he called it called it "no change," i.e. the cancer has been stable over the past two months. That means the cediranib pills are probably doing something, at least keeping the tumours at bay, and while the side effects aren't fun, they're manageable. Otherwise, I feel pretty good.

So, more of the same treatment for now. Pills, and side effects, but a livable life. And we'll see how things are in two months. I'm encouraged: this is the first time that the lung metastases haven't grown significantly between scans. I can plan for the summer and maybe ride my bike some, and we can do our thing here at home. That's good enough for me today, and I have some spring in my step this afternoon.

Plus, it looks like I may see the Olympics come to town after all.

Labels: cancer, chemotherapy, family, fear

I inherited my Oma's strong teeth: when she died at age 91, she still had most of her natural teeth, despite having lived through two world wars, the Berlin Blockade, and a career as a restauranteur. While I had lots of orthodontics when I was a kid, and had to have all four widsom teeth removed in 1990, I have never had even a single cavity.

Until now. When I went to see my dentist this afternoon for a routine cleaning, a bit of sensitivity and an X-ray showed a tiny amount of decay on the front surface of the last molar on the top left side of my mouth. I'll set up an appointment to have a filling next week.

Since my teeth have put up with almost 40 years of abuse so far, I can't really complain. Especially considering how minor a cavity is compared to the other shit I'm dealing with these days. A few years ago I would have been pretty disappointed by tooth decay; now it's almost laughable.

In fact, there's a good chance the only reason I have this cavity is because the chemotherapy and other cancer treatments I've had over the past couple of years are pretty hard on my immune system and the rest of my body, teeth included. My dentist said my gums are actually in surprisingly good shape, considering. My Oma-teeth are still holding in pretty strong.

Not only that, but after all the surgery and stuff I've experienced recently, and all the heavy-duty painkillers and other drugs I've had to take, a bit of dental work is about as threatening as a mosquito bite. I'll drop in for 45 minutes, have my jaw frozen, listen to my iPod, and head home. From my current perspective, it's a piece of cake.

Labels: cancer, chemotherapy, family, fear, pain

Our friend Kim is one of the designers competing on this season's Project Runway Canada, so we've been watching the show since it started a few weeks ago. It was filmed last summer in Ottawa. At the end of this Tuesday's episode, I was shocked to see an announcement that one of the designers, Danio Frangella (who left during the first episode because of health complications) died last week of cancer. He was 34.

He was not in good shape during that first episode, because he'd been undergoing cancer treatment for seven years, and had trouble walking because of his leg ulcers. Learning that he had died gave me a chill, because of course I have cancer too, and have had it for a couple of years now. Indeed, this week it is exactly two years since I began my medical leave from work. Two years!

If you haven't had cancer or known someone with it, you tend to assume that once someone gets it, they either get treated and go into remission (or are cured), or they die pretty swiftly. Those aren't the only alternatives. Many people live with the disease for years, sometimes decades, undergoing treatments and adjusting their lives around their symptoms and side effects. Danio was one of those, and so am I.

Even successful treatments may not be what you expect. Most statistical studies look at cancer treatments as successful if their subjects are still alive after five years—you often see "five-year survival rates" in such studies. I suppose that's fine if you're a researcher, or if you're a cancer patient in your 70s or 80s.

But if you're not yet 40, like me, or like Danio, five years isn't a very long time. I have a decent chance of surviving five years past my diagnosis, but that's not enormously encouraging, not when most people my age are thinking ahead a lot more than five years. I'm already almost half-way to the five-year mark. All the medications I've taken since 2007 haven't done what they really need to do, which is stop or reverse the nine small metastatic tumours still growing (slowly) in my lungs. On the other hand, I've also already lived longer than a lot of people diagnosed with my sort of aggressive colon cancer do.

One of the first things my gastroenterologist Dr. Enns told me back in '07 is that while there are tons of statistics out there on cancer survival rates, no one person is such a number, and the statistics can't predict how one person's disease will progress, or how long they will live. Just yesterday my oncologist Dr. Kim noted that research shows physicians to be notoriously poor at predicting life expectancy for cancer patients—no better than patients do ourselves, and in many cases no better than a wild guess.

As I wrote recently, I have "months certainly, years quite possibly" to live. How many years, I don't know. Nobody knows. Will I see my kids graduate from high school, or reach my 20th wedding anniversary with my wife in 2015? It's possible, but unless a new treatment starts working, or I go into remission because of lifestyle changes or another reason in that time, it may not be likely.

Then again, some people die young in car crashes or for other reasons, never anticipating their last day, or their last minute. If I'd been born 100 years ago, I would probably have died in my early 20s from diabetes, and might never have married or had children, or even seen a website, let alone built one like this. And if I lived in Swaziland (where 38% of adults have AIDS) or Afghanistan (with astronomical rates of infant mortality), even today, I'd be at the end of the average male life expectancy already.

Here, I am lucky to have a wonderful family, and support, and great health care, and I can still choose to live, to enjoy it, to write what you read, and to make my life as long and happy as I can.

Labels: cancer, chemotherapy, death, diabetes, family, television

I haven't written about my cancer treatment much here recently, but that's not because nothing is happening. It has been exactly two years since I first found out I needed major cancer surgery (though I didn't realize at the time how long this would go on). I've been through several such surgeries, radiation therapy, numerous bouts of chemo, and a whole range of side effects. In some ways, despite its severity, my cancer treatment has become part of the background of my life.

Since this past November, I've been taking a fairly hefty dose of cediranib, a relatively new experimental anti-cancer drug. I take a pill or two once a day, which is an improvement over the hours-long IV infusions I've had before. And of course I have side effects.

They're different this time. Rather than overwhelming fatigue and several days of nausea every couple of weeks, they are intestinal, and less predictable. To summarize and not be too graphic, my family has come to call the bouts of symptoms I get every couple of days "the Poopfest." When it happens, I'll often be in the bathroom for an hour or two at a time, or leave the washroom to come back to bed, then have to turn around and go right back. Sometimes I get what I call "Jurassic Gut," where my abdomen sounds like a Spielberg dinosaur growling, and those substantial gas bubbles can be painful.

For other patients, the drug can also cause tiredness, skin symptoms, and high blood pressure. I've been lucky not to get all of those. My blood pressure is naturally a bit low, for instance, so even when it has risen a bit, it's well within normal range. But this week has been particularly harsh.

I developed a chest cold—the rest of the family got it too—but it has hung on, and that's when the fatigue set in. The past few days I have slept, and slept, and hardly been out of the house. The Poopfest has turned into diarrhea that sometimes lasts most of the day. Last night we all went to a friend's party for a few hours, but when we got home my Jurassic Gut was simply astounding, and lasted for well over three hours. I couldn't get to bed till 2 a.m., and while I think I'm slowly getting better today, it is exhausting.

When I'm feeling well, which I do sometimes, I could almost imagine going back to work. But then things go a bit sideways like this, and I know I'm still pretty ill. In a couple of weeks, I'll find out after my next CT scan in mid-February whether the cediranib is helping to slow down the growth of my lung tumours. Hope so.

Labels: cancer, chemotherapy, family, fatigue, pain

• Some photographers buy old lenses (even manual focus, manual aperture lenses) for their brand new cameras. Here's why.
• This no-knead bread is apparently ridiculously easy, all the rage, and quite time-consuming to make.
• Darrell Fandrich lives near Seattle. He takes cheap Chinese pianos, puts a lot of work and experience into them, and creates a great piano, like "upgrad[ing] a Hyundai to run like a Bentley, for the price of a Honda."
• How to use Photoshop Elements 6 (which I don't own) to merge several mediocre group photos into a single good one.
• Since I have cancer, several people have told me (and told me, and told me) about DCA and essiac tea—among dozens of other potential cures and treatments. As I said about DCA a couple of years ago, I'm still going with the evidence, and it's not yet there for those particular treatments.
• Darren is a little frustrated with iTunes on his PC. And he draws a very cute sea kitten (actually, I guess it's probably a freshwater variety, so it would be, what, a pond kitten?).
• My latest camera collage is up to 8700 views, 43 comments, and 67 favourites on Flickr. Its predecessor from June has passed 41,000 views, 82 comments, and 217 favourites. And my original version from December 2007 has reached 11,500 views, 109 comments, and 39 favourites. Yep, we nerds love our camera porn.
• We've posted the first episode of the Inside Home Recording podcast for 2009: there are enhanced (pictures and links) and MP3 (audio only) versions, plus a separate full unedited half-hour interview with Peabody Award–winning producer Paolo Pietropaolo from CBC Radio.

Labels: cancer, food, insidehomerecording, itunes, music, photography, podcast, radio, science, software

The main side effect of my current cancer drug, cediranib, is intestinal. I have to go to the bathroom a lot. Sometimes a whole lot. The last two nights, it's been at least once an hour, sometimes more, all night long. On the night of December 30, I didn't sleep at all between midnight and 4 a.m. because of it.

Last night, New Year's Eve, was even worse. I slept a little, intermittently, through the night, but I woke up frequently and rushed to the toilet, well over a dozen times. Between 7 and 8 a.m. alone, that happened six times. Afterwards, things settled down somewhat and I was able to sleep.

And sleep, and sleep. I woke up around noon to eat something, then again at 5 p.m., but otherwise I have been in bed all day. My butt is sore from the night. Now I'm watching SpongeBob SquarePants. So far this is the worst day of side effects since I started this treatment in November. Most days haven't been anything like this, so I hope tonight and tomorrow are much better.

I still prefer this to the nausea, pain, and morphine dependency I've suffered before—I think. Maybe this means the drug is doing something. I hope so. And I hope January 2 is an improvement.

Labels: cancer, chemotherapy, holiday, pain

It's been a busy Christmas, made busier by enough snow to nearly paralyze a usually not-very-snowy city like Vancouver. Yet my wife, daughters, and I were able to pilot our snow-tire-equipped Toyota Echo through the wilds of East Vancouver to my aunt and uncle's house for our traditional family Christmas Eve event. We did have to bunk out there overnight, though.

Today, Christmas Day, we made it home, cleaned up, changed, unpacked, and then ventured out to Maple Ridge for a quiet dinner with my wife's parents. The roads by then were better. Besides eating, I performed some of the usual in-laws' tech support to help my father-in-law configure their new Internet Wi-Fi radio set, and my mother-in-law create her first blog. (No content yet, so a link must wait.) With more snow forecast, we made an early night of it and returned to Burnaby again, and Christmas was complete.

Now, as the day ends, I think back not only on Christmas and my happiness at being relatively healthy again this year (tumours in my lungs are still growing, but very slowly, and maybe my new holistic health approach is assisting the cediranib in keeping them somewhat at bay), but also about the deaths of two people. They were my friend Martin Sikes, who died suddenly a year ago on the morning of Christmas Eve, after sending me what turned out to be a spooky email; and James Brown, who appropriately, somehow chose the most bombastic of days, December 25, to make his last fleet-footed shuffle off the stage.

From now on, to me, December 24 will also be Martin Day, and December 25 is JB Day. In their honour, I'm drinking my first glass of The Balvenie 15-year-old scotch whisky tonight, from a bottle given to me on my birthday in 2007 by Alistair—but which I have only now opened.

I hear the plow truck finally making a pass through our street outside, near midnight. I am exhausted, and content. Slàinte to MS and JB, and Merry Christmas to you.

Labels: cancer, chemotherapy, death, driving, holiday, inspirehealth, martinsikes, music, vancouver, weather

For the first time since before our kids were born more than a decade ago, we bought a real Christmas tree for our living room. The Douglas fir was a little messy to put up, but we have a good vacuum, and now the house smells great. It's also good sign than it's sucking up water like crazy, so it likely won't dry out in the next week and a half:

Unfortunately, while I I did haul it into the house and help get it put up, I didn't help decorate. That's because my current cancer medication, cediranib, has one major side effect: diarrhea, or something close to it. I don't get it every day, but when it happens, it comes on suddenly and lasts for several hours. And last night was one of those times.

My wife and daughters didn't need my help, though. They did a great job decorating, as usual.

Labels: cancer, chemotherapy, holiday, snow, tree

You will recall my crazy long eyelashes, which have grown to ridiculous length since one of my previous chemo treatments stopped in the spring. They seem to keep growing even when they shouldn't, so tonight my lovely wife took some scissors to them so my lashes stop batting against my glasses and smearing them up:

My lashes still look somewhat mutant, because of their unnatural lushness and now cropped ends—they now look a bit like brushes—but it's an improvement. For good measure, she trimmed my eyebrows too, since they were going a bit nutty as well. It feels much better.

Labels: cancer, chemotherapy, ego

Last week my wife and I attended a two day "life enhancing seminar" at Inspire Health, an unusual cancer-treatment facility in the Fairview area of Vancouver. It is indeed an inspiring place, and an unusual one.

Inspire Health (formerly the Centre for Integrated Healing, and now ten years old) advertises itself as "integrated cancer care," and what that means is that they take a whole-person approach to battling and living with the disease. There are several medical doctors there, whose consultations—the first one is 90 minutes long!—are covered by the regular B.C. Medical Services Plan (and so don't cost me any money). But there are also many complementary treatments such as acupuncture and massage available (for a fee, as elsewhere in the province), in addition to a whole bunch of supportive resources in the form of free yoga and meditation classes, a resource library, and so on.

The seminar itself costs some money, and is a sort of boot-camp introduction to the centre's philosophy, with numerous speakers over two long days. It's difficult to summarize, but the nub of it is to help patients like me take control of our health and treatment. That's a change for me. It's not that I've been timid about my cancer care over the past two years—but I have been pretty passive until recently. I simply lined up and took whatever my doctors could throw at me to try to destroy the tumours in my body, and suffered whatever pain and side effects that entailed. Here's what I wrote in March:

...The basic choice has been: Treatment or death? Yes or no? That's a pretty easy decision. My real choices have been pretty small...

The choice is no longer so stark, because the conventional treatments I'm taking now (like Cediranib) are more investigational, and I have to weigh their benefits and disadvantages more explicitly. Inspire Health is designed to help me make the more complicated decisions that come now, and to get me eating better, exercising more, relaxing effectively, and overall feeling better—all of which may assist in reducing the effect of cancer on my health, and will certainly help minimize the side effects from the treatments I decide to pursue.

Based on medical advice well supported by good research, I'm already taking some useful (and extremely non-bizarre) vitamins and supplements, and we've started eating more organic and whole foods, as well as improving our family's nutrition generally, which can only be for the good. I'm getting out for a brisk walk pretty much every day, even in the nasty weather, and instead of buying a coffee I'm often getting one of those bizarre-looking but surprisingly good-tasting carrot-spinach-beet–type fresh juices at the mall. A couple of days ago I attended my first-ever yoga class at Inspire Health, and though it was a beginner's session and very slow and gentle, it was also surprisingly strenuous. I'll be going back next week.

What's perhaps most unusual about Inspire Health is the nature of the space itself. While it is in many ways a medical office, it looks, feels, sounds, and smells nothing like one. It's decorated in subtle earth tones, with plenty of art. The hallways curve subtly. The lighting is gentle and incandescent. The furniture is soft and comfortable. It smells like warm spices and tea. It's relaxing, not stressful. As you might expect from my description, there's a certain new-agey granola vibe, which as a hard-brained science-dude rationalist I have to work to avoid being a bit cynical about.

But it works. I recommend that any cancer patient in the Vancouver area try it out—we're lucky to have it, because it's one of the only facilities of its kind in North America. Go there, for a doctor's appointment or a seminar or a yoga class, and you feel better just walking in, which is a big contrast to any other medical facility I've ever visited. And there are a lot of smart people associated with the place. Will all this stuff slow or stop my cancer? I don't know. But I'm already feeling better, no matter what else happens.

Labels: cancer, chemotherapy, inspirehealth, joy, vancouver

Back at the beginning of this year, the chemotherapy treatments I received made my hair thin and grey. My eyelashes similarly thinned out almost to unrecognizability. But I'm on a different chemo regimen now that doesn't make me shed hair, so check them out now...

I had shaved my head in March because of the annoyance. It has grown back very slowly, but now it's back and dark again. I didn't trim my lashes: they just fell out. What's weird is they have come back at a bizarre fluffy mutant length, like I'm wearing a ton of mascara.

Raul asked, "Do they feel different? e.g. do you have any particular sensitivity around the hair follicles?" Not there, but when I blink, they now brush against the lenses of my glasses, which is a strange feeling. And I can see them—another change.

Although they have been pretty long most of my life, my eyelashes have never looked anything like this before. But I've gotten used to them, and most of the time I don't notice the difference unless I look in the mirror. Check out my Brezhnev eyebrows too. Those are going to need a trim.

Labels: cancer, chemotherapy, ego

This week I'm spending all day every day at the B.C. Cancer Agency having my blood tested, blood pressure taken, and ECGs done as part of the Phase I clinical trial I'm participating in—hence my lack of blog posts.

It's not much fun, but I do have plenty of free time in between tests. I spent most of today sleeping after a mostly sleepless night of intestinal side effects (now much better). But yesterday I was more awake, and spent some of my time taking an old guitar riff I'd recorded more than two years ago and building an actual instrumental tune out of it. The result is:

• "In Phase One" - 3.1 MB MP3 file, about 2 min 20 sec

There's something of an '80s U2/Police/New Wave feel to the track. I'm not sure where that vibe came from, but it's still pretty obviously one of my kerrang-kerrang geetar instrumentals, as usual. I hope you like it.

Labels: cancer, chemotherapy, music, penmachinepodcast, podcast, science

A few weeks ago I was contemplating skipping my next clinical trial of cancer treatments, but after talking to my doctors it seems that the drug under examination, cediranib, has a better potential for being effective, and is less likely to cause nasty side effects, than I thought. So today I took my first dose, in the form of a tiny pill no bigger than a small vitamin tablet. I only down one a day, quite a contrast to the several hours of IV dosing from my previous chemo treatments.

It almost seems like too little to do anything, but I've learned over the past couple of years that little things can have big effects in cancer treatment. So here's hoping. It will be a couple of months until my next CT scan indicates any activity (slowing, stopping, or shrinking my lung tumours) from the drug, but I'll also be having numerous blood tests and other evaluations, mostly in the next couple of weeks, as part of the scientific study. So I'll feel like something is happening.

I've felt no side effects at all so far—I wouldn't necessarily expect to, on the first day—so today I dealt with another problem. Or at least I hope I did. After this weekend we discovered that our roof appears to be leaking into our upstairs bathroom, bubbling up the paint all down one of the corners of the room. Last night I ventured up into our narrow attic crawlspace with one of our small digital cameras, where I confirmed the leak through from the roof. We last had the roof re-done in 1994, so it's no surprise it might be aging.

Luckily, today was a rare sunny autumn day in Vancouver. So this afternoon I schlepped down to Home Depot for a can of patching tar, then my daughters and I climbed up on the roof of the house after school (they'd never been up there before). The tar-paper roof tiles actually look to be in good shape, but the seams are indeed dried and cracking. The girls watched while I troweled the noxious black goop onto and around the most likely leak zone. The rain is supposed to return tonight, so we'll find out soon enough whether I did a good job.

We're going to have to repaint the bathroom no matter what. And next time there's a spell of good weather, it might be wise to re-tar all the seams on the roof, just in case.

Labels: cancer, chemotherapy, home, repairs, weather

If you missed my interview on CBC Radio earlier today, I have an MP3 file of it available now (5.2 MB, about 12 minutes). I spoke with host Stephen Quinn about all the drastic stuff I've been through since June 2007, including my major surgeries and several chemotherapy regimes, as well as the new phase of my cancer treatment, that of living with the disease rather than simply trying to destroy it.

Incidentally, I had intended on publishing the audio to my Penmachine Podcast too, but Apple's iWeb software, which I use for that, has a nasty bug that's been around since April, and which doesn't seem any closer to being fixed. It prevents me from updating the podcast without a lot of extra work, so I think I'll just plan to switch over to a less awkward podcasting tool in the near future. I'll let you know when that happens—and I'll have some new original music to post there too.

Finally, a new episode of Inside Home Recording should be online tomorrow too.

Labels: apple, cancer, cbc, ego, insidehomerecording, podcast, radio, software, web

AUDIO ONLINE: I've posted audio from the interview online late this evening, in case you missed the broadcast.

For the first time in almost a year and a half, I'll be appearing on CBC Radio Vancouver's On the Coast afternoon drive-time show to talk about my ongoing cancer treatment, this time with new host Stephen Quinn.

I'm recording the interview this morning, but it will go to air later this afternoon—I'll update this post once I find out precisely when. If you're not in broadcast range of CBC Vancouver in southwestern B.C. (690 AM in Vancouver, also currently experimentally at 88.1 FM), you can listen to the high bandwidth or low bandwidth Windows Media stream (Mac users can use the free Flip4Mac plugin).

UPDATE: My interview, recorded before lunchtime this morning, will be broadcast just after the 5 o'clock news today, around 5:10 p.m.

I'll do my best to post the audio to my podcast afterwards as well. You might also want to listen to a related interview I gave to the national CBC Radio show Spark this last spring, which was rebroadcast just a few weeks ago too.

Labels: cancer, cbc, ego, radio, vancouver

I think some of you might have garnered the wrong impression from my previous entry. I'm not giving up on conventional cancer treatment, nor am I resigned to dying soon. Rather, I'm considering my choices more carefully, trying some new things, and making a stronger cost-benefit analysis of the options presented to me.

Until September, the conventional treatments I'd been taking—chemotherapy, radiation, surgery—still showed reasonable promise of putting my cancer into remission, or shrinking it, or even (before we knew it had metastasized into my lungs) curing it. So it was worth trying everything, side effects and life-on-hold be damned. The surgery worked its magic: if the cancer cells hadn't found their way to my lungs first, I might very well be cancer-free by now from the skilled work of Dr. Phang and his team at St. Paul's Hospital. The radiation I'd had before that might even have helped.

But the chemo...well, those various poisons I've taken in 2007 and 2008 may very well have kept any further cancer from appearing in my intestines, but the tumours in my lungs are tough little fuckers, and have resisted being beaten down. Now I have to look at the new treatments I might have coming up, and decide whether their relatively low likelihood of zapping those same malfunctioning blobs of tissue are worth what I might have to suffer in taking them.

I mean, it's fine and noble to help cancer research, but I've already done that a couple of times. I might still do it this time, but even if I do, I'm prepared to bail out early if the side effects are too harsh or if it doesn't seem to be helping. I'm also meeting with a doctor at Inspire Health next Friday to talk about other stuff: nutrition, exercise, relaxation, complementary treatments, and so on.

This is a new phase of how I understand my disease, and how my family and I live with it, one I feel good about because I'm putting a priority on the living part.

Labels: cancer, chemotherapy, death, family, inspirehealth, science, surgery

My wife Air is wiser than me—more self-aware, better at thinking long term. A big reason I'm not that way is because, until I developed cancer at the beginning of last year, I'd never had to face big, difficult decisions. I had a happy, stable childhood, did well in school, lucked into good jobs, and found her. (More accurately, she found me. See what I mean?)

Even after my cancer diagnosis, I've followed the path I've usually chosen in life. That is, I've coasted, and let gravity take me where it will. My treatment decisions have been easy ones. Follow doctors' orders. Get tests, have surgery, take chemotherapy and radiation, more tests, more surgery, more chemo, more chemicals, more treatments, coming up on two years' worth now.

On hold

The surgeries in my intestines were successful, but small nodules of cancer spread to my lungs anyway, and the chemical medicines for those haven't worked so well. The metastases continue to grow slowly, regardless of what my doctors have thrown at them.

My latest surgery a couple of weeks ago was my first that wasn't about attacking the cancer. It was simply to make my life better, to reconnect my intestines so that I'm no longer walking around with an ileostomy bag of poop glued to my belly. Now I have another new, healing scar, and I'm re-learning how to use the bathroom the way I used to.

That surgery prompted my wife to have a talk with me a couple of days ago. With her wisdom, and her insight, she's seen what I've been doing in my mind for the past couple of years. I've been treating my cancer as something to fight with everything the doctors and nurses can offer, no matter how sick they make me, hoping that one of those weapons will kill it so I can move on with my life. I've put my life on hold—and my family's life too, hers and our daughters'—to fight the disease, treating it as a phase to get through before I return to something normal.

Experiment, not treatment

Except that's not how it's going. The next treatment the B.C. Cancer Agency is offering me is a Phase I clinical trial of chemotherapy agents. That means it's a very early human test of the drugs involved, not even designed to find out whether the drugs work to fight cancer, but rather how patients like me respond to them—what levels they appear at in my bloodstream, how they interact, what side effects they produce. In other words, we've run out of the conventional therapies, and we're moving on to experimental ones that have a very small chance of working. They are, however, likely to produce side effects, even if they aren't effective in shrinking my cancer.

Air made me ask myself—after almost two years on hold, most of which I've spent hammered down by those side effects, or recovering from surgery—how I want to live my life with cancer. Because that's what it looks like I'll have to do. We don't know how long that will be: months certainly, years quite possibly. All indications are that, like my diabetes, I'll have cancer for the rest of my life. It will probably be what kills me, whenever that is.

Yet since I stopped my last chemo treatments in September, I've felt good, verging on healthy, better than I have in ages. Therefore, much of what I've suffered through, especially recently, has been from the treatments, not from the disease. I thought that suffering was a necessary part of the fight. So I thought. But now it's time to make some real decisions.

Real decisions

Do I want to be part of this new Phase I trial, to contribute semi-altruistically to cancer research, spending many days at the Cancer Agency getting tests, taking pills every day, maybe feeling sick all the time and getting more strange skin rashes, perhaps even developing other weird side effects like elevated blood pressure, maybe for no reason that might actually get me better?

Or do I want to look at something else, like Vancouver's Inspire Health Integrated Cancer Care, and the Callanish Retreats, to try different things and look at managing cancer instead of fighting it? Strange as it sounds, should I make cancer part of how I live my life, rather than something that stops me from living it?

When I heard about the trial yesterday, I assumed, almost unconsciously, that I'd proceed with it. But that's still coasting, just taking whatever the doctors serve up from a diminishing buffet. There are places I still want to go in my life, things I want to do, the husband and father I still want to be. Perhaps now is the time to go there, to do them, to be that, because I can't wait forever first.

I shouldn't waste my life trying win a fight that likely can't be won. I should take it off hold, and live it.

Labels: cancer, chemotherapy, death, family, ileostomy, inspirehealth, love, science, surgery, travel

I'm back home now. The surgery to reconnect my intestines into proper working order (almost a year and a half after my initial cancer-induced disconnection surgery) went well, and I am recovering about as fast as could be expected.

To no one's surprise, and I'm tired and sore and plan to do a bunch of sleeping rather than blogging, email, and so forth. Overall, it went very well, and I'm doing my best to avoid having to go back into the hospital with a blockage like a did last time.

Okay, I have to lie down now.

Labels: cancer, hospital, ileostomy, pain, surgery

In less than two days, I have surgery to reverse my ileostomy and reconnect my intestines into proper working order. It happens sometime on Friday, October 10. Having had four surgical procedures (three under general anaesthetic) since early 2007, I'm pretty blasé about the procedure itself. I'm a little apprehensive about the pain and recovery, which will likely have me in St. Paul's Hospital for about a week, and on soft foods for awhile after that.

Tomorrow I'll consume nothing but fluids in preparation: I've already had my last solid meal for awhile. I'll go see my cousin graduate from university in the morning, do various chores after that, get ready for the hospital in the afternoon, and then call to find out my surgery time.

It's still a bit like getting ready for a car accident you know is coming, so the nerves are there. But this time, I've been through the same kind of collision before. I know morphine works. I'll be renting a TV. But damn, there's still no wireless Internet at the hospital—I wish they'd get on that.

Labels: cancer, hospital, ileostomy, pain, surgery

I'm having another colonoscopy on Thursday, my first in more than a year and a half. It's in preparation for surgery next week to reconnect my intestines so I can get rid of the bag of poop I've had to keep glued to my belly since the summer of 2007. So I won't be posting here tomorrow, I don't think.

And you know, in the scheme of what I've been through in the past couple of years, a colonoscopy is nothing. If you're over 50 or (like me, it turned out) are otherwise at risk for colorectal cancer, go get one. They give you good drugs, so you won't mind.

In the meantime, check out 50 images in honour of NASA's 50th birthday, via Bill.

Labels: cancer, colostomy, hospital, ileostomy, science, space, surgery

There's no good reason to try to determine which has been the worst year of your life, but I do consider it from time to time. It could have been last year, when I found out I had cancer, went through painful simultaneous chemotherapy and radiation, had four different surgical procedures (one of which kept me in hospital for almost a month), lost 60 pounds, and ended off with yet more chemo and no end in sight for treatment, even though I was feeling better.

It could be that. But it could also have been 2004, when I nearly lost my wife Air to clinical depression. I alluded to what happened that year, but never wrote about it it any detail, to maintain her privacy.

Now, almost five years later, she has written a four-part series on surviving major depression, as guest blogger at Mental Health Notes. She covers her initial post-partum depression back in 2000, the catastrophic breakdown in 2004 that took her to our local hospital's mental health ward for two weeks, her subsequent intensive outpatient treatment program at the hospital and gradual return to work, and the silver linings she has learned about in the years since, and now that she's had to take care of me through all my health problems.

In that weighty year, the worst moment for me was one day, after bringing our daughters to visit Air in the hospital. We had played cards with her in the patient lounge, on the ward where nothing is sharp, and there is nothing mounted to the wall or ceiling that will hold a person's weight. I brought the kids back to the car and buckled them into their seats, then I slumped on the outside of the door, and I cried and cried, not even caring what the girls thought, or whether some stranger might see me there, weeping against the station wagon in the hospital parking lot. At that moment I didn't know if my wife would ever leave that ward, or if she did, what would happen. I feared our life together would change permanently.

And it did. But, in many ways, for the better. When you get married, there's a reason you pledge to stay together for better or for worse, and part of it is that the worse forges something in your marriage that the better never could.

I look at her writing this way: I don't have to be brave to admit I have cancer. It brings almost nothing but sympathy from everyone who hears. I wish it were so for depression and other mental illness, but it isn't. As someone who's never been clinically depressed, I regret terribly that I really didn't understand what Air was suffering at all until it had gotten very, very bad in late 2003 and early 2004. I didn't have a fucking clue. And most of the rest of us don't either. Many people who have no experience with it remain judgmental about mental illness, so for her to write about it candidly now, when she doesn't have to—well, that's brave.

Her treatments have worked extraordinarily well over the past four years, but as with my cancer, as long as she is alive her battle is never over. I hope I am a better help in her fight now than I was in my previous ignorance. As my love and the person who cares for me, she is certainly the best reason to try my hardest to stick around.

Labels: blog, cancer, depression, family, love, web

So, how do I put this? The chemotherapy isn't working (at least, not well enough), so my doctors have cancelled it and we're looking for something else to keep the cancer from progressing. That may include different, more experimental forms of chemo, or surgical radiofrequency ablation (RFA) of the spots in my lungs. In my initial reading, the RFA approach looks like it could be promising.

My emotions about this development are all over the place. To know that the largest metastatic lesion in my lungs has grown from 1.4 cm to 1.6 cm in diameter, and the smaller one from 1 cm to 1.4 cm, is dismaying, because the panitumumab and irinotecan I was taking weren't doing the job of stopping or shrinking those tumours. On the other hand, I may have been misinformed about there being four metastases; there might be only two. I'm not sure and will have to ask. They are small, and not growing extremely fast.

In addition to that, now I can avoid spending two days in bed every two weeks, feeling like I'm going to throw up. My pervasive dry skin and facial rash, although under control, should now abate as the chemo drugs flush out of my system. Finally, since it will take a few weeks to figure out and schedule my next treatments, whatever they are, I'm taking the chance to try to have my ileostomy surgically reversed, so that my intestines function normally again for the first time in well over a year and I can ditch the colostomy bags forever. That could happen in less than a month.

We found all this out a couple of days ago, which happened to be my wife Air's 40th birthday. Fortunately, we'd already had a big family-and-friends barbecue last weekend to celebrate that (plus my mom's upcoming 70th), so the news only dampered the day itself, not the party. Last night she and I went for dinner at the beautiful Horizons restaurant here in Burnaby, to mark her birthday and to celebrate at least the end of chemo, for now.

This all reminds me that while my medical team and I keep looking for a cure, something to destroy the cancer completely, more likely we're just buying me time. How much time, no one knows. Months? Years? Right now, other than the dry skin, I feel better than I have at any time since my diagnosis in January 2007. I feel less like a dead man walking than ever, but the future remains a mystery.

Yet on September 11, another dreadful anniversary, the weather here in Vancouver is once again beautiful, and there's laundry to be done. Time to load up the iPod and get to it.

Labels: anniversary, birthday, cancer, chemotherapy, death, pain, surgery

I haven't cried for awhile. Back when doctors first found my cancer, more than a year and half ago, I cried frequently. Later in the year, after I'd been through chemo and radiation and surgery and catastrophic weight loss and side effects, I would sometimes wake in the night and sob in my wife's arms, "I don't want to die."

I still don't, and I still have cancer. I'm still taking chemotherapy every two weeks, lying in bed for a couple of days and throwing up. But it has become a grinding routine, a long, protracted war against my body's own mutant cells, rather than a fierce battle.

I wish I cried more. I'm not holding it back. When it comes, crying is a great relief. I feel alive.

But I think I'm a bit numb to the threat of death now—I could still die soon, but it seems less likely, since my medical team and I seem to be fighting the disease decently, and I feel pretty well most of the time. My family and I talk about the future, and such talk no longer seems hollow.

I also laugh, especially with my kids, and my wife, and my band. I played another show with them this afternoon, and one thing I enjoy best about it is that pretty much every show, I laugh uncontrollably at least once about something.

It's true that I'm more sentimental now, and get misty-eyed at times when I might previously have been stoic or cynical. Sometimes it's just when I look at my daughters. Sometimes it's when I see pictures from Mars. Sometimes it's when I'm writing a blog post.

Labels: band, cancer, death, family, music

I realized a little while ago that's it's been well over a year since I felt any symptoms directly from my cancer. Since my surgery in July 2007, my main intestinal tumours (which gave me a lot of pain) have been gone; what remains are some small metastatic growths in my lungs.

Those are obviously bad, especially if they keep growing. But I can't feel them at all, even when I'm riding my bike, hiking around on top of a mountain, or otherwise exercising my lungs. Yes, I'm weaker than I used to be, and pretty tired a lot of the time, but the discomfort I've had over the past year has come from surgery recovery, chemotherapy, various medication side effects, and so on.

The doctors, nurses, and I are fighting off a deadly disease that I can't feel with techniques that I definitely can. So I'm lying in bed today, exhausted and nauseated, but that's from the medicine, not the cancer. It's necessary, essential even. But it's weird too.

Labels: cancer, chemotherapy, pain, surgery

Two weeks ago I complained about the nasty rash and pimples I got from my first dose of panitumumab, a new anti-cancer drug. I was afraid the rash would persist.

A few days later it started to recede, though I still looked pretty harsh the following week. I expected it to come back with the next treatment, but I'm pleased to report that, exactly the same period after my second dose of the drug, my face is merely dry, and most of the pimples there are gone. What a relief.

My upper torso, including my chest, shoulders, and back, is still completely saturated with rashy dots, but that's not nearly as itchy or irritating, and certainly less embarrassing, than having them all over my face. I just keep a shirt on all the time.

In fact, I've been avoiding going bare-chested so much that my kids were quite shocked to see the rash today after I got out of the shower. I need moisturizer and sunscreen still, but whether it's just my body getting used to the drug, or better effectiveness from the hydrocortisone cream and minocycline antibiotics, things are way better this time around.

Oh, and thanks to Tris Hussey for the photo of me, pimples minimized.

Labels: cancer, chemotherapy, ego

First of all, before you read on here, please head over to Raul's and Rebecca's sites, as well as others who are doing 24 hours of continuous blog posts for Blogathon 2008 today. Raul, in particular, is raising money for cancer research, and so both my wife and I have contributed guest posts to his site. Here's mine. Read it and then maybe donate some money if you feel like it.

Anyway, we're coming to the end of our idyllic week here in Whistler (courtesy of my aunt and uncle who own the apartment), and I'm glad it's been generally restful, because the brand new rash on my face that has developed here (an expected and inevitable side effect of my new panitumumab anti-cancer drug) is harsh and brutal and it sucks.

The pimples and redness came on shockingly fast (as they are supposed to), mere days after I received my first dose of the drug last Thursday. They're worst on and around my nose and on my forehead, although they extend up under the hair on my head, down my neck, across my chest and shoulders, and onto my upper back. The rash looks pretty gross, and sometimes feels even worse. Bleah.

KA asked me how sensitive my skin is. The best description is that feels like a permanent sunburn, and my nose in particular feels like a big raspberry. Sometimes I'd like to take a belt sander to the entire front of my head, but no, I shouldn't squeeze or even scratch the pimples. The best I can do is the occasional gentle rub, and a wet washcloth from time to time. I do have hydrocortisone and antibiotic cream that I apply twice a day, and they help. The L'Occitane cream my wife Air got me also does some good, though it stings at first.

What's dismaying is that my face might actually look better smeared with white goop than it does without—the cream helps hide the rash itself. Until now, I don't think I've ever in my life been genuinely embarrassed by my appearance. I didn't have bad acne when I was a teenager, and while I've always been a nerd, I've thought of myself as a decent-looking one. Now I walk around Whistler and consider whether people are looking at my face and wondering what's wrong. When I buy something at a store, I have to remind myself to look people in the eye, because my instinct is to turn my eyes down and avoid a direct gaze.

But when I look in the mirror, I realize that while the rash does look gross (pimples, dry skin, little scabs, ew), it feels worse than it looks, especially from a distance, and I shouldn't be too self-conscious about it. And I'm sure glad my wife and kids are still willing to hang around with me.

Overall, it is extremely unpleasant, considerably worse than I expected. I'm amazed how quickly the rash came on after I started getting the medication—but the people at the Cancer Agency did warn me, and said that a serious rash is a sign than the panitumumab is doing its job. It's some nasty shit. Hopefully, it's even nastier to the cancer than to the rest of me.

Labels: blog, cancer, chemotherapy, ego, family, pain, whistler

Here's where we were today:

It's been a good time. Huge thanks to my relatives Christine and Norbert for offering us the place to stay in Whistler this week. This place is awesome, and the weather has been spectacular.

One annoyance: as our trip began, the main side effect of my new panitumumab cancer drug has kicked in with a vengeance, and that consists of an acne-like rash on my face, neck, and upper torso, particularly around my nose and forehead. It feels like a constant crinkly sunburn, and looks like I'm a particularly unlucky pubertic teenager with hundreds of tiny whitehead pimples. Yuck. I'll have to get used to it.

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

The barfing came on last night, around 10:30 p.m., after a shower. I only threw up once (in the kitchen sink, which was pleasant). But that was after a whole day feeling that I'd like to. Today I went for my blood test at the cancer agency, but otherwise I have slept almost the entire day away, zonked out by the anti-nausea drugs. I hope things improve tomorrow, since this reaction to the chemo blast seems to be lasting longer than my previous ones.

Labels: cancer, chemotherapy, fatigue

It's been close to two months since I last had a chemotherapy treatment, after about seven months of if every two weeks. I've been grateful for the break: other than the old bowel-blockage thing last month, I've been feeling pretty good.

There remains no evidence of any recurrence of cancer where surgeons removed the major tumours from my intestine exactly a year ago. However, the metastatic lesions in my lungs—there are four, created when cancer cells made their way through my body and somehow took root there—continue to grow very slowly. They are all small, the largest one being only 1.4 cm across, less than the diameter of a dime.

But that's still too big, and slow growth is still growth. So starting tomorrow, we're attacking it with one of the same old chemo drugs (irinotecan, a.k.a. Captosar) and a new one (panitumumab, a.k.a. Vectibix, manufactured by Amgen Pharmaceuticals). I'll be taking them intravenously every two weeks for some time to come—how long depends on whether they are effective.

This is a clinical trial, a scientific study, so the first and second treatments with it will be time-consuming: on Monday I have to be at the clinic at 9:00 a.m., take a blood test, have the treatment, and then have more blood tests one hour, two hours, four hours, six hours, and eight hours later, so I won't go home until 8:00 p.m.  And then I must come back around 11:00 a.m. for the next three days for more blood tests. Then, two weeks later, the same thing.

But after that it will simply be the treatment every two weeks, and this time I don't need to use the "baby bottle," so that will be a relief. I hope that the side effects won't be too bad. Apparently I am likely to get some skin rashes and pimples within a week or two, but that might be the worst of it, other than the usual short-term nausea and longer-term hair loss. (And my hair has been coming in so nicely too.)

And I'm sure a lot better than I was a year ago!

Labels: cancer, chemotherapy, hospital, surgery

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, our tap water is a little cloudy following the heavy rain and melting snow earlier this week. There is no boil-water advisory, as there was last year when this happened, however there is this:

Those with compromised immune systems due to HIV or who are undertaking chemotherapy [my emphasis - D.] or anti-rejection medications should always use drinking water that has been boiled or treated to the same level as boiling.

Damn, that's me, as my parents and wife pointed out. So no tap water for me. My immune measurements have been okay so far, but that can change—I've only had four of my planned twelve chemo treatments for this round.

Some people might take that, like advice to avoid drinking water in Mexico, as a good reason to have more beer or Scotch¹ or something, but these days alcohol makes me feel almost instantly like crap, so it's bottled or boiled water and diet pop for me.

At least I can still take a shower. And go to my company Christmas party tomorrow. As designated driver.

¹ Thank you again to everyone who came to my birthday party back in June and brought Scotch whisky as a gift. I have enough for several decades now, I think, especially at the rate I'm (not) drinking it at the moment.

Labels: cancer, chemotherapy, vancouver, weather