Penmachine

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

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

Except for the occasional vacation or trip to the hospital, I've written on this blog most days since October 27, 2000 (and more intermittently for three and a half years before that, before it was a blog). Including this post, that's 3446 entries in 3152 days, or an average of 1.09 posts per day, through raising our kids and work and travel and illnesses and treatments galore.

For most of my life I've written compulsively. In the words of Tim Bray and Mark Pilgrim, I write this blog because I "can't not write." Or at least I did. But today it feels forced, an annoyance, something it should not be.

I need a break. So I'm taking one. I don't know how long.

I'll probably still post to Twitter and Facebook, but not as much. I'll be on email too, though I plan to unsubscribe from a lot of lists and notifications that clutter up my inbox, and maybe try to pare down the 1800 messages sitting there. There will be photos on Flickr. Maybe I'll find a way to bring some of that material over here automatically. We'll see.

Other things also won't change. I plan to continue co-hosting with Dave Chick the Inside Home Recording podcast once a month or so. I won't be offline or off the grid. If you subscribe to my RSS feed you'll see when something new appears here, whenever that might be. I'll let you know if there's any big news.

In the meantime, it's almost summer. Go outside. Be with your friends and family. Talk. Love. I plan to.

Labels: blog, facebook, fatigue, flickr, twitter, web

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

UPDATE: By some miracle (and no, I don't know what I did), one last try at installing the software worked at around 12:30 p.m., and I managed to load on some video and audio, plus podcasts, onto the Zune device. I'm going to transfer a bunch of my daughter's MP3s and let her give it a spin to see what she thinks of the Zune now that it's working, more than 24 hours after I first started trying.

It's been a few years since I used Windows regularly, but as a typical Mac fanboy I do have to ask: do those of you who run Windows regularly actually have to put up with this level of frustration all the time?

Right now I'm staring at the Zune installer program screen, telling me for the fourth or fifth time that it "Can't access Microsoft Update" (I can access it fine by going to the website, by the way). This is on the second computer I've borrowed from my dad to try to install the Zune application. Yesterday I spent something like nine hours (on and off, mostly off, thankfully) trying, repeatedly failing, and then eventually getting the Zune software to install on his older Windows XP laptop. And then, at the end of the day, while the computer itself could see that the Zune player was connected, the software never did, and I could never sync anything to be able to play it.

Having worked for a Windows software developer at one point, I have decent Windows tech-fu techniques, which I employed during yesterday's mess, even creating a new user account before the software successfully ran. Yet here I am again, needing to put the same skills to use once more the next day to get a Microsoft product working with a Microsoft operating system, because yesterday all of my ninja skills weren't good enough to get the music player to, you know, play music.

It's a pity. I like the Zune as a piece of hardware. It's cute, the packaging is nice, it seems well built, the premium headphones are really quite elegant (if bass-heavy). Yes, the Zune design team has tried way, way, way too hard to ape the iPod Nano—the one that's two generations old now, by the way—even down to the "Hello from Seattle" etched into the back in place of "Designed by Apple in California." They've made the hardware as close as they can get to an iPod without getting sued, I think.

The Zune pad that replaces the iPod scroll wheel is good, and the onscreen interface is nice indeed, smooth and useful and (for once) different. What I've seen of it, anyway: I've been unable to do anything with it, not even listen to FM radio, because the Zune (unnecessarily, I think, like the iPod too) needs to be set up from a computer first. Which is my whole problem.

If you buy an iPod, is setting up iTunes on Windows this bad? I've never done it, but I may try just to see how the experiences compare. If it is, I'm sorry, and it's a wonder that anyone ever uses a portable music player. At this point, if I'd actually paid money for the Zune, I would have returned it by now, since for the past day it has been an attractive electronic paperweight, and not a sufficiently heavy one at that.

But for now, as I've been writing this rant, I've used one of my Macs to download the full Zune installer package and move it to my dad's XP laptop using a memory stick. It seems to be installing. Perhaps by the end of this paragraph I will know if the Zune software can see the Zune player, and maybe let it play some music or videos...

Nope. "INSTALLATION FAILED. Could not write the Zune Launcher to key \SOFTWARE\Microsoft\Windows\Current Version\Run." What a lovely experience, and waste of my time.

Labels: design, fatigue, ipod, microsoft, software, zune

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

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

More chemo today.

I have to admit, this is getting pretty old.

Labels: cancer, chemotherapy, fatigue

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

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

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

So far I have been pretty lucky with the side effects of this round of chemotherapy. I've had three treatments (of 12) since early October, and I still have my hair. (Not even any thinning yet.) I feel a bit nauseated for the three days of the treatment itself, but not long after I am merely a somewhat tired version of normal.

But there are effects. During treatments I get frequent hiccups. Outside that time I also sneeze pretty often. I have a consistently runny nose, and sometimes the discharge is a bit pink (yummy). And yes, I get tired easily.

I've also noticed that I'm more sensitive to temperature: hot showers feel hotter, and cold diet pop bites in my throat more than it used to. That may get more severe over time.

Other colorectal cancer patients I've talked to have had it much worse, even early in their treatments. Some have been relatively healthy through the whole cycle, while others started getting ill about half-way through. I'm hoping I'm in the former category.

In other words, so far so good.

Labels: cancer, chemotherapy, fatigue

It's not all that likely that any of the long-term side effects of chemotherapy (fatigue, hair loss, numbness, etc.) will show up on the first day, so it's no big surprise that I feel fine tonight after a few hours of medication at the Cancer Agency, and now a slow-infusing "baby bottle" hookup for the next two days. Here's the bottle:

Here's me wearing it:

I did have a bit of reaction at the Agency, but rather than the worst-case diarrhea, I merely developed a slightly runny nose and clammy, sweaty skin, which Lisa the nurse quickly handled with some atropine injections. Oddly, my blood pressure was also quite low (105 over 50 at one point). The systolic value isn't strange for me, but my diastolic is usually more like 70 or 75.

I'm also not sure whether I felt nausea. I was a little bleah a couple of hours after dinner, so I took an extra anti-nauseant just in case, but so far I feel much as I did yesterday. We'll keep an eye on that stuff.

For today's wacky links, we have:

• Vintage colour TVs (in the mid-1950s, a 19" colour television would set you back about $1100 USD—in 1950s dollars!)
• How to identify your iPod model (Apple has released between 32 and 34 in six years—the exact number depends on whether you count the latest Shuffles as new, and if the iPhone is an iPod or not)
• Colorectal cancer death rates are dropping (good news for me)
• Aquisition 2 is out
• Good quote: "Teaching biology without mentioning evolution is like teaching astronomy without mentioning gravity."

Labels: apple, astronomy, cancer, chemotherapy, evolution, fatigue, iphone, ipod, pain, science, television

About 13 hours from now, I start a new six-month round of chemotherapy, my first such treatment since back in May. This batch is intended to try to shrink the metastatic tumours in my lungs that spread from the original cancer in my intestine, which was removed in July.

I'm having a whole new fun regimen codenamed "GIFOLFIRI," which involves irinotecan (Campto), folinic acid (Leucovorin), and our old friend 5-FU. No oxaliplatin as far as I can tell. The irinotecan is the nasty one this time around, with risks of hair loss (maybe, not for certain, but I don't care much) and possibly drastic diarrhea, which can be treated, but only about 15% of patients get it, so they don't give the antidiarrheals to everyone. They're also giving me bevacizumab (Avastin, an artificial monoclonal antibody) again to see if it can slow or reverse the tumour growth.

All of that is for the metastases in my lungs, of which I believe there are four, and which are still small and not growing too fast. (I've noticed no decreased lung function, although I haven't been doing really strenuous things such as bike riding like I used to.) I'm just not sure how I'll react, or how I will feel in a few days.

On a cheerier note, I've been enjoying these old TV theme songs (via JWalk), especially S.W.A.T. and of course the immortal Mission: Impossible (MP3 files). And crazy people who jump off mountains are fun to watch too.

Labels: cancer, chemotherapy, extremesports, fatigue, pain, television

Chris Pirillo has posted video of my piped-in appearance (from my bed) at Gnomedex last month:

A few people asked about it, and now there it is. Thanks, Chris.

Labels: cancer, fatigue, gnomedex, ichat, macbook, pirillo, ponzi

I did too much yesterday: I walked the kids to school and came back, then went (ironically) to a relaxation session at the Cancer Agency, followed by lunch, a bit of shopping, picking up the kids, and home for dinner, then off to the Lab With Leo 100th episode party in the evening.

And then, today, I paid for it. I took the kids to school again, then came home and went to sleep. For two hours. Then I woke and had lunch, and watched a bit of TV to try to wake up, which didn't work. I fell asleep again for another two hours until my wife brought the kids home—along with an awesome sugar-free slush drink for me. I feel a lot better now, but I still need to pace myself. Maybe one or two activities a day is still a good benchmark.

Time to get dressed.

Labels: cancer, diabetes, family, fatigue, food

Now that Labour Day is here, it's time to refine the plans:

1. Sometime this month, I'll have a portacath inserted in my upper chest to prepare for more chemotherapy in October.
2. I have numerous appointments with oncologists, socials workers, pain management folks, and so on, to prepare for the next phase of treatment.
3. I'll also try to gain more weight. I'm up above 160 pounds (72 kg), which was easy, but going further seems to be a bit of an effort—I need to eat more than I might want to put on weight consistently.
4. Once I've regained some more strength around the end of the month, we'll start more chemotherapy.
5. I'll be getting three different drugs through the portacath, in a sequence that has me one day at the Cancer Agency, two more days of treatment at home, then two weeks off—for six months or so.

We've dealt with the cancer in my bowels. As far as we know, it's gone. The chemo is to address the metastases in my lungs. I hope we can get rid of those as well.

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

It turns out that the other antibiotic I'm taking, metronidazole, has fatigue as a side effect—just what I need. Yesterday I woke up, got the kids breakfast, and flaked around for awhile. Then we went to Ikea for a couple of hours. When we got home, I slept for another three hours before dinner. At 7:30 I slept again, all night, until almost 10:00 this morning.

I think I could sleep all the time given the opportunity. Most of the time, when I think "what was I doing 12 hours ago?", the answer is "sleeping." It's insane. Fortunately I'm only taking these pills for ten days, then perhaps I'll perk up again.

It would probably be fine if I weren't so tired to start with, but compounding the fatigue I already have is more than I'd prefer to deal with. Maybe a bunch of coffee would help.

Labels: ambulance, antibiotics, cancer, diabetes, fatigue, hospital

Yesterday turned out not so well after all. Turning corners is sometimes tricky. Around 4 in the afternoon I started getting diabetic hypoglycemia—low blood sugar—which does happen from time to time. I've been diabetic for 16 years, and my usual treatment is a simple can of Coke, which usually takes care of it quickly.

Not this time. I was unable to stabilize my blood sugars with Coke, with snacks, with juice, with brown sugar, with pudding, or with anything else. My wife became worried about me, as did I, because unchecked hypoglycemia can make me pass out.

Eventually we called an ambulance, which took me to Burnaby Hospital's Emergency ward, where they stabilized me and gave me some food. A few hours later the doctor discharged me and I went home.

After I had a bath and calmed down some, I read through the customer information for the couple of new antibiotics I started taking, which were the only new things that had happened yesterday.

Sure enough, one of the two drugs "may affect your blood sugar." No kidding. I had specifically asked my prescribing surgeon whether everything was okay for diabetes, and had mentioned it to the ambulance crew, and the nurses, and the doctors at the hospital, but no one knew about that. Just a reminder to be vigilant about your medications—the professionals don't know about every possible interaction.

And I'm fine now, just tired again.

Labels: ambulance, antibiotics, cancer, diabetes, fatigue, hospital

It's been more than six weeks since my major cancer surgery, and only now do I feel like I've turned a corner in my recovery. Not that I'm "all better," but I'm improving, and at a better pace.

For instance, I was able to walk with my daughter and our friends' dog a full four blocks from our house and back, without using my cane or a wheelchair. I was tired when we returned, but I made it. Some of my pain and other symptoms are gradually going away. I may even be ready to start my next round of chemotherapy soon, which is something I am looking forward to—an odd thing to say. I've gained some 15 pounds from my record low in the 145-pound range, so that's a relief, even though I'm still a long way from my 200-pound average of the past several years.

But the fatigue, huge and oppressive, is my main remaining side effect, and it isn't changing much. Yesterday I drove the car, had a doctor's appointment, and went out for dinner. After that I had to sleep for four hours to recover. Today I took the kids for breakfast at McDonald's, and had to lie down for an hour afterwards too.

So it's a shallow corner, but I'm turning it. I think I'll be able to walk my daughters to school in a couple of weeks. That was my goal.

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

As I've mentioned, even six weeks after my surgery I continue to have some pain for which I'm taking codeine. This past Monday I had another CT scan, ordered by my oncologist Dr. Kennecke, to see if there was anything wrong.

Today I found out that there is something wrong, but in the scheme of things it is very minor and nothing to worry about, which is a great relief both to me and to my family. As Dr. Kennecke wrote in an email...

...there is a fluid collection beside the anastomosis and a fistula (a connection between the bowel and the fluid collection beside the bowel). Unless there evidence of infection, It does not look like this needs to be drained, as it seems to be draining itself.

So, depending on what his consultations with my surgeons reveal, it may or may not be useful to drain the buildup. But it's not a tumour—not more cancer, which of course was a worry. If all I need is a nasty needle to drain some fluid, I can handle that.

Funny how chemo and radiation and surgery and complications can make a potential fluid-draining needle seem like a small thing now. Last year a procedure like that would have seemed like a big deal.

I'm also pleased that my piped-in video appearance at Gnomedex went over so well with so many people, including Scott Rosenberg, someone whose work online I have admired for a long time. Organizer Chris Pirillo has some great things to say about his event overall:

Gnomedex is just about as close to a un-virtual blogosphere as I’ve ever seen it. [...] How does one attract the blogosphere’s thought leaders without hammering through the topics that are (quite frankly) already yesterday’s news—or completely irrelevant to people who don’t live and die by whatever is on TechMeme or its vertical equivalent? How does one equally attract those who are striving to become thought leaders, or those who love following those thought leaders?

One thing that makes Gnomedex worthwhile is that Chris, even just a couple of days afterwards, when he could just be sleeping it all off, is working hard to figure out how to make it better next time.

Labels: cancer, family, fatigue, gnomedex, pain, surgery

I love attending the annual Gnomedex geek conference in Seattle, but this year I just wasn't in shape to do it. So we did the next best thing: organizers Chris and Ponzi Pirillo asked me to give a little talk and answer some questions via live video chat yesterday, and I think it worked rather well.

Even among the digital leading edge who attend Gnomedex, being as wide open about cancer diagnosis and treatment online, as I have been, is still a bit unusual, but I hope that my appearance there encourages people not only to use the Internet as a way to get information and support, but also to get themselves checked out for the various diseases they might be at risk for, so that they can maybe get treated early and not have to go through all the crap I have.

One of the audience members who said hi (I think her name was Dawn) also reminded me not to get consumed by all this, not to let my condition become my life, and I think that was good advice. As I've said before, I'm trying to come back to life, to see movies and have fun with my family and friends, and to blog about something other than cancer from time to time—and more often as I get better.

Today I cooked some bacon and eggs and made coffee, which is the first time I've had enough energy for that. But yesterday I spent almost the whole day (including my video chat session) in bed. Maybe later today I'll get out for a walk, or go to the mall or a restaurant. I just have to see how I feel.

Thank you to all the Gnomedexers who attended my session yesterday. Once again, your support and good vibes humble me.

Labels: cancer, fatigue, gnomedex, ichat, macbook, pirillo, ponzi

Went to see The Bourne Ultimatum this afternoon with my wife. It was my first movie out since my surgery, and well worth it. (I watched the previous two films, which I hadn't seen, on DVD last week.)

I do have one complaint: director Paul Greengrass does a great job choreographing the fight and chase scenes so that you understand what's going on despite the chaos. But the handheld camerawork is sometimes so kinetic, bouncing and shaking and twisting, that in my current somewhat discombobulated state I actually had to close my eyes a few times to keep from getting dizzy or disoriented. A static camera is not always a bad thing.

The Bourne films are also pretty bleak, almost nihilistic. Still, I recommend seeing them if you haven't.

By the way, I'm still weak enough that after sitting in a chair watching a movie for two hours, I had to come home and lie down for two hours.

Labels: bourne, fatigue, film, movie

We've done a lot in the past couple of days—or a lot for me, anyway. Yesterday I not only visited the Pain Clinic at the B.C. Cancer Agency (where I got a prescription for some longer-acting codeine so I don't have to take Tylenol 3s so often), but then went for dinner with my family at the mall and got myself a haircut. We were out of the house for more than five hours, which is my longest outing since the beginning of July.

I paid for it later with some pain in the middle of the night, but it was worth it. Similarly, today we visited the Agency again, where I talked to a social worker and generally got some stuff off my chest. But a couple of hours away was enough today, and I had to come home and lie down once more.

But I'm gaining weight steadily, despite the fatigue, close to ten pounds already. The steps are small, but they are steps. It's like coming back to life, bit by bit.

Labels: cancer, family, fatigue, food, pain, surgery

As of today, it has been one month since my colon cancer surgery. It seems like much longer. In that time I have been in the hospital for a week, out for a few days, back in for another ten days, and now home again for a little over a week.

A community health nurse visited again today. He examined my bedsore, which is healing fine, and generally checked me out. He reminded me that healing and recovery will be very slow—that with my ileostomy, I am absorbing food less efficiently than before, and after my spring radiation and chemotherapy treatments, tissues take extra time to mend as well.

So it feels very slow to me, and I feel guilty sleeping much of the day, but the medical professionals think it is all normal. My body has been through a lot, and I am gaining weight gradually. Each day I try to walk a bit, and to eat heartily, so I will get better very gradually. I still do not feel or look like myself, but I will come back. I know it's hard on my family too, but it is reassuring to know that nothing is seriously wrong.

Labels: cancer, family, fatigue, food, pain, surgery

I haven't blogged, or read or responded to email, or done much on Facebook, because I am so, so tired.

The biggest bothers of recovering here at home are that fatigue, which is quite unbelievable (walking a block and a half is like running a marathon), and some persistent pain I'm having in my butt, part of which is due to a minor bedsore I developed during my last hospital stay. I went to the Cancer Agency today to talk about that, among other things, as well as to talk to a counsellor for the first time in my life. I'm maybe half-way through my treatment now, and it is a grinding slog, so it will help to have a professional to consult about it.

Tomorrow I'll also talk to Dr. Phang, my surgeon, about the pain and what I should do about it. It's all about the doctors and hospitals and clinics right now. And eating. I'm eating a lot to try to gain some weight, though I'm not sure if that's working yet.

Have a good long weekend. I'm hoping mine's a bit of an improvement. Don't forget that my dad is also blogging about how I'm doing, sometimes in more detail.

Labels: cancer, fatigue, hospital, ileostomy, morphine, pain, surgery