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

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

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

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

There's going to be a podcaster meetup this Wednesday, March 12, 2008. Details:

6:30 p.m.
The End Cafe
2360 Commercial Drive (just north of the SkyTrain)
Vancouver, British Columbia

Alas, I won't be there—I have yet more chemo that day, so that night I'll be in sad shape, curled up in bed watching The Food Network, or sleeping. But my co-host Paul plans to be there, and I'm hoping some of the rest of you will too—if you're not at SXSW in Austin, of course.

You don't need to be a podcaster or blogger or whatever. If meeting other webby types is up your alley, head on down. Doing a little RSVP at upcoming.org or Facebook would help with planning, I guess, but you should also just be able to show up.

Have a drink or two for me, will you?

Labels: blog, chemotherapy, geekery, meetup, paulgaray, podcast, vancouver

I'm not sure if she's noticed, but after more than 12 years of marriage, and despite chemotherapy's deleterious effects on my vim and vigor, I still quite regularly check my wife out. Wink wink.

Labels: chemotherapy, family, love, sex

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

Today's weather was as unpleasant as Vancouver winter gets: just above freezing, windy, with driving rain. Water sluiced down the gutters, and even brief jaunts outside, from the house to the car, or standing at the gas pump, felt bitter. Having something of a chemotherapy hangover from last week didn't help. I slept for four hours this afternoon in a grey funk.

The kids had trouble getting to sleep, in part because the house was creaking in the wind. I imagined what it must have been like to live in this climate in a Salish or Haida village 150 or 200 years ago—despite the richness of our landscape, surely even those First Nations people would have huddled inside their homes in weather like this too.

Then, tonight, around 11:30, I was getting ready for bed and looked out our front window. The wind had died down, the streets were dry, and the sky was clear; I could see stars and, in the klieg lights of the ski slopes, fresh snow on the North Shore mountains. It was quiet, and beautiful.

Labels: astronomy, chemotherapy, family, 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

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.

I mentioned that yesterday, in the shock of hearing about the death of my friend Martin, I hadn't yet cried. That changed today, and what prompted my tears was something small that I'd seen earlier this week and forgotten about.

As I've done since 2003, just before Christmas on December 23, I had sent out a holiday e-card (a photo of my family) to several dozen of our friends, colleagues, and acquaintances. Martin was on the list. He had replied with a brief, somewhat mistyped Merry Christmas message and a mention of his upcoming planned New Year's party, sent from his BlackBerry.

The next day, long before I heard the news, I had read his reply among others from our friends, filed it away, and forgotten about it. Today, as the snow fell outside and I was deleting some of the bounced emails from defunct addresses on my e-card list, by chance I came across his message again. He'd sent it at 11:44 p.m. on the 23rd, and sometime between then and the time I first read and filed it on the 24th, he had died. It must have been one of the last messages he had sent. I went cold. It was like an email from a ghost.

That was too much, and I went into the bathroom and wept. I blew my nose. The tissue was bloody from the side effects of the chemotherapy that is keeping me alive. Not much later, I cried again on my wife's shoulder when I told her the story.

Tonight my daughters and wife and I had dinner with Simon, the friend who told me the bad news, on the lower slopes of the North Shore mountain where he and Martin and others had once shared a house—and where Martin had hosted my bachelor party in 1995, at the end of a night exploring empty storm drains under the City of West Vancouver. At dinner, Simon and my family and I drank a toast to our lost friend. We're still stunned, and we weren't sure what to say.

Since my post yesterday I've heard from several people to whom Martin was important. I realized that for many of us, he was a pivot in our lives, someone who, though he never reached age 40, affected the kinds of people his friends have become, and for the better. Perhaps that is what each of us should strive to do.

Labels: chemotherapy, death, family, friends

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

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

My wife and I made up a Christmas shopping list today. We're trying to cut down on total spending craziness, and so far, thanks to her industriousness, we're doing pretty well with that so far.

Right now she's out taking care of some more of the list while I flake out at home with my chemo bottle. We'll probably put up the tree this weekend when I'm feeling a little better.

Here it comes, everybody, ready or not.

Labels: cancer, chemotherapy, family, holiday, shopping

There's a clue in the photo.

Normally a cold wouldn't be a big deal, but tomorrow I have another chemotherapy treatment. I called the Cancer Agency wondering if I needed to take any extra precautions, either for myself or to avoid infecting anyone else.

They said a simple head cold was indeed no big deal, and that I should just rest, drink fluids, and have some soup. (There's modern medical science for you!) I'll go in for the treatment tomorrow as usual. I expect a compound crappy feeling by Thursday, when the chemo usually feels its worst.

I will also take this opportunity to reinforce that Tylenol Cold really works. I no longer have the pounding sinus headache I woke up with.

Labels: cancer, chemotherapy

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

There's lots of grey hair in the soul patch I've been growing. Maybe I can attribute some of that to chemotherapy, but I think most of it is just age:

Labels: age, cancer, chemotherapy

You know what's worse than having a hangover? Having a hangover when you didn't drink any alcohol. Last night my wife and I trekked to a pub in North Vancouver to see our pals in the Adam Woodall Band—I've played in other bands with Adam over the years, and also used to run the AWB website, so we like to see them when we can.

It was my first outing to a bar in a long time. We had lots of fun at the Queens Cross Pub, and the band was excellent, as usual. In addition to being designated driver, I'm still on chemotherapy, so it's not wise for me to get drunk. Indeed, I chose not to have any alcohol and all, sticking with Diet Coke and coffee, plus some fine Buffalo chicken wings and a steak sandwich.

Yet today I feel like complete crap. I woke up near noon with a headache, low blood glucose, body aches—all the symptoms of a hangover. So I'm paying the price, though I'm not sure what the price is for. The chemo makes me less resilient to staying out late than I used to be, I guess. Still, I'm glad we went.

Go buy the AWB's album Silver Ring, by the way. It's good.

Labels: band, chemotherapy, music, pain

I don't often get hiccups, and they weren't high on the list of possible chemotherapy side effects, but it turns out that at least three of the drugs I'm taking (5-fluorouracil, irinotecan, and the antinauseant dexamethasone) can cause them.

And I've got 'em. They aren't nasty or continuous, but they have come and gone all day, along with a bit more of that runny nose. I'm hoping they'll go away once I get the chemo bottle removed tomorrow afternoon. But as side effects go, the hiccups are mild for me, and I certainly prefer them to most of the alternatives.

Labels: cancer, chemotherapy

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

A few people have asked me how the portacath (or more simply, "port") that I had surgically implanted last Thursday actually works. I wondered that myself until the nurse explained it before wheeling me into the operating room.

You can see from the photo at Wikipedia that the device comprises a small, round, dome-shaped reservoir—about the diameter of a Canadian dollar coin—and a tube about 30 cm long attached to it:

Dr. Chen, my vascular surgeon, put the reservoir just under my skin on the upper right portion of my chest, under my clavicle, then threaded the tube up into my jugular vein and down again so that the outlet is near my heart.

All of that is subcutaneous, so that the reservoir is a big bump under my skin and the tube is just visible in my neck, as you can see in my portacath self-portrait. (Beware, you have to look at my shirtless, half-shaved, still scarred and bruised chest.) Right now it's all still a bit itchy as the scars heal and the stitches dissolve, but it should be pretty comfortable in a few days.

Now, what will happen next Monday when I start chemotherapy again is that a nurse at the B.C. Cancer Agency will put a needle through my skin into the centre of the reservoir's plastic dome, and the chemo drugs will feed through there. After sitting for a few hours getting my first infusion at the Agency, I will be sent home with a small bottle also attached to the same needle, which I will keep on for two solid days until a health nurse comes to remove the bottle and needle and flush out the portacath with saline solution and heparin to keep it from getting clogged.

For the following 12 days or so, I just have the bump under my skin again. Then I go back to the Cancer Agency and start the process over. Lather, rinse, repeat for three to six months. Rather than having to start a fresh intravenous drip every time, the nurses can simply plug into the portacath, which saves pain, awkwardness, and effort, and lets me take the 48-hour infusion home with me instead of having to stay at the clinic, which is a bonus.

Assuming the chemo treatment works, once it is done some months down the line, a doctor can remove the portacath again and I will heal up with just some minor scars.

Any questions?

Labels: cancer, chemotherapy, surgery

On Thursday, I spent a few hours at Vancouver Hospital in order to have a portacath inserted. It was a relatively minor surgical procedure, involving only some local anaesthetic and a bit of tranquilizer. Dr. Chen the vascular surgeon (coincidentally, the same guy who was supposed to treat my varicose veins in February, before my cancer diagnosis derailed things) put the port under my skin so that when I start chemotherapy in a couple of weeks, the nurses won't have to start a fresh IV every time I go to the cancer clinic.

Now I have a couple of big nasty bandages and the red stain from surgical disinfectant on the shaved right portion of my chest for a few days—I'm not allowed to shower or get the area wet until it's healed up. Compared to the major surgery and other things I've gone through in the past few months, this procedure was barely a blip.

Of course, as always, my lovely wife picked me up at the hospital. She has been amazing this year, shuttling me around and keeping the house running and the kids clean and clothed and fed and loved, as well as working and podcasting and helping out her friends too, while I've bounced from cranky chemoradiation victim to emaciated hospital patient to cane-toting recovery guy (with chemo coming again soon). And she still loves me, even as my treatments turn me into a half-mechanical cyborg.

She's the biggest reason I want to fight this disease and win. When we got married twelve years ago, I planned to grow old with her, and that's still what I so desperately want to do. Our kids, my parents and relatives, my friends and colleagues—they are all important too. But my wife, my partner, is the person I love and need the most.

I may not show that or say it as much as she deserves, but having her here with me is keeping me alive as much as any of the drugs or surgeries or blasts of charged particles. She's The One, and always will be.

Labels: cancer, chemotherapy, family, love, surgery

I received an email today from someone who has both had cancer and been a close relative of someone who died from it. She reinforced, like others did, that being the relative was much more difficult.

Almost every day, my mom tells me of emails or letters or phone calls from people—some of whom I know, some of whom I've never met or hardly even know about—wishing me well and offering sympathy and support and whatever help they can. My parents and my in-laws, my aunts and uncles, my cousins, parents of my children's friends, and most of all my kids and my wife—all have done that and more.

My relatives and friends probably need as much support as, or more than, I do, because much of the time they feel there is little they can do. They send me suggestions, and help me when I feel bad, and pick up the huge amount of slack I'm leaving when I'm sleepy or sick. But they can't cure the cancer, can't even fight it the way I have to. They are spectators, and that must be hard.

So cheers to all of you. I don't often thank you the way I should, but I think you might understand why I'm a little distracted most of the time.

Labels: cancer, chemotherapy, ego, family, friends, pain, surgery

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

Hey, Scott Rosenberg mentioned me in an article in The Guardian (thanks to Suze for finding it) today. Thanks Scott.

I met with my oncologist Dr. Kennecke today, and it looks like I will start more chemotherapy in a little over a month. Oddly, I'm looking forward to that.

Labels: cancer, chemotherapy, ego, geekery, web

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

I now know why I was getting those mixed messages yesterday. Today, Dr. Kennecke, my oncologist at the B.C. Cancer Agency, told me that he looked at my CT scan results from last week, and:

1. Despite the chemotherapy and radiation treatments, the cancer in my rectum has grown, not shrunk.
2. The spots in my lungs were not artifacts, but multiple further tiny tumours, showing that my cancer has metastasized (i.e. spread beyond its site of origin).
3. I therefore now officially have stage 4 metastatic colorectal cancer.
4. The surgeons are going to perform my operation as soon as possible, maybe next week.
5. I will have followup chemotherapy after that to try to address the lung metastases ("mets").
6. The median survival rate for people in my situation is two years. If the doctors can successfully remove the rectal tumour and address the lung mets, my chances of surviving five years are somewhere under 30%.

To boil it down: my cancer has grown and spread. My goals now are to see the Winter Olympics come to Vancouver in 2010, and beyond that to renew my driver's license when it expires again in five years. But while my medical team and I will do everything to try to make that happen, there is a significant chance I might not live that long, that I might be dead before five years are up.

It's a heavy day. I have cried, and laughed, and shared a drink and nachos with my friend Simon, and hugged my wife and my children and my parents. And I will fight on. It's a fine line between acknowledging and accepting what could happen and denying it. I'm naturally an optimistic guy, but I can't pretend that everything will be just fine, because it already isn't. The future, even the near future, is a mystery, and I must walk into it.

Fuck you again, cancer. Even if you win in the end.

Labels: cancer, chemotherapy, family, friends, radiation, surgery

Because I'm still recovering from all the radiation and chemotherapy and such, I can't attend the Podcasters Across Borders conference in Kingston, Ontario this weekend.

However, I was able to provide cross-country phone tech support to get Tod Maffin out of a bind when his Mac Finder kept repeatedly crashing right before his 8 p.m. (EDT) presentation. We even delved into some Unix permissions wizardry for good measure.

Good luck Tod!

And yes, I'm feeling better today, so I think it's okay if I gloat a little.

UPDATE: Here's a photo of the presentation Tod gave:

Labels: apple, cancer, chemotherapy, macbook, macosx, pab2007, podcast, radiation, techsupport, todmaffin

I just had a CT scan at the Cancer Agency (I'm blogging this from one of their public computers).

My doctors will look at it to see how much my cancer has shrunk since we hit it with radiation and chemotherapy starting in April, and use the results to plan my surgery on July 26, as well as any followup chemo in the autumn. I'm supposed to get a copy of the data CD so I can look at the scan myself using some free software that can open DICOM files, but apparently that has to wait until my oncologist Dr. Kennecke looks at it next week.

That means I have to wait, which will be frustrating. So right now I'm going to the post office, and to buy some bagels.

Labels: cancer, chemotherapy, ctscan, geekery, rad