A couple of months ago, my regular CT scan showed the first-ever shrinkage of cancer tumours in my three-year history with the disease, but I warned that, "I still have cancer, a lot of it all over the inside of my chest, but just a little less of it than I did a couple of months ago." One scan was not yet a trend.
But two could be, and my latest scan showed further shrinkage, with the biggest malignant blob in my left lung going from 3.1 cm down to 2.9 cm in diameter, which means it is smaller than it was in this scan from September:
Some of the others have also shrunk, while other smaller tumours have simply not gotten bigger. The aggressive and sometimes horrific chemotherapy I take every two weeks is doing something. I feel pretty good about that.
I'll remind you that this is not remission, not a cure, not me being "all better." I'm not sure if those things will ever come, and I've already beat the odds on this disease by staying alive as long as I have. What it does mean is that I'm likely to live a while longer yet (whatever "a while" is), which is the most realistic thing I can keep hoping for.
Oh, and happy Earth Day, everyone.
Today I had yet another CT scan, to see how my various cancer tumours are doing. It probably won't be evaluated by a radiologist for a few days, so it's unlikely to disrupt my next chemotherapy treatment on Monday. But I will communicate soon with my oncologist Dr. Kennecke to find out the results.
Am I nervous? Yes and no. I've been at this so long, having scans every couple of months for over three years now, that I don't find worrying about the results to be too productive. Still, last time the news was somewhat good. I'm a little nervous about that.
Once again, chemotherapy is doing bizarre and nasty things to my hair. It's thinning, while getting wiry and bushy and annoying. But rather than do the full Peter Garrett shave as I did two years ago, I went for my preferred buzz cut again:
My "before" look on the left was about as as good as I could make it appear, but there was still something vaguely Kim Jong-Il about it. I prefer the shorter version on the right, and I'll try to keep it that way.
A few years ago, before I got cancer, my doctor told me that an ideal weight for someone of my height and build was around 185 or 190 pounds (84 to 86 kg). Since I'd been hovering around 200 pounds for some time, I didn't worry too much about it. I was relatively healthy (despite my long-time Type 1 diabetes), eating reasonably well, cycling to and from work, and so on.
Then, of course, came the diagnosis. Over the next three and a bit years, among a hell of a lot of more alarming things, my weight fluctuated wildly—as low as 145 pounds (in mid-2007) and as high as 215 pounds (a couple of years later).
When I started on my latest chemotherapy regimen in December, at first I seemed to be losing about 5 pounds each treatment, which wasn't a good trend. I adjusted what I ate (i.e. more, when I could eat), and things stabilized. Guess where?
Yup, between 185 and 190 pounds, pretty much.
I would not advise this method to reach a weight your doctor recommends for you, however.
Most of my music career has had nothing to do with recording. It's been about playing live, mostly in a cover band. I've been doing that since 1989, more than twenty years. And I think that has now come to an end. Let me explain.
The first live performance I remember giving was on nylon-string guitar, to a group of senior citizens, I think at a music recital at a local church. It was organized through my elementary school, about 30 years ago. I was playing "Romanza," a well-known classical piece. And I forgot to tune my guitar beforehand. They applauded anyway, and I learned my lesson.
A few months later I played the same piece for a school talent contest. I remembered to tune this time, and I won the contest. But it was nerve-wracking. While I loved being in plays and skits, I found precision of live music performance a bit terrifying.
After I took my Grade 4 Royal Conservatory guitar exam in 1982, and then changed high schools, I quit guitar lessons, and stopped playing, and forgot everything, including how to read music. Every once in awhile I'd be startled by a string breaking inside the guitar case in my closet, but I never even bothered opening it.
I was inspired to take up music again at the end of 1987, when I discovered I could play drums half-decently without ever having tried it before. In 1988, my roommate Sebastien and I decided to form a band with our other roommates Alistair and Andrew, and my friend Ken. We'd all play instruments, and we'd all sing.
One day Sebastien and I went out with the agreement that I would buy a drum kit and he would buy an electric guitar. We got the cheapest, crappiest instruments we could find at pawn shops, and we were on our way.
The next lesson came when the bunch of us got paid for a show. But we didn't use our instruments, because it was a lip-sync contest at UBC. We were very silly and overblown, with costumes, makeup, props, a giant wall constructed of cardboard boxes (for a Pink Floyd song) and even some unauthorized flames (for our Alice Cooper impression). We won, and received $600. That was more than we'd get paid for a gig for quite a long time.
The lesson was that showmanship was important. Sometimes more important than musical skill or talent, especially when you're starting out and don't even know how to sing proper harmonies. You need to put on a damn show.
Our first real gig, in the spring of 1989, was at a year-end university party where we sounded great because the audience was really drunk. We played up the schtick, calling ourselves the Juan Valdez Memorial R&B Ensemble (though we played little R&B) and featuring Batman logos on our instruments and T-shirts, for no particular reason other than that we played the theme from the "Batman" TV show.
In some form or another, Sebastien and I have played in bands together on and off ever since, me on drums and him on guitar. We even tried it full-time for awhile in the mid-1990s, with a short-lived original act called The Flu we took as far as Australia, and cover bands with names like The Love Bugs, HourGlass, and The Neurotics to pay the bills. Sometimes we busked in downtown Vancouver for spare change. The direct rewards were a great way to learn what people liked, or at least what they'd pay for.
I left the band for a few years after I got married and had kids, but still guested when they needed a drummer in a pinch from time to time. I returned in the early 2000s when the gigs were more stable and better paying. We even got flown to New York City once for a single night's show in the fancy Sherry-Netherland Hotel.
The Neurotics, our long-running cover act, has had a rotating cast of musicians for years, but it's always been both about the songs—the classic hits people always respond to—and the show, including glittery jackets, wigs, fake British accents, improvised jokes, crazy stage-leaping, and intentionally mangled lyrics. This past decade, I can't think of a gig where I haven't laughed uncontrollably at least once at the antics of my bandmates, either onstage or in the dressing room between sets.
It's been so much fun that even after I found out I had colon cancer at the beginning of 2007, I tried to keep playing as much as I could. On Canada Day that summer, less than a week before my major surgery, and hopped up on morphine against the pain, I played drums and sang in the sun on the shores of Vancouver's Coal Harbour. Luckily our substitude drummer, Christian, was there on percussion, and could take over on the kit when I needed a break.
I didn't play again until the following February, having lost more than 60 pounds and then regained much of it. Once more, Christian and I spelled one another off, and I made it through. I kept playing through that year and the next, weaving around chemotherapy and immunotherapy treatments, more surgery, side effects, and fatigue.
But it was getting harder. In 2009, I had to turn down more and more shows. Paul Garay invited me to fill in on drums with his new band Heist that July, for a long daytime outdoor pub booking. It was great, but setup, playing, and teardown exhausted me for days afterward. I had to refuse an offer for a two-night gig a few weeks later.
The Neurotics had two shows, at the end of September and beginning of October 2009, a week apart. Sebastien suggested that, for the first time in years, I try playing rhythm guitar with the band, in addition to drums and percussion alternating with Christian.
I spent a couple of weeks woodshedding to figure out chords to songs I'd played for decades, but always on drums, and we had one rehearsal, because there were other new people in the lineup. Always confident behind the kit or the mic, I was nervous with the guitar around my neck, but I got through.
The last show was on October 3, at a golf club in Tsawwassen, one of Vancouver's southernmost suburbs. I did okay. My drumming and singing were fine, and I didn't miss too many chords on guitar. But the two gigs, even days apart, wiped me out. I slept a lot over the next few days.
Since then, I've returned to a more aggressive chemotherapy schedule to try to combat the cancer that long ago spread to my lungs and chest. I'm often nauseated, immensely sleepy, and unreliable. I can't in good conscience say yes when Sebastien calls me about an upcoming gig, because I can't promise I'll even be able to show up.
So, unless my cancer improves and I can take less nasty treatments—which isn't all that likely—I've had to admit to myself that my time as a regularly gigging musician is probably over. Sure, I might appear as a guest from time to time with some of my old bandmates at the occasional show, for a song or two, maybe.
But I've had to look at my studio at home now and think of how to rearrange it. For at least ten years it's included drums and PA equipment, cymbals and mics and stands and cases, packed on shelves and in bags, ready to load into the car. I think I can take them down, and maybe set them up to play at home instead.
It's no longer a storage room and preparation space for my job as a player, but a space for me to practice music as a hobby, when I feel up to it. I think now I may as well make it work that way.
Like many things I've had to jettison as my health has declined, I regret the change. But it had to come eventually. Even if I could live to 95, I don't think I would ever be like Les Paul, gigging until weeks before his death of natural causes. But I also didn't burn out and die drunk in a hotel room on the road somewhere, like others have.
The choice to stop playing live has been forced on me, but at least I get to make it. And I still have music all around me.
Besides, if my kids ever want to start a band after all their years of piano and singing lessons, then the rehearsal space is right here. And they don't need to buy a thing. Plus, I can teach them about how to put on a damn show.
After many a joke during the Winter Olympics about how there was no snow here in Vancouver in February, we actually got our first proper dump of snow—less than two weeks before the start of spring. My daughter Marina photographed it.
P.S. Marina and her sister set up a fashion design blog yesterday. It's pretty cool—especially since they required no grown-up assistance at all, as far as I know.
Today I heard something I've never heard before: "your tumours have shrunk." Through all the many different varieties of chemotherapy and radiation and immunotherapy and experimental Phase 1 drug trials I've put myself under during the past three years, only surgery has ever knocked my cancer back. Everything else, at best, kept it at bay.
Until now. Of course this is good news—but that's all relative. The tumours I showed you back in September are still pretty big, but they are measurably smaller than they were in November. And that includes the new ones that had just appeared in the fall. So I still have cancer, a lot of it all over the inside of my chest, but just a little less of it than I did a couple of months ago. As I wrote to some friends, I'm not out of the woods, but at least I'm no longer sinking slowly into quicksand either.
Thus, this afternoon on the way out of the cancer clinic, my wife Air and I smiled a little, held hands, and bought some flowers to put in the house in celebration. Later on we had takeout sushi with the kids. And tomorrow I go back in for more chemotherapy, which I hope will continue to beat the shit out of those metastatic growths.
So I'll be a sleepy, nauseated lump of crap for the next three or four days. A bit of good news doesn't suddenly make things go easily, you see.
I had another CT scan today, to see whether my current chemotherapy is doing any good to slow or reverse or do something to the ever-expanding tumours in my chest. I'll find out the results, and what that means for my chemo regimen, next week.
In the meantime, following my most recent chemo treatment last weekend, the side effects continue. A relatively new one is that if I haven't eaten for an hour or two, the first thing I pop in my mouth causes the salivary glands on either side of the back of my tongue to ache as they kick in. I can almost feel them pumping. It's not really painful, just bizarre.
And there is the endless fun with my digestive system. Last night I was in the bathroom for nearly an hour, then, when I thought I was done and was brushing my teeth to prepare for bed, suddenly my GI tract decided things needed to clear out from the other end as well, and I puked into the sink.
Next, to top it off, the sink clogged. I stared at it in disbelief for a moment, then searched our closets for the plunger at 1:00 a.m.—and I'm sure glad it worked once I found it. Very pleasant, I must say, especially in my chemo-nauseated state.
I didn't sign up for this. But at least I'm alive to complain about it, and I have a wonderful sleepy wife and puppy to keep me warm once I do get into bed tonight. They should help me sleep very, very well.
Our daughter L turned ten today. She was born at St. Paul's Hospital, as was her older sister, and as was I.
She had a party on the weekend, but unfortunately I was so doped up on chemo and antinauseants that, as expected, I slept through the whole thing. Fortunately, my wife took some great pictures, so I have some idea what it looked like.
Happy birthday, L. I'm glad I made it to see her hit two digits.
Today is exactly three years since I found out I have cancer. I had it longer than that, at least since the spring of 2006, but that's when I knew. Three years of hell, total hell. So, another cancer post—but that won't be all I write here, just as it hasn't been since January 2007.
Chemotherapy is weird. Not the concept of it, really, which is pretty simple: poison your body with chemicals that try to poison cancer cells more than healthy cells. But being on chemotherapy is weird.
Every combination of chemo drugs is targeted a particular variety of cancer, and every person gets different side effects depending on the drugs and on our own physiology. I've been through numerous rounds of different types of chemo in the past three years. The stereotypes of nausea, weight loss, and hair falling out are true—all too true in some cases, such as when I barfed up my entire breakfast yesterday morning—but they are not universal. I've only had to shave my head once (so far), for instance.
But most chemo regimens have a variety of other, much stranger side effects too. There was that brutal acne I had a couple of summers ago, for instance. The warnings to avoid anything containing grapefruit or starfruit in other instances (though oranges, lemons, limes, and other citrus were fine). Strange black lines developing in my fingernails. Sensitivity to sunlight. Lots of bizarre and nasty intestinal side effects that sometimes had me in the bathroom for three or four hours at a time. And so on.
This time around, I have several different oddball side effects at the same time:
There may be more symptoms coming, I don't really know. But it's weird. And exhausting.
Okay, I'm back. I slept almost solidly for three days after chemotherapy, and right now I'd say I'm feeling about 60%. Maybe less. It depends on how well the Gravol is working at any particular moment.
My mom made some soup, and I think I will eat it now. End of report.
I'm back in the world of the living again. It was a pretty rough weekend, I tell you. I had chemo like this back in 2007 and 2008, but I don't think I had all three of these chemicals (oxaliplatin, leucovorin, and 5-FU) all together previously, and the infusion bottle I had from Friday to Sunday at home also dispensed more of the 5-FU in it than I'd received before, so I was getting a larger dose than I'd encountered in earlier rounds of chemo.
So, in short, it suuuuuucked. I didn't actually throw up, but I basically doped myself up with prescription anti-nauseants and Gravol so that I slept most of the weekend, and felt like death when I was awake. I was out of commission and useless to my family for three full 24-hour days at least. It was only this morning that I felt anything like normal again, so I'll rest today and may get back to some sort of functional life until I do it again in a couple of weeks.
Chemo is no fun, that's for sure. I recommend avoiding cancer just so you can not have chemotherapy, entirely aside from all the other reasons.
Today I saw my oncologist to find out about my next round of cancer treatment, but even before that, the chemo ward called me yesterday and said they'd had a wait-list cancellation. My first appointment tomorrow is, Friday, at 2 p.m.
So by tomorrow at this time, I may feel like throwing up for two or three days (or not—some new anti-nausea drugs are now available). On the other hand, I'm ready to get the hell started. This regimen is similar to some of the chemotherapy I've had before, so I have a decent idea what to expect. Unfortunately, it's not much fun.
I'll post more information as soon as I feel like it.
I found out yesterday that there are new cancer tumours in the centre of my chest—several of them, each 2 to 3 cm in size, near where my lungs meet. They showed up on the CT scan I had Monday, and they were not there on the scan in September. That means they've grown quickly, which is fucking bad news.
After meeting with my doctors at the B.C. Cancer Agency yesterday, I've stopped using cediranib, the drug that had kept my existing lung tumours growing only very slowly over the past year. I'll likely return to more conventional and aggressive chemotherapy again sometime in the next couple of weeks.
Since I found out about my cancer almost three years ago, it has never been in remission. Some people who read this blog or know me in person have, mistakenly, thought otherwise, because I've often appeared in good health.
But my cancer has never shrunk, only slowed down. It started in my large intestine, then spread to my lungs from there. The bowel tumours came out with surgery in 2007—otherwise I would probably have died later that year. But the lung metastases can't really be tackled with surgery or radiation, because there are too many, too widely spread, and too deep in my body. Chemo is the best option.
This is serious. Faster-growing metastatic tumours near my lungs, my heart, my trachea, and my esophagus are dangerous and potentially lethal. In addition to attacking them with chemo, in a few months there may be some clinical trials of MEK inhibitor drugs available to me, but that's not certain. Those experimental medications operate on the kinase cascade metabolic pathway that helps cancer cells grow. So we'll see about those too.
New, fast-growing cancer is not what anyone wants in my body, but I can't say it's unexpected, or a genuine surprise. This is how cancer often goes. Treatments work, sometimes better, sometimes worse—and then sometimes they stop working. It's always a fight, and one I might lose.
I've been a little sick this week. Not with an infection, but with what I think are side effects both from my cancer medication and from the H1N1 and seasonal flu shots I had last week. My right arm, where the H1N1 vaccine went in, is still sore like I've been punched. I've had periodic mild fevers all week, I've slept a lot, and the intestinal symptoms I usually have are more pronounced than usual.
I assume it's the combination of side effects that have made me a bit more ill, but it's hard to know. My cancer is growing very slowly in my lungs, but it's not shrinking. So I can expect that eventually it, or the effects of long-term therapies, or both together, will make me weaker and give me more pain. I don't think that's happening now. I expect and hope that as my immune system builds antibodies to the two flu strains (something that takes a week or two), I'll perk up a little.
I can't be certain. I always have some fear that a new weakness or pain I develop won't get better. The fear itself can be tiring, either at its usual low level or when it flares up. But that too is something I've become used to. Fear, like pain, like fatigue, comes and goes.
Some other things, I have discovered, do not. They stay. Love is one.
You can clearly see my portacath, which showed up just as well as my ribs. Freaky.
Here, take a look at this extremely cool and scientifically amazing picture:
That's me, via a few slices from my latest CT scan, taken at the end of September 2009. I opened the files provided to me by the B.C. Cancer Agency's Diagnostic Imaging department using the open-source program OsiriX, giving me my first chance to take a first-hand look at my cancer in almost a year. Before that, the I'd only seen my original colon tumour on the flexible sigmoidoscopy camera almost three years ago.
I've circled the biggest lung tumours metastasized from my original colon cancer (which was removed by surgery in mid-2007). You can see the one in my upper left lung and two (one right behind the other) in my lower left lung. There are six more tumours, all smaller, not easily visible in this view. I'm not a radiologist, so I couldn't readily distinguish the smallest ones from regular lung matter and other tissue. Nevertheless, now we can all see what I'm dealing with.
These blobs of cancer have all grown slightly since I started treatment with cediranib in November 2008. To my untrained eye, the view doesn't look that different from the last time I saw my scan in December of that year, which is fairly good as far as I'm concerned. Not as good as if they'd stabilized or shrunk, but better than many other possibilities.
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.
As of today, August 19, 2009, my wife Air and I have been married 14 years. As on our wedding day, the weather was Amazing Vancouver Summer last evening, our Anniversary Eve: mid-20s Celsius, sun glinting off the water. The kind of weather which impels people to spend thousands of dollars to visit. We went to C Restaurant on False Creek, where we'd last dined exactly three years ago, just before our 11th anniversary.
You know that "in sickness and in health" thing? Don't take it lightly—we've had more than our share of that seesaw over the past decade and a half. Even yesterday, it was touch-and-go whether we'd have to cancel our reservation.
You see, I was tuckered out after moving some of the kids' furniture all afternoon, and feared the onset of the dreaded chemo-induced Jurassic Gut. But with the help of some medicine, the prospect of an excellent and relaxing meal, the sheer fabulousness of looking at my wife, and a lot of willpower and positive thinking, I not only made it downtown, but was symptom-free throughout dinner and the whole trip home. (And then everything got rolling once we returned, but I won't give you details...)
The restaurant provided some little extras for us: custom chocolate script on our dessert plate, plus post-dinner ice wine on the house. We spent a leisurely two and a half hours eating wonderful, creative seafood, and we held hands to look out across the water, making occasional snarky comments about passersby on both land and sea. When we told the waiter we were celebrating 14 years, he asked, "Did get married when you were teenagers?" That's a nice compliment, since we were both 26 back then.
Air and I have been happy and sad, content and afraid together. I'm not as strong or healthy as I used to be, and I'm greyer and far more scarred and broken. But I am proud to be her man, and I'll do my damnedest to be here for as many more anniversaries as I can.
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.
That makes two consecutive CT scans showing my tumours to be stable. This drug may keep me around for awhile yet.
But man, these side effects. Just got back to bed after another hour and a half in the bathroom. There's always a price to be paid to stay alive, I guess.
Though I don’t need to talk to a lot of people, I love watching them. [...] I travel for the travel.
I suspect I may be primarily an introvert—like Dembling, I find the North American preference for extroversion a bit oppressive. That doesn't mean I prefer solitude in all circumstances, but that social interactions take energy for me, and I need time alone to recharge. I like activities with friends, and especially with my wife and children, but given time to myself, I'm unlikely to want to meet anyone for lunch or a night out. Instead, I might go out by myself, and it doesn't feel at all lonely.
I recall last year's Gnomedex conference in Seattle, an intense three-day geekfest of ideas and discussion together with hundreds of my peers in a Seattle meeting room. The hotel my wife and I chose was a good 20-minute walk away up the waterfront escarpment and through downtown. Despite the physical difficulty of making the trek with my rolling bag of computer and camera gear while suffering cancer-treatment side effects (as I still do), I enjoyed the trip each day. That's because I could be alone and enjoy people-watching as I trundled through the glass tower canyons and Pike Place Market, and either charge up on the way to the meeting, or get my energy back on the way to the hotel.
Right now is a good example too. I've had a rough couple of nights of side effects this week, and my wife is out for the afternoon, but now that I'm finally feeling good, rather than setting up a lunch meeting, or saying hi to my parents (who live next door), I'll probably just go for a solitary walk. That's just what I need.
Okay, maybe we did pay a price for our fabulous little trip. Not because of all the heavy food, but from the intensity of the activity. Aside from our outings, we also did a bit of shopping and quite a lot of swimming in the hotel pool. So, after all that, once we got home, my cancer medication side effects kicked in and I was in the bathroom till 2 a.m.
Then, this morning, we were all so wiped out we could hardly struggle out of bed. The kids were tired enough that I kept them home from school so they're in better shape for Thursday (or maybe after lunch today), and I've been resting. Alas, my wife had to make her way to a couple of medical and dental appointments, so she dragged herself out of the house.
Anyway, I think the weekend was enough of an educational experience that it's okay for the girls to miss a bit of school. The Woodland Park Zoo and the Boeing factory are a killer field trip, right?
I don't scour the Web for cancer news. Having cancer myself means the topic is enough on my mind already without reading too much more about it, and I don't seem to be the type to leap wholeheartedly into cancer advocacy as some do. Yet interesting stuff still comes my way.
It's also easier to read that stuff since my last CT scan was more encouraging than usual—even if today I'm having a worse-than-usual bout of side effects from my medication. I've been sitting on our recliner couch most of the day, and have to stay close to the bathroom all the time. (Hey, minimal carbon footprint!) So, some of my reading today:
As for me, I expect the side effects to calm down this afternoon or evening. I may go take some pictures in the yard right now. Maybe tomorrow I can get out and snap some more in the sun, and then go see one of my daughters read at her school for literacy week.
This is my third spring with cancer, and I'm glad to see it. Here's hoping for a bunch more.
I don't write as much about my cancer here as I did a couple of years ago. That doesn't mean it's gone, or going away—I still have nine malignant metastatic tumours in my lungs, but my treatment has turned into a routine, something of a drudgery. I take a small but nasty pill every day, and have side effects that keep in me in the bathroom for an hour or more every night or two. Every two months I go to the B.C. Cancer Agency and lie down in a big doughnut-shaped machine for a CT scan, and then a few days later I meet an oncologist to get the results.
And today, for maybe the first time ever, the news is relatively positive. I usually walk into the clinic expecting bad news, such as that the tumours would have grown substantially. If that had been the case, I planned to stop the current drug and take a break, then try something else in a couple of months. Yet there aren't a lot of something elses anymore, so that would have been a bummer. Still, it's what I expected, since it has been the pattern. I had asked my wife to come with me, expecting I'd need her support.
But instead, today the doctor told us that there has been no measurable change in my lung tumours. No, they haven't shrunk, but they are no bigger either.
Apparently there is one lymph node they had noticed before (though I hadn't heard about it) which has grown a bit, but overall he called it called it "no change," i.e. the cancer has been stable over the past two months. That means the cediranib pills are probably doing something, at least keeping the tumours at bay, and while the side effects aren't fun, they're manageable. Otherwise, I feel pretty good.
So, more of the same treatment for now. Pills, and side effects, but a livable life. And we'll see how things are in two months. I'm encouraged: this is the first time that the lung metastases haven't grown significantly between scans. I can plan for the summer and maybe ride my bike some, and we can do our thing here at home. That's good enough for me today, and I have some spring in my step this afternoon.
Plus, it looks like I may see the Olympics come to town after all.
My first-ever filling is done. As I expected, it was pretty straightforward. It took about 20 minutes once the freezing was in, on a beautiful sunny day with a wonderful view of downtown Vancouver from the dentist's chair. The only surprise was how sore my jaw got from keeping it open the whole time, with the dental dam in my mouth.
The local anaesthesia is starting to wear off now, but even that's not too bad. My upper lip no longer feels like a flap of rubber, for one. Unfortunately, I'm having some of those interminable intestinal side effects from my cancer medication now. That doesn't help, but it does make any residual dental pain the least of my problems.
Time to watch Destroyed in Seconds. It's a good distraction while I'm out of the bathroom. Speaking of distractions, I picked a better one to hear on my iPod during the procedure: the always incisive and funny Savage Love sex advice podcast.
I had to turn up the volume during the drilling.
I inherited my Oma's strong teeth: when she died at age 91, she still had most of her natural teeth, despite having lived through two world wars, the Berlin Blockade, and a career as a restauranteur. While I had lots of orthodontics when I was a kid, and had to have all four widsom teeth removed in 1990, I have never had even a single cavity.
Until now. When I went to see my dentist this afternoon for a routine cleaning, a bit of sensitivity and an X-ray showed a tiny amount of decay on the front surface of the last molar on the top left side of my mouth. I'll set up an appointment to have a filling next week.
Since my teeth have put up with almost 40 years of abuse so far, I can't really complain. Especially considering how minor a cavity is compared to the other shit I'm dealing with these days. A few years ago I would have been pretty disappointed by tooth decay; now it's almost laughable.
In fact, there's a good chance the only reason I have this cavity is because the chemotherapy and other cancer treatments I've had over the past couple of years are pretty hard on my immune system and the rest of my body, teeth included. My dentist said my gums are actually in surprisingly good shape, considering. My Oma-teeth are still holding in pretty strong.
Not only that, but after all the surgery and stuff I've experienced recently, and all the heavy-duty painkillers and other drugs I've had to take, a bit of dental work is about as threatening as a mosquito bite. I'll drop in for 45 minutes, have my jaw frozen, listen to my iPod, and head home. From my current perspective, it's a piece of cake.
Our friend Kim is one of the designers competing on this season's Project Runway Canada, so we've been watching the show since it started a few weeks ago. It was filmed last summer in Ottawa. At the end of this Tuesday's episode, I was shocked to see an announcement that one of the designers, Danio Frangella (who left during the first episode because of health complications) died last week of cancer. He was 34.
He was not in good shape during that first episode, because he'd been undergoing cancer treatment for seven years, and had trouble walking because of his leg ulcers. Learning that he had died gave me a chill, because of course I have cancer too, and have had it for a couple of years now. Indeed, this week it is exactly two years since I began my medical leave from work. Two years!
If you haven't had cancer or known someone with it, you tend to assume that once someone gets it, they either get treated and go into remission (or are cured), or they die pretty swiftly. Those aren't the only alternatives. Many people live with the disease for years, sometimes decades, undergoing treatments and adjusting their lives around their symptoms and side effects. Danio was one of those, and so am I.
Even successful treatments may not be what you expect. Most statistical studies look at cancer treatments as successful if their subjects are still alive after five years—you often see "five-year survival rates" in such studies. I suppose that's fine if you're a researcher, or if you're a cancer patient in your 70s or 80s.
But if you're not yet 40, like me, or like Danio, five years isn't a very long time. I have a decent chance of surviving five years past my diagnosis, but that's not enormously encouraging, not when most people my age are thinking ahead a lot more than five years. I'm already almost half-way to the five-year mark. All the medications I've taken since 2007 haven't done what they really need to do, which is stop or reverse the nine small metastatic tumours still growing (slowly) in my lungs. On the other hand, I've also already lived longer than a lot of people diagnosed with my sort of aggressive colon cancer do.
One of the first things my gastroenterologist Dr. Enns told me back in '07 is that while there are tons of statistics out there on cancer survival rates, no one person is such a number, and the statistics can't predict how one person's disease will progress, or how long they will live. Just yesterday my oncologist Dr. Kim noted that research shows physicians to be notoriously poor at predicting life expectancy for cancer patients—no better than patients do ourselves, and in many cases no better than a wild guess.
As I wrote recently, I have "months certainly, years quite possibly" to live. How many years, I don't know. Nobody knows. Will I see my kids graduate from high school, or reach my 20th wedding anniversary with my wife in 2015? It's possible, but unless a new treatment starts working, or I go into remission because of lifestyle changes or another reason in that time, it may not be likely.
Then again, some people die young in car crashes or for other reasons, never anticipating their last day, or their last minute. If I'd been born 100 years ago, I would probably have died in my early 20s from diabetes, and might never have married or had children, or even seen a website, let alone built one like this. And if I lived in Swaziland (where 38% of adults have AIDS) or Afghanistan (with astronomical rates of infant mortality), even today, I'd be at the end of the average male life expectancy already.
Here, I am lucky to have a wonderful family, and support, and great health care, and I can still choose to live, to enjoy it, to write what you read, and to make my life as long and happy as I can.
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.
The main side effect of my current cancer drug, cediranib, is intestinal. I have to go to the bathroom a lot. Sometimes a whole lot. The last two nights, it's been at least once an hour, sometimes more, all night long. On the night of December 30, I didn't sleep at all between midnight and 4 a.m. because of it.
Last night, New Year's Eve, was even worse. I slept a little, intermittently, through the night, but I woke up frequently and rushed to the toilet, well over a dozen times. Between 7 and 8 a.m. alone, that happened six times. Afterwards, things settled down somewhat and I was able to sleep.
And sleep, and sleep. I woke up around noon to eat something, then again at 5 p.m., but otherwise I have been in bed all day. My butt is sore from the night. Now I'm watching SpongeBob SquarePants. So far this is the worst day of side effects since I started this treatment in November. Most days haven't been anything like this, so I hope tonight and tomorrow are much better.
I still prefer this to the nausea, pain, and morphine dependency I've suffered before—I think. Maybe this means the drug is doing something. I hope so. And I hope January 2 is an improvement.
It's been a busy Christmas, made busier by enough snow to nearly paralyze a usually not-very-snowy city like Vancouver. Yet my wife, daughters, and I were able to pilot our snow-tire-equipped Toyota Echo through the wilds of East Vancouver to my aunt and uncle's house for our traditional family Christmas Eve event. We did have to bunk out there overnight, though.
Today, Christmas Day, we made it home, cleaned up, changed, unpacked, and then ventured out to Maple Ridge for a quiet dinner with my wife's parents. The roads by then were better. Besides eating, I performed some of the usual in-laws' tech support to help my father-in-law configure their new Internet Wi-Fi radio set, and my mother-in-law create her first blog. (No content yet, so a link must wait.) With more snow forecast, we made an early night of it and returned to Burnaby again, and Christmas was complete.
Now, as the day ends, I think back not only on Christmas and my happiness at being relatively healthy again this year (tumours in my lungs are still growing, but very slowly, and maybe my new holistic health approach is assisting the cediranib in keeping them somewhat at bay), but also about the deaths of two people. They were my friend Martin Sikes, who died suddenly a year ago on the morning of Christmas Eve, after sending me what turned out to be a spooky email; and James Brown, who appropriately, somehow chose the most bombastic of days, December 25, to make his last fleet-footed shuffle off the stage.
From now on, to me, December 24 will also be Martin Day, and December 25 is JB Day. In their honour, I'm drinking my first glass of The Balvenie 15-year-old scotch whisky tonight, from a bottle given to me on my birthday in 2007 by Alistair—but which I have only now opened.
I hear the plow truck finally making a pass through our street outside, near midnight. I am exhausted, and content. Slàinte to MS and JB, and Merry Christmas to you.
For the first time since before our kids were born more than a decade ago, we bought a real Christmas tree for our living room. The Douglas fir was a little messy to put up, but we have a good vacuum, and now the house smells great. It's also good sign than it's sucking up water like crazy, so it likely won't dry out in the next week and a half:
Unfortunately, while I I did haul it into the house and help get it put up, I didn't help decorate. That's because my current cancer medication, cediranib, has one major side effect: diarrhea, or something close to it. I don't get it every day, but when it happens, it comes on suddenly and lasts for several hours. And last night was one of those times.
My wife and daughters didn't need my help, though. They did a great job decorating, as usual.
You will recall my crazy long eyelashes, which have grown to ridiculous length since one of my previous chemo treatments stopped in the spring. They seem to keep growing even when they shouldn't, so tonight my lovely wife took some scissors to them so my lashes stop batting against my glasses and smearing them up:
My lashes still look somewhat mutant, because of their unnatural lushness and now cropped ends—they now look a bit like brushes—but it's an improvement. For good measure, she trimmed my eyebrows too, since they were going a bit nutty as well. It feels much better.
Last week my wife and I attended a two day "life enhancing seminar" at Inspire Health, an unusual cancer-treatment facility in the Fairview area of Vancouver. It is indeed an inspiring place, and an unusual one.
Inspire Health (formerly the Centre for Integrated Healing, and now ten years old) advertises itself as "integrated cancer care," and what that means is that they take a whole-person approach to battling and living with the disease. There are several medical doctors there, whose consultations—the first one is 90 minutes long!—are covered by the regular B.C. Medical Services Plan (and so don't cost me any money). But there are also many complementary treatments such as acupuncture and massage available (for a fee, as elsewhere in the province), in addition to a whole bunch of supportive resources in the form of free yoga and meditation classes, a resource library, and so on.
The seminar itself costs some money, and is a sort of boot-camp introduction to the centre's philosophy, with numerous speakers over two long days. It's difficult to summarize, but the nub of it is to help patients like me take control of our health and treatment. That's a change for me. It's not that I've been timid about my cancer care over the past two years—but I have been pretty passive until recently. I simply lined up and took whatever my doctors could throw at me to try to destroy the tumours in my body, and suffered whatever pain and side effects that entailed. Here's what I wrote in March:
...The basic choice has been: Treatment or death? Yes or no? That's a pretty easy decision. My real choices have been pretty small...
The choice is no longer so stark, because the conventional treatments I'm taking now (like Cediranib) are more investigational, and I have to weigh their benefits and disadvantages more explicitly. Inspire Health is designed to help me make the more complicated decisions that come now, and to get me eating better, exercising more, relaxing effectively, and overall feeling better—all of which may assist in reducing the effect of cancer on my health, and will certainly help minimize the side effects from the treatments I decide to pursue.
Based on medical advice well supported by good research, I'm already taking some useful (and extremely non-bizarre) vitamins and supplements, and we've started eating more organic and whole foods, as well as improving our family's nutrition generally, which can only be for the good. I'm getting out for a brisk walk pretty much every day, even in the nasty weather, and instead of buying a coffee I'm often getting one of those bizarre-looking but surprisingly good-tasting carrot-spinach-beet–type fresh juices at the mall. A couple of days ago I attended my first-ever yoga class at Inspire Health, and though it was a beginner's session and very slow and gentle, it was also surprisingly strenuous. I'll be going back next week.
What's perhaps most unusual about Inspire Health is the nature of the space itself. While it is in many ways a medical office, it looks, feels, sounds, and smells nothing like one. It's decorated in subtle earth tones, with plenty of art. The hallways curve subtly. The lighting is gentle and incandescent. The furniture is soft and comfortable. It smells like warm spices and tea. It's relaxing, not stressful. As you might expect from my description, there's a certain new-agey granola vibe, which as a hard-brained science-dude rationalist I have to work to avoid being a bit cynical about.
But it works. I recommend that any cancer patient in the Vancouver area try it out—we're lucky to have it, because it's one of the only facilities of its kind in North America. Go there, for a doctor's appointment or a seminar or a yoga class, and you feel better just walking in, which is a big contrast to any other medical facility I've ever visited. And there are a lot of smart people associated with the place. Will all this stuff slow or stop my cancer? I don't know. But I'm already feeling better, no matter what else happens.
Back at the beginning of this year, the chemotherapy treatments I received made my hair thin and grey. My eyelashes similarly thinned out almost to unrecognizability. But I'm on a different chemo regimen now that doesn't make me shed hair, so check them out now...
I had shaved my head in March because of the annoyance. It has grown back very slowly, but now it's back and dark again. I didn't trim my lashes: they just fell out. What's weird is they have come back at a bizarre fluffy mutant length, like I'm wearing a ton of mascara.
Raul asked, "Do they feel different? e.g. do you have any particular sensitivity around the hair follicles?" Not there, but when I blink, they now brush against the lenses of my glasses, which is a strange feeling. And I can see them—another change.
Although they have been pretty long most of my life, my eyelashes have never looked anything like this before. But I've gotten used to them, and most of the time I don't notice the difference unless I look in the mirror. Check out my Brezhnev eyebrows too. Those are going to need a trim.
This week I'm spending all day every day at the B.C. Cancer Agency having my blood tested, blood pressure taken, and ECGs done as part of the Phase I clinical trial I'm participating in—hence my lack of blog posts.
It's not much fun, but I do have plenty of free time in between tests. I spent most of today sleeping after a mostly sleepless night of intestinal side effects (now much better). But yesterday I was more awake, and spent some of my time taking an old guitar riff I'd recorded more than two years ago and building an actual instrumental tune out of it. The result is:
There's something of an '80s U2/Police/New Wave feel to the track. I'm not sure where that vibe came from, but it's still pretty obviously one of my kerrang-kerrang geetar instrumentals, as usual. I hope you like it.
A few weeks ago I was contemplating skipping my next clinical trial of cancer treatments, but after talking to my doctors it seems that the drug under examination, cediranib, has a better potential for being effective, and is less likely to cause nasty side effects, than I thought. So today I took my first dose, in the form of a tiny pill no bigger than a small vitamin tablet. I only down one a day, quite a contrast to the several hours of IV dosing from my previous chemo treatments.
It almost seems like too little to do anything, but I've learned over the past couple of years that little things can have big effects in cancer treatment. So here's hoping. It will be a couple of months until my next CT scan indicates any activity (slowing, stopping, or shrinking my lung tumours) from the drug, but I'll also be having numerous blood tests and other evaluations, mostly in the next couple of weeks, as part of the scientific study. So I'll feel like something is happening.
I've felt no side effects at all so far—I wouldn't necessarily expect to, on the first day—so today I dealt with another problem. Or at least I hope I did. After this weekend we discovered that our roof appears to be leaking into our upstairs bathroom, bubbling up the paint all down one of the corners of the room. Last night I ventured up into our narrow attic crawlspace with one of our small digital cameras, where I confirmed the leak through from the roof. We last had the roof re-done in 1994, so it's no surprise it might be aging.
Luckily, today was a rare sunny autumn day in Vancouver. So this afternoon I schlepped down to Home Depot for a can of patching tar, then my daughters and I climbed up on the roof of the house after school (they'd never been up there before). The tar-paper roof tiles actually look to be in good shape, but the seams are indeed dried and cracking. The girls watched while I troweled the noxious black goop onto and around the most likely leak zone. The rain is supposed to return tonight, so we'll find out soon enough whether I did a good job.
We're going to have to repaint the bathroom no matter what. And next time there's a spell of good weather, it might be wise to re-tar all the seams on the roof, just in case.
I think some of you might have garnered the wrong impression from my previous entry. I'm not giving up on conventional cancer treatment, nor am I resigned to dying soon. Rather, I'm considering my choices more carefully, trying some new things, and making a stronger cost-benefit analysis of the options presented to me.
Until September, the conventional treatments I'd been taking—chemotherapy, radiation, surgery—still showed reasonable promise of putting my cancer into remission, or shrinking it, or even (before we knew it had metastasized into my lungs) curing it. So it was worth trying everything, side effects and life-on-hold be damned. The surgery worked its magic: if the cancer cells hadn't found their way to my lungs first, I might very well be cancer-free by now from the skilled work of Dr. Phang and his team at St. Paul's Hospital. The radiation I'd had before that might even have helped.
But the chemo...well, those various poisons I've taken in 2007 and 2008 may very well have kept any further cancer from appearing in my intestines, but the tumours in my lungs are tough little fuckers, and have resisted being beaten down. Now I have to look at the new treatments I might have coming up, and decide whether their relatively low likelihood of zapping those same malfunctioning blobs of tissue are worth what I might have to suffer in taking them.
I mean, it's fine and noble to help cancer research, but I've already done that a couple of times. I might still do it this time, but even if I do, I'm prepared to bail out early if the side effects are too harsh or if it doesn't seem to be helping. I'm also meeting with a doctor at Inspire Health next Friday to talk about other stuff: nutrition, exercise, relaxation, complementary treatments, and so on.
This is a new phase of how I understand my disease, and how my family and I live with it, one I feel good about because I'm putting a priority on the living part.
My wife Air is wiser than me—more self-aware, better at thinking long term. A big reason I'm not that way is because, until I developed cancer at the beginning of last year, I'd never had to face big, difficult decisions. I had a happy, stable childhood, did well in school, lucked into good jobs, and found her. (More accurately, she found me. See what I mean?)
Even after my cancer diagnosis, I've followed the path I've usually chosen in life. That is, I've coasted, and let gravity take me where it will. My treatment decisions have been easy ones. Follow doctors' orders. Get tests, have surgery, take chemotherapy and radiation, more tests, more surgery, more chemo, more chemicals, more treatments, coming up on two years' worth now.
The surgeries in my intestines were successful, but small nodules of cancer spread to my lungs anyway, and the chemical medicines for those haven't worked so well. The metastases continue to grow slowly, regardless of what my doctors have thrown at them.
My latest surgery a couple of weeks ago was my first that wasn't about attacking the cancer. It was simply to make my life better, to reconnect my intestines so that I'm no longer walking around with an ileostomy bag of poop glued to my belly. Now I have another new, healing scar, and I'm re-learning how to use the bathroom the way I used to.
That surgery prompted my wife to have a talk with me a couple of days ago. With her wisdom, and her insight, she's seen what I've been doing in my mind for the past couple of years. I've been treating my cancer as something to fight with everything the doctors and nurses can offer, no matter how sick they make me, hoping that one of those weapons will kill it so I can move on with my life. I've put my life on hold—and my family's life too, hers and our daughters'—to fight the disease, treating it as a phase to get through before I return to something normal.
Except that's not how it's going. The next treatment the B.C. Cancer Agency is offering me is a Phase I clinical trial of chemotherapy agents. That means it's a very early human test of the drugs involved, not even designed to find out whether the drugs work to fight cancer, but rather how patients like me respond to them—what levels they appear at in my bloodstream, how they interact, what side effects they produce. In other words, we've run out of the conventional therapies, and we're moving on to experimental ones that have a very small chance of working. They are, however, likely to produce side effects, even if they aren't effective in shrinking my cancer.
Air made me ask myself—after almost two years on hold, most of which I've spent hammered down by those side effects, or recovering from surgery—how I want to live my life with cancer. Because that's what it looks like I'll have to do. We don't know how long that will be: months certainly, years quite possibly. All indications are that, like my diabetes, I'll have cancer for the rest of my life. It will probably be what kills me, whenever that is.
Yet since I stopped my last chemo treatments in September, I've felt good, verging on healthy, better than I have in ages. Therefore, much of what I've suffered through, especially recently, has been from the treatments, not from the disease. I thought that suffering was a necessary part of the fight. So I thought. But now it's time to make some real decisions.
Do I want to be part of this new Phase I trial, to contribute semi-altruistically to cancer research, spending many days at the Cancer Agency getting tests, taking pills every day, maybe feeling sick all the time and getting more strange skin rashes, perhaps even developing other weird side effects like elevated blood pressure, maybe for no reason that might actually get me better?
Or do I want to look at something else, like Vancouver's Inspire Health Integrated Cancer Care, and the Callanish Retreats, to try different things and look at managing cancer instead of fighting it? Strange as it sounds, should I make cancer part of how I live my life, rather than something that stops me from living it?
When I heard about the trial yesterday, I assumed, almost unconsciously, that I'd proceed with it. But that's still coasting, just taking whatever the doctors serve up from a diminishing buffet. There are places I still want to go in my life, things I want to do, the husband and father I still want to be. Perhaps now is the time to go there, to do them, to be that, because I can't wait forever first.
I shouldn't waste my life trying win a fight that likely can't be won. I should take it off hold, and live it.