Penmachine

From my Twitter stream:

• My dad had cataract surgery, and now that eye has perfect vision—he no longer needs a corrective lens for it for distance (which, as an amateur astronomer, he likes a lot).
• Darren's Happy Jellyfish (bigger version) is my new desktop picture.
• Ten minutes of mesmerizing super-slo-mo footage of bullets slamming into various substances, with groovy bongo-laden soundtrack.
• SOLD! Sorry if you missed out. I have a couple of 4th-generation iPod nanos for sale, if you're interested.
• Great backgrounder on the 2009 H1N1 flu virus—if you're at all confused about it, give this a read.
• The new Nikon D3s professional digital SLR camera has a high-gain maximum light sensitivity of ISO—102,400. By contrast, when I started taking photos seriously in the 1980s, ISO—1000 film was considered high-speed. The D3s can get the same exposure with 100 times less light, while producing perfectly acceptable, if grainy, results.
• Nice summary of how content-industry paranoia about technology has been wrong for 100 years.
• The Obama Nobel Prize makes perfect sense now.
• I like these funky fabric camera straps (via Ken Rockwell).
• I briefly appear on CBC's "Spark" radio show again this week.
• Here's a gorilla being examined in the same type of CT scan machine I use every couple of months. More amazing, though, is the mummified baby woolly mammoth. Wow.
• As I discovered a few months ago, in Canada you can use iTunes gift cards to buy music, but not iPhone apps. Apple originally claimed that was comply with Canadian regulations, but it seems that's not so—it's just a weird and inexplicable Apple policy. (Gift cards work fine for app purchases in the U.S.A.)
• We've released the 75th episode of Inside Home Recording.
• These signs from The Simpsons are indeed clever, #1 in particular.
• Since I so rarely post cute animal videos, you'd better believe that this one is a doozy (via Douglas Coupland, who I wouldn't expect to post it either).
• If you're a link spammer, Danny Sullivan is quite right to say that you have no manners or morals, and you suck.
• "Lock the Taskbar" reminds me of Joe Cocker, translated.
• A nice long interview with Scott Buckwald, propmaster for Mad Men.

Labels: animals, apple, biology, cartoon, geekery, humour, insidehomerecording, iphone, ipod, itunes, linksofinterest, nikon, photography, politics, science, surgery, television, video, web

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

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

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

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

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

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

Labels: cancer, pain, surgery

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

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

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

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

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

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

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

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

On hold

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

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

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

Experiment, not treatment

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

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

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

Real decisions

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

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

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

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

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

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

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

Okay, I have to lie down now.

Labels: cancer, hospital, ileostomy, pain, surgery

It's been many years since I attended a university convocation ceremony, but I went to one today. My cousin Tarya graduated with a Bachelor's degree from Simon Fraser University, which I can see atop Burnaby Mountain from our front window.

I was glad to be able to make it, before my surgery tomorrow. (I've been on a liquid diet all day, so I had to miss out on the family lunch afterwards.) It's been almost 20 years since I graduated from UBC, and Tarya's the first in our family to get a university degree since then—and since I'm an only child, my cousins are as close to siblings as I have. She and her longtime boyfriend T.J. also just announced their engagement too, so it's an exciting month for her.

Exciting for many of us, in fact. My next excitement is that I'll be in hospital for most of the next week, so don't expect much in the way of updates here.

Labels: family, school, surgery

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

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

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

Labels: cancer, hospital, ileostomy, pain, surgery

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Labels: cancer, chemotherapy, pain, surgery

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

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

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

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

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

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

Labels: cancer, chemotherapy, hospital, surgery

To misquote a recent Head & Shoulders shampoo ad, dudes don't usually talk about their hips, but today I will.

I haven't been very physically active since I got my cancer diagnosis nearly a year and a half ago. Before that, I regularly bicycled to work, about 12 km each way, and when I took rapid transit I'd often walk an extra stop or two past the closest one to get some exercise. Now that I'm back up to fighting weight (having regained the 25 kg—55+ pounds—I lost before and after my surgery last year), I'm making some efforts again in that direction.

But holy cow, am I inflexible. I've never been a yogi master, nor have I ever in my life been able to touch my toes. Still, yesterday when I took my bicycle out (the first time in months) for some errands and a ride through Burnaby's Central Park, I nearly fell over in our driveway, because my minimally-mobile hips almost prevented me from lifting my leg high enough to get on the damn bike.

Things improved some once I got rolling, and some of my stiffness was probably due to my Italian-sandal–induced wipeout a couple of days ago, but I also noticed that I really had to gear down the mountain bike while pedaling up even the slightest hill, and my speed on the flats was far from what it used to be.

I felt great when I got home, despite a bit of soreness, so I plan to ride some more in the next little while, particularly since I'm having a break from chemotherapy for the next few weeks. Some stretching would also probably be in order.

Labels: bicycle, chemotherapy, exercise, park, surgery, vancouver

It's difficult for me to understand what it's like for my family and friends as I go through cancer treatment. As I've written before, in some ways it's easier for me than for them, because at any time I know how I feel, and at least tell myself that I have a decent sense of how I'm doing. That's not always clear to those close to me, and I know they worry.

I think I have a better understanding of it this week, because my wife had elective surgery a few days ago. She was in hospital overnight (which the doctors had expected and planned for, but which we didn't know about in advance), and has been recovering here at home. Since I'm not on chemotherapy this week, I'm in reasonably good shape and have been able to keep the house running fairly well.

But I wish there was more I could do to alleviate her pain and other discomfort. I also have little sense, from hour to hour, how she's feeling. I feel a bit useless. And this is relatively short term—she's been taking care of me, and doing a great job of it, as I've been through surgeries, chemo, radiation, drastic weight loss, and much more for well over a year.

This is that "in sickness and in health" part they talk about when you get married. I'm glad we can be there for each other.

Labels: family, hospital, pain, surgery

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

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

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

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

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

Compared to everything else that has happened recently, that surgery was a walk in the park. I'm home now, and going to have a nap. Or watch some more MythBusters.

Labels: cancer, family, friends, hospital, mythbusters, pain, surgery

Back in July when I had my big cancer surgery, Dr. Gourlay at St. Paul's inserted a small plastic stent into my left ureter, which needs to be removed. I've been waiting to hear from his office about when that might happen.

This morning they called to remind me that it's happening tomorrow. Except I never heard about it in the first place—the "reminder" was my first notice. That's fine. They will be sedating me, so I need to be at the hospital at 7:30 a.m., and the procedure is pretty short, so I should be back by lunch. (Much shorter than my last stay in hospital, I'm glad to say.)

My wife and parents and kids have been tremendously understanding as we shuffle the logistics around to make this work on short notice. I'm tremendously lucky to have them all here supporting me. Plans change fast around here sometimes.

Labels: cancer, family, friends, hospital, 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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Last night my wife and I went out for dinner for the first time in about a month, since before my major colon surgery on July 6. It was both a success and a failure. Or, more accurately, it was a good test.

We hired a babysitter for a few hours and chose our nearby Cactus Club Cafe, where I had some delicious cheese toast, grilled salmon, and mashed potatoes. (I had to skip the rice pilaf because during my recovery I need to avoid high-fibre foods like brown rice and nuts of all sorts, which can create blockages.)

I also drank a pomegranate cosmopolitan martini and a mojito. Everything was delicious, and I had a great time, even though I still have to bring a pillow to sit on.

However, earlier in the day my surgeon, Dr. Phang, had prescribed me some Tylenol 3 pills with codeine to help alleviate some of the pain I'm still having. As I half-expected, just as we were paying for the meal, the combination of the two drinks and the T3s kicked in, and I felt extremely light-headed sitting at the table.

My fantastic wife knew what to do, of course. She told me to put my head down to my knees, which I did, and I immediately felt better. Then she went to the car and retrieved the wheelchair we borrowed from my parents yesterday, and wheeled me out of the restaurant. I lay down in the back seat of our car and we drove the three minutes home, skipping our planned trip to the mall. Instead I went to bed and watched TV. Later we watched The Bourne Identity and I made some plans to give a remote video talk to the upcoming Gnomedex conference next week.

I didn't find what happened at the restaurant at all embarrassing, by the way. I'm way past embarrassment at any of this stuff. It was an experiment, in a way—what are my limits right now? I know I can eat a good meal in relative comfort. I know the Tylenol 3 works. And I know it does not interact well with booze (though I was pleased not to feel nauseated). So I should lay off the drink for now, at least if I plan to stay upright.

It was a damn good martini, by the way.

Labels: cancer, food, pain, restaurant, surgery, wheelchair

Last week, when I had a nasogastric tube on my face to drain my stomach, the clip that held the plastic hose accidentally injured my nose. I was still on morphine at the time, so while it felt like I'd been punched in the face, I didn't really care.

A couple of days later, when we removed the bandage, the nurse who'd put it on was a bit horrified (and quite apologetic) at what had happened. Today the last of the scab fell off, and now I have a couple of nice craters in my nose:

So now I look like I've been punched in the face too. Battle scars!

Labels: cancer, morphine, pain, surgery

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

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

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

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

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

It's a day earlier than I expected, but I'm finally home from St. Paul's Hospital once more, after spending almost all of July there. I am tired and incredibly weak, but I plan to improve now, and not go back to the hospital again for a long time.

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

It's been well over a week since my last post, where I was complaining about morphine withdrawal. Well, it turned out to be rather more than that—yes, there were those shakes and chills and sweats, but it turned out that I also had a partial bowel blockage.

So I checked myself back into St. Paul's Hospital on Wednesday, July 18, and have been here ever since. It looks like things are finally stabilizing: I no longer have a tube up my nose, I'm starting to manage my own blood glucose again, and the medical crew needs to get my potassium levels under control, but the key thing is fatigue. I'm very weak, since I only started solid food again two days ago, and I'm now down to 148 pounds, another 12 pounds less than my last record low, and a full 52 pounds less than my normal weight.

Anyway, while the computer lab here at the hospital is fun, this is the first time I've felt up to coming here. If you want to get regular updates on how I'm doing, check my dad's blog at penmachinedad.blogspot.com if you haven't already. He has something new every day.

My family (especially my wife and parents) and friends have been unbelievably great, as have the hospital staff. My friend Simon is also in the same hospital, five floors down, following heart surgery, so we're continuing to be PKBF (painkiller buddies forever), although now the painkillers consist mostly of Tylenol and coffee. He's using the computer next to this one right now.

I may go home as soon as Monday, but we'll see. In any case, I'll be back soon enough. Thanks for continuing to check in.

Labels: cancer, family, friends, hospital, ileostomy, morphine, pain, surgery

I'm now fully ensconced here at home on our fantastic recliner couches, with food and drink and excellent "nurse" and "secretary" service from my daughters (who were alternating those jobs in 15-minute shifts until it turned into a fight). Plus the real work in sweet care from my wife too, of course.

I finally weighed myself this morning. As I noted some weeks ago, I had lost about 25 pounds (11 kg) between Christmas and my recent surgery, which was drastic enough. As of today, with a week of not eating at all or hardly eating in the hospital, I have dropped another 15 pounds—or 40 pounds (18 kg) total.

So I've hit a new adult weight low of 160 pounds (73 kg), fully 20% lighter than I was seven months ago.

Time to start getting it back. More Cheesies, please!

Labels: cancer, family, ileostomy, surgery

I'm on my living room recliner couch now, after a week in the hospital (as you saw) that included:

• Wonderfully adept surgery from Dr. Phang and Dr. Gourlay, who saved both my anal sphincter and my left kidney, which I thought I might lose.
• Excellent, friendly, and caring treatment from all the nurses, doctors, and other staff of St. Paul's Hospital in Vancouver who took care of me after that.
• Very fast recovery to start, so that everyone thought I might come home Wednesday, after only five days, rather than the seven to ten days originally expected.
• A big setback when my intravenous drip was disconnected, when I went into full-blown morphine withdrawal that had me shivering and twitching and groaning in pain through a whole night and morning.
• Getting a handle on that problem and beginning a plan that will bring me off the morphine as I recover at home.
• Having a visit from my great friend Simon, and then visiting him again as he recuperated in the same hospital from his own planned major heart-valve operation.

We could not share a room, since Simon's on the cardiac ward, but we remain PKBF (pain-killer buddies forever). Simon is still there for a few more days. Across the ocean my online cohort Jean-Hugues is also recuperating in a hospital in France after colon cancer surgery three days ago, so send them both your good vibes.

Thanks to my dad for posting updates, and to my wife for getting a few photos and the video up here (as well as for being generally wonderful, of course). Thanks to my kids for visiting and bringing stuff to help me feel better. I think my crazy wacky web guy activity will remain slow for the next while, but I'm back, baby.

Labels: cancer, colostomy, ego, family, france, friends, ileostomy, surgery

Labels: cancer, colostomy, hospital, ileostomy, moleskine, surgery, vancouver

Labels: cancer, colostomy, hospital, ileostomy, surgery, vancouver, video

Tomorrow by this time I'll be at St. Paul's Hospital recovering from my major cancer surgery. My rectum and a chunk of my lower colon will be gone. Depending on how things go, it's also possible that my left kidney will be removed as well, if the surgeons can't reconnect the ureter after removing my tumour. I will either have a temporary ileostomy to let the doctors later hook up my plumbing again, or if that's not feasible, a permanent colostomy. No one knows yet.

Yeah, okay, that freaks me out. But I'm ready, I think.

It's been a strange couple of days. Yesterday my wife and I met with the urologist and the pre-surgical team and went through all the details. By the end of it I was aching and tired, and slept and slept and slept. Today I'm on an all-liquid diet to prepare (Jello is as solid as it gets), and even though I haven't taken my sodium phosphate solution yet, my intestines are purging out in anticipation anyway.

I'll be in the hospital at least ten days. I won't be blogging or Facebooking or reading email. My wife may post some stuff here, and my dad has started a blog that will include updates. See you in mid-July sometime.

Labels: cancer, facebook, family, surgery

The big picture has not changed since yesterday, but we're moving on. Raging torrents of information continue to flood in from the medical staff. I had an ultrasound probe and met with my surgeon Dr. Phang today. My operation is currently tentatively scheduled for July 13.

It is possible that, in the long run (whatever that means under my current circumstances), I may yet regain some use of my anal sphincter, rather than needing a permanent colostomy bag, but I'll have a temporary one no matter what. It is also possible that one of my kidneys might need to be removed, or maybe my ureter (which has cancer stuck to it) will just be shortened. Those things are the new ideas to me today, although neither is either guaranteed or impossible. So maybe, maybe not. I see a urologist next Tuesday about the kidney thing.

There's a lot of that right now. Maybe, maybe not.

Maybe the guy who just started his lawnmower outside at 8:15 bloody p.m. on a Wednesday night will come to his senses and shut it off. Or maybe not.

Maybe the surgery and future chemotherapy and other treatments will put the cancer cells at bay and I will live another few decades. Or maybe not.

There's a strange clarity in not knowing for sure. We all live that way, I guess, I'm just more directly aware of it than most of you. In many people's lives—and mine too—there are risks. Risks of car crashes and flesh-eating bacteria and falls in the bathtub and deployments to Afghanistan and mountain-climbing accidents and earthquakes and tsunamis and accidental electrocution and choking on chicken bones. And aggressive cancer.

These bodies of ours are fragile things, and amazing things. Here's to keeping my jalopy running for awhile yet.

Labels: cancer, colostomy, probability, 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

Back in February, before I had my first, small cancer surgery, as the date approached I started getting a weird set of mixed messages from surgeons, doctors, medical offices, and so on—like they weren't communicating with each other properly, or weren't noticing that they were sending me conflicting information and requests about dates and appointments.

As my planned July 26 major surgery date approaches, it's started happening again. Three days ago I called my surgeon's office quite specifically to see if my wife's planned trip out of town in mid-July could possibly cause a conflict, i.e. would my July 26 date be moved earlier for any reason? They said no. Then this morning they called to say that the date might move forward (I had to remind them about my call on that topic on Friday!), and could I meet with another surgeon on Wednesday? Then this afternoon, a different person from the same office called to say that my original surgeon wanted me to meet with a urologist—on one of the dates the first person had said could be my surgery date.

Once again, WTF? Now I have no idea what the hell is going on. I meet with Dr. Kennecke my oncologist tomorrow, and Dr. Phang, one of the surgeons, on Wednesday. I hope we can sort something out. Fighting cancer has a significant mental component, and right now the confusion and uncertainty are not helping matters. I want to make sure my medical team understands that.

Labels: cancer, ego, family, surgery, travel

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, radiation, surgery, vancouver

This morning, after dropping the kids off at school, I did what I've been dreading all week. I cleared out my bowels in preparation for a rectal ultrasound exam at 11:15 at St. Paul's Hospital. That meant that I gave myself a chemical enema from the drugstore that, well, flushed out my system.

I've done it before a couple of times, and that wasn't too bad. But this time was while I'm still having radiation side effects. Everything's very sensitive and inflamed in there. It was excruciating. I was in the bathroom for an hour, either on the toilet or in the bathtub or on the floor—at least when I wasn't marching around our house trying to promote some additional movement in my intestines, and snapping at my wife not to talk to me because I was in so much pain. Awful.

And then we got down to the Ultrasound clinic (the half hour car ride sure was fun) and discovered I had written down the date wrong. I was supposed to be there two days ago—I'd mistranscribed it as the 15th instead of the 13th. We had to reschedule to June 27, when I get to do it all again!

Nothing like torturing yourself for no reason at all, I always say.

Labels: cancer, ego, radiation, surgery

I'll let you in on a secret: sometimes I fake it here. For example, this post from Tuesday, June 5, a couple of days ago, really went up yesterday, and I backdated it just to keep the date flow going on the website. On Tuesday I was way too sick to blog, or do anything else. I was in the bathroom every half hour for 12 hours, starting at 4 a.m., and things didn't really calm down until late at night. In between I did nothing but sleep. Even yesterday I was pretty wiped out.

The Cancer Agency folks did warn me that the radiation effects (PDF) could even get worse for a couple of weeks after the end of treatment. I don't think I quite believed them, but there you go.

What it does tell you is that this blog does reflect what's going on in my life, but not entirely. Sometimes I lie, and things here look better than they are. But today was a good day, honest!

Labels: cancer, chemotherapy, geekery, radiation, surgery

Last year when Gillian and her Team Thunderpants entered the Underwear Affair, a charity run for "cancers below the waist," I thought it was a cool idea and an interesting opportunity for people of all sorts to parade around in their skivvies. But it wasn't anything I gave much thought to, nor did I donate.

This year, of course, I have one hell of a cancer below the west. So Gillian's run this year is a lot more personal.

Since I found out I had cancer at the beginning of this year, many people have asked me if there's anything they could do. Here's something: donate this year to help raise money that might find a cure, or develop better treatments, or reduce how fucking much it hurts sometimes to have this disease.

And, just in case Gillian's boss does more Google searching (for, say, an editor in Vancouver), I'll avoid posting photos of her in her underwear as Darren did.

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

My MacBook is officially one year old this week. Despite our somewhat checkered history over the past 12 months, it is now behaving as it should and is doing a great job with all the stuff I throw at it.

Which is, I guess, more than I can say for my own body these days. I'll be taking myself into the shop in a couple of months too, so both the MacBook and I will have seen major repairs in 2007.

I hope my own goes just as well.

Labels: apple, cancer, geekery, macbook, repairs, surgery

People hear that I have cancer and I've had chemo and radiation and am going to have surgery. They read this blog, where I talk about it all, which is something a lot of other cancer patients wouldn't do. They say, "You're so brave."

That's bullshit. I'm not brave. I have a disease, and with my doctors and my family, I'm fighting it. I hope to rid my body of it. I blog about it because I compulsively blog about everything. But the treatment is painful and exhausting, it is stressful, it makes me afraid. At the worst of it, I have retreated into a cranky, withdrawn, barely-there husk of myself, essentially forgetting everything from Mother's Day to the laundry piling up. The way I approach each day comes not from bravery, but from necessity, and sometimes desperation.

The real brave ones—the people in my life who have gone above and beyond the call of duty—are my family, including my daughters, and especially my wife. While I can occasionally manage to take the kids to school or help put them to bed, and maybe empty the dishwasher now and then, she has had to take over pretty much everything in our household.

She's shuttled me to the Cancer Agency almost every day. She puts up with me when I'm lying in bed moaning, or trapped in the bathroom for an hour, or when I can't even muster the motivation to give her a hug, or when I use up all the hot water trying to soothe my abdomen. She keeps the girls fed and clothed and clean and happy. She takes time for herself and talks to her friends and continues with her podcast.

You want brave? She's brave, and I love her.

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

My pre-surgery schedule is coalescing quickly. Next Friday, June 1, I meet with medical internists at St. Paul's Hospital to go over the medications I'm taking and see what adjustments I might need to make. June 15 I have a rectal ultrasound, and June 19 another CT Scan. June 26 I meet with Dr. Kennecke, my medical oncologist, to review pre-surgery plans. There will be other meetings in between and afterwards, with surgeons, anaesthesiologists, ostomy nurses, and so on. Barring a bed shortage, I will have surgery to remove my tumours and radically rebuild how my bowels work on Thursday, July 26—exactly two months from today.

Today my wife and I took to the kids to the Cancer Agency for a regular kids' art therapy group. The girls loved it (my oldest said, "It's a bad reason to go, but it was so much fun!"). One thing we did there is paint this banner together:

We won't get to Cannon Beach this year, but we will go back as soon as we can. It's one of my favourite places, along with Crater Lake (also in Oregon) and Schooner Cove on Long Beach in Pacific Rim National Park (here in B.C.).

Labels: cancer, cannonbeach, colostomy, family, longbeach, pacificrim, surgery, therapy

This is another post not for the squeamish, just so you know.

As my wife noted to me today, it's easy to get a bit blasé at the Cancer Agency—everyone there is dealing with cancer, and it almost seems normal. But today, after my final radiation treatment (yay!) and an excellent Mexican lunch with our friend Steven, I took a brief nap in his guest room and then walked to St. Paul's Hospital to meet with my surgeon, Dr. Brown. His news was not unexpected, but it wasn't the best case scenario either.

The upshot: when I have my tumour surgery in July, Dr. Brown recommends removing everything in my bowel from the bottom of my sigmoid colon on down, leaving with me no functioning rectum, and meaning that I will need a colostomy bag for the rest of my life. Yikes.

Now, I figured that might be the case, but it was still difficult to hear straight up. I can't argue with Dr. Brown's conclusion. He wants to eliminate every trace of cancer he can get at. All the tissue that was previously found to be cancerous, all the associated lymph nodes, and a buffer of extra tissue to ensure, as best as possible, that nothing malignant lingers.

I've read a little on the topic in case it came to this, and colostomies aren't nearly as nasty as you might think. Plenty of people have them, and those people swim, and do sports, and live their lives with hardly anyone knowing about it. And, to be frank, I'm not too fond of my rectum right now anyway. Ahem. I'll get used to my new body functions, as I have with my daily insulin needles over the past 16 years. But this reinforces that my cancer is a Big Deal. A Very Big Deal. This is what it takes to try to stop the cancer from killing me.

And it is a big step. The procedure will effectively move my anus up and onto the side of my abdomen, and the one I've been using since I was born almost 38 years ago will be sewn up, gone. That is just weird.

Labels: cancer, colostomy, radiation, surgery

I've never
slept so much
pooped so much
lost so much weight
taken pills so much
had so much intestinal gas
showered and bathed so much
felt unplugged from life so much
stayed stuck in the house so much
watched so much Discovery Channel
missed so much feeling close with my wife, even when we're in the same house.

I thought it was getting better, but some of the side effects seem to be holding on to the bitter end. Then again, I have been taking poisons and getting pummeled with high-energy particle beams for a month and a half now, so I guess that shouldn't be a surprise.

I'm ready for it to be over. Damn am I ever. April and May have included some of the worst days (and nights) of my life.

My surgery coming in July is a scary concept, but if I think about it, the past several weeks have been like very slow, painstaking, relentless, not-directly-invasive surgery via chemoradiation, which I'm only going to start recovering from after my last radiation treatment on Tuesday. By comparison, the real operation will be over in one day, and then I can start getting better.

It won't be fun and games, but it will be decisive, and I hope the weather is good. My friend Simon may be having different surgery at the same hospital about the same time, so we can be summer painkiller buddies.

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

You know it had to be a tough week when I haven't posted to my blog for four days, and it was, but I'm finally in the home stretch. I finished my intravenous chemo one week ago today, and it hammered me in a nasty way over the weekend. Last night I took my last chemo pill, and I slept pretty decently, although it will still take a few days to flush that out of my system. And I have only two radiation treatments left: Friday and Tuesday. (Monday is a holiday.)

Also on Tuesday I meet with Dr. Brown to talk about when I'll have my surgery to remove the tumours. I already know it will be sometime between July 9 and July 22, so I have at least a month and a half to recover and try to gain back some of the 25 pounds (!) I've lost since Christmas.

Today I felt good. I had my radiation treatment, then had a last meeting with Dr. Ma, my radiation oncologist while my wife turned in my chemo forms and leftover pills. Then we went downtown and she had a haircut and I bought myself a new tripod (it's this model). That's the first time I've been interested in any of my hobbies for a few weeks. Here are some boring-but-photo-geeky sample pics:

Through this time, my wife has been amazing, running everything in our house and with our two daughters, including school, Guides, tae kwon do, and piano. They have all had to put up with my turning into a cranky, withdrawn shell of a man as the side effects got worse and I spent almost all my time in bed or in the bathroom, and lost in my own head. I'm starting to come out of that now. They are three of the best reasons for me to re-emerge.

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