Results tagged “pain”

Today my voice returned, after more than two months. Some tight scheduling in Coquitlam prevented a planned appointment here, so my dad, Air, and I drove to Surrey.

There, an ENT doctor injected one side of my vocal cords while his colleague manned the nose cam to view the process from the inside.

The result, so far, is a partial return of sound. My right cord is quite calcified, the doctor says, and may never firm up completely. So I have, for the moment, a voice whose pitch I can't control, but which might get better. It's louder, which helps my dad. It isn't whispery or raspy, which helps everyone else. It does the job.�We'll hear if it improves, which should be good for the relatively little time we all have left together.

My stupendously difficult climb from car to main floor in our house today tells me I won't be leaving in anything but a stretcher from now on—it was the hardest thing I've ever done. I'm now officially housebound, and even floor-bound.

I'm at the point with my cancer that the car has finally bumped down off the pavement and we're driving on gravel now. What I mean is, the end of the road is somewhere up ahead, not too far, and I'm not going back to smooth speedy travel, ever. To keep moving at a reasonable pace, I have to pay more attention to details, and a lot of stuff I previously took for granted requires effort—mine or someone else's. This has happened faster than I expected, but life often does.

Several doctors have helped me manage my symptoms, and the celiac block procedure I had last weeks seems to have helped with abdominal pain, for one thing. While my chest cough persists, it is not from fluid building up in my lungs. I am treating the cough, most often at night, with a drug that dries tissues out locally so I can more easily find a comfortable sleeping position. The Depends are doing their job too.

Both of my feet and lower legs are swollen, but that appears to be a regular consequence of my metabolism becoming wonky as the tumours interfere with my various bodily systems. The treatment? Elevate my feet, and wear super-tight compression stockings (I'll get thigh-high ones fitted in the next few days, ooh-la-la). I remain stupefyingly tired, especially on days like today when I decide not to take Ritalin to perk me up.

None of these symptoms will get much better. The only one that could is my voice, which has been nothing but a whisper for two months, but which I hope Dr. Anderson will inject or spray on April 25, and perhaps I'll be able to speak with my vocal cords again.

Real plans, for real. No really.

All the rest means that my wife Air and I are making plans, real plans, about what the next few weeks and months are going to look like. I am on the full B.C. Palliative Care benefits program—British Columbia seems to be in good stead when it comes to this somewhat uncomfortable specialty.

I have signed the official B.C. Do Not Resuscitate (DNR) form, so if I have a heart attack or other really drastic event, then my medical team—plus first responders and hospital staff—know that I don't have long to live, and don't want any overly-heroic treatments to keep me alive at any cost. In particular, there's no point in having me on a ventilator in intensive care when that space could go to someone who might make a full recovery and live a long life.

Emily the Burnaby Health Nurse comes again tomorrow to see what I might need here at home, so that I can stay as long as possible—and to determine who else on her team might be best to help my family and me figure that out. While Burnaby Hospital's Palliative Care ward is apparently extremely nice, and just down the hill, I'm not planning to go there.

Rather, we're physically preparing our house for me to live my last weeks to months here, and likely for me to die here too. Burnaby Health will even bring in a fully-adjustable hospital bed so I can set myself up comfortably.

Being the Decider

I may sound a little cold and matter-of-fact right now, but in truth it's surprisingly satisfying, even a bit joyful, for Air and me to be able to make decisions about how my life will end—and to know that these decisions will take effect not in some abstract future, but soon.

Personally I don't expect to live until autumn, and I don't know if I'll get very far into summer. But if that's the way it happens, I'd like to die during a beautiful Vancouver summer rather than one of our grimmer grey seasons. Once I'm dead there'll be no further experiences, so I may as well face a lovely city in the sunshine beforehand if I get the chance.

At the moment none of my doctors sees any particular single organ or physiological system as a big scary killer lurking to take me down suddenly, or with a series of cascading problems. More likely I'll continue to become weaker and more tired, and I may need some help breathing later. Then, eventually, weeks or a few months down this gravel road, I'll simply shut down, and I'll die. There won't be a Derek anymore.

That sounds like a decent way to go.

Not many people have seen me in the past two or three weeks. If you had, you'd probably say, "Derek doesn't look so good." And you'd be right. After the high point of my living wake early in March, I took a turn downhill.

Soon enough, I found it difficult to get myself out of the house for such simple tasks as walking our dog Lucy. Right now I don't have the strength to do even that, and I don't feel comfortable driving anymore either. Going out for dinner with the family, or friends? Out of the question.

A drag of a morning

Here, for example, was how a series of simple tasks went this morning. I dragged myself out of bed (a pure mind-over-matter exercise against my body), put on my bathrobe and slippers, and had Lucy come with me. I opened our back door so she could go out in the yard, and I followed her. Half-way down the back steps I had to sit down on the stairs: I didn't have the energy to get all the way down to the back yard in one go.

A few minutes later I managed it, walking down the rest of the steps and into the yard, and sat on our lawn chair while Lucy ran around and did her usual doggy business. Ten minutes later it was time to go back inside. I propped the chair up again the wall of the house and walked, very slowly, back around the side of the house, up the stairs, and into the kitchen. Where I promptly had to sit down again on the first chair I could grab.

I had planned to make myself a bowl of corn flakes, but such a simple task seemed daunting. Instead I went to lie down in bed for 15 minutes to recover, after which I was able to prepare the cereal—but before I was able to eat it, I puked in the sink. Afterwards, the cereal went down fine, and I followed it with a Ritalin, which I hoped might push me into the realm of "not completely exhausted" later in the day.

A slightly better afternoon

Sitting up in bed, I browsed a few websites and listened to CBC Radio. At some point I nodded off for half an hour while my wife and kids were out looking for paint colours for the kitchen. But I did wake up feeling perkier. Right now I'm on the back porch typing this in the vaguely-warm spring sunshine, with the dog once again snuffling about. I feel like a tired but functional version of myself, rather than the depleted and worn-out lump I did this morning.

I saw my family doctor yesterday, and he told me that is the pattern for cancer patients: the two major debilitating symptoms are pain and fatigue, and my pain is under reasonable control. He encouraged me to move around as much as I can—which is what I was trying to do during my sit-on-the-stairs experience today—and to keep my mind active. At my lowest, sometimes that in itself can be difficult.

I wonder how long it will be before I can no longer walk unassisted? Before I can't make a sandwich? Before I'm pretty much bedridden? No one knows the answers, not my doctors, not me, but the time will come. That's scary.

When Dr. Anderson, the ear-nose-throat (ENT) specialist I saw today, grabbed his nasal endoscope (which I fondly thought of as his "nose cam") and took a look down my throat—an interesting experience for me, certainly—he was surprised. As a result, he's not treating my laryngitis yet. Let's find out why.

He asked me to try to hum, and I did, producing no sound at all, as expected. One of the vocal folds in my larynx wasn't vibrating, also as expected. When I try to talk, only one of my two vocal folds becomes "adducted" into position, and with no second fold to vibrate against, no sound happens. That's what laryngitis, or dysphonia, is all about:

But the slack vocal fold wasn't the one everyone was expecting. With all the information in my cancer patient file, describing all the tumours in my lungs and around my spine, Dr. Anderson—like my doctors at the B.C. Cancer Agency's Pain and Symptom Management Clinic last week—figured some of those tumours might be affecting a particular nerve. That is the recurrent laryngeal nerve (RLN), which connects my brain to the left vocal fold.

Not the wacky nerve, not acid, not bacteria

For historical-evolutionary reasons, in most vertebrates (including human) the left nerve loops from the brain, way down into the chest, and then back up to connect to the left side of the larynx—yes, even in whales and giraffes, where the nerve makes very long detours. In my body, there are lots of opportunities in my chest for interference from tumours, swelling, and so on.

But the right nerve takes a more direct route from the brain to the larynx, and there's no evidence of cancer or anything else interfering with the performance of that nerve. And, in my larynx, the right side is the slack side.

Dr. Anderson peered around with his nose cam (glurk), and saw no evidence of scarring from injury, or stomach acid from my occasional vomiting, or bacterial infection—which the antibiotic I took last week would have addressed anyway. He asked me if my throat was or had been sore (no), if I had any troubles with choking when I tried to swallow (no), or if I had any throat spasms (also no).

Staying voiceless to reduce the risk

So he wants me to wait yet longer, and see if my vocal cords will heal themselves. Had my left vocal fold been slack, he probably would have treated it right away, because the source would be much more likely to be nerve interference, and thus perhaps permanent. Spraying or injecting the slack fold would snap it into the "adducted" position where the functioning one could vibrate against it. (I think he might use Teflon, though he didn't say.)

UPDATE: No, Teflon is not a likely agent, it seems, since there are newer and better things to try. So, no jokes about my non-stick vocal cords, I guess.

Sounds great, but he recommended against doing that to the right fold, because if it's not paralyzed by nerve damage, and isn't infected with bacteria, and doesn't seem to be affected by acid reflux from my stomach, it is much more likely to be something temporary, such as a virus. After all, my laryngitis began after my whole family developed a viral infection one weekend back in February.

I still have a chest cough, and my immune system is weakened, of course. Viruses can linger in my system for a long time, and if they've knocked out my right vocal fold, that could take weeks to heal. (My mother, by comparison, has been recovering from shingles for six weeks, much as my wife had to do back in 2004.)

So spraying my right vocal fold to lock it into position might be a bad idea, because if it can heal on its own, then both sides of my vocal folds will adduct naturally, and vibrate against each other, as they should. If it's locked into position, then only one side, the left side, will vibrate. It will work—though I guess my voice might sound different. I got the impression that the spray might also potentially injure the fold it locks into position, since that essentially forces it from abducted (open) paralysis to adducted (closed) paralysis.

Fear and frustration

It didn't occur to me until just now, and Dr. Anderson said nothing about this idea, but if we did snap the right side into a permanently adducted position, and later the RLN became injured because of pressure from my chest tumours and paralyzed my left vocal fold, I'd lose my voice again. I'm not even sure what the consequences and implications of that are. It would suck, to say the least.

So while it's tremendously frustrating, it does seem reasonable to wait. I will see Dr. Anderson and his nose cam again in a few weeks. I hope when I do, it will be with a naturally-recovered voice. If not, I'll plan to go with the spray then, and hope that will bring back my speech. In the meantime, if I talk to you, expect what I now think of as "the usual whisper."

While the general trend of my health is—as anyone should expect—downward, it's hard to know when I'm having a down day or two, as opposed to entering a new phase of declining health more generally. This past weekend, while my pain was better than average, my fatigue kept me pretty much stuck in the house hanging out with the dog, throwing up occasionally. I started to wonder whether I was suddenly becoming housebound. Yesterday's post gave you a clue to my mindset.

Yet today I was quite a lot better, more awake, able to do more chores (cleaning out the fridge, a bit of laundry), just generally feeling in a better mood, mentally and physically. I still didn't get out, but at least I felt like I could.

And tomorrow I will. I have an appointment to see an Dr. Anderson, an ENT specialist in Coquitlam, in the afternoon about my laryngitis. If anyone can find a solution, I'm hoping Dr. Anderson will be the guy. To have some part of my body start working relatively normally again would be a boost to my disposition. At the least, it would be nice if people calling on the phone could expect to hear and understand me clearly.

Last night, at bedtime, I put the new Adele album 21 in my headphones and settled down to sleep. Within three songs, I was crying hot tears, my face scrunched up so I couldn't see. I couldn't stop. I didn't want to. I sobbed silently through nine more tracks and 40 minutes in the dark (weeping with laryngitis is one more weird experience), enough that I was worried I'd short out one of the earbuds.

Music, that most human of instincts and inventions, can do that at its very best: reach past our rational minds, through any analysis or cynicism, beyond any physical pain or discomfort, directly to our emotions. Then it can draw those feelings out and tap them to the surface, even (especially?) when we didn't know just what was in there. I've had it happen: listening to the astounding student choir in the auditorium at the high school where my wife works, hearing Stevie Ray Vaughan play "Little Wing" by Jimi Hendrix, a few transcendent moments onstage with my own band in front of crowds big or small.

But Adele's "furious tornado of a voice" (as Pitchfork's Tom Breihan called it) pierces me. She's half my age, British, and likes to hit the pub with her friends, but that voice and the conviction behind it are why she's also a number-one selling artist in countries around the world right now. She's the queen of heartbreak. Every time she comes on with little but piano as backing, like on "Turning Tables" or "Someone Like You," and "Hometown Glory" or Bob Dylan's "Make You Feel My Love" from her previous collection, 19, I completely lose it...

Hang on. Have to take a break here for a second...

Heartbreak

Sheesh. It's like I'm a mopey '80s teen wallowing in my room to Robert Smith and Morrissey (and, back then, I wasn't). The funny thing is, Adele has a Cure cover on the album ("Lovesong"), and while it's very good indeed, it doesn't have the desperate edge of the original. I don't know whether it's the riff, or the way Smith sang "I will always love you" in 1989, but he made it clear that the love wasn't coming back, and maybe never got there to start with.

Adele's own songs often do accomplish that, in spades. Let's take one. At the end of her staggering BRIT Awards version of "Someone Like You" (the live recording went straight to #1 on the British charts), the announcer says something like, "You don't need dancers and pyro and lasers, do you?" Basically he's telling all the other acts at the awards, from Rihanna to Arcade Fire, "This girl can kick your ass any day of the week." And he's right. I'm sure she knows it, but whenever I've seen her end a song, she appears like she has to shake it off a bit, then she looks off to the side slightly, as if thinking, "Was that me?"

But there's a more subtle part of the performance that's worth examining. Here are the lyrics for the chorus:

Never mind, I'll find someone like you,
I wish nothing but the best for you, too,
Don't forget me, I beg,
I remember you said,
Sometimes it lasts in love,
But sometimes it hurts instead.

At the BRIT Awards and at every other live performance I've heard of that song, Adele sings the first four lines in the same, strong, high part of her vocal range, then pulls it down a little for the last two. It works great.

The moment

But listen to the version on the album. I think it's slightly too fast, but here's what I guess happened: producer Dan Wilson asked Adele to try something different in the chorus, to sing the third line ("Don't forget me, I beg...") higher than her normal range, where it almost cracks. It's not an unusual technique for even great singers to try straining on purpose, maybe creating some of the finest moments in popular music. (Think of John Lennon on the Beatles' "Twist and Shout," Roger Daltrey on the Who's "Won't Get Fooled Again," or the entire careers of James Brown, Janis Joplin, and AC/DC.)

For Adele, that moment, right there, the one line—"Don't forget me, I beg"—is the focus of the song, the crux of the album, the very keen point of the ice pick when it first hits the diamond and shatters it, the moment of heartbreak.

And here's why it, and the rest of Adele's songs, made me cry like that last night. There's the heartbreak of rejection, of unrequited love. There's the heartbreak of breaking up, of losing love. There's the heartbreak of getting dumped, of not being loved anymore. They ache, they seethe, they're horrible. That's what Adele makes her business singing about.

But worst of all is the heartbreak of having been in love, for years, and both of you still being in love. But one of you is going to die. And no one, neither of you, not anyone else, can do anything about it.

That's not what Adele is singing about, not directly. I hope she never knows how it feels, or if she does, that it's many, many years away. I didn't invite her voice there, but it seems to know, so when it breaks down my barriers and taps the depths, that's where it goes, and what comes out.

This weekend is brought to you by "The Big C" and the word phlegm—a word whose spelling I've always enjoyed. I do not enjoy horking it up all day, however. Time for bed.

UPDATE March 13: The coughing and phlegm have almost entirely subsided. I am much less exhausted than I was yesterday, though I am still pretty tired. Most annoying, in all my hacking, I pulled muscles on both sides of my ribcage and in both shoulder blades. I feel like I was tossed into a CFL football game. I hope I didn't actually crack any bones.

There are a couple of encouraging notes, however. First, I've been able to sleep on my left side, which I've always preferred, but which I've been unable to do for weeks, because of mysterious pains which also seem to have dissipated. Second, a teeny, tiny part of my voice seems to be coming back, the first sign in almost three weeks that I might regain the ability to speak.

I won't make any bets: my body has been a mess these past few days, and who knows what it will do tonight or tomorrow, but at least there are a few good signs. Now we need some damn spring weather.

I stopped chemotherapy and other treatments to fight my cancer back in November, but I certainly haven't stopped taking drugs. The latest addition isn't one I expected: Ritalin. No, cancer hasn't made me hyperactive. Quite the opposite, in fact. I'm often tired and listless, and when I caught a virus a couple of weeks ago, it not only gave me the persistent laryngitis I've been complaining about, it also knocked me so flat I could hardly get out of bed to eat or use the bathroom.

Knowing that, one of the doctors at the B.C. Cancer Agency's Pain and Symptom Management Clinic recommended the Ritalin, because one of its uses is treating excessive fatigue—as well as sleeping disorders such as narcolepsy. And it seems to work! If I take it with breakfast, I'm much less likely to need a long, long nap. One reason I made it through my living wake on Thursday was taking one mid-afternoon that day. And today, sluggish as all hell when my wife got home at dinnertime, I took one and perked up to be with the family all evening.

I can't take Ritalin daily, however. The doctor suggested I skip a day or two each week—"pyjama days," she called them—or I might develop a tolerance where I'd have to keep upping the dosage. Accordingly, I took none Saturday (which was fine, I even went out for dinner) or yesterday (which was a washout, sleepy and low-energy). It's nice to know that it's possible for me not to be a complete slug most of the time.

What other medications am I on? Oh, it's a long list: domperidone, to reduce reflux and vomiting; morphine, both long- and short-acting, to counteract back and torso pain from my tumours; Imodium, to try (usually unsuccessfully) to control bowel symptoms and diarrhea; Fragmin, an anticoagulant injection to avoid further blood clots; and Tylenol and other painkillers if I have a fever or further aches.

And of course there are long-acting Lantus and short-acting Humalog, two varieties of customized human insulin made by genetically engineered bacteria. As of this month, I've injected insulin multiple times a day for 20 years, since March 1991, when I first developed Type I (a.k.a. juvenile) diabetes. Without insulin, and the associated poking of my fingers to test my blood glucose levels multiple times daily, I'd have been dead back then, age 21, when my pancreas stopped making insulin of its own.

Without insulin injections, in other words, I would never have lived to get married, have kids, write a blog—or develop malignant colorectal tumours. I may only live half a "normal" lifespan because of my cancer, but for most of human history, without modern medicine, diabetes would have killed me before I even got half this far.

It's March 1, and spring approaches. What was I thinking about in the previous 10 years on this date? Since my blog is now old enough, we can find out:

• 2001: I had just re-joined my old band.
• 2002: I highlighted some of the websites I worked on, and an online style guide I didn't.
• 2003: I waited a few days, then spewed out stuff about digital cameras, earplugs, software piracy, cheap pens, and the Editors' Association of Canada.
• 2004: I went on one of my regular rants about how human brains misunderstand statistics.
• 2005: I marked the death of Jef Raskin, irascible pioneer of computer interfaces.
• 2006: The bizarre and unlamented iPod Hi-Fi, women in science, and the Internet as oxygen.
• 2007: I learned a good lesson about painkillers.
• 2008: I almost passed out in a messy and embarrassing way.
• 2009: A fantastic drive to Tofino on Vancouver Island.
• 2010: The fun-yet-schockingly-lame 2010 Olympic Closing Ceremony.

It's unlikely I'll live until March 1 next year, so that list should now be complete.

Christopher Hitchens holds some political views with which I disagree, but like him, I am a staunch atheist. Last summer he found out that he, like me, has stage 4 cancer, which will probably kill him, again like me, fairly soon. He has talked and written a fair bit about it, eloquently of course.

Most recent is this video interview (with text transcript, via Jerry Coyne), where he talks almost entirely about his cancer and the prospect of his own death. He still finds time to tear into Mother Teresa, though:

He says many things that mirror my own thoughts. However, perhaps because his cancer is so much more recent, he still thinks a treatment might come soon to keep him alive. He also still wants to contribute to treatment experiments, regardless of whether they might help him directly, which something I have decided I no longer want—I have suffered enough in four years.

Hitchens realizes he might never again see his native Britain, because travel is becoming more and more difficult. He acknowledges that, even if he were to know how many months he might have left before he dies, he'd need to know what kind of months those would be before he could decide what to do with them. He talks of profound weakness, of undertaking a simple task one day that might have been impossible the day before, and might be impossible again the next. All give me pangs of recognition.

He and I have never met, or spoken, or communicated in any way, but I feel kinship with Christopher Hitchens. He is 20 years older than I am. Yet we are both on a short road to our deaths, which will be our end, and we both know it.

Compiling 2010 and a couple of entries from 2011, this concludes my links to every cancer post I've made on this blog over the past four years. See part 1 (2006–2007), part 2 (2008), and part 3 (2009) for the rest. 2010 began optimistically, with my tumours shrinking, but by the end of the year they were growing again, and I'd run out of treatments. I may not live long enough to blog the end of 2011.

Following my list of cancer blog posts in part 1 (2006–2007) and part 2 (2008), this batch covers 2009. By then, I was coming to realize that my cancer wasn't going to be cured. At best, it seemed, I might be able to manage it as a chronic condition long-term, perhaps. And that's what I did for much of the year, taking cediranib daily and managing the awful intestinal side effects, until that drug stopped working, and I moved back to more traditional and awful chemo.

Here is the next batch of my complete index of blog posts about my cancer and treatment. Part 1 covered 2006 and 2007. This one comprises 2008, with part 3 rounding up 2009 and part 4 finishing off with 2010 and a bit of 2011.

In the exactly four years since I found out I have cancer, this has not been exclusively a cancer blog, but I have written a lot about it. Since you probably missed some (and also because I've forgotten much of what I wrote), I'm listing links to every post I've made on the topic. Let's start with December 2006 (when I didn't know what I had) through December 2007. See part 2 (2008), part 3 (2009), and part 4 (2010–2011) too.

The usual "perhaps too much information" warning applies to this post, if you're not fond of tales about bodily fluids. Last month I wrote:

The pattern has become this: roughly a week after I first receive the chemo dosage, my body decides to purge everything out of my gastrointestinal tract.

It's actually remarkable how consistent that pattern has become. Irinotecan, the main drug in my current chemotherapy cocktail, has diarrhea as its primary side effect. But you'd figure, as with most drug side effects, that would happen pretty much right away after I first take it.

Not for me. I have chemo every 14 days. Almost exactly a week (in my four treatments so far, either six, seven, or eight days) after my treatment begins, what arrives is an event I now call the Big Biweekly Butt Blowout. I had chemotherapy last Monday, November 1. Last night, November 7, with little warning, things got started around 6 p.m., and I was able to leave our downstairs bathroom around 8:15. As my guts calmed down over the rest of the night, I was able to get to sleep before midnight.

Of course it sucked, and I'm sorry my family had to listen to me barf up my dinner. But I quickly realized what was going on, and having been through it three times before, I knew roughly what to expect, as well as what I needed to do to ride it out. When I went downstairs with a few supplies, I told my wife, "I'm heading down to the bathroom. I'll probably be there for a while." I was quite right.

While I'm tired today, things are better. I had a late breakfast. The dog has been her usual great snuggler. If the rain continues, I'll meet the kids after school to give them a ride home. This week should be an improvement, before I get started with the process again next Monday.

Back in 2007, before I had my big cancer surgery, I was taking morphine tablets a couple of times a day. As of yesterday, I am again—quite possibly indefinitely. It's because of that pain I've been having in my torso, which so far has no obvious source, but which I'm guessing is simply the result of my ever-growing tumours. In recent weeks it's been keeping me from going to sleep easily, or waking me up in the night. I was taking too many Tylenol 3 and Advil pills. For someone like me, morphine is a better and safer painkiller.

The drug is pretty amazing stuff, really. When I had my last partial bowel blockage in 2008, it was excruciating. But a single injection of morphine abated the pain within minutes, and was able to keep it at bay in hospital while I waited for my body to clear the obstruction. So far the low-dose, twice-daily pills are working well against my current pain, and I have shorter-acting tablets I can take if things act up in between.

The team at the Pain Clinic yesterday also prescribed me Zopiclone, a sleeping pill, in case I needed it. Last night I tried half a tablet because the morphine hadn't fully kicked in by bedtime, but so far I'm not a fan. I've been in a zombie-like state most of the day, much more so than my usual chemo-recovery Thursday. I'm certainly in no shape to drive or operate heavy machinery. Or light machinery, for that matter. I'll keep the sleeping pills in reserve in case I really need them. But I think I'll sleep fine just reducing the pain first.

For the first time in a month, I'm going back for more chemotherapy this afternoon. Dread is hardly the word to describe my state right now. Even after a couple of extra weeks off from the treatment because of that nasty blood clot, I still don't feel well.

I continue to have back and torso pains that move around, requiring painkillers (mild ones, so far), and which have sometimes kept me awake. The only appointment I could get at the B.C. Cancer Agency Pain Clinic is on Wednesday, when I'll still be in pretty sad shape from the chemo—but I need to go to help manage my symptoms. My intestinal tract is still periodically misbehaving itself, which is never fun. I'm often weak and tired, and though the scale tells me I haven't lost more weight, I'm still too skinny, but I can't eat as much as I used to either because of the above-mentioned problems.

That said, Halloween was fun yesterday: my wife and daughters and our friend The Badger wandered the neighbourhood collecting goodies, while I manned the door here at home. We had a pretty big mob of kids, though because of a larger-than-usual candy purchase, we still have lots of supplies left over. My youngest went so hard at the trick-or-treating that she didn't wake up till 9:30 this morning—I'm working to get her to school for lunchtime. I had fun setting up a new (to us) iMac I acquired from Alistair. The 24" screen is huge in our kitchen.

The next few days are going to suck for me and for my family. You'd think we'd be used to it, but no. Cancer doesn't give us even that luxury.

During my brief stay in hospital before the weekend, I had been afraid that my major diarrhea side effects from chemotherapy would kick in while I was there. They didn't, which was fortunate. They waited until last night.

My medical team tweaked my last chemo treatment on October 4 to try reducing this particular side effect, but that made no difference. The pattern has become this: roughly a week after I first receive the chemo dosage, my body decides to purge everything out of my gastrointestinal tract. Yesterday, after a perfectly decent day limping around on my still-swollen leg, helping my kids with homework and school projects for next week, I headed down the hall about 7:45 p.m. for a routine trip to the bathroom, but then I couldn't leave.

Good thing the kids had TV and video games, as well as the initiative to make one of our beds and load the dishwasher. I didn't see them for awhile.

Clear it out

I was in the bathroom for four hours, on the toilet, lying on the floor in various positions to try to relieve gas pressure, in the shower with hot water pouring on my back to reduce cramps, and so on. I puked up my dinner as part of the process. My wife Air came home from an evening out and brought me a cold glass of water and a couple of tablets of Imodium to try to slow things down. I took them and then immediately barfed them up again—the first time in my life I've ever thrown up ice-cold vomit, which was weird.

Eventually, everything slowed down on its own, once there was basically nothing left in my guts to purge. Around midnight, I came to bed (only then noticing that yes, my left leg still hurts from the blood clot, but perhaps a bit less) and lay there shaking. I got some Imodium down, as well as some Tylenol for my entire lower abdomen, which by now was achy and sore. I had to pop back to the bathroom a few times during the next three or four hours as well, but I got sleep in between, especially after I took an Ativan to calm my by-now-jangly nerves.

Our dog Lucy, who sleeps between my wife and me on our bed, was repeatedly freaked out by the growling monster noises emerging from my belly under the covers. She almost barked at them once.

A long night

I slept till almost noon this morning, and I feel tremendously better. Tired, yes, but my insides feel much more normal. Even my leg, which I'd almost ignored through the ordeal, seems less swollen, though I'm still limping when I walk on it—so it improved while I was distracted. I ate some cereal—the first food to stay in my system for about 17 hours. I'm hoping to make it to a family Thanksgiving dinner this evening, though I'll probably be pretty subdued.

It's been quite a week:

• chemotherapy
• three days of recovery
• an unexpected blood clot leading to an emergency hospital admission
• a return home with a gimpy leg
• a full night of intestinal chaos

It sucked, for me and for my family. It was hell and torture—as in, if I had to do this stuff for a long time, it might just drive me off the deep end into raving, pain-and-nausea–induced insanity. It was bad.

Right now my instinct is to postpone my next planned chemo, scheduled a week from today. I want to recover.

Yesterday morning, I felt all recovered from this week's chemo, only to find my left leg mysteriously swollen. It also hurt to walk on. After the kids left for school, I saw my doctor, who immediately sent me to Vancouver Hospital for an urgent ultrasound.

It was good he did, because my swollen leg turned out to be the result of a nasty blood clot. So I'm in hospital for a few days and will continue taking blood thinners when I get out. Clots like this are a risk with my colorectal cancer and chemo, unfortunately.

Thanks for all the kind messages on Twitter and Facebook. So far hospital food is surprisingly decent (lunch was a tasty frittata with soup and an excellent little salad), I got a private room (even my own small washroom), and I'm feeling okay.

Right now I'm restricting visitors to family only, since I'm still pretty tired. But I'll keep you posted.

UPDATE: I'm home already, the same night. Once things got under control the hospital felt it safe for me to leave after dinner. I'm back taking daily Fragmin (dalteparin) injections—the same stuff I used to take (and should have kept taking, it seems!). And I'm still hobbling around while the swelling subsides. It's good to have a bath at home and go back to the big comfy bed. I missed my wife and kids and puppy, even in a short absence.

You'd think I'd be able to predict my chemotherapy side effects fairly well by now. After all, I've been at it for three and a half years. I thought so too. But oh no. (This post will officially count as Way Too Much Information for some of you, particularly if you're squeamish. You've been warned.)

A week ago Monday, September 6, I had my first chemo treatment after a six-week break, and as expected, I felt like crap for a few days afterwards, then started to recover. I had a few random episodes of vomiting, as well as intestinal cramps, but again, those were nothing new. Then, a couple of days ago, more than a week after my treatment, I was suddenly hit with tremendous diarrhea, coupled with puking up my entire lunch into the downstairs bathtub, and violent cramps that extended from mid-afternoon well into the evening. Eventually things calmed down with some medication and time. But even yesterday I was still a gassy, wincing mess.

Today seems better, and there's no indication I'll be in the bathroom for hours again. I've even been eating well. The intestinal chaos is, unfortunately, an expected side effect of irinotecan, but the week-long delay before it happened was a total surprise to me. I'll have to see if there's a similar pattern next time, and I also have to make sure that I keep anti-diarrhea medicine handy at all times if it remains unpredictable. Unfortunately, I've also lost about ten pounds since before the chemo, and I have to try to keep the calories in to maintain my weight. Wanting to avoid the horrible Boost and Ensure drinks I've occasionally had before, I'm just working on eating good, substantial foods I can tolerate.

There was one funny consequence, however: near the end of the ordeal on Tuesday evening, as everything was clearing out and I was lying sweaty and exhausted on the bathroom floor, I had a single fart that lasted at least 30 seconds, perhaps 45. Despite my horrible condition, it made me laugh out loud.