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The last post

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Here it is. I'm dead, and this is my last post to my blog. In advance, I asked that once my body finally shut down from the punishments of my cancer, then my family and friends publish this prepared message I wrote—the first part of the process of turning this from an active website to an archive.

If you knew me at all in real life, you probably heard the news already from another source, but however you found out, consider this a confirmation: I was born on June 30, 1969 in Vancouver, Canada, and I died in Burnaby on May 3, 2011, age 41, of complications from stage 4 metastatic colorectal cancer. We all knew this was coming.

That includes my family and friends, and my parents Hilkka and Juergen Karl. My daughters Lauren, age 11, and Marina, who's 13, have known as much as we could tell them since I first found I had cancer. It's become part of their lives, alas.


Of course it includes my wife Airdrie (née Hislop). Both born in Metro Vancouver, we graduated from different high schools in 1986 and studied Biology at UBC, where we met in '88. At a summer job working as park naturalists that year, I flipped the canoe Air and I were paddling and we had to push it to shore.

We shared some classes, then lost touch. But a few years later, in 1994, I was still working on campus. Airdrie spotted my name and wrote me a letter—yes! paper!—and eventually (I was trying to be a full-time musician, so chaos was about) I wrote her back. From such seeds a garden blooms: it was March '94, and by August '95 we were married. I have never had second thoughts, because we have always been good together, through worse and bad and good and great.

However, I didn't think our time together would be so short: 23 years from our first meeting (at Kanaka Creek Regional Park, I'm pretty sure) until I died? Not enough. Not nearly enough.

What was at the end

I haven't gone to a better place, or a worse one. I haven't gone anyplace, because Derek doesn't exist anymore. As soon as my body stopped functioning, and the neurons in my brain ceased firing, I made a remarkable transformation: from a living organism to a corpse, like a flower or a mouse that didn't make it through a particularly frosty night. The evidence is clear that once I died, it was over.

So I was unafraid of death—of the moment itself—and of what came afterwards, which was (and is) nothing. As I did all along, I remained somewhat afraid of the process of dying, of increasing weakness and fatigue, of pain, of becoming less and less of myself as I got there. I was lucky that my mental faculties were mostly unaffected over the months and years before the end, and there was no sign of cancer in my brain—as far as I or anyone else knew.

As a kid, when I first learned enough subtraction, I figured out how old I would be in the momentous year 2000. The answer was 31, which seemed pretty old. Indeed, by the time I was 31 I was married and had two daughters, and I was working as a technical writer and web guy in the computer industry. Pretty grown up, I guess.

Yet there was much more to come. I had yet to start this blog, which recently turned 10 years old. I wasn't yet back playing drums with my band, nor was I a podcaster (since there was no podcasting, nor an iPod for that matter). In techie land, Google was fresh and new, Apple remained "beleaguered," Microsoft was large and in charge, and Facebook and Twitter were several years from existing at all. The Mars rovers Spirit and Opportunity were three years away from launch, while the Cassini-Huygens probe was not quite half-way to Saturn. The human genome hadn't quite been mapped yet.

The World Trade Center towers still stood in New York City. Jean Chrétien remained Prime Minister of Canada, Bill Clinton President of the U.S.A., and Tony Blair Prime Minister of the U.K.—while Saddam Hussein, Hosni Mubarak, Kim Jong-Il, Ben Ali, and Moammar Qaddafi held power in Iraq, Egypt, North Korea, Tunisia, and Libya.

In my family in 2000, my cousin wouldn't have a baby for another four years. My other cousin was early in her relationship with the man who is now her husband. Sonia, with whom my mother had been lifelong friends (ever since they were both nine), was still alive. So was my Oma, my father's mom, who was then 90 years old. Neither my wife nor I had ever needed long-term hospitalization—not yet. Neither of our children was out of diapers, let alone taking photographs, writing stories, riding bikes and horses, posting on Facebook, or outgrowing her mother's shoe size. We didn't have a dog.

And I didn't have cancer. I had no idea I would get it, certainly not in the next decade, or that it would kill me.

Missing out

Why do I mention all this stuff? Because I've come to realize that, at any time, I can lament what I will never know, yet still not regret what got me where I am. I could have died in 2000 (at an "old" 31) and been happy with my life: my amazing wife, my great kids, a fun job, and hobbies I enjoyed. But I would have missed out on a lot of things.

And many things will now happen without me. As I wrote this, I hardly knew what most of them could even be. What will the world be like as soon as 2021, or as late as 2060, when I would have been 91, the age my Oma reached? What new will we know? How will countries and people have changed? How will we communicate and move around? Whom will we admire, or despise?

What will my wife Air be doing? My daughters Marina and Lolo? What will they have studied, how will they spend their time and earn a living? Will my kids have children of their own? Grandchildren? Will there be parts of their lives I'd find hard to comprehend right now?

What to know, now that I'm dead

There can't be answers today. While I was still alive writing this, I was sad to know I'll miss these things—not because I won't be able to witness them, but because Air, Marina, and Lauren won't have me there to support their efforts.

It turns out that no one can imagine what's really coming in our lives. We can plan, and do what we enjoy, but we can't expect our plans to work out. Some of them might, while most probably won't. Inventions and ideas will appear, and events will occur, that we could never foresee. That's neither bad nor good, but it is real.

I think and hope that's what my daughters can take from my disease and death. And that my wonderful, amazing wife Airdrie can see too. Not that they could die any day, but that they should pursue what they enjoy, and what stimulates their minds, as much as possible—so they can be ready for opportunities, as well as not disappointed when things go sideways, as they inevitably do.

I've also been lucky. I've never had to wonder where my next meal will come from. I've never feared that a foreign army will come in the night with machetes or machine guns to kill or injure my family. I've never had to run for my life (something I could never do now anyway). Sadly, these are things some people have to do every day right now.

A wondrous place

The world, indeed the whole universe, is a beautiful, astonishing, wondrous place. There is always more to find out. I don't look back and regret anything, and I hope my family can find a way to do the same.

What is true is that I loved them. Lauren and Marina, as you mature and become yourselves over the years, know that I loved you and did my best to be a good father.

Airdrie, you were my best friend and my closest connection. I don't know what we'd have been like without each other, but I think the world would be a poorer place. I loved you deeply, I loved you, I loved you, I loved you.

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.


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I'm still here, with a list of things that sometimes happen.

But first, I have three new rules, things that always happen, no matter how annoying...

Derek's Rule #1: There's always more poop.
Derek's Rule #2: There's always another phone call.
Derek's Rule #3: Even when "no one's coming to visit today," someone is always coming to visit today, maybe seven or eight people.

Fortunately, so far my wife Air has to handle only the last two. Here endeth the rules.

So, sometimes I'm hacking and coughing away, sometimes we get a proper motorized hospital bed installed in the living room for me, sometimes I'm up in the bathroom in the middle of the night after an entirely fictionalized dream about the Poet Laureate of the United States, and sometimes my wife and daughters and friends have completely renovated the basement while I've spent most of my time asleep.

Sometimes people deliver cases of Diet Cherry Coke at odd hours; sometimes the delivery is a care package with three cases, a nylon athletic bag, and clothes my daughters wear to school the next day; sometimes I crack a cold can of the stuff just to feel the bite of that first sip at 3 in the morning; sometimes it takes me ages to read through my Facebook messages and Twitter replies and blog comments and email; sometimes I'm frustrated by email lists that still won't unsubscribe me.

Sometimes Air and I acknowledge that we're distracting ourselves with all these other things, because I'm dying, and it's obvious now. And then we sit on the hospital bed, which is quite comfortable, and we cry.

Diet Cherry CokeNow that we have the trivia out of the way, I'll get to what you really want to know: what's the situation with the Diet Cherry Coke and Easy Cheese?

In short, you guys are great. I've had so many friends drop by with a supply of one or the other or both, we're getting nicely stocked up. (If it was in the evening or nighttime, I either missed you or was in pretty sad shape—sorry Boris and Rachael.) The Easy Cheese has made a good snack on crackers or toast, and actually tastes more like cheese than I remember. We're building a little wall of the cans in one of our cupboards.

The Diet Cherry Coke situation is even better. Being a drink, we go through it faster, but people are delivering it at such a rate that there's no shortage. And just as I remember, I really, really, really like it. It has, in fact, replaced coffee and in my diet, since even first thing in the morning I'd rather have the nice cold bite of a fresh can of Diet Cherry Coke than a cuppa joe.

In my correspondence with the Diet Coke folks (see below), I have also found out the big secret. Yes! The answer is here! Why do they not sell Diet Cherry Coke in Canada? Is it a grand conspiracy, a secret plan to keep this delicious beverage from us, a sub rosa war with Canada Dry and Orange Crush? Here's what Teresa from Coke wrote:

There does seem to be a very loyal following for the beverage here in Canada, though demand is not high enough for us to produce it for the Canadian market.

Sigh. Simple market supply and demand. There are lots of people like me who enjoy Diet Cherry Coke (and Cherry Coke), some quite enthusiastically—but not enough to make and sell it here. Damn, I wish it were something more sinister.

Coke has scheduled April 19 (next week) for their "care package" of Diet Cherry Coke products to arrive at my house via FedEx Ground, so I'll be interested to see what that includes. But if you've been planning to bring some cans of Diet Cherry Coke cross-border for poor cancer-riddled me (oh, as well as Easy Cheese), then keep it comin'. No one will be manufacturing it to sell here anytime soon.

On the gravel road

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pavement-ends-closeupI'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.

So much for being diaper-free

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Back in 2001, when my youngest daughter toilet-trained herself at 18 months of age, I thought we'd be a household free of diapers for decades to come. Sure, there'd be (and has been) the occasional night of babysitting, but we figured we wouldn't be buying any more diapers until any grandchildren came along.

Well, maybe not so much. (Some text below might be Too Much Information, just to warn you.) It's been well over a year since I started wearing small protective pads to avoid accidents, especially at night, but a couple of very close calls last week have demanded that, at night, I wear a full set of Depend adult diapers. Yes, the same kind Betty White keeps making jokes about, and that prompted the hilarious "Oops! I Crapped My Pants!" faux-ads on Saturday Night Live a few years ago—no, the video won't play outside the U.S.

They're essentially the same as the diapers my kids used to wear a decade ago, merely a lot bigger, and without the cutesy girl patterns and prints. The manufacturer, Kimberly-Clark, also makes Huggies, which is only sensible. But man, they're expensive! Once I sort out the proper size, we'll probably purchase them at Costco, where they work out to about a buck apiece.

I thought that if I ever needed Depends, then admitting it would be humiliating for me. But after almost five years of cancer treatment, including radiation, surgery, chemotherapy, vomiting, blood, bodily fluids of many others sorts, and an ileostomy, it's just "meh." My wife Air and I were in the car last week, and I simply said to her, "I need to buy some Depends." She went and picked up a package for me soon after.

Our friends Jen, Neil, and their new baby Isaac dropped by yesterday for a nice long visit. Holding a sleeping newborn remains a great way to bring down my stress levels. Anyway, when we arranged the visit, my first thought was, "Hey, now we'll have two guys in the house with diapers."

It's not really funny, but it was true.

As my health has taken a sudden decline, some of you (thanks especially to my parents, my in-laws, and Beth) have offered to cook us food that we can freeze and reheat, and that has been quite helpful. But not everyone likes to cook, yet many of you still want to give me a hand somehow. So here's a suggestion you might not have thought of. (It only hit me last night.)

UPDATE: It turns out that Coca-Cola U.S.A. found this post, and will be sending me "a small supply" (I.e. not a semi truck) of Diet Cherry Coke. Wow! Thanks to them.

UPDATE 2: Of course my network of friends is even faster. Sylvia dropped by today with both Diet Cherry Coke and Easy Cheese, courtesy of her visiting uncle. Another thanks!

My family and I live in Vancouver. When we travel to the U.S., we often pick up a couple of things that are simply unavailable here. One is Diet Cherry Coke. No, nothing weird, none of the bizarre combinations of flavours that the soda companies keep experimenting with. Simple: Diet. Cherry. Coke. Like this:

Diet Cherry Coke, nectar of the gods

I have never figured out why this wonderful drink, easily available just across the border in Blaine, Washington, has never been for sale in B.C.

The second is a true guilty pleasure. It's Kraft Easy Cheese, which sprays out of a can onto your cracker or other eating surface:

Easy Squeeze Cheese 1

In the 1970s, we could buy something similar here, but I haven't seen it in a Canadian grocery store in decades. No particular flavour (Cheddar, Sharp Cheddar, whatever) is my favourite, it's the squeeze-cheese experience that I enjoy.

So if you're a Vancouverite travelling to the U.S.A., or you're a U.S. resident visiting Vancouver, I'd be happy to reimburse you for the cost of some Diet Cherry Coke, some Kraft Easy Cheese, or both.

And if you say that those are horrible food-like substances that will give me cancer, I will just laugh and laugh.

The time will come

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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.

Twenty years on

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Derek at His Thinnest (1991)In 1991, I had finished my Marine Biology degree and was part-way through a non-fiction writing diploma at the University of B.C. On Spring Break in March, I visited my parents, who were then living in Toronto. I didn't feel well: tired, cranky, dehydrated, out of sorts in many ways. Each night, I had to go to the bathroom several times, which was unusual for me at the time. I was losing weight. My vision was a bit funny, and I was unusually hungry. But I was only 21 years old, in strong health, regularly riding my bicycle to school.

Perhaps I had a kidney infection, but I wasn't sick enough to see a doctor—I would wait until I returned to Vancouver. When the time came to do that, I was skinnier than ever, constantly thirsty, fatigued, and grumpy as I boarded the plane. I chugged free ginger ales the whole way back across the country. (I later realized this was a bad idea.)

Too sick to wait

I arrived on a Thursday, and was getting even sicker. I phoned my doctor's office as soon as I got home to make an appointment, but the soonest he could see me was Monday. I went to bed. And stayed there. I was too weak and tired to do anything on Friday or Saturday. My roommates were worried about me: they'd seen how much I'd thinned out while I was away, and how much weaker I was.

They decided I couldn't wait till Monday: I was too ill, and I was going downhill fast. They drove me to Burnaby Hospital's Emergency department, no arguments from me allowed. Within minutes of being brought past triage, a doctor smelled my breath and figured out what was going on: the distinctive sickly-sweet scent of ketoacidosis, caused by my body breaking down muscle and fat instead of digesting food.

It was almost certain that I had type 1 diabetes. Sometime in the past few weeks, my pancreas had stopped producing insulin, preventing my body from metabolizing the food and drink I'd been consuming. Glucose levels in my blood had been rising and rising, and every meal and sugary drink I consumed had been making things worse.

A quick blood test confirmed it. For normal people, glucose is dissolved in the bloodstream at concentrations between 4 and 8 millimoles per litre (mmol/L). (Some other countries, such as the U.S., measure in milligrams per decilitre, where those readings would be between 70-140 mg/dL.) That's normal, between 4 and 8. What was my reading that night in the hospital?

Thirty-two! Four times the highest regular reading, and almost off the scale for most consumer blood-glucose measuring devices.

I almost smacked my forehead. I'd learned about diabetes during my biology degree. I had every sign and symptom in the book. But it had never occurred to me that I might develop the condition: I didn't know of any family history, I was a strapping young guy, and yet I was actually older than most people who get the disease. It is an autoimmune disorder, where my own immune system attacked and destroyed the insulin-producing cells in my pancreas, and most type 1 diabetics first develop it around puberty, which is why it's also known as juvenile diabetes.

Learning to manage

But there I was, diabetic. The staff started giving me insulin, rehydrating me, and getting my electrolytes and other body chemistry back in balance. They started to explain diabetes to me in the simplest possible language, but I stopped them and asked if they could track down a textbook. Over the next few days I'd need to learn how to measure my blood sugars and inject insulin to control them, along with adjusting what, how much, and when I ate. Exercise and stress affect things too. I figured if I read some background physiology on the disease, I'd be better prepared.

Soon enough I was admitted to a regular ward, and soon enough after that, feeling healthy and starting to regain some weight, I was bored. But I still needed to learn how to manage my diabetes, something I knew I'd have to do the rest of my life. I learned as much as I could then (I couldn't leave the hospital without the basics), and more afterwards at various clinics over the years.

And for 20 years now, I have managed it. Through university, jobs, marriage, children, and especially during my cancer treatment—which diabetes makes even more complicated—I've been keeping my blood glucose under control. Not too high, not too low. I measure several times a day by poking the end of a finger and having a tiny meter read a drop of my blood. Enough insulin to handle my meals, but not too much. I inject that at least four times daily. Adjustments for exercise. Awareness of how it feels if my blood glucose suddenly goes low, and what to do about it (quick answer: down a can of Coke).

I always figured I would reach this 20-year milestone. Diabetes hasn't been cured, but modern treatments, with accurate portable meters and genetically-engineered insulin, make it easier than ever for us diabetics to live relatively normal lives.

While I haven't been perfect at the task, I've done pretty well, and have avoided any complications for two decades. One twisted consequence of my terminal cancer is that now I won't face them at all, since any complications that did arise would be decades away. I won't live that long.

Without those modern treatments, I would have died early in 1991, and never gotten married, had kids, started a blog, or developed cancer. That's certainly something.

The usual whisper

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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:

Vocal cord diagram

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."

Appointment set

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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.

Still nothing

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What is the verdict following my full weekend (62 hours) of self-imposed speechlessness? No effect whatsoever: my laryngitis (or, to introduce another term, dysphonia) remains in full force, and a whisper is still about the best I can do. So among the doctors' referrals I'm waiting for, I'm hoping the otolaryngologist (ear, nose, and throat) specialist contacts me soon.

Tomorrow it will be a full month since I stopped being able to talk full voice, or sing, or be heard in any but the quietest environments. It's become pretty damn frustrating, especially for someone who's usually as talkative as I am. Nor did I find the task of not talking on Saturday and Sunday the least bit fun.

The weather isn't helping. I perked up slightly yesterday when the sun came out, but Vancouver has returned to grey spring drizzle today. My aunt and uncle had enough of it last week, and took one of their regular trips to the Nevada desert. I can understand their motivation.

Vow of silence

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I've now had laryngitis, preventing me from speaking in more than a whisper or a rasp, for 24 days. I saw my doctors at the B.C. Cancer Agency yesterday, and they are referring me to an ear-nose-throat (ENT) specialist as soon as possible. Despite a couple of minor encouraging signs this week, simple rest and fluids didn't work, and an antibiotic didn't work.

My friend Evie suggested early on that it could be result of, or exacerbated by, a type of acid reflux. That's among the most common causes of laryngitis, and treatment for reflux (which she didn't know she had) cleared hers up after four weeks. It could be something more exotic, however (pressure on the body's most famous nerve, the RLN?), with potentially more exotic treatments (spraying one side of my larynx with Teflon?).

Anyway, we'll see what the ENT specialist says. In the meantime, my wife and kids are away for a few days, so I'm going to take the chance tomorrow (Saturday) and the day after (Sunday) to rest my larynx by not speaking at all. No whispering, no rasping, no nothing. Most of you won't notice, since you only see what I type anyway.

But I won't answer the phone. Whoever leaves a message will have to have some other way—SMS, text chat, Facebook, Twitter, email—for me to communicate back. Anyone seeing me in person will get messages written out on pieces of paper (yes, that's faster than an iPad, shut up).

Oft-time loner that I am, I suspect I might enjoy it a bit.

P.S. Yesterday my wife tweeted that I have "vocal cord paralysis," which alarmed a few people. I'll note that "vocal cord paralysis" and "laryngitis" mean the same thing (as does "I've lost my voice"): my vocal cords won't vibrate to produce sound. They describe a symptom, but not what's causing it, or what could treat it. A different name need not mean things are worse, or better, or different at all.

A Sesame Street moment

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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.

The drugs

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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.

My living wake

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A "Living Wake" for Derek K. MillerA dying man can wish for many things, but one of them might be to have a party with many family and friends: like a funeral, memorial, or wake, but actually being able to be there, before he dies. That's exactly what my wife Air put together for me a couple of nights ago, on March 3. We had a "living wake" at the newly-renovated Waldorf Hotel in East Vancouver, with a couple of hundred of the people in our lives joining us for a great Lebanese buffet, lots of mingling and chatting, and some fine live rock-n-roll music from my old bandmates and me, as well as my friends in Vancouver's legendary group Odds.

We couldn't throw the invitations wide open because fire regulations restricted how many people were allowed in the grand tiki-themed room in the Waldorf's basement—and we wanted to make sure that the people who came really were those I knew, and didn't get crowded out. After all, it was a wake, not just a party. Luckily, we didn't have very many uninvited door-crashers (and a few guests missed out because of flu and other illness), so we stayed within the limit, and it all worked out.

A dress-up crowd

Amazingly, in fact, few people I wished I could have invited if I'd had contact info, and others I never expected to make it, showed up anyway. Some I hadn't seen in many years, or came from very far away, so that was a nice bonus too. There were family members I've known my whole life, and friends I've had for 10, 20, even close to 30 years. I think I had a chance to say hi to almost everyone. My apologies to the few of you I missed.

Most of them had their pictures taken in the photo booth set up by the awesome Miranda and Reilly of Blue Olive Photography. There are other pictures appearing on Flickr, YouTube, and elsewhere (such as blog posts) with the tag penmachine, with more to come (if you have any from the event, please use that tag yourself). You can also tag pictures and videos with my name on Facebook. We had this slideshow projected on the wall all night too:

I was shocked at how well I survived the evening. I did plan carefully: I took the right combination of medications at the right times, napped in the afternoon, avoided eating too much during the day, and simply ran on endorphins until almost the very end of the evening. During dinner I went upstairs and ate in the hotel room we booked, lying on the bed, to recover some energy. Then, after far more stints on the drums than I thought I'd be able to tolerate, I finally burned out and announced to everyone that I needed to lie down, then disappeared to let them wind things down. I paid for it afterwards, and all the next day, but it was entirely worth it.

Speaking of that announcement, yes, I still had (and have) complete laryngitis. Through the PA system, I rasped out a very few words, sounding like Christian Bale's Batman in The Dark Knight. Out on the loudness of the floor, I was completely inaudible unless I whispered directly into people's ears. I sometimes resorted to typing stuff out on my iPhone for them to read. It was bizarre and frustrating, but somehow appropriate—it was like being a speechless ghost, drifting in the semi-background at my own wake. It also kept anyone from trying to monopolize my time, since I couldn't engage in any serious conversation.

The thank-you brigade

Others made up for it. My wife Air coordinated the evening (and avoided crying, somehow), the guys in the band cracked the usual jokes, and there were four extremely short and touching speeches from those close to me: my friends Tara, Dennis, and Johan, and my (pregnant!) cousin Tarya (MP3 files, between 1 and 4 minutes each). We had tremendous help from my parents Hilkka and Karl (he made the slideshow too), our friend Steven, current and former members of The Neurotics and other bands I've been in, Pat and Craig and Doug from the Odds, the staff at the Waldorf, and our kids Marina and Lolo, who couldn't come because of B.C.'s stupid liquor laws, but who kept themselves and another friend's daughter entertained at home until we got back late.

My biggest thanks, of course, go to Air. It was all her idea, and her work that made my living wake happen. She has kept our family going through my four-plus years of cancer, through surgeries and fear and chemotherapy and a prognosis of death. She made this party happen now, while I could enjoy it and join my friends and family, instead of after I die when I can't. We've been married more than 15 years, and I've said before: that is not nearly enough.

Thank you, too, to all of you guests who could come. I'll remember it my whole life. I hope the rest of you will remember it even longer.

The strong, silent type

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My laryngitis has degraded from Godfather-ish croak, past Gollum-style rasp, into nothing but a voiceless whisper. Yet, despite a visit to the local medical clinic this morning, there's nothing quick I can do about it.

It's not a bacterial infection, so antibiotics would be no use. The doctor herself said she had similar laryngitis for over a week recently, and her only recommendations were to rest my voice, drink lots of fluids ("whatever you like," were her words, though I suspect vodka wouldn't be a good idea), and wait. So, most likely no podcast recording this week, probably no radio interview with Nora Young for CBC's "Spark," and at the party I'm attending later this week, at best a few perfunctory thanks from me through the PA system.

Definitely no singing, not even Tom Waits songs. Perhaps especially not Tom Waits songs.

Over the years, in the throes of enthusiasm about a particular topic of conversation, I've been prone to letting my speaking voice get louder than might be appropriate, sometimes in public places like restaurants. I'm not a believer in karma, but if you are, feel free to consider it applied, however gently, to me in this case.


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UPDATE Feb 28: Off to see the doctor. Still no voice, still a low-grade fever. Need to get the professionals involved.

Somehow, my daughter Marina's iron constitution has protected her, but her sister, mom, and I have all been hit by a low-level flu virus over the past week. Needless to say, in my already weakened state, I got whacked pretty hard. Still, I'm recovering okay.

However, strangely, I've completely lost my voice. I've had that happen before, briefly, for a day or two—sometimes I've even had a cold give me a temporary deep radio-announcer voice. Decades later, I also recall the cruelty with which my elementary-school cohorts and I laughed at our grade 5 science teacher, whose macho male voice was transformed by any chest cold into that of a squeaky cartoon character.

But I've been unable to speak in anything but a raspy Vito Corleone whisper since last Tuesday. I've had to postpone both a podcast recording and a radio interview twice, and I'd planned on giving a little talk at an event later this week; I may remain largely mute instead, although things might improve by then too.

I've always been a chatty guy, so it's bizarre to restrain myself from talking. If the condition persists, I'll have to ask a doctor what to do. I'd like my vocal cords back.

A little less each day

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February 24, 2011Dying from cancer means being a little bit less alive every day. That sounds weird, and it is. But I look back six months, for example, when I was still tromping around the mountains up in Whistler, driving down to Seattle, and taking hundreds of photos of my cousin's wedding—and I couldn't do any of those things now. Yet there's no obvious mark of when each one became out of the question.

I suspect a lot of "last things" are like that: they pass by as every previous one has done, and you don't realize until later that you'll never do them again. I knew long ago that I'd likely never go scuba diving or skiing again, but that was still well after my last dive and ski trip. When I didn't bring my bicycle out of storage last summer, it occurred to me that I'd probably taken my last ride the summer before. Sometimes it is obvious at the time too: it was clear when we visited Disneyland recently that I was unlikely to see California again afterwards.

Beyond that, I've found myself less interested in some of my main hobbies. I'm winding down my involvement with the Inside Home Recording podcast, in part because I'm too ill to keep hosting, but also because recording music at home doesn't interest me much anymore. I haven't released a new tune online in almost two years, in fact. (I think what I really enjoy is playing music live, and I've been unable to perform a full gig since late 2009.) And after accumulating a bunch of cameras and lenses, I'm not taking very many photographs these days either.

It's not that I'm giving up on all the things I like, but that I have to admit when they're no longer enjoyable or physically possible. Sometimes, for instance, my big SLR camera really does feel too heavy to lug around, which it never used to. Still, I never seem to tire of writing, whether on this blog or in little bursts on Twitter and Facebook, or in comments on other people's sites.

Writing is the creative act I've practiced the longest, in fact. I remember enjoying it very early in elementary school. It's why I started this website back in 1997, to promote my nascent freelance writing and editing business. It's what's made me most of my living for my entire adult life.

So I keep doing what I can do, whittling down to the core of both what I like and what I'm still capable of. Facing my own illness and death is clarifying. The less possible or important things burn off, or I let them drift away. What's left is as much of me as I can keep going. A little less, but still me.

Knocked down a peg

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Know what happens when you're already sick and weak and tired from stage 4 cancer, and then you catch a small virus that gives you a minor fever and some aches and pains?

As I discovered on Friday, you get wiped out. I've just been sleeping and sleeping all weekend, between trips to the bathroom and occasional kitchen visits to get a bit of food. I'm ridiculously tired.

I hope this goes away soon. I've hardly spoken to my wife and kids in two days. At least the diet root beer still tastes good.