Penmachine - Derek K. Miller

The last post

2011-05-04T14:51:02Z

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.

Airdrie

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.

I can speak, but in a squeaky way

2011-04-28T05:36:03Z

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.

Jean-Hugues

2011-04-24T04:09:39Z

My friend Jean-Hugues discovered he had the same cancer I do at the same time in 2007, in Paris, France, where he lives. He and his wife Laurence found this blog, and together we made our way through treatment in part by sending messages back and forth online.

But he got better. His treatment worked. He was supposed to visit this past December but was trapped in Europe by snow. Yesterday he finally made it for his first visit to the Pacific coast, staying at the nearby Hilton. I am much weaker now, but strong enough for him to sit at my bedside while we talked (well, I rasped at least).

He has spent these glorious Vancouver spring days traversing the city, and he showed me photos. My wife and kids are pleased he could visit too, visions of future trips to Paris drifting through their imaginations.

Today my mother made Easter dinner for 19 (!) people. She and my dad live next door, so after Jean-Hugues and I spent an hour or so discussing his day, we managed to join the party, and of course he could stay much longer than I could. While his English is excellent, he enjoyed speaking French with my uncle and cousins too.

I can still hear laughing through the duplex wall. I'm amazed JH would take time and spend money to see me, or that everything could come together as it has.

But it is our last chance, because it's my last chance, my last Easter, my final spring.

His flight leaves tomorrow. My father will drive him to the airport. It was brief but well worthwhile.

To vote

2011-04-23T05:53:13Z

Today was one of three days of advance polling for the upcoming Canadian federal election, formally held at the beginning of May. My wife Air urged me to go, so we did.

She drove us down to our local high school gym and it was an easy in and out, slowed mostly by my glacial pace behind my cane. It was also a test to see if I might make it to my ENT specialist Monday, possibly (really, I wonder now?) to have my voice returned to me after weeks of laryngitis. And perhaps I might.

But for now, it was to vote. In our parliamentary system, an election can come almost any time. The advance polls fall somewhat arbitrarily too, this time on Easter weekend. (Don't forget the mail-in ballots as well, if you miss voting in person.) We pick one candidate, to represent us in our riding (i.e. electoral district), and also to represent his or her political party to us. It's very much how things work in Britain, and not at all how they work in the U.S.A.

The leader of the party who wins more ridings than any other becomes the Prime Minister, and effectively heads the country. That can get complicated if his or her party wins more, but not a majority.

It's the way we work it in Canada. Yet I've voted in every municipal, provincial, and federal election I could. My point is, sick as I am, I researched the issues, the candidates, the leaders, and the party platforms on what was important to me. I grabbed some shoes and shuffled to the car, walked into the gym, signed a form, and voted.

If I can drag myself out to vote—and that's not metaphorical, because I did have to fucking drag myself out of the car and up the stairs at times—then you can too. If you're a Canadian citizen, you have the duty, and plenty of chances.

So damn well do it.

Sometimes

2011-04-21T17:36:15Z

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.

The American junk food situation

2011-04-15T19:53:44Z

Now 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

2011-04-14T19:53:02Z

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.

So much for being diaper-free

2011-04-10T16:10:03Z

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.

Bring me Diet Cherry Coke and Easy Cheese!

2011-04-06T20:07:40Z

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:

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:

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

2011-04-02T20:36:14Z

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.

Tsunami video

2011-04-01T06:54:45Z

In case you missed my brief mention a few weeks ago, and its original posting back in 2008, here is a video that three Vancouver Film School students made explaining tsunamis (like the recent one in Japan) in a couple of minutes:

Tsunami Infographic from Shal on Vimeo.

It's based on my 2005 article on the topic.

Worse and better in Japan

2011-03-29T20:39:38Z

When I wrote about the Japanese earthquake and tsunami the day they happened, my post was optimistic, despite the obvious catastrophe. In many ways, things have turned out worse than they first seemed. Surely the situation in Indonesia and around the Indian Ocean was similarly awful at the end of 2004—and took many more lives—but we didn't have access to horrifying footage like this (watch the whole thing) to reinforce the point.

The argument I made, that Japan's position as a modern country with a robust infrastructure and vibrant economy, remains: unlike Haiti especially, Japan will bounce back quickly. Fewer people died or were injured than would have been in poorer and less-prepared nations from a magnitude-9.0 quake and massive sea wave. Those who are homeless and displaced will find safe places to live, and food, and comfort faster than in many parts of the world.

But the dead, officially more than 10,000 people now, are still dead. More than half that number again, over 17,000 people, are missing. Villages, towns, and cities are destroyed, some utterly annihilated.

Distracted from a disaster by a crisis

That enormity should remain our focus, but it is not. Because the cleanup and recovery in Northeast Japan is now an aftermath. And there is an ongoing crisis at the Fukushima Daiichi nuclear power plant. Since it is right on the ocean near the earthquake zone, I remain amazed that it survived the original quake and tsunami as well as it did, but ever since then, it's been hard to figure out what's going on at the facility: initially the situation seemed under control, then not. There were explosions. Things were going well, then poorly, radiation up, then down, in the soil, in the water, in food. Workers evacuated, then returned.

It's unclear to me how much of what has happened at the plant is an inevitable cascading consequence of the initial disaster, and how much has been made worse by insufficient information, poor analysis, bad decision-making, and incompetence. It is clear that news coverage of the nuclear accident, especially here in North America, has been remarkably poor, stoking worries while ignoring facts, and even confusing such basic distinctions as those between radiation and radioactive substances; between different types of radiation (alpha, beta, gamma); or between dosages and exposure rates (which is like forgetting the difference between miles and miles per hour).

Here are a three quick resources that I've found helpful:

XKCD's radiation dose chart and accompanying blog post gives you a sense of the scales of different exposures to radiation. It has some problems, but as a heavily simplified go-to guide, it will help you get your bearings.
Well-known blogger Anil Dash's father-in-law is a health physicist specializing in human radiation exposure, so Anil's post on the topic, while brief, provides some additional sane background on which to base your thinking.
The Christian Science Monitor (always a surprisingly good newspaper, despite how it was founded) has a good article on lessons from Fukushima about nuclear safety more generally.

It's about Japan, not about us

I'd also like to point out a few things for people here on North America's West Coast who are worried about radioisotopes carried here on the wind. Remember Hiroshima and Nagasaki? Those were open-air nuclear detonations in Japan, and didn't affect people here. There were dozens and dozens of atomic-bomb tests in Nevada (many also open-air), practically in our back yards, and while some radiation levels were elevated, the health consequences have been immeasurable. The Hanford Site in Washington isn't even 300 km from my house, and is the most contaminated nuclear waste site in North America.

CT scans, flying in aircraft, and even living at elevation in Colorado yield higher long-term radiation exposure than any of these other things, especially on the other side of the Pacific Ocean. Oh, and no matter what, taking iodine is of no help whatsoever: the radioactive varieties coming from Fukushima have half-lives so short they decay away (in addition to being dispersed) before even getting this far. Want protection from danger? Get a flu shot next year.

I'm neither an advocate for nor an activist against nuclear power. My main concern has always been that we really don't know what to do with spent fuel and other radioactive waste from the process (just as with nuclear weapons production), and we never have. "Just bury it" seems a paltry approach when we're talking about substances that could be dangerous for tens of thousands of years. We're still doing a poor job of burying the waste of just 65 years of nuclear production.

But we have an industry here and now, and it has its consequences. Let's at least try to understand and handle those rationally, and help Japan work with them, because hysteria won't make it any easier.

And remember the quake and the tsunami, and the 27,000 dead or still missing.

Twenty years on

2011-03-27T00:33:16Z

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.

Better when busy

2011-03-25T02:50:48Z

It was shockingly quiet here in the house all week, just me and Lucy the dog. I hardly went out, since I was pretty ill most of the time. My parents dropped by to check on me, walk the dog, and drop off food from time to time. But I spent the week—largely feeling content and by my own choice—mostly alone.

This afternoon my wife and two daughters returned from Victoria, where she had been attending a conference, pulling up in the car close to 3 p.m.

The transformation was instantaneous. Kids arguing, laundry flying, puppy barking, snacks inhaled, sudden clutter making magical appearances here and there. Air and I exchanged a few glances: she'd been dealing with this type of chaos by herself for six days and nights.

I had woken up mysteriously early this morning, and Air was tired after an early morning and the drive and ferry, so we crashed out for a nap while the kids played and watched TV. Despite the continued noise (even Lucy decided to chomp on a squeaky toy while lying between us), I had a smile on my face. It's better when the house is full.

I'm sure I'll tire of the hullabaloo soon enough, but not today.

The usual whisper

2011-03-24T03:45:25Z

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."