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Derek - The Last Post

Derek Apr 2011

April 2011 Archives

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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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

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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.


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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.

Derek Mar 2011

March 2011 Archives

Tsunami video

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

Worse and better in Japan

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West Moat (Explored)  6,000 visits to this photo. Thank you.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:
  1. 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.
  2. 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.
  3. 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

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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.

Better when busy

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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

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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.

Adele – “Someone Like You” live video + download free mp3Last night, at bedtime, I put the new Adele album 21 in my headphones and settled down to sleep. Within three songs, I was crying hot tears, my face scrunched up so I couldn't see. I couldn't stop. I didn't want to. I sobbed silently through nine more tracks and 40 minutes in the dark (weeping with laryngitis is one more weird experience), enough that I was worried I'd short out one of the earbuds.
Music, that most human of instincts and inventions, can do that at its very best: reach past our rational minds, through any analysis or cynicism, beyond any physical pain or discomfort, directly to our emotions. Then it can draw those feelings out and tap them to the surface, even (especially?) when we didn't know just what was in there. I've had it happen: listening to the astounding student choir in the auditorium at the high school where my wife works, hearing Stevie Ray Vaughan play "Little Wing" by Jimi Hendrix, a few transcendent moments onstage with my own band in front of crowds big or small.
But Adele's "furious tornado of a voice" (as Pitchfork's Tom Breihan called it) pierces me. She's half my age, British, and likes to hit the pub with her friends, but that voice and the conviction behind it are why she's also a number-one selling artist in countries around the world right now. She's the queen of heartbreak. Every time she comes on with little but piano as backing, like on "Turning Tables" or "Someone Like You," and "Hometown Glory" or Bob Dylan's "Make You Feel My Love" from her previous collection, 19, I completely lose it...
Hang on. Have to take a break here for a second...


Sheesh. It's like I'm a mopey '80s teen wallowing in my room to Robert Smith and Morrissey (and, back then, I wasn't). The funny thing is, Adele has a Cure cover on the album ("Lovesong"), and while it's very good indeed, it doesn't have the desperate edge of the original. I don't know whether it's the riff, or the way Smith sang "I will always love you" in 1989, but he made it clear that the love wasn't coming back, and maybe never got there to start with.
Adele's own songs often do accomplish that, in spades. Let's take one. At the end of her staggering BRIT Awards version of "Someone Like You" (the live recording went straight to #1 on the British charts), the announcer says something like, "You don't need dancers and pyro and lasers, do you?" Basically he's telling all the other acts at the awards, from Rihanna to Arcade Fire, "This girl can kick your ass any day of the week." And he's right. I'm sure she knows it, but whenever I've seen her end a song, she appears like she has to shake it off a bit, then she looks off to the side slightly, as if thinking, "Was that me?"
But there's a more subtle part of the performance that's worth examining. Here are the lyrics for the chorus:
Never mind, I'll find someone like you,
I wish nothing but the best for you, too,
Don't forget me, I beg,
I remember you said,
Sometimes it lasts in love,
But sometimes it hurts instead.
At the BRIT Awards and at every other live performance I've heard of that song, Adele sings the first four lines in the same, strong, high part of her vocal range, then pulls it down a little for the last two. It works great.

The moment

But listen to the version on the album. I think it's slightly too fast, but here's what I guess happened: producer Dan Wilson asked Adele to try something different in the chorus, to sing the third line ("Don't forget me, I beg...") higher than her normal range, where it almost cracks. It's not an unusual technique for even great singers to try straining on purpose, maybe creating some of the finest moments in popular music. (Think of John Lennon on the Beatles' "Twist and Shout," Roger Daltrey on the Who's "Won't Get Fooled Again," or the entire careers of James Brown, Janis Joplin, and AC/DC.)
For Adele, that moment, right there, the one line—"Don't forget me, I beg"—is the focus of the song, the crux of the album, the very keen point of the ice pick when it first hits the diamond and shatters it, the moment of heartbreak.
And here's why it, and the rest of Adele's songs, made me cry like that last night. There's the heartbreak of rejection, of unrequited love. There's the heartbreak of breaking up, of losing love. There's the heartbreak of getting dumped, of not being loved anymore. They ache, they seethe, they're horrible. That's what Adele makes her business singing about.
But worst of all is the heartbreak of having been in love, for years, and both of you still being in love. But one of you is going to die. And no one, neither of you, not anyone else, can do anything about it.
That's not what Adele is singing about, not directly. I hope she never knows how it feels, or if she does, that it's many, many years away. I didn't invite her voice there, but it seems to know, so when it breaks down my barriers and taps the depths, that's where it goes, and what comes out.

Orca, Haida Gwaii, British Columbia CanadaCatching up on some Quirks and Quarks podcasts last night, I came across an amazing discovery about orcas (a.k.a. killer whales). Scroll down to "A Killer Diet" on this page to listen.
Here's the research paper and a summary from the Vancouver Aquarium. Essentially, a group of transient orcas near Unimak Island in the Aleutians hunt gray whales each spring, usually separating a juvenile gray whale from its mother, then killing and eating it.
For killer whales, that's not especially unusual: many of their populations around the world hunt other whales much larger than they are (even blue whales), using clever pack behaviour, often in the open ocean. But the problem is that most whale carcasses sink after they die, so the orcas can only get to some of the blubbery whale goodness before it disappears into the abyssal depths. (Interesting stuff can happen after that too, but we're on a different story.)
The Unimak orcas have taken advantage of gray whales' defensive behaviour, which is to retreat to shallow water. Separating the juvenile prey from its adult defenders in the relative shallows (10 to 20 m) has allowed the orcas to invent a refrigerator for themselves. Because even a juvenile grey whale provides too much meat for a pack of killer whales to eat all at once.
So the orcas eat, then let their prey sink. But the rocky bottom is right there, and a day or so later, they come back to dive down for leftovers. And again, and again, for nearly a week—like a human fridge after Thanksgiving. (It's Alaska just after winter, so the water is nice and cold too.) In the meantime, other sea creatures—including sharks, as well as invertebrates—chomp and grind away at the remains. Even local bears get in on the action, salvaging bits that float ashore.
This all shows why killer whales are among the most flexible, ingenious, and successful large predators in the world. While they're most common in temperate oceans near shore, orcas range throughout the world's marine surface ecosystems, from the Arctic to the Antarctic, from the Mediterranean to tropical seas. They are the top predator in all those places: nothing else eats them. In those different habitats, they often have specialized diets, hunted with customized techniques learned, and then passed from generation to generation.
We have the Unimak gray whale fridge. Resident populations near my home in British Columbia eat salmon; some people think the whales stun the fish by focusing their vocalizations through the melons at the fronts of their heads. Transient pods here eat marine mammals instead, mostly seals and sea lions, sometimes tossing them in the air during pursuit. But in one spot in South America, the killer whales ride the surf, emerging from the foam to snatch sea lions right off the beach. Off Norway, orcas trap schools of herring in rings of bubbles. Near San Francisco, scientists recorded orcas hunting a great white shark by flipping it on its back, which immobilized the fish and eventually killed it.
I suspect that no other type of carnivore has such a diversity of hunting behaviour. That's probably because they are mammals (the largest variety of dolphin) like us, with big brains—which they obviously use very effectively. Most predator species, whether on land or in the ocean, have common hunting behaviours, and often highly specialized bodies to accommodate them. But killer whales have evolved—as a species—to be generalists. They are smart, they can improvise, they can plan, and they learn. They teach each other what works and how to do it, and pass the knowledge down through families. You might even say they have culture.

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.

Tsunami comes inRight after the Indian Ocean earthquake and tsunami at the end of 2004, I wrote what turned into a long article about it, and about tsunamis more generally. People found the piece useful, so following today's devastating 8.9-magnitude quake and tsunamis in Japan, I thought I'd point it out again, particularly my general introduction and the Q&A section later on.
Today's situation is different, of course. Damaging tsunamis seem to have been largely restricted to the coastline of Japan itself; Hawaii and the rest of us around the Pacific Rim saw comparatively minimal effects (the wide-open coasts of southern Oregon and northern California seemed to get the worst of it), if any. And Japan has probably the world's most sophisticated earthquake and tsunami response system, as well as the most stringent seismic building codes. Many hundreds (perhaps thousands) of people died in Japan today, and there will be vast costs in rebuilding—but in 2004 the death toll around the Indian Ocean was over 230,000. Last year's Haiti quake, of far lower magnitude, killed hundreds of thousands too.
As a measure of how much modernization has changed things, as recently as 1923 over 100,000 died in the Kanto quake, which was not nearly as strong, but also generated tsunamis. Remember that when people (as they inevitably will) start talking about the relatively low death toll from today's events as "a miracle": it was only a miracle comprising knowledge, understanding of history and plate tectonics, planning, engineering, construction, communications, discipline, and other sorts of hard human work.
The low cost in lives and injuries does not, however, diminish the pain and suffering encompassed in each of those lives. It does not make it easier to witness one's house or office destroyed. It does not clean debris from a formerly vibrant seashore, or put out a raging fire, or comfort an orphan.
It does tell us one thing. We have another reason, among many, to diminish poverty in the world. Because when a natural disaster strikes—indifferent, in itself, to the wealth of its victims—those who are poor are least prepared to face it, and more likely to find themselves under the rubble than figuring out what to do once it's cleared away.

New Starbucks logoI found today one of mixed messages. Over the course of a few minutes' watching the news on TV this morning, I saw this:
  • Today marks 100 years of International Women's Day, focusing on reducing inequality and oppression. Much has changed for the better in a century, but there remains a long way to go, especially outside the Western world. In Canada, there are several hundreds events underway.
  • But today is also Mardis Gras in New Orleans, where men toss cheap bead necklaces to encourage women to show their breasts.
  • And Starbucks Coffee celebrates its 40th anniversary today by unveiling what I think is a fairly spiffy new logo. Yet at the celebration event in Seattle, Starbucks CEO Howard Schultz was surrounded by a bunch of male executives dressed (like him) in suits, then a bunch of baristas (mostly female) in aprons.
Yes, some way to go.

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.


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All I can say is wow. And no, it's not Photoshopped:
Star trails and bioluminescence by Phil Hart, Australia
The light in the water is bioluminescence.

A decade of March firsts

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It's March 1, and spring approaches. What was I thinking about in the previous 10 years on this date? Since my blog is now old enough, we can find out:
It's unlikely I'll live until March 1 next year, so that list should now be complete.