Derek K. Miller - Penmachine words music comment - Vancouver, Canada

You already heard the full-length unedited version of my interview with Nora Young (pictured) of CBC Radio's "Spark." Now here's the edited version in the latest complete episode of the show, with extra bonus material including me reading some of my blog posts, and my podsafe tune "Striking Silver" as background music.

You can download the whole episode as an MP3 file, or if you're subscribed to the Spark podcast, you'll get it automatically. If you prefer to hear "Spark" on the radio, it airs Wednesday, April 30 (tomorrow) at 11:30 a.m. and Saturday, May 3 at 4:00 p.m. (a half hour later in Newfoundland, of course), on CBC's Radio One network, which is 690 AM in Vancouver. This episode also features internetfamous blogebrities such as Merlin Mann and Amber Mac.

Finally, if you have any doubt at all that "Spark" is a cool show, they just received a promo message recorded by freakin' Strong Bad! How awesome is that? (MP3 also available.)

Labels: cbc, ego, podcast, radio

As part of my slightly twisted effort to use my cancer treatment as leverage to get me the kind of exposure and fame my more modest general talents haven't done, I was interviewed on Wednesday for the show "Spark" on CBC Radio (as I've already flogged).

You can now hear the full-length talk between me and the always sultry-voiced Nora Young—a voice made even huskier by her fighting a cold at the time. Here's a direct link to the MP3 file (24 minutes, about 33 MB) too. I'll probably link that up at my podcast after the edited version goes to air next week.

I like that "Spark" doesn't have the traditional media attitude of holding on to its source material like a state secret. It's unusual enough for a radio or TV program, publicly funded or not, to post full-length versions of edited interviews online. But to do it days before the final version appears is still more innovative. I'm not sure I'd even do that.

Labels: cbc, ego, podcast, radio

Now that I'm going to be on the radio, again, "Spark" host Nora Young has asked me to pick a couple of my blog posts that I can read out (at least an excerpt, if it's a longer entry) on air—one related to my cancer treatment, one not. I just did a quick skim through and found a few candidates.

If you have a bit of time, take a look and tell me in the comments which of each type you think might sound good on the radio:

Cancer posts

• Dead man walking
• Know your limit
• Bandages and partners
• Needle boy
• Braveblogging
• My least favourite part of town

Non-cancer posts

• "Crouching Tiger" would have made a better "Star Wars"
• Buying my dad a lens
• How a rotary phone is better than a cell
• Meeting up with the geeks
• My first toolbox
• Getting a good baby passport photo
• My daughter's cool glasses
• Can you make money from blogging and podcasting?

And of course, if you prefer something else I've written, let me know. Thanks!

Labels: blog, cancer, cbc, ego, geekery, radio

CBC Radio has two programs (also available as podcasts) that confuse me a little: "Spark" and "Search Engine." I like them both, but they seem to cover a lot of the same territory of life in the digital age. Sometimes I can't remember which one had a particular segment—was it host Nora Young at "Spark" who interviewed the guy who edits Hillary Clinton's Wikipedia entry? No, it was host Jesse Brown from "Search Engine."

I suppose it doesn't matter. I'm glad there's enough of an audience for my kind of techie social nerdity that CBC has two shows about it. Yay again to Tod for helping the network get on the podcasting train after jump-starting it with the CBC Unplugged show almost three years ago.

Anyway, I'm going to call "Spark" my favourite of the two shows now, because it looks like I'm going to be on it. Nora—that's her on the bike—indirectly heard about my recent talk on life, death, and my blog, and contacted me through Facebook (appropriately enough) to see if I might like to be on "Spark."

One of my weaknesses is appearing in the media. I've always loved seeing my name in print, or being on the radio or TV. So my immediate thought was, "hell yeah!" We'll likely record something next week for the "Spark" episode airing (and podcasting) at the end of the month. More details to follow.

Incidentally, Nora's other podcast, The Sniffer (not affiliated with the CBC), has been on my subscription list for a couple of years now. I recommend it.

Labels: blog, cancer, cbc, ego, facebook, geekery, podcast, radio

I thought that yesterday's chemo treatment (which continues, with a bottle I'm hooked up to right now at home, till tomorrow) would be my second last for now. But it won't be. My oncologist Dr. Kennecke recommended yesterday that I take at least four more treatments, totaling 16 since I started in October, then perhaps move on to a different mix of drugs.

That's disappointing, though not a complete surprise. As I mentioned, my last CT scan was good, in that the blood clot in my lung is gone and the small metastatic tumours there have not grown. But that's the thing: the chemo is keeping them at bay. Taking a break as I was hoping to—in order to recover a little and have the surgery that can reconnect my intestines together (so I can poo normally, rather than into a bag glued to the side of my belly)—might risk letting the cancer grow.

And, reasonably enough, I don't want that.

So I've had to readjust my thoughts for this year. When will I be able to start work again, even part-time and from home? I don't know. Will we travel as a family this summer? Likely, but probably not far. Will the chemo keep working, and maybe shrink the tumours eventually? I sure the hell hope so.

I had hoped that the limbo I've been living in during the last five months of chemo—a somewhat sisyphean routine of three days of crappy, foul, vile side effects interrupting two weeks of feeling relatively normal while my hair thins and goes rapidly grey, my fingers get strangely discoloured and dry, and I see pink whenever I blow my nose—might change soon. But no, and I'm okay with that. Just okay.

If my hair gets any scragglier and thinner, I'm seriously considering shaving my head to match my co-host Paul (whose baldness comes more naturally). Fortunately, I've returned to essentially the same weight I was before this whole mess started at the beginning of 2007 (about 90 kg, or 200 pounds), so if I do that I shouldn't look too much like a cancer patient, especially since I still have my big bushy eyebrows.

More positively, my doctor also said I should start exercising regularly again: there's no hazard from my lungs, which seem to be functioning properly, and I've regained most of my strength since my worst state in the summer. I may even ride my bike around Central Park here in Burnaby soon, more than a year and a half since I last took it out. Those tires will need pumping.

So on we go, still alive. On on on.

Labels: age, cancer, chemotherapy, ego, paulgaray, surgery

For a nerd, I'm surprisingly uninterested in puzzles and games. I have rarely played cards, was never into Dungeons and Dragons (didn't even read Tolkien, for that matter), don't generally do crosswords or Sudoku, get little enjoyment from jigsaw puzzles, don't enjoy chess, and never went in for those mind-bender style mathematical games from Martin Gardner and Douglas Hofstadter in my dad's Scientific American magazines. My wife taught me my first poker skills just a couple of weeks ago.

Yes, I own some M.C. Escher prints, and I was part of a regular weekly Mah-jongg game (not for money) for several years. My brain does tend to hew to stereotypically geeky pursuits. I have a science degree. I used to read a lot of science fiction, am fascinated by gadgets, have always preferred non-fiction to fiction in my reading otherwise, loved Star Wars and 2001 and Alien, was a young computer nerd (duh), and so on.

I understand why people like games and puzzles; I'm just not one of them. (Similarly, I understand the appeal of practical jokes, but personally dislike most varieties and rarely find them funny.)

But I like solving problems, if they're real ones. Getting all the gear from my band to fit just so into the car, tweaking web page code so it validates, editing audio transitions in a podcast, making a poster, taking effective photographs, or editing some writing—these are things I enjoy. They are puzzles and games too, but the kind that exist to accomplish something, not for their own sake. Maybe related, I discovered early on that I'm not really suited to computer programming, even though that is problem-solving that is practical.

I'm not sure what all that says about me, or whether that question is a puzzle worth solving. It's interesting, though.

Labels: ego, games, geekery, science

These are my first new glasses since 2004. Not too much different, but I like 'em (actually, I was looking at a much weirder blue pair, but both my wife and I agreed these were better). And the soul patch is gone now too:

Labels: ego, family, glasses

Today's the one year anniversary of the day I first heard my cancer diagnosis. Back then I thought that, even though it was cancer, it was likely early stage and relatively easy to treat.

That was wrong, as I discovered quickly. While today marks one year since my diagnosis, I started counting my treatment last January 31, which means I'm at something like Day 341 now, and far from completing even this round of chemo and other drugs. Whew. I thought I might be away from work for two months—it's now been eleven.

Still, the news has recently been encouraging, since my metastatic lung tumours seem to be responding reasonably to my current chemotherapy. My doctors and my efforts to look at my cancer both optimistically and pragmatically, as well as amazing support from my wife and kids and others in my life, have kept me alive for a year.

Even though I've received gifts of lots of very fine scotch whisky this year, right now I can't drink any alcohol without feeling like crap, so that stuff will have to keep.

Labels: anniversary, cancer, chemotherapy, ego, surgery

I got my haircut yesterday in the midst of my cancer rollercoaster, so I was away from home all day. My daughters stayed at my parents the whole time, and when I got home, my oldest said, "Daddy, did you lose all your hair in one day?!"

I told her no, it wasn't from chemotherapy. I just got a haircut. But I have noticed that there is now a band of grey hair across the back of my head, from temple to temple, that wasn't there last time I got a short haircut a few months ago:

Labels: age, cancer, chemotherapy, ego, family

I received an email today from someone who has both had cancer and been a close relative of someone who died from it. She reinforced, like others did, that being the relative was much more difficult.

Almost every day, my mom tells me of emails or letters or phone calls from people—some of whom I know, some of whom I've never met or hardly even know about—wishing me well and offering sympathy and support and whatever help they can. My parents and my in-laws, my aunts and uncles, my cousins, parents of my children's friends, and most of all my kids and my wife—all have done that and more.

My relatives and friends probably need as much support as, or more than, I do, because much of the time they feel there is little they can do. They send me suggestions, and help me when I feel bad, and pick up the huge amount of slack I'm leaving when I'm sleepy or sick. But they can't cure the cancer, can't even fight it the way I have to. They are spectators, and that must be hard.

So cheers to all of you. I don't often thank you the way I should, but I think you might understand why I'm a little distracted most of the time.

Labels: cancer, chemotherapy, ego, family, friends, pain, surgery

Duane Storey takes lovely photos, and now has a blog that showcases many of them. He's also offered free prints to people like me who blog about it, so that's what I'm doing. Go check him out!

UPDATE: Yay! I was early enough. Here's the photo I picked. Beautiful. Thanks Duane.

Labels: ego, geekery, photography, vancouver

Hey, Scott Rosenberg mentioned me in an article in The Guardian (thanks to Suze for finding it) today. Thanks Scott.

I met with my oncologist Dr. Kennecke today, and it looks like I will start more chemotherapy in a little over a month. Oddly, I'm looking forward to that.

Labels: cancer, chemotherapy, ego, geekery, web

This is kinda fun, reminiscent of Heromachine from years ago. You can make your own:

And like Heromachine, Alistair pointed me to it.

Labels: cartoon, ego, friends, simpsons

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

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

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

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

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

Here is me circa 1974:

Here is me last month:

Thanks to my aunt and uncle for the top photo.

Labels: ego, guitar, labwithleo, music, photography, retro

Speaking of seeking attention, I'll be making my third appearance on CBC Radio's On the Coast afternoon drivetime AM radio show tomorrow (Friday) afternoon after the 5 p.m. news.

If you happen to listen to it on the radio (AM 690 in Vancouver) or via the live online stream, available in high bandwidth (direct file link) or low bandwidth (direct file link) (Windows Media format), and if you get a chance to record it, I'd appreciate a copy. I'm on the air almost as much as Tod these days, although of course he gets paid for it.

My wife will also be joining me on the show for the first time. We'll be talking about my cancer and how the news has just kept getting worse, but I continue to blog about it. Listen in if you can.

Labels: cancer, cbc, ego, family, radio, todmaffin

I've always been a ham, a sucker for attention, someone who wanted his share of fame, and not necessarily fortune. It's a big reason I blog here, and play in a band, give away my music, co-host a podcast, and other such hammy activities.

So I've found some of the attention I seek online over the years, and I've always done some work to stoke that. But just as I wrote that cancer is a lousy way to lose weight, I really wish it wasn't what generated close to 80 comments on my "Dead Man Walking?" post (note the question mark!), and also got me both Scoblezied and called "a leading citizen of Vancouver’s technology scene" by none other than XML co-inventor Tim Bray today.

But hey, I'll take what I can get! Thanks everyone. I have friends in places I didn't even know.

Labels: cancer, ego, friends, robertscoble, timbray

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

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

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

Labels: cancer, ego, family, surgery, travel

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

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

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

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

Labels: cancer, ego, radiation, surgery

No video yet, but here are some photos of my appearance with my co-host Paul Garay on The Lab With Leo yesterday, taken by Sean Carruthers of the show's staff:

Paul had better be careful with those heavy metal hand signs—then again, I guess they were appropriate in this case. And yup, that's my new guitar.

Labels: ego, guitar, ihr, insidehomerecording, labwithleo, leolaporte, megancole, paulgaray, podcast, tv, video

I caved. I am a weak, weak man.

And it was getting to be more work explaining why I wasn't on Facebook than it would be just to join.

So there. Happy now?

Labels: ego, facebook, geekery

I'd just like to say that I really, really like the electric heating pad I received as a family gift a few months ago. And that I miss my wife and daughters, who are at Girl Guide camp all weekend.

It's a little lonely here. I've taken the time to read, and have dinner with my parents, and take the car for an oil change, and sleep.

Labels: cancer, ego, family, girlguides

My wife reports to me that there are now nearly 50 people on the Facebook group called "Derek K. Miller Should Join Facebook." So far I'm not caving, but I may very well eventually. After all, I gave in on Flickr in time, so there is some precedent.

But that took almost a year, and it's only been a couple of months since the Facebook pestering began. You might have to wait a bit yet.

Now, to distract you: look over there! Chinese writing may have originated as long as 8000 years ago! Neato!

Labels: archaeology, china, ego, facebook, friends, geekery, language

"Somewhere near the middle of your T-shirt drawer," writes Adam Rosen in Gelf magazine (via Kottke), "lies dormant a secret weapon so witty, so elusively allusive, or just so damn hip it finds itself swathing your chest on only the most important occasions."

Here's mine. Hey, it got me labeled "hipster" two years ago by people who had no idea who I was at the time. Score!

(Thanks to Bill D. for buying it for me. The orange ones are now collector's items.)

Labels: clothing, ego, humour, northernvoice

Last week I mentioned that I'm not using Facebook yet, and why. My wife does use it, and likes it. So CBC technology columnist Tod Maffin interviewed both of us about it. You can listen to his mini-documentary (MP3 file) as part of his Todbits podcast, or you might have heard it on CBC radio today.

I have to say that the peer pressure for me to get on Facebook is certainly an order of magnitude stronger than it has been for other social networking sites (except maybe, briefly, Twitter)—but I'm still holding out. I'm busy enough now as it is.

Labels: cbc, ego, facebook, radio, todmaffin

As I mentioned before, I've lost close to 20 pounds during cancer treatment. But it hasn't happened as I expected. I haven't suffered any nausea to speak of, and I still have all my hair.

What I don't have is some of my butt. Whether because of the radiation treatments, the chemotherapy, or just my body's general pattern of weight loss, I'm lacking a lot of, er, padding down there.

It's actually uncomfortable to sit down for long periods, especially in bed. My tailbone and surrounding spine and the back of my pelvis start hurting.

My wife noticed it particularly today—the gluteus loss has been gradual, but now it's quite obvious. And tomorrow, after a week's break as part of the schedule for my clinical trial, I go back on the chemo cocktail for the final two weeks.

So, even more bony butt, here I come.

Labels: cancer, chemotherapy, ego, family, radiation