Penmachine

It's a day earlier than I expected, but I'm finally home from St. Paul's Hospital once more, after spending almost all of July there. I am tired and incredibly weak, but I plan to improve now, and not go back to the hospital again for a long time.

Labels: cancer, hospital, ileostomy, morphine, pain, surgery

It's been well over a week since my last post, where I was complaining about morphine withdrawal. Well, it turned out to be rather more than that—yes, there were those shakes and chills and sweats, but it turned out that I also had a partial bowel blockage.

So I checked myself back into St. Paul's Hospital on Wednesday, July 18, and have been here ever since. It looks like things are finally stabilizing: I no longer have a tube up my nose, I'm starting to manage my own blood glucose again, and the medical crew needs to get my potassium levels under control, but the key thing is fatigue. I'm very weak, since I only started solid food again two days ago, and I'm now down to 148 pounds, another 12 pounds less than my last record low, and a full 52 pounds less than my normal weight.

Anyway, while the computer lab here at the hospital is fun, this is the first time I've felt up to coming here. If you want to get regular updates on how I'm doing, check my dad's blog at penmachinedad.blogspot.com if you haven't already. He has something new every day.

My family (especially my wife and parents) and friends have been unbelievably great, as have the hospital staff. My friend Simon is also in the same hospital, five floors down, following heart surgery, so we're continuing to be PKBF (painkiller buddies forever), although now the painkillers consist mostly of Tylenol and coffee. He's using the computer next to this one right now.

I may go home as soon as Monday, but we'll see. In any case, I'll be back soon enough. Thanks for continuing to check in.

Labels: cancer, family, friends, hospital, ileostomy, morphine, pain, surgery

Feverless chills, shivers, and sweats. Mild nausea, twitches, abdominal pain, amazing fatigue. It's hard to eat much, but I'm keeping it down. I've moved into our adjustable hospital-style bed and propped my head up. Every two days, I reduce the morphine dose that I take every four hours. I have to ride it out, ride it out, and I will.

Labels: cancer, morphine, pain

My wife and I have always had a good relationship, and not just in the stereotypical sense. We're lovers and partners and parents together, of course, but we're also pals, best friends. And while the past year has Sucked in a Big Way so far, it has also, in some ways, forged our bond even more strongly.

First of all, last year, before my cancer diagnosis, my wife made a rather sudden and delightful transition from putting up with my web-nerd geekiness (in a wifely way) to becoming a web geek herself. She started her own podcast, and then took off into realms I haven't touched, including helping to organize tech conferences, going whole-hog with Second Life and Twitter, and finally pulling me, heels dragging, into Facebook. I hope I've been able to make finding her inner computer nerd a little easier.

Going the other way, she's proved incredibly supportive during my cancer treatment, and I hope that in going through this awful experience, I have also come to be able to conceptualize some of the shit she's gone through in her own life. I don't know if a man will ever know what childbirth feels like, for instance, but I now know how a perforated bowel and blocked kidney feel, as well as a not-quite-effective epidural anaesthetic. And that's just the start of it.

There are a lot of times now, good and bad, amazing and heartbreaking, when she and I can simply give one another a look, and understand. Not always, of course, but I feel closer to her now than I ever have.

In a way this is all background for what might seem like a shocking thing for her to do less than two days after I left hospital following major cancer surgery: she's flown out of town with three girlfriends for a party week in Las Vegas.

"B-b-but she's supposed to be taking care of you!" I imagine the traditionalists might sputter. "How could she possibly leave town? For Vegas?!"

And that's why I wanted all the explanation up there. Because she booked this trip a few weeks ago, when my surgery date was still in flux, so we knew full well that I might end up in some sort of treatment hellhole just as her ticket dates came up. But in 2007 so far we've already been through so many canceled trips and sidetracked fun times and so much crap. We talked and talked about it, and of course she should go. Even if I were still in hospital, she should go. Not cancel another trip, but take that trip, dammit.

As it turns out, my parents (who live next door) can take care of anything I need—including our daughters, until the in-laws pick the girls up on Tuesday—and I'm genuinely feeling better than I have for months and months. I mean, I was cracking jokes while being wheeled from Recovery to my ward, more then nine days ago. I've had a few setbacks in between, but I'm feeling emotionally great, if physically drained.

So I want my wife to spend this, my first week at home where I'm mostly just snoozing and shuffling around slowly anyway, to have a big blast of a good time on the Strip, partying at night and hanging out at the MGM Grand drinking huge poolside beverages during the day. I can't go right now, so I want her and her friends to have enough fun for both of us.

I think that having her do that while I get better here is a pretty accurate measure of how good we are for one another. It's realistic, it's fun, and it feels good for everybody. And, more important, neither of us gives a damn if somebody else thinks we're wrong about that.

Labels: cancer, family, lasvegas, love, travel

I'm now fully ensconced here at home on our fantastic recliner couches, with food and drink and excellent "nurse" and "secretary" service from my daughters (who were alternating those jobs in 15-minute shifts until it turned into a fight). Plus the real work in sweet care from my wife too, of course.

I finally weighed myself this morning. As I noted some weeks ago, I had lost about 25 pounds (11 kg) between Christmas and my recent surgery, which was drastic enough. As of today, with a week of not eating at all or hardly eating in the hospital, I have dropped another 15 pounds—or 40 pounds (18 kg) total.

So I've hit a new adult weight low of 160 pounds (73 kg), fully 20% lighter than I was seven months ago.

Time to start getting it back. More Cheesies, please!

Labels: cancer, family, ileostomy, surgery

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

Labels: cancer, colostomy, hospital, ileostomy, moleskine, surgery, vancouver

Labels: cancer, colostomy, hospital, ileostomy, surgery, vancouver, video

Tomorrow by this time I'll be at St. Paul's Hospital recovering from my major cancer surgery. My rectum and a chunk of my lower colon will be gone. Depending on how things go, it's also possible that my left kidney will be removed as well, if the surgeons can't reconnect the ureter after removing my tumour. I will either have a temporary ileostomy to let the doctors later hook up my plumbing again, or if that's not feasible, a permanent colostomy. No one knows yet.

Yeah, okay, that freaks me out. But I'm ready, I think.

It's been a strange couple of days. Yesterday my wife and I met with the urologist and the pre-surgical team and went through all the details. By the end of it I was aching and tired, and slept and slept and slept. Today I'm on an all-liquid diet to prepare (Jello is as solid as it gets), and even though I haven't taken my sodium phosphate solution yet, my intestines are purging out in anticipation anyway.

I'll be in the hospital at least ten days. I won't be blogging or Facebooking or reading email. My wife may post some stuff here, and my dad has started a blog that will include updates. See you in mid-July sometime.

Labels: cancer, facebook, family, 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

One of the complaints that many people have made about the Apple iPhone is that the headphone jack, while a standard size, is so deeply recessed into the case that nothing but the extra-thin Apple headphone cable will actually fit.

That was also true of the weather-resistant Sport Case for the original, stick-of-gum iPod Shuffle, but that case came with a nice little adapter cable, of which we have a couple kicking around the house. I use them for the extra-chunky end of my big Sennheiser HD280 Pro headphones.

So, rather than shelling out a lot of money for third-party headphone adapters, I'd recommend that you hunt around for a discounted Sport Case, whose adapter looks more elegant and might end up being quite a bit cheaper.

Labels: apple, headphones, iphone, ipod

The other day in the car, my wife asked me if there were any places in the world I'd still like to visit. While yes, there are—it would be nice to see Paris, or New Zealand, or Istanbul—the question got me thinking more about my favourite places, the ones I've already been to where I'd like to return.

The ones that leaped to mind were all relatively close by, beautiful places in our Pacific Northwest neighbourhood of "Cascadia," wild places with water and evergreen trees, and each one reminds me of the people I shared them with:

1. Crater Lake, Oregon, for my parents - I stayed at the rimside lodge at Crater Lake National Park several times with my parents when I was a kid, starting in 1976. The last time I was there was a day visit in 1993. I still want to go back, to see the bluest water I've ever encountered (yes, it's really that colour), the darkest and most star-filled night skies I've ever seen, and the clear evidence of our volcanic part of the world—the lake formed a few thousand years ago when the former Mount Mazama erupted so violently that it collapsed in on itself, and the resulting caldera filled with rain and snowmelt.
   
   
2. Schooner Cove, Long Beach, B.C., for my friends - In the late '80s and the early '90s, my nerd friends and I (sometimes several dozen of us) made an annual car trip across Georgia Straight and the spine of Vancouver Island to Pacific Rim National Park, more specifically to the beachside campground at Schooner Cove south of Tofino. It took a bit of a hike through primeval rainforest and a slog along the sand to get there, which was part of the fun. We pitched tents and drank and sang around the fire over the May or July long weekend. Once we picked a bad spot and nearly got flooded out by high tide in the middle of the night, so we were smarter in subsequent years. Another time, a juvenile elephant seal was molting on the beach right near camp, and pretty much ignored us even when we were mere feet away. The beach is closed to camping now, which makes the memories even better.
   
   
3. Cannon Beach, Oregon, for my wife and daughters - I'd never been to Cannon Beach before my wife took me there in 1997, when she was pregnant for the first time. We've gone back several times since with both our daughters, in 2000, 2004, 2005, and 2006. It's an expensive tourist town in a spectacular location, which is one reason we like it so much: we can stay in a top-flight resort hotel steps away from the sand, and return from roasting marshmallows at sunset to a room with two bathtubs and a full kitchen. (As our fridge magnet says, "I love not camping.") We have had tremendous fun there each time, and I'm sad that my cancer treatment means we can't go back this summer, even though we were getting a little tired of it by last year.

Don't get me wrong. I love deserts and the tropics and mountains and other places too, but these three spots mean the most to me. So, inevitably, as we talked about them, the question came up: what if I don't make it back there? I do have metastatic cancer, after all, and there is even a small but non-trivial chance that I could die in surgery this week, something that's always a risk with an operation.

Here's what I told my wife. If I die, donate anything donatable: any organs or other parts, corneas, hair, whatever is useful to someone. If the rest of my body can be used to train medical students or get turned into a classroom skeleton or something, great, do that too. If there's anything left that no one can make use of, cremate that. Have a party, but not any kind of religious or spiritual ceremony—I don't believe in any of that stuff, so please don't pretend I did. If you can get together a band, have them play some fun songs, plus "Four Seasons in One Day" by Crowded House.

Then, when all that's done, split up the batch of my ashes and take them to Crater Lake, and Schooner Cove, and Cannon Beach, and put them in the water. Then enjoy those places as I did.

Labels: cancer, cannonbeach, craterlake, family, friends, longbeach, travel

My birthday party yesterday was fantastic. Thank you thank you thank you to my amazing wife who organized it, and to everyone who came. The gig with the band this morning was fabulous. I am completely wiped out, but it was worth it. Some photos (click each one to see more from that event):

Labels: band, birthday, family, friends, music, neurotics