Penmachine

My wife Air is wiser than me—more self-aware, better at thinking long term. A big reason I'm not that way is because, until I developed cancer at the beginning of last year, I'd never had to face big, difficult decisions. I had a happy, stable childhood, did well in school, lucked into good jobs, and found her. (More accurately, she found me. See what I mean?)

Even after my cancer diagnosis, I've followed the path I've usually chosen in life. That is, I've coasted, and let gravity take me where it will. My treatment decisions have been easy ones. Follow doctors' orders. Get tests, have surgery, take chemotherapy and radiation, more tests, more surgery, more chemo, more chemicals, more treatments, coming up on two years' worth now.

On hold

The surgeries in my intestines were successful, but small nodules of cancer spread to my lungs anyway, and the chemical medicines for those haven't worked so well. The metastases continue to grow slowly, regardless of what my doctors have thrown at them.

My latest surgery a couple of weeks ago was my first that wasn't about attacking the cancer. It was simply to make my life better, to reconnect my intestines so that I'm no longer walking around with an ileostomy bag of poop glued to my belly. Now I have another new, healing scar, and I'm re-learning how to use the bathroom the way I used to.

That surgery prompted my wife to have a talk with me a couple of days ago. With her wisdom, and her insight, she's seen what I've been doing in my mind for the past couple of years. I've been treating my cancer as something to fight with everything the doctors and nurses can offer, no matter how sick they make me, hoping that one of those weapons will kill it so I can move on with my life. I've put my life on hold—and my family's life too, hers and our daughters'—to fight the disease, treating it as a phase to get through before I return to something normal.

Experiment, not treatment

Except that's not how it's going. The next treatment the B.C. Cancer Agency is offering me is a Phase I clinical trial of chemotherapy agents. That means it's a very early human test of the drugs involved, not even designed to find out whether the drugs work to fight cancer, but rather how patients like me respond to them—what levels they appear at in my bloodstream, how they interact, what side effects they produce. In other words, we've run out of the conventional therapies, and we're moving on to experimental ones that have a very small chance of working. They are, however, likely to produce side effects, even if they aren't effective in shrinking my cancer.

Air made me ask myself—after almost two years on hold, most of which I've spent hammered down by those side effects, or recovering from surgery—how I want to live my life with cancer. Because that's what it looks like I'll have to do. We don't know how long that will be: months certainly, years quite possibly. All indications are that, like my diabetes, I'll have cancer for the rest of my life. It will probably be what kills me, whenever that is.

Yet since I stopped my last chemo treatments in September, I've felt good, verging on healthy, better than I have in ages. Therefore, much of what I've suffered through, especially recently, has been from the treatments, not from the disease. I thought that suffering was a necessary part of the fight. So I thought. But now it's time to make some real decisions.

Real decisions

Do I want to be part of this new Phase I trial, to contribute semi-altruistically to cancer research, spending many days at the Cancer Agency getting tests, taking pills every day, maybe feeling sick all the time and getting more strange skin rashes, perhaps even developing other weird side effects like elevated blood pressure, maybe for no reason that might actually get me better?

Or do I want to look at something else, like Vancouver's Inspire Health Integrated Cancer Care, and the Callanish Retreats, to try different things and look at managing cancer instead of fighting it? Strange as it sounds, should I make cancer part of how I live my life, rather than something that stops me from living it?

When I heard about the trial yesterday, I assumed, almost unconsciously, that I'd proceed with it. But that's still coasting, just taking whatever the doctors serve up from a diminishing buffet. There are places I still want to go in my life, things I want to do, the husband and father I still want to be. Perhaps now is the time to go there, to do them, to be that, because I can't wait forever first.

I shouldn't waste my life trying win a fight that likely can't be won. I should take it off hold, and live it.

Labels: cancer, chemotherapy, death, family, ileostomy, inspirehealth, love, science, surgery, travel

I'm back home now. The surgery to reconnect my intestines into proper working order (almost a year and a half after my initial cancer-induced disconnection surgery) went well, and I am recovering about as fast as could be expected.

To no one's surprise, and I'm tired and sore and plan to do a bunch of sleeping rather than blogging, email, and so forth. Overall, it went very well, and I'm doing my best to avoid having to go back into the hospital with a blockage like a did last time.

Okay, I have to lie down now.

Labels: cancer, hospital, ileostomy, pain, surgery

In less than two days, I have surgery to reverse my ileostomy and reconnect my intestines into proper working order. It happens sometime on Friday, October 10. Having had four surgical procedures (three under general anaesthetic) since early 2007, I'm pretty blasé about the procedure itself. I'm a little apprehensive about the pain and recovery, which will likely have me in St. Paul's Hospital for about a week, and on soft foods for awhile after that.

Tomorrow I'll consume nothing but fluids in preparation: I've already had my last solid meal for awhile. I'll go see my cousin graduate from university in the morning, do various chores after that, get ready for the hospital in the afternoon, and then call to find out my surgery time.

It's still a bit like getting ready for a car accident you know is coming, so the nerves are there. But this time, I've been through the same kind of collision before. I know morphine works. I'll be renting a TV. But damn, there's still no wireless Internet at the hospital—I wish they'd get on that.

Labels: cancer, hospital, ileostomy, pain, surgery

I'm having another colonoscopy on Thursday, my first in more than a year and a half. It's in preparation for surgery next week to reconnect my intestines so I can get rid of the bag of poop I've had to keep glued to my belly since the summer of 2007. So I won't be posting here tomorrow, I don't think.

And you know, in the scheme of what I've been through in the past couple of years, a colonoscopy is nothing. If you're over 50 or (like me, it turned out) are otherwise at risk for colorectal cancer, go get one. They give you good drugs, so you won't mind.

In the meantime, check out 50 images in honour of NASA's 50th birthday, via Bill.

Labels: cancer, colostomy, hospital, ileostomy, science, space, surgery

My hospital visit a few days ago wasn't the last of it. I was back in Burnaby General's Emergency department last night once more, this time overnight. More harsh intestinal cramps (with bonus vomiting), almost certainly a sign of some sort of blockage, like the one I had right after my surgery last summer.

First thing today, my wife drove me directly from Burnaby Hospital to the B.C. Cancer Agency, where we met with my oncologist. He prescribed morphine and bed rest, and has me coming back tomorrow for some IV fluids. I'm home now, but I may get checked into the Cancer Agency ward for monitoring for a few days while my bowels rest up. I'm hoping to avoid another tube up my nose, but you never know.

At least this time my weight is back up, so if I lose a bunch of pounds I won't be skeletal.

Labels: cancer, fatigue, hospital, ileostomy, pain

I never thought I'd be so glad to hear fart noises.

Last week, I finished a round of chemotherapy (which started in October) and started a break of a few weeks during which I won't need to be at the Cancer Agency much, and won't be pumping my body full of poisons for a change. But cancer treatment has been fond of serving me curve balls: a post-surgical blockage, antibiotic-induced unconctrolled low blood sugar, a blood clot, and near zombie-like collapse from dehydration.

One week into my break, I landed myself in hospital again very early this morning. It wasn't a car accident or a bar fight or anything—rather, I went to bed at 11:30 last night with a bit of a tummy ache.

Which got worse, and worse, and worse, until I felt like there was a big gurgling gas bubble sitting sideways in my small intestine under my navel. The pain was enough that I didn't sleep at all, and by a little before 3:00 a.m. I had to wake my wife to call the Cancer Agency doctor line and ask what to do. They recommended heading down to Burnaby General Hospital Emergency, and forwarded my treatment history to BGH accordingly.

Here's the yucky part of the explanation, so be warned. I've mentioned before that I have a (hopefully temporary) ileostomy bag from my surgery last summer. That's like a colostomy bag, but connected to a different part of the intestine. In essence, last summer my surgeon snipped my intestines where the small one (the ileum) meets the large one (the colon), just to the right of my bellybutton, so that my colon could heal from the removal of my tumours.

The end of my ileum now pokes out a hole in my belly into the open air. (No, I won't show you any photos, but I will say that it is a reddish-pink little nub.) To catch the poop that would normally flow out the usual way through my colon, I regularly stick on a small, plastic, remora-like ileostomy bag, which I can empty every few hours, and which I change every few days. Most people who don't know it's there would never notice the bag under my shirt during the day, or might think I have some sort of geek gadget on my belt beneath the shirt hem.

The problem as we drove down to the Emergency ward at the ungodly hour of 3:30 a.m. (after waking up my parents and having them come over to keep an eye on the kids) was that my ileostomy bag was empty, which is not normal for me at that hour. I suspected, as I writhed around a bit in the passenger seat and cursed the slow-changing traffic light, that I had another obstruction in my intestine, which was preventing the food I ate yesterday from going anywhere.

As you'd expect, that doesn't feel too great. Fortunately, for once we found the BGH Emergency waiting room completely empty, and only had to wait about 15 minutes before I got a bed. The doctors and nurses gave me a couple of morphine injections, took blood tests and X-rayed my chest and abdomen, and let me lie down to rest.

I was able to get some sleep after the painkiller kicked in, and eventually the emergency physician let me know that there was nothing alarming on the scans (and no obvious large blockage), that my blood tests were within range for someone just off chemotherapy, and that nevertheless my small intestine seemed to be pushing food waste through more slowly than normal.

The treatment? Go home, stay on a soft and fluidy diet, and wait for the natural passage of whatever minor obstruction was causing my nasty gas pains. So we did that, arriving back just before the kids went to school, and I've slept most of the day as the pain and bloating have very, very slowly abated. I've been able to empty out the bag a couple of times, and just in the past half hour or so, my ileostomy has been making what I would normally consider annoying involuntary farting sounds.

Except now, for once, they're a relief. Thanks, intestines, for working once more. And thanks to my wife and family for shepherding me through this, again.

Labels: cancer, chemotherapy, family, fatigue, hospital, ileostomy, pain

Beware: graphic blog post ahead.

Chemotherapy isn't something your body gets used to—the side-effect symptoms generally just get worse and worse as you proceed with treatment. While I've had it better than some folks since my current round began in October, this week—and today in particular—has sucked.

I finished my usual chemo dosage on Friday, but my recovery, usually pretty quick, was slower then normal this week. I had my delayed CT scan Friday evening, then went out for dinner, but yesterday, Saturday, I felt hung over all day, with a dull headache and fatigue.

This morning was a disaster. One of the potential side effects of some of the chemo drugs is late-onset diarrhea, something I haven't had in the four months I've been on this treatment. But I got it last night. Because I've had a temporary ileostomy bag since the summer, I don't have the urge to go to the bathroom. The bag glued to the side of my belly simply fills up, and I have to notice and then head to the washroom to empty it. I did that around 1:30 a.m.

But if things go badly, as they did today, the bag leaks. I noticed around 7 a.m. when it filled up again. I was able to leap out of bed, charged with adrenaline, and avoid making a big mess. After cleaning things off I got into the shower and prepared to put on a new bag, but while washing my hair and shaving, I suddenly felt like I was going to pass out.

Normally for me that would be a sign of diabetic low blood glucose, but after spilling test strips across the kitchen counter, I checked my levels and they were normal. Something else was wrong, and I felt cold fear. I stumbled into the bedroom, still dripping from the shower, and woke my wife as I lay down to keep from falling over. Getting horizontal, I immediately felt a bit better.

After assessing the situation and talking to doctors at the Cancer Agency, she discovered that fluid loss probably made me dehydrated and light-headed. Electrolyte imbalances likely gave me the hangover-like symptoms too. I've been drinking fluids and taking Imodium, as well as sleeping, all day since. I feel mostly normal now, but the headache is still there. My wife is having a nap too, because she was out late last night and didn't get enough sleep before I zombie-crashed her awake first thing today.

I hate having to put her and the kids through crap like this. It scares me too. I hope tomorrow is better.

Labels: cancer, chemotherapy, diabetes, family, fatigue, ileostomy, love

For kids who live in Vancouver, snow is a bigger treat than in much of the rest of Canada. While it does snow here every year, it tends to arrive when cold outflow winds from the B.C. Interior get overwhelmed by a warm wet front from the Pacific—so it may very well dump down and then melt almost immediately.

Several times over the past few weeks, therefore, I've planned to take the kids out sledding in the fresh snow, only to have the sky turn to rain and the ground become unpleasantly sloppy before we get the chance. But not today. It was just around freezing, but the snow was pounding down, so we packed up and went.

We were the first sledders today at our local park, which has slopes as steep as any ski hill. So my daughters were able to get a bunch of good runs in before they were wet and cold and we went home for hot chocolate and peanut butter sandwiches. Unfortunately, because of my current cancer treatment, blood thinners, ileostomy bag, and all that, I don't think sliding and bumping down the hill is a good idea for me, so I just watched and took photos.

Labels: cancer, family, ileostomy, park, sledding, snow, vancouver, weather

Now that Labour Day is here, it's time to refine the plans:

1. Sometime this month, I'll have a portacath inserted in my upper chest to prepare for more chemotherapy in October.
2. I have numerous appointments with oncologists, socials workers, pain management folks, and so on, to prepare for the next phase of treatment.
3. I'll also try to gain more weight. I'm up above 160 pounds (72 kg), which was easy, but going further seems to be a bit of an effort—I need to eat more than I might want to put on weight consistently.
4. Once I've regained some more strength around the end of the month, we'll start more chemotherapy.
5. I'll be getting three different drugs through the portacath, in a sequence that has me one day at the Cancer Agency, two more days of treatment at home, then two weeks off—for six months or so.

We've dealt with the cancer in my bowels. As far as we know, it's gone. The chemo is to address the metastases in my lungs. I hope we can get rid of those as well.

Labels: cancer, chemotherapy, fatigue, hospital, ileostomy, pain, surgery

It's been more than six weeks since my major cancer surgery, and only now do I feel like I've turned a corner in my recovery. Not that I'm "all better," but I'm improving, and at a better pace.

For instance, I was able to walk with my daughter and our friends' dog a full four blocks from our house and back, without using my cane or a wheelchair. I was tired when we returned, but I made it. Some of my pain and other symptoms are gradually going away. I may even be ready to start my next round of chemotherapy soon, which is something I am looking forward to—an odd thing to say. I've gained some 15 pounds from my record low in the 145-pound range, so that's a relief, even though I'm still a long way from my 200-pound average of the past several years.

But the fatigue, huge and oppressive, is my main remaining side effect, and it isn't changing much. Yesterday I drove the car, had a doctor's appointment, and went out for dinner. After that I had to sleep for four hours to recover. Today I took the kids for breakfast at McDonald's, and had to lie down for an hour afterwards too.

So it's a shallow corner, but I'm turning it. I think I'll be able to walk my daughters to school in a couple of weeks. That was my goal.

Labels: cancer, chemotherapy, fatigue, hospital, ileostomy, pain, surgery

I haven't blogged, or read or responded to email, or done much on Facebook, because I am so, so tired.

The biggest bothers of recovering here at home are that fatigue, which is quite unbelievable (walking a block and a half is like running a marathon), and some persistent pain I'm having in my butt, part of which is due to a minor bedsore I developed during my last hospital stay. I went to the Cancer Agency today to talk about that, among other things, as well as to talk to a counsellor for the first time in my life. I'm maybe half-way through my treatment now, and it is a grinding slog, so it will help to have a professional to consult about it.

Tomorrow I'll also talk to Dr. Phang, my surgeon, about the pain and what I should do about it. It's all about the doctors and hospitals and clinics right now. And eating. I'm eating a lot to try to gain some weight, though I'm not sure if that's working yet.

Have a good long weekend. I'm hoping mine's a bit of an improvement. Don't forget that my dad is also blogging about how I'm doing, sometimes in more detail.

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

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

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