Penmachine

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

My friend Jeff pointed me to the site Damn Interesting, which somehow I hadn't heard about before. But it's exactly what it says it is, so I've added it to my feed subscriptions and my blogroll.

And yeah, the colonoscopy went fine. Nothing to report, and the drugs were good enough that I don't remember a thing about the procedure.

Labels: friends, geekery, hospital, web

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

It's been close to two months since I last had a chemotherapy treatment, after about seven months of if every two weeks. I've been grateful for the break: other than the old bowel-blockage thing last month, I've been feeling pretty good.

There remains no evidence of any recurrence of cancer where surgeons removed the major tumours from my intestine exactly a year ago. However, the metastatic lesions in my lungs—there are four, created when cancer cells made their way through my body and somehow took root there—continue to grow very slowly. They are all small, the largest one being only 1.4 cm across, less than the diameter of a dime.

But that's still too big, and slow growth is still growth. So starting tomorrow, we're attacking it with one of the same old chemo drugs (irinotecan, a.k.a. Captosar) and a new one (panitumumab, a.k.a. Vectibix, manufactured by Amgen Pharmaceuticals). I'll be taking them intravenously every two weeks for some time to come—how long depends on whether they are effective.

This is a clinical trial, a scientific study, so the first and second treatments with it will be time-consuming: on Monday I have to be at the clinic at 9:00 a.m., take a blood test, have the treatment, and then have more blood tests one hour, two hours, four hours, six hours, and eight hours later, so I won't go home until 8:00 p.m.  And then I must come back around 11:00 a.m. for the next three days for more blood tests. Then, two weeks later, the same thing.

But after that it will simply be the treatment every two weeks, and this time I don't need to use the "baby bottle," so that will be a relief. I hope that the side effects won't be too bad. Apparently I am likely to get some skin rashes and pimples within a week or two, but that might be the worst of it, other than the usual short-term nausea and longer-term hair loss. (And my hair has been coming in so nicely too.)

And I'm sure a lot better than I was a year ago!

Labels: cancer, chemotherapy, hospital, surgery

I've noted before how remarkable my wife is, both as a person and as a spouse. She's also amazing when I'm sick and when I'm not.

This week she had to deal with my being nastily ill once again: she not only shuttled me to emergency wards three different times and sat up with me there till insane hours of the early morning, but also kept the kids fed and clothed and schooled and loved, came to visit me with supplies (including some amazing lip balm), ran the house, went to work, and made sure everyone important knew what was going on with me.

I'm home now, but it was a gross week. After my overnight trip to Burnaby General Emergency (which wasn't too helpful) and visit to my oncologist (slightly more so), we went home. But I couldn't stay there. My intestinal pain got worse than ever (which is pretty darn bad), and we zipped down in the car to the emergency ward at Vancouver General Hospital instead—it is near the Cancer Agency, and has many more resources for handling both colon cancer and intestinal blockages.

I was at VGH for four days, and just returned home a couple of hours ago. During that time there was vomiting, lots of morphine injections, several X-rays, plenty of intravenous fluids, and no food or drink for the first couple of days. By Thursday things were improving. But man, overall it was brutal.

Now that I'm back on the couch in the house, I've decided to declare email bankruptcy for the week, purge my Gmail inbox (current count, 899 unfiled messages), and start over from scratch in the next couple of days. So if you emailed me recently, I won't reply now, sorry.

But I will get my wife some sort of nice treat in thanks for everything this week, that's for sure.

Labels: cancer, family, hospital, love, morphine, pain

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

It's difficult for me to understand what it's like for my family and friends as I go through cancer treatment. As I've written before, in some ways it's easier for me than for them, because at any time I know how I feel, and at least tell myself that I have a decent sense of how I'm doing. That's not always clear to those close to me, and I know they worry.

I think I have a better understanding of it this week, because my wife had elective surgery a few days ago. She was in hospital overnight (which the doctors had expected and planned for, but which we didn't know about in advance), and has been recovering here at home. Since I'm not on chemotherapy this week, I'm in reasonably good shape and have been able to keep the house running fairly well.

But I wish there was more I could do to alleviate her pain and other discomfort. I also have little sense, from hour to hour, how she's feeling. I feel a bit useless. And this is relatively short term—she's been taking care of me, and doing a great job of it, as I've been through surgeries, chemo, radiation, drastic weight loss, and much more for well over a year.

This is that "in sickness and in health" part they talk about when you get married. I'm glad we can be there for each other.

Labels: family, hospital, pain, surgery

I was supposed to have another CT scan today, but the scan machine was broken, and the technicians were on the phone with GE, who make it, to try to find a resolution. My scan will be rescheduled.

Now there's some tech support I wouldn't want to deal with.

More chemotherapy tomorrow. Only two more treatments after that. As far as I know for now, anyway.

Labels: cancer, chemotherapy, ctscan, hospital

Here's what I wrote, hurriedly, on Facebook and Twitter earlier today:

CT scan good: lung tumours either stable or "noticeably smaller." Alas, small blood clot in lungs, must take blood thinner needle daily now.

Let me explain that. This morning, I talked to a social worker in the patient counselling department at the B.C. Cancer Agency, as I do about once a month, just to get things off my chest. I was having a CT scan later in the day, which would be the first test in several months to see whether my current chemotherapy round is actually killing my cancer. I felt mixed about that, not knowing what path my life would take in the next few months, even more so as I prepared to give a speech at my friend Martin's memorial service on Sunday.

The scan itself was uneventful, and I didn't expect to hear any results until Tuesday, when I next see my oncologist Dr. Kennecke. So my wife and I drove back to Burnaby. The chemotherapy has started to thin my hair, which isn't falling out in clumps, but is shedding some in the shower, so I decided to get a short haircut again in case that gets any more pronounced. After that, my wife went to find some shoes and I had a snack at the food court.

While I sat at the table, my phone rang. I expected my wife, but it was Dr. Gill, another oncologist from the Cancer Agency.

"The CT scan found an incidental blood clot in your lung," she said.

Oh shit, I thought.

"Are you having any trouble breathing, or chest pain?"

I wasn't.

"That's good. We'd still like you to come back to the Agency this afternoon, so we can start you on some blood thinners. How soon can you be here?"

It was 3:45. I said around 4:30.

"I'll see you as soon as you arrive."

I called my wife. She freaked out a little. I called my dad, who was watching the kids. He sounded calm, but I knew he'd also be freaking out a little. Back into the car, through traffic, at the Cancer Agency by 4:30.

A nurse immediately took us aside. "Take this form up to the lab for some blood tests right now. You can also take this prescription to the pharmacy down the street and get it filled immediately. Then come back here to Station C and Dr. Gill will see you." In a flash we were back at the elevator, blinking and stunned, my wife to go the pharmacy and me for my blood tests. We were both back within 20 minutes, when Dr. Gill met us and explained what was going on.

Some of the chemotherapy agents I'm taking, particularly Avastin, can lead to bleeding and blood clotting. I've noticed that in places like my nose. Turns out it's happening in my right lung too.

So now we have a new drug in our cupboard, a series of syringes of anticoagulant (blood thinner), which I must inject subcutaneously, the same as I have done with insulin for the past 17 years. I'll do that once each day for the next six months or so. The drug will help prevent the clot I have from growing, and should help keep new ones from forming. I will also bleed and bruise more easily as a consequence.

The good news is that Dr. Gill also told us about the main result of the CT scan, which is that the metastatic tumours in my lungs have not grown. Indeed, some are stable, while others are "noticeably smaller." So the chemo is doing something, which is the whole damn point. While obscured by our alarm about the blood clot, that is the kind of news I've been waiting to get for a whole year.

The nurse who came to show me how to administer the blood thinner (it's so similar to insulin injections that I was very comfortable with the procedure right away) also listed off some of the possible side effects, but said, "These probably won't be a worry for you, because you're young and healthy."

I laughed. People like me with stage 4 metastatic colorectal cancer don't apply the word "healthy" to ourselves too often. But that was also good to hear.

Labels: cancer, chemotherapy, ctscan, hospital, therapy

Back in July when I spent the month in hospital, I had several neighbours. The last one, who came in for intestinal surgery while I was on the ward and was still there when I left, was an older guy who'd moved to Canada from the Netherlands after World War II, worked as a machinist in a mill, and now likes to play golf in his retirement.

In the 1960s, he built his own house in Squamish, near the mill where he worked. I don't mean he paid people to build it—from what he said while we shared our hospital room, he constructed most of the house himself, with his own hands. He still lives in it.

I admire that. It's something I don't know how to do. I build ephemeral, non-material things like web pages, but I'd have no idea how to put together a building to shelter my family, and which could last more than 40 years. My grandfather was a carpenter, and helped build houses for a living, though he didn't build the last house he lived in, which is where I live now. My friend and podcast co-host Paul built himself a garage, and could probably pull off a house if need be.

For most of the vast span of human time, for hundreds of thousands of years in Africa and beyond, some of the only things worth knowing were how to create a shelter, and find food, and stay warm. Things many of us, like me, would have great trouble doing if cast out to our own devices in the wild. Today, even those who do know how to one thing, like build a house, might not know how to grow food or hunt an animal. That's a purely modern situation.

At least I was a Boy Scout. I can start a fire if I have to.

Labels: family, food, home, hospital

Tonight my wife was about to cook some dinner when she accidentally sliced a deep gouge at the base of her thumb with one of our sharp, sharp knives. That short-circuited dinner plans, but fortunately there is a walk-in clinic nearby where she could get treated quickly, with a tetanus shot, some medical tape, and bandages. We were in and out within half an hour. (Had it been late at night, we'd probably still be waiting at the hospital ER.)

Also luckily, I'm feeling surprisingly good today after a nurse removed my chemotherapy "baby bottle" following the allotted two days of treatment. So I was able to prepare the Hamburger Helper and salad tonight while my wife recovered on the couch with a book and a nice glass of wine.

Now we're sitting by a fire in the living room, and the kids are watching some TV. It's a nasty rainy night out there, but we are dry and warm inside. I'm tired, but I'm glad things are back to normal.

Labels: food, hospital, pain

Compared to everything else that has happened recently, that surgery was a walk in the park. I'm home now, and going to have a nap. Or watch some more MythBusters.

Labels: cancer, family, friends, hospital, mythbusters, pain, surgery

Back in July when I had my big cancer surgery, Dr. Gourlay at St. Paul's inserted a small plastic stent into my left ureter, which needs to be removed. I've been waiting to hear from his office about when that might happen.

This morning they called to remind me that it's happening tomorrow. Except I never heard about it in the first place—the "reminder" was my first notice. That's fine. They will be sedating me, so I need to be at the hospital at 7:30 a.m., and the procedure is pretty short, so I should be back by lunch. (Much shorter than my last stay in hospital, I'm glad to say.)

My wife and parents and kids have been tremendously understanding as we shuffle the logistics around to make this work on short notice. I'm tremendously lucky to have them all here supporting me. Plans change fast around here sometimes.

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

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 turns out that the other antibiotic I'm taking, metronidazole, has fatigue as a side effect—just what I need. Yesterday I woke up, got the kids breakfast, and flaked around for awhile. Then we went to Ikea for a couple of hours. When we got home, I slept for another three hours before dinner. At 7:30 I slept again, all night, until almost 10:00 this morning.

I think I could sleep all the time given the opportunity. Most of the time, when I think "what was I doing 12 hours ago?", the answer is "sleeping." It's insane. Fortunately I'm only taking these pills for ten days, then perhaps I'll perk up again.

It would probably be fine if I weren't so tired to start with, but compounding the fatigue I already have is more than I'd prefer to deal with. Maybe a bunch of coffee would help.

Labels: ambulance, antibiotics, cancer, diabetes, fatigue, hospital

Yesterday turned out not so well after all. Turning corners is sometimes tricky. Around 4 in the afternoon I started getting diabetic hypoglycemia—low blood sugar—which does happen from time to time. I've been diabetic for 16 years, and my usual treatment is a simple can of Coke, which usually takes care of it quickly.

Not this time. I was unable to stabilize my blood sugars with Coke, with snacks, with juice, with brown sugar, with pudding, or with anything else. My wife became worried about me, as did I, because unchecked hypoglycemia can make me pass out.

Eventually we called an ambulance, which took me to Burnaby Hospital's Emergency ward, where they stabilized me and gave me some food. A few hours later the doctor discharged me and I went home.

After I had a bath and calmed down some, I read through the customer information for the couple of new antibiotics I started taking, which were the only new things that had happened yesterday.

Sure enough, one of the two drugs "may affect your blood sugar." No kidding. I had specifically asked my prescribing surgeon whether everything was okay for diabetes, and had mentioned it to the ambulance crew, and the nurses, and the doctors at the hospital, but no one knew about that. Just a reminder to be vigilant about your medications—the professionals don't know about every possible interaction.

And I'm fine now, just tired again.

Labels: ambulance, antibiotics, cancer, diabetes, fatigue, hospital

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

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

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