I had another CT scan today, to see whether my current chemotherapy is doing any good to slow or reverse or do something to the ever-expanding tumours in my chest. I'll find out the results, and what that means for my chemo regimen, next week.
In the meantime, following my most recent chemo treatment last weekend, the side effects continue. A relatively new one is that if I haven't eaten for an hour or two, the first thing I pop in my mouth causes the salivary glands on either side of the back of my tongue to ache as they kick in. I can almost feel them pumping. It's not really painful, just bizarre.
And there is the endless fun with my digestive system. Last night I was in the bathroom for nearly an hour, then, when I thought I was done and was brushing my teeth to prepare for bed, suddenly my GI tract decided things needed to clear out from the other end as well, and I puked into the sink.
Next, to top it off, the sink clogged. I stared at it in disbelief for a moment, then searched our closets for the plunger at 1:00 a.m.—and I'm sure glad it worked once I found it. Very pleasant, I must say, especially in my chemo-nauseated state.
I didn't sign up for this. But at least I'm alive to complain about it, and I have a wonderful sleepy wife and puppy to keep me warm once I do get into bed tonight. They should help me sleep very, very well.
Today is exactly three years since I found out I have cancer. I had it longer than that, at least since the spring of 2006, but that's when I knew. Three years of hell, total hell. So, another cancer post—but that won't be all I write here, just as it hasn't been since January 2007.
Chemotherapy is weird. Not the concept of it, really, which is pretty simple: poison your body with chemicals that try to poison cancer cells more than healthy cells. But being on chemotherapy is weird.
Every combination of chemo drugs is targeted a particular variety of cancer, and every person gets different side effects depending on the drugs and on our own physiology. I've been through numerous rounds of different types of chemo in the past three years. The stereotypes of nausea, weight loss, and hair falling out are true—all too true in some cases, such as when I barfed up my entire breakfast yesterday morning—but they are not universal. I've only had to shave my head once (so far), for instance.
But most chemo regimens have a variety of other, much stranger side effects too. There was that brutal acne I had a couple of summers ago, for instance. The warnings to avoid anything containing grapefruit or starfruit in other instances (though oranges, lemons, limes, and other citrus were fine). Strange black lines developing in my fingernails. Sensitivity to sunlight. Lots of bizarre and nasty intestinal side effects that sometimes had me in the bathroom for three or four hours at a time. And so on.
This time around, I have several different oddball side effects at the same time:
There may be more symptoms coming, I don't really know. But it's weird. And exhausting.
I'm back in the world of the living again. It was a pretty rough weekend, I tell you. I had chemo like this back in 2007 and 2008, but I don't think I had all three of these chemicals (oxaliplatin, leucovorin, and 5-FU) all together previously, and the infusion bottle I had from Friday to Sunday at home also dispensed more of the 5-FU in it than I'd received before, so I was getting a larger dose than I'd encountered in earlier rounds of chemo.
So, in short, it suuuuuucked. I didn't actually throw up, but I basically doped myself up with prescription anti-nauseants and Gravol so that I slept most of the weekend, and felt like death when I was awake. I was out of commission and useless to my family for three full 24-hour days at least. It was only this morning that I felt anything like normal again, so I'll rest today and may get back to some sort of functional life until I do it again in a couple of weeks.
Chemo is no fun, that's for sure. I recommend avoiding cancer just so you can not have chemotherapy, entirely aside from all the other reasons.
I found out yesterday that there are new cancer tumours in the centre of my chest—several of them, each 2 to 3 cm in size, near where my lungs meet. They showed up on the CT scan I had Monday, and they were not there on the scan in September. That means they've grown quickly, which is fucking bad news.
After meeting with my doctors at the B.C. Cancer Agency yesterday, I've stopped using cediranib, the drug that had kept my existing lung tumours growing only very slowly over the past year. I'll likely return to more conventional and aggressive chemotherapy again sometime in the next couple of weeks.
Since I found out about my cancer almost three years ago, it has never been in remission. Some people who read this blog or know me in person have, mistakenly, thought otherwise, because I've often appeared in good health.
But my cancer has never shrunk, only slowed down. It started in my large intestine, then spread to my lungs from there. The bowel tumours came out with surgery in 2007—otherwise I would probably have died later that year. But the lung metastases can't really be tackled with surgery or radiation, because there are too many, too widely spread, and too deep in my body. Chemo is the best option.
This is serious. Faster-growing metastatic tumours near my lungs, my heart, my trachea, and my esophagus are dangerous and potentially lethal. In addition to attacking them with chemo, in a few months there may be some clinical trials of MEK inhibitor drugs available to me, but that's not certain. Those experimental medications operate on the kinase cascade metabolic pathway that helps cancer cells grow. So we'll see about those too.
New, fast-growing cancer is not what anyone wants in my body, but I can't say it's unexpected, or a genuine surprise. This is how cancer often goes. Treatments work, sometimes better, sometimes worse—and then sometimes they stop working. It's always a fight, and one I might lose.
I've been a little sick this week. Not with an infection, but with what I think are side effects both from my cancer medication and from the H1N1 and seasonal flu shots I had last week. My right arm, where the H1N1 vaccine went in, is still sore like I've been punched. I've had periodic mild fevers all week, I've slept a lot, and the intestinal symptoms I usually have are more pronounced than usual.
I assume it's the combination of side effects that have made me a bit more ill, but it's hard to know. My cancer is growing very slowly in my lungs, but it's not shrinking. So I can expect that eventually it, or the effects of long-term therapies, or both together, will make me weaker and give me more pain. I don't think that's happening now. I expect and hope that as my immune system builds antibodies to the two flu strains (something that takes a week or two), I'll perk up a little.
I can't be certain. I always have some fear that a new weakness or pain I develop won't get better. The fear itself can be tiring, either at its usual low level or when it flares up. But that too is something I've become used to. Fear, like pain, like fatigue, comes and goes.
Some other things, I have discovered, do not. They stay. Love is one.
It's Sunday night and I'm not sleepy. Well, I am, but I can't sleep, don't really want to yet. Everyone else in the house is down for the count until morning. I've always enjoyed this time, taking me back to being an only child alone with my thoughts—except my wonderful wife is breathing beside me in bed, which is much better, and endlessly comforting.
But tonight's not happy, or sad. It just is. Every day is a fight. Every. Fucking. Day. And every night too. Not a fight with a person, but with my own cells, useless greasy tissues that don't belong where they're growing in my lungs. I never know how much of my pain and fatigue is from them, and how much from the punishing medicine that slows the rate of cancer cell division inside me.
I spent a lot of this weekend in the bathroom. I don't know if that's a pattern yet, or just a rough few days of side effects. (But not as rough as some have been.) I cooked a pretty nice tikka masala dish tonight, and my wife brought home a lemon meringue pie for dessert. Our dinner with the kids at the kitchen table was my best part of Sunday.
Sometimes, like now, I don't want to sleep because I don't know what I'll be like when I wake up. Will I feel better, worse, the same? I can't predict, but at least I'm confident I will wake up. Will I sleep well, and rise rested, or toss and turn? Or will I be in the bathroom again, perhaps for hours? I don't really know.
I try to live day by day, but you have to plan something, even if your plans fall through. I have a few plans for tomorrow, and maybe I'll get to some of them. Or at least one. Or, just maybe if tonight goes poorly, none. These are my days and nights, more than three years after I developed cancer, and almost three years after I found out about the first (but not the worst) of it.
A fight. Every. Fucking. Day. And night. And more tomorrow. Time to sleep now, I think. To be ready.
My last post (and the delay since I wrote it) emerged from worry and fear—which was perfectly reasonable, but has abated today. I'll explain.
A couple of weeks ago, while my wife Air and I were at Gnomedex in Seattle, I took a break from my current cancer medication for a couple of days to avoid nasty intestinal side effects during the conference. That's nothing unusual: I do the same every month at some point. But this time, as my digestive system slowed down, I got some strange pains in the middle of my back during the night. They kept me awake until I discovered that sitting up in bed reduced them, and I could sleep. They disappeared once I resumed the pills (and the poopfests that result).
But the pains came back, more frequently, sometimes waking me up in the night, or keeping me from getting to sleep. Eventually they appeared during the day. The feeling, sharp and deep, reminded me of the bowel blockage I had last year, which landed me in hospital for a few days—only (luckily) about 10% as painful this time. But nothing was blocked, believe me. And that lack of blockage provided regular relief, as the pains moved around and then went away, to come back another time.
Having pain that came and went, but always started just below where I know there are tumours growing (slowly) in my lungs was—needless to say—disconcerting. Fearsome. Perhaps even terrifying. So I was nervous when I visited the B.C. Cancer Agency today for my regular monthly checkup.
But two doctors and a nurse all think, given my long-winded explanation of what was going on and how the pain behaved, that it's a fairly simple digestive problem, likely treatable with something as simple as Maalox Plus and, at most, some Tylenol with codeine. My intestines have certainly been through the wringer over the past couple of years, and there could be adhesions or scar tissue in there—or they could simply be misbehaving because of what the cediranib I'm taking now inflicts on them.
Anyway, there's no reason to think it's the cancer getting substantially bigger. My kidneys aren't failing. There's no blood clot or heart attack going on. So now, while I'm uncomfortable some of the time, the pain is no longer terrifying. Behold the power of comforting words.
I've come to realize something in the last few days. My cancer treatment drags on, keeping me alive but not really getting me better. I continue to manage my diabetes and live with an artificial IV port in my chest. I take lots of pills and shots, get medical tests, and see doctors all the time. I can't safely travel very far.
More to the point, I hurt, and I'm tired. Many parts of my body simply don't work the way they're supposed to. Most of the time, I'm nothing close to genuinely well. I may never return to my great job. I've been like this in some form or another for more than two and a half years.
So here's what I realized. I'm a 40-year-old man whose body has become much older. I'm a youngish guy in an oldish container. There are plenty of people three decades beyond my age—including my own parents—who feel better than I do, and can do more. And the hard part (for all of us) is knowing there's a good chance they'll live longer than me too.
For the vast majority of human history, living to age 40 was an achievement in itself. Even a hundred years ago, Type 1 diabetes like I have was a death sentence too—I would have died in my early 20s, before I had a chance to marry my wonderful wife or have two great children. I'm glad I've had those chances.
If I were (for instance) 75 years old now, it would be easier to accept what cancer has done to me, and to acknowledge that living (for example) another five years would be a pretty good achievement. I'm trying to think more like that—not to be fatalistic, but to be pragmatic, to know that while I'll keep fighting, without radical new treatments or some very good luck, it's probably a losing battle. But that's not a failure.
I'm sitting on the back porch in the sun, drinking a coffee. In a few minutes I'll help my kids make some cake. It's a good life.
A couple of days ago, I woke up and looked at my clock radio, reading 1:22. That surprised me—I didn't think I'd slept in till well in the afternoon. But it turned out I was just at a funny angle, and couldn't read the top of the first seven-segment digital numeral. It was actually 7:22 a.m., so I went back to sleep and woke up a couple of hours later instead.
Then there was today. My current cancer medication causes somewhat unpredictable intestinal side effects. Last night included some of the worst. I was in the bathroom from midnight until just before 2 a.m., then again from 4 to 6, then up and down every half an hour or so until at least 9:30 a.m. In other words, I had perhaps three hours of sleep before morning.
So, when things had calmed down enough, I feel asleep again. Guess what time I woke up? 1:22 p.m., for real this time.
Sometimes, for a few days, it's easy to forget how sick I am. But I found out I have cancer two and a half years ago, and I've been under some sort of treatment—chemotherapy, radiation, surgery, or recovering from those things—the whole time. Tomorrow I'll hear the results of my latest CT scan, good or bad. That will help determine what comes next.
Last night I hardly slept. I was in the bathroom at least once an hour, sometimes several times, right through till 6:00 a.m., and luckily my wife Air was able to get up and make sure the kids got off to school, which is usually my job. Side effects of cediranib, my current medication, kept me up. They're hard to predict, so when I felt them coming on last night I had no idea whether they might clear out my intestines in an hour, or whether it would take all night. All night it was.
I will also note, without further comment, that the bag of popcorn I ate when I took the kids to the movies on Saturday was a very bad idea.
Now I'm awake, taking some Advil and hoping to recover enough to get out of the house sometime today. Before she went out to her appointments this morning, my wife put a second coat of varnish on our stairs. They look good, and there's a fan helping them to dry. We need milk and butter, the baby chickadees are growing in our birdhouse, I love my family. Life continues.
It's a cliché that without health, we have nothing, but clichés exist for a reason. Here are my kids when they're healthy:
This week has been a bit of a worry because our younger daughter (top, in yellow) has been home sick for a couple of days with a vague malady (nothing like swine flu, fortunately), while yesterday, our older daughter (bottom, in fuchsia) tripped during gym class and made a total face-plant on the school gymnasium floor, leading to a doctor's visit to rule out a concussion.
(Coincidentally, two other kids also hurt themselves during the same gym class, even though they weren't doing any oddball activities—one gashed his head, the other just banged his leg and didn't have to leave school.)
Of course, I'm often laid up with side effects from my cancer medication, and this week even my wife had to ice an ankle she twisted a little while ago. So we've seen an inkling of what it could be like if we were all out of commission. I'm glad that's not the regular state, at least for the other three members of my family.
My first-ever filling is done. As I expected, it was pretty straightforward. It took about 20 minutes once the freezing was in, on a beautiful sunny day with a wonderful view of downtown Vancouver from the dentist's chair. The only surprise was how sore my jaw got from keeping it open the whole time, with the dental dam in my mouth.
The local anaesthesia is starting to wear off now, but even that's not too bad. My upper lip no longer feels like a flap of rubber, for one. Unfortunately, I'm having some of those interminable intestinal side effects from my cancer medication now. That doesn't help, but it does make any residual dental pain the least of my problems.
Time to watch Destroyed in Seconds. It's a good distraction while I'm out of the bathroom. Speaking of distractions, I picked a better one to hear on my iPod during the procedure: the always incisive and funny Savage Love sex advice podcast.
I had to turn up the volume during the drilling.
I inherited my Oma's strong teeth: when she died at age 91, she still had most of her natural teeth, despite having lived through two world wars, the Berlin Blockade, and a career as a restauranteur. While I had lots of orthodontics when I was a kid, and had to have all four widsom teeth removed in 1990, I have never had even a single cavity.
Until now. When I went to see my dentist this afternoon for a routine cleaning, a bit of sensitivity and an X-ray showed a tiny amount of decay on the front surface of the last molar on the top left side of my mouth. I'll set up an appointment to have a filling next week.
Since my teeth have put up with almost 40 years of abuse so far, I can't really complain. Especially considering how minor a cavity is compared to the other shit I'm dealing with these days. A few years ago I would have been pretty disappointed by tooth decay; now it's almost laughable.
In fact, there's a good chance the only reason I have this cavity is because the chemotherapy and other cancer treatments I've had over the past couple of years are pretty hard on my immune system and the rest of my body, teeth included. My dentist said my gums are actually in surprisingly good shape, considering. My Oma-teeth are still holding in pretty strong.
Not only that, but after all the surgery and stuff I've experienced recently, and all the heavy-duty painkillers and other drugs I've had to take, a bit of dental work is about as threatening as a mosquito bite. I'll drop in for 45 minutes, have my jaw frozen, listen to my iPod, and head home. From my current perspective, it's a piece of cake.
I haven't written about my cancer treatment much here recently, but that's not because nothing is happening. It has been exactly two years since I first found out I needed major cancer surgery (though I didn't realize at the time how long this would go on). I've been through several such surgeries, radiation therapy, numerous bouts of chemo, and a whole range of side effects. In some ways, despite its severity, my cancer treatment has become part of the background of my life.
Since this past November, I've been taking a fairly hefty dose of cediranib, a relatively new experimental anti-cancer drug. I take a pill or two once a day, which is an improvement over the hours-long IV infusions I've had before. And of course I have side effects.
They're different this time. Rather than overwhelming fatigue and several days of nausea every couple of weeks, they are intestinal, and less predictable. To summarize and not be too graphic, my family has come to call the bouts of symptoms I get every couple of days "the Poopfest." When it happens, I'll often be in the bathroom for an hour or two at a time, or leave the washroom to come back to bed, then have to turn around and go right back. Sometimes I get what I call "Jurassic Gut," where my abdomen sounds like a Spielberg dinosaur growling, and those substantial gas bubbles can be painful.
For other patients, the drug can also cause tiredness, skin symptoms, and high blood pressure. I've been lucky not to get all of those. My blood pressure is naturally a bit low, for instance, so even when it has risen a bit, it's well within normal range. But this week has been particularly harsh.
I developed a chest cold—the rest of the family got it too—but it has hung on, and that's when the fatigue set in. The past few days I have slept, and slept, and hardly been out of the house. The Poopfest has turned into diarrhea that sometimes lasts most of the day. Last night we all went to a friend's party for a few hours, but when we got home my Jurassic Gut was simply astounding, and lasted for well over three hours. I couldn't get to bed till 2 a.m., and while I think I'm slowly getting better today, it is exhausting.
When I'm feeling well, which I do sometimes, I could almost imagine going back to work. But then things go a bit sideways like this, and I know I'm still pretty ill. In a couple of weeks, I'll find out after my next CT scan in mid-February whether the cediranib is helping to slow down the growth of my lung tumours. Hope so.
The main side effect of my current cancer drug, cediranib, is intestinal. I have to go to the bathroom a lot. Sometimes a whole lot. The last two nights, it's been at least once an hour, sometimes more, all night long. On the night of December 30, I didn't sleep at all between midnight and 4 a.m. because of it.
Last night, New Year's Eve, was even worse. I slept a little, intermittently, through the night, but I woke up frequently and rushed to the toilet, well over a dozen times. Between 7 and 8 a.m. alone, that happened six times. Afterwards, things settled down somewhat and I was able to sleep.
And sleep, and sleep. I woke up around noon to eat something, then again at 5 p.m., but otherwise I have been in bed all day. My butt is sore from the night. Now I'm watching SpongeBob SquarePants. So far this is the worst day of side effects since I started this treatment in November. Most days haven't been anything like this, so I hope tonight and tomorrow are much better.
I still prefer this to the nausea, pain, and morphine dependency I've suffered before—I think. Maybe this means the drug is doing something. I hope so. And I hope January 2 is an improvement.
It's hard to say how our post-Christmas family vacation in British Columbia's capital, Victoria, is going. On the one hand, we had a gorgeous trip over on the ferry yesterday, and a fun time at the Royal B.C. Museum today. The girls have loved going swimming. Our hotel, the Harbour Towers, is a great place to stay as usual, and we ate delicious room service breakfast this morning.
On the other hand, last night we had uncharacteristically poor and spectacularly slow service at Milestones restaurant on the waterfront, which is usually one of our favourites. (In their favour, the manager gave us a $25 gift card to compensate.) My wife and I have both not been feeling too well, particularly today—me from intestinal side effects of my latest cancer drug. The weather today was miserable, extremely windy and sleeting.
Worst of all, this afternoon at the hotel pool, my eight-year-old daughter somehow gashed her chin open just before we were planning to dry off. She didn't even notice at first—her sister and I, surprised, asked her why she was dripping blood. So we have no idea how she did it, but after we returned to my wife in our room and got a bandage, we all piled in the car to a nearby medical clinic. The little one turned out to need stitches, which she was not happy about.
I hope things improve tomorrow, or at least that things don't get any worse once again in the evening. We really do like this city, usually.
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.
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.
So, how do I put this? The chemotherapy isn't working (at least, not well enough), so my doctors have cancelled it and we're looking for something else to keep the cancer from progressing. That may include different, more experimental forms of chemo, or surgical radiofrequency ablation (RFA) of the spots in my lungs. In my initial reading, the RFA approach looks like it could be promising.
My emotions about this development are all over the place. To know that the largest metastatic lesion in my lungs has grown from 1.4 cm to 1.6 cm in diameter, and the smaller one from 1 cm to 1.4 cm, is dismaying, because the panitumumab and irinotecan I was taking weren't doing the job of stopping or shrinking those tumours. On the other hand, I may have been misinformed about there being four metastases; there might be only two. I'm not sure and will have to ask. They are small, and not growing extremely fast.
In addition to that, now I can avoid spending two days in bed every two weeks, feeling like I'm going to throw up. My pervasive dry skin and facial rash, although under control, should now abate as the chemo drugs flush out of my system. Finally, since it will take a few weeks to figure out and schedule my next treatments, whatever they are, I'm taking the chance to try to have my ileostomy surgically reversed, so that my intestines function normally again for the first time in well over a year and I can ditch the colostomy bags forever. That could happen in less than a month.
We found all this out a couple of days ago, which happened to be my wife Air's 40th birthday. Fortunately, we'd already had a big family-and-friends barbecue last weekend to celebrate that (plus my mom's upcoming 70th), so the news only dampered the day itself, not the party. Last night she and I went for dinner at the beautiful Horizons restaurant here in Burnaby, to mark her birthday and to celebrate at least the end of chemo, for now.
This all reminds me that while my medical team and I keep looking for a cure, something to destroy the cancer completely, more likely we're just buying me time. How much time, no one knows. Months? Years? Right now, other than the dry skin, I feel better than I have at any time since my diagnosis in January 2007. I feel less like a dead man walking than ever, but the future remains a mystery.
Yet on September 11, another dreadful anniversary, the weather here in Vancouver is once again beautiful, and there's laundry to be done. Time to load up the iPod and get to it.
I realized a little while ago that's it's been well over a year since I felt any symptoms directly from my cancer. Since my surgery in July 2007, my main intestinal tumours (which gave me a lot of pain) have been gone; what remains are some small metastatic growths in my lungs.
Those are obviously bad, especially if they keep growing. But I can't feel them at all, even when I'm riding my bike, hiking around on top of a mountain, or otherwise exercising my lungs. Yes, I'm weaker than I used to be, and pretty tired a lot of the time, but the discomfort I've had over the past year has come from surgery recovery, chemotherapy, various medication side effects, and so on.
The doctors, nurses, and I are fighting off a deadly disease that I can't feel with techniques that I definitely can. So I'm lying in bed today, exhausted and nauseated, but that's from the medicine, not the cancer. It's necessary, essential even. But it's weird too.
First of all, before you read on here, please head over to Raul's and Rebecca's sites, as well as others who are doing 24 hours of continuous blog posts for Blogathon 2008 today. Raul, in particular, is raising money for cancer research, and so both my wife and I have contributed guest posts to his site. Here's mine. Read it and then maybe donate some money if you feel like it.
Anyway, we're coming to the end of our idyllic week here in Whistler (courtesy of my aunt and uncle who own the apartment), and I'm glad it's been generally restful, because the brand new rash on my face that has developed here (an expected and inevitable side effect of my new panitumumab anti-cancer drug) is harsh and brutal and it sucks.
The pimples and redness came on shockingly fast (as they are supposed to), mere days after I received my first dose of the drug last Thursday. They're worst on and around my nose and on my forehead, although they extend up under the hair on my head, down my neck, across my chest and shoulders, and onto my upper back. The rash looks pretty gross, and sometimes feels even worse. Bleah.
KA asked me how sensitive my skin is. The best description is that feels like a permanent sunburn, and my nose in particular feels like a big raspberry. Sometimes I'd like to take a belt sander to the entire front of my head, but no, I shouldn't squeeze or even scratch the pimples. The best I can do is the occasional gentle rub, and a wet washcloth from time to time. I do have hydrocortisone and antibiotic cream that I apply twice a day, and they help. The L'Occitane cream my wife Air got me also does some good, though it stings at first.
What's dismaying is that my face might actually look better smeared with white goop than it does without—the cream helps hide the rash itself. Until now, I don't think I've ever in my life been genuinely embarrassed by my appearance. I didn't have bad acne when I was a teenager, and while I've always been a nerd, I've thought of myself as a decent-looking one. Now I walk around Whistler and consider whether people are looking at my face and wondering what's wrong. When I buy something at a store, I have to remind myself to look people in the eye, because my instinct is to turn my eyes down and avoid a direct gaze.
But when I look in the mirror, I realize that while the rash does look gross (pimples, dry skin, little scabs, ew), it feels worse than it looks, especially from a distance, and I shouldn't be too self-conscious about it. And I'm sure glad my wife and kids are still willing to hang around with me.
Overall, it is extremely unpleasant, considerably worse than I expected. I'm amazed how quickly the rash came on after I started getting the medication—but the people at the Cancer Agency did warn me, and said that a serious rash is a sign than the panitumumab is doing its job. It's some nasty shit. Hopefully, it's even nastier to the cancer than to the rest of me.
I don't play drums as often as I used to—I did it as a full-time job in the early '90s—but I am glad I still get to do it for money on occasion. Last night my band, The Neurotics, played a wedding in Chilliwack, one of Vancouver's eastern suburbs.
And you know what? When you play drums only occasionally and get home at 3:00 in the morning, your hands hurt the next day.
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.
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.
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.
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.
I haven't written all that much about my cancer treatment recently, but that's not because things are winding down. Rather, it's simply grinding along as it has since mid-October. Every second Wednesday I go to the B.C. Cancer Agency, take some blood tests, maybe see my oncologist, and then sit in a chair for a few hours while various chemotherapy poisons are fed into my bloodstream. At the end, I'm hooked up through the same IV to a "baby bottle" of 5-FU chemo, which I take home and keep on for 48 hours.
Two days ago was one of those Wednesdays. In a way I'm lucky to have been an insulin-dependent diabetic since 1991. Needles don't bother me. That was good on Wednesday, because in the morning I took two different insulin shots, then had blood drawn for tests, then took some more insulin with brunch, then got plugged into the chemo drip, then had an atropine injection to avoid some side effects, then took more insulin at dinnertime, then took two more insulin shots at bedtime, then finished off with my daily blood thinner needle.
So what's that? Ten needles in one day, some to take fluids out of my body, others to put them in. Whew. And I'm not even counting the finger pricks I do at least four times daily to test my blood glucose. Lots of people don't get that many needles in a year. Today I get the bottle taken off, which is always a relief. (I can't get my chest wet while the chemo is on because of the needle taped to my body, so my Friday post-unhook showers feel amazing.) This will continue until at least late March.
If you met me on the street, other than my increasingly-scraggly hair, you'd be hard-pressed to know I was a cancer patient until I told you. Or unless I let you examine my fingers and inner elbows and chest for all the needle and lancet scars. So it's pretty hard for me to forget what's going on.
You know what's worse than having a hangover? Having a hangover when you didn't drink any alcohol. Last night my wife and I trekked to a pub in North Vancouver to see our pals in the Adam Woodall Band—I've played in other bands with Adam over the years, and also used to run the AWB website, so we like to see them when we can.
It was my first outing to a bar in a long time. We had lots of fun at the Queens Cross Pub, and the band was excellent, as usual. In addition to being designated driver, I'm still on chemotherapy, so it's not wise for me to get drunk. Indeed, I chose not to have any alcohol and all, sticking with Diet Coke and coffee, plus some fine Buffalo chicken wings and a steak sandwich.
Yet today I feel like complete crap. I woke up near noon with a headache, low blood glucose, body aches—all the symptoms of a hangover. So I'm paying the price, though I'm not sure what the price is for. The chemo makes me less resilient to staying out late than I used to be, I guess. Still, I'm glad we went.
Go buy the AWB's album Silver Ring, by the way. It's good.
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.
It's not all that likely that any of the long-term side effects of chemotherapy (fatigue, hair loss, numbness, etc.) will show up on the first day, so it's no big surprise that I feel fine tonight after a few hours of medication at the Cancer Agency, and now a slow-infusing "baby bottle" hookup for the next two days. Here's the bottle:
Here's me wearing it:
I did have a bit of reaction at the Agency, but rather than the worst-case diarrhea, I merely developed a slightly runny nose and clammy, sweaty skin, which Lisa the nurse quickly handled with some atropine injections. Oddly, my blood pressure was also quite low (105 over 50 at one point). The systolic value isn't strange for me, but my diastolic is usually more like 70 or 75.
I'm also not sure whether I felt nausea. I was a little bleah a couple of hours after dinner, so I took an extra anti-nauseant just in case, but so far I feel much as I did yesterday. We'll keep an eye on that stuff.
For today's wacky links, we have:
About 13 hours from now, I start a new six-month round of chemotherapy, my first such treatment since back in May. This batch is intended to try to shrink the metastatic tumours in my lungs that spread from the original cancer in my intestine, which was removed in July.
I'm having a whole new fun regimen codenamed "GIFOLFIRI," which involves irinotecan (Campto), folinic acid (Leucovorin), and our old friend 5-FU. No oxaliplatin as far as I can tell. The irinotecan is the nasty one this time around, with risks of hair loss (maybe, not for certain, but I don't care much) and possibly drastic diarrhea, which can be treated, but only about 15% of patients get it, so they don't give the antidiarrheals to everyone. They're also giving me bevacizumab (Avastin, an artificial monoclonal antibody) again to see if it can slow or reverse the tumour growth.
All of that is for the metastases in my lungs, of which I believe there are four, and which are still small and not growing too fast. (I've noticed no decreased lung function, although I haven't been doing really strenuous things such as bike riding like I used to.) I'm just not sure how I'll react, or how I will feel in a few days.
On a cheerier note, I've been enjoying these old TV theme songs (via JWalk), especially S.W.A.T. and of course the immortal Mission: Impossible (MP3 files). And crazy people who jump off mountains are fun to watch too.
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.
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.
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.
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.
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.
As I've mentioned, even six weeks after my surgery I continue to have some pain for which I'm taking codeine. This past Monday I had another CT scan, ordered by my oncologist Dr. Kennecke, to see if there was anything wrong.
Today I found out that there is something wrong, but in the scheme of things it is very minor and nothing to worry about, which is a great relief both to me and to my family. As Dr. Kennecke wrote in an email...
...there is a fluid collection beside the anastomosis and a fistula (a connection between the bowel and the fluid collection beside the bowel). Unless there evidence of infection, It does not look like this needs to be drained, as it seems to be draining itself.
So, depending on what his consultations with my surgeons reveal, it may or may not be useful to drain the buildup. But it's not a tumour—not more cancer, which of course was a worry. If all I need is a nasty needle to drain some fluid, I can handle that.
Funny how chemo and radiation and surgery and complications can make a potential fluid-draining needle seem like a small thing now. Last year a procedure like that would have seemed like a big deal.
I'm also pleased that my piped-in video appearance at Gnomedex went over so well with so many people, including Scott Rosenberg, someone whose work online I have admired for a long time. Organizer Chris Pirillo has some great things to say about his event overall:
Gnomedex is just about as close to a un-virtual blogosphere as I’ve ever seen it. [...] How does one attract the blogosphere’s thought leaders without hammering through the topics that are (quite frankly) already yesterday’s news—or completely irrelevant to people who don’t live and die by whatever is on TechMeme or its vertical equivalent? How does one equally attract those who are striving to become thought leaders, or those who love following those thought leaders?
One thing that makes Gnomedex worthwhile is that Chris, even just a couple of days afterwards, when he could just be sleeping it all off, is working hard to figure out how to make it better next time.
We've done a lot in the past couple of days—or a lot for me, anyway. Yesterday I not only visited the Pain Clinic at the B.C. Cancer Agency (where I got a prescription for some longer-acting codeine so I don't have to take Tylenol 3s so often), but then went for dinner with my family at the mall and got myself a haircut. We were out of the house for more than five hours, which is my longest outing since the beginning of July.
I paid for it later with some pain in the middle of the night, but it was worth it. Similarly, today we visited the Agency again, where I talked to a social worker and generally got some stuff off my chest. But a couple of hours away was enough today, and I had to come home and lie down once more.
But I'm gaining weight steadily, despite the fatigue, close to ten pounds already. The steps are small, but they are steps. It's like coming back to life, bit by bit.
As of today, it has been one month since my colon cancer surgery. It seems like much longer. In that time I have been in the hospital for a week, out for a few days, back in for another ten days, and now home again for a little over a week.
A community health nurse visited again today. He examined my bedsore, which is healing fine, and generally checked me out. He reminded me that healing and recovery will be very slow—that with my ileostomy, I am absorbing food less efficiently than before, and after my spring radiation and chemotherapy treatments, tissues take extra time to mend as well.
So it feels very slow to me, and I feel guilty sleeping much of the day, but the medical professionals think it is all normal. My body has been through a lot, and I am gaining weight gradually. Each day I try to walk a bit, and to eat heartily, so I will get better very gradually. I still do not feel or look like myself, but I will come back. I know it's hard on my family too, but it is reassuring to know that nothing is seriously wrong.
Last night my wife and I went out for dinner for the first time in about a month, since before my major colon surgery on July 6. It was both a success and a failure. Or, more accurately, it was a good test.
We hired a babysitter for a few hours and chose our nearby Cactus Club Cafe, where I had some delicious cheese toast, grilled salmon, and mashed potatoes. (I had to skip the rice pilaf because during my recovery I need to avoid high-fibre foods like brown rice and nuts of all sorts, which can create blockages.)
I also drank a pomegranate cosmopolitan martini and a mojito. Everything was delicious, and I had a great time, even though I still have to bring a pillow to sit on.
However, earlier in the day my surgeon, Dr. Phang, had prescribed me some Tylenol 3 pills with codeine to help alleviate some of the pain I'm still having. As I half-expected, just as we were paying for the meal, the combination of the two drinks and the T3s kicked in, and I felt extremely light-headed sitting at the table.
My fantastic wife knew what to do, of course. She told me to put my head down to my knees, which I did, and I immediately felt better. Then she went to the car and retrieved the wheelchair we borrowed from my parents yesterday, and wheeled me out of the restaurant. I lay down in the back seat of our car and we drove the three minutes home, skipping our planned trip to the mall. Instead I went to bed and watched TV. Later we watched The Bourne Identity and I made some plans to give a remote video talk to the upcoming Gnomedex conference next week.
I didn't find what happened at the restaurant at all embarrassing, by the way. I'm way past embarrassment at any of this stuff. It was an experiment, in a way—what are my limits right now? I know I can eat a good meal in relative comfort. I know the Tylenol 3 works. And I know it does not interact well with booze (though I was pleased not to feel nauseated). So I should lay off the drink for now, at least if I plan to stay upright.
It was a damn good martini, by the way.
Last week, when I had a nasogastric tube on my face to drain my stomach, the clip that held the plastic hose accidentally injured my nose. I was still on morphine at the time, so while it felt like I'd been punched in the face, I didn't really care.
A couple of days later, when we removed the bandage, the nurse who'd put it on was a bit horrified (and quite apologetic) at what had happened. Today the last of the scab fell off, and now I have a couple of nice craters in my nose:
So now I look like I've been punched in the face too. Battle scars!
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.
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.
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.
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.
On bad days, like today, I feel like nothing but a generator. The only things I generate are pain and shit, and I pour them into the world—as if the world needs more!—spending the rest of my time sleeping, and eating when I can, and in today's case intermittently reading a book while lying cramped up in bed.
It doesn't seem fair. Yesterday was a great day, when I played drums with the band for the first time in six months, and had a wonderful time, and went to bed feeling good. But then today I was a total wreck, unable even to unpack my snare drum from the car, or read my email, or open the mail, or answer the phone. Or maybe that is fair: good day, bad day. But fairness is a human concept, and a disease like my cancer knows nothing of it.
I hope tomorrow is better. It almost has to be.