Results tagged “chemotherapy”

Ungainly

Garay Christmas Jam 8Back in November, I complained that I was too thin, after the punishments of my last two types of chemotherapy reduced me to 163 lbs (74 kg). But in the weeks after that, despite stopping chemo altogether, my weight continued to drop. It has been as low as 149 lbs (68 kg), only a few pounds more than my all-time adult low of about 145 after surgery back in 2007.

I've plumped up (ha!) slightly since then, but even today I'm only 155 lbs (70 kg), despite trying to gain weight since December, and I don't seem to be packing on anything more. I can eat, but not as much as I used to, and I continue to have regular diarrhea and occasional vomiting. My digestive system is simply less efficient than it should be. It's harder to enjoy food than it used to be, though I'm glad I still do. Many of my clothes don't fit properly. I've had to notch in some of my belts. In the mirror, I can count my ribs and some of the vertebrae in my spine, and see too much of my cheekbones and jawline. I'm frequently cold, which was rare before—spring and summer will be a blessing. Sitting on hard surfaces is uncomfortable.

These are no longer chemo side effects, simply a few of the many symptoms of my growing cancer. Perhaps the tumours near my spine are interfering with the nerves that control peristalsis in my gut. Or maybe they are more directly obstructing how food passes through my digestive tract (though I've had genuine blockages before, and I'd know if that were happening). Or maybe it's something else.

Whatever's going on, it makes me weak and tired too. Late last year I finally relented and acquired myself a disabled parking tag. While I don't currently use a cane or wheelchair, I've often needed it. I'll drive to my pharmacy, or the mall, or some other location, and then sometimes sit in the car gathering the strength to cross the parking lot to my destination. On those occasions, if it were busy and I had to park far away, I'd likely give up.

When I have a bad day, I never know whether the next one will be better or whether it's just a new point on the way downhill. Similarly, while my weight seems stable now, it's also possible that I could be wasting away quite slowly. On average, I'm certainly less capable than I was a month ago, and a month before that. It's simply a pattern I face now.


Compiling 2010 and a couple of entries from 2011, this concludes my links to every cancer post I've made on this blog over the past four years. See part 1 (2006–2007), part 2 (2008), and part 3 (2009) for the rest. 2010 began optimistically, with my tumours shrinking, but by the end of the year they were growing again, and I'd run out of treatments. I may not live long enough to blog the end of 2011.


January 2010:

February 2010:

March 2010:

April 2010:

May 2010:

June 2010:

July 2010:

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September 2010:

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November 2010:

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January 2011:


Four years of cancer blogging, part 3 (2009)

Following my list of cancer blog posts in part 1 (2006–2007) and part 2 (2008), this batch covers 2009. By then, I was coming to realize that my cancer wasn't going to be cured. At best, it seemed, I might be able to manage it as a chronic condition long-term, perhaps. And that's what I did for much of the year, taking cediranib daily and managing the awful intestinal side effects, until that drug stopped working, and I moved back to more traditional and awful chemo.




Again, see Part 1 (2006–2007) and Part 2 (2008). Part 4 (2010–2011) finishes off the link series marking four years since my cancer diagnosis.


Four years of cancer blogging, part 2 (2008)

Here is the next batch of my complete index of blog posts about my cancer and treatment. Part 1 covered 2006 and 2007. This one comprises 2008, with part 3 rounding up 2009 and part 4 finishing off with 2010 and a bit of 2011.


June 2008:

July 2008:

August 2008:

September 2008:

October 2008:

November 2008:

December 2008:


In the exactly four years since I found out I have cancer, this has not been exclusively a cancer blog, but I have written a lot about it. Since you probably missed some (and also because I've forgotten much of what I wrote), I'm listing links to every post I've made on the topic. Let's start with December 2006 (when I didn't know what I had) through December 2007. See part 2 (2008), part 3 (2009), and part 4 (2010–2011) too.


December 2006:




January 2007:

February 2007:

March 2007:

April 2007:

May 2007:

June 2007:

July 2007:

August 2007:

September 2007:

October 2007:

November 2007:

December 2007:



More of the archive in part 2 (2008), part 3 (2009), and part 4 (2010–2011).


It is time for winter

I plan to post about non-death, non-cancer things again soon. But first this. My wife Air wrote something amazing on Facebook a couple of days ago:

It will all be OK. No more grueling chemo. Think of a tree in fall—beautiful and full. But then its leaves start to fall down. Trying to tape them back on to extend the tree's beauty is futile. Standing out in the cold and holding them up to the tree is exhausting. It is time for winter. Enjoy each season.

I wrote 35 paragraphs about my prognosis in my recent two posts. She did it better in one.


The endgame

End GameIn the next couple of years, about 100 million people will die around the world—of old age or other natural causes, in accidents, of infections, from pathogens or poisons, in wars and terrorist attacks, from congenital defects, in fights, of suicide, in natural disasters, from medical errors, of exposure, by misadventure, by assassination or murder, and of various diseases and conditions. Between 10 and 15 million of those people will die of cancer. Today I'm telling you that I'll be one of them.

It's good that Thursday, November 25, wasn't Thanksgiving Day in Canada (it was in the U.S.), because that's when I found out. Doctors are notoriously reluctant to predict life expectancy, and for good reason—they're often wrong. But, with my wife Air in the exam room at the B.C. Cancer Agency with me, I drew it out of my oncologist, Dr. Kennecke.

"Do you expect I'll still be alive to visit you here in two years?" I asked, straight up.

"Honestly, no," he said.

There was more to it, of course, but that was the moment. It was no surprise. It's why I had asked Air to come along—she hasn't needed to join me for a doctor's appointment in a long while, but this week I needed her there.

How do I know?

My chemotherapy isn't working anymore, and after almost four years of different cancer treatments, standard and experimental, I've run out of new things to try. My tumours are still growing in my lungs, chest, and abdomen, so this week my doctors and I have agreed that I'm going to stop taking the drugs. I've probably got about a year before I die, give or take.

I discovered I have cancer at the beginning of 2007. Since at least 2008, it's been clear to me, after radiation, surgery, chemo, and everything else, that none of the treatments was going to destroy it or cure it. I've never been in remission, and with every CT scan and blood test it's been plain that the number and size of the metastatic tumours in my body has nearly always continued to increase, slowly and steadily. The direction of the arrow has been obvious—to me, to Air, to our two daughters—for a long time.

Chemo is never easy. Coincidentally, I discovered a couple of days ago that it was first developed from World War I bioweapons like mustard gas. Since late this summer, the latest cocktail has certainly felt like that. It's been brutal, probably doing more harm than good, not poisoning cancer cells any more effectively than it hammered the rest of my tissues. That led to side effects I'll be glad to reduce, and the weight loss I complained about last time I posted here.

My body is broken and failing. Precisely how long it will hold out, no one knows. But it won't be very long.

What happens now?

Importantly, I'm ready to accept it: I need to prepare to die. That's not giving up, it's facing reality. Anyone who knows me well, or who's read this blog for any time at all, knows I prefer to do that than to be deluded or in denial.

As lifespans have soared, our society has become lousy at dealing with death. I regularly receive emails from people I don't even know, who seem desperate to tell me about a very specific miracle treatment that I simply must take. They have good intentions, but it also feels to me like they refuse to believe that an otherwise fairly healthy 41-year-old man can get cancer and die, and there's ultimately no way to stop it. It seems to offend how some people understand the world.

Yes, I've looked into the options those people suggest, and the evidence for their effectiveness just isn't there. Many of the purported treatments would bankrupt my family and further disrupt our lives, almost certainly for no good purpose. The truth is that I have cancer, and it's going to kill me, soon.

I don't yet know exactly how things are going to go. The Cancer Agency has teams of people to help once patients (and our families) determine that we're terminally ill. I'll need more pain medications with time, and stronger ones. Since most of the cancer is in my lungs, I'm guessing I'll need supplemental oxygen eventually. At some point I may have to move into a hospice or check into a hospital permanently.

I don't play chess, but it includes the useful concept of the endgame, when tactics and strategies change because the remaining pieces are few, and the players know the game is almost over. That's where I am, so I know a few things.

As I predicted, our dog Lucy will outlive me. This might be my last Christmas, or I might see one more. I may or may not reach my 42nd birthday next June. I've probably bought my last car and pair of eyeglasses, but my final carton of milk and cup of coffee are some way off yet.

Facing my own death isn't easy. It's tremendously hard for my immediate family, for my parents, for my aunts and uncles and cousins. It may be harder for them than for me—after all, I know I won't have to deal with the aftermath. I'll be dead, and they'll be alive.

Still, I've had a lot of time to think about death and dying since the beginning of 2007. My wife and two daughters—my three wonderful girls—have talked a lot with me about it too, and we'll keep doing that. I'm not ready to die just yet, but I'm ready to prepare for it.

Off we go.


I'm too thin

Derek and GinsbergThere were lots of odious things about Wallis Simpson, the late Duchess of Windsor, but one of the most odious was her most famous quotation, that you can "never be too rich or too thin." We can argue about being rich, but she was wrong as hell about being thin. This year I've once again become too thin, far too thin.

After my most recent chemo treatment last week, my bathroom scale weighed me in at 163 pounds (about 74 kg). That's not the least I've ever weighed—check me out at a skeletal 145 pounds back in July 2007, after a few weeks in hospital following bowel-cancer surgery, and being unable to eat or even drink for several days at a time—but it is far too little.

For most of my adult life, I've weighed about 200 pounds (90 kg), give or take. I never worried about my weight one way or the other. I made it as high as 215 when I was really trying to pack it on in 2008. My ideal healthy weight is probably around 190, so right now I'm close to 30 pounds too light, and 12 pounds lighter than I was when I went in for that surgery in '07. I'm on the verge of what happened back in the post-hospital days later that month, when I found it hard to recognize the skinny bastard in the mirror.

The problem is threefold: First, I'm finding this current bout of chemotherapy especially brutal. I have very little interest or ability to eat in the three or four days after I get my treatment every two weeks, with nausea, fatigue, and general relentless blecch-ness. What I do eat, I might very well puke up. Second, even after I feel a bit better towards the end of the week, my appetite and the quantity of food I can consume are quite reduced from what used to be pretty normal voracious Derek levels—and I'm still likely to barf up a meal at nearly any time, out of the blue. Finally, I suspect my digestive system is working less efficiently than it used to, so I'm not absorbing nutrients as well as before.

My diabetes, which I've had for almost 20 years, doesn't help, since I can't just suck back banana splits at a whim. I still have to manage my blood glucose and eat carefully when I do feel up to it. I sometimes have to force myself to eat more than I really want—definitely a new experience for me—and that can backfire. Last night I had a few too many delicious perogies with sausage at dinner, and ended up heaving about a third of them back up later in the evening. But earlier in the same afternoon, I had eaten a big truck-stop sandwich with hash browns and a milkshake, and digested it without trouble. I want to eat and food is still delicious, but my body's reaction is hard to predict.

I have a couple of packs of Boost diabetic dietary supplement drinks in the fridge, and those help somewhat, though they're not the tastiest (the strawberry is okay, especially blended with crushed ice), and so are no good during my actual chemo-sick days. Strangely, sometimes I get cravings at the most peculiar times, and am happy to give into them: the very day I had my last chemo treatment a week ago Monday, I wanted a White Spot clubhouse sandwich at dinnertime. My wife Air got me one while out for supper with the kids, and I ate the whole thing. Shockingly, it stayed down. But I hardly ate again for the next two days.

I don't know if this is mostly a consequence of the chemotherapy, or whether it's more that my cancer is now, after four years, directly affecting my ability to eat and metabolize food. Likely it's some of each. Right now, in bed, I can feel the vertebrae at the nape of my neck. I have to buy men's size small T-shirts and sweaters, and even some of those are loose. Most of my jeans would fall down without a belt that's had extra holes punched in it. I'm really noticing our recent Vancouver cold snap, since I lack body-fat insulation, and sitting on hard surfaces can hurt because of my MPAL (Male Pattern Ass Loss).

Can I gain back some weight, or at least stabilize it? I don't know that either. I'll keep trying, one Boost and clubhouse and plate of perogies at a time.


Big biweekly butt blowout!

The usual "perhaps too much information" warning applies to this post, if you're not fond of tales about bodily fluids. Last month I wrote:

The pattern has become this: roughly a week after I first receive the chemo dosage, my body decides to purge everything out of my gastrointestinal tract.

It's actually remarkable how consistent that pattern has become. Irinotecan, the main drug in my current chemotherapy cocktail, has diarrhea as its primary side effect. But you'd figure, as with most drug side effects, that would happen pretty much right away after I first take it.

Not for me. I have chemo every 14 days. Almost exactly a week (in my four treatments so far, either six, seven, or eight days) after my treatment begins, what arrives is an event I now call the Big Biweekly Butt Blowout. I had chemotherapy last Monday, November 1. Last night, November 7, with little warning, things got started around 6 p.m., and I was able to leave our downstairs bathroom around 8:15. As my guts calmed down over the rest of the night, I was able to get to sleep before midnight.

Of course it sucked, and I'm sorry my family had to listen to me barf up my dinner. But I quickly realized what was going on, and having been through it three times before, I knew roughly what to expect, as well as what I needed to do to ride it out. When I went downstairs with a few supplies, I told my wife, "I'm heading down to the bathroom. I'll probably be there for a while." I was quite right.

While I'm tired today, things are better. I had a late breakfast. The dog has been her usual great snuggler. If the rain continues, I'll meet the kids after school to give them a ride home. This week should be an improvement, before I get started with the process again next Monday.


Welcome back, Morpheus

Back in 2007, before I had my big cancer surgery, I was taking morphine tablets a couple of times a day. As of yesterday, I am again—quite possibly indefinitely. It's because of that pain I've been having in my torso, which so far has no obvious source, but which I'm guessing is simply the result of my ever-growing tumours. In recent weeks it's been keeping me from going to sleep easily, or waking me up in the night. I was taking too many Tylenol 3 and Advil pills. For someone like me, morphine is a better and safer painkiller.

The drug is pretty amazing stuff, really. When I had my last partial bowel blockage in 2008, it was excruciating. But a single injection of morphine abated the pain within minutes, and was able to keep it at bay in hospital while I waited for my body to clear the obstruction. So far the low-dose, twice-daily pills are working well against my current pain, and I have shorter-acting tablets I can take if things act up in between.

The team at the Pain Clinic yesterday also prescribed me Zopiclone, a sleeping pill, in case I needed it. Last night I tried half a tablet because the morphine hadn't fully kicked in by bedtime, but so far I'm not a fan. I've been in a zombie-like state most of the day, much more so than my usual chemo-recovery Thursday. I'm certainly in no shape to drive or operate heavy machinery. Or light machinery, for that matter. I'll keep the sleeping pills in reserve in case I really need them. But I think I'll sleep fine just reducing the pain first.


A return to bleah

How I feel about going back to chemo todayFor the first time in a month, I'm going back for more chemotherapy this afternoon. Dread is hardly the word to describe my state right now. Even after a couple of extra weeks off from the treatment because of that nasty blood clot, I still don't feel well.

I continue to have back and torso pains that move around, requiring painkillers (mild ones, so far), and which have sometimes kept me awake. The only appointment I could get at the B.C. Cancer Agency Pain Clinic is on Wednesday, when I'll still be in pretty sad shape from the chemo—but I need to go to help manage my symptoms. My intestinal tract is still periodically misbehaving itself, which is never fun. I'm often weak and tired, and though the scale tells me I haven't lost more weight, I'm still too skinny, but I can't eat as much as I used to either because of the above-mentioned problems.

That said, Halloween was fun yesterday: my wife and daughters and our friend The Badger wandered the neighbourhood collecting goodies, while I manned the door here at home. We had a pretty big mob of kids, though because of a larger-than-usual candy purchase, we still have lots of supplies left over. My youngest went so hard at the trick-or-treating that she didn't wake up till 9:30 this morning—I'm working to get her to school for lunchtime. I had fun setting up a new (to us) iMac I acquired from Alistair. The 24" screen is huge in our kitchen.

The next few days are going to suck for me and for my family. You'd think we'd be used to it, but no. Cancer doesn't give us even that luxury.


Another eyeDuring my brief stay in hospital before the weekend, I had been afraid that my major diarrhea side effects from chemotherapy would kick in while I was there. They didn't, which was fortunate. They waited until last night.

My medical team tweaked my last chemo treatment on October 4 to try reducing this particular side effect, but that made no difference. The pattern has become this: roughly a week after I first receive the chemo dosage, my body decides to purge everything out of my gastrointestinal tract. Yesterday, after a perfectly decent day limping around on my still-swollen leg, helping my kids with homework and school projects for next week, I headed down the hall about 7:45 p.m. for a routine trip to the bathroom, but then I couldn't leave.

Good thing the kids had TV and video games, as well as the initiative to make one of our beds and load the dishwasher. I didn't see them for awhile.

Clear it out

I was in the bathroom for four hours, on the toilet, lying on the floor in various positions to try to relieve gas pressure, in the shower with hot water pouring on my back to reduce cramps, and so on. I puked up my dinner as part of the process. My wife Air came home from an evening out and brought me a cold glass of water and a couple of tablets of Imodium to try to slow things down. I took them and then immediately barfed them up again—the first time in my life I've ever thrown up ice-cold vomit, which was weird.

Eventually, everything slowed down on its own, once there was basically nothing left in my guts to purge. Around midnight, I came to bed (only then noticing that yes, my left leg still hurts from the blood clot, but perhaps a bit less) and lay there shaking. I got some Imodium down, as well as some Tylenol for my entire lower abdomen, which by now was achy and sore. I had to pop back to the bathroom a few times during the next three or four hours as well, but I got sleep in between, especially after I took an Ativan to calm my by-now-jangly nerves.

Our dog Lucy, who sleeps between my wife and me on our bed, was repeatedly freaked out by the growling monster noises emerging from my belly under the covers. She almost barked at them once.

A long night

I slept till almost noon this morning, and I feel tremendously better. Tired, yes, but my insides feel much more normal. Even my leg, which I'd almost ignored through the ordeal, seems less swollen, though I'm still limping when I walk on it—so it improved while I was distracted. I ate some cereal—the first food to stay in my system for about 17 hours. I'm hoping to make it to a family Thanksgiving dinner this evening, though I'll probably be pretty subdued.

It's been quite a week:

  • chemotherapy
  • three days of recovery
  • an unexpected blood clot leading to an emergency hospital admission
  • a return home with a gimpy leg
  • a full night of intestinal chaos

It sucked, for me and for my family. It was hell and torture—as in, if I had to do this stuff for a long time, it might just drive me off the deep end into raving, pain-and-nausea–induced insanity. It was bad.

Right now my instinct is to postpone my next planned chemo, scheduled a week from today. I want to recover.


Popeye's leg

Yesterday morning, I felt all recovered from this week's chemo, only to find my left leg mysteriously swollen. It also hurt to walk on. After the kids left for school, I saw my doctor, who immediately sent me to Vancouver Hospital for an urgent ultrasound.

It was good he did, because my swollen leg turned out to be the result of a nasty blood clot. So I'm in hospital for a few days and will continue taking blood thinners when I get out. Clots like this are a risk with my colorectal cancer and chemo, unfortunately.

Thanks for all the kind messages on Twitter and Facebook. So far hospital food is surprisingly decent (lunch was a tasty frittata with soup and an excellent little salad), I got a private room (even my own small washroom), and I'm feeling okay.

Right now I'm restricting visitors to family only, since I'm still pretty tired. But I'll keep you posted.

UPDATE: I'm home already, the same night. Once things got under control the hospital felt it safe for me to leave after dinner. I'm back taking daily Fragmin (dalteparin) injections—the same stuff I used to take (and should have kept taking, it seems!). And I'm still hobbling around while the swelling subsides. It's good to have a bath at home and go back to the big comfy bed. I missed my wife and kids and puppy, even in a short absence.


Open up the sluices

You'd think I'd be able to predict my chemotherapy side effects fairly well by now. After all, I've been at it for three and a half years. I thought so too. But oh no. (This post will officially count as Way Too Much Information for some of you, particularly if you're squeamish. You've been warned.)

A week ago Monday, September 6, I had my first chemo treatment after a six-week break, and as expected, I felt like crap for a few days afterwards, then started to recover. I had a few random episodes of vomiting, as well as intestinal cramps, but again, those were nothing new. Then, a couple of days ago, more than a week after my treatment, I was suddenly hit with tremendous diarrhea, coupled with puking up my entire lunch into the downstairs bathtub, and violent cramps that extended from mid-afternoon well into the evening. Eventually things calmed down with some medication and time. But even yesterday I was still a gassy, wincing mess.

Today seems better, and there's no indication I'll be in the bathroom for hours again. I've even been eating well. The intestinal chaos is, unfortunately, an expected side effect of irinotecan, but the week-long delay before it happened was a total surprise to me. I'll have to see if there's a similar pattern next time, and I also have to make sure that I keep anti-diarrhea medicine handy at all times if it remains unpredictable. Unfortunately, I've also lost about ten pounds since before the chemo, and I have to try to keep the calories in to maintain my weight. Wanting to avoid the horrible Boost and Ensure drinks I've occasionally had before, I'm just working on eating good, substantial foods I can tolerate.

There was one funny consequence, however: near the end of the ordeal on Tuesday evening, as everything was clearing out and I was lying sweaty and exhausted on the bathroom floor, I had a single fart that lasted at least 30 seconds, perhaps 45. Despite my horrible condition, it made me laugh out loud.


Living in dog years

Freshly groomed puppy (oh, and me)Only once in the past three and a half years, since I found out I had metastatic colorectal cancer that had spread to my lungs, have any of my doctors said anything about how long I might live. At the beginning, my oncologist Dr. Kennecke noted that the median survival for patients with my condition is two years after diagnosis.

That was, I repeat, three and a half years ago. You might think that he predicted I had about two years to live, and was simply (and happily) wrong. But that's not even what he was saying. Because he used the word median, he meant that two years after diagnosis, half of patients with metastatic colon cancer are still alive. Therefore, in 2007, my chances of living more than two years were about 50% (assuming I was a typical patient—more on that below).

And he was right about that, since I'm still here. However, if I'd died within two years instead, he'd still have been right, since I would have been in the other 50%. You can see why doctors like using medians for survival prognoses!

Woe to the prognosticators

According to Slate, doctors are very, very reluctant to make any predictions about how long a specific patient will live, mostly because they're notoriously bad at it, unless the patient is pretty much at death's door—within days or hours of the end. In part that's also because they don't learn how:

[In] major medical textbooks that have been used by medical students (and practicing physicians) for decades [...] the relative percentage of space for each disease entity devoted to prognosis diminished with each subsequent edition, often to a paragraph or less. [Doctors] focus almost exclusively on the ever-expanding sciences of diagnosis and treatment, leaving prognosis almost entirely to the side.

But it's also difficult to predict correctly, especially for someone like me. A typical colon cancer patient is over 50 (maybe decades over), often with a family history of the disease, and perhaps other health problems that go with advancing age. I got the disease in my mid-30s, with no family history of it—and, later testing showed, no known genetic predisposition either—as well a relatively healthy body otherwise, despite having type 1 diabetes since 1991.

So my personal chance of survival two years past diagnosis was probably higher than the median, even if no one knew by how much. Plus my cancer team has felt it worthwhile to try all sorts of semi-experimental treatments, for which more typical patients might not have been eligible. And they've been willing to subject me to fairly high doses of chemotherapy—of which I'll get more on Monday—that I'm guessing might kill someone in more fragile health.

Time is not infinite

However, all that doesn't mean I'm likely to live an 80-year lifespan like your typical newborn Canadian in the 21st century. I've seen the CT scans, and I've watched my cancer progress slowly but relentlessly over the past few years. It's never been in remission, not once.

When my doctors talk to me about my treatments, they never use the word cure anymore. When they see a treatment as successful, that means it has slowed or stopped or maybe slightly reversed the growth of my tumours for a few months, or perhaps a year. Success means buying me time, extra months or perhaps years, but almost certainly not decades—unless, during those extra months, some remarkable new treatment becomes available, and it works for me.

I can hope for that, but I can't expect it. I'm 41 now. My own estimate, not made scientifically, but as an educated guess, is that I'll be pretty lucky if I reach 45. I'll be absolutely astonished if I celebrate my 50th birthday in 2019, and that's what I tell people now. (I was a little bit surprised to reach 40 last year.) The chances are pretty good that—in addition to my wife Air and my daughters and almost all of my friends—my parents, my aunts and uncles, and even our pup Lucy will outlive me. In other words, I'm living in dog years.

Like that initial median estimate, those are all probabilities, not certainties. There's no guarantee that my cancer will kill me within the decade, but being reasonable and realistic means I have to treat that as the most likely result, and live (and plan) accordingly. That's not easy to do, especially for a procrastinator like me, but there it is.

By the way, most of you will have to do the same eventually, but with any luck not until your 70s or 80s. My time is probably briefer than most, and I don't like that. I'm not okay with it. But I can live with it. Woof woof.


There are always new places to vomit

This afternoon I puked onto a CT scan machine, which is a first. In fact, before today I hadn't vomited in weeks, since the unfortunate incident on the Ferris wheel at Disney's California Adventure—and that's because I haven't had chemotherapy since early July.

But this Monday, Labour Day, I'm back at it, more chemo, and as usual I'm getting anxious. However, I'm not usually that anxious. I didn't barf when I had blood tests on Monday, and I had no reason to think I would today as I went for my scan. But there I was, lying down and being motorized into the giant donut of the scanner, and I said to the technicians, "I'm feeling nauseated right now. I don't know why. I think I'm going to throw up."

And so I did. They brought me one of those useless little cardboard trays that might handle the stomach contents of a small bird. Then another. Then we switched to a big trash can. It was all over very quickly. I'd lost the salad and sandwich I'd had for lunch. The techs had to slice off the right sleeve of the surgical gown I was wearing, since I already had an IV in my arm but the gown was a mess. I threw away one pair of underwear, but luckily I had another. My white T-shirt wasn't entirely spared, but with some wet towels I cleaned it off well enough.

The technicians said, "You'd be surprised how often that sort of thing happens," then they chucked a bunch of the soiled linens, replaced them, and cleaned up the floor and scrubbed the impenetrable face of the scanning machine. Just like that, the room was spotless again. Then they got me to lie down and we proceeded with the scan. I doubt anyone in the waiting room knew what just happened as I left, feeling much better.

Now, I had a rough night last night, with lots of intestinal problems that kept me up until 3 a.m., and those resumed this evening in a slightly altered form, though they seem to be calming down as we approach midnight. They seem slightly different from the similar problems I've had, in some form or another, since even before my cancer diagnosis in 2007, so I may have a mild infection. Thus, I don't know if this great big hurl came from nervousness about my upcoming chemotherapy, an intestinal bug of some kind, or a combination of the two.

But I reiterate my admiration for the consistently high spirits and good natures of the staff at the B.C. Cancer Agency. They laughed it off, as I tried to do, cleaned up both their facility and me, and got back to their jobs as soon as they could. No one's yet been able to cure my cancer, and quite likely no one will, but I drove home feeling unembarrassed, and that's pretty amazing in itself.


Enough for now

Despite going to and having fun at a couple of big parties this past weekend, I wasn't feeling good. Saturday night in particular was unpleasant. I had an ache on the left side of my back reminiscent of a similar pain I felt last year, which by all accounts was probably a relatively minor intestinal problem. Unlike a year ago, however, sitting up in bed didn't help, and I slept very little. By Sunday morning, when I took some Advil and ate some food, the pain subsided and I was able to nap in our hammock for an hour and a half, which kept me going for the rest of the day. And last night was better, though I still have a bit of an upset stomach this morning.

These are complaints, part of the territory of having cancer and getting a bit older. But I know that eventually I'll develop one of those pains and it won't go away, because it won't be something simple or minor. It's strange to say, but I've been relatively lucky because, since my major cancer surgery in 2007, the pain and discomfort and nausea and other symptoms I've suffered have been mostly from my treatments, not from my disease.

However, I'll be heading into yet another round of throw-it-against-the-wall-and-see-if-it-sticks chemotherapy in September. That's happening because my previous chemo wasn't working anymore, just like the treatment before that wasn't, and the one before that, and so on. (There have now been so many I've lost track of them.) Even if this new regimen is effective, given my experience over the past three and a half years, it's not likely to stay that way in the long term. And as far as I know, there aren't many other options beyond it.

The cancer I have, spread through both of my lungs, doesn't tend to go away. It's too widespread for surgery or radiation, and chemotherapy and other systemic treatments have merely slowed it down or shrunk the tumours temporarily. It's possible, though rather unlikely, that some upcoming treatment will really beat my cancer back. But success in a case like mine is almost always measured in extra years of life, not extra decades.

So I've been packing in the fun this summer: Disneyland, Whistler, the beach, weddings, parties, geek conferences, and more. That's because someday—likely not especially far off—I'll develop symptoms that are from the cancer, that won't subside, and that will need management. For at least a couple of years now, whenever I feel pain of any kind (unless it's from something obvious like whacking my shin on a table), I wonder if it will be that one, the one telling me something in my body is failing. I wondered that on Saturday night, but the pain went away, so perhaps it wasn't one to worry about that way, not yet.

Am I okay with this situation? No, I'm not. It's fucking stressful. It sucks for me, for my wife, for my daughters, for the rest of my family, and for my friends. But I think I have come to accept it. More accurately, I have had to come to accept it.

So today, I can still walk the dog and buy some groceries, enjoy some food and the hot summer weather. I can move, and laugh, and appreciate the day. It's enough for now.


Tumours growing again

Since February or so, the aggressive, high-dose chemotherapy I've been taking since last December was shrinking the tumours in my lungs, an encouraging trend. But now, not so much.

In the three and a half years I've known I have cancer, I've come to expect a certain result whenever I meet with my oncologist Dr. Kennecke about a CT scan: after 16 or 17 of those scans now, I know that most often, my tumours have grown a little, not a lot, and there may be one or two new little ones. That's my default position going in, before I know anything. If things are better, I'm happy. If they're worse, I'm sad. But if that's roughly the result, I may be disappointed, but I'm not crushed, as I might be if I were a relentless happy-happy must-think-positively type.

And that was roughly the result this month. I had another scan a few weeks ago and met with Dr. K. at the B.C. Cancer Agency this past Tuesday, the day after returning from my family trip to California. As usual, things have grown a little in both lungs. Nothing has spread to any other organs, and there's no change in my left kidney, which has been slightly wonky ever since my major surgery back in 2007, when my surgeons managed to save it instead of having to remove the kidney altogether.

The growth is enough that Dr. K. thinks the current chemo is no longer working. Somewhat like antibiotic drug resistance, chemotherapy drugs often become less effective over time in patients like me, who take it over the long term. (Coincidentally, in fact, CBC Radio's science show "Quirks and Quarks" recently rebroadcast an excellent program from last October, which describes the phenomenon in the context of new treatments that allow people—again like me—to live with cancer as a chronic disease.)

Essentially, a particular chemo regimen poisons and kills cancer cells that are susceptible to it. But cancer is a disease of mutation, and there may be mutant cells left over that can resist the poisonous effects of the drugs. As the poisoned cells die, the more resistant cells can come to dominate, and then grow more tumour tissue, requiring a change to different drugs to poison them.

So that's what comes next. We're discontinuing my current three-drug cocktail of 5-FU, oxaliplatin, and leucovorin (known together as FOLFOX), and will replace it with another drug (which, like FOLFOX, I tried previously some time ago), called irinotecan, perhaps in combination with other agents. This is sucky news, yes, but as I mentioned, it's the kind of sucky news I expect and have encountered many times in the past few years—indeed, I've lost track of how many different drug combinations I've tried by now. For me, it's more a bummer than a crisis, though it's harder for the rest of my family.

There is one big, nice benefit. Dr. K. recommended that I let my body—especially my immune system—recover a bit from the FOLFOX treatments before I start the new stuff. So I'll have no chemo until after Labour Day, about six weeks away. I can enjoy the end of summer without being laid out in bed for three days every couple of weeks. Maybe, with luck, my oxaliplatin-induced neuropathy will abate somewhat too.

When I'm supposed to be taking things one day at a time, six weeks of summer in one of the world's most beautiful cities, and feeling what's likely to be somewhat better, is an unexpected bonus.


Fiddly fingers

I've mentioned before how one of my current chemotherapy medications gives me peripheral neuropathy, where my fingers and toes are numb and tingly. Most of the time that's not too big an issue—it's annoying, not painful, and I can still do most things I like to do. Typing is fine (though I may be a tad slower than I used to be), the buttons and dials on my cameras are still easy to operate, and even playing guitar is okay, since I was no shredding speed demon on the fretboard to start with.

However, tasks requiring really fine motor control are difficult. For instance, the other day my daughter Marina asked me to help her put on a necklace, with one of those super-tiny lobster-claw fasteners in the back. While I could get my thumbnail under the catch, I didn't have the precise feeling in my fingertips to get the tension just right, to keep the clasp open yet not have my finger slip right off. I had to ask my wife Air to help instead.

Similarly, peeling labels off their wax-paper backing and even opening the pop-tops on soda cans are now clumsy manoeuvres for me. When opening a Diet Dr. Pepper, I now usually resort to prying the pop-top up with a butter knife or a car key, then using my fingers once there's some good leverage to open it the rest of the way.

I'm not sure how much worse it's going to get, or what else that was once easy might become harder. Some people have suggested treatments such as acupuncture which might reduce the numbness. I might try that if the neuropathy becomes at all debilitating. It's the end for any aspirations of my being a neurosurgeon, anyway. Good thing I never had those to start with.


Down the hole

More chemo today, so expect little posting here for a day or two or three.


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