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April 2011 Archives
Today my voice returned,
after more than two months. Some tight scheduling in Coquitlam
prevented a planned appointment here, so my dad, Air, and I drove to
Surrey.
There, an ENT doctor injected one side of my vocal cords while his colleague manned the nose cam to view the process from the inside.
The result, so far, is a partial return of sound. My right cord is quite calcified, the doctor says, and may never firm up completely. So I have, for the moment, a voice whose pitch I can't control, but which might get better. It's louder, which helps my dad. It isn't whispery or raspy, which helps everyone else. It does the job.�We'll hear if it improves, which should be good for the relatively little time we all have left together.
My stupendously difficult climb from car to main floor in our house today tells me I won't be leaving in anything but a stretcher from now on—it was the hardest thing I've ever done. I'm now officially housebound, and even floor-bound.
There, an ENT doctor injected one side of my vocal cords while his colleague manned the nose cam to view the process from the inside.
The result, so far, is a partial return of sound. My right cord is quite calcified, the doctor says, and may never firm up completely. So I have, for the moment, a voice whose pitch I can't control, but which might get better. It's louder, which helps my dad. It isn't whispery or raspy, which helps everyone else. It does the job.�We'll hear if it improves, which should be good for the relatively little time we all have left together.
My stupendously difficult climb from car to main floor in our house today tells me I won't be leaving in anything but a stretcher from now on—it was the hardest thing I've ever done. I'm now officially housebound, and even floor-bound.
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My friend Jean-Hugues
discovered he had the same cancer I do at the same time in 2007, in
Paris, France, where he lives. He and his wife Laurence found this blog,
and together we made our way through treatment in part by sending
messages back and forth online.
But he got better. His treatment worked. He was supposed to visit this past December but was trapped in Europe by snow. Yesterday he finally made it for his first visit to the Pacific coast, staying at the nearby Hilton. I am much weaker now, but strong enough for him to sit at my bedside while we talked (well, I rasped at least).
He has spent these glorious Vancouver spring days traversing the city, and he showed me photos. My wife and kids are pleased he could visit too, visions of future trips to Paris drifting through their imaginations.
Today my mother made Easter dinner for 19 (!) people. She and my dad live next door, so after Jean-Hugues and I spent an hour or so discussing his day, we managed to join the party, and of course he could stay much longer than I could. While his English is excellent, he enjoyed speaking French with my uncle and cousins too.
I can still hear laughing through the duplex wall. I'm amazed JH would take time and spend money to see me, or that everything could come together as it has.
But it is our last chance, because it's my last chance, my last Easter, my final spring.
His flight leaves tomorrow. My father will drive him to the airport. It was brief but well worthwhile.
But he got better. His treatment worked. He was supposed to visit this past December but was trapped in Europe by snow. Yesterday he finally made it for his first visit to the Pacific coast, staying at the nearby Hilton. I am much weaker now, but strong enough for him to sit at my bedside while we talked (well, I rasped at least).
He has spent these glorious Vancouver spring days traversing the city, and he showed me photos. My wife and kids are pleased he could visit too, visions of future trips to Paris drifting through their imaginations.
Today my mother made Easter dinner for 19 (!) people. She and my dad live next door, so after Jean-Hugues and I spent an hour or so discussing his day, we managed to join the party, and of course he could stay much longer than I could. While his English is excellent, he enjoyed speaking French with my uncle and cousins too.
I can still hear laughing through the duplex wall. I'm amazed JH would take time and spend money to see me, or that everything could come together as it has.
But it is our last chance, because it's my last chance, my last Easter, my final spring.
His flight leaves tomorrow. My father will drive him to the airport. It was brief but well worthwhile.
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Today was one of three days of advance polling for the upcoming Canadian federal election, formally held at the beginning of May. My wife Air urged me to go, so we did.
She drove us down to our local high school gym and it was an easy in and out, slowed mostly by my glacial pace behind my cane. It was also a test to see if I might make it to my ENT specialist Monday, possibly (really, I wonder now?) to have my voice returned to me after weeks of laryngitis. And perhaps I might.
But for now, it was to vote. In our parliamentary system, an election can come almost any time. The advance polls fall somewhat arbitrarily too, this time on Easter weekend. (Don't forget the mail-in ballots as well, if you miss voting in person.) We pick one candidate, to represent us in our riding (i.e. electoral district), and also to represent his or her political party to us. It's very much how things work in Britain, and not at all how they work in the U.S.A.
The leader of the party who wins more ridings than any other becomes the Prime Minister, and effectively heads the country. That can get complicated if his or her party wins more, but not a majority.
It's the way we work it in Canada. Yet I've voted in every municipal, provincial, and federal election I could. My point is, sick as I am, I researched the issues, the candidates, the leaders, and the party platforms on what was important to me. I grabbed some shoes and shuffled to the car, walked into the gym, signed a form, and voted.
If I can drag myself out to vote—and that's not metaphorical, because I did have to fucking drag myself out of the car and up the stairs at times—then you can too. If you're a Canadian citizen, you have the duty, and plenty of chances.
So damn well do it.
She drove us down to our local high school gym and it was an easy in and out, slowed mostly by my glacial pace behind my cane. It was also a test to see if I might make it to my ENT specialist Monday, possibly (really, I wonder now?) to have my voice returned to me after weeks of laryngitis. And perhaps I might.
But for now, it was to vote. In our parliamentary system, an election can come almost any time. The advance polls fall somewhat arbitrarily too, this time on Easter weekend. (Don't forget the mail-in ballots as well, if you miss voting in person.) We pick one candidate, to represent us in our riding (i.e. electoral district), and also to represent his or her political party to us. It's very much how things work in Britain, and not at all how they work in the U.S.A.
The leader of the party who wins more ridings than any other becomes the Prime Minister, and effectively heads the country. That can get complicated if his or her party wins more, but not a majority.
It's the way we work it in Canada. Yet I've voted in every municipal, provincial, and federal election I could. My point is, sick as I am, I researched the issues, the candidates, the leaders, and the party platforms on what was important to me. I grabbed some shoes and shuffled to the car, walked into the gym, signed a form, and voted.
If I can drag myself out to vote—and that's not metaphorical, because I did have to fucking drag myself out of the car and up the stairs at times—then you can too. If you're a Canadian citizen, you have the duty, and plenty of chances.
So damn well do it.
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I'm still here, with a list of things that sometimes happen.
But first, I have three new rules, things that always happen, no matter how annoying...
Derek's Rule #1: There's always more poop.
Derek's Rule #2: There's always another phone call.
Derek's Rule #3: Even when "no one's coming to visit today," someone is always coming to visit today, maybe seven or eight people.
Fortunately, so far my wife Air has to handle only the last two. Here endeth the rules.
So, sometimes I'm hacking and coughing away, sometimes we get a proper motorized hospital bed installed in the living room for me, sometimes I'm up in the bathroom in the middle of the night after an entirely fictionalized dream about the Poet Laureate of the United States, and sometimes my wife and daughters and friends have completely renovated the basement while I've spent most of my time asleep.
Sometimes people deliver cases of Diet Cherry Coke at odd hours; sometimes the delivery is a care package with three cases, a nylon athletic bag, and clothes my daughters wear to school the next day; sometimes I crack a cold can of the stuff just to feel the bite of that first sip at 3 in the morning; sometimes it takes me ages to read through my Facebook messages and Twitter replies and blog comments and email; sometimes I'm frustrated by email lists that still won't unsubscribe me.
Sometimes Air and I acknowledge that we're distracting ourselves with all these other things, because I'm dying, and it's obvious now. And then we sit on the hospital bed, which is quite comfortable, and we cry.
But first, I have three new rules, things that always happen, no matter how annoying...
Derek's Rule #1: There's always more poop.
Derek's Rule #2: There's always another phone call.
Derek's Rule #3: Even when "no one's coming to visit today," someone is always coming to visit today, maybe seven or eight people.
Fortunately, so far my wife Air has to handle only the last two. Here endeth the rules.
So, sometimes I'm hacking and coughing away, sometimes we get a proper motorized hospital bed installed in the living room for me, sometimes I'm up in the bathroom in the middle of the night after an entirely fictionalized dream about the Poet Laureate of the United States, and sometimes my wife and daughters and friends have completely renovated the basement while I've spent most of my time asleep.
Sometimes people deliver cases of Diet Cherry Coke at odd hours; sometimes the delivery is a care package with three cases, a nylon athletic bag, and clothes my daughters wear to school the next day; sometimes I crack a cold can of the stuff just to feel the bite of that first sip at 3 in the morning; sometimes it takes me ages to read through my Facebook messages and Twitter replies and blog comments and email; sometimes I'm frustrated by email lists that still won't unsubscribe me.
Sometimes Air and I acknowledge that we're distracting ourselves with all these other things, because I'm dying, and it's obvious now. And then we sit on the hospital bed, which is quite comfortable, and we cry.
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Now that we have the trivia out of the way, I'll get to what you really want to know: what's the situation with the Diet Cherry Coke and Easy Cheese?In short, you guys are great. I've had so many friends drop by with a supply of one or the other or both, we're getting nicely stocked up. (If it was in the evening or nighttime, I either missed you or was in pretty sad shape—sorry Boris and Rachael.) The Easy Cheese has made a good snack on crackers or toast, and actually tastes more like cheese than I remember. We're building a little wall of the cans in one of our cupboards.
The Diet Cherry Coke situation is even better. Being a drink, we go through it faster, but people are delivering it at such a rate that there's no shortage. And just as I remember, I really, really, really like it. It has, in fact, replaced coffee and in my diet, since even first thing in the morning I'd rather have the nice cold bite of a fresh can of Diet Cherry Coke than a cuppa joe.
In my correspondence with the Diet Coke folks (see below), I have also found out the big secret. Yes! The answer is here! Why do they not sell Diet Cherry Coke in Canada? Is it a grand conspiracy, a secret plan to keep this delicious beverage from us, a sub rosa war with Canada Dry and Orange Crush? Here's what Teresa from Coke wrote:
There does seem to be a very loyal following for the beverage here in Canada, though demand is not high enough for us to produce it for the Canadian market.Sigh. Simple market supply and demand. There are lots of people like me who enjoy Diet Cherry Coke (and Cherry Coke), some quite enthusiastically—but not enough to make and sell it here. Damn, I wish it were something more sinister.
Coke has scheduled April 19 (next week) for their "care package" of Diet Cherry Coke products to arrive at my house via FedEx Ground, so I'll be interested to see what that includes. But if you've been planning to bring some cans of Diet Cherry Coke cross-border for poor cancer-riddled me (oh, as well as Easy Cheese), then keep it comin'. No one will be manufacturing it to sell here anytime soon.
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I'm at the point with my cancer that the car has finally bumped down off the pavement and we're driving on gravel
now. What I mean is, the end of the road is somewhere up ahead, not too
far, and I'm not going back to smooth speedy travel, ever. To keep
moving at a reasonable pace, I have to pay more attention to details,
and a lot of stuff I previously took for granted requires effort—mine or
someone else's. This has happened faster than I expected, but life
often does.Several doctors have helped me manage my symptoms, and the celiac block procedure I had last weeks seems to have helped with abdominal pain, for one thing. While my chest cough persists, it is not from fluid building up in my lungs. I am treating the cough, most often at night, with a drug that dries tissues out locally so I can more easily find a comfortable sleeping position. The Depends are doing their job too.
Both of my feet and lower legs are swollen, but that appears to be a regular consequence of my metabolism becoming wonky as the tumours interfere with my various bodily systems. The treatment? Elevate my feet, and wear super-tight compression stockings (I'll get thigh-high ones fitted in the next few days, ooh-la-la). I remain stupefyingly tired, especially on days like today when I decide not to take Ritalin to perk me up.
None of these symptoms will get much better. The only one that could is my voice, which has been nothing but a whisper for two months, but which I hope Dr. Anderson will inject or spray on April 25, and perhaps I'll be able to speak with my vocal cords again.
Real plans, for real. No really.
All the rest means that my wife Air and I are making plans, real plans, about what the next few weeks and months are going to look like. I am on the full B.C. Palliative Care benefits program—British Columbia seems to be in good stead when it comes to this somewhat uncomfortable specialty.I have signed the official B.C. Do Not Resuscitate (DNR) form, so if I have a heart attack or other really drastic event, then my medical team—plus first responders and hospital staff—know that I don't have long to live, and don't want any overly-heroic treatments to keep me alive at any cost. In particular, there's no point in having me on a ventilator in intensive care when that space could go to someone who might make a full recovery and live a long life.
Emily the Burnaby Health Nurse comes again tomorrow to see what I might need here at home, so that I can stay as long as possible—and to determine who else on her team might be best to help my family and me figure that out. While Burnaby Hospital's Palliative Care ward is apparently extremely nice, and just down the hill, I'm not planning to go there.
Rather, we're physically preparing our house for me to live my last weeks to months here, and likely for me to die here too. Burnaby Health will even bring in a fully-adjustable hospital bed so I can set myself up comfortably.
Being the Decider
I may sound a little cold and matter-of-fact right now, but in truth it's surprisingly satisfying, even a bit joyful, for Air and me to be able to make decisions about how my life will end—and to know that these decisions will take effect not in some abstract future, but soon.Personally I don't expect to live until autumn, and I don't know if I'll get very far into summer. But if that's the way it happens, I'd like to die during a beautiful Vancouver summer rather than one of our grimmer grey seasons. Once I'm dead there'll be no further experiences, so I may as well face a lovely city in the sunshine beforehand if I get the chance.
At the moment none of my doctors sees any particular single organ or physiological system as a big scary killer lurking to take me down suddenly, or with a series of cascading problems. More likely I'll continue to become weaker and more tired, and I may need some help breathing later. Then, eventually, weeks or a few months down this gravel road, I'll simply shut down, and I'll die. There won't be a Derek anymore.
That sounds like a decent way to go.
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Back in 2001, when my youngest daughter toilet-trained
herself at 18 months of age, I thought we'd be a household free of
diapers for decades to come. Sure, there'd be (and has been) the
occasional night of babysitting, but we figured we wouldn't be buying any more diapers until any grandchildren came along.
Well, maybe not so much. (Some text below might be Too Much Information, just to warn you.) It's been well over a year since I started wearing small protective pads to avoid accidents, especially at night, but a couple of very close calls last week have demanded that, at night, I wear a full set of Depend adult diapers. Yes, the same kind Betty White keeps making jokes about, and that prompted the hilarious "Oops! I Crapped My Pants!" faux-ads on Saturday Night Live a few years ago—no, the video won't play outside the U.S.
They're essentially the same as the diapers my kids used to wear a decade ago, merely a lot bigger, and without the cutesy girl patterns and prints. The manufacturer, Kimberly-Clark, also makes Huggies, which is only sensible. But man, they're expensive! Once I sort out the proper size, we'll probably purchase them at Costco, where they work out to about a buck apiece.
I thought that if I ever needed Depends, then admitting it would be humiliating for me. But after almost five years of cancer treatment, including radiation, surgery, chemotherapy, vomiting, blood, bodily fluids of many others sorts, and an ileostomy, it's just "meh." My wife Air and I were in the car last week, and I simply said to her, "I need to buy some Depends." She went and picked up a package for me soon after.
Our friends Jen, Neil, and their new baby Isaac dropped by yesterday for a nice long visit. Holding a sleeping newborn remains a great way to bring down my stress levels. Anyway, when we arranged the visit, my first thought was, "Hey, now we'll have two guys in the house with diapers."
It's not really funny, but it was true.
Well, maybe not so much. (Some text below might be Too Much Information, just to warn you.) It's been well over a year since I started wearing small protective pads to avoid accidents, especially at night, but a couple of very close calls last week have demanded that, at night, I wear a full set of Depend adult diapers. Yes, the same kind Betty White keeps making jokes about, and that prompted the hilarious "Oops! I Crapped My Pants!" faux-ads on Saturday Night Live a few years ago—no, the video won't play outside the U.S.
They're essentially the same as the diapers my kids used to wear a decade ago, merely a lot bigger, and without the cutesy girl patterns and prints. The manufacturer, Kimberly-Clark, also makes Huggies, which is only sensible. But man, they're expensive! Once I sort out the proper size, we'll probably purchase them at Costco, where they work out to about a buck apiece.
I thought that if I ever needed Depends, then admitting it would be humiliating for me. But after almost five years of cancer treatment, including radiation, surgery, chemotherapy, vomiting, blood, bodily fluids of many others sorts, and an ileostomy, it's just "meh." My wife Air and I were in the car last week, and I simply said to her, "I need to buy some Depends." She went and picked up a package for me soon after.
Our friends Jen, Neil, and their new baby Isaac dropped by yesterday for a nice long visit. Holding a sleeping newborn remains a great way to bring down my stress levels. Anyway, when we arranged the visit, my first thought was, "Hey, now we'll have two guys in the house with diapers."
It's not really funny, but it was true.
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As my health has taken a sudden decline, some of you (thanks especially to my parents, my in-laws, and Beth)
have offered to cook us food that we can freeze and reheat, and that
has been quite helpful. But not everyone likes to cook, yet many of you
still want to give me a hand somehow. So here's a suggestion you might
not have thought of. (It only hit me last night.)
I have never figured out why this wonderful drink, easily available
just across the border in Blaine, Washington, has never been for sale in
B.C.
The second is a true guilty pleasure. It's Kraft Easy Cheese, which sprays out of a can onto your cracker or other eating surface:
In the 1970s, we could buy something similar here, but I haven't seen
it in a Canadian grocery store in decades. No particular flavour
(Cheddar, Sharp Cheddar, whatever) is my favourite, it's the
squeeze-cheese experience that I enjoy.
So if you're a Vancouverite travelling to the U.S.A., or you're a U.S. resident visiting Vancouver, I'd be happy to reimburse you for the cost of some Diet Cherry Coke, some Kraft Easy Cheese, or both.
And if you say that those are horrible food-like substances that will give me cancer, I will just laugh and laugh.
UPDATE: It turns out that Coca-Cola
U.S.A. found this post, and will be sending me "a small supply" (I.e.
not a semi truck) of Diet Cherry Coke. Wow! Thanks to them.
UPDATE 2: Of course my network of
friends is even faster. Sylvia dropped by today with both Diet Cherry
Coke and Easy Cheese, courtesy of her visiting uncle. Another thanks!
My family and I live in Vancouver. When we travel to the U.S., we
often pick up a couple of things that are simply unavailable here. One
is Diet Cherry Coke.
No, nothing weird, none of the bizarre combinations of flavours that
the soda companies keep experimenting with. Simple: Diet. Cherry. Coke.
Like this:The second is a true guilty pleasure. It's Kraft Easy Cheese, which sprays out of a can onto your cracker or other eating surface:
So if you're a Vancouverite travelling to the U.S.A., or you're a U.S. resident visiting Vancouver, I'd be happy to reimburse you for the cost of some Diet Cherry Coke, some Kraft Easy Cheese, or both.
And if you say that those are horrible food-like substances that will give me cancer, I will just laugh and laugh.
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Not many people have seen me in the past two or three
weeks. If you had, you'd probably say, "Derek doesn't look so good." And
you'd be right. After the high point of my living wake early in March, I took a turn downhill.
Soon enough, I found it difficult to get myself out of the house for such simple tasks as walking our dog Lucy. Right now I don't have the strength to do even that, and I don't feel comfortable driving anymore either. Going out for dinner with the family, or friends? Out of the question.
A few minutes later I managed it, walking down the rest of the steps and into the yard, and sat on our lawn chair while Lucy ran around and did her usual doggy business. Ten minutes later it was time to go back inside. I propped the chair up again the wall of the house and walked, very slowly, back around the side of the house, up the stairs, and into the kitchen. Where I promptly had to sit down again on the first chair I could grab.
I had planned to make myself a bowl of corn flakes, but such a simple task seemed daunting. Instead I went to lie down in bed for 15 minutes to recover, after which I was able to prepare the cereal—but before I was able to eat it, I puked in the sink. Afterwards, the cereal went down fine, and I followed it with a Ritalin, which I hoped might push me into the realm of "not completely exhausted" later in the day.
I saw my family doctor yesterday, and he told me that is the pattern for cancer patients: the two major debilitating symptoms are pain and fatigue, and my pain is under reasonable control. He encouraged me to move around as much as I can—which is what I was trying to do during my sit-on-the-stairs experience today—and to keep my mind active. At my lowest, sometimes that in itself can be difficult.
I wonder how long it will be before I can no longer walk unassisted? Before I can't make a sandwich? Before I'm pretty much bedridden? No one knows the answers, not my doctors, not me, but the time will come. That's scary.
Soon enough, I found it difficult to get myself out of the house for such simple tasks as walking our dog Lucy. Right now I don't have the strength to do even that, and I don't feel comfortable driving anymore either. Going out for dinner with the family, or friends? Out of the question.
A drag of a morning
Here, for example, was how a series of simple tasks went this morning. I dragged myself out of bed (a pure mind-over-matter exercise against my body), put on my bathrobe and slippers, and had Lucy come with me. I opened our back door so she could go out in the yard, and I followed her. Half-way down the back steps I had to sit down on the stairs: I didn't have the energy to get all the way down to the back yard in one go.A few minutes later I managed it, walking down the rest of the steps and into the yard, and sat on our lawn chair while Lucy ran around and did her usual doggy business. Ten minutes later it was time to go back inside. I propped the chair up again the wall of the house and walked, very slowly, back around the side of the house, up the stairs, and into the kitchen. Where I promptly had to sit down again on the first chair I could grab.
I had planned to make myself a bowl of corn flakes, but such a simple task seemed daunting. Instead I went to lie down in bed for 15 minutes to recover, after which I was able to prepare the cereal—but before I was able to eat it, I puked in the sink. Afterwards, the cereal went down fine, and I followed it with a Ritalin, which I hoped might push me into the realm of "not completely exhausted" later in the day.
A slightly better afternoon
Sitting up in bed, I browsed a few websites and listened to CBC Radio. At some point I nodded off for half an hour while my wife and kids were out looking for paint colours for the kitchen. But I did wake up feeling perkier. Right now I'm on the back porch typing this in the vaguely-warm spring sunshine, with the dog once again snuffling about. I feel like a tired but functional version of myself, rather than the depleted and worn-out lump I did this morning.I saw my family doctor yesterday, and he told me that is the pattern for cancer patients: the two major debilitating symptoms are pain and fatigue, and my pain is under reasonable control. He encouraged me to move around as much as I can—which is what I was trying to do during my sit-on-the-stairs experience today—and to keep my mind active. At my lowest, sometimes that in itself can be difficult.
I wonder how long it will be before I can no longer walk unassisted? Before I can't make a sandwich? Before I'm pretty much bedridden? No one knows the answers, not my doctors, not me, but the time will come. That's scary.
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