For many years, I suffered from sciatica, but only when I stood up; lying down and sitting brought relief. No drug ever did. Then, in early 2008, the pain in my leg went away rather suddenly and I had about two weeks of pain-free bliss. At that point (and this is probably what caused the sciatic pain to cease), my upper spine began its slow collapse and the pain between my shoulder blades began, culminating in my inability to walk a year later.
A couple of nights ago, I dared to think that maybe, just maybe -- could I even bring myself to hope? -- the radiation treatments might be working and my upper-back misery might be lessening. Was it just the medication doing its job? Was it simply wishful thinking? But wait, what was this -- a familiar sensation in my hip and leg but this time while sitting and lying down: sciatica! After nearly two years, it was like the return of a bad dream. Last night, I felt a little more certain that the upper-back pain was subsiding -- but the sciatica got worse. Then I noticed my entire right kneecap was numb.
It's now 1 a.m. and no matter what I do, I can't find a comfortable position, sitting, lying or standing. I can barely concentrate on writing these words. I'm on four different pain meds, and they're not doing a bit of good.
Why does it have to be one end of my spine or the other???
Meanwhile, getting those pills down is becoming harder and harder. Swallowing water just doesn't work, and I'm terrified of choking. I've begun coughing in the past couple of days, too, and I'm worried I'm aspirating food. My head's aching and I'm feeling thoroughly sorry for myself.
If this is the way things are going to go, maybe it's time to stop blogging!
Monday, November 30, 2009
Friday, November 27, 2009
Retail therapy: My Kindle
The other day I felt so crappy, I decided I needed to exercise my consumer muscle and acquire a toy to cheer myself up. So, with many mixed feelings, I ordered a Kindle, which has finally become available in Canada, something like the last country on the planet allowed to purchase it. It arrived at my door less than 24 hours later.
My feelings continue to be mixed. The pluses that motivated me to use an e-reader are certainly there: no awkward holding a heavy or poorly bound book above my face in bed, wrist aching, pages turning unbidden; no trees killed for my reading pleasure; no additions to my already bulging bookshelves. I also bought a nice leather case in which it can stand upright on my kitchen table so I can read while I eat (normally a frequent and favourite pastime, though I'm not eating much these days).
But the thought of abandoning the physical book altogether makes my heart ache. Whenever I recall a book, I see it in my mind's eye, the design of the cover, the typeface chosen just for that book, the layout of the pages. Now, when I recall a book I've read on the Kindle, what will distinguish it from any other? Similarly, I tend to remember roughly where in a book a particular passage occurred, and can often relocate it based on that memory: about three-quarters of the way through, say, at the end of a paragraph in the upper right corner of the two-page spread. That's not possible on the e-reader, though the device makes it pretty easy to mark a page or highlight a passage even if a pen is not handy.
I also miss the ability to pass along a book to another reader, though I've always had mixed feelings about that, too, since doing so may prevent another sale for the writer.
And what about the sublime experience of book-shopping? Will I simply spend those browsing hours in Chapters or an independent bookstore, soaking in the gorgeous array of what's available, and then go home and give my dollars to Amazon? I guess so.
I now have a reputation in my family as the aunt who gives only books as presents, and I'd like to continue to do so, but already one other family member has a Kindle: I think I will miss the pleasure of choosing a volume for him, new and unique in its appearance, heft and smell, and I think I would miss receiving such gifts, too.
Still, I don't have room for any more books in my house. Or magazines, for that matter. I'm the kind of person who buys magazines to read long, grey articles; I don't respond much to the visuals. So for the most part, I don't mind reading magazines online. But, having worked in magazines for decades, I'm more aware than the average reader of how much goes into making magazines look beautiful, even down to my job of ensuring that the type has been laid out without great gaps or weird endings. Online, none of that matters; the shape of the type is endlessly malleable as you resize the pages for your own convenience.
Every so often, even I encounter an article that needs pictures to work: this week I read a terrific piece in The Atlantic (November issue), about the grassroots housing developments springing up in New Orleans, that wouldn't have worked so well without photos. Of course, in the online version, you can see even more visuals than you could in the print magazine, but I'm guessing the same would not be true on the Kindle version (which is why a single issue costs just $2.99); it doesn't have a colour screen, in any case.
Which leads me to the complaint I wasn't expecting to make: I find the Kindle screen a little unpleasant to look at because it's so grey. I thought it would be white or off-white or cream, like most book pages. As it is, I can read it just fine, but I have a constant nagging feeling that a light should be coming back on, like my laptop screen when it's dimmed for energy-saver mode. I had to laugh at Ian Brown's disparaging review of the Kindle in The Globe and Mail, in which he describes being surprised that he can't read it in the dark. I wonder if I'll ever get used to the screen.
What has surprised me is that I much prefer reading The Globe and Mail on the Kindle to my online subscription. The recent revamping of the Globe's website seems like a disaster to me: it's not nearly as easy to search as the old one; I get a less-comprehensive daily email notification than before, and half the time the links don't work; signing in has become confusing. But even without those glitches, an online newspaper works on hyperlinks and is continually updated, so although I may get linked in all kinds of interesting directions, I always come away from reading the "paper" online feeling like I haven't read the whole paper. Because I'm old-school, that matters to me.
But on the Kindle, the experience of reading the Globe is very linear. You can start at the beginning and click through every article in the paper until you get to the end, much as you would browse the physical item. (You can also access it by section.) My pre-Web soul -- my need for things to come in neatly delineated packages -- finds this satisfying, even though I suppose I'm missing out on the interesting distractions the Web version can provide.
Meanwhile, I have dozens of books lying around my house that I want to read, so I suppose the Kindle will gather dust, unless I feel so rich that I can spend the $12 U.S. to replace each paper copy with an e-version. Just my luck I'll recover fully from my cancer treatment and live to need my money! I may well, however, spend the three bucks it costs to get Jane Austen's entire oeuvre, which, I'm only a little embarrassed to say, I don't actually own in hard copy, and most of which, I'm very embarrassed to say, I haven't read.
My feelings continue to be mixed. The pluses that motivated me to use an e-reader are certainly there: no awkward holding a heavy or poorly bound book above my face in bed, wrist aching, pages turning unbidden; no trees killed for my reading pleasure; no additions to my already bulging bookshelves. I also bought a nice leather case in which it can stand upright on my kitchen table so I can read while I eat (normally a frequent and favourite pastime, though I'm not eating much these days).
But the thought of abandoning the physical book altogether makes my heart ache. Whenever I recall a book, I see it in my mind's eye, the design of the cover, the typeface chosen just for that book, the layout of the pages. Now, when I recall a book I've read on the Kindle, what will distinguish it from any other? Similarly, I tend to remember roughly where in a book a particular passage occurred, and can often relocate it based on that memory: about three-quarters of the way through, say, at the end of a paragraph in the upper right corner of the two-page spread. That's not possible on the e-reader, though the device makes it pretty easy to mark a page or highlight a passage even if a pen is not handy.
I also miss the ability to pass along a book to another reader, though I've always had mixed feelings about that, too, since doing so may prevent another sale for the writer.
And what about the sublime experience of book-shopping? Will I simply spend those browsing hours in Chapters or an independent bookstore, soaking in the gorgeous array of what's available, and then go home and give my dollars to Amazon? I guess so.
I now have a reputation in my family as the aunt who gives only books as presents, and I'd like to continue to do so, but already one other family member has a Kindle: I think I will miss the pleasure of choosing a volume for him, new and unique in its appearance, heft and smell, and I think I would miss receiving such gifts, too.
Still, I don't have room for any more books in my house. Or magazines, for that matter. I'm the kind of person who buys magazines to read long, grey articles; I don't respond much to the visuals. So for the most part, I don't mind reading magazines online. But, having worked in magazines for decades, I'm more aware than the average reader of how much goes into making magazines look beautiful, even down to my job of ensuring that the type has been laid out without great gaps or weird endings. Online, none of that matters; the shape of the type is endlessly malleable as you resize the pages for your own convenience.
Every so often, even I encounter an article that needs pictures to work: this week I read a terrific piece in The Atlantic (November issue), about the grassroots housing developments springing up in New Orleans, that wouldn't have worked so well without photos. Of course, in the online version, you can see even more visuals than you could in the print magazine, but I'm guessing the same would not be true on the Kindle version (which is why a single issue costs just $2.99); it doesn't have a colour screen, in any case.
Which leads me to the complaint I wasn't expecting to make: I find the Kindle screen a little unpleasant to look at because it's so grey. I thought it would be white or off-white or cream, like most book pages. As it is, I can read it just fine, but I have a constant nagging feeling that a light should be coming back on, like my laptop screen when it's dimmed for energy-saver mode. I had to laugh at Ian Brown's disparaging review of the Kindle in The Globe and Mail, in which he describes being surprised that he can't read it in the dark. I wonder if I'll ever get used to the screen.
What has surprised me is that I much prefer reading The Globe and Mail on the Kindle to my online subscription. The recent revamping of the Globe's website seems like a disaster to me: it's not nearly as easy to search as the old one; I get a less-comprehensive daily email notification than before, and half the time the links don't work; signing in has become confusing. But even without those glitches, an online newspaper works on hyperlinks and is continually updated, so although I may get linked in all kinds of interesting directions, I always come away from reading the "paper" online feeling like I haven't read the whole paper. Because I'm old-school, that matters to me.
But on the Kindle, the experience of reading the Globe is very linear. You can start at the beginning and click through every article in the paper until you get to the end, much as you would browse the physical item. (You can also access it by section.) My pre-Web soul -- my need for things to come in neatly delineated packages -- finds this satisfying, even though I suppose I'm missing out on the interesting distractions the Web version can provide.
Meanwhile, I have dozens of books lying around my house that I want to read, so I suppose the Kindle will gather dust, unless I feel so rich that I can spend the $12 U.S. to replace each paper copy with an e-version. Just my luck I'll recover fully from my cancer treatment and live to need my money! I may well, however, spend the three bucks it costs to get Jane Austen's entire oeuvre, which, I'm only a little embarrassed to say, I don't actually own in hard copy, and most of which, I'm very embarrassed to say, I haven't read.
Tuesday, November 24, 2009
More waiting....
After five radiation treatments last week, I am experiencing the predicted fatigue, though not the sore throat. I can barely make it up the stairs. Who knows how much of it is the many medications I'm on? It's a terrible trade-off; I have only a little pain, and I can sleep quite well. But I'm so woozy. Meanwhile, I'm keeping one ear cocked for the phone, assuming that if the CT and MRI scans I had a week ago show anything scary, my doctor will call me at home. Waiting, waiting, waiting....
The numb pressure under my breasts continues, meanwhile, and swallowing is still a mini-ordeal. I'm afraid to weigh myself; the pounds are melting away. But I stopped taking the misoprostol, the drug meant to protect my stomach that gave me stomach cramps. My appetite is getting poorer and poorer as long as I'm upright -- when I lie down, I'm starving.
Last month, I finally took advantage of my prize for receiving the National Magazine Awards Outstanding Achievement honour: a photo portrait session with a photographer of my choice. (I waited until I had a little hair.) So I guess I'll post the best shot here. It's by Eden Robbins.
On a related topic: Kudos to my cousin Shane Brouse of Los Angeles (or thereabouts), who recently went to New York to pick up a silver Clio Award for his interactive website LiveWithIt.com. Good on you, Shane! (That's him on the left.)
The numb pressure under my breasts continues, meanwhile, and swallowing is still a mini-ordeal. I'm afraid to weigh myself; the pounds are melting away. But I stopped taking the misoprostol, the drug meant to protect my stomach that gave me stomach cramps. My appetite is getting poorer and poorer as long as I'm upright -- when I lie down, I'm starving.
Last month, I finally took advantage of my prize for receiving the National Magazine Awards Outstanding Achievement honour: a photo portrait session with a photographer of my choice. (I waited until I had a little hair.) So I guess I'll post the best shot here. It's by Eden Robbins.
On a related topic: Kudos to my cousin Shane Brouse of Los Angeles (or thereabouts), who recently went to New York to pick up a silver Clio Award for his interactive website LiveWithIt.com. Good on you, Shane! (That's him on the left.)
Wednesday, November 18, 2009
Chunder road
So, it's 5 a.m. and I stumble downstairs; I'm not in too much pain and I've been sleeping since midnight, which is great after two disheartening nights of pacing the floor. Still, I can tell the pain will grow and I'd like to sleep some more, and I haven't taken any pain meds all night. Yesterday I called the pain specialist and told him that not only is the new pill regime not working, but I feel nauseated, weak and generally yucky; he suggested going back to the Tylenol 3s (thereby upping my Tylenol intake again) and trying to keep tolerating the Elavil. The long-actor is to be taken every 8 hours -- I've chosen 7 a.m., 3 p.m. and 11 p.m. The original dose of Tylenol Extra Strength was every six hours, which was a little inconvenient, and the pure codeine was a top-up that could be taken within an hour of taking the long-actor. No matter what, I have to get up in the night to take something. Now, going back to the T3s, at every four to six hours, it takes some clever calculations to figure out how to make sure I don't take two T3s at the same time as the long-acting codeine. Confused? Try thinking about it in the middle of the night when you're on Elavil.
I've been careful to place the right pill bottles on top of the microwave and to put the wrong ones away, but in my stupor I take the long-acting codeine instead of the short, recording it incorrectly on my refrigerator chart, and then when I get up again at 7, I take 2 Tylenol 3s with codeine. At 7:30, after walking from the basement to my upstairs bedroom, I am so woozy I have to lie down. I get on the streetcar at 8 a.m. to go to Princess Margaret Hospital for my radiation treatment, and I feel a little hot and claustrophobic. When I get up to leave the car, I begin to sense I'm going to pass out; I manage to get across the street and have to sit down on one of the raised flowerbeds on the median in the middle of University Avenue. With my head between my knees, I throw up the smoothie I had for breakfast.
A nice man walks me to the hospital and I have my treatment, but after some more breakfast with a friend in the hospital Druxy's, I go back and see a nurse, who finds my vitals are OK and agrees that I've probably just OD'ed on codeine and that I'm taking so many strange drugs, my body is not faring really well. I've had a similar reaction to codeine a couple of times in the past (once when I took codeine pills for a hangover headache and probably still had quite a bit of alcohol in my liver).
But I've had two good evenings in a row, relatively pain-free, and a pretty good night, so I hope I'll have more of those.
The beautiful weather continues!
I've been careful to place the right pill bottles on top of the microwave and to put the wrong ones away, but in my stupor I take the long-acting codeine instead of the short, recording it incorrectly on my refrigerator chart, and then when I get up again at 7, I take 2 Tylenol 3s with codeine. At 7:30, after walking from the basement to my upstairs bedroom, I am so woozy I have to lie down. I get on the streetcar at 8 a.m. to go to Princess Margaret Hospital for my radiation treatment, and I feel a little hot and claustrophobic. When I get up to leave the car, I begin to sense I'm going to pass out; I manage to get across the street and have to sit down on one of the raised flowerbeds on the median in the middle of University Avenue. With my head between my knees, I throw up the smoothie I had for breakfast.
A nice man walks me to the hospital and I have my treatment, but after some more breakfast with a friend in the hospital Druxy's, I go back and see a nurse, who finds my vitals are OK and agrees that I've probably just OD'ed on codeine and that I'm taking so many strange drugs, my body is not faring really well. I've had a similar reaction to codeine a couple of times in the past (once when I took codeine pills for a hangover headache and probably still had quite a bit of alcohol in my liver).
But I've had two good evenings in a row, relatively pain-free, and a pretty good night, so I hope I'll have more of those.
The beautiful weather continues!
Sunday, November 15, 2009
Seeking relief
I finally saw a pain specialist on Friday: another instance of hearing one story from a confident-sounding resident and then another from the senior doctor. Still, they were nice and sympathetic. They ended up sticking with Tylenol and codeine, but in separate pills and different doses; I have a long-acting codeine and a short-acting one to top it up. The addition is Elavil (amitriptyline), an old-style antidepressant that also relieves nerve pain and helps induce sleep. The doc explained that the pain and numbness around my ribs are due to nerves being pinched at the spine.
I noticed a big difference the first night; the rib pain was much reduced and I slept quite a bit. But I'm still waking up with spine pain and having to get up to take more pills. And I'm feeling very dopey during the day. I didn't really feel like I was awake today until about 3 o'clock.
Had an MRI of my head yesterday; the technician, when I asked, told me that the dye he injected would not produce any side effects, but after he slid me into the tube, my mouth began to produce voluminous amounts of saliva. I had to swallow repeatedly and felt like I was drowning -- I almost pushed the panic button -- but I managed to stay put and the saliva eventually died down. I hope the swallowing didn't affect the picture. After I was taken out of the tube, I told the technician what had happened. "Yes, some people have that reaction; some even throw up," he said. Gee, thanks.
Being in the MRI tube, accompanied by what sounds like outtakes from a recording by an avant-garde electronica band, doesn't make me claustrophobic. It used to be, though, that I'd imagine being abandoned in the machine while the technicians were evacuated for a fire or the end of the world or something. Now, when I have to have an extended scan, I meditate, and the time goes fairly quickly.
Tomorrow I'll have a CT scan of my head, but before that the spine radiation begins: please, please let it have an effect. A positive effect.
Pollyanna moments:
I noticed a big difference the first night; the rib pain was much reduced and I slept quite a bit. But I'm still waking up with spine pain and having to get up to take more pills. And I'm feeling very dopey during the day. I didn't really feel like I was awake today until about 3 o'clock.
Had an MRI of my head yesterday; the technician, when I asked, told me that the dye he injected would not produce any side effects, but after he slid me into the tube, my mouth began to produce voluminous amounts of saliva. I had to swallow repeatedly and felt like I was drowning -- I almost pushed the panic button -- but I managed to stay put and the saliva eventually died down. I hope the swallowing didn't affect the picture. After I was taken out of the tube, I told the technician what had happened. "Yes, some people have that reaction; some even throw up," he said. Gee, thanks.
Being in the MRI tube, accompanied by what sounds like outtakes from a recording by an avant-garde electronica band, doesn't make me claustrophobic. It used to be, though, that I'd imagine being abandoned in the machine while the technicians were evacuated for a fire or the end of the world or something. Now, when I have to have an extended scan, I meditate, and the time goes fairly quickly.
Tomorrow I'll have a CT scan of my head, but before that the spine radiation begins: please, please let it have an effect. A positive effect.
Pollyanna moments:
- We've had such beautiful weather this fall. Not too cold, sunny most of the time. It has a salutary effect on my mood. I remember the winter of 2002-03, when my friend Adele was dying, she commented at one point that the sun had not shone in six weeks, which we characterized as typical Toronto weather. I ended up suffering from massive depression and anxiety that winter, which I blamed on a lot of circumstances, but now that I think of it, the lack of sunshine couldn't have helped much, and it must have made Adele's life hellish. I've been thinking of getting some of those seasonal-affective disorder lights, though I have no idea which ones are the best. But I must say that the past couple of winters have seemed much sunnier than usual to me.
- Rosie took over my kitchen yesterday and made me soup and smoothies and other good things.
Wednesday, November 11, 2009
Wetpaint is all wet
A diversion away from cancer about lessons in the limits of collaborative technology:
As I've mentioned in this space before, when I was first treated for cancer six years ago, as a single woman living alone I went to some lengths to mobilize the goodwill of a large number of friends and acquaintances to help me through the experience. At the time I wished there were such a thing as a website to which multiple parties could contribute so that I could post online a calendar with my schedule and have people sign up to help me on a day of their choice.
Of course, by the time my cancer had returned, I had become familiar with such a tool, namely the wiki, which is basically a collaborative website that more than one party can make changes to. I found several uses for wikis: When I taught at Ryerson, I wanted a place where students could independently sign up for presentation times (rather than my posting a sign-up sheet on the door and then standing back as the students trampled me, pens in hand), and a place where they could brainstorm together on one online page. I also wanted a website for my book club that all members could contribute to. So, I went searching for just the right wiki.
I chose Wetpaint not just because it was free (they make their money only from ads). A couple of other sites I looked at charged a little for a premium service that permits private wikis; I wouldn't have minded paying, but Wetpaint offered private wikis for nothing. More important, to me, were Wetpaint's unusually attractive templates, including one designed especially for book clubs. I spent a lot of time setting up my wikis, and they worked pretty well, although I had to do a lot of persuading to get my book club members comfortable with the idea; not only are some of the members not particularly adept with computers, but they understandably worried about their addresses being posted on a public website. I assured everyone that I could set the wiki as a private one. Only those people whom I invited by email could join, and they had to set a password to get in.
When I got sick last January, I decided to use Wetpaint for the purpose I'd originally identified: to manage my "care team." On my invitation, friends and relatives could consult an online calendar I set up and offer assistance to fit with my schedule of medical appointments; if they wanted to, they could write offers of rides, etc., or other notes, directly on the calendar. I could indicate whether I needed help with anything in particular, and post updates on my treatments and how I was feeling. In theory, when I become too sick to handle the management of the wiki, other people could take it over and it would be even more useful. It also reassures my family, especially my mother, that I have friends to help out when they can't.
From time to time, invited members have told me that they were unable to register, or, once registered, unable to sign in to Wetpaint. I've just discovered this is more than just a glitch. The last person who had trouble registering got an error message saying that private wikis could no longer invite people to join. I was shocked and went looking for an explanation.
Wetpaint is not a big company with customer service you can call; most problems are resolved on message boards with moderators who seem to offer advice out of the goodness of their hearts. I found out by reading about this latest development that their hearts are not necessarily in the right place.
Evidently, private wikis are a pain for Wetpaint to maintain, so -- without any warning and, indeed, without notification of any kind -- I can no longer invite people to register to belong to one of my wikis. Worse, Wetpaint doesn't acknowledge that this is a problem at all; they don't frame it as something one can no longer do. Instead, they describe what is essentially a workaround: the wiki administrator can still invite someone to join the wiki, but the only way to do it is to send the invitation, then quickly change the wiki's settings to "public," then wait until the individual has registered, then change the settings back to "private." For whatever period of time that might be (the Wetpaint apologists -- I can hardly call them staff -- seem to think that process would take only minutes, but I've had people take weeks to decide to accept my invitation to join), the entire wiki would be open to the whole world.
Thousands of Wetpaint wikis are maintained by corporations, which use them to help staffers collaborate on projects involving proprietary information. The many complaints on the Wetpaint Central discussion board make it clear that the workaround is simply not an option. One user stated on the forum that he had applied for graduate funding based on a project that involved using a private wiki, and now will have to start again from scratch. But the Wetpaint people ridicule the suggestion that outsiders are likely to see any of the private information; they keep saying nobody is going to find it in that short time it's open, blithely ignoring the fact that a principle is at stake: a private wiki's administrator assures its members that the wiki is private and cannot then in good conscience open it up every time a new member wishes to join. This in addition to the extra work involved in monitoring every user's registration.
The discussion thread about this recent development at Wetpaint is an eye-opener, a perfect example of the ethos of the Wild West Web, populated by jolly volunteers and unpaid enthusiasts for whom the idea of customer service is a non-starter because there are no customers and there is no service (one supporter actually had the gall to say explicitly that we were not customers unless we paid for a custom domain name, so how dare we complain?). Wetpaint, host of thousands of wikis, is itself a wiki and by definition is only as good as those who collaborate on it. The "moderators" who respond to the complaints on the discussion thread are petulant and impatient: they seem genuinely puzzled and exasperated that, having stated the facts and explained the workaround, they are still being bombarded by complaints. In a normal business setting, managers would allow similar complaints to accumulate in order to measure clients' dissatisfaction -- I know many would cut them off at a certain point, but I've never seen any manager bully online commenters by implying they had no right to repeat a complaint that had already been made by someone else.
As the discussion unfolded, it became apparent that the main problem is the advertising-supported business model. The advertisers do not want their ads appearing on private sites, which limit the number of impressions they receive and also make them unrecordable. Furthermore, Wetpaint recently suffered massive staff cuts (it had a staff of something like 50).
I suppose the joke is on us "customers" or non-customers or whatever we are; the "information wants to be free" model mitigates against those of us who want both freedom and privacy. But it's been handled rather badly by Wetpaint, whose people are so immersed in computer nerd-dom they can't put themselves in the shoes of regular-guy users. The nature of this kind of Web 2.0 innovation is that many or even most of the heavy users are nerds, too. So when they discuss new developments on the user forum, they don't feel like they are businesspeople addressing customers; they seem to feel they are simply computer people hashing things out with other collaborators.
For example, here's one Wetpaint moderator:
Other commenters have noted that we should be pleased we can still have private wikis, which is true, but what's the point of a private wiki if I can no longer invite people to join without a lot of trouble? And it won't surprise me if Wetpaint simply eliminates the private option since it appears to be so much trouble.
So I am now in search of a new wiki host. Suggestions welcome. I am leaning toward Wikispaces. PBworks is another popular one, and it has gone completely in the opposite direction from Wetpaint by becoming entirely businesslike (they don't even use the word "wiki" anymore, instead talking about "solutions") and charging quite a lot. They are wise to stake out the corporate market, I think. They do offer a basic, free wiki, but I don't like its interface much.
As I've mentioned in this space before, when I was first treated for cancer six years ago, as a single woman living alone I went to some lengths to mobilize the goodwill of a large number of friends and acquaintances to help me through the experience. At the time I wished there were such a thing as a website to which multiple parties could contribute so that I could post online a calendar with my schedule and have people sign up to help me on a day of their choice.
Of course, by the time my cancer had returned, I had become familiar with such a tool, namely the wiki, which is basically a collaborative website that more than one party can make changes to. I found several uses for wikis: When I taught at Ryerson, I wanted a place where students could independently sign up for presentation times (rather than my posting a sign-up sheet on the door and then standing back as the students trampled me, pens in hand), and a place where they could brainstorm together on one online page. I also wanted a website for my book club that all members could contribute to. So, I went searching for just the right wiki.
I chose Wetpaint not just because it was free (they make their money only from ads). A couple of other sites I looked at charged a little for a premium service that permits private wikis; I wouldn't have minded paying, but Wetpaint offered private wikis for nothing. More important, to me, were Wetpaint's unusually attractive templates, including one designed especially for book clubs. I spent a lot of time setting up my wikis, and they worked pretty well, although I had to do a lot of persuading to get my book club members comfortable with the idea; not only are some of the members not particularly adept with computers, but they understandably worried about their addresses being posted on a public website. I assured everyone that I could set the wiki as a private one. Only those people whom I invited by email could join, and they had to set a password to get in.
When I got sick last January, I decided to use Wetpaint for the purpose I'd originally identified: to manage my "care team." On my invitation, friends and relatives could consult an online calendar I set up and offer assistance to fit with my schedule of medical appointments; if they wanted to, they could write offers of rides, etc., or other notes, directly on the calendar. I could indicate whether I needed help with anything in particular, and post updates on my treatments and how I was feeling. In theory, when I become too sick to handle the management of the wiki, other people could take it over and it would be even more useful. It also reassures my family, especially my mother, that I have friends to help out when they can't.
From time to time, invited members have told me that they were unable to register, or, once registered, unable to sign in to Wetpaint. I've just discovered this is more than just a glitch. The last person who had trouble registering got an error message saying that private wikis could no longer invite people to join. I was shocked and went looking for an explanation.
Wetpaint is not a big company with customer service you can call; most problems are resolved on message boards with moderators who seem to offer advice out of the goodness of their hearts. I found out by reading about this latest development that their hearts are not necessarily in the right place.
Evidently, private wikis are a pain for Wetpaint to maintain, so -- without any warning and, indeed, without notification of any kind -- I can no longer invite people to register to belong to one of my wikis. Worse, Wetpaint doesn't acknowledge that this is a problem at all; they don't frame it as something one can no longer do. Instead, they describe what is essentially a workaround: the wiki administrator can still invite someone to join the wiki, but the only way to do it is to send the invitation, then quickly change the wiki's settings to "public," then wait until the individual has registered, then change the settings back to "private." For whatever period of time that might be (the Wetpaint apologists -- I can hardly call them staff -- seem to think that process would take only minutes, but I've had people take weeks to decide to accept my invitation to join), the entire wiki would be open to the whole world.
Thousands of Wetpaint wikis are maintained by corporations, which use them to help staffers collaborate on projects involving proprietary information. The many complaints on the Wetpaint Central discussion board make it clear that the workaround is simply not an option. One user stated on the forum that he had applied for graduate funding based on a project that involved using a private wiki, and now will have to start again from scratch. But the Wetpaint people ridicule the suggestion that outsiders are likely to see any of the private information; they keep saying nobody is going to find it in that short time it's open, blithely ignoring the fact that a principle is at stake: a private wiki's administrator assures its members that the wiki is private and cannot then in good conscience open it up every time a new member wishes to join. This in addition to the extra work involved in monitoring every user's registration.
The discussion thread about this recent development at Wetpaint is an eye-opener, a perfect example of the ethos of the Wild West Web, populated by jolly volunteers and unpaid enthusiasts for whom the idea of customer service is a non-starter because there are no customers and there is no service (one supporter actually had the gall to say explicitly that we were not customers unless we paid for a custom domain name, so how dare we complain?). Wetpaint, host of thousands of wikis, is itself a wiki and by definition is only as good as those who collaborate on it. The "moderators" who respond to the complaints on the discussion thread are petulant and impatient: they seem genuinely puzzled and exasperated that, having stated the facts and explained the workaround, they are still being bombarded by complaints. In a normal business setting, managers would allow similar complaints to accumulate in order to measure clients' dissatisfaction -- I know many would cut them off at a certain point, but I've never seen any manager bully online commenters by implying they had no right to repeat a complaint that had already been made by someone else.
As the discussion unfolded, it became apparent that the main problem is the advertising-supported business model. The advertisers do not want their ads appearing on private sites, which limit the number of impressions they receive and also make them unrecordable. Furthermore, Wetpaint recently suffered massive staff cuts (it had a staff of something like 50).
I suppose the joke is on us "customers" or non-customers or whatever we are; the "information wants to be free" model mitigates against those of us who want both freedom and privacy. But it's been handled rather badly by Wetpaint, whose people are so immersed in computer nerd-dom they can't put themselves in the shoes of regular-guy users. The nature of this kind of Web 2.0 innovation is that many or even most of the heavy users are nerds, too. So when they discuss new developments on the user forum, they don't feel like they are businesspeople addressing customers; they seem to feel they are simply computer people hashing things out with other collaborators.
For example, here's one Wetpaint moderator:
The invite feature for Wetpaint was removed for various reasons. First off, I have have you know it is not "a bit more coding", it is a ton of coding to make the invite system for private sites. So, saying "it is a bit more coding" is a completely false statement.I don't blame these folks for being angry when their obviously thankless jobs are at risk, their workload is higher and they are slaves to a business model that can only piss off a substantial number (but, according to them, a small fraction) of users. But still...
Also, changing the permissions for a few minutes is not a big deal. Sorry if I sound rude, but it isn't a big deal. A very easy fix to having your students come on the site is during class, make the site un-private, and have all of your students join the site. Then, you can make the site private again. If anyone who is not a student of yours joins the site, you can easily ban them.
I am not a big fan of the removal of invites to private sites, but, there are many ways around this. I have already given you one solution, and you guys are smart people, so I am sure you can figure it out. I do not think making your site public for a few minutes will cause that much damage.
Other commenters have noted that we should be pleased we can still have private wikis, which is true, but what's the point of a private wiki if I can no longer invite people to join without a lot of trouble? And it won't surprise me if Wetpaint simply eliminates the private option since it appears to be so much trouble.
So I am now in search of a new wiki host. Suggestions welcome. I am leaning toward Wikispaces. PBworks is another popular one, and it has gone completely in the opposite direction from Wetpaint by becoming entirely businesslike (they don't even use the word "wiki" anymore, instead talking about "solutions") and charging quite a lot. They are wise to stake out the corporate market, I think. They do offer a basic, free wiki, but I don't like its interface much.
Tuesday, November 10, 2009
Hoarse with no name
It's been a tough few days. Last Thursday I thought I'd see the medical oncologist when I went in for my Zometa injection, but she wasn't there; instead I saw a nurse practitioner, who has a much more organized air and better communication skills than Dr. Lee, and who assured me she'd never seen anybody with breast cancer lose their voice for cancer-related reasons. She thought Dr. Lee was just being needlessly scary. However, when I saw the radiation oncologist later in the day, she confirmed that it could well be a metastatic lesion impinging on a nerve somewhere in my neck. So yesterday I went to an ear, nose and throat specialist, which resulted in more emotional rollercoaster moves.
Of course, I first saw a young resident, who stuck a camera down my nostril and made me squeak "EEE! EEE!" like a startled porpoise as he examined my vocal cords. I felt like I was trying to swallow paper clips. My mother, bless her heart, held my hand; what a wuss I am. Anyway, the guy seemed very confident and competent, and told me that my right vocal cord was paralyzed, which was causing the difficulty swallowing, and that it was very likely because a cancerous lesion is pressing on the nerve that supplies it. He added that that nerve would be in the top portion of my lungs.
I had been told in September that I had no metastatic disease in my vital organs, so the thought that it had spread to my lungs was, shall we say, dismaying. Young doc backed off a little when I told him about that scan, and went to get his boss, while my mom and I had a tearful little pity party in the office, with the door wide open to all who passed.
The actual specialist was also friendly and competent-seeming, but much more upbeat. She said that only the nerves to the left vocal cord went through my lungs; the ones on the right are in my neck somewhere.
Now, I can't explain why I find it less alarming that I might have metastasis in my brain stem than in my lungs. Perhaps because I was prepared for the idea it had spread up my neck, but not prepared for the lungs notion; perhaps because the radiation oncologist had suggested that radiation in my neck has a good success rate. I don't know. It was like the doctors were playing "bad cop, good cop." In any case, I was, perversely, slightly relieved.
I was more relieved when she stuck the scope down my nose, examined the vocal cord and announced that it wasn't actually paralyzed, just partially paralyzed. At this point I wanted to slap Young Doc.
Then she said that lots of people get this condition, which is called vocal cord paresis, for no good reason at all, just like some people get Bell's palsy for a few months and then it goes away. Sometimes the other vocal cord compensates, sometimes they have to perform a procedure that trains the bad vocal cord to work again. It's not necessarily an indication of cancer spread.
Still, what are the odds that I would get this out of the blue by coincidence, when in fact I have cancer progressing up my spine. I am having an MRI of my head on Saturday and a CT scan on Monday, and on December 2 I'll see Dr. ENT to get the results. Until then I just have to keep my fingers crossed and continue to croak, and to eat very, very slowly.
In the meantime, tomorrow I will have a planning session for radiation to my spine, which begins on Monday and goes for five days in a row. I may get a sore throat as a side effect, and the spine pain should subside within two to three weeks. If the cancer responds to treatment. And if all the pain is really coming from the cancer and not just my mechanical problems.
It does seem likely that the rib pain is from cancer, since it feels just like Dr. Lee warned me it might: like an increasingly tight vise around my middle. However, they are not radiating the ribs, just the spine (vertebrae T1, T2, T3, C6 and C7), in case the rib pain is simply radiating from the spine. I seriously believe there is a bone met right on my lower left rib which is causing the miserable pain just below, possibly pressing on my spleen (the nurse practitioner agreed), but when I tried to tell the radiation oncologist that, she rather patronizingly explained that she had other patients to see and in so many words suggested I should not go on about my pain.
A wonderful, accomplished friend was with me, and at that point she started to cry, possibly because she thought I was being dismissed, but I'm so used to that attitude from doctors I didn't even notice it. My friend said earlier, "You know, I'm not smart enough to get cancer," reeling at how much information I have to sort through and keep track of. And her father was a doctor.
I also have a metastasis on my lower sacrum near the left pelvis (that's where they took the bone biopsy sample, which was malignant), but they won't radiate that yet because it's not causing any discomfort whatsoever.
So...my mood has been shaky. It does feel like the rest of my life will be like a macabre game of Whac-a-Mole. I have experienced loss of hope for the first time since this all began, and trying to control the pain hasn't helped. Last Thursday the nurse practitioner agreed to refer me to the pain management clinic (readers of this blog may have noted that, despite my GP's commiserating with me recently about my not having been referred to pain management, he still allowed me to leave his office without referring me!). She said she wrote a dire letter because the waiting time can be quite long -- and suggested that in the meantime morphine would be better for me than Tylenol 3s. I guess she doesn't want me taking so much acetaminophen because it's hard on the liver and kidneys. I tried the morphine for three or four days, and it didn't really provide much pain relief, and left me feeling foggy and weak. It made the constipation worse, too. It certainly made me sleep -- like I was in a coma. I didn't like it at all, but I didn't have any Tylenol 3s left, only some pure codeine pills, which should be better for me, too, but they didn't seem to do the trick, either. So I managed to get my hands on more Tylenol 3s, and feel pretty good for about two and a half hours out of every four, plus I have to set my alarm to get up and take pills every four hours in the night. The T3s make me dopey, too, but it's a nice dopey rather than an "I'm dying" dopey.
Pollyanna moments:
Of course, I first saw a young resident, who stuck a camera down my nostril and made me squeak "EEE! EEE!" like a startled porpoise as he examined my vocal cords. I felt like I was trying to swallow paper clips. My mother, bless her heart, held my hand; what a wuss I am. Anyway, the guy seemed very confident and competent, and told me that my right vocal cord was paralyzed, which was causing the difficulty swallowing, and that it was very likely because a cancerous lesion is pressing on the nerve that supplies it. He added that that nerve would be in the top portion of my lungs.
I had been told in September that I had no metastatic disease in my vital organs, so the thought that it had spread to my lungs was, shall we say, dismaying. Young doc backed off a little when I told him about that scan, and went to get his boss, while my mom and I had a tearful little pity party in the office, with the door wide open to all who passed.
The actual specialist was also friendly and competent-seeming, but much more upbeat. She said that only the nerves to the left vocal cord went through my lungs; the ones on the right are in my neck somewhere.
Now, I can't explain why I find it less alarming that I might have metastasis in my brain stem than in my lungs. Perhaps because I was prepared for the idea it had spread up my neck, but not prepared for the lungs notion; perhaps because the radiation oncologist had suggested that radiation in my neck has a good success rate. I don't know. It was like the doctors were playing "bad cop, good cop." In any case, I was, perversely, slightly relieved.
I was more relieved when she stuck the scope down my nose, examined the vocal cord and announced that it wasn't actually paralyzed, just partially paralyzed. At this point I wanted to slap Young Doc.
Then she said that lots of people get this condition, which is called vocal cord paresis, for no good reason at all, just like some people get Bell's palsy for a few months and then it goes away. Sometimes the other vocal cord compensates, sometimes they have to perform a procedure that trains the bad vocal cord to work again. It's not necessarily an indication of cancer spread.
Still, what are the odds that I would get this out of the blue by coincidence, when in fact I have cancer progressing up my spine. I am having an MRI of my head on Saturday and a CT scan on Monday, and on December 2 I'll see Dr. ENT to get the results. Until then I just have to keep my fingers crossed and continue to croak, and to eat very, very slowly.
In the meantime, tomorrow I will have a planning session for radiation to my spine, which begins on Monday and goes for five days in a row. I may get a sore throat as a side effect, and the spine pain should subside within two to three weeks. If the cancer responds to treatment. And if all the pain is really coming from the cancer and not just my mechanical problems.
It does seem likely that the rib pain is from cancer, since it feels just like Dr. Lee warned me it might: like an increasingly tight vise around my middle. However, they are not radiating the ribs, just the spine (vertebrae T1, T2, T3, C6 and C7), in case the rib pain is simply radiating from the spine. I seriously believe there is a bone met right on my lower left rib which is causing the miserable pain just below, possibly pressing on my spleen (the nurse practitioner agreed), but when I tried to tell the radiation oncologist that, she rather patronizingly explained that she had other patients to see and in so many words suggested I should not go on about my pain.
A wonderful, accomplished friend was with me, and at that point she started to cry, possibly because she thought I was being dismissed, but I'm so used to that attitude from doctors I didn't even notice it. My friend said earlier, "You know, I'm not smart enough to get cancer," reeling at how much information I have to sort through and keep track of. And her father was a doctor.
I also have a metastasis on my lower sacrum near the left pelvis (that's where they took the bone biopsy sample, which was malignant), but they won't radiate that yet because it's not causing any discomfort whatsoever.
So...my mood has been shaky. It does feel like the rest of my life will be like a macabre game of Whac-a-Mole. I have experienced loss of hope for the first time since this all began, and trying to control the pain hasn't helped. Last Thursday the nurse practitioner agreed to refer me to the pain management clinic (readers of this blog may have noted that, despite my GP's commiserating with me recently about my not having been referred to pain management, he still allowed me to leave his office without referring me!). She said she wrote a dire letter because the waiting time can be quite long -- and suggested that in the meantime morphine would be better for me than Tylenol 3s. I guess she doesn't want me taking so much acetaminophen because it's hard on the liver and kidneys. I tried the morphine for three or four days, and it didn't really provide much pain relief, and left me feeling foggy and weak. It made the constipation worse, too. It certainly made me sleep -- like I was in a coma. I didn't like it at all, but I didn't have any Tylenol 3s left, only some pure codeine pills, which should be better for me, too, but they didn't seem to do the trick, either. So I managed to get my hands on more Tylenol 3s, and feel pretty good for about two and a half hours out of every four, plus I have to set my alarm to get up and take pills every four hours in the night. The T3s make me dopey, too, but it's a nice dopey rather than an "I'm dying" dopey.
Pollyanna moments:
- My friend Liz brought over, among other yummy goodies, a homemade banana cream pie, which went down very well.
- Diane took Mom and me to Rosetta McClain Park and the Scarborough Bluffs during that lovely fall sunshine on Sunday.
- I did not beat Liz at Lexulous, but made a good comeback after her 99-point EPOXY!
- Mom came along to my seniors' writing group, and also helped me rehearse some of the exercises.
Tuesday, November 03, 2009
Waiting game
My gastro doctor called my oncologist and now she is concerned that the weirdness in my throat could be cancer-related and has ordered an MRI of my head and a visit with an ear, nose and throat doctor. God knows how long it will take for that to happen. (I was a little pissed when Dr. Lee suggested I should have called her about this ages ago -- I went to my GP twice and he didn't seem too concerned, and he certainly didn't suggest calling Dr. Lee.) The inability to swallow easily is not worsening but it hasn't been getting any better (though -- dare I say it? -- I think I am swallowing a little more easily this morning -- but maybe it's been like this every morning).
This development is upsetting, on top of the pain I'm dealing with, and I'm fascinated by the games I have to play with my mind to keep on top of my mood. I realize that the rest of my life, however long or short, is going to be like this: new symptoms that could herald further metastasis, more waits to have tests, more waits for test results, good or bad news. How do I live with this every day? I have to learn not to dwell on the unknown, to worry about bad news when it actually arrives and not before.
So I'm in great need of Pollyanna moments: The biggest one occurred yesterday when I met my seniors' memoir-writing group for the first time. It's a pretty small bunch, but they seem eager and excited, and so am I. Teaching is the only work I've ever done that takes me completely out of myself -- for the duration of a class my problems completely vanish from my mind. Despite my hoarse voice, I got through the two hours without too much trouble. In the past, the standing part of teaching was always problematic because I had sciatic pain for so long. Now standing is the only comfortable position for me, so physically I'm almost better suited to teaching than I ever was before.
I can still walk easily and I'm trying to make a point each time I do of really enjoying it, knowing how quickly the ability to walk could disappear.
Almost froze my butt off on Halloween night; we had about 125 kids as usual, and because my front door is up two sets of steps, I took up a post on the lower steps to shell out, sporting my fluorescent witch's hat, and it was bloody cold. It actually felt very Halloweeny: lots of wind blowing the leaves around in the gloom. I've noticed that my neighbourhood, a working-class area within the city that goes all out for Halloween, with music and sound effects and fake smoke, etc., is now home to a lot more young families than it was when I moved here 14 years ago; there was an unusual number of children under five being escorted by their parents (and they have a hell of a time getting up my steps, which is why each year I'm sitting farther and farther away from my house when I give out treats.) It appears that people stay in the small homes around here just until their kids get old enough for nursery school, then they decamp to a bigger place in the suburbs or a smaller city. Unlike some of my older neighbours, no one is willing to raise a family in a two-bedroom rowhouse anymore. As a result, dwindling numbers are threatening the local elementary school and we have very few older children living around here.
A couple of our ex-neighbours, who have since moved to the suburbs but miss the raucous Halloween on our street, dropped by to participate and it was great to see them.
The next day my family gathered at my brother's to celebrate my oldest nephew's 14th birthday, and it was the first time in a while that my Dad had travelled any distance to attend a family event. He was mightily confused, and the effort it took to get him there was onerous; I don't know if Mom would do it again. Still, he really seems to enjoy being around large family groups even if he is perplexed, and that's nice to see. He always did like family parties.
This development is upsetting, on top of the pain I'm dealing with, and I'm fascinated by the games I have to play with my mind to keep on top of my mood. I realize that the rest of my life, however long or short, is going to be like this: new symptoms that could herald further metastasis, more waits to have tests, more waits for test results, good or bad news. How do I live with this every day? I have to learn not to dwell on the unknown, to worry about bad news when it actually arrives and not before.
So I'm in great need of Pollyanna moments: The biggest one occurred yesterday when I met my seniors' memoir-writing group for the first time. It's a pretty small bunch, but they seem eager and excited, and so am I. Teaching is the only work I've ever done that takes me completely out of myself -- for the duration of a class my problems completely vanish from my mind. Despite my hoarse voice, I got through the two hours without too much trouble. In the past, the standing part of teaching was always problematic because I had sciatic pain for so long. Now standing is the only comfortable position for me, so physically I'm almost better suited to teaching than I ever was before.
I can still walk easily and I'm trying to make a point each time I do of really enjoying it, knowing how quickly the ability to walk could disappear.
Almost froze my butt off on Halloween night; we had about 125 kids as usual, and because my front door is up two sets of steps, I took up a post on the lower steps to shell out, sporting my fluorescent witch's hat, and it was bloody cold. It actually felt very Halloweeny: lots of wind blowing the leaves around in the gloom. I've noticed that my neighbourhood, a working-class area within the city that goes all out for Halloween, with music and sound effects and fake smoke, etc., is now home to a lot more young families than it was when I moved here 14 years ago; there was an unusual number of children under five being escorted by their parents (and they have a hell of a time getting up my steps, which is why each year I'm sitting farther and farther away from my house when I give out treats.) It appears that people stay in the small homes around here just until their kids get old enough for nursery school, then they decamp to a bigger place in the suburbs or a smaller city. Unlike some of my older neighbours, no one is willing to raise a family in a two-bedroom rowhouse anymore. As a result, dwindling numbers are threatening the local elementary school and we have very few older children living around here.
A couple of our ex-neighbours, who have since moved to the suburbs but miss the raucous Halloween on our street, dropped by to participate and it was great to see them.
The next day my family gathered at my brother's to celebrate my oldest nephew's 14th birthday, and it was the first time in a while that my Dad had travelled any distance to attend a family event. He was mightily confused, and the effort it took to get him there was onerous; I don't know if Mom would do it again. Still, he really seems to enjoy being around large family groups even if he is perplexed, and that's nice to see. He always did like family parties.
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