Some relief!

After the freezing from the nerve-root injection wore off on Wednesday night, my leg hurt as usual, but over the past three days the pain has diminished considerably. Yay! My leg still feels weak and I get tiny spasms all the time, something like restless-leg syndrome, so I still have difficulty falling asleep, but when I do I am able to sleep for six or seven hours with the help of codeine.

I went off the amitriptyline and the next day felt slightly more energetic and in a better mood, and my food tastes a little better, so I hope I can stay off that one. Still, when I go for a walk I'm moving at about half my usual pace, and I continue to have difficulty getting up the stairs.

Pollyanna moment:

• Yesterday I found the energy to bake some Christmas cookies, so I didn't go to my brother's early-Christmas dinner empty-handed.
• I still can't lie still for long periods of time, but I can get a little reading done here and there.

The root of the problem?

This morning I had a nerve-root cortisone injection in the base of my spine in an attempt to resolve the sciatic pain that's been making me crazy. I've slept through the last couple of nights, but only because of heavy drugs. Not only does my leg hurt, but it's getting weak; I'm having trouble climbing stairs, and when I crouch down I have trouble getting up again.

So, since the injection I feel pain-free, but I've been warned that may be just because there's freezing in there. We'll see how I feel when it wears off. I'm actually putting my hopes on a placebo effect. Apparently, the procedure is diagnostic as well as potentially therapeutic; if I get some relief, then they know they've hit the right spot, and if they later decide to do surgery (the effects of the injection don't last) they know where to work.

I've just read some accounts on the Internet about people who had nerve-root injections and three days later had wildly increased pain! Oh, I should never have done that search.

The procedure wasn't very pleasant, but it didn't hurt much. The doctor was a student, which worried me a little, but as soon as she hit an obstacle, she fetched a senior radiologist, who guided her through the process expertly and in great detail. They inserted needles using an X-ray to guide them. Three times they hit something that hurt, and when I hollered, they asked if the pain was in my back or down my leg. The fact that it was in my back was good, I gathered; if it had been down my leg it might have meant they were damaging the nerve itself. The technician who assisted during the whole thing was a friendly and soothing guy; all in all, Jocelyn and I were impressed by the staff's kindness. And I, of course, was impressed that Jocelyn was kind enough to accompany me.

I still have no appetite. I do hope that I can start cutting down some more on these drugs. Reducing the amount of codeine I've been taking has resulted in some bouts of extreme agitation and jumpiness. I had an expert reflexology session two days ago and had to cut it short because I felt so antsy on the table I couldn't relax or lie still. I guess that's withdrawal.

Pollyanna moments:

• Jay visited and serenaded me accompanied by his guitar. It had been a long time since I'd heard "Scarlet Ribbons" -- what a sweet song.
• Although it's been very tiring to get through my seniors' writing workshop sessions, I've enjoyed them, and I've been impressed by my participants' hard work, and their patience and understanding when I'm not well.

Maintaining

I'm not sure how to describe the past couple of weeks. I've hit a very low point in my life. The inability to sit or lie still because of sciatic pain in my leg makes it difficult to read or write, so this post won't be long. I've lost 25 pounds; it's hard to say how much is anxiety, how much is damage to my esophagus from the radiation treatments and how much is aversion to food because it's so hard to swallow. All I can eat comfortably are soft foods, and I have a raging thirst. Water is hard to drink, so I eat a lot of popsicles. I am still so exhausted I have to lie down after I climb a flight of stairs.

Pollyanna moments:

• My book club friends met at my house and did all the setting out and cleaning up in the kitchen. It was a little overwhelming, but it helped to make me feel like I was in the real world.
• When I went out to some medical appointments, I did a little Christmas shopping, moving very slowly, and that, too, made me feel like I was part of the world instead of just wearing a track in my hardwood floors all day and night.
• Barbara Z. arrived at my door with a huge teddy bear, perfect for hugging.
• Chuck put up my pathetic little string of Christmas lights in the porch and fixed my door lock.
• Some of my coworkers showed up with wonderful soup from Whole Foods, and fruit popsicles.
• Hugh sent me DVDs of The Monkees TV series.
• Liz keeps cooking me wonderfully rich foods and driving me hither and yon. People have been so kind!

More good news

Well, after scaring the pants off me for the past month, try as she might my oncologist could find nothing sinister in my scans that wasn't already there two months ago. All that's in my skull is a brain, and my spine is unchanged: dotted with cancer. Nothing in my liver or lungs.

As for why I feel so lousy, she agrees it's a combination of radiation side effects, too much medication and depression. She prescribes a vacation. And will probably start permanent chemo in January. She is encouraged that nothing is progressing, so although it's still incurable Stage 4 cancer, we're not at the death-is-imminent phase just yet.

I know I should be doing cartwheels about that, but if this is what "death-is-not-imminent" feels like, I sometimes wish it were imminent after all, because feeling this ill is not the way I'd hoped to end my days. However, here's hoping I'll feel a little better soon. I'm pretty sure the radiation is working; I've stopped taking Tylenol and cut back on the codeine. But the sciatica is driving me nuts and making it hard to sleep, I feel nauseated and woozy and everything I put in my mouth tastes and feels like cardboard.

I asked Dr. Lee if I had heard her correctly when she suggested that cancer would take advantage of compromised bone. Yes, she said. So, I went on, my taking Arimidex for two years, which may have caused my spine to collapse, may therefore have made my cancer spread instead of impeding it. She looked a bit stricken and offered only that there are now trials ongoing that have patients alternate Tamoxifen and Arimidex.

Meanwhile, I asked, should I keep taking Tamoxifen? We went through the usual debate about how much estrogen-sensitivity my cancer has, while I pointed out for about the third time that she was going to do a pathology review of my tumours, which she finally managed to locate. Turns out the biopsy of my lower spine showed no estrogen-sensitivity, but the tumours they removed from my armpit in January (which the lab didn't bother to even test until I bugged Dr. Lee and she bugged the lab in October) were estrogen-positive. So I'm glad I pushed to go back on the Tamoxifen. I think.

Whine over.

Pollyanna moments:

• I can now swallow a mouthful of water without it coming out my nose.
• I can now wear tons of clothes I haven't been able to do up in years.

Some good news for a change

I saw the ear, nose and throat specialist again today (wonderful, wonderful doctor), and she says the CT scan of my neck shows nothing to be worried about. She examined my vocal cord again and says she thinks it's working a little better and would like to wait a while to see if the paralysis goes away on its own. Interestingly, she saw another patient recently who is undergoing cancer treatment and suddenly got a paralyzed vocal cord unconnected to the cancer, and she mused that something in the treatment must do something weird.

So I'm delighted about that, though I'm not sure how much longer I can stand not being able to drink water without choking. I nearly coughed up a lung yesterday morning as I worked my way through my gazillion morning pills. And here's something anatomically fascinating: the doc confirmed my suspicion that my recent inability to bear down -- meaning I don't have the usual oomph required to cough, shit, or get up from a lying-down position, or, I suppose, give birth -- stems from my inability to create a vacuum in my abdomen by completely closing my voice box (or something like that). Who knew?

The other question is: why did they radiate my neck if there is no cancer in my neck? I looked up side effects for neck radiation, and found out it causes the changes in taste I'm noticing -- sweet things taste bitter, for example. Apparently, the amitriptyline I'm taking for nerve pain leaves a bad taste in the mouth, too. It's not helping my appetite.

I finally gave in and bought six bottles of Ensure, chocolate flavour. The symbolism of having that meal-replacement stuff in my home is overwhelming; I associate it with imminent death. But there you go.

Anyway, I feel absolutely shitty, physically, but happy to get these results. Next step: tomorrow I'll see my oncologist and find out if anything weird showed up on my torso and brain scans.

Onward and upward....or sideways...or something.

One damn thing after another

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!

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.

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.)

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!

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:

• 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.

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:

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.

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.

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...

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.

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:

• 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.

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.

Top end-oscopy

What a weird week. This condition that started two weeks ago has simply got worse: when I swallow water, it goes up my nose, and I'm having huge difficulty getting food down, as well. I make horrid snorting noises while trying to eat and drink; it's as if I can't get the food past a lump of something at the back of my throat. My voice has become very hoarse this week, but I don't have a sore throat or sniffles or anything cold- or flu-like; I can breathe easily through my nose. I often get a post-nasal drip in the fall, and this seems to be a new twist on it.

I had already made an appointment to see a gastroenterologist about the indigestion I've been experiencing (and Dr. Lee wondered if I had an ulcer), which took place Wednesday, and he agreed the swallowing thing was of concern and was able to fit me in for a gastroscopy the very next morning. This involves putting a camera on a tube down my esophagus to examine it and my stomach and duodenum. (After wandering around the hospital at 7:45 a.m. trying to find the right department, I finally learned that "endoscopy" is a blanket term covering both gastroscopy and colonoscopy: scoping at either "end," a nurse suggested helpfully.)

I'd never had such a test before, but they gave me so much sedation that I scarcely recall lying down on the table. First they sprayed my throat with anesthetic that was horribly bitter (even worse than the bitter taste I have had in my mouth since this condition began). They started the sedative in my IV while I was sitting up; I have vague memories of being conscious of something happening and the next thing I knew I was in recovery. I didn't even have a sore throat. Finally the doctor came around and said he could find nothing sinister going on -- no tumours, no ulcers. "Then why can't I swallow?" I rasped. He did see some white spots in my throat somewhere and suggested I needed to see an ear, nose and throat specialist, which he said he'd set up.

I also asked the doc why I have this pain just under my ribcage and he told me it has nothing to do with my digestive tract or stomach. I asked him if he was sending anything for biopsy that I should call about in a week or two, and he said no. Later, a nurse showed me on the chart that routine samples had, indeed, been taken for biopsy. Go figure.

I don't know how much longer I can put up with this, so I'm going to see my GP today and see if I can talk him into trying some antibiotics. It must be an infection of some sort.

Well, I had wanted to lose some weight.

Not feeling very Pollyanna-ish these days. Maybe it's what the ads used to call "logy and sluggish." I still have pain that the T3s don't take away; now the right side of my spine hurts when I breathe. But I'm sleeping better.

Pain trek

Everything came to a head on Thursday morning; I dragged myself to my Healing Journey workshop at Wellspring and felt overcome by depression and panic. Luckily, I was surrounded by wonderful counsellors, who let me cry and vent in my small group. One of them connected me with another who has a lot of experience with pain management, who called me at home and stressed that I had to step up the pain meds. I should have had enough brains to do this on my own, but I've just been so stubburn about withstanding the pain until the last possible moment, waiting eight hours before taking more Tylenol 3s, prejudiced against the idea of taking opioids, afraid of more constipation. The counsellor convinced me to stay ahead of the pain and take the T3s every four hours regardless, and that night I slept most of the night, getting up only once to take pills; last night I slept pretty well (on a foam wedge with tons of strategically placed pillows and a heating pad) and pretty late. What a relief.

The counsellor expressed surprise that my doctors had not directed me to a pain management specialist, and I guess I'm surprised, too, just as I'm surprised at how thoroughly I fell apart after three nights of misery.

Yesterday I visited a massage therapist for a lymphatic massage -- Dr. Google tells me that I have "truncal" lymphedema, because my breast and the tissue around it are swollen and uncomfortable -- but it didn't amount to much because lying down prompted this pain just below my ribs that makes me nuts, and I had to stop. But I walked the 30 minutes to the therapist's office with no trouble at all! Later I went to my family doctor and we kind of kissed and made up -- I told him that I have been feeling not well cared for, and that I've developed that stupid guilt we sick people get about going to the GP too often and being perceived as a hypochondriac pest. He was very kind and assured me that I should be coming by more often. He says there is a pain management clinic at my hospital and that there are slow-release versions of pain meds, which would really make my life easier. Yesterday I took two T3s and promptly forgot I'd taken them, then took more. I was flying. So it would be nice if I didn't have to take them every four hours.

In the meantime, I am now dealing with a brand-new set of symptoms that involve difficulty swallowing -- something else to fret about! At least I am sleeping, though I'm terribly dopey. For the first time, the ache in my ribs has begun to resemble what Dr. Lee told me bone mets would feel like; it's like something is gripping me around my middle. I feel like I have my underwire bra on, but two sizes too small, even when I don't have a bra on at all.

Let's see if I can come up with a more amusing angle to report from: Healing Journey involves some visualization exercises, which I'm not convinced will work, but I'm not convinced they won't, either, so what the hell. We're supposed to imagine an "inner healer": a presence of some sort, whether animal or human or a ball of light or whatever works for you. You kind of talk things over with this entity -- I haven't gone into it very far yet. I don't have much of a visual imagination, so I was struggling to come up with something, when our counsellor suggested it could be something or somebody very powerful. For some reason the first thing that sprang into my head was Commander Data from Star Trek: The Next Generation. I'm a fan, I must confess, and I watch every day at 4 p.m. (though I'm shocked at how crappy the first season seems now). Many years ago my brother (I think) gave me a little Commander Data figurine as a joke Christmas gift.

So I plan to make Data my inner healer. I like his combination of super-human strength and gentleness and his non-judgmental nature. I'm supposed to go to a place in my head that feels special, and find my inner healer within a structure, for example, a wise old woman inside a cabin. So get this: Commander Data in a shuttlecraft on the banks of the Spanish River. If nothing else, it makes me laugh.

NIghtmare on my street

Three nights of not being able to sleep because I couldn't find a pain-free position took its toll: by the time I arrived at the hospital yesterday morning for a bone biopsy I had been reduced to a snivelling baby. A kindly nurse said it was OK to take some Tylenol 3 before the procedure, which was itself simple and painless, but having to lie down on my stomach for it made me wonder why they gave me intravenous sedation after I'd got on the table instead of before; in seconds I went from weeping and screaming to vowing quietly to myself that I'd hand over the keys to my house to anyone who could supply me with a steady stream of liquid Valium. For half an hour life was indeed blissful.

Meanwhile, lying on a cranked-up hospital bed for a while inspired me to create a similar incline on my bed using a foam wedge form turned upside-down, and I was able to sleep later in the day for two whole, wonderful hours, and again for four straight hours during the night. It's now 5:30 a.m. and I'm paying with increased stiffness and pacing the kitchen in between writing a few sentences here and there, but the gift of sleep has been precious. It's bad enough to suffer insomnia but to be desperately sleepy and not be able to lie down is a torture hard to describe. And a new one for me.

Between securing a few hours of shut-eye and the Tyelenol 3s, I am determined to conduct the memoir-writing workshop for any seniors who show up on November 2, and I will be bright-eyed and in good humour! I promise.

Pollyanna moments:

• My fridge is full of Indian food from my favourite local restaurant, courtesy of three buddies who brought it plus their hilarity to my house on Wednesday night.
• Songs for cancer healing in the night: "Hard Sun" by Eddie Vedder; "Zombie" by the Cranberries; "Tin Pan Valley" by Robert Plant.

Pain, my friend

Dana Jennings, who blogs about his prostate-cancer ordeal in The New York Times, wrote an interesting post about pain. He writes:

I have no patience these days with the Nietzschean cliché, “That which does not kill us makes us stronger.” I’ve found that the deepest pain holds no meaning. It is not purifying. It is not ennobling. It does not make you a better human being. It just is.

I've been thinking a lot about pain, not surprisingly, and I'm intrigued most by how many varieties of it my body can throw at me. Like colour or music, pain can be measured on different scales: intensity, texture, location, duration, type (ache, stab, burn, spasm, throb). What amazes me is how I can tolerate some pains and not others, but intensity is not always the determining factor.

Off and on since my 20s, I suffered from sciatic pain stemming from post-scoliosis arthritis (and spondylolisthesis, to be technical about it) at the base of my spine. At times it was excruciating. The location of the pain was hard to pinpoint; eventually I was able to say, "It's in my outer right thigh," but for the longest time it seemed to simply hover somewhere around my leg. It felt as though it stemmed from my brain as much as from anything.

The triggers were simple and predictable: it hurt when I stood in one place. Leaning against something, walking, sitting and lying down took the pain away (much later, though, walking became difficult, too). I got so used to it that even during periods when it wasn't bothering me (some of which were gratifyingly lengthy), I retained a pain reflex: when forced to stand in one spot, I automatically and unconsciously groped for something to lean against or hold onto (and you thought I was just overly friendly).

At its worst, the pain was distracting, and, especially in my late 20s and early 30s, it constrained my social life because it made attending parties uncomfortable -- I always had to sit down, which made mingling impossible -- and listening to music in bars meant having to arrive early enough to secure a seat and hope the audience didn't become enthusiastic enough to stand up en masse and ruin my view. When I had to converse with someone while on my feet, I sometimes had a hard time concentrating on what my companion was saying. It was as though a little pain demon sat on my shoulder and shouted in my ear, "BLAH-BLAH-BLAH-BLAH! PAY ATTENTION TO ME!"

But I never took pain medication for it. The couple of times I tried an analgesic of some sort, nothing happened, so for 20 years I just withstood it. After a while, I began to think of my pain as an entity, a companion that I simply had to lug around with me. I learned to observe it rather than experience it, I suppose. Perhaps this was possible because it was easily relieved by sitting down.

Dana Jennings writes that he's "been surprised by the degree of pain you can become used to."

... One side effect of all these operations is that common day-in-and-day-out bumps and bruises don’t get much of a rise out of me. Stubbed toes and headaches, spider bites and bee stings? Whatever. The bracing prickle of alcohol sloshed onto a cut or a scrape actually feels pretty good to me. And after all the siphoning, and replenishing, of my blood over the years, I don’t flinch at needles.

I felt pretty much in control of my pain for a long time. Then the worst pain of my life arrived. This gets into the too-much-information department, but I suppose if Jennings can write about the removal of his prostate and his rectal bleeding in The New York Times, then I can admit that I had an anal fissure, which was eventually corrected by surgery, but not until I'd suffered two years of on-and-off hell. The details are too horrible, but suffice it to say that my neighbours may have suspected I was giving birth each morning in the bathroom (UPDATE: I realize now that the previous sentence contains a highly misleading description of this malady's actual symptoms. God, this is awkward; in any case, the pain probably does NOT occur in the bathroom). I was loud and I was shocked; it was unbelievably intense. But the attacks were short-lived, if daily, so taking a painkiller didn't seem sensible. Avoiding cheese and sitting on a cushion was the best I could do until (this sounds familiar) I recognized the symptoms in a book I stumbled upon while using the office of the Maclean's health editor during a weekend proofreading job and realized I'd been misdiagnosed; a skilled surgeon fixed the problem permanently, to my everlasting relief.

So my experience with painkillers has been minimal. The only thing I ever took them for was headaches, which luckily I'm not usually plagued with. But that brings me to my point: why can we tolerate some kinds of pain and not others? A moderate headache will send me to the Motrin bottle, or even codeine, but I never took a thing for my sciatica. I suppose I feared using potentially dangerous drugs for a chronic condition; long-term use frightened me. I was also pretty sure nothing would work, and I wouldn't have known when to take any painkiller that had short-term effect. No doctor ever recommended any drug until the lower-back thing got a lot worse and my GP suggested an NSAID, which I rejected.

It wasn't until my upper spine collapsed a year ago (and my lower-back problems completely vanished, incidentally) that pain became so intolerable I had to resort to drugs. But even then, because I got relief from lying down, I didn't go overboard. Now I am popping up to six Tylenol 3s a day. Can I honestly say that this pain is worse than pain I've had in the past but didn't take drugs to alleviate? I'm not sure it is. What seems to make me perceive it as worse is that it's in my middle; somehow that feels more debilitating, and it also tends to make me feel slightly sick to my stomach. Plus, now everything has reversed, the pain is at its worst when I'm in a resting position, and somehow that's just not tolerable.

Or maybe I'm just turning into a wuss? Anyway, last night was pretty bad in the sense that I could not find a comfortable place or position to sleep in and so spent much of the night listening to music -- at one point dancing with remarkable abandon to Michael Jackson tunes in my darkened kitchen, iPod in hand, the Big Dipper looking down on me through the window. The scary part was that two doses of Tylenol 3 did not seem to have any effect at all, and I'm worried that I'm developing a tolerance. This on top of the constipating effect that painkillers so kindly deliver. So today I have been trying to go all day without any pills, and so far just feel kind of miserable. Not screaming miserable, just occasional-moan miserable.

It helps a little that I have a little curly-haired dog named Winston lying in my lap. But that bottle of pills in the kitchen is battling with old Nietschze.

Dr. Cynthia

My nightly perambulations plus Tylenol 3s plus a very satisfying session with the relaxation tape have failed to relieve the pain enough to lie flat, so I'll use this pre-dawn time to catch up here. This week I am especially frustrated with my doctors. I saw my oncologist and got the all-too-frequent "Why are you here?"; she had forgotten that she'd asked me to come back in a month, and had not reviewed the pathology of my tumours as promised. My bone biopsy had still not been booked, and I can't see the radiation doctor until that happens. At every turn, I feel as though nothing occurs without persistent reminders and phone calls from me to doctors, secretaries, technicians, etc., and various treatments and options are only chosen because I saw something on the Internet and mentioned it to the doc. That's an exaggeration, I know; I have found in the past, when I get a chance to read doctor's notes, that they're not as clueless as they sometimes sound and have heard more of what I've told them than I thought they did, but I still feel as though I am my own doctor a lot of the time. This is also true with my GP, whom I never even bother going to anymore.

Dr. Lee phoned the pathologist while I was in the office to clear up the discrepancy (which as far as I could tell only I had noticed) between the report that said my tumour was 30 percent estrogen-receptor positive (the initial needle biopsy) and the one that said it was less than 10 percent ER-positive (the actual surgery). It turned out that the surgery report only measured the pathology of a tiny tumour that was removed from my breast; the big guy in my armpit was not measured at all! From what I gathered, they can go back and do it. In the meantime, Dr. Lee said even at 10 percent it is worth taking some hormone therapy after all, and she suggested I take Letrazole because I hadn't reacted well to Arimidex. "Why wouldn't you prescribe Tamoxifen," I asked, "since it doesn't degrade the bones and I tolerated it so well before?"

"OK, we'll try Tamoxifen," she said. Interestingly, yesterday's Globe ran a story about a test available in the U.S. that can tell you if you're among a small percentage of women for whom Tamoxifen doesn't work. Doctors in Canada are divided on whether it's accurate. One was quoted as saying that if you feel great on Tamoxifen -- in other words, you have no side effects, which was true for me during the two years I took it -- it probably isn't working. I wonder if I should pay the $500 for the test. Something else to tell my doctor about!

In the meantime, yesterday I found out I'm booked for the bone biopsy on Wednesday the 21st. Oh, joy, another 7 a.m. call in day surgery. I just want to get on with this so I can find out if more radiation is in the cards, and keep my fingers crossed that it will take away this pain.

My mood has been pretty good, though; I like this brisk fall weather, and during the day I feel OK if I can walk around a lot. I am enjoying my Healing Journey workshop at Wellspring; it's good to get out of the house and be with other people in the same boat (yesterday I quietly passed my plastic hand fan to a poor sweating woman on the couch next to me), and I like the meditation exercises and journaling.

Pollyanna moments:

• We had a yummy Thanksgiving dinner at my sister's, and I was the recipient of the 28-pound turkey carcass (well, the turkey was 28 pounds, not the post-meal carcass, but it was still a bugger to cart on the Greyhound bus, and I was hard-pressed to fit even a fraction of it into a soup pot, but I got a very nice broth out of it as well as enough meat for sandwiches all week).
• I have decided that, illness or no, I should proceed with a goal that matters a lot to me: I agreed to run a memoir-writing group for seniors as a volunteer at my local community centre, Applegrove. Whether we'll get any participants out is another story: if you know of any east-ender elders who would like to jot down some stories as a legacy for their descendants, point them in my direction! It would take place from 1 to 3 on Monday afternoons starting November 2, if it happens at all. I think this would be something I can handle; I'm tired of saying, "When I'm well, I'd like to do this." I may never be well again. But until I'm so unwell I can't leave the house, I want to do something useful.
  

Report from the wee sma's

It's been a rough week; the pain has me up very early each morning, pacing around my kitchen (I'm afraid if I pace on the hardwood floors I'll wake up my neighbours; the walls are pretty thin). During the early part of the day, the pain is often manageable, especially if I walk around (what a difference from the spring!) But as the day wears on, it becomes unbearable. I am swallowing Tylenol 3s like candy, and I gave in and restarted the Naproxen. Tonight I had lots of stomach complaints, too, not surprisingly. Felt pretty rotten.

It's 3:15 a.m. right now. I always thought that an inability to sleep because of cancer pain would be my worst nightmare. It's bad enough losing sleep and being in pain, but I dreaded the loneliness and fear that could rear their heads in the silent darkness. But I'm finding it almost calming to be awake at this time. I guess it's because during the day, despite not working, I always feel busy and pressured; at night, aside from sleeping, there's nothing I need to be doing, so I feel more relaxed. And I know I don't have to perform in the morning, so I'm not panicked. It's a time for reflection, as well, and a time to savour being alive, oddly enough. So even when the pain subsides, I can still be found at this hour doing crossword puzzles or reading The New Yorker or meditating in the dark. Of course, if the pain doesn't subside, I get pretty cross.

I believe I've mentioned in this space the blog of Tasha Westerman, a spirited and generous woman in Calgary who is living with a triple whammy: she has breast cancer, her husband has brain cancer and her best friend has leukemia. And she has a small son. She is in the news a bit for her involvement with Rethink Breast Cancer, the charity that targets younger people. Anyway, her husband is being kept alive by the drug Avastin, which is costing them a fortune, and people have been donating money to keep him going. If you're interested in what seems like a worthwhile charity effort, here's Ryan's blog with details on how to contribute.

Sometimes I feel sorry for myself because I don't have children or a husband to see me through this, but sometimes I think it would be worse if I had to worry about leaving a family behind, especially little ones.

Pollyanna moments:
Hmmm...

• Got to babysit young Natalie for a short while last night and found I was thankful I don't have to practice long division on a regular basis!
• Read Dr. Robert Buckman's autobiography, Not Dead Yet, which was only moderately funny; still, I nearly wet myself reading his account of his first time attending a birth, during which he was called upon to translate the senior physician's words into Italian, despite only rudimentary knowledge of Italian. Buckman's shtick is using humour to help one live with illness, and as I clutched my poor middle with one hand while his book was in the other, I hoped my laughter was helping me in the long term even though it hurt like the devil in the short term.

We interrupt this whine...

...to bring you a plug for my friend Lina Medaglia's recently published novel. Lina is a member of my book club and a professor at George Brown College. For years we knew she was slaving away on her PhD thesis, which we learned took the form of a novel based on her family's history of coming from a small village in Calabria, Italy, to Toronto in the 1960s. Eventually she published it with a small press in Toronto, Innana Publications, and of course we chose it as a selection for our club because we love Lina. Little did we know what a superb writer we had in our midst.

The Demons of Aquilonia is a beautifully crafted tale of family secrets, small-town Italian life in the first half of the 20th century, the immigrant experience, the lives of women under the thumb of men and family strictures, as well as the lives of men under the thumb of their own oppressors. It addresses the question of what is better left behind and what will stay with you throughout your life. The plot is intricately woven and kept me turning the pages into the night.

It's hard for a small press to drum up any attention for a first-time novel, and I haven't seen any reviews of the book so far. So this is my little attempt to bring it some attention.

Ups and downs

Last week was a difficult one. I'm in a fair bit of pain; as usual, it changes all the time. The burning shoulder blade that was consistent for months but which was tolerable has given way to an ache in my ribs that makes it hard to concentrate on what's going on around me and only responds to Tylenol 3s. Meanwhile, I've stopped the Naproxen on the advice of Dr. Second, and the feeling that I've been bayoneted through my sternum and mid-back has returned. A few nights ago I couldn't sleep at all because of the pain, and the codeine did nothing to help; more nights like that would be hard to take. I made it through last night without any T3s, but I wake very early with the mid-back pain, which is only alleviated somewhat by getting out of bed and walking around.

On Friday, I went to see the spine radiologist at the hospital to get a full explanation of my CT scan. I laid out my history, and he said, "Do you have a medical background?"

"No," I replied, "I'm simply a long-term breast cancer patient." Later, when I clearly couldn't understand what he was doing his best to explain, I told him that I was not as smart as he seemed to think I was. He showed me the same thing Dr. Second explained earlier in the week; in January my spine looked grey on the film; now it's mostly white, not uniformly (which might indicate an osteoporotic spine being strengthened) but in splotchy bits. He kept talking about "bone change" and "bone reaction" being very clear, but it's still not clear to me whether the reaction, which is bone-building, means holes that were caused by the cancer are responding to treatment, or whether the bone-building represents new tumours. Has the last nine months meant improvement or worsening of the bone mets? I'm still not sure. Dr. Lee seems to think it's improvement. I got the feeling the radiologist is not so sure.

In any case, he is pretty convinced there's cancer throughout my spine, and after Dr. Lee arrived she went so far as to say she was 80 percent sure he was right, and ordered a bone biopsy. Both of them concurred that there is not much point in my having my spine surgically corrected if the pain is coming from the cancer (but how do they know the pain doesn't have multiple sources?) and that I should now be having radiation treatment to the bones. What pisses me off is the fact that the radiologist referred to my grey spine in the January picture as osteoporotic. When I began taking arimidex, the cancer drug that can weaken bones, in 2006, Dr. Lee ordered a bone density test. The test result said the same thing it's always said: very good result, but of course they only measured my hips; the spine was not measured because of the presence of metal rods. Another bone density in July 2008 said the same thing. But it seems clear now that a CT scan would have showed them a couple of years ago that my spine was weakening. Why did they rely on the bone density test, which was clearly inadequate?

I think Dr. Lee was a little sheepish that I did an end-run around her and went straight to the radiologist, who doesn't usually see patients, because I didn't find her explanation adequate, and also because she's been treating this cancer rather optimistically for the past eight months. And I'm sure she also thinks I've upset myself needlessly by asking to see the films.

She may be right. On Saturday morning I took the bus to Kitchener and wept the whole way. I just couldn't stop it. I don't do that very often, and my mom cheered me up when I got there. But I think I am in a difficult stage. I feel enormously better when I take the codeine pills, but it means my day is very up and down, both physically and emotionally. And my digestive tract is pretty gummed up!

I am not looking forward to the bone biopsy, nor to more weeks of radiation treatment.

Pollyanna moments:
Big hugs from my sister, chats with her lovely kids, whupping her partner at Scrabble, holding hands with my dad, laughing with my mom.

A watershed day?

Yesterday marked eight months since I had surgery on my armpit. And I think it marked the first day that I got definitive word that I have metastatic cancer, not just in my ribs but in my spine. I went to see Dr. Second, the hotshot orthopedic surgeon. He and his resident were very good to me, and, unlike my oncologist, displayed the actual CT scans I brought them and pointed out what has changed. Dr. Second told me back in the winter that he doubted I had cancer in my spine; he thought the evidence showed the vertebral collapse was in keeping with a mechanical problem, namely junctional kyphosis. But now there is sclerosis in the spine -- where my vertebra all looked black-ish on the film, now many of them look white. This, he says, means that there is bone-building going on, probably as a result of chemo and Zometa, which in turn means there was very likely cancer there to start with.

That is what Dr. Lee tried to tell me two weeks ago, but she didn't really make clear to me that she was talking about my spine -- she just read some of the report, which was Greek to me, and didn't show me any pictures. I just assumed the problem was only in the ribs, in any case.

I had a little weep in Dr. Second's office, but afterward I just felt relieved to have some kind of an answer. I guess my visit this Friday with Dr. Lee and the radiologist to review the films will drive it home even more clearly. Dr. Second was quick to add that there is a "good chance" of long-term survival with bone mets, and I have to concentrate on that.

He also implied that I might now require radiation to my bones, so I'm hoping to get an appointment with the radiation oncologist soon. She told me she really didn't think I had cancer in my bones and would not radiate until she had some definitive proof. Perhaps these new films will provide it.

In the meantime, for the past couple of weeks I've had a lot of rib pain; it's keeping me up at night, which is usually a sign of bone mets. It also hurts just under my left rib cage, and I don't know what that is. Lying down and sitting hurt the most; sometimes it hurts when I walk, though seldom enough to stop me from walking. Codeine seems to help, but it also makes me high. Dr. Second says I should stop taking the NSAID Naproxen, which I've had 1,000 mg of daily for about 10 months, because it will damage my kidneys. He says I should take Percocet! I can't imagine regular opioid use can be very good for me in the long term, either, but he seems to think it's preferable to the NSAID. God knows there are thousands of people walking around out there on big-time analgesics because they can't manage otherwise. Will I join their ranks forever?

Still, the question in my mind is: if my bones are actually getting better, why are my ribs hurting so much? Maybe I now know there is indeed cancer in my bones, but I still don't know how much of the pain comes from that and how much from my mechanical problems. It's probably both to some degree. Do I need radiation of my bones? Should I have spinal surgery -- would it make any improvement? Dr. Second warned me not to do it if I don't absolutely need to; there is a risk of paralysis and he's looking at more complex surgery than most fusions involve. He'd have to remove a whole vertebra, he says, partly in order to do a proper biopsy, as well as most of a couple of ribs. He'd fuse two or three vertebra, which means I would be even more inflexible than I am now.

How much pain is too much? I measure everything now against what it was like in the winter when my vertebra was fractured but not yet healed, and I could not walk for more than a minute or two. I guess just being miserable is not enough to warrant surgery, as long as I'm still ambulatory! At least when I couldn't walk I could get some relief when I lay down.

Next stop: the radiation doctor again. This really is turning into a full-time job. I can't believe a handful of people are still reading this blog; the merry-go-round I'm on, and may be on as long as I live, is getting mighty boring. I think it's time to start blogging about something more interesting, like the disintegration of my fingernails or the latest escapades of the raccoons in my backyard or the impact of the internet on daily newspapers ...

Some underused resources

I'm slowly gathering more opinions on whatever the hell is going on with my bones. On Thursday I dropped by the Managing Your Cancer Journey course at Princess Margaret Hospital. I've mentioned it before in this space: it's supposed to be a two-day course on consecutive Thursdays, but because it runs perpetually it almost feels like a sort of drop-in group; when I went to the two parts, there were people there who had been several times before. Yet you can hardly call it a group because barely anybody attends (apparently, said the social worker in charge, no participants had shown up at all the previous two Thursdays). Which is a shame, because it's an opportunity to have some time with Dr. Robert Buckman, the renowned oncologist/author/broadcaster/comedian/atheist. It amazes me that such a busy man takes time most weeks to spend an hour with the group. His c.v. makes you wonder if he's spread a little thin and perhaps more of a star than a doctor, but he sounds very knowledgeable to me, and he's enormously engaging and personable.

Anyway, because there was just one other person there last week, and she's a regular and a volunteer herself, I got to spend an hour discussing my case with Dr. Buckman, without any actual facts and figures in front of us, of course; he had to base his thoughts on what I told him. I learned that it's very common for cancer patients to be told that spots on their scans could be bone metastasis or could be something else, like arthritis. Based on what I told him, he said I probably have bone mets, but that it's true that I may never know. My CT report shows "lytic lesions," which are basically holes in the bone. Buckman says they're usually caused by cancer, though it's possible they're not.

What was confusing about my recent visit with my oncologist, the one I call Dr. Lee, was that the report from my CT scan referred to "worsening sclerosis" in my bone lesions. She fretted that I would be upset by this wording, and was frustrated by the radiologist's choice of language; she tried to explain that "worsening sclerosis" is not a bad thing. Sclerosis, she said, means the lytic lesions are filling in, probably due to the chemo and the Zometa (bone-strengthening injections I've been having). Dr. Buckman confirmed this interpretation, but also confirmed that if the bone is showing signs of being fixed, it means there was cancer there in the first place. And because I never had a bone biopsy, I have no baseline to compare to. Still, he didn't recommend a bone biopsy -- said it's often not conclusive (not to mention extremely painful).

Dr. Buckman was pleased to hear that I'm taking the Zometa, which he says not enough oncologists are using. While it has long been known to rebuild bone, he said it's only in the past five years or so that they've learned it can also attack cancer cells. He added that I'm in really good hands with Dr. Lee, despite her propensity for thinking out loud -- said she was smarter than him.

The best news was that he contradicted the 20% figure I found in an online medical article, and says that 50% of patients with what is referred to as "bone-only" metastasis survive longer than five to seven years.

He also told me that it's worth my taking a hormonal therapy such as Tamoxifen even if my estrogen-receptor sensitivity is as low as 10%.

And he liked my idea of having a radiologist sit down with me and Dr. Lee to explain my scans, which is going to happen on Oct. 2, although apparently the radiologist I connected with deals only with spines and not ribs! Anyway, it's a start.

At a certain point, I'll have to give up on getting an answer, but not before I've exhausted all avenues. Dr. Buckman suggests I not make any big moves like selling my house or quitting my job for another year. Meanwhile, my rib pain has increased, especially when I lie down, and I am swallowing too much codeine (which I like too much). It almost feels like a twisted bowel or something, and along with my swollen breasts and armpit (the scans showed a large seroma, a post-surgical collection of fluid that, according to what I've read, should have been absorbed into my body by now; it's been eight months since the operation) and the numbness and pinching makes me awfully uncomfortable.

Pollyanna moments:

• Yesterday my brother and his boys invited me to see It Might Get Loud, the film about guitars featuring The Edge, Jimmy Page and Jack White. It was a little long but great fun; Jimmy Page is now an unexpectedly healthy-looking old geezer, with a winning smile, and, as my brother pointed out, it was a hoot to see the worshipful looks on Edge and Jack White's faces as Page cranked out the riffs from "Whole Lotta Love." Sadly, the trailer gives him short shrift.
• On Friday morning, I got on my bicycle for the first time in over a year and drove down to my special spot on Ashbridges Bay. It didn't hurt too much more than it does when I walk, but for the first several minutes it felt weird and disorienting to be going faster than my legs could carry me. It may be my only bike ride of the year, and I'm so glad I went. Lake Ontario is normally quite calm, but on Friday there was enough wind to stir up some mighty surf, and sitting on the rocks getting spray spots on my sunglasses as the sun popped in and out of the clouds like a hyper mole was just heaven. Just me and the lake and some ducks. I don't know how I could ever not live in the east end. And if it weren't for Ashbridges Bay, I doubt I'd have stayed in Toronto this long.
  

The new normal

My mother bought me a subscription to Zoomer magazine, which I'm not overly impressed with (but thanks, Mom). I do read Libby Znaimer from time to time, though, now that we have a cancer connection. Her October column was one I could relate to: she dealt with how different the first experience of cancer is from subsequent occurrences. Going from being told "You're cured" to being happy with "No evidence of metastatic disease" is a leap only those who've experienced it can understand, I suppose. She describes opting not to ring the bell at Princess Margaret Hospital that's used to celebrate finishing a course of chemotherapy. Living with cancer, rather than beating cancer, becomes the new normal. "In my new life," she writes, "as a survivor [a word she admits makes her uncomfortable], there will be no bells, banners or noisy declarations of victory. Every ordinary day is a milestone." Gotta agree with that.

I am experiencing a lot of pain that spreads from my ribs into my abdomen, which I could live with more easily if I understood what causes it. Fingers crossed: I'm hoping to sit down with my oncologist AND a radiologist to review my scans. If my oncologist's secretary, whom I adore, figures out how to set it up.

Pollyanna moments:

• I had my eyebrows threaded last Friday -- what a thrill to again possess eyebrows bushy enough to warrant threading! God, it hurts, though it's over quickly. I wish I could watch somebody else getting it done, because I've yet to figure out how it works. The women who do this work simply grab a length of thread, do something weird with it on your sensitive eye area, you scream a little and then it's done.
• I'm actually kind of liking my Judy Dench–style ’do. But even at half an inch long, it's got a powerful wave in it -- although I'm tempted to keep it short-short, it would be interesting to grow it out and see if it's even curlier than it was before. A lot of people say their hair grew back different after chemotherapy.
  
• I'm cranky because the weather has turned humid and cloudy, but, boy did I love the first three weeks of September -- cool, sunny, just my style.
• I have lost enough weight to wear my rings again.

It's all relative

More cancer "relativity." I saw my medical oncologist today. First she spent quite a bit of time giving me the results of the CT scan of my body. The good news -- very good news -- is that there is no cancer showing up in any of my vital organs. But the CT report was more doubtful about my bones: previous hot spots that had looked like cancer-caused holes now seem to be filled in, which may mean the chemo or the Zometa has helped, but also means it was cancer.

Then I reminded Dr. Lee that I also had a bone scan a couple of weeks ago, which she had missed; it didn't seem to show anything scary at all! On the other hand, one of the blood markers for cancer suggests there is/was cancer in the bones. On the third hand, the same people who read these films and reported on them did reports on my films from several months ago and completely missed that I had a collapsed vertebra. Which seemed so clear to me when I looked at the films myself, an eight-year-old could have picked it out. Sheesh.

The funny thing is that the doctor who did my bone scan said he would refer to the CT scan to help him judge the bone scan!

In any case, Dr. Lee is very positive about my situation, but she tends to be a Pollyanna and is reluctant to quote any survival statistics or tell me that I will or won't need my pension (and she suggests keeping the porta-cath in "for now"). I think she's worried about creating self-fulfilling prophecies and depression. Her optimism, combined with her propensity for thinking out loud, makes me come away as confused as ever. I have Stage 4 cancer; she agrees it's metastatic. My own Googling shows that only 20 percent of breast cancer patients with bone mets survive more than five years, and I have a couple of factors that could put me in the shorter-lived group (a blood marker called CEA and the fact that I'm mostly estrogen-receptor negative). But there are so many other factors involved that I can't really blame the doctor for being so equivocal. I've forgotten half of what Dr. Lee said; fortunately, she is one of the few doctors I've met who lets me tape our consultations, so I'm going to go over the recording again and see if anything becomes clearer.

So...relative to a year ago, I have an incurable terminal illness and that's still upsetting. Relative to what could have shown up on the scans today, I have every reason to be relieved.

Dr. Lee agreed I should be trying a little harder to lose some weight; her enthusiasm for this plan of action seemed bolstered by the fact that she's been fasting for Ramadan, which, she admitted, was also making her head a little fuzzy! She gave a brief pitch for fasting as my stomach growled. It may be too late when it comes to diet change; my high-carb, high-fat diet over the years probably contributed to my cancer in the first place. And there's a difference between diet leading to a primary cancer and diet affecting a recurrence of cancer. The research on individual types of food is pretty vague, but it seems clear that high calorie intake is associated with cancer, so...can I take this fact seriously long enough to go a day without chocolate? I wouldn't put any serious money on it.

In any case, Dr. Lee wants to take another look at the pathology of my tumours to see if I have enough estrogen-receptor positivity to warrant taking Tamoxifen or some other hormonal therapy again (the two biopsies I've had ranged from 9 percent to 30 percent ER-positive). I'm to continue the monthly Zometa injection to strengthen my bones. When my orthopod does an MRI of my spine, I'll get him to send a copy to Dr. Lee -- maybe it will clarify something. I read in the paper that the Ontario government is going to start paying for PET scans this fall, so maybe I can get one of those. And I'm considering taking all my files and getting another opinion from another medical oncologist (don't know who) or even another radiologist.

When I left the hospital (my friend Liz kindly accompanied me), I did feel relieved because it seemed as though not much had changed; I didn't feel like there was any new, scary thing to adjust to. But when I got home, I realized I hadn't truly adjusted to the old scary thing. During treatment, you really feel like you're putting everything on hold, including fear, predictions, plans. Tonight I feel as though I'm looking this thing in the face for the first time, with a clear head. From today, I am simply living with cancer, a terminal chronic disease. As for dying, a social worker at Princess Margaret who has also had cancer told me, "I'll worry about dying on the last day."

My last bout of cancer was all about denying the situation and changing absolutely nothing about my life, because I liked it just the way it was. That was my gift to myself. Now that my life is in greater jeopardy, and probably because I'm in my 50s and kinda worn out, for the first time I feel like it's time to make serious changes in my life, or at least in my priorities. Not sure what, or how, but life is now going to be about (a) staying alive, (b) enjoying myself, and (c) limiting myself to work I like and that allows me to address the things that matter to me (volunteering, for one).

Meanwhile, I'm taking a break from my anti-inflammatory pills and for the first time in a while my ribs are aching. None of this makes any sense....

Waiting...

I'm in a weird place right now. The treatments are over, but my shoulder blade and ribs started acting up again a couple of days ago, making it hard to sleep. I think my sleep is also disturbed because of other stressors, not the least of which is my upcoming visit to the medical oncologist on Thursday to get my scan results. I'm more nervous than I realized. I'm pretty sure that rather than get really bad news or really good news, I'll just get more inconclusive news. We'll see.

In the meantime, I have decided to use the next while to work on the psychological, social and emotional aspects of having cancer by taking advantage of some of the many workshops and resources that are available to me free of charge as a cancer patient. I've been trying out the first level of the popular "Healing Journey" series, started up by Alastair Cunningham at Princess Margaret Hospital. It's intended to foster "an active response to the crisis of cancer," and deals with relaxation, living in the moment and all that Eckart Tolle stuff. Some of it seems a little airy-fairy, but it's good to get together with others in the same boat, and there is a small study showing that people who've followed the program have lived longer than expected.

I've also signed up for a 10-week program at Mount Sinai Hospital called "Taking Charge," which is about diet and exercise for post-treatment breast cancer patients.

Another perk that's available to me is referral to psychotherapists for three free sessions, which I'd like to try. And there are any number of other workshops and counselling opportunities through the Breast Cancer Survivorship Program at Princess Margaret as well as Wellspring, the network of cancer support centres. For example, I've signed up with the latter for a couple of sessions on returning to work after treatment.

Of course, as someone once said to me, cancer support entails support but it also entails more cancer -- more opportunities to be immersed in a subject you'd like to simply forget. But I think I'm at the stage now where I'm so thoroughly immersed that I just have to learn to swim.

Walking for Terry, June and me

Yesterday the Terry Fox Walk /Run took place, and I participated down in the Beaches, along Ashbridge's Bay. I accompanied my neighbour Daryl and his family and some friends and neighbours to honour his wife, June, who died of lung cancer last year, and had walked in every Terry Fox walk but one since its inception. And to honour me, several members of my family came along: Mom, brothers, sisters-in-law and my niece and three nephews.

The night before, my shoulder blade started acting up again, for the first time in six weeks or so, and I slept only about two hours after taking codeine. So I was pretty dopey for the walk, but I managed the 5K I'd planned on, and raised more than $1,700. Here's me at the finish line:


Pollyanna moments:

• We had a nice lunch at my place after the walk and my family brought me a chocolate cake.
• My littlest nephew found a dollar in the sand and put it in a donation box.
• The weather's been lovely.