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.

Astral zapping

My friend Neil was recently dreading minor surgery to remove a cyst, and, after asking friends to send him good vibes (he called it "astral zapping"), he was told the cyst had shrunk enough to make surgery unnecessary. I suggested I could use some astral zapping, so he sent me this doctored version of a photo he took while I was having radiation treatment:



I had a wonderful Labour Day weekend; my friend Hugh drove me up to Massey, my hometown. The weather was marvellous and we stayed at the B&B of my cousin Cameron McGregor and his partner Tanya Rouleau, called River House (I highly recommend it). It's just outside of town on the Spanish River, which was a real treat for me. I can no longer visit the river where my parents used to live, but not only is River House on an equally beautiful part of the Spanish, but Cameron's parents and grandparents live across the road, so I felt as though I was almost home. It was a bittersweet visit, hard to be there without my mom and dad. I was reminded of how, when I lived there, Massey seemed like a boring small town, but now all I see is how lovely it is, set at the convergence of two rivers. Here's a morning shot:



For the past months, while I went through treatment, I have managed to be pretty upbeat. Even when I felt like crap, the fact that treatment was ongoing allowed me to put fear of dying on hold. This week, the predicted post-treatment funk has set in, and I'm feeling a bit low. Thank goodness for the nice weather.

The small burn on my chest is coming to a head, kind of crunchy and a little infected. I hope it will clear up soon.

I'm done! A bit over-done, even...

I completed my final radiation treatment today -- hurray! I'd intended to make a little ceremony out of tossing my hospital robe, the one that's been saved for me every day in a bag with my name on it at my request, but the housekeeping staff had already put it in the laundry yesterday. I left the hospital and stood on the steps a moment, not sure whether I wanted to jump up and down or have a little cry. So I took myself to the Elephant & Castle and had lunch, including a decadent brownie dessert they make, and told the waiter, who has served me numerous times, that I'd just finished seven months of cancer treatment and was giving myself a treat. (Don't know what excuse I'll use next time I indulge myself there...) He very kindly didn't charge me for the dessert and sent me off with best wishes.

My skin burns will get a little worse before they get better, but the saline compresses seem to be working well. I'll have to make them and use them for the next couple of weeks -- just boiled saltwater and a facecloth.

What's the next step? I'll have a CT scan of my whole trunk on Friday and a bone scan next Tuesday. I get the results on the 17th. Worst-case scenario: the cancer has spread to my liver or lungs. Confusing scenario: I still have spots in my ribs and they still don't know what they are, OR there are no spots on my ribs and maybe they were cancer and were banished by the chemo and radiation. Or not.

Soon I should be having an MRI of the parts of my spine they can see and a visit with Dr. Second.

Today my radiation oncologist agreed with a metaphor that I came up with: if I don't have bone metastasis (but will we ever know?), then what I have is a "regional recurrence" -- regional meaning not in the primary site but in the lymph nodes near it. So, the horse has left the barn, but it's standing quite near the door. It could lie down and go to sleep for a time; it could lie down and die (not likely); or it could go galloping away (which means I'm toast). Until I've had my tests, she'll make no comment on whether I should sell my house, retire, return to work, start spending my savings, plan for the future.

I feel frustrated and don't know how to proceed. In eight months I've gone from being told I had metastatic breast cancer to being told I might not, or at least not really; I've gone from stumbling around for months in shrieking pain with an undiagnosed broken back to walking with some ease. I'm learning to live with permanent numbness and nerve damage to my arm and breast.

We'll see what the scans tell me.

Pollyanna moments:

• I've signed up to to walk in the Terry Fox Walk/Run in the Beaches on Sunday, September 13. I hope I can manage 5K. Right at the moment walking hurts the least; standing around the house or cooking or washing dishes makes my shoulder burn, and working at a desk makes it REALLY burn. If you'd like to donate to my efforts, here's the link.
• I made myself an omelette this morning using half a dozen organic cherry tomatoes I grew in a container -- first time I've grown tomatoes! They were tasty.
  

Hair lip

Several years ago, when my brother's boys were little, I was reading them a story as they sat at my feet. One of them stared cherubically up at my face, rapt by the tale -- or so I thought, until he wrinkled his nose and asked, "How come you've got fur on your lip?"

Well, the fur is returning, along with all my other body hair, slowly but surely. I've even had to dig out and dust off the tweezers. It's not all returning evenly, but rather in long, patchy strands. So far, I've got eyebrows where I don't like them but not where I do like them -- I'm still using the eyebrow liner. To my horror, I now have "fur" on my lower lip, in addition to the upper. Meanwhile, the hair on my head seems to be coming in much greyer than it was before. It's still very short, but at least it's covering my scalp.

I have two more radiation treatments to go and then I'm DONE. My skin has reacted much better than it did five years ago, but I'm still doing the saline compresses several times a day; I think they're helping keep the itch and burn to a dull roar. Today I had the technicians show me the complex diagram that illustrates what parts of me are being radiated, and I was surprised to find that they are doing my upper back -- the machine circles around and shoots me from under the table somehow. I panicked for a second because my orthopedic doctor said he wouldn't be able to fuse my spine if it were radiated, but the technician assured me that the beams are avoiding my spine. How that's possible, I don't understand. But now I know why my back feels so itchy.

I've been quite active recently, and walking is pretty easy, though the burning in my upper back is sometimes a bit much. And from time to time, I feel like I'm overdoing it and need to lie down for a while. I'm sleeping quite a lot.

Here's a photo of what I looked like getting radiated five years ago:



Pollyanna moments:

• Wonderful to see some friends from abroad: Joan from Australia and Neil from Vancouver and Manila.
• Took my 12-year-old nephew to the Art Gallery of Ontario; I hadn't been there since the renovation. I was heartbroken at what they've done to Walker Court -- a mishmash of styles -- but liked the wooden gallery overlooking Dundas Street. My nephew loved the chairs.
  
• Enjoyed the Taste of South Asia festival last weekend, which was handily less than a block away from my house, of course. Sugarcane juice looks like murky green swamp water but it's very tasty.
  
• Went to see District 9 -- great movie.

Green light

Re: yesterday's post. I finally found out that the green beams of light in the radiation room are laser beams intended for positioning. The beam runs up my body and the technicians line it up with the tattoos on my chest -- like drawing a line with a ruler.

Because I hate the idea of wearing a hospital gown for 10 or 15 minutes every day and then tossing it in the hospital laundry, halfway through my treatments one of the technicians said he could put one in a bag with my name on it so that I could reuse it each day. And I chose one that kinda fits. But one of the other technicians wouldn't believe me when I asked for it -- wouldn't even look for it. I persisted and found it the next day.

This is what "interesting" has come to mean in my day! Preserving hospital wash water.

But after my treatment I walked over to the weekly farmer's market outside the Hospital for Sick Children and bought some Ontario raspberries. And took a pile of magazines to Toronto General -- I've exhausted all the waiting-room coffee tables at Princess Margaret. I'm starting to see some shelf space in my house.

My upper back is burning, burning, burning.

Absolutely radiant

For those of you who've never had the pleasure, I'll describe what it's like to have radiation treatment. A typical course for breast cancer is 25 treatments, every weekday for five weeks (statutory holidays excluded). Sometime before the treatments begin, you have a planning session including a CT scan during which they position you on a table and take a bunch of measurements so that they can aim their radiotherapy beams at the right spots. Each treatment has to exactly duplicate the position in the plan.

When I had radiation five years ago, the positioning bit was time-consuming and even painful because my back problems got in the way; they wanted to radiate my breast without catching my armpit, but I'm so inflexible it was hard to do. Not only do they not want to radiate tissue that doesn't need it, but they don't want to preclude the opportunity to radiate it sometime in the future if it becomes necessary. I believe that's because they aren't supposed to radiate the same spot twice in one lifetime. This time around, it's going much more smoothly; when I mentioned this to my radiation oncologist and attributed it to the fact that this time they're radiating my armpit and not my breast, she said no, it was because they are better at it than they were five years ago. She told me with some excitement that my plan had been presented to a board or a committee or something, presumably as an example of something tricky.

They're not just radiating my armpit; they're also doing something called the supraclavicular area, which is between my breast and my neck, as well as a spot on my back. There are lymph nodes there that can develop cancer, which would not be good.

The setup at Princess Margaret Hospital is pretty smooth. I received a little card with a UPC label unique to me, and when I arrive in the department, I stick the card under a scanner until it beeps, which lets the technicians know I'm there -- I never have to speak to a receptionist. A computer screen tells me if my treatment unit is on time or running behind. The modern-looking reception area is equipped with comfy chairs (though they're arranged like an obstacle course), jigsaw puzzles in progress on coffee tables, as well as bins full of partly knitted scarves that knitters can pick up and continue. But the wait is never very long; I'm usually called in within five minutes, by a young technician proffering a robe that's large enough to fit three of me.

After I change, I enter the large radiation room when the "Beam Off" sign is lit up. A huge photo of a tropical beach hangs backlit on the wall. My plan states that I don't use the neck support, so they remove it from the table before I lie down, positioning my tailbone on a ridge in the table, almost the only uncomfortable part of the procedure. Every single day they ask me for my date of birth.

There's a CD player in the room, with a pile of CDs; most often they play some horrendous Muzak-y piano renditions of tunes such as "Babe" by Styx or Whitney Houston's "I Will Always Love You." Once in a while I complain and ask for something better and they put on a Motown CD, but I think some of the technicians prefer instrumental stuff so they can concentrate on what they're doing without distracting lyrics.

Two young and friendly technicians spend about five minutes getting me in the right position, measured down to the millimetre, literally. I remove my left arm from my robe and raise it so that it lies in an arm support and my breast is exposed. During my first appointment, I was tattooed with minuscule black dots on my chest -- so minuscule I had assumed the ones I got five years ago were gone, but apparently they could still see them. They make some more spots on my skin with a Magic Marker. One technician reads out measurements in centimetres and millimetres and the other adjusts me, the table, and other doodads. "Eighty-nine point five," says one; "I agree," says the other. In the dim room, narrow beams of green light crisscross my body -- I don't know what they are. But there's a sign on the wall that warns against looking at the sources of the beams, so I mostly keep my eyes shut. So that the radiation doesn't hit my chin, I have to keep it tilted up, which is the other mildly uncomfortable part.

When they're assured I'm in the right position, the technicians cover me up with my robe or a piece of paper, and say brightly, "Here we go." They leave the room to go to their posts at the computers that direct the beams, where they can see me on a monitor. There's a big round machine above me, and it starts to make whirring noises, moving around me in a circle. A high-pitched whine sounds when the radiation pierces my body, but I feel nothing at all. It takes about five minutes, and then the technicians re-enter the room and help me off the table. That's it. It's about as simple as a normal X-ray, though it's really a kind of particle accelerator, with much, much more power than an X-ray.

There's an easy-to-follow explanation of all this at a U.K. website called Cancerbackup, which I find amusing because in one spot, where they explain that certain types of cancer require the insertion of an internal probe, they use the term "back passage" presumably to mean "anus." Yikes. Anyway, luckily none of my passages, back or front, are being invaded.

Yesterday I was hit with serious fatigue, but it might just be the heat. My skin is starting to get a little rough and sore, but it's not too bad so far. I have 10 treatments left.

Pollyanna moments:

• It's like an oven outside, but I've been able to keep my non-air-conditioned house relatively cool by keeping all the doors and windows shut and judiciously using fans.
• I had a birthday cake at my brother Paul's last weekend.
• I was able to spend a long while with my dad on Saturday, and we bopped around his room to Oliver Schroer's fiddle and a bunch of tunes by the Mamas and the Papas.

Old is the new old

When I was about 17, I worked in a drugstore as a clerk. One day a little girl bought a chocolate bar or something, and her mother said to her, "Pay the lady." I looked around, wondering who she was talking about, and then realized the lady was me. It was a shock to be referred to with a distinctly adult term (disregarding the connotations of the word "lady" for a young feminist, which was a whole other story). A few years later, when I was about 20, a friend my age told me that an older friend of his had referred to me as "an interesting woman," and the putative compliment went unnoticed as I contemplated the fact that I was now a "woman" and not a girl. I think I squirmed a little, but also felt a tad proud, if a bit of an impostor. I may have been all grown up, but I didn't feel it.

Miraculously, I seem to have made it to the age of 52, but in the past few months strangers have taken me to be the mother of three different friends of mine, two of them older than I. And last weekend, someone assumed I was my mother's sister (not a rare occurrence, actually). The next day, I was walking in a park holding my father's hand when a small child on a small bicycle veered toward us, out of control. "Watch out for the old people!" shouted his dad.

I always knew that my mature appearance as a teenager, then an advantage, would eventually turn into a nuisance. In fact, I remember a nurse assuming I was my sister's mother when I wasn't more than 30 and she 25.

But I know that illness has aged me a great deal in the past year. (Please, no reassuring comments: I'm not fishing, just musing about the fascinating, if disheartening or at least bewildering, changes we all go through). And it's not just sagging eyelids and the usual wrinkles, and the middle-aged weight gain (I've actually lost 10 pounds since last year); my missing eyebrows contribute to the senior-citizen look. (At least the whiskers on my chin have disappeared for the time being.) Worse, I think, is the dowager's hump. Which leaves me with the question: should I have the spinal surgery if the pain is not debilitating? Will I be doing it mostly for cosmetic reasons? I have always had a superstitious conviction that any surgery I have in order to look better will lead to some catastrophe.

In the meantime, I have felt better in the past week than I have in a long time. The effects of the chemo have finally left my body (with the exception that my fingernails are looking weirder and weirder), and the effects of the radiation have yet to begin. I'm not out of breath, and my back feels much better again, and I'm able to get around the city independently in a way that makes me rejoice -- haven't taken any codeine in over a week. And the weather continues to be cool and relatively dry.

Pollyanna moments:

• I got to meet oncologist, comedian, writer and famous atheist Dr. Robert Buckman, who leads a cancer support group discussion on Thursday afternoons at Princess Margaret Hospital -- he's a funny and funny-looking man with a real gift for supportive honesty. Though I did feel a chill as I stepped off the elevator to attend the group and realized I was in the palliative care unit where my dear friend Adele stayed for a while toward the end of her life. Surely I was not headed in this direction anytime soon, I thought; I feel so well! But I'm doing a good job of not looking toward the future anymore. It's like a blank to me.
• I attended the final presentation of the weeklong children's circus camp at the Centre of Gravity circus training studio around the corner from my house. It was a hoot to see little kids on the trapeze, etc., including a certain young Natalie.
• Stratford was a wonderful break, especially the Shakespeare Gardens, a picnic with friends and my mom on the Avon River, Colm Feore's wonderful Cyrano, and the muscular dancing in West Side Story. Also had a great picnic with my mom and dad in Waterloo Park in Waterloo, a lovely place I hadn't visited before.
• Yesterday I got a huge laugh watching a squirrel running up a tree with a whole slice of pizza in his mouth.

Just now my neighbours and I all just stuck our heads out our front doors, mystified by the tremendous crash we just heard -- it sounded like someone's house had collapsed. But it was thunder, louder than any of us had ever heard, all the louder because it was preceded by not a single preliminary rumble.

Nuke that armpit

Just finished radiation treatment number 4 (of 25). It’s going much more smoothly than I remember it going five years ago. I’m in and out in 15 minutes; so far no waiting. Last time I recall a lot of difficulty positioning me on the table, perhaps because they were doing a different part of my body, my breast. Because of my stiff spine, I believe the technicians had trouble aiming the radiation beam at my breast from the side without catching my underarm. As it was, they did manage to fry a little of the surface of my armpit (hence the current lack of hair follicles and sweat glands there). Considering that now the problem is in my underarm, maybe it would have been just as well if they had fried it. Anyway, maybe doing the armpit is easier, because so far the treatments are as simple as ordering a cup of tea. It is a little uncomfortable having to hold still in one position with my head tilted up, but it’s not for more than about 7 minutes. Meanwhile, I visualize a beam of pink energy zapping cancer cells and shredding them to atoms. A lot of good that did me five years ago, but I guess it beats lying there and thinking about the garbage strike or Iran or my dad’s health.

The people who give me the treatments are very cheerful young men and women, with the emphasis on young. They look like they just had their high school proms last week. I know I’m being bombarded with green laser-like beams that make the whole room look like Star Trek – I know because last time around a friend came into the treatment room with me and convinced me that the setup was bizarre-looking enough to warrant taking photos. Eager to do anything that would make us laugh, I agreed, and I have a whole roll of pictures taken with a LOMO camera of my half-naked body crisscrossed with green lines. Later one of my brothers took some photos, too; I apologized in case he felt embarrassed seeing my surgery-ravaged body. “I’ve seen worse scars on some strippers,” he said encouragingly.

I have promised myself that I will not pay a visit to a hospital without a load of magazines to place in waiting rooms, with a view to ridding my house of the stacks and stacks of them I’ve hung on to for years. Twenty-five trips to Princess Margaret should make a small dent.

Off to Kitchener to see my dad in his new home and then go to Stratford with Mom to see Cyrano de Bergerac and West Side Story. The shoulder blade pain has now spread to my breast, which aches terribly. Perhaps it’s wishful thinking, but I think I’m a little less out of breath this week, though I have dizzy spells whenever I lie down.

Alberta holiday

Nearing the end of my Alberta vacation, I am finally catching up with the blog. There have been many Pollyanna moments; the weather is scorching, but it's pretty dry, so I can manage. It always amazes me that I can put a sopping wet T-shirt on the clothesline in Red Deer and see it dry in an hour, quite unlike in muggy Toronto.

In Edmonton, I stayed with Helen and Mitch, and the highlight, as always, was our lame attempt at singing old Dylan songs and other 60s classics with Mitch on guitar. We probably sounded like three drunken cats, but it was great fun. And while I was there I purchased and finished reading The Book of Negroes by Lawrence Hill. We also went shopping on Whyte Ave.; though I'm not a big shopper anymore, I've found that months of being mostly cooped up in the house has left me aching to browse and put down a few dollars.

Next I took a bus to Calgary and went to stay with Joan and Paul and their now-grownup kids in the foothills near Bragg Creek. They live in such a relaxing and beautiful spot amid huge conifers and a short walk (which we took several times) from the shallow, rushing Elbow River and its stony shores. While there I celebrated my 52nd birthday; it was a clear, hot day, and Joan and Paul drove me up to Banff, where I had lunch with Moira at the Banff Centre while they hiked. Then, as my birthday gift, we had a short canoe ride on the Bow River, me sitting in the middle like the Queen of the Nile (if the Queen of the Nile wore a fluorescent orange life preserver and a Tilley hat). The contrast between the hot sun and the glacial water was true Alberta. Afterward we had dinner in Canmore, at a restaurant I would recommend, the Rocky Mountain Flatbread Company.

Now I'm in Red Deer with Matt and Keith, where I indulged my shopping bug some more by buying, get this, a Tilley Endurables blouse, and a new Derek Alexander handbag (I am so not a labels person, but I am trying to fit in with the modern ethos -- I am of the generation of working-class girls who would never have thought to mention "who" I'm wearing because it was the "what" and the "where did you get it" that mattered, and I admit I sometimes laugh at my young friends who are so focused on designer names). Last night we waded in Sylvan Lake and ate Big Moo ice cream, and I've had some nice walks near the Red Deer River.

This weekend the children's theatre group of which Matt is artistic director, Treehouse Youth Theatre, has several performances as part of Red Deer's CentreFest street performers festival, so he's busy with that, and I'll head down there today or tomorrow. Other than that I've been playing Boggle and Scrabble and exercising my thoracic duct (laughing) by reading David Sedaris books. And I had a brief visit with an aunt of mine who is languishing, but physically healthy, in a long-term-care facility here in Red Deer -- she has frontal-lobe dementia, can't speak and knows no one. I think she's 71. But when I sang to her -- "Heart of My Heart" and "You Are My Sunshine" -- her eyes got big, she looked me straight in the eye, and she laughed heartily. It was a difficult visit, because I had just got news that my father, her older brother, who has a different form of dementia, is going into long-term care on Monday. He's only 74.

As for my health: the day before I left for Alberta I started having tremendous shoulder blade pain, which I think was stirred up by the lymphatic drainage massage, and I've been living on Tylenol 3s since I got here, sleeping poorly and unable to sit for long periods. Pretty miserable on that score. But I haven't had to take a T3 for the past 24 hours, and the discomfort is settling down to a dull roar, thank goodness. Meanwhile, I can walk pretty well on a flat surface, but the least little hill has me huffing and puffing like a steam train. Is it just being wildly out of shape, or has my heart been damaged by the chemo?

At least I can now taste my food.