Feeling blue

Just finished my second chemo injection. I felt shitty going in, maybe because I couldn't sleep last night. There was some question as to whether chemo should go ahead; I had obviously picked up a virus, with the sore throat and fever last week and the ulcer in my mouth. My oncologist was prepared to delay chemo for a week -- she's worried the mouth sore will get worse -- but I really didn't want to get off schedule. And when my blood tests came back, my white and red blood cell counts were all great. So we went ahead. On Dr. Lee's instructions, I sucked on an orange popsicle while I was being infused, apparently to keep the drugs away from that area by temporarily freezing it.

But I seem to have rib pain again, and the blood indicator for bone metastasis (alkaline phosphatase), which had been slightly elevated, is now way up. Why would the chemo make the rib pain go away for a week or so and then stop working? The doc hopes it's an anomaly. Meanwhile, my shoulder blade is still keeping me low. I found the day depressing, but I need to take a cue from a young woman who was also getting chemo, who looked perfectly well but has Stage 4 breast cancer, metastasized throughout her body, and is on permanent chemo of the sort I had five years ago. She was preternaturally cheery and seemed to have accepted her fate as something that simply ran in her family. She truly did appear to be living in the moment.

On the other hand, I could take my cue from philosopher Alain de Botton (see article in Maclean's April 6 issue, p. 43), who believes it's important to accept that life is, indeed, an utter vale of tears, but thinks we should take comfort from the fact that we're all in it together.

Pollyanna moments:

• As usual, good friends made me laugh at the beginning and end of my long chemo day. Though when I'm feeling sad like this, I kind of want to be left alone, it is good to be dragged out of my funk from time to time.
  
• When I got home, I found one of my brothers had left a card and some daffodils at my doorstep (and there was a photo of some daffs in my email inbox from Neil).
• On Saturday, I got to see two of my not-so-little-anymore nephews play hockey. I nearly fainted at one point (and nearly did a face plant out of my wheelchair) -- I guess codeine on top of the virus and lack of sleep was a little too much. But it was fun to be with my family and to see those little guys whose diapers I changed grab the puck in a breakaway. In the words of Jane Siberry in "Hockey," "He'll have that scar on his chin forever / Some day his girlfriend will say...hey...where... / And he might look out the window...or not."
  

Oral hygiene

The past couple of days have been a bit miserable, despite the welcome presence of dear friends visiting from Alberta. I was warned that I might get mouth sores from the chemotherapy and that I should practice excellent oral hygiene and rinse my mouth four times a day with baking soda and water, which I did for the first few days after my first chemo injection. But I got confident the sores wouldn't arrive, and slacked off. (Standing at the sink to brush my teeth can be quite painful, although my recent purchase of an electric toothbrush has helped some.) Sure enough, I sprouted a big split-lip type of lesion right around the same time my hair began to shed, more than two weeks after the injection. I've got some prescription stuff to gargle with now, but the sores make it difficult to eat, drink and talk. At about the same time, I got a wicked sore throat that kept me up for a couple of nights, and last night I developed fever and chills. I am supposed to head for the Emergency department if my temperature exceeds 38 degrees C; last night it was 37.9, so I just stayed in bed (returning to the Emergency room is not top of my list of things to do, especially at night). Now it seems to have gone back to normal and my throat is feeling quite a bit better. I have hopes that the mouth sores will subside with treatment--but my shoulder blade is killing me. Boo-hoo.

On Wednesday, I went to see Dr. McCharm, the surgeon who removed my lymph nodes. I'm really discouraged about the fact that, since the surgery almost two months ago, I have been unable to walk much, and my underarm is still numb and hard and painful. "I told you it'll be like that for the rest of your life," said the doc with his usual grin. What I remember him saying before the surgery was "It will never feel the same." Naively, I took that to mean that it would get better but there would be some permanent minor residual pain in my arm. I shudder to think it will always feel this way, like somebody sewed my underarm to my shoulder blade from the inside. He conceded that the havoc he wreaked on the ligaments and nerves in my underarm could well have affected the musculature in my back, which is why I have so much trouble walking. Not great news.

Meanwhile, I told him that the person I went to for lymphatic drainage massage had been unwilling to massage my actual incisions for fear of stirring up cancer cells. He said there was no reason to worry about that, because he had removed the tissue with clear margins, and he was in favour of massaging the incisions. I wish I'd done it sooner--it feels like there's serious adhesion going on there.

Pollyanna moments:

• Playing Lexulous online with Matt in real time, sitting side by side, each with our own laptops, in my living room.
• Hugging Ken because he's not too tall.
• Finishing a great book: Down to This: Squalor and Splendour in a Big-City Shantytown by Shaughnessy Bishop-Stall, a worm's-eye view of the rise and fall of Toronto's Tent City.

The bald and the beautiful

Right on schedule, my hair began to fall out today, two weeks after my first chemo injection. I gave it a tug just for fun and a small hunk pulled out; then I washed it and combed it wet, and a fair amount came out on the comb. I couldn't see having to pick up long strands everywhere in the house and down the drains. So I went to a local hair salon and had it shaved off, down to about a half-inch, as you can see in the photo along the right. My friend Matt pushed me in the wheelchair, and the hairstylist, who's probably around my age or older, thought Matt was my son. Matt is five months my senior. Sigh. I think constant pain does a number on your face! And Matt is pretty well preserved.

I had hair almost this short in the '80s (my nickname was Cynth Vicious), but I could pull it off when I still had my youthful cheekbones. I now look a lot like my dad in his 1960s brush-cut phase. Maybe I should get a fedora... The problem is that I look terrible in headgear of any kind. I have purchased two chemo scarves, one a dark brown sort of turban and the other a lovely red silk number. But neither is particularly flattering. I'm not sure now that I want to spend money on a wig -- my insurance covers only $100, and I think they're pretty costly.

Please, please, let me hold on to my eyebrows. I will trade my pubic hair for those any day!

Old-lady bones

There's a television ad running these days that features a group of middle-aged women in a restaurant celebrating the 50th birthday of one of them. The birthday girl scoffs at the idea that she should take a calcium supplement, thinking she's too young to get osteoporosis. I've always had good bones according to the bone-density tests I've had, so like the woman in the ad (and many ads like it), I haven't worried much about osteoporosis. Now that I have a vertebral fracture whose cause is vague and might be multifactorial (including the possibility that the anti-cancer drug I took for two years caused my bones to dissolve), I've been Googling "compression fracture." And the consequences of bone-thinning are a lot scarier than I'd ever realized. In an earlier post I showed a link to an X-ray that resembles my collapsed vertebra.


The drawing here, taken from a website my friend Hugh sent me, shows more explicitly what's happening. If you're a middle-aged woman especially (but it can happen to men, too), take a good look! It's quite painful (I believe mine has collapsed to a much greater extent than this one). Fractures like these can be the result of trauma or cancer but are most commonly caused by osteoporosis. I looked for other sites on compression fractures, and the most interesting finding (as in this one) was more confirmation that one symptom of the kyphosis (dowager's hump) accompanied by these fractures is a protruding abdomen: basically, one's organs become cramped by the downward pressure, which can lead to serious breathing problems, gastrointestinal complaints and weight loss because you always feel full. This has definitely been happening to me, exacerbated by the fact that my abdominal organs are already cramped because my spinal fusion was performed when I was so young: I've lost weight but still have a bulging upper abdomen, my stomach is often upset, and my breathing is often shallow. I'm hungry when I lie down, but as soon as I stand up, I feel full.

The good news is that with rest and time, these fractures are supposed to heal in a matter of weeks or months. But my pain has got steadily worse in the year and a half since it began. The website above says that even after the fractures heal, the compensatory things your back muscles do can continue to cause pain. Clearly other factors are involved, though I'm happy to report that in the past couple of days I've been able to walk greater distances than I have in the two months since my lumpectomy. I still feel fatigued, though, and every time I stand up my head spins and throbs.

Pollyanna moments:

• My best friend is visiting for almost a week, and we're laughing a lot.
• The sun has been shining like crazy.
• Yesterday I walked nearly half an hour, mostly pushing my wheelchair, on the way to the grocery store and back, and though it's not a beautiful walk, I felt like a human being for the first time in many weeks. You never imagine how much you'd miss doing something simple like going for groceries under your own steam.
  
• My next-door neighbour offered to take all the dead stuff off my front and back yards today, which will make things look even springier.

Hard and harder

I look at this slogan somewhat ruefully each time I see it (it's for the Weekend to End Breast Cancer). Right now walking is even harder for me than breast cancer.

State of the body

It's been 10 days since my first chemo injection, and I'm pleased that the nausea has pretty much gone away. I haven't had to take the as-needed anti-nausea pill (Stemetil) for a couple of days. My appetite is good, but the gastrointestinal distress that I had prior to the chemo is still there and probably worse -- when I lie down, I'm starving, but when I stand up I feel full and burpy, and I continue to have painful attacks of what I assume is heartburn (should have taken the hospital pharmacist's advice to use Prevacid every night). The nasty sweet taste in my mouth that put me off certain foods has faded. The really bad constipation seems to result from one particular anti-nausea drug (Zofran) that I take only for the first three days after the injection, so I'll know what to expect next time. Of course, I knew that five years ago, but it's amazing how much I've forgotten since then. Anyway, I'm sure my friends are not keen to read about my bowels, but if someone is reading this to gain practical information about cancer treatment, they might find this helpful. For the next cycle, I plan to take Stemetil every four hours for the first three days to nip the vomiting in the bud, and I'll be laying on more laxatives. If you are going through the same thing as I am, don't be a hero -- take the drugs.

I have developed neutropenia, which means my white blood-cell count is low and I'm prone to infection (the doctor says I should be more frightened by the bugs inside my own body than the ones on the people around me, but I still have a PLEASE WASH HANDS sign in my front porch). We have opted not to give me the thousand-dollar injection of Neupogen in hopes that I'll be OK without it -- I guess the numbers weren't too bad.

So far my hair is still on my head. I've developed some impressive zits on my face. The Porta-cath still hurts. No mouth sores so far. I'm sleeping much better than I was a week ago. I still have dizziness and a feeling of being car-sick -- that sensation that the air you're breathing is suddenly very cold and your head is woozy -- but that's decreased.

As for my back, the pain continues to shift and change, as it has for the past year with the slow and gradual collapse of that vertebra. I still have no pain at night. It's been amazing to me how much worse it got after the armpit surgery. If anything, my armpit feels worse than it did the first week after surgery; I still feel as though I have a large bulldog clip there. Between the tightness of the incision there, the spine pain between my breasts and the Porta-Cath on the right side of my chest, I feel like my torso is encased in concrete. But this week I seem to be able to lie on an incline again, which makes typing possible. If I have an active morning (meaning, put in a load of laundry, do some stretches, take a shower, wash my hair), by noon I'm in agony and have to take codeine. But if I skip the shower/bath and lie around a lot, I can manage without the painkillers, and can even walk for 10 minutes or so. I've been going out with the wheelchair, pushing it for a distance and then sitting in it for a while.

Interestingly, I believe my rib pain has diminished considerably. I don't know if the chemo can work that quickly, but my guess is that I do have bone metastasis, and the spinal kyphosis is just an unlucky coincidence.

Meanwhile, Dr. Second has disappointed me, as has his secretary. Since consulting with him on February 23, I have now called his office four times, once speaking to the secretary, three times leaving a message, to ask for the name of the back brace that the doctor alluded to in our interview but failed to write down for me. In my last message, four days ago, I stressed that I am in terrible pain and now require a wheelchair, but I have heard not a peep. Waiting a long time to see him is one thing -- I know he's incredibly in demand. But what would it take for him to tell the secretary the name of that brace and for her to call me back? Meanwhile, I have been in touch with a friend of a relative who had revision surgery after her spinal fusion with Harrington rods fell apart (this Wikipedia entry fairly accurately reflects my experience of that procedure, which she had in 1974 and I had in 1966 -- my spine looks a little like the X-ray below), and it turns out that her surgeon was the one I was thinking of getting a third opinion from, whom I'll call Dr. Third. In fact, as it turns out, I learned about Dr. Third because this woman posted about him on a Yahoo group devoted to post-scoliosis-surgery problems. She liked him a lot and was happy with her surgery. I think I'll try for a referral after all.

Salt of the earth

I've been trying to figure out a way to describe last Sunday night without sounding like a total snob. On Sunday afternoon, Diane and her son took me out for my first spin with the wheelchair. It was both horrifying and exhilarating: horrifying to think I'd come to need a wheelchair, and exhilarating to lumber along the sidewalk in the spring sunshine, and feel the breeze on my body, and get gouged at the Big Carrot. It felt very freeing. Most people in stores were kind and addressed me to my face. And, most important, the chair (with an Obus lumbar-support attachment placed upside down to prop up my shoulder blades) seems to be comfortable to sit in and doesn't make my back feel worse. Still, perhaps because of the chemo, or perhaps because I'm lying around too much, I felt seasick both in the car and in the chair.

And then pains began shooting from my Porta-Cath site down my arm. I went home and phoned the home-care nurse, who said I shouldn't be able to feel the Porta-Cath at all, but since the morning I had become very conscious of the tube in my neck vein and I'd noticed it hurt a bit when I rolled over in bed. The incision was a little redder, too. The nurse suggested I head to Emergency. So Diane and I gritted our teeth and she drove me to the hospital.

We were there for the expected five hours. And the scene in the waiting room was like something from a bad sitcom. Somehow we got seated next to four pathologically friendly, talkative people. They were lovely and kind, but I found my urban reflexes completely at war with my small-town background. The more they said I had lovely skin and their dad had survived cancer and where was I from and what was my name, the crosser I became. There was a very well-preserved and clearly lonely 80-year-old woman with a walker who was hemorrhaging; to call her gregarious would be an understatement. Then in walked a man my age who was visiting from a smaller city with his 13-year-old son, who had twisted his ankle. Finally a man in his early 70s who said he'd been an entertainer (and he did look awfully familiar) joined our little gang.

The man with the son was a clone of my late and lamented uncle, who would talk to anyone and wanted to be their best friend within five minutes of shaking their hand vigorously, slapping them on the back and asking all manner of semi-personal questions. (It didn't help that when he initially saw me from behind, he asked Diane if I was her son, but when I turned around he decided Diane must be my daughter, though she's only seven years younger than I.) When he got wind that I was a writer, he became obsequious to boot, which I hate. I felt a little like Steve Martin bunking in with John Candy in Planes, Trains and Automobiles, though the guy was well-intentioned and good humoured, and appeared to be a devoted and affectionate father. After he'd shaken my hand numerous times, and sat practically on top of me, I went to the washroom and scrubbed my hands, only to find he'd sent his little boy to hold my hand and help me walk back to my seat. I'd never felt so conflicted in my life. It was such a sweet gesture, but I'M NOT SUPPOSED TO BE EXPOSED TO GERMS!

The entertainer began trading bad jokes and riddles with the 13-year-old, and then told us a long and sad tale of taking his wife from pillar to post with various medical complaints, only to be rejected, lied to, repeatedly misdiagnosed and hospitalized for months, whereupon she finally died. He seemed to have been a gentle and attentive husband and nurse (had served as a medic in the services), and I felt for him. But his story was soooooo depressing; by the time he was through, I had visions of myself meeting a similar fate, but without the loving husband to nurse me.

It bothered me that the poor 80-year-old woman was all alone in Emerg without one of her children, but one of the main reasons I had trouble dealing with her life story was that her voice was so soft and the Coke machine made so much noise, I couldn't hear her. I just nodded and smiled grimly as I watched her lips move. That's as much a mark of my own hearing loss as anything, I suppose; I've always had trouble hearing people speak in noisy rooms.

Diane was relaxed and friendly in the face of this onslaught of human connectedness, and normally, although I'm more reticent with strangers than she (I learned to be after I left Massey; or maybe that's why I left Massey), I would have been friendlier. I detest snobs, and I hate being thought of as one. I've always felt that when I moved to Toronto, I learned to act more Torontonian than the Torontonians, but deep down I felt my friendly, small-town demeanour was still intact. Maybe I'm wrong.

But I was not at my best. I was terrified that my catheter was about to explode in a staph infection, which would go straight through the tubing to my heart and kill me, and my low-grade nausea made me just want to sit still and be quiet. Plus after three hours it was hard to find a comfortable sitting position. Most of all, my habitual cheeriness in the face of what I've come to think of as my calamity tends to dissipate when I'm in the Emergency room. I become overwhelmed by the idea that I'm going to spend the rest of my life in a hospital, that I'm going to pick up germs and end up like my cousin (who is recovering, thank God), that my life has been reduced to one big medical crisis. It's funny, I don't feel that bad when I'm anywhere else in the hospital; just in Emerg.

Finally, I asked Diane to get me out of there, and she urged the attendants to find me a room to lie down in. I had naively thought that if a 51-year-old woman walked in with chest pain shooting into her arm, she would be attended to quickly, but I was wrong. I would also have thought that a 13-year-old boy with a sprained ankle would not be made to sit for four hours with no attention; I would have thought they'd have given him a bag of ice and told him to elevate his foot and then made him wait for four hours. Instead he was limping around on it. They probably had to cut his running shoe off in the end.

Another two hours in an examination room and a chest X-ray resulted in a diagnosis of nothing. The doctors and nurse were great, and said it's likely that some people feel some discomfort with a foreign body in their chest. Makes sense. I went home and did what I should have done when I was deciding whether to get the Porta-Cath or the PICC line: instead of Googling Porta-Cath vs. PICC line, I Googled "Porta-Cath hurts." Sure enough, I came up with blogs and discussion forums in which several people claimed their Porta-Caths were uncomfortable. The pains are quite infrequent now, though it still feels yucky.

I feel ashamed that I was angry at my sick companions in Emerg, but I really wasn't feeling well, and I had a meltdown once I was alone with Diane. At 10 p.m. we got out of the hospital, went across the street to Fran's and had a terrible meal with terrible service. But the Pollyanna moment was that it was the first time in many weeks that I'd been able to just go out to a restaurant with a friend, and that felt nice and normal. Since then I've been to another restaurant with my wheelchair, and it helped a lot.

Bif Naked's fingernails

Interesting article in The Globe and Mail about Vancouver singer/actor Bif Naked and her experience with breast cancer. Her perspective on her treatment side effects made me glad that I'm scheduled for only three rounds of Docataxel, but heaven knows I may need more at some point. I had heard that one's fingernails could dissolve (toenails, too?), but when that side effect didn't show up on the handout they gave me at the hospital, I relaxed. I suppose it's not likely to happen after only three cycles. Still, my skin is turning a funny orange colour, and today my face looks puffy and droopy on one side, and diarrhea has begun. I'm having some difficulty with my right hand; slept funny on it, maybe.

I woke up at 3 a.m. again and felt incredibly energetic and centred and not at all lonely or frightened in the dark of my house. I got up, watched an inspiring 20-minute video of Elizabeth Gilbert (author of Eat, Pray, Love) speaking about creativity at the TED conference; I lit some candles, did some exercises and stretches, and was suffused with a sense of peace and an ability to be in the moment that has entirely escaped me during the busy daytimes. I then slept from 6 to 8 a.m. and awoke feeling nauseated and crappy, and my back pain was so bad I am now sacked out on the couch in a codeine-induced stupor. I remember the 3 a.m. insomnia from my chemo five years ago, but not these ups and downs, and I'm certainly sicker than I was then.

But it's sunny out again, and I am determined to get out this afternoon, to test-drive my wheelchair!

Re: Bif Naked -- I know nothing of her music, but I saw her once in a charming 2001 Canadian film that was probably seen by me and three other people called Lunch with Charles. I liked her.

Gut reaction

Between my back and my digestive tract (you don't want to know), I've been a tad miserable, but Tylenol 3s have helped my mood, and, unlike a couple of weeks ago, seem to have the effect of allowing me to at least sit up if not stand up. Yesterday I got pretty desperate staring at the ceiling -- not being able to use my computer, watch TV or even see the faces of people talking to me is disheartening -- but a jolt of codeine seems to be enough to allow me to prop myself on a pillow without too much discomfort. Makes a huge difference.

Big step yesterday: bought a wheelchair and a shower chair. I haven't tried either yet. My other move toward the differently abled world was to acquire an "accessible parking permit." My mother had shown me where to find an application online (she just got one because of my dad's dementia), and I was surprised, for some reason, to learn that the pass doesn't have to belong to a car; it can be allotted to a person. With this, my friends can transport me and park for nothing on the street, or use disabled spots. I felt a little guilty and silly bringing in the form for the doctor's signature on the day I had chemo, and I held back, thinking I really didn't deserve it. And then my favourite chemo nurse walked in with blank forms and offered me one. I was a little shocked that the Driver's Licence office didn't even ask me for ID, or offer me a list of the parking rules (the nurse gave me that, too). So now I can be one of those people who pisses off drivers in other cars.

Pollyanna moments:

• My longtime plumber (a retired guy of 69 who never hesitates to help out whenever I call) came over yesterday and fixed three leaks, and then, because he's a devout Christian, anointed my head with oil, prayed for me and commanded the cancer to leave my body. All of that for 145 bucks! I haven't the faintest religious faith, but I'm drawn to church and to ceremony, perhaps because I was brought up in the church, as they say. And he was so sweet and cheery about it that I did feel a wee bit uplifted afterward.
• A friend and neighbour presented me with the fourth lot of pink tulips I've received in two weeks, each batch arriving just as the last one was biting the dust. Accompanying her were her two gorgeous Husky dogs to give me hugs and lick my face. We sat in the strong afternoon sunshine beating down on my front step and watched the dogs make their sunshine faces. It still throws me off balance when I look out my front door and don't see eight feet of snow in the front garden.
• I played around with my blog and figured out how to add some photos (in anticipation of posting a photo revealing my incipient bald head, just a few to remind people of what I used to look like) and other gadgets, including a link in the title bar to Bob Dylan and the Band's song The Clothesline Saga, after which I named the blog. Not sure why I picked the name, but the song never fails to crack me up with its deadpan quotidian-ness (is that a word?), in its lyrics, its melody and its delivery. When I was a teenager, my pals and I used to get high and listen to The Basement Tapes just to laugh our idiotic teenage heads off at The Clothesline Saga, Apple Suckling Tree, Please Mrs. Henry, etc. I don't think you have to be high (or a teenager) to find them funny. Anyway, if you click on the link in the title bar, you can hear the song on YouTube.
  

!@#$% Death

Yesterday was my first chemo day. Got a late start; as last time, my doctor failed to put the orders through and seemed surprised to see me there. They have new reclining chairs with heated seats, but I was still uncomfortable. I'm really only comfortable lying down on a soft surface, like my own bed. I wasn't as nervous as before--obviously it's old hat now--but I really enjoyed the company of several friends who dropped me off, picked me up and stopped by during the day (as well as a visit from an aunt and uncle who were in town to see their son, who was in intensive care in the same hospital with blood-poisoning brought on by a staph infection he acquired during surgery). I'm used to sitting among hairless, be-tuqued folks, some of whom look miserable and sleep all day attached to their IV poles, others of whom are chipper and chatty. The best part is that the same nurses work there who were there five years ago, and they're wonderful and, as important I suppose, familiar to me. It feels kind of like home. Except that one of the really friendly administrative staff I loved five years ago has since died of ovarian cancer.

The day before, I was in surgery all day having the Porta-Cath inserted. It's like a tiny Staples EASY button underneath my skin just above my right breast. To inject drugs or take blood, they still stick your skin with a needle, but they don't have to mess around looking for a vein; they simply poke through the skin on top of the crown of the button, which is plastic and about the size of a dime, and they're in. The button is attached to a tube that runs through what I think is my jugular vein to the vicinity of my heart.

So...45 minutes ago I had my first vomiting session despite all the anti-nausea medication. It was preceded by an hour or two of mild nausea and chills, which, combined with my back pain, made me fairly miserable, but I have to say that the whole episode was not nearly as bad as Norwalk virus, which I've had two or three times. And now I feel quite a bit better. The question is, how often will it occur?

A friend nervously handed me a gift the other day, worried that she had not accurately assessed my sense of humour, but I got a great laugh out of it: a black mug with stark white letters reading "FUCK DEATH." Apparently a young artist she knows has a website called fuckdeath.org, with the ambitious plan of eliminating the Grim Reaper from the universe, a plan I think could only come from young folks. The more realistic plan may be to sell a bit of merchandise. But I appreciate the sentiment. Even so, I struggle with this notion of not going gently into that good night. I admire people who arrive at a place of acceptance when death draws nigh, and I hope I can have that kind of equanimity.

I've always hated that stupid word battle in connection with cancer ("Died after a long battle with, etc."). Not only is it a cliché, but it seemed to me that in the end humans are foolish to think they have much choice in the circumstances -- cancer either gets you or it doesn't. I've been known to say I didn't want that word battle used in my obit. However, now that I've got advanced cancer that nevertheless may not kill me imminently, it does feel like a battle. I just don't want to be battling right up to the last minute, is all.

I think that coffee mug has a flexible message, actually, since the word fuck has so many meanings. And I expect to be dancing many different dances with death before I'm through. (That metaphor is not mine: I picked it up from a book called How to Ride a Dragon: Women with Breast Cancer Tell Their Stories by Michele Tocher.)

Pollyanna moment: Last weekend some friends invited me overnight to their place in Burlington -- chauffeured me there and back and waited on me hand and foot. Their two dogs, a standard poodle and a German shepherd, are mature and well-behaved and lovely to be around. The shepherd in particular is dear to me simply because I love shepherds and the last dog relationship in my life was with my brother's shepherd, the late Ruby. My friends' dog lavishes much attention on me, and I assume it's because he can tell I'm drawn to him. Later I wondered if it had anything to do with the reports that dogs can detect cancer...

Better Living Through Chemicals

Met with my oncologist this week (accompanied by another wonderful, patient friend), but first spoke to her very bright resident, who presented me with a problem: although I had pretty much decided not to have a biopsy of my spine and to go ahead with chemo, she recommended having one done because the presence or absence of bone metastasis would determine what kind of chemo regimen would be called for. In her view, it was better not to use the most powerful chemo agents if there were no bone mets, in order to save them for my arsenal further down the road. Her compromise was to leave the spine alone so as not to screw it up for the later surgery, but to order a biopsy of my ribs.

Then my oncologist came in and said that I should have my spine repaired first, which sounded crazy. Isn't it more important to kill the cancer first, I replied -- it could be months before I'd even get spine surgery booked!

OK, she said, then we'll do the chemo first. I pointed out that her associate recommended doing a biopsy to determine which kind of chemo to pick. But Dr. Lee (I'll call her that because I once called her that in an article I wrote) disagreed; she felt "in her gut" that we should be throwing the toughest possible chemo at me now rather than later. Maybe she feels this in her gut because she didn't throw the tough chemo at me five years ago. In any event, I guess I am going with Dr. Lee's gut instead of a bone biopsy. I have to admit that I think I have cancer in my ribs. I don't know why I think that, but there you go.

I did protest that the clashing opinions were confusing me, but the resident deferred to Dr. Lee, of course. So the upshot of our typically circular conversation is that I'm going to do the tough chemo starting next Tuesday. The combo is called FEC-D, which includes three injections of three drugs (FEC) followed by three injections of one (D):

F = Fluorouracil
E = Epirubicin
C = Cyclophosphamide
D = Docetaxel

I took the F and the C last time, but the other two are new to me, with possibly stronger side effects. I think there is also a certain increased level of deadliness when these drugs are combined.

My patient navigator sent me a pdf of a very good handout from the B.C. Cancer Agency on how this regimen works and what the side effects are.

The injections will be three weeks apart for a total of six mornings in the hospital over four months. After that I may have radiation to my armpit every day for five weeks (something Dr. Lee frowned on last time I saw her but now seems to think is a good idea -- we'll see what the radiation oncologist says tomorrow).

As for my back pain, it has shifted again; the shoulder-blade pressure seems to have decreased (maybe my armpit is starting to loosen up) and the spine pain is worse, along with the pressure on my stomach and the indigestion and heartburn. I feel as though someone has impaled me through the sternum. I've had this gastro stuff on and off since September and it's really bad today; makes it hard to eat. It actually feels much like the gastro symptoms I had during chemo five years ago. So I'm a little worried about going into chemo next week feeling like I'm already on chemo...

Pollyanna moment: Last night a bunch of former coworkers came over; we hadn't all been together in a long time, and it was a riot. The younger men brought me a gorgeous big bunch of pink tulips. We ordered Pakistani food from the place down the street and laughed our heads off, and I was able to sit at the table fairly comfortably.

The Tale of Dr. Mean

Having a yucky morning. After feeling some relief from the pain and pressure on the weekend, I've had a couple of bad days, with not just pain and pressure but stomach upset.

Since I'm cranky, I will dedicate today's post to a story I promised to tell, which some friends have heard, about the worst experience I've had with a doctor in pursuit of some answers about this new back pain -- probably the worst experience I've ever had with a health-care practitioner, ever. It says a lot, I believe, about the Canadian health system (which, on balance, I approve of, but certainly has its flaws), and, in particular, the problems around orthopedic care.

After a spinal fusion with metal rods for scoliosis when I was eight years old (that's a whole other story), I've seen many orthopedic surgeons regarding sciatic pain and later lower-back pain that has plagued me on and off since my 20s (I should say that until this year I have missed maybe a day and a half of work because of back pain; I just lived with it). The reason I've seen so many orthopedists is that, one by one, each of them packed up and moved to the U.S. shortly after I began seeing them, including the one who did my original surgery.

In my late 30s, I went to a lovely old guy who was close to retirement and had operated on my brother. He knew a lot, and he suggested I should see him every six months (I didn't see any reason to go so often) in case my arthritis and stenosis worsened, though he said he didn't see any paralysis in my future. One day I might need a fusion of some of the remaining vertebra, he said, but that was to be avoided and in the meantime he strongly recommended I see a physiotherapist he worked with closely, who worked in the hospital's outpatient physio clinic.

The physiotherapist was brilliant -- I learned more from her about scoliosis and, more important, the aftermath of its surgical treatment, than I ever had from any surgeon. She never performed any therapy, just taught me exercises, recommended lifestyle accommodations and explained what my body was doing. Seeing her from time to time kept me out of the orthopedist's office, but eventually the clinic was privatized and for reasons that seemed complex and unfair, she was pushed out of the hospital. I c0ntinued to see her after she set up a private practice, even though her services were no longer covered by OHIP.

Meanwhile, my comfy old orthopedist retired. When I asked him whom I could see in his place, he recommended two younger doctors at his hospital. I went to one (the one I called Dr. Second in an earlier post) but found him a bit arrogant and unhelpful; when I asked him about exercise, with an air of impatience he had his secretary dig out an old repeatedly mimeographed sheet containing scratchy old diagrams, and kind of threw it in my direction, and he made me feel like an idiot for being sucked in by a podiatrist who sold me orthotics, which he considers an insurance scam. When Dr. Comfy came out of retirement part-time for a short while, I saw him again and he suggested I try the second guy, whom I'll call Dr. Mean.

Dr. Mean wasn't mean at all the first couple of times I saw him. He was polite and attentive, and his attitude toward surgery was conservative; he predicted a lot of pain because of the lower-back stenosis, and said I might develop "drop foot," but recommended nerve-root cortisone injections (which I never tried) and keeping good muscle tone. He also suggested the part of my lower spine that wasn't fused might fuse on its own and the pain might go away as a result. The last time I saw him, in January 2007, he said I should come back in a year.

Exactly a year later, my lower-back and sciatic pain vanished, almost overnight, but at around the same time I began feeling odd twinges in my upper back between my shoulder blades, which occasionally shot down into my armpits and arms. By spring of 2008, it was worsening and because it was something I'd never experienced before -- and because I'd had breast cancer -- I was a little concerned, although it wasn't debilitating. My wonderful physiotherapist had gone missing, so I couldn't ask her anything. I asked my GP if he knew of any physiotherapist that specialized in spines, and he gave me a blank look, then suggested I call the Canadian Back Institute (which I didn't do because my brother was given bad advice by them). My GP didn't seem worried and said repeatedly that he was not surprised my spine would throw me some discomfort here and there. I suggested maybe I should go back and see Dr. Mean, and my GP agreed that was a good idea and ordered an X-ray to take to him.

So I called Dr. Mean's office myself and made an appointment. Nowadays some specialists won't take appointments without a referral from a family doctor if it's been a year since you last saw them, or maybe two years. But some don't seem to care. In any case, Dr. Mean's secretary didn't object in any way although it had been a little over a year since I'd seen him, and she slotted me in for the end of May.

When I showed up, Dr. Mean opened my file and asked why I had referred myself without going through my GP. I was a bit stunned and nervous and didn't remind him that the last time I'd seen him, he'd told me to come back in a year. "Trying to be your own doctor, are you?" he said, without a smile. Then he asked me what was wrong. When I told him I had upper-back pain and that my lower-back stuff had gone away, he said, "A lot of people have back pain. I can't see every person who has back pain. My time is valuable."

I was more stunned, and stuttered something about thinking it was a good idea to check in with my orthopedist when my back pain changed dramatically. He shuffled through my files. "You were referred to me for lower-back pain," he snapped. "If you're coming to me for a new problem, you need to be referred by your GP. He should know that."

"I'm sorry," I said. Trying to keep it light, I chuckled a bit and said, "You gotta imagine that sounds kind of crazy to me since I only have one spine." This was, apparently, the wrong thing to say. He got really angry then, in my opinion wasting a lot of time telling me how much of his time I was wasting while I kept trying to get him to look at my X-rays. "I thought you were my orthopedist," I said, "and that I could come to you for ongoing problems with my back."

"It doesn't work that way!" he said over and over. I stammered out my theory that I was developing a hunchback in the unfused upper part of my spine and that that must be creating a lot of stress at the junction of the fusion; I suggested I needed to know what kind of changes I could expect as I aged (because nobody had ever been very specific about that). He agreed that I might have some changes, but continued to be dismissive. I began to cry and reminded him that I had had breast cancer and I was worried about bone metastasis. He finally took a look at my X-ray and then pooh-poohed its usefulness while at the same time saying my back looked fine. He turned me around and examined me perfunctorily.

I asked him whether he wanted to do a new X-ray while I was there. No, he didn't. I asked him whether he worked closely with a physiotherapist who was knowledgeable about scoliosis surgery. Again, I got the "It doesn't work that way!" response. "If you need a physiotherapist," he barked, "look in the phone book."

I was so distressed at this point that I said something like, "Look, I'm not stupid, but I obviously don't understand how it does work. Could you explain it to me? Are you not my orthopedist?"

"I'm not stupid, either!" he replied. Then he softened a little and said, "OK, I know you've had cancer and so you're concerned." But somehow the exchange deteriorated from there, and ended with him saying, "Get yourself another doctor," and stomping out the door.

I had never felt so unsafe and helpless in my life, not to mention humiliated and alone. How was I ever going to get to the bottom of this problem if I didn't have an orthopedic surgeon who provided me with ongoing care? It takes a year to get a first appointment with a spine doctor, of which there aren't many in Canada; their phone greetings say so, usually along with the warning that Dr. So-and-So sees only "surgical patients," which I assume means they don't do ongoing care, they only do surgery. But how do they know whether you need surgery if they don't give you some ongoing care? In the meantime, it took me a day or two to realize that what Dr. Mean had been trying to say to me without actually saying it was that he wouldn't be able to bill for that appointment because I had not been properly referred. How was I to know the system works that way? Why didn't my GP? Was Dr. Mean simply having a bad day, or was he taking out on me his frustration with the stupid, fragmented way our medical system works?

I admit that I am an argumentative person, and I often discuss my case vigorously with doctors, but I seldom get a hostile or unkind reaction, and I've never encountered anything like the Dr. Mean debacle.

Meanwhile, in June my oncologist ordered a bone scan and bone-density test just to be sure there wasn't cancer in my spine; when I called for the results I was told everything was fine (even though the bone-density technologist told me that I'd lost over an inch in height). I found a new physiotherapist through a friend. In December my back pain had become so intense I went to the emergency department, where, to my shock, the doctors dug out the July bone scan, told me it showed anomalies in my upper spine and urged me to see my oncologist. That's when she found the lump in my armpit. At my request back in June, she had referred me to another orthopedic surgeon, and it was another eight months before I got to see him, and then only because the new CT scan she ordered at my urging in January showed bone metastasis and a collapsed vertebra.

I only learned recently that there's a new-ish spine centre in Mississauga with an integrated-care system, where you can get in quickly to see a surgeon, who works closely with other types of health-care providers. So that's where I'm going to try for a third opinion.

A friend who recently vacationed in New Orleans visited on the weekend and brought me a voodoo doll. I've hated very few people in my life, and I've been wondering who or what my voodoo doll should represent. Any suggestions?