Top end-oscopy

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

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

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

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

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

Well, I had wanted to lose some weight.

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

Pain trek

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

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

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

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

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

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

NIghtmare on my street

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

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

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

Pollyanna moments:

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

Pain, my friend

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dr. Cynthia

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

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

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

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

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

Pollyanna moments:

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

Report from the wee sma's

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

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

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

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

Pollyanna moments:
Hmmm...

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

We interrupt this whine...

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

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

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

Ups and downs

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

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

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

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

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

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

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

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