Shout-out

I received a surprise gift recently from my friend and former Ryerson student (and fellow former Massey-ite), the freelance writer (and now Ryerson teacher) Bruce Gillespie -- two books by Cynthia Kaplan, which Bruce assures me will make me laugh. I have received so many gifts and kindnesses from friends old and new, colleagues and acquaintances, neighbours and relatives, and there's so little I can give in return. So the least I can do is mention a recently published book that Bruce co-edited with western Canadian creative non-fiction writer and teacher Lynne Van Luven.

It's called Nobody's Father: Life Without Kids, and it's described as a collection of personal essays by men who don't have children, whether by choice or by circumstance. It features a foreword by playwright and author Tomson Highway. I haven't read it yet, but it's on order. Kudos to Bruce and Lynne!

My own writing about being single has evoked some interesting and occasionally hostile responses. All the more reason I'm pleased to see more writing by those who've ended up not taking the "normal" route. (Nobody's Father is a sequel to Nobody's Mother: Life Without Kids, also edited by Van Luven [2006]. I have days when I would kill to have some grown children, though I'm reasonably certain that if I had been a mom, my offspring would probably have stopped speaking to me by now. I do know that, with cancer, I am grateful that I don't have small kids. Leaving little ones behind must be the worst.)

You would think I'd have time to read both of those books now that I am not working, but my to-read pile has hardly dropped a millimetre. For my book club, I am now working on Freedom's Daughters: The Unsung Heroines of the Civil Rights Movement from 1830 to 1970 by Lynne Olson. My next project: putting together the documents for my income taxes, which, since I freelanced last year, will be a bit of a slog.

Today I walked the length of my street without too much pain. Does this mean the effects of the arm surgery, which made my back so much worse, may fade? I'm trying to exercise daily and do anything I can do around the house in two-minute chunks. The one thing that's been consistent about my back pain is its inconsistency -- it has changed from week to week.

I had an e-mail from a friend who described someone she knew who has pancreatic cancer along with four collapsed vertebrae that he was told were bone cancer. It turned out that he had severe osteoporosis caused by the local GP treating a rash with high long-term doses of prednisone. Sounds familiar.

Orthopedic Surgeon II

I have always had a horror of sitting in a wheelchair -- not an uncommon fear, I suppose. When I was in my late 20s and my sciatic pain was unbearable, my sister once suggested I use a wheelchair to visit the Royal Ontario Museum, and I refused. To be in a wheelchair felt like giving up, entering a new, frightening world, donning a new identity (or non-identity, as many people who use wheelchairs will tell you).

But my two visits to the hospital this week forced me into wheelchairs. I can walk without too much pain for up to a couple of minutes, and then as soon as gravity begins to do its work, I feel like my ribcage is sliding painfully toward my hips. I have to hold my breath to hold it all up, so I start hyperventilating. I began to wonder whether I should acquire my own wheelchair so that I can get around better, but I don't want to rely on it; I want to keep trying to use my body before it wastes away. Besides, the wheelchairs in the hospital are sloped back a bit, which helps me sit somewhat comfortably -- can you get wheelchairs that don't have straight backs without paying a fortune? I am now unable to sit up straight while eating, so I lean back, dropping food all over my bosom.

I spent all day Monday waiting, with a patient, entertaining and very sharp friend, to see the second orthopedic surgeon, whom I'll call Dr. Second. I had seen him years before, and from reading online newsgroups devoted to the problems of those of us who had surgery for scoliosis when the methods were more primitive, I knew he was one of the handful of surgeons in Canada with lots of experience doing what's called revision spine surgery. He's a bit cocky, not particularly warm, but seems to provide straight answers. He agreed that I have a broken vertebra just at the point where my fusion ends, and I was again able to see it very clearly on the CT scan (why the radiologist's report on that scan didn't mention it boggles my mind). Here's a picture that resembles what's happened to my vertebra (minus all the hardware). As I thought, I have junctional kyphosis, which simply means I've developed a hunchback at the spot where my spinal fusion ends. Dr. Second seemed to think surgery would take away my pain; it would involve fusing a couple more vertebrae, and possibly removing the broken one (a procedure called pedicle subtraction osteotomy) and cutting away some of the steel rod. It all sounds very dangerous, yet I know from a family member who also sees him that this doctor is not one to push surgeries he doesn't think are promising. I told Dr. Second that Dr. 12, the orthopedic surgeon whom I saw last week, had made the surgery sound too difficult to make it worthwhile. Without commenting on Dr. 12's expertise, Dr. Second said casually that this is a very common problem, and that he does 20 of these repairs every year. "We're lucky at this hospital," he added. "His hospital doesn't have the budget to do them."

Dr. Second's comments were markedly different from those of Dr. 12, and I'm inclined to trust him; I'd never heard of Dr. 12 before, and he looked so young. Unlike Dr. 12, Dr. Second doesn't think the fracture is the result of cancer in my spine (though, like everyone else, he has no comment on the radiologist's claim that I have cancer in my ribs); like Dr. 12, he does not recommend that my spine be radiated without first having a spinal biopsy to determine whether there's a malignancy. But unlike Dr. 12, he doesn't favour doing the biopsy now. First of all, Dr. 12 made it sound as though the biopsy and the vertebroplasty (cementing the fractures) are separate things; but Dr. Second claims that because the biopsy involves removing bone, they'd have to put cement in regardless. Plus, he thinks cementing the fractures won't necessarily help the pain and it might make later surgery more difficult. He says the kyphoplasty option (propping up the vertebra with a balloon) is a bit of a gimmick. Second, he says that radiating my spine will kill the bone and make later surgery impossible! He wouldn't be able to do a proper fusion or put screws in the bone.

This was a shock. If I do as he suggests, I'll start with chemo for four months; when I've recovered, I'll need major back surgery, which will include a spinal biopsy; if it turns out it's cancer, when I've recovered from the back surgery, then I could have radiation. Which means the bone metastasis treatment would happen many months from now. Should I wait that long? Should I have my armpit radiated before back surgery? (The radiation oncologist had wanted to radiate the armpit, the ribs and the spine all at once.) Does the chemo help kill bone metastases, or is that usually the job of radiation? Should I be treating the back problem first, because it's wrecking my quality of life, or the cancer, which will kill me (seems like a no-brainer, except when you look at the possibility that the two are connected)?

Many more questions. Even as I learn more with each consultation and each Google search, I am aware that my knowledge is still sadly limited, and my opinions may be entirely wrong-headed. I'll be seeing my medical oncologist on March 3 and the radiation oncologist on March 6. Since I have to get the chemo out of the way anyway, there's still time to see a Dr. Third -- there are a couple other spinal surgeons in town who are known for doing these sorts of revisions. Can't hurt.

Pollyanna moments?

• Again, the friend who accompanied me to see the surgeon was a godsend. He kept me engaged and relaxed through a very long day of waiting, and helped me summarize what had been said after the doctor had left the room.
• Yesterday I had a scan of my heart to see whether I can withstand the tough chemo drugs. Another friend accompanied me and later helped me go to the bank and to a restaurant to eat pancakes for Pancake Tuesday. And she took me home and chopped up all the vegetables in my kitchen.
• One of my aunts sent me a shawl that had been my grandmother's. It's now gracing my couch and matches rather well the afghan beside it that was knitted for me by my other grandmother. So I feel like I'm surrounded by the love of those two women, not to mention that of my aunt.
• My brother and his wife took my mom and me to see Jersey Boys on the weekend. Although I didn't think the production was up to snuff (we saw the matinee substitute for Frankie Valli rather than the regular actor, and he's a bit of a stick), and walking to the car was tough, the theatre seat was comfortable (with cushions I brought), and I enjoyed the music. The next day I downloaded some Frankie Valli tunes and played them for my mom, and I actually spent a couple of minutes dancing around the living room. I felt pretty good that day, and managed to do some exercises. Now that I'm feeling worse, I'm not sure if I'm suffering from having done too much exercise, or from not doing enough over the past two busy days....
  

Learning

I'm truly bored with this being-sick nonsense, which must mean I'm feeling slightly better; my cold has finally bit the dust, and today my back pain dialled itself down to awful from excruciating. I was actually able to do a few things around the house, and without benefit of Tylenol 3s. After two days in which a two- or three-block walk had me in tears, it was a relief. My incisions still make me feel as though I have two large bulldog clamps gripping my armpit, all covered with duct tape, while someone is scoring my outer arm with a nail file.

This thumb-twiddling stage between treatments is odd. It's getting harder and harder to believe that I have a terminal disease, since the terminus is not clearly in view. But in the past few days I've begun learning a bit more about advanced breast cancer. I forced myself to read one of the books a friend was kind enough to order for me, a short, gentle primer written in a fairly unthreatening way, up to and including the usual "end-of-life preparations" chapter (it's called 100 Questions & Answers About Advanced and Metastatic Breast Cancer by Lillie D. Shockney and Gary R. Shapiro). It raised lots of questions (aside from: are advanced and metastatic breast cancer different things, as the title implies?).

Also:

• The book says if you take an aromatase inhibitor like Arimidex, as I did, your bone health should be carefully monitored and you should take bisphosphonates. Why didn't I?
• I learned that if your breast cancer started out being sensitive to estrogen and progesterone (which means it can be treated with long-term hormonal treatment), it can come back without that sensitivity (which mine apparently has). Still, my doctor continues to point out that mine is just slightly sensitive to estrogen; yet she has agreed that I should stop taking my anti-estrogen drug...
• The book mentions that if you have radiation to your chest (not sure yet if I will), to protect your lungs and heart from radiation there is something called an Active Breath Control Device to use during radiotherapy -- presumably it permits the machine to track your chest movements and target the radiation accordingly?
• One risk of getting a central venous catheter for injections is a collapsed lung.
• If the chemo and/or other treatment succeeds in putting me into remission, the quicker I respond to treatment, the longer I'll be in remission. And eventually the treatment will stop working.
• However, it says, "Breast cancer that has metastasized to the bone or soft tissues generally grows more slowly, and responds to treatment more completely and longer, than breast cancer that involves the lung, liver, or brain." That's a relief.
• Still, I will probably be getting chemotherapy for the rest of my life. My oncologist has never said that. Is she just being nice?
  
• There is no reason for me to have a mastectomy, or to have any more mammograms, or even colonoscopies, for the remainder of my life. I guess there's no point in locking the barn door after the horse is gone.

I also learned a few things from my visit to the physiotherapist who specializes in lymphatic care. She massaged my arm vigorously, though she didn't want to touch my incisions in case she might stir up rogue cancer cells. She told me two or three things about breast cancer that were complete surprises to me, all of which have completely fled my memory just now. Sheesh.

Haven't listed any Pollyanna moments in a while:

• Watching the Oscars; Penelope Cruz must be the most beautiful woman on the planet. And Beyoncé Knowles is refreshingly curvy compared with a lot of female performers in skimpy clothing. (BTW, Hugh Jackman is not half-bad as a host.)
• This morning, my mom and I lay in bed in our jammies and talked about old times for a long while.

Tomorrow: Orthopedic surgeon number 2.

Orthopedic Surgeon I

First, you notice that cops look like they're 12 years old; then the emergency-room physician looks like he's 12 years old; now I'm at the age where even specialists look 12 (of course, I've also passed the milestone that I'm older than the prime minister). The orthopedic surgeon I saw this week was very nice and very young-looking. He spent plenty of time with me, and I think he read the four pages of notes I provided. (Yes, I'm obsessive, but I'm also a fan of the concept of narrative medicine, pioneered by Rita Charon, which holds that doctors and patients are also just human beings with stories to tell, and that the better we are at telling, eliciting and listening to stories, the better our diagnoses will be and the quicker we'll arrive at them. I'm a writer, so I sometimes write down my story for the doctors, though I'm aware that the "story" he or she will pick up is not limited to the content of my written notes, or my oral medical history; they probably pick up that I'm a controlling, detail-strangled fuss-budget! Anyway, there's a great long piece in The New York Times about narrative medicine here.)

So, Dr. 12 can't say for sure whether the compression fracture is caused by cancer or something else, but he recommends a spinal biopsy (which my oncologist had seemed to dismiss as too painful -- gaahhh!). However, he has to consult with a radiologist to get an opinion on whether they can even get into my metal-encased spine to do a biopsy. The bad news is that surgery to fix my back, in his view, would be a major, day-long, dangerous and painful procedure without a great chance of decreasing my pain. My spine might be too soft to hold screws, etc. The good news is that, no matter what is causing the fracture, if the radiologist thinks the area is accessible, he could go in at the same time as the biopsy (I think) under local anesthetic and insert cement into the cracks (vertebroplasty), and maybe even use a balloon to restore the height of the vertebra, a technique called kyphoplasty (which, when I look at this link, seems not to be recommended for people with scoliosis like me, so go figure).

These procedures are meant to take away pain, are supposedly "minimally invasive," but of course have a small chance of causing infection, paralysis, lung embolisms, yadda-yadda.

(Questions that dog me: Why did my oncologist not more closely monitor my bones after I started taking an anti-cancer drug known to cause osteoporosis? Why was I not given extra bone-strengthening drugs? But the reports I've read suggest that Arimidex may cause bone thinning only in people who already have thin bones to start with, and in 2003 I was told I had the hips of a 20-year-old. That would seem to indicate that the compression fracture is, indeed, caused by cancer. Still, while last summer's bone-density test said my hips were fine, too, Dr. 12 told me that you can have perfectly solid hip bones and still get osteoporosis in your spine. And of course, they never test my spine's density because there's metal there!)

What does it matter whether the spinal fractures are caused by cancer or by something else? Of course it would be a relief to think that the cancer metastasis has not gone that far yet. But the other problem is: in addition to chemo, should I have radiation to my spine? Apparently, it can be quite successful at eliminating pain, but it would be crazy to submit to all that radiation (and the risk to my heart and lungs, plus the side effects) if it won't help.

Meanwhile, Dr. 12 says he'll let me know what his radiologist says early next week, and suggests I should go ahead with the chemo. The biopsy/vertebroplasty would take a few weeks to set up, and he seems to think I could undergo the procedure while having chemo. What my oncologist will say to that, I won't know until I see her on March 3. I am not feeling very well as it is -- can't seem to shake the tail end of a cold I got 10 days ago, my stomach is sore and sick, I keep sprouting new pains here and there, I have chills and sweats that seem different from my normal hot flashes -- just stress? Once the chemo starts, God knows how much worse I'll feel.

As for the fact that I now can't walk, stand up or sit up for more than a few minutes without being overwhelmed by the pain and pressure now centred in my left shoulder blade, Dr. 12 agrees that the underarm surgery has probably made that worse. He suggested that taking lots of codeine is better than lying around all day getting no exercise. But I don't find the codeine really helps that much. Anyway, he tried putting my arm up in a sling, which didn't help. Then one of the orthopedics staff put a simple figure-eight brace around my shoulders, which did make me feel a little better, but not for long.

So...on Monday I see a second orthopedic surgeon for another opinion, a guy I've seen before who has a great reputation but is a little arrogant. We'll see how he responds to my "narrative."

Pathology report II

You know you're in trouble when your oncologist says, somewhat frantically, "I don't know what to do; I need some help!" Of course, my oncologist talks this way all the time, so I've kind of become used to it, as you'll know if you've read my story about the last time I went through this. She's been looked pretty ragged, actually, so maybe the job is getting to her. She was happy to hear I'll be seeing two orthopedists soon, because she's reluctant to start treatment and then be told that I need emergency back surgery. I told her I'd rather treat the cancer first than the back pain (even though we don't know that the cancer isn't causing the back pain), but she asked how I could get through chemo if I can't even sit up. She seems very hesitant about radiation, seemingly because of the likelihood of lymphedema if they fry my armpit. But she looked me in the eye and stressed how serious it would be if the cancer returns in that location.

So after going around in circles like this, we decided to get ready for chemo, which is a "systemic" treatment (it would attack cancer cells throughout my body -- hey, typo fans, I originally typed "attach" instead of "attack"), rather than radiation (which is a local treatment, and we're not sure yet which locale needs it). Depending on what the orthopedists tell me, I will start chemo in the first week of March. I'm set up to get something called a MUGA scan, which will determine whether my heart can withstand the drug family anthracycline.

And I've asked to get a Porta-Cath rather than that damned PICC line I had last time. The doc said the Porta-Cath is safer, although the other day a nurse told me the opposite. Both are used to keep a vein continuously open so that they don't have to jab my lousy veins every time they administer the drugs (the doc is recommending a "dose-dense" regime that will take four months). The PICC line leaves an apparatus hanging out of your arm that is a royal pain, and it has to be flushed every day with blood thinner (I learned to do it myself last time after a couple of months of daily nurse visits). The Porta-Cath is inserted just under the skin in your upper chest wall and leaves a scar but requires less maintenance. The PICC line gets infected quite easily, I know from experience; I don't think the Porta-Cath is as susceptible (I could be wrong), but the nurse told me that because its terminus is closer to your heart, infections are more deadly. Still, I think I'm going to chance it.

I told the oncologist how crappy my ribs feel just under my breasts -- a kind of pressure on my diaphragm that burns and makes my stomach feel sick -- and pointed out that that could be caused by my sagging spine, according to what I've read. She shook her head and said it was also a symptom of bone metastasis. But she did make some encouraging noises about stopping the cancer in its tracks with the chemo.

Pollyanna moments:

• After I succumbed to weepiness for an hour or so last night, I was casting around for things to make me laugh, and I watched a goofy guy movie, Harold and Kumar Go to White Castle. It was pretty stupid, but I did split a gut during the scene in which the guys steal the punks' vehicle, are shocked to discover that the tough guys' mixed tape in the deck contains all soft-rock girlie music, but gradually get sucked into singing along exuberantly to "Hold On" by Wilson Phillips.
• I also got a huge chuckle out of an email joke my brother sent me that compared a dog's diary to a cat's (the dog simply listed his activities with glee -- "2:00 p.m. Played in the yard! My favorite thing! 3:00 p.m. Wagged my tail! My favorite thing!" -- while the cat composed a long, paranoid disquisition on his captivity that was worthy of Conrad Black).
• I hosted my book club on Thursday night and spent most of the evening on my back; couldn't even eat my meal at the table without lying down every few minutes. It is kind of weird that some of the women in my club who are older than my mother -- fit as fiddles and running from theatre rehearsal to environmental-movement meeting to volunteer activity -- cleaned up my kitchen while I and another member my age, who is adjusting to late-onset Type 1 diabetes and fibromyalgia, lounged in my living room talking about assistive-devices insurance, long-term disability and painkillers. Health is the luck of the draw in some cases, and our older members have had their share of bad times; it's great to see that bouncing back is possible. Anyway, the Pollyanna moment was being surrounded by these great women who've been meeting monthly for 16 years. They're such a source of strength to me.
  

Pathology report I

It's funny how the way one perceives information depends on the context in which it's offered. My surgeon is no dummy. Dr. McCharm greeted me today in his office with a big smile and "Looks like we did well!" or words to that effect. He went on to stress that everything that was cancerous in my armpit had been removed, and removed cleanly, with "clear margins" (meaning the areas with cancer were discrete and distinct, and the tissue immediately surrounding them that was also removed contained no cancer cells). This means his job was not complicated and he did it well.

But of course the fact that there was indeed cancer to remove -- in four out of the seven lymph nodes extracted, as it turns out -- is not good news. And a minuscule growth that showed up in my old scar was malignant as well. He seemed really chuffed about that, too, since from his point of view he was smart to remove it even though everyone thought it was scar tissue. Weren't we lucky he'd taken it out? Well, yes ... I kept feeling as though I should be as upbeat as he was even though it really didn't sound like great news to me.

Still, things could be much worse, and I decided to relax a little for now, perhaps because of the doc's cheery preface, perhaps because I find sustaining terror for more than a few days so very hard. I lurch from test to result, from doctor to nurse, facing then putting behind me one more thing I once thought I could never withstand, occasionally latching on to some bit of hope, often shoving aside frightening symptoms or questions that I won't be able to address until the next appointment, and none of my reactions makes a hell of a lot of sense to me.

I did do something I promised myself I wouldn't; I asked him how likely it was that I would collect my old-age pension. He gave me the old "statistics don't mean much" line, but ventured that there was a 25% chance the cancer would show up somewhere else. That's pretty close to the odds I was given five years ago, and the cancer left me in the dust. Seems unlikely to me that it's not lurking in my body somewhere as I write, whether the sketchy bone-mets diagnosis proves to be accurate or not. But 25% is better than I thought it would be.

Speaking of the bones, when I got home I received a message that the orthopedic surgeon I've been trying to get in to see since last July has agreed to see me next Tuesday. I guess my oncologist applied some pressure. So I'll be seeing two orthopedists within one week of each other, and it will help to get two opinions. And not a moment too soon. I had to be taken out of the hospital today in a wheelchair because I couldn't stand up. I feel as though an anvil has been attached by a string to my left shoulder blade and I am dragging it everywhere. It's not just painful but truly uncomfortable; the sensation of intense pressure leaves me panting, as though I can't breathe, when I know my lungs are in fine condition.

Meanwhile, I had the staples removed from my incisions, and, as I feared, I still feel as though I have staples, the drain, and masses of tape pulling on my skin when there is nothing there now at all. "You'll never feel the same there," warned the surgeon, but he assured me the pinching, pulling numbness would die down. I saw the patient navigator, who told me to buy Vitamin E ointment to massage the sutures with, something I did five years ago but had completely forgotten.

Tomorrow I will see the medical oncologist again, and perhaps will get a better idea of when chemo will start and what it will be like. More catch-22 decisions to make, I'm sure: Anthracycline? Could cause a heart attack if I make it to 70, but I probably won't, so who cares? Taxane? I'll lose the feeling in my feet, but it will probably come back! I am trying to decide what colour of wig to get. My sex life was always better when I had red hair....

Pollyanna moments:

• A smart-looking woman in a suit at the hospital saw me grimacing against the wall waiting for an elevator with my friend and insisted on fetching a wheelchair for me and wheeling me to the front door. "I'm in the logistics department," she told me when I asked who she was. "This is just what we do. We're nice at this hospital."
• Dr. McCharm charmed both me and the friend who kindly accompanied me to my appointment, as did the patient navigator and the breast-centre nurse. They're truly lovely people (so is my friend, Peggy).
  
• Two much younger former colleagues came over last night, made me dinner and regaled me with gossip and industry news, making me feel for a couple of hours that I was in the real world again.
  

Armpits afire

Newsflash: This business of being confined to a sick bed (or sick couch) is not a lot of fun; yesterday I felt like I'd just about had it. My head cold raging, my shoulder blade on fire, I was bored and felt sorry for myself, wondering if I'd ever get my life back. How many episodes of Two and a Half Men and Law & Order could a person watch? Why did I paint my living room beige? How has my world become so small, my focus so narrow? Blah-di-blah-di-blah.

This morning my cold was a smidgen better, the kitchen was filled with sunshine and I decided to stop being so mopey and lazy. I took my Tylenol 3s and then washed the dishes, something others have been doing for me for days. I got through them before the pain got too bad; encouraged, I did my exercises. Then my neighbour Daryl and I walked to the drycleaner, the post office and the grocery store (to pick up Kleenex), amid filthy, crusty piles of snow that look so ugly but at the same time so beautiful because they're melting, shrinking, signalling spring. Even the sea of garbage now exposed on the sidewalks and in alleyways is a harbinger of a new season. When the pain got too bad, we stopped at a greasy spoon and ate wonderful, horrible food and warmed up with tea. I made it home by scuttling along the sidewalk while propping up my shoulder blade with my thumb. It's embarrassing to me how much worse pain is when I'm alone. As soon as I said goodbye to Daryl, I scooted in the house, slammed the door and howled like a banshee. But while we were walking, it was sort of tolerable. I don't think Daryl was fooled, but distraction does help.

In any event, it was wonderful to be out and about in the neighbourhood in the sunshine, with temperatures above zero. I feel much more human, despite the pain.

The pain is weird, though. My left arm, armpit and left breast feel alternately numb, pinched and burning. My upper arm feels hard in spots, and I'm sometimes overwhelmed by the sensation you get when feeling returns to a limb that's "fallen asleep." While I had a drain hanging out of my underarm, attached by a little stitch, I assumed that was making me feel mucho uncomfortable, but the removal of the drain yesterday didn't seem to make a difference; in fact, last night my whole underarm area felt much worse than it had since the surgery, like it was made of solid plastic. Then I thought it was the heavy dressing on the drain wound fastened with tons of tape that was making my skin pull and pinch, but the removal of the dressing isn't helping, either. Now I figure that getting the staples out in two days will make a big difference.

But the booklet I should have been looking at two weeks ago but temporarily misplaced, "Exercises After Breast Surgery," says, "You may feel sore, numb or a tingling or burning feeling on the back of your arm or your chest wall if surgery has irritated some of your nerve endings. These feelings may increase a few weeks after surgery" [italics mine]. I guess this is normal. Still, combined with the back pain, it's yucky, and I wonder if favouring my left underarm and lying around too much is creating a vicious circle with the shoulder blade.

Tomorrow morning, I'm going to a massage therapist for "lymphatic drainage massage." The therapist suggested on the phone that the backed-up lymphatic fluid could be connected to my cold. Sounds dubious. But I'm sure some massage could help to get things flowing again.

Pollyanna moments:

• I do not live in southeastern Australia at the moment. But two good friends do, and God knows how they cope with the heat and the impact of the deadly fires happening there. Melbourne is a splendid city, but I could never deal with those summer temperatures.
• a friend sent me photos taken by her partner, photographer Tony Beck, of birds in Ecuador. Now that life has slowed down and straitened, I do find much more pleasure in small things, and I notice details I didn't before, cliché as that sounds. I'm no bird-watcher, but the spectacular colours and tiny, beaky faces were almost exhilarating. Especially inside my beige walls. And I loved the names: Long-tailed Sylph, Shining Sunbeam, Cinnamon Flycatcher, Lesser Kiskadee.
• a goofy YouTube video sent by a friend that induces laughter over a man's weird laugh. (It's a bit drawn out, but the ending is worth it.)
  
• french fries with gravy.

Whining and gratitude

OK, so I've caught a cold -- now I'm REALLY allowed to whine. Not a bad one, so far, and I haven't had one in such a long time, I've forgotten what it feels like. But on top of an irritated underarm drain, stinging suture staples and back pain that won't allow me to stand up for longer than 10 minutes, it's making me cross.

I was more than cross last night, after reading some scary things about the prognosis for the type of breast cancer I probably have (recently coined "triple-negative," which sounds good but isn't). Just can't go there. An old friend listened to me cry on the phone, bless her, and said all the right things. What makes me laugh is the number of times someone has said to me in the past two weeks, "You're taking this amazingly well! You have such a great attitude!" I think I have managed to be pretty cheery most of the time, but there are moments when it's all a bit much.

What do you say to someone who has cancer? Damned if I know, and I'm certain that the number of boneheaded remarks I've made to the sick people in my life would qualify me for a foot-in-mouth award, and the ways in which I've tried to be helpful that probably weren't helpful at all are numerous. While in a hospital waiting room recently, I picked up a copy of Homemakers' Christmas issue, which contained a frank and useful article by Lesley Young called "How to Help a Friend Who Has Cancer." I have encountered many of the same responses Young has, and I don't react the same way she does to all of them -- it's an individual thing, and much depends on the kind of day you're having, what concern is weighing on you at that moment, your relationship with the speaker, how advanced your disease is, and, I've discovered, the quality of email correspondence. For example, unlike Young, I love it when people tell me positive cancer stories, about people who defied the odds and outlived the predictions, etc.

But like her, I could do without some responses. I've experienced the person who makes helping me all about him/her instead of about me; the close friend who seems to simply pretend nothing is happening and never mentions it or even calls; the friend who, in the face of an inaccurate diagnosis, blames me for exaggerating rather than my doctors for screwing up; the friend who imposes on me when I can least afford the energy to respond; the friend who scares the daylights out of me by commenting in grave tones on how dire my prognosis is; the acquaintance who runs into me on the street and, with a surprised look on their face, says something like: "So...you're...you're...still..." as though they didn't expect to encounter me walking above ground. In all of these cases, I believe the individuals' reactions reflect, among many other things, concern for me and fear of losing me. And for that I am grateful. And, as mentioned above, I am the last person who should be casting the first stone.

I used to think that if I got cancer I'd tell no one, because I didn't want people to be kind to me just because I was a cancer patient, or just to assuage their guilt or build up their altruistic resumé. I wanted people to want to be with me because I was charming and fun and intelligent. Of course, the very idea of my telling no one is a laugh and a half; I'm not a very private person, and because I'm alone I need help. But since my friend Adele died (see my article on what I learned from her), I am more realistic about people's need to give, my need to ask for assistance, the way illness reminds people of their own mortality and sense of family and community, as well as the way time slips away from us unless occasional crises remind us that no one is here forever. Giving and receiving involve a complex dance, with myriad motivations; being part of that dance makes us human. I've let a lot of people into my life, in place of having one intimate relationship; that arrangement has its drawbacks, but also brings great gifts.

Speaking of gifts, how's this for a Pollyanna moment: a Canada Post truck pulled up to my house a couple of days ago and delivered a strange round package from a person in Ponoka, Alberta, whose name was unfamiliar. "Who do I know in Ponoka?" I asked myself. It came with a pink-ribboned card explaining that the sender was the niece of my best friend's mother, who is 87 and recently had surgery for breast cancer. She lives on a horse farm near another small town, in northern Alberta. She had asked her niece to send me what's called a prayer shawl; the Ponoka United Church "Yarners" knit shawls for people with cancer, apparently; the card included a heartfelt poem containing lots of good wishes. The small-town community-oriented girl in me was delighted to see people doing such a thoughtful thing, but I was a little apprehensive when I opened the package. I'm not much of a shawl wearer, and I'm picky about clothes, especially colours (I don't wear light ones). Even something that might be quite nice for someone else would undoubtedly be the wrong colour for me. But I needn't have worried -- the shawl is gorgeous: a nubby yarn in a deep dusty rose and browny-grey mix, which perfectly matches my bedroom and feels warm and cozy around my shoulders. I put it on and didn't take it off until bedtime. It brings a little piece of small-town Alberta into my home, something that's dear to me since I've spent a great deal of time out there. And it's now vainly trying to absorb my violent sneezes.

Another, more shocking PM: Diane spent the afternoon doing eight months' worth of my ironing -- she enjoys it! Or so she said.

Getting horizontal

The past few days have been quite social -- lots of friends coming to the house, bringing yummy food, washing my dishes, changing my bed, etc. It would be great fun if I weren't spending most of the time on my back with a soggy hose hanging out of my armpit! And I feel silly ordering people around my kitchen: "That pot goes in the cupboard next to the sink"; "Hmmm...Can you put some cilantro in the coleslaw?"

But I can't walk very far before the back pain overwhelms me. Some days are better than others, and it depends how much codeine I take and when. Up until now, I have been fairly comfortable lying down with my head and shoulders propped on a pillow, which means I can work at my laptop, watch TV, read, etc. In recent days, however, the shoulder blade pain, which doesn't seem to respond much to drugs, torments me even in that position, until I am forced to lie completely flat on my back. In that position about all I can do is stare at the ceiling and wonder why my house cleaner didn't dust the overhead fan. Sometimes I can balance my laptop on my knees in such a way that I type precariously for a few minutes, but it's awkward.

I went to a neurosurgeon today (sort of a waste of time, but a stopgap until I can see an orthopedist), who says it looks like I have a collapsed vertebra. Whether it's caused by cancer or something else, he's not certain, but he thinks the orthopedist may suggest surgery on my spine. I have moments when I simply can't believe all of this is happening to me at once, and I fear greatly for my future, especially my ability to work. I simply have to push it all to the back of my mind. Yesterday morning I had my first really big cry in a couple of weeks; I find mornings scary these days. But there's lots to do to fill up the time (the filling out of forms continues apace, not just because of illness but because I am still quite a recent employee at my job and the company requires enrollment paperwork, too).

Pollyanna moments:

• Late on Sunday morning, a congenial rep from Bell Sympatico called me and said, "I understand there is still an unresolved issue with your wireless, and I'd like to fix it." And he did. I was impressed that Bell followed up. So now I am not being strangled by an ethernet cable while I squirm on my couch.
• Christine took me to the Bay this morning after I saw the doctor, and I was able to stand upright long enough to buy lovely new pale-green sheets at 60% off, and threw in a Godiva chocolate bar.
• My home-care nurses have been wonderful, and they cheerfully come by at the drop of a hat if I call to say my drain isn't draining.
• There are lots of opportunities to watch (or listen to) Two and a Half Men on TV every night even though I don't have cable.

Up and down

After a day back on the anti-inflammatory drug, the screaming spine pain has calmed down again, which is a relief. The burning shoulder-blade pain comes and goes. My intestines are functioning again and I did some stretches and exercises today -- I can raise my left arm a couple of inches higher than I could yesterday (Rosemary drew a line on the doorframe with a pencil for reference). But like yesterday, I feel a little queasy and headachy. I wonder if it's anxiety. Probably just from lying around too much. Today I would like to go outside for a walk.

Last night I finally did 10 minutes of Googling about the symptoms of bone metastasis and the symptoms of osteoporosis, and I have almost none of the former and all of the latter. Still, there are tests for the bone mets that the doctors haven't done yet -- why, I don't know. I am mightily confused, and angry that my GP has not gone to bat for me. Why do I have to be my own GP?

I have also been reminded of the ongoing conflict between home-care nurses and hospital nurses. When I went through cancer treatment five years ago, I had a home-care nurse visit regularly for months to help maintain my PICC line, the catheter that hung out of my arm for intravenous injections. It was a pain in the ass, to say the least, and the hospital nurses I also saw regularly always disagreed about what their duties were in maintaining it -- "The home-care nurse is supposed to do that!" -- and there were always differences in what supplies they had available to them. I wanted the hospital nurses to change the dressing because they had better dressings than the home-care nurses were given, which was hardly their fault.

Similarly, this time I have a home-care nurse coming to maintain the fluid drain from my incision. I didn't even get to see the home-care nursing coordinator before I left the hospital -- I was told she was too busy -- though she called as soon as I got home to say angrily that she could have seen me but the hospital staff had got their wires crossed. So I didn't see a nurse until yesterday, and he was peeved that he'd been given an order to see me for just three days (when I was told numerous times that it would be at least a week before the drain could be disconnected). And he was disgusted that I'd been sent home with no supplies; I dug out some leftover saline solution and dressings that I'd kept from five years ago, and he made do. Then he pointed out that my drain was completely blocked, which could be causing infection; he got it going again. By suppertime, it seemed blocked again, so I called the home-care office; another nurse told me that it wouldn't cause infection and that if I couldn't get it going again I shouldn't worry. She told me how to clear it, and I tried, but I don't think it worked.

Pollyanna moment: Today I get to take my first shower in four days!