What this is like

It's been three months since my lymph node surgery and longer since I stopped working, and you'd think I would find time heavy on my hands, or at least be catching up on all my reading and all those other things one says one will do some day if one ever "breaks a leg." How many times have I longed for an imposed period of time off, thinking I'd write and write and write, and read and read and read. In fact, I don't feel like reading or writing or even watching a movie much of the time; I just want to pace, though my back doesn't allow too much of that. Assuming it's the steroids that are making me feel so jumpy and distracted, I would have to say they're the worst part of chemo. And it's difficult to find a comfortable position in which to read or write. In any case it's only in the past couple of days that I've started to feel I don't have enough to do. Up till now, my days have been taken up with lots of medical appointments and visits from friends; insurance bureaucracy; blogging; trying to keep the house tidy; responding to emails and phone calls. Most days, aside from that, all I had the energy and pain-free moments for was washing some dishes and taking a bath.

Still, now that the back pain is somewhat lessened and the weather is nicer, I've managed to get some little things done around the house, always working in short stretches, and have had some walks by myself to do errands in the neighbourhood.

• I found a way to print out my addresses from the Address Book program on my Mac, a project I started a couple of years ago when I purchased a program called Roll Call and some perforated pages that would fit my Filofax -- and then I let them gather dust. I ended up having to export the text (which is why I needed Roll Call) and formatting it myself in Adobe InDesign, and then printing pages one at a time so I could make them double-sided. It was complicated; only somebody with time on her hands and my ability to waste time on small details would do something like that (yet why do I find it hard to read and watch TV?)
• Yesterday I found a position I could sit in that allowed me to knit for a few minutes at a time, so I started making dishcloths.
• I had a semi-all-nighter last night, and wrote thank-you cards till 3:30 a.m. It hurt. My handwriting has deteriorated and it takes a lot of concentration.
• For the first time this week I have managed to do some cooking.
• Yesterday, I hauled out my mindfulness-meditation tapes and managed to just be for an hour, which is an accomplishment in this ADHD-like state I'm experiencing.
  

Other weird things: during the period, for about 10 days post-injection, when my body is overwhelmed by this sweet chemical taste, leaving my mouth feeling as though I just rinsed with strong, sickening mouthwash, I also can't whistle! I'm not a bad whistler, actually; it's something I like to do with my dad. God knows what weird things the drugs do to the nerve endings in your mouth. At least I don't have any mouth sores this round.

Spoke too soon

The stabbing pain that I felt through my right shoulder blade a couple of weeks ago seems to have heralded a return of problems in that area -- bone mets or osteoporosis or pulled muscle? Steak or lobster? Can't decide. Don't want to know. But in any case, I am not walking as well as I was last week and again having trouble sitting at the table to eat.

Rosemary was with me all day yesterday and cooked up a storm with every wilted vegetable and leftover in my fridge. My stomach was not very good, so it was great to have a nurse. To celebrate the summer weather, just before the rainstorm began, we walked out to a new coffee shop that has just opened up in my neighbourhood, the Sideshow Café. I nearly didn't make it, but I managed. I live in Little India, which, you can see from a story I wrote called "Indian Summer" (found here), I adore, but the monocultural nature of the stores and restaurants does mean that occasionally one longs for a place to get a croissant or a coffee that isn't Coffee Time. Just up the street from me on Gerrard, east of Greenwood, there is an old theatre that for the past few years has housed the Centre of Gravity Circus School. Since the barbershop that took up the corner of the building picked up and moved, some friends of the circus school opened up the coffee shop in that space about three weeks ago. It's funky and cute and a welcome addition to the neighbourhood. Neo-hippie, as Rosemary calls it. With croissants brought in from Bonjour Brioche, no less.

Pollyanna moments:

• old friends, students and acquantainces popping up out of nowhere to congratulate me on my award, I think because Jian Ghomeshi announced it on CBC Radio One's Q.
• blue jays in the back yard, and pink tulips, and buds on the lilac bush. And my basil seedlings are coming up.
  

"Into the hands of your friend"

A couple of people sent me a link to a recent New York Times article reporting on studies that showed the positive health effects of having a strong circle of friends. It's not the first time I've read about such theories. If they're true, then I'm sure I have had extra time added to my lifespan as a result of the support I've received in the past few months. Even the National Magazine Award that I'm going to receive feels like a special boost from colleagues.

Reading the article made me go and listen to Pete Townsend's great song "A Friend Is a Friend" (lyrics here).

"Deliver your future into the hands of your friend," he writes.

Moments

This round of chemo is making me less sick than usual, but I'm awfully tired. Can't keep my eyes open sometimes. And my brain is a little fragmented again. I'm continuing to be able to walk more, though the new pain in my hip bothers me here and there. The news from the oncologist: my blood marker for bone mets (alkaline phosphatase) is higher still, but she continues to think it's an anomaly. White-blood-cell count is good; no bad liver markers, no hypercalcemia. She's decided to give me an injection next week of a drug called Zometa, which is meant to strengthen bones that have malignancies in order to prevent fractures.

I only learned through talking to friends that the cause of my hyperness in the past two chemo rounds is actually the steroid I have to take for three days after the injection (dexamethasone). So I'm looking forward to another night soon of being energetic enough to clean my house at 3 a.m. Slept pretty well last night, though.

A pretty big Pollyanna moment this week: the National Magazine Awards nominations were announced, and I have not only been nominated for one of my articles, but I am to receive an award for outstanding achievement. Kind of made my day!

Tentatively hopeful

I've had much, much less back pain in the past three days, and I'm keeping my fingers crossed that this trend will continue. And, because this week was the last in this chemotherapy cycle, I've also been feeling more energetic and less sick all around than I was last week (though I've got another lousy mouth sore that makes eating uncomfortable). I'm not looking forward to the aftermath of my next injection, on Tuesday, but at least I can say I'm approaching the midway point of chemo.

So I've been feeling almost like a human being! I've gone for several short walks without my wheelchair, a real pleasure in this great weather. It still hurts a lot, but I can manage. I never dreamed that walking with an aching back, a sore hip, sore ribs and a frozen armpit would constitute a huge improvement, but I can walk.

I've also got a (used) wig. I didn't think I'd want to wear a wig much, but I kind of like it. It's bright red -- not unlike the colour I used to dye my hair in the ’90s. Thanks to the Canadian Cancer Society for providing it and to the person who donated it.

Just getting out of the house and driving to and from a couple of appointments is fun. Being cooped up in the house has been an eyeopener. Places that I once found mundane are exciting to view when you haven't been able to walk out your own front door and get somewhere on your own steam for three months. On the way back from the wig shop, Peggy and I ended up taking a circuitous route back to my place in her car because of all the construction downtown. Peggy was apologetic, but I felt like a kid at the county fair. "Bay Street! Wow! And there's my bank!" It was like going for a Sunday drive.

Lots of Pollyanna moments.

• Myra brought homemade samosas made with Red Fife wheat flour, and a beautifully beribboned wand that she made from lavender that she grew. And then she helped me plant some seedlings for my herb garden.
• Some red miniature tulips are up in my backyard (and the squirrels haven't murdered them yet), and there are plenty of buds on the lilac bush.

More up and down

It's three months today since I found out the cancer had returned -- and since I stopped working. I believe I would not have survived up to now with my sanity more or less intact without the friends, relatives, neighbours, coworkers and acquaintances who have kept me afloat by visiting, bringing food (and flowers!), washing my dishes, changing my bed and taking me for walks with my wheelchair. There are days when I feel frustrated and angry because I am trapped in my house -- indeed, on my couch -- especially when the sun is shining. Then I am humbled when someone who lives in the west end -- often someone I don't even know very well or haven't known very long or haven't seen in 20 years -- ventures all the way out to my place in the east end to take me to lunch or pick up a prescription or bring me a litre of milk or accompany me to the hospital. I have set up a wiki website where people can follow my calendar and sign up for a day to check in with me, and it's been quite helpful.

I do perform chores around the house, but most days I can only do them in two-minute spurts before the pain becomes too great. Having said that, the screamingingly horrible pain has died down, and I don't often feel that tremendous pressure that means I ABSOLUTELY MUST LIE DOWN THIS INSTANT. Instead, I simply have pain that makes me moan and feel miserable. That's an improvement! My theory is that the spinal fractures have healed (I'd read that they would). What's causing the rib pain, and, in the past week, hip pain, is still unknown. And a couple of days ago I leaned down to look at something and felt a sharp pain in my other shoulder blade, like I'd pulled a muscle, and now that hurts. And, of course, my left arm still feels like it's made of rubber above the elbow. It all worries me, yet I still have no pain when I lie flat.

There have been more days when I was able to walk a fair distance without much discomfort at all -- for example, I went to Kitchener on the weekend to have Easter dinner with my family, and was able to walk comfortably from my parents' apartment to my sister's house, about six minutes, and back. I felt more human than I'd felt in months. But these days always seem to be followed by days of increased pain, like yesterday. It feels like one step forward and two steps back.

One big development was that I took the Greyhound bus to Kitchener, something I couldn't have done a month ago. My Obus back support was essential. A friend drove me to the terminal, waited in line for me and persuaded the driver to let me on the bus before the other passengers. Guess what? A good way to get a bus seat to yourself is to don a turban, sunglasses and a medical mask. I looked like Joan Crawford visiting an operating theatre. But I really wanted to avoid germs, and I purchased a whole box of masks. My mother didn't recognize me when I got off the bus.

Pollyanna moments:

• My little niece and nephews (ages 9 to 13) seem to be getting used to my hairlessness and are acting less uncomfortable in the face of my illness, which is a relief. It was fun to spend time with them on the weekend.
• I broke down and got cable TV, although I must say that there's only marginally more programming worth watching than I had with an antenna. Still -- more Two and a Half Men, with better reception.
• Yesterday I woke up and realized that the unusually low temperature in my house wasn't just my imagination -- my heating wasn't working. I called Direct Energy and played the cancer card, and a repairman arrived in 20 minutes. Turned out some connections had come loose in my thermostat, God knows how. I got very poor service from Direct Energy when my new boiler was installed four years ago, so they were somewhat redeemed.
• On a sunny day recently, I did laundry and hung it on the clothesline, the first clothesline day of the year. I had to stop every couple of minutes, and then had to lie down for the rest of the day, but it was worth it. Hanging out clothes to dry is such a pleasure (see this earlier post and this one).
  

Adventures in online shopping

Because I spend so much time lying on my back but still in some pain, I've been struggling to find a comfortable position in which to use my laptop, especially to type. My friend Diane sent me a link she found to a product called the Laptop Laidback Ergonomic Laptop Table, for sale on a site called ActiveForever.com, where you can get a wide variety of medical support products.

I took a look, but wanting to be a discerning shopper, Googled "laptop table" and came up with not much except another product that I thought looked a bit more versatile, called a LapDawg. So I ordered that one. I believe it's a Canadian product. It arrived promptly; I opened the box, tried to assemble it and within 90 seconds had sliced open my thumb on the edge of a metal slot that the legs kept falling out of. I immediately packed it up, blood stains and all, and returned it. I did get a refund, except for the shipping costs to send it back.

I went back to ActiveForever.com, and tried to order the Laidback. The company is based in Arizona and would not ship to Canada. No problem -- I called a friend in Chicago, who said I could have it shipped to her, so she could in turn ship it to me. But the online payment form would not even accept payment from a credit card with a Canadian address. At their suggestion, I ended up using a third-party shopping service called MyUS.com, which, for a fee, will provide you with a U.S. address to ship to, and then forward your purchase. For another fee, I had to use their "personal shopper" service to have them actually buy it, pay for it, and rebill me. It was quite a process, and all in U.S. dollars, so I ended up paying about double the price of the item.

When it arrived, I noticed a label on the back that said it was made in China -- and designed in Nova Scotia. Suddenly I realized that I had never actually Googled the name Laptop Laidback Ergonomic Laptop Table (although I did Google "laptop table," and the Laidback, I'm sure, only came up at ActiveForever.com). As it turns it, you can order it directly from its Nova Scotia maker. In Canadian dollars. Or from Amazon. For all I know, it's for sale at a medical-supply store in Toronto. Sigh. Lesson learned.

The good news: It's a wonderful product. It took a couple of friends 15 minutes to figure out how to assemble it, but it's sturdy and does exactly what it should do, which is provide a way to use a laptop on one's back, at virtually any angle. If you're forced to lie completely flat and not lift your head at all, you can attach little Velcro pads to the bottom of your computer and stick it to the table so it doesn't fall on your face.

If I use it while lying on an incline, I can't type for very long without considerable pain, but that's not the fault of the table. In any case, I highly recommend it. Oh, and MyUS.com does work.

Look Good Feel a Little Better

The last time I had cancer treatment, I did not opt to attend a Look Good Feel Better workshop, the free two-hour session sponsored by the Canadian Cosmetic, Toiletry and Fragrance Association Foundation that helps women with cancer learn techniques for wearing makeup, wigs, hats and scarves. Although I wear makeup, I don't fuss with it a lot, and I didn't lose my hair last time, so the workshop didn't seem like my kind of thing. A couple of years ago, though, I was hired to copy edit, fact-check and write for the Look Good Feel Better magazine, and I found interviewing various participants inspiring and interesting. It became clear to me that the workshop offers not only practical tips (they focus on the special needs you develop during drug and radiation therapy, which in addition to hair loss can cause changes in your skin, higher susceptibility to sun damage and infection from contaminated products), but an opportunity for women to gather with other women who understand what they're going through, and who are STILL ALIVE. Even women who never wear makeup and don't care a fig about their hair can feel uplifted by spending two hours playing girlie-girl when most of their days are made up of much more serious stuff, and looking a little better really does raise one's spirits.

So yesterday I went to an LGFB session at Princess Margaret Hospital, which is held at their wig and hat shop. It was fun. I got to ask embarrassing questions, such as will I lose my OTHER body hair (it varies from person to person, apparently), and got a lesson in applying eyebrow pencil just in case. It was joyful watching the one woman in the group who had lost her eyebrows have them drawn back in. The lack of eyebrows does make such a difference to one's face, more than a bald head does, I think. Anyway, she looked ecstatic when she peered in the mirror.

I also got to be the hat and wig model, which was a laugh since I've got a weirdly shaped head for the purpose. The two scarves I ordered online, a nice soft cotton thing in dark brown from Just in Time that can be wrapped like a turban, and a lined patterned red silk scarf from BeauBeau, are quite lovely, but given my family's reaction to them, I think I'll sell them on eBay. When my brothers saw the red scarf, they both said "Take it off!," preferring the short hair they've seen me with many times before. (How they'll feel when I'm completely bald, I don't know.) When my sister saw it, she almost choked on her laughter; after getting her breath, she asked, "Where's your parrot?" (I confess the first time I put it on, I felt as though I should be cradling a crystal ball.) The consensus, not that I'm surprised, is that a bald Cynthia is more attractive than Cynthia in headgear, though I do think I'll make good use of a nice Puffin Gear sun hat I bought last summer. I have a couple of ball caps that I could use in a pinch, too, though they look pretty funny.

Nevertheless, the LGFB ladies oohed and aahed as I modelled various berets and cloches and scarves, and I did enjoy the experience of testing out a wig. It was more comfortable than I expected. I don't think I'll buy one, though, because they're fairly pricey and I'm hoping I wouldn't need it for long. My sister pointed out that we've come a long way since the days (not so long ago) when even the words "breast" and "cancer" were not mentioned in polite company, and a bald head was something to be hidden. She knows I'm more of a natural kind of gal. She also knows I'm obsessed with my hairstyle, and I have to admit that not having any hair at all is a relief of a sort.

Speaking of being natural, it's not lost on me that the bucket full of free beauty products that are donated by the big cosmetic companies and given to each LGFB participant to take home undoubtedly contain chemicals that some people think are implicated in increased rates of cancer in the population. As usual, my desire to use only paraben-free, organic products is at war with my horror of throwing things out or not using things up -- and of turning down a freebie.

Chemo Floyd

The effects of chemotherapy are bizarre to say the least. I started this cycle out without much nausea, but as soon as I thought I was out of the woods (and took one or two fewer anti-nausea pills), I'm back to feeling sick. But it isn't just sick to my stomach. There's a nasty sweet taste in my mouth -- no, it's not just in my mouth, it's in my entire body. In all my bodily fluids, even. It makes food taste bad; I'm ravenous but not hungry at the same time. Eating anything sweet seems sickeningly superfluous. I'm living on pasta and cheese and craving bacon and pork chops and other savoury things.

Meanwhile, two nights ago I had another all-nighter -- I was waltzing around the house as though it were broad daylight, not the least bit interested in sleep, full of energy, watching Pink Floyd concert DVDs with the sound up full blast. I didn't have to be anxious because I knew I didn't have to go to work in the morning. I was in a perfectly fine mood. But like last time, after about half an hour's sleep, I got up at 8 a.m. feeling like a dishrag, and I've felt exhausted and queasy ever since.

After a week of the blues, I resorted to music therapy (see Pink Floyd above; actually it was David Gilmour at the Royal Albert Hall, accompanied by David Crosby and Graham Nash, and David Bowie -- maybe it should have been called the David Show). I was saying to Diane that I was feeling new effects of "chemo brain," an inability to focus that I developed during chemo five years ago and never completely recovered from. I was pacing the floor a lot (also partly because I can't find a comfortable position to sit or lie in) and it seemed as though my brain cells were not lined up in the right direction. Music -- everything from the Monkees to the late Oliver Schroer's haunting voilin recorded in cold empty churches along Spain's Camino de Santiago pilgrimage -- seemed to help create some order in my brain again.

"Like defragmenting your hard drive," said Diane, and I had to agree it was the perfect analogy. Not that I ever defrag my hard drive, since I have a Mac, but I've seen it done, and I can picture those little coloured bits arranging themselves between my ears.

Pollyanna moments:

• Drove to Kitchener with my brother today to see Mom and Dad and my sister, and it was great to be out of the house and in the (apparently to be short-lived) spring sunshine. Even if I did feel like I was going to hurl most of the way.
• David Gilmour's enduring, still clear and light and fresh voice and guitar work on "Wish You Were Here." I remember one summer evening about six years ago after I'd just visited my friend Adele, who was days away from death, at Princess Margaret Hospital, when I was sitting on the curb waiting for my streetcar, and there was a young busker nearby playing "Wish You Were Here" on a guitar. Another young man was sitting near me, and we both spontaneously began to sing. It was one of those urban summer moments that sounds corny, and I suppose was corny; but it's a great tune.

Vacuumhead

Here's how my hair falls out: had it buzzed to about three-quarters of an inch, so it wouldn't fall out in longish pieces, and now my house looks like I've got a short-haired cat with a bad shedding problem (is that a contradiction?). Isabella was here and vacuumed my house, including pillows and couches I've been lying on, and finally I suggested that the best way to deal with the shedding would be to vacuum my head. Which she did. It felt much lighter and neater and skimpier afterward.

My eyebrows are still there, but the parts I usually have to tweeze are not returning. The rest of my body hair seems to be staying put, for now.

I am less nauseated this chemo cycle than the last one; my back pain has lessened (my brother would say it's because the weather is warmer), though the pressure is still there and makes me feel uncomfortable in just about any position. But I'm still cranky these days. And the steroids are making me thirsty!

Pollyanna moments:

• Walked almost all the way to the grocery store and back, mostly pushing the wheelchair.
• Having my mommy look after me.
  
• Beautiful flowers in my living room.

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...