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.