Discouraged

Yesterday was a bit of a drag. For more than two weeks, I've spent most of my time lying down, because of the fatigue and weakness (and possibly a virus) brought on by the chemo. Although my back was behaving quite nicely, I was keenly aware that my muscles are rapidly atrophying and I need some exercise. I walked to Gerrard Square Friday morning with my small cart and picked up some things I needed; it didn't hurt, although I was a little tired when I got home, but later in the day my lower back started to ache. Meanwhile, I'd been developing a tight pain in my right shoulder and the side of my neck -- the result of lying around too much, in my opinion -- so between the two pains, by yesterday I could barely move. I literally spent the whole day watching old episodes of Sex and the City on my computer, getting up just a couple of times to try to eat. I can't turn my head at all, and the pain is shooting down my right arm. It's even hard to raise a spoon to my mouth. I also have a hacking cough now.

I'm frustrated: I'm pretty sure lying down for a couple of days will make the lower-back pain go away, but I'm also pretty sure that the more I lie down, the worse my neck pain will become. Anyway, going to bed last night was excruciating -- it's been weeks since that's been true. It was a day when I felt like I simply can't make any headway, healthwise.

But I have decided to go ahead today with a long-planned trip to the Royal Botanical Gardens in Hamilton with Diane and Jill. I'll need the wheelchair, which I haven't done for weeks. Still, it's a beautiful day and I must do something to cheer myself up.

Two weeks and counting...

It's been nearly two weeks since the first Docetaxel treatment and I want to say that today I'm starting to feel human again, but I don't want to be premature; I always seem to feel worse in the evening. This morning I did a laundry and hung the clothes on the line and then had to lie down for 20 minutes before I had enough energy to get in the bathtub. I think I'm feeling OK and then I walk up the stairs or around the block and it's like I'm walking through syrup or have 50-pound weights tied to my ankles. I had a fever again two nights ago, and I'm still coughing and have a drippy nose. It's really hard to tell how much of this is chemo-related, how much Neupogen-related and how much is due to some kind of virus I must have picked up, which doesn't seem to get a lot worse or better, just lingers. I can't believe I have to go through two more of these treatments. I can't believe some people do 10 or more.

I'm trying to enjoy the weather, which is my favourite -- sunny and cool. Soon it will be a typical Toronto summer and I'm dreading that. I can honestly use the word "debilitating" when it comes to describing humid weather's effects on me, and they just get worse every year. Aside from the dripping hot flashes, I get dizzy and faint and extremely tired even when I'm not having chemo and radiation, so God knows what this summer will be like. Maybe it's time to buy some of that cheap property in Arizona...

I'm finally catching up to the episodes of Sex and the City in which Samantha has breast cancer treatment. Wondering if I'd have the nerve to go wigless to the Magazine Awards gala.

Pollyanna moments:

• My 13-year-old nephew came over on Saturday, along with my pal Rosemary, and did some gardening for me while I looked on weakly. I know it was not any 13-year-old boy's idea of a great way to spend a Saturday, and I really appreciated it.
  
• The lily-of-the-valley are blooming and perfuming my yard and kitchen.
• I heard Jian Ghomeshi play a tune on CBC Radio's Q by a Toronto band called Holy Fuck that perked up a rather bad day for me. It was called "Lovely Allen" and it's electronica music, a genre I don't usually have much of a taste for, but this particular song is cheery and fun and came at me just at a moment when I needed cheering. Here's where you can see them play it on Q. It was fun watching these young guys having fun playing it.
  
• My neighbour Daryl rang my doorbell the other day while he was mowing his lawn and presented me with a four-leaf clover!

Docetaxel no fun

This first round of Docetaxel has proved to be much more difficult than the cocktail I took for my first three chemo cycles. I spent a beautiful holiday weekend lying on the couch and watching bad TV (you've reached a low when a sunny Saturday is taken up with MuchMoreMusic's Top 100 One-hit Wonders of the '80s, which was nevertheless oddly compelling in the mood I was in).

For the first couple of days after my Tuesday infusion, I felt fine, but on Friday I woke up feeling like I'd been hit by a truck. I was very tired and weak. I continue to have a low-level stomach ache and pain in my sternum, with heartburn and alternating constipation and diarrhea. My mouth is dry and numb and stinging, which makes eating less than pleasant, and my lips and nose are very dry and uncomfortable. I've got a phlegmy lump in my throat and I'm coughing a little. My fingertips hurt a lot, especially when I put them in hot water (though I can still type, sort of--what hurts most is blowing my nose) and I'm pretty fearful of losing my nails.

Yesterday I spent a few hours at the hospital getting my blood tested, and it turned out that my white-blood-cell count was very low, so I guess that explains things. I had to get over $1,000 of Neupogen shots (luckily I have drug coverage), to be administered over the following five days by a home-care nurse.

In the meantime, Dr. Lee says I shouldn't have these gastrointestinal symptoms; she suspects I have developed an ulcer. She wants me to stop taking the NSAID I've been on since December, which I'd been thinking of anyway.

After I left the hospital, I walked over to the Eaton Centre and had a bacon cheeseburger, a rarity for me, but even rarer was that amazing sensation of walking to the food court all by myself, mingling with regular people on the street, performing an act that was so normal for me at one time but now seems precious. To move around alone in my city and grab a bite is a big part of what made me feel like an independent human being, I now realize. We'll see if my back remains this good when I stop taking the NSAID.

Make 'em laugh

Well, that last post was kind of bleak, I suppose, and this has not been a good couple of days. The side effects of the Docetaxel kicked in yesterday morning -- I feel like my whole body is wrapped in cotton; everything feels a bit numb, including my mouth, and since my left breast and underarm were already numb, I feel pretty strange. I don't have much appetite, I'm very tired, and my chest pain has returned. Going upstairs leaves me out of breath. Typing with a numb right hand is working OK so far -- hope it doesn't get more numb.

But worse, my family is dealing with a crisis in my dad's illness and its effects on my poor mom -- it's not pretty, and we all feel very sad.

So -- to bring up the mood, I'll post something funny: the results of noodling around on an anagram generator a few years ago. Here's what happens when you scramble my name:

Anagrams for Cynthia Brouse

• YOUR SANE BITCH
• CUTE HAIRY SNOB
• ONCE HAIRY BUST
• BUSY TRAIN ECHO
• AIRY BUTCH NOSE
• COSY URINE BATH
• TINY SOUR BEACH
• BASTE YOUR CHIN
• BRAINY TOUCHES
  
• THIS CORNY BEAU
• HORNY CAB SUITE
  
• BURY CANOE SHIT
• BREATHY COUSIN
• CHEAT YOUR NIBS
• BUSY ANTIC HERO
• THIS RUBY OCEAN
• BOYISH CENTAUR
• CORNISH BEAUTY

Some of them are scarily appropriate. Happy long weekend!

Morbid thoughts of a former Girl Guide

This blog is almost the only writing I've been doing, which bothers me; I'm at a stage where I feel I should be doing some more personal writing, writing for myself, dealing with private thoughts that I wouldn't necessarily publish here. I've now been dealing with this cancer situation for four months, and my perspective changes constantly. After a 10-day period of total panic right after the diagnosis, in which I assumed I was about to die, I calmed down and recognized that I may have a few years. Later it was suggested that I could be cured, although the definition of metastatic breast cancer, which is what I have, is that it's incurable.

But the doctors have been so vague about everything, primarily because they don't really know what's happening with my bones. I'm regretting that I didn't have a bone biopsy of my ribs. If there were bone mets, and the chemo worked, will they simply do another CT scan and find that the spots they saw before are gone? Will they wait until after radiation treatment to do the scan?

Because at no time have the doctors been willing to "stage" me. I don't know if I'm a Stage 4 cancer, which is the worst, or what. In the meantime, Dr. Lee says she is doing what's called "pseudo-adjuvant" treatment, which I really don't understand -- she makes it sound like she's treating the cancer as a new one rather than as a recurrence. So I don't know how to plan my life. Will I live to receive my pension? I am assuming it's unlikely, and I must admit that as time passes, I'm getting more used to the idea that I will die in the next five or ten years if not sooner. Will thinking that make it so? These are thoughts that I need to explore.

Although I don't feel great, I don't feel like I'm dying, and I do have a lot of time on my hands to do some of the things that I want to do before winding up my life, things we all say we'll do one day if we have time. Of course, part of that is simply cleaning junk out of the house to make it easier for those who'll have to take care of my household after I'm gone, and also in anticipation of the day when, if I live long enough, I may choose to scale down and move to an apartment. I should be throwing out all those old magazines, and what do I do with that small collection of naughty letters from old lovers? I read a terrific short story in Esquire, I think, some years ago, can't recall the author, about a man dying of AIDS who, after he ended up in hospital, instructed his friends to purge his apartment of sex toys before his mother arrived, a hilarious and touching piece.

I was a Girl Guide and "be prepared" comes naturally to me.

But what other secrets does one want to take to the grave? For me, preparing for death has mostly to do with leaving behind some trace of myself for my niece and nephews, since I have no children, and more important, some traces of my family and the world in which we once lived but which is a mystery to them. I have taped interviews with relatives that I want to convert to digital files and even transcribe (especially important right now are tapes of my dad talking in a way he can't do today because of his dementia); I want to photograph and log items in my house so that whoever cares will know that this tchotchke is something I bought on a trip to the Soviet Union, and that clock belonged to my grandparents, etc. I'm also working on compiling my magazine journalism, and maybe this blog, into a self-published book for the four people in the world who might want to read it one day. And, as I'm sure is true with so many people, all those digital photos are begging to be properly archived and snapshots to be inserted in albums.

My father, especially, inculcated in me the compulsion to log and date things; he never had time to write much, but he was always going around the house secreting little labels of provenance in his terrible handwriting on pieces of furniture, and writing details on the backs of photos. He was very involved with the local museum in Massey. And my mom has painstakingly kept up to date our family details using the Family Tree Maker program on her computer.

I want to write more about my family, but I'm blocked by what secrets I think they should know and what should never be revealed. As a writer of personal journalism and a person who is clearly not very private, the urge to tell all doesn't always seem appropriate. The egotism and self-indulgence inherent in thinking that the world will want to know anything about me when I'm gone is sometimes hard to fathom. I've just finished an interesting novel, The History of Love by Nicole Krauss, in which an elderly man who's lost all connections in his life and who hoards things in his apartment, says, "At the end, all that's left of you are your possessions. Perhaps that's why I've never been able to throw anything away. Perhaps that's why I hoarded the world: with the hope that when I died, the sum total of my things would suggest a life larger than the one I lived." The man turns out to have been a thwarted writer as well, and ends up leaving his words behind in a twist that moves the book along rather entertainingly.

Is it folly to try to prove that my life was larger than the one I actually lived? Will I even have time for any of this preparation? I know that when the worst comes, there'll be more pressing things to do; I've watched my friends who've died, and I know how it goes.

These are the things that are going through my mind. But I'm so lazy and tired that by 5 o'clock every day, after returning emails and doing a little house tidying and blogging and maybe some excercise and chatting with my mom and visiting with friends and eating and taking a bath and resolving whatever medical-treatment-related problems are happening that day, all I really feel like doing is playing solitaire and watching Law & Order.

Pollyanna spring

Pollyanna moments:

• My backyard excuse for a tiny lawn has been entirely taken over by wild violets and forget-me-nots, which means it's a mess later in the summer, but right now it's a ravishing meadow of blooms, along with bleeding hearts, wild silver-dollar plants with their purple flowers and what's left of the tulips that the squirrels didn't behead. My upper back was really hurting yesterday afternoon, and after trying to read lying down with much discomfort, I settled into a comfy, saggy lawn chair in the yard and finished my book club selection in the late-afternoon sunshine, my SPF-treated sunhat slouched over my face. My little patch of heaven did wonders to distract me from the back pain (as did the later ingestion of a couple of codeine pills), and the fact that, in spite of the reason, I can lounge in my backyard in the sun on a Wednesday afternoon. I took some photos this morning; it's raining out now, but the light is better for colour.

• My old pal Julia popped by this morning with fresh homemade bread! So much for the low-carb diet...it's yummy.
  

So far so good

I had my first injection of Docetaxel yesterday. I had to begin taking the steroids the day before, so I haven't been sleeping so well, but at least I'm not as tired as I was. I was a little nervous going in because a small number of patients have a bad reaction to the drug within the first 10 minutes of the drip, involving difficulty breathing and flushed skin. I didn't experience any weird feelings, although my face is bright red, but that seems to be a result of the steroids. My face doesn't feel hot or sweaty (except when I have my regular every-45-minutes hot flash), I just look like a beet.

During the infusion, which took an hour and a half (though the whole visit takes about six hours, because you have to have bloodwork first and then wait for results and then wait for the chemo drugs to come up from the pharmacy), I stuck my fingers in ice packs to try to prevent the drug from reaching my nails. Melting fingernails is one side effect of Docetaxel. I don't think the ice packs were very effective -- they melted too quickly and the cold didn't transmit through the provided cover very well.

My blood tests were good except for that alkaline phosphatase bone-mets indicator, which still hovers around a high level. But the doctor insists that she sees this often during chemo and doesn't seem worried. In any case, I had no bad liver-enzyme levels, which is the most important thing, I think. If we can just keep the cancer out of my vital organs, I'll live a while longer.

I told the oncologist how much discomfort I have in my left armpit and left breast -- in fact, without getting too graphic and personal, the skin sometimes resembles photos I've seen of inflammatory breast cancer, which is a bad thing. She took a look and said she thinks it's just the after-effects of the surgery, primarily nerve damage. But she mumbled something that I took to mean, "We're in the middle of treating you, so we'll worry about what's happening when we're done; either the chemo and radiation will help or they won't."

I didn't feel too bad last night -- not much nausea and no bad taste in my mouth -- and I feel pretty good this morning. So now I'm awaiting whatever is to come, muscle aches being the most common side effect, perhaps by Friday. I told my oncologist that I want to attend the National Magazine Awards gala on June 5, just three days after my next injection, and she suggested postponing the treatment to the following week without my even asking. I have done so, but I'm going to carefully monitor how I feel in the next three days. If it's not too bad, then maybe I'll go back to the regular schedule -- don't want to compromise my treatment if it's not necessary. Of course, the second round may be worse than the first, as effects can be cumulative.

Pollyanna moments:

Although I'm a little embarrassed at accepting friends' offers to be my "chemo buddies," because I could certainly get myself to the hospital and back in a cab or even on public transit, and I could certainly sit in a chair for six hours and get an injection accompanied by a book or my iPod, I must admit I still feel so much better with a friend there. Even though the Medical Day Care department at my hospital and its staff are completely familiar to me now, it's easy to get depressed and frightened in that setting if you have nothing to distract you. Somehow the treatment brings home in a concrete way what's really going on, thoughts you can often ignore when you're going about your business at home. My chatty friends do the trick superbly, and I'm so grateful for their company. I don't think it can be very cheering for them to be there, either, and I think it's brave of them to join me.

Calm before storm

Am I running out of things to say? I'd rather say nothing than give a daily report that simply says the same thing I said the day before. But no news is good news, healthwise; this past week has been my "good week," when my stomach feels relatively normal and my ability to concentrate is much improved. Mostly I'm just tired and constantly wanting to nap. At least I can nap. And though my back continues to hurt quite a lot, I can get around fairly well, and sit in different kinds of seats without too much difficulty.

But on Tuesday I go back for round four of chemotherapy, this time taking Docetaxel for the first time, so I don't know what to expect. And worse, I have to take double the amount of steroids I was taking with the earlier injections (because I mistakenly took only half the dose then and got away with it). Apparently a minority of patients have a sudden bad reaction to Docetaxel, so the steroids are imperative.

Most of the past week has been taken up with concern over my parents since my dad entered a neurobehavioural unit at a hospital in Kitchener for a temporary stay. He has Lewy Body Dementia, and it's heartbreaking for our family, most of all for my mother.

Pollyanna moment: I got to see my 11-year-old niece sing in the only remaining Kodaly Festival concert in Canada. With nearly 500 other young voices in Kitchener's Centre in the Square, it was lovely to hear. And I could sit in the seat without even a back support!

Jane's Walks

One thing I had to turn down this year because of my illness was the opportunity to again co-lead a "Jane's Walk" of my neighbourhood as I did for the walk's first two years. But here's my plug for Jane's Walks, and I urge you to take in one or more this weekend.

Inspired by urban thinker Jane Jacobs, who died in 2006, Jane's Walks are a series of free walking tours of neighbourhoods, led by people who know the area well, in keeping with Jacobs's belief that healthy cities are about getting feet and eyes on the street. Begun in Jacobs's adopted home of Toronto by a band of Jane acolytes armed with little more than a website and email, they have this year branched out to 24 Canadian cities, and are now organized by former CBC journalist Jane Farrow through the offices of the Centre for City Ecology. They're planning to expand the idea worldwide; in fact, a Jane's Walk is happening today in Mumbai, India.

Today's Globe and Mail features an article on the walk in my neighbourhood, "Greenwood-Coxwell: A Neighbourhood of Many Names" (I call it the Gerrard India Bazaar or Little India), which will be led by my friends and neighbours Diane Dyson, manager of planning and research for Woodgreen Community Services (check out her great blog, Building Strong Communities), and Doug Fyfe, a social historian for Toronto city museums. The walk takes place on Sunday (May 3) at 3 p.m. and I guarantee it will be fascinating (plus you can linger afterward for dinner in one of the many great South Asian restaurants on Gerrard Street).

Or check out one of the other walks in your city. If you're in Toronto, you can take in one of over 90 walks that will be offered over the weekend, from "Art Deco Skyscrapers of Downtown Toronto" to "Toronto’s Lost Railway Heritage" to "The Meeting Place: First Nations on Queen" to one called "Places to Bonk on Your Lunch Hour." They're a great way to get to know your city--or even your own neighbourhood. Last year our walk was held in the pouring rain, and Diane and I expected no one to show up. But we had about 30 hardy participants, and it was great fun. This year the weather in Toronto, at least, looks like it will cooperate. And if I'm feeling well, I may well tag along with my wheelchair on Sunday.