The Clothesline Saga

Cynthia Anne Brouse 1957 - 2010

2010-06-24T23:48:00.003-04:00

Canadian magazine readers who value the beauty and strength of accurate facts, immaculate punctuation and elegant, precise prose have lost a best friend. Cynthia Brouse, the country’s finest fact-checker, copy editor and teacher of those same skills died on June 19, 2010 at age 52.

For 30 years, Cynthia’s diligent and spirited behind-the-scenes labour has burnished articles and news features in all of Canada’s top-rung publications. She worked as a copy editor, researcher and writer for Maclean’s, Chatelaine, Toronto Life and Saturday Night (where she was also managing editor for two years), Report on Business Magazine, Canadian Business, and the Globe and Mail. A natural teacher, she trained scores of current magazine editorial staff in the best procedures for fact-checking contentious quotes, assessing the credibility of sources and avoiding lawsuits they could ill afford. Her book, After the Fact, A Guide to Fact-Checking for Magazines and Other Media, is the go-to manual for both magazine interns and corporate communicators nationally. In 2009, she received the National Magazine Awards’ most prestigious individual honour, its Foundation Award for Outstanding Achievement. She was the longtime co-ordinator of the Magazine Publishing Certificate Program in Ryerson University’s G. Raymond Chang School of Continuing Education, and for five years a member of the communications faculty at Toronto’s George Brown College. Although her ability to save the world from misplaced modifiers was prodigious, she strived to never make any writer feel diminished. She approached her calling with the same counsel she gave every new fact-checker: "Don’t be snooty. If they didn’t make mistakes, you wouldn’t have a job."

In addition to excelling as an editor, researcher and instructor, Cynthia was also an accomplished writer of creative non-fiction and personal journalism. Her painstakingly well-researched pieces earned her two National Magazine Awards. The blog entries she wrote after her breast cancer reoccurred in late 2008 were so rich with frank, funny and jargon-free details about being a seriously ill patient that both intimate friends and complete strangers admitted to her, with no small bewilderment, that they "enjoyed" the read.

Just as she always had your back if you were a freelance writer without the time or ability to hand in pristine copy, Cynthia was a stalwart friend and often the connecting thread between unalike communities in her wide and diverse circle of acquaintances. She publicly supported gay rights before many of her contemporaries understood how important it was for straight people to do so. She startled many a hip Torontonian with her rhapsodies on the glories of Alberta, and Edmonton in particular.

She had a lovely singing voice and adored John Lennon and Max Webster, punk rock, and folk music, symphonic and popular choirs in equal measures. Although she never achieved her desire to become a mother, she was a cherished friend and guide to her nephews and niece, and a vibrant, much-admired significant other to her friends’ offspring.

A native of Massey, Ont., Cynthia was a small-town girl deeply enamoured of northern Ontario and rural Canada. But she was also a booster of micro communities in the city, such as she found and enriched during her 14 years as a resident of Toronto’s Little India district. A recording of Cynthia describing one of her ’hood’s favourite retail sections can still be heard if you press a button on a certain north-side corner of Gerrard Street.

She leaves her parents, Jean and Terry Brouse, her siblings Mark, Paul and Lori, their spouses Susan Fullerton, Mirella Diodati and Robert Brazeau, and her beloved nephews and niece, Terence and Nicholas Brouse, Hannah and William Lamoureux, plus scores of dear friends and hundreds of colleagues. All of them will miss her chatty postcards, book recommendations and great meals, her incisive observations and uncensored anecdotes, her gifts of tolerance and kindness, and her vast capacity to love us all.

A private family service and interment will take place in Massey, Ontario. As well, a memorial service will be held in Toronto for family and friends in September.

Donations in Cynthia’s name should go to the building fund of the Massey Area Museum, 160 Sable St., Massey, Ont., POP 1PO.

Postscript

2010-06-20T22:23:00.001-04:00

Cynthia passed away peacefully at St. Michael's hospital in Toronto on Saturday June 19th, 2010 at 1:50 am. At her side were her mother, sister and brothers.

2010-05-22T18:13:00.001-04:00

The optimist's version

2010-05-18T14:27:00.003-04:00

Dr. Haq is, as usual, just a little more optimistic than other doctors, so I wasn't surprised when she offered a slightly different take on Dr. Cuzamano. But in the end she didn't really recommend anything other than consulting another radiation doctor, and checking out the palliative care ward. I'm uncertain where I'll end up -- depends on whether I seem to be ready for the ward or not -- quite arbitrary. One thing I was grateful to learn, if sad, is something that's puzzled me for a while, especially when I heard how quickly Paul Quarrington died. Apparently, I could feel like a hundred bucks one day and die the next. This is helpful to know. My brothers and sister have stepped up to the plate and have been slowly taking over bill-paying, etc. Feels weird.

My brain is definitely not working properly, and I'll welcome people pointing this out to my family. I'm hoping my writing ability is strong, but retelling stories orally has become a ridiculous chore. I was warned about this by the radiation oncologist, so maybe it's temporary. But I'm quite confused when I try to sort out my day each morning when I wake up. Except I don't really recognize it till later in the day.

I will appreciate people telling my family if I start writing gobbledegook on this blog.

Pollyanna moment:
Sunday afternoon was wonderful. We all assembled in the sunshine in Mark's backyard and ate the most amazing cupcakes that were ordered specially for us from a cupcakery in the Beaches called, I think, Life is Sweet

The pessimist's version

2010-05-13T18:49:00.004-04:00

Here's the text of an email I sent out last night to almost 100 people:

Hello, there:

First of all, let me explain and apologize for this mass email. Since I returned from my vacation in B.C., I've received dozens of emails, most of which I haven't responded to.

You may or may not know that I'm back in St. Michael's Hospital, again unable to walk, and heading for the palliative care ward. I'm sorry to give you bad news by email, but I feel I have to do it this way to save time, a precious commodity just now.

I've had slews of scans and tests over the past few days, and the news is dire: I probably have about three months to live. The only doctor I haven't consulted is "Dr. Noguff," who was awfully optimistic about a month ago -- but she's out of town.

Anyway, it's a lot to absorb. I am starting to feel overwhelmed, and also like it's time to circle the wagons. My choices about who I want to see in my last days are painful to make, but certainly my family comes first. (Especially as my sister's ex-husband, father of her young son and daughter, died suddenly last week.}

Some of you have heard this news already, and some of you haven't, and to be honest, I can't recall which is which. If you'd like to email back, I probably won't get a chance to reply. But I love knowing you're thinking of me, and of course I think of you often. And I'm sorry if you think our relationship merits more (or less) than this email -- it does, and we'll still be in touch. I'm just so worried that one of the 75+ people who've sent emails in the past month will feel out of the loop, and I'd like to respond while I still have my wits about me, and my ability to type. I'm just one of those people who can't leave an email unanswered!

Besides being unable to walk, I'm sleeping more now, and my hands are getting shaky, so typing is slow. I lose control of my bowels easily. Other than that I'm comfortable except for spine pain, which is mostly controlled by meds. The most important thing is feeling safe from falls.

I wouldn't say my brain is clear and focused, but it doesn't seem much worse than those of my middle-aged friends! Still, everything is about to fall apart, and whether I need or want everybody to witness that is doubtful.

However, I like to think I'll be lucky and see/talk to/hear from all of you again (on terra firma!). But because that's becoming less likely as the weeks pass, I will take a page from my cousin Terri-Lee, who would say to her father, my uncle Sheldon, as he lay dying: "I'll see you in my dreams!"

Matt and Joan D. and I have been following the World War II poster adage "Keep Calm and Carry On." Then Joan changed it to "Keep Calm and Eat Cupcakes." I would like to add: "Keep at least a few meters away from Cynthia after she's eaten cupcakes."

See you in my dreams! (And bring cupcakes! Angel food!)

Love, and eternal gratitude,

Cynthia

Tomorrow I will let you in on Dr. Lee's -- surprise! surprise! -- very, very marginally more optimistic take. Who knew...

Pollyanna moments:

Lovely, warm visit with Robin last night, with the gift of poetry.
Lovely, busy visit with C&M today; they gave my sore arm a break and Googled some medical info I needed.
Lovely, helpful visit with a palliative counsellor today.
My brothers continue to trudge in to see me, dragging things I need.
My sister and her kids are coming to visit on the weekend.

Dignity

2010-05-12T18:28:00.003-04:00

Picture this: you're near the front of the first-class cabin of an Air Canada flight, and you need to use the washroom. You stand up and immediately lose control of your bowels.

'Nuff said.

When I was singing with Rainbow Voices, now sadly a defunct choir, I was happy to learn and sing the music from Rent, particularly the round-style song about AIDS called "Will I?" (you can watch a short clip of it here.) The movie is a bit of a mishmash, but I've always found this part moving. Anyway, the lyrics are very simple:

Will I lose my dignity?
Will someone care?
Will I wake tomorrow from this nightmare?

I can now say with conviction that I have lost my dignity, and I won't wake tomorrow from this nightmare. But someone does care.

Alas, alack

2010-05-11T15:29:00.002-04:00

I've been offline for four days and now seem to have my internet up in St. Michael's Hospital, where I've also been for four days.

On Friday night I found I was right back where I was in January -- no strength in my legs, falling every time I tried to stand up. My limbs are covered in huge bruises and scrapes. My friend Marie was with me the last couple of times I fell, with such enormous crashes I nearly scared us both to death, and she expertly arranged an ambulance to the location I wanted, while I sat cross-legged on the hardwood floor. More descending the house's front steps dramatically strapped into a chair, no doubt scaring the neighbours. I cried as I said goodbye to my house, knowing I might not see it again (I said that last time). But along with the sadness, I felt an enormous sense of relief, or at least of safety. The fear of falling has become very strong. However, I'm well aware that being ensconced in a safe bed, without much exercise or even the ability to roll over, is what will probably lead to my death.

I spent about six hours in Emerg -- it was quiet and comfortable, oddly, and my brothers and their wives showed up. I was admitted at 1 a.m.; they immediately did an MRI and I was tucked into bed by 2:30.

Since then I've been having MRI and CT scans, or waiting to have them, while trying to cancel various appointments without benefit of a working computer or papers that got left at home. Meanwhile coping with the usual dilemma: how many visitors is too many and how do I manage that impulse folks have to spend time with me, as well as my own impulse to be distracted by friends and have people around to fetch things for me. I say I want to be around folks who can be quiet and let me be quiet, too -- what the bad novels call companionable silence -- but today Diane pointed out that she tries to engineer such an atmosphere, but I won't shut up! And she's right. I love to talk, but more than that I feel so guilty when I don't engage -- I need to fill the void. It's one reason I never married. I feel like I'm being watched if another person is in the room, and I feel a huge burden to socially engage.

Anyway, I've let it be known that I don't want more than two short visits a day by non-family members, and people are mostly complying, but even with the wiki calendar, I feel like I spend a good chunk of the day scheduling people, despite help from friends who try to head them off at the pass. Oh, what a glorious problem to have -- too many wonderful pals!

Pollyanna moments:

My brother Paul made me whole-wheat scones and stocked my fridge when I returned from B.C. He also took us to the airport. And last night he brought me the most hilarious tape of his youngest son, made when he was three or four, in which he very loudly and enthusiastically retells the Easter story. It's good enough for America's Home something-or-other, especially the parts about Joey and his dirty sandals.
My brother Mark, along with Marie C., took me on a tour of a local retirement residence, which I was quite excited about, until my legs collapsed the very next day. Then he did my laundry, or he and his wife did.
Mark and Daryl/Diane cut bouquets of lilacs from my precious tree, and my room (a private one!) smells divine. It looks pretty certain I won't see the tree bloom again.

Gluttony and hot tubs

2010-05-02T17:37:00.012-04:00

I haven't blogged since we began our trip to B.C., and in two days we'll be home again. Not knowing where to start recounting, I'll probably just write snippets as I think about them. The themes of the journey have been food, food and more food, and hot tubs, a relatively new concept for me. Here's a photo of me hot-tubbing in the Empress Hotel in Victoria.

But here on Gabriola Island, we are staying at a rustic resort called The Haven. There's an outdoor hot tub at the edge of the Strait of Georgia (apparently now called the Salish Sea), overlooking mountains and cedars and hemlocks and lapping waves. It's deadly cold getting in there in the evening (not to mention tricky with the wheelchair), but I find the hot water really relaxing. I know, who doesn't. But I've led a sheltered life when it comes to recreational equipment and lifestyle devices and spa experiences -- I've never even had a dishwasher or an electric can opener, and I'm not sure what a Jacuzzi is. I had my second pedicure this trip and thought I was being pretty decadent.

The Haven is also a kind of New Age retreat centre, featuring in the dining room the funniest portrait of a Dana-Carvey-like church lady who turns out to have been the resident psychic, a proponent of "spiritism"; the plaque beside the fur-collared, washed-and-set woman in her 70s suggests that "spiritism" refers not just to her paranormal version of Christianity but to her homemade wine.

As for the other theme, we've spared no expense and eaten at some fine restaurants, some of which weren't so fine, and some pedestrian restaurants that were not half bad (I recommend the clam chowder at the Silva Bay Resort and Marina on Gabriola, which is attached to a wooden-boat-building school of some renown). The outstanding choice, apart from my godmother's fennel-potato soup and Waldorf salad, has definitely been Market at the rather fabulous Shangri-La Hotel, where we stayed in Vancouver (and will stay again tomorrow night). The food and service are outstanding.

While in Victoria, of course, we had to have high tea at the Empress, where we also lodged. I've had better food at a high tea, but the experience was worth it because it's the Empress and the room and service are lovely and legendary.

Now we are on Gabriola, a peaceful, rustic, friendly place, visiting friends and relaxing; my bedroom window overlooks the Strait and today we are just vegging. Our friends took us to their favourite lookout spot last night, overlooking the lighthouse. I can see why people retire here, though it may turn out to be a pipe dream for some; I notice there's an awful lot of property for sale. The population of the island seems to have an average age of about 55 or more. All the men and women look the same: grey beards and ball caps on the men, more colourful middle-aged outfits on the women, all seemingly fit as fiddles, walking to and from the ferry.

I've been very active on this trip (for me), and I'm pleased I'm still hanging in there. I had one fall in the bathroom of the Empress and banged up my arm pretty badly, but my noggin has been spared so far.

One of the items on my bucket list was to eat a Nanaimo bar in Nanaimo, so here's the evidence of that.

Finally, the photo up top should provide a sense of the peace I feel when I'm near water. It and the lighthouse photo were taken by my friend Jan's husband, Tony Bridge, who is a fine amateur photographer with some very nice cameras.

Soon I'll tell you all about my Hawaiian Lomi Lomi massage. Maybe.

We're off -- almost

2010-04-23T10:39:00.002-04:00

It looks like this trip to B.C. is really going to happen. My mom and I are hip-deep in clothes and suitcases and arguing over what to leave out. We depart in two days.

One reason I'm feeling better than I did in my second last post is that the doctor did permit me to start taking steroids again. My energy level is better, and my pain level is much reduced. My legs and hip remain semi-paralyzed, and I've had one bad fall, where everything just gave out at once and I went straight down to the floor despite having the walker in my grip, banging my head on a shelf as I went. Getting around is onerous, but not worse than it was. My voice and throat continue to plague me, but that's also status quo.

So...off to Vancouver for two days, then Victoria for two days, then four days on Gabriola Island. Visits with friends, spa treatments, swanky hotels, first-class plane seats. I hope it will be worth the day-in, day-out planning I've been doing for the past month. I think it will. I'm looking forward to it immensely.

Meanwhile, I am harbouring a fear that my hair loss is permanent. The stubble that remained after I had it shaved is staying put, and I don't see any regrowth. Is it possible I'll never have a head of hair again? Something to add to the list of things I'll never do or have again -- riding my bicycle, taking a streetcar, a bath in my claw-foot tub.

I'm not getting out very much in this nice weather, but my kitchen patio allows me to see how fast my garden is progressing--as usual, wild and unruly but beautiful. In my front yard, the lilac bush has lots of buds, and I'm afraid the blooms will appear while I am gone. Last year I prayed I'd still be alive to see my lilac bush one more time. And here I am -- going to B.C.!

Walking the Jane way

2010-04-21T18:46:00.004-04:00

As last year, I'm dropping a plug for the May 1 and 2 Jane's Walks, which commemorate urban thinker and Toronto resident Jane Jacobs. There are a gazillion walks now, and in just four years, they've spread from their birthplace of Toronto to a multitude of cities across North America as well as in Ireland, Uruguay, India and Spain.

I'd especially like to tout walks that are being led by friends of mine in Toronto and in Kitchener. Diane Dyson is doing two in Toronto that resemble the one she and I used to lead in Little India, but, unlike me, Diane has considerable research-based expertise in what makes a neighbourhood work because of her many years as an activist and working with the United Way and Woodgreen Community Services. (See link to her blog below.) She's leading a walk called "Neighbourhoods 101: Theories of Place-based Community Organization," and, with our neighbour, affable and wise historian Doug Fyfe, she's co-leading Greenwood-Coxwell: Belonging Community. Either walk will tell you why I love where I live.

In Kitchener, you can find out from my friend Rosemary Kelly what it's like to be a single woman who lives in the downtown core of the city without a car -- yes, it can be done -- during her walk "Living in Downtown Kitchener."

And also in Kitchener, another old friend, Jim Bindernagel, is co-leading two walks on the Iron Horse Trail, where the old train tracks have given way to walking paths.

Or choose from many, many other walks that illustrate Jane Jacobs's contention:

No one can find what will work for our cities by looking at … suburban garden cities, manipulating scale models, or inventing dream cities. You’ve got to get out and walk.”
-Downtown is for People, 1957.

Good news and bad

2010-04-11T17:56:00.006-04:00

Everybody around me is excited that the results of my brain MRI were very promising -- the large-ish tumour in the lining of my brain has shrunk considerably, and the smaller one, too. I saw a personable Australian brain radiologist whom I'd never seen before, and he said he was encouraged. Unlike any other doctor I've consulted, he offered to show me the actual scan, and it was good to see with my own eyes the comparison of the last scan with this one. He says he has every reason to hope that brain lesions will remain at bay indefinitely, although no one can say for sure. He even told me that some of my hearing could return in a few months. All of that was gratifying.

Meanwhile, I feel pretty crappy. Since I gradually decreased and then stopped the steroids, my back pain has returned, my voracious appetite has disappeared (maybe a good thing, but I'm less inclined to eat through the vocal cord resistance), and I have less energy. I'm back on painkillers and it's hard to find a position or chair to sit or lie on that doesn't hurt. The vise-like grip of my ribs around my middle is debilitating. As soon as I do get a little comfortable, I go straight to sleep. Walking is tough. My skin is dry and shedding and itchy. I continue to feel an inner tremor, which is especially annoying in my hands. I find it hard to do up a necklace, for example. For now, the sensation is fairly subtle. This is not even to mention the vocal cord problems, which probably comprise a third of my discomfort.

But I was putting up with all of these things pretty well as long as I had no back pain. As soon as the pain started again, I began to feel overwhelmed. I'm even shying away from touring my neighbourhood in the wheelchair because the bumpy sidewalks jar my spine. I should be rejoicing, but instead I'm whining.

I wonder if the doctor would let me go back on the steroids just for my vacation?

Through the palliative care people, I get free complementary therapies; twice a woman has come to my house to do a combination of reflexology and Reiki therapy. The latter is a kind of therapeutic touch treatment. The website Reiki.org says: "A treatment feels like a wonderful glowing radiance that flows through and around you." I'd had one before and it was kind of nice. But both times this woman has come here, all I remember is her starting with my feet and then gently waking me up to say she was finished. I slept like a log through both treatments. She could have robbed me blind and I would never have known. (I doubt she would.) I don't know if one's body responds to the treatment if one is not awake.

Some sad but not unexpected news: I've mentioned a few times the blog of Tasha Westerman, who started blogging about her breast cancer and whose husband had a brain tumour, while her best friend had leukemia. I wrote about her in my Best Health article about writing for health, and it was her blog that inspired me to give it a try. Tasha's husband, Ryan, died a few days ago. Reading Tasha's blog and Ryan's has been painful, but inspiring, not least because they have a small son. My thoughts go out to them.

But I've been lucky enough to have had plenty of Pollyanna moments in the past couple of weeks:

As usual, it was great to have Matt here. We did a lot of sitting around and watching movies and being what I think my young friend My Anh calls "surf clams" or something similar: lounging side by side with our laptops and even playing Lexulous in real time. We also had some outings: On Easter Sunday, Matt's friend Ron H. drove us up to Creemore and then to Collingwood to enjoy the sunshine, shop a little and bask in the breeze off Georgian Bay. We had lunch at Chez Michel in Creemore, which I recommend; good French food, nice room, attentive service. (Unfortunately, on the way home I developed chills and fever, and I must have slept 14 hours after I called the doctor, took some Tylenol and collapsed on the couch. A lot of sleep before and after outings seems essential now.)
Jocelyn treated Matt and me to a lovely brunch at her house between transporting us to the hospital for my MRI and helping us with various errands.
Matt and Jocelyn managed to get me into my own backyard to enjoy the sunshine, which was a treat. The most comfortable place for me to sit is on a big armchair with a lot of cushions in my living room, which is nearly windowless and rather dim most of the time. So I don't always get to see the beautiful days, like this one. And because the steps down to my yard have no railings, I need some strong people to get me down there without my panicking like a six-year-old.
Jay and Dré took me to the Owen Pallett concert at the Queen Elizabeth Theatre; I had heard him at the Calgary Music Festival a few years ago, and was intrigued. The concert provoked much discussion about tape delays and electronica and so forth. To me, it's somebody doing something fun with a fiddle, which I always enjoy. Hadn't been to a concert in a very long time, and it was preceded by a great dinner at Leslie Jones in Leslieville, complete with a splendid view of Queen East's eclectic population, assorted body shops and assisted housing -- and nonstop Bob Dylan in concert on the sound system. I got through the whole night pretty well.
Yesterday we celebrated the 50th birthday of one of my brothers, and although I couldn't finish my plate, the dinner was yummy. Especially my mom's homemade birthday cake with boiled brown sugar icing. It was fun, even though I felt a little yucky. I think my brother was pleased and touched by the day.
My former tenant and friend Isabella has been staying with me, and she's an attentive nurse and housekeeper. And she leaves me alone to sleep and do the stuff that needs doing, whether it's filling out yet more insurance forms or trying to keep up with emails or just playing Lexulous. Or blogging.

Taxes done!

2010-03-31T05:20:00.003-04:00

I seem to be waking at 5 a.m. every day drowning in phlegm, so I guess it's as good a blogging time as any. Several people responded to my request to share their thoughts and feelings about how best to approach a terminally ill friend or relative, some in the comments section and some privately. The responses were thoughtful and heartfelt and honest, and included some from people who haven't been in touch but have clearly been reading my blog. That's one of the weird things about blogging: people feel they have been talking to you, but you haven't been talking to them. I appreciate the candid comments a great deal -- thank you.

One friend talked about the "goodbye" factor -- people want to visit a sick person to say goodbye. She compared this to her own experience of sending her son off to Afghanistan; should she have a gathering to mark his departure, and if so, would people be coming to say goodbye to him -- not see-you-later goodbye, but maybe-you-won't-come-back goodbye?

Someone else said that my desire to turn away visitors and be on my own for a while made her feel less guilty about not having spent enough time, in her mind, with her mother while she was dying. As I mentioned, the compulsion to be with the dying person 24/7 is natural, and often necessary, but ignores the fact that an adult can be alone with themselves for at least some part of the day, and may want to, depending on the person and the extent of the illness.

I have got a ton of things done in the past 10 days while my mother cleaned and cooked and waited on me like a butler. The taxes are finished (I'm getting a refund!), the trip out west is almost fully booked, a bunch of paperwork and phone calls have been completed, but I still have much estate planning to do, including visits with my lawyer and my financial advisor and my family. Dying is a lot of work.

Meanwhile, my friend Hugh sent me this article that made me hopeful about how much time I have left; clearly the doctor is just guessing about my prognosis, and one simply never knows. I have been eating everything under the sun lately, theorizing that at this stage eating healthy is a waste of my time and that gorging on chocolate and sour cream and butter and all manner of prepared convenience foods is satisfying to my soul, a key factor in sustaining my mood. But another part of me says I could extend my life if I were more rigorous about my diet. There are researchers who swear that eating dairy and sugar simply feeds cancer, but I can never bring myself to trust them. Depriving myself at this stage seems crazy. But I think drinking milk, for example, is exacerbating this phlegm problem, which seems connected to the paralyzed vocal cord and my difficulty swallowing. I'm really hoping that I can finally sustain the required treatment pretty soon; five months of this hoarse voice and choking fits has been hell.

How do I feel? Walking is difficult; I had two semi-falls in the past two days, partly because I trip over my semi-paralyzed feet quite easily. My forehead is peeling from the skin burn that seems to have arisen because I went out in a convertible with the top down on a sunny day without sunscreen right after having my head radiated. My face is still red and fat from steroids (and the brownies and apple turnovers), and my scalp is completely shaved with a little stubble. Very stylish. I'm still deaf in one ear, and talking is a struggle. In a crowded place with a lot of ambient noise, especially if someone is pushing my wheelchair and I'm facing away from them, I feel like I'm in an isolation bubble -- can't hear, can't make myself heard. When I stand up, I feel like my legs are made of ice. It's kind of what I imagine it would feel like if one had hypothermia. What makes it worse is the vertigo: the feeling that I'm swaying and on some really powerful sedative.

But I'm still managing with the walker and still getting down to the basement for showers and still getting in and out of the house, and that's what matters for now.

Pollyanna moments:

Some amazing tropical flowers from Scott in a big planter, and pussy willows and tulips and orchids from others.
Diane took mom and me shopping at Winners and I finally bought some pants that kind of fit me now that I've lost weight (except my belly is so distended on top of my vanishing legs that nothing really fits properly). Then mom and I managed to get me up to my bedroom (not without a fall that bruised my hip nicely), where I tried on tons of clothes that I haven't been able to get done up for years. It's like acquiring a whole new wardrobe. I always called them my breast cancer recurrence clothes, and I'm determined to go out looking well-dressed.
Have booked Mom, Joan and me into some swanky hotels in Vancouver, Victoria and Gabriola Island, and plan to book our flights today. Please, please let me feel well enough to go on April 25.
I can hear birds outside my window.
Matt arrives from Red Deer tomorrow!

Retreat

2010-03-22T14:19:00.004-04:00

In lots of ways, my many visitors have been what's sustained me in the past while -- they make me feel engaged with the world, cared for, and distracted from my sadness. However, I'm starting to feel as though I have no time to myself, and I have a lot to do -- my taxes, estate planning, the usual sickness bureaucracy, stuff I want to write down and communicate to my family. And just time to read a book or jot down some stories. I'm still strong enough to run my own life, and like everyone's, it takes a lot of running.

So for the next couple of weeks, while my mom and then Matt and then Isabella are staying with me, I'm going to try to keep visitors and callers to a minimum. I am so lucky to have so many friends and relatives who care to drop by and phone, and I specifically reached out for their aid, but...there you go. The recent news I received needs to be digested and planned for.

(Plus, I'm planning a trip to B.C.! I'm hopeful that in a month I won't feel worse than I do now. It will be luxury all the way, and I'm having so much fun spending the money. Shangri-La Hotel in Vancouver! Spa treatments! First-class plane tickets!)

It's been interesting to contemplate the nature of visits to a terminally ill person. I'm keenly aware that when my friend Adele was sick, and when other friends were dying of cancer, I was pretty convinced that they could never be left alone with their thoughts, or with their disabilities, and that I had to be there with them as much as I could. I realize now that I may have been imposing, that people can be alone with their circumstances sometimes, that my ego was probably bound up in my visits and calls. Of course, it depends on your relationship with the sick person; I won't turn my immediate family away, ever.

A cousin of mine died of lung cancer a couple of years ago; he was just a year older than I, and when we were little we lived next door to one another and played together a lot. But we weren't close through our school years, and I don't think he even liked me very much. Much later, we saw one another at a family funeral and had a nice talk. When he got sick, I called him and then visited him in a hospice. At one point, I said to him, "This is a little weird, I guess, to have people suddenly get in touch with you when you're sick whom you haven't seen in decades. Why do we do this?" I had had my first bout of cancer treatment by then, and I knew a little about people's reactions.

He kindly said that he knew people cared and he accepted their need to get in touch. Of course, when you're one of 26 cousins who all like each other but were never close, you want to acknowledge the family ties and honour your aunts and uncles and parents and grandparents and somehow pay tribute to childhood memories and relationships. That's one motivation.

With friends, I know the call or the visit makes one feel useful, and helps one deal with the uncomfortable subjects of illness and dying. There's a push-pull impulse -- you want to visit the sick person, you'd rather not, the visits are morbid and fascinating, or boring and helpful. There's such a powerful combination of ways in which the visit is good for the patient and good for the visitor -- or the opposite.

In my case, I really do need help a lot, and visitors have all been put to work fetching things for me. But now I need to hunker down, and I'm lucky to have my mom staying with me 24/7.

I also know about illness fatigue, and that after a friend or family member dies, one often feels a great sense of relief. I understand that perfectly; after Adele died I felt energized for a while because I no longer had to worry about her, or about whether I was helping her too little or too much.

I would love to read some comments from readers of this blog about the delicate dance around visits and calls to a sick friend or relative. What kinds of emotions and practicalities come up for you?

Shit just happens Part II

2010-03-20T11:20:00.004-04:00

So I stayed up half the night blogging and reading many of the thoughtful comments that were appended to Dana Jennings's blog post about the uselessness of the words people employ to talk to and about people with cancer. Almost everyone agreed with him, but many were big-hearted enough to acknowledge how difficult it is to know what to say in this situation, and that the foot-in-mouth syndrome springs from a real need to be kind and helpful. I can't stress this enough, perhaps because I have been guilty, and continue to be guilty, of saying some of the same things that people say to me when I talk to people with cancer, things that aren't helpful. But who gets training in how to deal with this? We're all trying to do our best, both ill people and their friends and family. Some people can't deal with it at all and fall off the face of the earth when you most need them; I'm sure the lack of language to address the issue is a part of that.

I will copy here some of the comments people wrote in response to Jennings that I could empathize with:

Survivor never much appealed to me as a descriptor of my medical condition. If I knew I was going to survive, then cancer would not be such a scary ordeal.
When I refer to myself, and when I write about other young adults with cancer, I call us patients. In all of its clinical lackluster, it best fits the role I play in the cancer community and the role cancer plays in my life.
I know I’m brave (though I have no other choice to be). I know I fight (with my doctors and the system more so than the disease). I know I have a medical ID number, make appointments, wrestle with insurance, wait for good or bad news, white knuckle my way through pain and live with a lot of gratitude for the parts of my body that are still healthy. That is the work of a patient. When I talk about my cancer life, I call myself a patient. The rest of the time, I’m Kairol.
http://everythingchangesbook.com/

I don’t mind the word survivor, or even victim (if used in past tense); they’re used for, say, accidents or heart attacks too. But the battle imagery does seem to be unique to cancer and I disliked it when I was going through the cancer, and to this day. I can’t think of any time in my life when I had to be so passive. How on earth that made me a fighter I will never understand. I accepted and I cried and I endured and I did things to help myself such as nestling in the arms of support groups, and I came out the other side…. a survivor. But I didn’t fight it anymore than a heart attack victim :) fights his or her heart dysfunction.
— Debra Anderson

As for bravery? My standard response is “Don’t mistake lack of options for bravery.”
Bless you Dana,
— mary

I do agree that it is better to say nothing, or very little, rather than say the wrong thing. I had a friend avoid me because he didn’t know what to say. I called him on it, and he blurted out, “I’m worried about you, I’m scared you’ll die, I want you to get better.” I appreciated that MUCH more than the people who told me I’d make it because I was a strong fighter. I’ve wanted many times to ask that person, “Okay, if I die does that mean I was weak?” But there is this strange self-imposed etiquette when you have cancer and someone says something stupid to you. You can’t upset them, you have to comfort them.
Just once I’d like to read an obit that said, “After a sensible acceptance of her cancer, Jane Doe passed away at home under hospice care.”
— Alice Payne

People have been telling me lately that I'm their hero, that I'm so brave. I remember saying that to my friend Adele in the 10 months between her cancer diagnosis and her death. She replied that she had no choices, so she could hardly be brave. But some people do display more equanimity during an illness than others. I think it's important to distinguish how people live and how they die. You're alive until you're dead, and if somebody wants to admire something about the way I live now, that's fine. But to ascribe to me a strength that will help me "beat" cancer; or to think that I have any happy choices in anything that's happening to me; or to describe me as being enjoined in some kind of war that I can win or lose based on my character -- it's all silly. How I live each day is all that matters -- it's all that ever matters for all of us. And when friends and family look at me and say, "I couldn't do what you're doing," well, guess what, if it happens to you, you won't have a choice but to "do it." And you'll probably continue to be much the same person you were before, except that you'll have to cope with a sometimes deadening passivity.

I'm fortunate to have friends and family who listen, offer specific help, make themselves available and don't mind my bossing them around to reach things for me, make my bed, fold laundry. They're free with hugs and laughter, and that keeps me going.

Pollyanna moments:

I had a marvellous day yesterday after a slow and difficult start (hard to get out of bed sometimes). Two old university friends took me out for Indian food in the wheelchair, and then we got in a BMW convertible and cruised out to the Scarborough Bluffs with the top down in the wonderful 20 C weather, exploring some lovely neighbourhoods and looking at misty Lake Ontario. It was glorious. In the evening Helen helped me go out to the spring concert of the Metropolitan Community Church (there's another performance tonight), in which my friend Karen H. was singing -- she and I were choir buddies in Rainbow Voices when it was still running -- and there were some great guest performers including the wonderful gospel/blues singer Jackie Richardson. I had a great time.
My sister and her kids visited me for two days and we went through some old keepsakes: my old Girl Guide uniform, "mod" neck chokers I wore in the hippie days, the white confirmation dress my mother sewed for me, the back brace I wore when I was 9, the first blouse I sewed in Home Economics class, stuff that I guess will get tossed when I'm gone, though maybe my niece will take some of it. I got to watch a lot of strange (to me) TV with the kids: iCarly, Sponge Bob Square Pants, Home Alone. And we went down to the Beach with the wheelchair, and walked in the sunshine. It was such a treat to feel the warm air, even poisoned as it is with exhaust fumes blasting off Lake Shore Boulevard, followed closely by the lovely east end sewage treatment odour. That's my Toronto.
Liz brought me homemade chocolate chip cookies, homemade mushroom soup, great bakery croissants and pain au chocolat, and chocolate gelato. Nothing tastes quite right at the moment, but I still manage to worry down lots of food.

Shit just happens

2010-03-20T02:30:00.003-04:00

As before, I defer to the excellent blog of Dana Jennings to tackle a subject I've touched on briefly here: the words people use around cancer, such as "battle," that seem so useless when you're actually in the situation. I really don't want an obit that says I lost my battle with cancer, since it's not an even battleground, and it's not really a battleground at all in the sense that a human being can't actually win against what are really random circumstances. I know that completely contradicts what some people believe about optimism and the human spirit, but I don't believe that people who "lose their battle" were somehow not sufficiently strong or positive -- or that those who declare they will beat their cancer, and do beat it, have some magic weapon the rest of us don't have. Barbara Ehrenreich's book Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America deals with this eloquently. As does Jennings's blog.

What matters more to me than being declared a winner or a loser is how I live the time I have left. I don't think I'd mind someone writing that I finished my struggle, because it is a struggle, and it will end. But you don't win or lose that one. Shit just happens.

Home again -- and prognosis

2010-03-16T17:16:00.004-04:00

Coming home from the hospital yesterday was a bit weird. I was alone for a few hours and felt a little lonely. In hospital you feel like you're suspended while whatever you're there for is being done -- and you're certainly never alone in the crowd of nurses and visitors and patients and doctors. Even if you have no visitors, there are always people around. Plus, someone brings you a meal three times a day, which motivates you to get up. Somehow the fact that I am now officially palliative (12 months or less to live) didn't completely sink in.

At home, I can think about the new circumstance more, but I'm still intellectualizing it and trying to control it rather than feeling it. Or at least trying to control the few things I can control. I like to look at it as strictly a bureaucratic necessity. Once the paperwork is done, everything is in place for the future, and some extra things kick in, including some insurance benefits.

Today I met with my new palliative care case manager and my very nice nurse, and it looks like the locally available services are pretty good. I don't want to die at home, preferring a palliative care ward, but at some point I'll probably be on a waiting list, so it's good to know that I can get an increasing amount of help in my home when my condition deteriorates, and already I am setting up home visits with a doctor. Apparently there are some free complementary treatments available, like Reiki and massage, which would be nice. They'll even bring in a hospital bed for free.

I gave up the option of the rehab hospital because it was going to take a long time, but I'm on a list for outpatient care, and a physiotherapist will also come to the house, which may be enough to keep me on my feet as long as possible.

Last time I came home from hospital, I had pretty much recovered from radiation side effects. This time my only side effects seem to be extreme fatigue, which is making me simply want to lie down all the time. And I'm still quite dizzy. My legs feel weaker, and that scares me.

I'm planning a vacation to B.C. with my mother and a friend. What a crazy thing to do. Who knows how I will feel in six weeks. But it's fun to plan, especially something expensive (I want to fly first-class). Anyway, that's what cancellation insurance is for, and that's what money is for, and I can't take it with me.

Pollyanna moments:

Last week I got so frustrated with the poor Internet connection in the hospital that when Geri suggested sneaking me over to the Eaton Centre to shop, I went straight to a phone store and bought a wireless modem turbo stick. Took a one-year contract! And had proper Internet (mostly) for the next four days. Who knows, I may need it again if I land back in hospital. Spend, I say, spend!
A friend raked my garden this afternoon -- tulips are baring their heads (little do they know what the squirrels have in store for them).
A beautiful, peachy bouquet of snapdragons from another visitor!
I'm sleeping like a baby, pain-free.

Doctor dance

2010-03-11T11:28:00.007-05:00

I've had six of my 10 radiation treatments so far -- still loathing the brain jolt and the instant metal smell -- and as usual I'm getting different stories from different doctors. I told my medical oncologist, Dr. Lee, that the brain doctor said my head tumour may respond quickly to treatment because it grew so quickly. Dr. Lee looked very doubtful. But Dr. Lee said my hearing should return; the radiation doctors said it wouldn't. She walked in yesterday and asked if it was getting better, in fact, even though Dr. Noguff says that, like last time, I wouldn't feel any positive effects of the treatment until a couple of weeks after it ends. Dr. Lee says she wants to send me home on Monday and that I shouldn't have much fatigue. Dr. Noguff says I will be very fatigued. Dr. Lee says that she can get me more home-care help through the palliative unit. The social worker says that can only happen if Dr. Lee is willing to state a prognosis, which she seems to be avoiding, maybe because she doesn't want to scare me. Some people are telling me all my hair will fall out (I had it buzzed off the other day). Some say only parts of it will. Some say hair loss might be permanent. It was ever thus.

I'm glad I'm in the hospital, though, as boring as it can be. The ambulance transfer for the treatments at the other hospital goes very quickly and smoothly -- much more smoothly than travelling from my house every day for 10 days would have done. They just slide me on a gurney, slip me in the ambulance (while I get 10 seconds of precious, smelly Toronto air on my face -- it's amazing how much I miss the feel of moving air), drive round the corner, slip me in for treatment (because the ambulance attendants are waiting, the technicians fit me in right away, and the treatment takes less than 10 minutes), then drive me back. It usually takes less than an hour door to door, and the hunky attendants are friendly and kind. Because I'm in a downtown 'hood I'm very familiar with, as we drive I enjoy gazing out through the ambulance window at all my old stomping grounds and remembering when I could navigate them easily and when my life was under my control.

Meanwhile, one becomes unintentionally knowledgeable about one's hospital roommate. Mine is a 47-year-old recovering crack addict and new grandmother who's been living in a shelter nearby and has a terrible lung infection. She's smart and personable and a little dramatic, but in a lot of pain. Her transgendered best friend clearly cares about her a lot, but her scruffy young boyfriend is controlling and sometimes mean to her. I'm rooting for her to get her surgery over with and follow her plan to go to college. In these circumstances, you not only get to hear one another's farts and peeing and vomiting and moans, but also intimate details of relationships and impressions through visitors. A weird and sudden camaraderie arises, if only in solidarity as sick people.

The Internet connection here is abysmal, so I hope I can actually post this.

Pollyanna moments:
• A visit from friends with their adorable seven-year-old son, who has the most amazing eyelashes I've ever seen on a human being, and drew me a picture of flowers and birds. And his mom brought homemade banana bread.
• A green orchid that fits perfectly on my tray table.
• Many other visits from friends and family.
• I can walk with my walker to the kitchen and heat up soup myself. Last night when I did so, there was a woman with two toddlers in there; I couldn't tell whether she was their mom or grandmom, probably the latter, and she was African. As I lumbered past with my hot soup, she shooed the kids out of the way and repeatedly told them to "let the grandma pass." I felt a little old at that, but I judged it a term of respect. Of course I'm plenty old enough to be someone's grandmother. I've even stopped minding when the nurses call me Mrs. Brouse. I deserve some terminology that acknowledges my senior position! I've heard that in other languages, like German and French, at a certain age the Mrs. term simply signals that you're older, not necessarily married, and I'm on board with that.

Brain fry

2010-03-06T17:06:00.003-05:00

It's not a thrill to be back in the hospital, but I'm glad I chose this option because my family doesn't have to worry that I'm not being looked after, and I don't have to arrange a gazillion (or 10, to be precise) rides to radiation treatments and back.

I met with a number of radiation oncologists on Friday. Apparently the cancer is spreading through my spinal fluid, causing the dural metastases in the lining surrounding my brain. They believe the lesions on the spine are sticking to the edges of the spinal cord and wrapping around the nerves (according to the careful notes Geri took!).

The good news is that the rapidity with which this big tumour has grown means it might respond equally rapidly to radiation treatment. Who knew. The bad news: I'm unlikely to regain the hearing in my right ear. I'm not sure about my equilibrium. Geri says she heard the doc say my balance would return to normal. The main purpose of the treatment is to stop the tumour growth and keep the symptoms from getting worse. There's a 70 t0 80 percent chance it will help.

To prevent new lesions from popping up, they decided to do whole-brain radiation. A month after it's done, they'll do an MRI, and if the tumours aren't shrinking, they can do a focused treatment called stereotactic radiosurgery, which is a one-time blast on the tumours themselves. Geri's notes say: A metal frame is screwed into the skull to keep the head still -- the doc says there would be no scarring. Freezing is local and there is no pain.

I'm also going to lose my hair again, at least the hair on my head (retaining my eyebrows will be a bonus). The brain doctor told me that your hair can disappear permanently in a strip down the middle, but Dr. Noguff said she'd never seen that happen. I've made an appointment for Tuesday to get most of it off, in any case. Other possible side effects: sore throat, headache, more dizziness and head pressure before it gets better, ringing in the ears and short-term memory loss that should return in six to 12 months. If I live long enough, I might get cataracts sooner than usual (not much need to worry about that, probably).

The surprise has been the treatments themselves, of which I've now had two. I've received a total of 50 radiation treatments this year alone, not to mention 25 of them six years ago. As I've said before, the treatments to my breast, armpit and spine didn't cause any sensations; they're like X-rays, and it's easy to believe while you're having one that it isn't doing much. The gradual onset of side effects -- and even improvement in your condition -- lets you know slowly that the treatment is real and effective.

For whole-brain radiation, a mesh face mask is molded to your skull; you are pinned down by it tightly during every treatment, looking a little like Hannibal Lecter, I would think. During my first treatment, I waited for the customary high-pitched whine of the beam, which I expected only to hear, not to feel. Suddenly I had the sensation that my brain was lighting up. It was subtle, but I had the definite impression that something had gripped my brain lightly. Even weirder, I could smell a metallic odour, almost as though something was burning. I mentioned to the technician that I could feel something, and she volunteered that patients claim they feel and smell whole-brain radiation. It brought home to me how powerful this tool is and what is really happening to me. Once you've radiated your whole brain, you kind of feel like the horse is out of the barn; there's no going back. It's not like I can do without my brain the way I can do without a breast or a few lymph nodes.

Anyway, I don't feel too bad as long as I keep still. The dizziness is hard to get used to and the deafness makes my head feel hollow. And I increasingly feel like I simply can't balance on my wobbly spine. When I sit on a hard chair, especially to take a shower, I sway like a palm tree in a breeze.

Pollyanna moments:

Visits from friends and family, and a spin around the block in the sunshine.
I wheeled myself to the Second Cup on the first floor to buy a treat -- an independent foray.
I was served a half-decent breakfast this morning.

Back to hospital with my leaky brain

2010-03-05T19:08:00.002-05:00

Quick post for those who want to know: I had the first of 10 radiation treatments on my brain tonight, and I'm headed for St. Michael's Hospital to be admitted for the duration of the treatments -- I'll be transported from there to Princess Margaret each day.

I'm not sure if I'll have any access to the Internet at St. Mike's, but I hope I'll be able to write more soon.

Have a good weekend!

Bad news -- and as much good as I can scrape up

2010-03-03T15:44:00.002-05:00

Before he died of lung cancer, Warren Zevon told David Letterman that he'd learned from having a terminal illness to "Enjoy every sandwich" -- which is also the name of a Zevon tribute album. My brother reminded me of this last night, and it was helpful advice.

I received the results of my head MRI yesterday. I don't have brain metastases exactly -- the lesions are coming out of my skull and growing in the lining between the skull and the brain. One of them is 2x2x2 cm, which seems large.

It was not nice news to hear, but I wasn't surprised. In some ways it was a relief to discover a cause that neatly explains the symptoms, namely the deafness in one ear, the pressure headache and the constant disequilibrium.

On Friday morning I'll be seeing a specialist in the brain metastasis clinic at Princess Margaret Hospital; apparently there are radiation treatments that can work, I don't know for how long. I suppose it depends on the size and position of the lesions. If they're treatable, I'll be going through more of what I experienced in January, including side effects that make me very ill. Please, let me get some respite for a while after that. If there is no response to treatment, and the lesions get bigger, I'll start getting seizures, nausea, worse vertigo, vomiting -- God knows what else; weird behaviour and vision l0ss, I suppose. It will not be pretty.

I asked the doctor if she was prepared to tell me how long I'll live, and she said it's still impossible to say. Will this be my last year? Quite possibly, she said, but not necessarily. Seems to me that the speed with which these metastases are appearing is not a very good portent, though.

But I'm not going to think about that today. I'm listening to Oliver Schroer's stark violin, and Oscar Peterson's ringing piano, and Don Ross and Michael Hedges on guitar, and doing bits of my taxes in between other things, including a walk around the corner using my walker to mail a letter, with my neighbour accompanying me. Felt like I'd gone eight miles, and my back was killing me. My feet are not working well, but I've got enough strength back in my legs to get around by dragging them a bit. Anyway, the fresh air and sunshine were a treat.

Let's find some Pollyanna moments:

Daffodils my mom received (which she isn't enjoying at the moment because she's in Kitchener) are glowing in the kitchen.
My brother Paul visited last night and emptied the commode pot and washed the dishes and wheeled me down to Gerrard Street to have dinner at my favourite Indian place, which I hadn't visited in months.
I still have a good appetite, probably due to the steroids. The doctor put me on a much larger dose of steroids yesterday to help control the swelling and edema on my brain, and if I'm not imagining things, I think my head feels a little better today. And I have the characteristic red cheeks already. Not cleaning out the fridge at 3 a.m. yet, or anything like that.
Applegrove Community Complex has sweetly given me a volunteer award because of the seniors' writing workshop I conducted last fall, to be presented at their AGM on March 31. Who knows if I'll be able to attend, but I'm honoured and surprised. The workshop was very satisfying for me, despite how ill I felt the whole eight weeks, and I think my students enjoyed it, too. Wish I could do it again, but without a voice or two working ears and legs, I guess that's out for now.
I don't have any pain in my hips or legs, so I hope the cancer hasn't spread there yet.
My lungs and heart are still working just fine (I know, this could prove to be a burden at the end).
The sun is shining.
This week I'm having lots of visitors checking in on me while my mom is home in Kitchener. They've been so helpful, and because there is a risk I'll have a seizure, it's good to have company (though I treasure my alone time in between, I must confess).
I'm still alive, and I'm not nauseated and my gastro tract is functioning pretty well.
I actually managed to eat a sandwich at lunch today -- and I enjoyed it! Thanks, Warren.

More anti-anti-depressant stuff

2010-02-28T12:16:00.002-05:00

Another interesting article, this one in The New York Times Magazine, about doctors who think depression has an upside. I think they're confusing sadness in response to a recent event with chronic inability to be happy or even feel:

http://www.nytimes.com/2010/02/28/magazine/28depression-t.html?ref=magazine

Pity vs. self-pity

2010-02-26T16:42:00.003-05:00

The amount of denial I've been able to sustain over the past year is pretty substantial. Or perhaps it would be kinder to myself to call it the amount of optimism and patience. I watch each new symptom arrive, and I see it as just something new to cope with -- more important, something that can be surmounted, treated or simply tolerated as not that horrible, and, because I refuse to see the bigger picture, not tragic in the scheme of things. (I'm also lucky enough that I am on disability insurance and don't have to work at the same time as I cope with all this stuff.)

In some part of my brain, incrementalism makes me see each new problem in isolation, or at least not such a big deal all by itself. My perspective is probably a result of the anti-depressant to a great degree.

But as things mount up, I'm beginning to accept that I'm on a pretty slippery slope; that the disease is devouring my body in fits and starts and though I still haven't been given a time limit, I am not the person I was four months ago. How does it feel to be me? I can't walk; I'm constantly dizzy; I feel as though I have a metal girdle around my middle; I'm deaf in one ear; I can't speak above a whisper; and I can't swallow food without choking. When I put it like that, it does sound dire, unfair, sad, pitiful, all the things that I know other people think and sometimes say when they hear what I'm dealing with. I recognize their pity (though most people are pretty upbeat around me), and it's always a little shocking to me. For me to admit it's that bad means to admit that I'm dying. That's a very hard thing to do.

I find it interesting that while I was even sicker than this, in the hospital, all I wanted to do was die. All my life, I had watched portrayals of people who were suffering so much they craved death, and the poverty of my imagination made it impossible for me to comprehend that impulse. Suddenly, in the hospital, I understood it deeply. Death seemed a welcome respite, and life had little appeal.

Conversely, as I began to feel better, my energy level rose and my legs gained a little more flexibility (and my anti-depressant was increased), I started to want to live again. But oddly, when I do get sad now, I get really sad. When you feel well, you want to live and you feel happiness, and having a terminal illness is a real downer, so in turn you can get quite blue at the thought of soon losing all you hold so dear. On the other hand, since feeling really sick saps your will to live, and there isn't much left to hold dear, it must make dying much easier than I would have expected. But who knows: maybe when I get really close to it, my attitude will change.

And maybe the fact that I feel somewhat better than I did last month means I'm not at death's door. But my quality of life has deteriorated more than I've been willing to admit.

Those who've taken anti-depressants may recognize how much easier they make it to ignore one's troubles. A friend who has taken them agreed, and said, "Yes, you're just building up to a big, devastating emotional crash, and all of a sudden you say, 'Gee, wasn't I going to make pancakes?' and in an instant you've been completely distracted from your difficulties." You just can't sustain your depression. It's like all your problems are behind a door -- you know they're behind that door, and you know exactly what they are, but the door is allowing you to ignore them.

There was an interesting article by Louis Menand in The New Yorker this week that included a lot of evidence that anti-depressants operate mostly by placebo effect, which I find hard to believe, but the opinion that up to a certain point we should allow ourselves to experience the real highs and lows of our lives rather than medicalize them makes a certain amount of sense to me. In theory. In practice, I can't do it.

Meanwhile, today I saw the ear, nose and throat specialist and had a hearing test. I learned that:

There is an injection they can do to try to cure the vocal cord problem with an 80% success rate (though it may be temporary). It's done under general anesthetic and involves some kind of compound related to hyaluronic acid. And it's not covered by Ontario health insurance.
The hearing loss is not related to the vocal cord paralysis.
The hearing loss in my right ear is pretty much total.

So tomorrow I'll have an MRI of my head, neck and spine, and pretty soon I'll know how much farther this cancer has spread. But I've been saying that for a year now! I guess you just never know until it's almost all over. Hence, the adage "take one day at a time."

In the meantime, I have a ferocious appetite. It's really hard to choke the food down, but all I can think of is food, after a period of having little appetite. It's either the return of my usual emotional-eating pattern (especially since I'm not exactly occupied with pressing things all day), or the drugs I'm taking.

Birthday and rant

2010-02-22T12:31:00.004-05:00

It's been a busy week. Mom is here for a week or so, and we've been having belated birthday parties for her; the house is filled with cake and flowers. A bunch of my friends kindly feted her and gave her a beautiful pendant, and my brothers and their families came over for lunch yesterday. So, lots of Pollyanna moments.

Meanwhile, I went to my oncologist, and she is puzzled by the fact that I've lost most of the hearing in my right ear, and was having pretty serious double vision, although the latter has improved considerably in the past couple of days. She says that if a cancerous lesion was causing hearing and vision problems, the problems would be persistent, and in fact the vision thing came and went. Anyway, she is trying to get me an MRI, and I will see the ear, nose and throat doctor on Friday. I hope I'll know soon what's going on, but part of me doesn't want to know, of course.

Completely off topic (I'm so sick of writing about cancer): yesterday I was reminded again of how little I understand society's view of what femininity is. Mom and I went to the dollar store yesterday afternoon -- it was such a glorious day, and I literally had not had a breath of fresh air or been out of my house for a week -- and were looking at greeting cards. The birthday cards were segregated into those for men and those for women, as usual. But what made a card suitable for a man? One had a quirky photo of a dog in an old car, and a perfectly neutral message inside; I seriously considered it for a female friend who loves animals and then noticed it was a card for men. Women don't like dogs? Cars? Birthday cards without hearts and flowers on them?

Meanwhile, the sound system in the store was playing a local radio station, which was broadcasting a Max Webster tune, "Diamonds Diamonds," one of their lighter tracks. Then the DJ started on about how guys used to take their girlfriends to Max Webster or Kim Mitchell concerts on the strength of their poppier songs and then the girlfriends would freak out when the hard rock began. Women don't like hard rock? I love all of Max Webster and Kim Mitchell's stuff and have seen them in concert a gazillion times, along with my sister. It's like those ads from Shoppers Drug Mart that warn men not to give women gifts that aren't womanly, like electric drills. I guess we single women are weird; we don't get romantic gifts, but we still have men in our lives, and some of my favourite gifts were from my father, who gave me, at Christmas and birthdays, my electric drill, my bench vise, a set of screwdrivers. He also gave me furry moccasins and a butterfly house and a huge fishing tackle box intended to hold sewing equipment, an ingenious idea as it turned out (he gave my mom one, too, but had a seamstress friend cover it with beautiful fabric and ruffles; I guess that's the romantic part). Anyway, I get so sick of this image of women still promulgated out there. It's so one-dimensional. Rant over.

What's next??

2010-02-15T16:11:00.002-05:00

I no sooner arrived at my house from the hospital than I began to notice a reduction in my ability to hear in my right ear; within a couple of days it was drastic enough that if I put the phone to that ear when someone calls, I can't make out what they're saying. I also have vertigo when I wake up in the mornings, and just slightly throughout the day. Which could also be the result of meds, the paralysis in my buttocks (which means I'm never quite able to balance when sitting), the fact that I don't move while I'm sleeping, etc. Or maybe it's connected to the paralyzed vocal cord, or maybe both are related to the cancer after all. Or maybe I have an ear infection? I've also developed a sore in my mouth and slight sore throat in the past few days. Apart from the odd twinge in my head, I have no headaches. Just a feeling that the room is moving.

What next?

Dr. Noguff told me that the radiologist who read my MRI at Princess Margaret Hospital said he saw something that could be a "leptomeningeal deposit" at L4 and L5, but he wasn't certain. As far as I can determine, this animal is something that can spread to or from the brain. So I guess that's the next thing I have to get checked out.

Meanwhile, I am adjusting to being at home and only being able to get around with the walker. My brother got me a walker that has a little basket with a tray in it, including a cup holder, and that's been making a world of difference. Not being able to walk and carry things in my hands at the same time was a nuisance.

I haven't been upstairs in my own house in six weeks, but with help I can manage the basement stairs, which are shorter. I have a personal support worker coming in from government-paid home care for an hour five days a week, which is just enough to give me the help I need to take a shower in the basement bathroom (sitting on a shower chair), tidy up my living-room couch bed and empty the commode pot.

I'm trying to do exercises each day, but my shoulder blade pain is so bad sometimes that I just want to lie down. Still, there are:

Pollyanna moments:

Matt flew out from Alberta to stay with me for five days, which gave my mom some respite, and we've had lots of fun watching movies and having laughs. And of course, Matt has been cooking and cleaning his little heart out. My appetite is much improved, even though my ability to swallow still makes it tough and slow to eat much. Still, when you have an appetite, you try harder. For the first couple of weeks in hospital, before I began taking the digestion drugs and before the radiation side effects calmed down, I could barely eat at all. (My body, when I see it naked, looks like one of those awful photos of refugee children in developing countries; so much muscle wastage because my weight loss was so rapid, a distended belly. But my hair has grown in thick and curly, so I'm not completely hideous.)
We went out for dinner to one of my favourite restaurants, Gio Rana's, with a friend last Friday evening. My eyes were bigger than my stomach and we ended up taking home a doggie bag we're still eating from.
Yesterday we took in a play, Cloud 9 by Caryl Churchill. To my delight, a seat in the wheelchair section was not only cheap, it was accompanied by a free ticket for Matt, which made up for the cost of getting there and back by taxi with the wheelchair. The play was not the greatest I've seen -- a little dated and uneven -- but it was very good, with superior performances by some very accomplished Canadian actors, such as Megan Follows, Ann-Marie Macdonald and Ben Carlson.

The food I don't have to put up with anymore....

2010-02-11T15:38:00.004-05:00

Or at least for now....

Though the banana was a nice touch -- might have been brought from home, though, now that I think of it.

I'm home!

2010-02-11T08:39:00.002-05:00

Well, the deed is done, and I've left Princess Margaret Hospital after a month. So far I am happy to be home, even though I need lots of help. On the way home, my brother took me to some home health-care supply shops and we purchased an indoor walker with a little basket and tray in the front, and a seat with arms to make my basement toilet more useable. The walker is great; it allows me to transport little things around the house and the kitchen, in particular (my kitchen is large and there's a huge distance between one countertop and the opposite one with the sink), and gives me some independence I wouldn't otherwise have. It's amazing how limited you are when you can't carry things in your hands and walk at the same time. The basket even has a little cup holder. I can fix myself something to eat, kind of. My laptop fits in the basket, too, which is handy.

I slept very well last night on my couch, and I can't stress enough what a difference that makes. Back pain plagued me through the night in the hospital bed, but here I have no back pain at all at night (daytime is a different story). Maybe it's psychological, maybe the bed.

I've yet to find out how much home-care support I'm going to get, but it should become clear today. An occupational therapist is coming to the house this morning to assess the situation. I'm really hoping for a daily personal support worker, if only to empty my commode, a chore I don't particularly want to leave to my friends and family, and help me get into the basement for showers, and more important, out again.

Today I'm also going to call a handyman and get some grab bars installed in the shower and elsewhere in the house.

Mom leaves today and Matt arrives tonight for five days, so I'm well looked after for now. Mom will return when Matt leaves, but I'm worried that she's overextending herself, what with having to look in on Dad as much as she can in Kitchener and live her own life there. Still, she insists on wanting to look after me as much as she can -- mother to the end.

Pollyanna moments:

My appetite has improved quite a bit, and despite the difficulty swallowing, I'm getting a lot more food down than I was a couple of weeks ago. I ate a whole frozen pasta entree last night.
I was scheduled to host my book club tonight, and I'm going ahead with it. Looking forward to seeing my friends in my home.
The sun is shining! We got just enough snow yesterday to lighten up the world, so the view from my kitchen is splendid.

Blowing this pop stand?

2010-02-08T15:45:00.003-05:00

I had an overnight visit at my own house on the weekend -- what a treat after four weeks locked up in this hospital! Just driving down Dundas Street with my neighbours and my mom felt like an exotic excursion. It was great to be home, surrounded by my things. Getting into the house was tricky. I had practised with the physiotherapist to get myself up steps, but unfortunately we didn't practise what to do when you get to the top step and the railing runs out. I had to have somebody lift my legs up for me. Similarly, I managed to get down into my basement where my office and a bathroom are, but going up again got almost impossible when I got to the top step -- again, my brother had to push my feet up for me.

I needed my mom to do things like cooking and dishes, but I think I could manage a little of that with help. I could walk around the house with a walker, or by grabbing furniture and countertops. And I had a very good sleep on my living room couch. Sleeping in the hospital has been an ordeal, because so many of my roommates have been snorers. My current roommate, a young mother of two who is very ill, doesn't snore, but her husband sleeps on a cot beside her bed at night, and he snores. They're lovely people and very kind to me -- extremely religious; their church friends regularly surround my bed and pray for me. I'm sure the praying won't kill me, but I could do without the noise.

So, I returned to the hospital last night determined that I would simply check myself out and wait at home for the bed in the rehab hospital. It's a big gamble, because as much as I hate being in the hospital, it's a pleasant place with excellent care and terrific nurses, and I feel very safe here. I will feel much more precarious at home. Still, when I talked to the social worker about it this morning, she mentioned that I may be not just weeks away but possibly months away from getting a bed at Bridgepoint, the only place that has agreed to take me. Their waiting list is long.

I certainly can't see languishing in this hospital for weeks and months. So I've put in a request with my doctor to check myself out, possibly as early as Wednesday. I believe I'm prepared to live mostly on my main floor. I have to purchase a couple of items like an extra toilet extension and another walker, and I've yet to find out how much personal home care I can get. My hope is that a support worker can get me into the basement every couple of days to take a shower.

Mom is staying with me until Thursday, when she'll return to Kitchener, and then Matt will arrive to look after me. He leaves on the 16th. After that, it's poor Mom again, until I get confident enough to stay alone, or I organize enough friends to take turns spending a few hours with me.

My brother is horrified that I'll fall or get caught in a fire without working legs. I'm thinking seriously of starting a search for an apartment that's all on one floor, possibly even a retirement residence.

Pollyanna moments:

On Saturday night, even though it meant manoeuvring me out of and into my house again, I took my brothers and their families, my mother and Diane out to dinner at a local roadhouse my neighbours and I frequent. It was great to feel like I was doing something normal! Even if I was in a wheelchair again. Of course, I couldn't eat much and had to watch them put away my favourite souvlaki dinner while I satisfied myself with a small Greek salad and a few forkfuls of mashed potatoes and gravy. But it was worth it to get out.
The weather has been amazing -- no snow for anybody to shovel, or to get in my way when I'm trying to enter my house. This may change on Wednesday, though.
I definitely feel stronger every day and I'm moving about more easily, compared to the sack of potatoes I was in the first couple of weeks I was here. My appetite is better, notwithstanding that the paralyzed vocal cord prevents me from eating much (it took me an hour and 20 minutes to get through a small bowl of shredded wheat on Sunday morning). And the domperidone seems to have quelled the reflux and vomiting. The back pain is the biggest problem, aside from not being able to walk. But that's what drugs are for...

Hopeful

2010-02-03T18:23:00.004-05:00

The new drug to quell my acid reflux and vomiting seems to be working, and well it should with a name like Domperidone -- sounds like fine champagne. So I'm feeling much better, more mobile, more energetic. I'm doing more reading, and slowly venturing around with the walker. And I can concentrate on watching stuff on my computer -- the other night I watched the movie Up, an episode of Two and a Half Men, and Barack Obama's State of the Union address.

I'd be dishonest if I didn't admit that increasing my dosage of the anti-depressant drug Celexa has helped me greatly. I barely recall the first two weeks in the hospital; I really wanted to die, in a passive sort of way. I know people are hot and cold on the use of anti-depressants, but in my case they have changed my life for the better, and I feel fortunate to have them in my arsenal. And I decry the societal stigma against such drugs and mental illness generally.

Recently I wrote about hope and hopelessness. My friend Liz has a wonderful friend Donna who read my blog and sent me some writing by Jerome Groopman, Harvard professor of medicine and author of books such as The Anatomy of Hope. He talked about hopelessness springing from the notion that we don't deserve something better, and I could relate to that. When it comes right down to it, the things I never got in life, I thought I didn't deserve.

It was comforting to realize that I deserve to get better for a while. I may not get better, but if I don't, it won't be because I didn't deserve it. Why did it take me until the age of 52 to get that through my skull?

I interviewed a young woman for the back page of the last issue of Look Good Feel Better magazine, a recently married student who has an incurable cancer. When I asked her about the future, she said she had decided it was OK to look to the future as long as one didn't get attached to it. Those words have helped me.

So today I am hopeful, but I don't look very far down the road. My next goal is to get a day pass and make a trip to my house.

Pollyanna moments:

Cream of tomato soup Robin brought from the George Brown College Chef School store.
The lovely little bag Lina crocheted for me is perfect to hold my toothbrushing paraphernalia and hang around my neck so I can get into the bathroom in the wheelchair without spilling things all over.

More ups and downs

2010-01-31T16:21:00.002-05:00

I've been in hospital more than three weeks now; can't believe it. Developments have been both encouraging and discouraging:

The doctors were paying more attention than I'd thought, and had the nurses remove the catheter earlier this week. What a relief not to be lugging around that smelly thing. So far I am peeing normally, and that's a relief. As long as I have someone to bring my walker to me, I can get to the bathroom on my own pretty well.

Every couple of days I get a little more movement in my left leg; suddenly yesterday morning I could kind of raise my foot by itself and even lift my knee a bit more. It's odd how these movements return suddenly; one second I can't do something, and the next second I can. I continue to feel tight and numb in many locations, including my groin, which feels odd to say the least.

The physiotherapist took me to a stairwell, and showed me I could, with effort and help, get myself up some steps. This was a great relief, because it means I could actually get into and out of my house if I get a day pass. Three weeks ago, that was impossible, so thank goodness for this blessing.

My shoulder pain is up and down. I take oxycodone and look for comfortable positions to sit and lie in.

The worst part: I continue to have great difficulty eating and I've vomited the last two nights. The palliative care doctor was in today and says this can be a permanent feature of spinal cord injury, even with cancer, so I'm discouraged. I'm not getting enough nourishment to feel strong enough to recover. I'm starting a new medication tonight for my poor beleaguered gastrointestinal tract.

Pollyanna moments:

Today I had to miss my father's 75th-birthday celebrations in Kitchener, but through the miracle of speaker phones, I was able to participate a little. The best part was hearing everyone sing and play "The Blackfly Song," a family favourite that Dad loves.
Joan D. flew in from Calgary for a couple of days, and I am being treated royally as usual. It's great to see her.
I'm feeling strong enough today to be a little productive, write a letter, do a puzzle, blog, etc. Let's hope I can keep down some food today.

A little better today

2010-01-27T13:48:00.002-05:00

The past several days have been clouded with an enormous amount of acid reflux, making it very difficult to eat, and causing me to vomit. But today I have a better appetite and the food is going down a little better. I'm hoping some of this is just side effects of the radiation that will go away.

After spending a bit too much time despondently lying abed, I'm getting into my wheelchair more often and trying to do a few more things. For a while there I was really getting into the staring-into-space thing, and it's hard to say how much of that is depression and giving up and learned helplessness, and how much is just enjoying doing bugger-all at this stage in my life. I can while away quite pleasant hours just looking out the window sometimes. This morning I made myself manoeuvre the wheelchair into the bathroom to brush my teeth by myself, the most independent thing I've done in nearly three weeks.

The good news is that each time I stand up with the walker, I feel a little stronger and more confident, and I can now slide my left leg along enough to move forward with both legs going in the same direction. So I can walk after a fashion with the walker, although it's slow and unsteady, and my blood pressure has got so low that I have dizzy spells.

It will probably be another couple of weeks before there's room for me at Bridgepoint Health for more rehab. I get a little physio here most days, but not much.

The food continues to be lousy and the nursing care continues to be exemplary -- not a bad apple in the bunch. I feel well cared for on that level.

One question: will they ever remove the catheter? Am I using it just because I didn't have enough mobility to get to the bathroom, or do I have paralysis preventing me from peeing properly? Nobody seems to want to address this.

Pollyanna moments:

My cousin Lynne visited, with great photos of her grandkids, and gave me a healing touch treatment.
My mom is still steadfastly momming me every day (see "learned helplessness").
I am drowning in chocolate and must call a halt to any more being brought in! Come and eat some for me! Yesterday a chocolate gave me heartburn, in fact; hope that will stop.

Restlessness

2010-01-23T07:59:00.003-05:00

I continue to feel incredibly restless and uncomfortable, with a lot of tension in my jaw. Relaxation tapes and Atavan still don't make it easy to sleep, but painkillers help. Much of my day is taken up by eating ice chips; mealtimes are a chore, a big change for someone who was such an enthusiastic eater. When I catch a glimpse of myself in the mirror, especially naked, it's such a shock I don't know who I'm looking at. My arms and legs are like flabby little sticks and my breasts are not where they used to be. Every couple of days I have a shower, which requires help from two nurses to set me on a commode chair and wheel me under the water.

There's still an iota of improvement in my left leg every day, so tiny that I'm almost afraid to acknowledge it. Outside of my professional life, I have never placed any trust in hope. In the realm of the personal, hope has never stood me in good stead, and in fact has brought me a lot of pain. So I tend to be the sort of person who expects the worst and is thrilled if I'm wrong. These are completely learned responses based on life's experiences. How does one learn to hope? Or how does one unlearn not to hope?

Anyway, I kind of mock-walked in a walker for quite a distance on Thursday, with the physiotherapists helping my bad leg all along the way. I did feel more sensation in my heel, which helped me to know where it was each time they put it in position. Here's my modest hope: that some day I will be strong enough to get around a little in a walker and then can have my catheter removed and take myself to the bathroom.

Many Pollyanna moments:

Neil flew out from Vancouver for a day just to see me and brought delightful gifts. The best one: he twisted a piece of silver wire into a makeshift tiara that fits perfectly on my head. He also brought fresh fruit, and I must say the ripe apricot was a much better dessert than the "Kozy Shack Tapioca Pudding" in its sealed plastic container that came with my so-called meal.
Helen flew out from Edmonton, also bearing gifts, including a little red piggy bank named William. She says he's William the Wish Pig, and she wants people to put coins in him, one cent for a wish, and later when I shake it I'll know lots of people are wishin' and hopin' for me.
My sister is here for three days, and I appreciate her taking time away from her kids (and her partner for helping out) so we can have some time together. And Mom is getting some respite at home.
Other friends have brought other gifts, so that my window ledge is so crowded I can barely see the gorgeous sunrises on the lake. We've had unusually clear weather lately. I wonder if there will be a snowfall at all in January?

A walk in my socks

2010-01-19T20:51:00.002-05:00

I don't know how to describe how I'm feeling these days. Uncomfortable, rather than in tons of pain. Can't get a position to sit or lie in that doesn't make me antsy. So much pressure in my rib cage that I begin to feel as though I can't breathe and have to take an Atavan. Back aches a lot, and my spine feels like rubber. Still choking on food and talking in a weak whisper, which really does add to my overall feeling of powerlessness.

The good news is that some infinitesimal movements are returning to my left leg; don't know what to expect there, but the physiotherapist keeps standing me up and today I took a few meager steps with a walker. The left leg really doesn't do much except feel numb. Exhausting. Now the wait is on to get me a bed in a rehab hospital -- could be days or weeks before that happens -- which will be either Bridgepoint Health or Providence.

When I'm going somewhere on a stretcher in an elevator, I find myself mesmerized by folks who get in on their own two legs, coats and boots on, Subway sandwich in a bag or a Tim's coffee in their hands, ready to start or end their day. They're just going to walk out of here, I think to myself, and go somewhere all by themselves. Outside in the air, of their own volition. It seems the most exotic concept, and the envy I feel is hard to stuff down.

I think part of my restlessness comes from tamping down a reserve of coiled energy that simply wants to get me up and onto my feet and the hell out of this joint. It's awful.

Pollyanna moments:
• Lindor chocolates
• Cyclamen, red tulips, baby daffs, irises and white lilies
• Mom's lentil soup.

Strange anniversary

2010-01-15T22:05:00.003-05:00

It was a year ago today that I found out my cancer had returned, and I stopped going to work the following day. What a year. Nuff said.

A couple of days ago, a speech pathologist visited me to talk about my paralyzed vocal cord, and advised me that there are strategies for swallowing. Expecting something complicated, I asked what they were. "Turn your head down and to the right when you swallow," she replied. And it works. Not ideally, but it works, enough that I don't choke nearly so often. The food that might collect in the little pocket created by the damaged vocal cord gets pushed aside by the neck muscle and goes down better.

I have been suffering with this for three months, and have seen the ear, nose and throat doctor twice, and she couldn't have told me this?

Today the radiation doc was in, and asked me if I had been wondering about my prognosis. There is no guarantee that because the cancer is spreading in the spine so much that it will necessarily start spreading to the vital organs right away; all she would say was, "Could be three months, six months, 12 months, 18 months, two years...."

So I am not planning to save a lot more pennies.

I am oddly not afraid to die now. Probably when it gets closer, I will be. But right now I am tired of suffering, and there is much more to come.

Still, Pollyanna moments abound:

Lovely notes and comments from blog readers I hardly know but who were kind enough to stop and write.
Daryl's funny stories about all the characters on my beloved Highfield Road.
So much chocolate has been coming into my hospital room!
My mother is being a calm, towering brick, as are my siblings.

Life or limb?

2010-01-14T04:37:00.002-05:00

I couldn't write much more than a two-line email yesterday, if that, because the pressure on my chest was so great I could barely sit up. It's now four a.m. Thursday morning and I'm feeling a little better, so will try to catch up.

My radiation doctor refers to cancer threatening both life and limb, and she allowed as how my case was "frustrating" because it appears my life is not being threatened, only my limb. In other words, I'm not ready for end-of-life care but I am probably going to be quite disabled. Which means very different kinds of preparations.

I reminded Dr. Noguff that she had told me Friday night that the radiation treatments were very likely to work. She explained that she meant they're very likely to arrest the tumour growth, but not necessarily to make my leg any better than it is now. She mentioned a fifty-fifty chance of ever walking again. You can imagine Mom and I were taken aback. Apparently miracles do happen, but they don't call them miracles for nothing.

So...my last radiation treatment will take place next Tuesday the 19th, and then I will be spending a good long time in a rehabilitation hospital (barring the aforesaid miracle). I am praying it will be Bridgepoint Health, since it's not far from my house and therefore easier for my mom to get to me.

I am stunned, of course, only partly absorbing the news. The Pollyanna side of me always surfaces first, the part that is always bored and looking for some new venture/project/happening in the future. "I'll get a new apartment! I'll start a new phase of life! It will be an adventure!"

The reality will be less than stellar. One day at a time. I am heartened this morning that I'm able to sit up and type with only a little discomfort, thanks to Atavan and Nortriptyline. That's a small step.

The woman with whom I am sharing my semi-private room snores. Not like a freight train; I've heard louder. And I would prefer the rhythmic cadences of a freight train. No, she snores operatically (no offense to opera fans, but I don't find the genre very musical), in great narrative arcs. Little whinnies of helpless despair, moving to short bursts of peaceful contemplation, building up to a wide variety of loud exclamations, existential questions, flights of fancy, and culminating in cacophonous roars of insight and bombast. A very expressive instrument, but it's impossible not to concentrate on it and therefore sleep is dead for me.

However, the lady told me that she had not had a good night's rest in six weeks, and when they gave her something that allows her to sleep, she was so excited that she'd slept the night through, I couldn't help but be happy for her. I know too well what it's like not to be able to rest because of pain, and my pain is much lessened now. So I will listen to her snoring and smile and thank heavens for small blessings.

Dispatch from PMH, Day 5

2010-01-12T09:13:00.002-05:00

This new phase of my life has really thrown me, although I believe it must still be easier to acclimate to deteroriating health than to suddenly have a car accident and wake up a paraplegic.

Despite four radiation treatments, the numbness has spread up to my waist on the left side. I can barely feel my left buttock. The technicians tell me it could get worse before it gets better. And I must remember that when I had the upper-spine radiation, the acute pain didn't go away until about two weeks after the treatments had ended (as predicted). But it's easy to believe that I've lost my leg for good, and the past few days have been terrifying.

To have my treatments, I have to be moved from bed to stretcher by three or four people like a sack of potatoes. When the physiotherapists came yesterday, they had me sit up for a while in a wheelchair, but a couple of experiences of trying to shift myself using a walker were frightening to me. My better leg feels like it may be going in the same bad direction, but it could just be because I've been lying in bed too much.

My dear mother comes every day and tidies constantly, reaching for things I need, fetching ice chips, preparing food (the hospital food is terrible). I'm cast back to 1966, when at age 9 I was completely immobilized in a body cast in our dining room in northern Ontario for three or four months, and poor Mom had to care for me along with three boisterous youngsters. Bed pans, food trays, sponge baths, the whole nine yards.

In terms of life quality, my paralyzed vocal cord is making me just as miserable as the legs. Last night I passed a sleepless hour reading a Toronto Life that Angie brought me yesterday, and I found myself salivating over the restaurant reviews -- but that was because I was lying down. The minute I sit up, I feel so full I can barely put a thing in my mouth, and even if I do, it's so hard to swallow, I'd rather not eat at all. Meanwhile, my poor compressed abdomen is full of gas. This is partly because medications are making me constipated. But it's also because the paralyzed vocal cord causes me to swallow a lot of air and saliva. Ingesting the massive amounts of pills that I must take every day is not fun.

I will spare you the details of the adult diapers.

I've been seen by a palliative care team, and I'm not sure what that means. Apparently they specialize in symptom management and planning for cancer patients, so I don't think their presence means I am imminently dying. But I may be on the slippery slope to serious disability, I guess.

Pollyanna moments:

Princess Margaret Hospital just got wireless internet for patients six months ago -- it's a lifesaver for me.
Mom brought me a stuffed puppy. I have named it after one of my nurses: Espiranza (hope).
I've had this semi-private room to myself since I got here, but I don't think that will last long.

Dispatch from PMH, Day 2

2010-01-09T20:29:00.003-05:00

To continue my tale of yesterday: the private ambulance worked out pretty well. For $150, a firefighter and a paramedic, no doubt moonlighting, strapped me into a canvas chair and carried me down my steps while I gritted my teeth and kept my eyes closed. I get really nervous when I don't have both feet on the ground (trust issues, anyone?).

Dr. Noguff examined me very thoroughly and was alarmed at the jerking spasms that were now happening in my left leg every five seconds. My leg was numb up to mid-calf. She said the spasms indicated mid-spine problems rather than lower. She pulled all the strings she could and got me in for an MRI by 1 p.m. As usual, it was like being in a coffin while being forced to listen to outtakes from a recording session by Kraftwerk or Holy Fuck.

Somehow the doc managed to track down Dr. Second, the orthopod, even though he was away from his office, and he promised to look at the films as soon as he got back to his hospital and to consult a neurosurgeon at the same time. Time was tight because it was late afternoon on a Friday. Luckily this hospital and his hospital are part of the University Health Network, so they have access to all of the same online records. Oh, for system-wide e-records. Will it ever happen in Ontario?

Around 4 p.m. Dr. Noguff let me know that there is a cancerous lesion in my mid-spine that is probably the culprit. It's very serious and without treatment will lead to paralysis, not to mention colostomy and urine bags. She posited that the surgeons would probably recommend removing it surgically and that it might even happen that night or the next day, followed by weeks in a rehabilitation hospital.

My carefully cheerful facade kind of crumbled at that point, and I forestalled collapse by phoning all my family members and asking them to come to the hospital. I had always felt that before spinal surgery, with all its attendant risks, I would give my siblings some directions about things in my house, my will, etc., things I should have made clear to them long ago.

Half an hour later, Dr. Noguff had heard back from Dr. Second and the neurosurgeon, and informed me that they had ruled out surgery. Either the tumour is too entwined with my spinal cord, or my bones are too soft or both -- I didn't get a clear picture because at this point Dr. Noguff was rushing around arranging for a hospital bed for me, and for radiation treatment, which she wanted to start right away. More frantic phone calls to family to calm them down. By 8 p.m. I had had my first of 10 radiation treatments.

Meanwhile, by lunchtime the numbness in my leg had spread to the knee, and by 6 p.m. it was halfway up my thigh. When I look down at my foot, I get the impression it's someone else's. My leg won't move of its own volition no matter how hard I will it to. I have to lift it with my hands, and if I don't prop it up, it just falls over like a limp noodle.

I'm reduced completely to bed rest; can't even go to the bathroom without a bedpan, and I have a catheter.

This is all becoming a bit too real to me now. People are starting to act like I'm really sick, and I guess I am. I'm terrified that I am about to lose my independence for good. Will the radiation work? Dr. Noguff says there's a good chance it will. But will it simply be a temporary measure? Where else will the cancer show up next, and when? Impossible to know. And, above all, why didn't somebody do an MRI a week ago?

The radiation treatment causes nausea because it's around my abdomen; I'm getting powerful anti-nausea drugs, but I still vomited today, what looked like bile. My digestive system is really screwed up.

It must be awful to read about a person's slow disintegration. I still have hope that some better days are ahead. I have to.

But I do spend time reminiscing about some of the nice days I had this year in between treatments: my trips to Alberta, and Stratford, and Massey. August, when I had a radiation treatment every day but felt strong and well and was able to move about the city alone, which is now my measure of "life is good."

I've had plenty of visitors today, including my whole family except poor Dad, who doesn't even know I'm in the hospital. This past week his youngest sister died from complications of dementia at about age 72; she was a firecracker of a woman whom I took after both physically and in personality. I'm happy she is no longer suffering. Rest in peace, Aunt Faye.

Last, but not least, I want to clarify what I wrote yesterday about Diane trying to get me up the stairs in my house on Thursday: it was entirely my idea, not hers, and not a very good one. I thought we could do it if I was sitting on my bum, but it didn't work, and luckily she is strong as an ox and could catch me.

Pollyanna moments:

My nephews and niece came to visit me in hospital today, even though I know it's a little scary for them to see me like this.
The nurses so far have been exemplary. Last night when my lovely Somali nurse checked on me I got a bit weepy, and she immediately sat down and took the time to hold my hand and talk with me about everything under the sun: families, children, religion, culture, the pros and cons of being married and being single, professional distance. She is an angel in hijab.

More tales from Cancerworld

2010-01-08T21:13:00.003-05:00

Greetings from my moderately appointed semi-private room in lovely Princess Margaret Hospital, which promises to be my home for quite a few days to come.

I was quite frustrated after seeing Dr. Lee on Monday. On Wednesday my brother got through to the orthopedic surgeon's secretary, who had not yet heard my Monday and Tuesday phone messages (she was working her way through the holiday overload). She said Dr. Second was booking patients in March. I told her it was an emergency, and she said I should go to the ER. I told her I had done that a week before, without any resolution, and that Dr. Lee wanted me to see him. Then I needed a referral letter from her, she insisted. Finally, she agreed to accept a copy of my last CT report and a letter, which had to be faxed, not scanned and emailed, and she would see what she could do. So my brother, bless his heart, went out and faxed same, picking up a commode for me on the way home, which he installed in my front room, and not a moment too soon because I could not make the stairs any longer.

I called Dr. Lee's office and left a message asking her to help me get something happening. Thursday morning at 7:30 a.m. -- an hour after I finally got to sleep (backache keeps me up all night, and for the first time my left leg wasn't just jumping, it was contracting in a weird, uncontrollable spasm about every 15 seconds) -- her secretary called to say they had sent copies of my scans over to both Dr. Second, who's at another hospital, and my radiation oncologist, whom I'll call Dr. Noguff, who is at a third hospital.

Somewhere in there Dr. Noguff called me, to my surprise, and said she'd heard from Dr. Lee and neither of them thought this was a cancerous lesion pressing on my spinal cord, but she agreed that I needed to see the orthopod as soon as possible. I told her I wasn't having much luck, and did a little weeping about having to be my own family doctor, which she seemed to take up as a challenge. She said she'd track him down. "Good luck," I told her.

Meanwhile, I called Dr. Second's office to make sure they'd received the fax; the upshot was they called back soon after and agreed he'd see me on Monday morning.

I was supposed to go to an appointment with a counsellor at Wellspring cancer centre at 3 p.m., and Liz volunteered to drive me. Up until that point, I had been able, with help, to negotiate the two sets of steps in front of my house. This time, it was a bit of a comedy. Poor Liz tried to scoot around me as I held on to the door frame and the railings, so she could help me down, and suddenly my leg gave out and I landed on my bum with a thud. Liz gamely turned me around and tried to lift me up so I could make it back inside the house. But my leg gave out again and I fell forward and banged my shin and knee (have some lovely bruises today, though it didn't hurt much).

A stranger passing by on the street volunteered to help, and he and Liz managed to carry me bodily back into the house. "You're obviously not leaving here except on a stretcher," said Liz, and I had to agree.

When I called to cancel with my counsellor, she told me to get to emergency as fast as I could go. All I could think to do was call 911, but when the paramedics arrived, they were only allowed to take me to Mount Sinai, which would have meant starting from scratch since my doctors are all at other hospitals. They explained about private ambulances, which I knew little about but which are cheaper though less well-staffed and will take you anywhere you want to go. So I decided to postpone going to the ER.

Finally, Dr. Noguff called at 6:30 p.m. and told me she'd exchanged emails with the elusive Dr. Second and he thought I should have an MRI. He has been saying for the past year that he could get useful information from an MRI, while Dr. Lee and others have insisted an MRI was impossible because of the metal in my back. (One nurse practitioner said that it would kill me!). I told Dr. Lee about Dr. Second's opinion many times, but no MRI has ever been done -- and no CT scan of my mid-back has been done in nearly a year.

Dr. Noguff asked me to come in the next morning (this morning) at 10 a.m. and she would look at my scans (which Liz kindly picked up for me at the other hospital) and then try to get me an MRI. She said I could go to emerg if I wanted to, but I probably wouldn't get an MRI any faster in the middle of the night. I arranged a private ambulance. My mother arrived from Kitchener in the middle of all of this.

I was so thrilled that, finally, one of my oncologists was getting serious about conferring with the orthopedic surgeon. Everything has seemed so fragmented up till now. At last things seemed to be moving along. Meanwhile, the spasms and lack of sensation in my left foot were moving up my calf, and when Diane tried to take me up the stairs in hope of having a bath, my leg just kept scooting out from under me like it was made of straw, and I almost killed both of us.

That's a long enough post for now. Will tell today's tale soon.

From bad to worse

2010-01-05T20:27:00.002-05:00

This is getting a little scary. I'm just dragging my left foot -- which feels like a block of ice -- behind me; I can't lift it up at all. My knees lock unexpectedly, and then give way without warning. I can no longer risk climbing the stairs to the second floor of my house. There's a bathroom in the basement, and those stairs are a bit easier, but still dangerous. I'm trying to confine myself to the living room and kitchen, using the walker.

Yesterday I saw my oncologist. She fetched the report from the CT scan of my lower back that was taken the other night when I went to the ER, and gave me a copy. It says clearly that there are no new lesions. Then why did the ER doctor tell me there was a new lesion? No explanation. Dr. Lee was very concerned about my symptoms, but could offer no solutions and said I have to see the orthopedic surgeon as soon as possible. I left him messages yesterday and today, laying it on as thick as I could ("I live alone! I can't use my stairs! I can't go to the bathroom!"), and nobody has responded.

Dr. Lee said they should have scanned my whole spine on New Year's Eve rather than just the lower part, and now wants to do another scan! Since each one is equal to 400 X-rays, apparently, I am not thrilled at how many of them I've been having lately.

Pollyanna moment:

The amaryllis that Alex brought me bloomed today, lovely and peachy.
Friends have been dropping by to wash dishes, help with laundry and fetch things from upstairs. What would I do without them? Should I be in hospital?

How I spent New Year's Eve

2010-01-02T11:54:00.003-05:00

I haven't had the energy to write for days, and I've been loath to just keep whining about how crappy I've been feeling. True to form, my body has been throwing one malady at me after another. The sciatic pain mostly disappeared a few days after the nerve-root injection, but my right leg continued to feel weak, numb and twitchy, making it difficult to walk and especially to negotiate stairs. Then I developed a ferocious lower backache that prevented me from lying down for more than a few minutes. I spent a week at my mother's apartment in Kitchener over Christmas, which at least has no stairs, but all I did -- besides a jigsaw puzzle my nephews gave me -- was pace the floor and take hot baths, day and night.

A few days ago, I began to notice that my other leg was becoming numb and twitchy. I took the bus back to Toronto, which was excruciating; both legs were so jumpy it was all I could do to resist getting up and pacing the narrow aisle. I had failed to take my calcium-magnesium pills to Kitchener with me, and since resuming them the twitching has lessened somewhat.

But the lack of control over my legs is getting worse and worse. I exchanged some emails with my oncologist on New Year's Eve day, and she told me to go to emergency right away. Here's what the American Cancer Society website told me:

When cancer threatens to paralyze, it's an emergency.
Sometimes the cancer will spread to a bone in the spine. The cancer can grow enough to press against and squeeze the spinal cord. This can show up in different ways:
back pain (pain may go down one or both legs)
numbness of the legs or belly
leg weakness or trouble moving the legs
unexpectedly passing urine or stool (incontinence) or problems urinating
If you notice symptoms like this, call your doctor right away or go to the emergency room. If not treated right away, this can lead to life-long paralysis. If the cancer is just starting to press on the spinal cord, it may be treated with radiation along with drugs. Sometimes surgery is needed to relieve the pressure on the spinal cord. This can prevent paralysis as well as help relieve the pain.

I have all of these symptoms; I'm not incontinent, but I have a hard time peeing and I'm very constipated despite reducing considerably the amount of codeine I was taking. My ribcage and abdomen are very numb.

So my brother and his wife were kind enough to take me to the ER at 3:30 on New Year's Eve. They stayed a couple of hours, and then Hugh joined me and we had a jolly visit in an examining room until 10 p.m. (I'd post some silly photos of us if I could figure out how to get them off my cellphone.) Luckily I was in and out before the real New Year's Eve craziness could begin.

I had a CT scan taken of my lower back, and the doctor said there is a new lesion in my left lower back (iliac?), which could be the cause of the backache, but nothing that looks like it is pressing on my spinal cord. She concluded it has to be a sciatic nerve problem.

Maybe the nerve-root injection made things worse? Somehow I doubt it.

Hugh and I walked around downtown trying to find a place to eat, amazed that almost no restaurants are open on Yonge Street around Queen and Dundas after 10 p.m. I walk like Frankenstein now, and very slowly, but with Hugh's help I managed to make it to Fran's on College. But of course I had a choking fit when I tried to eat a french fry, so I hurried home before midnight. My choking fits are embarrassing, and are just one more reason I don't want to go out in public. Trying to make myself understood with this hoarse voice is also tiring.

I had weaned myself off codeine to the point where I was just taking a little at night, along with amitriptyline to help me sleep. Yesterday I gave in and took a bunch of long-acting codeine in the late afternoon just to see what would happen, and I had several hours of being able to lie on the couch and just snooze, read and relax, without having to jump up every few minutes to relieve the pain. Sigh. It was heavenly. I can't remember the last time I could just rest comfortably in any position. I really don't want to take all these drugs, but I suppose I should be thankful they exist. I also had a better sleep last night than I have had in many days, with a happy dream about my maternal grandmother, in which she offered me some herbal remedies, and the two of us lay down on a grassy hill and watched the clouds. Not something that would ever have happened in real life; I wonder what it means.

So...I see my oncologist Monday morning, but I think the more important thing is to try to get in to see the orthopedic surgeon. I am coping by walking very, very carefully and holding on to things at all times, but if this continues to worsen, I'm in trouble.

Pollyanna moments:

I managed to choke down a few tiny pieces of a very nice rare prime rib that my sister's partner made for Christmas dinner -- rotisseried on the barbecue on the front porch.
We had Dad home for Christmas.
Tom and Robert's chocolate fudge!

Some relief!

2009-12-20T12:02:00.002-05:00

After the freezing from the nerve-root injection wore off on Wednesday night, my leg hurt as usual, but over the past three days the pain has diminished considerably. Yay! My leg still feels weak and I get tiny spasms all the time, something like restless-leg syndrome, so I still have difficulty falling asleep, but when I do I am able to sleep for six or seven hours with the help of codeine.

I went off the amitriptyline and the next day felt slightly more energetic and in a better mood, and my food tastes a little better, so I hope I can stay off that one. Still, when I go for a walk I'm moving at about half my usual pace, and I continue to have difficulty getting up the stairs.

Pollyanna moment:

Yesterday I found the energy to bake some Christmas cookies, so I didn't go to my brother's early-Christmas dinner empty-handed.
I still can't lie still for long periods of time, but I can get a little reading done here and there.

The root of the problem?

2009-12-16T15:30:00.003-05:00

This morning I had a nerve-root cortisone injection in the base of my spine in an attempt to resolve the sciatic pain that's been making me crazy. I've slept through the last couple of nights, but only because of heavy drugs. Not only does my leg hurt, but it's getting weak; I'm having trouble climbing stairs, and when I crouch down I have trouble getting up again.

So, since the injection I feel pain-free, but I've been warned that may be just because there's freezing in there. We'll see how I feel when it wears off. I'm actually putting my hopes on a placebo effect. Apparently, the procedure is diagnostic as well as potentially therapeutic; if I get some relief, then they know they've hit the right spot, and if they later decide to do surgery (the effects of the injection don't last) they know where to work.

I've just read some accounts on the Internet about people who had nerve-root injections and three days later had wildly increased pain! Oh, I should never have done that search.

The procedure wasn't very pleasant, but it didn't hurt much. The doctor was a student, which worried me a little, but as soon as she hit an obstacle, she fetched a senior radiologist, who guided her through the process expertly and in great detail. They inserted needles using an X-ray to guide them. Three times they hit something that hurt, and when I hollered, they asked if the pain was in my back or down my leg. The fact that it was in my back was good, I gathered; if it had been down my leg it might have meant they were damaging the nerve itself. The technician who assisted during the whole thing was a friendly and soothing guy; all in all, Jocelyn and I were impressed by the staff's kindness. And I, of course, was impressed that Jocelyn was kind enough to accompany me.

I still have no appetite. I do hope that I can start cutting down some more on these drugs. Reducing the amount of codeine I've been taking has resulted in some bouts of extreme agitation and jumpiness. I had an expert reflexology session two days ago and had to cut it short because I felt so antsy on the table I couldn't relax or lie still. I guess that's withdrawal.

Pollyanna moments:

Jay visited and serenaded me accompanied by his guitar. It had been a long time since I'd heard "Scarlet Ribbons" -- what a sweet song.
Although it's been very tiring to get through my seniors' writing workshop sessions, I've enjoyed them, and I've been impressed by my participants' hard work, and their patience and understanding when I'm not well.

Maintaining

2009-12-12T19:37:00.003-05:00

I'm not sure how to describe the past couple of weeks. I've hit a very low point in my life. The inability to sit or lie still because of sciatic pain in my leg makes it difficult to read or write, so this post won't be long. I've lost 25 pounds; it's hard to say how much is anxiety, how much is damage to my esophagus from the radiation treatments and how much is aversion to food because it's so hard to swallow. All I can eat comfortably are soft foods, and I have a raging thirst. Water is hard to drink, so I eat a lot of popsicles. I am still so exhausted I have to lie down after I climb a flight of stairs.

Pollyanna moments:

My book club friends met at my house and did all the setting out and cleaning up in the kitchen. It was a little overwhelming, but it helped to make me feel like I was in the real world.
When I went out to some medical appointments, I did a little Christmas shopping, moving very slowly, and that, too, made me feel like I was part of the world instead of just wearing a track in my hardwood floors all day and night.
Barbara Z. arrived at my door with a huge teddy bear, perfect for hugging.
Chuck put up my pathetic little string of Christmas lights in the porch and fixed my door lock.
Some of my coworkers showed up with wonderful soup from Whole Foods, and fruit popsicles.
Hugh sent me DVDs of The Monkees TV series.
Liz keeps cooking me wonderfully rich foods and driving me hither and yon. People have been so kind!

More good news

2009-12-03T21:34:00.002-05:00

Well, after scaring the pants off me for the past month, try as she might my oncologist could find nothing sinister in my scans that wasn't already there two months ago. All that's in my skull is a brain, and my spine is unchanged: dotted with cancer. Nothing in my liver or lungs.

As for why I feel so lousy, she agrees it's a combination of radiation side effects, too much medication and depression. She prescribes a vacation. And will probably start permanent chemo in January. She is encouraged that nothing is progressing, so although it's still incurable Stage 4 cancer, we're not at the death-is-imminent phase just yet.

I know I should be doing cartwheels about that, but if this is what "death-is-not-imminent" feels like, I sometimes wish it were imminent after all, because feeling this ill is not the way I'd hoped to end my days. However, here's hoping I'll feel a little better soon. I'm pretty sure the radiation is working; I've stopped taking Tylenol and cut back on the codeine. But the sciatica is driving me nuts and making it hard to sleep, I feel nauseated and woozy and everything I put in my mouth tastes and feels like cardboard.

I asked Dr. Lee if I had heard her correctly when she suggested that cancer would take advantage of compromised bone. Yes, she said. So, I went on, my taking Arimidex for two years, which may have caused my spine to collapse, may therefore have made my cancer spread instead of impeding it. She looked a bit stricken and offered only that there are now trials ongoing that have patients alternate Tamoxifen and Arimidex.

Meanwhile, I asked, should I keep taking Tamoxifen? We went through the usual debate about how much estrogen-sensitivity my cancer has, while I pointed out for about the third time that she was going to do a pathology review of my tumours, which she finally managed to locate. Turns out the biopsy of my lower spine showed no estrogen-sensitivity, but the tumours they removed from my armpit in January (which the lab didn't bother to even test until I bugged Dr. Lee and she bugged the lab in October) were estrogen-positive. So I'm glad I pushed to go back on the Tamoxifen. I think.

Whine over.

Pollyanna moments:

I can now swallow a mouthful of water without it coming out my nose.
I can now wear tons of clothes I haven't been able to do up in years.

Some good news for a change

2009-12-02T18:24:00.002-05:00

I saw the ear, nose and throat specialist again today (wonderful, wonderful doctor), and she says the CT scan of my neck shows nothing to be worried about. She examined my vocal cord again and says she thinks it's working a little better and would like to wait a while to see if the paralysis goes away on its own. Interestingly, she saw another patient recently who is undergoing cancer treatment and suddenly got a paralyzed vocal cord unconnected to the cancer, and she mused that something in the treatment must do something weird.

So I'm delighted about that, though I'm not sure how much longer I can stand not being able to drink water without choking. I nearly coughed up a lung yesterday morning as I worked my way through my gazillion morning pills. And here's something anatomically fascinating: the doc confirmed my suspicion that my recent inability to bear down -- meaning I don't have the usual oomph required to cough, shit, or get up from a lying-down position, or, I suppose, give birth -- stems from my inability to create a vacuum in my abdomen by completely closing my voice box (or something like that). Who knew?

The other question is: why did they radiate my neck if there is no cancer in my neck? I looked up side effects for neck radiation, and found out it causes the changes in taste I'm noticing -- sweet things taste bitter, for example. Apparently, the amitriptyline I'm taking for nerve pain leaves a bad taste in the mouth, too. It's not helping my appetite.

I finally gave in and bought six bottles of Ensure, chocolate flavour. The symbolism of having that meal-replacement stuff in my home is overwhelming; I associate it with imminent death. But there you go.

Anyway, I feel absolutely shitty, physically, but happy to get these results. Next step: tomorrow I'll see my oncologist and find out if anything weird showed up on my torso and brain scans.

Onward and upward....or sideways...or something.

One damn thing after another

2009-11-30T00:53:00.002-05:00

For many years, I suffered from sciatica, but only when I stood up; lying down and sitting brought relief. No drug ever did. Then, in early 2008, the pain in my leg went away rather suddenly and I had about two weeks of pain-free bliss. At that point (and this is probably what caused the sciatic pain to cease), my upper spine began its slow collapse and the pain between my shoulder blades began, culminating in my inability to walk a year later.

A couple of nights ago, I dared to think that maybe, just maybe -- could I even bring myself to hope? -- the radiation treatments might be working and my upper-back misery might be lessening. Was it just the medication doing its job? Was it simply wishful thinking? But wait, what was this -- a familiar sensation in my hip and leg but this time while sitting and lying down: sciatica! After nearly two years, it was like the return of a bad dream. Last night, I felt a little more certain that the upper-back pain was subsiding -- but the sciatica got worse. Then I noticed my entire right kneecap was numb.

It's now 1 a.m. and no matter what I do, I can't find a comfortable position, sitting, lying or standing. I can barely concentrate on writing these words. I'm on four different pain meds, and they're not doing a bit of good.

Why does it have to be one end of my spine or the other???

Meanwhile, getting those pills down is becoming harder and harder. Swallowing water just doesn't work, and I'm terrified of choking. I've begun coughing in the past couple of days, too, and I'm worried I'm aspirating food. My head's aching and I'm feeling thoroughly sorry for myself.

If this is the way things are going to go, maybe it's time to stop blogging!

Retail therapy: My Kindle

2009-11-27T11:01:00.006-05:00

The other day I felt so crappy, I decided I needed to exercise my consumer muscle and acquire a toy to cheer myself up. So, with many mixed feelings, I ordered a Kindle, which has finally become available in Canada, something like the last country on the planet allowed to purchase it. It arrived at my door less than 24 hours later.

My feelings continue to be mixed. The pluses that motivated me to use an e-reader are certainly there: no awkward holding a heavy or poorly bound book above my face in bed, wrist aching, pages turning unbidden; no trees killed for my reading pleasure; no additions to my already bulging bookshelves. I also bought a nice leather case in which it can stand upright on my kitchen table so I can read while I eat (normally a frequent and favourite pastime, though I'm not eating much these days).

But the thought of abandoning the physical book altogether makes my heart ache. Whenever I recall a book, I see it in my mind's eye, the design of the cover, the typeface chosen just for that book, the layout of the pages. Now, when I recall a book I've read on the Kindle, what will distinguish it from any other? Similarly, I tend to remember roughly where in a book a particular passage occurred, and can often relocate it based on that memory: about three-quarters of the way through, say, at the end of a paragraph in the upper right corner of the two-page spread. That's not possible on the e-reader, though the device makes it pretty easy to mark a page or highlight a passage even if a pen is not handy.

I also miss the ability to pass along a book to another reader, though I've always had mixed feelings about that, too, since doing so may prevent another sale for the writer.

And what about the sublime experience of book-shopping? Will I simply spend those browsing hours in Chapters or an independent bookstore, soaking in the gorgeous array of what's available, and then go home and give my dollars to Amazon? I guess so.

I now have a reputation in my family as the aunt who gives only books as presents, and I'd like to continue to do so, but already one other family member has a Kindle: I think I will miss the pleasure of choosing a volume for him, new and unique in its appearance, heft and smell, and I think I would miss receiving such gifts, too.

Still, I don't have room for any more books in my house. Or magazines, for that matter. I'm the kind of person who buys magazines to read long, grey articles; I don't respond much to the visuals. So for the most part, I don't mind reading magazines online. But, having worked in magazines for decades, I'm more aware than the average reader of how much goes into making magazines look beautiful, even down to my job of ensuring that the type has been laid out without great gaps or weird endings. Online, none of that matters; the shape of the type is endlessly malleable as you resize the pages for your own convenience.

Every so often, even I encounter an article that needs pictures to work: this week I read a terrific piece in The Atlantic (November issue), about the grassroots housing developments springing up in New Orleans, that wouldn't have worked so well without photos. Of course, in the online version, you can see even more visuals than you could in the print magazine, but I'm guessing the same would not be true on the Kindle version (which is why a single issue costs just $2.99); it doesn't have a colour screen, in any case.

Which leads me to the complaint I wasn't expecting to make: I find the Kindle screen a little unpleasant to look at because it's so grey. I thought it would be white or off-white or cream, like most book pages. As it is, I can read it just fine, but I have a constant nagging feeling that a light should be coming back on, like my laptop screen when it's dimmed for energy-saver mode. I had to laugh at Ian Brown's disparaging review of the Kindle in The Globe and Mail, in which he describes being surprised that he can't read it in the dark. I wonder if I'll ever get used to the screen.

What has surprised me is that I much prefer reading The Globe and Mail on the Kindle to my online subscription. The recent revamping of the Globe's website seems like a disaster to me: it's not nearly as easy to search as the old one; I get a less-comprehensive daily email notification than before, and half the time the links don't work; signing in has become confusing. But even without those glitches, an online newspaper works on hyperlinks and is continually updated, so although I may get linked in all kinds of interesting directions, I always come away from reading the "paper" online feeling like I haven't read the whole paper. Because I'm old-school, that matters to me.

But on the Kindle, the experience of reading the Globe is very linear. You can start at the beginning and click through every article in the paper until you get to the end, much as you would browse the physical item. (You can also access it by section.) My pre-Web soul -- my need for things to come in neatly delineated packages -- finds this satisfying, even though I suppose I'm missing out on the interesting distractions the Web version can provide.

Meanwhile, I have dozens of books lying around my house that I want to read, so I suppose the Kindle will gather dust, unless I feel so rich that I can spend the $12 U.S. to replace each paper copy with an e-version. Just my luck I'll recover fully from my cancer treatment and live to need my money! I may well, however, spend the three bucks it costs to get Jane Austen's entire oeuvre, which, I'm only a little embarrassed to say, I don't actually own in hard copy, and most of which, I'm very embarrassed to say, I haven't read.

More waiting....

2009-11-24T15:28:00.004-05:00

After five radiation treatments last week, I am experiencing the predicted fatigue, though not the sore throat. I can barely make it up the stairs. Who knows how much of it is the many medications I'm on? It's a terrible trade-off; I have only a little pain, and I can sleep quite well. But I'm so woozy. Meanwhile, I'm keeping one ear cocked for the phone, assuming that if the CT and MRI scans I had a week ago show anything scary, my doctor will call me at home. Waiting, waiting, waiting....

The numb pressure under my breasts continues, meanwhile, and swallowing is still a mini-ordeal. I'm afraid to weigh myself; the pounds are melting away. But I stopped taking the misoprostol, the drug meant to protect my stomach that gave me stomach cramps. My appetite is getting poorer and poorer as long as I'm upright -- when I lie down, I'm starving.

Last month, I finally took advantage of my prize for receiving the National Magazine Awards Outstanding Achievement honour: a photo portrait session with a photographer of my choice. (I waited until I had a little hair.) So I guess I'll post the best shot here. It's by Eden Robbins.

On a related topic: Kudos to my cousin Shane Brouse of Los Angeles (or thereabouts), who recently went to New York to pick up a silver Clio Award for his interactive website LiveWithIt.com. Good on you, Shane! (That's him on the left.)

Chunder road

2009-11-18T15:03:00.004-05:00

So, it's 5 a.m. and I stumble downstairs; I'm not in too much pain and I've been sleeping since midnight, which is great after two disheartening nights of pacing the floor. Still, I can tell the pain will grow and I'd like to sleep some more, and I haven't taken any pain meds all night. Yesterday I called the pain specialist and told him that not only is the new pill regime not working, but I feel nauseated, weak and generally yucky; he suggested going back to the Tylenol 3s (thereby upping my Tylenol intake again) and trying to keep tolerating the Elavil. The long-actor is to be taken every 8 hours -- I've chosen 7 a.m., 3 p.m. and 11 p.m. The original dose of Tylenol Extra Strength was every six hours, which was a little inconvenient, and the pure codeine was a top-up that could be taken within an hour of taking the long-actor. No matter what, I have to get up in the night to take something. Now, going back to the T3s, at every four to six hours, it takes some clever calculations to figure out how to make sure I don't take two T3s at the same time as the long-acting codeine. Confused? Try thinking about it in the middle of the night when you're on Elavil.

I've been careful to place the right pill bottles on top of the microwave and to put the wrong ones away, but in my stupor I take the long-acting codeine instead of the short, recording it incorrectly on my refrigerator chart, and then when I get up again at 7, I take 2 Tylenol 3s with codeine. At 7:30, after walking from the basement to my upstairs bedroom, I am so woozy I have to lie down. I get on the streetcar at 8 a.m. to go to Princess Margaret Hospital for my radiation treatment, and I feel a little hot and claustrophobic. When I get up to leave the car, I begin to sense I'm going to pass out; I manage to get across the street and have to sit down on one of the raised flowerbeds on the median in the middle of University Avenue. With my head between my knees, I throw up the smoothie I had for breakfast.

A nice man walks me to the hospital and I have my treatment, but after some more breakfast with a friend in the hospital Druxy's, I go back and see a nurse, who finds my vitals are OK and agrees that I've probably just OD'ed on codeine and that I'm taking so many strange drugs, my body is not faring really well. I've had a similar reaction to codeine a couple of times in the past (once when I took codeine pills for a hangover headache and probably still had quite a bit of alcohol in my liver).

But I've had two good evenings in a row, relatively pain-free, and a pretty good night, so I hope I'll have more of those.

The beautiful weather continues!

Seeking relief

2009-11-15T16:28:00.004-05:00

I finally saw a pain specialist on Friday: another instance of hearing one story from a confident-sounding resident and then another from the senior doctor. Still, they were nice and sympathetic. They ended up sticking with Tylenol and codeine, but in separate pills and different doses; I have a long-acting codeine and a short-acting one to top it up. The addition is Elavil (amitriptyline), an old-style antidepressant that also relieves nerve pain and helps induce sleep. The doc explained that the pain and numbness around my ribs are due to nerves being pinched at the spine.

I noticed a big difference the first night; the rib pain was much reduced and I slept quite a bit. But I'm still waking up with spine pain and having to get up to take more pills. And I'm feeling very dopey during the day. I didn't really feel like I was awake today until about 3 o'clock.

Had an MRI of my head yesterday; the technician, when I asked, told me that the dye he injected would not produce any side effects, but after he slid me into the tube, my mouth began to produce voluminous amounts of saliva. I had to swallow repeatedly and felt like I was drowning -- I almost pushed the panic button -- but I managed to stay put and the saliva eventually died down. I hope the swallowing didn't affect the picture. After I was taken out of the tube, I told the technician what had happened. "Yes, some people have that reaction; some even throw up," he said. Gee, thanks.

Being in the MRI tube, accompanied by what sounds like outtakes from a recording by an avant-garde electronica band, doesn't make me claustrophobic. It used to be, though, that I'd imagine being abandoned in the machine while the technicians were evacuated for a fire or the end of the world or something. Now, when I have to have an extended scan, I meditate, and the time goes fairly quickly.

Tomorrow I'll have a CT scan of my head, but before that the spine radiation begins: please, please let it have an effect. A positive effect.

Pollyanna moments:

We've had such beautiful weather this fall. Not too cold, sunny most of the time. It has a salutary effect on my mood. I remember the winter of 2002-03, when my friend Adele was dying, she commented at one point that the sun had not shone in six weeks, which we characterized as typical Toronto weather. I ended up suffering from massive depression and anxiety that winter, which I blamed on a lot of circumstances, but now that I think of it, the lack of sunshine couldn't have helped much, and it must have made Adele's life hellish. I've been thinking of getting some of those seasonal-affective disorder lights, though I have no idea which ones are the best. But I must say that the past couple of winters have seemed much sunnier than usual to me.
Rosie took over my kitchen yesterday and made me soup and smoothies and other good things.

Wetpaint is all wet

2009-11-11T13:20:00.000-05:00

A diversion away from cancer about lessons in the limits of collaborative technology:

As I've mentioned in this space before, when I was first treated for cancer six years ago, as a single woman living alone I went to some lengths to mobilize the goodwill of a large number of friends and acquaintances to help me through the experience. At the time I wished there were such a thing as a website to which multiple parties could contribute so that I could post online a calendar with my schedule and have people sign up to help me on a day of their choice.

Of course, by the time my cancer had returned, I had become familiar with such a tool, namely the wiki, which is basically a collaborative website that more than one party can make changes to. I found several uses for wikis: When I taught at Ryerson, I wanted a place where students could independently sign up for presentation times (rather than my posting a sign-up sheet on the door and then standing back as the students trampled me, pens in hand), and a place where they could brainstorm together on one online page. I also wanted a website for my book club that all members could contribute to. So, I went searching for just the right wiki.

I chose Wetpaint not just because it was free (they make their money only from ads). A couple of other sites I looked at charged a little for a premium service that permits private wikis; I wouldn't have minded paying, but Wetpaint offered private wikis for nothing. More important, to me, were Wetpaint's unusually attractive templates, including one designed especially for book clubs. I spent a lot of time setting up my wikis, and they worked pretty well, although I had to do a lot of persuading to get my book club members comfortable with the idea; not only are some of the members not particularly adept with computers, but they understandably worried about their addresses being posted on a public website. I assured everyone that I could set the wiki as a private one. Only those people whom I invited by email could join, and they had to set a password to get in.

When I got sick last January, I decided to use Wetpaint for the purpose I'd originally identified: to manage my "care team." On my invitation, friends and relatives could consult an online calendar I set up and offer assistance to fit with my schedule of medical appointments; if they wanted to, they could write offers of rides, etc., or other notes, directly on the calendar. I could indicate whether I needed help with anything in particular, and post updates on my treatments and how I was feeling. In theory, when I become too sick to handle the management of the wiki, other people could take it over and it would be even more useful. It also reassures my family, especially my mother, that I have friends to help out when they can't.

From time to time, invited members have told me that they were unable to register, or, once registered, unable to sign in to Wetpaint. I've just discovered this is more than just a glitch. The last person who had trouble registering got an error message saying that private wikis could no longer invite people to join. I was shocked and went looking for an explanation.

Wetpaint is not a big company with customer service you can call; most problems are resolved on message boards with moderators who seem to offer advice out of the goodness of their hearts. I found out by reading about this latest development that their hearts are not necessarily in the right place.

Evidently, private wikis are a pain for Wetpaint to maintain, so -- without any warning and, indeed, without notification of any kind -- I can no longer invite people to register to belong to one of my wikis. Worse, Wetpaint doesn't acknowledge that this is a problem at all; they don't frame it as something one can no longer do. Instead, they describe what is essentially a workaround: the wiki administrator can still invite someone to join the wiki, but the only way to do it is to send the invitation, then quickly change the wiki's settings to "public," then wait until the individual has registered, then change the settings back to "private." For whatever period of time that might be (the Wetpaint apologists -- I can hardly call them staff -- seem to think that process would take only minutes, but I've had people take weeks to decide to accept my invitation to join), the entire wiki would be open to the whole world.

Thousands of Wetpaint wikis are maintained by corporations, which use them to help staffers collaborate on projects involving proprietary information. The many complaints on the Wetpaint Central discussion board make it clear that the workaround is simply not an option. One user stated on the forum that he had applied for graduate funding based on a project that involved using a private wiki, and now will have to start again from scratch. But the Wetpaint people ridicule the suggestion that outsiders are likely to see any of the private information; they keep saying nobody is going to find it in that short time it's open, blithely ignoring the fact that a principle is at stake: a private wiki's administrator assures its members that the wiki is private and cannot then in good conscience open it up every time a new member wishes to join. This in addition to the extra work involved in monitoring every user's registration.

The discussion thread about this recent development at Wetpaint is an eye-opener, a perfect example of the ethos of the Wild West Web, populated by jolly volunteers and unpaid enthusiasts for whom the idea of customer service is a non-starter because there are no customers and there is no service (one supporter actually had the gall to say explicitly that we were not customers unless we paid for a custom domain name, so how dare we complain?). Wetpaint, host of thousands of wikis, is itself a wiki and by definition is only as good as those who collaborate on it. The "moderators" who respond to the complaints on the discussion thread are petulant and impatient: they seem genuinely puzzled and exasperated that, having stated the facts and explained the workaround, they are still being bombarded by complaints. In a normal business setting, managers would allow similar complaints to accumulate in order to measure clients' dissatisfaction -- I know many would cut them off at a certain point, but I've never seen any manager bully online commenters by implying they had no right to repeat a complaint that had already been made by someone else.

As the discussion unfolded, it became apparent that the main problem is the advertising-supported business model. The advertisers do not want their ads appearing on private sites, which limit the number of impressions they receive and also make them unrecordable. Furthermore, Wetpaint recently suffered massive staff cuts (it had a staff of something like 50).

I suppose the joke is on us "customers" or non-customers or whatever we are; the "information wants to be free" model mitigates against those of us who want both freedom and privacy. But it's been handled rather badly by Wetpaint, whose people are so immersed in computer nerd-dom they can't put themselves in the shoes of regular-guy users. The nature of this kind of Web 2.0 innovation is that many or even most of the heavy users are nerds, too. So when they discuss new developments on the user forum, they don't feel like they are businesspeople addressing customers; they seem to feel they are simply computer people hashing things out with other collaborators.

For example, here's one Wetpaint moderator:

The invite feature for Wetpaint was removed for various reasons. First off, I have have you know it is not "a bit more coding", it is a ton of coding to make the invite system for private sites. So, saying "it is a bit more coding" is a completely false statement.

Also, changing the permissions for a few minutes is not a big deal. Sorry if I sound rude, but it isn't a big deal. A very easy fix to having your students come on the site is during class, make the site un-private, and have all of your students join the site. Then, you can make the site private again. If anyone who is not a student of yours joins the site, you can easily ban them.

I am not a big fan of the removal of invites to private sites, but, there are many ways around this. I have already given you one solution, and you guys are smart people, so I am sure you can figure it out. I do not think making your site public for a few minutes will cause that much damage.

I don't blame these folks for being angry when their obviously thankless jobs are at risk, their workload is higher and they are slaves to a business model that can only piss off a substantial number (but, according to them, a small fraction) of users. But still...

Other commenters have noted that we should be pleased we can still have private wikis, which is true, but what's the point of a private wiki if I can no longer invite people to join without a lot of trouble? And it won't surprise me if Wetpaint simply eliminates the private option since it appears to be so much trouble.

So I am now in search of a new wiki host. Suggestions welcome. I am leaning toward Wikispaces. PBworks is another popular one, and it has gone completely in the opposite direction from Wetpaint by becoming entirely businesslike (they don't even use the word "wiki" anymore, instead talking about "solutions") and charging quite a lot. They are wise to stake out the corporate market, I think. They do offer a basic, free wiki, but I don't like its interface much.

Hoarse with no name

2009-11-10T10:17:00.005-05:00

It's been a tough few days. Last Thursday I thought I'd see the medical oncologist when I went in for my Zometa injection, but she wasn't there; instead I saw a nurse practitioner, who has a much more organized air and better communication skills than Dr. Lee, and who assured me she'd never seen anybody with breast cancer lose their voice for cancer-related reasons. She thought Dr. Lee was just being needlessly scary. However, when I saw the radiation oncologist later in the day, she confirmed that it could well be a metastatic lesion impinging on a nerve somewhere in my neck. So yesterday I went to an ear, nose and throat specialist, which resulted in more emotional rollercoaster moves.

Of course, I first saw a young resident, who stuck a camera down my nostril and made me squeak "EEE! EEE!" like a startled porpoise as he examined my vocal cords. I felt like I was trying to swallow paper clips. My mother, bless her heart, held my hand; what a wuss I am. Anyway, the guy seemed very confident and competent, and told me that my right vocal cord was paralyzed, which was causing the difficulty swallowing, and that it was very likely because a cancerous lesion is pressing on the nerve that supplies it. He added that that nerve would be in the top portion of my lungs.

I had been told in September that I had no metastatic disease in my vital organs, so the thought that it had spread to my lungs was, shall we say, dismaying. Young doc backed off a little when I told him about that scan, and went to get his boss, while my mom and I had a tearful little pity party in the office, with the door wide open to all who passed.

The actual specialist was also friendly and competent-seeming, but much more upbeat. She said that only the nerves to the left vocal cord went through my lungs; the ones on the right are in my neck somewhere.

Now, I can't explain why I find it less alarming that I might have metastasis in my brain stem than in my lungs. Perhaps because I was prepared for the idea it had spread up my neck, but not prepared for the lungs notion; perhaps because the radiation oncologist had suggested that radiation in my neck has a good success rate. I don't know. It was like the doctors were playing "bad cop, good cop." In any case, I was, perversely, slightly relieved.

I was more relieved when she stuck the scope down my nose, examined the vocal cord and announced that it wasn't actually paralyzed, just partially paralyzed. At this point I wanted to slap Young Doc.

Then she said that lots of people get this condition, which is called vocal cord paresis, for no good reason at all, just like some people get Bell's palsy for a few months and then it goes away. Sometimes the other vocal cord compensates, sometimes they have to perform a procedure that trains the bad vocal cord to work again. It's not necessarily an indication of cancer spread.

Still, what are the odds that I would get this out of the blue by coincidence, when in fact I have cancer progressing up my spine. I am having an MRI of my head on Saturday and a CT scan on Monday, and on December 2 I'll see Dr. ENT to get the results. Until then I just have to keep my fingers crossed and continue to croak, and to eat very, very slowly.

In the meantime, tomorrow I will have a planning session for radiation to my spine, which begins on Monday and goes for five days in a row. I may get a sore throat as a side effect, and the spine pain should subside within two to three weeks. If the cancer responds to treatment. And if all the pain is really coming from the cancer and not just my mechanical problems.

It does seem likely that the rib pain is from cancer, since it feels just like Dr. Lee warned me it might: like an increasingly tight vise around my middle. However, they are not radiating the ribs, just the spine (vertebrae T1, T2, T3, C6 and C7), in case the rib pain is simply radiating from the spine. I seriously believe there is a bone met right on my lower left rib which is causing the miserable pain just below, possibly pressing on my spleen (the nurse practitioner agreed), but when I tried to tell the radiation oncologist that, she rather patronizingly explained that she had other patients to see and in so many words suggested I should not go on about my pain.

A wonderful, accomplished friend was with me, and at that point she started to cry, possibly because she thought I was being dismissed, but I'm so used to that attitude from doctors I didn't even notice it. My friend said earlier, "You know, I'm not smart enough to get cancer," reeling at how much information I have to sort through and keep track of. And her father was a doctor.

I also have a metastasis on my lower sacrum near the left pelvis (that's where they took the bone biopsy sample, which was malignant), but they won't radiate that yet because it's not causing any discomfort whatsoever.

So...my mood has been shaky. It does feel like the rest of my life will be like a macabre game of Whac-a-Mole. I have experienced loss of hope for the first time since this all began, and trying to control the pain hasn't helped. Last Thursday the nurse practitioner agreed to refer me to the pain management clinic (readers of this blog may have noted that, despite my GP's commiserating with me recently about my not having been referred to pain management, he still allowed me to leave his office without referring me!). She said she wrote a dire letter because the waiting time can be quite long -- and suggested that in the meantime morphine would be better for me than Tylenol 3s. I guess she doesn't want me taking so much acetaminophen because it's hard on the liver and kidneys. I tried the morphine for three or four days, and it didn't really provide much pain relief, and left me feeling foggy and weak. It made the constipation worse, too. It certainly made me sleep -- like I was in a coma. I didn't like it at all, but I didn't have any Tylenol 3s left, only some pure codeine pills, which should be better for me, too, but they didn't seem to do the trick, either. So I managed to get my hands on more Tylenol 3s, and feel pretty good for about two and a half hours out of every four, plus I have to set my alarm to get up and take pills every four hours in the night. The T3s make me dopey, too, but it's a nice dopey rather than an "I'm dying" dopey.

Pollyanna moments:

My friend Liz brought over, among other yummy goodies, a homemade banana cream pie, which went down very well.
Diane took Mom and me to Rosetta McClain Park and the Scarborough Bluffs during that lovely fall sunshine on Sunday.
I did not beat Liz at Lexulous, but made a good comeback after her 99-point EPOXY!
Mom came along to my seniors' writing group, and also helped me rehearse some of the exercises.

Waiting game

2009-11-03T11:13:00.003-05:00

My gastro doctor called my oncologist and now she is concerned that the weirdness in my throat could be cancer-related and has ordered an MRI of my head and a visit with an ear, nose and throat doctor. God knows how long it will take for that to happen. (I was a little pissed when Dr. Lee suggested I should have called her about this ages ago -- I went to my GP twice and he didn't seem too concerned, and he certainly didn't suggest calling Dr. Lee.) The inability to swallow easily is not worsening but it hasn't been getting any better (though -- dare I say it? -- I think I am swallowing a little more easily this morning -- but maybe it's been like this every morning).

This development is upsetting, on top of the pain I'm dealing with, and I'm fascinated by the games I have to play with my mind to keep on top of my mood. I realize that the rest of my life, however long or short, is going to be like this: new symptoms that could herald further metastasis, more waits to have tests, more waits for test results, good or bad news. How do I live with this every day? I have to learn not to dwell on the unknown, to worry about bad news when it actually arrives and not before.

So I'm in great need of Pollyanna moments: The biggest one occurred yesterday when I met my seniors' memoir-writing group for the first time. It's a pretty small bunch, but they seem eager and excited, and so am I. Teaching is the only work I've ever done that takes me completely out of myself -- for the duration of a class my problems completely vanish from my mind. Despite my hoarse voice, I got through the two hours without too much trouble. In the past, the standing part of teaching was always problematic because I had sciatic pain for so long. Now standing is the only comfortable position for me, so physically I'm almost better suited to teaching than I ever was before.

I can still walk easily and I'm trying to make a point each time I do of really enjoying it, knowing how quickly the ability to walk could disappear.

Almost froze my butt off on Halloween night; we had about 125 kids as usual, and because my front door is up two sets of steps, I took up a post on the lower steps to shell out, sporting my fluorescent witch's hat, and it was bloody cold. It actually felt very Halloweeny: lots of wind blowing the leaves around in the gloom. I've noticed that my neighbourhood, a working-class area within the city that goes all out for Halloween, with music and sound effects and fake smoke, etc., is now home to a lot more young families than it was when I moved here 14 years ago; there was an unusual number of children under five being escorted by their parents (and they have a hell of a time getting up my steps, which is why each year I'm sitting farther and farther away from my house when I give out treats.) It appears that people stay in the small homes around here just until their kids get old enough for nursery school, then they decamp to a bigger place in the suburbs or a smaller city. Unlike some of my older neighbours, no one is willing to raise a family in a two-bedroom rowhouse anymore. As a result, dwindling numbers are threatening the local elementary school and we have very few older children living around here.

A couple of our ex-neighbours, who have since moved to the suburbs but miss the raucous Halloween on our street, dropped by to participate and it was great to see them.

The next day my family gathered at my brother's to celebrate my oldest nephew's 14th birthday, and it was the first time in a while that my Dad had travelled any distance to attend a family event. He was mightily confused, and the effort it took to get him there was onerous; I don't know if Mom would do it again. Still, he really seems to enjoy being around large family groups even if he is perplexed, and that's nice to see. He always did like family parties.

Top end-oscopy

2009-10-30T10:39:00.004-04:00

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

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

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

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

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

Well, I had wanted to lose some weight.

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

Pain trek

2009-10-24T10:51:00.009-04:00

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

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

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

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

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

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

NIghtmare on my street

2009-10-22T05:14:00.002-04:00

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

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

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

Pollyanna moments:

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

Pain, my friend

2009-10-18T10:41:00.005-04:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dr. Cynthia

2009-10-16T05:12:00.003-04:00

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

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

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

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

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

Pollyanna moments:

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

Report from the wee sma's

2009-10-10T03:13:00.003-04:00

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

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

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

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

Pollyanna moments:
Hmmm...

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

We interrupt this whine...

2009-10-06T04:52:00.005-04:00

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

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

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

Ups and downs

2009-10-05T06:44:00.004-04:00

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

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

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

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

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

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

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

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

A watershed day?

2009-09-30T14:34:00.003-04:00

Yesterday marked eight months since I had surgery on my armpit. And I think it marked the first day that I got definitive word that I have metastatic cancer, not just in my ribs but in my spine. I went to see Dr. Second, the hotshot orthopedic surgeon. He and his resident were very good to me, and, unlike my oncologist, displayed the actual CT scans I brought them and pointed out what has changed. Dr. Second told me back in the winter that he doubted I had cancer in my spine; he thought the evidence showed the vertebral collapse was in keeping with a mechanical problem, namely junctional kyphosis. But now there is sclerosis in the spine -- where my vertebra all looked black-ish on the film, now many of them look white. This, he says, means that there is bone-building going on, probably as a result of chemo and Zometa, which in turn means there was very likely cancer there to start with.

That is what Dr. Lee tried to tell me two weeks ago, but she didn't really make clear to me that she was talking about my spine -- she just read some of the report, which was Greek to me, and didn't show me any pictures. I just assumed the problem was only in the ribs, in any case.

I had a little weep in Dr. Second's office, but afterward I just felt relieved to have some kind of an answer. I guess my visit this Friday with Dr. Lee and the radiologist to review the films will drive it home even more clearly. Dr. Second was quick to add that there is a "good chance" of long-term survival with bone mets, and I have to concentrate on that.

He also implied that I might now require radiation to my bones, so I'm hoping to get an appointment with the radiation oncologist soon. She told me she really didn't think I had cancer in my bones and would not radiate until she had some definitive proof. Perhaps these new films will provide it.

In the meantime, for the past couple of weeks I've had a lot of rib pain; it's keeping me up at night, which is usually a sign of bone mets. It also hurts just under my left rib cage, and I don't know what that is. Lying down and sitting hurt the most; sometimes it hurts when I walk, though seldom enough to stop me from walking. Codeine seems to help, but it also makes me high. Dr. Second says I should stop taking the NSAID Naproxen, which I've had 1,000 mg of daily for about 10 months, because it will damage my kidneys. He says I should take Percocet! I can't imagine regular opioid use can be very good for me in the long term, either, but he seems to think it's preferable to the NSAID. God knows there are thousands of people walking around out there on big-time analgesics because they can't manage otherwise. Will I join their ranks forever?

Still, the question in my mind is: if my bones are actually getting better, why are my ribs hurting so much? Maybe I now know there is indeed cancer in my bones, but I still don't know how much of the pain comes from that and how much from my mechanical problems. It's probably both to some degree. Do I need radiation of my bones? Should I have spinal surgery -- would it make any improvement? Dr. Second warned me not to do it if I don't absolutely need to; there is a risk of paralysis and he's looking at more complex surgery than most fusions involve. He'd have to remove a whole vertebra, he says, partly in order to do a proper biopsy, as well as most of a couple of ribs. He'd fuse two or three vertebra, which means I would be even more inflexible than I am now.

How much pain is too much? I measure everything now against what it was like in the winter when my vertebra was fractured but not yet healed, and I could not walk for more than a minute or two. I guess just being miserable is not enough to warrant surgery, as long as I'm still ambulatory! At least when I couldn't walk I could get some relief when I lay down.

Next stop: the radiation doctor again. This really is turning into a full-time job. I can't believe a handful of people are still reading this blog; the merry-go-round I'm on, and may be on as long as I live, is getting mighty boring. I think it's time to start blogging about something more interesting, like the disintegration of my fingernails or the latest escapades of the raccoons in my backyard or the impact of the internet on daily newspapers ...

Some underused resources

2009-09-27T07:55:00.007-04:00

I'm slowly gathering more opinions on whatever the hell is going on with my bones. On Thursday I dropped by the Managing Your Cancer Journey course at Princess Margaret Hospital. I've mentioned it before in this space: it's supposed to be a two-day course on consecutive Thursdays, but because it runs perpetually it almost feels like a sort of drop-in group; when I went to the two parts, there were people there who had been several times before. Yet you can hardly call it a group because barely anybody attends (apparently, said the social worker in charge, no participants had shown up at all the previous two Thursdays). Which is a shame, because it's an opportunity to have some time with Dr. Robert Buckman, the renowned oncologist/author/broadcaster/comedian/atheist. It amazes me that such a busy man takes time most weeks to spend an hour with the group. His c.v. makes you wonder if he's spread a little thin and perhaps more of a star than a doctor, but he sounds very knowledgeable to me, and he's enormously engaging and personable.

Anyway, because there was just one other person there last week, and she's a regular and a volunteer herself, I got to spend an hour discussing my case with Dr. Buckman, without any actual facts and figures in front of us, of course; he had to base his thoughts on what I told him. I learned that it's very common for cancer patients to be told that spots on their scans could be bone metastasis or could be something else, like arthritis. Based on what I told him, he said I probably have bone mets, but that it's true that I may never know. My CT report shows "lytic lesions," which are basically holes in the bone. Buckman says they're usually caused by cancer, though it's possible they're not.

What was confusing about my recent visit with my oncologist, the one I call Dr. Lee, was that the report from my CT scan referred to "worsening sclerosis" in my bone lesions. She fretted that I would be upset by this wording, and was frustrated by the radiologist's choice of language; she tried to explain that "worsening sclerosis" is not a bad thing. Sclerosis, she said, means the lytic lesions are filling in, probably due to the chemo and the Zometa (bone-strengthening injections I've been having). Dr. Buckman confirmed this interpretation, but also confirmed that if the bone is showing signs of being fixed, it means there was cancer there in the first place. And because I never had a bone biopsy, I have no baseline to compare to. Still, he didn't recommend a bone biopsy -- said it's often not conclusive (not to mention extremely painful).

Dr. Buckman was pleased to hear that I'm taking the Zometa, which he says not enough oncologists are using. While it has long been known to rebuild bone, he said it's only in the past five years or so that they've learned it can also attack cancer cells. He added that I'm in really good hands with Dr. Lee, despite her propensity for thinking out loud -- said she was smarter than him.

The best news was that he contradicted the 20% figure I found in an online medical article, and says that 50% of patients with what is referred to as "bone-only" metastasis survive longer than five to seven years.

He also told me that it's worth my taking a hormonal therapy such as Tamoxifen even if my estrogen-receptor sensitivity is as low as 10%.

And he liked my idea of having a radiologist sit down with me and Dr. Lee to explain my scans, which is going to happen on Oct. 2, although apparently the radiologist I connected with deals only with spines and not ribs! Anyway, it's a start.

At a certain point, I'll have to give up on getting an answer, but not before I've exhausted all avenues. Dr. Buckman suggests I not make any big moves like selling my house or quitting my job for another year. Meanwhile, my rib pain has increased, especially when I lie down, and I am swallowing too much codeine (which I like too much). It almost feels like a twisted bowel or something, and along with my swollen breasts and armpit (the scans showed a large seroma, a post-surgical collection of fluid that, according to what I've read, should have been absorbed into my body by now; it's been eight months since the operation) and the numbness and pinching makes me awfully uncomfortable.

Pollyanna moments:

Yesterday my brother and his boys invited me to see It Might Get Loud, the film about guitars featuring The Edge, Jimmy Page and Jack White. It was a little long but great fun; Jimmy Page is now an unexpectedly healthy-looking old geezer, with a winning smile, and, as my brother pointed out, it was a hoot to see the worshipful looks on Edge and Jack White's faces as Page cranked out the riffs from "Whole Lotta Love." Sadly, the trailer gives him short shrift.
On Friday morning, I got on my bicycle for the first time in over a year and drove down to my special spot on Ashbridges Bay. It didn't hurt too much more than it does when I walk, but for the first several minutes it felt weird and disorienting to be going faster than my legs could carry me. It may be my only bike ride of the year, and I'm so glad I went. Lake Ontario is normally quite calm, but on Friday there was enough wind to stir up some mighty surf, and sitting on the rocks getting spray spots on my sunglasses as the sun popped in and out of the clouds like a hyper mole was just heaven. Just me and the lake and some ducks. I don't know how I could ever not live in the east end. And if it weren't for Ashbridges Bay, I doubt I'd have stayed in Toronto this long.

The new normal

2009-09-23T17:49:00.004-04:00

My mother bought me a subscription to Zoomer magazine, which I'm not overly impressed with (but thanks, Mom). I do read Libby Znaimer from time to time, though, now that we have a cancer connection. Her October column was one I could relate to: she dealt with how different the first experience of cancer is from subsequent occurrences. Going from being told "You're cured" to being happy with "No evidence of metastatic disease" is a leap only those who've experienced it can understand, I suppose. She describes opting not to ring the bell at Princess Margaret Hospital that's used to celebrate finishing a course of chemotherapy. Living with cancer, rather than beating cancer, becomes the new normal. "In my new life," she writes, "as a survivor [a word she admits makes her uncomfortable], there will be no bells, banners or noisy declarations of victory. Every ordinary day is a milestone." Gotta agree with that.

I am experiencing a lot of pain that spreads from my ribs into my abdomen, which I could live with more easily if I understood what causes it. Fingers crossed: I'm hoping to sit down with my oncologist AND a radiologist to review my scans. If my oncologist's secretary, whom I adore, figures out how to set it up.

Pollyanna moments:

I had my eyebrows threaded last Friday -- what a thrill to again possess eyebrows bushy enough to warrant threading! God, it hurts, though it's over quickly. I wish I could watch somebody else getting it done, because I've yet to figure out how it works. The women who do this work simply grab a length of thread, do something weird with it on your sensitive eye area, you scream a little and then it's done.
I'm actually kind of liking my Judy Dench–style ’do. But even at half an inch long, it's got a powerful wave in it -- although I'm tempted to keep it short-short, it would be interesting to grow it out and see if it's even curlier than it was before. A lot of people say their hair grew back different after chemotherapy.
I'm cranky because the weather has turned humid and cloudy, but, boy did I love the first three weeks of September -- cool, sunny, just my style.
I have lost enough weight to wear my rings again.

It's all relative

2009-09-17T20:27:00.002-04:00

More cancer "relativity." I saw my medical oncologist today. First she spent quite a bit of time giving me the results of the CT scan of my body. The good news -- very good news -- is that there is no cancer showing up in any of my vital organs. But the CT report was more doubtful about my bones: previous hot spots that had looked like cancer-caused holes now seem to be filled in, which may mean the chemo or the Zometa has helped, but also means it was cancer.

Then I reminded Dr. Lee that I also had a bone scan a couple of weeks ago, which she had missed; it didn't seem to show anything scary at all! On the other hand, one of the blood markers for cancer suggests there is/was cancer in the bones. On the third hand, the same people who read these films and reported on them did reports on my films from several months ago and completely missed that I had a collapsed vertebra. Which seemed so clear to me when I looked at the films myself, an eight-year-old could have picked it out. Sheesh.

The funny thing is that the doctor who did my bone scan said he would refer to the CT scan to help him judge the bone scan!

In any case, Dr. Lee is very positive about my situation, but she tends to be a Pollyanna and is reluctant to quote any survival statistics or tell me that I will or won't need my pension (and she suggests keeping the porta-cath in "for now"). I think she's worried about creating self-fulfilling prophecies and depression. Her optimism, combined with her propensity for thinking out loud, makes me come away as confused as ever. I have Stage 4 cancer; she agrees it's metastatic. My own Googling shows that only 20 percent of breast cancer patients with bone mets survive more than five years, and I have a couple of factors that could put me in the shorter-lived group (a blood marker called CEA and the fact that I'm mostly estrogen-receptor negative). But there are so many other factors involved that I can't really blame the doctor for being so equivocal. I've forgotten half of what Dr. Lee said; fortunately, she is one of the few doctors I've met who lets me tape our consultations, so I'm going to go over the recording again and see if anything becomes clearer.

So...relative to a year ago, I have an incurable terminal illness and that's still upsetting. Relative to what could have shown up on the scans today, I have every reason to be relieved.

Dr. Lee agreed I should be trying a little harder to lose some weight; her enthusiasm for this plan of action seemed bolstered by the fact that she's been fasting for Ramadan, which, she admitted, was also making her head a little fuzzy! She gave a brief pitch for fasting as my stomach growled. It may be too late when it comes to diet change; my high-carb, high-fat diet over the years probably contributed to my cancer in the first place. And there's a difference between diet leading to a primary cancer and diet affecting a recurrence of cancer. The research on individual types of food is pretty vague, but it seems clear that high calorie intake is associated with cancer, so...can I take this fact seriously long enough to go a day without chocolate? I wouldn't put any serious money on it.

In any case, Dr. Lee wants to take another look at the pathology of my tumours to see if I have enough estrogen-receptor positivity to warrant taking Tamoxifen or some other hormonal therapy again (the two biopsies I've had ranged from 9 percent to 30 percent ER-positive). I'm to continue the monthly Zometa injection to strengthen my bones. When my orthopod does an MRI of my spine, I'll get him to send a copy to Dr. Lee -- maybe it will clarify something. I read in the paper that the Ontario government is going to start paying for PET scans this fall, so maybe I can get one of those. And I'm considering taking all my files and getting another opinion from another medical oncologist (don't know who) or even another radiologist.

When I left the hospital (my friend Liz kindly accompanied me), I did feel relieved because it seemed as though not much had changed; I didn't feel like there was any new, scary thing to adjust to. But when I got home, I realized I hadn't truly adjusted to the old scary thing. During treatment, you really feel like you're putting everything on hold, including fear, predictions, plans. Tonight I feel as though I'm looking this thing in the face for the first time, with a clear head. From today, I am simply living with cancer, a terminal chronic disease. As for dying, a social worker at Princess Margaret who has also had cancer told me, "I'll worry about dying on the last day."

My last bout of cancer was all about denying the situation and changing absolutely nothing about my life, because I liked it just the way it was. That was my gift to myself. Now that my life is in greater jeopardy, and probably because I'm in my 50s and kinda worn out, for the first time I feel like it's time to make serious changes in my life, or at least in my priorities. Not sure what, or how, but life is now going to be about (a) staying alive, (b) enjoying myself, and (c) limiting myself to work I like and that allows me to address the things that matter to me (volunteering, for one).

Meanwhile, I'm taking a break from my anti-inflammatory pills and for the first time in a while my ribs are aching. None of this makes any sense....

Waiting...

2009-09-15T11:04:00.003-04:00

I'm in a weird place right now. The treatments are over, but my shoulder blade and ribs started acting up again a couple of days ago, making it hard to sleep. I think my sleep is also disturbed because of other stressors, not the least of which is my upcoming visit to the medical oncologist on Thursday to get my scan results. I'm more nervous than I realized. I'm pretty sure that rather than get really bad news or really good news, I'll just get more inconclusive news. We'll see.

In the meantime, I have decided to use the next while to work on the psychological, social and emotional aspects of having cancer by taking advantage of some of the many workshops and resources that are available to me free of charge as a cancer patient. I've been trying out the first level of the popular "Healing Journey" series, started up by Alastair Cunningham at Princess Margaret Hospital. It's intended to foster "an active response to the crisis of cancer," and deals with relaxation, living in the moment and all that Eckart Tolle stuff. Some of it seems a little airy-fairy, but it's good to get together with others in the same boat, and there is a small study showing that people who've followed the program have lived longer than expected.

I've also signed up for a 10-week program at Mount Sinai Hospital called "Taking Charge," which is about diet and exercise for post-treatment breast cancer patients.

Another perk that's available to me is referral to psychotherapists for three free sessions, which I'd like to try. And there are any number of other workshops and counselling opportunities through the Breast Cancer Survivorship Program at Princess Margaret as well as Wellspring, the network of cancer support centres. For example, I've signed up with the latter for a couple of sessions on returning to work after treatment.

Of course, as someone once said to me, cancer support entails support but it also entails more cancer -- more opportunities to be immersed in a subject you'd like to simply forget. But I think I'm at the stage now where I'm so thoroughly immersed that I just have to learn to swim.

Walking for Terry, June and me

2009-09-14T14:27:00.004-04:00

Yesterday the Terry Fox Walk /Run took place, and I participated down in the Beaches, along Ashbridge's Bay. I accompanied my neighbour Daryl and his family and some friends and neighbours to honour his wife, June, who died of lung cancer last year, and had walked in every Terry Fox walk but one since its inception. And to honour me, several members of my family came along: Mom, brothers, sisters-in-law and my niece and three nephews.

The night before, my shoulder blade started acting up again, for the first time in six weeks or so, and I slept only about two hours after taking codeine. So I was pretty dopey for the walk, but I managed the 5K I'd planned on, and raised more than $1,700. Here's me at the finish line:

Pollyanna moments:

We had a nice lunch at my place after the walk and my family brought me a chocolate cake.
My littlest nephew found a dollar in the sand and put it in a donation box.
The weather's been lovely.

Astral zapping

2009-09-10T08:47:00.004-04:00

My friend Neil was recently dreading minor surgery to remove a cyst, and, after asking friends to send him good vibes (he called it "astral zapping"), he was told the cyst had shrunk enough to make surgery unnecessary. I suggested I could use some astral zapping, so he sent me this doctored version of a photo he took while I was having radiation treatment:

I had a wonderful Labour Day weekend; my friend Hugh drove me up to Massey, my hometown. The weather was marvellous and we stayed at the B&B of my cousin Cameron McGregor and his partner Tanya Rouleau, called River House (I highly recommend it). It's just outside of town on the Spanish River, which was a real treat for me. I can no longer visit the river where my parents used to live, but not only is River House on an equally beautiful part of the Spanish, but Cameron's parents and grandparents live across the road, so I felt as though I was almost home. It was a bittersweet visit, hard to be there without my mom and dad. I was reminded of how, when I lived there, Massey seemed like a boring small town, but now all I see is how lovely it is, set at the convergence of two rivers. Here's a morning shot:

For the past months, while I went through treatment, I have managed to be pretty upbeat. Even when I felt like crap, the fact that treatment was ongoing allowed me to put fear of dying on hold. This week, the predicted post-treatment funk has set in, and I'm feeling a bit low. Thank goodness for the nice weather.

The small burn on my chest is coming to a head, kind of crunchy and a little infected. I hope it will clear up soon.

I'm done! A bit over-done, even...

2009-09-01T16:23:00.002-04:00

I completed my final radiation treatment today -- hurray! I'd intended to make a little ceremony out of tossing my hospital robe, the one that's been saved for me every day in a bag with my name on it at my request, but the housekeeping staff had already put it in the laundry yesterday. I left the hospital and stood on the steps a moment, not sure whether I wanted to jump up and down or have a little cry. So I took myself to the Elephant & Castle and had lunch, including a decadent brownie dessert they make, and told the waiter, who has served me numerous times, that I'd just finished seven months of cancer treatment and was giving myself a treat. (Don't know what excuse I'll use next time I indulge myself there...) He very kindly didn't charge me for the dessert and sent me off with best wishes.

My skin burns will get a little worse before they get better, but the saline compresses seem to be working well. I'll have to make them and use them for the next couple of weeks -- just boiled saltwater and a facecloth.

What's the next step? I'll have a CT scan of my whole trunk on Friday and a bone scan next Tuesday. I get the results on the 17th. Worst-case scenario: the cancer has spread to my liver or lungs. Confusing scenario: I still have spots in my ribs and they still don't know what they are, OR there are no spots on my ribs and maybe they were cancer and were banished by the chemo and radiation. Or not.

Soon I should be having an MRI of the parts of my spine they can see and a visit with Dr. Second.

Today my radiation oncologist agreed with a metaphor that I came up with: if I don't have bone metastasis (but will we ever know?), then what I have is a "regional recurrence" -- regional meaning not in the primary site but in the lymph nodes near it. So, the horse has left the barn, but it's standing quite near the door. It could lie down and go to sleep for a time; it could lie down and die (not likely); or it could go galloping away (which means I'm toast). Until I've had my tests, she'll make no comment on whether I should sell my house, retire, return to work, start spending my savings, plan for the future.

I feel frustrated and don't know how to proceed. In eight months I've gone from being told I had metastatic breast cancer to being told I might not, or at least not really; I've gone from stumbling around for months in shrieking pain with an undiagnosed broken back to walking with some ease. I'm learning to live with permanent numbness and nerve damage to my arm and breast.

We'll see what the scans tell me.

Pollyanna moments:

I've signed up to to walk in the Terry Fox Walk/Run in the Beaches on Sunday, September 13. I hope I can manage 5K. Right at the moment walking hurts the least; standing around the house or cooking or washing dishes makes my shoulder burn, and working at a desk makes it REALLY burn. If you'd like to donate to my efforts, here's the link.
I made myself an omelette this morning using half a dozen organic cherry tomatoes I grew in a container -- first time I've grown tomatoes! They were tasty.

Hair lip

2009-08-28T14:52:00.004-04:00

Several years ago, when my brother's boys were little, I was reading them a story as they sat at my feet. One of them stared cherubically up at my face, rapt by the tale -- or so I thought, until he wrinkled his nose and asked, "How come you've got fur on your lip?"

Well, the fur is returning, along with all my other body hair, slowly but surely. I've even had to dig out and dust off the tweezers. It's not all returning evenly, but rather in long, patchy strands. So far, I've got eyebrows where I don't like them but not where I do like them -- I'm still using the eyebrow liner. To my horror, I now have "fur" on my lower lip, in addition to the upper. Meanwhile, the hair on my head seems to be coming in much greyer than it was before. It's still very short, but at least it's covering my scalp.

I have two more radiation treatments to go and then I'm DONE. My skin has reacted much better than it did five years ago, but I'm still doing the saline compresses several times a day; I think they're helping keep the itch and burn to a dull roar. Today I had the technicians show me the complex diagram that illustrates what parts of me are being radiated, and I was surprised to find that they are doing my upper back -- the machine circles around and shoots me from under the table somehow. I panicked for a second because my orthopedic doctor said he wouldn't be able to fuse my spine if it were radiated, but the technician assured me that the beams are avoiding my spine. How that's possible, I don't understand. But now I know why my back feels so itchy.

I've been quite active recently, and walking is pretty easy, though the burning in my upper back is sometimes a bit much. And from time to time, I feel like I'm overdoing it and need to lie down for a while. I'm sleeping quite a lot.

Here's a photo of what I looked like getting radiated five years ago:

Pollyanna moments:

Wonderful to see some friends from abroad: Joan from Australia and Neil from Vancouver and Manila.
Took my 12-year-old nephew to the Art Gallery of Ontario; I hadn't been there since the renovation. I was heartbroken at what they've done to Walker Court -- a mishmash of styles -- but liked the wooden gallery overlooking Dundas Street. My nephew loved the chairs.
Enjoyed the Taste of South Asia festival last weekend, which was handily less than a block away from my house, of course. Sugarcane juice looks like murky green swamp water but it's very tasty.
Went to see District 9 -- great movie.

Green light

2009-08-18T15:01:00.002-04:00

Re: yesterday's post. I finally found out that the green beams of light in the radiation room are laser beams intended for positioning. The beam runs up my body and the technicians line it up with the tattoos on my chest -- like drawing a line with a ruler.

Because I hate the idea of wearing a hospital gown for 10 or 15 minutes every day and then tossing it in the hospital laundry, halfway through my treatments one of the technicians said he could put one in a bag with my name on it so that I could reuse it each day. And I chose one that kinda fits. But one of the other technicians wouldn't believe me when I asked for it -- wouldn't even look for it. I persisted and found it the next day.

This is what "interesting" has come to mean in my day! Preserving hospital wash water.

But after my treatment I walked over to the weekly farmer's market outside the Hospital for Sick Children and bought some Ontario raspberries. And took a pile of magazines to Toronto General -- I've exhausted all the waiting-room coffee tables at Princess Margaret. I'm starting to see some shelf space in my house.

My upper back is burning, burning, burning.

Absolutely radiant

2009-08-17T15:17:00.006-04:00

For those of you who've never had the pleasure, I'll describe what it's like to have radiation treatment. A typical course for breast cancer is 25 treatments, every weekday for five weeks (statutory holidays excluded). Sometime before the treatments begin, you have a planning session including a CT scan during which they position you on a table and take a bunch of measurements so that they can aim their radiotherapy beams at the right spots. Each treatment has to exactly duplicate the position in the plan.

When I had radiation five years ago, the positioning bit was time-consuming and even painful because my back problems got in the way; they wanted to radiate my breast without catching my armpit, but I'm so inflexible it was hard to do. Not only do they not want to radiate tissue that doesn't need it, but they don't want to preclude the opportunity to radiate it sometime in the future if it becomes necessary. I believe that's because they aren't supposed to radiate the same spot twice in one lifetime. This time around, it's going much more smoothly; when I mentioned this to my radiation oncologist and attributed it to the fact that this time they're radiating my armpit and not my breast, she said no, it was because they are better at it than they were five years ago. She told me with some excitement that my plan had been presented to a board or a committee or something, presumably as an example of something tricky.

They're not just radiating my armpit; they're also doing something called the supraclavicular area, which is between my breast and my neck, as well as a spot on my back. There are lymph nodes there that can develop cancer, which would not be good.

The setup at Princess Margaret Hospital is pretty smooth. I received a little card with a UPC label unique to me, and when I arrive in the department, I stick the card under a scanner until it beeps, which lets the technicians know I'm there -- I never have to speak to a receptionist. A computer screen tells me if my treatment unit is on time or running behind. The modern-looking reception area is equipped with comfy chairs (though they're arranged like an obstacle course), jigsaw puzzles in progress on coffee tables, as well as bins full of partly knitted scarves that knitters can pick up and continue. But the wait is never very long; I'm usually called in within five minutes, by a young technician proffering a robe that's large enough to fit three of me.

After I change, I enter the large radiation room when the "Beam Off" sign is lit up. A huge photo of a tropical beach hangs backlit on the wall. My plan states that I don't use the neck support, so they remove it from the table before I lie down, positioning my tailbone on a ridge in the table, almost the only uncomfortable part of the procedure. Every single day they ask me for my date of birth.

There's a CD player in the room, with a pile of CDs; most often they play some horrendous Muzak-y piano renditions of tunes such as "Babe" by Styx or Whitney Houston's "I Will Always Love You." Once in a while I complain and ask for something better and they put on a Motown CD, but I think some of the technicians prefer instrumental stuff so they can concentrate on what they're doing without distracting lyrics.

Two young and friendly technicians spend about five minutes getting me in the right position, measured down to the millimetre, literally. I remove my left arm from my robe and raise it so that it lies in an arm support and my breast is exposed. During my first appointment, I was tattooed with minuscule black dots on my chest -- so minuscule I had assumed the ones I got five years ago were gone, but apparently they could still see them. They make some more spots on my skin with a Magic Marker. One technician reads out measurements in centimetres and millimetres and the other adjusts me, the table, and other doodads. "Eighty-nine point five," says one; "I agree," says the other. In the dim room, narrow beams of green light crisscross my body -- I don't know what they are. But there's a sign on the wall that warns against looking at the sources of the beams, so I mostly keep my eyes shut. So that the radiation doesn't hit my chin, I have to keep it tilted up, which is the other mildly uncomfortable part.

When they're assured I'm in the right position, the technicians cover me up with my robe or a piece of paper, and say brightly, "Here we go." They leave the room to go to their posts at the computers that direct the beams, where they can see me on a monitor. There's a big round machine above me, and it starts to make whirring noises, moving around me in a circle. A high-pitched whine sounds when the radiation pierces my body, but I feel nothing at all. It takes about five minutes, and then the technicians re-enter the room and help me off the table. That's it. It's about as simple as a normal X-ray, though it's really a kind of particle accelerator, with much, much more power than an X-ray.

There's an easy-to-follow explanation of all this at a U.K. website called Cancerbackup, which I find amusing because in one spot, where they explain that certain types of cancer require the insertion of an internal probe, they use the term "back passage" presumably to mean "anus." Yikes. Anyway, luckily none of my passages, back or front, are being invaded.

Yesterday I was hit with serious fatigue, but it might just be the heat. My skin is starting to get a little rough and sore, but it's not too bad so far. I have 10 treatments left.

Pollyanna moments:

It's like an oven outside, but I've been able to keep my non-air-conditioned house relatively cool by keeping all the doors and windows shut and judiciously using fans.
I had a birthday cake at my brother Paul's last weekend.
I was able to spend a long while with my dad on Saturday, and we bopped around his room to Oliver Schroer's fiddle and a bunch of tunes by the Mamas and the Papas.

Old is the new old

2009-08-09T10:31:00.005-04:00

When I was about 17, I worked in a drugstore as a clerk. One day a little girl bought a chocolate bar or something, and her mother said to her, "Pay the lady." I looked around, wondering who she was talking about, and then realized the lady was me. It was a shock to be referred to with a distinctly adult term (disregarding the connotations of the word "lady" for a young feminist, which was a whole other story). A few years later, when I was about 20, a friend my age told me that an older friend of his had referred to me as "an interesting woman," and the putative compliment went unnoticed as I contemplated the fact that I was now a "woman" and not a girl. I think I squirmed a little, but also felt a tad proud, if a bit of an impostor. I may have been all grown up, but I didn't feel it.

Miraculously, I seem to have made it to the age of 52, but in the past few months strangers have taken me to be the mother of three different friends of mine, two of them older than I. And last weekend, someone assumed I was my mother's sister (not a rare occurrence, actually). The next day, I was walking in a park holding my father's hand when a small child on a small bicycle veered toward us, out of control. "Watch out for the old people!" shouted his dad.

I always knew that my mature appearance as a teenager, then an advantage, would eventually turn into a nuisance. In fact, I remember a nurse assuming I was my sister's mother when I wasn't more than 30 and she 25.

But I know that illness has aged me a great deal in the past year. (Please, no reassuring comments: I'm not fishing, just musing about the fascinating, if disheartening or at least bewildering, changes we all go through). And it's not just sagging eyelids and the usual wrinkles, and the middle-aged weight gain (I've actually lost 10 pounds since last year); my missing eyebrows contribute to the senior-citizen look. (At least the whiskers on my chin have disappeared for the time being.) Worse, I think, is the dowager's hump. Which leaves me with the question: should I have the spinal surgery if the pain is not debilitating? Will I be doing it mostly for cosmetic reasons? I have always had a superstitious conviction that any surgery I have in order to look better will lead to some catastrophe.

In the meantime, I have felt better in the past week than I have in a long time. The effects of the chemo have finally left my body (with the exception that my fingernails are looking weirder and weirder), and the effects of the radiation have yet to begin. I'm not out of breath, and my back feels much better again, and I'm able to get around the city independently in a way that makes me rejoice -- haven't taken any codeine in over a week. And the weather continues to be cool and relatively dry.

Pollyanna moments:

I got to meet oncologist, comedian, writer and famous atheist Dr. Robert Buckman, who leads a cancer support group discussion on Thursday afternoons at Princess Margaret Hospital -- he's a funny and funny-looking man with a real gift for supportive honesty. Though I did feel a chill as I stepped off the elevator to attend the group and realized I was in the palliative care unit where my dear friend Adele stayed for a while toward the end of her life. Surely I was not headed in this direction anytime soon, I thought; I feel so well! But I'm doing a good job of not looking toward the future anymore. It's like a blank to me.
I attended the final presentation of the weeklong children's circus camp at the Centre of Gravity circus training studio around the corner from my house. It was a hoot to see little kids on the trapeze, etc., including a certain young Natalie.
Stratford was a wonderful break, especially the Shakespeare Gardens, a picnic with friends and my mom on the Avon River, Colm Feore's wonderful Cyrano, and the muscular dancing in West Side Story. Also had a great picnic with my mom and dad in Waterloo Park in Waterloo, a lovely place I hadn't visited before.
Yesterday I got a huge laugh watching a squirrel running up a tree with a whole slice of pizza in his mouth.

Just now my neighbours and I all just stuck our heads out our front doors, mystified by the tremendous crash we just heard -- it sounded like someone's house had collapsed. But it was thunder, louder than any of us had ever heard, all the louder because it was preceded by not a single preliminary rumble.

Nuke that armpit

2009-07-31T22:49:00.002-04:00

Just finished radiation treatment number 4 (of 25). It’s going much more smoothly than I remember it going five years ago. I’m in and out in 15 minutes; so far no waiting. Last time I recall a lot of difficulty positioning me on the table, perhaps because they were doing a different part of my body, my breast. Because of my stiff spine, I believe the technicians had trouble aiming the radiation beam at my breast from the side without catching my underarm. As it was, they did manage to fry a little of the surface of my armpit (hence the current lack of hair follicles and sweat glands there). Considering that now the problem is in my underarm, maybe it would have been just as well if they had fried it. Anyway, maybe doing the armpit is easier, because so far the treatments are as simple as ordering a cup of tea. It is a little uncomfortable having to hold still in one position with my head tilted up, but it’s not for more than about 7 minutes. Meanwhile, I visualize a beam of pink energy zapping cancer cells and shredding them to atoms. A lot of good that did me five years ago, but I guess it beats lying there and thinking about the garbage strike or Iran or my dad’s health.

The people who give me the treatments are very cheerful young men and women, with the emphasis on young. They look like they just had their high school proms last week. I know I’m being bombarded with green laser-like beams that make the whole room look like Star Trek – I know because last time around a friend came into the treatment room with me and convinced me that the setup was bizarre-looking enough to warrant taking photos. Eager to do anything that would make us laugh, I agreed, and I have a whole roll of pictures taken with a LOMO camera of my half-naked body crisscrossed with green lines. Later one of my brothers took some photos, too; I apologized in case he felt embarrassed seeing my surgery-ravaged body. “I’ve seen worse scars on some strippers,” he said encouragingly.

I have promised myself that I will not pay a visit to a hospital without a load of magazines to place in waiting rooms, with a view to ridding my house of the stacks and stacks of them I’ve hung on to for years. Twenty-five trips to Princess Margaret should make a small dent.

Off to Kitchener to see my dad in his new home and then go to Stratford with Mom to see Cyrano de Bergerac and West Side Story. The shoulder blade pain has now spread to my breast, which aches terribly. Perhaps it’s wishful thinking, but I think I’m a little less out of breath this week, though I have dizzy spells whenever I lie down.

Alberta holiday

2009-07-25T13:23:00.006-04:00

Nearing the end of my Alberta vacation, I am finally catching up with the blog. There have been many Pollyanna moments; the weather is scorching, but it's pretty dry, so I can manage. It always amazes me that I can put a sopping wet T-shirt on the clothesline in Red Deer and see it dry in an hour, quite unlike in muggy Toronto.

In Edmonton, I stayed with Helen and Mitch, and the highlight, as always, was our lame attempt at singing old Dylan songs and other 60s classics with Mitch on guitar. We probably sounded like three drunken cats, but it was great fun. And while I was there I purchased and finished reading The Book of Negroes by Lawrence Hill. We also went shopping on Whyte Ave.; though I'm not a big shopper anymore, I've found that months of being mostly cooped up in the house has left me aching to browse and put down a few dollars.

Next I took a bus to Calgary and went to stay with Joan and Paul and their now-grownup kids in the foothills near Bragg Creek. They live in such a relaxing and beautiful spot amid huge conifers and a short walk (which we took several times) from the shallow, rushing Elbow River and its stony shores. While there I celebrated my 52nd birthday; it was a clear, hot day, and Joan and Paul drove me up to Banff, where I had lunch with Moira at the Banff Centre while they hiked. Then, as my birthday gift, we had a short canoe ride on the Bow River, me sitting in the middle like the Queen of the Nile (if the Queen of the Nile wore a fluorescent orange life preserver and a Tilley hat). The contrast between the hot sun and the glacial water was true Alberta. Afterward we had dinner in Canmore, at a restaurant I would recommend, the Rocky Mountain Flat bread Company.

Now I'm in Red Deer with Matt and Keith, where I indulged my shopping bug some more by buying, get this, a Tilley Endurables blouse, and a new Derek Alexander handbag (I am so not a labels person, but I am trying to fit in with the modern ethos -- I am of the generation of working-class girls who would never have thought to mention "who" I'm wearing because it was the "what" and the "where did you get it" that mattered, and I admit I sometimes laugh at my young friends who are so focused on designer names). Last night we waded in Sylvan Lake and ate Big Moo ice cream, and I've had some nice walks near the Red Deer River.

This weekend the children's theatre group of which Matt is artistic director, Treehouse Youth Theatre, has several performances as part of Red Deer's CentreFest street performers festival, so he's busy with that, and I'll head down there today or tomorrow. Other than that I've been playing Boggle and Scrabble and exercising my thoracic duct (laughing) by reading David Sedaris books. And I had a brief visit with an aunt of mine who is languishing, but physically healthy, in a long-term-care facility here in Red Deer -- she has frontal-lobe dementia, can't speak and knows no one. I think she's 71. But when I sang to her -- "Heart of My Heart" and "You Are My Sunshine" -- her eyes got big, she looked me straight in the eye, and she laughed heartily. It was a difficult visit, because I had just got news that my father, her older brother, who has a different form of dementia, is going into long-term care on Monday. He's only 74.

As for my health: the day before I left for Alberta I started having tremendous shoulder blade pain, which I think was stirred up by the lymphatic drainage massage, and I've been living on Tylenol 3s since I got here, sleeping poorly and unable to sit for long periods. Pretty miserable on that score. But I haven't had to take a T3 for the past 24 hours, and the discomfort is settling down to a dull roar, thank goodness. Meanwhile, I can walk pretty well on a flat surface, but the least little hill has me huffing and puffing like a steam train. Is it just being wildly out of shape, or has my heart been damaged by the chemo?

At least I can now taste my food.

Between treatments

2009-07-15T08:55:00.004-04:00

Feeling a little crappy today, although my mouth is no longer on fire and my tastebuds are starting to recover. Yesterday I had a lymphatic drainage massage, and my shoulder blade pain went away for a while, but towards evening it started to hurt more than ever and I had to take Tylenol 3s to sleep, which I've never had to do before.

Tomorrow I'm flying to Alberta to visit friends -- and in theory to escape Toronto humidity, but the biggest Pollyanna moments this month so far have been enjoying the un-Toronto-like weather: it continues to be cool and breezy and dry, with lots of warm sunshine. My house (which doesn't have central air but does have good cross-ventilation) is actually chilly at times. I have to laugh at all these weather reporters apologizing for the fact that we're not having hot summer weather -- if it were like this all summer, I'd be a happy camper.

It's a little odd being between treatments. I've linked before to the blog of Dana Jennings, the New York Times writer who has prostate cancer; recently he wrote (here; thanks, Donna) about how scary it can be when you're not having treatment. The lack of attention can make you feel like you're now at the whim of fate, instead of being "fixed."

But I start radiation the day after I return from Alberta: I'll be going in to be zapped every weekday from July 28 to September 1. I've been through it before, so I know what to expect, but this time it's a different part of me (my armpit rather than my breast), and we'll see what havoc the treatment wreaks with my lymphatic system. My recollection of the effects last time involve increasing fatigue as the weeks wore on, and then a couple of weeks lying on the couch holding a saltwater compress to my burned flesh. It was uncomfortable.

The body electric: Michael Jackson

2009-07-08T12:03:00.004-04:00

It's been a week since my final chemo treatment. My mouth is especially irritated, and I'll be glad when that clears up so I can enjoy food again. Perversely, I've been living on junk, looking for powerful flavours my mouth will respond to. That has to stop. Otherwise, I don't feel too bad -- a little tired, but not as shaky as I was a few days ago. Still coughing up a storm. Walked to the grocery store today. Blah, blah.

Yesterday I had a shot of Zometa, the bone-strengthening drug, at the hospital (it might make me feel crappy today), and had some blood tests while I was there. My white-blood-cell count was extremely low despite having had three of five Neupogen shots. I asked the doc whether I should have my blood tested again next week, but she didn't seem concerned. I also mentioned that my heart rate is a bit high (98) and one of the nurses suggested maybe I should have my heart tested again since I've had the heart-harming chemo, but again the doctor seemed uninterested. When I walk fast, my lungs seem to be able to handle it, but I'm still tired and out of breath -- is that my heart?

More interesting than the workings of my boring body: I spent yesterday afternoon watching the Michael Jackson memorial -- what a mass of contradictions and ironies. If I were 20 right now, I would probably have been one of the crying girls, with little control of my emotions despite a fascination with the cultural meaning of celebrity death (I was a mess when John Lennon died in 1980); if I were 45, I would probably be cynically decrying the tastelessness and the media-manipulated celebrity maw and wondering what the need for global mass mourning says about our age and why we're glorifying a very troubled man who didn't call himself "Bad" and "Dangerous" for nothing.

But at this stage in my life, I simply look at all the weeping kids who weren't even born when Thriller came out and the mothers and fathers who travelled to L.A. from afar and I acknowledge that there is so much sadness and pain in the world and such a lack of community that the need to join hands with others when a celebrity dies, metaphorically and in reality, seems understandable, if alarming. It's a tough world out there, and we need socially sanctioned outlets for the grief that we walk with every day. And we need to touch each other and participate in ceremony and seek good in the dark corners of the world. Still, you'd be hard-pressed to name an event that contained within it so much good and dark at once.

The memorial seemed respectful and subdued in some ways; I would love a funeral that combined speeches with musical performances, and I liked that a lot of the music was devotional. I don't have a problem with people commanding a stage at a memorial service, though Usher's self-regard was hard to stomach, with his sunglasses and his "it's all about me" attitude. John Mayer's guitar instrumental on "Human Nature" was a nice idea in theory -- I don't think I could have stood his singing, and the man who did sing the melody line in the background sounded wonderful -- but Mayer didn't seem like much of a guitarist (I don't know his work at all). I admit my eyes got a little damp when Mariah Carey opened with "I'll Be There," though I've never listened to a Mariah Carey performance in my life. Jermaine Jackson singing "Smile" struck a perfect note for a funeral, notwithstanding the image it invoked of its composer, Charlie Chaplin, an earlier social outcast for his supposedly inappropriate romantic choices.

I thought Martin Luther King III's speech was inane -- it's all well and good to go on and on about how his father maintained that we little people should be the best street sweepers and mechanics we can be, but what did that have to do with Michael Jackson? He truly was better at what he did than just about anybody in the world. Was King simply trying to make us feel better about the fact that we aren't as good as Michael was? Weird.

The speech I liked best was Brooke Shields'; because I was featured in a documentary called Fag Hags: Women Who Love Gay Men (hey, I just discovered that the whole thing can be viewed online here), I instantly empathized with the lament of a classic fruit fly who has lost her special friend. That I could relate to.

The ending was moving; was the weeping 11-year-old daughter Paris being used by the family to humanize her bizarre father? Perhaps. But it did the trick. I guess I could have done without it; still, I felt bereft when they took the gold-plated, rose-covered casket out of the building to the subdued instrumental strains of "Man in the Mirror," a song that has always choked me up a little. I wanted to hear Michael sing, but it was entirely appropriate that instead the camera focused on the lonely microphone stand in the empty spotlight. At that point, I didn't mind being manipulated at all.

I tried to purchase an MJ song on iTunes during the "show" to complete my playlist, and the system was jammed. But I completed the transaction an hour later. Life goes on.

Frequent flyer

2009-07-01T09:47:00.003-04:00

I had my last chemo treatment yesterday, but I didn't leave the Medical Daycare department with the fanfare with which I made my departure after chemo five years ago (hugs all around, cards and homemade cookies for the nurses). At that time, I guess I made myself believe I wouldn't be back there for a long time, and I did get five years. Mind you, I've been there to see my oncologist every six months, but at least I was able to avoid the chemo room.

But this time, it's different. For one thing, I'll be back there next week for a monthly injection of Zometa, the bone-strengthening drug (I had it a couple of months ago, and they forgot to keep giving it to me). For another, let me quote my favourite Medical Daycare nurse, Marlene, a somewhat sardonic and tough character with a marshmallow heart. Now that I'm a chronic breast cancer sufferer, I enjoy her probably long-practised lines that don't deny the reality I'm living with but put a distancing spin on it. When I asked if I would be getting my Porta-Cath removed soon, Marlene said, "You'll have to ask the doctor, but probably not. You're a frequent flyer now." In other words, I'll most likely be back and may need more chemo, and removing the Porta-Cath is complicated. Then another sweetheart of a nurse, Dorothy, told me of a man, a doctor, who had lymphoma and after his chemo refused to have the Porta-Cath removed because he was superstitious that the instant it was gone, the cancer would return. He ended up keeping it for five years (it has to be flushed every month, but otherwise isn't much trouble except cosmetically) until he finally decided to believe in his good fortune.

Dr. Lee wants to at least wait until I've had my radiation treatment and then a CT scan and bone scan (and I guess Dr. Second's MRI will tell us something, too) before deciding what's up and whether to remove the Porta-Cath. So I guess September/October will be the big reveal.

Meanwhile, my back is troubling me. Despite resuming my full dose of Naproxen four days ago, the left shoulder-blade pain is still pretty bad. I can walk fairly well (had a great half-hour power walk this morning, and, because I'm on steroids and it's cool outside, did not feel wasted at the end), but it hurts like hell when I lie down or sit. This is quite different from previous pain; the other different thing is that -- fortunately, or perhaps unfortunately -- it responds to Tylenol 3. I'm trying to avoid taking it, but it makes me feel great, so it's hard to resist. This morning the news is all about government efforts to lower the recommended dosage of acetaminophen, since people are overdosing on it all over (Globe and Mail story here), but I think I'm taking much, much less than the daily limit I heard one doctor say was preferable (2,600 mg as opposed to the current limit of 4,000). Anyway, I have some pure codeine pills without acetaminophen, so I can try those. And hope not to turn into a drooling codeine addict.

By Friday I will probably be feeling weak and tired, not to mention tingly (it's dawned on me that that happens not just because it takes a few days for the chemo to kick in, but because I'll have stopped taking the three-day cycle of steroids), but my mom is coming to visit so I can pretend to be a kid this weekend. Poor Mom. I was again diligent about keeping my fingertips covered in ice chips during yesterday's injection; doing that last time meant I didn't have any soreness in my fingertips at all. On the first round of Docetaxel, we didn't do the ice thing soon enough or correctly, and for two weeks it felt like someone had whacked each of my fingertips with a hammer. For some reason, though I haven't stuck my toes in ice, they seem to be fine.

Pollyanna moments:

My hair is starting to grow back!
I've booked a trip to Alberta at the end of the month to visit friends and rest in the non-humid climate before I begin my daily radiation treatments on July 28. And I've booked a two-day trip to Stratford with Mom and some friends to see Cyrano de Bergerac and West Side Story and stay in a nice B&B.
Happy Canada Day!

Blog to blog

2009-06-25T11:22:00.003-04:00

I don't follow many other breast cancer blogs, partly because they scare me. When the writer fails to post for a long period, one assumes she's died, or dying. Of course, it's possible that she's not posting because life is going swimmingly well, but I hate wondering. If and when the disease silences me, I hope I'll have time to tell someone else how to gracefully end this blog.

Occasionally I stumble on breast cancer blogs when I summon the courage to Google aspects of my illness, and I was glad I did this morning. Sort of. I came across this blog by Trisha Ekstrom (not updated for some months, alas) when I Googled "numbness" and "breast surgery," and found this passage:

I stand in the bathroom doorway, half dressed, trying to explain to Cary the funny feeling running along the back of my armit. The sensation is more pronounced today than on other days. It's like this numbness... It's tingly... It's not painful, but... I struggle to find the right words to explain it. Like your foot is asleep? Cary offers. Yes. That's kind of it. I don't like it...

Convinced I have lymphadema, (which I don't--lymphadema specifically refers to swelling of the arm), I grab two of my many books on breast cancer to peruse before going to sleep. I consult Living in the Post-Mastectomy Body first--a book I initially hated. (Sorry Lana. Keep in mind I at first hated Susan Love's The Breast Book too. In fact, I stomped on that one.) Right next to the section on lymphadema is a section titled "Numbness". I read avidly:

"You may notice numbness in the surgical area after your mastectomy. This can occur in a a very small localized area, or extend into the surrounding tissues. There is a major sensory nerve in the armpit and nerves in the chest area that can be cut or injured during surgery. It is usually described as a numb sensation, but that is not how my friends, clients, or I describe it. Numbness implies that all sensation in gone, but what I experienced after surgery was a mixture of numbness and an unpleasant feeling that was very uncomfortable, distracting, and annoying, but not exactly painful.... The numbness seems to come and go with changes in the weather and is influenced by how much the area is rubbed by clothing. I have noticed that fatigue makes it worse..." (pg. 41).

Yes! That's it exactly. Not only that, but it was raining and I hadn't gotten much sleep the night before. Now that the book has been redeemed, I make Cary come listen while I read the section aloud to him. Satisfied somehow to see a description of what I'm feeling in print, I can go to bed (as soon as I read the chapter on treatment for this discomfort).

That is it, exactly. It's a horrible feeling but not exactly painful. I went on to do more Googling and discovered scads of women with similar symptoms -- in some cases they went away, and in some they were permanent. Though I've come to accept that the lymph-node removal resulted in a lot of nerve damage (I can't for the life of me think why I didn't research this more before my surgery, or why my surgeon didn't fully explain it), I hadn't realized that similar sensations can occur when breasts have been removed, which has made me think twice about prophylactic mastectomy.

Trisha Ekstrom was part of The Scar Project, which I also discovered for the first time through her blog: a series of photos of partially naked women with breasts missing, breasts reconstructed, nipples missing, scars in full or partial view. They're beyond striking, often disturbing, sometimes erotic and sultry, always brave and beautiful (don't click on the link if this sort of thing is too much for you), and they made me feel stronger and less fearful, to my surprise.

Through Sitemeter, I can sometimes get a faint picture of those who find my blog when they Google various terms. As you might imagine, some fairly comical connections are made (somebody in Brooklyn found me by entering "burning armpits pleasure" into Google, and I get quite a few hits from people looking for images of Bif Naked since I posted one a while back). Others reassure me that I'm not alone in suffering my weird feelings ("sore numb armpit upper back pain," Googled somebody in Lake Mary, Florida).

Meanwhile, I'm feeling kind of shitty. Yesterday afternoon, though my cold is a fairly minor one, I suddenly got so weary I ended up sleeping all afternoon. I think it may be the heat.

Dr. Third recommends Dr. Second

2009-06-24T09:43:00.006-04:00

This is the week I'm supposed to be feeling not so bad, but I picked up a cold on the weekend, so I'm not 100%. My poor dad was the source of the cold; still, we had a really nice family Father's Day lunch, so it was worth it. And I've had worse colds -- despite research to the contrary, echinacea always seems to halt the progress of colds for me, and I always take it. It's been six weeks now that I've been coughing, however. In any case, I have more energy than I did last week and have been trying to walk every day. My back is behaving very well, but I mustn't push it.

On Monday, I made the pilgrimage out to Mississauga to get a third opinion from an orthopedic surgeon about spinal surgery. Dr. Third was very nice -- perhaps because I brought with me a lovely and generous woman who is a friend of a cousin and was operated on by Dr. Third for similar problems -- and overall he said the same things as Dr. Second did: I've got junctional kyphosis and compression fractures in my upper spine and spondylolisthesis in my lower spine. He says he's pretty sure it's mechanical and not cancer. He was a little more cautious about surgery, saying it isn't something to go into lightly, and I shouldn't do it unless I'm in serious pain. He agreed that the surgeon would take out as much of the steel rod as possible, and as for whether a "pedicle subtraction osteotomy" or a "Smith-Petersen" procedure (basically different ways of removing parts of the vertebra) would be called for, he said any surgeon would probably not decide what to do until he got in there. In fact, because the former procedure could cause excessive bleeding, they could go in and stop halfway through and resume at a later date! He said that once I'm opened up, anything could present itself, including a spine too osteoporotic to operate on.

But when I told him that Dr. Second sounded quite confident that he could help me, he said, "If he says that, then I'd believe him. I've seen him do amazing things." He told me that Dr. Second is highly experienced at this, even more so than he is himself. As for the first orthopod I went to, who was very discouraging about surgery, Dr. Third volunteered that that guy is not very experienced at all.

The experience thing is interesting: my brother has been going to Dr. Second for years, and putting off surgery because initially Dr. Second was discouraging about the odds of its succeeding. But lately, says my brother, Dr. Second has been more optimistic. I suppose that techniques have improved in the years he's been seeing him, but also his own skill has no doubt improved by leaps and bounds. Our biggest fear is that by the time we decide to have surgery, Dr. Second will have decamped to the U.S. like all the other good orthopedic surgeons before him.

Anyway, I'm experimenting with the Naproxen and will stop taking it again soon just to see if my back gets worse again. That will help me make the decision about surgery. Of course, just like a woman, I have to admit that despite the recent improvement in pain levels, I would most like to have the surgery for cosmetic reasons: to regain my lost height and eliminate that horrible hump at the base of my skull.

In the meantime, I'm again thinking about double mastectomy; more research to do.

Pollyanna moments:

My neighbour Daryl drove me to the appointment in Mississauga and later we got lost trying to find a particular restaurant he likes. But it was interesting to be driving somewhere I never go, even a leafy suburb.
Matt and I just used iChat to do a videoconference between Toronto and Red Deer, and I got to see all his house renovations and he got to see my backyard jungle. Plus I got to see his mom, which was nice since she recently had heart surgery.

Guilt

2009-06-19T10:20:00.004-04:00

It's been about 10 days since the last chemo treatment, and yesterday I started feeling a little human again -- more energy, less weakness, less burning numbness in my mouth and throat, less coughing. This round was not as bad as the last one, perhaps because I was given Neupogen for five days right away.

But the days of feeling like a dishrag have gradually made me seriously addicted to lying on the couch watching CSI and Star Trek while playing Solitaire or doing jigsaw puzzles on my laptop. There's a fine line between feeling sick, and being lazy and self-indulgent, and navigating that line is emotionally exhausting in itself. I feel guilty for wasting so much time on mindless non-activities but I feel even more guilty if I do something productive, because it leads to the question: "If I can spend the afternoon blogging and filing old photographs, why shouldn't I be working at my paid job?" That guilt makes it easier to choose laziness; if I'm not doing anything but lie on the couch and watch TV, then I must be really sick. I fear that if someone sees me walking to the grocery store or weeding my garden, they'll say, "Why is she collecting disability insurance?"

Would I simply rise to the occasion if I was compelled to go to the office every day, and therefore get better faster? So many people, without insurance, have no choice, although I believe research shows that cancer patients who don't take time off during their treatment are more likely to get infections, not complete their treatment, etc.

One of my brothers, who has a terribly painful back condition, is a stoic and I think he believes that to stop working is to give in and to put oneself in the unhealthy position of having to stay sick in order to justify one's disabled status and benefits.

The truth is, I am sick, but sick is a moving target that shifts from one week, day and hour to the next. Where I am in my chemotherapy cycle is a big determiner, but how I feel is still somewhat unpredictable. I've been puttering around the house this morning and even made a cake for someone, and felt almost normal, except for the steadily increasing numbness and tightness in my armpit and breast. Then I walked to the local post office (which, I discovered to my dismay, is closing down). A walk that normally feels like nothing left me ... I can't describe the feeling: I'm not really winded, though I am breathing a lot harder than usual, but my body just doesn't seem to respond correctly. It's heavy and doesn't want to move. It's like dragging weights on my legs.

It's one thing to say I could do a couple of hours of work each day, but not all days, and another to be capable of working full-time.

At least my back is allowing me to walk, as long as I take the NSAIDs; that's a huge improvement. I've been taking note on the couple of recent occasions when I've sat in a restaurant reading a book that I can't sustain that position for more than a short while before my shoulder blade begins to burn and ache, and I really wonder how long I could sit at a desk and copy edit a magazine.

Anyway, I must try not to worry about others second-guessing my level of illness. It reminds me of the days when I had severe sciatica, especially in my 20s, when I could easily run for the streetcar, but once I got on could not stand in one spot without terrible pain and sometimes came very close to begging someone to give me a seat. No one would have done so, of course, after watching me run for the streetcar. Disability is not easy for anyone to judge, sometimes even the person who's disabled.

And I've been cutting out some of the TV watching and reading books instead; just finished Love's Civil War, the letters and diaries of novelist Elizabeth Bowen and Canadian diplomat Charles Ritchie (one of those books that isn't 100 percent successful but whose last line is devastating and completely changes the way you view the whole book), and now I'm reading Barack Obama's Dreams from my Father and The Gathering by Anne Enright.

Pollyanna moments:

My house is still cool even though it's warm outside (I have no central air, so that's crucial).
Last Sunday afternoon, Diane and I had a lovely hour sitting on the lakeshore at Ashbridge's Bay, watching the geese and the blue water shining in the sun. But, because we cheated a little when parking Diane's car, we ended up getting a $105 ticket! We decided it was worth it.
On my walk this morning, I actually stopped and smelled some roses!

Self-pity and PET scans

2009-06-14T10:06:00.003-04:00

Apologies for that self-pitying rant yesterday. After all the excitement of the previous week, I think I crashed a little. I admit I am feeling isolated and lonesome, along with the fatigue, but I hope to get outside today and I know that will perk me up.

New topic: I'd be curious to hear from any Canadians who have had a PET scan for breast cancer. My medical oncologist is suggesting I have one, I suppose in hopes that it might finally confirm whether I have bone metastasis or not. But because it's not covered by medical insurance, a PET scan would cost me $3,000. The doc says she's been told that the technologists sometimes negotiate the price downward, but she can't confirm that. This article from breastcancer.org suggests that the test isn't very reliable, and my radiation oncologist didn't seem very enthusiastic about doing one. Other articles I've read suggest that the PET scan doesn't pick up breast tumours very well, but it can detect spread in the bone and elsewhere. This one seems hopeful, but it doesn't have a date on it! God, that makes me crazy.

Meanwhile, will Canadian government fuckups over the production of radioactive isotopes at Chalk River prevent me from having a regular bone scan when my treatment is done? They really dropped the ball on that one; it's shocking.

80/20

2009-06-13T08:47:00.006-04:00

Right on cue yesterday morning the side effects of the Docetaxel kicked in, though not as heavily as last time. I'm very tired, feel numb and tingly all over and have a big lump in my throat. I want to eat all the time to drive away the taste in my mouth, although it's hard to taste my food. The home-care nurse came this morning and started me on another five days of Neupogen shots -- apparently I'll have them as a matter of course since my white-blood-cell count went so low on the last round.

On Thursday, I went to my radiation oncologist to discuss the next stage of treatment, which will start at the beginning of August, after I've had a month to recover from chemo. She feels less and less inclined to think there's cancer in my bones, and she's only going to radiate my armpit for now. "Bone mets aren't life threatening," she said, "and if there are some later, we can treat them later." Bone mets may not threaten my life themselves, but -- I thought, but didn't say -- they're a sign that your life is being threatened.

Still, I made the mistake of asking her what my chances are of collecting my pension; though she declined to give an answer to that specific question, she gave me worse odds than I'd expected: I could swear that my surgeon told me some months ago (to my surprise at the time) that, with chemo and radiation, there was an 80 percent chance the cancer would NOT spread further; this doc said it was 20 percent, so I guess I got it reversed. And that's only if there are no bone metastases. If the cancer is in the bones, there is no cure, for sure. In any case, she reiterated that this cancer is aggressive and serious, and everything rides on the chemo and radiation since it's not sensitive to any hormones or proteins and therefore there are no long-term drug therapies for me.

Actually, I had initially assumed that as long as the cancer was in the lymph nodes, there was no cure, so I suppose I should be happy there's any chance at all that it won't return, even if 20 percent isn't very promising. The ups and downs of this diagnosis have made it hard to plan what's left of my life. But I guess we're all in that boat to a greater or lesser extent.

The radiation doc said she doesn't think I have lymphedema since my hand isn't swollen, but sympathized with the breast swelling and discomfort I've been in since the surgery. She says there's a five-percent chance I'll get lymphedema from the radiation.

Pollyanna moments:

The weather is nice, though I'm mostly lying on the couch in a windowless room. I managed to do a little weeding in the front garden yesterday morning until my back gave out, and it was lovely to scratch around among the thyme, which looks like it's dying but still smells great. I've been reading Vanity Fair this morning, and envying Johnny Depp his yacht in the Caribbean, as I look forward to a long, isolated, urban summer. But though I occasionally fantasize about getting out of the city to some exotic destination, what I mostly long for is to visit my ageing aunts and uncles in the places I call home: Massey, Manitoulin Island, Pembroke. I miss them, and treasure the visits I made there in the past couple of summers. My trip to Manitoulin with my parents and brother last year was heavenly, both because it's a magical place and because it was probably the last time I got to sit around with my mom and dad and aunts and uncles and sing old songs to the fiddle and the harmonica.

Speechifying

2009-06-08T11:22:00.004-04:00

OK, so here's the text of the speech I made accepting the Outstanding Achievement Award from the National Magazine Awards Foundation:

June 5, 2009, The Carlu, Toronto

Thanks, Maryam [Sanati, editor-in-chief of Chatelaine], for that kind introduction. I always said I’d be able to tell people one day, “I knew you when…”

When Patrick Walsh telephoned me to say I was being given the Outstanding Achievement Award, I rather gauchely accused him of messing with my head. It’s an enormous honour to be included in the list of past recipients, about 10 of whom I’ve worked for at some point over the years. People like Bob Fulford, John Macfarlane, Peter Newman and Barbara Moon, whom, sadly, we lost just a few weeks ago, taught me so much of what I know about magazines. The other day I was reading Diana Athill’s book Stet about her 50 years in book publishing, in which she said that as a copy editor she was one of the “humbler but still essential people who tidy texts.” For much of my career I have been proud to be simply a text tidier for those illustrious bosses of mine.

Then I recalled the first time this award was given, in 1990. The Foundation chose at that time to honour Prue Hemelrijk, a legendary fact-checker. At the time I was thrilled that we were recognizing the contribution of one of those “behind-the-scenes” magazine folks, someone whose career was devoted to research, accuracy, and the kind of attention to detail that elevates magazine writing, in my opinion, above other genres. And although I’m also a writer and an educator, in giving me this award, the Foundation has chosen again to send the message that fact-checking and copy-editing, which have comprised a large part of my career, are vital to magazines, are indeed a large part of our currency, what we offer the people who buy what we have to sell. In other words, magazine readers love magazines because their texts are tidy and what they say is true.

Fact-checking and copy-editing are often referred to as junior editorial skills. Prue Hemelrijk and I are just two people who belie that definition. I am junior neither by age nor by years on the job. It’s true that copy-editing and fact-checking are excellent training grounds for interns and new staff. But magazines with high standards also call upon wisdom and experience for this important task. By giving me this award, you are honouring a host of other checkers and copy editors who uphold these standards. I’m talking about people like – and I’m going to miss some here – Veronica Maddocks, Eileen Whitfield, Geri Savits-Fine, Charles Rowland, Dawn Promislow, Catherine Dowling, Brenda Thompson, Ruth Hanley, Barbara Czarnecki, Pam Capraru and so many others, many of whom are also excellent writers and creators and editors. I’m talking about people who are earlier on in their careers, like Megan Giffith-Greene, who are also doing a great job of helping writers in their task of getting everything right.

Apparently Prue shared with the world her most embarrassing moments as a text tidier, and perhaps I should do the same. Typos on my watch have mostly made people laugh, and I like doing that almost as much as I like getting it right, so I confess I’m not kept up at night by mutual funds defined as a professionally managed pool of asses. I did lose some sleep when Bob Fulford wrote a profile for Toronto Life of Holy Blossom Temple and I let a pullquote slip that called it Holly Blossom.

But I lose even more sleep over the future of magazine copy-editing and fact-checking. I don’t know whether people who decry apparently sliding standards are just Chicken Littles. Maybe that’s just what we do. But I know the pay rates for fact-checking are sliding. And as the editorial staffs of print magazines inevitably merge with the online sides of those magazines, I wonder which side’s standards will prevail. I urge those of you who have something to say about this to pay attention to the care and time and effort that has, after all, distinguished magazines in the first place in the minds and hearts of our audience.

I tried to leave the magazine business. Several times. I could never quite make my escape. In the end I kept coming back to it for one reason. My writing has often focused on the idea of community, and what I found in the magazine business, even on those days when I wondered why the hell I was sticking around, was a community. Tonight is the best evidence of that. I’ve been coming to this shindig for nearly 30 years, missing very few, and I’ve always been amused by the uneasy mixture of cynicism that magaziners fall prey to and pride in our accomplishments – the mixture of competitiveness and camaraderie -- that the Mag Awards typically mark. Today we are undergoing profound change intertwined with economic struggle, and what our industry will look like in a couple of years is a troubling mystery. I believe it is all the more important – not less important -- at this time to celebrate ourselves and to gather for a night like this – to reaffirm our sense of community in the face of obstacles – and I commend people like Kim Pittaway and Brian Stendel and D.B. Scott and all of the individuals they mobilized to contribute financially so that tonight could happen.

I want to thank the Foundation, its board members and the people who wrote letters supporting my nomination. I want to thank the many students and interns I’ve had the privilege to work with over 21 years of teaching. You’ve taught me all about learning, which is the most satisfying thing any of us can ever do. Finally, I’d like to tip my hat to my cheering section here tonight, a group of amazing people who have been helping me through my cancer treatment.

Thank you, thank you, thank you.

Pollyanna and the City

2009-06-07T11:46:00.006-04:00

When my oncologist suggested that I postpone my chemotherapy treatment by one week so I could attend the National Magazine Awards gala at which I was to receive the Outstanding Achievement Award, I was a little skeptical: should I endanger my life to pick up a plaque? Then she added that I would benefit from the emotional high that would ensue from having a fun night and being the centre of attention; she said it would boost my immune system and make the chemo work even better. "We don't pay enough attention to the psychological and emotional effects of such things on our immune systems," she said. I was even more skeptical.

But I believe her now. I have had such a great few days, and I'm sure it's helped my health. Joan D. flew out from Calgary on Wednesday and we attended a dinner party with some of my old Ryerson classmates at Liz's, which was fun. On Thursday, Joan and I rested in my backyard -- the weather has been sunny, dry and not too hot, my favourite kind -- and went for a short walk to the local coffee shop. My back is behaving better since I resumed taking the Naproxen, and as far as chemo effects, I am feeling almost human again, despite a hacking cough.

On Friday, the day of the gala, Mom and Rosemary arrived from Kitchener, and we had a girlie afternoon; I decided to wear my sparkly Indian lengha and to go completely bald instead of wearing the wig. To enhance the effect, I had a neighbour of mine come over and do my makeup -- not just any neighbour, but Diana Carreiro, who is a top makeup artist with The Artist Group, and who is featured in that award-winning "Evolution " video from the Dove Real Beauty campaign (you can't see her face very clearly, but it's her doing the makeup and hair). She does a lot of charity work, including for Look Good Feel Better, and I was thrilled to be the recipient of her largesse. The makeup made a big difference, I think. With a bald head, as Diana said, it's go big or go home. It felt like a lot of paint to me, but Diana told me that when she did Sophia Loren's face at the film festival, the actress wouldn't have left the room with as little makeup as she put on me, so I guess it's all relative. Anyway, I think it worked.I had a table of 10 friends with me at the gala, which was held at the magnificent Carlu -- women who've been unbelievably helpful to me during my illness. My award was the first one -- I think the organizers planned it that way in case I didn't feel well enough to stick around. But I felt pretty good, and ended up staying the whole night. I'm sure adrenaline helped me stand upright, but the right drugs and having time to recover from the chemo was the key. It was a magical evening. Maryam Sanati introduced me, and made me blush. Worse was the gale of laughter that went up around my table when Maryam repeatedly noted how "quiet" I am. Not sure what she meant by that! It's not an adjective most people who know me would use. Nevertheless, I was moved by her kind comments.

My own speech was a little on the long side, and I rushed through it, but I think it went over well. I took a stand for those of us who do the behind-the-scenes work of fact-checking and copy-editing, decrying sliding standards as magazines migrate to the web. Quite a few people came up to me later and said I'd made them resolve to do better. It's probably a futile quest, but I had to use the opportunity of having a platform to speak my mind.

I was well aware that I had been selected for this award partially as a representative of all the unsung people who do this kind of work, and the best part of delivering the speech was the opportunity to name as many of them as I could, and to hear the crowd cheer after each name. That was special. Perhaps I'll post my speech in a separate entry.

I wasn't nervous, but when I finished reading the speech and started down the steps in front of the stage, Maryam had to grab my arm because my legs simply turned to water and began to shake. I guess it was an adrenaline response.

My "Doris & Me" story didn't win anything, but I didn't expect it to, so that was fine.

Anyway, it was great to see lots of colleagues and to feel like a human being, let alone a celebrated human being. The next day, Mom went back to Kitchener (my sister was kind enough to look after my dad for the night so Mom could attend, for which I was really grateful; my Dad is aware enough to understand that I was receiving an honour, and I've saved a sweet phone message in which he congratulated me in his halting voice). Diane, Joan and I had breakfast at the local greasy spoon, and last night Joan and I went for dinner at Gio Rana's Really Really Nice Restaurant, a hidden Leslieville hot spot in what used to be my old branch of the Bank of Montreal. The food there is wonderful -- kind of neo-Italian, and they serve small plates that combine to make a splendid meal -- and I had a glass of wine for the first time in months.

It sounds silly, but I felt as though all those episodes of Sex and the City I watched last week when I was so sick had come alive for me for a few days (minus all the relationship angst -- thank God that's all behind me). The memories will help me as I head into round five of chemo.

Encouraged

2009-06-02T07:46:00.003-04:00

The most difficult thing for me to handle when it comes to my health is not knowing what's causing my symptoms. I'm far too controlling and self-absorbed to handle the fact that the human body simply throws more and more weirdness at us as we age, much of which will remain a mystery. If I don't understand what's happening to me, I feel anxious.

So I was relieved after my long-awaited appointment with Dr. Second yesterday, the orthopedist I last saw in February. First of all, he was still confident that he can successfully operate on my spine. More reassuring still, when I got a good look at my X-ray, taken from the side, it was really obvious why my upper back hurts so much and why I've got this ugly hump there now and why I've lost an inch and a half in height. The metal rod is still aiming skyward, but my spine has curved so far forward that it's amazing the rod hasn't come right through my skin. Any wonder I hurt so much! Still, the doctor agreed that the pain lessened a few weeks ago because the fractures healed and there is a bit less movement there. And last night I concluded that the reason I've been in more pain this past week is that I stopped taking the NSAID. I may start taking it again today. Reasons, reasons: that's what I need.

Dr. Second was in a great mood, to my surprise. In the past I've found him a bit arrogant and humourless, but then I've mostly seen him with other men around; last time Jay came with me, and there have always been young male surgical residents in the room, too. This time I was with Jocelyn, and the doc was accompanied by a female nurse practitioner. In any case, unlike all the folks at my usual hospital, who insist I can't have an MRI because of the metal in my back, he says he can take an MRI of my spine, after my radiation treatment is done; it may not be a clear picture around the rods, but he'll be able to see some parts at the top and bottom. He says he will assess the situation at that time and we can decide whether some repair is needed in my lower spine as well, which he can do at the same time (more dangerous, and it would diminish my ability to tie my own shoes) and we will decide whether to simply fuse the upper spine (pretty safe) below the neck, or to remove the broken vertebra as well (which will, oddly, restore more height, but is more complicated). He had told me before that the vertebra removal is called pedicle subtraction osteotomy; he seemed a bit reluctant about it this time, and suggested another procedure called a Smith-Peterson osteotomy, which is somehow less invasive (I don't understand how).

Depending on what he does, the surgery could be up to six hours long. He says he might not be able to do a biopsy if he doesn't do the osteotomy, so I may never know if there was cancer in my spine (he doesn't think so). He says he usually recommends patients donate their own blood in advance of surgery, but in my case it's not a good idea because of the cancer. Apparently, they also usually recycle a patient's own blood during surgery, and I won't be able to do that, either. So I'll need a big blood transfusion.

I told him I was going for a third opinion from Dr. Third in Mississauga, and he agreed that was a good idea and assured me that Dr. Third is very skilled at this, as well. So I know I've found the right doctors for the job.

The idea that I might be able to get my upper back straightened out -- for pain reasons and cosmetic reasons -- lifted my spirits. But I know too well that as often as not these procedures fix one thing and screw up something else. Still, I am going to call today and book the MRI for September and the surgery for November. I can always cancel. Dr. Second does not recommend being in a hurry to do the surgery; he wants me to be fully recovered from the cancer treatment, and says if the pain does not impede my lifestyle, I should hesitate. We'll see. At the moment, I still cannot imagine leaning over a desk for any length of time.

In the meantime, I am coughing up a storm and still feeling pretty miserable, though I'm walking better than I was on Sunday. But, based on reports from others, I have concluded that this cough is a result of allergies -- I don't usually get this in the spring, but I sometimes do in August. Once I get a post-nasal drip going, it's not long before it turns into a deep, hacking cough. And my coughs last forever without treatment. I guess I should drag myself to my family doctor.

Pollyanna moment: Diane and Jill took me to the Royal Botanical Gardens on Sunday. I had to be in the wheelchair the whole time, and didn't feel very well, but I really enjoyed the beautiful "Lilac Walk," the largest collection of lilacs in the world. It was peaceful and smelled heavenly.

Discouraged

2009-05-31T09:57:00.002-04:00

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...

2009-05-25T15:17:00.003-04:00

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

2009-05-20T09:48:00.002-04:00

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

2009-05-16T10:02:00.004-04:00

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

2009-05-15T08:33:00.000-04:00

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

2009-05-14T10:07:00.010-04:00

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

2009-05-13T08:29:00.003-04:00

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

2009-05-08T14:57:00.003-04:00

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

2009-05-01T07:47:00.008-04:00

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.

What this is like

2009-04-28T08:45:00.003-04:00

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

2009-04-26T08:14:00.002-04:00

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"

2009-04-24T10:05:00.003-04:00

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

2009-04-23T07:42:00.004-04:00

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!