Cynthia Anne Brouse 1957 - 2010

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

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.

The optimist's version

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

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

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

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

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

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

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

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!

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

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

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

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

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

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

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

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

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

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

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

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??

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....

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!

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?

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

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

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

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

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

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.