Monday 31 October 2011

GIRL IN BUBBLE

I don't feel any different because my immune system is down to near-zero. But it means that Ilga can't visit because she's not feeling well. And then it means I can't see Eliza because she has a cold. I have not seen Eliza in what feels like years. Some five-year old part of me is whining, it's not fair. And when Colin and me are sitting at the market, drinking coffee and eating Bavarian apple cake and a toddler strays in our direction, I freeze, praying he won't come near me because little kids are the next closest thing to a petri dish full of flu germs. When my cab driver sniffles, I feel myself pressing back into my seat, straining for that extra inch away from the possibility of germs. I religiously wipe down grocery cart handles with an anti-bacterial wipe. When I get home from anywhere, I run for the hand sanitizer. I'm constantly reminding myself not to touch my face. I'm beginning to imagine I can SEE e-coli on raw spinach leaves.

Funny story, though...

The other night, after I'd tidied the apartment and was bloated with self-esteem over my shining kitchen sink and uncluttered coffee table, I decided a little ambiance would be nice. I lit candles and settled into blissful silence, admiring my handiwork. (You can all imagine how often I have a clean apartment by the momentousness of the occasion) An hour later, my nose started to leak. One tissue, two, three, four... And then a nose bleed. Not a bad nosebleed, but I have been warned about the lack of platelets in my blood. No, no, no. An infection? I run for the thermometer and stick it in my mouth. If my temperature reaches even 100F, I have to go the hospital. The Big Book of Cancer Leaflets, saith it is so. A minute later, the thermometer beeps and I take it out and read the result.  97.8F

And suddenly I recall that candle smoke always makes my nose run.

Girl in a bubble. Crap. Is it Spring yet?

Friday 28 October 2011

THE DREAM


In the dream, I am lacking some key blood component and could not survive chemotherapy were it not for my volunteer. I never see my volunteer clearly. He or she is a figure in white, sitting in one of the hospital's big reclining chairs, arm outstretched, hooked up to IV lines, donating a supply of the ingredient my own blood lacks. I dream this several times and then the dream recurs on subsequent nights. The plot expands.

We are all missing something, we cancer patients, and each one of us has a volunteer. It is treatment beneath the treatment they tell us about. I glance into a room much like a smaller version of the chemo clinic. Volunteers dressed in white are seated in a semi-circle of chairs, donating this precious chemical which will allow us to survive. I cannot see their features. Just the vague shape of faces and bodies dressed in glowing white gowns. The clinic is silent and peaceful. The feeling is matter-of-fact. This is the job of the volunteers and they are doing it unsung and without expectation of thanks or reward.

I wake up thinking of prayers, of healing energy and good wishes sent to we cancer patients. I wake up wondering about the beneath of healing.

Thursday 27 October 2011

RECLUSE RECLAIMED


My family tree is rather more like a family bramble bush. It makes it difficult for people to figure out my family line. Just recently, in particular, my sister and her mother.

Yolanda, my sister, is 26 years younger than me. And I never know how to introduce Vanessa - who is within two years of my age. I've tried, "my father's wife...," & "Yolanda's Mom." The one that is most accurate and works best for me is, "my friend, Vanessa..."

But that doesn't help anyone decipher connections in the family bramble. After a little explaining, folks get the AHA moment: "Oh! She's your half-sister." And "Oh...you have different mothers." "Oh! Your father remarried."

Having lost my mother at 13 and left home very young, I'm a person who doesn't much deal in half-anythings or step-anythings. I have a decent-sized family, none of whom are blood relations or related by marriage. I've been in the business of DIY family building since I was a kid. I have sisters from Halifax to Milwaukee to Haye River. I have my NSCAD sisters. And I have my friend, Vanessa - who falls into the sister category and my  sister (full stop), Yolanda. 

Yolanda - last seen disappearing into a Yellow cab this morning, bound for the airport shuttle, laden down with ponchos, backpacks & a bit more bead work than she'd expected to lug home. Vanessa, on a different schedule, departed yesterday.

The apartment seems profoundly silent and empty. The air mattress is neatly rolled back into its bag and the Yolanda-bits no longer festoon the coffee table, kitchen table and various surfaces. To tell the truth, it feels a wee bit lonely.

Confirmed recluse that I am, my natural inclination, when ill, is to curl up in a metaphorical ball and refuse to answer the door. So "company" and "chemo" in the same space? I wondered how it would go.

I'm getting used to being surprised lately.  For example, realizing I might have got more than a little depressed around the edges left to my stodgy old self. Even though there were two days of toxic overload and sickness, it was good to have people here.

And I realize, not for the first time, that although my sister and I were raised apart, are years apart in age and are different in some ways, we inhabit a small space with no difficulty at all. Our rhythms are similar. The same need for conversation alternating with space, at the same times. We hold many of the same values. Vanessa and me chat as if we'd seen each other yesterday. Nothing is an effort. Separated by 1,000 miles of distance and infrequent visits, somehow my actual family turns out to be...well, real family, like my friends.

Since September, I've had more social interaction than I'd usually average in two years. And after tomorrow, I'm booked to see Colin, Ilga, Eliza and Peter.

Meanwhile, stores & galleries are asking for work for Christmas. It's nearly impossible to combine a home business and this much visiting. In the past, ignoring the fact of mortality, I gave up a social life. But now I think (not that I plan on seeing my deathbed anytime in the near future, you understand) at the end, do I really want to measure my life by the number of pieces of jewelry I sold?

Guess I'm counting a different kind of jewel these days.








Tuesday 25 October 2011

THUD

A half-mile walk to the hair dresser's shop on a warm fall day. The leaves are flaming red and gold against the remaining green of summer and the air is fresh. I start out at a reasonably jaunty pace but hit a smallish hill towards my destination and suddenly my body becomes leaden. I'm not otherwise tired at all. I'm in good spirits. It's just that my body wants to stop. Now.

This is the third to fourth day-in fatigue I've been warned about. I straggle into the salon, where Sandy carefully buzzes what's left of my hair down to a quarter inch. I look in the mirror - and I can't help thinking of concentration camps. Except that in my case, I have the steroid Moon-face and the fake "healthy" blush that goes with it. Weird as it is to see myself this far from totally bald, I decide I prefer it to the inch of hair she's cut off.

I plod home and for a while, I don't put on a scarf or hat. I look in the mirror, trying to adjust all over again to a new face.  My sister has gone to pick up her mother, who has just arrived from Toronto ( &who is close enough in age to me to be a friend, rather than a "step-mother"). I decide that bald is not the first thing I want her to see, so I slap on the silver Kim Novak wig. While I wait for them to get back, I make a pasta sauce and salad and it occurs to me that I'm dithering around a little aimlessly. Clumsier than usual...slower and foggier than usual. Chemo fog.

The chemo, as I've told you, was, subjectively, a pretty benign experience. But there are after-effects. For one thing, a medication with the sprightly name, "Zofran" causes everything you eat to turn into cement. I'm drinking two to three quarts of water a day and downing remedies...but no, cement it is. Pardon my over-sharing. But if you have to go through this, you should know. I hate the effect, but I'm grateful. One of my chemo drugs, Cisplatin, used to make patients so violently ill that nurses used to call it "Cisflatten." One of my nurses told me that it was a miracle when they found the right combination to stop that from happening. I'll take her word because I can actually sleep peacefully and read during treatment - which is SO different from my fear of being ill during the whole procedure.

I'm reading, "The Emperor of all Maladies" right now. A "biography" of Cancer that won a Pullitzer Prize. Much as I'm not enjoying some of the side-effects of treatment, there's a part of me that finds the science, much as I can follow it, fascinating. And I worked in a library for years. That makes research a bit like breathing. I have to know things.  I've learned how lucky I am not to have had this in, say...1985. My nurse says, "You're lucky you didn't have it in 1995." Treatment has come a long way.

I've also learned that each of those Chernobylish bags dripping into my arm during treatment are worth $2,000. And they have a very short shelf life.

I'm relieved at the good fortune of being born in Canada. When I think of the MRIs, the CAT and PET scans, the X-rays, the chemo drugs, the hospital time and eight hours of brain surgery - I wonder what would have happened to me had I been in a country without medicare. There are still expenses, of course - and the income loss - but I'm grateful to Tommy Douglas, who fought for universal health care back-when.

This is just a little catch-up for all you kind friends who've been following along. I'm doing more or less okay. And I've stopped crying over my cat. Now I think of him with great fondness and it makes me smile to know that he's won Jan over. Her husband laughs watching him follow her everywhere in the house. This means he's smitten with her too. I breathe so much easier knowing that he's got a good home.

And really, I have a feeling that dealing with myself for the next six months is going to be enough for me to handle... But rest assured, I'm a cranky old broad - and I'm not going anywhere!

Love to all. 

Wednesday 19 October 2011

COOKIES AND FEAR

I feel like an ass. Okay, the chemo clinic isn't Club Med. It isn't a day in the south of France...
but they do serve sandwiches, cookies and juice at noon. And they are good sandwiches...egg salad  or tuna with a little mayo and a little salt - on whole wheat bread. At 1:30, a volunteer wheels a cart through the clinic and offers tea, coffee, juice and cookies. The chair is comfy. There are heated flannel sheets if you feel chilled. It is not the Little Shop of Horrors. At all.

I am sitting in the waiting room, nervously waiting for "my" nurse to fetch me. When she comes in, she sits down in the chair next to me, looks into my eyes, smiles and says, "You are going to be just fine. You aren't going to feel anything when the chemo drugs are going through your system. You aren't going to be sick. You don't have to be scared - cancer treatment has come a long way..."

And with that, she leads me to the clinic, to my chair. She manages to hit my "thready" vein in one nearly painless try and settles in to tell me how good my blood work looks. My blood pressure, as usual is low. She laughs at my heartbeat because it takes her a minute to find a pulse. "It's a shy little heartbeat, but it's steady," she says. And then, after suiting up in gloves and a gown, she covers me with a warm blanket and starts the drip.

I look around. Everyone looks cheery. The patients, I mean, the others hooked up to IVs filled with toxins. People, catching my eye, smile and give a little wave. We are sailors together on the poisoned sea...all of us rowing towards the shore of wellness. No one looks bloated from steroids or emaciated or nauseated. One woman is working on embroidery. Some visit with a friend or family member. Some, like me, read. 

After a while, I doze. The only problem with dozing is that I'm more or less upright, so gravity grabs my jaw - I wake up every few minutes to the embarrassing realization that I am snoozing slack-jawed and mouth gaping. Fortunately, I wake up before I start to drool in public.

The whole time, I keep wishing I could turn my cell phone on and call Wendy, who, this morning felt at least as apprehensive as I did. I wish I could call all of you and say - I'm going to get the hell through this. I have ginger and crackers and meds when I need them. I have friends. Nurse Ratchet is definitely nowhere in sight.

And apparently western medicine is not the boogie man after all.


TRYING TO WHISTE PAST THE GRAVEYARD



8:00 a.m.

I pack the following: The Big Book of Cancer, handouts now sorted into an accordion file, a container of yogurt with raspberries and blueberries, soda crackers, my kindle, a lined writing pad, a paperback – Possible Side Effects, which is not about medication, a pair of slippers and three prescription bottles containing anti-nausea drugs.

9:00 a.m.

I’ve showered and shaved my legs with a regular razor for the last time. Once I’ve had chemo, I have to use an electric razor for the few weeks in-between now and losing my hair. I put on lipstick and blush and dress in cotton knit pants & camisole and a loose rayon knit jacket. I’m hoping that this will be a comfortable outfit to sit in for five hours. I check the bag for the third or fourth time to make sure everything is there. I eat a bowl of cereal and fruit. I brush my teeth again. It’s 9:15 and I have an hour and 15 minutes to wait.

I hate first days. First days at school. First days at a new job. And surely the first day of chemotherapy. Once I know a routine, even if I hate it, I become reasonably stoic. I hate  having to ask questions, trying to cooperate when I don’t have the faintest idea how to cooperate and generally I hate being the stupid new kid.

I’m scared. Scared of the IV because my veins are miniscule. Scared of how it will feel to have poison injected into my veins. Scared I’ll throw up, scared it will hurt, scared of the side effects. Scared I’ll cry.

Some people go through treatment without suffering all the side effects. I say a prayer, hoping something, some force in the universe is listening.

Oh Lord, let me be one of the lucky few who doesn’t have all the side effects. And if I’m not, help me be brave.

Tuesday 18 October 2011

HAPPY DANCE AND FLOOR FILL IN THE STUDIO

Pardon my enthusiasm, but good medical news has been in short supply - and although I'm a glass-half-full girl, nonetheless I generally suspect the glass is one of those cheesy practical joke items punched full of holes.

Last day in the hospital, one of the surgeons who removed the alien from my brain mentions that a CAT scan, with the exception of the tumor in my lung, looked clean. This, he tells me, would be a good thing. It would mean they've caught the disease early - in spite of the rapid travel time from lung to brain. This is where the glass is half full.

The holes in the glass part comes in when he tells me that a PET scan will be the final test of that and might turn up something the other tests haven't.

Yesterday, I see the thoracic surgeon - a cheerful, upbeat kind of guy. When I mention that I'm anxious about the scan results, he rifles through the paper on his clipboard and says, "The tumor in your lung looks pretty hot but...he scans the sheet again...nothing else. Nope. Nothing." He says I'll only see him again if the chemo doesn't finish off the tumor...or if it shrinks and then begins to grow again. When I leave, I flash him a big smile. "Thanks," I tell him, "I hope I don't have to see you again." And Ilga, Jan and I head out to a pancake house to celebrate.

I begin today by continuing a pattern of procrastination that set in a few days ago. Sunday, I am supposed to clean the studio.  Detta is coming to help. But Sean arrives first for a visit and we are all having far too much fun visiting to actually do any work. Yesterday, the day I get the good news, I vault into full attention deficit mode. I make a big mess in the studio, dumping the contents of storage drawers onto the floor...and then dessert it there, coming in once in a while to stare at it and urge myself to do something. Then I go on Facebook.
I order leggings online. I watch "Boardwalk Empire." I sort all the information sheets from The Big Book of Cancer Handouts into an accordian file.

Subsequently, today is laundry-cleaning-sign-the-will-grocery-shopping-pick-up-prescriptions. And today I will have to haul my procrastinating ass into line because my little sister arrives on Friday and it would nice if there was food in the fridge - and a space on the studio floor to put the air mattress. And tomorrow, chemo starts - so I suspect that all those chores are going to look insurmountable. So, with that in mind - I sit down to tell you all this. Instead.

Anyone want to volunteer to live in and be in charge of kicking me into action?

No?

Darn.


Sunday 16 October 2011

Wide and forever



There are days when Auntie C squats squarely in front of me blocking the horizon.
Days filled with wills and power of attorney paperwork, with assigning an alternative decision maker in the event that I reach turnip status and can't make my own decisions. There are consent forms, prescriptions to fill, classes to attend, doctor’s appointments, x-rays, PET scans, blood tests and coming up, chemotherapy. Ah, Auntie, you do fill up a room.

But today the sky is blue and the leaves are slowly waltzing from green to red and gold. There is whipped cream melting in my coffee, left over from a “team Linda” meeting yesterday. And there are letters from two of my best male friends – friends I thought were gone…lost to the pace of life, distance and the relentless changes life brings…

My women friends are the bedrock of my life. I can count on them when my life goes south, when celebration is due, when bodies need to be buried and they support me when I make decisions that scare the crap out of them. When the decisions turn out to be disasters, they never say, “I told you so.” I try to do the same for them. It’s the way women are.

My men friends? I don’t even need the fingers of one hand to count my close male friends. And they matter to me in a different way. There is always a special kind of chemistry between men and women who are friends. I speak a different language with these two men who have wandered back into my life – and in thinking I’d lost them, a part of my soul went painfully mute.

But they’re guys. In spite of their writing talent, they pretty much stink at maintaining correspondence – which is a guy thing. But here we are…my world flips over onto its head, everything I know falls out of my pockets and free-falls and they are here, reminding me of my own story as well as theirs. One with a rant that makes me giggle out loud. One with the story about the calling of being a father. I laugh and weep through the letters. I can’t wait to reply.

And the sun feels so much warmer. It feels like there is a future – something that goes shining on, big and wide and limitless. No matter what happens in this little stage play, love goes on and on.

Friday 14 October 2011

WHAT THE RAIN BROUGHT





I pick up the TV remote and click the off button in the middle of a rerun of The Big Bang Theory. It’s raining. The balcony door is open and I listen to the drumming of water on pavement. After a break this afternoon, during which I slept, the phone  began to ring again. Friends, call centers, wrong numbers…

I twitch inside my skin…suddenly feeling crowded. I feel wrong and I can’t name it. All I know is that I don’t want to talk.

In particular, I don’t want to talk about cancer. I am trying to remember what it was like to have other discussions, but the two hour chemo class today has dumped chemotherapy and all its ramifications into my head again – and my brain is bulging with information I wish I could just forget for one night.

So I listen to the rain and...

*****

It’s 1964. I am a sixteen year-old runaway, living on the streets in New York City. It is night time and I am somewhere just outside The Village. It is raining. I am standing across from an Orange Julius stand, watching the lurid reflection of the neon sign flash in the puddles. There are speakers attached to the outside of the stand and “The Sounds of Silence” is playing to an almost deserted street. I stop where I am, with the rain soaking my clothes and the song sinking into my bones.

There is my overturned life then and now. There is that young girl, alone in New York – sad, but with her whole life ahead of her. And somehow it doesn’t feel linear anymore. There are crowds of me. Sometimes, I wish I could free us all.

Wednesday 12 October 2011

IN WHICH SHE TAKES HER HEAD OUT OF HER A**.

I've posted a self-portrait from today because...

Today I did not throw myself a giant pity-party. Consider that high-five-worthy. Between hospital appointments, never getting through a personal phone call without the call waiting beep (and that's usually the hospital...again), having to make out a Will, read handouts (3" thick) from the Cancer Center (I call these "The Big Book of Cancer) and trying to keep up with answering letters and the more mundane aspects of life like laundry, dishes and housework, it's really easy to find myself with fraying nerves and heading for the big black pit.

It's imperative - and maybe even a literal matter of life and death - to stay out of that pit. And to remember the overwhelming kindnesses that have come my way over the course of the last month. It stuns me to think that on September 13th, I was still clinging to the idea that there was a chance that I had a simple inner ear problem. By the 14th, my life had gone ass over teakettle and suddenly Cancer was my new day job.

As a confirmed hermit and curmudgeon, a phone phobic and avoider of most social events involving more than 2 other people, it also stuns me to see how many friends I have. I'd always thought that if anything awful happened, I would have to locate a good sized cardboard box as my new apartment and find an alley to put it in. Wendy, my friend for 40 years, swore that she'd never let that happen. And it wasn't that I lacked faith in her - but I rather thought that stubborn pride and independence might rear it's foolish head and I'd be unable to accept any offer of help.

Amazing how a person can accept help when suddenly they find they don't have a job or a small business or anything else to pay for luxuries like food. When they are, in fact, attached to IVs and a catheter and can't even get up to close a door. The goodwill and positive energy directed my way boggled my mind. People did everything from buying my groceries to caring for my cat to cleaning my house. Suddenly, there was "Team Linda," a group of friends both local and at a distance, who dedicated themselves to getting me through this - whether it was by bringing me food, paying a bill, driving me to the hundreds of appointments, giving good advice, listening when I'm really down or thinking of all the potential needs I might have - and don't want to face. I'm not going to name my local friends here. You know who you are. I just hope you know how much I appreciate everything. Thanks also to people who write and call themselves "only" Facebook friends. You've been amazing. There's no "only" there at all.

And my dear friend Cate, in Milwaukee, put her board games up for auction and I hear that the auction is rolling right along. Not only that, but strangers have donated their own games to the auction. Hello out there, Board Game Geeks. Talk about the kindness of strangers. Now, I may want to kill Cate for that second pathetic picture she sneaked up on your site, but her heart was definitely in the right place and she's thinking a whole lot more clearly than I am about future expenses - like the price of medications. I'm grateful to her - and to all the BGG folks who pitched in. I'm just amazed at how much power stems from the grass roots. Thank you so much.

(I don't know if this is an original thought or not) but I believe that the opposite of despair is not hope - but gratitude.

I'm so very grateful to all of you. "Thank you," doesn't even come close.

Namaste.



Monday 10 October 2011

THE FERRYMAN

I think, often, about the surgeon who, only weeks ago, skillfully removed a four centimeter tumour covering my cerebellum and edging dangerously close to my brain stem. The night before the surgery, he visits me. He warns me there's a chance I might be deaf after the operation, or paralyzed on the left side of my face or suffer permanent loss of balance.
I ask, “Are you a good neurosurgeon.” He says nothing, but the social worker with him smiles at me and nods an emphatic yes.
“Do good work, please. Steady hands,” I said. He nods.

An hour later the anesthetist arrives – a very tall man in a dark, elegant suit. Even in my blurry state, I notice and admire his tie and sense of style – and more, the feeling of quiet about him.
“Have you had any problem with anesthetic in the past?”
“I’ve been sick to my stomach.”
“Oh,” he said, “that won’t happen. We have much better drugs now. Is there anything you want to ask of me?”
“Bring me out of it alive.”

The anesthetist is the first person I see the next day. He walks silently alongside my gurney as the orderly rolls me down to the operating room. Tears are rolling down my face and he asks, “What's wrong?”
“I’m afraid.”
He doesn’t answer, but when the orderly parks my gurney outside the operating theatre, he says, “I’ll just adjust this IV a little.” Next thing I know, I wake up in Intensive Care and  my friend Colin is telling me it is all over and has gone well. I have none of the possible deficits. Within hours I am impatient to get back to a regular hospital room.

How different this is from my memory of surgery 30 years ago when an ectopic  pregnancy had to terminated. As I was being pushed to the operating room, the nurse gave me sedatives – far too late to do anything to combat my fear or nervousness. The orderly parked my gurney in the hall and left – and just before they wheeled me inside, I overheard the surgeon complaining that his Saturday golf game was ruined .

The images of the minutes before that operation are burned into my brain – a kind of nightmare. I am lying on the gurney. Towering over me are masked people who are, I am thinking, just spending another day at work. I am the work…something broken that must be fixed. It's so cold my teeth are chattering and the lights are blinding. The anesthetist puts a needle in my vein and instructs me to count backwards. A cold heavy feeling pulses up my arm and just before I pass out, I say, “that feels like death.”

This time, though, I am spared all that. And afterwards, I am so grateful for that kindness.
Often I consider the idea that an anesthetist is like Charon, the Ferryman who carries souls down the River Styx. But this Ferryman not only keeps me perched in-between life and death but is so skilled that he can turn the boat and return me to the living eight hours later. This Ferryman is not the old, angry or ugly Charon of Greek myth, but a handsome beautifully dressed man who exudes an air of calm and kindness. Charon means, “keen gaze” and perhaps that is where myth meets anesthetist.

I wish I remembered his name. And I wonder if other patients think about how their lives are not only in the hands of the surgeon but of the man or woman keeping them alive and regulating consciousness just enough so that they don’t feel pain. I wish I could thank him for that.  

Friday 7 October 2011

IN WHICH SHE SAYS NOTHING UPLIFTING

Yesterday sucked swamp water. I thought I was fine, mind you - but wolves and ravens were lurking just out of my range of vision.

I am talking to Catie, who tells me she has launched an auction to raise money I will no doubt need for the expenses that I don't want to believe will keep popping up out of nowhere. I feel very peculiar about this...like I've suddenly become a Cancer poster child. I know she's doing it out of love and concern and hell as much as I don't want to believe I'll have all those expenses, I know that's just denial talking.

Call interrupt sounds and it's the hospital. Could I come in on November 7th at 9:00 a.m. to see the medical oncologist. I scribble the information down.

"Oh. And you'll need to have your blood work done at 7:30." Seven-thirty? In the morning? Sweet Jesus.

"How long does it take them to process the test?"

"An hour and a half."

"But that's the busiest time of the day for the blood clinic. I might not get in for an hour."

"I know," the nurse says,"if it's too crowded, go up to the 11th floor to the blood clinic that's just for chemo patients."

I press "flash" on the phone and go back to my conversation with Cate. A minute later, call interrupt sounds again. It's the Oncologist's nurse.

"Sorry. And you need to come in for an X-ray on November 4th."

I scribble the additional information and when I go back into the call with Cate, suddenly my voice is shaking. I'm starting to cry and I'm resentful and angry as hell at how my life has been kidnapped by Cancer and the Zebra it rode in on. I'm downright pissed that, much as I try to find some semblance of normality, there is a hosptial appointment every other day to remind me that "normal" has left the building.

In addition, my cat has been officially adopted and I'm stuck with a paradox. I'm grateful and relieved that friends have given him a really good home. I'm happy to know that he cuddles with Jan, that people play with him. That they are charmed by his habit of using his water dish as a finger bowl - how he dips a paw in, and uses it to wash his face. I've honestly never seen him drink out of his water dish. And he comes to the door to greet them now - rather than running away and hiding. This is such good news.

But I can't stop crying because now it's real. He won't be coming home. I go through all the reasons I simply can't have him. That even my sweat will be toxic when I start chemo - and I would pose a danger to him if I even petted him. That I would not be allowed to clean his litter box. That Goddess only knows whether I'll have surgery yet or develop the slightest temperature and have to admitted to the hospital. I know I can't yank an autistic little cat through all that. But my heart only knows he's not here and I cannot stop crying.

I pick up the phone to call Wendy - and it's dead. There's a message on the screen. Check phone line. So I pick up my emergency cell phone - the one without a plan that costs 30 cents a minute - and I call the repair service. After 30 minutes, the Muzak stops and someone answers. I report the problem. I know that it's not just my phone because I can't get through to a neighbor in my building who has the same provider. The kid on the other end informs me that unless 3 customers report their dead phones, it's "an isolated incident." I ask how they are supposed to report anything when their phones are dead. I call my super, who has a reliable phone provider, and she tells me someone else with a cell has called and been told that a repair crew will be out on Tuesday. It's Thursday night. Are you kidding me?

I send a blistering email to Eastlink and by some miracle, they answer me an hour later. It's an area problem. It will be fixed by morning. They are refunding the money I wasted on my cell phone on my next bill.

I take two Adivan, grab the Kindle Cate gave me and spend the next half hour reading Denis Leary's "Why We Suck: A Feel Good Guide to Staying Fat, Loud, Lazy and Stupid." It's just what I need. Leary is as abrasive, bright and politically incorrect as his character on "Rescue me." He's pissed off at everything from pictures of Brittany Spears lady parts to people who raise over-entitled children. The book is a rant from beginning to end. And aren't I just in a ranting kind of mood? Yes. I am. I recommend Denis Leary to anyone who feels like putting a fist through the wall.

Finally, I fall asleep. For twelve hours.

I wake up with puffy eyes & a slight medication hangover - and a dead phone. But the sun is shining. It's a gorgeous fall day. And my friend Colin is taking me out for some dashboard time. Soon, I will be stoic again. People will mistake me for brave because I'm not a blubbering, furious mess. Soon I'll have something more encouraging or inspiring to say. Really soon, I hope.










Wednesday 5 October 2011

Kleenex and killer sex


The day starts at 8:30 a.m. with the same extensive set of questions I’ve answered  on at least five other occasions. Followed by the same neurological tests I’ve done fifty times. "Touch your finger to your nose, then touch my finger." A half hour later, the medical oncologist bristles into the room, begins her spiel and doesn’t brook interruption. I do manage to ask, “Will I lose my hair?” What’s left of it, anyway, I think - but I don't say that aloud. She doesn’t hesitate. “Yes.”

Afterwards, I say to the nurse, “Well, she’s certainly…um…efficient, isn’t she?”
“She’s professional,” the nurse replies, “and if I needed a medical oncologist, I’d want her. If something isn’t working, she’ll call a halt.” Good to know.

The nurse hands over a 3 inch thick folder of reading material on all aspects of medication, cancer and chemotherapy. Oh good. Cancer AND homework.

Ilga has been with me, taking notes. Her car has been parked over the two hour limit, and when she ventures out in the pouring rain and wind to correct the situation, she takes a header and sprains her wrist. I urge her to go home and pack some ice on her wrist. I assure her I can make it through the rest on my own. Instead, we go for coffee and doughnuts in the cafeteria. Ilga can barely move her fingers and finally admits to needing ice and bandages. She heads home and I return to the waiting room.

Next it’s the social worker and paperwork to appeal my prescription deductible and get me on a special Cancer Pharmacare plan. Chemo and hospital tests and procedures are paid for but prescriptions can range from $700 to $8000 a month. Have mercy. Next year, I won’t qualify for coverage. What then?

I have an hour to kill before I see the radiation oncologist so I shop. I buy winter weight leggings and leg warmers. The leg warmers make me grin. So very, very eighties. “Flashdance,” anyone? To hell with it. I love leg warmers. Leg warmers are cozy and a skinny-ankled girl’s best friends. Cheery to be in a mall and find a sale, but short-lived. I plod back to the hospital.

Dr. Bowes arrives on time and Ilga finds us a few minutes later. Her hurt wrist is now sporting a navy blue brace. Finally, we get some clarification – all the doctors agree that chemo comes first.They don't really know much about this type of cancer. It's pretty much a mystery to them, but they intend to employ the medical equivalent of weapons of mass destruction.

Great poisonous toxic whacks of chemo. If I so much as blow my nose, the Kleenex will have to be double-bagged, labeled and disposed of by the hospital. I will be oozing toxins from my pores. I could kill someone just by having sex with them. The only good news is that each round is three days, with 21 days off in-between, so my body – which will by then have zero immunity to anything – can recover. Then we’ll do it again and see if the tumour is shrinking – and if I can physically stand the treatments. If it's working, the prize is two more months of the same. Four months total. And then radiation on my brain. If the chemo doesn’t work – maybe surgery and radiation. Hello 2012. Maybe I'll get to see you by Springtime.

The prognosis? A next-to-nothing chance of being cured. This little Zebra is moving at light speed. The treatment is as aggressive as the cancer though, so there’s a better chance at remission…

Well, that’s what I told him…the nice oncologist who looks straight in my eyes and tells the truth without somehow crushing my hope:

“Five more years,” I said when I met him, “I want five more years.”

Remission.


Tuesday 4 October 2011

ETIQUETTE

Lately, I’ve noticed that some friends don’t tell me what’s going on in their lives. They don’t complain or celebrate good news or rant when they’re hurt and angry.

They ask how I am. They hope I’ll get well or that I’m feeling better. I’m in their prayers. And I understand that this is sincere and generous. I’m grateful for the good wishes and prayers but…

I wonder if they still see me – or if The Cancer, that fat old usurper is standing smack in front of me, blocking the view.

Maybe they’re just fuzzy about etiquette…can you talk about plans and hopes for the future with someone whose future may (or may not) be limited? Is it in poor taste to be happy in front of a person with a serious illness? Is it beyond ungrateful to bitch about the disappointments and aggravations in your life to someone who has (what might be perceived as) a bigger problem?

Here are some guidelines for the confused:

I’m still me, for better or worse.

I still very much want to hear your good news and be able to rejoice with you.

I still empathize when you’ve had a disappointment or are hurt or lonely. And if it helps you to talk, I want to listen.

I still love to read and write. I love art and fine craft. It’s never boring to hear about your creative life. Or for that matter, those frustrating creative blocks we all go through.

I still love to talk about God, life, death, astrology, science, Coronation Street, ecology, the universe and everything.

If someone does you wrong, I’ll still help you bury the body.

I crack cancer jokes and death jokes, so you don’t have to tip-toe.

I may have cancer but it doesn’t have me.

So smile for me, okay? And stop worrying.

Monday 3 October 2011

WOLVES, ZEBRAS AND PAPERWORK


People seem to be amazed that I am well and other than the fact that my hair is short or I am wearing a hat or head wrap, I appear to be my usual self. People say I am “amazing” or “tough.”

I am, in fact, in better shape than I have been for many months, thanks to removal of the brain zebra. I’m not really amazing, nor am I tough – I just feel better.

Not-well is coming when treatment begins, of course, but while I am as apprehensive as anyone else would be, there is nothing to do but accept the inevitability of that.

Perhaps people expect depression or sadness. Or tears. Let me assure you, there have been tears and sadness and terror, too. For the first three or four days in the hospital, I cried uncontrollably many times every day – but not when I had visitors. Waking from nightmares on the rare nights when I slept for a few hours, I sobbed my heart out. I cried every single time I thought of my cat. The possibility that I might die sooner than later became horrifyingly real. When the hour of the wolf arrives, you are always alone. You fall into the abyss that lives in the wolf’s eyes and there is no avoiding it.
The only way out is through….

But for now, there is business. Paperwork. Medical appointments. A house to, bit by bit, clean and tidy. A hospital suitcase to organize so that I’m not stuck in a Johnny shirt, with no decent soap for days on end. I have to appeal my pharmacare deductible and see if I can be included in a government plan that will pay for taxis to and from treatment. I need to see a lawyer to have a will and power of attorney done. And all the mundane stuff…household bills, GST reports etc. still has to be dealt with, as well.

One cannot actually believe in one’s own death for more than a few minutes at a time. In the middle of life and all the mundane chores that involves, the idea of one’s own death is surreal and abstract…an intellectual concept. The mind simply cannot grasp it.
Perhaps it is a protective mechanism – like shock.

When Wendy had breast cancer, I said to her that we are all standing on a highway and there is a car speeding right for us. The difference between her, having cancer, and the rest of us, was that she had seen the color of her car. The car is speeding towards everyone, nonetheless, whether or not we can see it. It’s only a matter of distance.

Now I can see the color of my car. But I cannot judge the distance. And I am looking at my surroundings to see if there is shoulder on the highway I can leap to, to avoid the impact.

Saturday 1 October 2011

A BUSMAN'S HOLIDAY FROM CANCER

By five p.m., Wendy was about to call out the search dogs. My appointment with the social worker was at one o’clock and by late afternoon, I still wasn’t answering my phone.

Truth was, it was a beautiful day – just warm enough, sunny, with a mild breeze.
A perfect day to stroll and, just for a few hours, stop thinking about cancer and pretend a return to normal life.

I window shopped in expensive stores admiring things I couldn’t afford – outrageous purple shoes with five inch heels, $600 boots, $300 lingerie.

I bought a hot dog with sauerkraut & Dijon mustard and sat on the stone wall by the library to eat it and share bits of bread with the pigeons and starlings. I love starlings…their flashes of green, their patterned feathers…and how they can swoop up to catch a tiny piece of bread in midair.

I browsed at the library and took out three books – The Staircase Letters: An Extraordinary Friendship at the End of Life, My Invented Country by Isabel Allende, Yeshua:The Gospel of St. Thomas, a novel about Jesus through the eyes of St. Thomas the Doubter.

I sauntered along Argyle street, one of the funkiest streets in town and people watched.  I visited my former coworkers. I bought a brownie with icing and a pair of jeans.

All that time, I was just part of the crowd…just one more ordinary person enjoying a beautiful fall day. And when I got home, I called Wendy so she’d know I was safe – but other than that, gave the phone the night off.

It’s been 17 days now. Seventeen days of all-cancer, all-the-time. Appointments, tests, research, paperwork, phone calls….  I’m tired of it, so tired of talking about it and it isn’t about to end anytime soon.

But I had this one afternoon. Me and the starlings sharing bread. Me and the breeze and blue sky – no past and no future. It was glorious.