“A mountain keeps an echo deep inside. That's how I hold your voice.”

The string that ties us, one to another, pulls tonight. Friend, I keep you in my heart through happiness and sorrow - yours or mine. I've called out - to the universe, to the creator, to the force that spins the planets. One small voice hardly daring for an answer. I ask for your burdens to be light and your heart mended. I ask it for you and those who came before you and those who came before them. May you be strong in the broken places and your world be full of light.
Goodnight, friend. Dream of the 8th fire. Dream bright.

SEVEN LASHES

I must have been washing my face when it happened. Making sure I got the eye shadow off. Or maybe it was just random – an eyelash dropping on my cheek or my pillow, wholly unnoticed by me. It’s not hard to imagine that. If you asked me the current color of my eyebrows or eyelashes, I’d have to say “transparent.” I retain about 50% of my eyebrows and I joke that I have seven eye lashes left. It could be more. It could be 14. At any rate, even finding them to apply mascara has become a game of Where’s Waldo. And my hair, what I can see of it, has turned white since having chemo - except for an odd diamond of gray, right at my widow’s peak. 

When you’re diagnosed with cancer and you know treatment is going to make your hair fall out, it isn’t the worst of your concerns – but make no mistake, it’s on the list. And as you sink into the chemo swamp of depression your bald head & Pillsbury Dough Boy steroid face do nothing to increase your happiness.  Friends cheer you on with “bald is beautiful” – and indeed it is. On Sinead O’Connor or Demi Moore. For me, it provokes images of women collaborators who were shaved bald after wars, or concentration camp victims. There is shame and fear attached to cancer. Your shaved head, at my age, is not mistaken for a political statement – people avert their eyes.

But catastrophes are always good learning experiences – like it or not. I surprised myself by choosing white/gray wigs, for instance. I tried on my preferred color, red, and was surprised that I didn’t like it. I tried blonde and brown and black and finally white. And I can’t decide whether it makes me look more my age or simply less like I’m trying too hard. I do know that I’ve finally done the very thing I raged against for years. I’m making the effort to age gracefully. I wear less makeup. I’ve given up high heels. And I feel pretty good about all that. 

A male friend and I were discussing relationships the other day and he asked how I felt about them these days. I replied (cheerfully) “I’m bald and I don’t know how long I have to live, so it’s a moot point.” But that just leads me to another discovery – which is that I still like to look presentable for me – and for my friends (who panic a little when they drop in to discover I’m still in PJs at 4:00 p.m.)

I’m having fun learning to work around the appearance-catastrophes. And I find I’m hoping to have a lot more time to learn this growing-old-gracefully thing.

SLAYING DRAGONS

This is written for a friend. You know who you are.

“Fairy tales do not tell children the dragons exist. Children already know that dragons exist. Fairy tales tell children the dragons can be killed.”

-G. K. Chesterton

I don’t agree with the practice of “protecting” children or young people from news of illness or death. As G.K. Chesterton notes, children already know dragons exist.

As a kid I was afraid of many things…the little men who lived under my bed, for example. I used to make a giant leap so that none of them could grab my foot as I got into bed at night. A half-open closet door was the source of terrifying threats to me. My parents used to listen to “Dragnet” on the radio, just after bedtime – and that simple, ominous four note musical opening – dum da dum dum – frightened me half to death. Oh yes, there were dragons. But the worst of them were in the daytime world.

I was scared of some adults. One friend of my parents terrified me although he never raised a hand or his voice to me and I played with his children when my family visited his. There was just something dangerous and wrong that emanated from him and I stayed as far away from him as possible. Years later, when I was thirteen, he came into a restaurant where my friends and I were hanging out after school and his old ability to frighten me witless hadn’t diminished. We didn’t exchange a single word – but the hair on the back of my neck stood up and I excused myself from the booth and left. I ran all the way home.

Children have not learned to over-use the  left brain. Their right brains are sharp and aware. They have keen intuition and instinct – they know stuff you aren’t telling them. They feel emotional shifts and they sense meaning in silences. They know the difference between false and real cheer. They read body language. And all this is especially true when it comes to their parents.

So who are parents fooling when they “protect” their kids from the realities we will all, sooner or later, face? A child who isn’t told, knows something is wrong – and how terrifying it is that it’s so bad that their parents can’t say it aloud. And what if it’s their fault?

I can’t speak as a parent but I can speak as someone who was “protected” in this way. When my mother was diagnosed with leukaemia when I was thirteen, I was told. But visits to the hospitals were curtailed after a month or so…and there was little information other than the level of grief on my father's face. The hospital sent her home a week before she died – and by then, she was so ill, so weak, that there was only enough time to have one short conversation. Just time enough for her to ask me to take care of my family.

I don’t blame my father. It’s how it was at the time. Adults didn’t discuss these matters with children. And Goddess knows, you didn’t talk about death when it happened.

And what I missed was the chance to adjust to the idea of her death with her. I miss the conversations that never were, the lost opportunity to say goodbye…  And after her death, we didn’t talk about it. My father was devastated and I knew it, but so were my brother and me. And there was no one to talk to. Just the silent witnessing of my father unravelling.

I was not, I’m thankful, protected from seeing her one last time in an open casket. I remember my aunt saying tearily, “She looks so natural.” I was outraged. I knew, the moment I saw her, that she was not in that casket. And this was important because in that moment of seeing her, I knew in my bones that our bodies are not what we are. Perhaps I learned that dragons only exist in this world.

Customs and beliefs vary. And no one is going to insensitively bludgeon a child with terrible news. But withholding the realities of life, pretending there are no dragons, in my estimation, says more about the fears of parents than their children. And it’s unfair to rob anyone of the chance to visit a sick loved one, or for a last hug or a goodbye.

GRATITUDE FOR SHORT REPRIEVES

It’s a bright winter day. Real winter – north wind bringing us “feels like” temperatures of -15C. I walk a block to the corner store with a scarf tied over my face and think about how handy a ski mask would be. Only problem being, I’d likely scare the nice Chinese lady who owns the store half to death if I showed up with only eyes and mouth in evidence. In my area of town, ski masks are rarely about staying warm – or skiing. 

Returning home, I sit down to wrangle the dollars allotted to my 2012 budget. In estimates, I increase the cost of everything. Government pension laws allow a loophole for “shortened life expectancy” and I am permitted to withdraw a lump sum from my pension, so I need to plan carefully for the year. I feel sorry for my G.P. when I have to ask her to sign the form, verifying my truncated life span but I’m grateful that I don’t have to accept a small dole-out of my own money from now until the mythical expected age of 99. 

I move money around from chequing to savings, so I can track my spending monthly. And then I pray that somehow, I will stick to the budget. I’m glad to have it done – and happy that my head is clear enough now to accomplish something requiring this much attention. My energy is increasing a little. In the mornings, at any rate, I have my old energy back. 

Yesterday, I got up at 5:30 and steamed through the house, cleaning and tidying. I made split pea & red lentil soup, brown rice and quinoa before exhaustion hit and I crawled back into bed. The rest of the day was less than active but at least I got to laze in a cleaner apartment. 

I have hours now when I don’t think about having cancer. I live my life. I take care of the daily business of living. I’ve even begun to feel the presence of my muse hovering nearby. 

During my last radiation appointment, I met another patient with lung cancer. He looked young – maybe in his mid-thirties. Thin and haggard, slumped in his chair, he was the picture of defeat. He was introduced to me by a caregiver who first referred to him in the third person invisible. “He has lung cancer. He didn’t have chemo. It was too late.” I disliked her enormously for saying that. She asked me a lot of personal questions about my treatment – ending with, “What is your prognosis?” I was beginning to feel like it was a catastrophe competition and so, for shock value, I answered, “Statistically, eight months.” 

Later, I wrote an entry about this for the blog but saved the file without publishing. Much as I suspected that her care-giving had more to do with placing herself at the center of a drama, I felt wormy and wrong about being so judgemental, so I saved the file and walked away. I don’t know the whole story. I don’t know her. I don’t know what she’s sacrificed to leave her home province to care for her friend or how difficult it is for her and I have no right to condemn on the basis of one short meeting. Goddess knows, she could have been sad and exhausted – and just needed to talk a little. 

And my heart broke for him. He’d been diagnosed two months ago and shortly afterwards, had to place his mother in a home. She suffers from dementia. He said, “I told her about the cancer and she cried and said she’d pray for me and I’d be better in the morning.” I cannot begin to imagine the pain of that. He said, “You go through so many things, don’t you?” 

Yes, you do. You can't escape your terrified mind as it scrambles from one thought to the next. You go from panic to grief to hope to resignation in a split second. And then you do it all over. Again and again. 

On my way out, I went back to the waiting room and took his hand. I told him I was glad to meet him and wished him good days without pain, days of feeling well. He smiled at me. I nodded to his caregiver.

I wish him what I have now, days when I don’t think about cancer for hours at a time. Days when I am not a disease. 

I wish I had taken his phone number.

TURNING POINT

At 4:30 a.m., the sound of a large truck crunching over ice-covered snow. The beep-beep-beep and crash of dumpsters being hoisted, emptied and dropped back onto the ground. At 5:30, I give up on sleep, throw on my gray robe and fill the kettle. 

I have a feeling of anticipation like its Christmas morning or the first day of vacation. It’s my last day of radiation treatment and after today, there are no hospital appointments for almost two months. In two weeks, the radiation oncologist says, I’ll have a working immune system. In three weeks, he says I can join a gym. He advises me to start back onto my anti-oxidant supplements right away.

It’s an encouraging consultation. Although he keeps me waiting for nearly an hour, he apologizes and I tell him that one of his qualities as a doctor is that he doesn’t make his patients feel rushed. I say that the nurse has informed me he’s in a first meeting with a new patient – and I remember how kind and patient he was with me when we first met. He tells me he’s enjoyed having me as a patient and he knows it’s hard to get through treatment. “You’ve done well,” he says.  I feel like a kid getting a gold star from a favorite teacher. 

I’ve done well. This is to say, I showed up even when the dread of chemo was so strong that, days before a scheduled treatment, I would begin to doubt that I could walk through those doors and endure it one more time. 

An empty schedule stretches out ahead of me. I am not well yet. Some days begin with a burst of energy which fizzles and dies by afternoon, and there is still the possibility that I’ll be hit with worse exhaustion or skin problems from the radiation. I’m trying not to expect too much of myself. It’s a common pitfall after cancer treatment – expecting to be back to normal when treatment ends, only to find that you are still debilitated. And I don’t have any answers yet. It will be two months before they can tell how well the treatment worked.

Other than having signed up to a Pay It Forward event on Facebook and committed to making five handmade gifts, I have no plans. It seems like years since I’ve had any plans at all and I feel a little dumbfounded. I hope that I won’t find myself wandering listlessly around the apartment, starting and abandoning projects, ghosting around the place like a lost soul. And I’m hoping my muse hasn’t lost my address. 

One more day staring up at the big machine with its worn “Elmo loves you” sticker. One more day of joking with the techs about their freezing hands. One more time changing in and out of Johnny shirts and green housecoats.  

I’m remembering a quote of Mary Oliver’s:
 

"Tell me, what is it you plan to do with your one wild and precious life?"

Good things, I hope….

YEARS OF LIFE OR LIFE IN YEARS

Having made a major decision about my treatment, I’ve thought long and hard. And I’ve been remembering my father. A number of years back….

My father, his wife Vanessa and I are having lunch in a charming tea house in Oshawa, Ontario. It’s during one of my infrequent visits home and my father is having one of his bad days. The three of us are seated, waiting for our orders. Vanessa is tired, frustrated and stressed. She’s been my father’s caregiver for a long time. It’s a bone-grinding 24/7 job – because my father, stubbornly independent as always, is more than a handful and less than appreciative of her efforts.

 In the past few years, he’s suffered the consequences of a sub-arachnoid hemorrhage and a fall down cement steps that ultimately leads to a blood clot in his brain. He has dementia and something that the doctors say is not quite Parkinson’s disease – but close enough that he has the tremor, Parkinson’s mask and takes Parkinson’s medication. He is close to deaf and finds his hearing aid shrill and annoying. His short term memory is shot. Today, the mask is often in evidence – mouth open, blank stare, slow responses. 

I love my father very dearly. The perpetual contest of wills that marked my teenage years has passed and I am softened and saddened to see him so reduced. At the same time, I worry about Vanessa, who is only a few years older than me and has, for all intents and purposes lost her husband and become a full time nurse. I know that she is overwhelmed and teetering on the brink. 

There’s  a silence at the table. Talking to my Dad means screaming so that he can hear. Suddenly, he puts his hand over mine.

“What is it, Dad?” He smiles a little and says, very quietly,

“Nothing. I just wanted to touch you.

I put my other hand over his and it’s all I can do not to burst into tears.

He can’t be left alone because he’ll do some crazy thing like talking a neighbor into loaning him a chainsaw and then pruning a fruit tree nearly to death, while it’s in blossom. Door to door salesmen talk him into contracts to spray poison on the lawn or repave the driveway. He forgets to turn off burners.

Deafness and dementia combine to isolate him from everything. He isn’t taken seriously. People give up talking to him because he can barely hear. He puts up a fight and he doesn’t complain. He still paints landscapes, walks every day, reads the paper and forgets what he’s read a minute later. The thing is, he tries. He never quits trying. This is not Altzheimer’s. He is still in there.

I cannot begin to imagine the loneliness of it. And the thing I have always feared more than anything else is the loss of cognition. The indignity and the isolation of losing myself, losing my right to make my own decisions.  This is why I made the decision against whole brain radiation. While that decision may (or may not) shorten my years,  I cannot bring myself to volunteer for reduced mental capacity, memory loss and possible deafness. 

My father would never have volunteered for that, either.

DECISION

It was a scary decision. I wobbled back and forth weighing the risks. You might not believe this, but tumours on the brain are not nearly the fun they’re cracked up to be and I wondered if there was some little cell-sized smidgen left after the surgery. Whole brain radiation was insurance. And maybe I’d have gone for it if I hadn’t started researching and asking questions. 

I never leave well enough along, though. I trust my doctors and western medicine to be well-intentioned but it seemed to me that this particular procedure was much like trying to kill an invisible (and possibly imaginary) flea by driving a tank over my head. True that if there was a flea, it would probably die. But true also that I would be wearing some mighty deep tire tracks. 

It was cognitive impairment – almost a guaranteed side-effect and possible deafness that really put me off. I wasn’t fussy about permanent baldness.  Certainly the idea of being in Decadron psychosis wasn’t inspiring, either.

Finally, I announced to my G.P. that I’d decided not to undergo the treatment and was surprised when she smiled. She wouldn’t, of course, advise me one way or the other – but she was very enthusiastic about the flea and tank metaphor. And she said if she had to make the decision, she’d have to think very carefully about it. 

Yesterday, I steeled myself to tell the radiation oncologist – who didn’t utter a word of disagreement or warning but encouraged me, when I told him I planned to join a gym when my energy picked up a little. “One of the best things you could do for your recovery,” he said.

Well, blow me down. Where was all this when the treatment was matter of factly the standard way to go?

It’s been a long, nasty ride. As my friend Peter Sewell pointed out in his blog – there’s a big difference between surviving and living. Since September, I’ve been surviving. I’ve lost count of the X-rays & MRIs. And if I’d had one more chemo session, I’m not altogether sure I could have made myself show up for it. 

Now, there are only six more targeted radiation sessions to get through. They aren’t as bad – and I enjoy teasing the technicians. I’ve threatened to change the “Elmo Loves You” sticker on the big machine that hovers over me to a “Fu*k Elmo” sticker. 

Six more. And then, one step at a time, as I recover from cure-induced toxicity and exhaustion – I get to live life as myself. I won’t be the same person I was in August. And hospital tests and checks will be fairly frequent, but I can work on my very modest bucket list: walking the Frog Pond nature trail, sitting by the ocean, seeing friends, doing some creative work and coaxing my body back to health. 

Here’s to 2012. And to thinking for yourself.

MEDITATION VIA BOOT

I’ve always loved the saying: Want to make God laugh? Tell Her your plans. 

And since September when my plans – all of them, along with my illusions – have taken an ass kicking to end all ass kickings, I’ve been learning to live without plans. Not easy for someone like me who has always had a project or a plan on the drawing board or in progress. 

A subtle shift has occurred in the way I handle life. 

For example, New Year’s Eve, after a terrific dinner of lasagna, salad and a creamy lemon dessert, Wendy, Heather and I are comfortably ensconced in Wendy’s living room, reminiscing about old times, when the phone rings. Wendy’s friend, Janet, has just lost her husband to congestive heart failure. She is calling to ask Wendy to make phone calls to other members of their circle to tell them this very sad news. Around the same time, Heather’s daughter reports in on a serious falling out with her boyfriend. It’s as if the very air in the room has changed. Wendy is distraught; Heather is worried –all of us are thinking of how empty and alone Janet must feel. 

Sadness and trouble is with so many people lately that there’s barely time for a deep breath in-between tragedies and foul-ups.

Later in the week, I am talking to Ilga, whose life has been continuously disrupted by one emergency or another for months on end. We are talking about meaning in life – whether there is any, or whether it’s all just a meaningless crap-shoot. 

And that leads to discussion about living in the present moment and how suffering comes from wanting the present moment to be something, anything else. Ilga says, “I know this. I just don’t know how to do it.” It’s then that it occurs to me that I’ve begun to transition from a comfortable experience to a painful one (or vice versa) with much less resistance than ever before. 

It’s all about plans and expectations. Take away any notion of how long you’ll be on this earth, add to that the way the medical system springs schedule changes at the last minute and otherwise claims a large percentage of my time, and throw in the fact that I never know, day to day, whether I’ll be sick or well – and you have boot-in-the-butt practice in living in the Now. 

If I was healthy and expecting to live a long life, I could sit on a meditation cushion for the next ten years and conceivably never lose my impatience with change. Change would be disrupting my plans and believe me, it would piss me off. It would seem like the universe was out to get me. I would hang on by my fingernails, hating whatever was overturning my idea of what should be happening. And I would be miserable. 

Why is it that we think we have a right to be happy and untroubled. Why do we think that’s the norm and anything dark or painful is an aberration? Surely it isn’t because life experience tells us that.  It’s the hopeless clinging that causes us to suffer. It’s killing to think of the years I’ve wasted in pitched battle against the inevitable slings and arrows of life. 

Rumi said:

Welcome and entertain them all!

Even if they're a crowd of sorrows,

who violently sweep your house

empty of its furniture,

still, treat each guest honorably.

He may be clearing you out

for some new delight.

On a lighter note, Ilga once told me,(rightly) when she had edited a particularly bad essay of mine, that I “stink at polemic.” So this entry might, in fact, stink – but I wanted to get the thought down, so I beg your indulgence.

Now you can get back to your plans.