May 3, 2010
About a year ago, Kelly asked me to type up what I said at Treice’s funeral. It wasn’t until today that I could manage to re-read my writing and relive some of the feelings I was having a year ago. The words below are fairly accurate, but anything I adlibbed will obviously be missing. Anyways, here it goes…
Niki
_________________________________________________________________
After 23 years of a wonderful friendship it’s amazing to me how difficult it’s been to conjure up the words that describe how I felt, feel, about my best friend Treice. Here it goes…
‘“You’re the strangest person I ever met,” she said, and I said,“ You too.” And we decided to know each other a long time.’
Treice gave a painting to me a few years ago with these words; it shows two oddly figured people holding hands. The sentiment is completely true in how we felt when we first connected.
We met as young women at the age of 15.
And since then, we’ve only lived away from each other a total of two years. Even then, we remained in constant contact.
I feel lucky and privileged to have met a kindred spirit at such a young age.
She brought a feeling of security to me. I think the feeling was mutual. I didn’t feel so alone with my wacko thoughts anymore.
We could talk for hours about anything and everything and never felt scared about sharing our deepest thoughts, opinions, experiences, and MANY analyses of life.
We trusted each other like scuba divers: If one of us said we needed to go up for air, the other followed, without question.
When we embarked on a cross-country adventure to make our way on our own, needless to say our families were a little skeptical.
But the truth is, we inspired each other and supported each other and managed to survive our teens and 20’s with our friendship fully intact and deeper than ever.
I think one of the most beautiful aspects of our friendship was our ability to let go and let each of us develop our lives with new friends and boyfriends and eventually our husbands. When Treice and Kelly’s lives began to accelerate, I told her not to hesitate. When my husband, Dave, got sick (we had been separated for just over a year at that point), she told me to follow my heart. That was one of the greatest gifts she gave to me.
Although our lives over the past couple years have been mired in tragedy and sadness, we remained in tune with each other.
For whatever reason, these are some fun times Treice and I had together that come to mind,
Our “epic” 7-day journey down the coast to LA on the Green Tortoise and back on the Blue Goose
Treice honking the horn on my Dad’s boat and scaring the crap out of him
Skipping out on our bill at the Cottage Bistro (totally innocently) by dancing our way out of the restaurant
The Springsteen tour that Dave and Treice MADE me go on with them (well, actually I was totally into it, but not because of Springsteen, I got to hang out with my best buds)
Drinking on the edge of the Scarborough Bluffs, philosophizing at the ripe old age of 16 (15 for Treice)
Innocently jumping the queue at the passport office and making it in and out of there in under 45 min when everyone else ahead of us had been there for 5 hours already.
Barbie yelling out dance numbers and Treice making a dance to go along with each one; there must have been at least a dozen Steve Martin-like numbers Treice performed for us that night.
I dunno, I could keep going and maybe I will. If any of you have been around me in the past year (It’s now May 3 2010 as I type out what I said at the funeral nearly a year ago, I’m taking some creative liberty here), you’ll have noticed I talk about her and my husband a lot, at least it feels like a lot to me. Okay, back to the original program…
Gifts from Treice
Her life, her friendship, her insight,
Her gentle cajoling to get me to talk when she knew something was wrong
Kelly and his family
Little Max
Her humour, her smile
Her love
I gave Treice a magnet a few years ago with two old ladies, arm in arm, the same height, similar expressions on their faces, and it says “A friend, as it were, is a second self”
Throughout our friendship, she ALWAYS considered me. She ALWAYS included me. I miss that terribly.
Some of our friends shared their thoughts of what she meant to them:
Wonderful, truly unique
Exceptional
Straight forward
Humourous, always made us laugh
Vibrant
Smart
Strong
Beautiful
Honest
But somehow words aren’t enough to describe the essence of Treice. You had to know her.
I thank God for her.
I’m not a big believer but somehow I feel comforted to think she’s still with us, looking over us. Last summer (summer of 2009, more creative liberty here), I liked to think Treice and Dave were up there wheeling and dealing to get us one of the best summers for weather on record. Thanks guys!
I told a friend that I felt an entire volume of life was closed after losing Treice and my husband Dave in the past year and he said, “ I wouldn’t ever think of that volume of life as ever being closed. It’s the only thing you can actually say you have to open. The time you had with them can never be taken away”
I miss Treice so much and will forever remember her by opening that volume and re-reading and recounting her life and love.
Tuesday, October 12, 2010
Thursday, May 14, 2009
Barb Wilkins- Mondays with Treice
Mondays with Treice I will never forget the day Treice called and told me she had cancer. She was newly married and a new Mom and it didn't seem possible. I remember feeling numb. I remember feeling like my life, as I had known it was changed forever. My life? What about her life?This is not the way it was supposed to be. It was supposed to be early detection, treatment, cures and sighs of relief. Monday, for me became a special day. It was my day and I would spend many, many Mondays with Treice. She would plan a lot of her appointments on Monday, I think she liked my driving and she definitely liked riding in the car with the big pink flowers. The journey I took with this woman that I love and this family that feels like my family was rich and scary and full of laughter and tears. That will continue even though she isn't here to see it. I think she knows.One Monday I arrived at the house and Treice was not having a great day, she was in bed and dealing with a lot of pain. We didn't cry together much but I saw a sad look in her eyes and I asked her if she was having a sad day. She looked at me like I was crazy. She thought I had asked her if she was having a fat day. We laughed about that one for a long time. We played softball together for many years, Treice played first base and me on second. We always tried to make the double play and once and a while we pulled it off. Before every play we would look at each other and say in our best immigrant grandmother voice :"Alone, we are nothing- Together, we are SPECIAL!" I feel really grateful that we were able to share so many great times together. Although she thanked me often in the end I am the one who is thankful. I am so thankful that she let me in. Treice was an amazing woman, courageous and sweet and also one of the most stubborn, bluntest and funniest people I will ever know.
I will miss her dearly and think of her every time it's Monday or just feels like Monday.
I will miss her dearly and think of her every time it's Monday or just feels like Monday.
Tuesday, May 12, 2009
This was Bill Richie's gift of words....
I was just going to wing it.
At a certain point, I decided I was just writing down stuff that would be impossible to read, so I thought: screw it, I won't write anything down. But then I imagined Treice's reaction.
"You haven't got anything written down? BILL...!"
So, I rewrote. But I made it simpler than it was. So, if it's too simple...well, you know who to blame.
The other day when I went to see Treice, I told her something I'd been thinking about -- a very me thing to say to her, a very her thing to hear from me...and she kind of nodded at it, which was nice. What I wanted to tell her was that I didn't care how her appearance had changed...but it was for a special reason, that I didn't care. It wasn't just that I didn't, if you see what I mean; it was because I had an excellent reason not to, that made caring about that kind of silly. Because I think everyone has a kind of secret face, that's their real face...and the real face never changes anyway. Time may add wrinkles or grey hair, take away teeth or add mottling, to the public face -- but the real face is left completely untouched by such things, and incorruptible.
Here's how we come to see the secret face: in little distances, just a couple of inches, practically nose-to-nose. You can't even get a good look at it while you're standing up, ordinarily: you have to be lying down to really see it, because you have to let it fly up and fill the whole sky, round and unforgettable as the moon. Every parent's seen it, and every child...every husband, wife, boyfriend, girlfriend, most relatives, even some friends. More than anything else, I think, it's like entering a little room only big enough for two at a time...a room outside the whole rest of the ordinary day-to-day universe, where time can't fit because the door is too low for clocks to go under it, and the only music is the breath of those who love one another, and the lamp is always burning...and the door is never locked.
And we're the luckiest people in the world, who've been so privileged as to enter the little room, and I think we know it -- we know our loved one gives us something inside those short precincts of sight that can never be taken away from us, no matter what may happen later. Something of them that is unsummarizable, that can't be boiled-down, eroded, or rusted away. In ordinary life, people's faces are like sketches. Like thumbnails: we recognize them fast, and then go on about our business with them. But the secret face is different -- recognizing IT goes on endlessly, and our eyes don't even get tired.
But of course...in the normal course of events, then, I would have to admit that I never really saw Treice's secret face. Maybe for a minute or two, here and there...but probably not long enough at any given time to have it rise up in front of me like the constellations in the night sky.
In the normal course of events, that is. But that's where I'm luckier than I've got any right to be -- where we're all luckier than we've got any right to be.
Because I don't think she had any other face but that one.
In fact I think she often found this somewhat frustrating -- she just couldn't get the hang of keeping that secret face secret! And I used to get a certain amount of amusement from this, I have to confess -- at the way she just couldn't mask herself the way many of us can, and couldn't figure out what it was we all knew, that she didn't...but I'm grateful beyond words for that now, because it's given me something that even disease and death can't remove: a view of the little room, where the lamp is always lit, and the door is never locked.
Anyway it will never be locked by me. "Beyond words"...that about says it. I told Treice, I don't think I could ever have had an end-of-life conversation with her. Because I wouldn't have known where to begin. I wouldn't even have known how to choose the first word. I couldn't summarize her if I tried; she just fills the sky, for me.
For all of us, I think.
And I don't think a person can leave a more gracious legacy.
At a certain point, I decided I was just writing down stuff that would be impossible to read, so I thought: screw it, I won't write anything down. But then I imagined Treice's reaction.
"You haven't got anything written down? BILL...!"
So, I rewrote. But I made it simpler than it was. So, if it's too simple...well, you know who to blame.
The other day when I went to see Treice, I told her something I'd been thinking about -- a very me thing to say to her, a very her thing to hear from me...and she kind of nodded at it, which was nice. What I wanted to tell her was that I didn't care how her appearance had changed...but it was for a special reason, that I didn't care. It wasn't just that I didn't, if you see what I mean; it was because I had an excellent reason not to, that made caring about that kind of silly. Because I think everyone has a kind of secret face, that's their real face...and the real face never changes anyway. Time may add wrinkles or grey hair, take away teeth or add mottling, to the public face -- but the real face is left completely untouched by such things, and incorruptible.
Here's how we come to see the secret face: in little distances, just a couple of inches, practically nose-to-nose. You can't even get a good look at it while you're standing up, ordinarily: you have to be lying down to really see it, because you have to let it fly up and fill the whole sky, round and unforgettable as the moon. Every parent's seen it, and every child...every husband, wife, boyfriend, girlfriend, most relatives, even some friends. More than anything else, I think, it's like entering a little room only big enough for two at a time...a room outside the whole rest of the ordinary day-to-day universe, where time can't fit because the door is too low for clocks to go under it, and the only music is the breath of those who love one another, and the lamp is always burning...and the door is never locked.
And we're the luckiest people in the world, who've been so privileged as to enter the little room, and I think we know it -- we know our loved one gives us something inside those short precincts of sight that can never be taken away from us, no matter what may happen later. Something of them that is unsummarizable, that can't be boiled-down, eroded, or rusted away. In ordinary life, people's faces are like sketches. Like thumbnails: we recognize them fast, and then go on about our business with them. But the secret face is different -- recognizing IT goes on endlessly, and our eyes don't even get tired.
But of course...in the normal course of events, then, I would have to admit that I never really saw Treice's secret face. Maybe for a minute or two, here and there...but probably not long enough at any given time to have it rise up in front of me like the constellations in the night sky.
In the normal course of events, that is. But that's where I'm luckier than I've got any right to be -- where we're all luckier than we've got any right to be.
Because I don't think she had any other face but that one.
In fact I think she often found this somewhat frustrating -- she just couldn't get the hang of keeping that secret face secret! And I used to get a certain amount of amusement from this, I have to confess -- at the way she just couldn't mask herself the way many of us can, and couldn't figure out what it was we all knew, that she didn't...but I'm grateful beyond words for that now, because it's given me something that even disease and death can't remove: a view of the little room, where the lamp is always lit, and the door is never locked.
Anyway it will never be locked by me. "Beyond words"...that about says it. I told Treice, I don't think I could ever have had an end-of-life conversation with her. Because I wouldn't have known where to begin. I wouldn't even have known how to choose the first word. I couldn't summarize her if I tried; she just fills the sky, for me.
For all of us, I think.
And I don't think a person can leave a more gracious legacy.
Words for Treice
I want to leave the words I prepared for Treice's memorial service and will be taking what others expressed at that time and posting them.....
"I would first like to thank all of you for coming here today to celebrate Treice’s life. I would especially like to show my everlasting gratitude to her great and good friends who have helped her and Max and I in her final days with us.
This has been a difficult time for all of us. Treice was loved by so many, and loved me as no one has loved me before.
Her strength has inspired us and the take no bull attitude she learned from her dad will serve our family well for the years ahead.
I’ve been told that Treice was deserving someone like me for this time in her life and Max is my reward for being with her.
I would finally like to share a letter I wrote for her in November, although I didn’t give it to her until sometime in January after which she taped it to the mirror in our room.
A letter to my wife
This is something no one would ever want to write. The cruel fate of looking for you all my life, only to have this terrible sickness take you from me.
The fearlessness you have shown me in your day to day living will stay with me forever.
I cannot dwell on the things we would have done, but can remember the love/joy/freedom of the things we have done together.
Max will know all the love you have for him, as I have been entrusted to pass it down to him. Every crossroad we reach will bring the question, “What would Treice do?”, and knowing, we will do the right thing.
The loneliness of what you are facing is beyond any words I can offer, knowing I will have to face it myself some day will not help you or me. All I can hope for is you find an inner peace and know how much love surrounds you.
You don’t really know my thoughts on God, I hardly know them myself, but my hope is that we are all small pieces of one larger whole, with our own experiences, and when we leave this world we return to the larger thing we are a part of to share what we have learned.
I will continue to make you proud and will show Max how to be a good man. ( he knows already)
I know tears will come, many of them. I can’t say why they haven’t started yet.
Well, they have now…"
"I would first like to thank all of you for coming here today to celebrate Treice’s life. I would especially like to show my everlasting gratitude to her great and good friends who have helped her and Max and I in her final days with us.
This has been a difficult time for all of us. Treice was loved by so many, and loved me as no one has loved me before.
Her strength has inspired us and the take no bull attitude she learned from her dad will serve our family well for the years ahead.
I’ve been told that Treice was deserving someone like me for this time in her life and Max is my reward for being with her.
I would finally like to share a letter I wrote for her in November, although I didn’t give it to her until sometime in January after which she taped it to the mirror in our room.
A letter to my wife
This is something no one would ever want to write. The cruel fate of looking for you all my life, only to have this terrible sickness take you from me.
The fearlessness you have shown me in your day to day living will stay with me forever.
I cannot dwell on the things we would have done, but can remember the love/joy/freedom of the things we have done together.
Max will know all the love you have for him, as I have been entrusted to pass it down to him. Every crossroad we reach will bring the question, “What would Treice do?”, and knowing, we will do the right thing.
The loneliness of what you are facing is beyond any words I can offer, knowing I will have to face it myself some day will not help you or me. All I can hope for is you find an inner peace and know how much love surrounds you.
You don’t really know my thoughts on God, I hardly know them myself, but my hope is that we are all small pieces of one larger whole, with our own experiences, and when we leave this world we return to the larger thing we are a part of to share what we have learned.
I will continue to make you proud and will show Max how to be a good man. ( he knows already)
I know tears will come, many of them. I can’t say why they haven’t started yet.
Well, they have now…"
Tuesday, May 5, 2009
Sadest News
Treice has lost her battle. I was blessed to help her find her way at the end and will never forget who she was. On friday May 8th at 2pm we will gather to celebrate her life at First Memorial, 602 Kingsway, one block west of Fraser. We ask that you do not send flowers.
Wednesday, April 29, 2009
Monday, July 21, 2008
Tuesday, July 8, 2008
Attitude of Graditude
I'm grateful that Max has had his second birthday in good form.
I'm grateful for Kelly's consistent and constant love and support.
I'm grateful for the time I spent with my father.
I'm grateful for my longest friendship.
I'm grateful for the weather this morning.
I'm grateful for the trust I have in the surgeon.
I'm grateful for my mother's presence in my home and in my life.
I'm grateful for my little family.
I'm grateful for the worry dolls that I put under my pillow last night that allowed me to sleep the night before this big day.
I'm grateful for the view.
I'm grateful for the love of my Gramma and Babushka.
I'm grateful for the strength I have.
I'm grateful for my resiliance.
I'm grateful for raw and living foods and the way they make me feel.
I'm grateful for little things like the sound of Max's echo in the tunnel before the swimming pool. And the way he jumps in, fearless and goes way down and comes up with a smile on his face. I love the way he says 'helium' and I love the way he looks at neon lights.
I love the way I love him.
I'm grateful that I have this chance; the chance to take it out. Take it out of my body. Take as much as they can. Take it away. Less is better. I'll work with what's left. I'll get rid of it. But thank you, for taking this from me now.
Tuesday, June 24, 2008
Welcome Guest Blogger Bill Ritchie!
“Help The Bombardier”
The word, ladies and gentlemen, is quango.
I listen to a lot of radio, sometimes, and sometimes it's the same old thing, and sometimes it isn't. For example, once I found this real old dude on Vancouver radio, very religious, oddly personable...even lovable, and listened to him obsessively for a week or two. He's got like a three-hour show on NW or QM or something, on Sunday nights. Resonant, droning voice. He sounds tall. Old. Responsible.
Of course he's completely out of touch with everything.
And the one and only time I met Treice's oncologist Ken, I could've sworn he was that guy.
He loomed into the suddenly-tiny little white cube of the hospital room (with the yellow curtains, I think), and nodded at Kelly, and proceeded to have an eminently reasonable discussion with Treice about her treatment. I don't know if Kelly was intimidated. I'm pretty sure Treice was intimidated. And if they were intimidated, you know I was! Jesus, sometimes I think doctors are like cops: trained to keep objections to a minimum.
My usefulness (such as it is) comes on after that sort of thing is over, generally. Ken's giant dignified body ushered itself from the room, and ten seconds later I scratched my head and wondered aloud:
"Uh...what did that guy say, exactly?"
And Treice, with tears brimming in her eyes, said "See? SEE?!"
It was kind of like being in an episode of "Yes, Minister"...only, you know, with delightful cancer.
Old Ken didn't say a damn thing. Fully analyzed, I believe his remarks actually may have taken information out of the room. One thing I remember: he mentioned to Treice and Kelly that there was an alternative to the chemo drug they were using, that he couldn't speak to the effectiveness of particularly, but it wasn't covered by MSP so if they wanted it they'd have to go private, and pay for it themselves...and the cost of it was about $3000.00 per treatment. Which, I guess, meant after the full course of treatment the price tag would come down at...what? $30,000, $40,000? I remember gulping, and thinking I would totally lose on this episode of The Price Is Right...
Treice and Kelly just looked at each other. Their expressions said, plain as any two expressions I have ever seen in my life: "so why even tell us about it, then?"
After Ken had gloomed his way out, I thought this out loud as well. "Why did he even mention that? What was the point? I mean it isn't even like he said 'good treatment, too bad you can't afford it', he said something more like 'this treatment, in my opinion meh, but y'know if you really really want it...got thirty or forty grand?"
Treice, with the eyes: "See? SEE?!"
I swear, the religious radio dude seems more upfront about things. "Well, I'm not saying it's definitely true that Amy Grant's got the voice of an angel..."
So, Ken seems like a real swell guy, but then again seems doesn't even count in horseshoes and hand grenades...or even religious radio...and poor old Ken, he probably means so well, seems like such a nice old man who doesn't have cancer and can probably put his own odds of surviving the next ten years at somewhere over 95%, why I bet he's got a terrific cottage, with one of those really big Cadillac barbeques on the deck, and I bet his kids are all grown, now. I'm just saying, I don't hate the guy. He exudes likeability, in fact. But...
He no help with curve ball, you know?
So, seriously, no offense to Ken, but if I was in a room with him again I think I would start snapping shit out. "Say, would you mind explaining just why the FUCK YOU'RE BOTHERING TO MENTION THAT, KEN? Is it some sort of contractual obligation? Does Treice's teary nod constitute a verbal contract, should a Crown prosecutor ask you if you handed out full and complete information? What? Is it the ol' C.Y.A. in the cancer clinic? I mean naturally one hates to be fucking RUDE, but we don't workhere, know what I'm saying? This isn't Barney-Fucking-Miller, for us..."
Good God, friends of Treice, I was only there for like an hour! One time!
But there was so much snowin' going on, I felt like I was watching a documentary about Studio 54.
Bah. The word is quango, in case you didn't know. It's a bit of an oldie, as far as acronyms go: Quasi-Autonomous Non-Governmental Organization. This basically means: appointed people with no oversight. Not necessarily bad: you can certainly talk to them, petition them, have a free and frank exchange of ideas with them. But -- as anyone who's ever dealt with the Islands Trust knows -- after they've listened to you, then they do the talking, and there's no appeal. "Sounds great, Treice! But no." No word is ever so final. Down at B.C. Cancer, they're obviously just doing triage at this point, and it's so goddamn obvious: everybody is walking around in total denial about how much good this does. Deliriously, I imagine I see scenes from Star Trek IV swim before my eyes: "Good God, man, drilling holes in his head isn't the answer!" But where oh where is Dr. McCoy now, when we really need him?
Instead, it appears we're stuck with a very eminent and reassuring Doc Daneeka. You know, from Catch-22? And Treice is Yossarian.
And so here's the thing.
Quangoes can sometimes be good, and not just as Scrabble words. The Islands Trust, so lately impugned by me in this here blogpost, is an organization with a definite political goal (which I even mostly agree with) that carries that goal off handsomely. But there's politically good, and then there's politically good: and sometimes the people in the quango get the shit end of the stick. You know, politically.
There are people saying "thanks so much, but no thanks" to a second round of chemo.
There are people talking to their doctor about how they're going to change their diet, only to have their doctor tell them "That's nice YOU'RE AS GOOD AS DEAD THOUGH."
There are medical personnel who are, unbelievably, MEAN TO CANCER PATIENTS.
And: what's going on here, anyway?
Well, this is another political use of the quango, only it's the not-so-good kind. Because that "Quasi-" that comes before "Autonomous" makes for such lovely, lovely deniability that you can push off any old crap job into it. Because the people running the show on someone else's behalf aren't allowed to really run it, and the people on whose behalf they're running it never have to take any flak for it, and so it just keeps on rolling. Rolling over cancer patients, in this case. Why would a nurse ever be mean to, why would a doctor ever try to perform a hope-en-dectomy, on a patient? Only because that's what happens when people are forced to assume responsibility for very very bad shit that isn't actually their fault. Quite naturally, they start circling the wagons. What do you think the odds are, that any doctor or any nurse at B.C. Cancer -- Ken not excepted -- ever holds out any hope that their patients are going to live? It probably starts in the medical schools: "okay, if you happen to meet a person like this...don't tell them, but we might as well not even waste any time on them, but we will because otherwise we'd just have to straight-up start turning people away." And on into the clinics: "well, there is a treatment, but it wouldn't work, and anyway you couldn't afford it...best to keep using the treatments that won't work that are cheaper..."
Oh, sorry Ken: hurt your feelings?
I say this with complete respect for Ken, or at least all the respect I can muster: it must be really hard not to have your feelings hurt, in that job.
So, who could blame you if you took steps to avoid that?
I certainly couldn't.
Oh, except actually -- I can.
Blast you, Ken. You'd be the worst religious DJ ever. I just don't think your heart would be in it, frankly. "Odds are crap that God exists; guess we're on our own. Meanwhile here's a new one from Amy Grant." I mean I know you're a victim of the quango too, but maybe at some point it'd be appropriate to tell listeners that other stations are offering different programming? And not just say "well, you could always listen to this, but you haven't got the right kind of equipment to tune it in." Yes, we know it's a frustrating job. But why should Treice have to go and find out about DCA and wheatgrass and German clinics on her own? Why should she have to endlessly mess around with the shortwave and the Internet, just to tune in something other than your dignified Eeyore-like voice, just talking about rain all the time? Why? Why?
Why?
What kind of a show are you running, there, Aarfy? Why can't you just give her a big folder full of all kinds of information about the other stuff you're not allowed to provide, right when she walks in the door? Why can't you return her phone calls or e-mails? Why oh why won't you let her help the bombardier?
Oh God...how I wish a quango was a type of fruit.
Although I'm pretty sure I already know how it would taste.
Dear Treice: hi. I sort of wanted to trust B.C. Cancer to cure you, but they seem to have fatally screwed that particular pooch. So would it be all right if I just put my confidence in you, now? You, after all, have never let me down in the cancer-fighting department. You always keep swinging, somehow. You are a person a person could have faith in to actually do their job, and so...y'know...
I think somebody ought to give you a medal, or something.
Mushy stuff enclosed under separate cover,
Bill
I listen to a lot of radio, sometimes, and sometimes it's the same old thing, and sometimes it isn't. For example, once I found this real old dude on Vancouver radio, very religious, oddly personable...even lovable, and listened to him obsessively for a week or two. He's got like a three-hour show on NW or QM or something, on Sunday nights. Resonant, droning voice. He sounds tall. Old. Responsible.
Of course he's completely out of touch with everything.
And the one and only time I met Treice's oncologist Ken, I could've sworn he was that guy.
He loomed into the suddenly-tiny little white cube of the hospital room (with the yellow curtains, I think), and nodded at Kelly, and proceeded to have an eminently reasonable discussion with Treice about her treatment. I don't know if Kelly was intimidated. I'm pretty sure Treice was intimidated. And if they were intimidated, you know I was! Jesus, sometimes I think doctors are like cops: trained to keep objections to a minimum.
My usefulness (such as it is) comes on after that sort of thing is over, generally. Ken's giant dignified body ushered itself from the room, and ten seconds later I scratched my head and wondered aloud:
"Uh...what did that guy say, exactly?"
And Treice, with tears brimming in her eyes, said "See? SEE?!"
It was kind of like being in an episode of "Yes, Minister"...only, you know, with delightful cancer.
Old Ken didn't say a damn thing. Fully analyzed, I believe his remarks actually may have taken information out of the room. One thing I remember: he mentioned to Treice and Kelly that there was an alternative to the chemo drug they were using, that he couldn't speak to the effectiveness of particularly, but it wasn't covered by MSP so if they wanted it they'd have to go private, and pay for it themselves...and the cost of it was about $3000.00 per treatment. Which, I guess, meant after the full course of treatment the price tag would come down at...what? $30,000, $40,000? I remember gulping, and thinking I would totally lose on this episode of The Price Is Right...
Treice and Kelly just looked at each other. Their expressions said, plain as any two expressions I have ever seen in my life: "so why even tell us about it, then?"
After Ken had gloomed his way out, I thought this out loud as well. "Why did he even mention that? What was the point? I mean it isn't even like he said 'good treatment, too bad you can't afford it', he said something more like 'this treatment, in my opinion meh, but y'know if you really really want it...got thirty or forty grand?"
Treice, with the eyes: "See? SEE?!"
I swear, the religious radio dude seems more upfront about things. "Well, I'm not saying it's definitely true that Amy Grant's got the voice of an angel..."
So, Ken seems like a real swell guy, but then again seems doesn't even count in horseshoes and hand grenades...or even religious radio...and poor old Ken, he probably means so well, seems like such a nice old man who doesn't have cancer and can probably put his own odds of surviving the next ten years at somewhere over 95%, why I bet he's got a terrific cottage, with one of those really big Cadillac barbeques on the deck, and I bet his kids are all grown, now. I'm just saying, I don't hate the guy. He exudes likeability, in fact. But...
He no help with curve ball, you know?
So, seriously, no offense to Ken, but if I was in a room with him again I think I would start snapping shit out. "Say, would you mind explaining just why the FUCK YOU'RE BOTHERING TO MENTION THAT, KEN? Is it some sort of contractual obligation? Does Treice's teary nod constitute a verbal contract, should a Crown prosecutor ask you if you handed out full and complete information? What? Is it the ol' C.Y.A. in the cancer clinic? I mean naturally one hates to be fucking RUDE, but we don't workhere, know what I'm saying? This isn't Barney-Fucking-Miller, for us..."
Good God, friends of Treice, I was only there for like an hour! One time!
But there was so much snowin' going on, I felt like I was watching a documentary about Studio 54.
Bah. The word is quango, in case you didn't know. It's a bit of an oldie, as far as acronyms go: Quasi-Autonomous Non-Governmental Organization. This basically means: appointed people with no oversight. Not necessarily bad: you can certainly talk to them, petition them, have a free and frank exchange of ideas with them. But -- as anyone who's ever dealt with the Islands Trust knows -- after they've listened to you, then they do the talking, and there's no appeal. "Sounds great, Treice! But no." No word is ever so final. Down at B.C. Cancer, they're obviously just doing triage at this point, and it's so goddamn obvious: everybody is walking around in total denial about how much good this does. Deliriously, I imagine I see scenes from Star Trek IV swim before my eyes: "Good God, man, drilling holes in his head isn't the answer!" But where oh where is Dr. McCoy now, when we really need him?
Instead, it appears we're stuck with a very eminent and reassuring Doc Daneeka. You know, from Catch-22? And Treice is Yossarian.
And so here's the thing.
Quangoes can sometimes be good, and not just as Scrabble words. The Islands Trust, so lately impugned by me in this here blogpost, is an organization with a definite political goal (which I even mostly agree with) that carries that goal off handsomely. But there's politically good, and then there's politically good: and sometimes the people in the quango get the shit end of the stick. You know, politically.
There are people saying "thanks so much, but no thanks" to a second round of chemo.
There are people talking to their doctor about how they're going to change their diet, only to have their doctor tell them "That's nice YOU'RE AS GOOD AS DEAD THOUGH."
There are medical personnel who are, unbelievably, MEAN TO CANCER PATIENTS.
And: what's going on here, anyway?
Well, this is another political use of the quango, only it's the not-so-good kind. Because that "Quasi-" that comes before "Autonomous" makes for such lovely, lovely deniability that you can push off any old crap job into it. Because the people running the show on someone else's behalf aren't allowed to really run it, and the people on whose behalf they're running it never have to take any flak for it, and so it just keeps on rolling. Rolling over cancer patients, in this case. Why would a nurse ever be mean to, why would a doctor ever try to perform a hope-en-dectomy, on a patient? Only because that's what happens when people are forced to assume responsibility for very very bad shit that isn't actually their fault. Quite naturally, they start circling the wagons. What do you think the odds are, that any doctor or any nurse at B.C. Cancer -- Ken not excepted -- ever holds out any hope that their patients are going to live? It probably starts in the medical schools: "okay, if you happen to meet a person like this...don't tell them, but we might as well not even waste any time on them, but we will because otherwise we'd just have to straight-up start turning people away." And on into the clinics: "well, there is a treatment, but it wouldn't work, and anyway you couldn't afford it...best to keep using the treatments that won't work that are cheaper..."
Oh, sorry Ken: hurt your feelings?
I say this with complete respect for Ken, or at least all the respect I can muster: it must be really hard not to have your feelings hurt, in that job.
So, who could blame you if you took steps to avoid that?
I certainly couldn't.
Oh, except actually -- I can.
Blast you, Ken. You'd be the worst religious DJ ever. I just don't think your heart would be in it, frankly. "Odds are crap that God exists; guess we're on our own. Meanwhile here's a new one from Amy Grant." I mean I know you're a victim of the quango too, but maybe at some point it'd be appropriate to tell listeners that other stations are offering different programming? And not just say "well, you could always listen to this, but you haven't got the right kind of equipment to tune it in." Yes, we know it's a frustrating job. But why should Treice have to go and find out about DCA and wheatgrass and German clinics on her own? Why should she have to endlessly mess around with the shortwave and the Internet, just to tune in something other than your dignified Eeyore-like voice, just talking about rain all the time? Why? Why?
Why?
What kind of a show are you running, there, Aarfy? Why can't you just give her a big folder full of all kinds of information about the other stuff you're not allowed to provide, right when she walks in the door? Why can't you return her phone calls or e-mails? Why oh why won't you let her help the bombardier?
Oh God...how I wish a quango was a type of fruit.
Although I'm pretty sure I already know how it would taste.
Dear Treice: hi. I sort of wanted to trust B.C. Cancer to cure you, but they seem to have fatally screwed that particular pooch. So would it be all right if I just put my confidence in you, now? You, after all, have never let me down in the cancer-fighting department. You always keep swinging, somehow. You are a person a person could have faith in to actually do their job, and so...y'know...
I think somebody ought to give you a medal, or something.
Mushy stuff enclosed under separate cover,
Bill
Monday, June 23, 2008
Monday, June 16, 2008
Reclaiming Privacy on the World Wide Web
I love writing. I love writing in this blog whenever I get the chance. I've kept a diary many times over the years but never for very long. Except for when Anne and Emily (Anne of Green Gables and Emily of New Moon) inspired me way, way back. I kept a daily diary for at least two years in a row when those girls were in my life!
One of the reasons that I started this blog was to allow people to check-in with me instead of me reporting to them. I tend to 'report' on me, all the time.
"Now, let's go to Treice Backs with KCA News, for a special report on Treice Backs."
I like writing in this blog because it lets people know where I'm am in this journey without really reporting on the day to day. It gives some people courage and makes others afraid. It reminds people that life is short and it is, for some, quite the obsession to hear an inside voice. I realize however that there are gaps and that these gaps are concerning. I don't mean gaps between days of entries. I mean gaps in information. So what happens, quite naturally, when I make my way into the public or to see a friend is that I end up reporting on my situation.
A report or information based blog for me might be a frame by frame on recent appointments, prognosis' and treatments. This I fear would not only not yield fewer readers, but it might very well lead me to an even earlier death!
A lot of people call me to find out how I'm doing and to follow up on this appointment or that appointment. I'm usually so tired after an appointment that I just need to nap and process it all in my sleep. When I wake up, I tell my husband, and I usually tell my mom and my best friend on the same day. I also tell my step-mom and one other friend that I like to keep in the loop. By that point I'm tired again and need to go for a nap.
I guess in a way, it's like asking everyone I know to tell me in detail how their work day went. Most people just say it sucked or it was fine. My work is fighting cancer and it's rigorous and it sucks and it's fine.
Although I've never been quite the tonguewagger that Anne was, I've been talking about cancer for a long, long time now. Not only do I talk about it when I'm asked how it's going, I think I talk about it when I'm not asked about it. I also think about it, write about it and read about it. I shower with it, mother with it and sleep with it.
It's tough because I want to say "I'm fine". I want to talk about hand bags and haircuts and shoes instead. But I don't, but I do, I do! But I don't. I guess it depends on the day. Handbags and haircuts and shoes what a relief. Oh, handbags and haircuts and shoes who cares? Handbags and haircuts and shoes, oh my!
I don't want privacy; I want people to know. I really do. I want to keep thinking out loud and keep being creative. I want my cancer and my writing to continue to touch people. I'm too tired to know what I want. I'll keep writing but I may stop talking. If I stop talking, having a conversation with me will be like having a conversation with a pink elephant in the room and not talking about the pink elephant. That's what I'll do. Just a big smile.
Unless Oprah calls, then I'll talk. Or the CBC.
Or, a friend that wants to talk; someone who wants to know. That's okay; that's what I do. That's what we do.
Saturday, June 14, 2008
Cancer Fighting Weather
It's overcast and cold again. It's down right gloomy. I hear from friends and family and bus drivers and clerks and cashiers about how the weather is getting them down and I realize that that could be a large part of what I'm feeling too. It's easy to think however that it's the cancer.
My skin is always cold, ice cold; my finger tips not so nimble. Cancer generally has a hard time thriving in heat so I'd like to get to an infrared sauna this week. That might help. I'd like to be warm again. If I could just get my body warm, if I could only fall asleep, near a window, like a cat, and let the sun heat me, if I could only wake up with the sun on my face. It's coming soon I hear. I'll wait for it.
I've put a donation button on my blog and and I've had to think about criteria or "rules" for donating. All of my friends and all of my family and all of my community have already donated their love and their time and their money in order to help us live and save my life. The button comes with criteria I suppose because saving my life is exhausting and relentless and costly. How much is it worth? When do I stop trying? I don't think I do. Who does, who stops and when?
I met a woman in Florida who was trying to save her own life too. There are a lot of us. We're so tired. I wish someone would just through me that lifesaver already; the red one, the one I could clutch onto and lay my weary head upon; the one that would drift me back to warmth and normalcy, the one that would speak to me softly: "it's all over now, I'm here for you now; you've done a great job." Anyway, she told me she applied for 10 or 15 different credit cards and was approved for $ 43,000 worth of credit among about 8 or 9 cards. Only in America I thought.
I really thought that I might be back to work already but instead I've been approved for an indefinite leave. The way I say it is I have one chance to save my life and the rest of my life to work. Now is that time!
I guess the criteria is to:
1) Believe in me
2) Respect the choices and decisions I make to cure my cancer. These choices are well researched and the decisions are always difficult.
3) Believe in Kicking Cancer's Ass
4) Have extra cash to donate
If I had a friend with cancer right now, I would meet three of the criteria but I certainly wouldn't meet the last one! Nor would I meet the last one if I'd already donated.
My skin is always cold, ice cold; my finger tips not so nimble. Cancer generally has a hard time thriving in heat so I'd like to get to an infrared sauna this week. That might help. I'd like to be warm again. If I could just get my body warm, if I could only fall asleep, near a window, like a cat, and let the sun heat me, if I could only wake up with the sun on my face. It's coming soon I hear. I'll wait for it.
I've put a donation button on my blog and and I've had to think about criteria or "rules" for donating. All of my friends and all of my family and all of my community have already donated their love and their time and their money in order to help us live and save my life. The button comes with criteria I suppose because saving my life is exhausting and relentless and costly. How much is it worth? When do I stop trying? I don't think I do. Who does, who stops and when?
I met a woman in Florida who was trying to save her own life too. There are a lot of us. We're so tired. I wish someone would just through me that lifesaver already; the red one, the one I could clutch onto and lay my weary head upon; the one that would drift me back to warmth and normalcy, the one that would speak to me softly: "it's all over now, I'm here for you now; you've done a great job." Anyway, she told me she applied for 10 or 15 different credit cards and was approved for $ 43,000 worth of credit among about 8 or 9 cards. Only in America I thought.
I really thought that I might be back to work already but instead I've been approved for an indefinite leave. The way I say it is I have one chance to save my life and the rest of my life to work. Now is that time!
I guess the criteria is to:
1) Believe in me
2) Respect the choices and decisions I make to cure my cancer. These choices are well researched and the decisions are always difficult.
3) Believe in Kicking Cancer's Ass
4) Have extra cash to donate
If I had a friend with cancer right now, I would meet three of the criteria but I certainly wouldn't meet the last one! Nor would I meet the last one if I'd already donated.
Thursday, June 5, 2008
The DW File
"Hello, Mrs. Backs, I've been looking for you. I like what you've done with your desk, have you got a minute?"
"The Boardroom right?"
"No, no. Here is fine. I really like these black and whites, did you take these shots?"
"Yeah, yeah I did. Years ago now. This is my favourite one here. The way the edges of that old brick factory are glowing, it reminds me of pipe cleaners or something. I love the broken windows too. That one there, over that door is actually stained glass. And you see that, that's a guy in there, probably a squatter or something. It's like he's staring right at me, but I don't think he knew I was taking the shot."
"Indeed, he looks like he's thinking about his next step. It's got sort of an emerald tinge to it; how did you do that."
"Oh that, right, yeah. It was black and white film but I developed it on colour paper. It tends to do that. Anyway, you wanted to see me about something?"
"Yes Treice. We're concerned that you're not really staying on task here; you're a little distracted and I'd like to get you back on track."
"What do you mean? Are you talking about the garden? I did the garden. I've got the wheatgrass sprouting and there are already four or five trays growing. The buckwheat grouts and the sunflowers are sprouting too. I did the arugula, the kale, the spinach, the peas, the celery and the cucumber. Am I missing something?"
"The garden is quite beautiful Treice, you've really found something that you believe in and I'm so impressed. It's not about that though Treice, it's that file, you know the DW file."
"Which DW file?"
"The DW 05 07 08 file. The one you're sitting on right now. The one you've been obsessed with all week. The one that's dirty because you've been reading it in the garden."
"Oh, THAT DW file, this one you mean, this one right here, the one I'm sitting on, yes. Do you need it? Here you go..."
"Look Treice, why are you so obsessed with this, why does it interest you? Your situation is totally different than his, totally different, you know that don't you?"
"So you too eh? No, I don't know that and I don't believe that. You think our situations are totally different. How do you know that?"
"Well I know that because he worked here, he worked here at the Hammer and the Healer, you know that."
"So what if I die? What will we be then?
"What are you talking about, what do you mean?"
"I mean everyone keeps saying that my situation is totally different than his and I don't see it that way. Now everyone says we're different but If I die, everyone will say we were the same.
It's like this: 'Oh, those two, right, what did they have? They had cancer. or 'Oh those two, right, what did they die of? Oh, they died of cancer' You see, the same situation!"
"But you're not dead Mrs. Backs."
"No, I'm not. But you must know, our situations are the same. He was my only friend who truly understood me. He was loyal in a way that none of my friends can be now. He knew precisely what I felt and why I felt it and how it felt. He's the only one in my group who actually knew, word for word, heartbeat for heartbeat, sweat bead for sweat bead, tear drop for tear drop what my relationship with death was like. He met me in the black hole, we danced there."
"I saw you guys in the Meditation Room a couple times Treice, but you hardly talked to him, I never saw you guys talking."
"We didn't have to. Even a stranger with cancer is a soul mate."
"Wow. Oh, the other thing I wanted to talk to you about. You seem to be on-line all the time. We don't really operate like that around here. You've missed your meditation sessions and your walks and your garden will suffer if you keep this up. Does this have something to do with you searching for soul mates?"
"Well, while I don't wish cancer on any of my friends....it sure would be nice...."
"TREICE!"
"I know, I know. Cancer joke. Bad one. Look, there are thousands of people on-line with cancer. I've made friends with them. They help me through the those minutes when I'm on my knees, they help me in my hours of sorrow, and the know about the days that I cannot define. They're holding on to the same bridge, they've been walking around with the same gun to their head."
"But they're in England and Russia and Australia."
"But they know."
I miss you Dave Watson. Thank you for your sturdy fight.
"The Boardroom right?"
"No, no. Here is fine. I really like these black and whites, did you take these shots?"
"Yeah, yeah I did. Years ago now. This is my favourite one here. The way the edges of that old brick factory are glowing, it reminds me of pipe cleaners or something. I love the broken windows too. That one there, over that door is actually stained glass. And you see that, that's a guy in there, probably a squatter or something. It's like he's staring right at me, but I don't think he knew I was taking the shot."
"Indeed, he looks like he's thinking about his next step. It's got sort of an emerald tinge to it; how did you do that."
"Oh that, right, yeah. It was black and white film but I developed it on colour paper. It tends to do that. Anyway, you wanted to see me about something?"
"Yes Treice. We're concerned that you're not really staying on task here; you're a little distracted and I'd like to get you back on track."
"What do you mean? Are you talking about the garden? I did the garden. I've got the wheatgrass sprouting and there are already four or five trays growing. The buckwheat grouts and the sunflowers are sprouting too. I did the arugula, the kale, the spinach, the peas, the celery and the cucumber. Am I missing something?"
"The garden is quite beautiful Treice, you've really found something that you believe in and I'm so impressed. It's not about that though Treice, it's that file, you know the DW file."
"Which DW file?"
"The DW 05 07 08 file. The one you're sitting on right now. The one you've been obsessed with all week. The one that's dirty because you've been reading it in the garden."
"Oh, THAT DW file, this one you mean, this one right here, the one I'm sitting on, yes. Do you need it? Here you go..."
"Look Treice, why are you so obsessed with this, why does it interest you? Your situation is totally different than his, totally different, you know that don't you?"
"So you too eh? No, I don't know that and I don't believe that. You think our situations are totally different. How do you know that?"
"Well I know that because he worked here, he worked here at the Hammer and the Healer, you know that."
"So what if I die? What will we be then?
"What are you talking about, what do you mean?"
"I mean everyone keeps saying that my situation is totally different than his and I don't see it that way. Now everyone says we're different but If I die, everyone will say we were the same.
It's like this: 'Oh, those two, right, what did they have? They had cancer. or 'Oh those two, right, what did they die of? Oh, they died of cancer' You see, the same situation!"
"But you're not dead Mrs. Backs."
"No, I'm not. But you must know, our situations are the same. He was my only friend who truly understood me. He was loyal in a way that none of my friends can be now. He knew precisely what I felt and why I felt it and how it felt. He's the only one in my group who actually knew, word for word, heartbeat for heartbeat, sweat bead for sweat bead, tear drop for tear drop what my relationship with death was like. He met me in the black hole, we danced there."
"I saw you guys in the Meditation Room a couple times Treice, but you hardly talked to him, I never saw you guys talking."
"We didn't have to. Even a stranger with cancer is a soul mate."
"Wow. Oh, the other thing I wanted to talk to you about. You seem to be on-line all the time. We don't really operate like that around here. You've missed your meditation sessions and your walks and your garden will suffer if you keep this up. Does this have something to do with you searching for soul mates?"
"Well, while I don't wish cancer on any of my friends....it sure would be nice...."
"TREICE!"
"I know, I know. Cancer joke. Bad one. Look, there are thousands of people on-line with cancer. I've made friends with them. They help me through the those minutes when I'm on my knees, they help me in my hours of sorrow, and the know about the days that I cannot define. They're holding on to the same bridge, they've been walking around with the same gun to their head."
"But they're in England and Russia and Australia."
"But they know."
I miss you Dave Watson. Thank you for your sturdy fight.
Tuesday, June 3, 2008
An Oncologist and A Psychiatrist Walk Into a Room
I ran into my old oncologist in the hallway at the clinic yesterday. She's the one that said I was cancer-free when I wasn't. Ahh Christina, how I love thee.
I was on my way to see my Psychiatrist. She's the one who started crying about my situation in a session.
While she cried she wiped her nose a lot and apologized profusely. In that moment of irony, I tried to comfort her, to hold and protect her from what I've been through, from what I know. There really is no need for someone to truly know my personal hell. I told her it was okay, and not to worry, I'd be okay. I told her that honestly, this was really one of the better reactions I'd had since I started telling people about my prognosis. Recognizing how sad this is and then crying as a result of your brain having processed how sad this is, is truly a reaction with a good dose of verisimilitude. This I like; I told her; this is better and more natural than some of the reactions I've seen, and I've seen a good number of them.
So after our brief counselling session, (I didn't charge her) we got back to me and my situation.
It was awkward.
Anyway, when I saw my old oncologist, I threw my hands up at her from the other end of the hallway. She must have known that meant "what's going on here? Get down here and talk to me." She came quickly. She must have known the mood I was in because the first thing she said was "now, don't....".
We began with a friendly but fiery conversation in a loud whisper. It must have looked to passerby like we were engaged in a small game of Charades, but we carried on this way as there were other cancer patients around and we didn't want to put them in a position of unease. The position for instance where one is fighting for their life and needs the help of their oncologist; that uneasy position.
"What kind of place is this?" I said in a loud whisper throwing the hands up again. "Why isn't Ken responding to my emails? I'm bleeding, he's dictated the wrong information into my file and he neglected to tell me about a Phase II Cervical Cancer trial, this is important Christina..."
"I know, I know" she said in calm, contemplative whisper. I'm just about to tell one of patients that they don't have too much longer. "CHRISSS TINA," I whisper-shouted and grabbed her hand. "Just try, I said, try telling him that he's living with cancer. Don't tell him he's dying of cancer. Tell him what to expect Christina. Tell him about the other resources he has, just try it. See what happens Christina", I whisper-begged.
I have a new plan though. I'm going to cure myself. And when I do, I'm going to go to Christina's office and sit her on her rolling stool. With her stethoscope dangling in the valley of her skirt, I'll bring her close and whisper in her ear. I'll ask her to run away with me. Come with me Christina, come to the light side. Come and open up a business with me where we treat people and not their disease. You can be the doctor and I'll be the executive assistant slash counsellor. We can wear silk scarves to work everyday and we can play Lavern Baker in the reception room. We can open up in Yaletown Christina, we will have comfy chairs for waiting and we will make it our policy to touch every patient when they come in. To touch their hands, and their shoulders and their hearts. We'll welcome them in to large rooms with the linens blowing through the open windows. We'll tell them about fear and we'll tell them about those black-hole days. We'll help them to manage, we'll help them to get through it all. Come work with me Christina, you look so sad here. Come with me, will get a spot in Yaletown. I will be your teacher and you can be mine.
Anyway, I finally made it to the Psychiatrist that day and she asked me to tell her what my rant was. So I did. She said she didn't think the doctors had a lot of experience with people like me. What? I'm thinking, this always happens to me in my life. People like me? What does she mean? What am I like? She said "well, you know, telling them what to do..."
She went on to say that not everyone is like me, a lot of people aren't in to alternative treatments and a lot of people, simply accept that they're going to meet their God. "Oh my God!", I said. "They don't have any choice here Judith, no choices. If they had more resources, more choices, more support, they'd chose the next choice over meeting with their God 30 or 40 years early; I'm sure of it." It's not just me. The psychiatrist knows it. She can't say much.
I'll invite her too, to work with Christina and I in Yaletown that is.
I was on my way to see my Psychiatrist. She's the one who started crying about my situation in a session.
While she cried she wiped her nose a lot and apologized profusely. In that moment of irony, I tried to comfort her, to hold and protect her from what I've been through, from what I know. There really is no need for someone to truly know my personal hell. I told her it was okay, and not to worry, I'd be okay. I told her that honestly, this was really one of the better reactions I'd had since I started telling people about my prognosis. Recognizing how sad this is and then crying as a result of your brain having processed how sad this is, is truly a reaction with a good dose of verisimilitude. This I like; I told her; this is better and more natural than some of the reactions I've seen, and I've seen a good number of them.
So after our brief counselling session, (I didn't charge her) we got back to me and my situation.
It was awkward.
Anyway, when I saw my old oncologist, I threw my hands up at her from the other end of the hallway. She must have known that meant "what's going on here? Get down here and talk to me." She came quickly. She must have known the mood I was in because the first thing she said was "now, don't....".
We began with a friendly but fiery conversation in a loud whisper. It must have looked to passerby like we were engaged in a small game of Charades, but we carried on this way as there were other cancer patients around and we didn't want to put them in a position of unease. The position for instance where one is fighting for their life and needs the help of their oncologist; that uneasy position.
"What kind of place is this?" I said in a loud whisper throwing the hands up again. "Why isn't Ken responding to my emails? I'm bleeding, he's dictated the wrong information into my file and he neglected to tell me about a Phase II Cervical Cancer trial, this is important Christina..."
She asked me, in a curious whisper, if Ken "discharged" me. In a screaming whisper I said "What, discharged?" What do you mean by discharged?"
Isn't that just for the Army? I wondered.
While Ken didn't use the word discharged, he did say there was nothing else they could do for me and then didn't respond to my emails. The really incredible thing is that he ignored the one in which I asked him if he would be a part of my healing team; the one where I told him of my plans to eat raw and living foods and to take DCA. The one where I said in order to save my life I needed the support of many players, including the Clinic. I asked him to confirm that he was on side with that. He didn't respond.
Anyway, it when on like this for about 5 minutes. I asked her if they had a plan for people who were no longer receiving treatment from the clinic. I said a plan would be helpful and it might include things like when to come back for blood work and at what intervals, and who would review the blood work with the patient. How about the same inclusion for scans. Why not send the patient home with the knowledge that they're "living with cancer "and not "dying of cancer", how about explaining what to expect and how to manage. Ever type of cancer has been beaten, every type."I know, I know" she said in calm, contemplative whisper. I'm just about to tell one of patients that they don't have too much longer. "CHRISSS TINA," I whisper-shouted and grabbed her hand. "Just try, I said, try telling him that he's living with cancer. Don't tell him he's dying of cancer. Tell him what to expect Christina. Tell him about the other resources he has, just try it. See what happens Christina", I whisper-begged.
I have a new plan though. I'm going to cure myself. And when I do, I'm going to go to Christina's office and sit her on her rolling stool. With her stethoscope dangling in the valley of her skirt, I'll bring her close and whisper in her ear. I'll ask her to run away with me. Come with me Christina, come to the light side. Come and open up a business with me where we treat people and not their disease. You can be the doctor and I'll be the executive assistant slash counsellor. We can wear silk scarves to work everyday and we can play Lavern Baker in the reception room. We can open up in Yaletown Christina, we will have comfy chairs for waiting and we will make it our policy to touch every patient when they come in. To touch their hands, and their shoulders and their hearts. We'll welcome them in to large rooms with the linens blowing through the open windows. We'll tell them about fear and we'll tell them about those black-hole days. We'll help them to manage, we'll help them to get through it all. Come work with me Christina, you look so sad here. Come with me, will get a spot in Yaletown. I will be your teacher and you can be mine.
Anyway, I finally made it to the Psychiatrist that day and she asked me to tell her what my rant was. So I did. She said she didn't think the doctors had a lot of experience with people like me. What? I'm thinking, this always happens to me in my life. People like me? What does she mean? What am I like? She said "well, you know, telling them what to do..."
She went on to say that not everyone is like me, a lot of people aren't in to alternative treatments and a lot of people, simply accept that they're going to meet their God. "Oh my God!", I said. "They don't have any choice here Judith, no choices. If they had more resources, more choices, more support, they'd chose the next choice over meeting with their God 30 or 40 years early; I'm sure of it." It's not just me. The psychiatrist knows it. She can't say much.
I'll invite her too, to work with Christina and I in Yaletown that is.
I'd Rather Live in His World than Live Without Him in Mine
I was on the phone the other day with my landlord. We talked about the garden and we talked about my situation. At one point he said "oh that baby, that baby must just be your whole world."
When I got off the phone I thought about how I wished that was so. On most days, I just watch his world from mine. My world is a lot about me and a lot about cancer.
I remember these same feelings as a new mom. I was diagnosed when Max was 8 months old. When he was born, I remember thinking that he would come first from now on. We were just getting used to that when I was diagnosed, and since then, I've put myself first. While it's necessary, and it's what it is, and it means that putting me first means that he'll come first again, it doesn't always feel right.
I met someone at the pool the other day who said he understood. He said his mother died of Leukimia when he was 7. He said it was a long battle and she was in bed a lot when he was a kid. He told me he thinks about her everyday and he can't help but wonder.
I just shook my head. I just shake my head at that
Friday, May 30, 2008
The Plan - Part I
DCA (dichloroacetate) is a cheap and simple molecule that has been used for a number of years to treat rare metabolic diseases in children. In January of 2007, Dr. Evangelos Michelakis of the University of Alberta discovered that DCA had the ability to shrink cancer tumours in rats up to 100% in some cases, and in as little as 5 weeks.
Dr. Michelakis discovered that DCA "turns on" the mitochondria in cancer cells despite the long held belief that the mitochondria in cancer cells suffered irrevocable damage. With the mitochondria turned on, "the DCA re-activates the apoptosis mechanism", or the suicide mechanism in cancer cells and as a result, they die off rapidly.
I imagine Dr. Michelakis and his colleagues had quite the celebration that night. Finally, the cure for cancer.
Unfortunately, the doctor's smile may have turned to a frown when he found that DCA was not patentable as a molecule. There was no incentive for private companies to spend the millions of dollars needed to get DCA approved as a cancer treatment by Health Canada or the FDA. .
So when Dr. Michelakis' first paper came out explaining the astonishing effects of DCA on tumours in rats and why no one would support its development, cancer patients continent-wide were flooding cancer centres with calls about DCA. People with all stages and types of cancer were phoning in on their knees, begging for human trials to be approved.
When none of the cancer centres responded, people starting purchasing the compound and making DCA at home; people started "dealing" in DCA all over the world. On certain sites, people were petitioning for DCA and on other sites you'd find people begging for it. People were offering their left overs to those who were desperate.
So, a year and half after Dr. Michelakis' research room revelry, we now have (created of course, of the people, by the people, and for the people - despite it being a Canadian descovery) the DCA Site (http://www.thedcasite.com/) and Buy DCA.com (http://www.buydca.com/?gclid=CMqg06v40JMCFQwxiQodeUpTiA) amongst many other DCA related sites.
Despite its world wide web presence, the majority of cancer patients know nothing about it because it hasn't been approved for Phase I clinical trials in the States or Canada. It's effectiveness in clinical trials, can only be summarized by Phase II trials (Phase I trials merely determine dosage) and we're simply not there yet.
If the cure for cancer is in a simple molecule, a simple pill, and not in expensive radiation equipment, chemical therapy and 12 hour surgery, something mighty is going to go down!
I found out about DCA in January from a friend of mine who told me that her and her husband had seen it on TV and read an article about it. I went straight to my "alternative" cancer doctor and said "tell me where I can get this "CDA" stuff in Vancouver." He said "I don't know anything about "CeeDA", but I can refer you to a Doctor in Kits who can get DCA for you."
Since then, I found a centre in Toronto who has received approval from the Ontario Health Board to prescribe DCA and monitor its results. I'm currently taking DCA and they are monitoring me closely. We shall see.
I wish I was a rat, I wish I was a rat, I wish I was a rat...
Dr. Michelakis discovered that DCA "turns on" the mitochondria in cancer cells despite the long held belief that the mitochondria in cancer cells suffered irrevocable damage. With the mitochondria turned on, "the DCA re-activates the apoptosis mechanism", or the suicide mechanism in cancer cells and as a result, they die off rapidly.
I imagine Dr. Michelakis and his colleagues had quite the celebration that night. Finally, the cure for cancer.
Unfortunately, the doctor's smile may have turned to a frown when he found that DCA was not patentable as a molecule. There was no incentive for private companies to spend the millions of dollars needed to get DCA approved as a cancer treatment by Health Canada or the FDA. .
So when Dr. Michelakis' first paper came out explaining the astonishing effects of DCA on tumours in rats and why no one would support its development, cancer patients continent-wide were flooding cancer centres with calls about DCA. People with all stages and types of cancer were phoning in on their knees, begging for human trials to be approved.
When none of the cancer centres responded, people starting purchasing the compound and making DCA at home; people started "dealing" in DCA all over the world. On certain sites, people were petitioning for DCA and on other sites you'd find people begging for it. People were offering their left overs to those who were desperate.
So, a year and half after Dr. Michelakis' research room revelry, we now have (created of course, of the people, by the people, and for the people - despite it being a Canadian descovery) the DCA Site (http://www.thedcasite.com/) and Buy DCA.com (http://www.buydca.com/?gclid=CMqg06v40JMCFQwxiQodeUpTiA) amongst many other DCA related sites.
Despite its world wide web presence, the majority of cancer patients know nothing about it because it hasn't been approved for Phase I clinical trials in the States or Canada. It's effectiveness in clinical trials, can only be summarized by Phase II trials (Phase I trials merely determine dosage) and we're simply not there yet.
If the cure for cancer is in a simple molecule, a simple pill, and not in expensive radiation equipment, chemical therapy and 12 hour surgery, something mighty is going to go down!
I found out about DCA in January from a friend of mine who told me that her and her husband had seen it on TV and read an article about it. I went straight to my "alternative" cancer doctor and said "tell me where I can get this "CDA" stuff in Vancouver." He said "I don't know anything about "CeeDA", but I can refer you to a Doctor in Kits who can get DCA for you."
Since then, I found a centre in Toronto who has received approval from the Ontario Health Board to prescribe DCA and monitor its results. I'm currently taking DCA and they are monitoring me closely. We shall see.
I wish I was a rat, I wish I was a rat, I wish I was a rat...
Tuesday, May 27, 2008
Quackery
I often wonder what the aliens would think if they arrived on earth after a future apocalypse. These days, I wonder what they would think about all the women they'd find with no breasts; just scars. I wonder if they would recognize them as part of our race.
In their search for answers, they would likely find the women who had had mastectomies and implants but had no nipples; the smooth new breasts of a mannequin. And then, they would find the women with mastectomies and implants and tattooed nipples.
Would they find the cancer in autopsy and wonder why the breasts were removed; hacked off? Would they wonder why we treated the tumour and not the body? Would they wish they had got to us sooner, to tell us, to let us know what they know?
Recently, I took my Mom to a support group for young women with metastasising cancer. I was glad to learn when we got there that "young women" pretty much applied to women in their thirties. There were twelve of us there. Eleven with breast cancer; and me.
"They've decided to take off the other breast" she said. "They've got to take the breasts off" another said. "The Tamoxifen has been really hard on me" she said as she stared into her lap. "I'm finding it really hard to be at work" another one said. "I'm really afraid of what I will feel like when I look down; I'm terrified, this is appalling." she said. "I've been coming to this group since my mastectomy in 2001, my cancer has returned." she said.
Another women talked about her cats; she said one of her cats was sick and died. She realized after her mastectomy how nice it would have been to have her cat around.
I tried to offer my own fears and the sense of horror I had at times. "I have an opportunity to research a surgery in Germany." I told them as I wiped the rain off my face. "They would take everything out, including my bladder and rectum. They would sew up my bum. I would wear two colostomy bags." They really listened in. "I'm afraid of existing like that." I said.
They wondered if the cancer would be gone after that horror. I could only tell them what the German Doctor told me: "maybe."
When we left, the lady who talked about her cats a lot gave us a picture of her cats.
The next day the facilitator called me at home to thank me and my mother for joining the group. She said she was sorry there were "no other cancers" in the room. She said that last week there were "a couple colon cancers and a lung cancer"and that those groups are naturally more diverse. She thanked me for trying to empathize with them and for speaking so eloquently. She said she was sorry for my situation, that it was grim. She invited us back.
We didn't go back. Maybe we'll try another group.
Monday, May 26, 2008
Sunday, May 25, 2008
This Tumour of Mine Longs to Hold Me
I am beginning to think that my tumour is my mini-me; my alter ego. It is so oppositional in every way.
To avoid the probe of the papsmear it devilishly tucked its feet up and curled itself away three times. It offered only the cancer-free cells for testing, yielding negative results and took the time it needed to nuture and propogate, to deepen and breed.
Even at the biopsy, it's self-willed ways irked the oncologists. They scratched at the tumour nearly 8 times, (all the while telling me I was so strong and so brave and that they were almost done), before they got the sample of its 8cm breadth that would finally reveal it's type and character; adeno carcinoma.
It endured 35 rounds of radiation and two rounds of deep penetrating radiation (Brachytherapy), where it faced radiation pellets head on, in the ring for 36 hours. After that it merely skulked away for long enough to impregnate the nearby lymph node and returm to centre cervix in bloom. During this fight, it vengefully resisted the Cisplatin by sending swelling and rash to all my extremeties, including my throat and tongue, deeming me allergic to the family of chemo drugs specific to a cervical tumour.
In our second attempt to treat the cancer and prolong my life we tried Paclitaxol and Carboplatin, a distant cousin to Cisplatin. The tumour casually layed back and allowed the chemo to nibble at its toes; his body stretching, pulsing and bloody.
While I generally consider myself more altruistic than black hearted, I chuckle (believe it or not, yes, with all my whining, I still chuckle) at its counteraction and polarity.
As the doctors have recently told me there is nothing else they can do for me or my tumour, I can only believe that as I learn may out of my oppositional nature, so too, will the tumour.
Friday, May 23, 2008
The Hammer & The Healer
"I know, I know - the boardroom right.? I'll see you there in a couple of hours, I need to finish my chanting for this morning."
"Ms. Backs, NOW!"
"Okay, okay jee-Zuss."
"Have a seat, please. You're joined by the panel this morning. You remember Hope? There are a few issues on the table this morning. First off, your morning chant. It's distruptive to the entire team, but mostly to you. You must change your chant or stop chanting immediately."
"What is this a performance review or something? You're the one who told me to use the Meditation Room whenever I wanted, but now you want to tell me how to use it. I knew it, every job is the same. They tell you what to do and when to do it, they run your life, measure your performance. Why is it that I keep coming around to the idea of quitting this job? Huh? What is it with The Hammer and The Healer anyway? This is the fourth or fifth time in a year that I felt like this."
"Ms Backs, there are rules here. The Meditation Room is to be used alone each morning for half an hour before you start your day. As explained to you when you started here, it is to be used only for positive reinforcement and healing. It is meant to bring to you a level of awareness that will help with your overall happiness and will strengthen your immune system. For the past few days, you've been inviting Death in to the room, staying for at least 4 hours and chanting 'I'm gonna die, I'm dying, I'm gonna die, I'm dying, dying, dying, dead' over and over and again. What part of that exericise is following the rules Treice?"
"Yeah, well, whatever. You guys are not the boss of me."
"We are here to help you and as you know, that is very different than 'being the boss of you.' Do you want to die? Do you know what dying people want?"
"Thanks, yes, I saw that book on my desk. I suppose if someone is really dying, then they want to die. If someone is not really dying, they want to live. Simple. I can't see why that book is over 300 pages; dying people want to live. It's like writing a book titled "What Hungry People Want", um, duh?
"Do you want to die Treice, are you really dying?"
"TREICE! I asked you a question! Answer me!"
"No, I don't want to die. But I can think of one really good reason to die."
"Oh? What's that?"
"I wouldn't have to come to work anymore!"
"Ha, ha, very funny. Seriously, now."
"No, I don't want to die, but I feel like I'm dying, dying inside, I can't seem to turn it around. I'm desperate to not die and I can't find the way to stay; the way to life. This job, this saving my life job is taking a toll on me and I'm sick and very, very tired of it all. I know that you're here to help and I appreciate you, I need you guys. I'm sorry about the re-hires. I didn't mean to bring Death back but I couldn't help it. Despair too; they're sharing a desk. I need your help, please help me. I'm desperate, this is not fair, this is killing me. I need help. Please help me."
"Treice, you have become a very intergral part of our team and we need you, and we need your help too. You are perect in everyway, you are beautiful just as you are. When you close your eyes, who is smiling at you Treice? Who would smile at you if you could close your eyes and have people smile at you every time, who would it be?
"My Father, my dad; I miss him and love him deeply"
"Good, who else?"
"My Gramma and my Babushka, I miss them too, I didn't say good-bye properly."
"Good, who else?"
"My Mother, my Husband, my Son."
"And?"
"My friend Niki, um, my gurus...Gabor and Nirmal. And well, you guys, I guess."
"How would you like if all of us held hands for you, and formed a circle around you, and smiled at you, every time you closed your eyes? Would you like that? Would that help you to heal? Would it ground you and make you strong? Would it shift your awareness and make you feel safe? Would it remind you that you are meant to live? Would it give you the strength to get through each day, would it help you breathe? Would it help to shrink the tumour?"
"Yes, yes it would."
"Well than that's what we'lll do Treice. What else do you need?"
"I need that operation you were telling me about, the one that Hope performs."
"The lobotomy?"
"No, not the lobotomy, you idiot. Although....that could work too, less thinking. Less thinking is good."
"I know the one, you mean the one where she manipulates the eyes so that they face inward? That one is performed in the Meditation Room and it takes about 36 hours. When you're done, you will only be able to see internally, you will only be able to scan your body and your mind, you will assess how you are feeling and let yourself be; there will be no more clutter for you Treice, just calm."
"Yes that's the one. I want that one. But how will I see my work, how will I work, how will I manage, how will I make the coffee?"
"Like we told you, this is your work Treice and you will manage brilliantly; and you're not supposed to drink coffee!"
"Ms. Backs, NOW!"
"Okay, okay jee-Zuss."
"Have a seat, please. You're joined by the panel this morning. You remember Hope? There are a few issues on the table this morning. First off, your morning chant. It's distruptive to the entire team, but mostly to you. You must change your chant or stop chanting immediately."
"What is this a performance review or something? You're the one who told me to use the Meditation Room whenever I wanted, but now you want to tell me how to use it. I knew it, every job is the same. They tell you what to do and when to do it, they run your life, measure your performance. Why is it that I keep coming around to the idea of quitting this job? Huh? What is it with The Hammer and The Healer anyway? This is the fourth or fifth time in a year that I felt like this."
"Ms Backs, there are rules here. The Meditation Room is to be used alone each morning for half an hour before you start your day. As explained to you when you started here, it is to be used only for positive reinforcement and healing. It is meant to bring to you a level of awareness that will help with your overall happiness and will strengthen your immune system. For the past few days, you've been inviting Death in to the room, staying for at least 4 hours and chanting 'I'm gonna die, I'm dying, I'm gonna die, I'm dying, dying, dying, dead' over and over and again. What part of that exericise is following the rules Treice?"
"Yeah, well, whatever. You guys are not the boss of me."
"We are here to help you and as you know, that is very different than 'being the boss of you.' Do you want to die? Do you know what dying people want?"
"Thanks, yes, I saw that book on my desk. I suppose if someone is really dying, then they want to die. If someone is not really dying, they want to live. Simple. I can't see why that book is over 300 pages; dying people want to live. It's like writing a book titled "What Hungry People Want", um, duh?
"Do you want to die Treice, are you really dying?"
"TREICE! I asked you a question! Answer me!"
"No, I don't want to die. But I can think of one really good reason to die."
"Oh? What's that?"
"I wouldn't have to come to work anymore!"
"Ha, ha, very funny. Seriously, now."
"No, I don't want to die, but I feel like I'm dying, dying inside, I can't seem to turn it around. I'm desperate to not die and I can't find the way to stay; the way to life. This job, this saving my life job is taking a toll on me and I'm sick and very, very tired of it all. I know that you're here to help and I appreciate you, I need you guys. I'm sorry about the re-hires. I didn't mean to bring Death back but I couldn't help it. Despair too; they're sharing a desk. I need your help, please help me. I'm desperate, this is not fair, this is killing me. I need help. Please help me."
"Treice, you have become a very intergral part of our team and we need you, and we need your help too. You are perect in everyway, you are beautiful just as you are. When you close your eyes, who is smiling at you Treice? Who would smile at you if you could close your eyes and have people smile at you every time, who would it be?
"My Father, my dad; I miss him and love him deeply"
"Good, who else?"
"My Gramma and my Babushka, I miss them too, I didn't say good-bye properly."
"Good, who else?"
"My Mother, my Husband, my Son."
"And?"
"My friend Niki, um, my gurus...Gabor and Nirmal. And well, you guys, I guess."
"How would you like if all of us held hands for you, and formed a circle around you, and smiled at you, every time you closed your eyes? Would you like that? Would that help you to heal? Would it ground you and make you strong? Would it shift your awareness and make you feel safe? Would it remind you that you are meant to live? Would it give you the strength to get through each day, would it help you breathe? Would it help to shrink the tumour?"
"Yes, yes it would."
"Well than that's what we'lll do Treice. What else do you need?"
"I need that operation you were telling me about, the one that Hope performs."
"The lobotomy?"
"No, not the lobotomy, you idiot. Although....that could work too, less thinking. Less thinking is good."
"I know the one, you mean the one where she manipulates the eyes so that they face inward? That one is performed in the Meditation Room and it takes about 36 hours. When you're done, you will only be able to see internally, you will only be able to scan your body and your mind, you will assess how you are feeling and let yourself be; there will be no more clutter for you Treice, just calm."
"Yes that's the one. I want that one. But how will I see my work, how will I work, how will I manage, how will I make the coffee?"
"Like we told you, this is your work Treice and you will manage brilliantly; and you're not supposed to drink coffee!"
Friday, March 21, 2008
Two Deaths, A Wedding and A Pregnancy In 60 Days
Max was conceived on a Wednesday between flying in from Prince George on Tuesday, and flying out to Toronto on Thursday to spend time with my Gramma in her last days. My father knew I was pregnant; this brought him some joy and great sadness; as it did me. He died 40 days after Max was concieved.
Thursday, March 20, 2008
2 Funerals and A Wedding in 60 Days
Kelly and I got married on October 8th 2005. We could not have known then, that what most couples experience in years of marriage, would hit us like a bag of sand falling from the sky within 60 days of our wedding. We could not have known then that we would have an enormous toll taken on us. I feel sad for the absence of fancy and free.
Tuesday, March 18, 2008
2 Funerals in 30 Days
I'd like to start by thanking all of you for being present to honor our Grandmother, our mother, our cousin, our aunt, our friend and although she was an only child, our sister of all sisters. And also, for being present to honor an awareness of the emotions and the memories that we've all been experiencing around the passing of Margaret Villeneuve.
At my Grandmothers 65th Birthday Party, my mother made a speech that made a reference (albeit a comical and not so positive reference) to her punctuality or lack of it. She was presented with a beautiful chime clock to assist her in being more punctual. I would like to offer that this time, and to this destination she's arrived on time.
I suppose that with so many questions and curiosities around death, we may suggest that a timely arrival be defined unequivocally by the preciousness of a very full, very long and very benevolent life. To experience Margaret's very full and very long life, we need only close our eyes and place her image before us to feel the vibration and the colour of her entire being.
Last week, my cousin Paula painted my Gramma's fingernails. Pink; the colour of a young girl's heart.
As she did so, I had an image in my mind of my Grandmother at the age of 84, just before she died. I saw her on a beautiful wooden park bench; her face toward the buttery sun; the red and gold leaves chattering in fall fashion all around her.
I place next to her my Grandmother at the age of 10. They lean into one another and they hold each other's soft hands. They are matched in their beliefs and their thoughts about life. The 10-year-old Gramma is sorry to hear about what she's endured over the next 74 years but she's not surprised.
I like to lengthen the bench and add a Gramma between them for each decade of her life. Now the bench is filled; a 10 year old Margaret, a 20 year old Margaret, a 30 year old Margaret, a 40 year old Margaret, a 50 year old Margaret and a 60, 70, and 84 year old Margaret.
When I do, the park bench begins to reflect her strength in character; it shows a progression, that she's always moved forward. My Gramma's very full and very long life was also content. As each of the Gramma's chat with each other on the bench, they discover their pains and their lessons; they listen and they smile and they know one another. The youngest Margaret must have known that she was meant for a life of perseverance; the oldest Margaret had come out victorious because of that perseverance.
My own memories of my Grandmother are very bright. You know they say that the reason that Grandparents and Grandchildren get along so well is because they have a common enemy! She never said a harsh word to me; she never used my first name in combination with my middle and last name in anger. When I think of her now I can smell her and I can see her behind the steering wheel of many a car. I see bubbles blowing from her mauve lips. I hear her voice, scratching at the silence and carving out a shape.
Our relationship was never still for we traveled the highways each weekend to visit the friends and family she loved so dearly. Sometimes I think that if it weren't for her bum leg, the two of us would have traveled in an Indian Motorcycle; me in the sidecar of course!
Margaret Villeneuve was a lighthouse. And all of us here who are related to her either by blood or by love are lighthouses too. We are lighthouses for we are grounded, we are in position, we help others to find their way and we embody light. While my Gramma has come through many storms, she always kept her lighthouse windows clean. Her clean windows meant that she never complained; she was always illuminated in our presence; when we glided into her territory she would keep us safe for the night and she helped us to project our own light.
It may be true that we have all just come through a storm of emotion and memory around Margaret's passing. To honour her and to be certain that she may find each one of us and feel the power of our light, let us clean our windows as the day and our lives go on so that we may begin to shine again.
We love you Gramma. Please kiss your husband and your son for us.
At my Grandmothers 65th Birthday Party, my mother made a speech that made a reference (albeit a comical and not so positive reference) to her punctuality or lack of it. She was presented with a beautiful chime clock to assist her in being more punctual. I would like to offer that this time, and to this destination she's arrived on time.
I suppose that with so many questions and curiosities around death, we may suggest that a timely arrival be defined unequivocally by the preciousness of a very full, very long and very benevolent life. To experience Margaret's very full and very long life, we need only close our eyes and place her image before us to feel the vibration and the colour of her entire being.
Last week, my cousin Paula painted my Gramma's fingernails. Pink; the colour of a young girl's heart.
As she did so, I had an image in my mind of my Grandmother at the age of 84, just before she died. I saw her on a beautiful wooden park bench; her face toward the buttery sun; the red and gold leaves chattering in fall fashion all around her.
I place next to her my Grandmother at the age of 10. They lean into one another and they hold each other's soft hands. They are matched in their beliefs and their thoughts about life. The 10-year-old Gramma is sorry to hear about what she's endured over the next 74 years but she's not surprised.
I like to lengthen the bench and add a Gramma between them for each decade of her life. Now the bench is filled; a 10 year old Margaret, a 20 year old Margaret, a 30 year old Margaret, a 40 year old Margaret, a 50 year old Margaret and a 60, 70, and 84 year old Margaret.
When I do, the park bench begins to reflect her strength in character; it shows a progression, that she's always moved forward. My Gramma's very full and very long life was also content. As each of the Gramma's chat with each other on the bench, they discover their pains and their lessons; they listen and they smile and they know one another. The youngest Margaret must have known that she was meant for a life of perseverance; the oldest Margaret had come out victorious because of that perseverance.
My own memories of my Grandmother are very bright. You know they say that the reason that Grandparents and Grandchildren get along so well is because they have a common enemy! She never said a harsh word to me; she never used my first name in combination with my middle and last name in anger. When I think of her now I can smell her and I can see her behind the steering wheel of many a car. I see bubbles blowing from her mauve lips. I hear her voice, scratching at the silence and carving out a shape.
Our relationship was never still for we traveled the highways each weekend to visit the friends and family she loved so dearly. Sometimes I think that if it weren't for her bum leg, the two of us would have traveled in an Indian Motorcycle; me in the sidecar of course!
Margaret Villeneuve was a lighthouse. And all of us here who are related to her either by blood or by love are lighthouses too. We are lighthouses for we are grounded, we are in position, we help others to find their way and we embody light. While my Gramma has come through many storms, she always kept her lighthouse windows clean. Her clean windows meant that she never complained; she was always illuminated in our presence; when we glided into her territory she would keep us safe for the night and she helped us to project our own light.
It may be true that we have all just come through a storm of emotion and memory around Margaret's passing. To honour her and to be certain that she may find each one of us and feel the power of our light, let us clean our windows as the day and our lives go on so that we may begin to shine again.
We love you Gramma. Please kiss your husband and your son for us.
Monday, March 17, 2008
The Funeral
I’d like to start by thanking each of you for being here to experience Boris Vlasenko, his life and his ways. Perhaps to you he is your oldest friend, your lover, your newest friend, a part of your family, your friend’s father or simply, the man whose being and vibration you’ve come to honor; just for today. My father always said that if in a life time, a man could count his friends on one hand, he could count himself lucky. I’d like to suggest that my father was beyond lucky; for his life, his perseverance and his charm were born of sheer effort and intention.
My Dad knew that he was blessed for being loved and liked by so many, but, like the rest of us, he could never put his finger on the reasons why. As I called each of you to tell you he had passed away, many of you shared your thoughts about him with me. You used words like unique, special, witty, influential, neat, intelligent and compassionate. I would like to offer those compliments to him today.
Among these great compliments, none of you mentioned that he was bigger than a building. As a child, I thought he was. How unsettling it was to pass a building with him and see him glide through it inches below the door frame. As my depth perception and reality matured I realized of course, that he wasn’t as big as a building but I did go on to win all school yard bets about whose Dad could beat up whose Dad, or whose Dad was bigger than whose Dad.
When my Dad arrived to pick me up at school, we all watched him coming down the hall in slow long legged strides towards me. When he would bend at the torso to pick me up, it seemed to take so long for his face to finally connect with mine, and when it did, all the kids could feel his love.
Before Boris died he wished that his life and his death would come together like rain drops hitting a river. Today I seek solace in knowing that it did.
Boris was a lover of cities; from the ghosts of his heritage in Leningrad and Kiev to the billboards in Chicago, the daily death of chickens in Kensington Market, the crisp white concrete Rues of Montreal, to the smoke stacks and broken warehouse windows of Boston, he loved the city and the shot; for photography captivated him for many years
Through his lens, I see him at the top of Coney Islands’ Ferris Wheel; one of his favourite spots. At the peak of its cycle, he turns in slow motion to suck in the magic around him; like the Chinese man who could suck up the sea; my father sucked up life. As the wheel drops and stops at each level he feels no lower or higher than before; he is merely grateful for the change in perspective. I’d like to offer that like rain drops hitting a river, Boris has simply come to a new spot on his Ferris wheel.
Boris was a custodian of all memories. He kept them clean and colorful and ready to be pulled from the archives of his mind on a dime. When he shared his memories, he used his tongue to polish them as they came to life and made noise among us.
My father was a teller of jokes; while his repertoire included the standard knock knocks, and “a guy walks into bar…”, he could also sing Jingle Bells in Russian without cracking up and was never afraid to embarrass himself in the name of humour.
Boris is the owner of many a lesson. He was his own teacher and among many lessons he came to love the delicacy of humble pie. Towards his last days with us, he asked that his ego be pushed aside in the name of truth and he wanted to contribute more by faith and kindness than by smartness.
My father admired characters in fiction for he knew that if he hadn’t met them all, they all lived inside of him. He was touched that so many authors could write about him so accurately.
My Dad was a builder of families, one that became two and two that became one. My brother Jonas, my father’s wife Maria, my mother and my husband Kelly are united through him now.
My Dad was a thinker, a believer and a fighter; he was bigger than a building.
My Dad knew that he was blessed for being loved and liked by so many, but, like the rest of us, he could never put his finger on the reasons why. As I called each of you to tell you he had passed away, many of you shared your thoughts about him with me. You used words like unique, special, witty, influential, neat, intelligent and compassionate. I would like to offer those compliments to him today.
Among these great compliments, none of you mentioned that he was bigger than a building. As a child, I thought he was. How unsettling it was to pass a building with him and see him glide through it inches below the door frame. As my depth perception and reality matured I realized of course, that he wasn’t as big as a building but I did go on to win all school yard bets about whose Dad could beat up whose Dad, or whose Dad was bigger than whose Dad.
When my Dad arrived to pick me up at school, we all watched him coming down the hall in slow long legged strides towards me. When he would bend at the torso to pick me up, it seemed to take so long for his face to finally connect with mine, and when it did, all the kids could feel his love.
Before Boris died he wished that his life and his death would come together like rain drops hitting a river. Today I seek solace in knowing that it did.
Boris was a lover of cities; from the ghosts of his heritage in Leningrad and Kiev to the billboards in Chicago, the daily death of chickens in Kensington Market, the crisp white concrete Rues of Montreal, to the smoke stacks and broken warehouse windows of Boston, he loved the city and the shot; for photography captivated him for many years
Through his lens, I see him at the top of Coney Islands’ Ferris Wheel; one of his favourite spots. At the peak of its cycle, he turns in slow motion to suck in the magic around him; like the Chinese man who could suck up the sea; my father sucked up life. As the wheel drops and stops at each level he feels no lower or higher than before; he is merely grateful for the change in perspective. I’d like to offer that like rain drops hitting a river, Boris has simply come to a new spot on his Ferris wheel.
Boris was a custodian of all memories. He kept them clean and colorful and ready to be pulled from the archives of his mind on a dime. When he shared his memories, he used his tongue to polish them as they came to life and made noise among us.
My father was a teller of jokes; while his repertoire included the standard knock knocks, and “a guy walks into bar…”, he could also sing Jingle Bells in Russian without cracking up and was never afraid to embarrass himself in the name of humour.
Boris is the owner of many a lesson. He was his own teacher and among many lessons he came to love the delicacy of humble pie. Towards his last days with us, he asked that his ego be pushed aside in the name of truth and he wanted to contribute more by faith and kindness than by smartness.
My father admired characters in fiction for he knew that if he hadn’t met them all, they all lived inside of him. He was touched that so many authors could write about him so accurately.
My Dad was a builder of families, one that became two and two that became one. My brother Jonas, my father’s wife Maria, my mother and my husband Kelly are united through him now.
My Dad was a thinker, a believer and a fighter; he was bigger than a building.
Saturday, March 15, 2008
Dear Max
When I was pregnant with you we were so excited about having a baby, having a family. We talked about you every hour and we listened to you every minute. Because you were standing up inside my womb, we had to have a C-Section instead of a natural birth. I was devestated and relieved all at once.
It was 8:23 in the morning when you finally joined us on this side. I was behind a blue curtain and couldn't see or touch you for what seemed like an hour; but it was only minutes before your Dad brought you to me. While I waited for you, I was dubious. In my distortion, I heard a cat and asked the doctor if there was a cat in the room. He said no Treice, that's not a cat, that's your son. I said "are you sure? It sounds like a cat." He said he was sure. Believe it or not, I kept pressing the issue.
When your Dad brought you to me I held you and smiled. To date, this was the most surreal moment in my life. While most non-parent adults [like your Dad and I in the moments before your arrival] have seen babies, not all of us have seen newborns. And while we thought we were having a baby, we realized, in our first sleep deprived 57 hours that we had a newborn, and not a baby. I hope you too learn some day that these are two very different species. You became a baby soon enough, thank you.
I was so curious about you. A lot of women told me their stories of love and lights, and peace and understanding, and warmth and glowing this and shining that at their births, but not me. Nope, just intense curiosity. I wanted to put you on my tongue like a lozenge and figure you out slowly; I tried to meet your darting dark eyes and look deep into them to see if there was a brain in there or the moving parts of a clock. I wanted to feel for your ribs and see if your skin stretched around them like mine does. I wanted you to tell me how it felt to be resting on me instead of in me. I wanted to know who you were and who you might become. And I wanted to know who I was and who I might be with you in my life.
In the hospital room, your Dad slept on the floor and I got the hospital bed. You slept in a clear plastic rectangluar bin. At night, we would take turns walking you, feeding you , holding you and lgetting to know you in the hospital hallways. Your Dad thought he had it rough until he saw a Dad with new born twins crying at the same time! When it was my turn, I sang the only song that I could think of singing. "From this moment, I will never let you go". That was the title and only line, and I sang it over and over again; more like a chant. That night, at about 8:23, your parents were born.
It was there that we first discovered your feet. They appeared to be the size of a small boy, maybe in Kindergarten or Grade 1. I asked the doctor if they were too big. He said "well, they're generous."
You are 20 months old now and I've been singing to you since I wrote my chant. Sometimes, I sing the old favourites like Frere Jacques (by the way it's 'sonner a matine', not 'semma lemma teema', like I thought), and Hush Little Baby. And other times I sing the ones I've been making up since you were born like 'There's Another Human Being In the Bedroom', or 'His Name is Max and He Doesn't Like to Relax', or 'From This Moment I Will Never Let You Go'.
These days you talk about trucks and tractors and firetrucks. You love the sound of ambulances and airplanes and you eat mostly blueberries and Sunny Boy Organic Whole Wheat Waffles. After you eat, you hold your wrist with one hand, extend your middle finger and ask for 'won mo waffle.' You love the Butterfly Kiss and the Eskimo Kiss (although we're not allowed to call it that in 2008; it's a Nose Kiss), and you never leave me without blowing me a kiss through your tiny fingers. You've just planted peas, parsley, onions and pumkins in the garden. Your Dad bought you a baby watering can, and each morning you wake your Dad up to water them with you.
When I ride you around on my bike you say "Lally Bop" or "Ready, bump!" When you say 'pool', we think you're saying 'poo' and get excited that you're telling us you need to go! When we put you on the toilet instead of taking you to the pool, you drop your lower lip in disgust of your parents and say "I don wan it." Yesterday you said "comfortable" and I believe that tomorrow, you just might say "I didn't want scrambled, I prefer fried, but thanks for your effort Mom."
When we get to a locked door at home or elsewhere you say "Mommy needs key."
My dear Max, you are the key to all the locked doors in my world.
Love,
Mom
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