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

Vacation - Leaving Cancer Behind

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.

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.

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.

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..."

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