Nov 052014

hey – to anyone who may still be out there.
It has been a very very long time. Sorry about that.
And given the nature of this blog, I realize that for some people my extended silence may be viewed in fairly tragic terms.
Sorry if I caused anyone to wander down that dark road unnecessarily.
I guess I needed to go off the grid for 4 or 5 years.
I can hammer out another post at another time to try to explain why.

But tonight, for whatever reason, I was thinking about this blog and decided to do a bit of CPR on it.

So here’s the thing.
A TON of things have changed since I last posted here. One of which is I now have a dog. It has been so long since I last posted that my dog is now 3 and a half years old. And I adore him. He is my a) money pit and b) mental health saviour.
Every day when I wake up, I bend down and pet my dog and he is happy, happy, happy. He wags his tail and he is excited about what adventures we may have today.
In contrast to me.

So tonight, just a few minutes ago, we were walking through the November deluge of rain, and he was happy as a clam, and oddly, I was happy as a clam to be walking him through the deluge.
But I realized that perhaps one of the reasons I have been blog-phobic over the last few years is I thought as soon as I finished chemo my life would be all sunshine and rainbows and smooth sailing.
And it turns out, I have the same migraine inducing challenges post chemo as anyone else in the western world – except probably the 1%.
I guess I have been struggling with how to process that in my own head and how to communicate that to the larger world without sounding like a complete jerk.

As the hound and I were walking through the rain tonight, I was thinking about a scene in the Sopranos, where Tony is having an affair with a woman from Eastern Europe. She is fairly working class and has had a leg amputated and walks with a prosthetic and is completely unlike any of the other women he has dalliances with.
At some point he is talking about his life and she says something like “you (north) americans… you always expect to be happy. Why would you expect that?”
And while I may have just butchered a very interesting moment in American television, I think the sentiment comes through.
And I wonder why I can’t just get up every day and be grateful I am not dead – in spite of the odds.
I’m not sure having angst about not being grateful enough helps me feel, well, grateful.
But this is part of what I am struggling with.

But I have a fabulous dog who is happy all the time and he is a great role model for me and he makes me smile in spite of myself, so maybe I am on the right track and it’s all about the baby steps.

Good wishes to anyone still paying attention.

Nov 072010
Oct 092010

I support Freedom to Read. Maybe being part of a minority that has had to fight censorship makes this a pretty big deal for me.

I am proudly anti-censorship.

And this is my website.

Mine.

It is one of maybe a billion on the internet.

You, therefore, as a surfer, have maybe a billion choices of where you might go and what you might read.
If what I say offends you and your desire to censor others and your need to control things beyond your control, I recommend you grow up, or go to a site more suited to your less than grown up sensibilities and abilities to problem solve..

I’ve been through some stuff. I operate from a belief that my experiences might be of value for others going through similar stuff, because when I was going through them, I couldn’t find anyone who would say how it was or that it might get better.
Therefore, shutting up is the opposite of what I am willing to do when it comes to some of the major issues I have dealt with in the last few years.

Sorry that rubs you the wrong way, but I suggest you spend your internet hours elsewhere. Ya know, if you can’t stand the heat, yada yada…

How about you do that?
And just leave me alone?

Feb 032010

three-amigos-party-sept-2006-007

This post is a long time overdue.

On some level, I have been waiting for the right elements to come together, so I could put this together as well as can be. I have been waiting to get some pictures so I could embed them in this post. I still don’t have the pictures. And I don’t seem to be sleeping, and things Catherine-related seem to be occupying my mind, so here I am.

I’ve thought about the process of writing this post for quite some time. I’ve tried to anticipate in advance just how candid and exposed I wish to be with the big old world about this.

I can’t say just how that will go, because, even after two months of trying to work through the details, I still have no idea what I will say here. What is there to say? Why, there is the need to say everything and the need to say nothing, because how can I ever, really, explain.

Without meaning to sound maudlin or self-indulgent, I don’t really think I have met anyone who knows how I feel, because how could they? Just like I have no idea how anyone else is feeling, except for what I imagine they might be feeling. But I am still imagining.

So, the nuts and bolts, the meat and potatoes, of this thing is that my…. ex-girlfriend, very dear friend and a bunch of other things I don’t have words for, died in a plane crash off Saturna Island on November 29/2009. There is a lot written on the internet about that. It was in the Globe and Mail, on the CBC website, it was everywhere. It was a big news story. You can google it.

There is something very strange about losing a loved one and having that loss be national news. On one hand, people around you are perhaps more kind, because everyone knows a lot, real or imagined, about the situation. It also means that you are confronted with the facts of your loss over and over and over and at times when you may not be expecting it, like sitting at work or a diner and glancing at a newspaper. It also means that some people will make a point of speaking to you about the details they have heard on the news, whether they are part of that world or not. It means your grief is news, and that makes a hard process more than a little strange.

One of the weird aspects of all this has been the internet. Because Catherine was not a very cyber-ish gal, she was much more in person, in the flesh, and it’s strange to see how her death has been handled by the internet. I mean, how much the internet has been a tool that allowed people to meet or converse or grieve, in a way that would have been much more difficult without it. Maybe that’s irony. I hear people always think things are ironic when they are actually just odd coincidences, and I don’t want to make that embarrassing mistake right now. But if the situation was different and the roles were somehow swapped, it’s unlikely that Catherine would have relied on the internet for information and communication the way many of us did for her death. She wasn’t a Facebook-y sort of gal.

So, Catherine died and I’ve had about 2 months to start processing that, and yet I find myself not quite up to the task. I raise my hand in unabashed admittance that I am in a profound state of denial. I quite literally can’t imagine never seeing Catherine again. It simply makes no sense to me, so, it seems I don’t believe it. I hear denial is a bad coping mechanism, but for right now, it’s what I have to work with. It will all turn into some sort of train wreck at some point, and that will be ugly but right now, that’s what I am doing. The closest I have come to dealing with it was when I was really sick with the flu a couple of weeks ago. I was too sick to sleep, and I ended up laying in bed, staring at the ceiling, letting some tiny speck of it all seap in.

I suppose it’s rude of me to be charging ahead and not giving you the back story, the history, the where it all began.

The world of Spike and Catherine began at a Hallowe’en dance in 1985. We danced together.

I don’t really dance.

It started something.

I was seeing someone at the time who, in retrospect was probably suffering from borderline personality and who treated me in ways that probably qualify as abusive. Catherine was horrified by how this woman treated me, and actually drilled it through my thick melon that I deserved to be treated better than that.

To every woman I ever dated who thought I expected to much, I say, take it up with Catherine. Seriously.

No one had ever treated me as well as Catherine did. She found out what my favorite flowers are and made a habit of having bouquets delivered to my home. No one has ever done that. She would take me out for brunches of eggs benedict and mimosa’s. I had never had a breakfast that was more complicated than bacon and eggs. I could go on, but the point is, she looked after me, and no one had ever done that before. She put great thought and effort into it, and it was completely and utterly about me, not what her last girlfriend had liked so I would probably like it, too. Catherine had a way of paying attention and making you believe you were worth it. I haven’t had a lot of that in my life.

We went out, and we broke up and we kept the parts of our relationship that we liked and made ourselves friends. For 25 years, we were there in each other’s lives.

When I knew I had to have this big spooky surgery for what might turn out to be cancer, but I was pretty sure it wasn’t, Catherine was out of town, on vacation with her partner. A mutual friend was picking them up at the airport. I told him, before he picked them up, “You can’t tell Catherine about the surgery and all that crap, not when she first gets home.” And, he’s a good guy, so he didn’t. I spoke to her about it a couple of years ago, told her I had told our friend he shouldn’t tell her. Not like she couldn’t know because that is obviously stupid, but she had just had a holiday and I wanted her to be able to stay in that relaxed frame of mind for a little while, before my big exciting dramatic life came crashing through her door. So, I told her about my moratorium on the news, and she told me that when she heard I was in a sticky situation, medically speaking, the words than ran through her mind were, “You can’t take my Spike.”

Because that’s what we were, or it’s part of what we were. When I was struggling to stay alive, one of the considerations in the plus column was that it would have upset Catherine if I didn’t.

I find this part difficult to express. We don’t really live in a culture that values relationships with ex-lovers.  And the having been lovers part was significant and was the base of the thing, but it really was an old love and was way more involved than simply ‘ex-lovers’, in the standard sense. Catherine was, among other things, the person I knew would remember my birthday, would make sure we exchanged presents at Christmas and would call on Saint Patrick’s Day. People who have family might not understand how big those little things are, that being remembered stuff. Catherine did many, many things for me over the years and those details of remembering me through those times was stuff that made me feel loved, even when things in my life were hard.

In some ways, I have hesitated to write about Catherine’s death because I have been so overwhelmed by some many details and so many people. It’s probably not hyperbole to say that there were 600 people at Catherine’s service, There was a lot of crying. And some singing. And some laughing and story-telling. And a great deal of whiskey was consumed. A lot of emotion was emoted that night. Catherine knew a lot of people and helped a lot of people and lots of them showed up to thank her and talk about their relationships with her. And that was good.

And not to sound maudlin or self-pitying, but….

I heard what people said, and it sounded true and I certainly believed them, but it all sounded so different than how I related to her. One of the differences was, if you love someone for 25 years and were in a ‘relationship’ with them, odds are you may have had an argument or two over the years. I knew Catherine well enough to have gone to the mat with her once or twice, and it wasn’t to grab a quick kiss, and I knew the 360 degree, stereoscopic, surround sound Catherine, and how she could be angelic, or she could flay you with a sentence and leave you there wondering where your arterial blood had disappeared to. I say this about her because I could and can do the same. I knew her well enough to fight with her, because our relationship was worth fighting for and, because I thought that one of the points of our relationship was to be there for each other and to also tell the other one if she was full of shit, As sweetly as possible, but at the end of the day, one of the great values of knowing someone so well and so long is that you know when they are full of it, and you also know when they are starting to come unwrapped or maybe steering their little sanity bus too close to the cliff. We did all those things for each other over the years. During the time when my parents were dying, I had become really isolated, which made all the hard things harder. I was really really hurt and really really nuts, and Catherine made a point of reaching out to me in those dark times.

I don’t know what else to say. It’s already too much or not enough, but probably both.

It doesn’t make any sense to me. And when she died, I realized that somewhere along the line I had decided that Catherine would live longer than me. Now, I admit, I had about a year to lay in bed and think about things like that and at times it seemed the only person I might outlive would be the Queen Mum. I’m not sure if that’s where the idea took root, or whether it just logically seemed that if Catherine could survive her adolescence, she would probably live forever. In my mind, she was on a porch, with her long hair turned silver and white, and she was still helping people, listening, making people feel listened to, subtly nudging people in the right direction. Not to be maudlin and self involved, but I don’t know how to make sense of a world where I am here and she is not.

Now don’t go freaking out… it’s not a statement that has an undercurrent of dramatic action.

I just mean it doesn’t make sense.

And I have a curse, well several actually, but one of them is, if something doesn’t make sense to me, and it’s important to me, oh my, do I keep turning that thing around and around and around and thinking about it and trying to make sense of it.

It’s a curse. And I have it going on now.

And it’s not the garden variety, ‘why would the universe take Catherine and leave George W Bush or… name your favourite dickwad tyrant here.’

But it’s just so stupid. The world was a better place with Catherine in it, and she had lots of life left in her, so why isn’t she here?

You don’t have to answer that. And if you say everything happens for a reason or some other Shirley MacLaine crap, I’ll send you a virus in the return mail.

The world, if it wants to be good, is going to have to put more effort into that with Catherine gone.

That’s the corny thing that I would like. I’d like people to just try to be nicer, kinder, more forgiving, more inclusive as a way of honouring Catherine and as a way of trying to balance the void left with the loss of her. I’d like it, but I am not sure people can do that, including myself. No one knows better than me that we can say all sorts of lofty things about how we will behave in the future when we feel our little earthbound cages being rattled. I’d like to think we might all really try to be better about whatever our particular selfish defect of character might be. Stretch ourselves. It’s like some sort of psychic socialism. We all have to be better in the world to replace the good things the world lost when it lost Catherine.

If that’s too flakey for words, I am gonna blame the lateness of the hour and the fact that tomorrow marks the beginning of another string of check ups and pokes and blood draws and being jammed in a tube, etc, by my pals at the cancer agency. I really should be asleep by now. But I also really should have written this about 7 weeks ago. I’m sorry it is sans images. As soon as I get some, I will slap them in to this post.

And so, little munchkins, it’s late and we should all be asleep by now and I am going to go bunk down. And leave you with the immortal words of Catherine and Tim Curry.

“Don’t dream it. Be it.”

or put another way, in the immortal words of Spike Harris, “This is not a dress rehearsal.”

I’ll try to remember those things if you will.

Nov 062009

I am a terrible little blogger. And I really should know better, because, well, because I had this very serious illness and, I know from checking in on other people of this ilk, that the longer the period of silence, the higher the concern goes.

Sorry.
I’d tell you that I’ll do better but that would probably be a lie. But I will fire things off as they appear in my life or in my head. Buckle up.

Today, I was reading an article in the NY Times about who should and who shouldn’t get screened for breast cancer and whether it makes any difference at all.
And I was reading, and I felt my anxiety level creeping up, because, and you can go ahead and call me paranoid on this one, it seems like the media likes to stir the shit and are pretty happy to print any old story that will grab people’s attention. It seems to me that if the beginning and the end of your experience with cancer is reading stuff in the newspaper or watching snippets on CNN you will just end up feeling completely and perpetually spun around until you no longer know which way is up. And you will always be terrified of getting sick and what you should do, or shouldn’t do, or should have done, if the day comes when you get sick.
Making people terrified and confused, that is what is sick.

So I was reading the article and I felt that feeling of angst start to wash over me.
And then I remembered what it was like to be right down there on the firing line, and I know lots of people will do things differently than me, but when I parachuted into the land of the lab coats, I was pretty much willing to do whatever they told me. That made me remember that, back in the day, I didn’t care what the NY Times said about mammograms and I didn’t care about what anyone else said either, unless they happened to be my doctor, with my chart tucked securely under their arm.

I guess I am of several minds about the situation, because of course it’s good to provide people with information about any illness. It also makes me look like a hydra.
But sometimes, the way the media cranks up the hysteria around cancer,a disease which comes with a healthy dose of organic anxiety producing mechanisms, well, that fanning the flames of personal terror just seems sort of sadistic to me.
That’s what I think.
I think that in the face of presenting what should be helpful, possibly life saving information, the media just cranks people up till they can’t tell right from left.
It’s sort of shameful, I think.

And, I want to have a wee vent about cancer patients on television. Or, I should say, the way television depicts characters who are supposed to have cancer. There are a couple of ‘em in popular culture right now.
Here’s my beef.
The little head scarf is moving me to tears but the abundance of eye brows is throwing a monkey wrench into any credibility you may have hoped to muster, mister.
And…
losing one’s eyebrows is no small thing, whether from chemotherapy or to make your tv show seem credible.
I know that sometimes the suckers just don’t grow back.
I also know that the way people look when they, as a real life human being, do chemotherapy look is jarring, and disturbing.
I can say with no hesitation that I pretty much hated how I looked when I was bald like a baby and had a moon face from steroids. So maybe that look is too much for your average consumer of popular culture.
But I have to say, as a member of that exclusive club, it kind of irks me when the make up team don’t even bother to cover the eyebrows up with masking tape or duct tape or something.

And on other fronts, because I am the world’s worst blogger, I neglected to mention that sometime between now and my last post, I spent 3 weeks in Costa Rica, diving with white tipped reef sharks and turtles and so many amazing fishies and animals.
It was great.
Someone asked for pictures but since most of my time was spent underwater, the photos I have are few and not as spectacular as the images I brought home in my mind.

And because I believe in the power of the internet to say all things to all people, I want to take a second to say that, while I was originally sort of annoyed with Reef Runners in Puerto Limon, my final verdict is that I think they really sat up and paid attention when I said I was frustrated with how things went, or didn’t go, while I was there. The owner made a huge effort to make everything right when he found out I was unhappy.
And as soon as I remember my tripadvisor.com password, I will make that info known on that site as well.

And, shoe on the other foot, let me just take advantage of the internet to say that the So Posh clothing company in Florida ripped me off, which is a big drag. I have been shopping online for at least 10 years and I have never, ever had a problem before.
But these wankers took my money and then never sent my Ed Hardy shorts.
When I complained, they apologized and said my order had been mixed up with someone else’s and they were fixing it. Silly me, I thought they were telling the truth.
That was about 6 weeks ago, and let me just say, it’s no longer shorts season in the town where I live. I ordered one pair of shorts in July, and here it is November and all I have to show for my money is a stupid lying e-mail saying they were going to fix it.
They don’t answer their phone and no longer respond to my e-mails.
I suppose dogs like this just pull up stakes and start something new with a new name.
Paypal won’t help cuz too much time has passed.

But hey, don’t blow your cash on anything from So Posh clothing in Florida. Liars and cheats. Bad, bad So Posh.
I just wanted my shorts, but these guys are some dirty rotten scoundrels. So Posh, stealing wankers.
Don’t be pulling your credit card out to send any money to these wankers.

(How many times do I have to say So Posh, So Posh, So Posh, So Posh so the search engines pick it up and other people are spared the BS I have gone through? Does anyone know how many times I should mention that Samantha, yes, that is Samantha at So Posh, in Florida, lied to me and ripped me off, when it would have been very easy to put my Ed Hardy, did I mention they were Ed Hardy shorts? Samantha, from So Posh in Florida, could have been a non wanker and sent me my Ed Hardy shorts, but no, she ripped me off, so shame on So Posh and please don’t let them screw you over like they did me. Wanker cheating morons.)

Aside from being ripped off by lying American wankers not actually selling Ed Hardy shorts from Florida, things are good.

Though I remain gobsmacked when I look at all the ways American people are trying to wiggle away from some sort of moderately ethical health care system.
Listen to me, America.
The equation goes like this.
1) you are born (which in america, costs money)

2) you live, which will involve broken bones, skinned knees, bruises, cuts and stitches, broken hearts, (for which, I hear, they have no successful treatment except substance abuse or the rebound relationship or both) and who knows what else, which also all costs money

3) one day, one way or another, something completely craptastic will happen to you and will make you dead. This process will also cost money, which seems sort of unfair, because they should fix you if they are going to charge you.

Anyway, it just seems to me that unless you have yourself some health insurance, you might as well take an extra job on the night shift at the takeout window at the all night McDonald’s so you can just keep on top of the interest on your hospital bill. Or I guess you could lose your house to pay for your health care.
Everybody is gonna get sick, at some point, and everyone is gonna need some help from the people around them.
Why do you guys have such an anxiety attack when someone tries to make it just a tiny bit less catastrophic to be sick?

Seriously. You have me completely confused.

Adios. Till next time.

And hey, did I mention, don’t do business with those wankers at So Posh in Florida.

Jul 312009

Dear America,

It’s not my business, in a general sense, so my initial response is to let you do what you want with your healthcare system.
But it seems that lately, the forces of paranoia and manipulation have trotted out the Canadian healthcare system and they have done their best to fan the flames of a national anxiety attack and shit talk the system we use in my country.
You can be as dumb as you want, but when you shit talk me or mine, I will be forced to respond.

Let me just step right in and alienate a large group of people right off the bat.
I think healthcare for profit is immoral.
And someone who lives a life like mine doesn’t toss the word “immoral” around lightly.
I don’t think pornography is obscene but I do think that healthcare for profit is obscene.
But that’s your system and not mine and you get to do things however you want.
I would be an imperialist if I tried to make you accept systems of organization that work for me but might not work for you, and we won’t have that.
But I believe some rich stakeholders are telling you some fabulous lies, and I want to tell you a few things as someone who has spent a lifetime accessing government funded healthcare.

So, here’s a wee anecdote.

As you probably know, 5 years ago, I got sick in a fairly major sort of way. I’d be willing to say that, I suspect, most people around me didn’t expect me to make it.
That’s a subject for another day.
The subject for today is this.

I got sick.
My surgeon wanted to operate but there was about to be a strike by some folks in the healthcare system.
Those folks went on strike for a few weeks.
After a couple of weeks, they got ordered back to work by our not at all socialist government.
The strike was broken on a Monday. By the not at all socialist government.
On the Friday of that week, I had my surgery.

And, no one kicked me out of my bed. In fact, I was wiggling my way out the door and bugging the nurses to be allowed to go home.

I was discharged and within days I had an appointment at the local cancer agency, where they more or less took over my life. That was probably for the best.
But there was never, ever, a moment when I had to wait for attention on a healthcare level.

I know, you have been told that it’s the red hordes up here, doing terrible things to healthcare, but I have to tell you, I don’t see it that way.
Patients aren’t rotting on gurneys in the hallways of hospitals.

And I don’t mean to be ghoulish, but I had an internet ovca buddy who was diagnosed about 3 months before me, with the same cancer at the same stage.
I realize it is possibly apples and oranges, but she is dead and I am not.
She posted a lot about having to spend hours in emergency rooms to get care, spending a lot of time in a great deal of pain, and being left to wait because she was self employed and didn’t have some fancy HMO insurance package.
I pay about $75 a month for my access to healthcare, with very few restrictions and no one says who my doctor will be but me.

Today, I read two good articles that articulate the point better than I could.

One is from The Guardian

http://www.guardian.co.uk/commentisfree/cifamerica/2009/jul/31/healthcare-barack-obama-nhs-childbirth

and one from Slate.com

http://www.slate.com/id/2223911/

and as someone, somewhere, wrote today, I would rather live in a system where I might have to wait a month or two for a test than live in a system where I can’t ever have the test because I don’t have enough money.

Don’t gobble up the crap.

You deserve better. No one should be sick and know there is a treatment, but it’s not available because they aren’t rich.

May 092009

I realize that in cancer circles, most people don’t make the day of their diagnosis some sort of landmark, but hell… I’ll do it.

It was 5 years ago this weekend that my then girlfriend followed my gurney into my hospital room, fed me ice chips, and told me that the surgeon told her I had cancer.
In retrospect, it seems a bit sketchy that he left that rather ominous job to her, but it didn’t seem weird at the time. And also, my surgery was on a Friday afternoon, it was supposed to take 45 minutes, but ended up taking about 3 hours. I imagine he had some babe on his sailboat, waiting for him to show up and forget about his work week.
And I also think the surgeon is a big part of the reason that I am still alive.
Apparently, a surgeon trained in gyno oncology will increase one’s chances of survival by up to 50%, so I forgive him any procedural breaches.
He wasn’t much for talking, but I am still alive, and I’ll take that over him being a good radio host.

And, we may be broken up now, but in the moment when Elaine was left with the job of telling me I had cancer, it was sort of a big demonstration of how she and I often process enormous and difficult things the same way.

It went like this (as far as I recall).

The porter wheeled me into my room.
Elaine caught up with me/us at some point in the hall.
I looked at her, really in more pain that I can ever recall having been in, and said, “I’m thirsty.”
She brought me ice chips, cuz that was all I was allowed to have.
Then, after some amount of chit chat that I no longer remember, she told me the surgeon had told her I had cancer.
She handed me a strange anatomical drawing that, vaguely, showed where the cancer was and what chunks he had cut out.

I was reading an article last week that said Alzheimer’s was the second most dreaded disease, next to cancer, (which is funny cuz I have dealt with both pretty up close and personal.)
But when my then girlfriend had to tell me I had cancer, I don’t recall either of us sobbing or freaking out (which is not to say that we each didn’t have our moments at various points along the way but not in that moment).
But, what I recall was that we were both oddly and wildly practical. Both of us taking the position of, “okay, what do we do next?”

And I spent the weekend in the hospital. And people came, and some of them knew when they got there and some of them had to be told. And I can’t speak for my ex-girlfriend, but I sort of felt like we needed to cushion the blow for the people who came by. We had to look after them a bit.
Obviously some people were more freaked out than others and some people are better at containing that than others, and having a morphine drip really does make a cancer diagnosis just a tad less freaky.

Anyway, it’s weird to think back on all that.

Technically, I shouldn’t say anything about a 5 year anniversary till I hit 5 years from the end of treatment. That would be November 12/2009. for those of you keeping track at home.
And, it’s confusing because I am part of a clinical trial, so they will keep an eye on me for 7 years, rather than 5. So… when do I get to kick up my heels? 5 years or 7? Maybe I get both.

And, there is always the stupid BRCA 1 gene mutation hanging over my head.
I spoke to my GP a couple of days ago and she said that because I have a direct blood relative now dealing with breast cancer, my chances of getting it go up from an 80% likelihood to… who can say?
I mean really, once you hit an 80% probability factor, does it matter if it nudges up, since it really can’t nudge up very much before Dr. Kevorkian drops by and does his thing as a community service.

Anyway, this is the first of a few 5 year anniversaries.

I realize that, when I was sick, I just put my head down and pushed through it and hoped for the best. And now, there are some loose, freaky ends that need to be looked at and tied up.
Hitting the 5 year mark probably helps me with that introspective process. I think I have a bit to figure out, since, statistically speaking, I should probably be dead now, not hammering away on a keyboard on a beautiful May evening.

And, after 5 years in the trenches with this stupid disease, I want to take a moment to think about the various women I have known, mostly through e-mail, who didn’t do as well as I did. And I am sad it had to be so stupid and difficult for them, cuz it was difficult enough for me. I am so, so sorry it was harder for them, and often, with such shitty outcomes.

RIP, OVCA chicas.
You all helped me more than you will ever know.

Mar 222009

I read recently that the month of March has the greatest increase in daylight hours from the beginning till the end of the month.
Way to go, March!
Not generally one of my favourite months but it scored full points for that newsflash.

I like having more light. I like coming home from work in daylight.
The winter had an eternal feel to it, like I could no longer imagine it was going to stop being winter. And then I had the strange realization that some people like winter. I’m not sure how many of them live in my town, though.

So life is gradually, in little nano-sized baby steps, getting better.
And life is probably always going to have a lot of 2 steps forward, one step back.
But work has been really great. I don’t expect that condition to stay that way forever, otherwise they might stop paying me cuz it’s no big hardship, but right now it’s really good.
Of course, I now have a couple of co-workers who are making me nuts, but I can deal with that. Or them.

Just finished up my quarterly cancer scrutiny whirlwind tour of labs and clinics and doctors’ offices all around town.
That stuff always sort of rattles my cage, but I guess that’s to be expected.
My bloodwork came back higher than I would like. It’s still within the acceptable range, but close enough to the high end of that range that it could reach out and shake hands.
It’s the highest it’s been since I finished chemo.
The doctor is in a “let’s see how it takes shape next time” frame of mind.
I’m not completely sure how to explain how it is for me.
Probably it’s nothing but the cheeseburger I had before my bloodwork, but it is alarming.
When my CA 125 has been down around 6, and anything under 25 is okay, to have it shoot to 20 gives one pause.
And… all I can do is wait and see.
And it’s probably a good reminder for me to not get too cavalier about all this.

And, same day, same office, same on-call-ogist…. we start talking about my rock ‘em sock’em genetic inclination towards breast cancer.
I believe the number is 80% chance of getting it.
Oddly enough I had been listening to a podcast the day before saying, without the mutation, a woman has a 1 in 20 chance of getting breast cancer.
So my ever cheerful oncologist says, with no prompting from me, “If you want to lower your risk level to that of a normal woman, you need to have the double mastectomy.”
She wasn’t trying to sell me anything, it was more like she could see inside my often transparent brain.
So, I sez to her..”whoa, wait. I could have the surgery and then, *still* have a 1 in 20 chance of getting breast cancer? That’s pretty fucked up. How pissed off would I be if I had that surgery and then. still. got. breast. cancer.
Apologies for profanity but whoa.
Don’t go to Vegas if you have that sort of luck.
And then I was catching my GP up on all the news. And she was asking if I want the surgery.
And, right now, I just don’t.
I might do it one day, but right now I am not ready.

So, it’s weird. It’s always weird when I have to parachute back into cancer land. Cuz on a day to day level, you try to get on with regular life again, even though it’s always there in your head.
Cancerbaby said we are like pictures with watermarks on them. At first glance we look regular, but in the right light, held at the right angle, it shows up.

Anyway, in spite of how this might sound, things are getting better. Slowly.
I’ve got some scuba diving plans, once work settles down a bit.
I have some other things up my sleeve.
I like the light.
And it even seems like I have got a few lucky breaks lately, and I’d like to keep that ball rolling.

Happy equinox-y stuff, peoples.

Enjoy the light.

And hey, there is a symbol for biohazard, but is there a symbol for mutant or mutation? do I have to rely on the X-Men for tattoo material?

Feb 042009

A few folks have nudged me that it’s probably time to post something here in blogland.

Things have been stable-ish and good-ish.
Pretty much digging the new job, and it’s a treat to be able to go to work and like what I do and what I get to do and be challenged and have it be exciting. I like that. And, on top of that, they give me money, so it’s all pretty good.

The unpleasant thing is that I have pneumonia. It’s the first time I have had to take antibiotics since doing chemo. I am one of those people who dodges antibiotics as much as possible, but after a month of not sleeping more than an hour at a time and waking up gasping for breath, I broke down and saw my GP. Well, it took a month because for the first 3 weeks, the symptoms only showed up at night when I would try to sleep. So, daytime would come and I would go about my day and forget that I couldn’t breathe the night before, and then I’d go to bed and it would start all over again.
Once I started getting symptoms in the daytime, I was quite quick to get it together to see my doctor.
So, antibiotics for 10 days.
It’s okay. I’ll do a lot to sleep through a night.

And today, I emptied out some of my parents’ stuff from a friend’s shed. I sort of dumped it there in a panic last year when I had to deal with it. A bunch of it ended up with mold and water damage, because I didn’t really think about the big picture at the time.
Most of the stuff from last year got thrown out, cuz I just didn’t have enough space to store it.
Today I emptied out the last of the last of it, I hope.
So, I will spend the weekend going through the stuff I have stowed in my truck and the stuff I have stowed in my tiny storage locker downstairs and I will find a way to make it all fit. Which means a bunch of it will end up in the dumpster.
At this point, and at several other points, that was pretty much the only viable solution to having all this nostalgic stuff that I can’t fit in my place so I have to deep six it.
It’s funny cuz I was out driving earlier tonight and it struck me that I am at a point in my life where I should be enjoying the things I have worked for and collected and I shouldn’t be living like a 21 year old. I also shouldn’t be jettisoning stuff that matters, but part of suffering from arrested development is you don’t do things in the expected timeframe.

So, it will be a weird weekend. It always messes with my head when I have to throw out stuff that was my parents’. It’s not like there is gonna be any new stuff from them so I feel like I am throwing away little pieces of them and being a full on ignorant jerk.
But circumstances just keep coming up that that’s the solution. So, it kills me, but I have to do it.

It’s weird though. The whole process of dealing with my parents’ stuff has made me a bit touched in the head about taking on stuff for myself. I am a bit nutty about it, I know, but it just keeps coming up that almost everything gets tossed in the dump eventually, either by me or by whoever has to clean up after me. So, I am now pretty freaking about taking on any new stuff.
So it goes.

Anyway, I am going to go soothe my ragged nerves by watching some BBC programming.
In short, life has been getting better. I just need to make it through the weekend.

Nov 032008

I guess if you only update your blog once a month, you should have something to say.

Briefly, it’s like this…

this weekend is the anniversary of my mom’s death. Since my dad died so quickly after her, it is hard to separate out one set of grief from the other. Oddly, I have been thinking a lot about the town where they lived. I never lived there and really didn’t like that town one bit. But I have been having lots of little flashbacks to places there. It feels related to autumn, for some inexplicable reason.
Anyway… my mom died during Day of the Dead.
Given that we all, apparently, gotta die, I think that’s a pretty good time to leave the planet.

In other news, after nine years of slogging it out in the trenches, it appears I am moving into a new job. Same organization, different position.
It’s been a long time coming. I don’t know if anyone else would have hung around for 9 years waiting for the long promised job to materialize, but I did, and it did, and it just goes to prove that I am loyal and determined rather than stubborn and unreasonable.
Well, I am likely a tasteful blend of all those qualities.

And the last tidbit is I am now a certified Open Water Scuba Diver. And while the course may be relatively straightforward for some, I had to work at it. And I had an underwater mishap that shook me up, and I had to go back and get back on the seahorse and do it again. I’m not sure if you have ever been unable to breathe while 30 feet underwater in the chilly old ocean, but it does activate something primal. I’d call that something – terror.
But I went back and did it again, and I was scared but I did it anyway.
And then I did it one more time because I wanted it solid.
It took up a lot of my mental energy, just getting ready to do this, well, actually overcoming the fear, talking to myself about how it is clearly possible to do this and I just had one thing that went sideways and it was all gonna be okay.

So, I conquered that seadragon on the anniversary of my mom’s death. I didn’t set it up that way; it’s just the way the cookie crumbled. But it was good.
And having succeeded at the skill, I realized that it is complicated to express elation underwater. But that’s okay. I think everyone knew.

Life has been such a shitstorm over the last few years, I am cautious about saying I think it’s getting better, but I am now willing to consider whispering that it may just be beginning to show signs of turning the corner and around that corner, there is a more generous light supply that what I have had for the last few years.

Oct 182008

It’s been awhile. And at least a couple of weeks ago I was asked to get with the blog posting. My apologies for the delay.
It’s a strange mix, this blogging, of having an overview of one’s life, an ability to discuss it all and a way to balance one’s privacy.
When weeks pass and there are no posts here, just believe it is my need for privacy rearing its head.

So, here’s the skinny.
The last 4 years have been a bit of a hellride for me.
It’s hard to talk about that without sounding like I am feeling sorry for myself. And I am not.
I realize most people in the world have a harder time than I do on a day to day level. And that sucks.
For about 3.5 of the last 4 years, I felt guilty about feeling angry for having been handed the white North American version of a shit sandwich.
Now, I am more comfortable, and less easily swayed from my anger. Cuz, really, some stuff just happens, and so it goes. And some stuff is about stuff we can do better, and I hope people learn to do better because they didn’t do so good by me. Maybe I didn’t do good by them. If so, I wish they would have taken the time to tell me.
And the weird thing is, in allowing myself to be angry without apology, I feel more able to just move forward in the world. I feel less angry.
Like, I no longer give a rat’s ass whether you think I am being self-indulgent, unless you have gone through something similar.

When I was about to leave Costa Rica, I had this epiphany, because I realized I had no big desire to go home, for the first time ever, and if I could just Fed-Ex my cats to Manuel Antonio, I would have.
But since I came home, I decided to give it one last college try. So I am doing stuff.
I let go of the belief that the folks and activities that used to pull me through are still there, because they haven’t, for the most part, been there for years. And it was time to stop kidding myself that they would show up soon.
So I am doing what I want and seeing where that takes me.
So far it has taken me to 30 feet below sea level, where it is cold and dangerous but, oh so very cool.
I’ve been diving, where it’s cold and, really, a completely different world. I love it.

So, today, I look at the scorched earth of my past and I see the spots where some things survive and I see the spots where that which is no longer beneficial makes way for something that might be.
I’m letting go of the past life that I had. I’m ready to go somewhere new and have a new life.
That was hard for awhile, the letting go, but now it’s exciting.

Sep 052008

Today, I got a goodly handful of Ativan and then got jammed down the tube in the MRI department at the local cancer agency. I’ve said it before that, aside from another round of chemo, I would be willing to do most anything else they can dish out in that building if I could skip being jammed in the tube for an hour or so.
Today wasn’t the worst, but it wasn’t the best either.
After securing my arms at my sides and putting that crazy (‘just try to stay calm’) cage over my head, one of the attendants had a shot of spittle fly out of her mouth and land on my face.
And I couldn’t wipe it off. I was all tied up.
It was vulgar.
The people at my cancer agency are brilliant, except for the people in this department, who are more like poorly trained apes grabbing you and twisting you around and seemingly completely oblivious to why someone might hate being jammed in a noisy freaking tube where the lid is a quarter inch above the tip of your nose.
Perhaps I offended them when they asked, “Have you been here before?” and I said, “Unfortunately, yes.”
And so the pushed me in the tube and I was doing my ativan inspired mantra “keep it together, keep it together, keep it together” when I foolishly opened my eyes and saw the top of the tub less than an inch from my face and thought to myself, “Opening the eyes = not a good idea.”manuel-antonio-beach.JPG
So, then I just imagined I was here again, in spite of the ear puncturing noise all around me.

I hate MRI’s, but at least I only have to do them once a year.

Tomorrow, I will be doing a blogging workshop with the amazing Mary Bryson. I’d say y’all should come but I heard a rumour that it was all full up.

Sunday is thewwoh_logo.gif Winners Walk of Hope.

And next week, is big time appointments with all my oncologists at the old cancer agency.

And beyond that, I am taking the preliminary steps to investigate if I can go back to Costa Rica for a, possibly, permanent stay.
Who knows.
I try to not read too much into anything.
But I have known for a long time that the only thing left standing in my life that was there 4 years ago is my job.
When it came time to come home, I realized that I don’t have much here to come home to and that, in Costa Rica, I had more fun than I had had in years.
So, something needs to be different. The way things go in my town or the place I call my town.
Obviously these things take a long time to put into place, but it is interesting how much relief I feel when I think there is nothing in this town to keep me here. None of the old things work or exist anymore, so I am free to go create something that does work and that does make me happy.

Stay tuned.

Aug 302008

wwoh_logo.gif

I don’t mean to throw off the natural rhythm of life by posting two days in a row. No doubt some people will find this unsettling, to say the least. But I am posting today because the Winners Walk of Hope will be happening in a couple of weeks and I am letting people know I will be walking and if anyone would like to sponsor me, you could do that by clicking here and you will automagically be taken to the page where you can sponsor me.

Muchos gracias.

Aug 292008

As I mentioned, I just spent most of August in Costa Rica. It was pretty fabulous. And I took a few pictures while I was there. Unlike the folks I was traveling with, I didn’t spend a lot of time taking pictures of my lunch; instead I was trying to soak up as much of the experience of being there as I could.

That said, I did take a few (around 300) pictures and had the good taste to cull the blurry and the stupid and the ‘what the hell is that?’.
If you’d like to see what cut the mustard and have a wee glimpse at some of the stuff I did and some of the places I went, you can check out the new stuff in the gallery. You can find that here.

Sadly but for obvious reasons, there are no photos of the white water rafting, which was incredibly fun. But cameras and rapids, not a good mix.

Aug 232008

I know, I know. You’d think I would be yakking about my recent vacation. And that was the plan, until I saw this headline on the BBC News website and got all opinionated about it all.
Cuz, according to at least one of these researchers, I guess I have a 180% chance of getting breast cancer, so it’s lucky I don’t go in for these sorts of statistics.

Here’s the meat and potatoes of the thing.

Positive thinkers ‘avoid cancer’

Women who have a positive outlook may decrease their chances of developing breast cancer, say Israeli researchers.

The small study, published in the BioMed Central journal, also found that getting divorced, or being bereaved could increase the risk.

But the researchers admitted that women were questioned after their diagnosis, which might significantly change their outlook on life.

UK experts said it was hard to compare different women’s emotional stresses.

The role of mental outlook on cancer remains controversial, with some studies suggesting that it might play a role.

Meanwhile, others have found no significant effect, either on the likelihood of developing the illness in the first place, or on your chances of surviving it.

The latest study looked at 255 women with breast cancer and compared their answers in a questionnaire on mental outlook and life events with 367 healthy control subjects.

They found that a generally positive outlook appeared to reduce the chance of breast cancer by a quarter.

In addition, exposure to one or more of the traumatic “life events” such as loss of a parent or a spouse increased the risk by more than 60%.

Lead researcher Dr Ronit Peled, from Ben-Gurion University, said that women who had been exposed to a number of negative events should be considered an “at-risk” group for breast cancer.

“We can carefully say that experiencing more than one severe and/or moderate life event is a risk factor for breast cancer among young women.

“On the other hand, a general feeling of happiness and optimism can play a protective role.”

But Dr Sarah Cant, from Breakthrough Breast Cancer, maintained that there was no clear evidence that positive or negative experiences could affect breast cancer risk.

“Emotional stress is highly subjective and is difficult to measure accurately.

“Women in this study were interviewed after breast cancer was diagnosed when they may be more likely to recall feeling depression and anxiety.

“The researchers also didn’t account for other factors known to affect breast cancer risk such as family history or weight.

“Breast cancer is a complex disease and there is unlikely to be one single cause.”

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