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.
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.
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.
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
and one from Slate.com
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.
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.
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?
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.