Things have been going pretty well lately.
I had good test results, and really, there are few things I would place above that in terms of my overall happiness and long-term longevity-ness.
So that was good.
Going back to work has been good.
I picked a great project to be working on, and it is having a slow start which works nicely for me. And being surrounded by nurses helps on some level too.
I have been going to the gym and getting back in shape and burning off the many watery pounds that the steroids gave me.
And I bought a new mountain bike last week.
It was a really good score. It was exactly the bike I wanted and the guy I bought it from really took care of it and he sold it for a little less than he hoped for, and I spent a little more than I had hoped, and somehow it felt really fair the whole way around.
And I have an interview tomorrow night for library school, and that’s exciting,
Though it is too far off in the probability department for me to start getting my hopes up.
All in all, things have been going really well lately.
That is, they were going pretty well until Sunday, when a city bus ran a red light and created the solid, unforgiving mass that my truck and I would crash into while on my lunch break.
I remember how the moment came when I realized that the bus wasn’t going to stop and that I couldn’t stop in time and that I knew I was going to crash and how I just thought, “Man, I can’t believe this is happening to me.”
And then the next thing I thought was “Owww!!”
I am more or less okay.
I have a bunch of bruises coming up and some back and neck pain and a burn on my neck where my seatbelt grabbed me.
And I suspect that they will write my truck off, because I watched it turn into an accordian in front of me.
Thankfully the morphing routine stopped before it included my legs.
Though I did give my knee a good solid slam into the dashboard.
As I explained to a friend tonight, most of all, I miss my truck, but that may have a lot to do with the fact that I don’t find myself having to miss my legs or my arms or my mobility.
I am completely unenthusiastic about having to deal with a big legal bureaucracy.
That pretty much bites.
I have witnesses, and I know it wasn’t my fault, but these agencies are notorious for screwing everyone involved.
I’d like to believe that they will get it right.
I’ll let you know, but in the meantime, I am not getting my hopes up.
All that happened on Sunday.
I was pretty upset about it at the time.
And I am not happy about it, by any stetch of the imagination.
But I now realize that I am lucky to have basically walked away from the whole thing.
I do wish that bottle of organic flax seed oil hadn’t rolled under the seat to slowly go rancid as the truck waits in the adjuster’s lot.
But hell, a fresh bottle of oil probably isn’t a high price to pay, all things considered.
Spike and I went to the cancer agency a few days ago to get her quarterly blood test results. The doctor cheerfully said to Spike that she was (and I quote) disgustingly healthy. Yes! Woo hoo! We love hearing superlatives attached to the word “healthy”.
Here’s the thing I wanna share, though…
Funny thing. The chemotherapy side-effects look like the disease itself. So when a cancer patient finishes the chemo that’s 3/4 killing them in hopes of all-the-way killing the cancer cells, and they start looking more like a regular human again, and being able to walk around the block without pausing to rest six times… well, it just seems like they’re better. Folks congratulate them on beating cancer.
Except… cancer is the monster that waits around the corner. Surgery carves out all the cancer that can be seen and reached. Chemo tries to kill any remaining cells. Then the patient is discharged, and… and… waits seven goddamn years for a clean bill of health — waits to find out if the radical surgery and the shocking illness caused by chemo did the job. The intervening time is spent (1) enjoying the heck out of life and (2) if one values ones sanity, not thinking too much about the monster that may be laying in wait.
Here’s more info on recurrence: Dancing with NED
I restrain myself from peering fearfully around corners. But still…
Here’s the problem:
Both Spike and I do well in adverse situations if there’s something to be done about them.
“In order to survive this, I gotta move this mountain from this place to that place? Okay, lemme get my shovel.”
So the whole freakish last year has been a lot of work (each of us with different things to do), and lot of enduring the shitty stuff, and a lot of planning and changing our diet to eliminate chemicals and hormones and additives and such… and even cleaning the doorknobs when Spike’s immune system was down, and, well, there was always so much to do. And with a great deal of help from our friends, we did it.
And here we are, on the other side of the treatment, with nuthin’ to complain about… and now I’m more frightened than I have words to express.
I wouldn’t want to experience my life without Spike in it. She’s wise and warm and brave and funny and she matches me like no other. Her kindness inspires me. Her insight makes me think. I love her because of who she is in the world, and you should too. I will marry her, and in doing so will become the luckiest person alive.
On a visceral level, if I imagine a time when I can’t roll over in the morning and see her smiling at me from the next pillow over, I feel like curling up in a ball and crying. If I imagine a time when I can’t turn excitedly to her and share some new knowledge, or talk over a trouble… the pang of loss — just from imagination — feels like a stab wound. And when I consider the possibility of a recurrence of her cancer taking her from me… I experience terrible feelings of fear and helplessness.
Because, you see, we can’t just plunge in and apply hard work to make the best outcome. We did that part, and we continue to do healthy lifestyle kinda stuff, and besides that we don’t really have any control left, besides avoid-high-tension-power-lines and don’t-get-a-coal-burning-chimney. Our future together is dictated by a toss of the cellular dice, tossed by a universe indifferent to personal loss. And every three months, we go see a doctor, who matter-of-factly reports on the results of the toss.
So for those of you who wonder why I spend a week out of every three months walking around with my teeth chattering — now you know. But I guess it’s the only game in town.
you may have figured that it was just about time for my 3 month check up and all that jazz.
I know that Elaine has something that she plans on posting about the whole thing, so I have been leaving this space blank, but now I seem to be on a posting roll, so too bad for her.
Last week my clinical trials nurse called me and asked me if she could switch my appointment time because she had some other something happening and she wanted to be there for my appointment and could we move it to the 18th.
I was so cool on the phone. “Oh, yeah, sure, no trouble. But when should I do the bloodwork?”
“Oh, tomorrow or the next day,” says she.
“Oh, sure, great”, says I.
And then I got off the phone and had a total meltdown.
Ahhh, I’m not ready, not ready!!
See, I have concocted a series of rituals that lead up to the bloodwork episodes.
This is a newfound luxury in the post-chemo days. But still, I amp up my vitamins and supplements and green tea intake.
I drink miso soup and I cut out dairy fat.
All this because my oncologist told me that the CA 125 count can be tweaked a few points because of what you had for lunch.
Now, I think he said that to me to reassure me that some low level fluctuation was okay and basically indicative of nothing.
But me, I decided that it was important so I came up with this series of pre-blood draw rituals.
And when I got the phone call, I hadn’t started my routine.
I simply wasn’t ready.
For 18 hours, I was a basket case.
My girlfriend really has the patience of a saint.
The 18th came and… I had an appointment with one of the counsellors at the BCCA.
I decided I probably needed to talk to someone about my ongoing near-death experience and that talking to a counsellor didn’t necessarily make me a sissy when my ex-girlfriend expressed no small degree of horror that I had not, till that point, availed myself of the service the BCCA provides free gratitis for those of us pudgy bald peeps and those of us with second growth hair.
It hadn’t been my intent to go to the cancer agency twice in the same day, but that’s how it all worked out with the appointment swap.
And there I am, on the elevator, going to my appointment, when two middle aged people get on, struggling to figure out what floor they need to go to.
They turn to me and ask, “What floor is the lab on?”
And I said, “For bloodwork?”
And they looked sad and said yes.
“The second floor” I said.
By the time it was out of my mouth, and I had realized how lost and sad and new to all this they were, they were off the elevator.
“Good luck!” I felt like shouting after the doors closed.
Off I went to my appointment with my incredible shrinking woman.
We had an interesting talk about ovarian cancer.
She said, when it comes to recurrence, it’s different than other cancers.
She said that with other cancers, they go in and they get it or they don’t quite and it’s pretty clear cut whether you are all better or not.
She said that those of us with ovarian cancer, or who have had ovarian cancer, have to get used to living with the greys.
Cuz with us, it isn’t so black and white.
I don’t yet know what I think about that.
I am still tossing it around in my mind.
Every time I am at the BCCA, I think about Marlon Brando saying you have to make horror your friend.
All the people who are there are somehow co-existing with horror in their lives.
And almost all of them are really pretty great people.
It’s an amazing place and one that I don’t want to spend too much time at.
And then I came home. Or at least I started to come home.
As I left the parkade at the cancer agency, some man got all aggro on me because my truck inched a tad across the line into his lane as I turned on to the street.
It happened because someone had parked illegally and their ass-end was in the way and it made the turn kind of acute and I nudged into his lane just a hair.
There was no accident and there was no damage either way. No screeching of brakes, no crashing of steel. But he was all agitated and he wanted to make sure I knew he was agitated.
And then I stuck my tongue out at him.
I kind of shocked myself, I confess.
I was overwhelmed by what a complete wanker I thought he was, going all aggro on people coming out of the cancer agency.
He probably kicks puppies too.
So, then I screwed around, went to the gym, tried to stay calm… la la la..
and then I went back across town to see my man in a lab coat.
And, after all that appointment shuffling, my clinical trials nurse wasn’t there and it was a substitute.
She was nice enough, I guess, but I confess that I have established a relationship with my clinical trials nurse and my oncologist and I am always a bit thrown when I get new people.
Also, I think some of the staff there find me and the missus a bit off the wall and it takes them a while to get used to us.
I don’t know why.
Anyway, we were blah-blah-blah’ing with the new (temporary) nurse and we got to the part where we talk about how my recovery is coming, my return to life as I knew it.
And then she gets all Oprah Winfrey and says, “Of course, I know your life will never be the same as it was before all this…”
Like she is so informed and sensitive.
I was horrified.
I said I had every intention of having that life back again and that was the standard by which I judge my recovery.
“Oh yes, well, of course… that works for some people…” she back pedalled.
Also, this nurse had this habit of just bursting in the room without knocking.
Finally, Elaine stood there and kept her boot up against the door so that no one would just barge in while I was changing and stashing my Joe Boxer’s in my 501’s. (Nod to Cancerbaby)
Someone did actually try to come in without knocking while she had her boot against the door.
I think that counts as three or four barging in episodes in one appointment.
Anyway, finally my boyfriend in a lab coat came in.
He did what he always does in these appointments. He chatted with us about life and my
We talked about Kaua’i and told him he should go and take the wife.
He poked and prodded.
We acted like there was nothing in particular we wanted to hear, that our lives weren’t hanging in the balance, depending on what he might say.
Finally he said, “you are disgustingly healthy. The CA 125 is at 4 or less.”
I think that now, this many days later, Elaine and I are starting to actually get normal-ish again.
A friend passed me on the street later that night and I said I had seen my oncologist that day.
Since I was so visibly scrambled, she thought the news had been bad.
No, not bad… it’s just hard to rebound from the build-up. That’s all.
We are both enormously happy.
And it was a really hard build-up.
Maybe at some point you start to feel like you have lots of good history built up and maybe you feel like you are out of the woods. I don’t know.
It’s a feeling I’d like to have one day, if it’s available.
Anyway, that’s the news from my corner of the world.
And it’s good news.
And we are happy about that.
What’s new with you?
and waited patiently, I have now updated the gallery page to include a section of for pictures from our trip to Kaua’i last month.
You can hop over to that page by clicking this link
A couple of months ago, I mentioned to a friend that this blog started out as a way to keep my friends and co-workers up to speed with what was going on with me and Elaine and my treatment.
It was an off-shoot of the original blog that still exists in an abandoned, older sibling sort of way on this very site.
Since that time, things have shifted some.
Somewhere along the line in my treatment, I decided I wanted to document what was happening with me because when I went online right after my diagnosis, all I got was a shit load of dire information and it got me more and more freaked out.
I wanted to talk about how it was as I was doing it so that other ovarian cancer patients might be able to read this blog and have some sense of how it works (at least, how it worked in my case.)
Standing at the starting line of the ovarian cancer race is daunting.
I am not going to tell you it has been a picnic going through all this, but I sure don’t miss the early days of horror and confusion and all around overwhelming panic.
Once I was actually in it, I thought I should be yelling back over my shoulder for anyone who was looking on, wondering how it went.
And I also wanted to say thanks along the way to all the people who helped me, from my girlfriend to my G.P., to my former co-workers, to my current co-workers, to my oncologist, to my surgeon, to the crazy folks in Alberta who I have never met but who helped us out so much, to my future in-laws, to my good friends, to my cats, to the folks at my gym, to the people who helped us take the vacations, to the clinical trials nurse, to the friends who paid for my plane ticket, to the friends who stayed in touch and let me know they were there for me, to the people who helped us eat organically, to the guy who worked on my truck while I was sick, to the drag kings who performed at Lick, to VWL and other people who arranged fund-raisers, to my ex-gf who took care of the details while I was sick, to the cancer survivors who helped me keep the faith along the way…
Damn… the list goes on and on and on, and the danger with starting it is that I am doomed to have it be incomplete.
This list actually isn’t intended to be a comprehensive thank you list.
My point is, I was trying use the blog to say thanks to those people, you people, along the way.
And then it also, recently, began a small networking opportunity for me.
For me, a little online support community has sprung up between hooking up with Louise and Cancerbaby and Limbodacious and reading what J’s daughter has to say about her mom’s ovarian cancer.
It’s not a disease I would wish on anyone.
And if I could guarantee that none of us would ever have to deal with ovarian cancer or any of its offshoot annoyances, I would jump right on that.
But I certainly do appreciate the sense of community.
The ability to talk about how it is right now, and how it might be in the future, with some pretty razor sharp women has been a real relief for me.
See, ovarian cancer tends to hit women who are about 20 years older than me.
And, you may not understand this, but someone like me, talking about my ailing girl parts, doesn’t make a good fit in those OVCA chat rooms.
Tends to frighten the locals.
I really appreciate that these women are out here blogging.
But that isn’t really what I came here to talk about
I came here to talk about blogging in a larger sense.
I read this article about “blogging from your sickbed” (ghastly title, by the way) and thought people ought to read it
(though you may have to sign up for a subscription if you are reading this any time time after it is still steaming in its freshness from being posted.)
I think this blogging we are doing is actually really interesting and ultimately really important.
Maybe it’s the dormant anthropologist in me, but I think these stories are going to go a long way towards changing how other people experience similar situations.
That’s what I think.
The link above leads to a paysite, so here’s a second link to a temporary mirror of the text of that article… Blogging from the Sickbed
It seems they have developed a new test that catches ovarian cancer about 95% of the time.
You can read about it here.
And that’s good news.
Apparently that 95% success rate isn’t good enough for them to make it a standard test, but still, you’d hope they would use it in situations that called for it.
You know, it’s great to be back at work and to be getting a routine and connecting up with people, and even having a little bit more cash.
But it was really great to be in Kaua’i.
I knew it was great when I was there, and some of the ways it was great are becoming more clear to me now that I am home.
This picture was taken a few minutes after we got caught in a tropical rain deluge.
We had been warned about the storm and we were in the process of breaking camp because we were on our way to a new campsite, (oddly, we were on our way to the wettest place on earth). We thought we had it timed right and we would get everything packed up before the storm.
Our calculations were off by about 10 minutes.
That was a win for the storm.
It was actually a really wonderful rainstorm, though many things got wet and stayed wet until they hit the dryer once we got them back home.
Still, it was awfully fun.
That’s just what I was thinking about.
Kaua’i was lovely.
Well, well, well…
It’s a funny thing.
This weekend is the one year anniversary of my diagnosis.
I went into VGH on a Friday afternoon for what they said would be a 45 minute operation and about 3 and a half hours later, the surgeon came out and told Elaine that I had cancer.
I think it’s ironic and kind of cruel that she knew before I did.
I think it’s really cruel that it got left to her to be the one to tell me, but I think that really came down to circumstances rather than malice or negligence.
I remember hearing that I had cancer and thinking, “oh, okay then… what are we going to do about that.” I tried to keep that attitude the whole way along. I think I have been fairly successful with that.
I thought it would be a big emotional event for me to hit the one year mark, but it really wasn’t.
We had a really busy and really social weekend and that felt like a good thing. I was glad we were paying attention to regular life and getting back to being regular people.
It is weird to look back on all the things that have happened in the last year.
All the appointments, all the things I didn’t know a year ago that I know now, all the help I have received along the way, all the aches and pains, all the time to think about things, all the boredom, all the baldness, all the worries about health and money and the future and health and money and everything.
It’s weird because I am in a spot now where I find myself having to think about just how much I am going to let cancer be part of my identity in the future.
I’m back at work, though only for a few hours each day.
I have my hair back.
I am slowly getting my strength back.
I look pretty much like I did a year ago. I have rebounded, on the outside, from the ravages of the chemo.
But it’s a rather profound thing to go through and I need to figure out how to incorporate that experience into my life, and carry on.
I also need to incorporate the whole “who knows what the future holds…” thing in there as well.
It’s weird trying to balance the having been through all that and (seemingly) having come out the other side versus the fact that my health will be under surveillance for the next 7 years and I will be on of the lucky ones if I dodge some sort of recurrence along the way.
And meanwhile, I just want to get back to normal.
You see? It’s all pretty weird and complicated.
Actually, I am willing to postpone going back to normal if I can go back to Kaua’i.
How about that?
I was chatting today with a woman that I like and respect a whole lot.
We haven’t really seen each other since this whole thing happened.
She did the “Oh, you are so brave. I don’t know how you did it.”
Now, let me just say, I am more than happy to be told how brave I am most of the time. I am even willing to have people tell me fibs if it involves some detailed description of my extreme bravery.
But here’s the thing…
If you haven’t been through this, you should listen up.
I appreciate it when people say I am brave, don’t get me wrong.
But I think getting a spider out of the shower stall is more brave than surgery and chemo.
Because when you find a spider in the shower stall, you have a variety of choices, and removing the spider is probably the bravest.
Having surgery, getting a cancer diagnosis and doing chemo… well, that situation doesn’t come with very many choices and none of them are good.
So you go with the least awful of the two.
That doesn’t seem so brave to me.
I think people doing chemo often demonstrate bravery in the process of doing chemo, but I think making the choice to try to stay alive is pretty basic, really.
I think this labyrith of ideas and viewpoints in my head will be untangled in a big, ongoing process.
And maybe it will never get all the way untangled.
I am nowhere near the end of trying to figure it out, and I am still trying to mix in with the regular herd and get on with things.
It’s all a lot to think about.
And now that I am not laying on my ass 24 hours a day, there is an awful lot to do.
What a long, strange trip it’s been.
Still, I am happy to be here.
And still thinking.
This may not make a stitch of sense to anyone but me.
Actually, it may not make any sense to me either.
How about that?
Happy Mother’s Day.
Well, I am back… and tanned and rested and relaxed.
For folks who don’t know, a bunch of my friends kicked in and made it possible for me to go to Kauai for 11 days.
There was me, and the woman, and two really good friends, who pretty much came up with the idea and engineered the whole thing.
Hooray for them.
It was swell.
It was amazing.
We swam with turtles.
We spent an afternoon with a Hawaiian monk seal on the beach in front of us.
We read books.
We went to the wettest place on earth.
We camped on the edge of the Napali Coast for 5 days and watched the full moon light up our campsite every night.
We had a picnic on Honolulu Harbour between flights on the way home.
It was great.
A huge thank you to everyone who helped make it happen.
Elaine and I are going to put up a page of photos and commentary just as soon as we catch up on all the things that we neglected for the last two weeks.
So, I had 11 days in paradise, came back, slept a bunch, and went back to work today.
It felt so much like a normal person’s life, it was all a bit odd.
I am now on the edge of being normal again. I am looking at the days of the week and saying, “I work these days and these days over here are my days off.” rather than saying, “I have to do bloodwork on Monday and then I have to see my GP. Tuesday I have an acupuncture appointment and then I see my oncologist.”
It’s kind of weird sliding back into real life.
I remember how very cranky I got last year when I realized that my entire existence was being defined by an illness.
Now I am coming out the other end of that, and sliding back into real life.
It’s weird. Kind of spooky, and ultimately good.
And since life is always a mixed bag, I feel really sad tonight that Cancerbaby has had a recurrence.
I think it’s a fear we all live with, and I am so sorry to hear that this has happened to her.
I am thinking good thoughts about how she will smite the bastard this time around.
Aloha and Mahalo