So, I have been thinking of buying some of these lovely plastic bracelets.
I know… they are plastic.
And I know, they are yellow..
But I have been thinking about getting one.
Thing of it is, they get sold in lots of 10, so I need to find a few peeps to fob a few off to.
If you think you’d like a little piece of this yellow plastic action, drop me a line.
You know how…
Go ahead.
Somewhere along the line, I think it was in October, my oncologist was away at a conference and we met with a different oncologist, and she has a bit of a different style than my regular guy.
One of the things she said was that I needed to understand that, even though I was completely chomping at the bit to be finished the chemo, a lot of people experience a real crash after the chemo.
As she said, it was during that period of time that they start to reflect on what they have just gone through.
I thought that was worthwhile info at the time but I couldn’t imagine not being elated every second of every day in my post-chemo survivorship days.
And now I am in them.
And I am not depressed, but sometimes I do struggle to make sense of what just happened to me and my happy little life.
And I don’t mean that as a complaint, because really, all things considered, I think I was really lucky in lots of ways and really well taken care of on so many levels.
I don’t feel like complaining about the chemo days because I know I could have had it so much worse.
Still… it’s a lot to make sense of.
And sometimes I don’t even know where to begin.
Maybe if it was all over and I got a blue ribbon and a pat on the back and a guarantee of no more cancer ever.
Right now I am in a sort of limbo, at least that’s how I feel sometimes.
Still, it beats laying around popping steroids and watching my hair fall out by a long shot.
The really good news is a lot of the things I lost while I was doing chemo are coming back.
I think in the next couple of weeks I will be able to go out in public without covering up my stubbly little head.
I am pretty pleased about that.
I pretty much have full feeling in my feet and hands now.
I had neuropathy from the chemo, which is a really common side effect. Now it is almost completely gone.
And my “chemo brain” has been almost eliminated. I think.
Well, suffice to say that my memory is way better than it was a month or two ago, though it probably isn’t perfect now and who knows if it will ever be.
Still, happy to have made some progress on that.
And my veins are coming back.
They pretty much got corroded into oblivion during the chemo and poked to bits with the constant bloodwork.
I am pretty happy to see them making their way back.
Okay, kiddies, it’s time for this post-chemo cowpoke to saddle up the pj’s and bunk down for the night.
Later…
For those who still check here…
Life is pretty good right now.
My hair is growing in, slowly but shirley.
I still tend to wear a bandana when I am in public, but I am starting to go bare-headed around my house when other people are here.
That’s a step forward.
And the eyebrows are almost all the way back.
I am going to the gym and trying to shave a few of the cupcakes off my waist so I can squeeze into my old jeans. And also trying to build up my strength.
It’s good.
I like spending time at the gym.
I’ll be really happy when I can ditch the pants I have and get back in my old 501’s.
What else….
I spent about an hour today snorting around in the garden. That was nice, really, really nice.
Meanwhile, we are expecting a baby.
Thankfully, it isn’t our baby.
Whew!
But some close friends are gonna have a wee baby, any day now, and we will be there to, well, to do the things they ask us to do.
It’s all kind of exciting, in a sort of terrifying way.
Hooray for them.
And now, the GF and I are about to go to a going away party for our Aussie friend, who is heading back to Australia for a while.
Thanks for everything you’ve done for us, JC.
See ya on the rebound.
Hey!
I looked in my mirror today and realized that I have eyelashes!
That was a really good thing. It makes my face look a bit more normal.
The hair on my head is doing its best to grow back in, and it is all soft to touch because it is really fine.
Basically, it’s baby hair.
And there is a reason that our hair grows in like that when we are babies. It is because we aren’t going to remember how long it took to grow like regular hair because we are just babies and we don’t know any better yet. We are babies and have not yet become addicted to styling products.
Also, when you are a baby, people just think you are sweet for being a little pudgy squirmy thing.
It’s less sweet when you are my age.
Still, it’s all coming together and I am thankful for that.
Elaine has said for a while that every day my body changes. I think I am beginning to see it, partly because I have the whole hair thing going on, and also because I have been going to the gym and trying to be a bit more active. As a result, my moon face is fading and my cheek bones are starting to be evident again and that’s good.
Also, I was out in my yard yesterday and I was stunned and thrilled to see that my crocuses (croci?) had come up. I thought they were toast when the city came in and put in a new sidewalk outside our house. But hey, if you want to live at my house, you have to be resilient and the crocuses have poked up through the new dirt the city boys left behind.
They are spectacular and it makes me feel like spring is on the way.
A bit premature, since it is still January.
And I have all kinds of daffodils and tulips that are poking their green bits up through the yard, so there is a promise of some colour coming our way soon.
Happy, happy, happy.
Still reading this site?
Well, good for you.
I appreciate you checking in, and to show my appreciation, here is a little tidbit of non-cancer related humour.
The Washington Post’s Style Invitational once again asked readers to
take any word from the dictionary, alter it by adding, subtracting, or changing one letter, and supply a new definition. Here are the 2003 winners:
1. Intaxication: Euphoria at getting a tax refund, which lasts until you realize it was your money to start with.
2. Reintarnation: Coming back to life as a hillbilly
3. Bozone (n.): The substance surrounding stupid people that stops
bright ideas from penetrating. The bozone layer, unfortunately, shows
little sign of breaking down in the near future.
4. Foreploy: Any misrepresentation about yourself for the purpose of
getting laid.
5. Cashtration (n.): The act of buying a house, which renders the
subject financially impotent for an indefinite period.
6. Giraffiti: Vandalism spray-painted very, very high.
7. Sarchasm: The gulf between the author of sarcastic wit and the person who doesn’t get it.
8. Inoculatte: To take coffee intravenously when you are running late.
9. Hipatitis: Terminal coolness.
10. Osteopornosis: A degenerate disease. (This one got extra credit.)
11. Karmageddon: It’s like, when everybody is sending off all these
really bad vibes, right? And then, like, the Earth explodes and it’s
like, a serious bummer.
12. Decafalon (n.): The grueling event of getting through the day
consuming only things that are good for you.
13. Glibido: All talk and no action.
14. Dopeler effect: The tendency of stupid ideas to seem smarter when
they
come at you rapidly.
15. Arachnoleptic fit (n.): The frantic dance performed just after
you’ve accidentally walked through a spider web.
16. Beelzebug (n.): Satan in the form of a mosquito that gets into your
bedroom at three in the morning and cannot be cast out.
17. Caterpallor (n.): The color you turn after finding half a grub in
the fruit you’re eating.
And the winner:
18. Ignoranus: A person who’s both stupid and an asshole.
Just a quick note.
Things are coming along, slowly but surely.
I find that one of the biggest challenges is maintaining some degree of patience while I bounce back. Which isn’t to say I am having great hairy tantrums or anything, I just expected I would be way closer to what normal used to be by now.
But I am getting there.
My hair is making a valiant effort to come back, and I suspect I will be looking pretty normal pretty soon.
My energy level is improving, though a whole day of work is still out of the question.
And then there is sorting through everything that has happened over the last few months and making sense of it, and integrating that experience into the current way I see my life and balancing it in my expectations for the future.
Does that make any sense to anyone who isn’t me?
I have no clue.
Basically, I need to figure some stuff out.
On a different front, I went snowshoeing a couple of weeks ago and I have some pictures I am about to put in the gallery, but I am having a wee wrestling match with the program right now and I won’t be able to upload them till I get that fixed.
On yet another front, we are waiting patiently for a little baby to be born into the fold. That will happen any day now. That’s all kind of amazing and wild.
More about that when it happens.
More as it happens.
Spike
Okay, so here we are, 2 months since my last chemo treatment and a month before my first post-chemo bloodwork.
Kind of in limbo right now.
On one hand, I think it’s important to explain to people that, while my test results were looking really, really, really good during my treatment, that is not a guarantee that I am home-free and out of the woods and that everything is groovy.
Basically what it means is I made it through chemo and I am in the group my doctor “considers most optimistically”.
But I will be having tests every 3 – 6 months for the next 7 years and we will wait for test results and see what happens from there.
I just want to mention that because a few people have said things to me that indicate that they think that since I lived through the chemo process, I am good for life, so to speak.
It’s more complicated than that.
I am gonna spend the next 7 years looking over my shoulder and waiting and wondering, and… still, I’ll take that over what’s behind door number two.
So, in a month I go for my first post-chemo bloodwork. I am trying to be really calm about all that, and really, there isn’t much that can be done about it, one way or the other.
Still, in my mind, having a clean test the first time is obviously something I am hoping for. I’d like to see that the cancer hasn’t come back since I stopped doing the chemo. But I won’t know that for another month.
In the meantime, I am trying to reconstruct my life.
My hair is doing a good job of coming back. Elaine claims that there are days that she can see it grow longer over the course of a day.
Hopefully in the next month I can get back to being bandana-free.
My stamina is getting better, I guess, but I am still surprised by how easily I can get worn out.
I recently spent a day trying to do some legitimate work and it almost killed me by the end of the day. I couldn’t believe how tired I was!
And that was after 7 hours. I used to work 12 hour shifts.
Damn…
So, that is going to take some work, getting my strength up enough that I can go back to work.
I *did* go snow shoeing yesterday and that was a blast (pictures will be up in the gallery soon.)
But that wore me out a lot too.
I don’t have as much stamina as regular people, but it’s way better than when I couldn’t walk to the store.
Little by little, things are sliding back into place.
And that’s good.
As I am sure you know, my co-workers got together and sent Elaine and me off on a wee dream vacation to the Wikaninnish Inn in Tofino.
It was completely over the top and something I will remember forever.
I uploaded some of the pics to my gallery.
You can see them here
And thanks so much to the folks who made that happen.
It was incredible.
I’m thankful too. We’ve made it through this last year with a huge amount of love and support and help from close friends and total strangers. I’m thankful all the time. But here’s something weird that I figure you only get to know if you’ve been thankful a lot in your life…
I’m kinda sick of being thankful-needful. I’m not at all sick of the wonderful people who are so damn nice to us; I’m sick of being on the “needing the help” end of the thankfulness. I’d rather, when it comes down to it, be on the “giving” end instead of the “receiving” end.
So… I can’t wait for our little boat of life to find calmer waters so we can begin the process of giving some reasons for thankfulness back. It’s close. I can feel it.
On the up side (another up side), it’s fun watching Spike’s eyebrows grow back in. We both missed them!
-Elaine
Well, welcome to 2005, everyone.
I hope you and yours have a spectacular year.
Also, I am hoping that me and mine can have a better year than last year.
And, that said, and not to go all Oprah Winfrey or anything, but it wasn’t all bad.
For one thing, my g-f proposed, and that is huge and fantastic!!
And there were lots of great moments, in spite of all the hard parts.
And, not to sound too much like a self-help book or anything, but there were some really good parts that came around because of the hard parts.
Lance Armstrong says that if he had to pick between being a Tour de France winner or a cancer survivor, he’d pick the cancer survivor.
And I don’t think he is just meaning, ‘whoa, glad I ain’t dead.’
I think he means that it is a bit like being thrown in the fire, and you come out different, and hopefully stronger, in the long run.
This last year has been a wild one, that’s for sure, and I am more than happy to make a fresh start with 2005.
But I have seen a whole lot of the good in people in this last year.
People have been really really kind to me and to Elaine.
It’s been a really interesting experience in real-life human behaviour, including my own.
I am only starting to have time to unravel some of the stuff that I have gone through in the last year, and I am not really sure where to begin. I feel a bit like some old spaceship, coming in for landing and all banged to shit from smashing into space debris along the way.
But I made it through a huge thing, and I am still learning how to exhale.
And, the fact is, I don’t quite know when I get to exhale. Maybe I don’t get to completely exhale for a while.
I go for my first post-chemo bloodwork in February. I confess I am a bit apprehensive about that, but I am trying to appreciate each day for what it is and not get all future-trippy about things.
Someone started a sentence to Elaine by saying, “Now that your girlfriend is better….” and I confess, I was confused. Because really, right now, I am done chemo. For now. Assuming everything stays good.
But it doesn’t mean I am all better.
It means I am done chemo, and we wait to see how well it all worked out.
And for sure, I want to get my life, and Elaine’s life, back in order and back to normal, whatever that means to us now. But I want to point out that it was kind of unlikely that the chemo would have killed me. The point of the chemo is to kill the disease.
And now we wait to see if the chemo worked in a long term kind of way.
That’s part of what is on my mind now.
That, and trying not to think about it and just get on with life, because you’d think by now I would have learned to enjoy every single day.
So… looking ahead, I have my fingers crossed.
And I am grateful for the things I have learned.
And I want to take the time to sort through some of the stuff that has happened over the last while. It’s been a bit intense.
One of my favorite things that happened in 2004 was going to the Metallica concert. It was just so fun.
I am really glad we got to go see Cirque du Soleil, especially since I got to go before I started chemo and got too sick to be in public. It was a great show.
I am also really glad that I got to go to Tofino, and to spend time on and around Vancouver Island.
And meeting the uber-rich man in the steam bath of the Wickaninnish Inn, the one who told me “cancer people have to stick together”, that was a highlight for me too. Because I realized I actually did have some common ground with this guy and that was kind of incredible. And he liked me because of that, and we could take it from there. That was incredible.
My cats have been an endless source of delight, amusement and comfort.
My girlfriend has been flawless in all this, and should get the Nobel Prize or something.
I’m really glad I had such a good surgeon. He wasn’t a really chatty kind of guy, but he stayed late on a Friday night and got the job done, and did a good job, and I am thankful for that.
I am really thankful for all the friends who came to visit at the hospital or came by the house or helped get firewood or cut the hedge or took me out for a car ride when I was too messed up to be able to drive, or bought me a t-shirt, or got my prescriptions for me, or hung out with me through chemo, or returned my library books, or invited us to dinner (whether or not we actually made it), or the folks who shaved their heads to support me (because I was *so* unhappy about having to be bald and it was really hard, and those guys were so great). I am grateful to the people who polished boots or had a bar night or a party of some type to raise money for Elaine and I. Thank you.
I am grateful for the friends who came and helped me cut the lawn, or clean up the yard, or take out the recycling and the garbage.
I am thankful for the folks who gave me pants when I outgrew my old ones.
I am grateful for the people who I reconnected with after losing touch over the years. Lots of people came back and jumped in and helped, and that was so cool.
I am really thankful for the trips I got to take out of town, and for the people who helped make that happen, in so many ways.
I am thankful to have been able to make a quick side trip to Quadra Island, even in the dark.
I had a wonderful time on Hornby Island.
I had a great time in Tofino.
I am lucky to have bosses who held my job for me, and who cared about how I was doing the whole way along.
I was lucky to have co-workers who came by and had coffee and brought picnics and stuff.
I have a great GP and she has been completely available to me and totally supportive of me.
I think the folks at the BCCA have been really really good, even if people like me do present some challenges for them. I think they mostly don’t let on that I am kind of peculiar by their standards, and I have never felt like I was getting second rate treatment because I am a big freaky queer.
In fact, I think the BCCA deserves a round of applause for their “we don’t discriminate on the grounds of…” policy and their follow through with actually living it.
So, yeah, this past year has been incredibly hard in a lot of ways.
And there have been some really good moments.
Thanks to everyone for the things you did, or the sacrifices you made, I appreciate it. I know that some stuff happened behind the scenes and I don’t know about it, but know that I understand that lots of people did lots of things and made lots of sacrifices so this can be easier for me, and for Elaine.
Just thanks.
And hopefully, you got something back along the way, one way or another.
We are having a small Open House tomorrow, January 2, to say thanks to people. If you are part of our crew, feel free to drop in between 1 and 6 pm tomorrow. If you need directions, give me a call or e-mail me.
And finally, here is a little movie (below) that Elaine made of me stomping in the surf at Tofino. I had been walking in the water quite a bit and my boots were being remarkably water-proof. While this movie was being made, the water-proof status gave up the ghost and you can hear much whining about all that.
You’ll have to download it to watch it. I hope you enjoy it and get some small idea of how fabulous it was to be in Tofino.
Happy New Year to all.
Spike
Download file
I don’t know how I missed it when it happened this summer, I guess I was under the weather, under the covers, and out of the loop. But Lance Armstrong won the Tour de France for the 6th time.
I never really thought that some straight white boy from Texas would serve as some kind of inspiration for me, but then I got cancer and I found all the rules had changed.
For anyone who doesn’t know, Lance Armstrontg was an up and coming cyclist when he was diagnosed with testicular cancer. Things looked really bad for him but he became really involved in his treatment and go really good medical help and he beat the odds.
He has been cancer-free for 7 years now.
If you want to learn more about him, go here.
I think it’s great that he is out there, raising money for cancer research and also showing people what they can achieve after cancer.
I think he is the coolest straight white guy to come out of Texas since Lyle Lovett.
Damn straight.
Just a quick note to say I hope everyone is enjoying the season and taking lots of time for food and fun and friends.
More later.
It’s a long story, gushing with lots and lots of details.
Here is a wee bit of the story.
My co-workers got together and sent me and the gf away to Tofino. To the Wikaninnish Inn.
We were picked up by a limo.
We were flown there in a plane.
We were picked up in Tofino by a fellow driving the fanciest, most tricked out van I have ever seen.
The hotel is basically a world class resort and they make a point of looking after you.
We had a jacuzzi in our room, and the tub looked out onto the ocean.
Our bathroom was huge!
After oozing out some of those old chemo toxins in my jacuzzi, I would then hop in the rather spacious shower.
Nice, nice, nice.
I spent a lot of time in that jacuzzi.
Oh, and the room is stocked with a bunch of Aveda products.
And everyday, the housekeeping staff come by and put more Aveda products in the room. I was kind of kicking myself that I was under-utilizing the shampoo.
The restaurant was spectacular.
The food is really, really delicious. And ask anyone who knows me, I am a food snob.
The food in the dining room was comparable to the food at Sooke Harbour House.
And the spa.
I arranged for a spa visit for Elaine.
It was a surprise for her. So, obviously, she didn’t know about it.
So, imagine my horror when Elaine was still lounging in the tub in our room a few minutes before her appointment. I had to ask her to get out of the tub to come on an adventure with me.
She came willingly, even if it was a bizarre request.
I took her downstairs to the spa and dropped her there and she returned, and couple of hours later, all googley and mushy.
It was really good.
It was so good that the next day I had to go for an appointment myself.
It was all kind of a trip.
The staff have you select the scent for the oil they are going to use on you, all while your feet are soaking in a warm water bath with marbles to smooth out the crinkles.
My massage was great.
And afterwards, I sat in the steambath for about an hour and a half.
I’d been sitting in the steambath for about an hour when another guest, an older man who was on the same plane as us, came in.
We started chatting, because that’s what you often end up doing in a spot like that when there is just the two of you.
I mentioned I hadn’t been at work for the last few months.
He asked if I had been off doing chemo.
I said yeah and he told me about how he had had prostate cancer. We talked about treatments and attitude and Lance Armstrong.
He said cancer people have to stick together.
He said he is ‘involved with’ a company that is doing the first stage of clinical trials on a drug that has been developed to treat prostate, ovarian, and lung cancer.
It was all kind of amazing how he went from the old guy on the plane to the kindred spirit that I like gabbering with.
And when we got back to Vancouver, he and his wife hugged me good-bye.
And I let them.
And I don’t really do the hugging thing much, but it seemed like the right thing to do.
And, beyond that, we spent quite a bit of time on the beach.
It was really quite mild for December, so we could go for nice long walks. The photos should make it to the gallery soon.
Then the time came to head home.
We checked out and got back in the tricked out van.
We got to the airport.
The plane that was supposed to take us home couldn’t land, because he was having some visibility problems.
He took 3 swings at it and then took off.
We stood around, with our new-found cancer allies and kindred spirits, and tried to understand what happens next, after your plane abandons you.
It ended up that they sent us by cab from Tofino to Nanaimo.
I guess it was handy that our airport check-in fellow also doubles as the cab driver in Tofino.
At the last minute, this hippie gal showed up and she was on her way to Vancouver too so there were six of us, including the driver, in an SUV, driving Highway 4.
I love that drive and I had been missing it, even though flying is great.
Unfortunately, hippie gal sat in the SUV and coughed the whole way to Nanaimo and now my girlfriend is sick (for the first time in almost a year.That really sucks, especially on the week of Xmas.)
A few hours later, we arrived in Nanaimo.
Our pilot was there, waiting for us.
We hopped into the plane, and we were back in Vancouver lickety-split after that.
It was nice to get home.
Then we hopped in the bath, splashed around and got out and went to my staff Christmas party.
That was a rather startling contrast, but it was really good to see some of the folks again.
It was an amazing week and a fabulous experience.
Really, it was the trip of a lifetime.
Thanks to all the people who made it happen.
And now, I have to go take my Vitamin C, since I have a strange tickle in my throat, and wouldn’t that just suck if I got sick too.
Whew!
Me and the woman just got back in town from this rather spectacular vacation that my wonderful co-workers arranged for us.
See, a bunch of my co-workers got together and got us a 3 day vacation here.
It was all kind of amazing, and we have tons of pictures and mini-movies that we will plunk into our galleries soon.
It was an amazing trip.
And I am going to sit down and write up the event in a way that can hopefully do it justice.
In the meantime, I just want to say that it was amazing.
And thank you to all the folks who made that happen.
It was totally incredible.
You guys are amazing.
Okay, it totally sucks to have cancer, and to have had cancer, to have gone thru having cancer, whatever way you want to describe it.
But I have to say, I have been the recipient of some spectacular kindness since I got sick (not to imply I was terribly hard done by before).
This last week, I got to go to Hornby Island for a few days, and it was really, really great. I just got back this evening, and I am still getting settled, but it was really great.
If you are looking for a quick getaway to the Gulf Islands, you should really consider going here . I did, and I had a really good trip.
I realized a while ago that I have just been marching through this whole experience and I have just clenched my teeth and white-knuckled it through this whole experience, and I haven’t taken the time to think it all through. I know that may sound strange, given how much time I have spent laying around in my pajamas over the last few months, but I wasn’t really ready or willing to ponder the whole thing till I was finished.
So, now I have a bunch of thinking to do, and I was lucky enough to get hooked up with the Hornby trip.
Thanks to everyone who made that happen.
By the way, look at that hair coming in, eh?