Feb 152007
 

hmac2.jpg

Another one of my OVCA cancer buddies died this week.
That fact fills me with so many emotions, I find it hard to say anything at all or to know where to begin. But I have heard the beginning is a good place to start, so let’s let the unfolding of time be the determining factor in how this story gets told.

When I got diagnosed in May of 2004, a friend of mine said she had a friend in San Francisco who also had some sort of gynie cancer and we could talk/swap e-mails/morbid support if I wanted. And that’s how I came to be cancer buddies with Heather McAllister.

She had been diagnosed 3 or 4 months before me and so was a good resource and mentor for me when I was right there at the starting line, terrified of what to expect. It was really important to me to be able to talk to someone who had done the procedures I was about to endure. Cancer patients/survivors get their love and support from their friends and loved ones, but the support one can get from a fellow patient/survivor is precious in its own way.
When I had bad side effects, and couldn’t sleep for days, Heather told me what drugs she had been given and what worked for her. That made a huge difference because sometimes information passes more quickly on the ground, among us in the silly blue gowns, than it does higher up, among the white lab coat set.

My chemo brought my CA 125 count down.
Heather’s first chemo didn’t take as well and she had to go back.
Again.
And again.
And again.

About a month ago, I got an e-mail saying she had decided to stop chemo, and that with that decision, the doctor’s thought she had 3 to 6 months to live.

On Monday of this week, I found out that she had arrange for an assisted suicide for the following day. By mid-Tuesday afternoon, I was receiving e-mails saying that Heather had taken the treatment and her fight was over and folks wished her well on the other side.

For me, it’s all so sad and strange.
We were cancer peers in many ways.
Diagnosed around the same time with the same stage of the same cancer.
I am sad, very sad that she died and profoundly aware of how easily that could have been me. I guess it’s a bit like having been in the trenches with someone.

Heather was a Fat/Social Justice Activist and the founder of the Fat Bottom Revue, a burlesque troupe full of really hot fat grrrls.

The thing Heather wanted to say, that message she wanted to leave us with, is that we should love our bodies, just like they are and appreciate all they do for us, and that we should love each other.

How about we all try that? How about that for a post-Valentine’s Day idea?

heathermac.jpg

 Posted by at 12:25 pm
Jan 142007
 

Welcome to 2007, folks.

Where to begin. Well, I am no longer on Galiano. It was great to spend that time there, gruelling as it was at times. I needed the distance and the isolation and the quiet, and I probably needed the lack of convenience, too.

I was really impressed with how quickly people on the island help each other. Things were pretty wild while I was there, with lots of power outages and frozen pipes and icy roads and fallen trees. It was interesting to see folks just help each other as a matter of course. Folks certainly helped me, and I hope I helped back in some small way.

In other news, I am back at the old homestead, at least till the end of this month, while I find my next home for me and the two bastard cats. I am awfully fond of stability in my life and I think life will be way easier when I know my next postal code. So, if any locals know of any reasonably priced, cat friendly digs, please drop me an e-mail.

Beyond that, I have been thinking a lot about the connections we keep and the connections that slide slowly from sight. It seems like the last 3 years have been full of people stepping up and others sliding away. I think I spent a lot of time being hurt by the absence of some friends and not enough time being appreciative of the folks who stuck around or came back. So I am going to try to shift that.

And finally, I saw the man in the white lab coat on Wednesday and he said that everything was just as good as can be and that my CA 125 is at lucky number 6, and I’ll take that over a year without eyebrows any old time.

Here’s hoping the new year brings you many of the things you hope for.

~~ Spike

 Posted by at 8:25 pm
Dec 032006
 

I received a light rap across the knuckles for having neglected my blog yet again.

So, first, island life.

In spite of enormous challenges, the island has been good. And challenging. And good.

As you may know, this part of the world got whalloped with a rather massive (by our standards) amount of snow. The snow made the island pretty. The trees were all dusted in layers of snow. So much snow, that many a branch collapsed and took out a fence or a power line. I was lucky, I had power for at least a few hours each day before it would croak again, and again and again. My neighbours lost their power last Saturday and went without even an  amp of juice until Thursday evening. And while my wee cabin heats with propane, most of the locals heat with electricity, so there were many busy fireplaces.
I was lucky with the electricity. Lucky that I had some and lucky that I wasn’t relying on it, (except to keep the mighty laptop purring while I lay on my butt, watching entire seasons of Buffy all over again).

I was less lucky with the water because our pipes froze the first night of the big snow. It was not completely dire because you can always boil up some snow and cook up some pasta. It’s just weird to keep picking bird seed outta the pasta water, but hey, everyone has to eat.
But there really is nothing quite as fine as a bath after a few days marinating in your own freeze-dried sweat.

I spent all day Wednesday and Thursday trying to get off the island because I had tickets to a show here in town. There were hurdles a-plenty to overcome.
On Wednesday, my big butchly truck was stuck on the ice and not capable of any sort of controlled movement. So, I set my heart of getting the early ferry on Thursday morning.
This ferry catching plan was made considerably more difficult when, on Wednesday night, the power went out in my cabin, and since I left every single one of my wrist watches at home, the only way I could find out what time it was involved firing up the laptop. And that meant prudently guarding the battery life (and not just watching Buffy reruns till I fell asleep) so that I could, at any time, fire up the laptop and find out the time.

So, Thursday morning I woke up, saw that it was 7 am, and realized that if I really hustled, I could make that 8:30 ferry. It would involve a great deal of motion, constant motion, but I was hell-bent on getting home at that point and if it meant dragging my cat and my laundry and my garbage and my recycling and my laptop and my guitar, each in separate trips, along that long path of ice that was once a road, well hell’s bells, I’d do it. I loaded myself down, all optimistic-like, with a duffel bag full of dirty laundry and began slipping my way down the lane, only to walk right past my truck. See, it was concealed beneath the two birch trees that had fallen for it and then fallen on it and sleuthfully disguised it from me. I did in fact walk right past it, didn’t notice it, just noticed something strange and wrong out of the corner of my eye.
And then I saw it was my ride to civilization, now slain, or at least on the ropes, not able to move an inch till the neighbour, the king of the Husquavrna, came to chainsaw me out.

I’m home now.
It took quite a few trips, back and forth, dragging drugged cats and such. I was second in line for that evening ferry.
Still all enthusiastic about making the Cherry Poppin’ Daddies show that night.
But by the time I got off the ferry and drove through the massive sheet of ice that was Delta, and then landed in my bathtub, I just couldn’t turn around and go back out into the drippy, awful night, apologies to firegrrl.

That’s your island life update so far.
I’ll be heading back sometime around mid-month. Spend some other chunk of time over there and then head back home once and for all and start looking for my next palatial estate. All you local folks, do drop me a line if you hear of any cheap, nice and cat-friendly places.

Other news…

The Globe and Mail piece has been enormous. It seems to have garnered the attention of various politicians. In fact, the week that piece ran, Steven Harper announced the creation of the Canadian Partnership Against Cancer,dedicating $260-million over five years on cancer prevention, diagnosis and treatment.
Erin Anderssen came back to all the original participants and asked us what advice or kicks in the ass (my paraphrase) we might give politicians wanting to do a better job, and she also wanted to know what advice we would give to newly diagnosed folks.
Somewhere in between my final papers and exams, I really want to throw my 2 cents in.

In other health related notes, things are going well in a general sense, but I do have to go get a bone scan in a couple of days because someone in a lab coat thought that might be a good idea.It turns out that it takes over 4 hours to do this test. It remains to be seen whether this one will actually happen because of some island-mainland communication screw-ups.

And after that, I will be hurled back into the land of blood-draws and visits with the oncologist. Thankfully I can make it through the holidays without *that* added stress. But it’s funny, because I can feel the dread mounting, slowly, even though it’s weeks away.

And finally, for folks still following at home, the old man has got himself another room in the hospital. The doctors say that this time his lung/breathing problems are not pneumonia. I don’t know if that is good news or bad news. But I think, and the doctors think, that having him in the hospital is going to be a pretty regular thing.

It’s weird the things one comes to accept.

 Posted by at 9:14 pm
Nov 222006
 

It’s funny being on an island in the 21st century. That old internet, even as a dial-up connection, just brings the world to your door. Even when your door is on a cabin with 15 amps of electricity and no hot water.

Not complaining. I am liking it.

Just so peeps know, the Globe is continuing to do feature articles on cancer, cancer patients, cancer survivors, the politics of cancer, and drugs and research all this week.

And one woman on one of my ovarian cancer e-mail lists actually scrolled through that enormous article and singled out the link for my page. For anyone who can’t make it through the whole article, which is intense, and who wants to see my little claim to fame, you can just go here:

http://www.theglobeandmail.com/servlet/story/RTGAM.20061116.wdayinthelife33/BNStory/cancer/home

It’s been interesting in a painful sort of way to read those stories. I confess, I made it through about 80% of the Saturday article and then my head collapsed. And has been experiencing major structural damage ever since. It’s weird to parachute back through time and remember all those feelings and fears, real fears. It was pretty intense. It was interesting to have all that happen while I am out here in my little cabin and more or less on my own. That was okay. Not fun, but okay.  And really, I am learning about being alone and figuring things out. So, it was a rocky ride, but it feels like there is a shift that is starting to take place, slowly. One hopes, anyway.

Anyway, all in all, it’s good. It’s hard but it’s good.

And I continue to be impressed by the folks at the Globe and all the work they have done on this cancer series. It’s painful to read, but it’s a good thing and I think it’s good for people to have this exposure.

Roger Dodger, over and out.

 Posted by at 10:54 am
Nov 182006
 

A few months ago I got an e-mail from a writer with the Globe and Mail, asking me if I would be willing to be interviewed about being a cancer survivor, and I said “well, sure”. The folks at the Globe were really thorough and conscientous and followed up lots of little details over and over again.

Today, that article came out. Much to my surprise, it’s the cover story of the weekend edition of the paper.
Here I am on Galiano, trying to find a copy of the weekend Globe, when there are only 10 copies delivered to the entire island. As luck would have it, I was able to snag two copies. Heh.

You can read the online version of the article here:

http://www.theglobeandmail.com/health/

I suggest you check out the slideshow. You will not get to see my now famous cancer survivor tattoo, but you can see a picture of me and Elaine on our last holiday together and a lovely shot that Elaine took of me playing with a dog on the beach on that same trip.

It’s great to have been asked to participate in this and Erin Anderssen and Moe, the photo editor at the Globe, were really considerate and smart and sensitive and just all-around good to deal with.

But my greatest accomplishment in all this is having created a situation where the Globe and Mail used the term “butch dyke” in one of its articles. I am told this has never happened before and I am all for pushing the envelope when it comes to respected institutions and language and gender and identity.

Please check out the article and also the slideshow. It certainly isn’t the whole story, but it is one part of my story and there are a lot of other really important stories in this article as well.

Over and out from the island.

 Posted by at 1:49 pm
Nov 142006
 

A quick update about life on the island.

I arrived here yesterday morning, unloaded my stuff and got settled and was immediately welcomed into a circle of folks.

Island life is very friendly. Folks seem very concerned for my well-being, which is interesting since I really don’t know these folks.

I walk around the island and ravens fly over my head and I hear them coming from the great “whoosh, whoosh” sound their wings make as the approach.

I drive by deer, standing quietly at the side of the road.

At night, I walk from one cabin to another and I am stunned by the stars above me.

I wake up in the morning and wonder why I am not being smothered by my cats, but hopefully I will remedy that in a few days.

I am not really an island person, but I like it here. I like having time to just let my shoulders drop a bit and that I care less about the things that I shouldn’t be caring about at all.

I like it. It’s quiet and friendly and good. My shoulders could still stand to drop down an inch or two, but I think this was a good move.

And I have e-mail, so please stay in touch.

 Posted by at 11:00 pm
Nov 022006
 

galiano-blog.jpg

this is where I am gonna be soon.

It’s just time to get away. I really like my life and I think I have mucho to be thankful for, but lately it’s been one ass-kicking blow after another and with the last nasty blow I started to feel like I was bleeding from the bone and I have nothing left to give to anyone and that my life has become kind of absurd so… it’s time to go away, and just settle down and hope that some of the wounds start to heal.

And in the meantime, and no, I don’t make this crap up, my dad has being hospitalized again because of…

wait for it….

pneumonia.

So, with that, all I can do is *hope* that things go well enough that I actually can go away to my little island paradise. This is the old man’s third bout of pneumonia in the last year and that just ain’t right. Fingers crossed.
And while I will be away, I will still be hooked up to the omnipresent internet, so do keep in touch, my peeps, and I will do my part to keep you up to date on the highs and lows of island life.

Roger Dodger – over and out.

 Posted by at 10:04 pm
Oct 092006
 

I know driving is very bad. It’s a very bad thing. It will probably be the end of North America society, I know. It is most especially bad to be driving a great honking 4×4 in the city to get to a friend’s house, a mere ten blocks away.
But sometimes there is good in the bad, and on a day, just the other day, I was doing just that, driving my great honking 4×4 from my home to a friend’s house, a mere ten blocks away.
And as I drove two things happened.

The first was I was completely smitten by the way the leaves are turning red. We don’t get so much of that in these parts and I think those deep colours are a marvelous thing, even it is about things ending and dying. At least they do it in a magnificent way. That colour of red brought up a sort of satisfied happiness that I haven’t felt in a long time, and it was so nice to feel it and just be blown away by that colour and by something that is so much bigger than me and my itsy-bitsy problems.

The second thing that happened, on the heels of the first, was I was struck in that moment by the thought that I am glad I am me and given the option, I wouldn’t want to be anyone else. Even though my life has been a shitstorm of unpleasantness and struggles for the last two years, I am glad I am who I am.

I’m not gonna say that I am happy I had cancer, but I am glad that I had the team of folks supporting me, and helping me find my way through it. I am happy that so many of the folks I know or have known over the years made a decision to show up and help. I had a really amazing group of folks, friends and loved ones and health care professionals, who did what they could to help me, and I am grateful for all that.

I could wish I had a better paying job, but I have a job that works really well with me getting my library courses so hey, I am not a bank president and I don’t have a yacht. And I know I am gonna have to squeeze to make ends meet over the next while…
But it all works for me for right now.

And I have some really good friends.
I am pretty much at the end of my rope when it comes to talking about whatever the latest crappy thing is that I am dealing with. Cuz frankly, if I didn’t know me and was just reading my text on-line, I’d say, “Whoa, that chick has a personality disorder or somesuch, cuz like Roseanne Rosannadanna said, it’s always something.”
Through the cancer, lots of folks showed up, some of them from out of the blue.
Now it’s divorce time, and lots of those same folks are still out there, propping me up with their care and attention and sweet words. I really appreciate the folks who have stepped up, especially lately, and patted me on the head, called or e-mailed to see how I am doing. Bunches of folks have made gestures to let me know that they care. Thanks.
And I am grateful to have been able to spend the last 5 – 7 years (depending on when you start counting) woven into Elaine’s life and she into mine.
Before it all went to hell on a handjack, we had the best time and had the best adventures, even when that was just going to get cat food together.

We were there for each other no matter what.
We had great vacations and we had a great time running errands. We had Christmas dinners that brought our friends together in our home and some of the best time was just the two of us at home alone.
It’s hard to stitch that gaping wound closed and wander off into the future but apparently that’s what we do now. So, this is me trying.
Dunk a chien, darlin’.

So, it’s been a rough ride and there have been losses I never anticipated and that leave me scrambling to find some new direction.

And even with all that, I am glad to be me, and wouldn’t want to be anyone else.

 Posted by at 8:25 am
Sep 292006
 

picking-up-the-pieces.jpg I stumbled upon this book at an event called Word on the Street last weekend.

The book is called Picking Up the Pieces : Moving Forward After Surviving Cancer. It’s written by Sherri Magee and Kathy Scalzo.

I’m not one for the self-help books as a general rule, but I have to say that from flipping through this book just a bit, I have felt much less isolated and much less like I am some crazy-ass disgruntled bastard who should just be happy about having made it through the fire and stop wandering around complaining about a life filled with uncertainty and chaos.

Folks in this book talk about the whole range of emotions cancer survivors go through and how we have to find ‘the new normal’.

I would recommend it to anyone who is a cancer survivor and to anyone who is trying to understand why some cancer survivors are not all about puppies and rainbows and cotton candy all the time. Some of us are still learning to crawl in this new crazy scarred up world.

The book is really fresh off the press so it may not be on the shelf of your favorite book retailer, but I would recommend it.

P.S. – For those that are interested, I uploaded the pictures of me and my friends doing the Winners Walk of Hope a couple of weeks ago. They are here:

http://spikeharris.com/gallery/main.php?g2_itemId=857

 Posted by at 4:39 pm
Sep 252006
 

Thanks to everyone who has written in with their support.

The situation really really sucks. Sometimes I feel paralyzed by the grief and then I think, ‘that’s not really grief, that’s more like agony’ and then I think, ‘well sometimes it’s agony and sometimes it’s an overwhelming despair’.
I know folks go through this sort of thing all the time.
It’s funny, cuz when I was doing chemo, lots of people went out of their way to tell me how brave they thought I was. I always found that odd, since I really had a limited number of choices and I was making the best of the lousy choices I had.
And I don’t mean to be freaky, but I just don’t know how to imagine myself on the other side of this, at that point in my life where I say, “Ahh, sure it hurt like the Dickens at the time, but I see now that it’s all for the best.” I can’t ever imagine thinking this was a good thing.
I reckon that day will come, cuz I have lived through lesser heartbreaks, but damnation, sometimes the best I can do is just slip into a wee coma and wait for it to pass. Those are the good moments.

I don’t know which arsenal of personal strength I am supposed to draw on to give me the strength and hope to make my way back to shore on this one.
In some ways, it’s like I lost my sense of purpose.
How am I going to carry on with the crazy world of cancer and all those follow-up appointments without holding each other’s clammy little hands?
Who is going to hold my hand so I don’t faint when I do bloodwork?
Who is going to keep me from coming right out of my skin and punching the lab technician when I do an MRI?
I guess we get tough and figure out how to do this stuff on our own. But I ain’t looking forward to it.
Really, I am scared. I’ve already gone to a few appointments by myself, which was weird and freaky, but I guess it was a good dress rehearsal for the new world order in cancer land.

Scared, scared, and scared, but one foot in front of the other. Off we go.
So far, I seem to still be at Ground Zero but I guess I can work my way somewhere safe from there.

But, thanks to everyone. Your kind words really, really do help me.
Thank you.

You guys rawk, as the kids now say.

Really. You all help a bunch.

Thanks.

 Posted by at 9:38 pm
Sep 212006
 

Let’s just get this over with on a global level, shall we?

I am madly in love with Elaine, and have been for a very long time, and, having said that, she and I broke up yesterday after 5 years together and some primo years of friendship before that.

I am heartbroken beyond words and I have no idea how I am going to put one foot in front of the other and carry on. Lots of folks know the grumpy side of me and so I suppose those folks will be surprised to know that I considered making Elaine happy my number one priority. And I was pretty successful at that in the beginning, if I do say so myself. And then the cancer thing happened, and that sort of messes up a person’s life. And then things just stayed phuqued up. As is the way with these things, we have our differing ideas about how we came off the tracks. In my opinion, we never got over the cancer stuff and we just got more and more screwed up and hurt and mangled. And then, we broke up.

So, I wanted more than anything to be the one who could make her happy, and, in the long run, I failed at that so miserably. And I feel such a spectacular degree of shame around that.

In case anyone is wondering how I am with all this, I can safely say that I would rather do another 8 chemo treatments than lose Elaine as my partner. She is the love of my life. But my life ain’t no Disney film, it’s more like a Russian novel, where you love the girl with your whole heart, but for whatever reason, that ain’t enough.
I don’t know how to do this and I am so tired of so much hard stuff. When do I get my vacation in Palm Springs, floating on an air mattress? Aren’t I due?

 Posted by at 12:38 pm
Sep 102006
 

ovca-blog-spike.jpgovca-blog-photo.jpg

Some friends and I did the OVCA Winners Walk of Hope, sponsored by NOCA. It’s the first time the walk has happened in Vancouver.

It was a beautiful day for a walk through Van Dusen Gardens and my little team raised over $1,000. It remains to be seen, but we may break the $2,000 mark. A big thank you to everyone who sponsored me or any of the other folks on my team.

ovca-blog-2.jpg

 Posted by at 5:29 pm
Aug 312006
 

Last week was really, really awful for me and I want to say thank you to my friends who jumped in and stood by me and kept my head above water.

I couldn’t have done it without you. And your help and support means a whole lot to me.

Thanks.

You know who you are.

And in terms of my dad, he has been treated for his pneumonia and has been released from hospital in Victoria and will make his way back to his home, which is 5 hours away, today or tomorrow. From there, there will be biopsies and tests and a process of finding out what exactly he has going on in his lung.

That’s all I got for now.

 Posted by at 11:27 am
Aug 232006
 

Two days ago, my brother called me to tell me that my dad was visiting my sister and had collapsed and was taken to hospital by ambulance. They diagnosed him with pneumonia and said they wanted to run some more tests on him. The pneumonia is extra distressing because he was diagnosed with COPD last year so these days any sort of lung issue is extra bad news.
They did a CT scan and found a nasty mass on his lung, which they are almost positive is cancer. They will be doing a biposy to make sure, of course, but in my medical experience, doctors don’t toss the “C word” into the conversation unless they have a pretty close-to-certain sense that they are right.

Me?

I am horrified and lonely and worried and so tired of all the hard stuff. Kind of feels like I have had my skin torn right down to the bone.

And I would rather gnaw through my own wrists than deal with my family, but you do what you have to do. I guess the upside of it all is that it means I pay more attention to the things that are really important and spend less time thinking about id-jits and stupid crap. I suppose I needed a break from that.

The Old Man. I dunno. It remains to be seen and I don’t know how much fight there is left in the dog.

Stay tuned.

 Posted by at 7:32 am
Aug 222006
 

okay… I created a team, Spike and the Van Dykes.

The site is kind of weird and cumbersome but if you want to sponsor me, you can go here: http://tinyurl.com/zarh3 .

and the sight of my smiling face will no doubt inspire you to pull out the old credit card. I know it happens like that for me, hence my credit card debt.

That’s it, that’s all.

Thanks, folks.

Spike

 Posted by at 9:50 am