Cancer, oligodendroglioma, Uncategorized

Oh ya, I still have brain cancer…

So let’s get a out of the way since I haven’t written on here in a long time.

  1. My writing skills are probably a little rusty as I’m pretty out of practice.
  2. It’s been almost 3 years since my craniotomy and I’m still feeling good albeit still a little deficient in my language skills.
  3. Chris Cornell passed away and I feel like I’m still in mourning.
  4. Found out on Monday I need to have chemo and radiation.
  5. I got a Great Dane named Zeus.
  6. I really should prioritize my lists better.

That’s right I said a Great Dane named Zeus!  I wish I’ve been able to have a little more time to spend training him.  He’s just a big dummy and/or we’ve forgot how much extra work a new(ish) puppy is.

IMG_2448

Memories are a tricky thing I guess.  I haven’t really needed to think about this whole “cancer” in such a long time.  It’s funny how everything ends up being the new normal and then all of a sudden BAM!  You find out that “oh ya!” that’s something I still need to think about.

So the result of my MRI was much the same as previously small almost little to no growth between the last scan.  Unfortunately when you compare the first couple post surgery MRIs to the last one there’s enough growth that they’d like to continue treatment.  I always knew it was something I would have to do down the road; I didn’t think it would happen so soon.  So there it is 5 weeks of radiation (Mon-Friday) and following that I think something like 6 months of Chemo.  So not only do I get to fill my body with poison I also get to irradiate my brain!

I’ve resisted the urge to Google it this time since the last time the term “Brain Necrosis” really jumped out at me.   I’ll eventually google it as that’s my nature but until then I’ll live in blissful ignorance as I try to process it.  Yesterday I barely cried at all!  I do feel a bit depressed though although I’m sure I’ll soon find humor in it again.  Good news is I should fit those 2 shirts that I saved from when Gill and I started dating (we all need a goal).

Why am I listening to listening to Chris Cornell’s album “Songbook” on the record player?  I because I figure I should get all my sad emotions out all at once so I can move on with my day.  When I woke up the day Chris Cornell died saw it on Reddit I was legitimately in shock, I wanted to think it was a mistake, I later cried in my car (I’m man enough to admit that).  Sounds like my drive home from the Cancer Clinic “Hey-yo!”.  But when I say in my list above that I’m still mourning his death I actually mean it.  Every time I hear him sing acoustically it makes me emotional.

 

So that’s what I’m doing this week…processing.  That reminds me I’m going to have to run out and get some stuff for making White Russians because we both know that’s going to come up again.

 

 

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Just because you’re offended doesn’t mean you’re right

Nope – not dead yet.

Just nothing much to write about right now.  Still have a lot of trouble with spelling so it’s spell check for me…or my former arch nemesis google (people say you can only have 1 arch nemesis but I strongly disagree). Thus the lack of posts – since it takes me so long to come up with remotely interesting idea and I lose interest halfway through.  I make this shit up on the fly people!

I was looking back on old posts on FB since Gill’s out for a girls night and probably come home far longer than she said she’d be.  I was actually checking my FB security setting and I ended up going down a rabbit hole of old posts.  I ended up reading some old blog entries.  That was a fucking crazy time in my life.  Weird to think it was only a few years ago.   Just as a side note I saw a lot of comments/promises on my pre-surgery post about all of the “help” people were offer up.  In retrospect I’m disappointed in most of you.

I’m not really sure why people take things so seriously can someone not make an obviously ridiculous joke without getting offended by it?  This picture sums up why I love Ricky Gervais.

just-because-youre-offended

Sometimes I miss the days of having a “Free Pass”; Ricky Gervais can get away with calling people “a cunt”.  I should have used that word more when I could.

I’m currently listing to the new Third Man Vault package and I have to say – not the best package this time (maybe it will grow on me).   I think it’s time to listen to something else, I’m starting to talk crazy!
That’s right let’s mellow out a little – Jack White shouldn’t be blamed for my bad mood.

Actually I’m not really in a bad mood I don’t know why it is coming off like am.  That’s the trouble with making up something as you go is that I get halfway through these posts and they’ve turned down a road where I have am going nowhere with the story.  I normally (I literally just had to sound out “normally” to be able to spell it).  Where was I going with this?  Oh right…I normally just try to tie the blog post together with rug.

It would be interesting to post all my unfinished “drafts” at once.  Half the time I have to think about whether or not I made have already told a story.

FYI on my last MRI the tumour marginally shrunk, I’ve lost 40 lbs, I crashed Gill’s car, had my 11th wedding anniversary, (related) had the best meal of my life, and have only yelled at my kids 13 times today.  Are we all caught up now?

Goodnight.  I’ll post again when I get a night to myself in another 3 months.  Actually I have no idea when my last post was…there was a lot of them unfinished.

 

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Cancer, oligodendroglioma, Uncategorized

Take Me to Your River

It’s been pretty much been a shit week.  Luckily for anyone sitting on the toilet needing to read something on their phone you’re in luck!  Why don’t you also listen to a little Leon Bridges while you poop since I doubt your keep your record player in your bathroom.

It started off with sick kids & interrupted sleep (for Gill not me…but she’s no picnic with little sleep).  Then I got in a car accident on Friday which likely will likely result in a write off of our car.  It was sort of my fault but to be honest the blame should be on the lady who made a left hand turn in front of the car in front of me causing her to slam on the brakes.

Monday was the day though to really push me over the edge.  I went to see my neurosurgeon to follow up with my MRI from December.  Unfortunately when I got there he had been called into emergency surgery so I would have to come back later that afternoon instead.  I’ve said it before that I really don’t mind if my appointments get cancelled as that just means my doctor is the guy they call in those situations.  The last thing you want in your neurosurgeon is the guy who’s available all the time.  I feel bad for his administrative assistant as I’ve heard her being yelled at on the phone for these types of situations.  I actually have my appointments cancelled on a pretty regular basis so at this point I come to expect it.  I ended up coming back that day at 2:30 for my appointment.  No big deal I had already seen my neurologist about this scan (or to be more specific I saw the nurse practitioner) and her and the doctor had taken a look at my scan which had been done only 2 days before that.  The radiologist hadn’t had a chance to do the report but everything seemed good.   Fast forward to Monday and although my surgeon doesn’t neccisarily agree with the radiologist’s report it was time to have the chemo/radiation talk.  Just a heads up likely in the calendar year we’re going to likely fill you full of poison and possibly irradiate your brain (I’m paraphrasing).

Lucky for me he said I should not worry about it at this point and wait till after my next MRI to have any real discussions about it.  Phew!  I thought I was going to have to go on Google and look some of these things up.  The last thing I wanted to do was revisit mortality rates, side effects (including brain necrosis), and spend the next couple of days being depressed and crying.  No wait…that’s what I did do; that’s what anyone would do.  So here I am a couple days later working through it and trying to find the humor in it.  Luckily it takes a load off tax season as I don’t have to think about what I should contribute to RRSPs.  It’s also realized there’s a statistical chance that I could die before my 7 year old dog either from the brain cancer or in another car accident.  I guess it’s time to start living for the moment again and trying to “beat” this again.

The good news in all of this is that I started a ketogenic diet and have lost about 15-20/lbs since the beginning of Jan.

https://en.wikipedia.org/wiki/Ketogenic_diet

I’m just estimating my starting weight was higher than my last doctor’s appointment which was before the Xmas season’s poor eating and drinking habits.   And that combined with the possible chemo means that I could be fitting into my pre marriage wardrobe sooner rather that later.  Dare to dream.

I’ll also leave you with this gem of a song in case you’re not done your poop.  Until next time…

 

 

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49% Kirk, 51% Picard

I’m not really sure if this blog post is going to go anywhere.  I really don’t have much to write about tonight but I decided to throw on a little Loretta Lynn on the record player and see where things took me.  If you’re reading this then one of these scenarios has played out:

  1. I had one too many drinks and I thought what I had written was terribly funny or interesting and I decided to hit “publish”
  2. I had one too many drinks and accidentally hit “publish”
  3. I found my way somehow along the way and something seemed relevant.

I’ve been exhausted lately (more than usual).  It feels like no one with kids should actually complain about this because we’re all in the same boat; we need to just suck it up and move on.  I’m not saying it to gain any kind of sympathy.  More than anything it’s probably just an internal justification for my need to self medicate right now.  I just can’t seem to switch my brain off anymore, my every waking moment thinks about all of the things that I need to get done.  You would think that this would have been more of a problem when I was waiting to find out my fate post diagnosis to post surgery.

Side note: I just had my 1 year “Not dying on the operating table” party!  Let’s make it annual thing for as long as we can!

Lately the only way I seem to not think about work is by playing video games or watching episodes of Star Trek that I’ve literally seen a hundred times.  That’s not the self medication one usually uses (although I do dabble) but is definitely the better way.

There’s something about Star Trek that I have always found attractive:  There’s an idealistic version of humanity that exists where we’re no longer consumed by greed, we life in a world of equality (and in fact are a version of ourselves that we would actually strive to be), and our drive is to simply improve ourselves and the rest of humanity.  Tons of things have been invented through the ideas that were portrayed on that show.  Cell phones, MP3 Players, Tablets, etc.  They continue to build on other ideas.  People are trying to understand faster than light travel (and you know it will be referred to as “warp speed”) , matter energy transfer (transporters), holographic imaging, the list goes on and on.  Was Gene Roddenberry a futurist?

https://en.wikipedia.org/wiki/Futurist

I have been going through old Facebook posts recently and deleting the ridiculous things that we used to post on our “walls” publically when social media was in it’s infancy (I’m done 2007 – 2010 currently) and gave no regard for our privacy.  There are things that are slightly embarrassing, things that no one would have cared to read, people I don’t even remember being “friends” with, people that used to be friends, and a lot of wasted time (I don’t remember that last time I said “I’m bored…”).  I was slightly embarrassed about posts telling people: how hungover I was that day,  how much Guitar Hero/Rock Band I was going to play, or those old Facebook surveys we all used to do that told us whether we were more Captain Kirk or more Captain Picard (51% Picard 49% Kirk – which is actually the best score you can get), and any number of other immature posts.

A while back I watched “The Transcendent Man”.  It’s a documentary that features the inventor & futurist (not a nihilist – that would be too exhausting) Raymond Kurzweil and details the coming “singularity”.  It’s the moment where we can create artificial intelligence and it some respect become integrated with technology to the point that we essentially become immortal.  In fact, according to Kurzweil the first person to be “immortal” has actually already been born (based on how fast our technology helps us improve our upcoming technology).  When I first watched the documentary he seemed really interesting and inspiring…then I felt like he went off the rails a little. His hope was to be able to bring his father back to “life”.  He had saved a room full of his father’s photos, letters, etc…his personality .  Bat. Shit. Crazy.

Or was it?  I look at all of those conversations/comments, political statements that had no critical thought behind them, or posts informing everyone about how many days I needed to work before my next day off (yes this is something I used to do during holiday retail) and I wonder what my kids will be think of who I was when I was the tender age of 30.  But as far as Kurzweil’s ideas: that’s kind of a creepy parallel. I guess that’s why they refer to him as a futurist

Not a Nihilist man…

Maybe Silas or Scarlett will want to recreate me in computer (or machine form).  Maybe that computer or “android” will just be a sarcastic asshole to everyone.  But think about it…in the digital age our kids we have literally thousands of pictures of us to go through when we die.  Thousands of written references of who were at specific points in our lives.  What a stark contrast to our parents generation.  And our kids will grow up never knowing a world without it.  Do as I am, clean up that facebook page and that way when our children try to recreate us they’ll only get the most idealized versions of ourselves.  And all roads lead back to Star Trek…

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The Seaword!

I’m just going to let you know right now that if you’re if you’re feeling like you’re a little sensitive to some harsh language you should just stop reading right now.

I had an appointment to see a new neurologist yesterday (for those of you who may be confused that it different that my neurosurgeon) regarding lowering my dosage of my “rage pills”.   If you’re not keeping up; one of the side effects of my anti seizure meds is rage outbursts (some of you may have been on the receiving end which I may or may not have apologized for already).

I was referred to a doctor at the BC Cancer Clinic (there’s the first C-word).  As usual there was a questionnaire to fill out but this one was a little more depressing that usual.  Do you have someone to talk to?  Do you have trouble swallowing?  Have you thought about taking your own life in the last year?  Sweet…let’s start the day out that way!

Well none of this applies to me…I’m doing great since my surgery!  I’m only here to talk about medication dosages.  So I meet with the intern, she does the regular exam, asks me the regular questions, then asks me if I know why I’m here?  That’s weird…of course I know why I’m here.  I’m the one that ask for the referral.

She proceeds to tell me that my tumor is growing back and they want to talk to me about radiation and Chemo (there’s the 2nd C-word).   I should have prefaced this that I was previously told there would be no chemo or radiation at this point (post surgery) and that I had an MRI in May and met with my surgeon in August.  I was told that the MRI looked great and that in fact it looked better that the last MRI (post surgery).  Then out of nowhere this fucking cunt (chill out it’s not because she’s a woman) just spring this on me.  And there is the third c-word.  Then she leaves the room and let me sit there for the actual neurologist for about 20 min or at the very least enough time for me to text Gill and tell her that they want me to undergo chemo and radiation.  Cunts!  Sometimes I wish I was British because then the use of of “cunt” would be part of my regular nomenclature.

The doctor then comes in to discussed all of the information they had just let me sit there to try and process.  Apparently chemo and radiation MAY be in my future…1 year, 2 years, or 10 years in my future.  My tumor has not ACTUALLY shown any signs of regrowth and that it had “good” genetics.  There are still cancer cells which I already knew, since they clearly didn’t want to take out too much of my brain tissue during the surgery.  Although I don’t look forward to injecting my body full of poison and irradiating my brain, I can deal with the fact that it MAY be something that I’ll need to deal with at some point.  But those fucking cunts couldn’t have started the conversation with that?  They couldn’t have maybe let the actual doctor have the conversation with me?  Instead they let the intern bring it up?  Don’t even get me started on the misinformation that I received.  Those cunts are lucky that my “rage pills” didn’t take control of me.

On a more light hearted note I can now reduce my dose of “rage pills” from 3000mg/day to 2000mg/day.  And silver lining I can now play the “chemo” card.  Ahhh Cancer…the gift that keeps on giving!  Fucking Cunts!  There are a lot of exclamation points in this post because I am still angry about this.  But the reality that a lot of doctors are cunts and although it’s easy to say “Scott why don’t you just find a new neurologist?”, it’s difficult to think about switching back to a neurologist who works out of a dingy office in New West vs a doctor who works at the BC Cancer Clinic (even if he is an motherfucking cunt)!

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I got 99 problems but a tumor ain’t one

I got my MRI results back a couple of weeks ago and so far it’s all good.  So much so that my neurosurgeon (who is difficult to get into) doesn’t even need to see me for the next 5-6 months. I am trying to get in to check about adjusting my medication…it would be great if I could lower the dose on my mother fucking rage pills!  Regardless, I did hear the good news from my family Doctor (he’s easy to get into due to some inappropriate comments to women…yada, yada, yada, he’s only allowed to see male patients now).  It was a relief to hear it even though I was pretty much expecting that result.  The thought of having to start this all over again is sort of a cloud that looms over me now despite all of the positive news since the surgery.  It will have been 9 months on July 9th since I went under the knife (or cranial saw).  Long story short I’m in the clear for now:

Nothing beats a good cover song.  Here’s a few of my favourites if you’ve got a couple of spare minutes. And let’s be honest I think we all need to slow our lives down and appreciate the little things because we all have 99 problems and a tumor ain’t one:

Unfortunately Gill has pretty much said I’m not allowed to put any of my music on the playlist for the drive back to Saskatchewan this summer.  Instead she suggested that we download the new Justin Bieber album (THIS IS NOT A JOKE!). I miss the days that I could say things like, “That’s not how I want to spend what little time I have left on this world.”. And last but not least…trust me wait for it.  I think I secretly want to be fat, bearded, and musically talented (2 out of 3 ain’t bad).

And just to keep my streak of referencing The Big Lebowski in each blog post…here’s one last one because “No one fucks with the Jesus”.

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Ramble On

Yesterday was MRI day! I almost forgot how uncomfortable it is to be shoved in a tube unable to move while listening to obnoxious noises for an hour. It’s actually pretty crazy that in such a short period of time that you forget all of these things. I actually had to ask where the MRI department was. Granted I had multiple MRIs at 3 different hospitals over the last two years so it all tends to blend together. But in general it’s difficult to look back on my life a year ago with the looming prospect of surgery, the barrage of tests, all the uncertainty that surrounded my life. I guess that’s just your body’s way of moving past it all. Luckily every 6 months or so I get to be reminded of it. I had to check more boxes on the intake form. It’s funny that you have to keep getting the rundown of the MRI protocol every time you go in, “I get it…you’re doing your job but this isn’t my first rodeo.”. There should just be a box that says have you done this more than 10 times…check! Then you’re good to go.

Side note I’m not sure if anyone invented this drink on there own yet but bourbon with ginger beer with moonshine soaked cherries is delightful. When you’re here next I’ll make you one.

I’m currently crafting a playlist for the trip back to Saskatchewan. We decided to drive out there instead of fly. With two kids. In a car. For 18 hours. What were we thinking? Yada, yada, yada…we bought a mini van spur of the moment one weekend which is why we could justify it. I have no shame in admitting that I love that fucking van! Except I accidentally scraped the side of a concrete pillar in less than 2 months in a underground parking lot.  How embarrassing…I am generally a really good driver it was a situation where my embarrassment turned to anger, turned to scraping up the van.  Side note I’m reading a book Gill recommended called “Daring Greatly”.

“It is not the critic who counts; not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs, who comes short again and again, because there is no effort without error and shortcoming; but who does actually strive to do the deeds; who knows great enthusiasms, the great devotions; who spends himself in a worthy cause; who at the best knows in the end the triumph of high achievement, and who at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those cold and timid souls who neither know victory nor defeat.”

Theodore Roosevelt

My man Theo had it all figured out I guess.  Weird to think that someone who died almost 100 years ago could impact/inspire others so many years later.  I think if you could go back in time and meet someone from 100 years ago you would go into it feeling somewhat superior.  Like in the “Modern Age” that we some how would know better than the generation before.  And in a lot of ways we do (See racial equality, gay rights) but in so many ways we are fundamentally flawed individuals regardless of space/time.

It’s like looking at your playlist from late 90s to early 2000s.  You thought you knew better than the music of the ’80s but in the end looking back all you want to do list sit back, listen to “Ramble On” because that’s when they really had it all figured out.

The older we get the less we worry about what people think about us (at least the 36 y/o version of myself thinks that).  It explains why the older I get the more I remind myself of my Dad.  I sometimes I fly off the handle (he once pulled a cab driver out of his window for cutting him off a bunch of times) yet still feel morally justified. I can’t hear for shit anymore and have actually said, “I can’t hear anything anything let’s get out of here.”.  I would prefer to hang out in comfortable clothes.  Long gone are those days of keeping up with fashion trends (why can’t I just find a nice pair of camouflage cargo shorts?!?!).  Next thing you know I will be taking up gardening and spending my winters in Arizona.

Here’s some vulnerability for you  a live version of Jewel singing “You Were Meant For Me” just came on.  That’s just a good song.  And just before that it was Lyle Lovette…deal with it!

I’m still manly.

Dare Greatly.

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