HEY EVERYONE! LOOK... IT'S A NEW POST!!!
Yes, despite telling almost everyone I've come across for the past year "I think I should write another blog post soon"... I haven't. I think that makes about 15 people I've lied to (and about 5 I've lied to on multiple occasions). Fate changed all of that today when I had a celebrity sighting at St. Vital Mall. Who did I run into (or rather who almost ran into me... literally)? Why it was the one and only 'super-spouse duo' of Nelson Thiessen & Karen Theodora Thiessen (née 'Sterm...something')!!! In the flesh! (I don't know why people say that... it just sounds creepy, as though there would be a situation where you would say '...without their flesh!') [shudders]. Sorry, Nicole's been watching too much zombie TV lately... something about the "living dead"? It's something on Netflix that I refuse to watch because I don't find people eating other people entertaining. Not that there's anything wrong with that. Apparently some dude broke his leg fighting some other dude the other day. I also have no urge to see that footage (can you tell I'm not into UFC)? So where was I? Right... the celebrity couple. Nelson & Karen cleverly freaked the heck out of Nicole & I as we were attempting to do some London Drugs shopping at St. Vital Centre. As Nicole & I are polite Canadians (and I am as timid as a church mouse*) we tend to stay out of the way of fellow shoppers. When one does cross our path we move and apologize for our very existence (as any true Canadian should). Today the incredibly fashionably dressed Nelson & Karen PURPOSELY came upon us and cleverly cut us off so obviously, that had I been an assertive person I might have said "Hey, what in the name of Pete are you discourteous shoppers doing cutting my wife & I off like a couple of hooligans?!" instead of my natural reaction... to step aside, quiver in fear while tears well up inside my eyes and hope my wife is able to fend for herself. Well played you two... well played. No worries Nicole, next time I'll have your back ;)
Nelson, Karen & I subsequently had a long conversation about the most important topics in our lives these days (toasters, breadmakers, painting, and nearly-antiquated video games). I felt as though our friendship reached a new level. You can't speak about "single-sliced toasters", "the benefits & downsides of giftcards", and/or "roller painting vs. trimming the sides" without knowing someone in a way the deepest of joint zen yoga sessions could ever achieve. I say this having never attempted yoga (on anything other than a "Wii Fitness Balance Board"). But I digress... Didn't I put an asterisk above somewhere??? Oh right...
*SIDE NOTE: A quick google search for "timid church mouse" brought up a result from a book listed on Amazon. Page 196 of "Speaking the Truth in Love: A Christian Approach to Assertiveness" states "Tom is a twenty-five year old whose nonverbal behaviour at the beginning of counseling led one to believe he was timid, afraid, uneasy, and tense...Tom walked and gestured like a timid church mouse". Aside from the age being off by 4 years (almost 5) it is as though author Henry Virkler is describing ME!!! It must stem from the name. Perhaps I'm prone to doubt my own abilities... like a "doubting Thomas???" Oh come on, you knew that was coming!
I do believe there was a point to this blog when I started. I usually like to update you all on my "how's the whole brain tumour / terminal illness" thing, so... GOOD NEWS! I'm still alive :)
It turns our I'm not dead yet or looking to do so anytime soon! Anytime soon being defined as early 2014. Nicole & I continue to live our wonderful lives together on the edge of a metaphorical ice ledge hanging off the edge of a several hundred foot tall glacier with a complete drop off without anyone living within 160.934 Kilometres (100 miles for my American readers). All of that is a metaphor, however it should be noted we do still have the love & support of many around us. We have both found that with my health being stable as it has been for such an extended period of time (YAY!) people have a tendency to think "Oh, so Tom is okay now eh?" ("Oh, so Tom is okay now?" for my American readers). This can be frustrating, but I suppose we must look at it as a necessary part of the whole "living forever" plan I've been working on. Decisions continue to be hard to make long term. Right now we are focused on Nicole finishing school. She is in her last term completing her placement at the WCB (Worker's Compensation Board) as she works towards getting her Bachelor of Social Work. Nicole is perfect for the work she does as she is probably the person who best combines an incredible intelligence with simple common sense and a care & compassion for all people in a way that makes her PERFECT to be a social worker. I think her having gone through the incredibly difficult situation she has (and continues to go through) with my health has given her a perspective that allows her to see "the other side" in a way that most people simply cannot. I also think she is not some fluffy waste-of-space social worker who is the type to say "now point to the picture of the face that is how your are feeling on the inside?" In my opinion a social worker has to be able to be compassionate while not talking down to their patient or speaking to them in a condescending manner. Nicole has all of these skills and talents in one package... and she's managed to push through and get her schooling done up to this point all while taking good care of me and dealing with the stress of our situation. She might tell you that she doesn't do much for me. Either she's a liar, or she doesn't realize how much she does for me. Anyone who knows me knows all of the medical research and dietary investigations have been done by one "Nicole O'Leary-Sontag". She also does the most important thing in the world for me. She offers me the most beautiful face in the world to wake up to each and every morning. If that isn't enough of a reason to keep the whole "living" thing going, I don't know what is!
In reality we do struggle with topics ranging from "Will we ever have kids?" (with the hidden question being "What happens if we do and [I] am no longer here to help raise those kids?"), or "Where will we be living in a year from now?" (with the hidden questions of "Will I still be here in a year?" and "Will we be able to financially afford to move out into a house?" lurking in the background). So Nicole & I continue to do the only thing we can (and know how)... take it all day-by-day. That sometimes means taking it "3 month period-by-3 month period" oddly enough as that is the interval between my MRI scans. My MRI's are the equivalent of a high school report card you only get so often, and in between which you have no idea how you are doing. So maybe they're more like working for a company that doesn't do nearly enough performance appraisals? Anyhow, my next MRI is scheduled for March 28th, 2014 (Get used to writing that "14" now eh?!)
Oh, and I still LOVE LIFE, LOVE MY WIFE, LOVE WORDS THAT RHYME WITH STRIFE, and that's about as far as I can drag that one out. A special thanks tonight to my lovely wife Nicole, for letting me abandon her completely for the last few hours so that I may write this rambling, non-sensical blog post. The fact that it makes no sense should assure you that I am completely my normal self! There was a second theme planned for tonight's blog post... "SEARS SUCKS!!!" Unfortunately I have wasted all of my time talking about myself. Who wants to read about that? Well, I guess you didn't find it all that bad as you're still reading :)
Stay tuned the next time I waste your time when I recount my many unfortunate experiences dealing with Sears... [to be continued]...
--
Tom
PS: It's late and I'm tired, so as per usual I will not be proofreading this entry. Have at it Luke!!! :)
Monday, December 30, 2013
Thursday, September 19, 2013
In my day...
I think it is about time my generation create their own version of the "both ways up hill in the snow" story our grandparents love to tell us so much. It may be a bit premature, but then again technology is advancing at a rate unseen in the past so I think it is only fitting that such stories keep pace.
You know, in my day we didn't have this thing you call Facebook! If we wanted to talk to a friend we actually had to call them up! How did we do this?
FIRST of all we didn't have iPhones or even phones that had "apps"! The closest thing we had were 'calculator', 'notes', or 'world clock'... and THOSE WERE THE LUCKY KIDS!!! If you wanted to check the latest sports score you had to go home to use the internet... where your family owned only ONE computer, and you had to share it with ALL OF YOUR SIBLINGS... and the internet speed was measured in Kbps! At 14.4 Kbps that meant you truly understood the difference between a JPG and a GIF image file! ASK SOMEONE MY AGE TO EXPLAIN IT TO YOU!!! We had never heard of "Hi-Def". We were happy just to have "Def". If you ever got disconnected from the Internet (which happened a lot) you had to dial back in! Yes I said DIAL... that's how the internet used to work... using your home phone line (phones used to be a device located in one fixed location and shared by all members of a single family).
Picture this: you're talking with people and a question comes up that none of you have the answer to ("Who was it that played with Kevin Bacon in that movie with those things that lived underground?") In my day... YOU JUST HAD TO SETTLE FOR NOT KNOWING!!! The only solution was to find someone who had actually seen that movie and ask them (and hope they actually remembered). This is how knowledge was passed from generation to generation in my day.
SECONDLY not all of us even HAD cell phones! They weren't some God given right like air to breathe or food to eat! If you were lucky enough to have a cell phone you certainly didn't have one before the age of 18. Back in MY DAY my first phone was a Motorola StarTAC (See below).
Its features included an LED display, flip action, an extendible antenna (for connecting to that 0G network), and was one of the first cell phones that could fit in your pocket! How lucky was I? Notice how the display had TWO full rows? Both of which were 7 digits in length? Manitoba only had one area code back in my day so the 204 wasn't something we had to dial. We also didn't have to worry about how much "data" we had used... because there was no such thing as "data"! The phone's primary (and virtually only) feature was to call other people. Weird right? For those of us not lucky enough to have a phone we had to TALK to one another FACE TO FACE. Do not get this confused with "FACE TIME". It was like that, but without the iPhone. Imagine using Face Time, but then putting your iPhone behind your back and still being able to see the other person because they were in the same room as you.
This lead to all kinds of awkwardness in life (as I'm sure you could imagine). If you were invited to a party you had to tell the person you were not going to be there (or lie about it). Ultimately this would mean future awkwardness when you encountered the person again... which of course was bound to happen given the frequency with which we found ourselves in social situations. To "unfriend" someone you had two options. #1) Suck it up, and tell them "I don't want to be your friend anymore." It might hurt, but the other person knew the truth immediately. #2) Ignore the other person for the rest of your life. This seemed easier but actually took more work in the long run. If the other person was the type who "couldn't take a hint" they might persist in wanting to speak to you... following you around constantly until they had some sort of answer from you as to why you were ignoring them. It could get kind of ugly, and just sad to be honest.
THIRDLY if you wanted to share a photo with someone you had to start way back at actually getting the photo developed. Confused? Well back in my day our phones couldn't take pictures (as you might have gathered from the above). In fact, the concept of "digital photography" hadn't yet made its way into consumers hands (for anything near an affordable price). This meant photos had to be taken whereby the photographer had NO IDEA if the picture actually turned out after taking it! You know all of those blurry shots you take with your iPhone now but delete right away? You had to get those all developed and they all cost you money! And most rolls of film only held 24 photos (36 if you paid more) and often you had to wait until the next day to pick them up! THE NEXT DAY!!! Then (and only then) could you share them with your friends by physically bringing one and show it to them. You would have to have more than one copy printed if you wanted to leave a copy with more than one friend. You couldn't "tag" yourself in a friend's photo. You could only point at a blurry person in the background and say "Hey, I think that's me!"
Okay, okay, I know some of you smarter kids out there are doing the math and realizing I was still in school when Facebook became cool. Let me assure you this was a slow process. I was first on something called "MySpace". It was like Facebook but totally lame. Your first "friend" was a guy named "Tom" who it turns out was the dude who created MySpace. My guess is he didn't have many real friends and thus created a social network that forced all users to have him as a friend, thus giving him ultimate bragging rights and a thin sense of self worth. It's like if you joined Facebook to find you had only one friend named "Mark" [Zuckerberg]. Now if your name was Mark and you joined Facebook to see you already had one friends named "Mark" you might freak out right? Now imagine Tom joins MySpace and immediately assumes his account has been hacked and that somehow someone uploaded a picture of someone else and set it as his own profile pic (ya, that happened). Anyways, ultimately and reluctantly I joined the "Facebook" (who I believe I have Tory to thank... but I can tell that story another day). Let me tell you though, that back in my day Facebook forced you to start each status line update with the words "[Your Name] is..." meaning you'd have to do mental gymnastics to form a grammatically correct sentence for anything you might say that would otherwise not begin in the form "Thomas Sontag is _________". One option was to ignore the laws of the English language and have a status read "Thomas Sontag is went to the zoo yesterday". This might catch the attention of a 'Luke Vandenberg' however, so it was generally best avoided. Would you even believe me if I told you Facebook used to limit you to a status line update of only 160 characters? When this was upped to 420 (and the forced "is..." was dropped) we thought it was a Facebook miracle! Now we could not only tell our friends that we were "at the mall", but actually which specific mall (and just maybe there'd be room for us to say which specific store in that mall!) Keep in mind this made us excited because there was no such thing as FourSquare yet, and Facebook didn't allow you to "check in" to places until much later.
Sounds like our lives pretty much sucked eh? Well maybe we had it better than you think? We could lie on our resume like nobody's business as there was no online account to disprove all of our false statements. We had human interaction and got healthy Vitamin C from the sunlight (what you see when you look outside). Sure you didn't have access to every fact on earth at the touch of a virtual button, but you could lie about stuff and so long as you sounded confident enough, people believed you! I think what I'm saying is the past was great for liars and cheats. So maybe things are better off now. I'm sure there's an answer on Wikipedia you can find, or just ask Siri... she sure seems to know a lot more than I do. One thing I do want to know... WHERE ON EARTH ARE OUR HOVER CARS!?!?!?! I realize due to my seizures I wouldn't be able to drive (fly?) one anyways, but I still think they'd be cool!
Oh, PS: I'm feeling great (having just gotten over a bit of a chest cold / cough / infection thing) and having had my last MRI on the 11th of September, I'm expecting nothing but the best results when I go for my appointment tomorrow, (lest I figure the terrorists had something to do with it). Nicole continues to keep me alive (lately with 100% organic homemade smoothies) and work continues to go well for me!
Cheers eh?
--
Tom
PS#2: You might think that on the eve of such a significant day tomorrow I might write a much more serious blog. If you thought that, you don't know me :)
You know, in my day we didn't have this thing you call Facebook! If we wanted to talk to a friend we actually had to call them up! How did we do this?
FIRST of all we didn't have iPhones or even phones that had "apps"! The closest thing we had were 'calculator', 'notes', or 'world clock'... and THOSE WERE THE LUCKY KIDS!!! If you wanted to check the latest sports score you had to go home to use the internet... where your family owned only ONE computer, and you had to share it with ALL OF YOUR SIBLINGS... and the internet speed was measured in Kbps! At 14.4 Kbps that meant you truly understood the difference between a JPG and a GIF image file! ASK SOMEONE MY AGE TO EXPLAIN IT TO YOU!!! We had never heard of "Hi-Def". We were happy just to have "Def". If you ever got disconnected from the Internet (which happened a lot) you had to dial back in! Yes I said DIAL... that's how the internet used to work... using your home phone line (phones used to be a device located in one fixed location and shared by all members of a single family).
Picture this: you're talking with people and a question comes up that none of you have the answer to ("Who was it that played with Kevin Bacon in that movie with those things that lived underground?") In my day... YOU JUST HAD TO SETTLE FOR NOT KNOWING!!! The only solution was to find someone who had actually seen that movie and ask them (and hope they actually remembered). This is how knowledge was passed from generation to generation in my day.
SECONDLY not all of us even HAD cell phones! They weren't some God given right like air to breathe or food to eat! If you were lucky enough to have a cell phone you certainly didn't have one before the age of 18. Back in MY DAY my first phone was a Motorola StarTAC (See below).
Its features included an LED display, flip action, an extendible antenna (for connecting to that 0G network), and was one of the first cell phones that could fit in your pocket! How lucky was I? Notice how the display had TWO full rows? Both of which were 7 digits in length? Manitoba only had one area code back in my day so the 204 wasn't something we had to dial. We also didn't have to worry about how much "data" we had used... because there was no such thing as "data"! The phone's primary (and virtually only) feature was to call other people. Weird right? For those of us not lucky enough to have a phone we had to TALK to one another FACE TO FACE. Do not get this confused with "FACE TIME". It was like that, but without the iPhone. Imagine using Face Time, but then putting your iPhone behind your back and still being able to see the other person because they were in the same room as you.
This lead to all kinds of awkwardness in life (as I'm sure you could imagine). If you were invited to a party you had to tell the person you were not going to be there (or lie about it). Ultimately this would mean future awkwardness when you encountered the person again... which of course was bound to happen given the frequency with which we found ourselves in social situations. To "unfriend" someone you had two options. #1) Suck it up, and tell them "I don't want to be your friend anymore." It might hurt, but the other person knew the truth immediately. #2) Ignore the other person for the rest of your life. This seemed easier but actually took more work in the long run. If the other person was the type who "couldn't take a hint" they might persist in wanting to speak to you... following you around constantly until they had some sort of answer from you as to why you were ignoring them. It could get kind of ugly, and just sad to be honest.
THIRDLY if you wanted to share a photo with someone you had to start way back at actually getting the photo developed. Confused? Well back in my day our phones couldn't take pictures (as you might have gathered from the above). In fact, the concept of "digital photography" hadn't yet made its way into consumers hands (for anything near an affordable price). This meant photos had to be taken whereby the photographer had NO IDEA if the picture actually turned out after taking it! You know all of those blurry shots you take with your iPhone now but delete right away? You had to get those all developed and they all cost you money! And most rolls of film only held 24 photos (36 if you paid more) and often you had to wait until the next day to pick them up! THE NEXT DAY!!! Then (and only then) could you share them with your friends by physically bringing one and show it to them. You would have to have more than one copy printed if you wanted to leave a copy with more than one friend. You couldn't "tag" yourself in a friend's photo. You could only point at a blurry person in the background and say "Hey, I think that's me!"Okay, okay, I know some of you smarter kids out there are doing the math and realizing I was still in school when Facebook became cool. Let me assure you this was a slow process. I was first on something called "MySpace". It was like Facebook but totally lame. Your first "friend" was a guy named "Tom" who it turns out was the dude who created MySpace. My guess is he didn't have many real friends and thus created a social network that forced all users to have him as a friend, thus giving him ultimate bragging rights and a thin sense of self worth. It's like if you joined Facebook to find you had only one friend named "Mark" [Zuckerberg]. Now if your name was Mark and you joined Facebook to see you already had one friends named "Mark" you might freak out right? Now imagine Tom joins MySpace and immediately assumes his account has been hacked and that somehow someone uploaded a picture of someone else and set it as his own profile pic (ya, that happened). Anyways, ultimately and reluctantly I joined the "Facebook" (who I believe I have Tory to thank... but I can tell that story another day). Let me tell you though, that back in my day Facebook forced you to start each status line update with the words "[Your Name] is..." meaning you'd have to do mental gymnastics to form a grammatically correct sentence for anything you might say that would otherwise not begin in the form "Thomas Sontag is _________". One option was to ignore the laws of the English language and have a status read "Thomas Sontag is went to the zoo yesterday". This might catch the attention of a 'Luke Vandenberg' however, so it was generally best avoided. Would you even believe me if I told you Facebook used to limit you to a status line update of only 160 characters? When this was upped to 420 (and the forced "is..." was dropped) we thought it was a Facebook miracle! Now we could not only tell our friends that we were "at the mall", but actually which specific mall (and just maybe there'd be room for us to say which specific store in that mall!) Keep in mind this made us excited because there was no such thing as FourSquare yet, and Facebook didn't allow you to "check in" to places until much later.
Sounds like our lives pretty much sucked eh? Well maybe we had it better than you think? We could lie on our resume like nobody's business as there was no online account to disprove all of our false statements. We had human interaction and got healthy Vitamin C from the sunlight (what you see when you look outside). Sure you didn't have access to every fact on earth at the touch of a virtual button, but you could lie about stuff and so long as you sounded confident enough, people believed you! I think what I'm saying is the past was great for liars and cheats. So maybe things are better off now. I'm sure there's an answer on Wikipedia you can find, or just ask Siri... she sure seems to know a lot more than I do. One thing I do want to know... WHERE ON EARTH ARE OUR HOVER CARS!?!?!?! I realize due to my seizures I wouldn't be able to drive (fly?) one anyways, but I still think they'd be cool!
Oh, PS: I'm feeling great (having just gotten over a bit of a chest cold / cough / infection thing) and having had my last MRI on the 11th of September, I'm expecting nothing but the best results when I go for my appointment tomorrow, (lest I figure the terrorists had something to do with it). Nicole continues to keep me alive (lately with 100% organic homemade smoothies) and work continues to go well for me!
Cheers eh?
--
Tom
PS#2: You might think that on the eve of such a significant day tomorrow I might write a much more serious blog. If you thought that, you don't know me :)
Wednesday, July 17, 2013
Scottish Bagpipes?
I'm weird. We all knew that already though, didn't we? I mention this only to give a bit of background as to why I might be writing this blog update with "Scotland the Brave: The Best Of Scottish Pipes & Drums" blaring out my the speakers from iTunes on my iMac.
I bought the CD from one of those CD Sampler racks in a Shoppers Drug Mart back before the became part of the Loblaws Empire (think Star Wars Stormtroopers Death March). Nicole shook her head, but allowed the purchase to occur, which is reason #862 why I love her so very very much. Did I mention it is a 3 disc set? Or maybe it was from Costco? I love Costco! Seriously. Costco kicks Shoppers Drug Mart's {cough} behind {cough}. I must write a family friendly blog for those young ones who follow my writing... lest they find my writing to be anything less than the most eloquent prose on the interwebs (or "Googles" as a fictitious grandparent might say).
Did I mention I was weird? So, on to the update. ME!?!? I'm great, thanks for asking! How are you?
I'll take your silence to imply you are doing quite well. I'm glad to hear it! It's been great talking about you, but this blog is called Tom's Thoughts so back to me.
Tom's Thought #222: Typing can be done quickly when listening to fast tempo scottish bagpipe tunes :)
Seriously though... about that whole cancer / tumour thing. It's still there, but it isn't getting bigger. At least I think that is what...
...means. I didn't take medicalology in school, and so I'm only combining common sense with what my nurse told me, but the "no new enhancing lesions", "No hydrocephalus", and "shows some reduction" all sound good! I do not believe the reduction of "plaque-like enchangement" means the tumour itself is actually getting smaller (though I'd love it if that were true), but all-in-all I'll take no growth of the tumour any day!!!
How do I feel? A bit squishy, but that's mostly due to the combination of flesh and muscular mass that I as a human being am primarily made of. Beneath that I feel hard and very skeletal. Oh, I see... you meant health wise. My apologies. I feel "Grrrrrrrrreeeeeaaat!!!" (to borrow a line from that corporately trademarked animated tiger). No headaches, no dizziness, no loss of balance, no bouts of unconsciousness... essentially nothing even close to any of the times I may have overindulged at the bar. This is not to say I ever did overindulge in a night out on the town with a couple of good mates / top lads, simply to say I know what that would have felt like should have done so. Yes, that is what I meant. {Cough} Drinking is bad kids.* Stay in school, Don't do drugs**. Only You Can Prevent forest fires***. Keep fit and have fun****. You gotta play it safe around electricity!*****
*Me
**Mr. T
***Smokey the Bear
****Hal Johnson and Joanne McLeod
*****Louie the Lightning Bug
In other good news I have not experienced a seizure in over three months! [quickly knocks on wood] So that's cool. It means I'm only 3/4 of a year away from being able to drive again! Driving is cool. I like driving. I attribute my lack of seizures to my being awesome (obviously), but also upon my being on a whack of meds to prevent them from occurring. One particular medication I'm on is called Valproic Acid. While Wikipedia calls the drug "an acidic chemical compound, [...] use[d] as an anticonvulsant and mood-stabilizing drug, primarily in the treatment of epilepsy[...]" I simply call it "those massive yet magical orange pills I take three times a day to keep the shakes away".
SIDE NOTE: 30 minute of Scottish Bagpipes and still going strong!!! I feel like I'm in the Highlands! :)
I'm now up to 3,000 mg of the pills per day, which seems to be doing the trick, despite putting me at a "toxic" level of the drug in my system. It's funny how these things work. Doctors define some arbitrary level as being "safe" anything above or below a certain level is deemed "toxic" or "unsafe" yet here I am experiencing none of the side effects that are associated with a so-called 'toxic' level of the drug in my system. Granted this is only as measured in my most recent blood test, which could be biased based upon when I took my pills relative to the blood test, how much food I had in my body, etc. My neurologist explained that while having a set of numbers to compare to helps doctors keep most people in line with what is considered safe, some people can exist well outside this range while not experiencing any problems. I'm lucky to be one of such people it would seem. Thus my recent bout of seizurelessness! So seizures being non existent plus tumour not growing = "none too shabby". It's just great getting to live a stress free life not worrying about a single thing. Oh wait, that's not what I do at all...
Stress is something that must simply be managed. I try to put my stress in any containers we put in the recycling. That way it is taken out of the apartment at least once a week, and can be sent to a facility where it can be combined with other people's stress and reused... saving the planet one panic attack at a time! (Did I mention I was weird?) My sarcasm is meant to highlight the fact that great results do not take away from the reality that is my life. This is not to say "poor me" or expect / desire sympathy. I don't like sympathy and I don't want it. I don't live my life for any other reason than "because I want to". I rather enjoy my life, despite its crazy roller coaster ups & downs. Roller coasters are terrifying and I would never get on one voluntarily (short of a million dollar pay off), however when you wake up and find yourself in the front seat of train-like object heading full speed down a set of tracks... it's nice to know you have someone in the seat next to you holding your hand along the way. I could never do any of this without Nicole. If any of you get tired of me saying this STOP READING MY BLOG!!! This blog is about my life and she is my wife, thus she is 99% of my life. She is the 99% awesomeness that makes up for the 1% crappiness that forms a mass of cells in my "right high frontal lobe". I love you so much Nicole.
Outside of medical news, life goes on. My Grandma (who is the best Grandma in the world... sorry to break it to those of you who thought you might have had the world's best Grandma... you don't... unless you are one of my cousins) recently underwent surgery to remove a cancerous tumour in her colon. This makes her only the 6th member in my extended family to experience a fight with cancer. Luckily her operation went well (considering she is an 85 year old woman who until last month was still working 6 days a week), and she is now out of the hospital recovering at home. She is an incredible person and a source of inspiration in my life. I look up to her for her strength, love, set of moral values, strong sense of family, and so much more. My thoughts are with her as she goes through this less than pleasant experience (though I know she'd call me silly and assure me she is still praying for me every chance she gets). I love you so much Grandma.
I'm now listening to "oldies music" that Nicole let me purchase. This one was definitely purchased from Shoppers Drug Mart! I think I got this one confused with the Bagpipes CD. "Rock Around The Clock: Early Rock & Roll" Did I ever mention how much I love music? I think music is part of my therapy. Music calms me down if ever I need to be calmed. It energizes me if ever I need to go for a 5K run. It makes me happy if ever I am feeling down. It can also make me cry if I feel like having a good cry. Nicole got me an iPod Nano for my birthday and it is like the best gift ever! Every song I could want at my fingertips every morning on the bus ride to work? If that doesn't put you in the best mood ever, I don't know what will.
At this point in my blog I like to thank those who have a marathon runner's stamina and simultaneously apologize to them for the rambling nonsensical nature of my writing. They say "do what you do best" and... well, here we are. I'm loving my employment with WOW! Hospitality Concepts. Just to plug the company while I can, we operate 7 (soon to be 8) concepts in Winnipeg. An all-star list of restaurants including 529 Wellington Steakhouse, Terrace in the Park, Peasant Cookery, Los Chicos Restaurante Y Cantina & Finn's Pub and Muddy Waters Sports Ribs & Wings at the Forks. We also have Celebrations Dinner Theatre, which I recommend to any "Friends" fan as the current show is "Best of Friends Reunion". The 8th to be open late 2013 (Late August? Early September?) is "Food Evolution" to open in the Peguis Pavilion within Kildonan Park. How's that for shameless self promotion! I work out of the head office as the guy who looks after the IT & Social Media. Check out our many concept's Facebook Pages and click like to make it seem like I'm doing a good job and simultaneously increase my self-esteem! Or you could visit "http://tinyurl.com/wowmail-signup" and sign up for the company's email blasts (of which I am the "editor/writer"). Or not.
Now that I'm done whoring myself out for my place of employment. Oh right... the kids! Sorry children. Don't read that last sentence. Just pretend I had said "shamelessly selling myself out". Yes, let's all just go with that. IN-BLOG-UPDATE: I'm now listening to "Jessie's Girl" as "NOW 1980's" has entered my playlist. I can't wait until track 17 (Rapper's Delight)!
Other stuff: How are other people? Doing quite well I think/hope/assume! Close friend of Nicole & I, Shauna (the one allergic to everything but who has two of the cutest kids in the world... and now one of the cutest fetuses in the world) is due to have a baby girl in the weeks to come. I say "weeks" because I forget the actual due date. Meanwhile other good friends Mark & Steph (aka: S&M Inc... it's not what you think) have a beautiful baby girl who is approaching her first birthday! Avery Nicole Leonhart has the ability to melt the hearts of both Nicole & I with a single smile. I can't understand how Mark & Steph have managed to avoid sustaining significant damage to their hearts due to overwhelming happy emotions over the last year. We also look forward to the wedding of two very very very funny, good looking, intelligent, bipedal carbon-based organisms. You guessed it! I'm referring to Karen & Nelson! FYI Marriage is awesome! You never fight! You never get even the slightest bit upset by another pair of socks found on the bedroom or living room floor just as she never finds your general inattentive nature or inability to cook even the most basic of meals annoying at all! We love all of you guys. Not in a creepy hippy commune love way mind you. That would be wrong.
Am I still blogging? Turns out I am! I should check on my wife. She hasn't called to make sure I'm still breathing in the last few hours. I usually get a "Are you okay?" once every 20 minutes. I'll be right back... Yep! As I suspected, fast asleep (and looking quite cute too I must say). I checked to make sure she was breathing as to ensure her motionless nature was not misinterpreted leading to an unfortunate late night ambulance ride for all the wrong reasons. I should wrap things up soon though, as the next album up on my iTunes playlist is "Once Upon a Christmas" featuring Kenny Rogers & Dolly Parton. My music tastes are eclectic okay!!! Back story on that one is that my Grandma always played that CD (which I think might have been a record back then*) when I was growing up. At Christmas time. I felt I should add that just in case someone was like "That's odd that his Grandma would have played a Christmas album during his entire childhood!" She only played it at Christmas, and I loved it! I saw it at the checkout of a Wal-Mart one day (it was one of those spontaneous 'checkout buys' for $5.00) so I said "HECK YES!"
*NOTE to the children: A record was like a big black CD that used a needle instead of a laser. That's how old I am.
Well, I should wind things up now. I'm on track 16 ("Rebel Yell") so if timed correctly, I can finish this blog entry as "Rapper's Delight" wraps up (PUN INTENDED!!!) My next MRI is on September 11th, because they felt facing the most aggressive form of brain cancer wasn't enough of a challenge... I clearly needed to have a scan on the date associated with the greatest tragedy of the past several decades. Thanks HSC!!!
Fin
I bought the CD from one of those CD Sampler racks in a Shoppers Drug Mart back before the became part of the Loblaws Empire (think Star Wars Stormtroopers Death March). Nicole shook her head, but allowed the purchase to occur, which is reason #862 why I love her so very very much. Did I mention it is a 3 disc set? Or maybe it was from Costco? I love Costco! Seriously. Costco kicks Shoppers Drug Mart's {cough} behind {cough}. I must write a family friendly blog for those young ones who follow my writing... lest they find my writing to be anything less than the most eloquent prose on the interwebs (or "Googles" as a fictitious grandparent might say).
Did I mention I was weird? So, on to the update. ME!?!? I'm great, thanks for asking! How are you?
I'll take your silence to imply you are doing quite well. I'm glad to hear it! It's been great talking about you, but this blog is called Tom's Thoughts so back to me.
Tom's Thought #222: Typing can be done quickly when listening to fast tempo scottish bagpipe tunes :)
Seriously though... about that whole cancer / tumour thing. It's still there, but it isn't getting bigger. At least I think that is what...
"The surgical cavity with hemosiderin staining in the right high frontal lobe with surrounding residual T2/FLAIR hyperintensity extending into the anterior cingulate gyrus is again identified. The previously identified plaque-like enhancement in the posterolateral aspect of the surgical cavity shows some reduction. No new enhancing lesions are identified. No hydrocephalus.
IMPRESSION: No interval change is identified in the surgical cavity and the surrounding tumour bed since the previous MRI studies from March 2013."
...means. I didn't take medicalology in school, and so I'm only combining common sense with what my nurse told me, but the "no new enhancing lesions", "No hydrocephalus", and "shows some reduction" all sound good! I do not believe the reduction of "plaque-like enchangement" means the tumour itself is actually getting smaller (though I'd love it if that were true), but all-in-all I'll take no growth of the tumour any day!!!
How do I feel? A bit squishy, but that's mostly due to the combination of flesh and muscular mass that I as a human being am primarily made of. Beneath that I feel hard and very skeletal. Oh, I see... you meant health wise. My apologies. I feel "Grrrrrrrrreeeeeaaat!!!" (to borrow a line from that corporately trademarked animated tiger). No headaches, no dizziness, no loss of balance, no bouts of unconsciousness... essentially nothing even close to any of the times I may have overindulged at the bar. This is not to say I ever did overindulge in a night out on the town with a couple of good mates / top lads, simply to say I know what that would have felt like should have done so. Yes, that is what I meant. {Cough} Drinking is bad kids.* Stay in school, Don't do drugs**. Only You Can Prevent forest fires***. Keep fit and have fun****. You gotta play it safe around electricity!*****
*Me
**Mr. T
***Smokey the Bear
****Hal Johnson and Joanne McLeod
*****Louie the Lightning Bug
In other good news I have not experienced a seizure in over three months! [quickly knocks on wood] So that's cool. It means I'm only 3/4 of a year away from being able to drive again! Driving is cool. I like driving. I attribute my lack of seizures to my being awesome (obviously), but also upon my being on a whack of meds to prevent them from occurring. One particular medication I'm on is called Valproic Acid. While Wikipedia calls the drug "an acidic chemical compound, [...] use[d] as an anticonvulsant and mood-stabilizing drug, primarily in the treatment of epilepsy[...]" I simply call it "those massive yet magical orange pills I take three times a day to keep the shakes away".
SIDE NOTE: 30 minute of Scottish Bagpipes and still going strong!!! I feel like I'm in the Highlands! :)
I'm now up to 3,000 mg of the pills per day, which seems to be doing the trick, despite putting me at a "toxic" level of the drug in my system. It's funny how these things work. Doctors define some arbitrary level as being "safe" anything above or below a certain level is deemed "toxic" or "unsafe" yet here I am experiencing none of the side effects that are associated with a so-called 'toxic' level of the drug in my system. Granted this is only as measured in my most recent blood test, which could be biased based upon when I took my pills relative to the blood test, how much food I had in my body, etc. My neurologist explained that while having a set of numbers to compare to helps doctors keep most people in line with what is considered safe, some people can exist well outside this range while not experiencing any problems. I'm lucky to be one of such people it would seem. Thus my recent bout of seizurelessness! So seizures being non existent plus tumour not growing = "none too shabby". It's just great getting to live a stress free life not worrying about a single thing. Oh wait, that's not what I do at all...
Stress is something that must simply be managed. I try to put my stress in any containers we put in the recycling. That way it is taken out of the apartment at least once a week, and can be sent to a facility where it can be combined with other people's stress and reused... saving the planet one panic attack at a time! (Did I mention I was weird?) My sarcasm is meant to highlight the fact that great results do not take away from the reality that is my life. This is not to say "poor me" or expect / desire sympathy. I don't like sympathy and I don't want it. I don't live my life for any other reason than "because I want to". I rather enjoy my life, despite its crazy roller coaster ups & downs. Roller coasters are terrifying and I would never get on one voluntarily (short of a million dollar pay off), however when you wake up and find yourself in the front seat of train-like object heading full speed down a set of tracks... it's nice to know you have someone in the seat next to you holding your hand along the way. I could never do any of this without Nicole. If any of you get tired of me saying this STOP READING MY BLOG!!! This blog is about my life and she is my wife, thus she is 99% of my life. She is the 99% awesomeness that makes up for the 1% crappiness that forms a mass of cells in my "right high frontal lobe". I love you so much Nicole.
Outside of medical news, life goes on. My Grandma (who is the best Grandma in the world... sorry to break it to those of you who thought you might have had the world's best Grandma... you don't... unless you are one of my cousins) recently underwent surgery to remove a cancerous tumour in her colon. This makes her only the 6th member in my extended family to experience a fight with cancer. Luckily her operation went well (considering she is an 85 year old woman who until last month was still working 6 days a week), and she is now out of the hospital recovering at home. She is an incredible person and a source of inspiration in my life. I look up to her for her strength, love, set of moral values, strong sense of family, and so much more. My thoughts are with her as she goes through this less than pleasant experience (though I know she'd call me silly and assure me she is still praying for me every chance she gets). I love you so much Grandma.
I'm now listening to "oldies music" that Nicole let me purchase. This one was definitely purchased from Shoppers Drug Mart! I think I got this one confused with the Bagpipes CD. "Rock Around The Clock: Early Rock & Roll" Did I ever mention how much I love music? I think music is part of my therapy. Music calms me down if ever I need to be calmed. It energizes me if ever I need to go for a 5K run. It makes me happy if ever I am feeling down. It can also make me cry if I feel like having a good cry. Nicole got me an iPod Nano for my birthday and it is like the best gift ever! Every song I could want at my fingertips every morning on the bus ride to work? If that doesn't put you in the best mood ever, I don't know what will.
At this point in my blog I like to thank those who have a marathon runner's stamina and simultaneously apologize to them for the rambling nonsensical nature of my writing. They say "do what you do best" and... well, here we are. I'm loving my employment with WOW! Hospitality Concepts. Just to plug the company while I can, we operate 7 (soon to be 8) concepts in Winnipeg. An all-star list of restaurants including 529 Wellington Steakhouse, Terrace in the Park, Peasant Cookery, Los Chicos Restaurante Y Cantina & Finn's Pub and Muddy Waters Sports Ribs & Wings at the Forks. We also have Celebrations Dinner Theatre, which I recommend to any "Friends" fan as the current show is "Best of Friends Reunion". The 8th to be open late 2013 (Late August? Early September?) is "Food Evolution" to open in the Peguis Pavilion within Kildonan Park. How's that for shameless self promotion! I work out of the head office as the guy who looks after the IT & Social Media. Check out our many concept's Facebook Pages and click like to make it seem like I'm doing a good job and simultaneously increase my self-esteem! Or you could visit "http://tinyurl.com/wowmail-signup" and sign up for the company's email blasts (of which I am the "editor/writer"). Or not.
Now that I'm done whoring myself out for my place of employment. Oh right... the kids! Sorry children. Don't read that last sentence. Just pretend I had said "shamelessly selling myself out". Yes, let's all just go with that. IN-BLOG-UPDATE: I'm now listening to "Jessie's Girl" as "NOW 1980's" has entered my playlist. I can't wait until track 17 (Rapper's Delight)!
Other stuff: How are other people? Doing quite well I think/hope/assume! Close friend of Nicole & I, Shauna (the one allergic to everything but who has two of the cutest kids in the world... and now one of the cutest fetuses in the world) is due to have a baby girl in the weeks to come. I say "weeks" because I forget the actual due date. Meanwhile other good friends Mark & Steph (aka: S&M Inc... it's not what you think) have a beautiful baby girl who is approaching her first birthday! Avery Nicole Leonhart has the ability to melt the hearts of both Nicole & I with a single smile. I can't understand how Mark & Steph have managed to avoid sustaining significant damage to their hearts due to overwhelming happy emotions over the last year. We also look forward to the wedding of two very very very funny, good looking, intelligent, bipedal carbon-based organisms. You guessed it! I'm referring to Karen & Nelson! FYI Marriage is awesome! You never fight! You never get even the slightest bit upset by another pair of socks found on the bedroom or living room floor just as she never finds your general inattentive nature or inability to cook even the most basic of meals annoying at all! We love all of you guys. Not in a creepy hippy commune love way mind you. That would be wrong.
Am I still blogging? Turns out I am! I should check on my wife. She hasn't called to make sure I'm still breathing in the last few hours. I usually get a "Are you okay?" once every 20 minutes. I'll be right back... Yep! As I suspected, fast asleep (and looking quite cute too I must say). I checked to make sure she was breathing as to ensure her motionless nature was not misinterpreted leading to an unfortunate late night ambulance ride for all the wrong reasons. I should wrap things up soon though, as the next album up on my iTunes playlist is "Once Upon a Christmas" featuring Kenny Rogers & Dolly Parton. My music tastes are eclectic okay!!! Back story on that one is that my Grandma always played that CD (which I think might have been a record back then*) when I was growing up. At Christmas time. I felt I should add that just in case someone was like "That's odd that his Grandma would have played a Christmas album during his entire childhood!" She only played it at Christmas, and I loved it! I saw it at the checkout of a Wal-Mart one day (it was one of those spontaneous 'checkout buys' for $5.00) so I said "HECK YES!"
*NOTE to the children: A record was like a big black CD that used a needle instead of a laser. That's how old I am.
Well, I should wind things up now. I'm on track 16 ("Rebel Yell") so if timed correctly, I can finish this blog entry as "Rapper's Delight" wraps up (PUN INTENDED!!!) My next MRI is on September 11th, because they felt facing the most aggressive form of brain cancer wasn't enough of a challenge... I clearly needed to have a scan on the date associated with the greatest tragedy of the past several decades. Thanks HSC!!!
♫"now what you hear is not a test--i'm rappin to the beat and me, the groove, and my friends are gonna try to move your feet"♫Yep, that sound means it's time to call it a night. Thanks for reading all my peeps! I ain't proofreadin' this blog yo 'cause I just decided I'm from da streetz, and we'z don'ts gotsta spells the wordz right! (I think the music might be having an effect on me). STAY IN SCHOOL KIDS!!!
Fin
Thursday, July 11, 2013
Saturday, April 13, 2013
2 years, 4½ months... and counting!
It has been a while since I was first diagnosed with terminal brain cancer. Since my diagnosis I have graduated from University (with a second degree), started a great job working for a great company, travelled to some great places both inside and outside of this great country, married the greatest girl in the world, and had countless other fantastic days along the way. I am always thankful for the time I have and the people I have in my life and continue to be in their debt nearly every single day. You know who you are. Nonetheless there have been tough times along the way. "Tough" might be an understatement, but I'm somewhat known for playing down the bad times and talking up the good.
I find myself at a point in my life where it is harder than ever to look ahead. As much as I've always had the attitude that "things will work out", to believe such blindly and naïvely is neither wise nor healthy. I have to be more on top of things than ever before. No longer being on my chemotherapy treatment means I'm essentially "on my own" fighting something that has a 100% chance of growing back. It is a question of when more than a question of if. That is not to say I have given up in any way mind you. First of all there are the "1-in-a-million scenarios". These are the scenarios that say that just because no one else with my type of tumour has ever had it "go away" before, does not mean that cannot happen one day, and that I will not be the first person that this happens to. It could happen in a number of ways:
Scenario A) I am beamed aboard a spaceship that turns out to be the equivalent of a medical ship and the little green men (and women... let's not be sexist here) cure me of all that ails me.
Scenario B) I drink some odd combination of pop rocks, Dr. Pepper, Maple Syrup, Stem Cells, and HGH (Human Growth Hormone) that overloads my tumour causing it to explode somehow causing no damage to the surrounding brain tissue.
Scenario C) This has all been one crazy bad dream and I wake up from it tomorrow saying "Man, you wouldn't believe the dream I had last night!"
The above three scenarios, while possible, seem unlikely at the current moment in time. What I actually hope will happen is:
Scenario SAS*) I continue to keep my positive optimistic attitude towards life, continue to eat as healthy as I can (meaning no "scenario B" ingredients), and live long enough that some previously undiscovered treatment (if not cure) comes along that radically prolongs the life of GBM patients. If no cure comes along in that time, then just a series of medical developments that continue to improve the outcomes for GBM patients would be fine, ultimately culminating in a cure some decades from now around the time Hover Cars finally come to fruition.
(*Super Awesome Scenario)
I've said it many times many ways: Merry Christmas. No wait... that wasn't it. Though I've said it before it bears repeating, the fact I could die tomorrow doesn't make me theoretically different from anyone else... until you factor in the percentage odds. I rank up there with fairly obese individuals suffering from congestive heart failure. Most people simply face the potential of unobservant bus drivers or falling space debris (which it should be noted... I do too)!
What I would like to discuss however, is how a potentially limited life expectancy can play on your mind and affect how you "plan" for the future. At work I have a binder I keep that essentially outlines how to do many of the tasks I currently do at work. I try to keep myself as replaceable as possible, not wanting to leave my employer in a spot that would leave them hanging should I not be here tomorrow. Most people probably don't think this way. I recall after my Dad passed away how hard it was for my Mom to move on, and how his incredibly disorganized "office" (which was really an old kitchen table in the basement with plywood sheets between milk crates for shelves) made it 10 times harder for her to move on given that it was a several month long process just to sort through the stacks and stacks of paper that, while meaningful to him, meant nothing to any other individual on Earth. Why did he keep that page 7 article from March 28th's Winnipeg Free Press? I have no idea and never will. That example was totally made up by the way. It was true however that he had a box marked "Tom's Mail" that contained over a year's worth of unopened mail addressed to me. Turns out the bank HAD been sending me statements all along!!! But I digress... Having been through that with my Dad and remembering that my siblings and I had to take it upon ourselves to go through much of the "junk" to save my Mom from having to do so was a tough thing to have to do. As such I have tried to keep my office relatively clean (ok, I did say "relatively" didn't I?)... seriously - STOP LAUGHING! Anyways, I have tried to keep a clean and paperless office (hence the several hundred dollar duplex scanner purchase I may have made without my wife's knowledge/approval (good thing she loves me!). I have to live my life hoping for the best but preparing for the worst.
Continuing on this theme the question must be raised "How do I plan to raise a family?" followed by "Can I even plan to raise a family? Would it even be moral?" I don't have the answers to these questions and struggle with them on a daily basis. I see friends beginning to raise families of their own. While it is great and so rewarding to see this happen and be so blessed as to be able to be a part of their families as they grow together, there is always a pain in my heart knowing I am not in a position to enjoy what I can see them enjoying right now. There are many factors that go into a decision of this magnitude. Assuming Nicole and I could have a child at this point in our lives (ignoring my medical treatments, her schooling, and our financial situation) could I justify putting her in a position where she might become a single mother (if I were to even live to see the birth of my own child)? I've already out-lived my life expectancy, so how long would my child live until they were without a father? Is it right to bring a child into the world, knowing you might not be there to teach them right from wrong? To protect them from things in the world that might harm them? To help my wife with what must surely be one of the most difficult challenges one can take upon themselves in their life?
Nicole and I have obviously discussed this. Playing the "what if" game, we've wondered what would happen if we did have a child, but I later had the tumour grow back and required a second surgery. What if that surgery left me with impairments such that I could not raise a child? What if those impairments were severe enough that I required Nicole to be my caregiver? Could she look after her newborn child and husband at the same time? What about the stress she might endure during pregnancy? As it is Nicole suffers more stress on a daily basis than I'm sure most people do in a month. Could she handle the stress of a first pregnancy PLUS the stress of her day-to-day life as it stands now?
Then we have to move on to the same realities every other potential parent/family must face. Can we afford to do this? We don't sleep on a pile of money each night, and while we've been fortunate to have had very generous support from our families, living just the two of us in an apartment is not the same as raising a newborn baby. I've heard they need to eat... DAILY!
Then there is the "can I have children?" question. Turns out I've received a lot of very toxic medication over the past 2+ years (not to mention a lifetime dose of radiation). While I've joked in the past that any baby I had would be green with three arms, medically I think the more likely scenario is that I simply wouldn't be able to have children.
Nicole has reminded me that it is likely too soon to even think about these things as she is still in school and I need to have been off chemo for at least 6 months before I can consider having a child. I'm sitting at 3 or so months off chemo, and Nicole still has a year plus of schooling to go, so perhaps I'll have time to revisit this in a future blog with the ability to live vicariously though our many close friends in the meantime. Being an "Aunty / Uncle" is pretty cool too. We love our non-biological nieces and nephews. A shout-out to Emma, Daniel, Yet-to-be-born (and thus named) Fetus, and of course Avery!
I find myself at a point in my life where it is harder than ever to look ahead. As much as I've always had the attitude that "things will work out", to believe such blindly and naïvely is neither wise nor healthy. I have to be more on top of things than ever before. No longer being on my chemotherapy treatment means I'm essentially "on my own" fighting something that has a 100% chance of growing back. It is a question of when more than a question of if. That is not to say I have given up in any way mind you. First of all there are the "1-in-a-million scenarios". These are the scenarios that say that just because no one else with my type of tumour has ever had it "go away" before, does not mean that cannot happen one day, and that I will not be the first person that this happens to. It could happen in a number of ways:
Scenario A) I am beamed aboard a spaceship that turns out to be the equivalent of a medical ship and the little green men (and women... let's not be sexist here) cure me of all that ails me.
Scenario B) I drink some odd combination of pop rocks, Dr. Pepper, Maple Syrup, Stem Cells, and HGH (Human Growth Hormone) that overloads my tumour causing it to explode somehow causing no damage to the surrounding brain tissue.
Scenario C) This has all been one crazy bad dream and I wake up from it tomorrow saying "Man, you wouldn't believe the dream I had last night!"
The above three scenarios, while possible, seem unlikely at the current moment in time. What I actually hope will happen is:
Scenario SAS*) I continue to keep my positive optimistic attitude towards life, continue to eat as healthy as I can (meaning no "scenario B" ingredients), and live long enough that some previously undiscovered treatment (if not cure) comes along that radically prolongs the life of GBM patients. If no cure comes along in that time, then just a series of medical developments that continue to improve the outcomes for GBM patients would be fine, ultimately culminating in a cure some decades from now around the time Hover Cars finally come to fruition.
(*Super Awesome Scenario)
I've said it many times many ways: Merry Christmas. No wait... that wasn't it. Though I've said it before it bears repeating, the fact I could die tomorrow doesn't make me theoretically different from anyone else... until you factor in the percentage odds. I rank up there with fairly obese individuals suffering from congestive heart failure. Most people simply face the potential of unobservant bus drivers or falling space debris (which it should be noted... I do too)!
What I would like to discuss however, is how a potentially limited life expectancy can play on your mind and affect how you "plan" for the future. At work I have a binder I keep that essentially outlines how to do many of the tasks I currently do at work. I try to keep myself as replaceable as possible, not wanting to leave my employer in a spot that would leave them hanging should I not be here tomorrow. Most people probably don't think this way. I recall after my Dad passed away how hard it was for my Mom to move on, and how his incredibly disorganized "office" (which was really an old kitchen table in the basement with plywood sheets between milk crates for shelves) made it 10 times harder for her to move on given that it was a several month long process just to sort through the stacks and stacks of paper that, while meaningful to him, meant nothing to any other individual on Earth. Why did he keep that page 7 article from March 28th's Winnipeg Free Press? I have no idea and never will. That example was totally made up by the way. It was true however that he had a box marked "Tom's Mail" that contained over a year's worth of unopened mail addressed to me. Turns out the bank HAD been sending me statements all along!!! But I digress... Having been through that with my Dad and remembering that my siblings and I had to take it upon ourselves to go through much of the "junk" to save my Mom from having to do so was a tough thing to have to do. As such I have tried to keep my office relatively clean (ok, I did say "relatively" didn't I?)... seriously - STOP LAUGHING! Anyways, I have tried to keep a clean and paperless office (hence the several hundred dollar duplex scanner purchase I may have made without my wife's knowledge/approval (good thing she loves me!). I have to live my life hoping for the best but preparing for the worst.
Continuing on this theme the question must be raised "How do I plan to raise a family?" followed by "Can I even plan to raise a family? Would it even be moral?" I don't have the answers to these questions and struggle with them on a daily basis. I see friends beginning to raise families of their own. While it is great and so rewarding to see this happen and be so blessed as to be able to be a part of their families as they grow together, there is always a pain in my heart knowing I am not in a position to enjoy what I can see them enjoying right now. There are many factors that go into a decision of this magnitude. Assuming Nicole and I could have a child at this point in our lives (ignoring my medical treatments, her schooling, and our financial situation) could I justify putting her in a position where she might become a single mother (if I were to even live to see the birth of my own child)? I've already out-lived my life expectancy, so how long would my child live until they were without a father? Is it right to bring a child into the world, knowing you might not be there to teach them right from wrong? To protect them from things in the world that might harm them? To help my wife with what must surely be one of the most difficult challenges one can take upon themselves in their life?
Nicole and I have obviously discussed this. Playing the "what if" game, we've wondered what would happen if we did have a child, but I later had the tumour grow back and required a second surgery. What if that surgery left me with impairments such that I could not raise a child? What if those impairments were severe enough that I required Nicole to be my caregiver? Could she look after her newborn child and husband at the same time? What about the stress she might endure during pregnancy? As it is Nicole suffers more stress on a daily basis than I'm sure most people do in a month. Could she handle the stress of a first pregnancy PLUS the stress of her day-to-day life as it stands now?
Then we have to move on to the same realities every other potential parent/family must face. Can we afford to do this? We don't sleep on a pile of money each night, and while we've been fortunate to have had very generous support from our families, living just the two of us in an apartment is not the same as raising a newborn baby. I've heard they need to eat... DAILY!
Then there is the "can I have children?" question. Turns out I've received a lot of very toxic medication over the past 2+ years (not to mention a lifetime dose of radiation). While I've joked in the past that any baby I had would be green with three arms, medically I think the more likely scenario is that I simply wouldn't be able to have children.
Nicole has reminded me that it is likely too soon to even think about these things as she is still in school and I need to have been off chemo for at least 6 months before I can consider having a child. I'm sitting at 3 or so months off chemo, and Nicole still has a year plus of schooling to go, so perhaps I'll have time to revisit this in a future blog with the ability to live vicariously though our many close friends in the meantime. Being an "Aunty / Uncle" is pretty cool too. We love our non-biological nieces and nephews. A shout-out to Emma, Daniel, Yet-to-be-born (and thus named) Fetus, and of course Avery!
Wednesday, April 3, 2013
I just thought of things...
... and now I'm typing them!
In this blog the voice in my head representing the masses shall be represented by fancy brackets like this {}! Sound good? {It sure does Tom!} Get it? I thought so :)
Ok, so I just had a shower {good for you Tom!}. No, that's not the impressive part... I do that several times per week. My shower time is my thinking time. Rather than let those thoughts get washed down the drain, I've decided to get them written into my blog before I forgot what they were. It's more of a "dream journal" than a well thought out essay.
One of my thoughts was about the battle of the "relative" versus the "absolute". We as humans tend to LOVE (and I do mean love) the "absolute". The black & white, the yes & no, the on & off. The reality is that life is full of relatives (and I'm not talking about your in-laws) {no more puns Tom... please?}
People might look at my situation and think of me as being "sick", however the reality is that we are all some level of "sick" on the overall spectrum of health. We all seem to have one health problem or another (some of us many more than others). Some of us simply have more serious health problems than others. The words more or less imply a sort of relativity. How can the seriousness of a health issue truly be diagnosed? I don't think there is a science to it. There are obvious extremes. Cancer is bad. A sore wrist kind of sucks a little. Having cancer and a sore wrist just seems unfair! (My wrists are fine by the way). Even the spectrum of health I have just painted is over simplified. What is health? Physical health? Mental health? Emotional health? Is there a way to measure some overall measure of these attributes, given the complexities of their own unique aspects? I'm not sure there is. {So why are you saying all of this Tom?} I'm saying all of this in part to give the readers of this blog a moments pause to think about the complexity of things in life that we all take for granted. A person's health means nothing compared to some other "standard" level of what we call health. If every person on earth had cells in their body that multiplied uncontrollably causing premature death, would a person with cancer be sick? Or would health merely be redefined to cover the range of all humans (with cancer)... meaning some people would have worse cancers, or perhaps a range of other illnesses that would now define their overall health. Nicole is probably reading this passage right now thinking "Oh my goodness, he's gone post postictal again!" (check out "http://en.wikipedia.org/wiki/Postictal_psychosis" and scroll down to the paragraph that begins "Postictal psychosis (PP)..." to get an idea of what I've gone through before... not fun!)
No worries love... not postical... just regular crazy Tom!
Another part of my relative versus absolute line of thinking brought me to the idea of wealth. We tend to think of "wealth" in strictly monetary terms. In those terms few of us would define ourselves as being "rich". The 80/20 rule (Pareto principle for those who can't let Vilfredo go without his due credit) tells us that approximately 80% of the wealth is earned by 20% of the population. But there is an underlying assumption that "wealth" is an economical term measured in dollars and cents (though no longer pennies in Canada). Wealth can be (and perhaps should be) thought of in different terms on a more regular basis. Economic wealth should not be downplayed for obvious reasons, but each of us should remember to focus on other measurements of wealth, such as how much love and support and love we have in our lives. In that sense, many of us truly are "richer than we think" (Oh Scotiabank... how right you are)! I am working with my wife to find ways to make sure we stay within our means each month financially, but the two of us could not be any richer with all of the loving and supportive people we have in our lives. I like knowing that if we found ourselves with a $0.00 bank balance, we'd still be two of the most wealthy people in the world. Be sure not to lose focus of that way of thinking in your own life. Many a time I've seen people sacrifice one type of wealth in the pursuit of the other. Another observation I've made in my 29+ years (though let's be honest... the first few didn't really count) is that there is a correlation between the two. Seeking the richness for meaningful relationships with friends, family, and a spouse can put you on the path to financial security whereas trying to chase the almighty dollar without good people around you is difficult (if not meaningless).
My thoughts then returned to my line of "absolute versus relative" thinking. I have had the joy and great benefit of taking many psychology courses in my university career (you get to call it a career when you spend nearly a decade there!) which have coloured my view of the world in a unique way. One lesson I learned illustrated the lack of definite categories in life. We were once asked to define "a chair". Seems easy right? {It sure does Tom! Something with four legs that you sit on!} Ok, sounds good, but what about a rocking chair? That doesn't have four legs. And what about a bean bag chair... no legs there! The lesson was that there are exceptions to every rule. Even chairs exist on a spectrum of various properties. In nature we categorize animals into different species using something called taxonomy, and plants into different genuses. We LOVE categories! But again, what the heck is a tomato? Even gender lines are not as clear as we would like. Google "Caster Semenya" for an example of this. Science has shown cases well beyond the scope of XX & XY we like to think of when it comes to gender. How about X, XXX, XXXX, XXXXX, XXY, or even XXXY? These have all been known to occur. It makes one take a seriously look at how we look at the world. Given the known fact gender doesn't always come in two distint categories, it strikes me as close-minded that some individuals think it "unnatural" that two individuals of the same "gender" might happen to love one another as "more than just friends". Why am I saying all of this? Because this blog is called "Tom's thoughts"! I can write whatever I want. If your name is Ted you can have "Ted's Thoughts" and write whatever you would like to write.
Another thing I love reading about is the Theory of Relativity and notions that time itself (one thing almost every human being on Earth holds as an "absolute") is in fact relative. The mind blowing notion that we are all moving at a different speed within the "spacetime continuum". In order to avoid saying things incorrectly I shall copy & paste from the source of all references, Wikipedia: "later experiments revealed that time slows at higher speeds of the reference frame relative to another reference frame" -- (http://en.wikipedia.org/wiki/Spacetime)
If even the speed I am travelling depends on the relative frame of reference, can anything truly be absolute?
When in the hospital some 2+ years ago when I first had my craniotomy (the day that brain doctor drilled into my skull), there were many times (before and after the surgery) I was asked to rate my level of pain. I think the purpose of such could only have been to determine if my own level of pain was higher or lower than what it might have been previously, as my "level 5" may or may not be anywhere close to your "level 5"... or yours... or even YOURS! (I assume I have at least three readers out there).
I think I'm trying to come around to a point I may have made before... MY LIFE IS AWESOME!!!
I had a diagnosis given to me late in 2010 that gave me 3 months (worst case scenario) to 1 year (best case scenario). Admittedly my oncologist had patients live longer than 1 year at that point, though I think he felt the need to give me the reality of my situation without the highly unlikely "super best case scenario" aka: my currently life. I've now lived 2 years past my diagnosis, and 1 year past my "best before date". Not only that, I've suffered very few speed bumps along the way (though Nicole might argue my postical psychosis states and/or "day in a coma" might count as the type of "speed bump" that scratch the bottom of your car when you drive over them). I have a very high quality of life. I'm off my chemo medication (read prior posts for more on that), and only suffer occasional seizures (last one: Sunday March 31, 2013)... though even they are small and 'manageable' rarely requiring hospitalization (in large part because Dr. Nicole sure knows how to take care of me!). This Friday sees Nicole & I at the Health Sciences Centre to get the results of my latest MRI. This is also the very 1st MRI done after being taken fully off my chemo medications. To say we are a tad nervous heading into the appointment would surely be an understatement, but we've learned at this point all we can do is move forward and deal with whatever comes our way.
At the end of the day even if my tumour is growing... I'm still a rich & relatively healthy guy! So how could I complain? After all, I don't have sore wrists!
Cheers all!
--
Tom
In this blog the voice in my head representing the masses shall be represented by fancy brackets like this {}! Sound good? {It sure does Tom!} Get it? I thought so :)
Ok, so I just had a shower {good for you Tom!}. No, that's not the impressive part... I do that several times per week. My shower time is my thinking time. Rather than let those thoughts get washed down the drain, I've decided to get them written into my blog before I forgot what they were. It's more of a "dream journal" than a well thought out essay.
One of my thoughts was about the battle of the "relative" versus the "absolute". We as humans tend to LOVE (and I do mean love) the "absolute". The black & white, the yes & no, the on & off. The reality is that life is full of relatives (and I'm not talking about your in-laws) {no more puns Tom... please?}
People might look at my situation and think of me as being "sick", however the reality is that we are all some level of "sick" on the overall spectrum of health. We all seem to have one health problem or another (some of us many more than others). Some of us simply have more serious health problems than others. The words more or less imply a sort of relativity. How can the seriousness of a health issue truly be diagnosed? I don't think there is a science to it. There are obvious extremes. Cancer is bad. A sore wrist kind of sucks a little. Having cancer and a sore wrist just seems unfair! (My wrists are fine by the way). Even the spectrum of health I have just painted is over simplified. What is health? Physical health? Mental health? Emotional health? Is there a way to measure some overall measure of these attributes, given the complexities of their own unique aspects? I'm not sure there is. {So why are you saying all of this Tom?} I'm saying all of this in part to give the readers of this blog a moments pause to think about the complexity of things in life that we all take for granted. A person's health means nothing compared to some other "standard" level of what we call health. If every person on earth had cells in their body that multiplied uncontrollably causing premature death, would a person with cancer be sick? Or would health merely be redefined to cover the range of all humans (with cancer)... meaning some people would have worse cancers, or perhaps a range of other illnesses that would now define their overall health. Nicole is probably reading this passage right now thinking "Oh my goodness, he's gone post postictal again!" (check out "http://en.wikipedia.org/wiki/Postictal_psychosis" and scroll down to the paragraph that begins "Postictal psychosis (PP)..." to get an idea of what I've gone through before... not fun!)
No worries love... not postical... just regular crazy Tom!
Another part of my relative versus absolute line of thinking brought me to the idea of wealth. We tend to think of "wealth" in strictly monetary terms. In those terms few of us would define ourselves as being "rich". The 80/20 rule (Pareto principle for those who can't let Vilfredo go without his due credit) tells us that approximately 80% of the wealth is earned by 20% of the population. But there is an underlying assumption that "wealth" is an economical term measured in dollars and cents (though no longer pennies in Canada). Wealth can be (and perhaps should be) thought of in different terms on a more regular basis. Economic wealth should not be downplayed for obvious reasons, but each of us should remember to focus on other measurements of wealth, such as how much love and support and love we have in our lives. In that sense, many of us truly are "richer than we think" (Oh Scotiabank... how right you are)! I am working with my wife to find ways to make sure we stay within our means each month financially, but the two of us could not be any richer with all of the loving and supportive people we have in our lives. I like knowing that if we found ourselves with a $0.00 bank balance, we'd still be two of the most wealthy people in the world. Be sure not to lose focus of that way of thinking in your own life. Many a time I've seen people sacrifice one type of wealth in the pursuit of the other. Another observation I've made in my 29+ years (though let's be honest... the first few didn't really count) is that there is a correlation between the two. Seeking the richness for meaningful relationships with friends, family, and a spouse can put you on the path to financial security whereas trying to chase the almighty dollar without good people around you is difficult (if not meaningless).
My thoughts then returned to my line of "absolute versus relative" thinking. I have had the joy and great benefit of taking many psychology courses in my university career (you get to call it a career when you spend nearly a decade there!) which have coloured my view of the world in a unique way. One lesson I learned illustrated the lack of definite categories in life. We were once asked to define "a chair". Seems easy right? {It sure does Tom! Something with four legs that you sit on!} Ok, sounds good, but what about a rocking chair? That doesn't have four legs. And what about a bean bag chair... no legs there! The lesson was that there are exceptions to every rule. Even chairs exist on a spectrum of various properties. In nature we categorize animals into different species using something called taxonomy, and plants into different genuses. We LOVE categories! But again, what the heck is a tomato? Even gender lines are not as clear as we would like. Google "Caster Semenya" for an example of this. Science has shown cases well beyond the scope of XX & XY we like to think of when it comes to gender. How about X, XXX, XXXX, XXXXX, XXY, or even XXXY? These have all been known to occur. It makes one take a seriously look at how we look at the world. Given the known fact gender doesn't always come in two distint categories, it strikes me as close-minded that some individuals think it "unnatural" that two individuals of the same "gender" might happen to love one another as "more than just friends". Why am I saying all of this? Because this blog is called "Tom's thoughts"! I can write whatever I want. If your name is Ted you can have "Ted's Thoughts" and write whatever you would like to write.
Another thing I love reading about is the Theory of Relativity and notions that time itself (one thing almost every human being on Earth holds as an "absolute") is in fact relative. The mind blowing notion that we are all moving at a different speed within the "spacetime continuum". In order to avoid saying things incorrectly I shall copy & paste from the source of all references, Wikipedia: "later experiments revealed that time slows at higher speeds of the reference frame relative to another reference frame" -- (http://en.wikipedia.org/wiki/Spacetime)
If even the speed I am travelling depends on the relative frame of reference, can anything truly be absolute?
When in the hospital some 2+ years ago when I first had my craniotomy (the day that brain doctor drilled into my skull), there were many times (before and after the surgery) I was asked to rate my level of pain. I think the purpose of such could only have been to determine if my own level of pain was higher or lower than what it might have been previously, as my "level 5" may or may not be anywhere close to your "level 5"... or yours... or even YOURS! (I assume I have at least three readers out there).
I think I'm trying to come around to a point I may have made before... MY LIFE IS AWESOME!!!
I had a diagnosis given to me late in 2010 that gave me 3 months (worst case scenario) to 1 year (best case scenario). Admittedly my oncologist had patients live longer than 1 year at that point, though I think he felt the need to give me the reality of my situation without the highly unlikely "super best case scenario" aka: my currently life. I've now lived 2 years past my diagnosis, and 1 year past my "best before date". Not only that, I've suffered very few speed bumps along the way (though Nicole might argue my postical psychosis states and/or "day in a coma" might count as the type of "speed bump" that scratch the bottom of your car when you drive over them). I have a very high quality of life. I'm off my chemo medication (read prior posts for more on that), and only suffer occasional seizures (last one: Sunday March 31, 2013)... though even they are small and 'manageable' rarely requiring hospitalization (in large part because Dr. Nicole sure knows how to take care of me!). This Friday sees Nicole & I at the Health Sciences Centre to get the results of my latest MRI. This is also the very 1st MRI done after being taken fully off my chemo medications. To say we are a tad nervous heading into the appointment would surely be an understatement, but we've learned at this point all we can do is move forward and deal with whatever comes our way.
At the end of the day even if my tumour is growing... I'm still a rich & relatively healthy guy! So how could I complain? After all, I don't have sore wrists!
Cheers all!
--
Tom
Friday, March 22, 2013
I'm BACK!
I'm not sure if I told you I was going... but I did. Nicole and I left for Florida for a week to "relax" in the sun. I use quotation marks as I'm not sure either of us have ever felt so exhausted at any point in the year leading up to our vacation. I called it our "Everything But Disney" trip. We stayed in Orlando (or rather Clermont to be specific). As soon as you say you went to Orlando people say "Oh, so you went to Disney?"! Given I was not:
A) 10 years of age or under, and...
B) Rich
we chose to leave Disney off of our list of "to-do's". Instead we focused on Universal Studios and a few others. Now I must explain something that confused me the entire trip. There are two theme parks that make up Universal Orlando... Islands of Adventure & Universal Studios (can you see where I got confused?). So "Universal Orlando Resort" is the whole shebang, with "Islands of Adventure" and "Universal Studios Florida" being two parks within that overall resort. I'm sure you don't care about that, but it might come in handy should you ever decide to head down to Florida to do your own "EBD trip". Also as part of the "everything but Disney" were Sea World, Aquatica, Wet 'N Wild, and City Walk (technically another part of Universal Orlando Resort). Fans of South Park will appreciate my constant asking for "City Pork" and/or "City Beef" while walking through "City Walk".
The trip can be summed up as follows: Wake up, eat, drive to some attraction or theme park, do stuff, eat, do more stuff, go somewhere else, do more stuff, eat again, go home, pass out due to pure exhaustion. Rinse. Repeat. I don't know there was a day Nicole & I were awake and still in anything other than a dream state by 10:30pm any night of our 7 sleeps in the state designated "FL". Don't think I was out of it due to any of my medications. I don't take those anymore. (okay, I technically still take anti-seizure medication & blood thinners, but nothing related to any kind of cancer treatment). How would I rate the trip? I'd give it an awesome and a half plus a wicked-cool (5/5 for those of you who don't speak "street" like I do).
I sure hope Nicole enjoyed it too because she was with me the whole time. She is magical + wonderful + pixie dust. She planned the whole trip, booked the whole trip, drove the entire time on the trip, forced my lazy behind out of bed each morning, and didn't complain about doing so! I think that (plus the whole being madly in love with her) is why we are soul mates :)
So what else is up with me? A desire for spring. Having come back from Orlando, where people think 14 degrees Celsius is cold (note the lack of a negative sign before the 14), I can say walking around with less of a chill, and less of a fear of slipping and falling is a rather enjoyable! (Bare pavement seems to have a slightly higher coefficient of friction than ice... go figure?)
What else did Nicole & I enjoy on our trip? Lower gas prices, lower everything else prices, a wall of very visible cigarettes in every convenience store (and walk in beer coolers where you can buy a single bottle of beer?!?!?), a gas station that served hoagies fresh to order (seriously... check out wawa.com), a random security check by a Canada Customs Agent (Border Security Dude?). Turns out I should have declared that half-eaten bag of whole unsalted almonds (and that package of Turkey Bacon) on my customs form. The CCA/BSD was cool about it all and didn't fine either of us or throw us in jail (or burn us at the stake circa 17th century witch-related persecution). There are more stories, and as most of you could have guessed much LONGER versions of the above that I can tell you at any time! If you see me, don't hesitate to ask! Just make sure you aren't doing anything for the rest of the day! (This is my method of trying to encourage some sort of social life whereby people feel compelled to seek me out for stories, conversation, and general merriment).
HEALTH CHECK: (No, not this... http://youtu.be/JvQRN5I2Smk) I am healthy! I am also terminally ill. It's called a paradox! Here is the problem with being terminally ill but appearing 100% fine... PEOPLE THINK YOU ARE 100% FINE! Great right? Well, not so much. I have little-to-no deficits from my brain surgery (which I am forever grateful for), and my medications don't cause me any significant side-effects. The only real change to my health has been the seizures I experience every now and then (6-8 weeks apart on average for those who like statistics). People on the bus don't point at me and go "Oh, that dude looks like he has terminal Stage 4 Glioblastoma Multiforme / a malignant brain tumour!" (That would just be weird... not to mention rude). So why is this bad? I think people have a misconception that I'm "over it" or "in remission". My brain tumour is currently stable, which is better than "growing like the American National Debt"! Given I am no longer taking any medications to combat my brain tumour, there is theoretically nothing to prevent its growth/return. Wednesday March 27th I will have an MRI. Friday April 5th I will find out how that MRI went. Until then I assume, as always, that all is well. How? How could I be so sure? So confident? Simple! I have to be! Plus it beats being in a state of total overwhelming panic 24 hours a day. I'm not saying I can simply "choose" to keep calm and carry on (I saw that on a mug once)! I simply keep in the back of my mind the thought that above all people on this planet I have good reason to make the most of every day (and indeed moment). I have this theory that by staying positive and keeping hope & faith that things will work out... or at least marginally increase the odds that they just might!
Nicole described it the other day as a blissful combination of denial and hope. Aside from the fact I'm probably misquoting her, I think she said it marvellously well. You can't always keep the harsh reality of your situation and the forefront of your mind. If you did, you would emotionally melt down quicker than chocolate in a chocolate fountain (mmmm.... chocolate fountain. Those things are so great! You can just stick any food item underneath its chocolatey flow to increase its deliciousness tenfold!) But where was I? Right, harsh reality. You can't focus on it always, but you can't ignore it either. The harsh reality of terminal illness seems to manifest itself in even the simplest and most trivial of ways.
I recently (re)-subscribed to MacLean's Magazine. Of course the more years you subscribe for the lower the price-per-issue works out to be. Normal people would weigh their options and likely go with the three year subscription for pennies per issue. I think "Well, three years is the cheapest per issue... provided I live that long. I don't go so far as to mathematically figure out the exact point where my life expectancy vs. subscription length returns equal value per "year option", but the general gist of such a notion does cross your mind.
I think another point of my daily life involves wanting to prove to others (and likely myself) that I am doing just great. I wan't people to see me at my best. I don't wan't people to feel sorry for me (who does?) so I generally put on a bright happy face for the world to see. I take pride in being able to tell you that 99% percent of the time that is how I feel on the inside. I think what people might miss however is that there is 1% of the time when I'm not feeling that way, and I choose to keep it for those times when no one else is around to see it. The only exception to this is my wife Nicole. She has seen me at my absolute worst to my absolute best. I have no fear in showing her all of me... my bright happy side, and my darker sad side. She is my wife, my life, and my soul-mate who I could not do any of this without. I think people often forget that she is in this boat with me. She might seem bright happy & smiles on the outside, but come home to feel more comfortable to let it all out and not hide the negative feelings from the world and others to see. I think there is a feeling of frustration when people say "You are so strong!" or "I can't believe how well you handle all of this!" You want to reply "But I'm not! And I don't!" Sometimes yes, sometimes it looks like you can handle anything in the wold that comes at you and that you are stronger than all of your life's demons. As you can probably tell I don't know how to put this into words very well. There is a paradoxical feeling of wanting to hide your sadness and self-perceived "weakness" while at the same time not wanting people to think you are as invincible as you look. I'm not sure either Nicole or I have fully come to terms with how to balance this contrast of conflicting feelings. I think we look to each other for help and support. We each have times when it all just becomes too much and there is no more hiding it. Each of us have had what I call "breakdowns" on a regular basis over the past 2+ years. Sometimes it feels good to have one. To get to that helpless feeling and maybe get really angry or frustrated or sad or depressed or all of the above and cry for a good half hour. But you come out of that half an hour recharged and ready to take on life and those same problems with a renewed sense of purpose.
I'm rambling now. It is once again my bedtime, so I'll leave it at this (I started this post over a week ago). I shall return to write more, as for some reason I can't quite figure out, people seem to like reading my endless non-coherent words arranged into sentences on their computer screens. Do I make sense? Not sure I do. Does the government make cents? Not anymore. Did that fit in to this blog at all? Maybe. I do love a good pun. Cheers!
--
Tom
A) 10 years of age or under, and...
B) Rich
we chose to leave Disney off of our list of "to-do's". Instead we focused on Universal Studios and a few others. Now I must explain something that confused me the entire trip. There are two theme parks that make up Universal Orlando... Islands of Adventure & Universal Studios (can you see where I got confused?). So "Universal Orlando Resort" is the whole shebang, with "Islands of Adventure" and "Universal Studios Florida" being two parks within that overall resort. I'm sure you don't care about that, but it might come in handy should you ever decide to head down to Florida to do your own "EBD trip". Also as part of the "everything but Disney" were Sea World, Aquatica, Wet 'N Wild, and City Walk (technically another part of Universal Orlando Resort). Fans of South Park will appreciate my constant asking for "City Pork" and/or "City Beef" while walking through "City Walk".
The trip can be summed up as follows: Wake up, eat, drive to some attraction or theme park, do stuff, eat, do more stuff, go somewhere else, do more stuff, eat again, go home, pass out due to pure exhaustion. Rinse. Repeat. I don't know there was a day Nicole & I were awake and still in anything other than a dream state by 10:30pm any night of our 7 sleeps in the state designated "FL". Don't think I was out of it due to any of my medications. I don't take those anymore. (okay, I technically still take anti-seizure medication & blood thinners, but nothing related to any kind of cancer treatment). How would I rate the trip? I'd give it an awesome and a half plus a wicked-cool (5/5 for those of you who don't speak "street" like I do).
I sure hope Nicole enjoyed it too because she was with me the whole time. She is magical + wonderful + pixie dust. She planned the whole trip, booked the whole trip, drove the entire time on the trip, forced my lazy behind out of bed each morning, and didn't complain about doing so! I think that (plus the whole being madly in love with her) is why we are soul mates :)
So what else is up with me? A desire for spring. Having come back from Orlando, where people think 14 degrees Celsius is cold (note the lack of a negative sign before the 14), I can say walking around with less of a chill, and less of a fear of slipping and falling is a rather enjoyable! (Bare pavement seems to have a slightly higher coefficient of friction than ice... go figure?)
What else did Nicole & I enjoy on our trip? Lower gas prices, lower everything else prices, a wall of very visible cigarettes in every convenience store (and walk in beer coolers where you can buy a single bottle of beer?!?!?), a gas station that served hoagies fresh to order (seriously... check out wawa.com), a random security check by a Canada Customs Agent (Border Security Dude?). Turns out I should have declared that half-eaten bag of whole unsalted almonds (and that package of Turkey Bacon) on my customs form. The CCA/BSD was cool about it all and didn't fine either of us or throw us in jail (or burn us at the stake circa 17th century witch-related persecution). There are more stories, and as most of you could have guessed much LONGER versions of the above that I can tell you at any time! If you see me, don't hesitate to ask! Just make sure you aren't doing anything for the rest of the day! (This is my method of trying to encourage some sort of social life whereby people feel compelled to seek me out for stories, conversation, and general merriment).
HEALTH CHECK: (No, not this... http://youtu.be/JvQRN5I2Smk) I am healthy! I am also terminally ill. It's called a paradox! Here is the problem with being terminally ill but appearing 100% fine... PEOPLE THINK YOU ARE 100% FINE! Great right? Well, not so much. I have little-to-no deficits from my brain surgery (which I am forever grateful for), and my medications don't cause me any significant side-effects. The only real change to my health has been the seizures I experience every now and then (6-8 weeks apart on average for those who like statistics). People on the bus don't point at me and go "Oh, that dude looks like he has terminal Stage 4 Glioblastoma Multiforme / a malignant brain tumour!" (That would just be weird... not to mention rude). So why is this bad? I think people have a misconception that I'm "over it" or "in remission". My brain tumour is currently stable, which is better than "growing like the American National Debt"! Given I am no longer taking any medications to combat my brain tumour, there is theoretically nothing to prevent its growth/return. Wednesday March 27th I will have an MRI. Friday April 5th I will find out how that MRI went. Until then I assume, as always, that all is well. How? How could I be so sure? So confident? Simple! I have to be! Plus it beats being in a state of total overwhelming panic 24 hours a day. I'm not saying I can simply "choose" to keep calm and carry on (I saw that on a mug once)! I simply keep in the back of my mind the thought that above all people on this planet I have good reason to make the most of every day (and indeed moment). I have this theory that by staying positive and keeping hope & faith that things will work out... or at least marginally increase the odds that they just might!
Nicole described it the other day as a blissful combination of denial and hope. Aside from the fact I'm probably misquoting her, I think she said it marvellously well. You can't always keep the harsh reality of your situation and the forefront of your mind. If you did, you would emotionally melt down quicker than chocolate in a chocolate fountain (mmmm.... chocolate fountain. Those things are so great! You can just stick any food item underneath its chocolatey flow to increase its deliciousness tenfold!) But where was I? Right, harsh reality. You can't focus on it always, but you can't ignore it either. The harsh reality of terminal illness seems to manifest itself in even the simplest and most trivial of ways.
I recently (re)-subscribed to MacLean's Magazine. Of course the more years you subscribe for the lower the price-per-issue works out to be. Normal people would weigh their options and likely go with the three year subscription for pennies per issue. I think "Well, three years is the cheapest per issue... provided I live that long. I don't go so far as to mathematically figure out the exact point where my life expectancy vs. subscription length returns equal value per "year option", but the general gist of such a notion does cross your mind.
I think another point of my daily life involves wanting to prove to others (and likely myself) that I am doing just great. I wan't people to see me at my best. I don't wan't people to feel sorry for me (who does?) so I generally put on a bright happy face for the world to see. I take pride in being able to tell you that 99% percent of the time that is how I feel on the inside. I think what people might miss however is that there is 1% of the time when I'm not feeling that way, and I choose to keep it for those times when no one else is around to see it. The only exception to this is my wife Nicole. She has seen me at my absolute worst to my absolute best. I have no fear in showing her all of me... my bright happy side, and my darker sad side. She is my wife, my life, and my soul-mate who I could not do any of this without. I think people often forget that she is in this boat with me. She might seem bright happy & smiles on the outside, but come home to feel more comfortable to let it all out and not hide the negative feelings from the world and others to see. I think there is a feeling of frustration when people say "You are so strong!" or "I can't believe how well you handle all of this!" You want to reply "But I'm not! And I don't!" Sometimes yes, sometimes it looks like you can handle anything in the wold that comes at you and that you are stronger than all of your life's demons. As you can probably tell I don't know how to put this into words very well. There is a paradoxical feeling of wanting to hide your sadness and self-perceived "weakness" while at the same time not wanting people to think you are as invincible as you look. I'm not sure either Nicole or I have fully come to terms with how to balance this contrast of conflicting feelings. I think we look to each other for help and support. We each have times when it all just becomes too much and there is no more hiding it. Each of us have had what I call "breakdowns" on a regular basis over the past 2+ years. Sometimes it feels good to have one. To get to that helpless feeling and maybe get really angry or frustrated or sad or depressed or all of the above and cry for a good half hour. But you come out of that half an hour recharged and ready to take on life and those same problems with a renewed sense of purpose.
I'm rambling now. It is once again my bedtime, so I'll leave it at this (I started this post over a week ago). I shall return to write more, as for some reason I can't quite figure out, people seem to like reading my endless non-coherent words arranged into sentences on their computer screens. Do I make sense? Not sure I do. Does the government make cents? Not anymore. Did that fit in to this blog at all? Maybe. I do love a good pun. Cheers!
--
Tom
Tuesday, February 12, 2013
10 Minute Update
Hello people of the planet Earth,
I trust you are well. Just a quick update on my medical condition:
Status = STILL ALIVE! :)
Details: I'm now on 18 pills a day, 18 of which are for stabilizing my seizures (also known as reducing them to "none"). What does that leave me for treating my actual tumour? Currently I am taking:
I trust you are well. Just a quick update on my medical condition:
Status = STILL ALIVE! :)
Details: I'm now on 18 pills a day, 18 of which are for stabilizing my seizures (also known as reducing them to "none"). What does that leave me for treating my actual tumour? Currently I am taking:
- Lots of optimistic thinking
- A general love of life
- The love & support of my truly amazing wife Nicole O'Leary-Sontag, who is more than I could ever ask for in a wife, soul mate, and best friend. (She's a pretty darned good cook too FYI).
- Proper diet (staying away from sugars, processed foods, 7-11, anything "2 for $5" from any fast food joint, unrefrigerated mayonnaise, etc.)
- The positive thoughts, wishes, and prayers I receive from all of you (so far they're working!!!)
- Doing things. Like work, shopping with that amazing wife of mine, or hanging out with the best friends on Earth. I simply must do more of that last one.
So that's that. I'm starting to yawn now, and I think I'm sitting at 9 minutes, so I should wrap this one up. Cheers to you all! And to those of you in the Central Standard Time Zone like me... have a great night! (To those of you in Madagascar... GOOD MORNING! And kudos on those funny kids movies).
--
Tom
Monday, February 11, 2013
The best interview I've ever seen
I once saw an interview on the program "The Hour" hosted by George Stroumboulopoulos, in which he spoke with a woman named June Callwood. I saw the interview long before I was ever diagnosed with cancer myself, and even then it touched me far more than almost anything else I'd ever experienced in my life up to that point. Finding myself where I am today, the interview only holds that much more meaning. I'd suggest giving it the 11 minutes & 16 minutes it takes to watch it (plus those annoying ads they make you watch first). If you are anything like me, you'll find it well worth the time. Check it out:
CBC Version (this version has the benefit of the full intro, but the annoyance of ads in the middle... IN THE MIDDLE!?!)
YouTube Version (this version only has annoying ads at the beginning, but not in the middle!... though it lacks the "intro" piece)
Obviously I'm still working at avoiding being in the shoes June was in when she was interviewed in the above video, however when I am (be it a year from now due to cancer, or 88 years from now due global warming) I can only hope to be as strong and honest as her. RIP June Callwood (1924-2007).
PS: I had recently written an entire blog update on my iPhone... YES MY iPHONE!!! After pressing "publish" the entry disappeared into thin air. Phones are magic like that. I am still in that "too ticked off at technology" to re-write it stage of grief (aka: "anger"). Once I hit "acceptance" I may just write a version of it again (from a computer this time), and feel as though my words were not lost forever. Until such time, they remain lost. Cheers!
--
Tom
CBC Version (this version has the benefit of the full intro, but the annoyance of ads in the middle... IN THE MIDDLE!?!)
YouTube Version (this version only has annoying ads at the beginning, but not in the middle!... though it lacks the "intro" piece)
Obviously I'm still working at avoiding being in the shoes June was in when she was interviewed in the above video, however when I am (be it a year from now due to cancer, or 88 years from now due global warming) I can only hope to be as strong and honest as her. RIP June Callwood (1924-2007).
PS: I had recently written an entire blog update on my iPhone... YES MY iPHONE!!! After pressing "publish" the entry disappeared into thin air. Phones are magic like that. I am still in that "too ticked off at technology" to re-write it stage of grief (aka: "anger"). Once I hit "acceptance" I may just write a version of it again (from a computer this time), and feel as though my words were not lost forever. Until such time, they remain lost. Cheers!
--
Tom
Thursday, January 24, 2013
For Aunt Bev,
Do I have an Aunt Bev? No. So why is this Blog Post titled as it is? It is merely meant to represent the idea that my blog is for any reader, whether they are members of my own family or otherwise. Whether they have a critical illness or not. Whether they are literate or not. Ok, well, that last one is a bit of a stretch. My point is that when I began this blog (back in December of 2010) the purpose of it was to inform all of those I knew about my medical situation and give them all of the updates as I learned about them. It was a method that was easier than mass texts and/or emails, however it has become more than just that, as people have told me over time that they have read my blog and gained insights from it they might not have otherwise. Often these people are individuals I had never met (and possibly might never have otherwise). So to the Aunt Bevs of the world I say this blog is for you. I can't say I have answers to all of the questions you may have, as I've not yet found answers to all of the questions I have had myself (and I'm the guy writing this thing)! Before I start to ramble incessantly I should start a new paragraph.
What do terminal illnesses, termites, and extra-terrestrial beings have in common? If you said the letter "T", "They're all hard to get rid of", or "I know very little about them", give yourself partial credit. The correct answer is: "They're not the end of the world!!!" Sure, that movie "Mars Attacks!" might have given you reason to doubt me, and those of you who've suffered insect infestations in their home at one point felt like "there was no end in sight". Let me ask you this: Did Richie and his grandmother not stop the alien invasion and receive the Congressional Medal of Honor from Taffy? To those of you trying to sell your homes, did you not finally get rid of those pesky little insects from your floorboards & between the drywall in your home? Sure most of the American government might have died in the process, and you might not have been able to do it without a visit or two from Poulin's Pest Control... but there is always a way!
When cooking any quality meal a good chef knows it only takes a basic set of culinary skills, upon which a simple set of ingredients can create a delicious meal. I have no culinary skills (as my wife can attest) in the kitchen of our apartment, however in the "kitchen of life" (I'm deep like that) I have one key ingredient that (like butter) can only stand to make any dish better... hope! I have ample amounts of hope and I keep it everywhere. I use so much of it I believe I may single handedly affect the commodity price of it worldwide. BUT WAIT! You are a good economist and know that a commodity price would only be affected as such if it were available in LIMITED QUANTITIES! Hope is LIMITLESS, and thus always free! So go for it everyone, use as much as you want and don't worry about inflating the price of it on the world markets :)
I can assure the average reader I was this crazy BEFORE my brain surgery December 2010... just ask my wife! My point is this: "There is always light at the end of the tunnel". This is a phrase my Dad said only about 832 times a day when I was growing up. He had a habit of repeating himself quite a bit. While repetitive, his words were nonetheless ones of wisdom, and certainly words to live by. It simply means there is always hope. No matter how bad things appear to be there is ALWAYS hope. Should I find myself back in a hospital bed hooked up to all kinds of IVs in immense pain, I will know that there is still hope. As long as I have my wife Nicole by my side to remind me of that I shall never give up that hope. That shall be today's second lesson of the day. Have someone who you can turn to that can remind you of that hope and tell you to "be strong" when you might need that reminder more than ever. It isn't weakness to rely on others to keep you strong. It's just being smart. There have been times I haven't been able to do things on my own in these past few years, and it has been those times that I've had a person as amazing as my wife to be my strength and push me to continue on. Even when she doesn't realize it she motivates me to stay as strong as I can. <I'm going to get a little mushy / sappy here so the romantic-averse can stop reading here>...
Being able to spend each day with her is a gift unto itself. Losing even a single day of that breaks my heart just to think of. Keeping to my diet, remaining mentally and emotionally strong, and hoping for that day that a cure for my illness will come keeps me here each day to ensure I don't give up the fight before that time comes. Will there come a time when they find answers to treating my type of brain cancer? I'm almost positive there will be. Will that time be tomorrow or two hundred years from now? I have no way of knowing. What I do know is that if I give up tomorrow the answer matters not. Should I fight on and the answers come while I'm still alive and here... then the fight was worth fighting. Should I find myself alive in ten years with no answer on the table having the ability to look back at ten great years spent fighting that fight with my wife by my side will it have been any less worth it? I should think not.
So whether you are facing Glioblastoma Multiforme, any other Brain Tumour, a sprained ankle, or simply a coffee with a bitter aftertaste... remember: there is always HOPE! They may find a cure, be able to do surgery, put you in a cast, or offer you some sort of coffee whitener or cream. Hope is never lost, and so long as you hang on to it life can take you to some pretty fun places along the way. I can say that because I'm an old man now! Booya! Who has two thumbs, just turned 29, and wasn't expected to live much past his 27th birthday? "THIS GUY" {Points at self with thumbs} Happy almost Friday everyone!
Cheers! :)
--
Tom
What do terminal illnesses, termites, and extra-terrestrial beings have in common? If you said the letter "T", "They're all hard to get rid of", or "I know very little about them", give yourself partial credit. The correct answer is: "They're not the end of the world!!!" Sure, that movie "Mars Attacks!" might have given you reason to doubt me, and those of you who've suffered insect infestations in their home at one point felt like "there was no end in sight". Let me ask you this: Did Richie and his grandmother not stop the alien invasion and receive the Congressional Medal of Honor from Taffy? To those of you trying to sell your homes, did you not finally get rid of those pesky little insects from your floorboards & between the drywall in your home? Sure most of the American government might have died in the process, and you might not have been able to do it without a visit or two from Poulin's Pest Control... but there is always a way!
When cooking any quality meal a good chef knows it only takes a basic set of culinary skills, upon which a simple set of ingredients can create a delicious meal. I have no culinary skills (as my wife can attest) in the kitchen of our apartment, however in the "kitchen of life" (I'm deep like that) I have one key ingredient that (like butter) can only stand to make any dish better... hope! I have ample amounts of hope and I keep it everywhere. I use so much of it I believe I may single handedly affect the commodity price of it worldwide. BUT WAIT! You are a good economist and know that a commodity price would only be affected as such if it were available in LIMITED QUANTITIES! Hope is LIMITLESS, and thus always free! So go for it everyone, use as much as you want and don't worry about inflating the price of it on the world markets :)
I can assure the average reader I was this crazy BEFORE my brain surgery December 2010... just ask my wife! My point is this: "There is always light at the end of the tunnel". This is a phrase my Dad said only about 832 times a day when I was growing up. He had a habit of repeating himself quite a bit. While repetitive, his words were nonetheless ones of wisdom, and certainly words to live by. It simply means there is always hope. No matter how bad things appear to be there is ALWAYS hope. Should I find myself back in a hospital bed hooked up to all kinds of IVs in immense pain, I will know that there is still hope. As long as I have my wife Nicole by my side to remind me of that I shall never give up that hope. That shall be today's second lesson of the day. Have someone who you can turn to that can remind you of that hope and tell you to "be strong" when you might need that reminder more than ever. It isn't weakness to rely on others to keep you strong. It's just being smart. There have been times I haven't been able to do things on my own in these past few years, and it has been those times that I've had a person as amazing as my wife to be my strength and push me to continue on. Even when she doesn't realize it she motivates me to stay as strong as I can. <I'm going to get a little mushy / sappy here so the romantic-averse can stop reading here>...
Being able to spend each day with her is a gift unto itself. Losing even a single day of that breaks my heart just to think of. Keeping to my diet, remaining mentally and emotionally strong, and hoping for that day that a cure for my illness will come keeps me here each day to ensure I don't give up the fight before that time comes. Will there come a time when they find answers to treating my type of brain cancer? I'm almost positive there will be. Will that time be tomorrow or two hundred years from now? I have no way of knowing. What I do know is that if I give up tomorrow the answer matters not. Should I fight on and the answers come while I'm still alive and here... then the fight was worth fighting. Should I find myself alive in ten years with no answer on the table having the ability to look back at ten great years spent fighting that fight with my wife by my side will it have been any less worth it? I should think not.
So whether you are facing Glioblastoma Multiforme, any other Brain Tumour, a sprained ankle, or simply a coffee with a bitter aftertaste... remember: there is always HOPE! They may find a cure, be able to do surgery, put you in a cast, or offer you some sort of coffee whitener or cream. Hope is never lost, and so long as you hang on to it life can take you to some pretty fun places along the way. I can say that because I'm an old man now! Booya! Who has two thumbs, just turned 29, and wasn't expected to live much past his 27th birthday? "THIS GUY" {Points at self with thumbs} Happy almost Friday everyone!
Cheers! :)
--
Tom
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