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!
Saturday, April 13, 2013
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
Friday, December 28, 2012
Time for a post
I know I know... it is time for me to write a new blog entry. This post is simply an acknowledgement of that fact. Rest assured one will be coming. I'd say by 2013, but I wouldn't want to get anyone's hopes up only for them to get let down. I mean dealing with that whole false [misunderstood] Mayan prophecy is one thing, but Tom promising a blog post and failing to deliver? Surely the world would end for a few of you out there at that point.
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