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
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