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.
Tuesday, November 27, 2012
...and it continues
To show you how "on top" of this blog thing I am, the below has been sitting as a draft since November 27th 2012. Yes folks, 2012 (a date most of you have still been writing this year out of sheer habit). Since then I've had several doctors visits and at least one seizure. I thus cannot verify the accuracy of what is written below, but I fear if I do not click "post" now the below will never make it to your eyes. After reading it myself, I will make the necessary updates in a future post (also to be done in 2013). Oh, and the results of my last MRI are in... Like a Horse's home it is STABLE!!!!! Now let's go back in time together to late November 2012...
9:40pm. See! I'm getting better at this! I promise both myself and Nicole that I will be in bed by 10:00pm tonight. Let the blogosphere be my witness!
9:41pm. Now Being in bed by 10pm will require me to do something I (along with most men on this planet I assume) have extreme difficulty doing... accurately judging my time. It will take me 5 minutes to brush my teeth / wash my face & take an additional 5 to get changed and actually make my way to my bed. This means I must stop blogging around 9:50pm.
9:43pm. 7 minutes. Wow! I need to start blogging earlier don't I? So where was I? Oh right... people who think it's "SO GREAT!" that I'm wrapping up my chemotherapy treatments soon.
#1) Why will this be happening you ask? Here is what I get from it all (which might or might not have any accuracy to it). My chemotherapy pills are some serious pills. If my chemo pills were a monster truck, they would be "Gravedigger". I meant to imply they are the biggest and baddest of all prescription medications. The fact I chose I truck whose name was inspired by the name for a person who literally digs holes in the ground for caskets containing dead bodies was unintentional and truly tasteless. But I wrote it, and I can't think of any way to change it now, can you? Anyways, what I was getting at was that they can do my body some serious damage. That is their point. They are designed to do my body some serious damage. The good news is they are designed to damage certain parts of my body faster than others... specifically the fastest growing cells in my body. Turns out tumour cells grow quicker than most so "BOOM!" they end up on the chemo medication's hit list. This is also why hair sometimes falls out during chemo treatment (it grows rather quickly as any person who pays a lot for hair cuts would surely know).
9:53pm. Damn! I mean "Darn!" (There could be kids reading... and again I'd change that first inappropriate word, but computers can only do so much. Text is like permanent ink, and I'd know. I'm in IT). "Shucks" "Bananas" "Crum bums" Ok, now I'm just getting silly. Nope, I'm just wasting time. 9:55pm. Going to bed fail. I must abandon ship and return to this blog entry tomorrow. I shall have to hit the "save as draft" button and admit poor judgement of time once again. I blame that "y chromosome". Off to brush my teeth and such. Goodnight!
...and we're back! And you thought time travel was impossible!? All it took was a drafts folder and my extreme procrastination!!! Glad I could help ;) Maybe next time I'll post the saved draft from my HoverCar(tm)!
9:40pm. See! I'm getting better at this! I promise both myself and Nicole that I will be in bed by 10:00pm tonight. Let the blogosphere be my witness!
9:41pm. Now Being in bed by 10pm will require me to do something I (along with most men on this planet I assume) have extreme difficulty doing... accurately judging my time. It will take me 5 minutes to brush my teeth / wash my face & take an additional 5 to get changed and actually make my way to my bed. This means I must stop blogging around 9:50pm.
9:43pm. 7 minutes. Wow! I need to start blogging earlier don't I? So where was I? Oh right... people who think it's "SO GREAT!" that I'm wrapping up my chemotherapy treatments soon.
#1) Why will this be happening you ask? Here is what I get from it all (which might or might not have any accuracy to it). My chemotherapy pills are some serious pills. If my chemo pills were a monster truck, they would be "Gravedigger". I meant to imply they are the biggest and baddest of all prescription medications. The fact I chose I truck whose name was inspired by the name for a person who literally digs holes in the ground for caskets containing dead bodies was unintentional and truly tasteless. But I wrote it, and I can't think of any way to change it now, can you? Anyways, what I was getting at was that they can do my body some serious damage. That is their point. They are designed to do my body some serious damage. The good news is they are designed to damage certain parts of my body faster than others... specifically the fastest growing cells in my body. Turns out tumour cells grow quicker than most so "BOOM!" they end up on the chemo medication's hit list. This is also why hair sometimes falls out during chemo treatment (it grows rather quickly as any person who pays a lot for hair cuts would surely know).
9:53pm. Damn! I mean "Darn!" (There could be kids reading... and again I'd change that first inappropriate word, but computers can only do so much. Text is like permanent ink, and I'd know. I'm in IT). "Shucks" "Bananas" "Crum bums" Ok, now I'm just getting silly. Nope, I'm just wasting time. 9:55pm. Going to bed fail. I must abandon ship and return to this blog entry tomorrow. I shall have to hit the "save as draft" button and admit poor judgement of time once again. I blame that "y chromosome". Off to brush my teeth and such. Goodnight!
...and we're back! And you thought time travel was impossible!? All it took was a drafts folder and my extreme procrastination!!! Glad I could help ;) Maybe next time I'll post the saved draft from my HoverCar(tm)!
Monday, November 26, 2012
Happy 2 years to ME!
11:00pm. I tend to get carried away when writing blogs, so I'm writing the time down for my own good to keep track of exactly how carried away I get. I made a deal (with myself obviously, as I find myself particularly easy to get along with) that I would try to be in bed by 10:00pm each night. Clearly I've already failed that (as I do most nights) so let's just keep 'er goin'!
11:03pm. As the title of this post would imply it is my two year anniversary! Of marriage? No, something much more painful than marriage. BRAIN SURGERY!!! See how I implied marriage was painful there? It is fun to do that. Also note that such an implication doesn't omit the possibility that marriage is truly awesome and I love my wife more than anything in the whole wide world? Very observant of you! To those of you in the background whispering "nice save", I can hear you and I don't appreciate it.
11:05pm. Yes indeed, two years since that day. November 26th, 2010. That was the date my skull was cut open and a portion of the inside of my head was cut out! I remember it like it was something I can't remember at all (which is probably a very good thing). I do remember being in a hospital bed for some time afterwards. I remember having to "relearn" using my own legs to walk (and finding that pesky "left arm" that was never where it should have been). NOTE: I don't recommend elective brain surgery, but to those of you spending hoards of your life savings on detrimental body-harming drugs like heroin or perhaps crystal meth... you can get a serious trip when parts of your body aren't where you think they are or should be... I'm just saying.
11:10pm. Then there was the whole "taking radiation and chemotherapy" thing. The radiation lasted a month or so, with only a partial loss of hair (though none of my underlying rugged good looks... see earlier posts for entertaining stories about when the "stuffing falling out of my own pillow" turned out to be my own hair! It sounds creepy because it was!!!). I've been going through subsequent rounds of chemotherapy on a near-monthly basis. Actually it is a 28 day cycle where I spend 5 days on chemo, and then 23 days off of it. For a long time I was on a drug called Accutane (read earlier posts about the joys of taking that drug) for the first 21 days of the cycle. This meant 5 days of feeling not-so-great (and 21 of feeling less than perfect) with 7 whole days to enjoy the benefits of not taking any medications!* *Other than the 5 or so I always took to: prevent possible seizures, reduce the swelling in my brain, reduce the stomach acid from taking so many pills. What I'm saying is that I now know how to count in milligrams :)
11:16pm. Sweet. I'm averaging less than 5 minutes per rambling paragraph. At this point I'll be in bed by midnight (having said nothing at all), or up until 5am next Tuesday (getting my main points across). So... 2 years!!! YAY!!! Ok, sort of. It all sounds impressive right? That's probably because at first I was given perhaps weeks to 3 months to live (worst case) or up to a year (best likely case). As those of you who know me best will know, in my first year of dealing with my unfriendly brain-residing cells, I managed to complete my 2nd University Degree (my Bachelor of Commerce [honours] double majoring in "Entrepreneurship / Small Business" and "Management of Organizations" the latter of which I received the "I .H. Asper School of Business Medal for Excellence" recognizing my achievement of having the highest standing of any student in my graduating class for that major. I'm not usually one to brag, but when someone cuts a whole in your brain, takes some material out, and sends you back on your way... getting a medal ain't so bad ;)
11:23pm. My wife has just told me it is time for bed. This is why I love her (but don't tell her that). She cares for me enough to look after me when I don't (which I never do). She is the reason I am still alive for multiple reasons (which you can again read about in prior posts). The reason she is telling me to get to bed is that if I don't, I will risk not getting enough sleep. Why? Because I am stubborn and will go to work tomorrow, even if I have not gotten enough sleep. I don't blame her for worrying. Me having a seizure worries her 1,000 times more than it worries me. This is because she is the one that has to deal with the after effects of my seizures (by taking care of me EVEN MORE than she does in a typical day). By continuing to type I'm being tremendously selfish and stubborn (two of my most prominent qualities as a husband).
11:27: Pushing my luck, I wanted to acknowledge my 2 year anniversary by stating my head has remained in one piece with most of its contents in tact (unfortunately including the remaining tumour cells). I have a rant to write about people telling me "You must be SO HAPPY to be off chemo soon!" (just a warning: I'm not, so don't say that to me). Cheers to you all eh?
11:29, and if I really hurry I can brush my teeth and be in bed by 11:43!!! Don't tell my dentist I'm going to forgo flossing tonight (as I have for the past 400+ some nights). Maybe tomorrow? I say that every night, so one night it will have to be true!
11:31pm. The end... for now... until I come back tomorrow to write more... which I always say I will do... but rarely end up doing... sorry ... life is keeping me busy... which is good.... so I shouldn't apologize... but I still am... wonder what my councilor would say about that... goodnight! :)
11:32pm. [sound of teeth being brushed]
11:33pm. Feeling of guilt for having not proofread the above. Feeling of fear knowing I have probably made multiple spelling errors. And possibly even grammatical ones!!! :()
11:03pm. As the title of this post would imply it is my two year anniversary! Of marriage? No, something much more painful than marriage. BRAIN SURGERY!!! See how I implied marriage was painful there? It is fun to do that. Also note that such an implication doesn't omit the possibility that marriage is truly awesome and I love my wife more than anything in the whole wide world? Very observant of you! To those of you in the background whispering "nice save", I can hear you and I don't appreciate it.
11:05pm. Yes indeed, two years since that day. November 26th, 2010. That was the date my skull was cut open and a portion of the inside of my head was cut out! I remember it like it was something I can't remember at all (which is probably a very good thing). I do remember being in a hospital bed for some time afterwards. I remember having to "relearn" using my own legs to walk (and finding that pesky "left arm" that was never where it should have been). NOTE: I don't recommend elective brain surgery, but to those of you spending hoards of your life savings on detrimental body-harming drugs like heroin or perhaps crystal meth... you can get a serious trip when parts of your body aren't where you think they are or should be... I'm just saying.
11:10pm. Then there was the whole "taking radiation and chemotherapy" thing. The radiation lasted a month or so, with only a partial loss of hair (though none of my underlying rugged good looks... see earlier posts for entertaining stories about when the "stuffing falling out of my own pillow" turned out to be my own hair! It sounds creepy because it was!!!). I've been going through subsequent rounds of chemotherapy on a near-monthly basis. Actually it is a 28 day cycle where I spend 5 days on chemo, and then 23 days off of it. For a long time I was on a drug called Accutane (read earlier posts about the joys of taking that drug) for the first 21 days of the cycle. This meant 5 days of feeling not-so-great (and 21 of feeling less than perfect) with 7 whole days to enjoy the benefits of not taking any medications!* *Other than the 5 or so I always took to: prevent possible seizures, reduce the swelling in my brain, reduce the stomach acid from taking so many pills. What I'm saying is that I now know how to count in milligrams :)
11:16pm. Sweet. I'm averaging less than 5 minutes per rambling paragraph. At this point I'll be in bed by midnight (having said nothing at all), or up until 5am next Tuesday (getting my main points across). So... 2 years!!! YAY!!! Ok, sort of. It all sounds impressive right? That's probably because at first I was given perhaps weeks to 3 months to live (worst case) or up to a year (best likely case). As those of you who know me best will know, in my first year of dealing with my unfriendly brain-residing cells, I managed to complete my 2nd University Degree (my Bachelor of Commerce [honours] double majoring in "Entrepreneurship / Small Business" and "Management of Organizations" the latter of which I received the "I .H. Asper School of Business Medal for Excellence" recognizing my achievement of having the highest standing of any student in my graduating class for that major. I'm not usually one to brag, but when someone cuts a whole in your brain, takes some material out, and sends you back on your way... getting a medal ain't so bad ;)
11:23pm. My wife has just told me it is time for bed. This is why I love her (but don't tell her that). She cares for me enough to look after me when I don't (which I never do). She is the reason I am still alive for multiple reasons (which you can again read about in prior posts). The reason she is telling me to get to bed is that if I don't, I will risk not getting enough sleep. Why? Because I am stubborn and will go to work tomorrow, even if I have not gotten enough sleep. I don't blame her for worrying. Me having a seizure worries her 1,000 times more than it worries me. This is because she is the one that has to deal with the after effects of my seizures (by taking care of me EVEN MORE than she does in a typical day). By continuing to type I'm being tremendously selfish and stubborn (two of my most prominent qualities as a husband).
11:27: Pushing my luck, I wanted to acknowledge my 2 year anniversary by stating my head has remained in one piece with most of its contents in tact (unfortunately including the remaining tumour cells). I have a rant to write about people telling me "You must be SO HAPPY to be off chemo soon!" (just a warning: I'm not, so don't say that to me). Cheers to you all eh?
11:29, and if I really hurry I can brush my teeth and be in bed by 11:43!!! Don't tell my dentist I'm going to forgo flossing tonight (as I have for the past 400+ some nights). Maybe tomorrow? I say that every night, so one night it will have to be true!
11:31pm. The end... for now... until I come back tomorrow to write more... which I always say I will do... but rarely end up doing... sorry ... life is keeping me busy... which is good.... so I shouldn't apologize... but I still am... wonder what my councilor would say about that... goodnight! :)
11:32pm. [sound of teeth being brushed]
11:33pm. Feeling of guilt for having not proofread the above. Feeling of fear knowing I have probably made multiple spelling errors. And possibly even grammatical ones!!! :()
Sunday, November 4, 2012
Happy After Wedding Day Jen & Randy!!!
Yesterday was a fantastic day! Nicole and I had the joy of taking part in the wedding of Jen & Randy Madsen (my sister-in-law, and new... official... "brother-in-law"). We were given the honour of being members of their wedding party, with Nicole the Matron of Honour, and myself a Groomsman. It was a nice reversal of the roles... given Jen was Nicole's Maid of Honour at our wedding, while Randy was one of my chosen groomsmen on that same day over a year ago.
Both Jen and Randy looked fantastic at their wedding which took place at Fort Gibraltar. The venue was unique, the atmosphere was fantastic, and good times were had by all. Jen looked absolutely stunning in her wedding dress (and constant smile) and I must say Randy did a splendid job of choosing the outfits for us groomsmen (I think I made that purple & grey vest look Damn good!). It was so much fun to spend the day talking to family we don't get to see as often as we might like. I had the honour of delivering a speech on behalf of "Momo" (or 'Morgan' as she is known while here in North America) Nic & Jen's cousin who is currently in Japan on an exchange program, returning in about a week from now. I was able to deliver a "Kampai" to the bride and groom, and must say Kampai to Morgan as well for teaching me my newest word :)
My wife Nicole looked stunning (as always) in her purple (surprise surprise... given it was Jen's wedding) bridesmaid's dress. I think both Nicole and I did a good job of looking great, without upstaging the couple of the night, who looked the best of anyone in the room by far ;)
Thank you Jen and Randy for having us both in your wedding party and making us such a special part of your special day! We both hope you have a great honeymoon in Vegas (how could you not?) and enjoy moving into your new home once you return. If you need help moving heavy boxes, I'm sure Nicole would love to help you out. I can even come too!... to shout words of encouragement at you all so that you do not lose motivation. I'm just kidding of course... I wouldn't be totally useless... I could hold a door or two open for you while there. Once again... Kampai! (CHEERS!!!)
--
Tom
Both Jen and Randy looked fantastic at their wedding which took place at Fort Gibraltar. The venue was unique, the atmosphere was fantastic, and good times were had by all. Jen looked absolutely stunning in her wedding dress (and constant smile) and I must say Randy did a splendid job of choosing the outfits for us groomsmen (I think I made that purple & grey vest look Damn good!). It was so much fun to spend the day talking to family we don't get to see as often as we might like. I had the honour of delivering a speech on behalf of "Momo" (or 'Morgan' as she is known while here in North America) Nic & Jen's cousin who is currently in Japan on an exchange program, returning in about a week from now. I was able to deliver a "Kampai" to the bride and groom, and must say Kampai to Morgan as well for teaching me my newest word :)
My wife Nicole looked stunning (as always) in her purple (surprise surprise... given it was Jen's wedding) bridesmaid's dress. I think both Nicole and I did a good job of looking great, without upstaging the couple of the night, who looked the best of anyone in the room by far ;)
Thank you Jen and Randy for having us both in your wedding party and making us such a special part of your special day! We both hope you have a great honeymoon in Vegas (how could you not?) and enjoy moving into your new home once you return. If you need help moving heavy boxes, I'm sure Nicole would love to help you out. I can even come too!... to shout words of encouragement at you all so that you do not lose motivation. I'm just kidding of course... I wouldn't be totally useless... I could hold a door or two open for you while there. Once again... Kampai! (CHEERS!!!)
--
Tom
Friday, October 19, 2012
And the rusults are...?
Got my MRI results earlier today. Thought I'd share them with you, given I said I would.
"There is no suggestion of progression" = good :)
Translation: It ain't getting bigger. = Sweet deal!!!
The report went on to state "The appearance of the remainder of the brain is unremarkable"
Not sure if I should be thankful or insulted on that last bit.
In the end, today was a good day. TGIF indeed. Cheers to ye all, and to all a goodnight!
--
Tom
"There is no suggestion of progression" = good :)
Translation: It ain't getting bigger. = Sweet deal!!!
The report went on to state "The appearance of the remainder of the brain is unremarkable"
Not sure if I should be thankful or insulted on that last bit.
In the end, today was a good day. TGIF indeed. Cheers to ye all, and to all a goodnight!
--
Tom
Thursday, October 18, 2012
TGIF? Maybe?
Hello readers!
Some of you might have heard that this week has been a rough one. I had a seizure on Monday the 15th while waiting for the bus. I had a sense I had a seizure coming on, and for some reason thought I could possibly "will myself" into not having one. I remember thinking "Maybe if I walk up the sidewalk and get some fresh air I won't have one" which is a ridiculous thought looking back on things, but in my defense having a seizure implies my brain isn't quite firing on all cylinders (or perhaps is firing on too many at once). My point is that I don't think too clearly when I'm having a seizure. I also tend to lack any memory of my seizures and/or any period in the short time after it has occurred. In this case I remember deciding that I could not "walk off" my upcoming seizure so I should get back home (to my apartment across the street from where I was standing). I couldn't tell you if there were cars coming or not, as I can't remember crossing the street. What I can tell you is that I remember people standing over me (only be the fact I heard their voices) one of which asked me if I had someone they could contact. I gave them my wife Nicole's phone number, as she was still at home back at the apartment. The next thing I knew there was a fire truck and paramedics (firemen) helping me into their truck. They took my stats (blood glucose levels, blood pressure, oxygen saturation levels, and after determining that my oxygen levels were low, set me up on an oxygen line, and called Nicole after I gave them her number as well. Nicole had the pleasant surprise of waking up to our landlord banging on our front door and a call from a paramedic saying that they had found me lying down on the median between the north & southbound lanes of St. Anne's. I had chosen to wear a brand new pair of leather shoes that particular day, which were significantly damaged on the front of the shoe. We figure I must have tripped on the cement portion of the median (as I can't judge distance or depth well when I'm having a seizure... go figure) which caused me to trip & fall onto the grass and possibly into a tree on the median. This is based upon the paramedics assumption I had run into the tree as well as the fact I have a slightly bruised forehead and received a few scratches to my nose. My glasses were a bit dirty, as well as was the left side of my jacket and backpack. After any seizure I've experienced I feel completely drained of energy and extremely tired. In this case (seizure plus potential face-plant into a tree or the ground) left my body feeling quite out-of-sorts. I'm still a bit sore from it all.
But my lovely wife, as always, took care of me. She brought me back home, got me into bed, and I enjoyed some much needed rest. Her Dad swung by our place later that day to check on us, and brought some medicine for me in the form of an order of a Teen Burger and some Onion Rings. Thanks Steve!
I still feel run down from the whole thing, but I'm feeling better now. I have to say the whole ordeal shook my confidence as I had been feeling pretty good after having gone since July 27th since my last seizure. If I can go at least ONE CONSECUTIVE YEAR without having one I can find myself back in the driver seat of a car, instead of being dependent upon my wonderful wife to drive me wherever the Winnipeg Transit System tends not to service. Unfortunately this seizure shook even my confidence in taking the bus to work, something I had previously took pride in. Being in my situation leaves me feeling dependent upon others for a lot of things. Anyone who has been without a license for any extended period of time can appreciate just how much of an inconvenience it truly is. I can't just up and go out for food or go shopping on my own. I have to either take the bus (if / when the schedules & routes permit it), or get Nicole to drive me. Taking the bus to work each morning made me feel independent. It made me feel good not only take a burden off of Nicole's shoulders, but also give me my own time & space. I could (and often did) listen to my nerdy podcasts each morning. I could sit among the rest of society leaving for work or school living their normal lives. Since Monday I have not taken the bus. I haven't had the guts to get back on for fear that I could have another seizure and be on my own with no one around to help me. Nicole was right to point out that we were lucky I had my seizure when I was still so close to home. I know it worries her at the best of times to have me out there without her to watch over me and ensure nothing bad happens to me. She worries too much and takes on too much responsibility for my safety. I wish she didn't, but I can see why she does. I'm sure if I were in her shoes I'd be doing the same things and feeling the same way. I'd just like to be able to say "No worries love! Nothing bad is going to happen to me today!" And be able to say it with the sort of absolute (perhaps naive) confidence I once did.
We go for my MRI results tomorrow afternoon (hence the title of this blog entry). I'm hoping it will be a Friday worth saying TGIF! I just want good results and then the weekend to relax and unwind with my wife. It is the same thing each and every time we have my "Friday after" (MRI results) visits. We stress and worry all the way up to the appointment. We will try to sleep tonight (I'll probably succeed better than Nicole will at this). We will wake up in the morning, probably feeling like we haven't slept at all. We will head to the HSC, park the car in the underground, head on over to get my bloodwork done (a process I'm all too familiar with), then wait forever just to get the bloodwork done. Next we'll head over to "Clinic 2" at CancerCare. There we'll sign-in and wait forever to be called in. There I will be weighed in, and we'll be sent to a room to sit and wait (forever) for the doctor to come see us. We'll likely see a nurse first. Then my oncologist will come in and give us the results. We'll try to judge the look on his face, the movements he makes, and interpret them as any sort of indication long before he utters his first words. Then he'll speak and our lives will change. Either we'll be cast from our current world of unknowing into the wonderful (but often short-lived) world of temporary relief, or the other world... that of fear, unknowing, and panic.
Regardless we'll be there together, as we always have been, and I wouldn't have it any other way. I'm still the luckiest guy I know. If I could change having a terminal illness in the form of a cancerous brain tumour... I would. If doing so meant changing any part of my life outside of that, and losing any of the people I have closest to me in my life (my wife being at the top of that list) I would not change a thing. My life is seriously awesome. Tomorrow might not be seriously awesome, but it might just be. I think I kicked ass during that MRI last week, so I can't see how the results could be anything less than awesome. That and I have all of you thinking about me and sending me your best wishes, thoughts and prayers. I will post before the day is done at least a brief post describing my update. Thanks & Cheers!
--
Tom
PS: I'm too tired to check this one over for spelling and/or grammar. It's all yours Luke!
Some of you might have heard that this week has been a rough one. I had a seizure on Monday the 15th while waiting for the bus. I had a sense I had a seizure coming on, and for some reason thought I could possibly "will myself" into not having one. I remember thinking "Maybe if I walk up the sidewalk and get some fresh air I won't have one" which is a ridiculous thought looking back on things, but in my defense having a seizure implies my brain isn't quite firing on all cylinders (or perhaps is firing on too many at once). My point is that I don't think too clearly when I'm having a seizure. I also tend to lack any memory of my seizures and/or any period in the short time after it has occurred. In this case I remember deciding that I could not "walk off" my upcoming seizure so I should get back home (to my apartment across the street from where I was standing). I couldn't tell you if there were cars coming or not, as I can't remember crossing the street. What I can tell you is that I remember people standing over me (only be the fact I heard their voices) one of which asked me if I had someone they could contact. I gave them my wife Nicole's phone number, as she was still at home back at the apartment. The next thing I knew there was a fire truck and paramedics (firemen) helping me into their truck. They took my stats (blood glucose levels, blood pressure, oxygen saturation levels, and after determining that my oxygen levels were low, set me up on an oxygen line, and called Nicole after I gave them her number as well. Nicole had the pleasant surprise of waking up to our landlord banging on our front door and a call from a paramedic saying that they had found me lying down on the median between the north & southbound lanes of St. Anne's. I had chosen to wear a brand new pair of leather shoes that particular day, which were significantly damaged on the front of the shoe. We figure I must have tripped on the cement portion of the median (as I can't judge distance or depth well when I'm having a seizure... go figure) which caused me to trip & fall onto the grass and possibly into a tree on the median. This is based upon the paramedics assumption I had run into the tree as well as the fact I have a slightly bruised forehead and received a few scratches to my nose. My glasses were a bit dirty, as well as was the left side of my jacket and backpack. After any seizure I've experienced I feel completely drained of energy and extremely tired. In this case (seizure plus potential face-plant into a tree or the ground) left my body feeling quite out-of-sorts. I'm still a bit sore from it all.
But my lovely wife, as always, took care of me. She brought me back home, got me into bed, and I enjoyed some much needed rest. Her Dad swung by our place later that day to check on us, and brought some medicine for me in the form of an order of a Teen Burger and some Onion Rings. Thanks Steve!
I still feel run down from the whole thing, but I'm feeling better now. I have to say the whole ordeal shook my confidence as I had been feeling pretty good after having gone since July 27th since my last seizure. If I can go at least ONE CONSECUTIVE YEAR without having one I can find myself back in the driver seat of a car, instead of being dependent upon my wonderful wife to drive me wherever the Winnipeg Transit System tends not to service. Unfortunately this seizure shook even my confidence in taking the bus to work, something I had previously took pride in. Being in my situation leaves me feeling dependent upon others for a lot of things. Anyone who has been without a license for any extended period of time can appreciate just how much of an inconvenience it truly is. I can't just up and go out for food or go shopping on my own. I have to either take the bus (if / when the schedules & routes permit it), or get Nicole to drive me. Taking the bus to work each morning made me feel independent. It made me feel good not only take a burden off of Nicole's shoulders, but also give me my own time & space. I could (and often did) listen to my nerdy podcasts each morning. I could sit among the rest of society leaving for work or school living their normal lives. Since Monday I have not taken the bus. I haven't had the guts to get back on for fear that I could have another seizure and be on my own with no one around to help me. Nicole was right to point out that we were lucky I had my seizure when I was still so close to home. I know it worries her at the best of times to have me out there without her to watch over me and ensure nothing bad happens to me. She worries too much and takes on too much responsibility for my safety. I wish she didn't, but I can see why she does. I'm sure if I were in her shoes I'd be doing the same things and feeling the same way. I'd just like to be able to say "No worries love! Nothing bad is going to happen to me today!" And be able to say it with the sort of absolute (perhaps naive) confidence I once did.
We go for my MRI results tomorrow afternoon (hence the title of this blog entry). I'm hoping it will be a Friday worth saying TGIF! I just want good results and then the weekend to relax and unwind with my wife. It is the same thing each and every time we have my "Friday after" (MRI results) visits. We stress and worry all the way up to the appointment. We will try to sleep tonight (I'll probably succeed better than Nicole will at this). We will wake up in the morning, probably feeling like we haven't slept at all. We will head to the HSC, park the car in the underground, head on over to get my bloodwork done (a process I'm all too familiar with), then wait forever just to get the bloodwork done. Next we'll head over to "Clinic 2" at CancerCare. There we'll sign-in and wait forever to be called in. There I will be weighed in, and we'll be sent to a room to sit and wait (forever) for the doctor to come see us. We'll likely see a nurse first. Then my oncologist will come in and give us the results. We'll try to judge the look on his face, the movements he makes, and interpret them as any sort of indication long before he utters his first words. Then he'll speak and our lives will change. Either we'll be cast from our current world of unknowing into the wonderful (but often short-lived) world of temporary relief, or the other world... that of fear, unknowing, and panic.
Regardless we'll be there together, as we always have been, and I wouldn't have it any other way. I'm still the luckiest guy I know. If I could change having a terminal illness in the form of a cancerous brain tumour... I would. If doing so meant changing any part of my life outside of that, and losing any of the people I have closest to me in my life (my wife being at the top of that list) I would not change a thing. My life is seriously awesome. Tomorrow might not be seriously awesome, but it might just be. I think I kicked ass during that MRI last week, so I can't see how the results could be anything less than awesome. That and I have all of you thinking about me and sending me your best wishes, thoughts and prayers. I will post before the day is done at least a brief post describing my update. Thanks & Cheers!
--
Tom
PS: I'm too tired to check this one over for spelling and/or grammar. It's all yours Luke!
Monday, October 8, 2012
Thanks eh?
Of all people, I should think I have the most to be thankful for. Okay, at least more than most people. It isn't hard to guess what falls at the top of my list...
I am still alive!
Now that's pretty cool. Especially given I was told I'd have 3 months to 1 year to live... almost 2 years ago. Things are still as unsure as they were at the beginning of my journey, but for one key difference. How I view life and all contained within it has changed dramatically. Getting a terminal can do that to a guy. I am thankful for the friends I have. Though I may have fewer friends than I did prior to my diagnosis, the friendships I do have are so much more meaningful than any I had prior. I am thankful for the amazing amount of support I experience on a daily basis. I cannot explain fully just how much support I have. It comes from all sides. It comes from those members of my family who have stayed close to me throughout this process, it comes from those friends who have stuck around from the day of my surgery to this very day, and it comes above all else from my wife, who I might have mentioned before. Nicole O'Leary-Sontag is the best thing to have happened to me without a doubt. I could not manage my daily life without her, of that I am sure. We go through the good times and the bad together. As you might imagine, the bad times can be overwhelmingly bad, and occur just a little more often in our lives than either of us might like. This being said, she always finds a way to keep me going, to keep me positive, and keep me fighting. What I do, I do for many people and many reasons, but without a doubt I do it for her above all else.
Those of you closest to me probably know I am very upfront and unafraid to discuss my cancer. I'm sure some people would find it odd that I am so direct about such a sensitive topic. I am because I have to be. It is my life and I deal with it every day. If I were afraid to approach to topic with others it would mean I was afraid of my every moment of every day. I am thankful that my wife not only understands this, but is right on board with me... going along with my dark inappropriate jokes, and throwing others right back at me. If we didn't find those moments to laugh together it would be a sad life for us both for sure.
I am thankful for friends that understand my situation and have no problems going right along with it. Having friends that aren't afraid to ask me questions because they don't want to upset me. What upsets me is people who I can see purposely keep their distance from me because of their lack of comfort with the situation.
I am thankful that I have little health concerns (other than the whole "brain tumour" thing) going on right now. I still don't have headaches, haven't had a seizure since late July [sound of wood being knocked on], and experience no pain other than the daily injections I must give myself (and bi-weekly CancerCare blood exams). For a guy who has such a bleak health outlook, I feel pretty damn good almost each and every day! I find that being so 'healthy' in appearance gives people the false impression that I am ultimately "fine" and that "I will beat this thing". This is ultimately my plan, however the reality is that without advances in medication I will not likely live more than a few years. I will be ending my two-year chemotherapy treatment in December. After that it will be up to my will power, diet, and the hopes, prayers, and wishes of others to keep my tumour from growing. There are many options beyond this. If my tumour starts to grow back after being taken off the chemo, I could be put back on (with the hopes it works), another surgery could be performed (if it is growing back in only one place), or of course some combination thereof. If it starts to grow back in multiple places... I will need a lot more of your thoughts & prayers.
Speaking of which, I am more than thankful for the thoughts, wishes, prayers, and words of support I've received from so many people. Some close family members, some close friends, some distant friends & family, and some complete strangers. I can't thank any of you enough, and can only point to the fact I'm here writing this blog as proof you must be doing me some good ;)
I wish typed up words could convey the amount it truly touches me how much some of you have been affected by my situation. I could never have dreamed that I'd have received as much support as I have. I should say that Nicole & I have received, as both of us have been the recipients of so much (very much needed) love and support over the past 22+ months.
I am thankful for my in-laws who would be my family even if there were no laws stipulating such. You guys have meant so much to both Nicole and I and I can say with absolutely certainty that we would not have been able to make it this far without you.
I am thankful for my medical team who I would claim to be the best medical team there is. From my oncologist to my head nurse to my pharmacist to my social worker & the entire CancerCare team. You might think I dread going in to CancerCare for my frequent visits & appointments, but with those people there to help us through everything, things aren't as bad as they might otherwise be.
I am also thankful that none of the crazy Winnipeg drivers have taken my life prematurely (though try they certainly have), which leads me to thank my amazing wife once again, who has managed to keep both of us out of the ER from the many people who have tried (for some reason) to take our lives via vehicular manslaughter.
I'm thankful for my wife Nicole for making me hot chocolate... from scratch... without any sugar or unnatural ingredients just so that I could avoid missing out on one more thing. While I'm at it I thank my wife for making amazing dinners to make up for my severe cooking ability deficiency (it must come about as a side effect of one of the meds).
I thank Nicole for putting up with the fact I am a man who can be stubborn, lacking the ability to multitask or listen, all ON TOP of dealing with the whole cancer thing.
I thank you all for reading my endless rant, and Google for creating the means by which I can post my thoughts online for you all to read. I thank Samsung for creating the monitor which has allowed me to see what I have typed what I was thinking on this HP keyboard (who I thank for making said keyboard... despite the fact they seriously made the left shift key too small). I thank Al Gore for inventing the Internet to begin with, and I guess gravity for keeping everything pinned conveniently down to this computer desk (thanks Steve for letting me use your computer eh?).
THANK YOU ALL FOR EVERYTHING (is I think what I was trying to say). I must now go off to eat Thanksgiving dinner #2 prepared by Steve & Pat (who I thank for making and inviting us over for). I must not forget to thank my Aunt & Grandma who prepared and served Thanksgiving dinner #1 (which means I must thank my Uncle for providing the house in which it was served, and thus the Queen, who somehow made it all possible?). CHEERS!!!
--
Tom
I am still alive!
Now that's pretty cool. Especially given I was told I'd have 3 months to 1 year to live... almost 2 years ago. Things are still as unsure as they were at the beginning of my journey, but for one key difference. How I view life and all contained within it has changed dramatically. Getting a terminal can do that to a guy. I am thankful for the friends I have. Though I may have fewer friends than I did prior to my diagnosis, the friendships I do have are so much more meaningful than any I had prior. I am thankful for the amazing amount of support I experience on a daily basis. I cannot explain fully just how much support I have. It comes from all sides. It comes from those members of my family who have stayed close to me throughout this process, it comes from those friends who have stuck around from the day of my surgery to this very day, and it comes above all else from my wife, who I might have mentioned before. Nicole O'Leary-Sontag is the best thing to have happened to me without a doubt. I could not manage my daily life without her, of that I am sure. We go through the good times and the bad together. As you might imagine, the bad times can be overwhelmingly bad, and occur just a little more often in our lives than either of us might like. This being said, she always finds a way to keep me going, to keep me positive, and keep me fighting. What I do, I do for many people and many reasons, but without a doubt I do it for her above all else.
Those of you closest to me probably know I am very upfront and unafraid to discuss my cancer. I'm sure some people would find it odd that I am so direct about such a sensitive topic. I am because I have to be. It is my life and I deal with it every day. If I were afraid to approach to topic with others it would mean I was afraid of my every moment of every day. I am thankful that my wife not only understands this, but is right on board with me... going along with my dark inappropriate jokes, and throwing others right back at me. If we didn't find those moments to laugh together it would be a sad life for us both for sure.
I am thankful for friends that understand my situation and have no problems going right along with it. Having friends that aren't afraid to ask me questions because they don't want to upset me. What upsets me is people who I can see purposely keep their distance from me because of their lack of comfort with the situation.
I am thankful that I have little health concerns (other than the whole "brain tumour" thing) going on right now. I still don't have headaches, haven't had a seizure since late July [sound of wood being knocked on], and experience no pain other than the daily injections I must give myself (and bi-weekly CancerCare blood exams). For a guy who has such a bleak health outlook, I feel pretty damn good almost each and every day! I find that being so 'healthy' in appearance gives people the false impression that I am ultimately "fine" and that "I will beat this thing". This is ultimately my plan, however the reality is that without advances in medication I will not likely live more than a few years. I will be ending my two-year chemotherapy treatment in December. After that it will be up to my will power, diet, and the hopes, prayers, and wishes of others to keep my tumour from growing. There are many options beyond this. If my tumour starts to grow back after being taken off the chemo, I could be put back on (with the hopes it works), another surgery could be performed (if it is growing back in only one place), or of course some combination thereof. If it starts to grow back in multiple places... I will need a lot more of your thoughts & prayers.
Speaking of which, I am more than thankful for the thoughts, wishes, prayers, and words of support I've received from so many people. Some close family members, some close friends, some distant friends & family, and some complete strangers. I can't thank any of you enough, and can only point to the fact I'm here writing this blog as proof you must be doing me some good ;)
I wish typed up words could convey the amount it truly touches me how much some of you have been affected by my situation. I could never have dreamed that I'd have received as much support as I have. I should say that Nicole & I have received, as both of us have been the recipients of so much (very much needed) love and support over the past 22+ months.
I am thankful for my in-laws who would be my family even if there were no laws stipulating such. You guys have meant so much to both Nicole and I and I can say with absolutely certainty that we would not have been able to make it this far without you.
I am thankful for my medical team who I would claim to be the best medical team there is. From my oncologist to my head nurse to my pharmacist to my social worker & the entire CancerCare team. You might think I dread going in to CancerCare for my frequent visits & appointments, but with those people there to help us through everything, things aren't as bad as they might otherwise be.
I am also thankful that none of the crazy Winnipeg drivers have taken my life prematurely (though try they certainly have), which leads me to thank my amazing wife once again, who has managed to keep both of us out of the ER from the many people who have tried (for some reason) to take our lives via vehicular manslaughter.
I'm thankful for my wife Nicole for making me hot chocolate... from scratch... without any sugar or unnatural ingredients just so that I could avoid missing out on one more thing. While I'm at it I thank my wife for making amazing dinners to make up for my severe cooking ability deficiency (it must come about as a side effect of one of the meds).
I thank Nicole for putting up with the fact I am a man who can be stubborn, lacking the ability to multitask or listen, all ON TOP of dealing with the whole cancer thing.
I thank you all for reading my endless rant, and Google for creating the means by which I can post my thoughts online for you all to read. I thank Samsung for creating the monitor which has allowed me to see what I have typed what I was thinking on this HP keyboard (who I thank for making said keyboard... despite the fact they seriously made the left shift key too small). I thank Al Gore for inventing the Internet to begin with, and I guess gravity for keeping everything pinned conveniently down to this computer desk (thanks Steve for letting me use your computer eh?).
THANK YOU ALL FOR EVERYTHING (is I think what I was trying to say). I must now go off to eat Thanksgiving dinner #2 prepared by Steve & Pat (who I thank for making and inviting us over for). I must not forget to thank my Aunt & Grandma who prepared and served Thanksgiving dinner #1 (which means I must thank my Uncle for providing the house in which it was served, and thus the Queen, who somehow made it all possible?). CHEERS!!!
--
Tom
Wednesday, September 26, 2012
Tuesday, September 11, 2012
{Insert Title of Blog Here}
NOTE: Somehow I managed to delete a blog post (I blame you Blogger App!!!) so I am reposting it below having salvaged it from an old notepad document. Thank you iMac! The date on this post is a complete guess. I couldn't let my random nonsensical rambling be lost from the Internet after all!
<Insert Blog Entry Here>
The title and above line are both jokes. They are designed to make you laugh, possibly out loud. If you laugh inside your own head that is okay too, just don't type "limoh" in the comments. Actually, don't leave anything in the comments as I don't read them. Seriously. Ok, maybe at some point I'll go back and read over past comments, but I usually don't. I log in to my Blogger account to write the posts, not track the comments. I've had people before say "Did you see the comment I left you?" only to see their disappointment as I explain to them I never check the comments. I DO however look at the posts left on my Facebook Page below the link I always post to this blog, so putting a "comment" on Facebook ensures I will see it. So I suppose you could post a comment on the Blogger page, however you would then need to leave me a message on Facebook in order to let me know I had to check my Blogger account to view your message, so really... you'd just be making work for us all. Am I making sense yet? No? Good! Limoh.
So on the "staying alive" front I am, as Charlie Sheen would put it, "WINNING!" Now I must explain to any of you who were cryogenically frozen in the mid to late 90's, as you'll be thinking "Hasn't he chosen the wrong Estevez brother? Surely a reference to a winning member of the Estevez family must be in reference to Emilio and his dramatic portrayal of Gordon Bombay. Surely Tom's fight is equivalent to the use of a technique known only as "The Flying V"? Why is he comparing himself to someone who last starred in "Hot Shots! Part Deux"? Let me tell you my still defrosting friend, you have some time to spend on Charlie Sheen's Wikipedia page!!! "What's Wikipedia???" Oh right... basically the place where you can find out anything/everything with at least 62% confidence that it is correct! Who can argue with those odds? In the end, I think with the amount of drugs Charlie has taken, the two of us might be more comparable than you'd think! At least mine come with a doctor's prescription. That and the key difference that mine are being used to extend my life, not risk shortening it.
I think I've wasted about an hour trying to say nothing so far (most of that time was spent on Wikipedia, I'm not going to lie). I did have to spell check a couple of things as well. In schools, how long will it be before teachers instruct their students as follows:
"Ok kids, now before printing your essays make sure to right click on any of the words that are underlined with a red squiggle. You'll then want to choose the word that most likely matches what you were trying to spell. Unlike your iPhones the words do not change all by themselves. I know I know, English sucks. As for the things with green squiggles you can pretty much ignore those. I find it is usually the case that the computer simply doesn't realize that you don't intend to have perfect grammar as met by some 1800's standard of English formed before computers were invented. If I want to start a sentence with an "and" I'm going to. And I'm serious about that! Ok, Jimmy, I can see you're just liyoh so just stop it. You're making everyone around you lol."
For the readers of my blog, I highly suggest reading the above paragraph in the voice of Mr. Mackey. If you don't know who Mr. Mackey is, you should really invest some quality time in an educational program I like to call "South Park". Just my tip for the day.
Now, I wanted to address something very important in this blog: you should most certainly NOT live each day like it was your last. Think about it. Why would this ever strike anyone as a "good" idea? Boom, it's my last day. Am I going to brush my teeth? No. Will I do the laundry? The dishes? Any chores at all? Will I go to work? No, no, no & no! I'd probably eat buckets of Ice Cream while watching non-stop Dr. Who episodes with my wife... but that's just me. My point is that you should live your live as though time is a limited and precious gift that we must not waste. Now I realize I'm suggesting people get more out of life in a motto that takes several more seconds to say, but I think it the end, it is worth it. Pay your bills, go to work, do the laundry & the dishes, but don't forget that one day your time will run out (Did it just get dark in here, or was that just me?) Don't be like me and fail to keep that blog updated just because you were too busy watching episode after episode after episode of Dr. Who with your wife. Ok, never-mind, I take that last part back. I regret nothing about the last several days & weeks of Dr. Who watching with my wife. We've almost caught up watching re-runs in time to start with the all-new season!!! Something you might not have previously known about me? I'm a huge Dr. Who fan/nerd. My iPhone case is a Tardis. Don't know what a Tardis is? Phone me and I will spend half an hour explaining it to you!!!
In other nerd news, I've recently decided to take on the "Lord of the Rings" Trilogy. Thanks to a gentleman by the name of Kevin I will soon be up to do on all things middle-earth and Hobbit related. I have already watched the first part of the first part (if that makes sense?) and look forward to the many parts (and parts of parts) to come!!!
I have much more to blog about, but before I blog all over this computer desk (and make quite a mess in the process) I must post it to the interwebs (otherwise it shall become much like the many many (MANY) post that have never made it to the magical iterwebs as, after writing various entries I have worried about how things sounded and thus never posted them and ultimately they all became obsolete. NO MORE I SAY! From now on I shall try to post what I've got, and worry about whether there is any theme or sense of logic to my post after I post it online.
This one is for you huddled masses and roommates I have never met! CHEERS!
--
Tom
PS: To you masses who are not huddled... you just don't get it do you? In order to be a "mass" you must be in one large group, hence the "huddled" part. You non-huddled masses are just regular people, though I will let you read the above as well.
<Insert Blog Entry Here>
The title and above line are both jokes. They are designed to make you laugh, possibly out loud. If you laugh inside your own head that is okay too, just don't type "limoh" in the comments. Actually, don't leave anything in the comments as I don't read them. Seriously. Ok, maybe at some point I'll go back and read over past comments, but I usually don't. I log in to my Blogger account to write the posts, not track the comments. I've had people before say "Did you see the comment I left you?" only to see their disappointment as I explain to them I never check the comments. I DO however look at the posts left on my Facebook Page below the link I always post to this blog, so putting a "comment" on Facebook ensures I will see it. So I suppose you could post a comment on the Blogger page, however you would then need to leave me a message on Facebook in order to let me know I had to check my Blogger account to view your message, so really... you'd just be making work for us all. Am I making sense yet? No? Good! Limoh.
So on the "staying alive" front I am, as Charlie Sheen would put it, "WINNING!" Now I must explain to any of you who were cryogenically frozen in the mid to late 90's, as you'll be thinking "Hasn't he chosen the wrong Estevez brother? Surely a reference to a winning member of the Estevez family must be in reference to Emilio and his dramatic portrayal of Gordon Bombay. Surely Tom's fight is equivalent to the use of a technique known only as "The Flying V"? Why is he comparing himself to someone who last starred in "Hot Shots! Part Deux"? Let me tell you my still defrosting friend, you have some time to spend on Charlie Sheen's Wikipedia page!!! "What's Wikipedia???" Oh right... basically the place where you can find out anything/everything with at least 62% confidence that it is correct! Who can argue with those odds? In the end, I think with the amount of drugs Charlie has taken, the two of us might be more comparable than you'd think! At least mine come with a doctor's prescription. That and the key difference that mine are being used to extend my life, not risk shortening it.
I think I've wasted about an hour trying to say nothing so far (most of that time was spent on Wikipedia, I'm not going to lie). I did have to spell check a couple of things as well. In schools, how long will it be before teachers instruct their students as follows:
"Ok kids, now before printing your essays make sure to right click on any of the words that are underlined with a red squiggle. You'll then want to choose the word that most likely matches what you were trying to spell. Unlike your iPhones the words do not change all by themselves. I know I know, English sucks. As for the things with green squiggles you can pretty much ignore those. I find it is usually the case that the computer simply doesn't realize that you don't intend to have perfect grammar as met by some 1800's standard of English formed before computers were invented. If I want to start a sentence with an "and" I'm going to. And I'm serious about that! Ok, Jimmy, I can see you're just liyoh so just stop it. You're making everyone around you lol."
For the readers of my blog, I highly suggest reading the above paragraph in the voice of Mr. Mackey. If you don't know who Mr. Mackey is, you should really invest some quality time in an educational program I like to call "South Park". Just my tip for the day.
Now, I wanted to address something very important in this blog: you should most certainly NOT live each day like it was your last. Think about it. Why would this ever strike anyone as a "good" idea? Boom, it's my last day. Am I going to brush my teeth? No. Will I do the laundry? The dishes? Any chores at all? Will I go to work? No, no, no & no! I'd probably eat buckets of Ice Cream while watching non-stop Dr. Who episodes with my wife... but that's just me. My point is that you should live your live as though time is a limited and precious gift that we must not waste. Now I realize I'm suggesting people get more out of life in a motto that takes several more seconds to say, but I think it the end, it is worth it. Pay your bills, go to work, do the laundry & the dishes, but don't forget that one day your time will run out (Did it just get dark in here, or was that just me?) Don't be like me and fail to keep that blog updated just because you were too busy watching episode after episode after episode of Dr. Who with your wife. Ok, never-mind, I take that last part back. I regret nothing about the last several days & weeks of Dr. Who watching with my wife. We've almost caught up watching re-runs in time to start with the all-new season!!! Something you might not have previously known about me? I'm a huge Dr. Who fan/nerd. My iPhone case is a Tardis. Don't know what a Tardis is? Phone me and I will spend half an hour explaining it to you!!!
In other nerd news, I've recently decided to take on the "Lord of the Rings" Trilogy. Thanks to a gentleman by the name of Kevin I will soon be up to do on all things middle-earth and Hobbit related. I have already watched the first part of the first part (if that makes sense?) and look forward to the many parts (and parts of parts) to come!!!
I have much more to blog about, but before I blog all over this computer desk (and make quite a mess in the process) I must post it to the interwebs (otherwise it shall become much like the many many (MANY) post that have never made it to the magical iterwebs as, after writing various entries I have worried about how things sounded and thus never posted them and ultimately they all became obsolete. NO MORE I SAY! From now on I shall try to post what I've got, and worry about whether there is any theme or sense of logic to my post after I post it online.
This one is for you huddled masses and roommates I have never met! CHEERS!
--
Tom
PS: To you masses who are not huddled... you just don't get it do you? In order to be a "mass" you must be in one large group, hence the "huddled" part. You non-huddled masses are just regular people, though I will let you read the above as well.
Tuesday, July 3, 2012
A note on optimism & positive thinking...
Good day to you all!
I just thought it was a good time write a post about positive thinking and optimism. Why? WHY NOT?!?!? There is a common expression that goes something like this: "Some people see their glass as half full, while others see it as half empty" This expression is meant to symbolize one's general outlook on life, given that the same situation can be viewed from two equally correct, though opposite viewpoints (the positive and the negative). Some people tend to be "glass half full" people in that they always look at the good in a situation, while the "glass half empty" will always focus on the negatives the situation offers. I do believe this expression is assumed to involve a glass half filled with water, though in my situation I might make the argument that my glass is half filled with sulphuric acid complete with a stick of trinitrotoluene (TNT) floating around in it, being carried through a crowd of people during an ill-timed candlelight vigil. I might be dramatic, but rest assured my glass is still always half full :)
A few thoughts to share with you that I might have already touched on in past Blog posts. Firstly I have seen first hand that while I might have things "bad", there are so many more people out there who have things worse than I do. I am surrounded by caring loving people who would do anything for me. I have not gone a single day without food or shelter, I have not been abandoned and left to deal with my situation on my own... I have an amazing wife who is there for me on a daily basis, helping me physically and emotionally wherever and whenever I need. I have a job that I find challenging and stimulating in all of the best ways. I may have unfortunately unfavourable odds when it comes to living beyond the five year mark, however the very fact I'm alive to type that sentence into my blog is enough to remind me I should not take such things for granted.
There have been moments in my life when I have been particularly touched. I recall having to read a poem or short story in elementary school around Remembrance Day about young boys growing up in Germany. They moved away and went on with their lives only to both join the army on opposing sides. At the end of the story one brother in battle charges over the trenches and stabs his enemy in the chest with his bayonet. As he looks down he sees the dying man call out "My brother! My brother!" I recall getting choked up at that moment, thinking about the senselessness of war and conflict. I'm not sure this really has to do with optimism or positive thinking, but it was on my mind, and this is my blog... so there!
There was a film that impacted me far more than anything else (including the above story) It was the 1997 Italian film "life is beautiful" starring Roberto Benigni. If you haven't seen it, I highly recommend it. I don't want to spoil the ending in case you haven't watched the movie, but I will say it very much reflects what positive thinking can do, and how looking for ways to find the best in even the worst situations can make a world of difference!
Another moment of reflection finds me going back to a close friend's wedding back on July 31st, 2010 when Tim & Jasmine Zurbriggen were married at the OakBank Baptist Church. At the reception that followed another good friend of mine (a man those of you who were at my wedding will remember as "the guy who gave the most hilarious wedding speech ever" and a man who had the honour of being one of my "Best Men", but you may know better as "Nelson") gave another amazing speech. I'll obviously butcher the details if I try to quote him word-for-word, so I won't. But essentially he said something to the effect of "Try to think of the last time Tim ever said a bad word about anybody". He then left what I can only describe as the most meaningful pause I've ever experienced in my life, and then said... "If you're like me you probably couldn't think of a single time." And so right he was. I could tell by looking around I was not the only one to stop and realize this. It was a moment of pure awe, and a moment I will never forget. I have now, and have always, had much respect for both Tim, and Nelson. I think it takes a special person to live the sort of life Tim has lead in being the amazing person he has always been, but it also takes a special person to see that trait in someone and point it out for all to see. How many of you can honestly say you have not spoken badly about anyone (be it a friend, family member, coworker, or a complete stranger) either to their face or behind their back?
I recall in working my many many days in retail at the one... the only... MCP!!! (greatest store on earth, and "Best Second-Hand Clothing Store" in Winnipeg for 9 consecutive years [when I last worked there as the guy who did the marketing] as voted by the readers of Winnipeg Parent Newsmagazine, that at the end of a long Saturday shift I would remember those customers who really got on my nerves. If someone was particularly rude I would remember that customer at the end of my shift. If someone was particularly kind, I generally let it slip into the generic "things that happened today" part of my brain along with "the colour of shirt that guy I saw in line ahead of me at the Starbucks yesterday"... in other words stuff I will never remember ever again. We need to learn to make a conscious effort to see the positive things that happen around us each and every day, and just as equally, learn to play down those negative events that occur (or try to see the goodness in them). I have found that doing so has made me a far more positive and optimistic person.
I mention this because I believe my positivity and optimism has played a very large role in my dealing with having such a terrible terminal illness. I will continue to keep a positive optimistic outlook on my life & my medical situation in the hopes it helps me in whatever way possible. It can't hurt afterall now can it?
This blog post was somewhat rambling and lacking a solid coherent theme... But they say "Do what you know best", and anyone who knows me knows I know my incoherent endless rambling!!! Hope you all have a good day eh? Cheers!
--
Tom
I just thought it was a good time write a post about positive thinking and optimism. Why? WHY NOT?!?!? There is a common expression that goes something like this: "Some people see their glass as half full, while others see it as half empty" This expression is meant to symbolize one's general outlook on life, given that the same situation can be viewed from two equally correct, though opposite viewpoints (the positive and the negative). Some people tend to be "glass half full" people in that they always look at the good in a situation, while the "glass half empty" will always focus on the negatives the situation offers. I do believe this expression is assumed to involve a glass half filled with water, though in my situation I might make the argument that my glass is half filled with sulphuric acid complete with a stick of trinitrotoluene (TNT) floating around in it, being carried through a crowd of people during an ill-timed candlelight vigil. I might be dramatic, but rest assured my glass is still always half full :)
A few thoughts to share with you that I might have already touched on in past Blog posts. Firstly I have seen first hand that while I might have things "bad", there are so many more people out there who have things worse than I do. I am surrounded by caring loving people who would do anything for me. I have not gone a single day without food or shelter, I have not been abandoned and left to deal with my situation on my own... I have an amazing wife who is there for me on a daily basis, helping me physically and emotionally wherever and whenever I need. I have a job that I find challenging and stimulating in all of the best ways. I may have unfortunately unfavourable odds when it comes to living beyond the five year mark, however the very fact I'm alive to type that sentence into my blog is enough to remind me I should not take such things for granted.
There have been moments in my life when I have been particularly touched. I recall having to read a poem or short story in elementary school around Remembrance Day about young boys growing up in Germany. They moved away and went on with their lives only to both join the army on opposing sides. At the end of the story one brother in battle charges over the trenches and stabs his enemy in the chest with his bayonet. As he looks down he sees the dying man call out "My brother! My brother!" I recall getting choked up at that moment, thinking about the senselessness of war and conflict. I'm not sure this really has to do with optimism or positive thinking, but it was on my mind, and this is my blog... so there!
There was a film that impacted me far more than anything else (including the above story) It was the 1997 Italian film "life is beautiful" starring Roberto Benigni. If you haven't seen it, I highly recommend it. I don't want to spoil the ending in case you haven't watched the movie, but I will say it very much reflects what positive thinking can do, and how looking for ways to find the best in even the worst situations can make a world of difference!
Another moment of reflection finds me going back to a close friend's wedding back on July 31st, 2010 when Tim & Jasmine Zurbriggen were married at the OakBank Baptist Church. At the reception that followed another good friend of mine (a man those of you who were at my wedding will remember as "the guy who gave the most hilarious wedding speech ever" and a man who had the honour of being one of my "Best Men", but you may know better as "Nelson") gave another amazing speech. I'll obviously butcher the details if I try to quote him word-for-word, so I won't. But essentially he said something to the effect of "Try to think of the last time Tim ever said a bad word about anybody". He then left what I can only describe as the most meaningful pause I've ever experienced in my life, and then said... "If you're like me you probably couldn't think of a single time." And so right he was. I could tell by looking around I was not the only one to stop and realize this. It was a moment of pure awe, and a moment I will never forget. I have now, and have always, had much respect for both Tim, and Nelson. I think it takes a special person to live the sort of life Tim has lead in being the amazing person he has always been, but it also takes a special person to see that trait in someone and point it out for all to see. How many of you can honestly say you have not spoken badly about anyone (be it a friend, family member, coworker, or a complete stranger) either to their face or behind their back?
I recall in working my many many days in retail at the one... the only... MCP!!! (greatest store on earth, and "Best Second-Hand Clothing Store" in Winnipeg for 9 consecutive years [when I last worked there as the guy who did the marketing] as voted by the readers of Winnipeg Parent Newsmagazine, that at the end of a long Saturday shift I would remember those customers who really got on my nerves. If someone was particularly rude I would remember that customer at the end of my shift. If someone was particularly kind, I generally let it slip into the generic "things that happened today" part of my brain along with "the colour of shirt that guy I saw in line ahead of me at the Starbucks yesterday"... in other words stuff I will never remember ever again. We need to learn to make a conscious effort to see the positive things that happen around us each and every day, and just as equally, learn to play down those negative events that occur (or try to see the goodness in them). I have found that doing so has made me a far more positive and optimistic person.
I mention this because I believe my positivity and optimism has played a very large role in my dealing with having such a terrible terminal illness. I will continue to keep a positive optimistic outlook on my life & my medical situation in the hopes it helps me in whatever way possible. It can't hurt afterall now can it?
This blog post was somewhat rambling and lacking a solid coherent theme... But they say "Do what you know best", and anyone who knows me knows I know my incoherent endless rambling!!! Hope you all have a good day eh? Cheers!
--
Tom
Sunday, July 1, 2012
Best Day Ever!!!
...then again, there was that day I was married. Okay, second best day ever!
It would be fair to say my wife Nicole & I have had our share of "bad news" & "tough times" over the past couple of years. Things don't generally tend to "go well" for us. 50% of us have a terminal illness, our vehicles tend to end up written off or falling apart on us...
RIP: Nicole's '94 (Literally flooded while parked in front of my Mom's house in Transcona)
RIP: Tom's '00 Hyundai Tiburon (Pretty much rusted away / fell apart on me)
RIP: Steve & Pat's '02 Chrysler Concorde (Taken out by an errant driver on Corydon)
...etc., etc., (please read former posts for more).
When we have a day when things don't go badly, we consider it to be an amazing day. When things go well, we nearly have heart attacks while running around with excitement laughing aloud with glee. If I go shopping and cashier forgets to charge me for an item, I nearly wet myself... that's all I'm saying. Well, today I should have been wearing a diaper because IT WAS AN AWESOME AWESOME DAY!!! This whole weekend has been pretty darn good, likely a direct result of it having been my wife's birthday on the 29th. She must have emanated "birthday luck". That is the only logical explanation. We went to her parents' on her actual birthday after a day of running around and just "being regular people". Okay, not really, as we had my blood work appointment at the HSC at 9:30 am, and my monthly "exam" (which is pretty much just a day to weigh me, and give me my next month's medication calendar and speak to a nurse... this last visit was "71 kg, no seizures since last time, see you in a month"). After that we started our day of "being normal". We hit up George's (Burgers & Subs) for a breakfast special, where Nic's eggs were a little runny. Keep in mind that they were still eggs. The fact that the plate didn't come out with a chicken fighting a gopher on it means we were still on track for a good day. Even when we went to Starbucks and her green tea frappuccino had waxy bits of chocolate mixed in (obviously from the last drink they made) it was made out of mostly what she ordered, which for us is amazing. The evening at her parents' was fantastic (as always) as Steve made more food than any of us could eat if someone forced us to with threat of physical harm. Jen may have had raw meat thrown in her face by her fiancé, but Nic & I officially had NO RAW MEAT thrown at us!!! (clearly this was a great weekend already)
Nic enjoyed her gifts and we went home for a good night's sleep. The next day we got to SLEEP IN!!! It got even better for me when my wife (who should have been celebrating her day after birthday, woke up before me and made me pancakes with fresh fruit which she then brought me IN BED along with a hot cup of coffee. Paradise. She puts up with my bad jokes and brings me breakfast in bed? I married the right girl :)
Afternoon saw us go to the Farmer's Market in St. Norbert. Just being able to walk around with my wife in the nice afternoon sun without having a seizure or facing any other medical issue was a real joy. There was an ambulance and firetruck that arrived to help someone else in need (as if to point out "this is usually you guys!")... though I hope the other people were not in any serious harm.
A quick stop off at Winners was enough to cap off our excursion, as we headed back to our apartment. We were incredibly productive... getting laundry done, sorting through bins and boxes that someone (unbelievably one might say) that we STILL have not unpacked since moving to our current "home" in late April of this year. I think we only have 10-15 of such boxes & bins to unpack before we can remove the quotation marks and call it a home! Then we can invite family & friends over without having to say "this is where we almost live!"
In our productive bin/box unpacking Nicole came across a lottery scratch ticket that had never been scratched. Again, the fact that it wasn't an envelope filled with anthrax would have been enough to keep me happy, but an unscratched lottery ticket? It had to be too good to be true. I told my lovely wife that it was probably expired and to check the date. The ticket expired TODAY!!! Ok, I could feel my body pulsing and adrenalin pulsing through my body. After scratching the ticket... it couldn't be... double check it... YES! IT WAS A $3 WINNER!!! I nearly had a heart attack while peeing my pants! We had to cash it in by the end of the night or it became a worthless piece of paper. So, we found a wonderful convenience store that is sure to be a hit. It was called Seven Eleven, though I'm not sure why the name (I can only assume it is meant to reflect the class of the joint, much as the name "529 Wellington" does). The well dressed Seven Eleven "customer service representative" scanned my ticket, and the screen above him shouted "WHOO HOO!" as the word "WINNER!" appeared just above the "$3.00 payout" line. This was the best day I had had in... well probably since my wedding. I raced to the car where my day-after-her-birthday-girl was waiting for me. It was time to treat her to a proper meal. I took her to Sydney's at the Forks, where (after taxes and gratuities) we had a meal that went over the $3.00 we had won. It was well worth it, as the food was simply amazing. Not that I'm saying it in any way compares to the food one might enjoy at any WOW! Hospitality Concepts restaurant, but it was certainly up there. After our four course meal we enjoyed a nice walk along the river walk where we were not stabbed or mugged or even bitten alive by mosquitoes! Surely this was a dream. If so I'm still dreaming, because it hasn't ended yet.
We went to the Casino's of Winnipeg "Club Regent" (named as such because of it's close proximity to the "Regent Mohawk" I can only assume). I had been mailed out a card notifying me that I had been awarded $10.00 of "Gold Play" to use by a certain date. Since we had overshot our lottery ticket winnings on our meal, we figured the best place to come to make up the difference would be the casino (pretty much a no-brainer), and with a free $10.00 to burn through, how could we go wrong?
After walking around a casino we clearly had not been to in a while (as EVERYTHING THERE IS DIFFERENT NOW!) Except the fish tank that is, as I suppose that would be hard to move. They'd even upgraded the free coffee/hot chocolate/mocha dispensers... so we had already won. Putting in my player's card into a $0.01 slot machine of Nicole's choice we proceeded to put in $5.00 CAD to try to figure out how to access my $10.00 of "Gold Play". The machine was not as simple as we might have thought, as we had not taken any courses in University that covered the operations of slot machines. After losing the $4.90, and being no closer to figuring out how to use our $10.00, we decided to cash out. Pressing the cash out button lead to an interesting course of events...
The machine did not "cash us out". Instead it made a lot of annoying sounds and did a whole lot of nothing. We pressed the "CALL HELP" button (button may or may not have specifically said "CALL HELP"), and waited for an attendant to arrive. After some time one did walk by clearly unaware of our situation. I flagged him down and he came to service our machine. After 10 minutes of clearly having no idea what he was doing, he called for help. After 10 minutes the help came, only 5 minutes after the Help gave up, she called in what I can only assume was the Backup Help. Backup Help managed to reach in and remove our "cash out slip" which had simply been jammed in the machine. We now had our $0.10 cash out slip and the WORLD WAS OURS!!!!
I asked Nicole which machine to choose next, and she said that having waited so long on that machine, it was pretty much ours, and we should just wait for Backup Help to put it back together. Upon regaining the machine Nicole took her Birthday Luck and went to town. Lights & Music & Sounds OH MY!!! She worked it up to a nice $65 (okay, $64.90... but who's counting?), which was all based upon having put in a $20.00 bill and using only the $10.00 free "Gold Play" (Meaning we had won $45.00!!!). We cashed out our ticket without issue and took it to the cash out machines. There was one free on the left side, which Nicole put our cash out slip in to and a few seconds later the machine was giving us a combination of paper and metal money that added up to $60.90, a mere $4.00 short of the $64.90 that we had actually won. I grabbed an attendant (Not physically! I don't know why you think I would do that. I'm not a violent person) and she opened up the machine. After looking over it and seeing no reason why our $4.00 never came to be she called her Help (though not the same Help as we first encountered). The two of them eventually found out that the $1.00 dispenser within the machine had jammed and actually had what looked to be around 10 unclaimed loonies stuck in it. The Help handed me my $4.00 and we were off!!!
It is about 2:00 in the morning, and I have five times promised my wife that I'll "only be 5 more minutes", so I think I should actually go to bed, being that it has been over an hour since I first started promising such. I just wanted you (the world) to know that Nicole & I had an AWESOME DAY in which we broke not one, but two Casino machines, found an old unscratched scratch ticked... which was a winner... on the last day it could be claimed, and weren't both killed by bears!!!
Hard to believe even for me, but I was there and saw it happen. If this trend continues tomorrow my incurable brain cancer will be cured. One can never give up hope, even if that hope is a single electron in a single atom of a single molecule of aluminum in a single needle of a single haystack, assuming that haystack was the size of the entire known universe. I might even buy a lotto 649 ticket tomorrow???
Cheers everyone!!!! & HAPPY CANADA DAY :)
PS: There is no way I'm proofreading the above, being that it has been 12 minutes since I said I would stop.
It would be fair to say my wife Nicole & I have had our share of "bad news" & "tough times" over the past couple of years. Things don't generally tend to "go well" for us. 50% of us have a terminal illness, our vehicles tend to end up written off or falling apart on us...
RIP: Nicole's '94 (Literally flooded while parked in front of my Mom's house in Transcona)
RIP: Tom's '00 Hyundai Tiburon (Pretty much rusted away / fell apart on me)
RIP: Steve & Pat's '02 Chrysler Concorde (Taken out by an errant driver on Corydon)
...etc., etc., (please read former posts for more).
When we have a day when things don't go badly, we consider it to be an amazing day. When things go well, we nearly have heart attacks while running around with excitement laughing aloud with glee. If I go shopping and cashier forgets to charge me for an item, I nearly wet myself... that's all I'm saying. Well, today I should have been wearing a diaper because IT WAS AN AWESOME AWESOME DAY!!! This whole weekend has been pretty darn good, likely a direct result of it having been my wife's birthday on the 29th. She must have emanated "birthday luck". That is the only logical explanation. We went to her parents' on her actual birthday after a day of running around and just "being regular people". Okay, not really, as we had my blood work appointment at the HSC at 9:30 am, and my monthly "exam" (which is pretty much just a day to weigh me, and give me my next month's medication calendar and speak to a nurse... this last visit was "71 kg, no seizures since last time, see you in a month"). After that we started our day of "being normal". We hit up George's (Burgers & Subs) for a breakfast special, where Nic's eggs were a little runny. Keep in mind that they were still eggs. The fact that the plate didn't come out with a chicken fighting a gopher on it means we were still on track for a good day. Even when we went to Starbucks and her green tea frappuccino had waxy bits of chocolate mixed in (obviously from the last drink they made) it was made out of mostly what she ordered, which for us is amazing. The evening at her parents' was fantastic (as always) as Steve made more food than any of us could eat if someone forced us to with threat of physical harm. Jen may have had raw meat thrown in her face by her fiancé, but Nic & I officially had NO RAW MEAT thrown at us!!! (clearly this was a great weekend already)
Nic enjoyed her gifts and we went home for a good night's sleep. The next day we got to SLEEP IN!!! It got even better for me when my wife (who should have been celebrating her day after birthday, woke up before me and made me pancakes with fresh fruit which she then brought me IN BED along with a hot cup of coffee. Paradise. She puts up with my bad jokes and brings me breakfast in bed? I married the right girl :)
Afternoon saw us go to the Farmer's Market in St. Norbert. Just being able to walk around with my wife in the nice afternoon sun without having a seizure or facing any other medical issue was a real joy. There was an ambulance and firetruck that arrived to help someone else in need (as if to point out "this is usually you guys!")... though I hope the other people were not in any serious harm.
A quick stop off at Winners was enough to cap off our excursion, as we headed back to our apartment. We were incredibly productive... getting laundry done, sorting through bins and boxes that someone (unbelievably one might say) that we STILL have not unpacked since moving to our current "home" in late April of this year. I think we only have 10-15 of such boxes & bins to unpack before we can remove the quotation marks and call it a home! Then we can invite family & friends over without having to say "this is where we almost live!"
In our productive bin/box unpacking Nicole came across a lottery scratch ticket that had never been scratched. Again, the fact that it wasn't an envelope filled with anthrax would have been enough to keep me happy, but an unscratched lottery ticket? It had to be too good to be true. I told my lovely wife that it was probably expired and to check the date. The ticket expired TODAY!!! Ok, I could feel my body pulsing and adrenalin pulsing through my body. After scratching the ticket... it couldn't be... double check it... YES! IT WAS A $3 WINNER!!! I nearly had a heart attack while peeing my pants! We had to cash it in by the end of the night or it became a worthless piece of paper. So, we found a wonderful convenience store that is sure to be a hit. It was called Seven Eleven, though I'm not sure why the name (I can only assume it is meant to reflect the class of the joint, much as the name "529 Wellington" does). The well dressed Seven Eleven "customer service representative" scanned my ticket, and the screen above him shouted "WHOO HOO!" as the word "WINNER!" appeared just above the "$3.00 payout" line. This was the best day I had had in... well probably since my wedding. I raced to the car where my day-after-her-birthday-girl was waiting for me. It was time to treat her to a proper meal. I took her to Sydney's at the Forks, where (after taxes and gratuities) we had a meal that went over the $3.00 we had won. It was well worth it, as the food was simply amazing. Not that I'm saying it in any way compares to the food one might enjoy at any WOW! Hospitality Concepts restaurant, but it was certainly up there. After our four course meal we enjoyed a nice walk along the river walk where we were not stabbed or mugged or even bitten alive by mosquitoes! Surely this was a dream. If so I'm still dreaming, because it hasn't ended yet.
We went to the Casino's of Winnipeg "Club Regent" (named as such because of it's close proximity to the "Regent Mohawk" I can only assume). I had been mailed out a card notifying me that I had been awarded $10.00 of "Gold Play" to use by a certain date. Since we had overshot our lottery ticket winnings on our meal, we figured the best place to come to make up the difference would be the casino (pretty much a no-brainer), and with a free $10.00 to burn through, how could we go wrong?
After walking around a casino we clearly had not been to in a while (as EVERYTHING THERE IS DIFFERENT NOW!) Except the fish tank that is, as I suppose that would be hard to move. They'd even upgraded the free coffee/hot chocolate/mocha dispensers... so we had already won. Putting in my player's card into a $0.01 slot machine of Nicole's choice we proceeded to put in $5.00 CAD to try to figure out how to access my $10.00 of "Gold Play". The machine was not as simple as we might have thought, as we had not taken any courses in University that covered the operations of slot machines. After losing the $4.90, and being no closer to figuring out how to use our $10.00, we decided to cash out. Pressing the cash out button lead to an interesting course of events...
The machine did not "cash us out". Instead it made a lot of annoying sounds and did a whole lot of nothing. We pressed the "CALL HELP" button (button may or may not have specifically said "CALL HELP"), and waited for an attendant to arrive. After some time one did walk by clearly unaware of our situation. I flagged him down and he came to service our machine. After 10 minutes of clearly having no idea what he was doing, he called for help. After 10 minutes the help came, only 5 minutes after the Help gave up, she called in what I can only assume was the Backup Help. Backup Help managed to reach in and remove our "cash out slip" which had simply been jammed in the machine. We now had our $0.10 cash out slip and the WORLD WAS OURS!!!!
I asked Nicole which machine to choose next, and she said that having waited so long on that machine, it was pretty much ours, and we should just wait for Backup Help to put it back together. Upon regaining the machine Nicole took her Birthday Luck and went to town. Lights & Music & Sounds OH MY!!! She worked it up to a nice $65 (okay, $64.90... but who's counting?), which was all based upon having put in a $20.00 bill and using only the $10.00 free "Gold Play" (Meaning we had won $45.00!!!). We cashed out our ticket without issue and took it to the cash out machines. There was one free on the left side, which Nicole put our cash out slip in to and a few seconds later the machine was giving us a combination of paper and metal money that added up to $60.90, a mere $4.00 short of the $64.90 that we had actually won. I grabbed an attendant (Not physically! I don't know why you think I would do that. I'm not a violent person) and she opened up the machine. After looking over it and seeing no reason why our $4.00 never came to be she called her Help (though not the same Help as we first encountered). The two of them eventually found out that the $1.00 dispenser within the machine had jammed and actually had what looked to be around 10 unclaimed loonies stuck in it. The Help handed me my $4.00 and we were off!!!
It is about 2:00 in the morning, and I have five times promised my wife that I'll "only be 5 more minutes", so I think I should actually go to bed, being that it has been over an hour since I first started promising such. I just wanted you (the world) to know that Nicole & I had an AWESOME DAY in which we broke not one, but two Casino machines, found an old unscratched scratch ticked... which was a winner... on the last day it could be claimed, and weren't both killed by bears!!!
Hard to believe even for me, but I was there and saw it happen. If this trend continues tomorrow my incurable brain cancer will be cured. One can never give up hope, even if that hope is a single electron in a single atom of a single molecule of aluminum in a single needle of a single haystack, assuming that haystack was the size of the entire known universe. I might even buy a lotto 649 ticket tomorrow???
Cheers everyone!!!! & HAPPY CANADA DAY :)
PS: There is no way I'm proofreading the above, being that it has been 12 minutes since I said I would stop.
Thursday, June 21, 2012
It's been a while eh?
DISCLAIMER: I wrote the below some time ago (Sunday June 10th to be exact), so some of my references may already be out of date. I guess I was too tired to hit "post" at the end of it. Nonetheless I present it to you now, complete with extra CHEERS! See? I'll do it again... CHEERS! That was worth the wait now wasn't it? I think so. Cheers to ye all eh?
--
Tom
So most of you probably thought I'd dropped dead long ago, but guess what??? I'M STILL HERE!!! Turns out I'm just lazy! That and life seems to still be keeping me busy (what with all the taking of the pills and all). I'm thirsty, so I'm going to get myself a glass of cold water... BRB! {I've been told by "the youth" that "BRB" is a clever abbreviation for the phrase "be right back". Someone else told me it was the ISO 3166-1 three-letter (alpha-3) code for Barbados, but they were a computer nerd and thus not to be trusted in knowing modern slang}.
Ahhhh... Very nice. So where were we? Oh right... Acronyms, lol... jk ;)
Always good to start with the medical updates right? Am I still alive? I think by writing this very sentence I have indirectly answered your question. How am I doing? Wow you ask a lot of questions! Doing quite well actually. I'd complain about the chemo and how it has made me feel ill over these last few days, but the fact that I'm here and actually able to complain about it... reminds me that I really shouldn't complain about it. I was nauseous and ill this past round of chemo (with today being day 5 of 5... yay!), however my wife/doctor/nurse/bestfriend/chauffeur/consultant/nutritionist/green-loving-significant-other thinks that may have had something [more] to do with me giving myself food poisoning. She might be on to something there. Nicole and I have come up with some "rules" which are really a list of things to do in order to "stay alive". Among these are to:
i) always take my pills
ii) always take my pills on time
iii) always eat PROPER meals on time (with pills where appropriate)
iv) never leave the apartment in the morning without having fulfilled the above three points
Being on day #2 of chemo I managed to break those rules. I did take my Ondansetron (anti-nausea pills), as well as my Temozolomide (chemo meds), however in running late for work, I simply grabbed my "other" pills (Dexamethasone, Phenytoin, Valproic acid, and Ranitidine) and hit the road. For me "hit the road" means crossing the street to the good ol' #50513 Bus Stop to wait for my #55 or #59 to take me to work. Don't know if I told y'all, but I'm pretty much the king of the Winnipeg Transit System. I'm so good I rarely get lost getting to/from work these days. I got to take the Rapid Transit the other day! Turns out it's just a road that only busses go on. It's not that long, and I don't really see the point of it all. Is it cool? I guess. Is it $138 million cool? I'm not so sure. But I digress...
My rush to leave in the morning meant I missed the last bus that would get me to work on time (for 9:00 am). My next best alternative was to use my Winnipeg Transit App Combo Pack (which is nothing more than three or four free or really cheap apps I downloaded for my iPhone to calculate routes, find stops, and see when busses will be arriving). My best alternative route to work had me dropped off in front of a Burger King at Osborne Junction. I learned that "Osborne Junction" is really just another name for "Confusion Corner" adding to my confusion about that particular intersection. I saw an ad on the BK window that read "TWO ORIGINAL CHICKEN SANDWICHES $5!" and thought... hells ya!
This is where my mistake(s) began. I've been told by my wife that the "chicken" in the name "chicken sandwich" could be considered something between "massively deceptive" and "false advertising". It really didn't taste all that great (after eating only the healthiest of foods for well over a year, I guess my body was unprepared for the low quality food of a "2 for $5" deal at Burger King for breakfast. The chemo I'm on technically poisons all of the cells in my body while trying to focus primarily on the brain tumour cells. Nicole explained to me that the 2 OCS's could be considered a "poison for my body that make no differentiation between tumour and regular cells". My second mistake turned out to be keeping my second (uneaten) OCS in my backpack in the office (which was quite warm on this 30 degree day), very unrefrigerated. Mid-afternoon I went into my backpack for my cell phone charger only to find my uneaten OCS! To throw it out would have been a waste (ignoring all principles of "sunk cost" I learned in Economics 101), and did the only logical thing... and ate it. Nicole then had to explain to me that "mayonnaise" is made out of eggs which don't tend to keep well in warm climates over long periods of time, and that our bodies don't tend to react well to having this (along with "fake chicken") in our stomaches while already suffering the effects of being on chemotherapy. This is probably why I found myself with my head in a pail around 8pm this past Thursday. I have promised my loving wife that I will never again eat an Original (or in fact ANY) Chicken Sandwich from Burger King, and that furthermore I will stick to our "rules" in the aim of keeping me alive. Once again... my apologies love, and thanks for looking after & out-for me :)
Another update... WE HAVE A CAR!!! Those of you who don't talk to us regularly might not know we've been sans car for quite a while. Way back in the fall of 2010 my sweet sweet Hyundai Tiburon (Tim would surely agree) was falling apart. It would have been an issue had I remained healthy and in need of a car. As luck would have it, I was diagnosed with a terminal illness! That and the following seizures meant I would have no need for a car! It's what we call a "silver lining" (or what the casual reader might call a "twisted sense of humour"). Meanwhile Nicole managed to see her Honda Accord flooded and written off in the months prior to all of this. He parents (also known as my "in-laws"), who happen to be wonderful fantastical people!, lent her their Chrysler Concorde (a vehicle we liked to call "the boat"... I assume because of its submersible nature?) as they had just upgraded to a life of luxury in their new Lincoln MKZ. The Concorde would remain in our possession until a lady driving down corydon decided the car was far to undamaged and thus drove her car into the side of it when Nicole was on her way to pick me up from work, causing around $4,000 worth of damage to the car. This meant we were once again out of a vehicle. I'll gloss over the fun time of MPI deciding the car was a write-off, then changing their mind and wanting us to fix it for a lower cost, and then changing their mind and paying out the value of the damage on the car. Nicole's parents with their ESP decided to upgrade their truck in advance of this event. This meant that when the Concorde (that belonged to Nicole's parents) was written-off they were attempting to sell their Ford F150 Pickup Truck. Given that they are ridiculously and inexplicably nice to us, they lent us their truck while we searched for a new vehicle. One would question them on such a decision given our track record with vehicles and keeping them in an un-written-off state.
I could write a whole blog entry on the "fun" process of trying to buy a used car, and perhaps I will soon enough, but it is enough for me to say that we have finally found one from a reasonable person for a decent price, and so for the first time in well over a year Nicole and I are driving our very own car! Provided I can stop having my damn seizures I'll be able to drive it on the road!!! Nicole was kind enough to supervise me while I took it for a spin around a parking lot... it is a NICE car!!! What kind you ask? Again with the questions!?! It's a 2008 Ford Fusion. What colour? Do you not know my wife? It's green (of course). I should put a disclaimer that it's not as though Nicole is some unreasonable person who restricts my freedoms by keeping me from the joys of life, such as driving a new (preowned) vehicle on the road. Such is a decision I have made for a few reasons.
#1) I'm not spending all of my hard work & energy (and your taxpayer dollars... thank you Pharmacare & Today's NDP!) fighting terminal brain cancer, just to have a seizure while driving and get killed in a terrible automobile accident.
#2) Nicole is always with me, and so the choice between someone prone to seizures and someone who has never had one, the choice is clear.
#3) I really don't want to kill anyone else on the road, or even some poor innocent bunny. Just because it can't perceive the dangers of pavement that is decorated with those white and yellow lines, and my brain has neurones firing off in an abnormal and frequent fashion does not mean it deserves to die.
So both Nicole and I would love it if I could still drive, however we both realize the practical and moral obligations as good citizens.
--
Tom
So most of you probably thought I'd dropped dead long ago, but guess what??? I'M STILL HERE!!! Turns out I'm just lazy! That and life seems to still be keeping me busy (what with all the taking of the pills and all). I'm thirsty, so I'm going to get myself a glass of cold water... BRB! {I've been told by "the youth" that "BRB" is a clever abbreviation for the phrase "be right back". Someone else told me it was the ISO 3166-1 three-letter (alpha-3) code for Barbados, but they were a computer nerd and thus not to be trusted in knowing modern slang}.
Ahhhh... Very nice. So where were we? Oh right... Acronyms, lol... jk ;)
Always good to start with the medical updates right? Am I still alive? I think by writing this very sentence I have indirectly answered your question. How am I doing? Wow you ask a lot of questions! Doing quite well actually. I'd complain about the chemo and how it has made me feel ill over these last few days, but the fact that I'm here and actually able to complain about it... reminds me that I really shouldn't complain about it. I was nauseous and ill this past round of chemo (with today being day 5 of 5... yay!), however my wife/doctor/nurse/bestfriend/chauffeur/consultant/nutritionist/green-loving-significant-other thinks that may have had something [more] to do with me giving myself food poisoning. She might be on to something there. Nicole and I have come up with some "rules" which are really a list of things to do in order to "stay alive". Among these are to:
i) always take my pills
ii) always take my pills on time
iii) always eat PROPER meals on time (with pills where appropriate)
iv) never leave the apartment in the morning without having fulfilled the above three points
Being on day #2 of chemo I managed to break those rules. I did take my Ondansetron (anti-nausea pills), as well as my Temozolomide (chemo meds), however in running late for work, I simply grabbed my "other" pills (Dexamethasone, Phenytoin, Valproic acid, and Ranitidine) and hit the road. For me "hit the road" means crossing the street to the good ol' #50513 Bus Stop to wait for my #55 or #59 to take me to work. Don't know if I told y'all, but I'm pretty much the king of the Winnipeg Transit System. I'm so good I rarely get lost getting to/from work these days. I got to take the Rapid Transit the other day! Turns out it's just a road that only busses go on. It's not that long, and I don't really see the point of it all. Is it cool? I guess. Is it $138 million cool? I'm not so sure. But I digress...
My rush to leave in the morning meant I missed the last bus that would get me to work on time (for 9:00 am). My next best alternative was to use my Winnipeg Transit App Combo Pack (which is nothing more than three or four free or really cheap apps I downloaded for my iPhone to calculate routes, find stops, and see when busses will be arriving). My best alternative route to work had me dropped off in front of a Burger King at Osborne Junction. I learned that "Osborne Junction" is really just another name for "Confusion Corner" adding to my confusion about that particular intersection. I saw an ad on the BK window that read "TWO ORIGINAL CHICKEN SANDWICHES $5!" and thought... hells ya!
This is where my mistake(s) began. I've been told by my wife that the "chicken" in the name "chicken sandwich" could be considered something between "massively deceptive" and "false advertising". It really didn't taste all that great (after eating only the healthiest of foods for well over a year, I guess my body was unprepared for the low quality food of a "2 for $5" deal at Burger King for breakfast. The chemo I'm on technically poisons all of the cells in my body while trying to focus primarily on the brain tumour cells. Nicole explained to me that the 2 OCS's could be considered a "poison for my body that make no differentiation between tumour and regular cells". My second mistake turned out to be keeping my second (uneaten) OCS in my backpack in the office (which was quite warm on this 30 degree day), very unrefrigerated. Mid-afternoon I went into my backpack for my cell phone charger only to find my uneaten OCS! To throw it out would have been a waste (ignoring all principles of "sunk cost" I learned in Economics 101), and did the only logical thing... and ate it. Nicole then had to explain to me that "mayonnaise" is made out of eggs which don't tend to keep well in warm climates over long periods of time, and that our bodies don't tend to react well to having this (along with "fake chicken") in our stomaches while already suffering the effects of being on chemotherapy. This is probably why I found myself with my head in a pail around 8pm this past Thursday. I have promised my loving wife that I will never again eat an Original (or in fact ANY) Chicken Sandwich from Burger King, and that furthermore I will stick to our "rules" in the aim of keeping me alive. Once again... my apologies love, and thanks for looking after & out-for me :)
Another update... WE HAVE A CAR!!! Those of you who don't talk to us regularly might not know we've been sans car for quite a while. Way back in the fall of 2010 my sweet sweet Hyundai Tiburon (Tim would surely agree) was falling apart. It would have been an issue had I remained healthy and in need of a car. As luck would have it, I was diagnosed with a terminal illness! That and the following seizures meant I would have no need for a car! It's what we call a "silver lining" (or what the casual reader might call a "twisted sense of humour"). Meanwhile Nicole managed to see her Honda Accord flooded and written off in the months prior to all of this. He parents (also known as my "in-laws"), who happen to be wonderful fantastical people!, lent her their Chrysler Concorde (a vehicle we liked to call "the boat"... I assume because of its submersible nature?) as they had just upgraded to a life of luxury in their new Lincoln MKZ. The Concorde would remain in our possession until a lady driving down corydon decided the car was far to undamaged and thus drove her car into the side of it when Nicole was on her way to pick me up from work, causing around $4,000 worth of damage to the car. This meant we were once again out of a vehicle. I'll gloss over the fun time of MPI deciding the car was a write-off, then changing their mind and wanting us to fix it for a lower cost, and then changing their mind and paying out the value of the damage on the car. Nicole's parents with their ESP decided to upgrade their truck in advance of this event. This meant that when the Concorde (that belonged to Nicole's parents) was written-off they were attempting to sell their Ford F150 Pickup Truck. Given that they are ridiculously and inexplicably nice to us, they lent us their truck while we searched for a new vehicle. One would question them on such a decision given our track record with vehicles and keeping them in an un-written-off state.
I could write a whole blog entry on the "fun" process of trying to buy a used car, and perhaps I will soon enough, but it is enough for me to say that we have finally found one from a reasonable person for a decent price, and so for the first time in well over a year Nicole and I are driving our very own car! Provided I can stop having my damn seizures I'll be able to drive it on the road!!! Nicole was kind enough to supervise me while I took it for a spin around a parking lot... it is a NICE car!!! What kind you ask? Again with the questions!?! It's a 2008 Ford Fusion. What colour? Do you not know my wife? It's green (of course). I should put a disclaimer that it's not as though Nicole is some unreasonable person who restricts my freedoms by keeping me from the joys of life, such as driving a new (preowned) vehicle on the road. Such is a decision I have made for a few reasons.
#1) I'm not spending all of my hard work & energy (and your taxpayer dollars... thank you Pharmacare & Today's NDP!) fighting terminal brain cancer, just to have a seizure while driving and get killed in a terrible automobile accident.
#2) Nicole is always with me, and so the choice between someone prone to seizures and someone who has never had one, the choice is clear.
#3) I really don't want to kill anyone else on the road, or even some poor innocent bunny. Just because it can't perceive the dangers of pavement that is decorated with those white and yellow lines, and my brain has neurones firing off in an abnormal and frequent fashion does not mean it deserves to die.
So both Nicole and I would love it if I could still drive, however we both realize the practical and moral obligations as good citizens.
Friday, May 4, 2012
MRI Results
MRI scan showed no growth. This is not bad news. Not bad news = good news. Good news = happy Tom. See? --> :)
Saturday, April 14, 2012
I still write a blog?
Last published on February 17th eh? That seems like a while ago. Just in case you were a regular reader and thought the lack of posting meant I was dead, good news... I'M NOT!!! :)
So what caused my disappearance from the blogoshpere? Life! You see in December of 2010 I was essentially told I had a year to live (if that) and so it made little sense to put in a full 9-5 trying to earning a living just to pay the bills. What made more sense was saying "Why not do whatever the heck I want for the next 12 months eh?" So I got married to the girl I love and we went on a few trips (of varied success), I took a train out to beautiful BC, crossed the Capilano Suspension Bridge (despite my massive fear of heights). Went to the top of the Seattle Space Needle, shopped for some new clothes & shoes, and tempted a Mexican resort known for exploding! Then December 2011 came. I was told I was doing quite well and that the new "plan" was to continue on the current chemotherapy treatments and reassess the situation in one year from that point. At that point you ask yourself "Ok, so now that I've taken a year off from "life" just doing whatever, what do I do now?" The answer for me might seem odd to some, but I just wanted to get back to the 9-5. I always enjoyed work anyways, and the bills still needed to be paid. In addition I felt like a return to a "normal" life (or something close to it) was the best way to be happy and maybe live as though I was going to for quite some time (beyond December 2011). Here it is April 2012 and I'm like the Energizer Bunny®!
The plan medically is the same as always "Keep going and see how things turn out" with a "fingers crossed" undertone. My next MRI is April 23rd, with results to come early May. As per always that means stress and anxiety for the wife and I until then, and though you might think one would get used to that sort of thing by now, somehow you never truly do.
On a life story note, Nicole & I have decided to get the heck out of our current apartment complex (c/w noisy neighbours, dimly lit halls, poor air circulation, and expensive laundry machines a ways down the hall) for a new complex featuring an elevator, fresh air circulation, brightly lit hallways, in-suite laundry, and best of all, the complex is inhabited over 65% by senior citizens... SO I'LL FIT RIGHT IN!!! I can meet with George from down the hall and swap stories about the pharmacy technicians, healthy eating tips, and "those damned kids these days". It should be fun!
Once we are moved in and have the internet all transferred over I'll try to post a quick update to say "we're in and still doing adequately well!" Till then, Cheers ALL!!!
--
Tom
So what caused my disappearance from the blogoshpere? Life! You see in December of 2010 I was essentially told I had a year to live (if that) and so it made little sense to put in a full 9-5 trying to earning a living just to pay the bills. What made more sense was saying "Why not do whatever the heck I want for the next 12 months eh?" So I got married to the girl I love and we went on a few trips (of varied success), I took a train out to beautiful BC, crossed the Capilano Suspension Bridge (despite my massive fear of heights). Went to the top of the Seattle Space Needle, shopped for some new clothes & shoes, and tempted a Mexican resort known for exploding! Then December 2011 came. I was told I was doing quite well and that the new "plan" was to continue on the current chemotherapy treatments and reassess the situation in one year from that point. At that point you ask yourself "Ok, so now that I've taken a year off from "life" just doing whatever, what do I do now?" The answer for me might seem odd to some, but I just wanted to get back to the 9-5. I always enjoyed work anyways, and the bills still needed to be paid. In addition I felt like a return to a "normal" life (or something close to it) was the best way to be happy and maybe live as though I was going to for quite some time (beyond December 2011). Here it is April 2012 and I'm like the Energizer Bunny®!
The plan medically is the same as always "Keep going and see how things turn out" with a "fingers crossed" undertone. My next MRI is April 23rd, with results to come early May. As per always that means stress and anxiety for the wife and I until then, and though you might think one would get used to that sort of thing by now, somehow you never truly do.
On a life story note, Nicole & I have decided to get the heck out of our current apartment complex (c/w noisy neighbours, dimly lit halls, poor air circulation, and expensive laundry machines a ways down the hall) for a new complex featuring an elevator, fresh air circulation, brightly lit hallways, in-suite laundry, and best of all, the complex is inhabited over 65% by senior citizens... SO I'LL FIT RIGHT IN!!! I can meet with George from down the hall and swap stories about the pharmacy technicians, healthy eating tips, and "those damned kids these days". It should be fun!
Once we are moved in and have the internet all transferred over I'll try to post a quick update to say "we're in and still doing adequately well!" Till then, Cheers ALL!!!
--
Tom
Friday, February 17, 2012
Q&A #2
A short while back Nicole, my lovely wife, created a sort of FAQ for those of you who might have wanted to ask a question of me, but were too afraid to do so (or perhaps simply didn't feel comfortable doing so). This is / was quite understandable and the feedback we got from people was quite positive, so I thought I'd take it upon myself to create a second such document to answer some of the questions I still get asked since...
#1) Tom, I've noticed you have an amazing physical appearance and what can only be described as rugged good looks, is this the result of the brain tumour?
No, while I can see why you might think this, my handsome appearance is a result of the same DNA and genetic structure that likely was part of the reason for my developing GBM in the first place. Good question though!
#2) Tom, does your brain tumour give you any super powers?
Again, I'm afraid the answer is no, and again I can see why you'd be confused. I just wear the cape because it suits me.
#3) Hey Tom, I was wondering, if you had to choose between a delicious piece of pizza or having GBM, which would you choose?
This one is easy. I'd pick the pizza. The pizza is much less likely to kill me. I might get some heartburn, but they have pills to treat that which are much more effective than my chemotherapy is on my tumour.
#4) Oh, Tom! I didn't see you standing there. Hey, while you're here, would you mind telling me how you deal with the everyday stress of living with a terminal illness?
If I had to use one word it would be "hope". If I had to use three with a hyphen, they would be "Nicole O'Leary-Sontag". She helps get me through each and every day. This means she must bear the burden of more stress than any other human on Earth (in my humble opinion), but together we forge ahead in our journey.
#5) If you had to guess what the 5th question someone would ask you in a list such as this, what would it be?
Probably "If you had to guess what the 5th question someone would ask you in a list such as this, what would it be?"
#7) Is this question an inside joke that only Nicole will get?
Yes. Why? Everything Nicole references is in 7's. I have just inadvertently turned the inside joke into an outside joke by explaining why it should have been funny to her. Should an outside joke just be called a "joke"? Please answer in the form of a blog entry which you update infrequently and constantly feel guilty about not making more regular posts.
#8) Heads or tails?
You're not even holding a coin. Even if you were, how would I know what it had landed on? Could I trust you? How would we find a way to figure all of this out in a reasonable amount of time? Why were we flipping a coin in the first place? This is stupid.
#9) What are your plans for tomorrow?
This depends on when you read this. February 18th (which is tomorrow for me as I write this) I plan to scout out a new countertop dishwasher to replace the one that broke down on Nicole & I, while partying like it is 1999. We will also spontaneously dance... perhaps in a Sobey's. We probably need more milk.
CHEERS!!!
Post-Script: I am far to tired an uninterested in proof-reading the above. Please do so for me and post any errors in comment form. I will then go back and amend the document as necessary. It's called outsourcing, all of the cool bloggers are doing it.
#1) Tom, I've noticed you have an amazing physical appearance and what can only be described as rugged good looks, is this the result of the brain tumour?
No, while I can see why you might think this, my handsome appearance is a result of the same DNA and genetic structure that likely was part of the reason for my developing GBM in the first place. Good question though!
#2) Tom, does your brain tumour give you any super powers?
Again, I'm afraid the answer is no, and again I can see why you'd be confused. I just wear the cape because it suits me.
#3) Hey Tom, I was wondering, if you had to choose between a delicious piece of pizza or having GBM, which would you choose?
This one is easy. I'd pick the pizza. The pizza is much less likely to kill me. I might get some heartburn, but they have pills to treat that which are much more effective than my chemotherapy is on my tumour.
#4) Oh, Tom! I didn't see you standing there. Hey, while you're here, would you mind telling me how you deal with the everyday stress of living with a terminal illness?
If I had to use one word it would be "hope". If I had to use three with a hyphen, they would be "Nicole O'Leary-Sontag". She helps get me through each and every day. This means she must bear the burden of more stress than any other human on Earth (in my humble opinion), but together we forge ahead in our journey.
#5) If you had to guess what the 5th question someone would ask you in a list such as this, what would it be?
Probably "If you had to guess what the 5th question someone would ask you in a list such as this, what would it be?"
#6) So how are things going with you and your head lately?
Well, my head is doing quite well. My face is shedding like a Great Pyrenees in the spring. This is still due to the Acutane which may or may not be helping the chemotherapy in fighting off my tumour cells. Given the choice of a shedding face for the chance something might happen to extend my life, or a non-shedding face and a potentially shorter life... I go with my current flaky situation. As for my hair, it is regularly cut by the best hairdresser in the world (or at least Winnipeg). Her name is Monika and she is awesome. Thank you so much Monika for all of the many hair cuts over the past many years (and hopefully many years to come). But you were probably asking about the brain/tumour part eh? Well, I have not had a single headache for as long as I can remember. I have not experienced any nausea. The worst that has happened recently was a seizure earlier this week. After a rough couple of days finishing the chemo (with the after effects of the seizure tacked on) the earlier part of this week wasn't fun. But today I was feeling top notch as Nicole and I hit the town, and I ordered a pizza pop the size of a city bus. There will be a picture coming to a Facebook page near you. Maybe I'll even get it up on here somehow. Right now however, it is 1:23 in the morning and I must be up at 8:00 to take my morning pills.
#7) Is this question an inside joke that only Nicole will get?
Yes. Why? Everything Nicole references is in 7's. I have just inadvertently turned the inside joke into an outside joke by explaining why it should have been funny to her. Should an outside joke just be called a "joke"? Please answer in the form of a blog entry which you update infrequently and constantly feel guilty about not making more regular posts.
#8) Heads or tails?
You're not even holding a coin. Even if you were, how would I know what it had landed on? Could I trust you? How would we find a way to figure all of this out in a reasonable amount of time? Why were we flipping a coin in the first place? This is stupid.
#9) What are your plans for tomorrow?
This depends on when you read this. February 18th (which is tomorrow for me as I write this) I plan to scout out a new countertop dishwasher to replace the one that broke down on Nicole & I, while partying like it is 1999. We will also spontaneously dance... perhaps in a Sobey's. We probably need more milk.
CHEERS!!!
Post-Script: I am far to tired an uninterested in proof-reading the above. Please do so for me and post any errors in comment form. I will then go back and amend the document as necessary. It's called outsourcing, all of the cool bloggers are doing it.
Sunday, January 29, 2012
I have a new job! WOW!
Ok, I really shouldn't deserve much (if any) praise. I'm not working at either job full time, and neither are of the physical nature.
At my new job I kind of do a little bit of everything and must say I absolutely love it! The people I work with (and for) are all super friendly and have accommodated all of my "special needs". I have this amazing wife (who I might have mentioned before) named Nicole who is beyond words. She wakes up early each morning just to drive me in to work, dealing with the wonderful drivers we have on our Winnipeg roads. It is most amazing that we haven't been killed yet. I always thought my terminal brain cancer was my biggest threat, turns out it's either the lady turning the wrong way down a one way (onto Pioneer from Main street), or the soccer Mom who turned the yield from Donald onto McMillan at confusion corner into a TWO lane merge. Needless to say Nicole and I were both surprised to see a minivan suddenly appear beside us from nowhere. Alas, after dealing with this rush hour traffic to get me to the office, she then heads back home in the same anarchy that is the morning traffic rush to return home to work on her distance education courses (which she does via distance ed. so that she can be my very easy-on-the-eyes chauffeur). Amidst her studies she cleans the apartment and gets the supper meal ready. She then fights the afternoon rush to come to pick me up and get me back to the sanctity that is our two bedroom apartment.
Our lives are returning to what one might describe as "normal" if one were to ignore the 102 ways in which our lives are nowhere near normal. Since I don't say it enough in person, I will take this moment to say to you Nicole:
Nicole got me the GREATEST GIFTS EVER! Not just in terms of what they were, but also in terms of how she arranged them.
At my new job I kind of do a little bit of everything and must say I absolutely love it! The people I work with (and for) are all super friendly and have accommodated all of my "special needs". I have this amazing wife (who I might have mentioned before) named Nicole who is beyond words. She wakes up early each morning just to drive me in to work, dealing with the wonderful drivers we have on our Winnipeg roads. It is most amazing that we haven't been killed yet. I always thought my terminal brain cancer was my biggest threat, turns out it's either the lady turning the wrong way down a one way (onto Pioneer from Main street), or the soccer Mom who turned the yield from Donald onto McMillan at confusion corner into a TWO lane merge. Needless to say Nicole and I were both surprised to see a minivan suddenly appear beside us from nowhere. Alas, after dealing with this rush hour traffic to get me to the office, she then heads back home in the same anarchy that is the morning traffic rush to return home to work on her distance education courses (which she does via distance ed. so that she can be my very easy-on-the-eyes chauffeur). Amidst her studies she cleans the apartment and gets the supper meal ready. She then fights the afternoon rush to come to pick me up and get me back to the sanctity that is our two bedroom apartment.
Our lives are returning to what one might describe as "normal" if one were to ignore the 102 ways in which our lives are nowhere near normal. Since I don't say it enough in person, I will take this moment to say to you Nicole:
"You are simply amazing! I love you more than there are grains of sand on every beach (an inside joke referring to a creepy youtube video she made me watch). You have had to deal with the absolute worst that life could ever throw at anyone. I know when you started dating an old man like me you would have figured I'd develop health problems before you, however neither one of us ever saw any of this coming. I've lost some of my hair and the ability to hold a glass of water steadily in my left hand (sorry for burning the both of us with that freshly poured coffee the other day by the way), but I assure you I have not lost any of my love for you. I'd say you're my "other half" as you so often say to me, however I'd think allotting a mere 50% to you would be unfair. You are my other 99%. I'm the part those wall street protesters were/are so mad about. I am the 1%! Had we not met in that silly ol' Psych lab way back in the day, I'd probably be dead (A), but B) I'd have been robbed of the great times we've had together ever since we started going out on January 31st, 2008. A few more hours and we'll get to say we've been "going steady" (as the cool kids say) for four whole years! I know to most people this sounds like a small number, but I also know that for us small numbers are nothing to trivialize. Speaking of fours, we only have four months to go until we can say we've been married for a full year! None too shabby if you ask me. Since I'm starting to ramble I'll close off by saying you have no idea how grateful I am for everything you do for me and how happy you make me. I hope that my terrible jokes and questionable puns are enough to bring some joy to your life, because you deserve that... and so much more. I love you Nicole <3"Otherwise what can I say? Medically all is going well. I'm suffering from dry skin especially on my face these days, but again... considering what the list of side effects from my drugs could be, I'll take the flaky face with a painful smile (due to the cracked lips) and be pleased I am even alive to have dry skin to complain about. My next MRI is April 23rd (which I just found out by asking Nicole... as she knows everything at all times), so until then it's just blood work, pills, more pills, and more blood work. My last blood work was a lot of fun. Three holes in total with a lot of what I call "fishing" (where the needle is moved in/out/back/forth to try to find the blood flow... GOOD TIMES!!!). I've been working mostly at my new job these days (which I love!), however I do miss the MCP folk. I've tried to put in a few hours where I can. Thanks to my family for their birthday gifts/cards/wishes! OH!!! AND...
Nicole got me the GREATEST GIFTS EVER! Not just in terms of what they were, but also in terms of how she arranged them.
- She managed to get me an AWESOME Dr. Who shirt that I know Andrea would approve of. Très cool!
- She actually managed to simultaneously order me the TSN Jets channel AND get our overall bill reduced. Jets games AND save money? Heck ya!
- I got a promise of 3 Dr. Who episodes per night any time with the payment of kisses (before and after each episode). That is the equivalent of telling a Star Wars nerd that he can watch the whole trilogy back-to-back-to-back ANYTIME! HECK YA! For those of you who do not understand let me try another perspective. That would be like the average wife telling her husband he could watch a full afternoon of sports without protest.
- She will be my personal shopping assistant at Moores to pick me out "proper" clothes for my new "proper" job.
- She convinced me to get an iPhone. Yes I now have the new iPhone 4s. Yes, it is wicked cool! I have wanted it for quite some time now, however I considered it an unnecessary expense given that I already had a Blackberry, and couldn't justify spending anything on what was surely just a "waste of money". People have been overly generous with me in many respects over the past year, but having received financial support from family & friends gave me the mentality that I should live well within my means and not waste a cent. Nicole rightly pointed out that those same people who supported me likely did so wanting me to get the most enjoyment out of life that I could. She helped me see it would be surely stupid being frustrated with my Blackberry when I might well not even live to see the end of my 3-year phone contract. It was the "nudge" I needed and we got me all signed up. Thank you Nicole ;)
I should also throw out a couple more big "thank-you's". Firstly to Nicole's Dad Steve, who managed to score both Nicole and I tickets to the Feb 23rd Jets game versus the Lightening - THANKS!!! Secondly, to Doug & Kerri and who got Nicole and I tickets to Disney's Beauty And The Beast playing at the Centennial Concert Hall this coming weekend - THANKS!!! And of course thanks to Jen & Randy for their shwag :)
I had an awesome birthday / birthday-week! I'm writing this update from a place called Elkhorn Resort in Riding Mountain National Park, a scant 4 hour drive from home (if you count the pitstop for lunch and a Tim's). Nicole and I are out here until Tuesday to escape life and hopefully enjoy some snowshoeing, skating, and NOT WORKING or CLEANING AN APARTMENT. Sadly Nicole has had to bring her school work with her to finish up some assignments, which has allowed me time to write this lengthy blog while she slaves away on the couch behind me. It being midnight I think we should both call it a day and maybe enjoy ourselves tomorrow.
CHEERS EVERYBODY!!!
--
Tom
Tuesday, January 17, 2012
I was going to blog... for real!
Dear world of my blog readers (a very small percentage of the world),
I was going to "blog it up" good tonight, but alas I was sucked into a void called the "Internets", or more specifically the "Facebooks". This "Facebooks" I speak of is actually located in the very heart of the "Internets". As both are specifically designed to suck time out of your day, this means my time was sucked at an exponential rate. I blinked and an hour had passed (though apparently I had made upwards of 10 posts and sent a couple of messages). I do not regret it (as I must continue to my policy of "not regretting anything in my life... ever"). My life has gone great, and I cannot argue with where it has placed me now! I mean aside from the whole "terminal cancer" thing of course. So a long and detailed writing will have to wait for a day when I am not facing my self-imposed and rarely met deadline of 12:00 MIDNIGHT for a bed-time. Odds are I will not be able to brush my teeth, inject myself with Dalteparin Sodium, make up my pills for tomorrow, and get changed into my PJ's in less than three minutes. So Hope you all have a good night. I shall have to post the story of the fan on the roof & various other neighbourly noises (including "Screaming baby in 207" & "The best of East Indian Late Night from 203"). Tonight was good. It included dinner & a show with the O'Leary folks. Specifically the Rankin Family at the McPhillips Street Station Casino. Music was great, venue was questionable at best. Somehow though, if you are with the right people, where you are matters not. Well, it is now midnight and I've not done anything on my list. Mark January 17th as a fail in my bedtime challenge book.
NOTE TO SELF: Buy a blank notebook & label "Tom's Bedtime Challenge Book".
GOODNIGHT ALL!
--
Tom
PS: Cheers!
I was going to "blog it up" good tonight, but alas I was sucked into a void called the "Internets", or more specifically the "Facebooks". This "Facebooks" I speak of is actually located in the very heart of the "Internets". As both are specifically designed to suck time out of your day, this means my time was sucked at an exponential rate. I blinked and an hour had passed (though apparently I had made upwards of 10 posts and sent a couple of messages). I do not regret it (as I must continue to my policy of "not regretting anything in my life... ever"). My life has gone great, and I cannot argue with where it has placed me now! I mean aside from the whole "terminal cancer" thing of course. So a long and detailed writing will have to wait for a day when I am not facing my self-imposed and rarely met deadline of 12:00 MIDNIGHT for a bed-time. Odds are I will not be able to brush my teeth, inject myself with Dalteparin Sodium, make up my pills for tomorrow, and get changed into my PJ's in less than three minutes. So Hope you all have a good night. I shall have to post the story of the fan on the roof & various other neighbourly noises (including "Screaming baby in 207" & "The best of East Indian Late Night from 203"). Tonight was good. It included dinner & a show with the O'Leary folks. Specifically the Rankin Family at the McPhillips Street Station Casino. Music was great, venue was questionable at best. Somehow though, if you are with the right people, where you are matters not. Well, it is now midnight and I've not done anything on my list. Mark January 17th as a fail in my bedtime challenge book.
NOTE TO SELF: Buy a blank notebook & label "Tom's Bedtime Challenge Book".
GOODNIGHT ALL!
--
Tom
PS: Cheers!
Q&A
My lovely wife Nicole took the time to post a "Q&A" on Facebook to answer some questions we frequently get asked by people. I think the list is informative, and that there may be people who are curious about my condition but feel as though it would not be appropriate to ask such questions of me. Please note that I have no problems answering anyone's questions at any time. If anything I'm too bold and upfront about things and have found that I will say things in such a cold "detached" manner that I find I shock people in terms of my to the point honesty about my condition. Below is the document Nicole came up with...
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Since Tom's diagnosis, we've had a lot of people ask us a lot of questions about his condition. Not just how he is currently doing, but also about some of the specifics of his disease. I thought it might then be a good idea to create this document and share some common questions/answers in the hopes of helping people understand what is going on with Tom and how things are expected to progress. This is not meant to be a pessimistic document, just one with facts. So I will do my best to leave out my own emotional perspective. If anyone has any other questions as well, please feel free to post them on here, or send us a message. We'd be more than happy to answer any questions you have :)
1) If Tom had surgery last year, how does he still have a brain tumor?
Tom's tumor was approximately 5 x 5 x 6 cm when he was first brought to the hospital. After a 4+ hour surgery, the neurosurgeons were able to remove a large portion, however the were not able to remove the whole tumor. There is an issue sometimes differentiating between normal brain tissue and tumor tissue because they become intertwined. They would not have been able to remove more without doing more damage to his normal brain tissue, and so Tom was left with a piece of tumor about the size of a quarter.
2) If they could have removed the whole tumor, would Tom have been cured?
No. This type of brain tumor invades nearby tissue and extends its invisible tentacles into the tissue surrounding the tumor. Even if the visible tumor was entirely removed, it would have been impossible for them to remove all of the cancerous cells. We aren’t just talking about a few cells either; we’re talking about millions of undetectable cells.
3) If Tom’s tumor was so big, why did it take so long to bring him to the hospital?
Because of the location of Tom’s tumor (in the right frontal lobe) the tumor was able to grow quite a bit before it caused any noticeable side effects. If his tumor was located in a different area, he most likely would have had a rather obvious neurological impairment that would have been cause for concern.
4) If you had gone to the hospital sooner, would Tom’s prognosis have been better?
Unlikely. According to the doctors, with this type of cancer it does not matter how large the tumor is when it is diagnosed. Regardless of what size it is or when it is caught, it will still grow back. I say “unlikely” though, because it is technically possible Tom had a lower grade tumor that progressed into the grade IV GBM that he was diagnosed with. If that was the case, it would have theoretically been possible to slow down the progression of the lower grade tumor before it turned into a GBM thus giving Tom a better prognosis. However, the neurosurgeon was under the impression there was no way to know how long he’s had the tumor and the general view is that a lot of these tumors just “start off bad” as he put it. Furthermore, Tom only started to experience symptoms a few weeks before we brought him to the hospital, and those symptoms only seemed suspicious upon reflection. They were not severe enough to warrant a huge amount of concern until the end. Even his family doctor, and the doctor’s in emergency were unconvinced there was anything seriously wrong. At the hospital, they only did a CT to rule out meningitis – not because they suspected a brain tumor.
5) Tom’s last MRI’s showed his tumor is shrinking. I thought that wasn’t supposed to happen?
Tom’s MRI results are not entirely typical, and he is lucky in that regard. However, others have had their tumors shrink or stabilize before coming back with a vengeance. These results are good in the sense that we are being given more time with Tom, however inevitably his tumor will come back.
6) If his tumor is responding to chemotherapy, why would it grow back?
There are a number of reasons for this.
(a) Most patients must stop chemotherapy treatment after 2 years (if they are lucky enough to go 2 years with it still working). This is because prolonged use of this chemotherapy drug Temodal can cause severe side effects including the development of leukemia. Once the Temodal is stopped, the tumor will be given the opportunity to grow because it will not be under direct attack anymore.
(b) Not all of the cancerous cells that make up Tom’s tumor are created equal. Some appear to be susceptible to the chemo, however some cells will not be and some may even be very similar to stem cells, and therefore quite indestructible. Therefore not all the cells can be erradicated with the same treatment. The body also builds up a resistance to the chemotherapy drug and eventually it stops being as effective.
(c) Once all the chemo sensitive cells die off, there will only be chemo resistant cells left. This means that the cells that replicate will be purely resistant to chemo. This is why when the tumor recurs, it comes back usually much worse than it was originally.
6) But if Tom’s MRI’s show that the tumor is shrinking, he is now in remission right?
Unfortunately no. This type of tumor never really goes into remission. It is not curable. It can stabilize for a period of time (which is the purpose of treatment) however the chances of the tumor coming back are more than 99.9999%. This type of tumor can double in size every week, spread to other (and inoperable) areas of the brain and damage/replace healthy brain tissue as it goes.
7) If it comes back, can’t they just do another surgery?
Every time the neurosurgeons do surgery, there are huge risks involved. Not only would Tom be at risk for injury to the brain leading to severe deficits, but he would also be vulnerable to blood clots, infection, death and even personality changes. Furthermore, if the tumor comes back it could recur in a different area or evolve into multiple tumors that can not be safely removed through surgery.
8) What can be done if the chemotherapy stops working?
Unfortunately there are very few viable treatments for this type of cancer once the “standard treatment” fails. Usually they will try a couple of "salvage therapies" but these usually fail eventually as well. Once they run out of medication to stop the tumor growth, there is little they can do.
9) Why is this tumor so hard to treat?
The medical community has described this type of tumor as a “cancer nightmare”. This is because there are so many things that go wrong genetically, and there are too many pathways to try and correct. These tumors are incredibly aggressive and there is no “one size fits all” treatment for this type of tumor. It is also difficult to come up with a treatment that is capable of crossing the blood brain barrier and at least some of the cells are resistant to available treatments. Furthermore, while devastating, brain cancer is relatively rare and therefore it does not receive as much attention as other cancers.
10) Why is Tom not participating in Clinical trials?
That is a slightly complicated question, as there are a lot of reasons why we would or would not want to participate in a clinical trial.
(a) Clinical trials have a certain set of criteria that you need to meet in order to be eligible. When Tom was first diagnosed, we did not end up participating in one because the tumor tissue had to be sent to Europe for testing, and Tom would have had to delay chemo and radiation several weeks to wait for the results. This is not something they recommend, as without treatment this tumor grows incredibly fast. We therefore opted to start the standard treatment, which ended up being a good idea because they didn’t find what they were looking for with the testing. He was also not eligible for a different trial due to the blood clot in his lung.
(b) Clinical trials are tricky business and there are several phases to a clinical trial. It can be dangerous to participate in an early trial that is “experimenting” with the dosage or that has not been proven to be safe. It is also not always plausible to participate in a later phase as you might end up in a placebo group without any backup treatment.
(c) You need to be at a certain juncture when the clinical trial actually starts to participate. You can’t enter part way through; you have to “sign up” while they are recruiting. Tom would also not be eligible for a clinical trial now unless it is for patient’s who have had their tumors recur. This is because he has already had surgery + radiation + chemo and trials for newly diagnosed patients usually require that you not have previous treatment.
(c) We are limited by the number of trials Winnipeg is participating in.
11) If Winnipeg does not have enough trials, why not go to the states for a trial/treatment?
In order to participate in a clinical trial that is taking place at a different institute, we would need to completely transfer to that institute and become their patient. This would mean having to move to a different country and leaving behind our friends, family and therefore our support systems. We would also have to pay for all scans, tests, surgeries, treatments, prescriptions and appointments out of pocket on top of living expenses. As brain surgery in the states is over $100,000 and his medications alone amount to over $60,000 a year….when you add it up, it is simply not an option.
12) Tom can still beat this thing though right? Since he is young and doing so well?
I wish that the answer to this question was yes, and I still hold out hope that one day it might be. As it stands right now unfortunately, the chances of him making it to 5 years past his diagnosis are in the 1-3% range. Even if he was lucky enough to be one of these few “survivors”, the tumor will still come back. Some people have gone 6 years or 9 years with clear scans, and then all of a sudden it’s back and they’re gone. There is no cure for this type of cancer, and no treatment seems to even be getting close. The best hope is currently a vaccine that is specifically created for each patient based on their own DNA and the make up of their tumor….but even this amazing medical technology (which is still in trials) has only raised the average prognosis by 2 years. His age does give him a better shot at living longer than the doctor’s predict but this is an ongoing battle, and always will be. Even if we get to 5 years or 10 years, it isn’t over.
13) What is he doing in addition to the "standard treatment"?
Tom is taking Accutane, which is actually used to treat acne but has showed some benefit in fighting brain tumors. It is supposedly works by trying to convince cancer cells to be less cancerous (although I assume it's exact mechanism of action is a bit more complicated than that). However, almost all brain tumor patients under Tom's oncologist have been taken off this medication because patient trials showed it was less effective in real life than it was shown to be in the lab. Tom was given the option to drop it, but we decided he should still take it anyway. Largely because the medication does not pose any harm, and if there is even a slight chance it could provide him with some benefit, then it is worth the dry skin!
Tom is also taking Valproic Acid to control his seizures, which showed a modest benefit in the overall survival of GBM patient's in recent clinical trials.
He is also avoiding refined sugar, processed foods, artificial sweeteners and eating more natural and organic foods. He drinks green tea as often as possible (although he hates the stuff) because it was shown in some trials to sensitize brain tumour cells to Temodal. Also, because cholesterol is a huge player in the creation of cells, he consumes a specific amount of plant sterols per day to lower his blood cholesterol level.
PLUS he is staying (ridiculously) positive and we are trying to live as normal as possible, for as long as possible. A positive attitude will not change his genetic makeup, but it does make a difference
--------------------------------------------------------------------------------------------------------------
Thanks for writing this up my love! I shall try and post an update again soon. I have blood-work tomorrow, which is a standard appointment and all should go well. Cheers all!
--------------------------------------------------------------------------------------------------------------
Since Tom's diagnosis, we've had a lot of people ask us a lot of questions about his condition. Not just how he is currently doing, but also about some of the specifics of his disease. I thought it might then be a good idea to create this document and share some common questions/answers in the hopes of helping people understand what is going on with Tom and how things are expected to progress. This is not meant to be a pessimistic document, just one with facts. So I will do my best to leave out my own emotional perspective. If anyone has any other questions as well, please feel free to post them on here, or send us a message. We'd be more than happy to answer any questions you have :)
1) If Tom had surgery last year, how does he still have a brain tumor?
Tom's tumor was approximately 5 x 5 x 6 cm when he was first brought to the hospital. After a 4+ hour surgery, the neurosurgeons were able to remove a large portion, however the were not able to remove the whole tumor. There is an issue sometimes differentiating between normal brain tissue and tumor tissue because they become intertwined. They would not have been able to remove more without doing more damage to his normal brain tissue, and so Tom was left with a piece of tumor about the size of a quarter.
2) If they could have removed the whole tumor, would Tom have been cured?
No. This type of brain tumor invades nearby tissue and extends its invisible tentacles into the tissue surrounding the tumor. Even if the visible tumor was entirely removed, it would have been impossible for them to remove all of the cancerous cells. We aren’t just talking about a few cells either; we’re talking about millions of undetectable cells.
3) If Tom’s tumor was so big, why did it take so long to bring him to the hospital?
Because of the location of Tom’s tumor (in the right frontal lobe) the tumor was able to grow quite a bit before it caused any noticeable side effects. If his tumor was located in a different area, he most likely would have had a rather obvious neurological impairment that would have been cause for concern.
4) If you had gone to the hospital sooner, would Tom’s prognosis have been better?
Unlikely. According to the doctors, with this type of cancer it does not matter how large the tumor is when it is diagnosed. Regardless of what size it is or when it is caught, it will still grow back. I say “unlikely” though, because it is technically possible Tom had a lower grade tumor that progressed into the grade IV GBM that he was diagnosed with. If that was the case, it would have theoretically been possible to slow down the progression of the lower grade tumor before it turned into a GBM thus giving Tom a better prognosis. However, the neurosurgeon was under the impression there was no way to know how long he’s had the tumor and the general view is that a lot of these tumors just “start off bad” as he put it. Furthermore, Tom only started to experience symptoms a few weeks before we brought him to the hospital, and those symptoms only seemed suspicious upon reflection. They were not severe enough to warrant a huge amount of concern until the end. Even his family doctor, and the doctor’s in emergency were unconvinced there was anything seriously wrong. At the hospital, they only did a CT to rule out meningitis – not because they suspected a brain tumor.
5) Tom’s last MRI’s showed his tumor is shrinking. I thought that wasn’t supposed to happen?
Tom’s MRI results are not entirely typical, and he is lucky in that regard. However, others have had their tumors shrink or stabilize before coming back with a vengeance. These results are good in the sense that we are being given more time with Tom, however inevitably his tumor will come back.
6) If his tumor is responding to chemotherapy, why would it grow back?
There are a number of reasons for this.
(a) Most patients must stop chemotherapy treatment after 2 years (if they are lucky enough to go 2 years with it still working). This is because prolonged use of this chemotherapy drug Temodal can cause severe side effects including the development of leukemia. Once the Temodal is stopped, the tumor will be given the opportunity to grow because it will not be under direct attack anymore.
(b) Not all of the cancerous cells that make up Tom’s tumor are created equal. Some appear to be susceptible to the chemo, however some cells will not be and some may even be very similar to stem cells, and therefore quite indestructible. Therefore not all the cells can be erradicated with the same treatment. The body also builds up a resistance to the chemotherapy drug and eventually it stops being as effective.
(c) Once all the chemo sensitive cells die off, there will only be chemo resistant cells left. This means that the cells that replicate will be purely resistant to chemo. This is why when the tumor recurs, it comes back usually much worse than it was originally.
6) But if Tom’s MRI’s show that the tumor is shrinking, he is now in remission right?
Unfortunately no. This type of tumor never really goes into remission. It is not curable. It can stabilize for a period of time (which is the purpose of treatment) however the chances of the tumor coming back are more than 99.9999%. This type of tumor can double in size every week, spread to other (and inoperable) areas of the brain and damage/replace healthy brain tissue as it goes.
7) If it comes back, can’t they just do another surgery?
Every time the neurosurgeons do surgery, there are huge risks involved. Not only would Tom be at risk for injury to the brain leading to severe deficits, but he would also be vulnerable to blood clots, infection, death and even personality changes. Furthermore, if the tumor comes back it could recur in a different area or evolve into multiple tumors that can not be safely removed through surgery.
8) What can be done if the chemotherapy stops working?
Unfortunately there are very few viable treatments for this type of cancer once the “standard treatment” fails. Usually they will try a couple of "salvage therapies" but these usually fail eventually as well. Once they run out of medication to stop the tumor growth, there is little they can do.
9) Why is this tumor so hard to treat?
The medical community has described this type of tumor as a “cancer nightmare”. This is because there are so many things that go wrong genetically, and there are too many pathways to try and correct. These tumors are incredibly aggressive and there is no “one size fits all” treatment for this type of tumor. It is also difficult to come up with a treatment that is capable of crossing the blood brain barrier and at least some of the cells are resistant to available treatments. Furthermore, while devastating, brain cancer is relatively rare and therefore it does not receive as much attention as other cancers.
10) Why is Tom not participating in Clinical trials?
That is a slightly complicated question, as there are a lot of reasons why we would or would not want to participate in a clinical trial.
(a) Clinical trials have a certain set of criteria that you need to meet in order to be eligible. When Tom was first diagnosed, we did not end up participating in one because the tumor tissue had to be sent to Europe for testing, and Tom would have had to delay chemo and radiation several weeks to wait for the results. This is not something they recommend, as without treatment this tumor grows incredibly fast. We therefore opted to start the standard treatment, which ended up being a good idea because they didn’t find what they were looking for with the testing. He was also not eligible for a different trial due to the blood clot in his lung.
(b) Clinical trials are tricky business and there are several phases to a clinical trial. It can be dangerous to participate in an early trial that is “experimenting” with the dosage or that has not been proven to be safe. It is also not always plausible to participate in a later phase as you might end up in a placebo group without any backup treatment.
(c) You need to be at a certain juncture when the clinical trial actually starts to participate. You can’t enter part way through; you have to “sign up” while they are recruiting. Tom would also not be eligible for a clinical trial now unless it is for patient’s who have had their tumors recur. This is because he has already had surgery + radiation + chemo and trials for newly diagnosed patients usually require that you not have previous treatment.
(c) We are limited by the number of trials Winnipeg is participating in.
11) If Winnipeg does not have enough trials, why not go to the states for a trial/treatment?
In order to participate in a clinical trial that is taking place at a different institute, we would need to completely transfer to that institute and become their patient. This would mean having to move to a different country and leaving behind our friends, family and therefore our support systems. We would also have to pay for all scans, tests, surgeries, treatments, prescriptions and appointments out of pocket on top of living expenses. As brain surgery in the states is over $100,000 and his medications alone amount to over $60,000 a year….when you add it up, it is simply not an option.
12) Tom can still beat this thing though right? Since he is young and doing so well?
I wish that the answer to this question was yes, and I still hold out hope that one day it might be. As it stands right now unfortunately, the chances of him making it to 5 years past his diagnosis are in the 1-3% range. Even if he was lucky enough to be one of these few “survivors”, the tumor will still come back. Some people have gone 6 years or 9 years with clear scans, and then all of a sudden it’s back and they’re gone. There is no cure for this type of cancer, and no treatment seems to even be getting close. The best hope is currently a vaccine that is specifically created for each patient based on their own DNA and the make up of their tumor….but even this amazing medical technology (which is still in trials) has only raised the average prognosis by 2 years. His age does give him a better shot at living longer than the doctor’s predict but this is an ongoing battle, and always will be. Even if we get to 5 years or 10 years, it isn’t over.
13) What is he doing in addition to the "standard treatment"?
Tom is taking Accutane, which is actually used to treat acne but has showed some benefit in fighting brain tumors. It is supposedly works by trying to convince cancer cells to be less cancerous (although I assume it's exact mechanism of action is a bit more complicated than that). However, almost all brain tumor patients under Tom's oncologist have been taken off this medication because patient trials showed it was less effective in real life than it was shown to be in the lab. Tom was given the option to drop it, but we decided he should still take it anyway. Largely because the medication does not pose any harm, and if there is even a slight chance it could provide him with some benefit, then it is worth the dry skin!
Tom is also taking Valproic Acid to control his seizures, which showed a modest benefit in the overall survival of GBM patient's in recent clinical trials.
He is also avoiding refined sugar, processed foods, artificial sweeteners and eating more natural and organic foods. He drinks green tea as often as possible (although he hates the stuff) because it was shown in some trials to sensitize brain tumour cells to Temodal. Also, because cholesterol is a huge player in the creation of cells, he consumes a specific amount of plant sterols per day to lower his blood cholesterol level.
PLUS he is staying (ridiculously) positive and we are trying to live as normal as possible, for as long as possible. A positive attitude will not change his genetic makeup, but it does make a difference
--------------------------------------------------------------------------------------------------------------
Thanks for writing this up my love! I shall try and post an update again soon. I have blood-work tomorrow, which is a standard appointment and all should go well. Cheers all!
Friday, January 6, 2012
GOOD NEWS!
Good news everyone! The results of my MRI are good! So what do I mean by "good"? It means that my oncologist informed me that according to the people who read the MRI's things look "slightly better" than last time. He then added that he would say that things look "more than slightly better", meaning the tumour has noticeably shrunk according to the MRI scans. This has made Nicole and I very happy and we have been enjoying a very stress free day so far. As such I will not spend hours in front of my laptop writing up a giant blog update. Instead I say THANKS to everyone for all of their thoughts, love, prayers, and support as I continue my fight against those darned cancer cells in my brain. I'll have much to say later, but for now I think my oh so wonderful wife deserves my time (that, and I do rather enjoy spending time with her. I loves my wife!!!) Cheers!
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Tom
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Tom
Monday, January 2, 2012
A short post (for real)
I've decided that many short posts > infrequent long posts (not that I'm eliminating the possibility of a good ol' rant in the future), so...
Not much to update at this point. My next appointment with my oncologist is January 6th meaning I won't know how my last MRI (done on December 28th) went for another three days or so. I think it will go well as I went in head first (the right way) and it made all of the usual boops and beeps. There were a few hums in there for good measure as well. Tomorrow is my last day of Accutane in this cycle and I am much looking forward to that as my skin has felt very dried out as of late, especially my lips. To anyone who has seen me in person recently, NO I was not moulting. When on Accutane I merely have incredibly dry skin that seems to shed from my face like crazy. Luckily I don't keep it in a box like Goldmember as that would just be creepy. You might ask yourself why I would take a drug that causes me to suffer dry skin and lips even though it has not been proven to extend the life of Glioblastoma patients whatsoever outside of the lab, but I would say to you if there is even the slightest of slightest of chances that something will help me live even one day longer... I'll do it! I just like living that much I guess. Kind of helps when you have a super cute girl that agreed to spend the rest of her life with you.
Looking forward to Friday, I'm sure it will be a stressful and nerve-wracking time for both Nicole and I, but as I see it, if the results are good (which I'm putting my money on) we'll have at least a few days (or perhaps hours) to relax before they give us the date of my next MRI and we start the whole shebang all over again. Again I stress the difficulty of planning your future when you have a terminal illness that will statistically kill you in the next year. "Hey Tom, what are you doing next Friday?" can be answered by "Well, depending on the results I get this Friday, either watching some TV or trying to find an expensive treatment centre in the States or abroad that might offer me treatments that may offer me the hope that I might have a chance of living longer than three months!" It is hard not to be a Debbie Downer when you have a tumour in your brain, aside from the whole "I'm a dude and thus would not be named Debbie" thing.
Alas I'm staying positive and I thank all of you for your support. I'm not suggesting that anyone is waiting on pins and needles for my results on Friday, other than Nicole who will be in the room with me of course, so I'm not promising any instantaneous blog updates, but I'll try to put at least a paragraph or two up that night to give a very vague indication of how things went. Those of you who are on Facebook might get a faster update if my phone decides it would like to "work" (aka connect to the network, which it has not been doing much of lately).
As a final note: Thanks Nelson for setting up and hosting this year's ExciteBike Tourney! I had a great time and plan to hone my skills for next year's ASAP (I am not proud of my record this year, but as always am fully prepared to "blame the controller(s)").
CHEERS!
--
TOM
PS: Happy New Year's All Eh?
Not much to update at this point. My next appointment with my oncologist is January 6th meaning I won't know how my last MRI (done on December 28th) went for another three days or so. I think it will go well as I went in head first (the right way) and it made all of the usual boops and beeps. There were a few hums in there for good measure as well. Tomorrow is my last day of Accutane in this cycle and I am much looking forward to that as my skin has felt very dried out as of late, especially my lips. To anyone who has seen me in person recently, NO I was not moulting. When on Accutane I merely have incredibly dry skin that seems to shed from my face like crazy. Luckily I don't keep it in a box like Goldmember as that would just be creepy. You might ask yourself why I would take a drug that causes me to suffer dry skin and lips even though it has not been proven to extend the life of Glioblastoma patients whatsoever outside of the lab, but I would say to you if there is even the slightest of slightest of chances that something will help me live even one day longer... I'll do it! I just like living that much I guess. Kind of helps when you have a super cute girl that agreed to spend the rest of her life with you.
Looking forward to Friday, I'm sure it will be a stressful and nerve-wracking time for both Nicole and I, but as I see it, if the results are good (which I'm putting my money on) we'll have at least a few days (or perhaps hours) to relax before they give us the date of my next MRI and we start the whole shebang all over again. Again I stress the difficulty of planning your future when you have a terminal illness that will statistically kill you in the next year. "Hey Tom, what are you doing next Friday?" can be answered by "Well, depending on the results I get this Friday, either watching some TV or trying to find an expensive treatment centre in the States or abroad that might offer me treatments that may offer me the hope that I might have a chance of living longer than three months!" It is hard not to be a Debbie Downer when you have a tumour in your brain, aside from the whole "I'm a dude and thus would not be named Debbie" thing.
Alas I'm staying positive and I thank all of you for your support. I'm not suggesting that anyone is waiting on pins and needles for my results on Friday, other than Nicole who will be in the room with me of course, so I'm not promising any instantaneous blog updates, but I'll try to put at least a paragraph or two up that night to give a very vague indication of how things went. Those of you who are on Facebook might get a faster update if my phone decides it would like to "work" (aka connect to the network, which it has not been doing much of lately).
As a final note: Thanks Nelson for setting up and hosting this year's ExciteBike Tourney! I had a great time and plan to hone my skills for next year's ASAP (I am not proud of my record this year, but as always am fully prepared to "blame the controller(s)").
CHEERS!
--
TOM
PS: Happy New Year's All Eh?
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