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:

"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.

1. She managed to get me an AWESOME Dr. Who shirt that I know Andrea would approve of. Très cool!
2. She actually managed to simultaneously order me the TSN Jets channel AND get our overall bill reduced. Jets games AND save money? Heck ya!
3. 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.
4. She will be my personal shopping assistant at Moores to pick me out "proper" clothes for my new "proper" job.
5. 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

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!

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

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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!

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!
--
Tom

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?