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!
Tuesday, January 17, 2012
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!
--
Tom
--
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?
Friday, December 30, 2011
Title goes here
Good morning!
So, it is 7:07am and I am normally sleeping right now! Unfortunately (admittedly at the age of 27) I had a bad dream and found myself rather awake. I figured why not put my state of wakefulness to good use. Yes that means I just put the dishwasher on. I don't have a whole lot to write about, but that has never stopped me before, so here we go!
CONGRATULATIONS to Teri & Kevyn!!! You guys must be thrilled, as I know both Nicole and I are most certainly thrilled for you. We cannot wait to meet little Sawyer :)
Hope you all had a very merry Christmas. Ours was restful. Wait, did I say restful? Because I actually meant stressful. Nicole and I were both sick in the weeks prior to Christmas such that were not able to leave the apartment for much of anything apart for some desperate Christmas shopping (which I'm proud to say we were able to pull off). Some points:
A) Thank you to my family, who were far too generous with the gifts and provided us with an amazing meal!
B) Thank you to Nicole's family, who were far too generous with the gifts and provided us with an amazing meal!
C) Thank you to Doug & Kerri, who were far too generous with the gifts and provided us with an amazing meal!
Hey Gadient family! Yes I'm talking to you Shauna, Kevin, Emma, and Daniel! Why have we not seen you yet? The birthdays and Christmas has gone by and yet the gifts remain undelivered on our love seat!?! And the greetings and well wishes remain un-uttered from our mouths! This must be solved by a "get-together" perhaps in your local area (which you may take to mean "Steinbach" or "Your Living Room"). In the proceeding section "we" or "us" refers to the married couple of Tom Sontag and Nicole O'Leary-Sontag and "you" refers to the married couple of Shauna Gadient and Kevin Gadient.
Section 10.2 - The Outing
"We" would like to go out on a double date of sorts with "you" at your earliest convenience. Yes "we" know "you" have children and now a dog (as if you didn't have enough living beings to care for?) which makes it difficult to get out of the house, and that "we" are just the childless friends who do not know what it is like to try to raise two children under that age of six while importing dogs from abroad whose bread according to their wikipedia page are in the "Giant weight range" (see: http://en.wikipedia.org/wiki/Newfoundland_(dog))
Nonetheless it is perhaps good that "you" have friends like "us" who can push you to simply get out for a night without the kids/dog? A table at Peasant Cookery awaits the lot of us at your earliest convenience.
Section 10.3 - Regarding S&M Inc.
It must be stated that our contact with S&M Inc. (provider of laughter and all-around "good times") has been sadly lacking as of late, which I must admit the blame for which lands squarely on our roundish shoulders. We miss you guys and must meet up soon.
Doing away with needless section headings, the event of the year (or next year?) is coming up on January 1st! What event? If you don't know than you are probably not worthy of having me describe to you the joys that can come with an oversized soccer ball, 2-4 dirt bikes, and the best 64 bit graphics 1996 had to offer us. I can almost hear the extra revs as the z-trigger is pressed, feel the tension as the ballots are counted in a questionably undisclosed manner, and taste the cream puffs that have been on the table for the past 6 hours. Friendships are left at the door with the shoes. Pride is won like a cheap trophy bought at a Value Village. Yes, I am most certainly referring to the "7th Annual Excitebike 64 Soccer Tournament".
I should throw out a belated Congratulations to Randy & Jen as well on their recent engagement and upcoming wedding. Rumour has it I'm invited, so I'm pretty psyched.
So how about my brain? It is still around 3 lbs give or take, most of which is still made of of non-cancerous cells. I went for my latest MRI on the 28th. It made the usual beeps and hums and clicks. I don't speak the same language as the machine so I can't tell you how it went. Instead I have to wait until January 6th for my next visit to find out. Again there are a few scenarios that can play out:
#1) The tumour is bigger. This is bad. This means I statistically will only have a few months to live.
#2) The tumour is the same. This is good. It means Nicole and I can live on a knife's edge until the next MRI.
#3) The tumour is smaller. This is gooder. It means Nicole and I can relax (just a tiny bit) knowing that we likely have at least a few months until the thing grows back with a vengeance and kills me (statistically that is).
#4) The tumour is gone. The is the best. Though not possible (short of a miracle) this would mean I'd have my first clean MRI. Would this mean I'd be cured? No. It would mean I'd have millions of cancer cells in my brain, though not enough to show up on an MRI. It would mean that Nicole and I would be able to celebrate for at least a day before being crushed with the reminder that statistically I still would not live for very long.
And the word of the day is... HOPE! Hope is what we go on these days. Statistics matter not. If one in a million can beat this, than I just need to be that one (sorry other 999,999). The next week will be stressful beyond explanation for Nicole and I, up until the "moment of truth", which could result in tears of disappointment, or tears of joy. Either way I plan on crying like a girl. They might feel sorry for me and give me a cookie! Side note: NICOLE WAS AWESOME AND GOT ME A CHOCOLATE BAR FOR CHRISTMAS! But before you think she was trying to kill me... IT WAS MADE WITHOUT SUGAR! Best of all? IT TASTED LIKE IT WAS MADE WITH SUGAR!!! When people ask me if there is any reason to be happy these days I can just say "Well, the other day I had this delicious chocolate bar!"
I love my wife :)
Ok, so what else can I ramble on about. Randy has informed me that "Pinterest" is the newest latest craze, so for those of you who want to be more "with it" than I am you should check it out. I'll probably do so later today, so you have at least 6 hours to get a head start on me.
That be it for now. As per usual I will promise updates to this blog while in reality procrastinate doing so until forced by my own ever-building guilt to do so. It is now 8:07 am, meaning I've put a good hour into this and can return to bed in order to rest up for... whatever it is I'll end up doing today. CHEERS EVERYONE!!!
--
Tom
So, it is 7:07am and I am normally sleeping right now! Unfortunately (admittedly at the age of 27) I had a bad dream and found myself rather awake. I figured why not put my state of wakefulness to good use. Yes that means I just put the dishwasher on. I don't have a whole lot to write about, but that has never stopped me before, so here we go!
CONGRATULATIONS to Teri & Kevyn!!! You guys must be thrilled, as I know both Nicole and I are most certainly thrilled for you. We cannot wait to meet little Sawyer :)
Hope you all had a very merry Christmas. Ours was restful. Wait, did I say restful? Because I actually meant stressful. Nicole and I were both sick in the weeks prior to Christmas such that were not able to leave the apartment for much of anything apart for some desperate Christmas shopping (which I'm proud to say we were able to pull off). Some points:
A) Thank you to my family, who were far too generous with the gifts and provided us with an amazing meal!
B) Thank you to Nicole's family, who were far too generous with the gifts and provided us with an amazing meal!
C) Thank you to Doug & Kerri, who were far too generous with the gifts and provided us with an amazing meal!
Hey Gadient family! Yes I'm talking to you Shauna, Kevin, Emma, and Daniel! Why have we not seen you yet? The birthdays and Christmas has gone by and yet the gifts remain undelivered on our love seat!?! And the greetings and well wishes remain un-uttered from our mouths! This must be solved by a "get-together" perhaps in your local area (which you may take to mean "Steinbach" or "Your Living Room"). In the proceeding section "we" or "us" refers to the married couple of Tom Sontag and Nicole O'Leary-Sontag and "you" refers to the married couple of Shauna Gadient and Kevin Gadient.
Section 10.2 - The Outing
"We" would like to go out on a double date of sorts with "you" at your earliest convenience. Yes "we" know "you" have children and now a dog (as if you didn't have enough living beings to care for?) which makes it difficult to get out of the house, and that "we" are just the childless friends who do not know what it is like to try to raise two children under that age of six while importing dogs from abroad whose bread according to their wikipedia page are in the "Giant weight range" (see: http://en.wikipedia.org/wiki/Newfoundland_(dog))
Nonetheless it is perhaps good that "you" have friends like "us" who can push you to simply get out for a night without the kids/dog? A table at Peasant Cookery awaits the lot of us at your earliest convenience.
Section 10.3 - Regarding S&M Inc.
It must be stated that our contact with S&M Inc. (provider of laughter and all-around "good times") has been sadly lacking as of late, which I must admit the blame for which lands squarely on our roundish shoulders. We miss you guys and must meet up soon.
Doing away with needless section headings, the event of the year (or next year?) is coming up on January 1st! What event? If you don't know than you are probably not worthy of having me describe to you the joys that can come with an oversized soccer ball, 2-4 dirt bikes, and the best 64 bit graphics 1996 had to offer us. I can almost hear the extra revs as the z-trigger is pressed, feel the tension as the ballots are counted in a questionably undisclosed manner, and taste the cream puffs that have been on the table for the past 6 hours. Friendships are left at the door with the shoes. Pride is won like a cheap trophy bought at a Value Village. Yes, I am most certainly referring to the "7th Annual Excitebike 64 Soccer Tournament".
I should throw out a belated Congratulations to Randy & Jen as well on their recent engagement and upcoming wedding. Rumour has it I'm invited, so I'm pretty psyched.
So how about my brain? It is still around 3 lbs give or take, most of which is still made of of non-cancerous cells. I went for my latest MRI on the 28th. It made the usual beeps and hums and clicks. I don't speak the same language as the machine so I can't tell you how it went. Instead I have to wait until January 6th for my next visit to find out. Again there are a few scenarios that can play out:
#1) The tumour is bigger. This is bad. This means I statistically will only have a few months to live.
#2) The tumour is the same. This is good. It means Nicole and I can live on a knife's edge until the next MRI.
#3) The tumour is smaller. This is gooder. It means Nicole and I can relax (just a tiny bit) knowing that we likely have at least a few months until the thing grows back with a vengeance and kills me (statistically that is).
#4) The tumour is gone. The is the best. Though not possible (short of a miracle) this would mean I'd have my first clean MRI. Would this mean I'd be cured? No. It would mean I'd have millions of cancer cells in my brain, though not enough to show up on an MRI. It would mean that Nicole and I would be able to celebrate for at least a day before being crushed with the reminder that statistically I still would not live for very long.
And the word of the day is... HOPE! Hope is what we go on these days. Statistics matter not. If one in a million can beat this, than I just need to be that one (sorry other 999,999). The next week will be stressful beyond explanation for Nicole and I, up until the "moment of truth", which could result in tears of disappointment, or tears of joy. Either way I plan on crying like a girl. They might feel sorry for me and give me a cookie! Side note: NICOLE WAS AWESOME AND GOT ME A CHOCOLATE BAR FOR CHRISTMAS! But before you think she was trying to kill me... IT WAS MADE WITHOUT SUGAR! Best of all? IT TASTED LIKE IT WAS MADE WITH SUGAR!!! When people ask me if there is any reason to be happy these days I can just say "Well, the other day I had this delicious chocolate bar!"
I love my wife :)
Ok, so what else can I ramble on about. Randy has informed me that "Pinterest" is the newest latest craze, so for those of you who want to be more "with it" than I am you should check it out. I'll probably do so later today, so you have at least 6 hours to get a head start on me.
That be it for now. As per usual I will promise updates to this blog while in reality procrastinate doing so until forced by my own ever-building guilt to do so. It is now 8:07 am, meaning I've put a good hour into this and can return to bed in order to rest up for... whatever it is I'll end up doing today. CHEERS EVERYONE!!!
--
Tom
Sunday, December 18, 2011
Merry Christmas to ye all!
And to all a goodnight? I think that is how it goes. Anyways, it's ME! TOM! I haven't blogged in a while and figure now is as good a time as any to do so.
I am BORED! Just a little bit. A couple of weeks trapped in an apartment will do that to a guy. I'm feeling good now, though I have a wife who is most definitely NOT feeling good. We were good enough to take turns (I was sick week 1, her week 2), so I'm hoping week #3 finds us both healthy and well. Where did it all begin?
About two weeks ago Nicole and I decided to treat ourselves to a night out consisting of dinner and a movie. We didn't even get as far as the dinner. We went to Joey's on Kenaston and placed our orders. Before our food even arrived I had a sudden feeling come over me that I find hard to describe other than to say, in using my best 8 year old vocabulary, it was a "bad & yucky" feeling. I had just been to the washroom to blow my nose so I thought perhaps I was just feeling lightheaded. Just in case I warned Nicole "something bad" might be happening. I tried to answer her questions as to how I felt by stating I just felt a sort-of-nauseous feeling come over me and that I could not concentrate in terms of my mental or visual focus. I then felt my head and neck begin to twitch to the left. I figured I was having a seizure. This was a different experience for me, despite having had several seizures previously. Most of my seizures are what I believe are referred to as "Absence Seizures", and not the arms-flailing-wildly "Grand Mal" or "Tonic Clonic" seizures I certainly would have had come to mind when hearing the word "seizure" prior to experiencing any myself. This means I might "zone out" for a moment (maybe a few seconds) and be unresponsive, but otherwise return to "normal" a short while later. Only once did I seem to stay in a seizure-like state, which was when I was deemed to be "status epilepticus" and put into a medically induced coma back in July of this year. Regardless I have very little recollection of any of my past seizures other than the moments leading up to them. This was the first one I can say I was conscious during and can still remember the feelings of to this day. Nicole was (as usual) amazing, and managed to calm me down, as I was feeling quite panicked while having my seizure. She then managed to get me my Ativan (aka: Lorazepam, a drug used to help treat anxiety attacks, seizures, and kill off highly troubled though critically acclaimed pop singers who are about to launch sold-out shows in Europe). The stuff is magic and I can see why one would want to use/abuse it. In my case it helps to stop seizures from happening in a way that someone who has a degree in chemistry or biology might be able to explain.
Nicole informed the waitress that we had to leave and that we needed the yet-to-be delivered meals wrapped "to go". Despite not having any of our beverages we were charged for them, and an accidental press of the 15% tip button meant our server probably had the best tip-to-work ratio of the night, and ensured that at $50, our trip to Joey's was one of the most expensive and least enjoyable "take-out" experiences of recent times.
Nicole informs me I had two additional seizures. One in the car ride home from the restaurant and a second while back in the apartment. I'm sure this was a scary time for her, as I know it was for me, and I wasn't even fully conscious or aware of what was going on. Alas, we made it through that day/night without any of the severe postictal symptoms I've experienced before (such as believing I was in an alternate reality... aka: the "Going Crazy Phase").
Long story made shorter, after getting blood work done, I was cleared to begin Chemotherapy on Wednesday December 14th (which had been delayed from one week prior, December 7th, due to the cold/flu symptoms I was experiencing then). I have since been told I will be referred to a neurologist once an opening becomes available to assess why I still seem to be having seizures regularly (every two months or so on average) despite being on two different anti-seizure medications. I'll let you know how that goes, when it goes, though they warned me it can take a long time to get such an appointment made.
All seemed to be on track when on Monday Nicole started to feel ill. Her illness was less of a common flu/cold and more of a stomach virus or some such thing. I jokingly said I was married to Winnie the Pooh as her tummy was oh so very rumbly. We were hoping it would be a quick thing she would get over before I started Chemo, as when I'm on chemo my white blood cell counts are lowered and I am more susceptible to getting other infections. As it went, she remained (and remains) ill, but despite starting my Chemo this past Wednesday I have not developed any of her current symptoms. Today is Sunday and thus the last of my 5-day chemo stretch and I'm actually feeling about 95% healthy with just a bit of my cough & stuffy head/nose left over from the cold/flu I had before all of this craziness started. With any luck tomorrow will see both of us at 100%, but with Nicole feeling worse today than she did yesterday, that is not looking like the money-making bet.
We now face the wonderful prospect of having to finish our Christmas shopping in the five or so days before Christmas which should be just MAGICAL! Admittedly, I have more shopping to do than Nicole, though as she is my chauffeur she really can't escape the chaos of mall parking (sorry love).
So both of us are reaching stir-crazy levels, as TV can only provide so much relief. I've loaded and unloaded the dishwasher to the point where I need to pointlessly dirty dishes just to keep myself from absolute boredom. I face the unfortunate situation of needing to avoid getting whatever Nicole has, given my reduced immune system at the moment, and me getting whatever she has and knocking me out for the next week+ would BEYOND SUCK, so she's effectively in quarantine in the bedroom. This sounds unfortunate, though I would argue being in "rest-of-the-apartment" quarantine is not much better. I've gotten a lot of reading done, and now a lot of blogging done, but I find I'm surprisingly bored of not doing a whole lot. Maybe I'll run around in the parking lot screaming obscenities for a while. Crazy people always seem to look to have so much fun when they're doing it. That or maybe a nap... in which I dream about running around the parking lot screaming obscenities. The latter has the advantage of me not having to put my jacket or shoes on. Hope you all are in better health than my lovely wife and I and keep in mind that if any of you are finding the stress of the holidays "too much to handle", I would gladly trade places with you for even just 5 minutes of that feeling. Cheers!
--
Tom
PS: GO JETS GO! (I think as a Winnipeg resident I'm legally required to put that in)
I am BORED! Just a little bit. A couple of weeks trapped in an apartment will do that to a guy. I'm feeling good now, though I have a wife who is most definitely NOT feeling good. We were good enough to take turns (I was sick week 1, her week 2), so I'm hoping week #3 finds us both healthy and well. Where did it all begin?
About two weeks ago Nicole and I decided to treat ourselves to a night out consisting of dinner and a movie. We didn't even get as far as the dinner. We went to Joey's on Kenaston and placed our orders. Before our food even arrived I had a sudden feeling come over me that I find hard to describe other than to say, in using my best 8 year old vocabulary, it was a "bad & yucky" feeling. I had just been to the washroom to blow my nose so I thought perhaps I was just feeling lightheaded. Just in case I warned Nicole "something bad" might be happening. I tried to answer her questions as to how I felt by stating I just felt a sort-of-nauseous feeling come over me and that I could not concentrate in terms of my mental or visual focus. I then felt my head and neck begin to twitch to the left. I figured I was having a seizure. This was a different experience for me, despite having had several seizures previously. Most of my seizures are what I believe are referred to as "Absence Seizures", and not the arms-flailing-wildly "Grand Mal" or "Tonic Clonic" seizures I certainly would have had come to mind when hearing the word "seizure" prior to experiencing any myself. This means I might "zone out" for a moment (maybe a few seconds) and be unresponsive, but otherwise return to "normal" a short while later. Only once did I seem to stay in a seizure-like state, which was when I was deemed to be "status epilepticus" and put into a medically induced coma back in July of this year. Regardless I have very little recollection of any of my past seizures other than the moments leading up to them. This was the first one I can say I was conscious during and can still remember the feelings of to this day. Nicole was (as usual) amazing, and managed to calm me down, as I was feeling quite panicked while having my seizure. She then managed to get me my Ativan (aka: Lorazepam, a drug used to help treat anxiety attacks, seizures, and kill off highly troubled though critically acclaimed pop singers who are about to launch sold-out shows in Europe). The stuff is magic and I can see why one would want to use/abuse it. In my case it helps to stop seizures from happening in a way that someone who has a degree in chemistry or biology might be able to explain.
Nicole informed the waitress that we had to leave and that we needed the yet-to-be delivered meals wrapped "to go". Despite not having any of our beverages we were charged for them, and an accidental press of the 15% tip button meant our server probably had the best tip-to-work ratio of the night, and ensured that at $50, our trip to Joey's was one of the most expensive and least enjoyable "take-out" experiences of recent times.
Nicole informs me I had two additional seizures. One in the car ride home from the restaurant and a second while back in the apartment. I'm sure this was a scary time for her, as I know it was for me, and I wasn't even fully conscious or aware of what was going on. Alas, we made it through that day/night without any of the severe postictal symptoms I've experienced before (such as believing I was in an alternate reality... aka: the "Going Crazy Phase").
Long story made shorter, after getting blood work done, I was cleared to begin Chemotherapy on Wednesday December 14th (which had been delayed from one week prior, December 7th, due to the cold/flu symptoms I was experiencing then). I have since been told I will be referred to a neurologist once an opening becomes available to assess why I still seem to be having seizures regularly (every two months or so on average) despite being on two different anti-seizure medications. I'll let you know how that goes, when it goes, though they warned me it can take a long time to get such an appointment made.
All seemed to be on track when on Monday Nicole started to feel ill. Her illness was less of a common flu/cold and more of a stomach virus or some such thing. I jokingly said I was married to Winnie the Pooh as her tummy was oh so very rumbly. We were hoping it would be a quick thing she would get over before I started Chemo, as when I'm on chemo my white blood cell counts are lowered and I am more susceptible to getting other infections. As it went, she remained (and remains) ill, but despite starting my Chemo this past Wednesday I have not developed any of her current symptoms. Today is Sunday and thus the last of my 5-day chemo stretch and I'm actually feeling about 95% healthy with just a bit of my cough & stuffy head/nose left over from the cold/flu I had before all of this craziness started. With any luck tomorrow will see both of us at 100%, but with Nicole feeling worse today than she did yesterday, that is not looking like the money-making bet.
We now face the wonderful prospect of having to finish our Christmas shopping in the five or so days before Christmas which should be just MAGICAL! Admittedly, I have more shopping to do than Nicole, though as she is my chauffeur she really can't escape the chaos of mall parking (sorry love).
So both of us are reaching stir-crazy levels, as TV can only provide so much relief. I've loaded and unloaded the dishwasher to the point where I need to pointlessly dirty dishes just to keep myself from absolute boredom. I face the unfortunate situation of needing to avoid getting whatever Nicole has, given my reduced immune system at the moment, and me getting whatever she has and knocking me out for the next week+ would BEYOND SUCK, so she's effectively in quarantine in the bedroom. This sounds unfortunate, though I would argue being in "rest-of-the-apartment" quarantine is not much better. I've gotten a lot of reading done, and now a lot of blogging done, but I find I'm surprisingly bored of not doing a whole lot. Maybe I'll run around in the parking lot screaming obscenities for a while. Crazy people always seem to look to have so much fun when they're doing it. That or maybe a nap... in which I dream about running around the parking lot screaming obscenities. The latter has the advantage of me not having to put my jacket or shoes on. Hope you all are in better health than my lovely wife and I and keep in mind that if any of you are finding the stress of the holidays "too much to handle", I would gladly trade places with you for even just 5 minutes of that feeling. Cheers!
--
Tom
PS: GO JETS GO! (I think as a Winnipeg resident I'm legally required to put that in)
Wednesday, November 30, 2011
So I'm back in Canada eh?
Ok, I've obviously been home for a while (since November 21st to be exact), but have managed to procrastinate updating my blog until now. Part two of the Mexican Adventure story starts NOW!
The scary taxi ride to our second resort (the "Princess Grand Riviera Maya") surprisingly resulted in no fatalities of anyone of us in or outside of the taxi. The Princess seemed about 200 times better than the "Grand Sirenis Riviera Maya" we left far behind, though that might just have been due to the absolute horrors we experienced at that last resort. The gentleman at the desk was friendly enough and we got to our room. Was it perfect? No. Was it Mexican perfect? Yes. This means it was as good as anyone can reasonably expect from any room at any resort in Mexico as I have now learned. We had a balcony with a decent view. I think Nicole has posted pics on her Facebook page for those interested in what sayings tell me I can only do in 1,000 words (little do they know I would do it in no less than 1,500!) We asked about internet and were told there was a fee and it could only be accessed from the lobby either from their own lobby PCs or our own laptops wirelessly. The rates were varied but came in 30 minutes, 24 hours, or 7 days. There was virtually no difference between 30 minutes and 24 hours, but a large jump to 7 days. Given that we were only going to be at this resort for 5 1/2 days we opted to go with the 24 hours a couple of times during our stay to keep things affordable. Funny story! We were told by more than one hotel employee the internet could only be accessed from the lobby. I have this brilliant wife who says "Why don't we try it from the room anyways?" I go on a rant about how there is no way any Wi-Fi routers they have feet up in the lobby could possibly reach our room which was quite a distance (a good 10 minute walk) from the lobby. So what happens? It works! Not only that we loaded up their own hotel's website which advertises extra pay features including "Internet available in the rooms and some areas". Go figure. Nicole +20 points, desk clerk -10 points. This newfound ability to browse the web from our room turned out to be a curse dressed up as a blessing as Nicole decided to research our new resort and look up some reviews to see how good/bad the rest of our trip might be.
Turns out this Princess resort might be known to some of you. Remember that news story about a year back where some people (including some Canadians) died in an explosion at a resort in Mexico? How much do you want to bet it was the same one we were staying at now? If you bet against a "yes" you are a terrible gambler and a terribly unintelligent person I'm sorry to say (I mean why would I ask unless it was the exact same place?) Feel free to have a look at what the resort looks like after some gas escapes and then explodes:
http://www.thestar.com/news/world/article/894364--mexico-resort-partly-closed-after-blast
Remember my wife Nicole "the worrier" O'Leary Sontag? Remember how in the last blog I told you she was worried about every aspect of the trip and specifically how it might put my health in danger? For some reason this newfound "nugget" of information did little-to-nothing to relieve any of her stress. In fact, she became more worried and stressed (if you can believe that?!?) Yes, I'm using a ton of sarcasm here in case it isn't coming across in these rather bland black letters (that will become white once I publish this post). This only added to our dislike for WestJet Vacations, given that we asked the rep specifically about both resorts we were given as options to transfer to (and what some pros and cons might be of each). I get that they don't want to advertise the fact the place exploded almost one year prior, however an "oh by the way..." would have been nice.
Aside from that the trip was fairly enjoyable. The food was 50/50 good/bad. The buffet was the latter of the 50's, while the à la carte restaurants were fantastic. We got to choose six à la cartes, which given our 6 night stay meant one for every dinner. We chose Oriental, Sushi, Grill (think cows and chickens), Temppanyaki (think Ichiban), Mexican, and finally Swiss (Fondu). Oddly enough the Oriental was by far the best while the Mexican came in a bottom of the list last.
Going to an "all inclusive" Mexican resort was obviously a fantastic idea given that I cannot drink (due to pills that affect my liver), should not ingest too much sugar (given the anaerobic cell functioning going on in the cancer cells in my brain), and should avoid direct sunlight (due to one of the medications I am on, and possibly some other reasons I cannot recall). I enjoyed many free waters and wore special sunscreen so thick people should have been calling me "Casper". I literally could "lather up" in the morning, go swimming in the ocean, swim in the pool, shower off in the afternoon, and still have adequate sun protection for the rest of the day. The water would bead off of me. I was wondering if going into the ocean might cause the locals to think Moses was near by however the effects were not quite so dramatic. The purpose of the trip was merely to find some sort of "rest and relaxation" away from the cold, away from Winnipeg, away from the hospital visits, and away from the stress. Thankfully we visited no hospitals while in Me-hi-co, and it was relatively warm the whole time we were there, the stress never does seem to go away. I did manage to enjoy the last several days at the resort and I think there is a chance Nicole herself did enjoy brief moments of SRSL (slightly reduced stress levels), though you would have to ask her.
Nonetheless we are back in Winnipeg now and facing all of the wonderful stresses (stressors) we are used to, which ironically brings some sort of comfort in and of itself. Hope you all have a good day/week/month/year and such and update you when I have more to say. Oh, and... CHEERS!!!
--
Tom
PS: I'm not proofreading this one, so bonus points to all who can find and point out any spelling/grammatical errors.
The scary taxi ride to our second resort (the "Princess Grand Riviera Maya") surprisingly resulted in no fatalities of anyone of us in or outside of the taxi. The Princess seemed about 200 times better than the "Grand Sirenis Riviera Maya" we left far behind, though that might just have been due to the absolute horrors we experienced at that last resort. The gentleman at the desk was friendly enough and we got to our room. Was it perfect? No. Was it Mexican perfect? Yes. This means it was as good as anyone can reasonably expect from any room at any resort in Mexico as I have now learned. We had a balcony with a decent view. I think Nicole has posted pics on her Facebook page for those interested in what sayings tell me I can only do in 1,000 words (little do they know I would do it in no less than 1,500!) We asked about internet and were told there was a fee and it could only be accessed from the lobby either from their own lobby PCs or our own laptops wirelessly. The rates were varied but came in 30 minutes, 24 hours, or 7 days. There was virtually no difference between 30 minutes and 24 hours, but a large jump to 7 days. Given that we were only going to be at this resort for 5 1/2 days we opted to go with the 24 hours a couple of times during our stay to keep things affordable. Funny story! We were told by more than one hotel employee the internet could only be accessed from the lobby. I have this brilliant wife who says "Why don't we try it from the room anyways?" I go on a rant about how there is no way any Wi-Fi routers they have feet up in the lobby could possibly reach our room which was quite a distance (a good 10 minute walk) from the lobby. So what happens? It works! Not only that we loaded up their own hotel's website which advertises extra pay features including "Internet available in the rooms and some areas". Go figure. Nicole +20 points, desk clerk -10 points. This newfound ability to browse the web from our room turned out to be a curse dressed up as a blessing as Nicole decided to research our new resort and look up some reviews to see how good/bad the rest of our trip might be.
Turns out this Princess resort might be known to some of you. Remember that news story about a year back where some people (including some Canadians) died in an explosion at a resort in Mexico? How much do you want to bet it was the same one we were staying at now? If you bet against a "yes" you are a terrible gambler and a terribly unintelligent person I'm sorry to say (I mean why would I ask unless it was the exact same place?) Feel free to have a look at what the resort looks like after some gas escapes and then explodes:
http://www.thestar.com/news/world/article/894364--mexico-resort-partly-closed-after-blast
Remember my wife Nicole "the worrier" O'Leary Sontag? Remember how in the last blog I told you she was worried about every aspect of the trip and specifically how it might put my health in danger? For some reason this newfound "nugget" of information did little-to-nothing to relieve any of her stress. In fact, she became more worried and stressed (if you can believe that?!?) Yes, I'm using a ton of sarcasm here in case it isn't coming across in these rather bland black letters (that will become white once I publish this post). This only added to our dislike for WestJet Vacations, given that we asked the rep specifically about both resorts we were given as options to transfer to (and what some pros and cons might be of each). I get that they don't want to advertise the fact the place exploded almost one year prior, however an "oh by the way..." would have been nice.
Aside from that the trip was fairly enjoyable. The food was 50/50 good/bad. The buffet was the latter of the 50's, while the à la carte restaurants were fantastic. We got to choose six à la cartes, which given our 6 night stay meant one for every dinner. We chose Oriental, Sushi, Grill (think cows and chickens), Temppanyaki (think Ichiban), Mexican, and finally Swiss (Fondu). Oddly enough the Oriental was by far the best while the Mexican came in a bottom of the list last.
Going to an "all inclusive" Mexican resort was obviously a fantastic idea given that I cannot drink (due to pills that affect my liver), should not ingest too much sugar (given the anaerobic cell functioning going on in the cancer cells in my brain), and should avoid direct sunlight (due to one of the medications I am on, and possibly some other reasons I cannot recall). I enjoyed many free waters and wore special sunscreen so thick people should have been calling me "Casper". I literally could "lather up" in the morning, go swimming in the ocean, swim in the pool, shower off in the afternoon, and still have adequate sun protection for the rest of the day. The water would bead off of me. I was wondering if going into the ocean might cause the locals to think Moses was near by however the effects were not quite so dramatic. The purpose of the trip was merely to find some sort of "rest and relaxation" away from the cold, away from Winnipeg, away from the hospital visits, and away from the stress. Thankfully we visited no hospitals while in Me-hi-co, and it was relatively warm the whole time we were there, the stress never does seem to go away. I did manage to enjoy the last several days at the resort and I think there is a chance Nicole herself did enjoy brief moments of SRSL (slightly reduced stress levels), though you would have to ask her.
Nonetheless we are back in Winnipeg now and facing all of the wonderful stresses (stressors) we are used to, which ironically brings some sort of comfort in and of itself. Hope you all have a good day/week/month/year and such and update you when I have more to say. Oh, and... CHEERS!!!
--
Tom
PS: I'm not proofreading this one, so bonus points to all who can find and point out any spelling/grammatical errors.
Saturday, November 19, 2011
Greetings from ME-HE-CO!
Hola Blog Readers,
The rumours [I started] about my going to Mexico have turned
out to be true. I am in fact in Mexico (or Me-he-co as I like to call it). It
all came about when Nicole found a last minute deal to stay at an all-inclusive
resort through WestJet Vacations on RedTag. We agreed that a trip was exactly
what we needed as life was getting stressful at home and with the winter
quickly coming and Christmas shopping around the bend, this might be our last
good chance to get away and enjoy ourselves before the end of the year. As luck
would have it the weeklong trip did not conflict with any of my usual hospital
visits or checkups. The only problem was that we only had a couple of days to
decide whether to book it or not. Of course there were (as there always are)
many reasons against going. I’m sure you’ve read the list I’ve put on this blog
prior about having to possibly be subjected to x-rays at the airport,
additional radiation from being on a plane, changes in pressure from the plane
causing swelling inside my head, increase risk of blood clots, odd waking &
sleeping schedules increasing the likelihood of a seizure, having to be away
from my medical team, being in a country of questionable food quality and standards,
an unknown medical system, and so on, and so on. All of these were hurdles for
us to overcome in order to enjoy a “relaxing week away”. Oh, and stress for me
is not good [insert overly long description of oxygen saturation levels and
anaerobic cell functioning].
I managed to convince Nicole “the worrier” O’Leary-Sontag
that it was worth all of the “what-if’s” to go on this trip. We ended up at a
resort that was listed as a 5-Star, but in actuality was what a 5-Star would be
if one of the stars murdered a couple of the other stars and then committed
suicide. In other words the resort was badly misrepresented in all of the
online descriptions and photos. To start
with, the entire resort seemed to be flat and slick stone walkways. Great idea
right? Classy look yes… safe when wet? No. It happened to be raining when we
first arrived and saw many people & children falling all over the place. I
grant you on TV this would have been funny to watch (provided no serious
injuries ensued), however one serious blow to my head could in fact kill me. Secondly,
the room smelled mustier than an old lady’s basement in which she kept bags of
old wet laundry and cats (whether the cats are in bags or just loose in the
basement is up to your imagination). Now it turns out ol’ Tom here has
allergies to mould, dust, penicillin, trees, and some other things. Mould and
dust would be the two that stick out in a room that was humid beyond belief and
very unclean (the hairdryer looked like it had about 3 months worth of “scudge”
built up on, in, and around it). We were unimpressed. We returned to the front
desk where they were shocked that the room would have been like that and said
they unfortunately had no other rooms with king beds available. With some
protest they were able to “find” another room for us to check out. Surprise
surprise, the second room was also incredibly musty and had the usual joys
(hairs in the bathtub, questionable stains on the bedding, etc.) and so it was
back to the lobby for us. Keep in mind this was all after having had to wake up
at 4:00 am to make it to the airport back in Winnipeg. Oh, and did I not
mention that part???
So, Nicole’s sister (and my now “sister-in-law” Jen) was
nice enough to drive us to the airport at 4:00am in order to get us to our
early flight on time. We cleared security in no time and figured we’d find a
comfy spot to relax. Over the course of our waiting we heard 15 calls (ok,
maybe 8, but exaggerating is way more fun) for the flight to Calgary, 22 (6)
for the flight to Montreal and 0 (zero) for the flight to Cancun. Nicole at one
point said, “Hey, we should go to the gate area to see what’s going on”. Upon
arriving at the gate we saw 0 (zero) passengers waiting and 1 (one) angry
panicked WestJet employee saying “Are you heading to Cancun? You’d better get
on that plane in a hurry, they’re unloading your bags and are about to take
off!!!” So far all is calm and relaxed right? As I see it, at least we didn’t
have to wait in any lines. Upon getting on the plane (and getting that
wonderful “Oh, you’re the idiots that made us wait here” look from our fellow passengers)
we asked a flight attendant about the status of our luggage. He assured us that
the employee at the other end of the terminal was just a bit over exaggerating
and that they wouldn’t have even begun to unload our luggage for at least
another 10-15 minutes. So far so good!!!
Now is when we get to Mexico and try to navigate the airport
with some moderate success. Again the stress levels are high as we manage to
find our tour operator who will take us to our resort (the crappy one I was
describing before I interrupted myself). Unfortunately we had to wait, as two
of the passengers scheduled to be on our shuttle could not be located
(thankfully they were not us). This meant standing in the hot humid air outside
of the airport watching for hours as busloads of other people got on their way.
Funny story side note time.
FUNNY SIDE NOTE: I took this neuro-psych test a few weeks
back that was designed to test my cognitive abilities and certain motor
functions, etc. just to see what brain functioning I have that might have been
affected by my tumour or the surgery to remove some of it late last year. I
received a phone call from the resident medical student running my test telling
me that I was best to come in for my follow up very shortly as the doctor was
going to be going on a vacation for a couple of weeks to “some place warm” and
thus I would have to wait a while to get my results if I did not make it in the
day or two following his phone call. Where did she go? Turned out she was
standing in the same area waiting for a shuttle bus just outside the Mexican
(Cancun) airport with her (I assume) husband. [Insert “It’s a small world after
all” being sung by little children]. </FUNNY SIDE NOTE> //HTML JOKE (I’m
a nerd)
After two hours in the hot sun at the airport we finally got
our shuttle, which took us on the long ride to the resort. If I recall
correctly we arrived in Mexico just before noon, and didn’t leave the airport
until 2:00 in the afternoon or so. At this point Nicole was running solely on
two bags of Bits ‘N Bites, while I had the same plus some Pop Chips in my
system to sustain me. Now I can return to the story…
So given it is now past 3 in the afternoon and Nicole and I
are both starving and tired (both understatements) and still have yet to be
assigned a decent room, we are not happy. Back at the front desk the gentleman
(code word for “asshole”, but I’m trying to keep this a clean blog) suggested
we settle for a room with two double beds as surely a third room would meet our
expectations. After much discussion it turned out he did have other king beds
available on the main floor of some buildings “if that was okay by us”. We said
we didn’t care what floor the room was on as long as it had the king bed we
asked (and paid) for plus was clean and I could breathe in it. Off to room
number three we went, by now knowing the shuttle cart route by heart (yet not
having seen any pools, the beach, or any food… our suitcases remaining very
unpacked). Want to guess the condition
of room number four? It was perhaps worst of all.
We finally went back to the front lobby and asked to speak
to the WestJet representative we were told would be at the hotel. Of course
there was no WestJet employee but rather a “Best Day Travel” representative who
WestJet contracted with to look after things in their absence. The gentleman
from Best Day was nice enough, but basically had no authority to do anything
for us. He could only put us on the phone with the actual WestJet rep. The
WestJet rep was only willing to do what the hotel would offer us, which was to
continuously show us room after room until we found one that we “liked”. I
found this insulting, as we weren’t being picky because we didn’t like the
colour of the drapes or some such thing. We just wanted what we paid for in a
room that didn’t cause undue risk to my fragile state of health. Again after
much heated debate we agreed to look at “one last room” which we were assured
would be clean and not musty. It was musty and was not clean in the sense of
the word that would be defined as “not dirty at all”, but it was the best of
all five we had seen and so settled for it as we had to eat and change our
clothes at the very least. The representative informed us she would be at the
hotel at 10am the next morning and would “try to get something worked out” but
that switching resorts was very tricky and not something that could be done
quickly. Also they were unwilling or unable to extend our stay by a day as we
argued our entire first day had been wasted as we were in no way able to enjoy
any part of it while being shuttled between various rooms and the lobby with no
satisfying result in the end. We ordered some room service food, which turned
out to be the farthest thing from edible in the room (next to the must cushions
and sheets of course). After unpacking only the clothes we needed to wear the
next day (as there was no way we were going to stay at the resort one
additional day) we managed to take a brief walk at night in the dark. Oh, and did I mention the smell? The very un-"Grand" Grand Sirenis hotel and resort had a very unique smell of what I would describe as "raw sewage"wafting about the hotel grounds. So even though it was hard to see in the dark at least one of our senses got to enjoy some stimulation. GREAT START
TO THE FUN & THE SUN!
Sparing you all of the dragged out details we managed to get
the WestJet rep to set us up at a different resort for the remainder of our
stay in Mexico. The highlights of the process were that she (WestJet) was going
to charge us a transfer fee and would not be able to transport us to the second
resort (meaning we would have to arrange for and pay for a taxi ourselves). She
also could only offer us two options based upon brief descriptions which she
would then send to head office to be reviewed and sent back to her with details
about additional costs, etc. She could not show us any pictures or information
about the other resorts and we only had her word and descriptions to go by. We
asked her if she or the hotel could provide us with at least 30 minutes
complimentary Internet to research these resorts, which we were told they could
(would) not. Nicole and I paid for half an hour of Internet time and used the
world’s slowest PC’s to see what the resorts our rep had suggested looked like.
Neither was fantastic, but we picked the best out of the two and researched an
additional one ourselves. We went back to the rep who told us she could get us
in to our pick of the two for less that $200 and that she would waive the
transfer fee. Asking about the third resort we found she contacted head office
again and was told the additional fee would be $1000. We went with the <$200
resort hoping this 5-Star would provide us with some rest and relaxation in
what would now become a 5 ½ day Mexican vacation. But we weren’t out of the
Grand Sirenes just yet. Upon checking out just after noon, the same “gentleman”
as before told us we could not leave until we paid our phone bill for the room.
We informed him we had only made two calls and that both were to WestJet
Vacations using their 1-800 number to sort out the whole mess with their
falsely advertised hotel. He told us this did not matter and that unless we
paid the 100 pesos, we were not allowed to leave (as in they would not release
our luggage which they were holding at the front). It turned out that this
worked out to $8.67 CDN. We asked to speak to the manager. Of course he was the
“assistant manager”. We asked to see his manager, however his manager was in a
meeting and would not be available for a while. His main argument was that the
phone charge had “nothing to do with the hotel” and was directly charged by the
phone company, thus there was “nothing [he] could do”. I’ve been to business
school and I think waiving an $8 charge is something any business can and
should do if it means really upsetting an already irate customer, but I guess
at that point it was evident we would never return to the hotel anyways, and so
why not push our buttons just a little bit more.
$8.67 later we were in the back seat of a cab with only one
working seatbelt and our luggage in the back. The story goes on from here, but
I’m currently on the balcony of our hotel and the rain has just stopped. Rest
assured that both Nicole and I are both safe and sound and have eaten several
meals (of varying quality) since we’ve gotten to the “Princess Riviera Maya”.
The fun stories do continue though, so stay tuned!!! And lastly, before I go, I
offer you some Mexican CHEERS! J
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