*phone rings*
"Hello?"
"Hello! Mr. Cahoon! It's Dr. blahblah!"
"Dr. blahblah! how are you?"
"I'm great!, especially since I saw your PET scan results!!!!!"
*insert long silence*
"pardon me?"
"Everything looks so good, you must be thrilled"
"I uh a-a-a-am now!!!!!"
*insert another long silence*
"You didn't know did you?"
"Nope"
"Well then, Mr. Cahoon, congratulations on being cancer free"...
So, that was probably the Shortest, and best conversation I've ever had, again.
For those of you who know, or ever knew me; You know words were my strength, my sword....This ordeal took the words right from my mouth. Left me unsure......unable.....And now for the first time in over two years, i feel like i have something to say again :)
Now...Once this adrenaline high wears off, I will write a little more.
Thursday, 28 June 2012
Friday, 23 March 2012
What a crazy ride this has been...
It absolutely blows my mind, that this chapter of my life is now behind me.
I have officially completed 6 weeks of radiation therapy.
Now we wait until May, when I will travel back to Vancouver again for some more Imaging and various tests, and then in June we get the answer to the ultimate question; "Did we beat it?"
This last week was definitely the hardest of them all. The radiation finally started to really take it's physical toll on my body which means a lot more pain, a lot less eating, and a lot more drugs.
Mornings have been the worst. I wake up, and my throat and mouth are so dry they tear each other apart, and I get to spend the first 10 minutes of every morning swollen, in pain, coughing up blood.
Then the drugs start to kick in, and things start to pick up a little. treatments have been making me very nauseous, and yesterday was the first time i finally got the relief of ACTUALLY puking. I know that shouldn't be a relief, but when you've spent a part of nearly every day, for six weeks, in the fetal position and nauseous, puking is definitely a relief. Even if it DOES feel like acid coming up.
My face, neck, chest, and scars look ridiculous right now. Some of it worse than other parts, but for the most part i'm turning purple/black. It FEELS like a really, really, bad sun burn or infection. I'm coughing up parts of my mouth and throat at least 30 times an hr, which eventually leads to more bloody hacking. Keeping down solid food of any sort is VERY hard now, and even Ensure is starting to get hard to take down, because it is so thick, it increases the amount of hacking up I'm doing.
I just realized how much that all sounds like complaining or whining. I hope I don't come across that way, as I try to remind myself daily that it could always be much, MUCH worse. I know that somewhere out there right now, someone is fighting twice as hard for their life as I am mine. I don't mean to in any way downplay my own plight, but I also don't want to label myself a victim.
So. The waiting game begins. A couple weeks of healing, and we will be getting closer and closer to test results. It feels like its going to be a hundred years of waiting, but I thought the same thing 6 weeks ago about getting through treatment, and here I am today.
I will keep this page updated from time to time as updates become available, and more will come in the next few months in terms of how I'd like to use this site as a "go-to" guide for people in similar situations. and once I know what day my test results will be in, I will let you all know.
Thank you again to all who are keeping up to date, and to all who have written, called, and even traveled fair distances just to see me through this. Your interest, compassion, and love has helped me through this fight more than words can express.
Talk soon.
Marcus
I have officially completed 6 weeks of radiation therapy.
Now we wait until May, when I will travel back to Vancouver again for some more Imaging and various tests, and then in June we get the answer to the ultimate question; "Did we beat it?"
This last week was definitely the hardest of them all. The radiation finally started to really take it's physical toll on my body which means a lot more pain, a lot less eating, and a lot more drugs.
Mornings have been the worst. I wake up, and my throat and mouth are so dry they tear each other apart, and I get to spend the first 10 minutes of every morning swollen, in pain, coughing up blood.
Then the drugs start to kick in, and things start to pick up a little. treatments have been making me very nauseous, and yesterday was the first time i finally got the relief of ACTUALLY puking. I know that shouldn't be a relief, but when you've spent a part of nearly every day, for six weeks, in the fetal position and nauseous, puking is definitely a relief. Even if it DOES feel like acid coming up.
My face, neck, chest, and scars look ridiculous right now. Some of it worse than other parts, but for the most part i'm turning purple/black. It FEELS like a really, really, bad sun burn or infection. I'm coughing up parts of my mouth and throat at least 30 times an hr, which eventually leads to more bloody hacking. Keeping down solid food of any sort is VERY hard now, and even Ensure is starting to get hard to take down, because it is so thick, it increases the amount of hacking up I'm doing.
I just realized how much that all sounds like complaining or whining. I hope I don't come across that way, as I try to remind myself daily that it could always be much, MUCH worse. I know that somewhere out there right now, someone is fighting twice as hard for their life as I am mine. I don't mean to in any way downplay my own plight, but I also don't want to label myself a victim.
So. The waiting game begins. A couple weeks of healing, and we will be getting closer and closer to test results. It feels like its going to be a hundred years of waiting, but I thought the same thing 6 weeks ago about getting through treatment, and here I am today.
I will keep this page updated from time to time as updates become available, and more will come in the next few months in terms of how I'd like to use this site as a "go-to" guide for people in similar situations. and once I know what day my test results will be in, I will let you all know.
Thank you again to all who are keeping up to date, and to all who have written, called, and even traveled fair distances just to see me through this. Your interest, compassion, and love has helped me through this fight more than words can express.
Talk soon.
Marcus
Monday, 12 March 2012
AAaaaand I'm back...
So, It has definitely been a while.
To all of you, thank you for your patience... There has been so much going on, and the treatments are definitely starting to take their negative toll on my body, which is leaving me with less and less energy, and less and less desire to do anything other than lay around and hurt.
Tomorrow will leave me with only 12 more doses of radiation to do. I can't believe how fast these first 3 weeks have gone.
When I first walked into this, wide eyed like a deer in headlights, unsure, and terrified, I expected that the next 6 weeks were going to be the longest in my life.
I am happy to say that the journey thus far has not been as horrible as I expected.
The pain is ... well, it hurts. I think it would be a little more tolerable if it were one kind of pain, but there are so many different things that hurt. They've got me on astronomical amounts of pain medication, which in the beginning were low doses that only kind of helped. Now, with the amounts I'm on, I am finally starting to get some REAL pain relief. I am definitely a little doped-up 24/7 , but I guess that's the way it has to be for now.
I'm a little worried that as the radiation does it's damage over the next two weeks, the pain is going to get worse. But I just keep telling myself "Two weeks left, Two weeks left." I've come this far, I can push on through.
I'm sorry this isn't the most informative of posts, but the meds are kickin in, and its getting really hard to think.
But i wanted to make sure i got SOMETHING up, so you didn't think I'd forgotten about my readers. I PROMISE there will be more to come SOON.
Take care,
Marcus.
To all of you, thank you for your patience... There has been so much going on, and the treatments are definitely starting to take their negative toll on my body, which is leaving me with less and less energy, and less and less desire to do anything other than lay around and hurt.
Tomorrow will leave me with only 12 more doses of radiation to do. I can't believe how fast these first 3 weeks have gone.
When I first walked into this, wide eyed like a deer in headlights, unsure, and terrified, I expected that the next 6 weeks were going to be the longest in my life.
I am happy to say that the journey thus far has not been as horrible as I expected.
The pain is ... well, it hurts. I think it would be a little more tolerable if it were one kind of pain, but there are so many different things that hurt. They've got me on astronomical amounts of pain medication, which in the beginning were low doses that only kind of helped. Now, with the amounts I'm on, I am finally starting to get some REAL pain relief. I am definitely a little doped-up 24/7 , but I guess that's the way it has to be for now.
I'm a little worried that as the radiation does it's damage over the next two weeks, the pain is going to get worse. But I just keep telling myself "Two weeks left, Two weeks left." I've come this far, I can push on through.
I'm sorry this isn't the most informative of posts, but the meds are kickin in, and its getting really hard to think.
But i wanted to make sure i got SOMETHING up, so you didn't think I'd forgotten about my readers. I PROMISE there will be more to come SOON.
Take care,
Marcus.
Tuesday, 21 February 2012
A few days of catching up...
Well, I will start off by apologizing for the most recent delay in my posts.
I fully expected to be able to keep up with this on a day by day basis. However, it has become apparent that this is not the case. I figured I'd at least be able to sit down at some point each night before bed and get something on here, but by the time my days catch up with me, it's late at night and I am DONE.
I will do my best to stay on top of it as often as possible.
So, where did i leave off?
AH! yes, that's right. Day 4......
Day 4 is when things really started getting FUN... it was my first "double-dose" day.
First dose of radiation at 8 am... Not so bad.
then back to the lodge.
6 hrs of feeling like crap.
Then back to the cancer center for another dose.
That night wasn't all too bad, Only one really good bout of nausea and pain that made me feel like dying.
Woke up Friday morning, Not feeling too great. Slammed back a bottle of ensure, some pain meds, some appetite increaser's, some anti-seizures', some anti swellings'. and some "anti-all-the-other-drugs-your-taking" pills to make em all get along and play nice in my tummy. and off to radiation.
2 hrs later, and again. I'm feeling way too good right now. this CAN'T be good.
oh well, it's Friday, and I get to go home for the weekend. It'll be so nice to spend some time with my family, sleep in my own bed, see my puppy Charlie, and feel normal for a day or two. right??
Saturday Morning:
Today is not going to be a good day.
I woke up to the feeling of being electrically shocked straight to the center of my face. I'm pretty sure my entire body left the mattress. OUCH.
You'd think after dealing with this crap since 2010, I'd be a little more accustomed to some of the pains and problems associated with it.
But i'll tell ya, waking up to that shocking sensation in your face NEVER gets any easier. It's like some invisible man walks up and just full on punches you in the face, with electrically charged gloves on. sometimes it hits me so hard it makes me jump, and make some sort of painful, confused sound that always seems to startle anyone within 15 feet of me, causing them all to jump away looking like their waiting for the invisible man to strike them next.
Days that start with the electrics, never go well.
Sunday the 19th 2012
SHOOT ME NOW.....
PLEASE.
This is absolutely ridiculous. Something has to be wrong. I haven't had radiation in roughly 48 hrs... How can I feel this bad? It feels like its 110 degrees inside my skull. Every muscle hurts, my pulse pounds in my eyeballs so hard it blurs my vision with every beat. Deep breaths are like breathing through a hot, soaking wet cloth.
I don't understand how my body can so BADLY want nothing more than to puke, and be rid of this feeling, but NOTHING COMES.
Sunday turned out to be the worst day I have ever experienced. Through out the first round of cancer, through all the surgeries, the missing body parts, and the close calls, I have NEVER in my life felt as close to death as I did on Sunday. Had i not had Carla, the kids, and my family with me, I would have gone completely out of my mind.
Crossing my fingers that Monday is better.
Monday was a new day. I woke with good feelings, ate breakfast, ate lunch, and had no problems. had a minor nausea bout in the afternoon, but had something to eat as soon as it started and things got better almost immediately.
that brings us up to date for today.
Today has been a relatively great day. I have been on top of my my calorie intake, and am trying to keep a log of everything i eat so that i can figure out how much i need to eat daily in order to keep the nausea and pain at bay. I managed to have only 2 TINY bouts of problems today, and they passed within 10 minutes...I think i might be figuring this beast out! however, I will wait until I see how tomorrow goes before I get too excited. things change in an instant these days, so I have no choice but to expect the worst, and be happy when it comes out better than i expected. But i have that funny feeling again that today was just TOO good.
I'm gonna pay for it tomorrow.
Take care all, and as always,
Thank you so much for sharing this experience with me. Thank you for your kind words, your encouragement, and your letters. It helps me through my days.
until next time.
Mark,
I fully expected to be able to keep up with this on a day by day basis. However, it has become apparent that this is not the case. I figured I'd at least be able to sit down at some point each night before bed and get something on here, but by the time my days catch up with me, it's late at night and I am DONE.
I will do my best to stay on top of it as often as possible.
So, where did i leave off?
AH! yes, that's right. Day 4......
Day 4 is when things really started getting FUN... it was my first "double-dose" day.
First dose of radiation at 8 am... Not so bad.
then back to the lodge.
6 hrs of feeling like crap.
Then back to the cancer center for another dose.
That night wasn't all too bad, Only one really good bout of nausea and pain that made me feel like dying.
Woke up Friday morning, Not feeling too great. Slammed back a bottle of ensure, some pain meds, some appetite increaser's, some anti-seizures', some anti swellings'. and some "anti-all-the-other-drugs-your-taking" pills to make em all get along and play nice in my tummy. and off to radiation.
2 hrs later, and again. I'm feeling way too good right now. this CAN'T be good.
oh well, it's Friday, and I get to go home for the weekend. It'll be so nice to spend some time with my family, sleep in my own bed, see my puppy Charlie, and feel normal for a day or two. right??
Saturday Morning:
Today is not going to be a good day.
I woke up to the feeling of being electrically shocked straight to the center of my face. I'm pretty sure my entire body left the mattress. OUCH.
You'd think after dealing with this crap since 2010, I'd be a little more accustomed to some of the pains and problems associated with it.
But i'll tell ya, waking up to that shocking sensation in your face NEVER gets any easier. It's like some invisible man walks up and just full on punches you in the face, with electrically charged gloves on. sometimes it hits me so hard it makes me jump, and make some sort of painful, confused sound that always seems to startle anyone within 15 feet of me, causing them all to jump away looking like their waiting for the invisible man to strike them next.
Days that start with the electrics, never go well.
Sunday the 19th 2012
SHOOT ME NOW.....
PLEASE.
This is absolutely ridiculous. Something has to be wrong. I haven't had radiation in roughly 48 hrs... How can I feel this bad? It feels like its 110 degrees inside my skull. Every muscle hurts, my pulse pounds in my eyeballs so hard it blurs my vision with every beat. Deep breaths are like breathing through a hot, soaking wet cloth.
I don't understand how my body can so BADLY want nothing more than to puke, and be rid of this feeling, but NOTHING COMES.
Sunday turned out to be the worst day I have ever experienced. Through out the first round of cancer, through all the surgeries, the missing body parts, and the close calls, I have NEVER in my life felt as close to death as I did on Sunday. Had i not had Carla, the kids, and my family with me, I would have gone completely out of my mind.
Crossing my fingers that Monday is better.
Monday was a new day. I woke with good feelings, ate breakfast, ate lunch, and had no problems. had a minor nausea bout in the afternoon, but had something to eat as soon as it started and things got better almost immediately.
that brings us up to date for today.
Today has been a relatively great day. I have been on top of my my calorie intake, and am trying to keep a log of everything i eat so that i can figure out how much i need to eat daily in order to keep the nausea and pain at bay. I managed to have only 2 TINY bouts of problems today, and they passed within 10 minutes...I think i might be figuring this beast out! however, I will wait until I see how tomorrow goes before I get too excited. things change in an instant these days, so I have no choice but to expect the worst, and be happy when it comes out better than i expected. But i have that funny feeling again that today was just TOO good.
I'm gonna pay for it tomorrow.
Take care all, and as always,
Thank you so much for sharing this experience with me. Thank you for your kind words, your encouragement, and your letters. It helps me through my days.
until next time.
Mark,
Wednesday, 15 February 2012
Radiation Day 1 / 2 / 3...
Radiation Day 1... :
Monday Feb 13, 2012 12:00p.m.
Just got checked into the lodge. Pretty nice little place. Had a small tour of the building, met some of the staff, and got my stuff into my room. Huge room......TWO beds....
Blech..... Room-mates.
So far they tell me I will have no roommates this week, so that will be nice.
Radiation at 3:00 p.m.....
So....Radiation went well. I was definitely right about all the creepy noises, lasers, and machines. Your lying there, bolted to a table by your head, and these machines sound like you are inside a Boeing 747 turbine that's just warming up. Heart rate is definitely a little heightened right now. It is ridiculous how anxiety ridden I am at the moment. I can feel my pulse in every pore on my body. My eyes actually blur from time to time as the heart beats so hard. I know i'm seconds away from that first blast, and I know they say I won't feel anything, but man, is that ever hard to believe right now....
And then it starts. the most loud, horrible noise you could imagine blasts directly into your face. I can't describe the sound, other than to say it's an ugly noise. I mean, really, the people that made this machine knew that there would be living human beings lying in it one day, going through this, you'd think they could have made the sound effects a little more appealing. I'm not asking for the care-bear count down or anything. but this is a bit much. It If the noise were it's own language it would be screaming obscenities and dirty words of anger and pain.
BUT... they were right....No pain. No sensation of any sort. Just the anxiety.
The noise gets a little more tolerable once you make that realization. But it's still ugly.
15 minutes, in and out. I can handle this. :D
Went back to my room, laid down, and was OUT. didn't realize it would make me tired so fast, but I also wonder if that had a bit to do with the anxiety, and stress too. woke up at almost 11 pm. went for a walk, went to bed.
Radiation Day 2... :
Tuesday Feb 14, 2012 9:20a.m.
In and out again, 15 minutes of Listening to Alien Vs predator fighting away at my cancer. I imagine if that were the actual fight going on, Alien would win. Alien has the acid spit. Acid spit would be bad for cancer I would assume.
I'm surprised at how i have a lot of muscle tension and pain already in the neck. Mostly along the scars from last years surgery, but is it ever hard to turn and look left or right. Very tired again all day. It starts about an hr to an hr and a half after each dose, where its like a switch is flicked and i suddenly feel like i haven't slept in days.
The people here at the lodge are amazing. They are all so involved in making sure that you have what you need, and that you are taken care of. I'll admit I feel a bit like a kid in a new school. I walked into the dinner room/cafeteria today, to realize I'm the only patient under the age of 60. I picked an empty seat, grabbed some dinner, and waited until everybody had had their stare, and went back to their own dinners. Lot's of whispers amongst them, but I figure they're trying to be polite.....
But i think i became public enemy #1 to some of them when i loaded up my dinner with salt. The look of shock on some of their faces...mouths wide open looking at me like they are trying to remember the last time they had salt on their dinner. I am really sorry if that sounds bad, but you should have seen the faces.
Radiation Day 3... :
Wednesday Feb 15, 2012 8:00 a.m.
So the alarm clock in my room is broken. Thankfully i was smart and set my cell phone as a back up! only slept in by 10 mins. so I still made my Appt. on time :) didn't sleep a whole lot last night..but 5 hrs is pretty good for me these days. Pain is definitely a little more prominent today. the neck muscles are much tighter than yesterday, and my tongue is starting to feel as if I poured boiling water on the right side. But again, the drugs are making it tolerable, so I guess I really shouldn'tcomplain because it's only going to get worse.
The neaseau is definitely up there today. Comes in waves from head to toe with the sleepiness. had to come to my room to lay down before I fall over. Think I'll take a nap and see if I can feel human a little later.
Thank you to all who have sent me private messages this week. I have read them all, and will write you back soon. But as the screen in front of me is going in and out of focus at will, I think I need some sleep.
Take care....
More tomorrow.
Mark
Monday Feb 13, 2012 12:00p.m.
Just got checked into the lodge. Pretty nice little place. Had a small tour of the building, met some of the staff, and got my stuff into my room. Huge room......TWO beds....
Blech..... Room-mates.
So far they tell me I will have no roommates this week, so that will be nice.
Radiation at 3:00 p.m.....
So....Radiation went well. I was definitely right about all the creepy noises, lasers, and machines. Your lying there, bolted to a table by your head, and these machines sound like you are inside a Boeing 747 turbine that's just warming up. Heart rate is definitely a little heightened right now. It is ridiculous how anxiety ridden I am at the moment. I can feel my pulse in every pore on my body. My eyes actually blur from time to time as the heart beats so hard. I know i'm seconds away from that first blast, and I know they say I won't feel anything, but man, is that ever hard to believe right now....
And then it starts. the most loud, horrible noise you could imagine blasts directly into your face. I can't describe the sound, other than to say it's an ugly noise. I mean, really, the people that made this machine knew that there would be living human beings lying in it one day, going through this, you'd think they could have made the sound effects a little more appealing. I'm not asking for the care-bear count down or anything. but this is a bit much. It If the noise were it's own language it would be screaming obscenities and dirty words of anger and pain.
BUT... they were right....No pain. No sensation of any sort. Just the anxiety.
The noise gets a little more tolerable once you make that realization. But it's still ugly.
15 minutes, in and out. I can handle this. :D
Went back to my room, laid down, and was OUT. didn't realize it would make me tired so fast, but I also wonder if that had a bit to do with the anxiety, and stress too. woke up at almost 11 pm. went for a walk, went to bed.
Radiation Day 2... :
Tuesday Feb 14, 2012 9:20a.m.
In and out again, 15 minutes of Listening to Alien Vs predator fighting away at my cancer. I imagine if that were the actual fight going on, Alien would win. Alien has the acid spit. Acid spit would be bad for cancer I would assume.
I'm surprised at how i have a lot of muscle tension and pain already in the neck. Mostly along the scars from last years surgery, but is it ever hard to turn and look left or right. Very tired again all day. It starts about an hr to an hr and a half after each dose, where its like a switch is flicked and i suddenly feel like i haven't slept in days.
The people here at the lodge are amazing. They are all so involved in making sure that you have what you need, and that you are taken care of. I'll admit I feel a bit like a kid in a new school. I walked into the dinner room/cafeteria today, to realize I'm the only patient under the age of 60. I picked an empty seat, grabbed some dinner, and waited until everybody had had their stare, and went back to their own dinners. Lot's of whispers amongst them, but I figure they're trying to be polite.....
But i think i became public enemy #1 to some of them when i loaded up my dinner with salt. The look of shock on some of their faces...mouths wide open looking at me like they are trying to remember the last time they had salt on their dinner. I am really sorry if that sounds bad, but you should have seen the faces.
Radiation Day 3... :
Wednesday Feb 15, 2012 8:00 a.m.
So the alarm clock in my room is broken. Thankfully i was smart and set my cell phone as a back up! only slept in by 10 mins. so I still made my Appt. on time :) didn't sleep a whole lot last night..but 5 hrs is pretty good for me these days. Pain is definitely a little more prominent today. the neck muscles are much tighter than yesterday, and my tongue is starting to feel as if I poured boiling water on the right side. But again, the drugs are making it tolerable, so I guess I really shouldn'tcomplain because it's only going to get worse.
The neaseau is definitely up there today. Comes in waves from head to toe with the sleepiness. had to come to my room to lay down before I fall over. Think I'll take a nap and see if I can feel human a little later.
Thank you to all who have sent me private messages this week. I have read them all, and will write you back soon. But as the screen in front of me is going in and out of focus at will, I think I need some sleep.
Take care....
More tomorrow.
Mark
Monday, 13 February 2012
Flight, We are go for launch...
Monday, Feb 13th, 2012...... 1:17 a.m.
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I have lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do."
~Eleanor Roosevelt~
Once again, (yet to no surprise) sleep eludes me.
T minus 00days : 13hrs : 40 minutes to go time.
Just reading it back makes my heart beat so hard my entire body twitches with every beat.
I can't imagine how hard it's going to beat when they put me in my radiation shell and bolt me to that table... I'm sure the machine performing the radiation will make all kinds of creepy laser/spinning/whining/scary sounds that will just intensify things. I know they say it doesn't hurt while it's being done, but until it actually starts, and the machines are running, and I'm not feeling anything...I'm going to be internally going mentally bezerk. I know I'm already on a lot of drugs, but I'm hoping that an Ativan or two will at least help me breathe a little...
I move into the cancer lodge today sometime, and the first dose of radiation is scheduled for 3:00p.m.
I'll stay in the lodge Monday to Friday's. It is closed for the weekends. I'm going to come home this first weekend to see my family, and attempt to hang on to one last week/weekend of feeling like a normal human being living a normal life. I'd like to come home every weekend, but I have no idea what to expect, and I have made temporary back-up plans to stay in Victoria on weekends should I not be up for the commute to and from the hospital once this really starts to beat me down.
Assuming all goes well right from the start, I'll have radiation every day except weekends for 6 weeks.
If once we get things moving, we discover any problems or complications, we'll stop the treatment and re-assess our options.
I'm going to try my best to make this Blog a daily thing starting today. I've half worked up the nerve to give a video entry a shot, and I figure I should do that while I still have the ability to talk. Should it go well, I'll try to make those a regular occurrence as well, as long as I am physically able.
I'd also like to take a quick second to thank all my followers, and all the strangers who pass by this page and take the time to read. Your public comments, and private messages brighten up my day, each and every day.
I see comments from People I thought had long forgotten about me, from family, and even neighbors. It fills my heart knowing that you all have me in your thoughts.
I've gotten feed back from so many of you that you are all out there getting your Velscope's Done, and are spreading the word to get your friends and family screened.
I've even gotten word that one of you had abnormal cells found, and that you are already in the process of getting the problem taken care of before it has a chance to become something like my situation.
That right there nearly brings me to tears. The one thing I hoped to achieve with this page has already become a reality. I have made a difference....
Where do I go from here??
So I ask of you this.
Send me your questions.
What do you want to know about my situation? what is something you'd like me to write about? any suggestions as to how to make this page better? or more informative?
I'm looking for any feedback, I write for the people who want to read, now I just need to know a little more about what they WANT to read.
I'm VERY open book throughout this, and I will try to answer ANY questions posed to me. you can leave a comment here, or you can email me privately if you don't want your name published with the question, and I will keep it anonymous.
I can be reached at cancerheadsup@hotmail.ca
Thank you all again for taking the time.
We'll talk soon :)
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, "I have lived through this horror. I can take the next thing that comes along." . . . You must do the thing you think you cannot do."
~Eleanor Roosevelt~
Once again, (yet to no surprise) sleep eludes me.
T minus 00days : 13hrs : 40 minutes to go time.
Just reading it back makes my heart beat so hard my entire body twitches with every beat.
I can't imagine how hard it's going to beat when they put me in my radiation shell and bolt me to that table... I'm sure the machine performing the radiation will make all kinds of creepy laser/spinning/whining/scary sounds that will just intensify things. I know they say it doesn't hurt while it's being done, but until it actually starts, and the machines are running, and I'm not feeling anything...I'm going to be internally going mentally bezerk. I know I'm already on a lot of drugs, but I'm hoping that an Ativan or two will at least help me breathe a little...
I move into the cancer lodge today sometime, and the first dose of radiation is scheduled for 3:00p.m.
I'll stay in the lodge Monday to Friday's. It is closed for the weekends. I'm going to come home this first weekend to see my family, and attempt to hang on to one last week/weekend of feeling like a normal human being living a normal life. I'd like to come home every weekend, but I have no idea what to expect, and I have made temporary back-up plans to stay in Victoria on weekends should I not be up for the commute to and from the hospital once this really starts to beat me down.
Assuming all goes well right from the start, I'll have radiation every day except weekends for 6 weeks.
If once we get things moving, we discover any problems or complications, we'll stop the treatment and re-assess our options.
I'm going to try my best to make this Blog a daily thing starting today. I've half worked up the nerve to give a video entry a shot, and I figure I should do that while I still have the ability to talk. Should it go well, I'll try to make those a regular occurrence as well, as long as I am physically able.
I'd also like to take a quick second to thank all my followers, and all the strangers who pass by this page and take the time to read. Your public comments, and private messages brighten up my day, each and every day.
I see comments from People I thought had long forgotten about me, from family, and even neighbors. It fills my heart knowing that you all have me in your thoughts.
I've gotten feed back from so many of you that you are all out there getting your Velscope's Done, and are spreading the word to get your friends and family screened.
I've even gotten word that one of you had abnormal cells found, and that you are already in the process of getting the problem taken care of before it has a chance to become something like my situation.
That right there nearly brings me to tears. The one thing I hoped to achieve with this page has already become a reality. I have made a difference....
Where do I go from here??
So I ask of you this.
Send me your questions.
What do you want to know about my situation? what is something you'd like me to write about? any suggestions as to how to make this page better? or more informative?
I'm looking for any feedback, I write for the people who want to read, now I just need to know a little more about what they WANT to read.
I'm VERY open book throughout this, and I will try to answer ANY questions posed to me. you can leave a comment here, or you can email me privately if you don't want your name published with the question, and I will keep it anonymous.
I can be reached at cancerheadsup@hotmail.ca
Thank you all again for taking the time.
We'll talk soon :)
Wednesday, 1 February 2012
"Uhhhhhh......Houston?...We have a problem..."
"We have to cancel the radiation immediately." "suffering" "book a CT" "Cancel the treatment center." "Much worse than we thought" "inform his oncologist" "Necrosis" "new problems" "spreading to the bone" "New radiation shell" "40% chance" "have to make a decision" "I'm so sorry" "poor survival rate" "permanet disabilities" "back to the drawing board.""life insurance?" "torture" "surgery first" "not enough time to heal" "dying flesh" "more pain" "maybe 5 good years..." "10 yrs of low quality of life.
"I'm sorry to tell you..."
"If I treat you..."
"It'll kill you."
Yah.....that was about 2 minutes of my life on Monday.
So, As the title suggests; Yes. We have a problem.
We actually have several problems.
All procedures are not ready for launch.
All systems are NOT go.
Yesterday, In a very short time, It felt like we headed straight into a crash landing before we'd even gotten off the ground.
I've been preparing myself mentally, and physically for weeks now. trying to to "pep talk" myself into believing that I have what it is going to take to get through this. I've been practically living off of Ensure and High calorie meal drinks trying to stop the weight loss. tying to get myself as healthy and prepared as I could possibly be. And with less than 20 hrs until my first scheduled dose of radiation....
The plug gets pulled on the whole kit and kabootle.
It turns out the cancer is changing the structure and density of the bones in my face.
This is making it impossible for my face to hang on to my teeth anymore. So every time I chew, I am causing little amounts of damage inside the jaw bones, which in turn is also damaging the soft tissues surrounding.
Alright, I can handle that... some dental work, and we're all good, right?
RIGHT????
Wrong...
Now, keep in mind, I am still learning a lot. And I'll admit up front that due to the high number, and amounts of pain medications I am on these days, my memory retention is kinda crap as well. So some of this is confusing, but i'm doing my best :)
They can't do the radiation now, because the damaged tissues and bones that are already present would be unable to withstand the radiation. Essentially what they are telling me is that if they hit me with the radiation, it will effectively KILL the tissue, and not just damage it more. This killing of the tissue would lead to something called necrosis. the flesh would die, inside of me, and then begin to rot like a corpse. My life expectancy would be demoted to mere weeks, if that. In the end, the doctors words were "If we start the radiation tomorrow, I would give you about a 5 percent chance of making it to your 30th birthday, So at this point I am not prepared to offer you radiation."
(BTW, my 30th birthday is only 29 days away, on March 1st.)
So, What do we do then?
Well,
Tomorrow?
WE FEAST.
Why feast?
Because as of 9 am Thursday morning, I will no longer have any teeth.
They are removing every single tooth, not that I have many left from the first bout of cancer, but the ones i do have were the only ones i was able to eat solid food with.
And due to the whole bone structure / fake tongue thing, dentures aren't an option.
As it turns out, implants may not even be a real option down the road because of the jaw bone problems and putting in "mounts".
So Wednesday will be the last day i get to actually chew solid food for at least a couple years now.
I'm gonna miss corn on the cob.
And the letter T.
It's only Tuesday night. I don't lose my teeth till Thursday, and I ALREADY miss the letter T :(
So we remove the teeth... Then we start a course of antibiotics, more pain meds (albeit these are REALLY good drugs, lol), and hold our breath for a couple weeks.
As long as we can avoid any complications such as Dry socket, Infections, any new illness, or post-op problems, Then we will re-assess and see how much of the mouth has healed.
If it is in good enough condition that the doctors feel we can safely start the radiation, then we will.
The down-sides are 1) We have to sit and wait for the mouth to heal, which just equals MORE time that this cancer is allowed to hang out, do what it wants, go where it wants. and 2) because there is already damage, and we've JUST freshly healed from MORE damage, the radiation is still significantly more dangerous then it already was in the first place. So even after all the healing, there is still a level of danger and risk associated with the necrosis.
So then we start the radiation.
They WERE telling me 40-60% chance of beating this thing, Now they are saying it's closer to the 40%. BUT.....there is still hope :)
So I had to go and ask, "Well, what happens if the radiation doesn't work? or we have to stop it because it's killing me?"
MENTAL NOTE ****** DO NOT ASK QUESTIONS OF YOUR DOCTOR THAT YOU ARE NOT YET PREPARED TO HEAR AN ANSWER TO ******
Should we find ourselves in that predicament, there is a "Hail Mary" surgery that would see me lose my entire tongue, the larger portion of my esophagus, and my vocal chords. We would have to bypass food intake, and I would have a permanent feeding device attached. The Quality of life would be poor, but it would possibly give me another 10 years of life on this amazing planet.
Should I find myself staring that challenge in the face, then I will face it head on. I will kick, scream, cry, crawl, fight, and learn my way into a new way of life, and a new way of living it.
I have never in my life been more terrified than I find myself today. I have never been more angry than I find myself today.
My fingers resist the words as I try to type them... they're as afraid to ask as I am....
What can tomorrow possibly hold?
"I'm sorry to tell you..."
"If I treat you..."
"It'll kill you."
Yah.....that was about 2 minutes of my life on Monday.
So, As the title suggests; Yes. We have a problem.
We actually have several problems.
All procedures are not ready for launch.
All systems are NOT go.
Yesterday, In a very short time, It felt like we headed straight into a crash landing before we'd even gotten off the ground.
I've been preparing myself mentally, and physically for weeks now. trying to to "pep talk" myself into believing that I have what it is going to take to get through this. I've been practically living off of Ensure and High calorie meal drinks trying to stop the weight loss. tying to get myself as healthy and prepared as I could possibly be. And with less than 20 hrs until my first scheduled dose of radiation....
The plug gets pulled on the whole kit and kabootle.
It turns out the cancer is changing the structure and density of the bones in my face.
This is making it impossible for my face to hang on to my teeth anymore. So every time I chew, I am causing little amounts of damage inside the jaw bones, which in turn is also damaging the soft tissues surrounding.
Alright, I can handle that... some dental work, and we're all good, right?
RIGHT????
Wrong...
Now, keep in mind, I am still learning a lot. And I'll admit up front that due to the high number, and amounts of pain medications I am on these days, my memory retention is kinda crap as well. So some of this is confusing, but i'm doing my best :)
They can't do the radiation now, because the damaged tissues and bones that are already present would be unable to withstand the radiation. Essentially what they are telling me is that if they hit me with the radiation, it will effectively KILL the tissue, and not just damage it more. This killing of the tissue would lead to something called necrosis. the flesh would die, inside of me, and then begin to rot like a corpse. My life expectancy would be demoted to mere weeks, if that. In the end, the doctors words were "If we start the radiation tomorrow, I would give you about a 5 percent chance of making it to your 30th birthday, So at this point I am not prepared to offer you radiation."
(BTW, my 30th birthday is only 29 days away, on March 1st.)
So, What do we do then?
Well,
Tomorrow?
WE FEAST.
Why feast?
Because as of 9 am Thursday morning, I will no longer have any teeth.
They are removing every single tooth, not that I have many left from the first bout of cancer, but the ones i do have were the only ones i was able to eat solid food with.
And due to the whole bone structure / fake tongue thing, dentures aren't an option.
As it turns out, implants may not even be a real option down the road because of the jaw bone problems and putting in "mounts".
So Wednesday will be the last day i get to actually chew solid food for at least a couple years now.
I'm gonna miss corn on the cob.
And the letter T.
It's only Tuesday night. I don't lose my teeth till Thursday, and I ALREADY miss the letter T :(
So we remove the teeth... Then we start a course of antibiotics, more pain meds (albeit these are REALLY good drugs, lol), and hold our breath for a couple weeks.
As long as we can avoid any complications such as Dry socket, Infections, any new illness, or post-op problems, Then we will re-assess and see how much of the mouth has healed.
If it is in good enough condition that the doctors feel we can safely start the radiation, then we will.
The down-sides are 1) We have to sit and wait for the mouth to heal, which just equals MORE time that this cancer is allowed to hang out, do what it wants, go where it wants. and 2) because there is already damage, and we've JUST freshly healed from MORE damage, the radiation is still significantly more dangerous then it already was in the first place. So even after all the healing, there is still a level of danger and risk associated with the necrosis.
So then we start the radiation.
They WERE telling me 40-60% chance of beating this thing, Now they are saying it's closer to the 40%. BUT.....there is still hope :)
So I had to go and ask, "Well, what happens if the radiation doesn't work? or we have to stop it because it's killing me?"
MENTAL NOTE ****** DO NOT ASK QUESTIONS OF YOUR DOCTOR THAT YOU ARE NOT YET PREPARED TO HEAR AN ANSWER TO ******
Should we find ourselves in that predicament, there is a "Hail Mary" surgery that would see me lose my entire tongue, the larger portion of my esophagus, and my vocal chords. We would have to bypass food intake, and I would have a permanent feeding device attached. The Quality of life would be poor, but it would possibly give me another 10 years of life on this amazing planet.
Should I find myself staring that challenge in the face, then I will face it head on. I will kick, scream, cry, crawl, fight, and learn my way into a new way of life, and a new way of living it.
I have never in my life been more terrified than I find myself today. I have never been more angry than I find myself today.
My fingers resist the words as I try to type them... they're as afraid to ask as I am....
What can tomorrow possibly hold?
Monday, 16 January 2012
One Simple Test...
First over-nighter in the hospital tomorrow. Just a simple procedure, so hopefully I'll only be in there for the one night.I'll probably be back sometime around friday with some good info and links.
Until all this started back in 2010, I had never heard of a machine called a "Velscope".
It is a little device that most dentists have in their offices, but no one seems to know about.
It is a device that can save lives, and more people need to know about it.
The Velscope is a device that helps doctors detect cancerous and pre-cancerous cells and lesions, both on the surface, and below.
The examination is completely non-invasive, painless, and takes only just mere minutes to complete.
Oral cancer rates have been climbing at alarming speeds among people in my age group in recent years. I would bet that a large number of those diagnosed had never heard of a Velscope either.
So now all of you HAVE heard of a Velscope.
I beg you all to ask your dentist for a Velscope exam at your next visit...Encourage your friends and family to do the same.
It's 10 minutes of your life....and it could ultimately save your life.
don't think "It could never happen to me"
I sure didn't think it could.
*More information on the Velscope can be found at Velscope FAQ
Until all this started back in 2010, I had never heard of a machine called a "Velscope".
It is a little device that most dentists have in their offices, but no one seems to know about.
It is a device that can save lives, and more people need to know about it.
The Velscope is a device that helps doctors detect cancerous and pre-cancerous cells and lesions, both on the surface, and below.
The examination is completely non-invasive, painless, and takes only just mere minutes to complete.
Oral cancer rates have been climbing at alarming speeds among people in my age group in recent years. I would bet that a large number of those diagnosed had never heard of a Velscope either.
So now all of you HAVE heard of a Velscope.
I beg you all to ask your dentist for a Velscope exam at your next visit...Encourage your friends and family to do the same.
It's 10 minutes of your life....and it could ultimately save your life.
don't think "It could never happen to me"
I sure didn't think it could.
*More information on the Velscope can be found at Velscope FAQ
Wednesday, 11 January 2012
Let us all stand and salute those who support
I've been trying to decide where to begin with this site, and how to make it something that can help others in similar situations. So I asked myself "What is the first thing I think of when I remember all this starting?"
And the answer is "My support."
When I got my initial diagnosis in 2010, I can remember almost feeling a little overwhelmed at how much support I had. In the first couple weeks after I made it publicly known I was sick, my phone rang constantly. I received calls from friends I hadn't seen in 5 years, Emails from people i'd worked with when i was 20. Everybody was sending well-wishes, offers of prayer, words of encouragement, and uplifting stories of their loved ones' own triumphs over illness.
Every last one of those well wishes, and kind words played such an integral role in my beating this thing. From the smallest of "Sorry to hear" messages, to those more directly involved.
And you know, Throughout this entire experience, support has been the one constant.
It's there from the second you find out.
It's there holding you up while your world spins out of control, telling you "You can do this"
It's there through the pain, the tears, the laughter, and the fear.
It's there to celebrate your progress, and to carry you through your setbacks.
It's there when you wake up, telling you everything went well.
It's there to help tend to your wounds, and it's there as you start to recover.
And it's always there, happy to remind you "You did it."
So for any of you who have ever found yourself offering up a shoulder to cry on, a hand to hold, or something as simple as a smile, and a word of faith... To you I stand and salute.
The love, care, and compassion that so many of you, so willingly volunteer, is the motivation to push forward,
You are the constant reminder that no matter how dark the road may be, we are never walking alone.
So please, take a moment to thank someone in your support group, they probably don't even realize how much they matter.
And the answer is "My support."
When I got my initial diagnosis in 2010, I can remember almost feeling a little overwhelmed at how much support I had. In the first couple weeks after I made it publicly known I was sick, my phone rang constantly. I received calls from friends I hadn't seen in 5 years, Emails from people i'd worked with when i was 20. Everybody was sending well-wishes, offers of prayer, words of encouragement, and uplifting stories of their loved ones' own triumphs over illness.
Every last one of those well wishes, and kind words played such an integral role in my beating this thing. From the smallest of "Sorry to hear" messages, to those more directly involved.
And you know, Throughout this entire experience, support has been the one constant.
It's there from the second you find out.
It's there holding you up while your world spins out of control, telling you "You can do this"
It's there through the pain, the tears, the laughter, and the fear.
It's there to celebrate your progress, and to carry you through your setbacks.
It's there when you wake up, telling you everything went well.
It's there to help tend to your wounds, and it's there as you start to recover.
And it's always there, happy to remind you "You did it."
So for any of you who have ever found yourself offering up a shoulder to cry on, a hand to hold, or something as simple as a smile, and a word of faith... To you I stand and salute.
The love, care, and compassion that so many of you, so willingly volunteer, is the motivation to push forward,
You are the constant reminder that no matter how dark the road may be, we are never walking alone.
So please, take a moment to thank someone in your support group, they probably don't even realize how much they matter.
Monday, 9 January 2012
The Story Behind Round 1
So, I originally had typed up about a 3 to 4 page story line of events, from right before diagnosis, all the way to the day i started recovery. It was very long winded, and it contained a lot more of the personal stuff, and alot of play by play through it all. I figured i'd type up a more short form version so anyone who reads this isn't forced to put an hr aside just to read it all. Should i get enough requests for it, I'll post the long version at a later time. I couldn't decide what people might want more, so I went with the short version up front :
In October of 2010, I was diagnosed with Oral Cancer (Squamous Cell Carcinoma)
On November 5th of 2010, I underwent surgery to remove the tumor.
Doctors removed about 30% of my tongue on the right side, taking the tumor with it.
Later tests revealed that there were more tumors in my tongue, neck, and lymph nodes.
On January 27th, 2011 I had another surgery. This time they took the entire right half of my tongue.
They took a large chunk of flesh from my left forearm to replace the tongue.
Then they took a large skin graft from my left thigh to repair the left forearm.
They cut me from behind the right ear all the way to the base of my chin, down to my right collar bone.
47 staples in my head.
I had to learn how to speak again, and how to eat again.
It was long, hard, and rough, but I got through it.
In march of 2011, they told me We had beat it. CT scans and bloodwork had all come back clean.
Now all that was left was figuring out how to start feeling normal again.
Who knows, maybe I'll make it to 30 after all.
In October of 2010, I was diagnosed with Oral Cancer (Squamous Cell Carcinoma)
On November 5th of 2010, I underwent surgery to remove the tumor.
Doctors removed about 30% of my tongue on the right side, taking the tumor with it.
Later tests revealed that there were more tumors in my tongue, neck, and lymph nodes.
On January 27th, 2011 I had another surgery. This time they took the entire right half of my tongue.
They took a large chunk of flesh from my left forearm to replace the tongue.
Then they took a large skin graft from my left thigh to repair the left forearm.
They cut me from behind the right ear all the way to the base of my chin, down to my right collar bone.
47 staples in my head.
I had to learn how to speak again, and how to eat again.
It was long, hard, and rough, but I got through it.
In march of 2011, they told me We had beat it. CT scans and bloodwork had all come back clean.
Now all that was left was figuring out how to start feeling normal again.
Who knows, maybe I'll make it to 30 after all.
Sunday, 8 January 2012
First Entry... A brief "Why I'm Here"......1/8/2012
To all who read,
My name is Mark. I am 29 years old, and live in British Columbia, Canada.
In 19 days, I would have marked my first anniversary being cancer free. However, this past Friday, I was informed that I will not be making that celebration, as my cancer has returned.
I have already beat this cancer once, so I have high hopes, a positive attitude, and motivation to fight.
That being said, I am also pretty well-educated on the type of cancer I have, and I am aware that it's return drastically decreases my chances. However, I have had a life full of "against-all-odds" moments, and have always come out on top.
When I got my first diagnosis, I can remember having so many questions. and every time I got one of those questions answered, it only brought out another hundred questions I hadn't even thought of yet. For me, knowledge and foresight was absolute power. I figured if I knew what to expect, than I was already on the road to recovery before I'd begun the fight.
Now, with it returning, I am again filled with so many questions...so much fear of the unknown...
I feel exactly like I did the first time.
How is it, that with all the questions I've already had answered, all the experiences I've gained with the first fight, and all the research I have done, that I still feel like I have no idea what is going on? or what's to come?
So I've decided that no matter how this fight goes, I want it to be more than just another "experience" under my belt. I want to try and use it to help someone else.
I want to start documenting this, from the get go, I'll be recording video entries when I can, and possible write-ups such as this. and I'd like to put it all into one place where people in my position can access it, and maybe they too will be able to go into their own fight feeling like they have a "heads-up" on things.
If I can help but one person feel a little less unsure, scared, or alone in their fight, then I have accomplished my goal with this blog. I'm sure that as things go, I'm sure there will be changes to this page, the layout, and maybe even changes to what I hope to achieve through this outlet.
I'm usually pretty keen on all things internet/computer related, but admittedly have no idea what I'm doing here so I apologize in advance if this seems at all amateur or akward.
My name is Mark. I am 29 years old, and live in British Columbia, Canada.
In 19 days, I would have marked my first anniversary being cancer free. However, this past Friday, I was informed that I will not be making that celebration, as my cancer has returned.
I have already beat this cancer once, so I have high hopes, a positive attitude, and motivation to fight.
That being said, I am also pretty well-educated on the type of cancer I have, and I am aware that it's return drastically decreases my chances. However, I have had a life full of "against-all-odds" moments, and have always come out on top.
When I got my first diagnosis, I can remember having so many questions. and every time I got one of those questions answered, it only brought out another hundred questions I hadn't even thought of yet. For me, knowledge and foresight was absolute power. I figured if I knew what to expect, than I was already on the road to recovery before I'd begun the fight.
Now, with it returning, I am again filled with so many questions...so much fear of the unknown...
I feel exactly like I did the first time.
How is it, that with all the questions I've already had answered, all the experiences I've gained with the first fight, and all the research I have done, that I still feel like I have no idea what is going on? or what's to come?
So I've decided that no matter how this fight goes, I want it to be more than just another "experience" under my belt. I want to try and use it to help someone else.
I want to start documenting this, from the get go, I'll be recording video entries when I can, and possible write-ups such as this. and I'd like to put it all into one place where people in my position can access it, and maybe they too will be able to go into their own fight feeling like they have a "heads-up" on things.
If I can help but one person feel a little less unsure, scared, or alone in their fight, then I have accomplished my goal with this blog. I'm sure that as things go, I'm sure there will be changes to this page, the layout, and maybe even changes to what I hope to achieve through this outlet.
I'm usually pretty keen on all things internet/computer related, but admittedly have no idea what I'm doing here so I apologize in advance if this seems at all amateur or akward.
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