Friday, 4 October 2013
Random Stuff While I Wait
Well just down here at the old PMH waiting for some appointments. Figured I'd kill sometime while I wait as I ran out of things to Google ... you know you have too much free time when....
During the course of the last nine months or so I've done more commuting in and around Toronto than I'd like but hey you do what you gotta do. I've actually become more patient driving believe it or not. I take my time if its busy and like to think I'm getting good with this. It still blows my mind though how stupid some people are. I mean there are certain basic things people should and could do to make life easier and safer for others. Makes me wonder if they're oblivious or just ignorant. Like driving in the appropriate lane for the speed you're driving. Why can't people understand the right lane is the driving lane and learn to how to merge and let people merge without braking. The gas pedal is an extremely effective way to moderate the speed of your vehicle. Why you need to use your brakes ... especially on an uphill grade on the highway is beyond me. Or using your headlights if its overcast or just plain dark. I'm begining to think not only day time running lights but lights in gerneral should come on with the engine then have to be manually turned off. Maybe we should all take a common sense driving course every few years ... except me anyway I'm a great driver ;) Those are my two biggest driving pet peeves right now I'm sure I'll find another one 2 minutes of getting in the car.
Yeah Yeah the the Dolphin's weak O line and cornerbacks got exposed on national TV Monday. Ah well, the Saints could have done that to most of the teams in the league in that spot. I will admit though we were playing over our heads and could be in for it again this week. Still a good start and I like this winning. Hope the Ti-Cats can take one tonight. How sweet that would be. Man it would be nice to have a team with a strong O line to cheer for... How bout them Browns. I've always kind of liked them too and find myself getting behind them ... helps they're winning haha. My Aunt will like to hear that ... not my cousin he owes me a beer because of them ... Cleveland Rocks!
Pagers going off time to go ...
Monday, 30 September 2013
Another Day
I've never really been on board with counting days. Goals are important so I see how people can use counting days to help achieve goals I've just never took that approach. Setting a date or time to complete a task I can see. Quitting something like smoking or drinking and counting days seems odd to me. If you quit you quit and that's awesome if that's what you want or need but why count days or months. To me it seems like your counting the till the next time. I suppose the longevity makes it seem more impressive but its that you did it is impressive to me. Anyway, I get asked by people and I guess its how they approach it doctors/nurses what day are you? I kept track at first too ... Probably because there was an updated calendar in the hospital room. Now every time someone asks me I either have to count or guess. I know two dates I'm keeping in mind and that's when they check my bone marrow for the first time post transplant around day 60 Oct. 22. Then day 100 which I've heard is a good indicator that you've passed through a critical period and if you do that with little to no complications prognosis is improved ... Dec. 1 but I've also heard day 120 so Dec 21 is in my back pocket. So other than those dates its another day post SCT. Not sure why I took the time to write that ... Must be bored waiting for the Dolphins game to start.
I was reminded yesterday it wasn't long ago I was locked up in the hospital for a while. You appreciate small things in life after you can't take advantage of them for a while then get them back. I really enjoyed the comfort of my bed last night. That and being able to open the window and hear some rain fall and crickets chirp. Much better than the noise of the HVAC system in the hospital ... Although I did have music to try and drown it out, no where close to the same as the comfort of home. The bike rides along the waterfront are more enjoyable than the bargain basement exercise bike I had in the room too ... Although the view was nice it didn't change and I didn't have a fan to get the wind blowing over my bald head. But yeah I'm glad to be home and appreciating simple things life has to offer. oh the food and access to the fridge and tv are markedly improved too sending moral through the roof.
Still dealing with this rash but its minor and doesn't bother me too much. Hopefully it will clear up soon and taper down the steroids. Other than that all seems good. Enjoy the nice Fall colours and weather. Cheers.
I was reminded yesterday it wasn't long ago I was locked up in the hospital for a while. You appreciate small things in life after you can't take advantage of them for a while then get them back. I really enjoyed the comfort of my bed last night. That and being able to open the window and hear some rain fall and crickets chirp. Much better than the noise of the HVAC system in the hospital ... Although I did have music to try and drown it out, no where close to the same as the comfort of home. The bike rides along the waterfront are more enjoyable than the bargain basement exercise bike I had in the room too ... Although the view was nice it didn't change and I didn't have a fan to get the wind blowing over my bald head. But yeah I'm glad to be home and appreciating simple things life has to offer. oh the food and access to the fridge and tv are markedly improved too sending moral through the roof.
Still dealing with this rash but its minor and doesn't bother me too much. Hopefully it will clear up soon and taper down the steroids. Other than that all seems good. Enjoy the nice Fall colours and weather. Cheers.
Wednesday, 18 September 2013
A New Pace
Well its been a while since I wrote an update ... suppose I've been lazy. Or maybe since I've been out for just over a week now I've been busy with freedom ... who knows ;) One thing I'll say has been a bit of a challenge over the last nine months since diagnosis and even a little more pronounced now, is adjusting to a new pace to live by. Not the end of the world and I know I've never been a ball of fire but takes some getting used to for a 31 year old. Suppose part of it is getting older, part the steroids I'm on, part new cells, partly getting over radiation, chemo and not eating for a week side effects. Yeah I guess theres been quite a bit to adapt to over the last almost month but it still takes some getting used to. I get around but walk slower (I know is that possible). Riding the bike but not as fast and gased after 5k. Need a little sit down after a shower and getting dressed. I guess you keep after it and it will get better but who has time to wait around for that haha. If that's my biggest complaint is learning to slow it down and learn to let it come to me a little more than I'm used to I'll take it ;) Reminds me of a saying my Grandpa had on his wall 'Lord grant me patience ... but hurry!'
-On prednisone for a minor gvh rash still which would be nice if that would go away. Doesn't really bother me and not all that noticeable.
-Lots of pills to remember to take at different times daily too which can be a pain. All to support health while the new immune system is being brought online.
-Laying low trying to be patient and do the right things over the next few months.
-Guess its 26% of the way to day 100 which I'm told is a milestone and so far so good in my books :)
-Lucky to have strength, motivation and support from so many family and friends to keep pushing me through this.
Thats all for now .... actually no I was really craving a beer today but have been good and havent had one in almost month .... which has to be a 16 year record .... someone crack a cold one for me!
Cheers!
-On prednisone for a minor gvh rash still which would be nice if that would go away. Doesn't really bother me and not all that noticeable.
-Lots of pills to remember to take at different times daily too which can be a pain. All to support health while the new immune system is being brought online.
-Laying low trying to be patient and do the right things over the next few months.
-Guess its 26% of the way to day 100 which I'm told is a milestone and so far so good in my books :)
-Lucky to have strength, motivation and support from so many family and friends to keep pushing me through this.
Thats all for now .... actually no I was really craving a beer today but have been good and havent had one in almost month .... which has to be a 16 year record .... someone crack a cold one for me!
Cheers!
Sunday, 8 September 2013
Into the Wild
Well I'm a Werewolf Baby and here I come ...
Haha well barring any set back between now and then I'll be getting outta here Tues and back out into the wild at day +18 post transplant. Not a record but hey. We had to spend a few days last week looking for the cause of fever that would come and go. Turns out a bit of a rash I was getting is GvH [graft vs host disease or graft vs hammer as I like to call it] which was causing the fevers. Little bit of a lot of prednisone and see ya later rash so long pantry. Pretty early for GvH I thought but apparently engrafting like wildfire and these guys are ready to go. This is also good as supposedly it means any leukemia cells left are under siege right now too lowering the odds of relapse. GvL [graft vs Leukemia]. Anyway good work men lets just tone it down on the skin here.
Nice to get out for sure but still have to realise up till +100 is a critical time and +365 being the next one with life stabilising a bit more after that. My immune system is like a babies now so I'll have to be careful.
Well, might as well make the most of the location and head down the elevator and grab a Tims before I make my football picks. Go Cats! I think thats who I was watching yesterday??
Cheers.
Haha well barring any set back between now and then I'll be getting outta here Tues and back out into the wild at day +18 post transplant. Not a record but hey. We had to spend a few days last week looking for the cause of fever that would come and go. Turns out a bit of a rash I was getting is GvH [graft vs host disease or graft vs hammer as I like to call it] which was causing the fevers. Little bit of a lot of prednisone and see ya later rash so long pantry. Pretty early for GvH I thought but apparently engrafting like wildfire and these guys are ready to go. This is also good as supposedly it means any leukemia cells left are under siege right now too lowering the odds of relapse. GvL [graft vs Leukemia]. Anyway good work men lets just tone it down on the skin here.
Nice to get out for sure but still have to realise up till +100 is a critical time and +365 being the next one with life stabilising a bit more after that. My immune system is like a babies now so I'll have to be careful.
Well, might as well make the most of the location and head down the elevator and grab a Tims before I make my football picks. Go Cats! I think thats who I was watching yesterday??
Cheers.
Tuesday, 3 September 2013
Hibernation
I know its a little early in the year for that but you gotta do what you gotta do.
-Have not eaten since day+6 its day+11 now.
-Drinking is extremely painful too ... hardly been drinking. They do a good job keeping you hydrated and this is to be expected.
-Mouth has been better last day or two its been mostly my throat and swallowing causing the issues.
-Morphine pump they got me hooked up on helps with the pain its at .5mg an hour and I can press the button and get another .5mg direct. That kept things interesting this long weekend and probably why I slept so much.
-Looks like stuff is happening. Some of my blood counts started to rise on day+9 [Neutrophils] and while they dropped slightly day+10 white blood count started coming up and platlets too.
-All encouraging news, looking forward to todays counts coming back and the throat to getting better.
-Had a great view of three days of the CNE air show from my room when I dragged my ass out of bed.
-Thats all for now, hope everyone enjoyed the long weekend. I'm going to press my button and sleep in a bit :)
-Have not eaten since day+6 its day+11 now.
-Drinking is extremely painful too ... hardly been drinking. They do a good job keeping you hydrated and this is to be expected.
-Mouth has been better last day or two its been mostly my throat and swallowing causing the issues.
-Morphine pump they got me hooked up on helps with the pain its at .5mg an hour and I can press the button and get another .5mg direct. That kept things interesting this long weekend and probably why I slept so much.
-Looks like stuff is happening. Some of my blood counts started to rise on day+9 [Neutrophils] and while they dropped slightly day+10 white blood count started coming up and platlets too.
-All encouraging news, looking forward to todays counts coming back and the throat to getting better.
-Had a great view of three days of the CNE air show from my room when I dragged my ass out of bed.
-Thats all for now, hope everyone enjoyed the long weekend. I'm going to press my button and sleep in a bit :)
Thursday, 29 August 2013
Its Official
My mouth is a traitor and has turned on me. Treasonist bastard. I'll be paying it back with copious amounts of spicy food once I'm on the mend and out of here. Despite my efforts of frequent mouth rinsing and oral hygiene it appears the doctors and nurses were correct when they warned me it was a matter of when. Looks like its an ensure diet for the next week or two and hopefully things don't get too exciting. I guess depending on pain etc morphine is the standard relief around here. I've never encountered it before but could make for some interesting blog posts in the future if I end up on that path. Nothing like some opaites to get the creative juices flowing. Oh well too bad it was smooth sailing up to this point at day +6. Will get through this but I might have to stop watching the food network for a while...
-Still riding the bike and working out.
-Not as easy to play it cool when an attractive nurse has you connected checking vitals.
'Why is your pulse rate so high?'
'uh I was just riding the bike'
'oh ok lets give it a min.'
'good idea'
-Blue Jays finally took a series from the Yankees ... yes I'm still watching like a sucker. They were the pre-season favourites to win the World Series? What a joke!
-Ti-Cats finally look like they can play defence ... uh oh take the over tomorrow night now ;)
-Enjoy the last long weekend of the summer everyone hopefully the weather holds out.
-Still riding the bike and working out.
-Not as easy to play it cool when an attractive nurse has you connected checking vitals.
'Why is your pulse rate so high?'
'uh I was just riding the bike'
'oh ok lets give it a min.'
'good idea'
-Blue Jays finally took a series from the Yankees ... yes I'm still watching like a sucker. They were the pre-season favourites to win the World Series? What a joke!
-Ti-Cats finally look like they can play defence ... uh oh take the over tomorrow night now ;)
-Enjoy the last long weekend of the summer everyone hopefully the weather holds out.
Tuesday, 27 August 2013
Superstition
I'm probably overdue for an update. Not that I've ever considered myself superstitious but it seems a rather fragile place I'm in right now and for the next week or two so I didn't want to jinx anything. My blood counts have been low as to be expected, relatively no white blood cells the last few days and until my new cells engraft I wont be having any ... maybe another week ... maybe two. As you can imagine until I can make my own white blood cells an infection could be a big problem for me. Not only that if there was some damage to my body I wouldn't be able to repair it. Thats where the mouth problems come in. Most people have problems with their mouth during this process ... big problems and have to live with this until their body is able to heal itself weeks down the road. While painful and limiting how much you eat if any and drink it can be a cause for infection. That is one of my biggest concerns right now is having my mouth turn on me. The docotors and nurses seemed to indicate it was a matter of when not if this would happen after the 'intense' conditioning regimen I went through prior to transplant. Well so far so good at day +4. The way I understand its a 5 part formula with 1 part hygiene and 4 parts luck so keep those positive vibes coming and I'll take care of the hygiene ;) I've also been watching what I eat so I don't score it and how much I talk which for me can be a challenge. Anyway thats the biggest thing thats been on my mind and the center of my OCD.
-Things going well up to now found my lock down routine and sticking with it.
-Still riding the bike and working out 2-3x a day which has some people pleasantly surprised.
-Spending time reading in the late morning/afternoon.
-Frequent mouth rinsing with the sodium bicarb solution at least every couple hours. After meals and sugary drinks for sure and force myself up a few times through the night which I think makes a big difference.
-Honey on cereal every morning and in tea ... I've convinced myself it helps my mouth and may be my secret weapon ... probably dumb luck more than anything but hey I'm going with it.
-frequent hand washing before and after meals for sure.
-Still have all my hair ... I was going to shave it since there is a high probability I'll loose it anyway but I'm curious and taking the wait and see approach now ... although that is the least of my concerns.
-All in all pretty uneventful and hoping it continues this way :)
-Things going well up to now found my lock down routine and sticking with it.
-Still riding the bike and working out 2-3x a day which has some people pleasantly surprised.
-Spending time reading in the late morning/afternoon.
-Frequent mouth rinsing with the sodium bicarb solution at least every couple hours. After meals and sugary drinks for sure and force myself up a few times through the night which I think makes a big difference.
-Honey on cereal every morning and in tea ... I've convinced myself it helps my mouth and may be my secret weapon ... probably dumb luck more than anything but hey I'm going with it.
-frequent hand washing before and after meals for sure.
-Still have all my hair ... I was going to shave it since there is a high probability I'll loose it anyway but I'm curious and taking the wait and see approach now ... although that is the least of my concerns.
-All in all pretty uneventful and hoping it continues this way :)
Friday, 23 August 2013
Happy Birthday to Me!
Well my new 'friends' showed up today! Transplant started at 14:35 and lasted about an hour. I introduced myself and they seem to be taking a liking to their new home ... we had a little private one on one and so far so good. I've heard some transplant patients refer to it as their 'Birthday' ... no cake today but hey I'll go with that ... pool party next year, my place! Having a birthday in November I always wanted to have a pool party for my birthday. Now its all about combining forces and getting better.
A few pictures of me from my computer I like
Golfing.
Golfing ... again :)
I'll get a dog one day I miss my fishing partner.
Golfing ... Muskoka Bay [striped down the middle no doubt!]
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Mojito at sunset!
A few pictures from my phone I like
Called in to work a while back when I got a call in the morning my Grandpa passed away ... got a cofee and went to the waterfront and found this :)
Nice relaxing sunset with a glass of wine on the beach.
Birdie on Sawmill #13.
Nice relaxing sunrise with a coffee in the park.
One of my first restaurant meals after getting out of the hospital in January with my best friend ... braised beef ribs, garlic mashed and frizzled onions ... yes please!
Thursday, 22 August 2013
Random Events/Musings
-One more round of radiation this afternoon ... transplant tomorrow then just gotta get on with the healing!
-They keep sending porters [Transporters] up to take me to radiation. They show up with wheelchairs but I walk so they leave them outside my room. Then when its done they say are you OK ... yup so I walk back myself. Got back the other afternoon and there were three wheelchairs outside my room ...
-Nothing to the radiation ... I asked but they don't have SPF 5000.
-They do play some good tunes for me. Stones, Blue Rodeo about 30-45min worth.
-Been busy so far going out for lunch and supper enjoying freedom before lock down tomorrow. Keg supper again last night and a beer with my brother and friend on a nice patio. Didn't realise I was going to have this freedom beforehand.
-Came back last night late and the nurses had done shift change ... one never seen me before and was startled to see someone come in so late.
'Uh can I help you?'
'Yeah just going to check in for the night.'
'Oh are you a patient?'
show wristband 'Yeah I think so' :)
-Doctor told me today my donor is B+ blood also so that won't change .... donate blood if you can it helps ... esp if you're B+ ;)
-I asked the nurse if it would help if I gave my new donor cells a little pep talk before to play nice with mine and we'll all get along. I can be pretty fun ... I promise we'll have some good times ... so good they'll never get published on here!
-Never been a big Blue Rodeo fan but started to listen to them a little ... got a kick listening to this song yesterday afternoon on the tanning bed ... thought I'd post the lyrics.
Sometimes you lose your head
Think of all the stupid things you've said
Pouring out of your mouth
Like rain through a broken windowpane
Nobody made you do it
There's a hoop and you jump through it
You made this mess all by yourself
What did you say?
I thought I said everything there was for me to say
How could you know?
I looked into her eyes, I thought they were telling me so
Now I don't want to be your cause for sympathy
I took my chances, eyes wide open
Stayed too long and the spell was broken
Nobody wants to see
The mess you become so easily
Crawling around and singing your sad songs
Late into the night
Must be the words you're choosing
The unconvincing smile you're using
Try and try again, you can't get it right
What did you do?
I poured my heart out til my words filled the room
How did it go?
She smiled and took my hand, said it's all just a little too soon.
Now I don't want to be your cause for sympathy
Save your tears, I never earned them
Lessons are there, but I never learn them at all
Every night the same old game
Fumbling around for some stranger's name
Or going out of your mind
Waiting for the phone to finally ring
I know life can be so messy
But you can't spend all your time confessing
Try saving something for yourself
What did you say?
I thought I said everything there was for me to say
How could you know?
I looked into her crying eyes, they were telling me so
Now I don't want to be your cause for sympathy
Save your breath, I never listen
You think I don't know something's missing
But now I'll wait and see
How it all turns out for me
It's not as painful as they tell you
Some success in every failure
Now I know I can handle the pain
I'll stand here waiting, hope it all happens again
Nothing too exciting, just making the most of it. As fun as its been looking forward to all the best life has to offer once this is a memory. Thanks for emails, texts and comments its good to hear from everyone.
-They keep sending porters [Transporters] up to take me to radiation. They show up with wheelchairs but I walk so they leave them outside my room. Then when its done they say are you OK ... yup so I walk back myself. Got back the other afternoon and there were three wheelchairs outside my room ...
-Nothing to the radiation ... I asked but they don't have SPF 5000.
-They do play some good tunes for me. Stones, Blue Rodeo about 30-45min worth.
-Been busy so far going out for lunch and supper enjoying freedom before lock down tomorrow. Keg supper again last night and a beer with my brother and friend on a nice patio. Didn't realise I was going to have this freedom beforehand.
-Came back last night late and the nurses had done shift change ... one never seen me before and was startled to see someone come in so late.
'Uh can I help you?'
'Yeah just going to check in for the night.'
'Oh are you a patient?'
show wristband 'Yeah I think so' :)
-Doctor told me today my donor is B+ blood also so that won't change .... donate blood if you can it helps ... esp if you're B+ ;)
-I asked the nurse if it would help if I gave my new donor cells a little pep talk before to play nice with mine and we'll all get along. I can be pretty fun ... I promise we'll have some good times ... so good they'll never get published on here!
-Never been a big Blue Rodeo fan but started to listen to them a little ... got a kick listening to this song yesterday afternoon on the tanning bed ... thought I'd post the lyrics.
Sometimes you lose your head
Think of all the stupid things you've said
Pouring out of your mouth
Like rain through a broken windowpane
Nobody made you do it
There's a hoop and you jump through it
You made this mess all by yourself
What did you say?
I thought I said everything there was for me to say
How could you know?
I looked into her eyes, I thought they were telling me so
Now I don't want to be your cause for sympathy
I took my chances, eyes wide open
Stayed too long and the spell was broken
Nobody wants to see
The mess you become so easily
Crawling around and singing your sad songs
Late into the night
Must be the words you're choosing
The unconvincing smile you're using
Try and try again, you can't get it right
What did you do?
I poured my heart out til my words filled the room
How did it go?
She smiled and took my hand, said it's all just a little too soon.
Now I don't want to be your cause for sympathy
Save your tears, I never earned them
Lessons are there, but I never learn them at all
Every night the same old game
Fumbling around for some stranger's name
Or going out of your mind
Waiting for the phone to finally ring
I know life can be so messy
But you can't spend all your time confessing
Try saving something for yourself
What did you say?
I thought I said everything there was for me to say
How could you know?
I looked into her crying eyes, they were telling me so
Now I don't want to be your cause for sympathy
Save your breath, I never listen
You think I don't know something's missing
But now I'll wait and see
How it all turns out for me
It's not as painful as they tell you
Some success in every failure
Now I know I can handle the pain
I'll stand here waiting, hope it all happens again
Nothing too exciting, just making the most of it. As fun as its been looking forward to all the best life has to offer once this is a memory. Thanks for emails, texts and comments its good to hear from everyone.
Tuesday, 20 August 2013
Things that help me
While on my way back to my room from my first of two daily radiation doses over the next three days [they really know how to party around here!] I was thinking I'd write about some things that help me while getting through some of these wonderful procedures and side effects. Going through lumbar punctures, bone marrow biopsies, radiation, chemo can be overwhelming. You certainly need to have a 'tool box' full of coping mechanisms to help you 'keep calm'.
I find while getting these procedures done I like to prepare by setting up a happy place [yes similar to Happy Gilmore] in my mind before hand. Whether this is some golf adventure, paddling around a lake fishing and drinking, keeping calm and chiving on, walking a beach, my football picks ... who knows, whatever I'm into that day. If I get these thoughts and scenarios going through my mind before hand and during the procedure it takes my mind off whats going on and helps from building anxiety. I've yet to have and medication for anxiety so it must be working for me thus far. Nothing but sunny skies and drinks on a shaded patio!
Along with trying to slip away and stay in my 'happy place' controlling my breathing is important. Keeps your heart from racing and again obviously building anxiety, allowing you to stay in your happy place. Not always easy but maintaining steady controlled breathing is something I need to do. I know this applies to many things in life helping you keep your calm and composure in any stressful, anxious or exciting situation. I remember watching golf and announcer was talking about a player trying to win his first tournament and struggling with some putts. He went back to a discussion he had with Tom Watson where Tom said I could never start winning tournaments until I learnt to control my breathing. From the adrenaline of hitting a nice shot and walking up the fairway to the ball on the green it can be daunting when there is so much on the line and you need to calm yourself to have the visualisation and touch to drop a putt with all these people watching you. It takes practice but goes a long way to help getting through a trying situation. Nice controlled breathing control the heart rate.
After some of this I'm left with side effects and I'll still employ the above techniques as well as trying to focus on any discomfort as a positive feeling. Again not easy but I'm telling myself this is shitty for me but I'm going to survive while these leukemia cells are getting terminated. F#$k you leukemia I can take this, you on the other hand are outta here. Someone once suggested little chemo bombs getting dropped on the leukemia cells or I think of going hunting and shooting the little bastards...then I turn on the TV and watch the Ti-Cats, Jays loose or get into some TV series or a movie.
It's not all mental in my opinion and its not easy sometimes to stay motivated to stay active when your space is limited and you aren't feeling at your best and energy levels are low. But moving around and exercising helps me with getting more energy, the nausea doesn't seem as bad and its good for your mind too. I don't know if theres any truth to this or not either but I always like to stretch and move to help the chemicals circulate through my body. I always think if they pump me full of this stuff and I just sit or lay around it could linger or pool in areas where my healthy cells are and make things worse than they need to be. Get up, move, circulate, sweat, drink lots of water and get rid of it.
Anyway I know none of this is revolutionary and maybe I'm delusional but thats what helps me get by. Well that and hearing from all you. I like hearing about other things people are doing to make the most of and enjoy their lives. Its a nice break from this temporary set-up I'm in and helps bring some normalcy living vicariously through things other people are getting into. I know I'm not the first one to go through this or something similar with health problems or tough times and I'm certain any of you would ... and have managed in your own way keeping positive and getting through them with courage and a few laughs along the way but thats my two cents for the day ... two what?
I find while getting these procedures done I like to prepare by setting up a happy place [yes similar to Happy Gilmore] in my mind before hand. Whether this is some golf adventure, paddling around a lake fishing and drinking, keeping calm and chiving on, walking a beach, my football picks ... who knows, whatever I'm into that day. If I get these thoughts and scenarios going through my mind before hand and during the procedure it takes my mind off whats going on and helps from building anxiety. I've yet to have and medication for anxiety so it must be working for me thus far. Nothing but sunny skies and drinks on a shaded patio!
Along with trying to slip away and stay in my 'happy place' controlling my breathing is important. Keeps your heart from racing and again obviously building anxiety, allowing you to stay in your happy place. Not always easy but maintaining steady controlled breathing is something I need to do. I know this applies to many things in life helping you keep your calm and composure in any stressful, anxious or exciting situation. I remember watching golf and announcer was talking about a player trying to win his first tournament and struggling with some putts. He went back to a discussion he had with Tom Watson where Tom said I could never start winning tournaments until I learnt to control my breathing. From the adrenaline of hitting a nice shot and walking up the fairway to the ball on the green it can be daunting when there is so much on the line and you need to calm yourself to have the visualisation and touch to drop a putt with all these people watching you. It takes practice but goes a long way to help getting through a trying situation. Nice controlled breathing control the heart rate.
After some of this I'm left with side effects and I'll still employ the above techniques as well as trying to focus on any discomfort as a positive feeling. Again not easy but I'm telling myself this is shitty for me but I'm going to survive while these leukemia cells are getting terminated. F#$k you leukemia I can take this, you on the other hand are outta here. Someone once suggested little chemo bombs getting dropped on the leukemia cells or I think of going hunting and shooting the little bastards...then I turn on the TV and watch the Ti-Cats, Jays loose or get into some TV series or a movie.
It's not all mental in my opinion and its not easy sometimes to stay motivated to stay active when your space is limited and you aren't feeling at your best and energy levels are low. But moving around and exercising helps me with getting more energy, the nausea doesn't seem as bad and its good for your mind too. I don't know if theres any truth to this or not either but I always like to stretch and move to help the chemicals circulate through my body. I always think if they pump me full of this stuff and I just sit or lay around it could linger or pool in areas where my healthy cells are and make things worse than they need to be. Get up, move, circulate, sweat, drink lots of water and get rid of it.
Anyway I know none of this is revolutionary and maybe I'm delusional but thats what helps me get by. Well that and hearing from all you. I like hearing about other things people are doing to make the most of and enjoy their lives. Its a nice break from this temporary set-up I'm in and helps bring some normalcy living vicariously through things other people are getting into. I know I'm not the first one to go through this or something similar with health problems or tough times and I'm certain any of you would ... and have managed in your own way keeping positive and getting through them with courage and a few laughs along the way but thats my two cents for the day ... two what?
Monday, 19 August 2013
Hospital Food ... Unreal!
Well not really the hospital food isn't as good as I thought I remembered it in Jan ... I must have been messed up because it hasn't been up to my usual high standards this go around. Ah well its only a month or there abouts. On the bright side I finished up the last 1.2L of chemo and meds today and the doctor said I could go out for an hour so I said good bye to Irene and went here for supper! http://www.caplanskys.com/menu I think its been on 'diners drive ins and dives' or 'you gotta eat here'. Its about a 2km walk from here each way which feels like a decent trek in my current state but well worth it. I walked through Baldwin villiage which is a busy little area with a bunch of outdoor patios and made my way for a kick ass smoked meat sandwich and fries. I would have taken and attached a picture but it didn't stand a chance. Nice bit of exercise, quality meal and some people watching to raise my spirits! Should sleep well tonight....
It's not what it looks like ...
Seems I remember a few times in my past this line has been used by me or more often my friends. But those are some of stories best shared over a drink. My latest 'it's not what it looks like' moment was last night ....
Ah the joy of having people check up on you every couple hours through the night. Had my first semi awkward moment last night. Seems I fell asleep watching a showtime tv series only to wake up to see my nurse do an abrupt about face and hurry out the door. After I shook the cob webs out I realized there was a pretty graphic sex scene on at that moment. Didn't want her to get the wrong idea so I made a point to ask when she returned in the morning if she had ever watched that series as I've been going through the episodes lately but she had no idea. Oh well, was good for a laugh.
Ah the joy of having people check up on you every couple hours through the night. Had my first semi awkward moment last night. Seems I fell asleep watching a showtime tv series only to wake up to see my nurse do an abrupt about face and hurry out the door. After I shook the cob webs out I realized there was a pretty graphic sex scene on at that moment. Didn't want her to get the wrong idea so I made a point to ask when she returned in the morning if she had ever watched that series as I've been going through the episodes lately but she had no idea. Oh well, was good for a laugh.
Feedback
Thanks for all the positive feedback. I'm glad people seem to be enjoying this glimpse into this process and some of my insights so far. I'll try not to neglect it now I've started but no promises.
Got 1.2L of chemo yesterday and 150ml of hydration an hour. Seems one of the side effects I'm realizing is retaining water. Plus about 4.5L in 20hours. But after some advice from a friend I got up and did some extra walking and put my feet up [which were swelling] ... that helped last night and now some diuretic this morning and see ya later 3.5L in 1.5 hours ... and I thought breaking the seal while I was drinking was bad. Too much info?
Got 1.2L of chemo yesterday and 150ml of hydration an hour. Seems one of the side effects I'm realizing is retaining water. Plus about 4.5L in 20hours. But after some advice from a friend I got up and did some extra walking and put my feet up [which were swelling] ... that helped last night and now some diuretic this morning and see ya later 3.5L in 1.5 hours ... and I thought breaking the seal while I was drinking was bad. Too much info?
Sunday, 18 August 2013
Me, myself and Irene
Hooked back up with one of my favourite dance partners Irene this morning for some hydration before chemo .... Now I know what the wig shop downstairs is for.
Saturday, 17 August 2013
Diagnosis
I'm not sure when it all started ... maybe November. That time of year the days are getting short, weather is cool. I was getting pretty tired after a day of work. Exhausted tired and I'd be sleeping for a couple hours after work maybe a quick bite and passing out for the night shortly after. I thought it was probably the time of year, maybe I needed a multi vitamin or something or I was down because the relationship I was in wasn't going well and coming to an end. December came and things weren't getting any better. I'd get a headache here or there for no reason a few nights I'd sweat a lot especially if I was having a dream. Wake up soaked and have to change the sheet or sleep on top of a blanket. At work I was having trouble keeping up. It would take more effort than it should have just even walking around and climbing ladders etc. Usually in the afternoon for some reason after coffee break I'd get a thrushing sensation in my ears that would throw my balance off a bit. Being 31 and relatively healthy I thought maybe it was a cold or something ... suck it up princess. Closing in on Christmas I was having some tight crushing pain in my chest and my appetite wasn't there. Looking back I probably should have went to the doctors around now. Naw just keep pushing ... then one night late I was walking to the couch ... sober, got dizzy and colapsed. What the hell was that. Picked myself up 'well that was embarassing better keep that quiet.'. Then a couple days later I got up to go to the washroom in the middle of the night and while I was going I was getting dizzy and it was tiring me out ... hardest pee of my life. Washed my hands and on the way out of the washroom I fell again but I cracked my head on the wall on the way down. F@#k I was angry 'what's going on'. Got up and laid down in bed but when I felt my head where it was sore I could tell I was bleeding. Looked in the mirror and my cheek bone was swollen and bruising right away and had a nice goose egg with a gash on my forehead. I did what most guys would do ... clean up, cover the gash, shot of whiskey and back to bed. The next morning I woke up and looked like I was on the wrong side of a lopsided fight. I didn't want to go out but it was snowing pretty good I had to shovel the driveway. Sunglasses and toque did a good job covering it up but I was hoping I wouldn't bump into my neighbours. Shovelling didn't go well. I was exhausted and my chest hurt, I flat out couldn't do the heavy stuff when I got to the bottom of the driveway. I had no strength and ended up pulling a muscle or something in my ribs ... this is going from bad to worse. Ok time to think about a visit to the doctor ... after the new year. I went to family Christmas and a few people my Aunt in particular thought I looked pale but my story about how I fell shovelling seemed to go over. When I made it to the doctors I was pale my heart was racing and I had no energy. He took one look, checked my pulse, told me I looked anemic and was I bleeding or bruising [only a little from the head], wrote me a note to take and told me to go to emergency. No waiting for this guy ... not that day. Right in on the ECG and into a bed. Blood test and CT and I'm concerned. Looks like I'm going to need some back up at this point so I called my Dad and told him I'm sick in the hospital. I don't remember too much about it but he came right down and I think in the mean time the doctor had told me pretty causually that I had leukemia and would need to get transfered to princess margaret for all the details in the morning but they wanted me to stay in emerg or in the hall on a bed because there was no rooms. Forget that!
'what are you going to do for me tonight'
'nothing'
'can I go home?'
'we can't force you to stay but would reccommend you do'
'Thanks for the hospitality ... see ya later!'
I went to my house with my Dad had a couple beer and watched a college bowl game. The next morning I went down to Princess Margret with few details not knowing what to expect but I had that feeling so I packed a bag or two just in case. Smart moves it turns out they had a room waiting for me. I remember going for some test a week or so later after being admitted and the porter took me there but left me with my file. I cracked it open to see what good news I could find in there nothing memorable except a short email from my doctor at Princess Margaret to the doctor in the Ajax emerg. saying I was a fool for leaving the hospital that night .... haha I still get a laugh thinking about that.
After a full first day running around, getting poked and tested I found myself in a small room with my Dad waiting to talk to the doctor. He was pretty matter of fact explaining the type of leukemia I had and how its pretty agressive and the treatment protocol was a tough, long process but 'you're young, you're healthy, you'll be fine. you'll be fine' I think I actually chuckled at this point thinking hes joking right ... I'm going to be fine ... I'm healthy. A couple min ago it was you have leukemia now its you're going to be fine?? Come on you gotta be bullshitting me. My stomach felt like it did a back flip and was trying to work its way to daylight but I think I took it pretty good. I didn't waste too much time feeling sorry for myself. I mean you can't help but be pissed off, sad you name it ... thinking man I got a good job, house, great family and group of friends, handsome as you'd like ... hah its all where I want it and now this kicks me in the balls. Didn't take long before I realigned my thinking to fighting it and the reality of the battle I was getting into. 'don't have a room full of people over crying and staring at you like you're on your death bed, stay positive and you're young you'll be fine.' the doc said ... Done. I'll be positive and do everything I can to be the best patient they've had and I'll be a good story when this is all behind me. This is your new reality accept it and lets get on with the getting better.
It wasn't until I started thinking about telling other people I got choked up. Still thats the worst part is telling other people. Well I'm better with it now but at the start. I think part of it was actually hearing yourself say I have leukemia and part of it is feeling weak and like you're letting people down because now they have to watch you go through this. I'm still delusional sometimes and am not convinced there is anything wrong ... the doctors disagree. All in all things are working out. The doctor said that day with out treatment I'd be dead within a couple months tops and here we are 8 months later and I'm on a path to putting leukemia where it belongs ... no where!
'what are you going to do for me tonight'
'nothing'
'can I go home?'
'we can't force you to stay but would reccommend you do'
'Thanks for the hospitality ... see ya later!'
I went to my house with my Dad had a couple beer and watched a college bowl game. The next morning I went down to Princess Margret with few details not knowing what to expect but I had that feeling so I packed a bag or two just in case. Smart moves it turns out they had a room waiting for me. I remember going for some test a week or so later after being admitted and the porter took me there but left me with my file. I cracked it open to see what good news I could find in there nothing memorable except a short email from my doctor at Princess Margaret to the doctor in the Ajax emerg. saying I was a fool for leaving the hospital that night .... haha I still get a laugh thinking about that.
After a full first day running around, getting poked and tested I found myself in a small room with my Dad waiting to talk to the doctor. He was pretty matter of fact explaining the type of leukemia I had and how its pretty agressive and the treatment protocol was a tough, long process but 'you're young, you're healthy, you'll be fine. you'll be fine' I think I actually chuckled at this point thinking hes joking right ... I'm going to be fine ... I'm healthy. A couple min ago it was you have leukemia now its you're going to be fine?? Come on you gotta be bullshitting me. My stomach felt like it did a back flip and was trying to work its way to daylight but I think I took it pretty good. I didn't waste too much time feeling sorry for myself. I mean you can't help but be pissed off, sad you name it ... thinking man I got a good job, house, great family and group of friends, handsome as you'd like ... hah its all where I want it and now this kicks me in the balls. Didn't take long before I realigned my thinking to fighting it and the reality of the battle I was getting into. 'don't have a room full of people over crying and staring at you like you're on your death bed, stay positive and you're young you'll be fine.' the doc said ... Done. I'll be positive and do everything I can to be the best patient they've had and I'll be a good story when this is all behind me. This is your new reality accept it and lets get on with the getting better.
It wasn't until I started thinking about telling other people I got choked up. Still thats the worst part is telling other people. Well I'm better with it now but at the start. I think part of it was actually hearing yourself say I have leukemia and part of it is feeling weak and like you're letting people down because now they have to watch you go through this. I'm still delusional sometimes and am not convinced there is anything wrong ... the doctors disagree. All in all things are working out. The doctor said that day with out treatment I'd be dead within a couple months tops and here we are 8 months later and I'm on a path to putting leukemia where it belongs ... no where!
New Digs
Checked into my room with a view ... Some people pay big bucks for accommodations like this downtown. Lucky me! There's even a drinking fountain in the washroom ... Kind of odd how low to the ground it is...
Friday, 16 August 2013
'The fear of suffering is worse than the suffering itself'
Yes, that is from the popular Paulo Coehlo book The Alchemist. I just re read it the other day and there were some quotes that I related to I thought I'd share. As time goes by and a life threatening if not altering procedure is staring you in the face it can be a challenge to keep cool. Staying busy helps no doubt. Understanding what's coming and the time waiting can weigh on you. That's when I've been trying to remind myself of this 'the fear of suffering is worse than the suffering itself'. I'm sure if you were to tell me this when I'm suffering I'd tell you to take off or something along those lines. But its true because whatever lies ahead is there and stressing and being fearful of it only makes it start sooner and last longer. Energy is better spent planning and preparing for it if you're going to put any thought towards it at all.
'Its the possibility of having a dream come true that makes life interesting and worthwhile.'. Well that and golf! I guess thats what makes the bucket list appealing. I'll go into this armed with things I look forward to experience in the future. I've done a lot over the last few months but I figure to keep you going you never actually complete the bucket list. Similar to the honey do list I'd imagine. See ladies we need to keep things on there to keep us going ;). Guys you owe me a beer if that got you out of some chores.
'When you really want something all the universe conspires to help you to achieve it.'. Well I sure hope so because I really want to be healthy and back to the old shenanigans so let the conspiration begin. Haha I'm relatively certain that's not a word ... Sounds dirty like perspiration. I'm a firm believer that you control your destiny. I realise this requires me to put in a lot of hard work and that simply sitting around wishing I'd get healthy isn't going to be enough. All the positive energy my friends and family are passing on to me gives me the strength to keep going. Having said that ... I can be lazy at times (I can tell everyone is shocked at this point) please give me a kick in the ass from time to time so I can get my 6 pack back. Haha. Glad I figured out how to at least hide the comment section at this point.
Friends and family have been amazing support through this. I'm grateful for the time we've spent together and things we've done leading up to this. I'm regretful I didn't spend more time with some people. I'm still working on the whole live life with no regrets thing. I'll get it one day, maybe the same day I figure out procrastination. That and self actualising myself to the point where I'm not insecure if I don't have eye brows ... They're not serving much of a purpose anyway. I only wish I could have swam this summer I may have been able to set a Club Hamilton lap record without their added resistance.
'Its the possibility of having a dream come true that makes life interesting and worthwhile.'. Well that and golf! I guess thats what makes the bucket list appealing. I'll go into this armed with things I look forward to experience in the future. I've done a lot over the last few months but I figure to keep you going you never actually complete the bucket list. Similar to the honey do list I'd imagine. See ladies we need to keep things on there to keep us going ;). Guys you owe me a beer if that got you out of some chores.
'When you really want something all the universe conspires to help you to achieve it.'. Well I sure hope so because I really want to be healthy and back to the old shenanigans so let the conspiration begin. Haha I'm relatively certain that's not a word ... Sounds dirty like perspiration. I'm a firm believer that you control your destiny. I realise this requires me to put in a lot of hard work and that simply sitting around wishing I'd get healthy isn't going to be enough. All the positive energy my friends and family are passing on to me gives me the strength to keep going. Having said that ... I can be lazy at times (I can tell everyone is shocked at this point) please give me a kick in the ass from time to time so I can get my 6 pack back. Haha. Glad I figured out how to at least hide the comment section at this point.
Friends and family have been amazing support through this. I'm grateful for the time we've spent together and things we've done leading up to this. I'm regretful I didn't spend more time with some people. I'm still working on the whole live life with no regrets thing. I'll get it one day, maybe the same day I figure out procrastination. That and self actualising myself to the point where I'm not insecure if I don't have eye brows ... They're not serving much of a purpose anyway. I only wish I could have swam this summer I may have been able to set a Club Hamilton lap record without their added resistance.
Wednesday, 14 August 2013
Blogging ... who knew.
Unfortunately while the title suggests this is a blog written while I'm drinking I'm relatively certain that won't be the case. If that's why you came here you best move on. I do however encourage you to drink while you read this ... Then it may actually seem funny and tolerable. I created this blog for selfish reasons and its more for me than anyone else. Selfish as I am I'll share if you're interested. Well as much as I want anyway ;) thats where I came up with the name because while hopefully being candid there are some details or personal thoughts that won't make it on here and you'll probably have to get it outta me while I'm drinking and you're buying ... Or I'm buying ... As long as we're drinking.
The selfish reasons I'm going to do this are I'm going in for a bone marrow transplant in a couple days and I'm certain writing some thoughts, feelings, complaints anything really will help me reflect and keep things in perspective and I'm sure I'll be bored couped up in the hospital. I've read the blogs of other people who have successfully been through what I am about to go through and it seems to be therapeutic. Second while I could write privately in a journal (what fun is that) it will prevent me from having to say the same thing over again to different people. Not that I don't appreciate peoples genuine concern for me but you get the point. Not so selfishly it can be a place people get updates since I don't subscribe to Facebook ... But that's another story. Last and maybe a secondary motive is maybe someone else going through similar experience or some trying time in life will be able to take something from this. I say secondary because I know my focus needs to be on me for the next while as I get through this uphill portion of life before I can spend too much energy giving back to others.
More than likely this will turn into a rambling mess of poor grammer and spelling (has that already started?) But hey its the internet anything goes and I'm not getting graded on this. I'll have to look into disabling the comment section. This is my blog on the internet and anything goes so you may want to stop reading now Mom...and the rest of the family... Maybe this was a bad idea ... Oh well can't get any worse than my brother's Facebook updates can it?
Historically I've been terrible staying in contact with people so maybe this will help take a step in the right direction ... Although depending what I write it could go the other way too I suppose. This is getting fun already. Screw it lets have a laugh. I was going to title it wet dreams ... Refering to the night sweats I was having when I was first diagnosed (obviously) but I figured it was already taken and it may attract the wrong crowd over to read this. The diagnosis was ALL Philadelphia positive which maybe I'll write about if I feel like it. One thing I won't write too much about or be liable for is anything about medical details because I'm not a doctor or nurse nor do I have any desire to. OK I've wrote enough for now ... You get the idea.
The selfish reasons I'm going to do this are I'm going in for a bone marrow transplant in a couple days and I'm certain writing some thoughts, feelings, complaints anything really will help me reflect and keep things in perspective and I'm sure I'll be bored couped up in the hospital. I've read the blogs of other people who have successfully been through what I am about to go through and it seems to be therapeutic. Second while I could write privately in a journal (what fun is that) it will prevent me from having to say the same thing over again to different people. Not that I don't appreciate peoples genuine concern for me but you get the point. Not so selfishly it can be a place people get updates since I don't subscribe to Facebook ... But that's another story. Last and maybe a secondary motive is maybe someone else going through similar experience or some trying time in life will be able to take something from this. I say secondary because I know my focus needs to be on me for the next while as I get through this uphill portion of life before I can spend too much energy giving back to others.
More than likely this will turn into a rambling mess of poor grammer and spelling (has that already started?) But hey its the internet anything goes and I'm not getting graded on this. I'll have to look into disabling the comment section. This is my blog on the internet and anything goes so you may want to stop reading now Mom...and the rest of the family... Maybe this was a bad idea ... Oh well can't get any worse than my brother's Facebook updates can it?
Historically I've been terrible staying in contact with people so maybe this will help take a step in the right direction ... Although depending what I write it could go the other way too I suppose. This is getting fun already. Screw it lets have a laugh. I was going to title it wet dreams ... Refering to the night sweats I was having when I was first diagnosed (obviously) but I figured it was already taken and it may attract the wrong crowd over to read this. The diagnosis was ALL Philadelphia positive which maybe I'll write about if I feel like it. One thing I won't write too much about or be liable for is anything about medical details because I'm not a doctor or nurse nor do I have any desire to. OK I've wrote enough for now ... You get the idea.
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