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.

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!

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.

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 :)

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.

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 :)

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.