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 :)