Got AML? http://aml.ohhh.no I do posterous.com Wed, 31 Mar 2010 20:17:00 -0700 42 http://aml.ohhh.no/42-197 http://aml.ohhh.no/42-197
Prologue:

Ive been mad, so damn mad the only laughs I had was while puking my guts out. Well, it sounded more like the aftermath of a great laugh, you know, when you hold your stomach, sighin for air, trying not to roll over and die. It was a helluva laugh, good times. 

The last week, well, almost two weeks now Ive had mostly good days, and more importantly, some random good nights. Its amazing what 2-3 hours of solid sleep can do to a otherwise crappy state. The docs had high hopes that my brother's bonemarrow would also affect Mr B. It might have, its still early days, but I wont likely get rid of him, my bro also has it, but thankfully alot less(lets call it B Jr.). But the good ol' days(1 year +) where I had to drug myself down to even be able to roll over and *crawl* my way down to the kitchen has not returned(yet!). I knock on my wooden stairs every morning I am able to walk down with my own feets.(happy days!)

With the ability to take daily walks, play with my niece & nephew, and even make short visits to friends, it has left me pondering, when should this site RIP? When do I Press Play On Tape on my old dusty cassette with the unfamiliar title; "LIFE"? As some of you have noticed, I have taken down my µblog(fun.ohhh.no), visiting/using it brought back too many rough memories. Although I love(d) the conversations identi.ca / status.net omb brought(I tip my hat at you, you know who you are), it wasnt enough to get rid of that annoying bad taste. And in many ways, I have the same with this site, and most of the sites this stream trickle through.. But I dont see myself pulling the plug on all, even tho that thought has struck my mind.

Back to this site, I could of course change it up a bit, and make it more in line with the search for *my* life's HOWTO. Im def open for ideas, I have other projects & domains I would like to persue, I'll make a update here if I feel its worth sharing. Sticking my head out like Ive done here is not really me, atleast not who I thought I was. I have no regrets over opening up my life to you all like this, but I was very clear with myself that at some point, you will have to insert a chapter.

Epilogue: 

Every decision we make, be it good or bad, is something we have to live with, and one thing I can tell you, Im not about to waste so much time on whatever comes along that dont feel right. Ive taken decisions I regret, but Ive been able to live with most of them. I have a few outstanding "Im so sorry, it haunts me weeky how poor my judgement was", but the more time passes, the harder it gets to do.I will get to it, Im soon 6 months into my new life, I will try to not add more bullet points to that list.

"Live Strong" #muchlove

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Fri, 19 Mar 2010 11:20:44 -0700 Friday fun http://aml.ohhh.no/friday-fun-149 http://aml.ohhh.no/friday-fun-149
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First dismantle my A1 and fix the powerplug, next up my good ol C64. Poor thing got a few sticky keys. Then? Fire up Bruce Lee and make an evening out of it. Green men, be aware! I found the action replay & the final cartridge again, amazing what you find when you start your spring cleaning.. Whats your fav C64 game?

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Fri, 05 Mar 2010 04:27:49 -0800 Life aint so bad http://aml.ohhh.no/life-aint-so-bad http://aml.ohhh.no/life-aint-so-bad
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When its sunny, if only the temp could be +15c instead of -9c

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Fri, 05 Feb 2010 12:46:01 -0800 Mugshot 3 month bday http://aml.ohhh.no/mugshot-3-month-bday http://aml.ohhh.no/mugshot-3-month-bday
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Now, with extremely potent flash! Slowly things are starting to grow back out.

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Tue, 12 Jan 2010 05:47:52 -0800 Guess who's back? http://aml.ohhh.no/guess-whos-back-11 http://aml.ohhh.no/guess-whos-back-11 Me! Todays check up showed great progress. In 4 days my platelets have doubled, blood % up by 4 and Ive gained 2kg. Not bad huh? Will continue with current dosage and pill mix a week, then add 1 by 1 till we confirm which one was the cause. Our money is on Tramadol, but bets are open, other candidates are Valtrex and Zopyclone(sp?). Rock on bitches!

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Sun, 10 Jan 2010 03:05:33 -0800 A day off, sunday bloody sunday http://aml.ohhh.no/a-day-off-sunday-bloody-sunday http://aml.ohhh.no/a-day-off-sunday-bloody-sunday
For those following my microblog rants(hint; links on the right side), this is "old" news, but many of you still struggle on finding the "internet" button(read browser), so as the warmth of the stove spreads its calming wings in my frosty house, another brief update is coming your way.

We havent found out which of the pills interaction caused my 3 week hail to the porcelain god, the culprit is in the cocktail, coming week we'll try & nail it down. Just shy of 30 hours after the last molotov, I had my first dinner this year, and it stuck. The day after(last night) I celebrated my lil brothers birthday, and competed hard with my nephew on who could eat the most candy & my sister in-laws heavenly buns(pastries you pervs!). I lost by a margin of a few chocolate pieces, but seeing as we both need all the intake we can get, I'll live with that loss, for now. 

I havent been intimate with porcelain since then, kept a safe distance and only let it rain(for lack of better words) in it. I am so relieved, I shed many a happy tear last night. Ive been at the hospital every day to get IV fluids this week, today I decided to take a day off and let fluids in the old fashion way. 

A old friend of mine sent me a message that I read today, and ended it with the question; "Are you not scared?". Dear, sweet Kristin, Ive been scared shitless so many times, not only over this, but from most of my ups & downs the last 6 months. Lost sleep over it, cried over it, cursed, spit, mustered so much rage that I think I could have knocked down a wild pack of bulls, just by looking at them. This insane rage, Ive managed to fine tune & utilize over time, I'll be the first to admit I let it burst out on the wrong people. Ive had very little practice with deadly deceases, I am sorry if any of you felt hurt, that was not my intentions, I was hurt too, in more ways than one, could we leave it at that? 
Anyways, this rage, or grumpiness as I like to call it, is whats keep me going, its the only fuel I can reliably run on. These new touchy feel-good injection systems can be fun to take for a few rounds around the track with. But for the every day hark & spit, grumpy is whats gets me where I need to be. 

So while I enjoy a virgin(buuhh!!) bloody mary, I'll let you happy go lucky ricers(pun tended) roll around in your bubbles. Your bubble will pop at some point, when that happens, feel free to drop me a visit. 

GUS (Grumpies Are Us) is an open club, open 24/7.

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Fri, 08 Jan 2010 10:48:38 -0800 You're it! Hell no, you're it! http://aml.ohhh.no/youre-it-hell-no-youre-it http://aml.ohhh.no/youre-it-hell-no-youre-it
Just a brief update, Ive had serious trouble getting any food to stick since a week before xmas. They have thought this was caused by GVHD, but after todays gastroscopy, thats no longer it. No signs of it. Which left the docs scratching heads, going over the bonemarrow sample they took a few days ago, no signs of bad boys there. What could cause my body to reject food, my platelets to sky drop(170 -> 44 today) & dryness in mouth & throat?
They are not sure, so this weekend we are playing the needle in the haystack, pills edition. Drop any & all but the Sandimmun, and see how it floats. If the platelets continue to drop, we are in serious(if this wasnt serious enough as-is) trouble people.

Ive been going to the hospital for IV fluids every day this week, and will also go this weekend, its not only food my body cant take. My liver sent a S-O-S on tuesday, IV fluids will hopefully keep it happily going till I can reclaim my intakes & make em stick.

There is alot of "we hope" "not sure" "they dont know" these days, it doesnt help on my overall mood, but I try to be the annoyingly grumpy fawktard that I usually am. You got a problem with that? Go fuck yourself!

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Mon, 28 Dec 2009 09:35:23 -0800 So lonely http://aml.ohhh.no/so-lonely http://aml.ohhh.no/so-lonely
Ive become more and more depressed the last 2-3 weeks, its a natural feeling they say, and I get that. It still a very odd place to be in, I should be cheering and smiling, but all I feel like doing is sleeping & crying. The last 3 days Ive slept the better part of 2 days, not a natural sleep mind you, I do take sleeping pills. I just want time to pass, let this all be over with. It doesnt help one bit that I struggle to eat, drink, walk, talk, be social or feel awake, and whatever I do(or try to do), I seem to end up in the same downward spiral I tried to get out of. 
I have talked to family & docs about perhaps some anti-depressives might help, Im reluctant tho, I feel its just pushing what needs to be dealt with in front of me. Eventually it will pass, I bloody well hope so atleast, cause this all is taking a serious tool on every part of my well being. I have pretty much decided a shrink is out of the question(ref prev posts), there is only so much talk to be done, and Ive talked this over and over and over in my own head. So much so I think talking about it more will only make it worse. I seek distance in watching tv series & the occasional movie, and it does help to get a little time-out from real life, and it kills precious time. Time which I have too much of, ironic aint it? Not that many months ago I didnt know if I had any time left..

I have many things I could do, without wearing myself out physically, but I tend to end up with doing nothing, especially the last 2-3 weeks. And I find that to be incredibly frustrating in addition to being tiresome. The irony doesnt go by unnoticed there either, no matter what direction I choose, I feel Im knocking my head against the same wall. Just the thought of this being month 2, and 6-10 more of the same is enough to knock the wind out of me. This is such a lonely state to be in, having family or friends around is good, for short periodes, but they will never get what its like. The few in my life that get it have enough with coping with their own recovery, atleast thats how I feel, I dont want to force myself on them. I might be way off feeling that way, for all I know, they might be feeling the same.

My older sis, brother in-law & 3 nieces came last night, they are staying for a week at my old mans house. Its good to see them again, and I wish I had more surplus so I could enjoy their company more than I do, but alas. Lil sis is going back to Sweden tomorrow, she followed me home after tonights family dinner. I barely managed to eat before I started feeling sick & dizzy again. So I find myself flat out in the sofa, staring at the darkness that surrounds us during this time of the year. It does match whats going on inside me, for some obscure reason, I do find a little comfort in that.

On a more positive note, a person very close to me is donating bonemarrow to a lucky soul next week, without it the lucky soul would have 0 chance of survival, with the new bonemarrow that increases with 60%! I wont say a name, this process is anonymous, but I will say that Im very proud. I wish more people would step up & become donors, at the very least give blood. Its close to painless, and makes a world of difference. Please consider that to be your new years resolution, give me a reason to smile, make me proud. 

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Wed, 23 Dec 2009 10:29:55 -0800 Dude, move over http://aml.ohhh.no/dude-move-over http://aml.ohhh.no/dude-move-over
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There's plenty of room in here!

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Mon, 21 Dec 2009 06:11:48 -0800 killing in the name http://aml.ohhh.no/killing-in-the-name-3 http://aml.ohhh.no/killing-in-the-name-3
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Kinda hard to jump, play and take a picture at the same time. But there ya go macno, ho ho fawking ho! :-)

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Sun, 20 Dec 2009 09:22:36 -0800 Wax on, Wax off http://aml.ohhh.no/wax-on-wax-off-1 http://aml.ohhh.no/wax-on-wax-off-1
Im tired, so tired I can barely stay awake. It feels like *everything* is catching up with me, I have ran out of places to hide. In many ways Im glad, its not like I have the strength to keep up with all this bullshit anyway. My closest family has got the flu, so I dont see them much. Friends are busy with preparing for xmas, so dont see much of them either. What I do see, and too much of, is my new telly. It's a beauty, so Im not complaining, and it beats doing a show-down with a wall.

With the absence of family & friends, you'd think my days are cold & lonely? Yes, they are, but more so cause it *is* cold outside. So cold, I have to push the stove to its limits. Add to that a body thats gone through a brazillian aaaall over(excluding eye brows), and 0 body fat. There is *very* little isolation going on here. I have several layers of clothes on me, and even with +25C in the room Im cold. Can you imagine how bad it is to go outside when there is -15C? I start to shiver just opening the front door for 5 sec. Yeah yeah, I hear ya, why the fuck Im still living in this country is beyond me too, especially during the winter. There is only 1 good thing about the winter, you can drive like a mad man with a snowmobile, that is all. Skiing is for morons(especially the wackos doing down-hill), so needless to say, there are a lot of morons in this hemisphere. But who am I to brand them crazy fools?! Takes one to know one, I just load my bags of craziness elsewhere, nuff said.

Its 4 days left till the xmas bonanza begins, mass amounts of kiss kiss hug hug, food, candy & belly aches. Xmas is for the kids, the rest of us know this. Its one of the many fawked up christian 'traditions' thats been commercialized to hell and back(not really returned from hell yet imo). But, as long as its for the kids, all is good? Having my doubts, but I'll zip it for the sake of the family. Personally I'd like to scratch *any* and *all* rubbish thats got a base in religion from the calendar, but I couldnt live with trying to explain my niece how that would be. "what? No santa? No gifts? No Jesus? No angels? No snow either?"  Allright, I'll zip it up now, no more mentioning of all the wrongs that religion have brought upon innocent lives of non believers, or those that dont share their views. 

So happy holidays, if you believe in fairytales or not, happy fawking holidays. 

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Thu, 10 Dec 2009 09:38:52 -0800 Ella's 4th bday - Now with the right images http://aml.ohhh.no/ellas-4th-bday-now-with-the-right-images http://aml.ohhh.no/ellas-4th-bday-now-with-the-right-images
One of my pride and joys(nieces) celebrated her 4th bday yesterday, and my nephew got hooked on licorice. It was a very nice evening, and Im sure a few noticed, I shed many a brave tear. Tried to swallow it, but just couldnt, the joy of being there was(and still is) enough to make me cry. Ive never had a issue with showing feelings in the past, now I just dont give a rats arse any more. Especially since most of the tears got a sweet sweet taste of happiness to them.

Putting up a mugshot of how I feel, more so than how I look. Just wait till the early teen blond mustache grows a bit more, that will bring another level of hotness to the sexy biatch that I am.

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See the full gallery on Posterous

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Sun, 06 Dec 2009 09:02:06 -0800 The questinable truth, where disillusion meets a normal sunday http://aml.ohhh.no/the-questinable-truth-where-disillusion-meets http://aml.ohhh.no/the-questinable-truth-where-disillusion-meets
Im home, Im alive, I try to make things normal again. As normal as they can get, seeing I have to visit St. Olav twice a week, then there is the big dreaded follow-ups every third month at Haukeland. That sounds all feasible, and it is, but add to that a constant reminder of how amazingly lucky Ive been throughout this whole ordeal. I have to remind myself, you are alive, you are alive, you are alive you lucky son of a bitch, and chances are, you are gonna live to see another year. Another year, Im not sure how I can let you in on how far ahead that is for me, and how hard it is for me to digest the mere thought of it. 

If you think its been sad & gory ride so far, braze yourself, you are about to witness the possibilities of a mental break down, or a re-arranging of the top floor so thorough, you might not recognize the man behind the words. I told you in one of the first sunday posts how little time I had between the diagnose & the start of the treatment, but you might not grasp how much I had to lock out in that 24 hour time frame. Cause thats what I had, *boom* You got AML *ffwd 24 hours* you find yourself attached to the porcelain god, throwing up like you've never done before. Alot had to go, for me to even find strength to get through the war, that meant(I was out of options, this had to be my way) disconnect from most of the things I value. Life, family, friends, good eats, drinks, anything that made me happy. Anything *not* related to me dealing with the hour I was in was a needed casualty. I could not see my family or friends, or read their very heart warming messages without feeling like I would loose the little control I had. 

Its been 6 months, every time I had a good period, I saved up any surplus for the rainy day, cause it would come. And I wouldnt put much money on this being over just yet, so when should I start to enjoy it, let my shoulders down?! I know I should enjoy the extra time I've got, and Im really trying, but bare in mind, for me to enjoy life, that means including the people I love. Boy could that be a can of worms, 6 months of locking them out, all for the greater good, and now I need to open the lid ever so lightly, just let it breath for a small moment at a time. Trust me on this, if I open it all up, I'll admit myself to a nutter ward come evening. Talking to someone helps, but seeing a specialist/shrink on this might not be what Im after, or need. Granted he/she might be top of their class, with years of experience in the field, but do they *really* know how it is going through it? Im going with no on that one, unless they actually have, but finding a shrink thats actually had the joy ride, wow, I think my chances are greater in the lottery.
So for now, Im sticking to my approach, I do believe I have enough sanity to spot if this is going belly up. If you spot it before me, hey, I welcome comments, as always. We might not agree, heh, chances are that train left the station many a post ago, no?

Ive taken a few baby steps, first I went from taking an hour at a time, to a day. Now Im actually gonna celebrate xmas & new years with my family and friends. Well, wont be a big party for atleast another 3 months. I need to avoid any big crowd, there might be a tiny little bug that my body just cant handle. I need to use a mask every time I visit places where there are more than oh lets say 10 people. Unless its people I *know* are healthy(and had their shots), then I can actually look a little less silly. Trust me when I say this, I could *not* have picked a worse time to get leukemia. People avoid you when you wear a mask, they look away, they get seriously uncomfortable if they get stuck in an elevator with you. "He got the swine flu, omg!!!" 
Ive stopped telling people its cancer, why should I excuse myself? Why?! Ive pondered on painting fawked up statements on the mask, just for kicks, I will do it at some point. Its getting tiresome...

So on this chilly, but very nice sunday evening, what am I doing? Im catching up on all the tv Ive missed out on the last month and a half. Therapeutic? Hardly, but its what I would do if my life was normal. I am a sofa buff, and I do love me a good tv series or movie. That to me is what sundays are for, relax, recoup & slowly get yourself ready for next week at the mill. My work schedule is a tad diff than yours, but its still the biggest job I've taken on so far. Not only big, but kinda special, if I get fired.. well, we know the rest.

Enjoy your sunday, whatever you do, and be it alone or with others, enjoy the hell out of it, mkay?!

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Fri, 04 Dec 2009 01:27:43 -0800 whoops AKA Day 30 http://aml.ohhh.no/whoops-aka-day-30 http://aml.ohhh.no/whoops-aka-day-30
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It was bound to happen, I slept a little too much this morning. Came 30min late to the bloodtests. I'm just teasing myself with whats to come. Sleep till 11-12, my body and mind misses that, so much, you cannot believe it. So this is my last test at Haukeland for 3 months, but come monday I'll get my sorry arse to St Olav and do one of the two visits a week I have to do there. Its by no means over yet, far from it, I'll spend many hours at hospitals the coming years. I'm ok with that tho, its become somewhat of second home to me. Easier to deal with it if you think of it that way. I'll leave you with a mugshot of a very sleepy yours truly. So sleepy I could fall asleep standing up, hope I get on the plane before I do! Pz

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Thu, 03 Dec 2009 03:05:31 -0800 This is a sad, sad day http://aml.ohhh.no/this-is-a-sad-sad-day http://aml.ohhh.no/this-is-a-sad-sad-day
Didnt get much sleep last night, had this naggin feeling today wouldnt go well. Boy do I hate to be right. Blood values are all good, even the trombocytes are on a rise. And the bonemarrow? Well, its all good, no bad boys left in my body. So what this means is that I have to go home, leave this fantastic place on earth called Berrrrgen. Im so sad, only comfort is that I'll come down here every 3rd month for check-ups, it does help a little. Oh well, I cant have it all I guess, leaving for ~/ tomorrow, now I have to magically make room for all the new crap I got that I didnt bring with me down here. 

Yeah, this day couldnt be any worse.. 

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Fri, 27 Nov 2009 14:28:32 -0800 Hotel Haukeland http://aml.ohhh.no/hotel-haukeland http://aml.ohhh.no/hotel-haukeland
Moved over to the hospital hotel on tuesday, very tired, feels like I nap more than Im awake.
Blood values are good, but far from perfect. I have a healthy appetite, but body cant handle much at a time, 
so meals are small. But its enough to keep a fairly stable weight.

My good bud Per joined me on wedn. we share a double room, yes, good times, especially when Im awake. :X
He'll leave for Thailand next sunday, 6 weeks, oh how I envy the bastard. Good for him tho, he need some tan,
the pale fawk.

Only thing I know for *sure* is that there will be a bonemarrow sample done on wedn., those results will decide my future plans, in more ways than I care to think of.

I will update when I feel I have strength & urge to do so. Im tired, not only physically, but mentally Im scrubbed. So pretty please(and for the last time) do *not* ask how its going, how I feel, if there are any news etc.. I will update *here* when there are any important changes.

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Tue, 24 Nov 2009 06:30:32 -0800 A week has passed http://aml.ohhh.no/a-week-has-passed http://aml.ohhh.no/a-week-has-passed
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And my lil sis is leaving in 30 min, will miss her, just look at her.. Much love.

In other news Ive packed and ready to move over to the hospital hotel. Will come back with more ones Ive settled in.

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Sun, 22 Nov 2009 04:18:27 -0800 Why its hard to gain weight http://aml.ohhh.no/why-its-hard-to-gain-weight http://aml.ohhh.no/why-its-hard-to-gain-weight
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Inside hospital walls, this they call lunch. What a tasteful presentation, I could have made this both taste and look good blindfolded. I hate bigkitchen production, with a passion. Oh, have I mentioned that they ask what you want for dinner around 9 in the morning? I get the reasoning, I just hate it. Arg!
Atleast the hotel got decent food, just a few more days, just a few more days.. I have a huge appetite now, but I dont force my body with tasteless crap, ffs!

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Sat, 21 Nov 2009 07:04:04 -0800 Better late than never, or the early edition? http://aml.ohhh.no/better-late-than-never-or-the-early-edition http://aml.ohhh.no/better-late-than-never-or-the-early-edition Whatever you prefer, another "sunday" update is due, I know its Saturday,
dont worry. I was in the spirit of writing something, first time in a few
days, so better GIT to it.

We left off after my third round of Chemo, at that point I was in full
remission ie. cancer free. The chance of a fall back was as I mentioned in
a post or two ago 50/50. The docs at St. Olav had allready been clear that
I was in a group that would benefit from a bonemarrow transplant, but this
was for me to decide. Like I would know the first thing about it?!
I had allready read up alot on AML, and felt I had a understanding of it,
but bonemarrow transplant, that didnt sound good, the more I read, the
scarier it became. So many things could go wrong during the post-op
periode, I felt ill just thinking of it. But I eventually had to make a
choice, so after playing devils advocate with the docs at St. Olav, I felt
I atleast should fly down to Bergen and meet & talk to the persons who
would perform the magic. Cause this is all magic to me, to this day I
still cant believe how it works.

For me the scale tipped in its favour after reading a recent study on
JAMA(The Journal of the American Medical Association), where AML
patients in my sub-group benefited greatly from a transplant when they
were in first remission. Another very good point made by Dr Sjo was that
they might not be able to get me in remission if the cancer returned.

But lets jump back a bit, my bro & I left for Bergen and where supposed
to have a 2 day show & tell, where hopefully most Q's would be answered.
I was warned by the nurses & docs at St Olav that this could be a hefty
trip, they were known to talk straight & leave no gory details out.
I didnt quiet get why this was a bad thing, its just how I want it ffs!

I didnt find it scary or gory at all, I had read up as best I could, so
there were not that many new details to me. But it was re-assuring to
meet the people that I would hand over my life's outcome to.

We had planned this to be a last bro's before hoe's tour, and had set
our minds at hitting the bars that evening/night. But we should have
known that wouldnt happen. During the blood works on day 1 my bro
started to feel sick, pale, had to lay down. And eventually ended up
getting married to the porcelain god the same evening. I couldnt be
close to him, so I walked aimlessly around and tried to kill time as
best I could. Next day his shape had not improved, so I flew solo
during those sessions as well. A bit shame really, cause alot of the
info were aimed at the donor. We had to post-pone departure with a
day due to him being sick. But we both agreed it had been a great
bro's tour, you might say we set the bar low, and you might be right.

I could still pull out, but not to loose a "slot" in the queue, I
decided to initiate the process while we were there.

After we came home I ones again started the mental prep, this is no
doubt the hardest part Ive found. I can take physical beating, to the
point where its just ridiculous, but loose your top-floor, and all is
lost. Going through any serious illness where death is breathing down
your neck, your mind is what win or loose the battle in my opinion.
My approach is to disconnect, and tap in every so often, I know it
might sound odd. But you cannot be "in it" 24/7, you will go stark
mad if you do. I pictured the post-op period to be 3x as bad as the
first high dosage chemo. I dont think *anything* can be much worse
than that, ok, water boarding & a week of hefty torture perhaps..

I ate alot too, whenever I had a craving I tried to satisfy it, I
knew I would loose weight, but had no idea how much. So those that
visited me at home during that time would see me chew on something
most of the time.

I think we are almost caught up to todays events, no? If you feel
something is missing, feel free to throw questions my way. Either
here, via µblog or email: aml (AT) ohhh (DOT) no

Oh, right, the pictures? Nothing big really, just my first walk
outside since isolation. Muhahahaha, oh yeah, it felt as great as
it looks.


21112009099-first-walk-since-i 21112009100-first-walk-since-i
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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth Wed, 18 Nov 2009 09:10:00 -0800 Thank you http://aml.ohhh.no/thank-you-2362 http://aml.ohhh.no/thank-you-2362

18112009096

Who ever sent me the case, you totally rocked my day back into track. I got the smile of a kid in the candy store!
Much love

EDIT: The mysterious FROM: of this great gift have stepped forward, Kristian King of E.C. Dahls & Hermann Ørn. Hope to drink a tall draft from E.C. Dahls with you guys soon, thanx. I still smile. :-)

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]]> http://files.posterous.com/user_profile_pics/502196/kjetil-bw.jpg http://posterous.com/users/36jza7G0uFgd Kjetil Hoiseth aml Kjetil Hoiseth