Got AML?

I do

42

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

Posted March 31, 2010
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Friday fun

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?

Posted March 19, 2010
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Life aint so bad

When its sunny, if only the temp could be +15c instead of -9c

Posted March 5, 2010
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Mugshot 3 month bday

Now, with extremely potent flash! Slowly things are starting to grow back out.

Posted February 5, 2010
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Guess who's back?

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!

Posted January 12, 2010
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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.

Posted January 10, 2010
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You're it! Hell no, you're 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!

Posted January 8, 2010
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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. 

Posted December 28, 2009
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Dude, move over

There's plenty of room in here!

Posted December 23, 2009
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killing in the name

Kinda hard to jump, play and take a picture at the same time. But there ya go macno, ho ho fawking ho! :-)

Posted December 21, 2009
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