Got AML?

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.

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!

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. 

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. 

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.

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?!