thisismydisease.com

i feel like seagull poop. no, i feel like seagull shit. smelly.

last time I saw Cannibal, he told he was starting infusing me with zometa - and i should google it (favorite thing to say to me, but who can blame him as most of his clients are over 80 and don’t have internet access) to see if it’s for me. well, it’s not for me, no more so than alcohol is for alcoholics. do the nursies listen to me? not “no” but “hell no”. i got the zometa despite not wanting it. and they didn’t weigh me so they, most likely, gave me enough for someone of much more weight (like, 50 pounds more weight). so i’m falling all over the place and scaring olivia. and messing myself up to boot. (can you say “blood everywhere”???)

i’m glad i got laid off (although it was illegal for them to do that - bossie didn’t know the laws, especially considering i was working at least 42 hours every 4 days).

and i’m glad my neighour phoned social services! maybe now i can live out my life - and littler dog can live out a part of her life - in peace. hey, maybe i can learn how to use that rangefinder before i die.

i’m tired - and my hands are frozen due to the zometa.  even B’s blanket won’t warm them up. Littler Dog is doing her best to keep me entertained.

my head hurts.

i  want everyone who has never had a horrible disease or cancer to undertake chemo. see how YOU feel watching every moment of your life - and being sleepy - and being sick. and i hope you ENJOY waking up at 2:00 am and staying that way for 10 - 12 hours, exhausted but unable to sleep. and i hope you LIKE eating every 2 - 3 days.

i want you to hurt like i do because that’s the only way you’re going to learn. or not. maybe you’re so self-obsessed that nothing can hurt you, and you think you’re immune to everything that is less than how you see it to be: perfect in your mind.

I want you to hurt like i do.

i want you to hurt.

and facebook people (i hate “peeps”), notice how the beginning of this blog post resembles a facebook post? well it’s because there is not one piece of software or ria that i can find that will handle it all. soon…but not now.

i’m gonna go snuggle littler dog.

…but i still can’t eat much of it (only two miniatures per day).

my ears itch…but this will pass (i have the cut on my knee to prove that).

i cannot force myself to eat save for every three days (and doing so requires me to take prilosec and results in severe heartburn) - but at least i can eat sometimes. and i do take vitamins.

i have a headache.

the taxi driver was an hour late.

i met a guy who’s also open source. we laughed about centOS.

i slept, off and on, from thursday evening til saturday evening. so much for a holiday.

i have a headache.

i cut my nails again today. third time. only one bleeder. i should be thankful - but dayam it hurts!

my teeth are breaking and/or shifting - and as of right now, i cannot go to the dentist without some sort of decree. my mouth hurts (as it should) and is all funny.

everything tastes like salt. lotsa salt.

my nose is bleeding. my mouth is bleeding.

geico (great Web site - but even better customer service) cancelled my premium.

it takes me four times to do what an average person does, thanks to the brain cancer (which is doing well i’m told). or very weird reaction.

i miss little dog.

i go to the grocery. one day, i went to Rainier. that’s it since i got on the radiation bandwagon (which i’m off of, but i still hurt because of the chemo).

i need to get out.

but i get sleepy.

i’m off drugs. nurses don’t understand. “we don’t let anyone live with pain”. but i *WANT* to live with pain. so i will. occasional ibuprofin. it’s not like cannibal junior didn’t prescribe NSAIDS which the pharmacist had to call about!!!!

all in all, most people would want to die living the life i live.

but…

…i want to live.

and certainly don’t disregard me.

i sleep with little dog’s blankie on my bed - something he didn’t do.

i have slept for hours today and need more sleep.

please don’t hate me.

two computers died. not one, but two. the mbp officially bit it. the imac officially bit it. i’m now the proud owner of two dead macs - and a mb - which i may or may not get reimbursed for - and which cost over $1K (unlike the original of the computer with lesser specs, which cost over $3K). the lenova, at about $400 or so, i could’t get arrroved for. at all. i never even got the monitor because it was given to me *after* my furniture left raleigh and i had no room whatsoever for it in my car. so i gave it to a colleague and now, picked out my own. per me and thanks to the dead imac. i picked an hp due to the fact it’s an incredible monitor - and the fact that it’s 1/3 the price of the equivalent apple. hell i couldn’t get an apple for under $699.  or is it $599? regardless, i got a new monitor for far less money than i should have paid because i paid too much for a computer i may or may not get reimbursed for. and truth be told, i don’t want to be. i bought 3gigs of RAM - which amounts to 2gigs more than i originally had. i bought a monitor - one worth viewing my photos on and certainly not what would have been purchased for me or given to me. that one would have cost under $100 for a major-assed square box with no colour control.

in other developments, it was only herceptin this time (and next). my skin is so naturally smooth now - and my teeth don’t hurt as much (but cannibal junior is starting to look for a dentist for me as the chemo has destroyed my mouth - and i’m still not allowed to go to the dentist without getting knocked out).  my feet still hurt - but not need-an-oxycodone-every-four-hours hurt. i can get by with six. sometimes seven. besides, they’re only 5mg each, so what do i care? hell my little nephew takes a stronger dose. my hands still ache, though. no nails worth talking about. it’s going to take 4 full months for them to grow out *if* they grow out at the normal rate. anyway…

i hope the next cocktail will be different. this past one was horrible to the 85th power. now i can eat (sort of). and bake. and did i mention eat? things are still more than a bit strange - but it feels good to *almost* taste things the way they’re supposed to taste. it’ll take about a year post-chemo to get my tastes back - but this will do for now. couple this with everything else and, well, you have what you have.

oh, my brain is still really fuzzy. really, really fuzzy.

syd likes me though. he follows me around and gives me kisses. he stinks, but he gives me kisses.

i do like his kisses, even when he stinks.

ms. a took most of what my sil sent to hand out to the folks at the shelter. i really can’t eat a lot of is due to bad teeth and having different tastes by the minute. that’s fine. good, actually. people who can use it are getting it - and that’s all that matters (especially with this economy). i appreciate having someone to go out and feed those whose eating habits are bad because of that’s transpired with them. so brava to sil and ms. a.

so now it’s sleepy time. must relax. eat pumpkin pie (with or without crust - depends on a lot of things). drink my favourite drink (sans chocolate - i crave chocolate  but cannot eat it to save my gimpy soul). sleep well. and throw small soft toys at the tv. michael symon is on - and i do want to mame him. severely. good news is robert irvine is coming back to di in march.  does that mean he gets to come back to iron chef too - or do we have to endure any amount of that creaton? and if so, can we hurt him and get away with it?

i realised, when i woke up from a much-needed afternoon nap, i was sleeping curled onto my left side.

it’s the first time since february or march.

i quit working today at 3:00ish and went inside to rest. by 4:30 my laptop was slumped in my lap - and i was slumped in the wedge. the ringing phone (at 7:30) woke me up .

get up .

feed little dog.

pee and poop little dog.

eat dinner (yogurt with special k and wheat germ).

take supplements.

crawl back into the wedge to rest some more.

it’s now midnight. i’m going to pack it in and officially go off to sleep.

it’s all well and good to work a kajillion hours - but it’s more well and good to sleep.

notes for cannibal and/or cannibal junior: check.

notes for nurses: check.

grocery list for post-treatment shopping.

cheesy magazine: check.

ikea 2009 catalogue: check. (i need new coverings for my patio door - the fussy sheer curtains just aren’t doing it for me and, frankly, look out of place in an otherwise mid-century modern house.)

instruction book for vidcam that’s been sitting here for one day shy of three weeks while i hid (or should i say continued to hide) in my cave and dealt with mental stress: check. (jezuz christ on a cracker i have literally had no recovery time in a month because of this bullshit.)

extremely extraordinary book: check.

tissues to go with extremely extraordinary book: no-check. they will be pilfered from the nurses’ station.

cereal bars: check.

extra socksies (so i don’t have to walk around on ookey floors in the same socksies that actually touch my feet): small-check. they’re in the laundry basket and just need to be picked out.

hat: check.

dwight or candi: no-check. they’re still vying for position, and i’m still trying to decide which to bring along. (basha, meanwhile, is just sitting here resting up against my laptop and not wanting to do anything but that. [i moved her to a new location for less than 30 minutes, in fact, and she was so miserable she kept trying to squirm back. so i move her back. she’s happy where she is.] zola’s sleeping in the bedroom. shelly’s hiding in the closet and making her escape plans [she wants a new mummy - and i want to make her happy - but i’m having a lot of trouble finding someone that wants her and is willing to live with my rule - which is no sale, ever, no matter how much she ends up being appraised at] and the little ones are having what’s either a party or a brawl in their box - i’m too afraid to look. all the real stuffies are where they like to be and all cozy and happy. except, that is, for the cows and winkie. aw, who they were gifts for over the years, shoved them in my garage in the bottom of a box. they’ll be going for a ride in the washing machine and dryer tomorrow - then picking out where they’d like to hang out for the immediate. )

blankey for keeping warm and snuggling up with: small-check. it’s on the back of my desk chair right now. i’ll grab it on the way out.

port-appropriate shirt for bloodletting and chemo infusing: small-check. i know which shirt i’m going to wear - but have to unearth it from its drawer.

jacket to wear over teeny tiny port-appropriate shirt: small-check. it’s in the closet. i’ll put in on after the shirt.

well, isn’t that a lot of things to be toting around? i’m sure the average person would say “well, duh” - but the average person doesn’t have to spend up to five hours attached to a machine and, for the most part, sequestered to a horribly uncomfortable, vinyl-covered lounge chair. and with no wi-fi. how too old school for words. of course i hope to get in a nice fat nap while there - and if i do this will all be moot.

On friday night, I took the time to wrestle with the three-part bed wedge and get it assembled as it’s meant to be fully assembled. It was no easy feat for someone who can’t, right now, grip a door knob, let alone a zipper or two - so I’m pretty proud I was able to muddle through it. (I, seemingly, have such low expectations these days, don’t I?) Anyway…

I managed to wedge the wedge into the bed and wedged myself into the wedge in the bed - then settled in for my night’s sleep.

One thing that should be brought to light is once one is wedged into a wedge that’s wedged into a bed there’s not much movement that can be undertaken. Pee in advance.

Another thing that should be brought to light is at the outset, the wedge feels much too hard to be comfortable for less than a few minutes, let alone a full night. Mysteriously, though, that hardness rapidly vaporises away and one is left feeling swaddled, cradled even, in a womb of memory foam (and adjunct pillows - I like lots of those) (and Zachybear).

With all of the pieces of the wedge in use, the angle of the top seems to be far less severe than when used alone. I guess it’s the angle of the knee wedge that helps trick the body into thinking one is not propped to such a high angle. Couple that with the final wedge - the one meant for the legs to rest on while sleeping and…

…I assume the night was well spent. I slept until after noon - and woke up feeling rested, relaxed and revived. Well, until Little Dog decided to come in and growl at me, that is.

Night #1 of wedgie sleep over and out. Let’s see if night #2 brings the same sweet results.