thisismydisease.com

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.

sort of.

i had them run the dexi for an hour (instead of 30 minutes), in the hope that i wouldn’t sleep so much two days later. well, i didn’t sleep so much - only 8 hours - but not 8 consecutive hours. two hours here, two hours there. thankfully, Dewey (the book, that is) was around and kept me company. it really is a wonderful book. you should read it.

in other events, i have a gummy bandaid on. the nurse - one of my favourites - did not believe that i spurt. oops. i hope i didn’t get her in the eye. now i have to find replacements - and learn how to apply them.

and olivia is coming for a visit! little dog, little dog! i hope this helps. i’m feeling better than last time - but i’m not feeling that good right now. maybe cannibal will give me a break.

somehow, i threw the alarm. now you never think about alarm clocks, but i had no choice but to, given the fact that after not ringing at all it rang at 2:30ish am regardless of what time i set it for. i ended up buying a little one - only one ringer and sound. let’s see how this works. and hope i don’t throw this one.

thwump.  thwump. thwump. golfers don’t know how to golf - which is why my front yard looks like a playground. front yard. that’s right - front yard. not back.

sun showers. sun with rain. annoying! i went outside to get the water bottles and got deluged. now my socks are wet - and i’m too lazy to change them.

and to the box that was supposed to arrive NEXT week but arrived on the 29th: you’re lucky. just lucky.

stage 4 cancer sucks. this whole ordeal - which has gone on for almost a year - isn’t nearly as cute and cuddly as a new baby, or puppy, or kitten. it’s a lot of hard work.

i’ve had to shut off my bedroom phone to sleep (and yes, i do sleep).

i’ve had to shut off my bedroom phone to work (and yes, i do work).

i’ve had to shut off my bedroom phone.

but olivia is here and loving life. well, as much as a ten-year-old can love life. she’s relaxing in the living room and due to go out for her potty break. she has some issues - but nothing that can’t be taken care of by my vet.  she likes syddie’s bed. i was going to get her a new one, but she likes his. he didn’t. she’s really a little dog - only 12 pounds. but cute. pictures coming soon!

i need to sleep, but olivia will keep me awake. somehow, i think she’s just the ticket.

later…

well, olivia didn’t keep me awake. she stayed in syddie’s den. didn’t eat. didn’t drink. she’s back so far i can’t reach her.

smart girl.

or dumb.

whatever.

later…

i fell today. well, not really *fell* but went down on my knees and couldn’t get up.  i had to crawl over to my white chair to get up. embarrassing, yes.  but more humiliating than embarrassing. now i’m all crunchy.

truly, i cannot tell when someone is going to get sick during chemo. for the longest time nobody got sick - then two people in two consecutive treatments. one older woman coming back, and one younger guy starting (i think). the older woman required a doc - and she was trembling so. the younger guy should have but did not accept doctor’s services.

we don’t even talk about the young woman - a non-patient - eating eggplant  parmasian - something i would love to be able to eat but can’t because it tastes horrible to me, the nearly-vegetarian. and she was rude.

he had a fever of 102. they gave him tylenol.

well, that’s it for now. have to go coral the doggie. and sleep (despite the fact my new alarm is 8 minutes fast and can’t be adjusted - i should have read the recent reviews) .

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.

i have to make choices. write an email - or update my blog.

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?

people are so excited i’m finally wearing footwear other than randomly purchased slippers come on, folks, you didn’t just love those toggle red fleecy things - or the ones with the lumberjack lining) that pictures have been demanded. since all of this has happened pictures haven’t been at the top of my list of things to do (breathing comes first, followed by eating something that tastes remotely not yuk) - but i have the following to offer:

black toemales are simple

pumpkin mary janes are keen

i’m still extra pleased with the simple shoes - but the keens kinda hurt - which is so odd considering they’re the fourth pair of keens i’ve ever purchased, and none of the others ever needed break-in time. oh well, i’m sure they’ll be just fine if i keep wearing them. it’s only my left big toe - so maybe a little soaking of said shoe in bubble-filled water is in order? ok the bubbles are selfishly for me - but if i have to put a shoe-clad foot in water, it may as well be bubbled. meanwhile…

i purchased sesame sticks and aminal crackers (among other things) in the fm organic bulk bins. the sesame sticks are extremely salty - and the aminal crackers have this odd sense of maple. now granted i do like maple syrup (pure only - none of that mrs. butterworth’s stuff, although she is cute on the geico commercial) - and i don’t dislike salt (sea or kosher only - no substitutes), but it has to be in very small quantities. i might have to have amber taste these. it might be me - or it might be what things actually taste like.

i’m tired. it’s been a long day. i’m feeling good - but a little sleep  might be in order.

i tried to open my sil’s package today. i know, from yesterday, it was going to require a garbage bag for the peanuts alone - and gods know what for the packing paper. i geared up for it. i planned for it. i got about 1/3 of it done before i had to both abort the mission and crawl into the wedge to relax it all off. at the rate i’m going, i might have the whole thing done and fully open by sunday night. i hope there’s nothing melty in there. or alive. that would stink. actually, it should, so i guess i’m back to only melty.

it’s beddy bye time. i need to breathe into my little tube, finish my drink, and nod off into sleepy land.

oh and speaking of drink, all this milk can’t be good for me. oh well. the gogi berry ended up across the room with a substantial amount of force. milk has never done that. what’s a little full fat, weight gain and whatever else organic milk has to offer?

nighty folks.

the day is almost over - and it was a good day. slept late, had horrible coffee (ooh, i will love it love it LOVE IT when coffee tastes good again, if it ever tastes good again), read email (one of which, of course, managed to make things so self-centered she bloody hell can’t even see that *she* is not the center of attention all the time - but then again, she has been like that since the day she was born - so what else is new), smuffled little dog (who was being an ass today - he’s a dork but i love him), had a virtual party, the usual. well, not really. there’s usually not a virtual party involved - but it was a good one. now, it’s time to cozy up with my magazine and digest my home-made cocoa granola, all the while thinking about the tasks tomorrow. it’s been a good day - a day i’m thankful for.

as for “ms. missy miss and the sistahs”: the rest has been edited because i’m sick of doing “for you”. from here on in you lie some more you pay for it.and because you always have to be right, here’s the closest hilton:

Hilton Seattle Airport

when you watch the “chef jeff project” you get this sense of “what’s real”. what’s real is the love he has for these people he doesn’t know. and he doesn’t care about that. all he care about is making them the best they can be - not making them who he believe they should be - mirror images of him with that house and that lifestyle and those “THINGS”. hopefully, they’ll pass that on. just like me. whether or not it’s liked.

but for now, it’s sleepy time.

i was a good day.

happy birthday to me.

happy birthday to me! happy birthday to me!! happy birthday, happy birthday, happy birthday to me!!!

in celebration of “my  day” (which my entire family ignores except mum’s phone call to me - i am, after all, proof that birth control doesn’t work - and i sure as hell didn’t ask to be born) the phone is going off, and the movies are going on. easy day. relaxing day. maybe i’ll tickle little dog and thank him for being around so long. he is special, even when he’s a dork.

to all i owe emails to: i had hope to get them written tonight; alas, the “feeling good” went away almost a quickly as it came. as s said, though, i did smile looking at the spaetzels in the grocery.  and c, you (et al) do even more than you know.

i don’t feel well.

i’m going to go to sleep now. well, at least to rest - and think of that cake i can’t have. ( i think n made a good choice of the key lime.)

hope to be able to write tonight - but if not, please forgive. you know i mean to - and love you.

hugs…ellie

ps: it’s the food network cupcake cook-off. help me every deity known and unknown! this falls right up there with the mummy who cried - CRIED - when she lost to the head artist for dc comics.

pps: cupcakes? whf are these things??? they don’t look like any cupcakes most of my friends would make (or me either). kinda like box cakes with box icing. *shudder*

another week ends; another week starts. i feel like total poop-shit this go ’round. the doc says i look great - and he thinks i’m in remission. i think he’s been hanging out with too many old folks and is just being wishful. either that or he ate too many mushrooms with his post toasties. regardless…

later today is human origami day. some nice rad or other is going to drug me and fold me into some position or other that people don’t belong in and, frankly, can’t bend into without major force and a lot of wishful thinking. lucky for me i’m relatively pliable when drugged out of my mind - and don’t mind being subjected to a teeny tiny spaces. i don’t really understand why so many people do, actually. but if i had to vote, i would say ct scans should require helper people (if they would actually help instead of being buffoons and making more trouble than anything else) or taxi drivers. getting home (or, in this case, to the pharmacy) after this is going to be interesting (as it was last time). oh well.

hey - we can go to seiverville, tennessee and go shopping! and see dolly parton!! and ride some sort of single-person indy-styled karts!!! doesn’t that make you want to rush to the airport (or kill your tv)?

yeah, remission. if it happens, little dog might need to go stay at the pet ranch for a while while i jump in the car and take some travel time. i’ve not been to canon beach for a while, so that might need to be on the agenda. bc, of course, is a given. montana, well, i think it’s snowing there right now, and i don’t really want to drive in snow. now. later is another day. one can never tell what i might decide. if i get to decide.

on a more concrete note, mum’s birthday presents are slated to arrive on wednesday. ‘course this in and of itself is going to cause yet more fighting, irritation and annoyance but i can’t, i won’t care anymore. i’ve got better things to care about. like whether or not monkeys make good pets.

later today is a day of reading, learning, and meetings - the last of which has the pleasure of a software engineer being the guest of honour. if i try hard enough, maybe i can gnaw off my feet before then so that i can have yummy, bloody stumps to bash again the floors. i’m sure he’s going to be very nice. like an inbred, hungry rottweiler is nice. but at least i have that human origami thing to look forward to. whee ha!

well it’s time to get to sleep, to rest, to prepare for later. actually, it was time a number of hours ago, but now it’s really time.  short pop is walking around the living room plotting my demise. i’m hungry (as usual) but nothing tastes worth eating (as usual). all is well with the world (as usual).