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 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 giraffe slippers. that’s what fits. and they’re cute - they’re CUTE!!!!!

update on me:

close to c-mas i ended up in the er thinking and writing (very slowly) in english but speaking in what i found out was french. my friends on the east coast got me an ambulance. the head male thought i was drunk. the head female knew i was not (where did i hear that before???). net-net: i had a small stroke which required 15 very, very short sessions of radiation.

i have brain cancer.

i’m having a very bad reaction to something. i think it’s the arthro - which i had to take to get over the pain of the port removal -  and residual pain - because everyone in oly and lacey was out of oxy. since, like ibuprofin, it’s an NSAID and has the same side effects, i’m taking ibuprofin now - weeks later. don’t ask.

chemo (finally) tomorrow. senior doc being more doc-like.  junior doc being a futz. (she didn’t even remember to put the arthro in the computer. must have a new girl.)

i *heart* my boots and slippers (but my slippers more cuz they’re funny - and warm).

little dog died late in january. nothing to say, other than i’m going through a depression and he’s not here to help out. i miss him terribly and wake up crying from missing him. almost 17 years. tears. random tears.

i can’t get clean. my skin looks and feels like fish - and it’s everywhere. cannibal says it’s another reaction. all i know is baby oil only makes things worse. just call me pigpen.

i woke up on c-mas day completely bald (hair everywhere!!!) and 25 pounds heavier - seriously. thank goodness i wore something loose to sleep. when in doubt, eat cookies - and after i finished off mum’s cookies (which were sooooooo good)  i made my own. coconut, brown sugar and a few choco chips. so there!!!  and they were also so good. not as good, but pretty damned good!

everything tastes like salt.

the doc who put the port in had to be convinced to remove it. i did not know that the argument went so far. all i know is they hardly ever used the port because it was always infected. the taxi driver didn’t even want to take me to the grocery store - despite the fact it meant more money for him. he just wanted to take me home to sleep.

my sleep cycle is strange.

so is my dream cycle.

i keep dreaming of aw. it’s b&w. and brown. and green. mucky green.

mucky green.  why in the hell am i dreaming of him?

upon having the port removed i, immediately, felt much better. the following day, though, i had to get the packing removed. s tried - to much screaming on my part. b tried with lidocaine with more success - but not without some screaming.

i’m not a screamer. really. not. a. screamer.

all in all it went ok. on saturday i did have to take 3 arthro to get through the pain, but that’s it. some days one. some days none. now i get ibuprofin. we’ll see.

for now, that’s it. more later. tomorrow. a week from now. a month from now. whenever.

i miss you.

i’m not dying.

today.

i have brain cancer. news later. now i have to breathe. and be silly.

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?

oh my…it’s been a long week. work has been busy. treatment happened (and sucked as it usually does). i bought new knives (and a sharpener - gotta love amazon) and might get new pots (despite the fact mine are ancient they’re still in perfect condition because they’re tools - but my cooking style has changed sooooo much, though, i think they’re feeling unloved and unappreciated - so it might be time to gift them to someone that’s going to love them as much as i do). my back hurts (thanks to the chemo) unless i’m resting on the wedge. i’m sleepy. i might be in remission. i’ve made arrangements for a certain “group” to be gifted with very large-pawed puppies within the next three weeks. (it’s a cutie group, that’s for sure. and it’s not one of those stupid, inbred pure-breed groups.) i “played” (sent messages - none of those super poke things that can end up with a 2 X 4 to the head) on facebook with a group of new “recruits” (aka people who got sucked into the time suck invented by a group who is not even the demographic). a colleague proved that “lazy-assed” gamers can contribute a hell of a lot more with little to no solicitation than the clueless susan komen “i am celebrating *me* by raising a shitload of money for some admin’s pocketbook because i’m too clueless to know better or, *shock*, do my research” can. (do “the voice”, people. do” the voice”. and by all means wear pink head to toe because we all know how important pink is.)  i managed to only be forced to buy only two (!!!) “pink” useless, lying products this week (and prided myself in *not* mentioning to the guy in line behind me - the guy controlled by his “pink” wife who is just too clueless to understand - that the yoplait “pink labels” he spent so much time picking is nothing but a lie and in fact contributes to the propagation of the disease, not the cure - let’s hear it once more for corporate amerika and self-induced brain-deadness). yeah, it was a long week. the normal. the usual. ish.

and i’m hungry.

poop.

well, at least dear S helped me out with my tennis ball hair (which has to go asap - it’s fugly to the 25th degree and feels like something  one would find at the bottom of a very dirty dry laundry basket). and at least i know that dumbasses mean more in this world than people who do their homework and research and don’t rely on tv. guess i should go watch fox news now. or something.

nah…

instead, i’m gonna go get ready for the fun of later (5.5 hours later in fact) today: a conference call. on a toll number. that we can’t claim. that’s sure to announce something as interesting as obama running for president. yeah. that interesting.

yesterday afternoon i went to the grocery to pick up some necessities, some things to experiment with (3 pounds of tofu anyone?), and some things just for the hell of it (sure - i absolutely needed that second quart of bolthouse farms mocha thingamagig that is so filled with sugar i would drink it and swing from the trees if tree swinging was an option) and encountered two cub scouts and their pack leader dad. hmmm…very early for the cubbies to be selling - but i couldn’t figure out why they chose thanksgiving time to sell in the past anyway, so the earlier date makes complete sense. anyway…they were cute enough and nice enough - but really didn’t exhibit much personality. regardless, we all spoke politely - and i agreed to come back when my shopping was done to make a purchase.

it should now be noted that i was wearing a hat yesterday afternoon. the rainy season appears to have come down on us - and i’m not a huge fan of random liquidy drop o’stuff falling on my tennis-ball head.

so i shopped, got the promised cash and went back out to see what i thought was going to be 3 very dull but polite people.

wrong.

mum and the daughter showed up. the cubbies either ate some kiddie crack - or daughter and mum pumped them full of sweetie sweets and sugary drinks in my absence. even stoic dad was acting more than a bit, ummmm, outspoken. yeah, that’s a good word to use for a man who tries to get people’s attention by shouting out silly phrases and the like. either that or he had a few beers hidden under the table - but i didn’t just say that. anyway…so we’re outside and talking and being stupid - and the littlest cubbie (about 7 i think - old enough to have some permanent teeth and an obvious sense of his unique self - but not old enough to be anything but a little kid) says something about the fact that he’s cold and i’m not because i’m wearing a hat.

so i asked him if he wanted me to take my hat off…to which he responded in his best cheek holding “home alone” immitation

“aaaaaaaaaaauuuuuuuuuuuuuuuuuuggggggggggghhhhhhhhhhhhhhhhhhhhhhhhh”.

the rest of the family went silent, until the daughter whispered “that was a terrible thing to say”.

mom demanded he apologise to me. dad slunk away. the other cubbie, i think, might have crawled under the table or something because he disappeared from site.

i burst out laughing until tears ran down my face.

so i said to mom “no need to apologise” - and took on the kid.

“you know i’m sick, right?”

“right!” (he was such a definitive thing to boot.)

“and you know the drugs that will make me better make me bald, right?”

“right.”

“so you know i’m bald, right?”

(and this is where i had no choice but to get a heartwarming, squishy feeling)

“oh i was just teasing you. you can take the hat off.” (see above re definitive - and throw in some double duhs.)

so i asked the cubbie what kind of popcorn he likes - and he told me - so i bought some and handed the box to him.

and he looked at me with such a happily surprised look on his little adorable face i wanted to melt into the sidewalk.

note to parents: your kids are not stupid. they’re just really short and undereducated. so educate them. eventually the short thing will wear off naturally.

note to kids: once you’re educated, spend some time educating your parents. just because you’re short doesn’t mean you don’t know anything. in fact, you know far more than most people give you credit for.

note to all: do a good deed daily: educate someone. and if you happen to be gainfully employed and in possession of some disposable income, buy some popcorn and give it to a cute cubbie. lordy knows you don’t need it - and the scouts will be grateful for it.

there’s this hotel on portland everyone who thinks they’re anyone is buzzing about. it’s called the ace hotel. the hipsters (the ones that buy $150 “new and unused” tee shirts they could have found “used and naturally worn out” at goodwill for about $1 or less) have made this “their place”. every blinkin’ magazine is giving the place kudos for being so “hip”, “cool”, “alternative”, “[insert today’s buzz word here]”. but nobody - not one single body - is mentioning the reason why this lame-assed, recycled soda-bottle wearing non-hipster loves the place so much:

the people that work there are nice. genuinely, honestly nice.

i stayed at the ace just a few days before the diagnosis. by day two i was feeling pretty terrible and couldn’t walk more than 50 feet without having to stop and recover (thanks to the respiratory distress).  the folks at the ace, without my asking, saw that i was having some problems and took it upon themselves to try to help me feel as comfortable as possible. they volunteered to get my much-loved stumptown morning iced latte for me (and not go through the usual room service - just call the desk and they’d get it for me). they volunteered to come get my luggage on check-out day. they insisted on taking my luggage out to my car for me (despite the fact i took over 30 minutes to walk the two blocks to the parking area, rested and drove back to the hotel entrance - only to have the lobby filled with checkers-outers). and let’s not even mention the folks at clyde commons, the attached “restaurant of the day” in portland.

i have to admit, i did not eat at clyde commons. feeling the way that i did the idea of getting adverturesome was not something that even remotely came to mind. i went to clyde’s after the seminar each day do to regroup, gather my notes and get away from myself. one day when i walked in and took a seat at the bar, i mentioned to the bartender that i wanted “something”, but really didn’t know what that something was. he just sort of looked at me, then asked “do you like orange juice?” i replied that i did - so he went to the refrigerator and pulled out a glass vial covered with clingwrap. he asked if i like it a little or a lot - to which i replied “pretty much” - so he poured most of the vial’s contents into a glass for me, added a straw and set it in front of me. then stood there. i tasted the orange juice. omg. it was spectacular - perfectly sweet-tart, no pulp, luscious beyond words. as it turned out the bartender had spent the first part of his shift hand-squeezing the juice (which amounted to just over an un-iced glass). it was meant for some of the specialty cocktail hour drinks (all served in iced glasses). i drank almost all of it. he had to go squeeze more. i felt so badly about it i volunteered to pay for the drinks it was meant for. he charged me for a large juice, which was something like $2.

so, yeah, the ace hotel and clyde commons are getting written up everywhere as being “the hip place to see and be seen in portland” which, i’m sure, is helping them get their grounding in and helping them get past the usual “how to get popular quick” dreck that hotels and restaurants have to go through if the press isn’t all over them. for that i’m glad. they’re good establishments - and i look forward to getting well and paying another visit sometime soon. meanwhile and to non-hipster me, they’ll just be two places staffed by very nice people.

and i’ll bet money that if i show up their bald the little hipsters will think it’s cool. (i’ve heard rumour that headshaving is the latest rage among the <28 women in portland. wow. i’m a trendsetter.)

it’s so funny. a lot of people ask me how i stay upbeat and face the world with such a definant, f**k you attitude. well, thank you. i’m glad you asked. here are your answers:

(1) what purpose would be served by my being all morose and wheepy? things like that accomplish nothing but red eyes and runny noses.

(2) what purpose would be served by my being all morose and wheepy *and* relying on the susan “corporate amerika” komen foundation folks to feed me the information they think i need instead of doing my own research, taking charge of my own life and *not* buying into the morose and wheepy (among other things) crap they spew and subsequently, i spew, all the while making it seem to the average north american that they’re truly an authority that “knows” and “cares”. (note: this is going to be my last explanation of my feeling about susan komen. i do not believe she was as afflicted by “self imposed ignorance” as some people imply. i also don’t believe she was either as educated or ignorant as other members of other “camps” have implied. i also don’t believe she believed the komen foundation would become an organisation that would take her name and use it to “sell the drama”. and i’m going to reserve my opinion about that cow-faced, scarier than pennywise, fame-seeking despot sister of hers until a later date. all i’m going to say is she’s scarier than the monsters that hang out under kids’ beds - and has far less of a fashion sense.)

(3) what purpose would be served by my dressing head-to-toe in j&j baby lotion pink (and who in the hell came up with the idea of making the breast cancer “ribbon” j&j baby lotion pink? coincidence or planned action? you be the one to decide) clothes and being interviewed while being morose and wheepy and, probably, wearing some sort of fake hair (not a wig, but fake hair parts as sold by various “cancer is pretty” stores) under a stinky-butt ugly head covering (read “something that the cat buried in the dirt because it was so offensive”) and spewing the burnt shit they serve up and eating it intentionally, just like the dumb as a box of puffed wheat but not nearly as tasty good little breast cancer victim i’m supposed to be?

open your damned eyes - especially you “women” (and gods know i hate, hate, HATE being associated with you wussy-assed beings who do nothing but pollute the world with your vileness and self-imposed ignorance) who whisper in loud tones, look away from me - and tell your children not to stare at me - or ask you (the one they trust to be nothing but honest with them) why i look the way i do and act the way i act.

(4) if you’re a us or canadian born and bred female over the age of 30, you have a 1 in 7 percent chance of looking like me sometime during the course of the rest of your lifetime. do you want your offspring to do to you what you’re teaching them to do to me? do you want them to fear you the way you’re teaching them to fear me? when your hair falls out and you get skinny, to you want them to think you’re as ugly as you think i am (or imply that i am, i guess i should say) and are teaching them i am?

(5) you don’t know me. but maybe you should. because that upbeat, defiant, f**k you being i show to you is me, not what someone tells me i should be. you’ve got a better chance of being afflicted with cancer than you have surviving the rest of your life unscathed. so maybe you should eschew the susan “corporate amerika” komen foundation bullshit, rub the bleach off your teeny bleached braincells and THINK for yourself.

i’m glad you asked. aren’t you?

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.