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.

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

the doorbell rings.

i think.

i’m tired, groggy, woken up by what may really be the doorbell - or may just be some sort of imaginary noise in my head.

but i’m not about to find out.

i’m alone (save for little dog) and not about to find out something imaginary is really something real, or visa versa.

tiny doggie next door barks and barks. she’s a barky girl - but not that barky. i pee, crawl into bed, get comfortable, go back to sleep.

4 AM

the doorbell rings.

i think.

i’m tired, groggy, woken up by what may really be the doorbell - or may just be some sort of imaginary noise in my head.

but i’m not about to find out.

i’m alone (save for little dog) and not about to find out something imaginary is really something real, or visa versa.

tiny doggie’s daddy next door revs his truck’s engine. he normally gets up and out early, but not this early. i reposition myself on the wedge, watch a little unwrapped, fall asleep uncomfortable and wondering if the ringing doorbells were real, or was i just imagining things.

4 pm

i ran out to do a short errand and was greeting by a very somber neighbour. he introduced himself (as he always does, for whatever reason)  and told me:

another neighbour’s house was broken into last night. around 9:30. they found what remained - one  big mess - when they got back home…and the sheriff came…and he visited the neighbours to let them know, check around… and came back if he didn’t get a response.

we don’t talk.

i wave at them when i drive past on the way from the grocery, when i walk out to the post box, but they never wave back. keep to themselves. the guy on the corner - the other one that works from home and also doesn’t pay an already inflated price for a substandard service - we wave. we say hi. the old guy across the street from him - he waves and says hi. even tiny  girl’s parents wave and say hi. the direct neighbours, we don’t even talk about them. they talk. they say hi. they visit me to make sure i’m still alive, doing as well as possible, eating as best possible. they take care of me and they take care of little dog. and they corner run-away, scared beagle puppies that are afraid of the dark and react by running in circles scared as only puppies can be scared.

i love them.

the people that got robbed don’t talk, wave or say hi. it’s not what happened, though.  something happened to one of our very small group of residents, regardless of whether or not they talk or wave and despite the fact they don’t say hi. something very extraordinary happened to them.

i’m sitting here right now holding back yawns, trying to stay awake for just a little more time. robbery, no matter who gets robbed or why, is never easy on those left not to be victims. my heart goes out to these people  - and i hope that, someday soon, they’ll talk, wave and say hi.

and as for the as**h**es from ft. lewis, the very reason why this quiet neighbourhood i moved into a year ago has gone from not needing to even lock doors or windows to needing weasons (and i’m sure it’s even worse now that the over-abundant houses have gone to auction): next time i see you drinking beer on the golf course or  doing “something” in the middle of 54th i’m going to run you down like the rat you are and teach you a few things your mama didn’t but should have.

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).

little dog has liked me for quite a few days. he’s been huggy and kissy and all of those wonderful things that are dorky little him. he’s still old and stinky, but it sure is nice to have my love back. i think he’s finally getting the hang of the fact the person he can no longer see and smells funny to him when she gets her infusions really is “mummy” and the same person that has been taking care of him since he was a baby. that he’s travelled all over with (including the campground at the end of the world - he wasn’t impressed either). that he looked to for comfort when he was scared. that he lived with in various places and two countries. that he endured life with aw with.

i’m mummy. despite everything.

he still growls at me and bites me for a number of days right after my infusions - but i would imagine i really smell badly to him then. his nose still works (and is still the cutest nosey in the world).

so i’ve had a number of days of having a lovey doggie - and have a few more days to go before infusion day. i know i’m lucky because, thanks to his getting used to the new treatment (or whatever happened), there are more lovey days than nasty days. but i’ve been pretty good about things i think. so would it be that much to ask if little dog would get used to smelling the mistletoe they pump into me and be lovey even more? if it is i’ll understand - but it would be nice. and very welcomed.

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.

working. reading. working. writing. chemo tomorrow. then back to working. writing. i hope to get the reading done tonight.

all is well, despite the working reading working writing chemo working writing but not reading.

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?

i restarted one of the chemos yesterday (my choice - the doc was willing to give me until the next ct scan off of everything except the herceptin). i’m definitely feeing it. i guess the one i didn’t restart (xeloda - the one that does the most damage to my body) - is the one that counteracts this one (taxol). i’ll provide the update later today. for  now, though, it’s time to crawl into my wedge, read, relax, and hope the joys of the oxycodone kick in sometime soon. if they don’t, i guess my feet will be mushrooms flambe shortly.  but before i go, another rant:

who the hell is the idiot that invented this power port thingie? cripes! this time the needle didn’t quite land exactly where it was supposed to and i felt every little thing all day. of course that’s not supposed to happen per the literature, but the literature was obviously written by someone with no direct experience with the port. it still hurts right now. all deities known and unknown forbid that i decide to roll onto my side at some point tonight. the awakening will be nothing less than a scream loud and harsh enough to chase away the coyotes.