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.

why?

while perusing the “crazy sexy cancer tips” book today (and it’s truly one of those “open a page and read it” books, not a “read cover to cover” book), i happened upon a section about the “cancer card” (which i really should start using). here’s what it says:

“faux pas!

“beware of cancer card theft! situations might arise where others may try to use your cancer card on you. i had one friend who used to guilt me into calling her back by leaving really pushy and inappropriate messages on my machine. ‘i’ve called several times, you’re really starting to worry me. are you ok? if you don’t call me back you’ll know what i’ll think. please be considerate and call.’ give me a break! if i were dead you’d be the first person i’d tell.”

*giggle*

and so true.

so now for all you folks that claim you know me but don’t have the foggiest clue: i’m fine. stop calling me to find out if i’m fine - or i’m sleeping. i would be sleeping if you would stop calling me - and every minute i spend not sleeping when i’m trying to makes me feel less fine. i’ll get back to you when i’m rested and this bloody project is done or my teammates have been properly beaten up with tire irons, which ever comes first.

that’s the number of hours i worked yesterday, despite the fact some a-hole mba-type director dickweed made the comment that because i don’t capitalise i don’t pay attention to detail. can a-hole mba-type director dickweed say “lawsuit”? (probably not - i don’t think they teach words with that many syllables in the south until one gets to phd-level studies.) anyway…

i like the project, but have to admit i’m getting more than ticked off with being given all the crap work nobody else wants to do. in the 19 months i’ve been with the company i’ve gotten to work on only one good project - and although it was approved, verbally, to move forward the boss has put it on the back burner so he can deal with all the junk these mba-types spit everywhere. oh well, if they’re comfortable violating the company’s mission and not being innovate good for them. meanwhile…

i’m going to enjoy the night tonight. i put in ten additional hours on the project today - so i’m going to take some me time, enjoy a few hours doing what i want to do, not bother to set the alarm for  the morning and have a drink or two. i’m having the first right now in fact. needs ice. other than that…

my landlady chose today to have the shed door broken down and replaced. today. almost a year after i moved in here. and a day i had phone meetings that required my full concentration. it’s hard to concentrate when some tools-yielding carpenter guy is pounding the crap out of a door. (i guess he didn’t think to just break the lock with a sledge hammer - then remove the door. whatever.) he brought with him a very nice german shepherd doggie though. i got to see him while he was pooping in my yard and sniffing at my patio door. we don’t talk about what he did to my garbage. other than that…

amber showed up for her bi-weekly visit. the yard folks didn’t show up for their appointment to pull out scrub trees, trim the bushes, etc. little dog is still little dog. and i’m still me.

so off i go to enjoy the 15 minutes left of the day. i might just get all wild and take some minutes from tomorrow and enjoy those as well. there’s no way the a-hole mba-type director dickweeds will be able to figure that one out.

it’s been a week. an (in)sane week. a hectic week.

but now it’s an over week.

due to a number of happenings at work this week, we’re not quite sure where a number of our teammated ended up. we know they weren’t gotten gone, but we’re not sure where they ended up. maybe we should put their pictures on milk cartons and enlist the help of the general public in finding them.

yesterday evening was an evening of firsts. it was the first time i met a fellow west coast remote colleague. it was, in fact, the first time i met with any colleagues since living raleigh almost a year ago. and it was the first time i went out with fully drawn on eyebrows. it was success all alround - even with the eyebrows (which i was sure i was going to smear off or somehow destroy). oh and the food was good, too.

i came home last night to find little dog on his back, crying, hyperventilating and with the baby gate stuck in his mouth. i don’t know what happened. i don’t think i even want to know how this happened. with shirley’s help little dog was able to free himself. after more than a quart of water and some cookies he was fine. fine like it never happened fine. more than 24 hours later, though, i’m still a total wreck. one minute i’m fine. the next minute i’m sobbing helplessly. the water cleaned up all the blood and helped him recover. the water isn’t doing the same for me.

today was spent visiting michaels to pick up some props for my holiday photo shoot. in case anyone cares it’s even too early to get quality c-mas items at michaels. oh, i did get an 18″ burlap wrapped tree for $4. that was nice. i chose to offset this bargain by paying full price for alton brown’s “feasting on asphalt”. please take my debit card away from me.

a short while later, somewhere in between the non-existent tofu and non-existent tubes of herbs and 3 for $10 organic milk at the qfc i realised it’s saturday night and i have nothing to do. this was the first time this realisation has come over me in 6 months. i must either be getting better or am so totally bored with myself and everything i just want to escape. i wish wall-e was out on dvd. i would have liked to watch that tonight.

but now tonight is to the point where i’m just going to lay back, read, relax and watch the moonlight shine in the window. and check on little dog - maybe give him a special snack and some extra kisses, although he still doesn’t like it when i kiss him. the single chemo is better than the cocktail, but i guess i still smell badly to him.

oh speaking of smelling, i’d share with you an email i got from someone - my certified and center sanctioned healing touch therapist - about what little dog thinks, thinks about me and thinks i should do. she found this out by whispering to him - and he whispered back. but i won’t. i’ll wait to tell you until the surprise i’ve got in store for her comes to fruition. stay tuned.

well it’s that time - time to give in to the chemo sleepies and ride the ebb and flow of the night.

so good night.

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?

today should have been busy, but relatively painless. i was to report at providence st. peter’s hospital in lacey at 12:45 pm for a 1:00 pm ct scan. well i did arrive on time - but then had to trek 7 minutes to get from the parking lot to the facility. (valet parking might be nice, considering how much we pay you folks - and especially most of us can’t walk very well.) regardless i arrived and took a seat in the waiting area. around 1:00 pm i was called back to meet with one of the coordinators. why you ask? because they had no record of my appointment, despite the fact my  “how to prepare for the ct scan” memo was p/st. p branded - and i received a confirmation call from the providence scheduling department on friday. net-net and without going through 15 minutes and 10 phonecalls by the coordinator i was in the wrong facility. i should have been at western washington oncology.

they were “kind” enough to let me come right over despite the fact the mistake was theirs.

idiots.

by the time i wound my way through traffic and arrived at wwo i was so pissed off and my feet so swollen. i was foul. did it stop there? oh no…they completely forgot about the other appointment - to have my port looked at to see how it’s doing - and they didn’t know if they could fit that in since i missed the appointment i didn’t even know about.

you don’t need to know what transpired next. i’m sure you can picture it in your mind.

net-net: i got the port review, the ct scan *and* my doc’s email address so that i can actually contact the office and not go through the usual vm crap which only ever turns out badly anyway - and so i can tell put it in writing that i WILL NOT take antidepressants for the neuropathy - give me something to fix it, not make me sleep through it.

cannibal is on my hit list this week. why do i pay $350 for a 15-minute doctor’s visit every three weeks when i haven’t seen him since the first week of june? surely, cannibal junior doesn’t garner that rate. and why in the hell doesn’t he listen to what cannibal junior is telling him about the state of my feet and hands? i’ve seen the notes she’s written. does he not know how to read?

yeah. i’m in a foul mood.

the port review went just as i thought it would (after i pried myself out of the non-review appropriate shirt i wore since i didn’t know i about the stupid appointment). if you recall, i mentioned that they place the port in such a position that it doesn’t interfere with bra straps. that’s true. it doesn’t. but what they don’t do is place the port in a position that’s appropriate for one’s body type and bmi. so now i have a skin covered box with two purple entry/exit spots right where my bra cup would lay if i could even wear one. nice one guys. would you like to pay for the sports camis i’ve had to buy to accommodate? oh and because i’m so athletically built the damned thing sticks out through my shirts and is more than a little obvious. anyway, i’ve been complaining about this and being told “it will be fine when the swelling goes down don’t you worry”. well the swelling is down and it looks like crap - and today’s reviewer confirmed that. nice that med professionals need other med professionals for all confirmations. whatever.

the ct scan was its usual non-event. breathe in, hold it, breath out, repeat five or so times, done. five minutes start to finish.

so the appointment that should have been done by 1:15 finally finished up at 3:15. it was only then that i got to go to fm to lay in the supplies for the next two weeks that i can’t get at the stores that are only within a mile of my house (just in case i can’t get there or don’t want to make the effort to get there). yeah, i was supposed to do that earlier during my recovery week but due to way too much drama to deal with that didn’t happen. neither did enough recovery. so i’m starting the next cycle with little let-up on the pain, no let-up on the skin issues on my feet and hands, and no let-up on the full-body flaking skin.

don’t worry. i won’t post pictures.

or maybe i will

my my my. the upcoming week is going to be a busy one! my calendar is completely full from early tomorrow morning until late friday afternoon. meetings mostly - but a ct scan, a chemo infusion and a cannibal visit thrown in for good measure.

if i don’t blog a lot this week please forgive. there are other things that need to get done as well. i’ll try to update at a decent rate of speed but, please, if my updates aren’t quick enough for you do not phone me at 5:00 in the morning to “check in”. if i’m awake at that time (which i usually am) i’m working and will ignore you. and if i’m asleep and you wake me up you’ll suffer a wrath unlike any other.

for those of you that know i’ve got a doctor’s appointment this week: don’t expect “news”. it’s not like that. i’m not lying to you and/or keeping anything from you. it’s just that “news” is subjective and based on my body, not anyone’s impatience. all in good time.

oh and for those of you that don’t know i’ve got a doctor’s appointment this week: i have a doctor’s appointment this week. see above.

the painkillers have worn off again - so my flattening and swollen and shedding feet feel like those nasty aliens are conducting an conscious autopsy on them. but that’s the least of it.

my. hands. ITCH!!!!!!! oh holy mother of god this is ridiculous. i scratch and flake and scratch and flake etc etc ad naseam but nothing changes except the level of pain and the amount of flakes. to hell with this i say! later today i’m going out to home depot to get one of these.

yeah i know…cannibal said i can’t use sandpaper on my skin due to the risk of cuts and infection. but mr. “medicate the symptoms” hasn’t been successful in coming up with a way to make this even remotely tolerable - so let his advice be damned. a little sanding followed by a bubbly handbath/footbath…what could possibly make things worse than they are?

yeah, i guess i could sand off too much skin and leave myself walking around leaving bloody handprints and footprints behind.

yeah, i guess i could rub that little finishing doohickie too hard on the skin between my toes and fingers and end up with brush burns that can’t heal properly due to the naturally sweaty environment.

yeah, i could drop the thing on the floor and have it run away and destroy the hardwoods, attack the dog and break the patio door.

and yeah, conceivable with chemo brain, i could drop it in the footbath and electrocute myself (because, of course, i’ll use it on myself right next to the fully bubbly footbath to keep the mess confined).

but hey, success doesn’t come without risk-taking.

time to take some risks.

i’m donning my battle gear. get out of my way.

The bozos at JoomlaAmerica did it again. They pulled my servers down - or the servers broke - or they got hit with yet *another* denial of service attack. This time it was down for 4+ hours - after being down earlier today. I guess their 99.9% uptime guarantee is nothing but words written on their Web site because I sure as hell don’t have 99.9% uptime on my sites. (For the month of August THUS FAR I’ve only got 92% uptime.) I’ll bet the engineer guys didn’t even read those words - or don’t what what guarantee means - or know how to do arithmetic.

I chose JoomlaAmerica because an acquaintance of mine runs the business side of things for them and, on paper, they look really good. I harbour no animosity toward her at all. She’s here in Washington and does what she does better than well. The engineer boys, though, they’re another story.

I’m pissed. And I’m noticing it (more on that in another post). So JoomlaAmerica: You official suck. And since this is being picked up by Google and Technorati, etc., the world will soon know.