thisismydisease.com

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).

snoopy has developed a vulnerability.

he’s not fetching properly.

he’s confused.

out of sorts.

i think he needs pettsers and kisses.

and a kiss on his nosey.

then he won’t be out of sorts anymore.

sorry folks but it’s been tabled for the night. i’ve got too much real work to get done - so the rest will have to wait. if you want to know how it all started out, though, go grab a large, wide needle (think sewing machine size) and plunge it very hard into your chest right above your right breast. there…that should get you going.

nighty

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.

so let’s not talk about me. let’s talk about this lovely woman (who just happens to be a friend of mine).

candace’s youngest son broke himself just over a week ago simply by doing his job: being an active little 5 year old kid.  the “broke” is a spiral fracture which, until yesterday, was splinted. it’s now in a cast - a rather large and day-glo one. and the wheelchair provided isn’t one of those cool ultra-lights. oh no…it’d be way too hard to hand over something so “right sized”. no, instead he was given one of those uber-bulky ones that may be easy enough to lift once or twice - but is not something that can be lofted about easily and, certainly, not lofted about at all by someone so young and short.

so in thinking about candace’s young son and what they’re going through (and of course this all happened while her dear husband is away on his summer duty with the guard), and in thinking about all the poop i’m going through with my accordion feet it’s time to segue to a segway.

think about it: i don’t need to be sitting down - and candace’s young son could simply rest his little butt on the tow bar type bars you can attach to them. a segway makes mobility sense in our cases. and because they’re pushable and climbable and don’t need to be lifted here there and everywhere even people with less than superhero strength or the height challenged can maneuver them about.

‘course in my case it would just make things easier to bonk into and cause more damage to.

‘course in candace’s son’s case it would mean his brothers could (in) advertently become roadkill.

on paper this all makes sense though.

the segway is an intelligent ingenious invention. it’s capable of so much more than providing transportation to the lazy or helping cops and troops get from point a to point b quickly. it’s a potentially viable method of mobility for those of us that really don’t need to be sitting to get about but are not (always) capable of getting about without assistance.

someone should get one and turn it over for audience testing. i’m sure candace’s young son would be up for the challenge (and we could get the other three out of any potential harm’s way or, at least, outfit them with crash helmuts). i know i am. i could pad up the walls to reduce potential damages. but i can’t make any promises i won’t use little dog as a target. (you know i’m joking, right ;-))

because of what i do for a living, i’m always looking at things from a usability perspective. here’s today’s find:

the qfc (owned and operated by kroger) just installed a computerised prescription system that requires the purchaser to answer questions before the prescription will be handed over. without drawing a picture here’s what the interface looks like:

two statements, each with check boxes next to them (one says “i accept education from the pharmacist”, the other says “i decline education from the pharmacist about my prescription).

below these two statements are two buttons - one that says “continue” and one that says “start over” - and neither one of which does anything.

a line for one’s signature.

two more buttons - one that says “accept” and one that says “decline”. “accept” takes you to the “swipe card” screen (and makes the assumption you’re paying with a card). “decline” does nothing.

now i’m a completely computer literate, english speaking person and i just looked at this thing in total awe of its ridiculouness. the person responsible for this lack of intuitive design should be forced to help every customer of the system (and there are millions i’m sure - this is not a custom app) try to achieve their goals. and should, after that’d done, be fired and sued for the inability to do their job.

michelle, the pharmacist, placed little pieces of stickies next to the action points in an attempt to help people maneuver their way through - but has to supplement with personal instruction because there’s only so much that can be written on a little piece of stickies.

“we can’t even explain what the buttons mean they just don’t make sense to anyone.”

this should not have to happen.

that lack of sense-making does nothing but create more work for already overworked employees - and piss off customers who, because of being at the pharmacy for a reason and not just to say “hi”, really don’t need to have the extra stress thrust in front of them.

+100 to kroger for creating yet more work for its employees and pissing its customers off further. ‘looking forward to seeing how your brilliance comes into play during the next earnings announcement.

first things first. i am not keeping anything from anyone. this is not the average cancer we’re dealing with here - so, please, if i say i don’t know it means i don’t know. it’s not that simple and as i find out you’ll find out. it’s not susan koman type cancer. not everything is tied to a brand name hawked by oprah and cnn and pushed by every other brand to try to make a profit through the promise of a (minuscule) donation. anyway…

i had my iv infusion today (as i do every third tuesday) and got some news. since i prefer to go “bad to good” that’s what i’ll do.

bad news:

i am not in remission.

i am on the road to being well - but not quite there yet.

good news:

my latest ct scan looks so incredibly good it made me cry. the cancer is still there - but it’s so much less than it was back in may when i had the first ct scan. the spots and lymph node swellings are about a tenth of what they were three months ago.

my doc gave me a break until september - so he only had me infused with herceptin today. in september we’ll determine which of the other two we’ll add back to the mix. this will give me time to get the neuropathy on the road to healing before we aggravate it again.

he’s all for my trying to bubble the skin off with a footbath. now i’ve just got to get it set up under my ottoman (which is under my desk) so i can bubble and work simultaneously. he’s hopeful that if i can get the dead skin completely off and keep it off it will let the nerves start to heal and maybe even aid the swelling in going down.

and he’s mandated that i keep the routine i’ve established for myself up. it’s working - and now is not the time to disturb it. this is going to offend some people in my life - but it is my life and i have to live it in a manner that works for me.

i could, very well, be on chemo of some sort for the rest of my life - but that’s ok. at least the past 9 weeks of my life have shown i can get well. so here’s to my getting well.

thank you all for your love, support, good vibes and prayers. it means so much more than i can express.

i owe a few of you a personal email. it’ll be on its way shortly.

well that stupidly expensive keyboard that’s just out of warranty is officially dead. i did everything possible to resurrect it to no avail. now i have a $60+ dollar wad of aluminum, circuity and plastic to pay even more money to have recycled. yes, it’s tax deductible - but that’s not the point. the point is everything apple has produced in the past year + seems to have pathetic quality. it’s pretty - but the quality control and, thus, the quality has gone downhill steeply.

because i can’t use the old keyboard i lent to aw and he gave back to me very well, i’ve had to buy another keyboard. i got this one. it’ll be here on wednesday. since tomorrow is drippy drippy chemo drippy day a wednesday arrival isn’t horrible. i have three laptops to fall back on. ok two. one is an apple and despite being in the repair shoppe twice it’s still hosed unless i attach peripherals onto it. that sort of defeats the purpose.

gucking apple. my next mac’s gonna be a clone.

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.