thisismydisease.com

…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.

another day filled with interruptions. i lost my connection to my work servers earlier (thanks to my password blowing up). it’s all fixed now - but it took a huge bite out of things.

an update - and comments to comments - are going to have to wait.

i’ve decided to be nice to myself tonight - so i’m going to crawl onto the wedge and read more than just a few pages of my book. i’m going to shoot for a few chapters, in fact. and i’m going to drink some milk. yeah. milk.

there’s lots to tell…like the latest infusion story - and the conversation i had with amber today about “talking about cancer” - and all of the usual day-to-day things that make my day-to-day just a little different.

but it will have to wait.

sorry folks - you’re going to have to entertain yourself with your own lives tonight (or better yet, crawl into the bathtub and play in some bubbles - make your own fun and don’t share). i’ll see you tomorrow.

…golfing in the rain
what a soak-soppy feeling
i’m muddy again

it’s a rainy sunday here in golf course land. the ducks are vying for greenspace with the golfers (who, once again, have had their cushmans taken away) and swimming in the ponds that are randomly forming. the geese are lining up on the other side of the green plotting their next steps. and the golfers themselves are trudging along, club bags slung over lumpy shoulders, muddied by the soil and swinging clubs at golf balls that look more like cow chips than anything else. who needs tv when this much entertainment is right in my backyard (literally)?

today is also the day of the reunion of the former students, faculty and administrators of dear old HCC. i didn’t go. i left it open when i was invited since it is such a day by day thing with me, but a big part of me is glad i chose not to make the trip. i want to see the “kids” for sure. (well, most of them, that is. i can live the rest of my “this life” without ever seeing the handful of privileged little shits whose parents should have been banned by law from breeding.) as far as the former faculty and administrators go, well, i’m sure that 99% didn’t attend. no…i chose not to go because, frankly, i’ve still got a horrible taste in my mouth over what happened to the college - and am still not convinced that its closure wasn’t an event many years in the planning. truth be told, the closure was the best thing that could have happened for the kids. they had their little worlds pulled out from under them and were forced out of the comfort of scenic everett washington and into big new worlds. because of this so many of them are now employed by companies they never ever would have applied to - and living in places they never would have considered - if still comfortable. the horrible taste is with regard to a certain few individuals who more resemble repo men (and women) than academic and business professionals. either that or the ones in question truly are and were dunces.

so with the weekend just about over it’s time to think about the work week (in case some of you are unaware yes, i am employed and working). what needs to definitely get done. what need to possibly get done. what needs immediate attention. what just needs attention. what the chances of my colleagues occasionally paying attention to me are.

on the cancer front, i have to drop by cannibal’s office and pick up a prescription for oxycodone, take it to the pharmacy - then either wait around for it to get filled (while standing on the very reason i’ve got the prescription) or drive home and come back minutes or hours later. now doesn’t that sound like fun?

(don’t you find it curious that in this cancer blog i spend most of my time bitching about a rare side effect of one of the chemos instead of bitching about the cancer itself? hmmm…maybe that should give you a clue.)

during the time i’ve been writing this post i managed to consume a quart of potato cheddar (but no broccoli because i’m all out) chowder. that, most likely, wasn’t a good thing - but it certainly was tasty (wonder of wonders). so what’s a little lead feeling in the belly anyway?

little dog is snoozing off his dinner. the night is new and prime for relaxation, reading and a bubble bath. all is well with the moment.  here’s to its staying that way. and here’s hope your night is as good as mine.

in an attempt to keep the skin on my arms, legs and belly from flaking and drifting off as i walk - and to attempt to get me into weather-appropriate clothes again, the bath routine has changed (thanks to jori and crew). it now not only includes vanilla lavender bubble bath, but also a few drops of patchouli oil. oh and a liberal dose of neutrogena body oil. add to all of this the pomegranate acai soap and, well, i smell “unique”. it’s not bad. it’s very layered - and colourful. since my fingers are so dry i can’t tell if the first application of the layers worked - but my skin looks smoother. well maybe not really - but it is the first application after all. what can you expect from the first treatment?

meanwhile (and we’ll insert the high eeeeeewwwwwwww alert here just for nan)…

…the skin that’s sloffing off my feet is all kinds of fun colours: black, brown, pale yellow speckled with brown, dark yellow. and it’s crunchy. it’s kind of hard to describe. if this weren’t my skin i’d be totally eeeeewwwwwww’d out. but it is. so i can’t be. well i guess i could be - but that wouldn’t be very useful.

so now that i’m all cleany and smelling like the perfume department in a traditional pharmacy staffed by little prim ladies dressed in navy blue dresses and sensible shoes - and now that my little bald head is flake- free and a cute as a baby’s bottom - i’m going to go wedge into the wedge, read, lean more about the video camera and drift off to sleep. i deserve it.

oh and maybe i’ll oil my feet some more. the sheets need to be washed anyway.

and maybe i’ll take another stab at the hands. not literally - but if i did i wouldn’t feel it anyway. at least i should pull out some of the fungus so that the floppy dog’s ear smell doesn’t come back too quickly (sorry nan).

nightly all!

today was one of those days when a lot of little things happened. nothing important happened, but when you put them all together they made up my day. and it was a good day. normal, but good.
early morning brought my corporate email migration to a new system. in the real corporation this would have been completely seamless and a non-event. but because i work with a bunch that take “diy” a bit too far many times, it was a whole magilla. three hours into what should have taken five minutes i was halfway done - so i made the necessary announcements and aborted the mission. it’ll get done on monday. or not. it’s not that big of a deal (despite what the engineer boys think).

the rest of the day brought more work (nothing at all exciting, though - or even partially interesting), the bubbly bath, the trip to cannibal’s office to pick up the scrip (and chat with ina, his patient liaison and one excellent person) - and the overly lengthy wait in line at the pharmacy. it also brought a footbath.

skin scraping is disgusting but, unfortunately, necessary. a few weeks ago everyone was talking about fishie pedicures which, in a very real way, make sense. i don’t have access to said fishies, though - and even if i did i wouldn’t use them because i’d kill them, and there’s no reason for fishies to martyr themselves for the sake of my skin. so i did the next best thing - bought a footbath.

the footbath was supposed to have arrived here yesterday, but due to the fact ups has summer fill-ins who apparently can’t read street signs (or even know which city they’re in) it was delayed a day (and arrived opened and resealed - but that’s another story). at least it got on the regular route truck today.

so the footbath is here complete with warmer, massage feature, bubble feature, and variously reiki attachments - and all for $20 (gotta love amazon). i’ll give it a shot tomorrow. today’s too done for the time investment. or the mess that’s sure to ensue.

(great…yet another thing for little dog to use as a water bowl. what was i thinking?)

and the first design for the charms is done! i love it love it love it!!!!! but you’re not going to get to see it until it arrives here (along with the first of the second charms). so don’t ask or you’ll be berated for overstepping bounds. nah!

it was a good day.

but now, with the day almost done, it’s time for my midnight snack, a final nighttime visit to those blogs i read daily, a few emails - and then bed.

as children we take baths to get cleany (because lordy knows if left to shower alone we’re down like roosters looking up at the falling rain). fill the tub with cheapo suds, get on in, splash around and get cleany. as adults, though, showers are the order of the day and baths are saved for “calgon moments” (of which there are so few it seems).

why?

during one of my chemo + oxycodone moments i decided i was going to challenge this adult north american “rule”. so i did. today.

i started the bath and added the requisite bubbles. i failed, though, to check to make sure the drain was functioning properly (which it was not the last time i used the tub). it was not - so all the bubbles went away even more quickly than they formed. but that’s beside the point. i fixed the drain, drew another bath and added the requisite bubbles. and then i got in and, just like i did as a child, splashed around and got cleany. quickly. much more quickly than in the shower - and much more thoroughly as well. the whole episode, inclusive of the failed first tub, a light scraping of my hands and feet and the sluffing off of the rest of the chemo-caused flakes, took less than 30 minutes. and instead of feeling the need to nap to recover (as with a shower - which is much like a game of the out of vogue dance dance revolution) i felt great. great enough to go to cannibal’s office to get the written ’scrip for the oxycodone, chat with ina and the woman who greets those in for radiation - then head off to the qfc to veggie shop and pick up said scrip for oxycodone (which, on a friday afternoon, is much like waiting in line for the release for the “next big thing”, or the bank).

so from here on in and until further notice it’s baths for me. i just have to get something to wash all the dead skin out of the tub with (i’m thinking one of those bathtub-to-shower hose thingies should do the trick) - and something to keep little dog from using my tub o’suds as his water bowl. (remember - he’s the one that drinks from the toilet, flushed or not and not caring of what’s in there. he’s a dork.)

i bought a cheapo bottle ($4/litre) of bubbles to mark the decision. i have to keep the day-to-day separate from the “calgon moments”, after all. the cheap stuff is for getting cleany baths. the good stuff is for the rest. but the army of fishies and the bagpipe-playing duckie is for both.

my new assistant (a much more appropriate name than cleaning/cooking helper), amber, started today. she arrived at 10:00 and proceeded to clean this place even better than the folks my landlady hired to do the move-in clean. the floors are spotless. the knicknacky things are dust-free. the kitchen counters are uncluttered and crumb-free. and the floors are…

…slick.

for me this isn’t a problem. i tend to drag my feet around most of the time anyway so it’s actually helpful. it’s a problem, though, for little dog.

little dog has been slip ‘n sliding all over the place. he’s done a few that have gotten him a number of feet across the hardwood. he’s smacked into a few walls, though. thwunk. at one point he landed flat in the kitchen and decided getting up was too much effort - so he slid himself around on his belly. it was comical to watch - and he seemed to enjoy it. right now the stress of a new person coming into our lives coupled with the usual stress associated with little dog himself has him snoring next to my desk.

he’s so cute.

it’s his only saving grace.

amber will be back in two weeks to clean again - and cook yummies for me to keep in the freezer. first go ’round will be potstickers and sauces for steamed veggies. that way, on those days when i don’t feel like cooking, i won’t have to resort to stouffers (or worse).

this is cool.