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.

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.

earlier today, while sitting here doing what i do when i sit here (working, for those of you who think you can call during business hours because i work from home and, therefore, don’t really work) and something plowed into the sliding door. since my yard backs onto a golf course i really didn’t think much of it. i figured it was some guy’s runaway (nice way of saying “aimed improperly”) golf ball - so i ignored it. it happened again about 10 minutes later. and again sometime later. each time i ignored it because, well, i was working and really don’t care as long as nothing gets broken.

but then it started at the kitchen window.

for some reason, something bonking at the sliding door doesn’t annoy me too terribly. maybe it’s because it’s in front of me. i don’t know. but something bonking at a window behind me annoys the crap out of me and convinces me little dog is going to go ballistic (which, of course, he cannot because he’s mostly blind and mostly deaf).

so up i got and went to investigate.

in what’s left of the window box i found a cat - a cat bonking his head against the glass and clawing at the miniscule screen with his claws.

pork.

i mean cork.

i mean the puppy-cat that used to be a kitten but took some growth pills and went from being a cute little thing to being one big ‘ole creature in what seems like a matter of days but is, more likely, a matter of months.

my friend.

one of only a handful of cats i happen to actually like instead of tolerate at best.

so cork and i played at the window for a few minutes - and little dog put his head up to try to figure out why mummy was making strange gestures and the like.

so i turned around to see little dog.

and cork zoomed away.

dayam he’s still fast! the additional length, height and weight certainly hasn’t changed that.

i’ll be gone all day tomorrow - but i do hope cork stops by again, if only to look in on little dog. they don’t get to see each other in person very often - and good friends are hard to come by. especially the fuzzy ones.

as for me, i was very glad to see him - but even more glad to have seen him through a wall of glass. his favourite game is “trip the human”. his second favourite game is “trip the doggie”.  neither one of us is very fond of falling down. or very graceful.

little hayden james (the ex-husband’s son) made his way into the world yesterday, 2 weeks early and seemingly very happy. he is one big baby! and smilie. and a cutie patootie. so congrats and best to the entire family! i’m off to look for teeny hockey skates and a goalie mask. (you don’t have to be practical when babies are involved - especially when there are already a bunch of boys in the extended family.)

i’m sorry i’ve been so non-responsive to comments, emails and the like. beside the chemo, i’m dealing with a major pita project (code name = “romper room” because all of the participants run with scissors, need a time-out - and seem to thrive on “juice and cookies” [code name for margs and tapas]). this was all scheduled to be done over a week ago. if luck holds, it’ll actually be done on the 13th. my patience, however, is well past done.

this latest chemo cocktail is a major annoyance. despite being taken off the one component that causes all the scary effects, the new cocktail is seemingly worse. this one is weak enough that i actually “feel” every little thing. i don’t get the very strong reactions i got with the one that contained xeloda - but i feel every reaction, no matter how small. and this one makes me feel worn out at all times *except* at night (when i am nice and perky - figure that one out) - or when i pop an oxycodone (which is such a weak strength they give stronger to little kids - but i’m so not used to drugs even in its weak strength it’s enough to get me going).

so, yeah, that’s it. nothing really new - but lots of new anyway. i just wanted to make sure nobody feels slighted because i surely don’t mean that.

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 barrel of monkeys here in the cancer den, let me tell you. if there was any more excitement around here i’d burst my seams and spew my toxic innards all over the floor. let’s see…

what’s happened…

ummm…

ummm…

ummm…

nothing.

not a bloody damned interesting thing.

it’s been quiet.

very, very quiet.

my isp finally agreed to let me send emails again (after multiple days of my begging and pleading and crying), despite what my web hosting company enabled (idiots).

work has been hectic, but quietly so. it’s the end of the summer and vacation time, after all.

i got my office almost completely rearranged and re-outfitted. just a few more things to go (like a whiteboard) and i’ll be able to call it good.

amber came by and cooked up a number of weeks’ worth of potstickers and sauces for veggies, rice and pasta.

the blog got picked up some place or other and is getting spammed to the tune of up to 20 per hour (which isn’t a lot - unless you consider i have to moderate each comment).

little dog, once again, proved he’s skilled above and beyond normal males and peed in the cupholder in my car (and i have to say, his aim is much better than any human male i know - he didn’t dribble so much as one drip, which is more than i can say about any of them).

the fungus under my finger nails has gone from being oozy and squishy to being solid and crunchy. it still smells like floppy eared dog ear, though.

dwight’s girlfriend arrived. she was prenamed “peanut” but she keeps telling me to call her “candy”. she also keeps mentioning that she’d like some friends - and keeps leaving me hints here and there.

the subtraction of two of the chemos left me with hands that are far less scaly and flaky - but are even more extremely sensitive to heat, cold, and (even) touch. they itch like hell and hurt even worse. and my fingernails are curving under - which wouldn’t be problematic if i could cut or trim the darned things. no can do. for things that have no pain receptors in them they surely do hurt when i try. if the emory board i purchased doesn’t work on them (and it might not, given how bloody strong they are) i might have to resort to sand paper.

thanks to facebook and the wonderful ms. stephanie green i “met” jessica queller, the author of this book. it arrived yesteday. i’ve got a date with it later this evening after a smoothie-based dinner and whatever else i can scare up that’s appealing. (i made a pot of homemade potato broccoli cheddar soup but i’m not in the mood for it now.)

my sil sent me a care package full of foods that don’t taste terrible to me (the lollipops, in fact, taste pretty good) and a book that was actually on my amazon wish list. i think she’s the first person to ever purchase anything from my wish list. (well, except for aw - but he purchased a book for me that i put on the list to purchase for him. like he couldn’t tell the difference.)

i made the mistake of putting some of the leftover (from many months ago) kraft singles on a bagel and putting it into the oven to bake. wow - i’d forgotten just how horrific that ends up. even little dog was confused by it. there something very wrong with a cheeze-food that does not melt but does bubble up and get brown and crusty.

one particularly rainy day this past week the golf course banned the cushmans (or is it cushmen - i know i keep asking but i don’t know the answer) from the grounds. surprisingly enough a good number of golfers came out despite this “inconvenience” and trudged through the rain and mud to play. now if they would only eschew the cushmans on other days and stop making nuisances of themselves. (i found another golf ball in the front yard the other day. that takes talent. or total lack thereof. it’s hard to say.)

a coyote walked past the living room window.

little dog peed on the floor. and my feet.

it was rainy and cold.

it was sunny and warm.

i slept.

i ate.

i hung out with friends.

i read.

i cried.

i laughed.

i just was.

just the way i like it.

it’s been quiet.

very, very quiet.

and now i’m going to sleep some more.

i got an email from my ex today. he’s going to be a biological daddy!!! (his girlfriend has three from her first marriage - so this is their first together.) best wishes and best health to all - and hopes that this lovely woman has as easy a pregnancy as possible. and let’s all join hands and pray to every deity known and unknown they end up with a little hockey player.

because of today’s event dwight didn’t get to go through a chemo cycle. i think he’s relieved. he’s not staring at me in a demented manner right now. in fact i think he’s smiling.

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.