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.

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.

i cut my nails again today. third time. only one bleeder. i should be thankful - but dayam it hurts!

my teeth are breaking and/or shifting - and as of right now, i cannot go to the dentist without some sort of decree. my mouth hurts (as it should) and is all funny.

everything tastes like salt. lotsa salt.

my nose is bleeding. my mouth is bleeding.

geico (great Web site - but even better customer service) cancelled my premium.

it takes me four times to do what an average person does, thanks to the brain cancer (which is doing well i’m told). or very weird reaction.

i miss little dog.

i go to the grocery. one day, i went to Rainier. that’s it since i got on the radiation bandwagon (which i’m off of, but i still hurt because of the chemo).

i need to get out.

but i get sleepy.

i’m off drugs. nurses don’t understand. “we don’t let anyone live with pain”. but i *WANT* to live with pain. so i will. occasional ibuprofin. it’s not like cannibal junior didn’t prescribe NSAIDS which the pharmacist had to call about!!!!

all in all, most people would want to die living the life i live.

but…

…i want to live.

…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.

went to be at the hospital. been sick. need home..

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

yesterday - another typical day in the neighbourhood: work folks shirking their responsibilities (not advertently, i don’t think - but i could be wrong) and passing them on to me, irc issues, a missing boss, a colleague riding shotgun in the cancermobile his father is driving - and holding on for all that is holy, bleeding gums, bleeding nose, sleepiness, itchy feet, itchy hands, lost boys and girls sending emails, ideas contemplated and tossed about, dwight and candy amusing me, little dog being a dork.

just a typical day.

i sucked it up and cut my nails (after doing my best to soften them so the clipper would actually clip through). it didn’t hurt as much as i anticipated it would, but it didn’t feel particularly pleasant. i’ve a feeling it was the chop-chop through the now concrete-solid fungus that caused the pain.  later today i’ll attend to what’s left.

and i made chocolate chip muffin bread. it’s yummy, although it does make my tongue hurt quite a bit. i’ll toast some for breakfast and eat it with raspberry freezer jam.

not much to say right now. nothing funny. nothing insightful. nothing that anyone would quote me for. just typical things for a typical day.

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 woke up on the wrong side of the wedge today. half of me was on it - while the other half of me was flailed out on the bed itself like a salmon trying to swim upstream and facing too strong of a current. this was the half on the wrong side - especially when the alarm proceeded to go off and, thanks to my twisty position, i couldn’t reach it. instead i was left to endure some sort of rod stewart ballad peck away at my sinuses while trying to swim my way to the off button.

minutes later, while mixing my morning coffee, little dog decided to let loose with his first pee on the floor of the day. at least me missed my feet this time.

from there the day went up and down and up and down like a stereotypical yo-yo. work was done. a trip to the post office was undertaken (and survived).  emails were sent. time with friends was spent. dinner was made (and eaten). little dog was fed (and pooped and peed - not that you’d know because he did spend quite a bit of time today peeing elsewhere, including on my feet). snacks were had. smiles and frowns were shared. words were exchanged. posts were made. and soon, very soon, the wedge will be revisited and a magazine read.

despite waking up on the wrong side of the wedge and the yo-yo of the seconds and minutes and hours - and the heat that swooped down on us (ugh - 95 is not a good temperature for the inside of the house) - the day was fine. more than fine. it was all right:

dont worry about a thing,
cause every little thing gonna be all right.
singin: dont worry about a thing,
cause every little thing gonna be all right!

rise up this mornin,
smiled with the risin sun,
three little birds
pitch by my doorstep
singin sweet songs
of melodies pure and true,
sayin, (this is my message to you-ou-ou:)

singin: dont worry bout a thing,
cause every little thing gonna be all right.
singin: dont worry (dont worry) bout a thing,
cause every little thing gonna be all right!

so if you’re sitting there feeling sorry for yourself because you don’t have this or that and can’t do this or that for whatever reason, take a few steps back. put on the funny nose glasses, dance around like a buffoon and, what the hell, shave off all your hair off. it’s alright.

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.