thisismydisease.com

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.

two computers died. not one, but two. the mbp officially bit it. the imac officially bit it. i’m now the proud owner of two dead macs - and a mb - which i may or may not get reimbursed for - and which cost over $1K (unlike the original of the computer with lesser specs, which cost over $3K). the lenova, at about $400 or so, i could’t get arrroved for. at all. i never even got the monitor because it was given to me *after* my furniture left raleigh and i had no room whatsoever for it in my car. so i gave it to a colleague and now, picked out my own. per me and thanks to the dead imac. i picked an hp due to the fact it’s an incredible monitor - and the fact that it’s 1/3 the price of the equivalent apple. hell i couldn’t get an apple for under $699.  or is it $599? regardless, i got a new monitor for far less money than i should have paid because i paid too much for a computer i may or may not get reimbursed for. and truth be told, i don’t want to be. i bought 3gigs of RAM - which amounts to 2gigs more than i originally had. i bought a monitor - one worth viewing my photos on and certainly not what would have been purchased for me or given to me. that one would have cost under $100 for a major-assed square box with no colour control.

in other developments, it was only herceptin this time (and next). my skin is so naturally smooth now - and my teeth don’t hurt as much (but cannibal junior is starting to look for a dentist for me as the chemo has destroyed my mouth - and i’m still not allowed to go to the dentist without getting knocked out).  my feet still hurt - but not need-an-oxycodone-every-four-hours hurt. i can get by with six. sometimes seven. besides, they’re only 5mg each, so what do i care? hell my little nephew takes a stronger dose. my hands still ache, though. no nails worth talking about. it’s going to take 4 full months for them to grow out *if* they grow out at the normal rate. anyway…

i hope the next cocktail will be different. this past one was horrible to the 85th power. now i can eat (sort of). and bake. and did i mention eat? things are still more than a bit strange - but it feels good to *almost* taste things the way they’re supposed to taste. it’ll take about a year post-chemo to get my tastes back - but this will do for now. couple this with everything else and, well, you have what you have.

oh, my brain is still really fuzzy. really, really fuzzy.

syd likes me though. he follows me around and gives me kisses. he stinks, but he gives me kisses.

i do like his kisses, even when he stinks.

ms. a took most of what my sil sent to hand out to the folks at the shelter. i really can’t eat a lot of is due to bad teeth and having different tastes by the minute. that’s fine. good, actually. people who can use it are getting it - and that’s all that matters (especially with this economy). i appreciate having someone to go out and feed those whose eating habits are bad because of that’s transpired with them. so brava to sil and ms. a.

so now it’s sleepy time. must relax. eat pumpkin pie (with or without crust - depends on a lot of things). drink my favourite drink (sans chocolate - i crave chocolate  but cannot eat it to save my gimpy soul). sleep well. and throw small soft toys at the tv. michael symon is on - and i do want to mame him. severely. good news is robert irvine is coming back to di in march.  does that mean he gets to come back to iron chef too - or do we have to endure any amount of that creaton? and if so, can we hurt him and get away with it?

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).

it’s been quite a few tiring, tiresome, annoying days. earlier today i decided not to fight it anyone, so i’ve sequestered myself on the wedge and have been reflecting, refracting and enjoying my time off my feet. nothing is so pressing that i have to walk today - so here i am watching the sun come through the trees and bad programs on the tv. not a bad way to spend some time. i should have done this earlier.

well there’s a lot to recap, but you know what? i might not tackle everything. in fact, i’m not going to tackle everything. i’ll just touch on those things that tick me off or make me smile. the rest can wait or go away. feel free to fill in any blanks your life might be missing because of this. put them in the comments section. i’ll be sure to publish them (but you know the rules, right ;-).

stand up to cancer

(1) keanu reeves: stoned, or just stupid?
(2) cheryl crow: (if i sit here and look somber someone will take me seriously…maybe).
(3) the however many actors/models who recounted stories of actual patients: why? why not just put the folks whose lives they recapped in front of the cameras? oh, yeah, they’re not beautiful - and everone knows cancer must be presented as pretty in order for people to pay attention to it.
(4) melissa etheridge: is that a wig or her real hair? if it’s a wig she got ripped off. (can you say “rat in a blender? if it’s her real hair she needs to start going to a salon with more talented hair engineers. say supercuts or fantastic sams. geez that was painful. (you know there’s something wrong when a woman who’s lost only random handfuls of hair looks better than a multi-millionnaire supported and heraleded by the second largest “disposable income” group in the us. i can see what that hair antic is going to do to the lesbian world. this is me picturing a bunch of overly-monied woman going to their ridiculously priced salons and getting “the melissa”. [shudder] thank the gods she didn’t wear j&j baby lotion pink clothes.)
(5) christina applegate: let’s give a huge shout-out for this woman. she did not get up there with the others, use her name and face and say “i’m christina applegate – and i have the brca gene (not that i even know what this is because i’m too pretty and famous for those things) so i had a double masectomy a few weeks ago. because someone told me to.” nope. she stood up there with the others and said “i am a jewish woman who has the brca gene – so i chose to have a double masectomy a few weeks ago to save my life. oh and my name is christina applegate.” her face said it all. way to go christina!
(6) lance armstrong: capitalist asswipe.
(7) brad garrett love the legs.
(8) divas of rock (or whatever the hell you go by): why?
(9) that mexican woman who stared into the camera the whole time some scientist or doctor guys were making their speal: your plastic surgeon screwed up.

well that’s it for now. there could very well be more later. presently, though, i’m going to learn how commercial tomato sauce is made. doesn’t that sound like fun?

…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.

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.

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.

It was quite the long day at the treatment center today. ‘Lots to take care of and have taken care of. Lots of time just lounging having various drugs and chemicals pumped into me. But, most of all, a really decent chunk of time to kick back, relax and take a huge nap. Which is what I did.

I arrived at the center with just enough time to have a few sips of coffee before being escorted off to the treatment room to start the “process”: Blood letting, doctor visit, treatment commencement, further doctor consultation and, finally, discharge. I prefer to get there a bit sooner than just a few minutes beforehand but, alas, there’s this thing called “work” which has to be attended to (and I’m working on some cool projects right now - so it’s fun to boot). Oh, and then there’s traffic - and the too many idiots in minivans that randomly and arbitrarily mash their brakes for no apparent reason other than to exercise their respective right feet. Welcome to Washington.

Today was a special day for many reasons.

First of all, today was the first time they used that handy power port to pull things out and pump things into me.

Let’s talk about disclosure one more time folks.

Disclosure disclosure DISCLOSURE MEDICAL PROFESSIONALS!!!!!

Nobody warned me that the numbing spray they use quite liberally was going to feel like being stabbed with 1MM stickpins simultaneously. Nobody warned me that when the needle (which is quite a large gauge) was stuck into the port it was going to force a straight-from-the-belly “Whoa Nelly” out of me - at a very high volume. And nobody warned me that it might be more than just a little disconcerting for me to watch the tech pull four vials of blood - out of a plastic tube embedded into a plastic box embedded in my freakin chest! I am, officially, a character in a horror movie.

Moving right along…

Blood letting complete, it was vitals time. They were good. ‘Nuff said.

Cannibal Junior came in for her visit and usual questions. We talked drugs. We talked chemo. We talked cancer and neuropathy. We talked my shedding skin. Being the kind junior cannibal she is she didn’t make me remove my socks - but did ask to see my hands (which were gloved).

With the requisite “eewwwwww”’s out of the way, off I went to the treatment room to start what should have been a very long (I asked that this round be pumped in slowing so as to avoid the oddities of the last treatment - and they agreed) yet relatively boring process. HA!!!!! Little Ms. Cannibal Junior pulled a fast one on me. One minute I was sitting there getting myself situation and speaking with this uber-excellent woman I met. The next minute my nurse was tugging at my socks and telling me “sorry, they have to come off”. The next next minute I was surrounded by Cannibal Junior, the pharmacist and a few nurses - all of which were just marvelling at my beautiful feet. (Oh and they didn’t even get the worst of it. I did a scraping this morning before going to sleep - so they were actually in much better shape than they could have been.) With poking and prodding undertaken and concluded - and a sidebar about carp pedicures out of the way - sample viles of new lotions and potions were provided and applied, the chemo processed was commenced, and my conversation with uber-excellent M was continued. Until the nap set in.

I got lucky today. No “helper people” to entertain. Nope.

The nap was delicious. With the chemos flowing in at a perfect rate of speed and my magazine just boring enough I drifted off into two hours of pure and comfortable sleep. I woke up happy and continued on with things (including chatting with a lovely woman I met in my intro to chemo class - now she’s got her helper person trained - he shows up with her and, promptly, proceeds to the puzzle table while she settles in to chat, to knit and rest) until it was time to go.

Treatment over, prescription refills and various food items picked up, home I went to little dog and my normalcy.

And I added a new item to the “tastes good” list: Steamed broccoli sauted in butter and roasted garlic. Insert famous tv chef’s favourite phrase here.

All in all, it was a good day.

But now it’s a new day - so off I have to go to scrape my feet, relax and sleep before the alarm screeches me awake.