thisismydisease.com

August 12, 2008

News for the Curious

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.

August 5, 2008

The Goodness of the World Redux

i was so overwhelmed by what happened yesterday i posted a “thank you” on craigslist seattle. even if the guy who did the good deed doesn’t see it others will - and, maybe, be prompted to commit a random act of kindness in response.

i did receive a response - but not from the gentleman who committed the original act. i received a beautiful response from the father of a 16-year-old daughter who’s just finished chemo and radiation in connection with leukemia. thus, i received yet another random act of kindness from a complete stranger whose heart is open enough to give without condition and mandates or demands.

it’s simple things like this that evolve this world and counterweigh its evils.

note to that gentle man: thank you so much for your response and your kindness. my blessings, good vibes and prayers go out to you, your family and especially your young daughter. may only goodness fill your lives.

August 4, 2008

The Goodness of the World

please excuse this x-post from a forum i frequent. it’s important - but my energy is fading fast and i didn’t want to wait to get it in here:

i went to the local fantastic sams today to get my head shaved. i had stopped in there on saturday to see if they even provide that service and was told “yes” - so i said i’d come back when it was less crowded. anyway i went back today to have it done. the woman that took care of me was such a darling. after she finished up she insisted on washing and conditioning my scalp to get rid of the flakes (i’m flakey everywhere - kinda like pigpen from charlie brown) - then took me upfront to the till where she told me my appointment today was free. she said a gentleman that saw me in there on saturday paid for it for me. (to keep the karma chain going i paid for the woman that was seated next to me, but that’s not what i’m getting at.)

i *just* about made it to the car before i burst into tears.

for as horrible as this world may seem sometimes, there is so much goodness in people.

August 3, 2008

Pleasures…Simple and More So

(please excuse the minimal number of characters that require the shift or caps lock key to be used. the hands aren’t cooperating.

before the SHTF situation yesterday (and, yes, AW, what i’m being put through is a true, real life, more likely to happen than major disaster SHTF situation than those things you and the WOGgie Doggies muse about - think about that and act and plan accordingly - seriously - because if anything ever happens to you your parents will do the same thing to you - they’re all cut from the same cloth, after all) and when i was still feeling happy and content with life, i ran out to fred meyer to pick up some supplies (more milk - i should just get this delivered instead of having to replenish every three days) and some things on the “need to buy” list (which is comprised of those things i either can’t buy online or don’t make sense to buy online). these little trips always amuse me in so many ways because of the “human condition” variables involved. some of the “variables” i encountered during that 2-hour trip were:

(1) a twentysomething guy ripping apart the racks of u-dub branded sports gear - and pulling out tee-shirts and other lightweight items of clothing. by the time he was done he had a good 20 items in his basket;
(2) a thirtysomething mummy with two little ones in tow trying to maneuver the ridiculously sized “play cart” (a shopping cart that looks like a mini-castle, is made of plastic and offers a “play area” that’s as large as the grocery holding area) through the aisles of the clothing section - and bonking it (and, subsequently, the children) into everything - and knocking clothes off of racks and shoes off of shelves and people out of the way . i’m so sure there’s a reason why these stupid play carts exist - and i’m so sure there’s a reason why they have to be half the size of my car - and i’m so sure there’s a reason why children need to be wheeled around stores in them. the poor mum was trying so hard to control the thing and, i think, realising it was a dumb idea to try to push something that outweighed her and was 4′ wide through the teeny tiny aisles.
(3) various store employees trying to unbox and put up stock while also dealing with the “back to school sale” saturday shoppers.

I managed *not* to get my toes run over by other shoppers’ carts - which is a good thing because shopping carts + slippered, neuropathy riddled feet = sure and blinding pain.

and speaking of slippers, not only did i have to buy another pair - but i had to put them on right in the store. (i was completely out of footwear that fit - this is one bad treatment month.) i have a really stylish pair of tan mocs now. guys size 10. they’re smexy. (excuse my while i go clean up the puddle of sarcasm that just fell out of my mouth.

a few months ago i purchased a book written by a performance artist that is based on grocery lists she’s found in random places around la. she created personae to go along with these lists - and, with the help of a photographer, “made human” the shoppers she thought would be associated with the found lists. i wonder what she would do with this:

(1) file folders;
(2) gloves;
(3) slippers;
(4) jewellery box;
(5) pens;
(6) candle torch;
(7) milk;
(8) immune boost.

of the entire list, the only thing with any “fun factor” is the jewellery box i chose. it’s actually a lockable pencil box, black metal with silver metal tab corners, padded with felt and with a few mesh pockets. it works well for the intended purpose and looks cool to boot. i looks like a mini lighting case.

i also ended up with some cheapo workout camis. they’re a size medium and way too big around my 32 (c cup - just so you guys don’t think i’m built like a 10 year old) inch chest - but i can get them over the power port without them getting stuck on it and sending me into a fit of pain and a barrage of swearing. of course the purpose of spandex (which is what they’re made of) is totally lost here, but it works and provides at least a bit of support.

the most exciting purchase is the one i’m wearing now, though. it’s froggy jammie bottoms - sky blue with with antifreeze green happy smilie froggies, black-centered white daisies and black, green and white circles. they make me want to jump up and down and do the pogo. alas, that’s not a option. by jump number three i’d be attached to the ceiling by my overly-strong finger nails and not have any way of getting down.

oh and i ended up with some diabetic socks - little ped type things that are padded enough to cushion my pained feet and have no elastic in them - so no pressure on the swelling. now i’m not sure if these things would be useful at all if it weren’t for the swelling - but right now they’re just right. besides fred meyer was having a “buy two get one free” sale so they were cheap. they’re no where near as cool and fun as the katy sockies (which make me do the happy dance in my mind every time i put them on) - but they’re not meant to be. they serve a single purpose; nothing more. when all is said and done they’ll make nice dust mitts.

when i finally made it over to the dairy aisle yesterday, i ran into a crowd of people in scooters with crutches contained in the back baskets. it was surreal. picture 10+ people in scooters all zoom-zooming through the dairy section totally not caring about the rest of us and making us jump out of their respective ways. ‘a group of visitors from a rehab facility, maybe? or a hidden camera vignette for a tv show? regardless, it was curious. but they really should require the folks that drive those things to have to pass some sort of drivers safety test. or at least prove to them “this is not a toy” by showing them what could happen if they drive one of their 350+ pound (inclusive of body weight) scooters over someone. ‘not, of course, that they’d care, though. it’s been my experience that people who drive those scooters have little respect for lives other than their own. (did i ever tell you about the time when i was living in white rock and one of the seniors in a scooter chased a child down the canned goods aisle while his poor mother stood on and watched with a look of total terror on her face? i managed to grab the kid and scoop him up and out of the way just before crazy scooter senior lady ran him down. she did manage to hit him. his mum was so happy and thanked me repeatedly. crazy scooter senior lady saw me in a different aisle a while later and cursed me out. something about how children shouldn’t be allowed to be in the grocery without being in a cart seat. the boy was about 6 or so, mind you.)

now no trip to the grocery is complete without some bitching out the cashier. yesterday was no exception:

Cashier to woman in front of me: “Hello. How are you? Did you find everything alright?”
Woman in front of me: “No. Not that I ever do when I come here. There’s never anyone here to help. I don’t know why I bother.”

She went on to mutter about the store’s lack of employees for the duration of her check-out.

At this point it should be made know that, if anything, Fred Meyer has too many employees about and there to help. And not even do they answer your questions about products’ locations - they take you to them.

Le sigh.

Human condition. Who people are. What they do. Why they do it. How they do it. Two hours in an early saturday afternoon at Fred Meyer will give you so much insight. And it’s cheaper than a college-level class. Usually.

So with yesterday and the most of today done i am, once more, in the happy zone. i spent time with friends. i spent time enjoying the perfect afternoon (80 degrees and pure blue sky). i spent time in the routine that works for me. and i have new froggie jammie bottoms.

a yummy veggie and fresh mozzarella naan pizza is in the works for dinner (despite the fact naan tastes just horrible to me - if i cover it with enough sauce, veggies and mozzarella i can mask it enough to make it less annoying). a smoothie will be the late night snack. with protein powder and supplements to supplement.

pleasures.

(simple)

and smilie froggy jammie bottoms!!!

(and more so)

Untitled

Do you know how it feels when you find out the person you trusted the most in this world isn’t trustworthy? And do you know how it feels to be told someone’s need to see you outweighs your own need to deal with your disease the way you want to (and have been) and need to in order to get to the point of getting well?

That’s how I feel right now.

I’ve written hundreds of words to post here but I’m going to refrain and go back to what’s important in my life right now: Dealing with my disease, dealing with Little Dog, enjoying the weather, working on my projects (both work related and person), spending time with my friends (despite the fact a certain one of you has been telling our mother I don’t have any friends - why, because my life isn’t like yours and the word “friend” means something far different to me than it does to you), relaxing and loving this beautiful world - a world that is not yours - I live in.

When I left for the West Coast people wondered why I went “underground”. This is why.

I’m going back under now.

July 23, 2008

It’s a Texture Thing

Little dog doesn’t like carrots. Well, maybe I should clarify that: Little dog likes carrots - he just doesn’t happen to like them in their natural form.

Normally, I incorporate baby food carrots (stage 2) into his dog food mix to get a few more nutrients into him - and to give him a little treat. He’s fond of the flavour and will even go so far as to eat it off a spoon. Well, I ran out of baby food - so I threw some shredded carrots into the mix.

That didn’t work out so well.

Dorkman pulled every single shed out of the very big bowl of food and deposited them onto the floor. ‘Pretty smart for a dumb little dog - but darned annoying to clean up. He did manage to eat every piece of kibble and beef and other vegetable and oat meal, though - so I guess I should be grateful.

I can relate, though. I’m very sensitive to food textures. ‘No reason why he should be expected not to be.

It’s a texture thing.

Drippy Drippy Drippy

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.

July 22, 2008

Blog Maintenance

In a moment of stupidity I converted my categories to tags, completely forgetting that when I do that I lose reference to categories on previous posts. Now I have to go back over 125+ posts and recategorise. This is going to take some time - but I’ll get it done.

I can’t even blame this one on chemo brain - but I can blame it on the Wordpress guys :-)

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