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.

sorry folks but it’s been tabled for the night. i’ve got too much real work to get done - so the rest will have to wait. if you want to know how it all started out, though, go grab a large, wide needle (think sewing machine size) and plunge it very hard into your chest right above your right breast. there…that should get you going.

nighty

i restarted one of the chemos yesterday (my choice - the doc was willing to give me until the next ct scan off of everything except the herceptin). i’m definitely feeing it. i guess the one i didn’t restart (xeloda - the one that does the most damage to my body) - is the one that counteracts this one (taxol). i’ll provide the update later today. for  now, though, it’s time to crawl into my wedge, read, relax, and hope the joys of the oxycodone kick in sometime soon. if they don’t, i guess my feet will be mushrooms flambe shortly.  but before i go, another rant:

who the hell is the idiot that invented this power port thingie? cripes! this time the needle didn’t quite land exactly where it was supposed to and i felt every little thing all day. of course that’s not supposed to happen per the literature, but the literature was obviously written by someone with no direct experience with the port. it still hurts right now. all deities known and unknown forbid that i decide to roll onto my side at some point tonight. the awakening will be nothing less than a scream loud and harsh enough to chase away the coyotes.

notes for cannibal and/or cannibal junior: check.

notes for nurses: check.

grocery list for post-treatment shopping.

cheesy magazine: check.

ikea 2009 catalogue: check. (i need new coverings for my patio door - the fussy sheer curtains just aren’t doing it for me and, frankly, look out of place in an otherwise mid-century modern house.)

instruction book for vidcam that’s been sitting here for one day shy of three weeks while i hid (or should i say continued to hide) in my cave and dealt with mental stress: check. (jezuz christ on a cracker i have literally had no recovery time in a month because of this bullshit.)

extremely extraordinary book: check.

tissues to go with extremely extraordinary book: no-check. they will be pilfered from the nurses’ station.

cereal bars: check.

extra socksies (so i don’t have to walk around on ookey floors in the same socksies that actually touch my feet): small-check. they’re in the laundry basket and just need to be picked out.

hat: check.

dwight or candi: no-check. they’re still vying for position, and i’m still trying to decide which to bring along. (basha, meanwhile, is just sitting here resting up against my laptop and not wanting to do anything but that. [i moved her to a new location for less than 30 minutes, in fact, and she was so miserable she kept trying to squirm back. so i move her back. she’s happy where she is.] zola’s sleeping in the bedroom. shelly’s hiding in the closet and making her escape plans [she wants a new mummy - and i want to make her happy - but i’m having a lot of trouble finding someone that wants her and is willing to live with my rule - which is no sale, ever, no matter how much she ends up being appraised at] and the little ones are having what’s either a party or a brawl in their box - i’m too afraid to look. all the real stuffies are where they like to be and all cozy and happy. except, that is, for the cows and winkie. aw, who they were gifts for over the years, shoved them in my garage in the bottom of a box. they’ll be going for a ride in the washing machine and dryer tomorrow - then picking out where they’d like to hang out for the immediate. )

blankey for keeping warm and snuggling up with: small-check. it’s on the back of my desk chair right now. i’ll grab it on the way out.

port-appropriate shirt for bloodletting and chemo infusing: small-check. i know which shirt i’m going to wear - but have to unearth it from its drawer.

jacket to wear over teeny tiny port-appropriate shirt: small-check. it’s in the closet. i’ll put in on after the shirt.

well, isn’t that a lot of things to be toting around? i’m sure the average person would say “well, duh” - but the average person doesn’t have to spend up to five hours attached to a machine and, for the most part, sequestered to a horribly uncomfortable, vinyl-covered lounge chair. and with no wi-fi. how too old school for words. of course i hope to get in a nice fat nap while there - and if i do this will all be moot.

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.

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.

Picture me, laying almost flat on my back on an operating table with my knees folded over two tube-shaped foam rolly things.

Me: “Have you started giving me the anesthesia?”
Radiologist: “No. There’s nothing hooked up to the IV shunt at all. Why?”
Me (after turning my head to look at the shunt): “I’m feeling really really sleepy. Did the nurses give me anything before I got down here?”
Radiologist to Jory, my attending nurse: “I don’t think so?”
Jory: “No. We’ve not given you anything other than the saline we gave you back in the room.”

Fast forward about an hour.

I open my eyes and stare smack into the “camera” (aka the ultrasound machine’s lens) - which is about four inches from my nose.

Radiologist: “You’re all done.”
Me: “What?”
Radiologist: “You’re done. You did great.”
Me: “OooooKkkkkkkkkk?”

Fast forward even further, when I’m back in my room having a snack of fruit and glasses of milk, cranberry juice and diet shasta cola (stop laughing - I love the stuff, although I’m certain it strips the enamel off my teeth).

Nurse: “Wow, you’re recovering extremely quickly despite the fact they had to give you a lot of Midazolam.”
Me: “A lot?”
Nurse (showing me the paperwork): “Five units.”
Me: “Why?”
Nurse: “I guess you needed it to get comfortable and out enough for them to do the surgery.”
Me: “But I was asleep before they even gave me anything.”

This is my confused face.

If I was already feeling “out” and, in fact, asleep before they injected me with anything, why did I need so much “to get comfortable enough and out enough”? I mean, the goal here wasn’t to knock me cold. It was to relax me enough that they could proceed with the port insertion but still have me conscious enough to follow instructions and give feedback. And given the fact that when I had the biopsy I didn’t even need the Midazolam…

This doesn’t make sense.

Conscious sedation.

Early this morning when I was finally tired enough to go to sleep, I ended up sleeping for 9 straight hours. Well, I guess that’s not totally true. At some point I, apparently, went into the bathroom and took the phone with me because that’s where I found it later in the day - buried under a pile of miscellaneous things like dirty socks, a bag of make-upy things, etc. That pile of things, incidentally, was not there before I went to sleep. The socks were in the laundry basket, the bag of make-upy things was on the other side of the sink, blah blah blah.

This, too, does not make sense.

Maybe it’s the “conscious” portion of sedation they were going for - and maybe my conscious needs a booster shot occasionally.

Or maybe they shouldn’t expect someone laying flat on an operating room table to respond to commands like a puppy dog.

A feature of iv chemo, round 2 was the spreading of the neuropathy. The B6 is hardly working right now so my feet, once more, feel like I’ve walked over a pile of glass barefoot - then walked over a bed of nails. Interestingly enough, they feel better when I actually *do* walk. It’s the sitting around and not moving them that’s the most obnoxious.

On top of this, it’s moving further into my hands. At the very beginning, it was just a bit of tingling. ‘Not the case anymore. Right now the skin on my fingertips is shedding off, the palms of my hands bright red (like my feet) - and the tingling radiating up halfway up my forearms.

Annoy annoy annoy.

Now none of this would be problematic if my hands and feet weren’t cold. They are - so ice packs aren’t an option. Besides, I’m already wearing a hat, two pairs of socks, thermal pants, a sweatshirt and a blanket. If I put any more clothing items on I’m going to be walking like that Michelin tire guy. (Did I mention that although it’s July 4th I’ve got the heat on in the house? Stupid weather!!!)

Doesn’t it just figure.

Update: I’ve just applied some tea tree oil. It’s supposed to help - and my feet do feel better. I’ve also, though, just taken a motrin (must take one each night whether I feel I need it or not - I do need to) which, of course and because it’s an anti-inflammatory *and* pain reliever, will seem to help. I guess I won’t know until the next application of the oil if it’s the oil that’s helpful or the motrin.

You know, some days just suck. This is one of them. But that’s OK. Tomorrow will be better. Or not. And if not that’s OK too.

I’ve fully recovered from yesterday’s IV chemo round 2. Thankfully. I have to say it wasn’t the pleasant, happy experience round 1 was. It wasn’t bad, don’t get me wrong. It was just very different.

I arrived at the center in time to have a coffee, fill out the usual paperwork (”how have you been since your last visit” paperwork), have bloodwork done and see Cannibal Junior before heading into the treatment room. All went well with these things (very well with regard to Cannibal Junior - more on that later). But then…the treatment.

During round 1, all of the chemo, etc. was pumped in slowly (5 hours total) to make sure I didn’t have any negative reactions or drop dead from it. Since I did not, they stepped it up to “the normal time” - which is 2.5 hours. My body didn’t like that. Not one bit. Nope. Not at all.

It started out pleasant enough. The first drug - the anti-nauseas medication - went in without event. I settled into my very uncomfortable lounge chair (with broken lounge function I might add) with my book and had a little chat with Julie, the “60 but looks 35″ year old woman seated next to me. And I started to get the “the drugs are overtaking my body” sleepies - a good sign. Given my response I was optimistic the rest would be just as uneventful.

Wrong.

The nurse replaced the anti-nausea medication with my first chemo - taxotere. At the outset, things were fine. I gave into the sleepies and napped for 2o or so minutes (in an upright position, thanks to the fact the chair’s lounge function was broken). It wasn’t until I woke up that I realised something was “off”. I woke up agitated. Irritated. Nervous. Angry. Really, truly, honestly angry - to the point where I just wanted to rip the shunt out of my hand and bolt. But I didn’t do it because the best was yet to come. The taxotere decided to muck my brain up. I closed my eyes to try to fall asleep but I didn’t sleep. Instead I was fully awake and aware of my surroundings (and the “chemo patient companion” sitting on a chair across from me and talking with eveyone and anyone because his friend was out cold and he was bored) (why do these companion people insist on coming along - they do not good and, in fact, irritate those of us that are just trying to rest). But I was dreaming. It wasn’t day dreaming or lucid dreaming. I couldn’t control it, despite the fact I was awake and aware. I don’t remember the dreams. I know they were realistic and rapid in pace - but I don’t know what they were. I do know the one that was the most impactful involved AW. When I opened my eyes after that one tears fell from my eyes. It wasn’t that I was crying. It was that I opened my eyes and these tears just tumbled out. This restless, dream-filled awake state went on until the nurse switched out the taxotere with the herceptin. The second it hit my bloodstream my shunted arm started to go numb, my heart started to race - and my bronchial tubes started to close up. And my heart pound. No more dreams now, that’s for sure. Luckily, this dissipated rather quickly but left me counting the seconds until it was all over. The seconds turned into minutes and those minutes passed. I wasn’t calm enough to read or close my eyes to try to rest. Instead, I watched the bag o’drugs drip by drip go into me.

Finally, all the drips were gone and I was done.

Out I ventured to the parking lot only to realise the “normal rate drip” had messed up my brain even beyond the awake dreams. The world was bright. Really bright. Too bright, even with sunglasses. Even more bright than the “greyscale days” we had in Atlanta.

After a quick trip to the grocery to pick up my prescriptions, I ventured home and busied myself with Little Dog’s dinner, Little Dog’s walkies, email reviews and keeping things as non-bright as possible.

By 8:00 everything passed. And I was me again.

Despite all of this mental and physical weirdness, though, the session did have its moment of laughter.

Judging from the tan of the guy sitting across from me, he’s an “outside worker”. ‘Trouble is his facial hair fell out - apparently rather recently. The guy had these areas of pure white skin where his eyebrows, mustache and goatee used to be. I found this to be hysterically funny. And so did he.

He commented on my bald head.

I commented on his white patches.

All was well with the world for that time.

All in all, though, I can’t and shouldn’t complain. There are so many more people out there dealing with far worse things than I am. I do think, though, that I’ll have the next treatment slow dripped in. Even though “mental distress” is not one of the reactions the nurses care about, I think it’ll just be better for everyone if we slow things down. Gods forbid what happened yesterday happen again in three weeks - but this time I do pull the shunt out and storm out. By that time, I’ll have a permanent shunt in my chest. Pulling it out would be messy.