thisismydisease.com

I’ve been sleeping on the wedge thingie for a number of nights now. For the most part and although I do miss flopping directly into the cushy comfort of the memory foam mattress pad, I have to admit I find this to be quite agreeable.

Getting into the wedge requires a bit of flexibility most average people don’t have, let alone someone with cancer travelling about the body. After multiple contortions and a few back and forth rocking maneuvers I do, though, end my butt up in the proper place. Then it’s just a matter of the brain coordinating the backward movement and the forward movement necessary to fit into the “womb”. Once I’m in there, though, with Zachy laying on my tummy and cuddling the body pillow on the left I’m all set for a good and dead-sleep night.

Now people have asked if this wedge thing can accommodate side sleeping. Well it can - with a little body engineering. I’ve taken the liberty of providing a informational graphic (below) (and no comment about my poor graphics creation abilities):

Of course the normal position is self explanatory. The side position requires a bit of imagination.

Picture yourself laying on your right side with thighs up the second wedge and knees and calves outstretched to the left and behind. It’s actually pretty comfortable provided you don’t have to move to, say turn off the alarm clock. Gods help you if that happens. You’d better be able to muster up enough momentum to quickly rock your way toward the clock - or find the energy necessary to roll back onto your back, swing your back to the left while, simultaneously, swinging your legs toward the right. No matter how you look at, you’re going to wake up nasty and spend the next few hour thinking of violent ways to destroy the clock.

So there you have it.

The wedge is calling my name right now - so I’m better calorie up so that I can have the energy needed to assume the position. Should I have another smoothie - or should I have I just go for protein powder and supplements with juice? Ah…decisions.

The eyebrows are falling out. For sure. ‘Not another sleepwalky night doing lordy knows what in the bathroom. Not just my eyes playing tricks on me. They’re definitely coming out. And leaving these lovely red marks on my skin (to add insult to the injury).

So I bought these.

Jori, my “hair engineer”, is going to have a nightmare trying to teach me how to use these things. If you’re praying sorts you might want to get her included now. She’s going to need it.

…and although the memory of yesterday night still exists, I’m feeling almost like myself now. I’m not going to go into detail - not because I want to keep anything from you dear friends - but because I don’t want to relive it again in any way, shape or form. And it’s all about me, after all. (For those of you who really want to find out what happened send me an email. I’ll be more than happy to provide you with a step-by-step outline on how you, yes you, can come within minutes of having to go to the ER for emergency surgery.) I will share a few things:

(1) Diet is important - and when you find something that works and your doctor says it works stick with it. Don’t listen to the “you have to try this” and “you have to try that” crap (especially when it comes to vegetables and grains and the like) that gets forced upon recommended to you by well-wisher. Instead, tell the well wishers to try it out themselves and report back (in this case that would most likely be after they’ve returned from the ER and that emergency surgery).
(2) The door of the dryer does not make a comfortable pillow, even when padded with clean laundry.
(3) Short dogs think it’s really funny when mummy’s face is at their face’s level for extended periods of time. That’s when their sense of humour comes out - and they take great pleasure in smacking you in the eyes and the face and across the head repeatedly - all the while laughing and going “keh keh keh” (which is the sound Little Dog makes when he’s laughing).
(4) Short dogs with water-intake-related OCD really don’t care what they find in the toilet. They’ll drink it regardless. (Let’s have a collective and huge “Eeeeeeeewwwwwwwwwwwwww” here, please. On the count of three…)

So, yeah, with another day almost done and myself getting closer to feeling like the “myself” I am these days, all is status quo in the neighbourhood.

Excuse me while I go beat Little Dog senseless. His water-intake-related OCD is in high swing tonight. I swear I’m just going to throw him in a swimming pool and let him at it. Oh now wait…he doesn’t know how to swim. Is that a problem or an opportunity

I’m feeling better. ‘Just wanted to drop a quick post to keep you informed. I’m going back to sleep now, though. Nighty.

I’m not feeling well tonight. I’m going to bed to cuddle my pillows and Zachy and Boo Boo. I’ll respond to comments and write a real post tomorrow.

Sorry, folks.

Or not. I mean, it might not be 11:00 - but the pictures are here regardless.

If you are at all squeamish ignore this post. Close your eyes and scroll down. High “eeeeewwwwwww” factor here.

If you are at all squeamish ignore this post. Close your eyes and scroll down. High “eeeeewwwwwww” factor here.

If you are at all squeamish ignore this post. Close your eyes and scroll down. High “eeeeewwwwwww” factor here.

If you are at all squeamish ignore this post. Close your eyes and scroll down. High “eeeeewwwwwww” factor here.

If you are at all squeamish ignore this post. Close your eyes and scroll down. High “eeeeewwwwwww” factor here.

You’ve been warned. On we go!

Two weeks ago I had a power port inserted in my chest to make chemo a bit easier to administer and to save my veins from further damage. A number of you have asked what this thing looks like. Until Sunday there really wasn’t much to see because the surgical butterflies were still intact. They’re off now.

If you are at all squeamish ignore this post. Close your eyes and scroll down. High “eeeeewwwwwww” factor here.

You’ve been warned. On we go!

How nice! The two port entry/exit hatches are just about the right width to accommodate a vampire’s teeth.

What the piccie doesn’t show well is how far out the port extends. It juts out about 1/2 inch. The docs made this whole big thing about positioning it properly so that it wouldn’t interfere with my bra straps. Well that might be the case - but it sure as hell does interfere with the rest of the thing - and gives me very interesting looking cleavage. ‘Forget sports bras and the like. ‘Can’t even get them over the lump without having to contort my entire body so as to avoid hitting it with a hand or an arm or an elbow or…(not that it matters - the elasticity of sports bras does nothing but articulate the fact I’ve got a plastic box in my chest and cause pain that shoots up my chest then down my right arm). I guess until the thing comes out I’m going to have to rely on camis and the like.

Ta daaaaaa! C’est moi. Bonjour!!!

Can someone please tell me why the insertion cut is twice the size of the width of the port? Cripes! Luckily I heal well.

Pay attention to the red in my face. It’s not sunburn. It’s one of my wonderful responses to the chemo. See, most people taking chemo turn very pale or grey. Not me. Nope. I’m one of the few that “gets colour”. Shirley says it makes me look healthy. I think it makes me look like a clown (super creepy). But, I’m loving the idea of the hair. I have to get out to get it shaved off again. I think, due to the fact what’s growing is growing at different rates of speed, I look like a newborn baby bird - which is cute if you *are* in fact a baby bird, but not so much if you’re an adult female. Caw! Caw!!!!! Besides, I’m totally over it falling into my food, or on my keyboard. I know, I know…I was supposed to do this a few weeks ago. Eh.

Also pay attention to the eyebrows. I think those are the result of the “lost night” after that frightening chemo session - the night I took the phone into the bathroom with me and buried it in a pile of dirty socks, make-upy things, etc. Either that or they’re falling out - but doing so around my natural brow line. How curious. I guess we’ll just have to wait and see.

And speaking of hair: Let’s talk about “that hair” again. Will someone please tell me where it’s going? Please? It’s falling out (and is, in fact, almost all gone) - but where is it going? This is seriously troubling me. With the other hair (except for the eyebrows, that is - but that could have a very logical answer) I can see where it’s going (especially when it falls into my dinner or onto my keyboard). This? Nothing!!! Nothing in the shower. Nothing in the toilet. Nothing in my clothes or on the bathroom floor - or anything. Just. Nothing. ‘Definitely not something someone with mild OCD coupled with chemo brain should be dealing with. We need things to be empirical!

Well there you have it my dear friends and AW.

I’ll save the update on my fingernails and my hands for another time. Stay tuned (or take this as your chance to scurry away).

A few weeks ago, I dropped by to let you know I lost my taste buds and to enquire if anyone has turned them in. A very lovely employee went through the box of turned-in items and, thankfully, found them (or so we thought). She handed them over to me - then asked if I’d like anything else.

I’m sorry to say the taste buds I ended up with not only aren’t mine - but appear to malfunction severely. Things that tasted great two weeks ago now taste like pig toes smell, or like wet dirty cardboard smells, or like my garbage can smells after it’s been sitting out in the sun for a week. Meanwhile things that tasted just horrible two weeks ago now taste excellent.

There doesn’t appear to be any rhyme or reason as to these changes - or why these changes are occurring at all - but they’re annoying, to say the least.

I’d also like to mention that these taste buds - for some unknown reason - appear to be connected to my brain in such as way that they induce cravings for certain foods I don’t dislike at all but never, ever in my life craved. Like strawberries. Or raspberries. Or white cake with white icing.

(Huh? Nobody craves white cake with white icing. Don’t get me wrong - white cake with white icing is very nice. If it weren’t it wouldn’t be used to commemorate major life experiences like weddings and baptisms and college graduations. But crave? Nosirbob.)

If you would be kind enough to outline the procedures I need to go through in order to return these taste buds to your Customer Service Counter I’d be very appreciative; meanwhile, please be on the lookout for my actual taste buds. They look something like this.

Because I don’t have a television in the living room and do, sometimes, need a little “idiot entertainment” I’ve been watching TV shows via Hulu. Because of this I’ve found some very funny shows that I never would have seen had I to rely on an actual television. One of them is called “Back to You” - which is about a newscaster’s (Kelsey Grammer’s) return to his launch city of Pittsburgh, PA and trying to reconnect with his old team. Anyway…

One of the episodes I watched tonight (while typing emails and the like) partially revolved about Anthrocon, an annual convention for people (mostly scary middle-aged men, in fact) who dress up in furry creature suits (???) and, as stated in the episode “get beat up by Trekkies”. Now I admit I find the whole practice of middle-aged men dressing up in animal costumes for “entertainment” to be either a bit too kinky or a bit too worthy of police surveillance for my tastes - but the episode itself is a snot and tear inducing riot. Click here to watch. Pay particular attention to the scene where the “furries” all but assault the investigative reporter.

Either this show is really funny (this episode in particular) - or the chemo and oxycodone have completely fried my braincells.  I’ll let you decide.

To add more insult, I’ve got a whole new area of itchies. The area is right above where the plastic tube attached to the power port is embedded. That means when I do scratch it the little tube rolls itself around under my skin.

Can we have a collective “eeeeeewwwwwwwwwwww” now?

…coconut milk!

I’ve got a pot of thai coconut curry rice cooking. Veggies are ready to get wokked. Fingers crossed this ends up tasting good to me. It smells great. But then again, so did the shrimps I ended up tossing in the trash.

Little dog has decided to go on a hunger strike. He won’t eat his dinner. Instead, he’s moping around because I won’t give him any more water. It’s not like he’s thirsty - or it’s warm in here. He just drank about 2 cups. He’s just being ornery. Earlier today I put him outside to explore and pee and get some fresh air. Little Cork/Pork stopped by to visit - and Syddie ignored him. In fact when Cork laid down next to him Syddie got up and moved to a spot in the garden about 3 feet away. Well, he can choose to eat or not. He’s not getting any other offerings.

Little dork.

UPDATE 1: The coconut rice and veggies were as good as they smelled when cooking - and they even tasted like they were supposed to taste. ‘Might have gone a little overboard with the curry paste for most, but for me it was just right. I’m going to use the sauce recipe as a base for tofu, mushroom and coconut curry soup later in the week.

UPDATE 2: Little dog got bored with his hunger strike and ate his dinner. He’s now walking around with oatmeal stuck to his nose. He won’t let me clean it off. Maybe he’s saving it for a late-night snack?

Successful sunday evening well underway.  Bring on the peanut butter M&Ms and some light reading.