cancer-face part 2. The update.

Addendum to the shrunken skin...

To better illustrate my skin woes...(though, really, this video and photos do nothing to show how much puss and gunk accumulates out of all that redness. which is even more fun fun fun to deal with.

Yaaay Chemo.

I think I must have put my skin in the dryer and shrunk it

In my grievances for this week (well...been more than a week really), has been my poor battered skin. I do believe the Erbitux is the cause, but whichever of the various drugs is causing it...it's a bit too much for me to handle.

I have just holed myself up in my room, calling off work eventually, because being out among people is just a pain in my butt. Its not just that my skin isn't pretty. Really...who cares. But add on to it that it feels a couple sizes too small for me, its itchy, and raw, and stinging...all around miserable.

Chicago winters definitely don't help my situation. I can't even open my mouth all the way without stretching down my eyelids so much the bottom lid pulls away from my eyeball. THAT tight. And there's a lovely little patch of super raw rashy skin just under my chin that is so super tender to EVERYthing. It stings just raising my head to look up. So, I'm uncomfortable, to say the least.

I debated taking the photos, seeing as just walking past the bathroom mirror distresses me. But, since I told myself long ago that I want to document whatever I can, the ugly of it all..why not bare my raw chapped face to the world wide webs.

I have nothing more to say about it. I want my skin back. Amazing how seemingly little things could cause so much grief. Gah.

My Reminder.

I realize this is not exactly the timeliest of posts. But, I figured, looking back over alot of what I've written...sometimes...I may seem a bit...depressed.
Now, mind you, that is not to say that I do not have a large portion of my being consumed by ill-feelings of some sort at any given time. HOWEVER, I don't think that it speaks to the truth of who I fully am.
I don't think I'd ever be described as "perky", but alot of the time, I'm pretty goofy. I like to laugh. Yea, I know, everyone says that. But I do. I love nothing more than getting swept up by a wave of laughter so hard and at something so ridiculous that I am rendered unable to speak or breath for several minutes. (alot of you who know me in person have witnessed these laughing fits, which often end in me doubled over clenching my gut with tears streaming down my face).
This is January. of 20-flippin-10! and I am still here!! I am here, and I am able to laugh. Not at everything. Not all the time. But I am still capable of laughing. Smiling. Cracking dumb jokes. Talking smack. Living.
The living isn't easy. Its hard going most of the time. But I spend all my efforts on trying to make it as easy as it can be, at least for me. I try with all my might to seem as carefree, and as giddy as you please. So maybe I'm not. Not all the time. But as the saying goes, you fake it til you make it, right?
I feel bitter at the world around me and my circumstances quite often. My inner dialogue often falls into rants about how unfair things are, and how jealous I am of everyone else around me. Right or wrong, I fall prey to that.
But I can still laugh. I savor that laughter like it was a fine wine. In my place in life, at this point in time, laughter holds more value than any material thing. This isn't prophetic earth-shattering information or observation. I hear it all the time, how much people supposedly value laughing (and good friends, sharing moments, etc etc). Rather, this is just a reminder.
No New Years Resolutions, more so, these are my New Years Reminders.
I'm alive. I'm fairly functional. I have amazing family. I have incredible friends. I have support in my corner. I am still not an asshole, and I am not normal, no. But I can laugh my ass off sometimes and that can be all I need.

Death Row

That's pretty much what it feels like. Someone whom I hadn't spoken to for a little bit asked me today if I "was any better or still doing treatment?". Before I really even thought about it I scoffed and blurted back "I'll never get any better, I'm on death row, man."
That's when it hit me.
It's essentially how it has felt to me being sentenced to unending chemotherapy just to maintain or manage the cancer that they cannot cut out of me. I am aware that the quote on the back of my Cancer Sucks shirts says "Cancer is a word, Not a Sentence" but it's moreso the idea that regardless of being diagnosed with Cancer, no matter how "well" you take THAT awesome news...in addition...you have to endure the same crap-ass treatments from there on out. Without much end in sight.
Before ever knowing cancer as intimately as I do now, I had a certain...expectation, if you will. Not that I ever expected to get cancer, mind you. But from what I knew about people who got cancer, you found out about it, got chemotherapy (honestly had no clue as to what that actually meant) and/or radiation (my preconception of this was you sat in a room and got blasted with laser beams for days on end. theoretically, I guess I wasn't far off). Than, you got some kind of surgery to cut it all out. And after all that is said and done...you're given the all clear, you're now respected and admired more b/c you were brave/inspirational/strong, and you got to call yourself by a new title of Survivor. That's how it's supposed to happen. It still actually happens to people in that way sometimes. Or, the expectation is you've found it way too late, its so far gone, you instantly just die. Note that in either of these crassly over-generalized views, do you get an ambiguous "well, you have cancer, we can't really get it out of you, or even see it, but it's there, so we're going to give you alot of drugs, lock you in to a regimen that will cement you into your current location/hospital, and really, we don't know what to expect or what will happen because of all this." That isn't how the story is supposed to go!! Damnit.
I'm not exactly sure what my motivation is. What is the impetus for walking myself into my doctors office once or twice a week, sit down in that awesome vinyl "recliner", having a needle plunged into my chest and waiting around a few hours while my body is infused with drugs that set out to destroy cells that seem to keep outsmarting us?? I ask that simply because, the more I think about all the time I spend getting treated for cancer, all I can see is all the things that get taken away from me because of it.
I can't work a full time job.
I can't have children.
I am not even entirely sure I can have sex.
I can't pay my own expenses.
I can't even have a bank account in my name.
I can't really move off to a new city.
I can't take a vacation thats longer than a week.
I can't fart.
I can't drink an iced tea.
I can't go for a full day without a few half hour visits to a bathroom.
I can't eat a salad.
I can't go to college.
I can't, I can't, I can't.

I'm sick to death of shit I can't do. I'm sick of all the trivial restrictions this b.s. has put on me. And even though I describe it as trivial, it really isn't. I may never have really wanted children. But the sheer fact that I CAN'T...as a ramification of things done to me in order to preserve my life...that human right was just blatantly taken away. And to some of the other examples I've given some may argue "oh, you can...it's just a challenge". Yes. You are correct. There are things I could do that may just be an extra challenge...I could fart....through a tube inserted into my stomach. I could eat a salad. Slowly. Chewing to mush. With a chaser of grape juice and an extremely loooooooonnnggg and frustratingly exasperating day in the bathroom later....yes.
I look at my examples and I see whining. But so flippin' what!! I think I've earned the right to whine.
Even though ultimately, its not really whining. It's just honesty. I've been living with this long enough to know that just like I will never be President of the United States...I will never be able to do or have some of the things I touched on.
And it's all cancers fault.
So basically, I'm just sentenced to the rest of my days, however many they be, being stagnantly resigned to this form of death row. It's morbid, yes. It's twisted, true. But it is.
And do not mistake this for gloom and doom. I'm simply being bluntly honest.
I am not seeking sympathy. Or fishing for inspirational words. Trust me, at one point I was THE Queen at "reframing" the situation. (who else could come up with rationalizations like: "well, radiation isn't so bad...it's laser hair removal, I get a great bikini line from it." or "being infertile and sterile isn't that awful, it's like built in birth control! I can go slut it up with no fear of babies!")
But even the Queen of it gets tired of hearing it sometimes.

From Last August

Blow after blow,
taking me way down low.
And I don't know
how much more I can go.

Put on that smile and yes,
it works for awhile.
But at the end of the night,
I throw it back on the pile.

If I just want to lay,
completely wasting the day,
Don't need to hear you say,
I shouldn't pout in that way.

Happy isn't always right,
Laughs can't help every fight,
I know I can feed my soul
Even when pain takes its toll.

Washed out

cool stares and premeditated words,
its changed me.

orbiting around a piece of me that no longer exists,
its changed me.

normalcy averted. bliss thwarted,
its changed me.

doors closed shut, but trap doors left open,
its changed me.

appreciation grown while patience is lost,
its changed me.

a gift in disguise, or a curse in plain sight,
its changed me.

clinging to desire, and awash with ambivalence, what I wouldn't give...
to be able to change it.