Not Winning

I've been trying to return the focus of this blog back to art, mostly my own, but I've been meaning to throw out a cancer update as I haven't had one in a while.

There isn't anything new to report, just some remaining issues to deal with. Some have gotten better, some worse. It's hard to say whether the saliva issue is getting better or not. It's been six months since my last radiation treatment and I have to say that I don't know that I'm all that much further than I was last August. There is some difference in that I can swallow certain foods that I wasn't able to then, chicken and certain other meats in particular. Breads are still pretty much a no-go unless I have a full glass of whatever to help it down. The lack of saliva simply makes it impossible for me to swallow such dry fair. I can swallow it part way but once it hits the back of my tongue, it sticks there, holding on for dear life and sometimes even milk or water won't force it down and I have to choke it up or choke on it. Makes for great dinner company.

The main reason I'm not sure there's been much progress, even though I can eat things I couldn't before, is how dry my mouth gets at night. This hasn't changed much since August. I wake up 5 or 6 times to get something to drink or simply rinse my mouth, as my lips tend to get stuck to my teeth and my tongue to the roof of my mouth. I used to keep a small bottle of Biotene next to the bed but that stuff is useless. Water works just as well, which is really only for about an hour. Then it's back to not being able to open my mouth. On the plus side, I'm fairly certain the surgery cured my sleep apnea.

And then there's my shoulder. This is part of the whole neck and chest muscle thing. The surgeon took my right pec muscle and used it to fill in the gaping hole in my neck after surgery. The muscle still works, but being a chest muscle doesn't much help in your neck. It needs to not work. Any flex of my chest muscle and I get an unpleasant "tug" in my throat and mouth, where my tongue attaches to the base of my mouth. The muscle was reattached at the underside of my jaw and any use of that muscle pulls on the jaw and tissue there, feeling like it's going to tear every time I do something like roll over in bed. Anything that uses that pec muscle. A push-up would be a bit traumatic.

But back to the shoulder. The chest and throat issues I've kinda learned to live with. Therapy doesn't seem to fix things so much as alleviate the tightness for a while. The problem with my shoulder can be helped by therapy, but I'm not sure how much, really. When they took the muscle from my chest, they only cut one anchor point, at the shoulder, and simply pivoted it around and reattached that anchor point to my chin. In addition to doing all the chest flexing, this muscle also helped keep my shoulder in place, helped keep the joint attached. Now any extreme movements of my shoulder, like scratching my ass or sleeping on my right side, make it feel like my shoulder has dislocated, which is a real possibility.


And then we get to the other issues. The ones that have nothing to do with cancer. My roommate, Kevin, was basically killed by a drunk driver in 2007. He died on the street and was revived in the chopper. Crushed skull, lacerated liver, broken bones now with metal in them, brain trauma. He should have been on disability since then, but since his wife was a waste of skin like mine, she didn't do much of anything to help him and the other people in his life didn't do much either, apparently. Anyway, long story short, he had a seizure the other day. Woke up on the floor with blood in his mouth. Went to the emergency room and got x-rays and a cat scan and yup, seizure.

So now, doctor's orders, he can't drive, can't work and needs to get the disability he should have been on since '07. Except that it takes about nine months to get approved for disability. And how is he supposed to live between now and then? Food? Rent? Bills? With no job and no car and no ability to work? Seeing as Arizona has no financial assistance for adults... No answer to that other than - I have to find more work than I already have but somehow make sure my part-time crap job is crappy enough to not make more than $900 a month or I lose my health insurance and can't get it back. As a friend said to me today, that's literally life and death for me.

So yeah, not winning.

"Consider God's handiwork; who can straighten what He hath made crooked?" - Ecclesiastes 7:13

 It's that time again kids! Time to enumerate the things that are still screwed up following my bout with the cancer. Let's see how many we can count!

First, and probably most distressing, I no longer have the ability to sing.

I'll let that sink in for a bit. Pay no attention to that cheering, it's probably some Tea Baggers responding to Arizona's new "No Insurance, Go Die" policy.

 

Yeah, the voice is gone. After that, the lack of saliva glands and the accompanying inability to swallow seem a small thing, I know, but I assure you that swallowing your food is essential to actual eating. Otherwise you're just chewing and spitting. I keep thinking of Johnny Dangerously. "Gee, it'll be good to see ma spit again." I wish I could get that operation. It'd be nice not to wake up in the middle of the night with my lips stuck to my teeth.

Then there's the ball of whatever that's permanently stuck in the back of my throat. Hack and cough and I might dislodge it for a moment, but it's back in a couple of minutes, like a mucus-y little gremlin waiting for me to eat so he can horde more stuff about him. I have come to the conclusion that it won't be cancer that gets me, it'll be "complications from pneumonia" in my old age when I become unable to deal with this shit any longer. Any liquid or solid tends to get shoved upward back there, only to come back after each attempt to fully swallow it. Sometimes it doesn't go down where it's supposed to and ends up in my windpipe. I can't imagine being able to deal with that forever.

Less annoying but still problematic is the Frankenstein mess that is my neck. I've grumbled about this before, the fact that all of my neck problems come from the attempt to make me look more "normal". The skin graft in my mouth I get, since I was missing a good portion of the back of my throat, but the neck thing, no. I'd rather have a working chest muscle without the screwed up yanking of my jaw whenever I move my arm. I'd rather have a bit of a hollow chunk in my neck than this messed up junk I need physical therapy for. It has almost nothing to do with my actual cancer and it's frustrating. The scars mean almost nothing to me and the fact that I'm suffering more than necessary due to what was a cosmetic procedure just seems backwards. My poor neck tendons on the right side look like the cables holding up a suspension bridge.

On the plus side, I can now grow a nice and full mustache for the first time in my life. Too bad it looks like Matt Damon's in The Informant. Chin whiskers are another story. Kinda like my Three Stooges hairline. I had to do the Marine cut to make up for the fact that the back of my head looks like Moe's, or Forrest Gump's.

The other good news is that I feel pretty good. No more fatigue, at least not lately, and all my scars are healing well.

Blue Pill, Red Pill

Not to be overly dramatic, but it really does feel kinda 'Alice down the rabbit hole' lately.

I posted my thing on two other Facebook pages, Stephanie Sauter and The Faces of the 99%. From there it went to friends telling me that friends outside of our circle had sent it to them.

Then it made it to some guy named Jeremy Lytle



Someone saw it there and posted it here

 The front page. I also saw it on Reddit with a huge comment section. That's the main thing I guess, people talking, because there are a lot of dumb ideas about what Occupy Whatever is about. Unfortunately there are a lot of dumb ideas within Occupy Whatever about what it's about as well. I don't know if my story fits in what most people think the movement is about, but I think that's part of the problem. There's a lot that needs fixing.

Digression, I duz it.

I had gone to Stephanie's Facebook when I saw her...testimonial, for lack of a better word. Her story sounded similar to mine and it inspired me to make my own. Sorta. I'd had a healthy internet life at one point in my life, and I am better for it, but man, it can be tedious and trying and a bit unnerving at times, but I'd decided a while ago that I was going to have to live a public life if I was going to be an artist.

It's still a bit creepy though, seeing people writing about you, speaking about you, especially when there's no way to speak back. The other side of that is, now I'm worried I said something back there in the basement of my blog that's gonna come back and bite me. I know I couldn't have been good the whole time. My main concern though, is my kid. I don't want some jerk harassing her over something I did. She can totally take care of herself, but still. I did tell my parents about it. I'm sure they're thrilled!

Careful Where You Put Your Feet

I wouldn't call it viral, but the 99% pic I sent to Faces of the 99% has gotten quite a few hits. It's a little intimidating but kinda cool the way it's spread outward. This being the internet, there are trolls at every turn, waiting to crap on whatever it is they disagree with. The sick thing is they're trolling people who are, for the most part, speaking out in serious pain and fear, and these a-holes are trolling them, telling people afraid of homelessness and death, that 'if they just had a job, they'd be doing better', and worse. It's really disgusting.

I've had this sense that most of these types of people, aside from whatever political views they hold, seem to be unable to think beyond two levels deep. The whole 'consequences of your actions' thing.

I had an argument with a friend a while ago about health insurance. This was when we both had good  jobs and good insurance. His argument was the same one you always hear. The same one an old high school friend trolled one of my Facebook posts.

"I'm tired of paying for something I don't use and will never need."

This is actually what she said.

There's so much wrong with this statement it's kinda sad and infuriating. Both people were saying this as it refers to welfare and taxes. Basically, they're tired of paying taxes that help others, not themselves. When pressed further, the more honest of these cynics will say they're tired of paying taxes for lazy people who are just taking advantage of the system. Some will go even further and parrot the old "I'm tired of giving away my hard-earned money so some lazy fat woman can sit in her house and pump out welfare babies".

I've heard the same argument from people who are sick of paying taxes for public schools because they don't have kids and never will.

These sentiments are perfectly fine and good. You want to believe this is what happens, fine. There's no person on the planet that's going to convince you otherwise. The problem is, when they actually do lose your job or you or a family member comes down with a catastrophic illness, all that foresight and brilliance that got you from there to here isn't going to help you, and my taxes will then be paying to save your necks.

The main issue I have; if you're unwilling to help your fellow American when they need it most, how can you call yourself an American? Why is it that you can't see that thing I keep hearing people like you quote: "There but for the grace of God..." Is it that you think you have God's grace and therefore nothing bad will ever happen to you? Like Job? Mysterious ways and all.

Here's another one: you are amazing, yes, it's true. You got where you are, all by yourself, because you're a smart, hard-working individual. Fine. What about your adult daughter? Your sister? Your father? Did all your foresight and hard work protect them from car accidents, cancer, crime, Alzheimer's, tornadoes? Will your health insurance pay for your non-dependent son's cancer treatments? No, it won't. Do you have enough saved or enough equity in your home to pay for his treatments? No, not unless you're in the 1%. Are you going to let your son die? No, your son is going to NEED welfare.

Or should I assume that you believe your shining example will ensure that your son or daughter or sister or father never loses a job or gets dropped by an insurance company or gets denied due to pre-existing condition?

Death Panels - Who Needs Em?

Perchance

Ah, sleep. Wouldn't that be nice?

The ringing in my ear has gotten a little worse. Nothing too bad though. The side of my neck is starting to look a little 'woody' though. No burns so far, but definitely red. Perpetually sunburnt. And of course the inside of my mouth feels like I brushed my teeth with daggers instead of a toothbrush. Vicodin isn't really doing much for that, nor is the salt and baking soda gargle the doc said I should do four times a day. All things I can deal with, except for the gunk in my throat. That's driving me insane.

I guess that's what this blog has become. Rather than a running journal, a list of complaints. Better here than boring my friends and family I suppose. At least I have a good book to read in lieu of sleep. Dance with Dragons is long but it's not boring. Almost 1000 pages and I'm about 80% through. So far no major characters are dead. It's the little things...

I need to go to DES tomorrow, but I won't be able to get there till Friday. I got a call that my benefits will be cut off at the end of the month. I think it means my food stamps, but knowing these idiots it could mean my Access. That would be bad. So I have to go stand outside for a couple of hours in 100+ degree weather in order to find out exactly which they mean and how to stop it from happening, whichever it is. If they kill my Access, according to yet another letter, the state is stopping all new applications, which mine would be if they stopped it and I had to try and get it restarted. Budgets ya know. Cuz it's more important to pay shitty politicians and keep the money-making highway cameras running than it is to make sure people don't die.

Which brings me to the brunt of my long-term problems. If and when I'm considered a "survivor" of cancer, rather than a patient in treatment, I either have to somehow remain unemployed, and I'm sure with a good reason the state will accept, or...what?

If I get a job, I'll make too much money and no longer have AHCCCS and not be able to afford any followup treatment, such as the PET scans I'll need to make sure I'm still cancer-free. If I go back to Pizza Hut, Cigna has already dropped me and if I re-enlist in their insurance plan, which won't pay for even 3% of the costs of such followups, it will be considered a pre-existing condition anyway and I won't be covered. Getting my own insurance is an option, but the cost will be way more than I'd make, and it would still not be covered as it will be considered a pre-existing condition. Even if I'm lucky enough to find a real job with real insurance, it will still be considered a pre-existing condition and I won't be covered.

So I'm basically screwed. I have to remain unemployed and hope the state ignores the fact that I'm essentially able-bodied but unable to work because work means no insurance. It's a maddening circle.

Then there's the fact that if that does work, I'm stuck in Arizona for the foreseeable and long-term future. The same problems will apply to any job I get anywhere else: pre-existing condition. Even worse, Florida is in even more of a crappy condition thanks to their moron governor, Rick Scott and his manic, idiot-boy cost-cutting. It was bad before, where anyone applying for their version of Access had upwards of a 3 year waiting list, but now, programs like Medicare and Social Security and other safety nets for people like me are being cut like a 14 year old girl's forearms; left and right for no good reason. Just to do something. And then there's the fact that I would have to establish residency. I'm sure that's a nice flag for me not to get help.

So I'm stuck in Arizona. I can't move back to Florida to be closer to my daughter. I can't even move into my parent's house, which they've offered. Not unless I want to live the rest of my life on hopes and wishes that my cancer stays away. With no followup tests, despite the fact that there's a chance that the treatment alone, you know, all that radiation and chemotherapy, might be causing secondary tumors. Despite the fact that I still have a chance of developing further cancer in my remaining tonsil and lymph nodes.

And forget finding help anywhere else. I gave that search up long ago. The American Cancer Society, Cancercare.org, Livestrong, Medicare, Social Security, Disability. They have nothing other than support. I can go to a meeting every day of the week in every city in the country but there's nothing at all to help with the cost of treatment or followup. I can get counselors to come to my door and talk to me about how f-d I am and give me hugs, but not one single group to help with the financial side of things. Unless I was a woman. There seems to be a number of groups that offer help for women. Kids too. Even minority groups. No such thing for a middle-aged white guy. Social Security only considers me disabled if I need dialysis. Medicare will offer nothing unless I go through Social Security first. Hell, even the local chapters of the American Cancer Society told me they don't even have food programs, but I can come down to the offices and rummage through their clothing donations.

But yeah, one Predator Drone costs $4.5 million.