A Name For It

Don't take this post so much as a list of complaints as a list of information. Yeah, that's right, I'm not griping, I'm informing! Go with that.

I just found out that something I've been noticing isn't just some random thing but it is an actual condition with a name and everything. Right about the time my radiation treatments stopped I started noticing an electric tingling in my neck and back if I bend my neck forward. Lhermitte's sign. It's not an unpleasant feeling but it's definitely something I worried over a little bit. My Facebook friend, Jennifer Morita Kerr, had asked me if I had had any neuropathy, or nerve damage, from treatment and I hadn't thought of mentioning this, as I hadn't been aware that it was technically neuropathy.

Lhermitte's sign can be caused by radiation as well as chemo, particularly large doses of platinum-based chemo, which I had with Cisplatin. It is also caused by spinal disk herniation, which I also have (unrelated to the treatment) as well as nitrous oxide abuse, which I do not partake in, as well as a number of other conditions, including Multiple Sclerosis.

So let's expand the list of knowledge:

• Nerve damage to:

Tongue
Soft palette
Right side of neck from jawline to collarbone
Right ear
Right side of chest
Spinal column (Lhermitte's sign)
Throat muscles
Slight numbness in fingers and toes (dissipating)

• Extremely reduced saliva production making eating a risky chore
• Radiation damage to throat muscles causing them to misfire or not work at all, making swallowing an always-risky event
• Pain and discomfort in shoulder as well as seriously reduced range of motion
• Pain in neck and chest from reconstructive surgery (the whole chest muscle in my neck thing
• Tendonitis in my neck where tendons are exposed due to the removal of tissue and muscle covering them

Minor complaints:

• Tinnitus (constant cicadas in my ears). Cisplatin is known to cause this. It basically kills the little hairs in your ear canals.
• Reduced hearing (probably the same
• Permanent loss of hair at the base of my skull
• Lack of "seal" in mouth, adding to my difficulty swallowing as well as making sneezing and blowing my nose difficult. No gargling. Too much risk of choking.
• Almost daily muscle spasms in neck
• Circulation issues (always cold)
• Pain in jaw (minor TMJ)
• I think I have 'chemo brain'. I have always been a bit of an airhead, but my usually excellent memory seems to have suffered a bit.
• I miss my tooth and my chin whiskers
• I also miss sandwiches. A lot.

Cancer sucks. All cancers are horrible destroyers, but of all the various forms cancer takes, Head and Neck Cancer is among the most traumatic when it comes to long term effects. I'm not trying to diminish anyone else's struggle or victories over cancer, but losing a breast or part of your lung isn't quite the same as losing your ability to eat, talk or in some cases, breathe without help. Roger Ebert lost his entire lower jaw. This means a permanent feeding tube and no speech, even with a throat mic.

*edit* and yeah, I did minimize everyone else's struggle. Losing a breast or a piece of your lung is pretty damn traumatic, to say the least.

Still, even with this laundry list of gripes, I feel very fortunate. That it was found in time. That I found a great surgeon. That my awesome oncological team did what they said they could do - cure me. That I can still eat AND TASTE real food. I don't know if I would make it very long pouring nasty gunk in a tube in my stomach for the rest of my life. I'm fortunate that I have amazing friends and family. I'm fortunate that my list of ills isn't longer and scarier. That I can function. That I'm alive to go see The Avengers with Kaia earlier tonight.

So Happy I Forgot

My last post promised news and I dropped that like a bar of soap. The good news and my kid coming to town had me a bit distracted.
My scan was all clear and my doctor was very pleased. She only complained about how skinny I am. I think I am a bit thin, but am not really interested in packing on the pudge she seems to be remembering from before treatment. I've actually gained 4 pounds since my last appt. My next scan isn't for six months now. One more 6-monther after that and then it's once a year.

R.I.P. MCA

I'm a bit behind on this one. Every news and entertainment outlet has already done their retrospective tribute to Adam Yauch. All the tweets have been twittered and the faces booked. I write this now almost out of a feeling of obligation. It's not that I don't want to say something about the man, it's that I don't want to think about where he is and where I am.

I was never a huge Beastie Boys fan. To be honest, I hate everything they did before Ill Communication, where they truly crossed hip-hop and metal, not that screamy crap rap they were doing first. Brass Monkey and No Sleep make we want to hurt things. I've liked them since then, but only own one CD, said Ill, and don't have any songs on any playlist.

When I'd heard he had died, I hadn't known at first why. I was fairly surprised, as I hadn't known he was Illin. Too soon?.. Then I found out that he had cancer in one of his salivary glands and things got real, as the kids say. It's a strange concept, that any cancer above the chest is considered to be in one category: Head and Neck Cancer. I'm not sure if brain tumors or skin cancers on the head or face fall into that category, but Salivary Gland Cancer and Tonsil Cancer do.

I find myself wanting to know more about his experiences, his decisions. I can't wrap my brain around why his cancer took his life and why mine didn't. Why his took it after three years. Did he stop treatment? Did he opt for less aggressive treatment? Did he just have a very stubborn cancer? Did it spread? Did it go away only to return? This is our concern, Dude.

Everyone's cancer is different. I guess that's the thing I'm learning here. Why do some people end up losing their bottom jaw and some people can still use theirs to gripe about the food they have trouble eating? Get checked, people.

I have a PET Scan in a couple of hours. This will be my third scan. Second since ending radiation and chemo. Hopefully the area that was a little 'glowy' last time will be gone.

*edit* I'll know on the 10th when I meet with my oncologist.

366 Days

If you want to test your memory, try to recall what you were worrying about one year ago today.   

E Joseph Cossman

"I can't see how it's not cancer."

That's how my day went, one year ago today. My cancerversary.

I had figured out that I had some sort of cancer before I got that casual confirmation. Everything I'd read said either an infection or cancer. Infection had already been ruled out. I don't know if my knowing affected my reaction as much as one would think. That dramatic surprise wasn't there, but like a lot of people, I sit in every doctor's office certain that they're going to find something horrible. Sucks being right sometimes.

Of course, knowing makes no difference in how you go from there. You just have to deal with it as long as you can until it's done. If I had to sum it all up, that's how I'd describe my experience with surgery and treatment and the permanent effects of treatment. Endurance. That necessity of life in general, enhanced a bit. Quite a bit at first, but now it's slowed to a steady pace and it's just another thing to deal with like brushing your teeth twice a day, plus.

That's kind of a good analogy, actually. I used to brush my teeth twice a day, sometimes three. Now I have to brush my teeth four or five times a day, at least. No saliva and stuff. I used to be able to wolf down a slice of pizza in about 30 seconds if I was in a hurry. Now, one slice is a half hour affair and it's cold and I'm bored and tired of chewing by the then.

But this wasn't meant to be a gripey post. I'm grateful to be here, one year later, to be able to write this. The support that friends and family and complete strangers, and even Pizza Hut gave me didn't kill the cancer, but they saved my heart and mind from certain collapse. My parents did what parents are supposed to do and took care of me. Babied me, almost, highlighting how amazing they are, sharper against the dimness of the many horrible families I've known.

It's 366 because of Leap Year, in case you're wondering.

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.

Samantha Channels 1975 - 2012

There have been many times when people have said "They're not real friends. It's just online." Now, I've known this is baloney for a long time, but sometimes you get poked by the reality of knowing and not "knowing" people you meet online.

I have never met Samantha. In fact, I've never really even chatted with her online either, merely shared a "like" and a comment every once in a while. She was only a Facebook friend, after all. I'd met Samantha fairly soon after I was diagnosed. I had been searching for any support group I could find and found her through some Facebook group or another. The rest is littered with cliches like 'struggle' and 'brave' and 'heartrending'. She inspired me with her strength, and her family's strength and loyalty made me smile, reminded me of my own.

Samantha had a particularly ravenous cancer - melanoma. She had been fighting tooth and nail when I met her and continued fighting, even as the news kept getting worse and worse. Through numerous chemo treatments to clinical trials, she didn't quit, though you could see in her regular updates that she was struggling and tired.

I found out about her passing pretty late. Mostly because I'm not the best FB friend. I'm bad about going past the update page, but I did notice I hadn't seen an update lately and I knew that it meant the worst. I procrastinated, like with everything else and now I feel like the worst kind of friend.

Goodbye, Samantha. Peace in that unwanted but much needed rest. You might not have been a "real" friend, but you meant a lot to me.

Lost Keys

Not really. Sold them. Sold it - one key.
The old Nissan I'd had sitting in my driveway, wavering between trying to fix it and needing money. Money won and Car-With-No-Name is gone.

Later that morning, as I'm driving to finally get a tire for the one I'd had a nail in since November (thanks Wendy! but bills came first), I see a pristine (to my eyes, anyway) Nissan Altima just like mine, same color, clean, a silver ghost riding ahead of me.

Where wilt thou lead me? speak; I'll go no further.

My buddy with a potential job offer in Miami called to talk about it. Most likely head to an interview if I get a positive response to my resume and samples. We shall see.

On to better things! I had saved one of these links before my surgery and stumbled across a second one last week, now I can't find that first one. For the morbidly curious like myself:

****Be Warned! These are pictures of surgery.****

Not my surgery, but similar to my surgery. The main difference seems to be, aside from the location of the cancer, which required the removal of part of the jaw, there is no pec-flap procedure done that I can see.
Again, not fun, not cool if you are at all squeamish. Also one more reason why I feel lucky.

http://www.flickr.com/photos/hapshaw/sets/72157623086832915/

If I were in his place, I'd probably still feel lucky, considering how much more debilitating it could have been. I still worry about a recurrence and losing my ability to eat during treatment. The titanium jaw looks extremely fragile and painful, though, and he seems to have a lot of nerve damage.

All We've Ever Had Was Now

Got the results of my latest PET Scan and everything looks good. My white blood cell count is at the low end of normal, there's some "stable" metabolic activity around the surgical site as well as the opposite side of my neck. Doc says that's all normal and she's happy with the results. Which means I'm happy with the results. Two more scans, one every four months and I'm through a year. But we won't look that far ahead.

She was concerned about my neck and the tightness there. Scar tissue and muscle issues and all. She wants to have me continue physical therapy. I mentioned speech therapy and she said she could give me a referral again, but it's most likely an insurance issue still, whether they'd cover it.


The Flaming Lips' "All We Have is Now" (Music Video: Unofficial) from Brent Long on Vimeo.

Signs and Wonders

 

Still more uncertainty.

My oncologist's office called today. That's my chemotherapy oncologist. She wants to schedule a PETscan this week. My surgical oncologist had said that it was too soon since my last scan and that "if he were an insurance company, he'd deny it." I don't know how to take that. I don't know if he's saying he'd deny it because it's frivolous or he'd deny it solely out of keeping costs down. I know I'm going to need one sooner or later. Numerous ones.

So they want me to get another scan in before their contract with my insurance is done, which happens to be the 19th. I still have no idea if that means I'm done with Ironwood or not. I also don't know if they want me to have the scan because they feel it's important to have it under their care till the end, concern for my well-being and all, or if they want to get one more expensive insurance charge in before I'm no longer their patient. The equipment is in their facility, after all.

So now I don't know what to do. I really don't want more radiation if I can help it, especially if it's just to line someone else's wallet, but I don't want to pass up a scan because of penny-pinching either.

Hungry Hungry Hippocrates

I am forced to concur.
This is not my design, btw, I just Googled it.
It is for sale though.

I had three doctor's appointments scheduled today. One, with my otolaryngology oncological surgeon, another with my general practitioner, and finally the weekly physical therapist visit.

Except the physical therapist wasn't today. I forgot we're skipping a week now.

My family doctor was talkative. A lot. Said he wasn't confident he could get a speech therapist for me. It wasn't that he didn't think I would benefit from one, it was that he didn't think it would get approved. I talked to him a little about the problems I'm having with Ironwood and United. He knew a good bit about it. Then he went on to explain how a certain healthcare organization out here was bent on becoming the Kaiser Permanente of the Southwest and they were pitting health service groups - like Ironwood - against each other and pretty much using the insurance company as muscle. One of my Ironwood oncologists had suggested that I try to get Access to switch me to Mercy Care. I wasn't about to call them. I'm not even going to give them a reason to look my way, for fear they'll do something random.

My surgeon is the opposite, bizzaro version of my family doctor. He says almost nothing, and when he does, it's not clear what he means because his face is a blank. I can't tell if he's passive or pissed or asleep. He asks how you are and then just listens. No follow-up questions, really, he just moves on to the next thing. Looked in my mouth and the back of my throat and said everything looks good. Felt the nodes and such and said everything looked good. We talked about the upcoming PETscan and he said 2 months is too soon after the last one. He added, if he were an insurance company, he'd deny it. I'm not sure how to take that part. I can think of a few reasons, but only one that's bad for me. I don't want any more rads than I need, but I also don't want to skip a scan because it's beaucoup cash. In the end, I understand that I'm on welfare, so I'm not likely to be getting the best of care. Doesn't mean I gotta be happy with that, though I have to say, even though I have a lot of minor, daily complaints, I can't complain about the overall care I've gotten.

Side note: A few years ago it was pointed out that the true symbol
of Hippocrates and physicians was not the Caduceus but the Asclepius, which is
basically just a stick with a bent tip, not a bad-ass sceptre of winged power.
The world said no.

I don't have to see him again until April. I also found out that my surgeon doesn't take Mercy Care.

The Rumour of the Earth is Dim and Confused

"is that....cheering?"

Well, now I don't know what the hell to think.

I've just gotten back from my appointment with Dr. Szewczyck and I'm more confused than ever before. When I explained why I was seeing her 2 months earlier than I should be, she informed me that yes, they were still in negotiations and no, she doesn't know how it will play out, but she hopes it will be fine, but she isn't sure.

Basically what United Healthcare is doing, according to my doctor, is altering their contract to now require patients under 70 to pay 40% of the cost of their healthcare. I don't know anyone who can afford 40% of the $50,000 that a PET scan costs. Or 40% of a course of chemo or radiation. Patients over 70, you know, retirees on fixed income, will have to pay 20% of their healthcare costs. She said that what they want is to not only have Ironwood prescribe cheaper drugs, but also give less care. Of course that's not a realistic option.

So yeah, more reason to believe our healthcare system is screwed beyond repair. If insurance companies can't raise premiums they'll just cut services and prove yet again that healthcare is only for the wealthy.

The other issue for Ironwood, of course, is how can they just stop treating someone in the middle of chemotherapy or radiation treatments? So they're focus in negotiations is to keep at least these people under their care and get accommodations from UC over that. Being done with my treatments, I will not fall into this category.

Then I mentioned that I was under United Healthcare through Access and she got all optimistic and said that might change everything since it's welfare and not technically real insurance. She ran off to ask someone about it but came back without an answer. Apparently the person she talked to is swamped with calls about the very same issue.

Anyway, the gist of the meeting was that I'm "85% cured" and just need to keep following up. My bloodwork all looked good. We re-set my appt for the 3rd of Jan and hopefully we'll still be able to keep that date.

Not actual tire.
Or nail.

I was late for my appt. I walked out to a flat tire. I've had a slow leak for a few days but this is the first time it's gone flat. I used Kevin's compressor and filled it and rushed to Ironwood. On the way home I stopped at Walmart to get it patched.

Under what circumstances would it go from a simple patch to having to purchase a whole new tire? Yup, no patch. The nail or whatever is in the sidewall and therefore they can't patch it. I don't have $20 to my name, much less $80 so I told them to put the damn tire back on my car and drove home. Awesome.

The Building Blocks of Life

I've seen Jurassic Park at least 50 times and I never noticed the bloodsucking lawyer is wearing shorts. A suit with shorts.

I had re-scheduled my Dr appt for before the cutoff date United Healthcare gave me. Every appt with Dr Szewczyck is to be preceded by a blood draw, so I took the order and had blood drawn today. I had Syed again. That man is the best Phlebotomist I've ever been to. That's someone who gets paid to draw blood. The first time I went to him it was like he did some sleight of hand and the needle went in like air over a marshmallow. Today was less than smooth but still cake.

The lab's office is across the street from Ironwood so I figured I'd go over there in person and change my appt with Dr Woo as well since I hadn't been able to over the phone. I explain to the guy behind the desk and he says he doesn't understand why people have gotten those notices, they're still taking United Healthcare and are still negotiating and expect to close the deal successfully. Who knows what the hell is going on...

"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.

Unintended Consequences

 Not the usual result of rising healthcare costs. I'm now forced to stop seeing two of the three doctors who've taken care of my treatment. The people who took care of my radiation and chemo treatments are no longer accepting United Healthcare, which is what my Access insurance is, and who have raised their rates enough that Ironwood dropped them. I had two appointments scheduled for just after the final cutoff date.

So now I have to find another Radiation Oncologist to replace Dr. Woo and another Chemotherapy Oncologist to replace Dr Szewczyk. Which pretty much sucks, though if I try to look at some sort of bright side, I guess it'll be like I'm getting a second opinion... no. It sucks.

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?

Woke Up Cranky

Spammed grumpy crap on my face books. It feels like the junk they put in me are trying to claw their way into me and not leave. The dry mouth and stuff still hanging on. Still feel tired and, as of yesterday, kinda jumpy, like when you take cough medicine and it makes you jump at noises and sudden movement. Probably just in my head. Anxious to be done, knowing it isn't going to be, yadda.

I actually think it has more to do with the physical therapy. Ever since she started stretching my tendons and working the muscles, it feels like my nerves are waking up a little faster. I have a bit of a nerve thing in my arm, which feels similar to the sciatic nerve pain I get in my leg. Back injury. I think when she hit on the muscles that support the shoulder, the muscles are now pinching a nerve and I feel it in my elbow crease, just like how my back injury hurts behind my knee.

Still, I also played hackey sack with some friends for longer than I should have. Exercise is good, but I'm still sore. Went to the horse jumping event at Westworld with Kevin and his kid. Took some pictures. Still need to upload them. Passed out.

The Road Goes Ever

Goes. Doesn't look like a real word there.

Busy day, after two false starts. I post-poned the first physical therapy session so I wouldn't have to struggle to make it to a Lord of the Rings trivia thing later at Bookman's with a friend from The Plaza, Ista/Andrea. I was late and blew it utterly anyway. I knew all the answers for the ones I was there for, dammit. Even Caras Galladhon! She won anyway, and they gave everyone 2 tickets regardless, so she gave me her second, which was very sweet, considering.

The second appointment was a mix-up. They'd called me to re-schedule, because my therapist called in sick. I wrote down Tuesday, but apparently it was to be Wednesday. So, Wednesday it is and back I went.

My therapist, Janice, is an older woman, which is probably a good thing as I won't be distracted by a hot young chick groping me. She was very nice. Patient and slow and made me feel like she knew what my issues were, like she'd had experience with this particular surgery's issues.

Let's enumerate those while we're here. In order to fill in the void left in my neck when they removed 27 lymph nodes and I'm sure plenty of adjacent tissue, as least near the two nodes that were cancerous, my surgeon took a good section of pectoral muscle and detached it from my sternum on the one side and shuffled it under my skin, blood supply and nerves intact, pivoting it up into my neck area and reattaching the loose end to my jaw. I have a chest muscle in my neck, and it's always tight, like it's in a constant state of flex. The added feature is that, since it's still attached to my shoulder, when I move my arm or try to do anything that used to involve a chest muscle, my neck flexes and it has a tendency to pull down on my jaw.

The whole thing feels like an experiment that hasn't been proven effective yet and they're still working on it, but the procedure has a name and everything. Radical Neck Dissection with Cervicopectoral Flap Reconstruction. The neck dissection has been around since at lest 1906. Not sure how long they've been doing the reconstruction part.

So, I have a big chest muscle swung around and in my neck, laying on top of my collarbone and attached to my jaw. Flexing pulls my jaw down, but the whole thing is also tightening up a bit and pulling my chin down all the time, making my posture worse than it already was. This combined with the lack of real neck muscles and the tendons all around the area are overcompensating for the lack and everything is tighter than Dick's hatband. My neck feels like it's got a foot of steel cable running down it.

These issues and the other throat problems I have still from the radiation and chemo: muscles that hadn't been used for over a month, atrophied and burned with radiation. Means I have to learn how to swallow for the third time. At least everything I drink doesn't come out my nose like the first time.

Anyway, Janice ask me a lot of questions, listened well to my answers and offered some good suggestions. She checked my range of motion, mostly regarding my neck, but a little around the shoulder. I mentioned a problem with my tracheotomy scar, which seems to have gotten tighter. She massaged it, gently at first, then rather vigorously, but it does seem a lot better. She then began to press upon my tendons and certain muscles to both get an idea of what's going on, and to stretch them and get some more range of motion out of them.

Pretty standard physical therapy I suppose. While lying on the table, another patient came in, and though I couldn't see, he had apparently had his foot torn or cut off and reattached. Good times. Janice arranged my appt schedule. I'm approved for 15 sessions and they set me up for 10 already. About twice a week.

And then I was on the road, heading north to meet up with Andrea and her friend, Dave. We went to Armadillo Grill in Scottsdale. Appetizers were half price. There wasn't much I could choose from with my no-saliva issues, so I got fried pickles. I was expecting pickle chips, not kosher spears. They were good, but difficult to eat since I can't open my jaw very wide anymore (Janice is going to work on that too). That and the acid in the pickles messed with my tongue and cheek. Nerve damage from surgery and all. Figured I needed some more food in me for the long evening so I got the bread pudding for dessert. Not bad. Mine's better. Still pretty hard to eat.



The concert was at Jobing.com Arena (I hate typing that - Jobing is a horrible construction of a non-word and naming an arena after it, with the dot com part, is ridiculous). Starting at 7:30, the orchestra and choirs came out right on time. I had been wondering what the concert's format would be like. The Fellowship of the Ring played on a giant screen behind the orchestra, complete with subtitles (since the symphony was louder than the film in places), while the orchestra played the score exactly as it is played out on-screen, right down to the voice-work. There was a female performer singing the lead parts as well as the song "May It Be" for the end credits, and a young boy from the boy's choir singing during the credits as well.  Pretty cool evening.

Portal

I no longer have one going through my abdomen.

It's amazing how much better I feel, emotionally, now that the feeding tube has been taken out. It's obvious why. It's the last hurdle to healthy, the last bit of pharma invading my body. That damn tube I'm grateful I had in me was definitely wearing out it's welcome and now it's finally gone. It also means I'm able to eat real food.

The real truth is that I've always been paranoid about the tube. From day one I was trying my hardest to protect it from getting snagged or yanked. Once I had to take care of it myself, I taped it to my stomach and rigged another piece of tape to hold the tube close to it can't get pulled. I had to wear buttoned shirts so I can always have easy access to it, especially when the damn thing leaked or the syringe port came out.

Not Actual Size

So, being the paranoid guy I am, I was a bit concerned about how it would come out. How it would be, coming out. I knew the mechanics of it; screw a syringe (needle-less) to the smaller port and draw out the water in the balloon keeping it from coming out of the hole in my stomach. Once the water is removed, the tube is pulled out. Mechanics are one thing. Reality is another. I'm already freaked out that I still have two holes in me and a piece of medical equipment hanging out of them, so the idea that the Dr is going to pull this thing out of me is a bit unnerving. And knowing how this Dr works, I was kinda jittery about the whole procedure.

So I did what I do: I scrolled the internet for information. There weren't too many pictures of my particular PEG tube (percutaneous endoscopic gastrostomy), but I found a couple that made me feel better. Once the water was removed, the tube should be fairly smooth, with no ridges or changes in diameter. I think part of my paranoia in this area comes from my experience with the drainage tubes after surgery. I was imagining the same thing happening, but in my stomach as well as my abdomen. I scrounged for info for too long, stumbling across too many pictures of what happens when things go wrong. I felt better for knowing it wasn't nearly going to be as bad as my mind was making it.

Dad drives me to the doctor's. Knows the way by heart now. I'm letting him drive because the shifting bothers my shoulder a bit and I'm taking advantage of a driver while he's here. At the office, I give the receptionist the PET scan disk and the report and eventually get called in. He's happy with the results and asks what Dr. Szewczyk said about the two slightly lit nodes. I said she felt they were not a concern and he agreed but said they were something to watch. He checked my mouth and my scars and then asked if I was ready to get the tube out.

He takes the syringe and screws it into the port. He draws out the plunger. Nothing. He screws it in better. Nothing. He tosses the syringe and gets the scissors. No water comes out after he cuts it open. By this point I'm thinking, "Shit. That's 0 for 2. I know where this is going". So he hands me the horseshoe shaped bowl to catch whatever might possibly come out. My dad thought he was trying to distract me, but later said he doesn't think that anymore. So I'm looking down at the bowl he's handing me and it's almost like a sleight of hand thing because he's handing it to me with one hand, grabbing the tube with the other and then, before I can even turn my eyes to see what's going on, he's pulled it completely out, with exactly the gut-pulling, stomach skin-hole stretching sensation I was dreading.

It wasn't that bad. Just shuddery and cringy. Yeah, two totally made up words. In the big scheme of things, it was somewhere between getting an IV and yanking off my bandages too fast. Nowhere close to how the drain tubes felt.

My dad took me and Kevin's kid to The Keg, a nice steak place (sorry Livvy), for a celebratory dinner. It was pretty good. The server asked if we were celebrating anything in particular and my dad told him we were and explained about the clear scan and the returning taste buds and such. I told him that I had just had the feeding tube removed, and was celebrating that with food. He was very nice and congratulated me pretty sincerely. Said he had relatives who had passed because of cancer. A few minutes later the manager came over with a hefty slice of coffee ice cream pie. He congratulated me too and left us with the pie. My dad had some, but I ate the hell out of that pie. I swear I could taste the chocolate cookie crust.