Suedehead at Pre-Op

Why do you come here

When you know it makes things hard for me ?

When you know, oh

Why do you come ?

Why do you telephone ? (Hmm...)

And why send me silly notes ?

I'm so sorry

They say you never get over your first love--but in all honesty, you don't get over any of them. Joni Mitchell may have claimed me first, but Morrissey and The Smiths were there and ready for me when I went to college.

Today I had the prospect of an hour's drive to Indianapolis for a pre-operative appointment with no one else around--Yes! I drove myself, I had no need to balance my talking Ipad on my knees, all I had to do was listen to music. So sweet.

So I took a Morrissey's greatest hits CD, one I'd bought as an import in one of those record shops that no longer exist, I'm sure, in Greenwich Village. I used to catch the 2,3 out of Clark Street Brooklyn and ride express to 14th and then wander down 7th or 8th into Gayville. Sheridan Square, Ground Zero for my youthful ambitions. By the time I hit NYC, Chelsea was being called Gaymanistan--but that didn't matter to me. For people of my age, the Village was home away from home.

A hour silent of everything but Morrissey isn't, I know, everyone's cup of tea--but it was certainly mine. I loved his earlier solo work right up to Vauxhall and I, where I fell off the wagon of music in general and Morrissey in particular. It took me awhile to get over the 5th major format change of my lifetime in retail music--from singles to LPs to 8 tracks to cassettes to CDs to Digital--JESUS, how many times do I have to buy the same freaking album?--and my move back to Indiana from NYC was mournful enough without my dulcet toned manic depressive friend.

But today, as South Central Indiana passed by the windows, all browns and greys, stripped of snow at the moment, nothing would work but Morrissey, and nothing made me want to sing quite like "Suedehead." Now, is that a song I understand? not really. Do I like Jimmy Dean enough to idolize him and see the song as a homoerotic ellipsis? Nope, don't care--just simply like the song, and in early days, when I was voiced, I'd have lustily sung along with it.

Not that I can sing, mind you, just that I would--when alone.

Pre-operative meetings are like monitors into one's history--it's 45 minutes of what drugs you're taking, what procedures you've had, when you can eat and can't prior to surgery, an EKG, vitals check, risk assessment, and then 7500 other questions, some of which seem to come from left field during a completely random game. A nurse checks you, a doctor questions you, another nurse checks you out and rechecks you--then they send you off or onward--for me, to a chest xray and bloodwork. 

Have I mentioned how little I like any doctor's visits now? There's always so much set up and so little denouement. The plot is built and built and then, boom, plot goes shit and event is over. Everything in medicine seems set up to wrest the joy out of encounter and to take the encounter out of meeting. 

So, while all this was happening at University Hospital, I was mulling the lyrics to Suedehead, and what they mean. Honestly, I don't know. There's good argument to be made for the homoerotic angle, but what does that matter? I was imagining Suedehead while I was texting with people--some of whom it seemed were listening to it too, but they may not have known it.

I'm so tired of apologizing for myself, and for my circumstances--where and how I live, why I do so, why some event brings me joy--and today I decided that there'd be no more of that. I'm tired of that bullshit. You don't like what I'm trying to do for myself, don't respect how I'm trying to do it--ok, your perogative--but not your right to shit it out all over me like a blanket of blame. Go ahead, deal with it on your own time, and your own terms.

Suedehead is about to have his mouth worked on, and everything will be better for it not psychologically, but functionally, I hope to see pain lessen and discomfort ease up. The loss of the bone that was transplanted is sad, and I'm angry that radiation killed it, but there's not much I can do about it. I have mouth cancer so of course radiation had to be targeted to my mouth and neck--why, though why why why did it have to destroy so much? Why do you come here?  when you know it makes things hard for me, when you know, oh, why do you come?

Also on this import CD, is another great favorite, that I'll be listening to as I leave University Hospital with an emptier mouth--its advice is nothing profound, but a good reminder: Think of me next Friday, and play this youtube video https://www.youtube.com/watch?v=TFIanJS6fks&feature=kp

Sing your life
Any fool can think up words that rhyme
Many others do
Why don't you?
Do you want to?
Sing your life
Walk right up to the microphone
And name
All the things you love
All the things that you loathe
Oh sing your life
The things that you love
And the things you loathe
Oh sing your life
Oh sing your life

La la la la
Sing your life

Others sang your life
But now's your chance to shine
And have the pleasure of saying what you mean
Have the pleasure of meaning what you sing
Oh make no mistake my friend
All of this will end
So sing it now
All the things you love
All the things you loathe
Oh sing your life
The things that you love
And the things you loathe
Oh sing your
Oh sing your

La la la la
Sing your life

Don't leave it all unsaid
Somewhere in the wasteland of your head
And make no mistake, my friend
Your pointless life will end
But before you go
Can you look at the truth?
You have a lovely singing voice
A lovely singing voice
And all of those
Who sing on key
They stole the notion
From you and me
So sing your life

Small Surgical Steps (in new shoes)

As part of my reconstructive plans in 2014, surgery beckons. I need to close the enormous hole in my neck, and the dead bone and the brass fitting around the bone in my mouth need to be removed. Dead bone does nothing but attract infection--I hardly need more of that.

My recent discussions with the Indy surgeons who think I'm about 3/4 dead did reveal that they want to split up the procedures--and I don't mind. Well, I don't mind if no pain is still involved.

The first procedure looks like it's coming up on the horizon--this one, which they think might even be on an outpatient basis--is to remove the bone and brass from my aching mouth. This might alleviate some of the need I've had for opiates--a low dose patch, a bit of morphine sulfate, some liquid lortab and acetominophen. These things dull me a bit, though they occasionally make sleep much easier to achieve. On a tiny jolt of morphine, Daddy don't sit up all night....

All fine and dandy--but what you're not thinking of is the fact with nothing holding the jaw up, the jaw is going to slide downward--and yes, I'll look even a bit more hot freakish than I do now. The sliding skin will crush my voice box, which will be inexorably removed eventually--so any dream I've had of speaking again will officially be gone--along with eating. A crushed larynx doesn't accomodate a half pounder with or without the blessings of cheese.

There's no way for me to tell you how I feel about this because my feelings are all over the map--true, I don't want to look more freakish. True, I don't want to give up speaking and eating. Yet I do want some of the pain to go away, I want the infections to subside if they can, I want to get underway with phase 2. I want to deal with what I have to deal with--so I made a couple of bargains today with my future as methods of coping.

First, I went back to the well of coping which for me involves shoes. Don't ask why, I can't answer. I've asserted in this blog before that purchasing shoes is like purchasing the future--making a claim on being here, for the long term, for the life of a well loved piece of leather and a fetchingly masculine sole. That's as close as I can get to an explanation.

The shoes that are clogging my self pity machine are a pair I've had a lust affair with for several months. They appear on Gilt.com, from a Gilt company, Wingtip Clothiers. They are, as you suspect, wingtips--they come in cognace, navy (which looks pretty dark on my computer) and grey. I've looked at these so longingly so many times. I've talked myself out of them. I don't leave the house! What the hell would I need those for! Jesus those wingtips are beautiful!

I've waited so long that of course they don't have my size in all the colors--but they do in grey, and I've never had grey wingtips--and these babies have wood heal layers capped by a rubber bottom that just says--yeah, bitch, stomp in me. Live in me. Do it. And I will.

And, though I won't be speaking, I've decided to learn some Danish along with my French brush ups for kicks--think that sounds fun? Mange tak! or Mange tausind tak--many thanks or many thousands of thanks--from Lesson 1.  Hopefully at some point, my speech app on the tablet will have a Danish voice to buy (there's a Swedish one on there, Erick, and that might be close enough to allow for decent pronounciation, but I don't know). So I'll learn not to speak Danish as much as I'll learn some vocabulary and spelling of Danish.

I've never actually been to Denmark, but I did change planes at Kastrup Airport once on a flight to Amsterdam--it was my 40th birthday, and I'd always wanted to go to Amsterdam, being a fan of smoking cafes, good coffee, the Dutch Golden Age, and pea soup. I had a couple of hours in the airport at Copenhagen, which featured smoking everywhere you went, wooden floors, and the Cafe Karen Blixen, where I had some of the finest coffee I have ever had, anywhere.

On every best place to live in the world list, you'll find Copenhagen somewhere--so why not figure out how to tell the Danes, respectfully in their own language, that I think they rock ass all over the place? Why not learn to speak a language when the last thing you can do is speak it?

Surgery--never fun. Fate--frequently not fair. But I'm walking toward it in shoes that are seriously hot and I'm kicking ass with the tips of those wingtips. And I might even type a few choice words in Danish to express just how much I refuse to let this shit get the best of me.

The Deconstruction of Myth

To say that I have off days is to put it mildly: I can veer between barely contained optimism and Karl-style gloom on the subject of my cancer with the rapidity of weather change in Indiana.

I have tried, from day one of this journey, to keep an acorn of hope consistently and quietly within. Something that I don't express outwardly, that is just mine, a spiritual eternal flame. It has helped to have it, to allow it voice when I'm otherwise exasperated. A small firm and very predictable voice that is good to hear.

Wild voices take over when bad heaps on bad like a bum offense bounced on its ass by an incredible defense. I, ashamed as I am to admit this, once sat in a doctor's office and said: "I wonder why god hates me so much." And it felt good to wallow in it, just as joyous as the squish of cool mud to hot swine. I swam in that muck that day and I can see it clearly, can see the consternation on the doctor's face who was probably dialing the suicide hotline in her mind as a just in case.

It's a dumb thing to say, especially if you don't believe in "god" as a singular concept from which all flows. It's dumb enough if you do believe in that god. I have expressed the same idea using "the universe", a neo-atheistic code phrase that a sufferer who doesn't believe in a singular Islamic or Christian god-head, but doesn't know what else to believe would use. I liked that one--and when I used it in San Francisco it did seem that I fit in a bit better than I would otherwise have believed. I am hippie, hear me equivocate.

Suffering, my young Methodist self was taught, was a by-product of sin. Touch your penis? Suffer. Curse your luck? Suffer. The point was to recreate the world into a predictable pinball machine--if you aim for virtue and miss, well, at least you aimed in the correct direction--your punishment from the cosmic machine might be that your school lunch milk was soured. True sinners though paid big. They fell from the monkey bars onto the asphalt and broke bones. Their parents divorced. They scored the skin from their feet with lawn mower accidents.

That old scorecard flashes up at me every once in awhile. I know my sins pretty well, and the one area where traditional Methodist cosmology and late 20th Century cyncial Earth-based evolution-theory-tinged guilt come together well is the interpretation of right versus wrong, good versus evil and well-intentioned versus ugly self-serving selfish bullshit evil. They seem almost indistinguishable at  times. The only difference is no jesus in one and no mercy in the other.

I do suffer sometimes. Like today, my mouth really hurts and the pain meds aren't cutting it. If I sit quietly, it's just a dull roar to me; if I move about, it seems so much more concentrated. The problem with sitting quietly is that I tend to think loudly at those times--and I do wonder if I've punched the cosmic payback machine for triple time with this cancer. I cannot speak or eat, two functions that are so taken for granted as to be wallpaper in our lives.

There is surprisingly very little thought given in doctor's offices to dealing with patients who can't speak. Even nurses who deal with me on a constant basis will tell me to call the office for A, B or C, ask if they can call me to discuss a test result. Try getting them to email or text--oh hell no. Those activities might compromise my privacy and lead to a lawsuit, though the last I heard of it, dragnetting cell phone calls seems to be just as easy for anyone who truly wants to know my last postassium level reading. I'm sure the NSA is not wringing its hands over the possibility that I might read my next appointment time--they've already logged it from the reminder phone call. The verbiage and bits would simply duplicate and clog an already burdened system.

On a sunny, beautiful day like today I wonder if I'm the sun or the snow it's bouncing from--if I'm the shade that protects or the eye that gets the glare full on. I conclude too easily that that I'm the latter in each example--and without any proof that I'm stuck in the payback machine that was magically produced from a dissolute life.

I do bad things but I don't undo them. I relive them. I find them in the middle of a dream I'm having where underwear models find me irrestible. That frog I killed for funsies when I was kid is still floating by me in the creek--and I still feel the moment I killed it and knew that was truly a wastrel horrible thing to do. There are things I consider worse, and too personal to confess, but trust that none of that has left me. These are the quarters with which righteousness is pulling the lever on the one-armed bandit that is dedicated to making me suffer for my awfulness. Today is simply a three cherry day in the casino.

Do we suffer as a result of what we've done? Of course we do--just as we exult from the results of what seems good and true and honest  within ourselves. The awful truth that guides both missles to their target is that these armaments are home-grown, from the same factory, and equally misguided. To do well in the world should be an unconscious act, one that simply grows from the goodness of one's soul, intentions, outlook upon the equality and dignity of others. To do evil is to simply place the self above the good of all other components, no matter the argument against that act. To exult in the first is to indulge the outer limits of the second. To wallow in the second is to ignore the impulse to improve that is provided by the first.

To refuse to see that biology is guiding the real missle through the system is as sinful as being willfully stupid to the suffering of others. That cancer is the enemy, not the self, not that self's history. Any time the acorn of hope is overcome by the noise of the doubt is a moment of evil--the true fight is the effect of higher thinking, beauty and love against the machinations and grind of pure unthinking physical biology and chemistry. The universe within doesn't hate anyone, but it can be highjacked to produce some ugly results. That's what's making my mouth hurt right now, not the fact that I was an asshole to Susie Kemery in elementary school.

Myth though is powerful--and why shouldn't it be? It has a story, a history, place, character, and like the best of fiction, a plot, a motive, a raison d'expliquer. It offers a bit of dignity to one's worst impulses to dress them in these ancient robes, to participate in a Greek drama where chorus, protagonist and villain are economically cast from one actor. Someone recently asked me to remember him--I'm very unlikely to forget. I'm still spouting lines from the play that was written when I had sex for the first time, and I'm still wondering how much pain I've got left to pay for the lies I told my parents. I wonder when the real ball will drop on my head from the 90's--I pulled a lot of shit in that decade. My psyche is writing the torture monologue from these more recent remembrances as we speak.

Doctor Number Two

In the race to dig my grave, unfortunately, doctor #2 agrees with doctor #1.

One of the worst habits that doctors have with me is speaking past me to the person who has accompanied me to appointments. In this case, Charles drove me to Indianapolis to this conference with Doctor 2 and happily sat in on the appointment proper. I did not, I promise, force this upon him.

I'm not sure why looking me in the face or addressing me directly is so difficult for some doctors--true, I can't converse--but I'm a pretty decent typist and I don't spare my rich vocabulary to dumb down for the sake of a keyboard. I have the conversation with that piece of machinery that mimics closely what I would say spontaneously were that possible. No, Doctor, I am not stupid.

It's probably nice to be able to tell someone you don't believe that their lifespan prognosis deserves your full efforts if you don't have to say it to them directly--you can look across the room at someone whose reaction by nature can't be so personal. I kept interjecting, and the doctor kept looking elsewhere--no sir, that metallic machine voice you keep hearing isn't coming from Charles--look over here.

I made every effort to be polite because I don't have a backup plan for surgery, for closing the hole in my neck or making any progress in living better. I still don't--yes, they will remove the dead bone from my mouth, but they'll allow the chin to slid into my trachea and make me even more freakish than I am now. A prosthetic device? They are very expensive! Who knows if I'm worth that much effort considering I'll be dead with 24 months!

Except, jackass, I won't--sorry, I'm just not buying it. Here's how I figure it will go down. I've kept on moaning about the miracle I've never gotten. I'll have to give up speaking again and give up eating again--but what if the miracle I get is that I'll live well past this timeline they propose I'm on? That's a miracle I'll accept--even if my stupid face is sliding off my bones and is located somewhere near my clavicle. What the hell. It's not like I'm running for Miss Universe.

Then, maybe, will Doctor 1 and Doctor 2 apologize for treating me like a barely containable piece of trash? No, likely they won't--but even more likely, they don't recognize that they have done so whatsoever. Doctor 1 won't recognize that pulling his punches in my fight against cancer was wrong and Doctor 2 won't see that speaking past me and down to me were the two stupidest moments of his life.

It's not like I haven't seen this before--even in the self-possessed paradise of San Francisco, where self actualization on the scale I can demonstrate is considered more important than Jesus, I faced similar treatment. This must be on the curricula of ear nose and throat rotations throughout our nation's medical schools. Cancer makes its victims retarded--don't forget to treat them that way.

Proof, shouts the Empiricist, is what is wanted. Unfortunately, that kind of proof, the kind that will work in this case, takes time. Not 25 months, not 30--but longer--48 months, 72 months--something like a typical car loan life span for me to say "I told you so" and for them to retort--"yes, but it's coming up..."  I may never win.

So, fight on I must. And as the best fighters soon learn, Rambo's illusory lessons aside, it takes allies to actually win. I have to identify those people who believe as I do who are in this system and can advocate for me. I'd like to think my new oncologist is one of them--but I'm just going on feeling for that one and can't yet tell. If beneath his Crocodile Dundee facial hair there is a guy who's willing to bet on me, I'll be willing to let him do it. Again, though, time (and observation) will say more than I can say right now.

Otherwise, it's cold here, snowy here, but I ordered 5 new pair of pants in a size that won't automatically slide off my ass. Can I make my optimism more plain? It'll take several washings to get this puppies into comfort mode, so I at least am looking good for the next few months--and I tend to keep clothing for a long time. All of that should bode well.

And I have plans for these pants--Spring gardening, I hope. Charles had no time when I was gone to work on the flower beds I left and they are in sorry, sorry, shape. I can't do a lot at once, but a little each day might revive them. By the end of the summer I want a huge blooming statement to say I haven't wasted a moment of sunshine. Then again, I am an optimist.

Those potato chips and that dip are killing me

I feel sorry for people who eat in front of me. Inevitably, they feel some level of guilt no matter how much I assure them they needn't; I understand. I used to like potato chips and dip occasionally too.

This was the classic small guilt trap Charles fell into yesterday, trying to hide his chips and dip in the kitchen as he made his dinner. He didn't reckon with my nose, grown more incredible throughout this ordeal, responding to the genie finger of the dip's lovely bouquet. There was the expression of sorrow, the response of un-necessary, the usual give and take for me.

I have, over the past year, planned for a return to eating food, and held it out as a personal goal. I have been not-so-gently disabused of the fantasy of any return to normal eating though. In fact, I have been somewhat not-so-gently disabused of virtually every fantasy I've held important over the past year.

In planning for the next surgery, the surgical team's first response here is not encouraging. Yes, they may be able to close the big hole in my neck that has opened up, and yes, they need to remove the bone that radiation killed in my jaw, the sweet little transplant that withered in the pulsing rays of cancer killing.

Yet, no, there is no plate they can put in as a holder, and no one (including me) is excited to harvest the bone from my left leg to replace the dead bone. With no bone in the jaw, my mouth will eventually push down and crush my trachea, meaning I will never eat again through that hole, and never breathe again without this stupid tube in my neck. I won't speak, ever again, so the only way you'll hear my uniquely snarky voice is to imagine it plastered over the more radio ready voice of Ryan, the sound my Ipad "Speak It" program makes.

I could play the voice on my new phone, but right now it's a particularly breathy woman and I can't figure out how to change it.

All of this bad news came with the caveat that the surgeon had to consider how much to do for me considering that people with my metastatic profile had a 2 year survival window post cancer spread. 2 years! Some of which I've already used up!

Yes, friends, again there is someone calling time on me when I hardly feel as if I've started fighting. True, this time it's years instead of months, but still--come on. I keep telling these game enders that I intend to keep going and they keep smiling at me with that poor fool smile they save for people like me who are deluded. Yet I'm not! I'm not near ready to leave, and further, don't feel like that's even in the cards or present as an option.

if I only have 2 years survival, and I've already run 7 months after the ending of my first phase of treatment, shouldn't I start having some indication that I'm dying? I mean, really, is that too much to expect? Instead, I keep finding reasons that I think I'm going further, that I indeed will make it to my goal age of 70, accepting anything beyond that as purely gifted.

I keep seeing Spring or at least the possibility of it, and I keep smelling french onion dip (now made with greek yogurt which Charles assures me is quite good). It's not simply intent--it's truly the smell around me, and the sight I see.

I don't blow off the opinion of experts entirely--I could just be entirely wrong--but I'm not!

Charles was nice enough to remind me that I heard the opinion of one person, tomorrow I'll hear the opinion of a second. A doctor of my original team too and likely to agree with his colleague. I understand the importance of empiricism, without which I'd likely still be living in a Cotton Mather colony and burning unfortunately interesting men and women as witches.

Empiricism though does not explain what chips and dips do for me, what a hamburger means. It has no notion of the importance of seeing who my great-great niece marries, which I hope will require at least 15 more years to find out. I am curious about pop music--when will auto-tune lose its uninteresting hold upon us? Will it be 2020 or 2025? I don't know about you, but I can't wait to find out.