I can almost taste that

Sometimes, when I miss eating food too much, I open a jar of peanut butter and take three or four deep breaths. I live on the fumes of today and the faint aroma of yesterday--and I think of how I mindlessly ate my last peanut butter sandwich and kick myself. This usually works for a couple of hours.

I have been experimenting with what other, more punk rock tube wearers have suggested I do--just grind everything to a faree-thee-well, mix with a lot of appropriate liquid, and shove down the g-tube.

A few days ago, I made a meat loaf for Charles--meat loaf is a great dish to make when left overs will become important--for him, a Catholic music director in the midst of Holy Week, a dish that can be warmed up and eaten at will is a lifesaver, or at least a McDonald's-saver (just kidding, Charles would gnaw a sloth claw before he'd eat at McDonald's!).

Wouldn't you know, even given my long, illustrious, career of making meat loaf, this one was perfect. The onion was sautéed perfectly, the garlic left a beautiful impression along the spine of the meat, a dash of cumin, the slightly more liberal black pepper, the decidedly more liberal cayenne, the devil-may-care dashes of Worcestershire sauce! Ah, the smell!

The meat loaf with it cartoon come-hither fragrance...I had to have it. Had to! My problem with the punk rock approach to eating with a feeding tube, though, is that my blender is decidedly better for Hootie and the Blowfish--it can make a smoothie, but not the smoothest, it can do protein shakes, but you know there's some banana lump in there. It doesn't not make the type of consistency that an incredible small feed tube can bear, or even let pass.

Yet, there are times in your life when sense--well, what the hell is that? It happens to me at odd moments. A pair of brown chukka style Varvatos shoes with a wing tip design on the toe? Had I not bought them I'd still be crying. A t-shirt that says People's Republic of Portland? Would not rest until I was wearing the Commie Star. Having a dessert at Cafe Lalo (83rd, between Columbus and Amsterdam--famously included in the wretched movie "You've Got Mail" with dog-haired Meg Ryan and basset-hound-faced Tom Hanks) every time I'm in NYC? Try not to take me. The bitch juice starts flowing the moment of no.

You know of course what I did--I could stand 1 1/2 days of the torture and that was that. If I were Jesus in the desert, this planet would be shot and you'd all be slogging through hell fire laughing at babies carrying switchblades.

To the underpowered whir of my mixer I added the only meat stock I had--chicken--until there was a vaguely greasy looking beige liquid in it. This, I began to feed down the tube, and surprisingly, it worked--or it worked for about half of the production--then a stray piece of beef hit a filter and ka-pow. The show was over.

Surprisingly, I can taste--there's some buds left in my mouth, there's a strip of tongue back there somewhere (not 100% of my tongue went--something like 97%). And the great steam pipe of the esophageal tube releases a sort of exhaust that indicates, teases, and occasionally delights what buds are left.

The meat loaf, at least its essence, was indeed perfect. I cannot underestimate, as a Midwesterner, the value of knowing that the loaf one has produced has reached a zenith, an ultimate expression of one of life's perfect foods.

Ah, but the clog. Equally allow me to assure you that you cannot live with a clogged pipe in your house, and I cannot live with a clogged pipe to my stomach. The Heloise method of clearing clogged g-tubes? Coca Cola. Yes!  Nature's best window cleaner and all around frightening thing to put in one's stomach is also the number one unclogging agent, suggested and loved by all--except me. Until I had a tube, no Coke has passed my gay lips for literally decades. I would rather destroy myself piecemeal with chocolate than go straight for it with something that could bitch slap my gastric juice and eat through my stomach walls at will.

The upshot is that the Coke worked--pour acid on sheet metal and you'll get holes every time! But it worked on me too--and here is my new pledge to myself:  Not until I have an incredibly powerful processor or blender will I try to eat any  meat product through my tube. Not because I don't want it but because the Coke is so not worth it. The bloat and stomach ache are not what I wish to add to my stock in suffering.

Lately, I have tried to be proactive instead of whining, and to be a sport instead of a spoil. Truffles mixed in milk and hot chocolate, eyeing a Cadbury cream egg as a potentially creamy little spot of no-nutrition goodness...a tablespoon of peanut butter mixed into Nutren (it slows it down considerably) was worth it for the after vapors....peanut butter clouds rising and raining a soft sweet peanut  butter essence throughout my mouth and throat...if that sounds vaguely sexual it might be and I'm sorry to skeeve you out. P butter has been a constant in my life from my early memory forward. We cannot be forever parted.

I have promised myself that I will, at some point, go to a restaurant with Scott and Terry and be a jolly companion. I'll watch them enjoy and enjoy with them. I'll go as hopped up on Nutren and whatever Scott's blender (better than mine) can concoct to delight me. Perhaps we'll go to Chow in the Castro and I can watch Scott have spaghetti (have seen this twice, it's adorable), and if Terry is so inclined, their lasagna that I inhaled when last there.

Or, at K Pop, I can see them taking those aromatic meats and pickled side dishes and enjoy the corner windows looking out onto nude accordionists, disability bears and tourists gawking at them both. We'll watch neighbors kiss greetings and pick up artists and Sunset gays come back down the street for a good slumming in the ghetto. Then, full and happy, head up the big hill to the top and call it a night, and a tasty one, at that.

First Fate, then cancer

In late 99 and into the first years of the 21 century, I was in grad school at IU, having returned as a late student; another point in my life where a serious medical problem had grounded me, and brought me new challenges, new choices.

I was in the MIS program--and truly I'm sure I never belonged there. i loved the literature, I loved the theories that grounded the design process, the look and function of a page, I loved contemplating whether a gazelle was a document. To this day I am a Jacobsite thanks to Elin. I'm a baum of e-commercial theory because I've been to Howard's end...and those references will only make sense if you're a Hoosier Slizzard.

In my free time, I would chat on the relatively new Gay.com--their chat rooms were woolly and wild, lots of guys from all over, usually looking for sex and filthy chat, and all sufficiently far enough away and either cognitively or keyboarding challenged enough to be no threat to me, or my relationship with Charles--of course, there is always someone who stands out.

I first met Scott online, and we had a quick chat rapport. Enough that i would look for him and engage him anytime I could determine he was online. His avatar photo was frustratingly small and all I could figure was that I liked the color of the wall behind him and the bank of windows I could see, What he truly looked like, though, hardly mattered. He had that quick wit and suitably self-aware sarcasm that I truly love.

Over the period of a year or so, perhaps a bit longer, I typed a hell of lot of conversation to Scott--and he to me. I remember the topics as broad, far ranging, a lot of poetry--we quickly found that we had the lit thing in common, had Dickinson in common, loved Plath in common, were affected by poetry in common--let me just shorthand and say I was so seriously interested in him! It became part of the day's highlights to talk to him.

But I was in a relationship.

Nothing happened, but depending upon your definition of cheating, it did--I mean, I started to have an emotional connection to this faceless guy, a thrill to the work of his mind--Scott was the first guy who completely understood with no background information why "Lesbos" could be my favorite Plath poem! About 100% of the rest of the world just said "huh?" whhhhut?

We lost touch though--and there are various reasons for that--the one I remember is that I could see nothing was going to come of this online relationship and I was putting a lot into something that would never be anything...I was ready to keep myself engaged in reality, not fantasize away on possibilities. I'm consistent this way. I have no problem daydreaming twice, but if it doesn't come true by the third time, I'm completely no longer about it. It's--whatever it is--over. That was about 10 years ago.

I didn't realize that late 2012 was going to be such an incredibly eventful time for me, but it was--my relationship of 16 years ground to a halt; not a bad halt, but halt nonetheless. I decided that, given that being nearly 52 was akin to being a corpse in the dating world, I'd have to join a site that engaged people like me, who had had my experiences, might possibly think as I do, or at least not care that Lesbos is my favorite Plath poem but not disdain the choice--or the fact that I HAVE a favorite Plath poem--at all. I tried to keep my expectations in check.

Within a couple of weeks of joining I was idly looking at profiles one night and there was one that lept out at me--a guy in San Francisco. Now, frankly, that was no recommendation given that I live in Indiana--and a gay guy in San Francisco is--to my mind--like meeting a glutton who lives in a bakery. I might be prime time cake for a guy my age, but it's hard to compete with the 600000 of them who live in San Francisco.

But I looked--and liked his picture, and his description, and found him interesting, and went on. Telling a guy who lives in SF that he's cute is like telling him he can walk--he's heard it before.

On this site, if one is a paying member (and both of us were), you can see who has looked at your profile--and I could see that he could see that I had looked because he looked at mine. But no message--typical SF guy! Can't see that geography is just a fact! Ah, well, so what....

But the day after, there was a message--just a fateful one--asking me if perhaps I used to chat on gay.com under this username--and I did, and that one small message is how we reconnected.

I'm not a guy who believes that the universe is made of rules and laws. I believe that behind any apparent structure and rationality there's a buzzing fetid soupy mix of magic and fate and karma and kismet and chance all banging into one another, throwing off sparks and starting fires, destroying and recreating. The universe I live in is--while not god-headed--a place where any god I've heard of might enjoy a home. Ultimately, I believe in something but I believe it's far too hubristic of us--any of us--to pretend we understand what that guiding intelligence is.

Do unto others, stay to the right, share your cake, do well when you can, act well when you're able, give when you're uncertain--those rules guide me.

When I look at Scott now--7 months later--that's what I see--all of those quarks, sparks and circumstances colliding into one big message--second chance idiot! second chance!

I know now that during virtually all the time we've had together that I've been sick--and most of the time didn't know it. That we began under the oppression of cancer but I thought I was free and healthy. I broke my push up record at 350 in one session! I was jogging in San Fran when I visited, though I couldn't abide running outside in Indiana. I felt--I thought--energetic, except for the funny problems I kept having with my tongue.

The fact that he was there during 18 hours of surgery tells me that he knows how that message from the universe went, too--though he tried to pretend at first that he didn't. Briefly. Once I've made my mind up, I'm a difficult man to say no to, nay, rather impossible, When I know, I know for you and me, Decisions and effectuation come easily to me, I'm a Scorpio. We don't eff around with this stuff.

Fate, then cancer. I think I couldn't have asked for a better way into Cancerville than to hold someone's hand as I walked in. Who knew that it would feel good to offer to NOT hold someone to their promises of love only to have them grab your arm and walk into the Cancer metro with you. Scary though that walk is, I've promised in return to get us the hell out of here as soon as I possibly can.

Everything I do aims to accomplish just that. For both of us.

The Luck of the completely non-Irish (Part 2)

(Note: for some reason, typing this on my Ipad, I reached a point where the page refused to advance as I typed, so I couldn't see what I was typing, which is not usually a good way to go about this--thus, part I and part II)

One problem I have right now is that I have time to think, and that is not always good. And thinkers are, after all, not always doers. So I've been attempting to blend the two approaches--to not go off half-cocked as doers often do, and not refuse to cock the gun of doing, as thinkers are want to act.

But how do you know you change your perspective and  your actions when you're isolated at home? Good question--and my answer is to look to the small things and integrate them as I can.

I've semi-resolved to stop being such a whiney bitch about eating--allow me to assure you I can't quite give it all up; Scott sent me a message yesterday from lunch at Super Duper Burger in San Francisco and I wanted to die. In case you don't know Super Duper Burger is the best damn burger in the world, and I would do vile things in order to have one. That, I will always whine about.

I know I'll be back to eating--it just won't be now which is what I want. Now, now, now--the hallmark of the supercilious special. The idea that waiting and patience are not fit for those who sneering take on modern life renders them too damn special to live it as the rest of us do. You know them. They board airlines out of turn, they push forward to deplane before any other row--no matter where they sit. They sigh loudly when forced to spend 30 seconds in a 10 items or fewer line. Those people.

Theoretically, the back hand luck that I and the Irish should be famous for may be our saving grace from this type of life and attitude, from this refusal to be part of the world, and of the world, and not above it. I'd like to think that I can convert my close encounters with the rough reality of bad health and poor outcomes to a fuller expression of gratitude for just that type of luck.

I decided to express my gratitude this afternoon when I walked to the store and bought dinner to make for Charles, who is stuck in Catholic Holy Week hell, with many hours of music to plan, perform and supervise.

I expressed my gratitude by taking two of the truffles Scott brought back from Switzerland for me--beautiful, expressively chocolate truffles that I've pouted about not eating--and making the most expensive glass of chocolate milk that has ever graced a feeding tube. I find that I can make out the flavor of things I feed into the tube in the back of my throat--I can sense the vapor I guess--and this chocolate--even second hand--is madly good. Thank you my very dear Scott! Let me not bitch that gift horse further.

To be clear, cancer is a buzzkill. I felt far happier when I was thoughtlessly popping M&Ms in my mouth, right? I was a better person when, without knowing what this experience was like, I told my mother that anyone who lived long enough was sure to encounter cancer--I mean, that sort of dry sympathy is just what she needed wasn't it? It was good enough of me to say fuck that the last time I didn't win the lottery--isn't that normal?

Yes, all quite normal, I'm sure. Which is why I, and my perhaps my Irish friends, should understand just how lucky we really are.

The luck of the completely non-Irish (Part I)

As far as I can discern, there's nothing Irish about me, either background-wise, or in my choice of draughts and ales. I think that a tall room temperature glass of dark brown whatever-that-is in a pub would gross me out. I have nothing good to say about corned beef except that it seems to ruin perfectly good cabbage.  Only certain greens look good on me...

But I possibly share a certain proclivity to luck with the denizens of that island, if indeed there is such a thing as the luck of the Irish.  The kind of luck that looks bad, but hides a resilience and everlasting gift for survival underneath.

I've been to this dance before, by the way--I've been sick, incredibly sick, very close to death on two feet sick, and have been pulled back from the brink by modern medicine, by my own wits and desires, and my sheer determination to not die a mere statistic. And I harbor all the conditions I could want for a serious re-occurance of prior problems, and this cancer, as early as today and as late as tomorrow.

I don't know how that is--my brother in law calls it our family's spectacularly bad genetics--and he certainly has a point. Most of the horrors of life-ending spectacularly messy medical trauma are hardly one degree separated from me. I can look to my parents, my sister, my brother Matt who dropped dead of a massive coronary at 44, my oldest brother, to see it all in action, or in recent action.

No one thought the potato famine was luck. No one assumed that the pokey economy of a far western island would ever boom. No one even thought the Irish capable of home rule until rather far into the 20th century. Luck? Their luck was didactic only to English sadists, and to no one else.

But they survived. And in the great diaspora, likely deepened the gene pool, developed new avenues of endeavor, became Presidents, poets, singers, politicians, managers, bosses, etc. They brought back to a place that had been far too isolated new ideas, the seeds of a government that would be guided by humanism as much as catholicism, a commitment to human rights and dignity that has given us, among others, the great Mary Robinson.

That's really the kind of luck I've always wanted to have--as I've called it before, the good side of bad That luck is deep and abiding, and the fact that I think I share it made the 3ams in the hospital when I was alone, when it was quiet and dark, and I thought I felt myself being attacked by cancer and slowly killed by it just as risible as those dreams where I tap dance--because I decidedly do not--in reality--tap dance.

That luck speaks to me of the way I want to live, the expression of which I'm moving toward slowly, every day that I can.

Without being Hallmark about it, I want to start living in my own culture of yes. My own new openness. I'm tired of bitchy, negative, "clever", shitty ways of expression and encounter. I want something better for myself--something less toxic and overall cleaner, simpler and nicer. I'm considering going back to the rules of Kindergarten where one said nothing if there was nothing good to say. I'm also incidentally way into naps these days too.....

I think too often we overlook the type of luck that allows us to look squarely at the life we've had, and without rancor, try to make it better--luck that allows us to be here and do that sort of work that while necessary is not always perceived as needed.

It's easy to go through life as a critic--one who relentlessly tears down but creates nothing better. I'd at least like to go on record and say people like that suck, and I want none of them in my life, and don't want to affect to be one--too smart by half for everyone else, too good for any situation, too special for any emotion.  There's no luck in being an asshole. That's a broken quality that speaks to no such luck.

Post Doctor Note

So, my follow up visit with Brigance went well enough that he's on board with some San Francisco treatment! Radiation and Chemo in the City by the Bay!  Woo Hoo! Now, we just have to make that happen.

Doing so will take someone with indefatigable dialing and speaking skills, someone to whom no mere phone mortal may say NO--yes, that's right, Scott's going to be calling around UCSF to get me a consultation, and get this treatment plan set up. The urgency is predicated upon the cancer fixing recipe that 6-8 weeks after surgery, the follow up treatments have to begin for maximum efficacy. And that is what we want.

The bad news from yesterday is that there's still a trach tube in my neck--there's enough post surgical swelling in my airway that the doctor wants a secondary system during radiation treatment when swelling can further occur. And I can't disagree with that--much as I want to.

Yesterday, for all my whining, nobody gave me a hamburger. Dr. B just kindly and patiently explained that as I lost virtually all of my tongue, I have nothing with any muscle or control to help me guide food to my stomach and away from my lungs. I hate facts. But hey, he told me I could have 8 Nutren a day if I'm hungry! Now that's a gentleman.

As for me today, I'll be writing to my case manager trying to arrange that the equipment I use here magically will appear at Scott's, too. And those cases of Nutren will get to his elevator for (fingers crossed) easy delivery. That's one of the challenges of living on the top floor of a small apartment builiding on the side of a big hill. Cross fingers, elevators, that sort of thing.

For 4 weeks, I'm on official interdiction of lifting anything beyond 10 pds. Have I done it? Yes. Should I have? No. Is there a reason for that? Yes.

Now, I have to figure out how to get on a plane with a couple of tubes of Nutren and a couple of stray tubes, a cane, and a big smile.

In a Glass Darkly

Much of the jaw I was born with is gone and in its place is an artfully bent bone from my leg. That then is attached by some sort of medical steel or titanium to hinges that are now my jaw and upon which my future hopes of eating and speaking rest. Right now, my mouth and jaw are odd, to be nice about it. My lips feel as if they have cramps, and are just working out how to operate-the bottom lip is swollen, the top is recessed as if I were half siliconed Hollywood starlet, half Jethro Bodine.

Anyone who knew me before would know me now--but of course it would be obvious that something was amiss. They'd see the swelling on the left side of my face as abnormal and the contour on the right--depending upon their intimate knowledge--not quite as was. I did ask for the Brad Pitt look--I mean come on, 18 hours of surgery? I should be able to look like anyone after that!--but I will end looking somewhat Mark Price-ish.

Nothing wrong with that--ostensibly when I look in the mirror that's who I'm looking for in the roundest sense. The idea of the person who was carried forward in the augmented guy who is, and the look to go with it.

I have avoided a lot of mirror time. Some of what I see is painful to me to look at, though I do have to shave. Now that's fun--a lot of my lower face and jaw are somewhat numb-ish, and shaving numb skin is sort of like petting a dead stuffed dog.

I have at various points of my life contested the idea that I'm vain. Mostly because I've never thought I was that spectacular looking to begin with, and rarely have I ever been able to uphold the sorts of regimens typically associated with vanity. Brushing my hair bores me, so I keep it short. 5 step skin regimens scare me, so I use soap. The idea that I'd rub product x into my face in the morning, product y during the day and product z at night seems a prison sentence.

But vanity comes in more forms than simply consumer-driven obnoxiousness. It's surely, too, the desire to never slip from the perch one occupies on the attractiveness ladder, wherever that happens to be; it is the hidden mathematics by which one calculates social value by how many heads turn at room entry or not; too, it is the calculation over time of capital depreciation, of how one head turning when you enter the room at 50 is roughly equal to 12 when one was 25. It is the fact that one thinks of this crap whatsoever.

I am vain, then.

Because vanity is thinking of the self before, say, the suffering of one's fellow man, it is surely the least attractive quality of our social selves, but the most common. I grew up surrounded by the idea that one should not be vain, but I was  given every example of how we are, simply by nature. In my later teens and twenties, too, I heard about how horribly vain gay male culture was, and how shallow and horrific and judgmental, as if it stood alone outside any other in viciousness. Hardly.

If I'm seeing in a glass darkly these days it's not because I'm gay. I utterly reject that line of homophobia that claims gay men as unique purveyors of this sin. I'm vain because I was trained by Proctor and Gamble, among hundreds of other companies over thousands of hours of commercials to distrust how I look what I think, the packaging of my self, my face, the play of my emotions. I was drilled by my father on how not to cross my legs, what a sissy is, what a man isn't. Every impulse I had as a person was microscopically examined for what was wrong with it, how it didn't fit and why it wasn't good enough.

Our culture is a vanity trap. Most cultures are.

Even Amazonian tribes rub mud circlets on their breasts and thighs just so to attract fecundity or emphasize fertility. In the absence of mirrors there's the rough glass of sexual choice to make an upland tribesman in New Guinea feel hot. That, and his ability to snap the neck of a forest boar quickly and efficiently.

I'm thinking of all these things this morning as I'm rubbing my hand over my right cheek and trying to figure out how long it's going to take before I look as I did. I'm aware when people look at me what they are looking at, and how long they look at it. On one of my first outings with Scott to the grocery store, someone bald face stared at me and I thought I would take my cane and beat them until they couldn't see. Luckily, my energy was being used up in the art of motion, not the art of the social beat down.

I would think it easier, overall, to emerge altered from surgery if one is coupled than not--but in my case, I don't know that to be entirely accurate. I worry that Scott comes out of this deal having committed to Don Juan and then finding himself emotionally chained to Quasimodo. That algebra comes directly from the movies, I suspect, or the plot of some god-awful movie of the week I was too lethargic to turn off. One that impressed upon me that value is 2x looks if x=true love and y is =true choice.

Luckily, I chose someone who liked my brain as well he enjoyed the angle of my nose (veers slightly left, naturally). Someone who is quite ready to deploy a far higher calculus when I try to argue the stupid mathematics that vanity pulls out of events, and usually the negative, and usually for the worst of reasons.

Yesterday, my niece changed her profile picture on Facebook to one that has a guy in it, pre-surgery, who I know. His hair, a bit too gray for my taste and his face, a bit too florid for my preference, are familiar. He may very well have been a looker in his time, but tsk, what time will do to one of those. One has to hope that, going forward, he has reserves of love and awareness of self to rely upon, because he is not going to be conquering any worlds looking like that. Or is he?

Present, and accounted for...

In the past few years, most of my pleasure reading has been in history and biography. Nothing obsessive, but I've trolled the British royal and social history for a bang of entertainment, France for edification, Russia because Orlando Figes is one of the best historians writing today, Italy because of the Risorgimento, Spain because the Reconquista is so much fun for people like me who cheered the accomplishments of the caliphate, Greece because it's Greece, and Turkey for the Hittites and the Byzantines and the Ottomans and the myriad other reasons it fascinates.

I went at this reading at the expense of literature, explaining to myself that the world that George W Bush was creating around me was so grim and ugly that I didn't want to get lost in fictional worlds--I wanted to understand the antecedents of this one--how we could possibly have come to such a flaw in leadership, such a lack of will, such a paucity of compassion.

I thought I would turn back to literature at a certain point, even get over my disdain for contemporary writing and give up my obsessive re-reading of the classics to understand the world of the new--I thought that project was coming my way. Obama, though not my choice of leader, seemed to presage a weltanschauung more closely aligned with one I'd have. Outside of a few murmurings of my general equality, etc., I've found his administration more Bush III than not. And my lit project yet to take off....

I could be faulted for taking too much of the problems outside my head on, and allowing them to control my agenda--or I could be faulted for excusing my lazy application by reference to world events, thus inflating their sense of importance out of proportion to their real application--I mean, will the world really suffer if I don't read Michael Chabon? Of course not. But sometimes the world is just here, just personal and just you and me.

In cancer time, I've read (literature, history, biography-wise) virtually nothing. I've taken no solace in any book and not hidden or delighted myself with anyone's virtuoso voice. I haven't uncovered any truth in antecedent time that illuminates my struggle or the world  in which it takes place. My reading has all been of the now and present--politics, blogs, newspapers, gossip, celebrity sightings, cancer boards on the net, doctor reviews, and entertainment videos from Hulu, Logo and Lifetime TV.

At first, this really bothered me. I figured I was become yet another sponge that could be parked in front of a television and entertained with the adult version of a Monster Truck. I figured I was just a step away from discussing characters on sitcoms as if I knew them and they had agency in my life--"that Whitney! how she talked to her husband!" or "what if the rose goes to the slut? Will he marry that bitch?"

It's not that bad, I'm happy to report.

I began to realize, slowly, as Scott and I discussed re-reading "Mansfield Park" together that what I want isn't in any book or television show right now. Those are just gloss and floss. What my mind is looking for is to connect with the now around me. To observe, to delight, to disdain and revel in what people do. I want to know what normal looks like, and observe how people eat. What they choose at the counter of a Starbucks, why they stop at McDonald's, ever.

I feel like perhaps I have no idea who other people are and what this experience has brought home to me is that I do actually want to know more about them. I bore myself. I bore myself enough to host a bunch of killer cells--maybe it's time to learn from outside in, and instead of judging from inside out.

What I like, right now, is the voice of other people. Not necessarily the one you hear but the one that is revealed in how they do things, in their apparent choices, in where their point A was and how I encounter them at point B or later. I want to fill them in as puzzles, but without supposition. I want to understand how facts click into place, one after the other, and somehow make a story. Indeed, how does a series of truths end up sounding so fictional? That is magic, and magic I've ignored for far too long.

Although I sit and write this, I'm a lot less interested in myself that you might assume. Granted, I'm proud of what I'm doing, health-wise  and happy with how I'm doing it, but I don't assume I have--in either subject--a teachable product. I went into this at a good weight and in good shape, so the exhortations of the health care industry to quit smoking, get in shape and attain a goal weight for your best chance at survival are true. I'm the poster child for most of the public health newspaper stories of the past 20 years. They are true. Follow them. And much of the way my body has recovered and will recover owes a lot to that, and to my genetics, and to my mindset--much of which I received from my stubborn parents and their peasant ancestry, that which required we get off our broken asses and get back to plowing to forestall starvation.

I recover more the less I uncover of me and the more I uncover of you, them, and the group of us. The more I think it may fascinate me to understand how Project Runway entertains so many people versus why I particularly watch it (and I do, and it's crazy, because I am so not the fashion). I think I'd like to spend the next part of my life motivated not by facts and knowledge and mentality but more by intuition, joy and impulse. I'd rather see myself not apart from, and not necessarily part of, but more connected and a bit more viscous than dry.

I know that once you're part of Cancerville, you never really move away. You might be declared free of it, you might be scanned clean year after year, but you are a citizen. How you live it and move forward is a matter of such choice that you cannot imagine you have--but you do have it. My choice, evolving as it is, might be summed up to be organic--to lean back into the tide of voices and experiences and let them rush over me, hearing them, acknowledging them, letting them adjust me as needed. Adding my voice to yours, to theirs, and to them.

My Own Personal Jesus

In a couple of days, I'll have my second follow up visit with Dr. Brigance. I expect by then to ditch the tube sticking out of my neck--and I have to admit I haven't hated it as much as I thought--there's something handy about a pipe that can spew that much phlegm that efficiently.

I won't enjoy the inevitable scar it will leave, but I'll wear it as a honorific of this experience. Hope to never enter again the same way, but I'll at least know that I can.

I'm watching my skin settle back and waiting to see where those scars will be more permanent and where they will be less so--public swimming and public tanning, of neither am I a likely participant, may be out as options. So, being upset about that would be like pretending I care who wins the Superbowl.

I'll keep elevating and working with the right leg, but I can walk on it fine: the foot still swells probably more than it ought to, and if that doesn't quit, I'll have to shop DSW for differently sized pairs of shoes. The special section: Hot Freaks and The Shoes They Love. Clearance!  I get a variation on that email from them daily as it is.

Everything has gone well, frankly. Some of it so shockingly beyond well that I'm speechless. Hospitalization was incredible. I woke up on day 2 pretty much ready to come home aside from still wanting a nap. I felt, and have continued to feel, so good. Scott thinks that I lived with so much pain, and that of such a pervasive quality, that the lack of it is alone enough to elevate the senses. I'm sure he's right. I just--now--can't tell you how much that was: My mind won't think of it, or measure it. This is something about myself I love, and would have had no idea how to design--an ability to forget the worst because the measure of it alone is evil.

My home time has emphasized the goodness of naps and the realness of limits--that neither are failures of any sort. I've lost too much weight to be strong and I've lost too much muscle to compete. And there is no competition. I'm in the slog right now: gain weight if I can, stabilize as much as I can, get ready for the bruising of radiation and chemo dead ahead.

If you are tempted to see the hand of a god in my recovery, or a miracle in its speed, I think that's perfectly ok, but I don't agree with you. Oh, I am tempted at least in the miracle part--but I have to tell you that I think I've got to own this one. Agency is mine.

I can't deny I've worked like a hell hound to be ok, to keep my head on straight, to calm myself when they've wished to drill in me, shove a camera down my throat, pull a catheter out of my penis, stick one back in, sit me up, lay me flat, picture this, x-ray here--I've kept the center still and quiet.

Nothing has come between me and this vision:  I start from 3500 Market Street and I run, at about 6.5 miles per hour, to the Embarcadero Building. It's a Saturday, so the Farmer's Market is in full swing. Once there, I buy a loaf of Acme Sourdough for later, but pastries for now, some olives, some of those strawberries! I find some organic butter and local honey. I buy the nicest salami I've seen in a long time. The hippies with the olive oil stand have a garlic and herb mixed oil that I have to have--like now. And along with about 23,000 other people I look out toward Treasure Island while Scott and I try about fifty types of junk chocolate and coffee and mille feuille, he having come from Crissy Field, a bit further but no more fun than my Market Street journey.

After this, there is life, and it is incredible. It's soaked with the peculiar sunlight they have in San Francisco--and I've found that if one is from there, you don't know how particularly good that sunlight is--it takes a Midwesterner who has lived without it for far too long to point it out. The slant and the color are astounding. This is the kind of sunlight that pierces you and uplifts, creating a song or a poem or an appetite.

I've done well because this is what I want, because nothing stands between me and the vision of what is right and proper. I deserve to do well because I'm willing to work and earn my normal badge. And I'll tell you what I predict next--when the radiation burns, I'll figure out how to deal. When the chemo creates a puke, I'll figure out how to refill my stomach.

And, I'm willing to say that it may go even better than any of us suspect. After all, I'm running this scenario and I'm willing to make it good.

Event Horizon

Apparently everyone here is awaiting the arrival of the snow. There seems to be a general, decided, anticipatory feel to the air. Snowpocalypse? Spring necrosis? Inevitably, this will have to be something, and those more profit and now motivated than myself will make some cash off of it.

Your life used to happen, and there were disruptions and occasionally widely shared experiences. People of my age and up all seem to remember 1978's blizzard. It's name? The Blizzard of '78. Not very original. A lot of the people I know or have known remember Vanessa Williams becoming Miss America--not simply because she is black, and was the first black Miss America--she was also so obviously a hag and a stunningly beautiful one at that. I think she was the first honestly beautiful Miss America. She didn't look as if she needed to sleep in plastic wrap or hose her hair down with floor finisher every morning. When those pictures came out, we loved her even more.

Your life now, though, is an event horizon--one in which named people and products and storms move with somewhat unequal rapidity or gravitas, effect or affect. If you're in the area of this snowfall which is associated with a storm named X (I just don't happen to know this storm name), it will be brought to you, or hyped to you, endlessly, by these sponsors, this station or that  paper. Online, you'll read 3, 4 or more trajectory reports and variations based upon possibilities in the general West-East weather flow.

Charles was considering pushing me into a hotel room in town tonight because this house has a tendency to lose power whenever it storms--there's some weak peculiarity in this part of the neighborhood. We've lost power in heavy rain before! Of course I don't want to fork out $100 to stay in Bloomington freaking Indiana! That's like paying for the privilege of pain. So the compromise is, if I must, I must...unfortunately right now with a trach, I have to run humidity when I sleep, and I have to be able to suction, and as for the no heat thing, right now is not a good time for me and no heat to collide.

But it's yet to be proven, and won't be for some time, that the 12 inch snow they call for here won't turn out to be a 3 inch kiss, or a 5 inch so-what. It's happened before. If you watch Indianapolis local news, they flog the be-jesus out of any possibility of flurries such that you will swear if you don't buy bread and milk on the way home, you might starve before you manage the next exit of your driveway. These are not weather events--these are Kroger Events. These are moments designed to drive you into Kroger where you may say you're buying bread and milk, but that must be a Little Debbie Sandwich you're eating with that bread and you must be reverse engineering that milk out of Haagen Daz.

It is funny how marketing allows us to lie to ourselves, isn't it? It seems just yesterday that advertising was supposedly designed to allow us to indulge or discover, or appeal to our DIY instincts to improve. Now, it's just a ubiquitous tool that allows us to make each thing that happens as stressful as possible, so that we can eat as much junk food as possible to get through it. That's not the season-ending championship football game you're watching, it's a chicken wings event.

I look forward to joining back into the fray of eating the most vile crap I can get my hands on. At least for a day or two. After a few weeks of Nutren in a tube, I've found myself craving the worst food--get this--I'm dying for KFC. Yes. KFC. I didn't even eat KFC when I could eat it before--I don't know why I want it. Perhaps in the twilight of one of my hospital nights, eyes half shut but not able to sleep,  they ran their commercials extra hard. Perhaps some one in Indianapolis was murdered and they were caught by the KFC Crime Cam, I just don't know.

I will though tell myself that today's snowfall is brought to me by fresh blueberries and asparagus. That tonight's morphine elixir is sponsored by lean 6 oz serving of chicken breast with a seed of quinoa. That the way I feel about cancer is a product of Smoothies made with fruit and yogurt. And today's good news is that I honestly do want a healthy snack of pistachios.

Unknowable unknowns

5:15AM on a Saturday morning. Tomorrow they claim a snowstorm could dump as much as a foot of snow here. Normally, this would bring me joy--I love Winter--except this Winter, as I look back upon it, I have never felt warm. Literally, I mean, not metaphorically--in SF with Scott over Christmas I kept wanting the thermostat up, I hocked his warm fuzzy pull-over, my hands were constantly cold.




I chalked this up to being 52. Should I revise and chalk that up to cancer? At least indirectly--that all of that mouth pain and tongue horror took so much attentive resource that my systems were whacky and unstable throughout the body. A scientist would take some horror in my belief that this can be easily chalked up to cancer, but that's why I'm a poet and not a scientist. Cancer, j'accuse.




A few years back, I had a pain in my gut that was intense and over a period of time became unbearable. It took some time to figure out that I had an infection in my ileum (http://www.wisegeek.com/what-is-the-ileum.htm), which is atypical for people without Crohn's Disease so it was decided that I had Crohn's.




This was news to me as up to this point I could just about eat broken glass and get away with it depending upon how hungry I affected to be, I never had gastric distress, I never had to avoid certain trigger foods,

I seem to have no sensitivities to gluten, I'm not even lactose intolerant, I knew I could simply not have Crohn's, I was just the unlucky bystander who happened to get an infection in a weird place.





I wonder why I didn't react that way when they told me I had cancer--either I "knew" it or once I heard it, could trace the obnoxiousness of my condition back to that first zombie cell that refused to die, threw up its flag in my tongue and declared war upon my peace.




I do wonder when that happened. How many times I laughed, or had fun, or made jokes while tissue in my tongue was being degraded. How much joy should I not have had--or would have forsaken--had I properly known?




It is a shame to use Rumsfeldian language for any purpose but to belittle one of the least human individuals this country has ever produced...a man so evil that the death of others was a mere inconvenience to a plan, to whom the suffering of a nation of people was an acceptable outcome to a desired acquisition of his. There is a numb stupidity to the construction that cannot be bested. It should remind me and you that there is such a thing as true evil in the world, and to call it otherwise is merely to abet its existence.When I think of cancer, I think of him. They seem a pair.




I was unable to sleep last night because I continually had to suction the drainage from my mouth and throat. I decided around 1am to view this as the logical result of my tendency to heal rapidly, and to accept the inconvenience of sleeplessness as a trade off to leaping forward toward normalcy. I will see a victory where I can.








I wonder, pre-snowstorm, pre-dawn Saturday, when all of this happened to me. Was I happy that day, was I an asshole to anyone? Did I forget my wallet at home or my keys on the table? Did any part of my body shudder just a bit feeling a piece fall out of place? And did that shudder feel like a 52 year old realizing it's Winter and he's cold?

{Blank} Million Dollar Baby

Literally, I've wondered all of my life what I'm truly worth.

I remember all of those silly newspaper articles about how much the mineral content of the body was worth on the open market--$2.35? It was some relatively-less-than-latte amount of money like that. It was all very ha-ha, and every time it was reported the story ended with some aphorism that emphasized how one should never undervalue their unique character, and the gifts they bring to the world.

Through this wonderful cancer experience, though, I've started to find benchmarks that are more practically put, and far easier to express, in terms of the vulgar. To date, I've been worth several thousand dollars worth of pre-operative procedures. Six consults (although, fairly, in satisfying my deductible I paid for several of those), placement of a feeding tube, biopsy of a tongue, medical work up and benchmarking, PET Scans, CT Scans, ultrasounds--I put the total here at around $18,000. Were I not lazy and were I to gather up all the bills and add them together, I could be more precise.

One thing you should know about medical billing--it's weird. It's odd that you'll ever have a procedure and simply--in one place--be billed for all of what happened. No, for the biopsy, I had a physician bill, a facility bill and an anesthesiologist bill--the total only accurately expressed by all three.

Most of the bigger bills I'm to face have yet to roll in--but I did receive one the other day for the surgical work of the two doctors who fronted my team. This two pager listed everything that happened during surgery, who did what, and how much they billed for each procedure. That one came to $44,050--of which I owed $92.00.

I very nearly did a dance of joyful when I saw that--like most people, I don't have 44K sitting around waiting to hand over to my physicians--no matter how good they are. My inability to pay such a bill would weigh on me forever, as I'd end up paying it forever, $100/wk, rest of life.

I've yet to declare myself completely free of stress. That's just two doctors and one surgery. That doesn't have anything to do with the ICU for a couple of days, the Limited ICU for a few more, the round-the-clock vitals checking, administration of drugs, suctioning, humoring, nursing, oversight, team visits--there's still more to come

My guess is that I'm a quarter million dollar baby when this is all said and done--tossing in a few after-visits and the next set of treatments through chemo/radiation. And I may be under-guessing that figure if I don't consider the rehabbers who come after that--speech, swallowing/eating, physical therapy, occupational therapy, mental therapy.

It's difficult to feel sorry for insurance companies these days. Mine, Anthem, is able to pay their CEO an outrageous amount of money--that fellow certainly knows what he's worth. And that outrageous amount is hardly a blip to them, so my bump against the treasury will be as a ship passing in the night.

But I have in all things tried to watch what's going on, question it, and refuse what I believe is not necessary--by taking care of the small things I have control of, I certainly make myself feel better and further, probably save some money for the insurance company, though that's truly not what I'm worried about.

What am I worth? A hell of a lot more than 250K.

So, what happens when your patient is an asshole?

and especially when the patient knows it!

Look, I understand that I'm in the catbird seat right now. A lot of my idiosyncrasies can be explained away as reactions--to pain meds, to stress, to the scandal of my present body. The snark I leave in my wake, not substantively different from that which I typically leave, is rather like the South Park Alien who manifests as a Taco crapping ice cream. Which, btw, sounds really good...soon enough I'm going to have to try to be good again--GGG---in place of the DCDWDN vibe that rises off me like swamp radio (don't care, don't want, and don't need. GGG comes from Dan Savage's "Savage Love" column--meaning "Good, Giving, and Game")

My assholism manifests in various contexts. I'm not a Stop and Smell the Roses type, I'm a Get to Next Bouquet guy. I nearly killed myself in the Louvre trying to see it all in an afternoon. By the time I made it to the Michelangelo sculptures I too was an esclave to my idiocy.

I appreciate what people do for me, but instead of enjoying it, I want to prove that I can do it myself, too. Perhaps that's the imprimatur of my upper Midwestern farm background, where weakness existed in accepting help instead of offering it. Those intense social obligational webs of favors done and help proffered and help taken and help declined with the thanks of a pie...those things I've tried 52 years to escape and find difficult, nay impossible, to completely forget.

I'm the captain of the MSS Assholism when I yell at Scott who can't hear well instead of understanding that the fact that I can't speak well is a real problem. Poor man! I hint at words occasionally, hoping he will follow my elaborate gestures and vaudeville face. This is especially tragic when he's driving and I'm the navigator. I should take a video of it, but I'd be ashamed of how hard he's trying and how frustrated I get at the smallest problem.

Sure, there is frustration--and the fact that i want this to be done already is NOT helping matters much--well, it does some. I'm procedurally a very good patient. I pay attention, do what I'm asked, ask what I want to know, read the notes, etc. I look at my bills carefully, I eat what I'm told.


At some point, in 18 hours worth of surgery, I believe I will suggest to my doctors that they implant new mental models that people like me can't help but access. They will show people using canes and not losing dignity. With surgical swelling that people point at, but they don't care. Having a bad day and needing to stay in bed as progress in self monitoring not a deflation of the project. That the people you love and who love you know you are a raging asshole and are hoping that makes a positive difference in the scheme of things.

Greetings from the edge of sleep

When morphine elixir snakes through your feeding tube and into your stomach, splaying itself in a hot instant against the glorious neural network, and beginning its delicate harp solo, picking first this nerve, then that to soothe, you will know the special I'm experiencing.

This is the result of my first follow up appointment with one of the doctors who has organized and effectuated this rather amazing treatment plan. Dr. Brigance today was pleased with just about everything--except my leg which was rather more swollen--and my feet, far more swollen, than he'd like. I had the ultimate punishment of a leg ultrasound in the cold basement of the hospital to check for blood clots--slathered with whatever that horrific goo is, cold to the touch, with an instrument jammed into it, cold to the touch, in a room where I swear the air conditioner was set at 48 degrees....The tech was a sweetheart, truly nice, but like every tech she had to get the pictures and was determined at all costs to get them.

In order to effectuate sleep, Dr. B thought that an increase in elixir strength, from Lortab to Morphine, might be called for...wow, it's a difference. A magnitude of displacement, I think, but even at that, I'm writing this at 11;40pm because I'm trying to sleep with my leg elevated higher than my heart, my oxygen mask on, the light allowing me not to trip the 10 times I've had to suction my throat, or the 3 times I've had to pee....

I wonder if I'm such a creature of habit that I can bite back against sweet morphia as softly as she slugs me?

Today, too, following this appointment in Indy, Scott drove me back to Bloomington, and Charles turned around and drove him to the airport to return home to SF for a bit. After operation, Switzerland and recuperation, and 3 weeks away, he finally goes back home to plot his next visit out. Even as we attempt to arrange chemo/radiation there for me, the timeline seems--at least in Brigance's view--to be set to keeping me here for this. Well, so be it!  Ultimately, I just want to be with him, but would prefer to be with him in good spirits, not puking, and not with a burned up, irradiated mouth. Perhaps it will have to be after, but I'm still working toward doing it there.

Charles put in yeoman's work, too--and in case you think I'm slacking, I've been cleaning the house and I made a huge pot of chili--two reasons perhaps my leg was a bit more swollen than it should have been (?), but fun for me nonetheless. I don't do static rehabilitation well. I'm not good at sitting still, and I'm not good at projecting out normalcy over a period of a year or more.

Mark Price? I want him back now. I miss the hell out of him, that sock jaw he had, the awesome way he could fall asleep and stay asleep, and that sarcastic tongue of his!  Please come back!

Until he does, I will try to adjust to doing the needful with all this equipment, all these instructions, all these necessities, pinning my body down to a prone position on a hard mattress, cold room, too well lit, in Bloomington.

May I help you? You cannot be helped!

I had to write an angry email to the managing partners of my primary care doctor's office.

I'm not sure why, but I seem to have slipped out of their orbit of consciousness and into some other ether where they are no longer tied to or responsible for what happens to me. This despite the fact that every move I make in the health care system, is somehow reported back to them, or allegedly reported back, as my primary providers.

This, despite the fact that certain decisions are still deferred to them as if they are my parents.

Currently, not being able to swallow, any medication I take has to come in either liquid or crushable form--and crushable has to be very crushable, suspendable in water and flushable down a G Tube--or feeding tube. It can't clog the filters or resist the flow...these are the parameters we're working with, and they aren't that exotic. It happens every day that people in this country has tubes stuck into their stomachs when they can't eat or swallow as normal. It's just not rare bird day in medicalville when this takes place.

So, I have one of those daily medications I take that is a horse pill, and is hard as a diamond wrapped in a diamond box, and cannot be crushed by me (me now, or me 30 pounds of muscle ago). And this is a daily pill--not a maybe daily pill.

So why is my doctor not so worried about this anymore? Why won't they respond to fax questions or caller questions (Scott or Chuck, both authorized representatives), and why won't they fix this problem?

Why too decide to heave another worry on me now? It makes no sense unless your jollies come from watching someone already stressed decide that camel's back is about to be breached.

I did receive one piece of advice from the office nurse--put the pill in a plastic bag, wrap it in a towel, and then crush it with a hammer. Yes, I tried this by the way--the pill sticks to the inside of the plastic bag you've just hammered it into. Perhaps I could melt the bag and just suck the embedded drug out of it afterwards?

Perhaps when my house burns down I could cook a bunch of meat and bury it so at least I won't starve?

I don't know yet if my latest ploy for some real attention will work. Obs to say at this point, but after I get what I want, I know who won't be my primary care physician going forward. But that's been on my mind of late, anyway--in the 2 months leading up to the final diagnosis of this cancer, I saw 4 different physicians, nurses or nurse-practitioners at this practice to try to figure out what was going on with my tongue. Not one of them suggested I should be biopsied. Not one of them argued with my self (incorrect) diagnosis. Not one of them did the 10 second feel test that the ENTs did within a New York minute of my taking of a seat in the exam room.

They got their 4 visit fees. I lost a tongue. Seems like the trade wasn't fair.

Ugly Desire

Yesterday, my lack of sleep caught up to me and throughout the day I'd blank out into mini naps.One minute with keyboard in lap, the next with neck snapping back up and an involuntary "huh" sound forced out of the trach tube I know the sleep thing bothers me because I'm typically a regular customer. Finding that i like to work out early (way better on a college campus, too), I've been going to bed between 10 & 10:30pm and waking at 5am for years.

Last night, also egregious, I got 3 1/2 hours sleep.

I know it will get better when I don't have oozy staples all over me (at least one hundred of them), when I don't have a trach tube, and when I'm not running a humidifying mask on a compressor unit in the bedroom. Not to mention that lying on my back isn't favorite sleep position, but so much easier when one has a huge plastic splint on the right calf.

Desire used to be a straightforward business too, and almost always egregious. Rarely did I desire anything mundane or accessible, rather I desired situations and products that would be, even in situ, difficult to arrannge--like a tin of sturgeon roe on the shores of the Caspian, a bottle of tight-bubbled Veuve Cliquot to wash it down.

Post cancer, though, the desires that move me are of an entirely practical, visceral, sense. A slight reaching back in time to when I could have what I wanted to have, barring only cash and effort to achieve it.

Peanut butter is s Siren, Even prior to surgery, my tongue motility had decreased to the point that I couldn't eat P butter--what a god-awful thing! Chocolate--who am I kidding? even if I could let it melt in my mouth and swallow (which I can't right now), I would be disappointed to find myself doing so. Part of my enjoyment of chocolate is shoving as much of it as fast as I can down the pie hole, I was the kid whose Easter rabbit was pretty much gone by noon. My brother Matt used to try to keep his. Good luck with that, sucker!

Scott and Charles keep apologizing for eating in front of me--no need for that. I can't do it, even if I wanted to, so I see no reason for them to not do so. Luckily, neither of them are practiced gourmands, or inclined to place more into dinner than dinner should place into them. I'm not about to be jealous of potato leek soup--potato leek lahtkes, perhaps, but not a can of low sodium soup.

Charles did stop at Sahara Mart to get some Guatamalean coffee (so good), and bought himself a small bag of dark chocolate bridge mix. We should review here--bridge mix is a simple concoction of nuts (often a tropical/domestic mix) covered in chocolate, In my chart of food fabulousness, this rates about a 45 out of 10. It takes the protein filled, fantastically satisfyijng chew of a handful of nuts and introduces them to chocolate, which will cover them, until they look like the questionably healthy defecation of a small vibrant animal.

Yes, they took my tongue, but they didn't take my nose, and long before I could see this bridge mix, I could smell its eau de vie. When I spotted that incredibly cheap green plastic film that only Sahara Mart uses for its products, I opened it, placed it around my chopped up neck like a feedbag and took a few deep breaths. Heaven.

Desire is ugly when it makes you do things you wouldn't normally do--act or think in a way contrary to all common sense and dedication you've ever applied to your life. My doctor said--"nothing by mouth" and certainly that phrase was in my head as I took a chocolate covered raisin (also available as a stand alone) and popped it in my mouth.

Well, it took about 3 hot seconds for me to figure out that what I did was ugy and desperate, but I promised myself that I would write about the buzzkill in common sense that accompanies cancer diagnoses. That supple little raisin with its brown, sweet overcoat, had to be laboriously shipped back out to/from whence it came

That should be the end of the story--ha ha, stupid Mark can't remember that his mouth is MIA and jacked up ten ways to Sunday--and Charles wasn't thinking deeply when he brought this into the house.

Of course I was disappointed not to be able to slip and slide one tiny piece of chocolate fabulousity down the gullet when I started to get other ideas--why not blizzard the milkshakes I like to make? Of course! Into the blender with a bit of ice cream and milk, a handful of bridge mix and pound and grate and complain and thin later--I was ready: Bridge mix and vanilla...ready, set...

But wouldn't go. No matter how small or insignificant the pieces seemed, they still overwhelmed my feeding tube's filters which are tiny. Great protection for me from ugly desire--bad news for the me who needed to cheat the abstemiousness of tube cuisine.

You'd think that failing twice would be enough, but of course I'm way too smart to fall to such simple procedural problems--why not completely flatten the bridge mix with a hammer and plastic bag? Of course! So I pounded the bridge mix into what seemed a powder and mixed with some ice cream and...

Nope. For this to work, my pounding must render what's left as smooth from piece 1 to piece 2 to piece 230,000. Good as I am automation, the same cannot be claimed for my self-automation.

Scott is back from Switzerland. He brought some truffles. They smell incredible...

*********************************************************************************

So, off my posting ethos--sleep really has been that difficult to achieve. I've been veering between 1-3 hours, non consecutive. I've been falling into mini sleeps during the day, and then, when I reread what I've tried to post, the logical leaps are so vast that I can't just rewrite or correct. This piece I had to actually think in several places why certain images came up--and why I had to take them out.

Anyway, we're working on the technical issues here...nothing that a few decent sleeping shifts wouldn't cure amazingly well....

MAP







































.

Optimal temperature pour salad: 42; presently 38, go for it;
Best Temperature, Mark: 97.4, just a bit more at 97.7, Blood sugar 116...see, there's a way, and now I was about to set and prove there was a way, too

Trinities

I have three drafts sitting in here that I started yesterday, but as I got no sleep yesterday, in writing them, I kept finding nonsense, bad spelling, grammatical horror. I correct things I find wrong in anything I write, but particularly with this blog, I think it, write it, publish it. I use as little filter as I can manage between reaction and production. It has its moments.

But when I'm so tired that I can't even figure out in retrospect what point I was trying to make, or I have a line of a single letter where I fell asleep typing, it's time to stop. And, yesterday, my release from the hospital day, was a long one, with no sleep, a couple of extra doses of unnecessary trauma, not enough food, too many tests of  my vitals. I was in the hospital for 7 days and had my blood pressure checked at least once an hour--often more--on a 24 hour basis. At least 168 blood pressure checks. The fact that I didn't kill someone has much more to do with fatigue than desire.

I'm sure there are arguments to be made for treating sick people like that and they all make sense so let's just agree to not bring them up right now, because I don't care to hear them. Hear this from the patient: Get real.

Three drafts mirror three emails I've yet to answer. These too present conundrums. In one love lost has truly changed someone I love. In another, there's such a tone of warmth that I wished I knew my correspondent even better, because there's soul light in how some items are expressed. In the third, old friends, from decades back, who reconnected at a very weird and completely non-cancer associated way.Is that even possible anymore?

Lost love: My Answer:

     It grieves me that months later you are still mourning the loss of someone more than celebrating the years you grew in the relationship, the happiness you felt at whatever moments you felt it. I understand your reliance upon a spiritualism that both moves one and reassures one, but your reliance is half-felt. You have not allowed yourself to practice any reliance upon it to recover your sense of your own incredible goodness and move on. And, frankly, you are good. I could feel it every day we worked together, I knew it when you took that summer overseas and came back like an Edison bulb. I loved that light and I miss it, and I wish you could offer it to me now. I'm the guy who needs it.

The soul light--what I should say:

I've always liked you and have been amazed at the brain power you give off--just a great vibration of thought and action. I learned a great deal being around that, and to me, that's the pinnacle as far as success. One can do no better.

Reconnection--the guy

I wonder if I've grown up at all from the time we knew each other and I'm tempted to say I haven't--at least in the good way that my humor is still quite a bit the same, I'm still vulgar, but I became nicer, and more engaged with other people and less engaging to them. I don't do the old floor show; I'm older and certainly now, way too tired.

Reconnection--the girl

You wore the most god-awful shorts back then, and they did nothing for your figure--they were a bit awkward, perhaps, and I likely said something about them, because of course that was my job. Fashion critic--yes, this from a guy who can barely figure out why I'm not in 501s at every possible minute of the day.
I don't trust myself like that anymore--I'm free!

And there's a fourth conversation that's been pulled through this situation and to which I've never stopped to give a definitive answer. It's a conversation between three people, and it's been delightful to be one of them. It's tide is love and respect, concern and caution. In one part, two guys are trying to find their relationship that has in its early life had nothing but trauma. It came in with the most blasted and unexpected strength, at a weird time, in a banal sort of way, and was and is a stun all the way through.

In the other part, there are two guys who have talked a hell of a lot for 16 years and not much has been left out of that exchange. That conversation is with someone who will always be in my family--the one I've created--because he did more than anyone to empower me to create that very structure.It's a conversation that has contained every ambivalence I've felt about myself and all instances of hubris and has combined them into something far tastier, some great dessert cake made out of equal parts dumbass and wonderment. I can't wait to eat it.

I'm out for now. In a few weeks, we'll find out about what chemo and radiation will look like, and soon enough, how they feel. I'm working on doing those treatments at the University of California San Francisco where there happens to be a nightly backrub and a cheerleading squad (not to mention good transit options and all treatment in one location!). A new blender awaits any smoothie I can possibly have or think to have. And during all this I learn or relearn--on the gross level, how to swallow, to eat, to chew, to speak, how to adapt to what has changed in my appearance, if anything by that point. How to be grateful for a slice of shit pie that came with a dollop of whipped cream for palatability.

Don't be afraid of eating heartily of those concoctions. They are meaningful.

How to tell a bunch of people you love them because they've made you better, and that's what you've wanted all along.

Mixed Media, Mixed Messages, Mixed up Mark

Mary Jo Blige or Josh Groban will Hyde Park Style straight up tell you that well over 1/2 million people will die of cancer-related causes this year, or put more straight up style, of cancer.

If you read the New York Times online, the bald kid will take a mere $19/month to save, through the services of St. Jude Hospital.

Bee Pollen stuns cancer, by the way, lately proven.

Just a day's worth of cancer at 4:25am. One day of a guy with cancer trying to not be a guy with cancer thinking about cancer while doing things not to think about cancer. Read paper, watch television, surf online, listen to dance music, and everything has cancer.

So, if you're reading this and you don't have cancer, clear paths are being forged by the American Cancer Society, et al, for you to participate in, revel in, loll in or depress into cancer nation at your leisure. Were I now to have the choice, I would choose my involvement with cancer to be $19/month. $19 is likely about how much it costs for a nurse to empty my urinal duck.


I will sound snarky and ungrateful in this little blog post read by 5 people and I apologize upfront if that is annoying or honest ingratitude. I just know that the development officer who came up with the persistent giving campaign at (insert charity name here) is making more money that I will ever make, and the place of the bald child in the Times is not just a coup, but an expensive coup, one that will recoup money for St. Judes but also bonus money for that officer or group or ad agency or ad buyer or all of them.

Disturbing as he is, cute as he is, tragic as he is, there will always be a bald child with cancer and it sucks. There will always be one who will donate his image--whose parents will authorize the donation of an image--and they'll be placed particularly, and strategically for those 318,000,000 of us who will not die and might believe that $19 a month is not too much to pay to prevent bald children from dying of cancer.

The American Cancer Society will rightly point out that a substantial percentage of cancer related research will not be funded this year. They will not have time to point out all of the titles of the research going unfunded, but it certainly sounds as if some of the 575,000 Americans who will die of cancer will do so because we did not study leisure options and practical recreational programming for Stage 4 Esophageal Cancer Survivors: Lessons and Indications for Success. Or, for that matter, that we did not decide to study why pink was so effecitve a ribbon color for the Komen Foundation.

I don't doubt that among the papers detailing unfunded possibilities for new knowledge is the one that leads to revolutionary treatment for a guy just such as me. And I'm now officially f u c k e d. But let me assure you this will not be the first or only moment at 4:37am that I believe that to be the case.

My purpose is so much less than theirs, really, and I own my narcissism. I want you to know that something happened to me that was profound and I felt it deeply. That I engaged in it as a manifestation of something I've done wrong, or happened in cruel happenstance, and i didn't care which applied. That if you cared about me, or it, or the fact that it happened to me, that you should know how much it made me more of who I am. That I am scared, tired, and would be willing to fund every research study if it might give me five more minutes of love.

And importantly, that I do not mock you if you do or don't give $19 to anyone. For the sake of outing myself, I give to Greenpeace and the Southern Poverty Law Center monthly. I'm thinking that if it will shut that singer up, I'll be doing something for animals any day now, too.

Just know that I will never ask you to be like me.

Saturday after the World War

in 1984, I wrote a poem that was by my tastes one of the best I've ever written--"Samstag Nach dem Weltkrieg" or "Saturday after the War World." Incidentally, I was in a deep funk with life when I wrote that poem--nothing was making me happy at that moment of existence. I don't honestly remember why now--probably my ass was too fat or I was too poor to go Joni Mitchell tour Both surely terrible situations to face, but both utterly First World Problems. I'm certain the South Sudan might kick up two people who have heard of Joni, neither of whom have spent any time wondering whether Joni breaks into the Jazz mainstream with The Hissing of Summer Lawns or Mingus, but here in Markville, that mess matters.

Anyway, I'm in that funk again today, and again for very first world issues, now some 28 years later, fueled by the first world problems I face in not having all 6 drains removed today by the docs, along with my cast off the leg. No, I only had 2 taken out. Damn the life I live.

I know that my problem today is that i didn't sleep last night...and I probably didn't sleep because I was greedily calculating the lovely way I'd feel without six additional drains hanging off my body as if I were a bad Christmas Tree. I was imagining myself, a Colossus astride the hallways of University Hospital and instead I'm still the 52 year old bitch from the corner room with dark circles under my eyes.

I want to go home Wednesday. OMG I would not want to be the person who tells me Wednesday will need to be Thursday. Heaven, protect the creature that would try to tell me that I will stay here until then. HELL TO THE NO. I simply will not accept it.

I have entered the death match phase of initial cancer treatment--the point at which a surgical patient realizes that being in the hospital is no longer tolerable or viable. I have healed enough. I'm ready to relearn jogging. I feel good enough that I'm ready to re-engage navigation. I want life to be jammed up one end and down the other and I'm won't be happy until the two threads meet in the middle and explode in one great satiation of blathering, messy, ugly, stupid life.

Mark my words and don't get in the way. This MF is ready to fly.

The Good Side of Bad

It was true: in progressive care, I slept four straight hours before anyone woke me up. I feel like I could lift a car or something right now. What do people do who sleep for 8? Chop down forests for kicks? One of these days, I'm going to rediscover that feeling.

My night nurse, Toni, has been in a few times and she manifests as a face on the body of a dervish. This would be more perfect were she a believer in the divinity of nursing, but she's far too practical for that--this girl just loves the nursing. If I had to guess, I'd say her personal religion has a heavy dose of scheduling and process involved int it--that by doing rightly, well and on time, we could solve most of the world's problems-and I agree with that.

It may open the door to Taylorism to believe so, but if you watch Toni go through the steps of checking vitals, dispensing meds and assessing need at her interval checks, you probably would never associate Taylorism with her whatsoever. You'd do a great disservice to the fact that if you truly love what you do, you truly want to do it with as little error and as well as possible.

Since yesterday, I've been thinking a lot about the good side of bad. This is an old conundrum for me. As a kid, I couldn't understand why anyone was ever angry at the Jews over the crucifixion. Weren't they simply doing what god had planned for them to do? Did they have any choice in the matter? Without them, would the crucifixion have happened if they had gathered up their psychic nuts, grabbed tight, and said, "don't kill the so-called rabbi, who cares?"

One extreme example of the good side of bad, perhaps....cancer, another.

I'm finding more and more how the GSB paradigm is applicable across vast areas of my life. It answers the worst pessimism with a slightly less polly-anna-ish optimism. It doesn't attempt to quell the forest fire of pouty self-loathing, it redirects it to that line of psychic pines we all have in our personal mountain ridges that require a good burning to pop out new seeds and spread themselves in acts of regeneration. The GSB allows you to look in the ugly screaming face of all the terror you can have and calmly tell it to fuck itself. You can stabilize with the GSB where no one can improve what condition is attempting to improve.

It is never bad to be practical. That's merely a way to explain what you actually can do in any given situation. Practicality itself isn't an answer; it's merely a laying of new fencework when you've had to sell some mental real estate. You cannot be made worse by trying, and we all know it.

So damned if some progressive care sleep wasnt' just the GSB I needed...Toni certainly understood that when I told her.

Janis Joplin didn't ask The Lord for an Aveo

I've had two distinct situations in my day today--one as high as possible, and the other quite possibly the lowest I've yet had.

I woke today as the perfect hospital patient, in my beautiful ICU room with the nice view, the wood laminate floors and the incredible nurses. Mind you, I got no sleep last night. My blood pressure was taken hourly by a dictatorial machine. There was a special breathing treatment at 2am, a special chest xray taken at 3am, visits by a pack of roving doctors a couple of times, poking at my flap, hourly doppler checks of the blood flow through two special incisions, one arterial, one venal. I did not wake to the breakfast plate--my food flows through me on an hourly, pumped basis here--a very stingy 28 ml per hour of pale beige Nutren. Blood sugar was checked all night long--there was no room for anything but the cattiest of naps.

I woke knowing that I might move today--to a progressive care unit, not intensive. There, no hourly checks existed--I'd be far more autonomous, but frankly, for all their nursely hassling, I loved the ICU folks. They were thrilled that I like moving under my own volition, and seem to have a power of recuperation from surgical anesthesia little short of unheard of...yes, my special superpower is the ability to be intensely out and completely up almost like a dog.

And much as we might wish to fight for one another, I don't need ICU and they didn't need me. I was a vacation patient, they were my spa hospital.

Still, I had things to look forward to--I knew I'd have Monica the physical therapist who understands that my hell yes attitude reflects my deep hell please attitude to going home. I will throw myself 1000 per cent at anything that reeks of goal attainment and discharge status. So it is with physical therapy, the kicking of legs, walking with walkers, curling of arms--besides, one day in a balloon bed and anyone should want to take a walk, no matter how small, and no matter how much Monica keeps telling you to slow down.

I knew when I woke that I was a couple of hours from respiratory therapy, the one thing that stands between my trach tube and my trach tube strangling me. The RTs fascinate me--they seem like a gang within a gang, and yet without any one defining characteristic to predict who would take medical training and choose to be one. All sizes, shapes, genders, and attitudes.

I whipped through PT this morning insisting I should be able to walk to my new room. I sucked down albuterol from the RT like it wa last supper at a chemical plant. And then the order came, and I moved.

I'm now in an older part of the hospital, and it shows. There's no cabinetry or wood laminate. The view is of an alley I'm sure I've seen on Crime Stoppers. The lighting is harsh. It vaguely smells. I was swabbed for MRSA as my introduction in. Welcome to the real hospital Mark. Welcome to hospital hell.

The bed is awful, the chair is awful, the television is not a 32 inch flat screen. It's a Zenith CRT of indeterminate age. It hangs too far above the floor to be easily stolen The only art in this room is the art of survival.

I've been a little pouty because of this move, but damn if I don't always overlook the good in what goes on if I don't like the gloss of the moment. My nurse here, Silma, is about the most charming woman...and being Indian, she digs the fact that I used to work at India Studies. She unhooked me from the huge number of things attached to my body and allowed me the utter pleasure of going to the restroom in a real toilet with no one watching. It was fantastic. Also, likely against protocol. I love that woman.

And even though it's progressive care, she has pretty much treated me as if I'm her ICU project--but there's not as much coming and going, and Scott and I were in this room most of the afternoon without any intrusions, though trust me, dirty eggshell walls, scuffed floors and a boyfriend 3 days out from surgery aren't turning any of this into a lover's weekend.

I will continue to hope to witness no personal injury crimes as I look out the window of my hospital room--and I'm sure my mood will lift further the more that people allow me the silly pleasure of going to bathroom like an adult. Only time will tell....

But I will wonder if they are eating york peppermint patties that were slipped onto their pillows on the other side of the hospital.

Room and a view

I have an incredibly nice view of downtown Indianapolis from my room, which they tell me I will lose soon. This means that I will lose my nursing set who are incredible, the view, and the fun we've had--but it also means I don't need ICU, and that's an thumbs up I'll not fail to mention.

I've spent the day viewing my body through the eyes of others--as a set of numbers to some--blood sugar, blood pressure, weight, and so forth--as a marker for conditions--good flaps, swelling, response to stress--as a teaching tool for the students at the Med school.

This morning, for the first time, I saw my image--quite a surprise. I resemble a cartoon character, one with the odd jaw, the big circular cheek to one side, the rather pendulously swollen neck. I was neither shocked nor alarmed. This is clearly what 18 hours of surgery on delicate structures will do. It won't go away tomorrow, either--the biggest surprise is the strength of the mental image I had of myself as looking rather like I always do. That map of the self is such a powerful and calming possession.

I'd say I look like a monster but you might take that the wrong way. The quote that Scott included in the banner of the site is from one of my favorite Bugs Bunny cartoons, wherein being chased by a dysmorphic hairy monster, Bugs turns around, whips out a manicurist's table and starts doing the monster's nails.

We can discuss or argue all day the relative gayness of Bugs Bunny, but an opposition to my viewpoint that the rabbit was Charles Nelson Riley level gay will fall on deaf ears. To my young eyes, it wasn't even subtext, or subversive. That rabbit taught me on both sides of the scale who and what I was, wasn't, wanted and didn't want.

I am in perhaps the least camp of all places and yet I'm thinking of the most camp things--a lisping rabbit, a man's vanity being challenged, a man's life changing from normal to monster to normal again.

The monsters in Looney Tunes were, let's face it, a pretty lovable crew. Their idiosyncrasies defeated them long before Bugs arrived to finish them off. They existed in liars that were set on the right turn that took the place of the left that should have happened at Albuquerque. The rabbit was simply the turning of the key in the lock that kept them from bothering society at large.

I think of cancer as a hairy monster that was more successful with me than it was with Bugs. Lucky for him, things can be drawn in and erased out and involve no meter of change with which to deal. Bugs' tumor won't need to be excised and his body won't have to change to demonstrate where and how it has worked to realign its normal.

Is it okay that I laughed when I saw my cartoon face? I hope so. We monsters do lead such interesting lives....http://m.youtube.com/watch?v=acfx4orazEk

We are the champions

I've never spent a more full 18 hours than those I spent in surgery--nor have I been so unaware.

I woke to a smiling face, a few times coming to the surface, I thought I was dreaming, and that I remember. The dream part because there was no pain, no lump in my throat, I wasn't struggling against anything.

I was in a room with a smiling woman. She spoke to me in soft, suede tones. Finally I realized she was asking me how I felt. I wanted to tell her.

Right now, there's no telling anyone anything. Tongueless, there's going to be no saying of anything for some time--but I still have a voice box! Someday, I will speak again. It won't be in Elizabeth's tones, unfortunately, but the possibility is enough to satisfy me.

At the moment, I'm sitting in a chair, and I'm happy. Happy because of the chair, and where I am, and how everything has gone. I'm happy that I did well, and the doctors did better. Happy because the nurses are so good to me, but refuse to bring me coffee. I'm looking across the room at Charles and Scott and happy to see them happy.

Yes, this is day one of a very new adventure, and day one of a lot of work, but I'm starting day one out by doing more that I thought I would in a manner better than I was so certain I could.

The person I want to be is this person here, and now.

To all who have checked in, I'm doing it! For all the love you've sent along, accept mine in return,

This is how beautiful weird can be.

Mark Surgery Update

Hi....this is Scott writing for Mark.

It was a long day for Mark yesterday. He was in surgery for 18 hours, but I did get updates as each stage of the surgery progressed. The cancer removal went well, but he did, as expected, have a total glossectomy, and the neck and lymph node parts went well, too. They were able to keep the voice box, which was a big thing, too!

I was able to see him about an hour after the surgery was over. They told me he wouldn't be conscious, but he was, actually. I don't know how aware he was, but I took the opportunity to tell him how much love I felt for him all day long, both mine, and everyone else's who waited the hours to get updates from me.....and how how proud and amazed I am to have someone so extraordinary in my life.

Please keep Mark in your most positive thoughts as he begins a very long, new, and difficult journey.

But rest assured he won't be doing it alone :)

Scott

Signs of Spring

Underneath a bare dusting of snow, the ultra dark tulips I planted two years ago have crested the ground.

The dogs want to stay out longer, even though it's not noticeably warmer.

When the sun is out (rare in the past couple of weeks), it seems progressively brighter and more direct. 7:00am is not pitch black.

Although surgery is new this year, big change in Spring isn't a new concept to me. It seems that once the calendar reaches Valentine's Day, there's a natural spring that releases a coil of weird energy into my life at about the same time. I theorize it's because, being born on November 20, that February 14 was my conception day. The thought of my parents doing the horizontal boogie on a romance holiday is, I admit, enough to make me hurl, but there it is. The calendar doesn't lie.

Sunday, like Sunday always is, is for tying up loose ends. Laundry for all the towels I've drooled on, the clothing I've drooled on, the sheets I've drooled on (whoa, a pattern, huh?); a visit from my niece who is in this section of Indiana for a change; the sorting and placement of trash for Monday night curbside placement (Charles, don't forget to pull this out to the curb!); the general straightening of the house so it doesn't look a vulgar mess. Sunday like Sunday should be.

I've been thinking today about the claim that there are no atheists in foxholes. I call myself an atheist, but honestly, I'm sure something more than randomness has made this world--I'm just not theistic or christian or any religious label. And I have not, and don't intend to pray about what is coming up. I've put my own faith in doing well and acting best whenever possible. But to do honor to my humanist side, I've also tried to be as normal as possible, given that what saves us, often enough, is a firm belief in self, a firm tether to reality, a firm desire for one's routine.

Scott has told me he'll post here when the surgery is done, and he's received word of what has happened and how successfully it's been perceived. I of course will be out for awhile. I don't know how long, but they tell me they want me up out of bed in a couple of days, so let's hope that means I'll be clear enough to engage in something as fun and satisfying as this one-way conversation.

Yes, I suppose I always admired monologuists and simply didn't acknowledge it. Selfish, I know. Menschlisches, allzu Menschliches!

Talk amongst yourselves--here, I'll give you a topic: the Holy Roman Empire was neither Holy nor Roman nor an Empire--discuss!

T minus 68 hours

I check in for surgery on Monday, March 4th at 5:30am. Surgery is scheduled to start around 7:30am. Surgery may still be going as late as Midnight on the 4th.

I'll be alseep, of course, and given the twilight state, won't even realize I passed a 14 hour period out of consciousness. The person to worry about in the scenario is Scott, who is sitting out the interminable thing at the site. If you're in Indianapolis that day, bring the guy some lunch! Better, pry him out of the waiting room and make him engage with the outside world for a few minutes.

I have as many mixed feelings about that as one can mix. I can't sleep now, at home, because of the pain in my head and neck--I want to sleep badly. I'm welcoming this as a corrective. I go into the surgical plan without clear outcomes. I won't know until I'm well up just what I kept ad just what I lost. I'm prepping to accept the worse and ready to exult for the best, and perhaps I'll land in the middle and be neither morose nor obnoxiousness.

There are so many images, lines of poetry, aphorisms, voices of other people with cancer, my family, floating through my head that it's difficult to manage any one of them or pin down why it's there--

I could say those mountains have a meaning
but beyond that I could not say
to do something very common, in my own way


Teach us to care, and not to care
Teach us to sit still


a vulturous boredom pinned me to this tree
if he were I, he would do what I did


On the day my mother died she got and cleaned the baseboards in the house so that when people came over, it would look good. That's where I got it. (my mother couldn't live up to her mother, either)

And hundreds of others. The voice of my brother Matt, gone these past 8 years, on my porch in Bloomington, drunk, when I was an undergraduate:  "Don't call me Vicki Sue, Call me Fallon."  My father, a delightful fellow in so many ways, telling me I was the most selfish person he knew (had to get that from somewhere, Mr. Price....).

There's no summation to the business of life that can be neat, and no amount of tying of loose ends will create a bow in this case.