Love Will Tear Us Apart, Again

It's probably a safe theory that Amazon Prime Music was designed with late-stage baby boomers in mind. A bit too young for the Beatles wave, we got full on smacked with Joni Mitchell's Jazz Period, Carly Simon and Linda Ronstadt--and now we stream them, recapturing or remembering where we were and who we were doing as Carly warbled "Coming Around Again."  That song takes me to my best friend's lake house, a joint, and the dark walls and low lighting of his delightful home.

It's good, too, for those of us who advanced into college practicing serious Smiths worship, and loving Joy Division, even if we didn't have that hair.

Among my cohort, I've read that oral cancer is on the rise, as it is throughout the population. This has been mentioned to me with the hopeful comment that more and more money is being spent on research and treatment development to handle the high tide. This does not make me feel good, but I try to take it for the bully comment it was meant to be. If more money is being spent now, doesn't that mean it might pan out to new treatment in, say, five years? I can't imagine where I'll be with this shit next month, Slick, but nice try.

One reason for the oral cancer tsunami is the implication of HPV in its development; there are a high number of patients who can pair that virus with their cancer, having no other genesis, no especial history of smoking, and no apparent genetic propensity such as runs in my family. Given that a high proportion of sexually active adults have HPV in their systems, these cancers are no kind of accident.

Somehow, amazingly, I appear to not have HPV. I know, it's amazing. I'm a first class slut and I'd be the first to admit it. I've had a significant number of partners in a significant percentage of the kama sutra for boys, and I enjoyed the hell out of myself.  Given the dodge on those odds, I should always buy a lottery ticket.

I've wondered, of course, many times and in many conversations as to why I'm such an easy lay. Some people have simply written off that behavior as part of being gay, a man, a gay man, double jeopardy, doubly slutty. Of course that's a total cop out, a way to excuse away one's whorish proclivities. I'm no more slutty for being gay than a blonde is dumb by nature, and no less of a man for being gay: I'm just a horndog.

I say that without self rancor. I've known plenty of gay men who weren't, apparently, quite as dickmatized as me (sorry, but I love that word). They may have been serially involved, but they tended to one partner at a time, for several years. I had my period of that sort of life, but for me it was just a cover for the fact that I was screwing my brains out while no one was looking.

I used to live in moral terror that I'd be called out for my behavior, decidedly un-Price, according to my parents, decidedly downmarket from the strictly monogamous, married, life they extolled. I excused myself by referencing my inability to commit under the seal of legal approval--another example of high level bullshit. Had I been married at, say, 30, I'd be an adulterer instead of a slut. I at least dodged that bullet; sex will bring you together, but love will tear you apart--even Joy Division knew the truth of that.

Jerry, the lake house owner and I, under the influence of Carly Simon's best on the stereo and a few fatty joints between the tunes, have had serious discussions of these points--whether the oppression of homophobia which kept our compatriots in the closet drove us to meeting older men who were looking to meet younger guys--or not meet them so much as have sex with them. An institutionalized pedophilia that manifested in gay kids who had to find gay life on the streets meeting up with the bridge trolls who monitored access to those magical streets. Did I start my adult life as a big 'ole slut or was that how I paid the cover charge? Was it the fact that we're talking mid-Seventies, height of the Sexual Revolution that spread me like I can't believe those legs aren't butter?

Honestly, who gives a fuck? Sure, it's good to know why you are the way you are, how you got there, by what route--but sometimes you're talking as the car moves along, you miss the landmarks, you can't remember the sequence of turns. Ultimately, it ends up as it ends up: Me, minus a tongue and a bunch of tissue from here and there. Those cigarettes never helped matters for me, sure, but even without them, my sister had a scary match to my cancer, or I have the carbon copy of hers, a situation that screams genes to my doctors, who look no further.

On Amazon Prime, if you type in Joy Division in the search box, the big hit comes up first--and if you listen to satellite radio, the alternative channel will feature it too. We are, some of us, surrounded by memories--so much so that we don't have to venture into the world as it is today. We can listen to the 80's, dance to it in specialty clubs, indulge in the 90's as it pleases us. Only when the present day obtrudes upon us do we have to consult the calendar. The mouth pain, the diagnosis, the doctor's appointments--if only love was the only thing tearing us apart.

Can I Type "Fuck" on Facebook?

I make a habit of reading parts of the New York Times everyday, and then I hop through a predictable procession of websites:  Joemygod.com for gay political news; OMG Blog to see what they've posted about new fun music; Huffingtonpost Taste Section for food porn; Herald Times Bloomington for 1.5 minutes of local.

In navigating these pages, I often run across other links and teasers I'll read--often lists or rankings that have nothing to do with anything I'm really interested in knowing. The Fifteen best small towns in America, the unhealthiest states, 10 reasons your resume gets rejected--they are pat, unsurprising, or ambiguous in that way that anything is when it's just a paid advertisement posing as a story.

In this manner, I've read several lists of DO NOTS from headhunters and HR executives about interviewing, and the type of public image one is best advised to project to accompany the job search. Did you know, for example, that there are companies that do naught but scrub the naughty out of your Facebook feed? True, the real sublimated fuck of you, the asshole that you actually are, the person with the ribald sense of humor is nuked clean. You glow with the unintended but corporate consequences of acceptability.

This annoys the fuck out of me.

Look, if there's one thing that writing this blog is about, it's finding authenticity. I'd like to know as well as I can who the hell I am before I croak. Am I good, am I bad, am I inherently evil, has my life had meaning and if not, can I stuff the damn thing full now before it's too late? I barely have time to practice French and Danish, I sure as hell don't have time to princess pose for Corporate Fucking America.

I'd like to be the model cancer patient, I really would. Selfless, unaffected, dis-effected, angelic, but I am in no way any of those things. I'm vulgar, and messy, and often enough barely contained.  I love to say fuck this, fuck that, fuck you, fuck them, fuck it all. I laugh when I say the word bitch and pinker souls visibly flinch. Yeah, Laugh. To be nice to me is to be honest, and to be honest is to speak as you normally would to me, and to speak as I normally would includes those words, plus motherfucker, which I hold especially dear.

Myself, I'd rather deal with a corporation that hires people who react and feel and have to post a Grace Jones video on Facebook because....damn.  Just for that reason. I'd rather buy my groceries and shop for shirts where people know that slave labor made 90% of what surrounds us and no matter what our Facebook pages look like, we are dirty fucking bastards who are participating in the rape and murder of countless people who count less than us because they weren't born here. People who say fuck in Bengali, Creole,  Hmong,  Tagalog.

Along those same lines, let me just get this off my chest: I still can't be married in every state of the US, but by god if someone utters the word "fag" we now all have to fall out over bigotry. Does this bother anybody? Does it shock you that some fucking asshole tells fag jokes and there's a lynch mob forming for him while gay men are getting the shit beat out of them on New York City streets and all we hear is "Well, let's wait for the justice system to work."  As if.  Oh and by the way--Tranny. Hot tranny mess. Tranny tranny tranny. Damn that felt good.

I theorize that holding in who I am has created way more unhappiness in me than I've ever experienced as a contrarian, I theorize that unhappiness, self-repression and self editing are just forms of cancer, as destructive as what happens in my mouth, face and chest. The creation of homogenization was a boon to milk as a corporate product, so it seems people must be homogenized to maximize profit in just such a similar way.

There are times when I get a taste of the sweet in the bigotry of low expectations. I've applied for a few jobs recently and have heard nothing back, even from those for which I'm ridiculously well qualified--but in my cover letter, against the express advice of the HR experts, I talk about my year and half of learning from cancer. I talk about how that view has expanded me,, why it's wonderful to have to be creative about communicating, how nimble my mind has become to accomodate what I can't do well anymore, like lift heavy boxes or run on a treadmill.

And although I don't talk about it, how I like to use fuck on Facebook these days. In honor of authenticity, to create a Baudelairean moment out of  a quotidian event, to say I'm alive you dumb fuck, look past the bandages and watch me smize! I don't need Tourette's, Cartman, I've got truth on my side.

Love, Weird, Weird Love

I grew up in an old family. As the youngest of six children, my parents were relatively old when I came along, at least by the standards of 1960--my father was 40, my mother was 36, and my father's relatives who surrounded me in my young years were ancient by the time I came along. They were at the house each holiday, the table groaning with buffet servings of meats and potato salad and deviled eggs and cherries jubilee (no flame though, this was Sixties Indiana). They were ponderous, tall, tree like creatures, rooted in their folding chairs, a smile across their faces as I raced past, inevitably eating. 

I remember so well how sorry I felt for them; their conversations were of doctors and pills and diagnoses and losses, how they could no longer stand to eat corn, which struck me funny--I grew up surrounded by corn fields, as did anyone in Northeast Indiana, Miles of it, the summer air lousy with its pollen, the smell of fertilizer spread to encourage it, the dust kicked up by the tillage for the reception of it. As my Aunt Helen delicately put it--"It binds me up!" But hey, if you were born in 1900, it might bind you up too. 

Their lives seemed to be lived in a specific point where there was no unnecessary motion, no surprises, everything managed to create a path of least resistance when forced to move.. As I ran on sugar and peanut butter and as much fat as I could stuff down my skinny throat, vibrating like a freak under a full moon at every possible moment, their life seemed as if no life to me. I loved them, I enjoyed them, but I certainly didn't understand them. 

I was, this weekend, one of the old people in my family. My niece's husband turned 40, and he's a lovely addition to our family, so I very much wanted to honor the party by attending. They live a few miles from where I grew up in Columbia City, as does my brother, his two sons, and their various friends, significant others, and children. My brother's wife comes from a large family, a troupe of girls I grew up around, who went through school at the same time I did and are now, too, old people at the party. But not quite like me.

This was the first time I have been to a family event since I became old--old as in, can't play volleyball anymore, content to sit in a chair in the shade, happy to smile at the kids who are silly with protein and obscene amounts of energy. A guy who, could he speak, would speak of doctors, and hospitals, and diagnoses and losses, but who would die to eat an earn of sweet corn, being sold roadside all over the county as I drove through. This was the first time the kids showed me to a chair when I showed up, and when my older brother came, he and his wife parked beside me for the duration. 

Sitting there, I pondered who the hell I was now. I used to be Uncle Mark, the foul mouthed, barely appropriate raconteur who wanted nothing more than to fuck shit up. I used to be the sarcastic, flip, up for fun sort, for many years out with the smokers in the garage--I was the guy who wasn't going to get old, wasn't going the way of those Price family dinosaurs, years before, A comet, that's what I intended to be. 

No, I am not a comet. I am holding onto old definitions and ghosts because my new life hasn't quite fully taken shape. I don't yet know how this story ends, because it does not: I create it each day I agree to live this way, to make the best of it, to relearn to love who I am through whom I can be, to celebrate what I can do rather more than what is impossible. I mowed the backyard today, but couldn't do the front--it's too hard for me to breathe this summer air with all this grass and pollen and dust and ragweed and god knows what else in the degraded atmosphere of this most polluted state. But I love the fact that I had my ass out there in my floppy hat, my skinny so-white legs in athletic shorts, the dent of a feeding tube clearly visible under my t-shirt. 

Weird love is what I felt sitting amongst my brother, his wife, their kids, her family; weird because I never recognized it before, weird because I felt like my dead old relatives, weird because this is now part of my life. Perhaps a medical breakthrough happens and some of my functions are restored--it hardly matters. This is now part of my expeience, I've looked over the edge, and I've seen it, and frankly, I liked what I saw. I used to love nothing more than to crack on my brother--he's one of my favorite people in the entire world, he always has been. He was the one person in my old family who actually seemed to either understand me or not care that I was a total freak. Now I just want to sit next to him and bullshit the hot afternoon away in the shade they tell us we need. 

Jim, my brother, has the Price gene for bad heart and gimpy lungs; I have the Price gene for cancer. All of those old relatives of ours, every one of them died of either a heart attack or cancer. There were no accidents, no banana peels, toys on the stairs in the dark of night, autmobiles cracked up. They left, some suffering, and some quickly, one of two predictable ways. And so we will, too--eventually. I'm not predicting early exits here, but I see the shape of the doorways we'll go through. 

I thought of weird love this weekend because that's what my relatives knew so well, the way to love the strangeness in each other, the otherness of the other, with no condition attached. Those little smiles, they now seem like their way of signaling just such a thing--just as I would if my mouth would move that way, were I not wearing a mask to cover it. Perhaps this is where Tyra Banks' smizing would come in handy, and not on an ersatz runway on an ersatz TV network. 

Weird love that I cannot believe my niece and nephews, my great nieces and nephews, they are all growing older and yet I cannot think of them as anything but kids. Weird that a place I hated so much as a child is now a bit of refuge, a place filled with people I love and miss. Weird that I can find such so much joy in the simple act of sitting with my brother; I would never have suspected it of myself.

I am becoming someone I don't know because these moments surprise me. I'm not my old relatives quite yet, because I've not developed their introspection. I'm still fighting, a bit, to be the person I was, afraid to lose him, afraid when he goes away I'll lose whatever made me unique, that I'll flatten out into an old relative who needs a chair in the shade, first thing, without anyone knowing that I used to run the joint. 

Weird love, though, I think it always wins in the end. The struggle is a matter of pride that eventually fades to softness, the need that one hates to admit to becomes a badge of honor to the heart. The landscape full of tall corn spewing pollen smelling of cow manure and dust, familiar through the window, Rally the Schnoodle riding shotgun, head out of the window, the very picture of the kind of joy I'd do best to imitate. 

A Kiss and Then, a Slap

If there has been a pattern to cancer for me (and there hasn't), it would be best summed up by a kiss, followed by a slap. Over and over, like a blu ray of a Julia Roberts movie stuck on that scene. Good news or maybe good news or possible future good news followed almost immediately by bad news, possible consequences or high probability of awful in the future news.

I have tried to hear good things from doctors as if they are stock tips from a spurious relative. That is harder than you might imagine: if you starved for good news, conditioned to desire it, when you believe you hear it you tune in mightily to every phoneme. I can barely tell you the rather pedestrian list of instructions I get from Dr. Dayton, the conditions and the musts anchor in me lightly. I try to folow them, but really, at this point 100% compliance seems beside the point. Yet when he says something good, I can quote him like digital recorder.

Lately, I'm dealing with the fall out of my tragic impulse to slaver, all Pavlovian and unthinking, over positivity. My last scan which I wrote about was truly awesome--the best news I could possibly get--and I fell for it, hook, line and sinker. One week later, what did I find? A chest wall tumor which flattened out and disappeared when I started Erbitux has started to redevelop. No one knows why.

Considering I'm still on Erbitux and MTX weekly, this does not appear good to Dr. Dayton, and not to me. I've nicknamed the damn thing Vesuvius, because it has a habit of erupting at odd times, leaving a crust of schmutz and blood on my chest--and I never feel it. You see, this slap has a kiss in the middle of it: it doesn't hurt. It's a bit sensitve, and as it grows (now it's about an inch tall), it gets a bit ouchy in a tight shirt, but its burps of material and organic matter? If they didn't dry around the caldera, I'd never know they happened.

This little bugger sent me, this week, to the Wound Care Center of IU Health--rack up another new office in my ever expanding medical universe. I give them a 10 for effort, though--I had throrough attention from three nurses and one doctor with a great sense of humor. I have been prodded, and salted with an anti-biotic dust, sent home with special bandages, even a body bandage that women often use when they have mastectomies to keep tape off sensitve or painful areas of skin. These people are serious about wound care and do not mess around with nothingness.

Better yet, when I told the wound care doctor that my experience of cancer was kiss and slap, she required no explanation of what I meant.

As no one knows what is causing this growth to re-occur, I am allowed to indulge hopeful scenarios--that because I'm like a 5'11" tall walking bacterial pool, that somehow they are now constructing a diving board, on what's left of my left pectoral. This theory is workable only if you suspend disbelief at how an anti-growth agent like Erbitux might have effected bacterial growth before, when that's not really its job or function, but hey, sometimes the suspension of disbelief is the only thing that gets me out of bed in the morning.

The slap: no, it's truly likely this is a redevelopment, or a new development of cancer. The slap: they were right, I'm in the fight for the long haul, for the rest of my life. There will always be new cancer, it will always require new strategy. I will always and forever be wiggling and straning to make sure I have insurance coverage, that I can copay, that I can communicate, that I can survive. There is no easy way.

A kiss: I am now on the permanent tack of weight maintenance and weight gain, up to 148 as of yesterday. Surely something is going right in there if I can do that, all the while take three different antibiotics and completely destroying any notion of gut flora I ever had! The slap: even fat asses have cancer.

So, I've proposed to begin a steady exit from the kiss and slap cycle by walking in the harsh light of reality as much as possible. To make it less harsh by allowing it to shadow what I write in here and offer more depth than I'm able to, to make things a bit more documentary than docudrama.

My first step: the changed body, me, as I am today. 25 pounds heavier than six months ago, a long way to go. My left side now a battle zone for a redeveloping tumor, my right side scheduled at some point to fix the hole in my neck...it will be flattened out as the left. Hanging in the middle of me the hated feeding tube, always an annoyance. Me, as I am, waiting for the next monster to emerge, waiting for the next St. George, waiting.

Good luck, old man!

Another Doctor, Another Day...

I'm writing this as I'm waiting upon Charles to return from having the Mazda serviced, then to go to another appointment. This one, with Jill the NP, who monitors my immune system to--we hope--prevent its absolute demise. I don't envy her this job: slammed by weekly infusion and tested by continual waves of bacterial infections, I am a battleground.

I also do not envy her my mood today as I last thing I want to do is go to see a doctor or any stripe. I reach, occasionally, this plateau of "fed up" wherein the last thing I want to hear is more of what I should do--blah blah this, blah blah that, take this, crush that pill, put this evil tasting elixir down your tube. I feel like if any of these people had to walk in my shoes, breathe through my tube, eat through my tiny aperture, they'd simply shut up for a few months, knowing that I'm already living through a miasma of musts. They'd understand that one more instruction may be the tipping point where my temper takes over my normally positive outlook.

In real life, most doctors treat me well. They act as if I'm intelligent, I act as if I am, and I'm very honest with them. If they ask me to do something I won't do, I tell them. Then I allow them to sell me on the necessity of their instruction or modify it into acceptable range. They usually win. To doctors, as a group, there is a way through a thicket, not a network of paths, and your body will be forced down one at the expense of forging a new one because the appointment you have is scheduled for 15 minutes and they are already running 1.5 hours late.

If Eliot's Prufrock had measured out his life in coffee spoons, mine is even more precise, being measured in micro liters against the hash marks on a syringe. My food runs in 2 ounce segments through a plastic syringe into my tube's hopper, and onward. Drugs trickle this way, crushed and mixed with water, or poured in from other measuring devices if liquid already. Today they will test my blood; tomorrow at infusion they will test my blood. My blood is pretty thoroughly tested each week to see if I'm standing up to what they throw my way. So far, yes, thriving even.

My weight is expanding as summer deepens, a bit of a love handle has appeared around my waist, I can make my belly button talk if I squish my stomach fat. I have luxuriant naps in the hot afternoon, now joined by my new companion, Rally, the schoodle, a six year old poodle/schnauzer mix who is 16 pounds of pure muscle and utter disdain for any other dog. I admire him as he leaps off the porch and bounds across the backyard to hate the St. Bernards, two yards away. He is single minded as I am diffuse, a foil to whatever indecisions I experience with his very pointed actions. He's also pretty much a slut for love, a state I can only imagine.

I'd like to challenge the doctors who challenge me to construct so much that is normal using a body that is anything but--but that which is miraculous to me (love handle, squishy belly, mowing the yard), is to them simple evidence that what they do works, and that I'm best to continue compliance with their vision. I like to see the universe in more mystical terms, and experience it as a sum total of good v. evil on a daily tally. Three hour nap, nothing got done? half good, half bad. One hour nap, some mowing accomplished? way better, good takes it three to one.

The great issue, of course, is that there's no endpoint for us, and to their credit, virtually every doctor I've had has admitted that. We aren't working to a cure, a remission. We are working to establish what will become maintenance, the point of non-variance from a compromised norm, incorporating the less desireable traits of surviving (food and trach tubes, prime examples), with the metrics of relative robustness (healthy weight, well balanced internal chemistry).

In marriage, death is countenanced as the great parting of souls united--though more frequently, it's lack of money or skanks that do the work. Death too is the great parting I'll have with my doctors, who will, until that time, be affianced to my "problem." Like any of the dating pairs I've known, we'll have our problems; misunderstandings that escalate to stand-offs, the silent treatment, misapprehension of intention, a less than fulsome kiss hello or good bye. Today I see the doctor and I'm tired of our thing we've got--by the time it's over, I may well be back in love.