The dog ate my homework

I've been quiet lately, and quiet about why. In the meantime, a beautiful leaf season has rained chaos upon the house, hitting Charles hard this year and turning me into a continually runny nose. Rally has taken to running squirrel patrol in the backyard, which one expects, but at his size he pops back in for love and approval with a coating of leaf dust and mold spores that would challenge the best of us to survive. Really, how can you not kiss a schnoodle?

Quietly, too, my return to chemo has been interesting. It seems to be working...the tumors on my lower chest are MIA, the lump under my arm is softening and burping. I don't want to say too much or kvell; the universe hates my butt dances. A small bone is tossed to me at midnight, I promise not to wake you and tell you how good it tastes. 

All good trails bad in its wake. For me, it's something called hand syndrome, a side effect of 5FU. It causes sores on the hands fissures in the nail beds and brittle nails. And it has roosted here. It is officially painful to type much. Band aids on the fingers or no. 

So production will be lower until this goes away, but it has been remarkedly persistent. Like Rally, it has come close enough to winning to make the game viable. I've seen him within inches of a tempting piece of squirrel tail, though I'm not rooting for him. Those squirrels bring me some sport to spectate, ticket-free. I need that right now!

Fighter/Quitter/Die-er

Let's establish some ground rules for reading this blog post:  I'll let you know it's up on Facebook but PLEASE, if you decide to read on from this opening point, DO NOT send me any message of sympathy for what I'm going through--I know you care, and I have avoided writing posts lately for the reason that I don't want to think I'm just trolling for support. I want to be honest about this experience and what's happening to me and not be an emotional suck hole. I leave that to other people who seem to have professionalized the technique.

I think I've gone through three distinct phases in cancer that I call fighter/quitter/die-er.

In the earliest days, after my first big surgery, my whole attention was engaged in fighting the cancer and regaining as much of my former "normalcy" as I could have--and I knew I couled do it! I was strong, I would become strong again. And frankly, there didn't seem to be any other response to make. I couildn't see why you'd start defeated by anything, even the Emperor of Diseases. I was encouraged in this attitude by most of my health care professionals, my family, Charles, and others who were involved in my life. It was right, and right for me.This blog  was born at that times and closely followed the fighter's creed of accentuating the postive and deriding the negative.

I have been in fighter mode for most of the past 2 and half years. And the mode still makes sense to me, except for denying the negatives, or at best, declaring them simple roadblocks. After pneumonia, I found I was truly diminished, and I began to wonder if I should quit being a simple minded ring boxer. If I should accept the negatives and try to learn to live with them better. Not as an enabler, but perhaps as a more strategic fighter--to keep ones friend's close, but one's enemies closer. To succeed in a new way by accommodating the changes instead of just trying to shut them out. They had become bigger, and burdensome, and impossible to just forget. A strategic fighter knows when to stragetically retreal, to strategically quit.

But in the middle of this back and forth transormation, a third phase started. The dying phase, the first inclincations that I have been so damanged as to be capable of dying far sooner than I thought. I can't walk very well, I pant unpon light (I mean light!) exertion. I sleep irregulary, fearful I won't wake up. Breathing is not esasy, seaonal change is a killer. I feel more pain, more bones creak, more diarrhea, less appetite, less happiness, less energy, less me.

While I feint, fight, quit, there is behind me a drain emptying, not nearly as far distant as I would like.  A drain I'm circling, unfortunately. This week, I told Dr. Dayton that I wanted one of the complications I live with to improve, just one. I challenged him to discover one thing that might make my life easier, give me a peg upon which to hang the electrolyte drip my optimistim needs right now. He's come up with one, and if it works, I'll let you know.

You an drive yourself mad trying to just be one person, which sounds mad, but somehow isn't. You can fight/quit/die all in a day, and I'm beginning to see that if you don't do those things, you're the crazy bastard. You have to face those mixed up phases in cancer, I think, you have to figure out the proportion of each day which will get, and surprisingly just throwing all your eggs into the fighter basket is about as much sense as monkey feces and the zoo. The fact that there's a zoo at all is gross; the fact that you can't believe a sentient being held prisoner there shouldn't throw shit is equally amazing.

Anyway, that's what's going on. I'm fighting to get some new space for optimism, I'm quitting just being a postive-mouthed fighter, and I'm trying to figure out how to prepay for my cremation and leave a list of account numbers and site passwords for Charles to suss out how many death certificates he will need. When should that happen? How should it happen? All I know is that I wish us both the best of luck in dealing with it. I face my fear of death as a fear of transition, from this life to that, to the pain of going, of reawakening, the pain of discovering how right or wrong I've been.

Don't cut me, dude

Surgery I too dislike it. 

There is a proposal on the table to improve my experience with the chest wound by possibly using artificial skin, to slow any progression toward blood vessels, and surgery that would pull muscle from my back or my stomach to cover it--though it's badly irradiated skin, and nothing may possibly take. I tend to lose at dice rolls lately, and I don't roll them if I don't have to do so.

I've met with the first surgeon, the one who would do surgical biopsies of the lumps that have reappeared on my chest. Still I wonder: why? Why biopsy when we know this is the cancer, bits of it throughout my system loding in my chest as opportune real estate--so why biopsy? I have no doubt of it, I don't think anyone else does either. 

I had a confab with the second surgeon, the one who would figure what to do with the wound--only he doesn't think there's much that can be done. The bad skin, the surgical risks, the probability of failure following effort, failure complicating yet another recovery period, He thinks not, and for the first time in the last couple of weeks, I'm pretty happy. 

I want to say this clearly: I will lose this battle with this cancer. It's not a treatable or removable cancer. What I' m doing is fighting for time, to enjoy what I have of life, to prove that you don't have to give up to be rational, reasonable and measured in the face of a killer. I won't give up, but it will eventually win. I just want it that eventuality to be some time away.

All along treatment, and wound amelioration, and hospital stays, and unexpected complications, I have kept this knowledge alive, even when people around me haven't wanted to hear it. I understand that; it's not my intention to spend a whole lot of time discussing it, but it's right, it's real, it's there. 

Dude, don't cut me! Help me live a little here!

The Caregiver, briefly

October 2nd, so far it's a bit overcast in Bloomington and Autumn is in the air. At night, it's been going down to the 40's, and I love that. This presages good sleeping weather for me--somehow I never feel that I surrender to the deep, lovely, embrace of sleep in Summer in quite the way I can when it gets colder.

Today is a special day because Charles turns 58, although he honestly looks 45 and has the keen optimism of someone even younger. I've made the chili, the gluten-free peanut butter cookies he likes and Rally is ready to lick him to death. His Facebook is flooded, evidence of a life spent collegially, peacefully, evidence of a long career mentoring, evidence of good nature.

Charles and I have, for 19 years, been family to one another; he's as much brother to me as Jim, as much confidant as anyone has ever been. There's very little surprise left between us, though in 2013, this cancer, it's speed and ferocity, was a shock to us both.

I've tried, over the past couple of years, to resist thinking of Charles as a caregiver, preferring to think that we were still partners in an adventure, that the adventure would eventually end, and there would be the new normal to fall back upon. A diminished Mark, a usual Charles, but still, well-tied and bonded by the passing of so many years.

It has been this year, I'm certain, that Charles has slipped more into caregiver than just safari buddy. I can't lift much, so he puts my pallet of water bottles into the refrigerator. I can't talk, everyone calls him. I can't clean much, he does. I'm exhausted most of the time, so he cooks for himself. He drives me everywhere--you don't want someone on a steady diet of opiods to be weaving through construction on SR 37.

He does all of this, and more I have enumerated, without griping. I take him away from work, which he loves, and there's no complaint. He goes to the store for me without snark, he checks on me when there's no one else who would do it. He fusses at me when fussing is very comforting.

Todaty, October 2nd, is a Friday, and he's at chemo with me, so he can hear what the doctor has to say about the biopsy coming up, the surgical wound repair, the inevitable hospital stay of indeterminate length. I didn't ask for it, I didn't have to ask.

Of course I hope that Charles has a really wonderful birthday, but that's just the tip of it. I want him to keep having a wonderful life. I look for him to find a new great passion with a smart, compassionate man, I hope he is finally paid as much as he's worth, I want him to have the very best shoes I can help him buy, and experience the joys of everything he deserves, all of the vast trove of it.

In general, caregivers are pushed into the background, which is unfortunate, but the drama is often easier to focus upon, and I've been supplying that in spades. For the record: I would not be here today without the unquestioning, freely given support of my caregiver, chauffeur, shoulder, rock of normalcy. Happy birthday is a bit less than what he deserves:  Happy Life, Charles

I Should Sit in Depression's Chair (but I'm not)

Honestly, I can't figure myself out sometimes.

Lately, bad news has really been raining down upon me. The chest wound left over from the April surgery refuses to just heal up, and is now undermining toward large blood vessels. If they rupture, I bleed out, and goodbye Mark.

The old tumor Krakatoa has been replaced by multiple tumor-lettes, a couple of which spout drainage and I'll have to go back to daily dressing changes from Home Health which I loathe. There's no space for me to just be me, to not have to think every freaking moment about Mark the Cancer Patient. Seriously, that's what I most want, a place to call myself normal, and it's just not available anymore. No vacancy.

Coming up, I need a biopsy of those tumor-lettes, and I want a non-surgical biopsy. I don't want to go near the hospital because they seem to want to keep me everytime they see me. I am surely profitable because they are not an institution fond of anyone whose name is not Dollar. I must reek high margins and denominations when the sliding doors open. So, of course, I want to stay far away. But I can't...well, not entirely true:  I could insist on a fine needle biopsy under local anesthetic, but if I do that, I can't pursue the option of a thorough wound cleaning and the application of some artificial skin which would mitigate, at least for some time, the threat of bleeding out.

I am willing to go to the wall to not bleed out.

It's possible, I heard today, that the tumor-lettes are smaller than they were previously. The grievous walnut in my right armpit seems smaller and softer to me, so chemo may be kicking back in--and that would be good. Yet there's a consideration afoot to attempt to get a new immunotherapy drug approved for my use that offers promise and risk--promise in that it is apparently efficacious at just this sort of tumor-lette slaying, risky in that it can damage lungs. Considering I knocked out my right lung to pneumonia, how much risk can I really engage here?

My rule of thumb is 60% positive, and Dr. Dayton isn't sure we can meet that threshold. I do poorly at 50/50--I seem to always land on the bottom half of those twins, a three-way I never imagined, and couldn't imagine enjoying.

Then there's chemo itself with which I am less and less tolerant. My recent sessions have left me with more traditional problems that I've been able to avoid--nausea, albeit light and nascent, that "wiped out" feeling, that general sense of illness and unease--good lord, even something I was good at is no longer tenable! This is why, despite the howls of protests from my friends and loved ones, I sometimes feel like this is some punishment from the universe, that just won't stop--a constant cosmic pounding because I was such a shit person.

I should be sitting in Depression's chair.

But I'm not.

Fuck depression, people. Here's how I see it:  while true that some people cannot avoid it for their internal chemistry, and true that there are horrific events for which it's a normal reaction, depression is a choice outside of those difficult circumstances. I have wanted to chose it, ande lately I've engaged it in small doses of morbidity that pop out of me at odd moments. It's a condition that plagued several of my family members, thought to be a distaff inheritance. It's a problem I had as a late teen/early twenties kid.

In fact, overcoming it in my early twenties was a real triumph for me, though I didn't know that at the time. I didn't have a chemical inbalance, I had a life inbalance. I was traumatized by growing up in a town the size of a postage stamp where people like me were viewed as perverts by our enemies or unfortunate by our friends. There was no slack, there were no vacations, simply a relentless pounding of one's inadequacy against the great Heteronormative World we should aspire to inhabit. It wouild have depressed anyone, Yet, engaging depression was a choice.

There are a lot of luxuries that I live without, and engaging depression is one of them. I cannot, I just can't, or I'm done. I have to run, and swing a shovel behind me to beat it off, and its tiring but necessary. I do want to live. Why I can't tell you--I can point to various things I'd like to see happen in my family, I'd give yoiu reasons about finally writing a novel, more poetry, blog posts, seeing my friends grow older and prospr--all of that perfectly valid, but I don't think it explains that I want to live as much as I do want to, and perhaps that's just an unexplainable thing.

It's a fierce light to live by, one with varying sources of fuel. I want to know how to quantify happiness, I'd like to see Charles find a guy to be with when I'm gone who's devoted to him, I want my young nieces to have kids so I can be a great-great-great uncle before I die (I really want that third great), but i want it on terms--happiness, contentment, a stable relationship, a child. I want to hang out with Rally, I want to have a period where I'm well enough to go to lectures on campus and learn stuff that will never be useful in my daily life because that's the best sort of knowledge.

So, no, of course I can't sit in Depression's chair, with it's deep cushions, the wonderful throw pillows. I choose the hard wooden seat you have to sit on if you're optimistic, one so unforgiving as to truly make you butt hurt while you await the results of faith, which are often unrewarded. I have this stupid idea that if I can just hang on a few more years, they'll find ways to stabilize me, even fix some parts. I have the notion of fighting with my oldest niece, keeping my brother alive, sitting on a lawn chair in Warwaw or Columbia City as a group of filthy kids plays god knows what around me. I see the day around me then, temperate, a lovely breeze, shade, the green of a croquet lawn, an ivitation to play, a hamburger grilling with my name on it. Yes, that day.

Feeling iffy, but not straight acting

Over the past couple of weeks, as I've not been posting here, you might assume something is wrong with me, medically speaking.

I do tend to surprise--myself as much as others--with the rapidity of the conditions I have to deal with having. Pneumonia came out of left field to me, but once I looked at the list of effects it has, I see how it simply lay dormant in the mud, awaiting its own version of Spring Thaw, signaling its presence in ways I was to obtuse to connect. There are new growths under my arms and on my chest, and it looks as if I'll never be free of the Wound Care Center to deal with them, nor of Home Health to bandage the results. Sobering conclusions to suprise events do not make for good or interesting writing.

I did write a post, by the way, but ultimately I let it sit a few days--and I'm very glad I did. It was whiny, self-pitying, self-important, in ways that I don't believe I am day-to-day. I have my moments when I could pass for an entitled Millenial, but they've grown fewer and further between; I've learned.

I don't do much initiation anymore. I used to always be the one to push the agenda, but this no longer matters much to me, and doesn't hold any appeal. I can only except those events where as a patient, I have to choose which fork of the road to take.

This is why I get incredibly frustrated reading online commentary and looking through the comments sections. In the local Bloomington paper there exists a fairly small but very consistent group of people, many of whom know each other in the "real" world. They extol the same outlook, the same thinking, posture in the same political space as always. Their comments, no matter the topic of the Letter to the Editor upon which they comment, inevitably reflect a type of rigidity that they accuse the opposite side of possessing.

That frustration is born out of the feeling that I'm still expanding, I'm learning, I'm grasping things I didn't even know I didn't know. I want a world that rends its own fabric for the opportunity of knowledge, that enjoys adopting perspectives for test drives, to better understand they why of someone, the genesis of the emergency, the tipping point where change is used as a noun and not a verb.

I do this with handicaps. I fight against self-obsession with My Cancer. I do it without speaking, I cannot have dinner while discussing, at least not Peter Luger's in Brooklyn style. I can't know but I strongly suspect that many commenters, content with a pretend Hyde Park, and a pretend box upon which to stand and deliver, aren't dealing with this suite of limitations.

Yet they adopt grievances at rabbit pace; they revel in shaming others, all the while maintaining the rigid corseted world they inhabit. Today it was a gay man writing about how one is an asshole if one uses the phrase "straight acting" in reference to any gay man. Admittedly not my favorite phrase either, but honestly, I'm way less worred about what someone says. Often enough, I shrug and think, "so what?".

I would, honestly, like to understand what has happened to our society concerning this obsessive policing of verbal space. How is "straight acting" more offensive than what Kim
Davis spouts about me as a human being? How does that stupid phrase really hurt more than another day's worth of Evangelical hate speech against gay men and women?

I'm at a point where I wouldn't pose any question to a transexual about their experience of the world, or of the change they are navigating, for simple fear of saying a word, or a reference, or a reference to the compromises they are forced into accepting. I don't need to have my name pasted across the internet as a man of unchecked privilege, lack of compassion, cis-obsessed, whatever what might fit the crime of my mouth and brain. I'm conflicted, because it's so far from who I am to not work to the next step of understanding, but it's not reasonable to set oneself up for scarlet lettering.

At a time where it's so wonderful to forget cancer and just engage the world in all its stunning variety, to stop onto the phenomenological planet another person inhabits as it lunges past in a very large universe, I sense a shut down happening around me. Drawn lines abound in sand, and an ever-smaller space to stand is uncomfortable and easily transgressed.

Once I can sleep better--when this batch of effluvia passes through my trach tube, when the tumors recede from high tide, when I'm more right, more normal (yes! normal! my own construct!), I might fight the creep of creepy language policing. I might force people to understand that you don't cure racism by banning a flag, and you make very little safer by forbidding any but approved descriptions, and it is--after all--far more important, what you do, rather than what you say.

I Know That I Don't Know

I've been frustrated lately.

Why? Or why now especially? I'm in the fulcrum created by all the various problems I've had over the past months--April surgery, graft wound, pneumonia--none of which show signs of resolving into a final status. My wound was rapidly healing and then--boom--an infection. I was starting to think I could overcome the surgery's slap and--bam--pneumonia.

I have to face the possibility that I have some blame in the great scheme of these problems, that I wasn't careful enough, sanitary enough, isolated enough, to avoid the damages of infections, setbacks that I still think of as minor that are not, as I truly am now.  I'm concerned that a part of my brain still operates as if I'm b.c. ( before cancer) when an infection could be neosporined away. I know it does process like that in parts, that I still think I'm invincible.

It is fading though. I am coming to grips with the damaged lung and the heavily circumscribed list of activities I can logically accomplish--there aren't many and they are not impressive. I am disabled. This is a hard thing to say to myself. I cannot do a lot of things on my own anymore. I need help. I am significantly weaker. Sometimes I can't open medicine bottles, other childproof caps.  I cannot open boxes without scissors or a knife. I have to sit to examine, sit to contemplate, I can't mill about as I used to, hyper, the type who'd shake his leg as he sat.

I'm trying to change my perception without saying I surrender. Im sending healing thoughts to my lung, that I might recover function in a near-miraculous feat of will. I don't expect it but I will try. I am trying to examine the components of a task, to find the best way to accomplish the whole by finessing the components, Taylorism with truly good intent. Each step maximized to accommodate, leading to completion.

I don't know how to give up, but I know that sometimes I want to do just that. I simply can't though, it doesn't suit me to accept when I think I can improve.

I will continue to contemplate whether that's a good or bad situation. I think we mistakenly laud bullheaded, stubborn behavior, and that behavior is not always helpful. Sometimes it is more helpful to accept limits graciously and operate within them to one's best advantage. To prevent injury, further illness, more infection, by recognizing that what was is indeed in the past.

I am conditioned to think that moving forward in time is improvement in the self: more knowledge, more awareness, better health, bigger muscles--to see tomorrow always as an act of eclipsing today. Such a viewpoint, even to the healthiest person, is unworkable. We all will eventually fail that formula, whether on a temporary or permanent basis up to the point at which we die.

In "Roman Fountain", Louise Bogan said: "Still, it is good to try/to beat out the image whole...". That line stuck with me, ingrained itself into a sympathetic mind. I want so much to still beat the image out  like that, but I must be reasonable in how that occurs. Not with a hammer and bicep, but with a mind that practices the exegesis of everything passing in front of it, a gentle unfolding to the core, a mindful, practiced learning process, a commitment to learning all of the landscape it passes through.

I Feel the Force

My last encounter with the health care system at its worst, Bloomington Hospital ER, is being counter-balanced today by my appointment with my oncologist.

I usually come with a list, sometimes an NYT article I've read, sometimes a myth I need busted. We laugh, we sing, we braid each other's hair...no, not really, but compared to sitting in an ER listening to people who don't know me opining upon my prognosis, it's great to be with someone who follows my case and can put things in perspective when that's exactly what I need.

Today, we poured scorn on the NP who frightened me about my lungs. There's no unspoken-of cancer or a tumor there that no one has mentioned to me. There was just the ill-formed judgement of an NP who needs to learn when to STFU. I did learn the price of pneumonia though--my right lung is now not a terribly useful thing, and it will take a while for the left to come completely back to normal. This explains why I'm winded doing simple things, and the fact that I'll have to baby myself a bit if I want to do anything physical in the Spring planting season of 2016.

This is not what I wanted to hear, of course, but it's one of those things I already knew in my heart but didn't want to acknowledge. Much of this came up in a discussion of future therapies, notably immuno-enhancing treatments, a group of which are emerging for head and neck cancers.

That's great, but I've preliminarily ruled them out based upon my new rule of not engaging new drugs or therapies where the benefit/risk ratio is lower than 65 per cent positive/ 35 negative, as unengageable. I say this knowing that it knocks many possibilities to the wayside at the moment, re-saddles the horse of conservatism, and seats me clearly on Old Tex, the horse that would like to run, but is too old to pursue his old haunts on the race course. In this cause, I invoke, the Price Rule, which now states that excessive risk has never worked for me in this fight, it has only distracted me while my ass got pummeled by the bad luck of risk-taking.

On that conservative bent, I returned to chemo today, ready to start a few weeks of observation on my lungs, my breathing, my reactions to the regimen--it's not changing yet. Still Erbitux and 5FU, hopefully helping my left lung to leave its state of inflammation, to hold the right nodule back  (it was a pea, now it feels like a small walnut). I'm sitting here with Erbitux dripping into me, and I'm tired, so very tired. I'm hyper-sensitive to feeling breathing right now, so unless it's perfect, I can't easily fall asleep. Last night, I managed to get to sleep, but not stay there. I popped up at 3am. I'm tired in my mind, an endless calendar of appointments ahead of me. I wonder what I'll do this Winter when it's so difficult to breathe anyway, and something must be shoveled.

There are new concerns--is there a tumor developing on the left chest wall? chief among them. Zeus may have eaten his children, but he has nothing on me eating my own body into oblivion.

It's true that I'm not scared as much as I suffer from seeing the picture in parts, and rarely the privilege of seeing the body in total, the tumors catalogued and verified, everything explainable and even risible if I think hard about it all. It is more difficult to be brave if you don't know precisely what you're brave about, how much bravery it will take to Superman-stand against this stuff as it tried to colognize Gotham. Wbo knows? There's no right or wrong answer.

I am among friends, in restarted chemo, people who missed me while I was gone. This time around, I've had scans and blood draws to keep ourselves in contact, but that's not the same as my every Friday at 8am schedule I had been keeping. Back to that, empowered by small works of fact, I keep up a small but mightly push up Sisyphus Hill. It's the least, and just about the only, thing I can do.

And I call on peace and light to come back, on my spirt guides to teach me grace. I'm practicing being gracious while my underarsm throb as they are right now. Pain as the reminder that I'm alive. My breathing the rhythm section of a band that shouldn't be playing right now quite so well but is, pulling me downfileld

Miley Cyrus, ugh.

I guess it was just a year ago that I felt like bleaching my eyeballs out after watching Miley Cyrus wag her yeasty tongue out of her head and grind her ass against Robin Thicke's self confessed big dick on television.

I didn't think this was an epochal event as others seemed to feel:  our culture has sunk lower and in far more interesting ways than the simple evocation of pedophilia initated by something that looked like a rabid chipmunk who had been beaten to an idiot state by a cartoon log. Sorry Miley, you failed to shock, you just disgusted:  oh, look your tongue's out like an oral obsessive; oh, look I can alsmost see your titties in your little flesh colored pleather outfit; oh, look how slutty you are bent over like an alley cat. Yawn. 

In the year since, its just gotten more inexplicably public and less sexy than the zero sum game it aimed for previously. Miley smokes pot, Miley wears pasties in public--so what? Its mere predictability has rendered useless any message that was intended, if it even went that far. Tongue out? Must be the Cyrus girl, though someone has been thoughtful enough to hand the dumb bitch a tongue scraper. 

Cancer during this year has been my personal Miley, equally distateful, introducing the boredom of  a type of pornography into my life that I look away from simply because i can barely stay awake to watch it. We know this story, our relatives, our friends, our loved ones, virtually everyone has lost someone to this ass-wagging, tongue-lolling downward spiral of a disease. We know the sudden eruption of a tumor or the progression of a metastisized clump of rogue cells isn't the death sentence it once was, it's a call to battle, to change drugs, to toughen mentally against the coarsening of a life already affected, effected to stagger against a killer who strikes first requiring a constant defense. 

There have been articles in the Times and on my favorite blogs about Miley, and like me, they note that's she has managed to strip all the sex from sexy, all the shock, surprise and delicious rebellion from this long, extended strip teaste. A few years ago I started to notice that porn was boring in this way. I've never been a big consumer of it, but you know, an occasional clip or two can really pull on the imagination. But the pizza boy who delivers when the guy is just out of the shower, the paper boy who has to be paid when your robe accidentally opens, the plumber who cleans your pipes then cleans your pipes, you simply know the steps this dance requires. Like a Volta with Elizabeth I, it's the steps and the not the act that become the exegesis of stagnation. 

If cancer is waving its ass at me attempting to lure me further into defeat, or if it is waving its tits in ill-fitting pasties hoping the shock will weaken me, all I can say is bitch, please. I live in the age of Miley Cyrus, and frankly, she has just about ruined everything you could use to confound my senses. Rather than sit on my lawn chair yelling at the neighborhood kids to dress it up, I'll do them the favor of ignoring their ignorantly sexualized clothes. That's no more a turn on than I am, dumb ass, and I hope you grow old enough to know that. 

3am: Card 2

That's how I started one day recently, awakened at 3am by errant snot in my trach, making breathing a dice game. 3AM, I sit up and distract myself with surfing the internet, checking Facebook, anything to not think of the facts at hand.

I rarely think of how I will survive, how I will feel, if I will die on any given day. I try to accept my lack of control by exerting what control I have, now, in the moment, the only place it has any agency. I'm not sure if I'm copping out or buying into reality, or even from what reality is constructed. l believe in a mystical world, but not a fatuously mystical world--magic exists, but magic isn't an explanation. To me, magic is where my reality intersects yours, sort of a thesis for phenomenology in everyday life.

 My reality keeps bumping up against the big fact I deal with, cancer, and recoiling or engaging, I find there's some magic in that balloon pressing up against that popcorn ceiling. I spark a bit, I ask "why me" for the umpteenth time, I engage death, and what I hope it leads to, I engage my daydreams of what I'd be doing if I could in a body that seems to be boxed in an every decreasing enclosure. At 3AM, I look at an online tarot site, ask my silent question, and in answering it, the deck pops Temperance into slot number 2. It's the only connection that seems to remotely reflect my life that stands behind my question "will my health improve?" because it's true.

I'd accept no great improvement in my health to experience peace, balance, normality. I don't place much faith in prognostication, and tarot is only good with witnesses around you, friends, drinking wine and passing the joint. How I dealt with it in undergrad would work now, if only I could drink wine and smoke j's. I go to jobs@IU, another fantasy, at 4am, still sitting up, still constructing scenarios in my head that owe nothing to errant ephemera. I do this regularly. I read about jobs like I read food receipes, drooling, thinking of how well I could do A or B. Over the summer jobs opened up that I would kill to have, if only having them meant I didn't have to work, which I clearly cannot do. I look at the jobs site as this negative but reality based melody plays in my head. I look at houses I could buy after winning the lottery on Zillow. Apartments in NYC for a few million. Savannah historic homes or Charleston penthouses, I think of places and look.

It's well past 4am, my breathing has slipped into a normal pattern. I pause and stare at my laundry basket, my eyes itch, there's a spot on my back I cannot reach that would love my nails on it, if only for a moment. It's not to be. My reach and my grasp are vastly different: reach-wise I could walk to Vladivostok; grasp-wise, I cannot go because I would not hold up to travel that far. I need my head elevated, my feet warm, my cabin with ready heat or cooling for after I take my pain meds which often make me sweat. I need the place where my reality bumps this fact and this fact will not move. i feel like a clock that is loud in an underfurnished room. A meme by which time passes either too quickly or showly but is measured. Quckly in my reality, perhaps stentorian, quietly, slowly, in yours.

The Absurdist Comedy of Health Care

I begin this post lying on a cot in Room Three of Bloomington Hospital's ER, which is ridiculously over-air conditioned. I came becaue I've been experiencing a progressive closing of the airway which usually seats my trach. My bout of pneumonia was a peculiar complication for my trach. There's was so much stuff being coughed out of me that keeping it in was impossible. Then, I had it out too long and there's a build up of the heavy, snotty, waxy stuff the body produces in gallons, complicating putting it back in. Normally, the trach protects the airway from the buildup, so taking it out is no small event:  Don't do this at home unless you're ready for bullshit.

They've come and gone in Room Three, looking at me, questioning, assuring me they can do nothing for me. Doctors have been here, nurses by the handful. They can't quite grasp why I took the trach out, and they can't quite grasp how to fix it. They've finally decided to call an outside ENT and send me to an appointment with him at 1pm.

Does it seem that in a building with hundreds of medical professionals that I should find treatment by someone amongst them? It does to me. It seems reasonable to assume that an Emergency Room would have staffing that would allow for that, and the resources of the hospital where a hole in the net of comprehensive treatment is found. Doesn't seem to be the case.

Absurdist comedies run the gamut from funny to grim, the comedy relying upon an understanding that the situation in which we find outselves is ridiculous to say the least. The LCD is that we all find it incomprehensible that what is unfolding before out eyes is rational or advisable. Right now, I'm waiting on a chest xray that was ordered two hours ago. I need to pee. Charles is email-working over to my left.

I'll let you know how this story plays out, after the ENT  visit, coming up.

                                                  *     *     *     *     *     *

it's now 2:23pm and I'm home, and here's what has been happening:

After the  chest xray was finally taken and read by the radiologists, they decided that the pneumonia masses on the right lunig didn't look healed enough, and that I'd have to be readmitted into the hospital. This is where the gloves went on and I came out swinging.

I'd just had a CT scan that showed an improvement in these pneumoia pockets they were talking about, the xrays had to be wrong or misinerpreted (it happens) and I pointed out the more positive resutls from the recent CT. They agreed to try and access it in their system, and when they--of course--did, they decided on a comparitive film done by their CT. I agreed faster than a crack whore looking at a five dollar tip. At this point, I would do just about anything to not be admitted to a hospital. So if you're looking for cheap sex with someone who's completely uninterested in sex and majorly jacked up, I'm your guy.

the CT comes back confirming my side of the story, but what now? Sounding as casual as a Forever 21 salesperson, the doctor said:  "yeah, it looks like the tumor on my lung has grown significantly though."

This doctor (actually a nurse practitioner, otherwise very nice), broke the cardinal rule of oncology: don't use the words tumor and significant growthl together. Our ears and fears are trained to find those words in a 15000 word report and fixate upon them. Significant is not good. Tumor is not good. Significant Tumor + growth = Freak the Fuck out.

Dr. Dayton is on vacation right now, so whatever chance or opportunity to freak out on the shoulder on my oncologist is closed to me. Rationalize:  tumor doesn't always mean cancer; tumor is used differently, by different people, to describe states of being of a mass of tissue. And my favorite coping mechanism:  Jesus Christ, stop thinking about it lest you go mad.

So, I know if it's the worst case scenario, I'll have to return to chemo earlier than I want, there will be a new, tougher, regimen. My days more than ever will be taken up with cancer, I may not respond well. There's nothing I can do but wait, and wait in light.

Next is the ENT visit at 4pm. We'll see how that goes--hopefully more concrete than this.

Tangents

Often, when reading internet posts on huffpost, or political blogs, or newspapers, I find a story that raises questions so I try to find answers, or I will see an article in a travel section and realize I don't know much about the destination or the region in which it's located, so I chase some info down. I go on tangents, some short, some an hour-long sojourn. Today, my tangent was Mauritania.

It seems wrong to me to not know something if you can know it. With cancer, for example, I do far less research than you would suspect. Frankly, my science background is very light, rendering most articles fully unintelligible, some articles are simply from one's personal experience which don't offer objectivity (useful perspectives though), and others are miles out newspaper features that offer the skeleton but not the meat and bones of the conclusions from research, of the trials of a new drug, the results of a study of nutrition and cancer, and tangents for me need to yield useful (subjectively!) information about the question that has popped up or the topic upon which I found I knew too little.

Mauritania is the 29th largest country in the world. Or the 30th.  I've seen both used.

Anyone needs to know more, and there's always more to know. Now if I meet a Mauritanian, I will know to ask about the regularity of military coups, the socio-cultural divide between the south and the north, the oases often found at the valley level of the limestone escarpments. I would ask what Nouakchott is like, whether (if I traveled), I'd enjoy what I found there, did you. Know that Mauritania and I are the same age?

When I was first diagnosed with cancer, I meandered around the web wondering if I needed to seek out community, survivor networks, places to get a back rub with no deep tissue massage because I was afraid what was left of me would snap in two. I found all of that, but no desire for any of it. I've never been the best resident of a community, even amongst those who share a close experiential affinity. I like being alone too much, I like living in my head, I like being in charge of an army of one.

The success of any good tangent search is the ability to locate a useful piece of information from a site and move on--often a pointer to a new search of a related topic you didn't know of, or hadn't thought of on your own. Too, you have to read and not just scan if the topic is new. And if it's at present getting a bit boring, well, that's what bookmarks are all about.

I have likely satisfied my mission concerning Mauritania-the odds I'll meet someone from there are quite low; there are only a bit over 3.5 million of them according to the 2013 census figures on Wikipedia, or 3.89 million according to the World Bank. But even though this mission, this tangent, was brief, I still find I'm pulling for Mauritania to thrive. Because that's what 95% of my tangents are about: to find the fact, the tip, the procedure, to bring life back to full, to achieve a fair and equitable life, to never stop learning, to thrive.

Kinda, Sorta, Wanna Cry

Generally speaking, I loathe equivocation which has become the style of spoken English. Listen to any "analyst" on a news show, and just count the number of times that persons says: "sort of". I've heard statistics quoted followed by that phrase, evident truths modified by it, prognostication brought low by its inclusion. Yet few people seem to notice it.

I'm much more decisive and opinionated than that.  I don't have time for a metaphorical existence where perhaps something is one way, perhaps another. I don't like to wiggle out from under my observational responsibility by lacking the back bone to call shit something simple like shit.

To date this has been helpful in dealing with cancer. Idiopathic and cruel, cancer isn't much impressed by equivocation, though to be honest it scoffs at decisiveness too, although I see that it respects it more. While one is trying to figure out how sort of cancer is, it's busy eating your bones, taking yummy nibbles at vital tissue or just low riding the body's highway looking to bulge out here or there.

I, though, have been standing in the doorway of Equivocation's hovel the past couple of weeks because that's where circumstance has left me.  A lymph node under my right arm is either inflamed with infection or hosting a growing tumor-- we don't know which yet. Normally, the waiting to find out wouldn't bother me--so why are we waiting? Still, there's pockets of infection in my lungs and we are trying to clear that out. I have another CT scan next week, and after, another sit down with Dayton. There is still about a week or two before I know.

In the meantime, I want to cry because my body has erupted into 24 hr pain, dull aches here, ephemeral bolts of it there, the right armpit screaming, the left one moaning, and much of the rest of me out of kilter. I have had a fairly easy time with pain as we've moved forward, and I've been grateful for that. Experiencing it as part of the moments of your day is an awful burden. And I feel burdened.

I'm on a pain patch, one that I requested be kept low, to keep me out of the zombie state to which I'm easily drawn on pain meds.  Even at low dose I have to watch my balance and my two fingered iPad typing is about impossible. I rarely drive anymore but I don't drive at all on this combo. I know better.

My hydrocodone has turned into a 24 hour a day reliever too, every six hours.  You'd think the combination would suffice, but I still feel it, burning pain, ache, dulled slightly further, a bolt. I kinda wanna cry.

I'm not big on crying. For me when I do, it's a full body experience and my nose runs like its A wet Spring on the Mississippi. I still have the men don't cry situation like a lead weight around my imagination. I was born in 1960, after all.

I want to cry because I fear that node is a new cancer that I have to fight, that I have to gin up my positivity and stomp reality away. I have to talk about making it to 70 while seeing that goal slip out of sight, and I have to deal with being ok about that, about fighting smarter and not blindly, about being rationally prepared for what might happen. This is a lot of work, I have to tear apart responses that served me well in the past and truly question if that rote response is enough to pull me through now. I don't think it is and that scares me; I need to be ready if I need to fight.

Then there's the thought that this is an infection, enabled by the pounding my system takes weekly, or pneumonia, or what have you. What if I've become too dramatic to see that this can be fought with the right antibiotic, a head screwed on tight, a bit of humor. Not everything that happens with cancer is life or death. Cancer, conscienceless and biologically predestined, simply obeys the idea of destruction. It is the very antithesis of kinda, sort of.

I'll be scared this week, I'll be in pain. Sleep will be interrupted, odd, deep at times with milky dreams  forgotten upon awakening. I'll deal because I have to, and then we'll see what we must do next.

A Spa Day

Today, I go see my friends at the Wound Care Center, the doctor and nurses who are overseeing the post surgical chest wounds from my last surgery.

Wound Care is one of the coldest offices I visit regularly and going without a sweater is completely madness or an act of faith in one's resilience. I don't know why we insist on over-air-conditioning every office and public space in this country. It feels a lot like watching a drunkard in the old Hollywood movies go after some hooch in a bag. Are we celebrating our ability to mess up the planet's ecosystem so thoroughly or trying to make sure that nail in the coffin seals tightly? For me, for other cancer patients, it's a trial. Often enough I'm half naked in my appointments and more often than not, I'm freezing.

The competence and friendliness of the WC folk, though, is nice to encounter, and the fact that they've seen much worse than my healing no-no's is somehow comforting.

The rest of the day promises to bring a nap or two, a session of reading, nothing major...which sounds wonderful to me. I hope your Wednesday includes something nice like wound care, and something not so icebox cold that it threatens credulity.

Fancy New Things

Yes, I find myself wanting fancy new things. I've been thinking of buying a television for my bedroom, although Charles thinks I'm an intolerant viewer because I hated the first episode of "sense8" on Netflix. Sorry, my dear, it sucked an hour of life out of me. Never again. Anyway, a television and a Roku stick might set me right up.

I like my IPad but I'm really interested in the Surface line from Microsoft. One problem is that typical MS greed. Office isn't a permanent feature (one free year then you get to subscribe), and every peripheral--many of which are important to maximum use and enjoyment-is way overpriced. Any opinions or stories to share about this tablet/desktop?  Drop them here!

I need a new mattress but what kind? Not to be morbid but do I need to buy a mattress with a 50 year guarantee?  A 1500$ foam monstrosity? Do I buy for now, hoping I'll be around in a few years to replace it--a "good enough" cheaper solution. Personally, I'm leaning toward the good enough cheaper solution, if for no other reason than to reinforce my nascent live for now approach to life.

Charles started me down the path of desiring a recliner, an alternative place to nap or watch television in my bedroom. The problem is that 95% of the recliners made in the world are puffy messes that look like they should be owned by child molesters, and the ones that aren't are expensive. I also want one that has a heating module for those snowy days when I can't get warm. Or those summer days when air conditioning is about to kill me. Then I ask myself, what the hell? Why is this even in your thought process? I worry that I'm turning into my father who had an ugly puffy recliner with heat and massage. The massage unit sucked, but the heat was nice enough that it almost made me forget that my parents had no taste in furniture.

Many people do not make decisions, they ask for a sign as to what they should do. As if God would drop everything to create a comprehensible signal to the path of decisive righteousness. I look for signs, but I look to my own behavior to find them. Lately I see that I want to be here, want to live, want to enjoy. And I still want junk, so I may have cancer, but I'm still an American!

Chemo Brain is Real

I have now spent almost two months trying to remember Peter's last name. 

I first met Peter on the wide beach at East Hampton, having been invited out by a rich guy I was dating at the time. Peter was everything the rich guy was not to me, and with the setting sun casting out those late complimentary rays, he was a beach god. I was smitten and have stayed smitten with him ever since, though I haven't seen him in years.

I also can't remember his last name. 

Everyone has moments--at all ages--when a piece of information escapes you, and you allow its retrieval to percolate until in the middle of unrelated conversation you blurt out: "Peter's last name was...".  I am still waiting for that to happen.

The loss of words in the middle of typing (denoting conversation for me), very common ones, the loss of conversations that are alluded to or referenced, the loss of names, these are losses that are piling upon me, too many to be accidental, some too deeply felt to be anything less than disasterous.

Chemo brain (It's real!) describes a loss of or change of function, particularly in language and memory for me. I look at the long path projected for me with chemo, I look at the 2 1/2 years where it has dominated my schedule, and I begin to piece together its effects. I'm luckily not a guy who suffers outsized reactions to chemo. I had trouble breathing on Taxol if it was pumped in too fast. I had and occasionally still have the Erbitux rash on my back (very itchy but don't scratch), nothing unexpected though, nothing big.

But the small effects, the water that begins to back up as the beaver completes its dam, I am starting to see. I feel an acute difference in my energy and my overall sense of wellness after a couple of weeks away from chemo.  As I recover from pneumonia, as I heal from the after-shocks of my April surgery, I feel how good it is not to pound my system down as I'm trying to build it up. Names still escape me though. Common words fade as I'm midstream in thought and need them. 

I worry about dementia. I want to know myself, and you, and the where/how/whys of my situation up to the moment these things no longer matter. While these are different afflictions, I worry that such weakenings now encourage vulnerabilities later, and that if dementia is part of my genetic gift, its rising supremacy is triggered by my unwilling surrender of an artist's name, the brand of garbage bag I use, Peter, life.

See, it's not just cancer. We are ecosystems so utterly interconnected that loss of any sort echoes through us finding like problems, encouraging negativity, and gains, small victories, build cities, fix fire damage, bring names back from a dive in the deepest Mayan sinkhole littered with artifacts of this interesting life.

Blogging Sunday: what's next

good question, right? Anyone would like to know that, allowing for either embracing or quickly dodging the future as predicted by present trajectory. In the present, I'm doing better. Aside from pain issues, I'm stronger, walking more, doing small things, trying to lighten charles' load. I'm thinking more clearly about the future.

Today the dog is a love sponge and a lick machine. This is nice, except that Rally being a poodle/schnauzer cross got the wonderfully clever poodle brain, but also the snaky poodle tongue. For whatever reason, it grosses me out. I used to live for the moments when Hector, my chow chow, would deign to run his purple tongue across my hand. Hector's love was real, but never overt. Rally's is real and cannot abide hiding.

I'm trying to see the future in a like manner to how Rally sees love--blatant, open, and in my own twist, even changeable. Of course I don't believe we're blasting through life on predestination' rocket ship, but I know well there are inescapable moments--death, taxes, hospitalizations, being invited to a wedding.

Today starts overcast in Bloomington and I think our recent humidity argues for this being a rainy Sunday, maybe by afternoon. If it is, my future includes an episode of Poldark, some of C.A. Bayly's "The Birth of the Modern World", a crusade to clear the table of mail and medicine, a nap, some time in my rocker on the covered back deck.

If that sounds unambitious, remember that just a few weeks ago I didn't have the energy to sit up in bed! Compared to that, I have outlined an agenda...happy Sunday!

A Small Crossroads Meets A Big Truck

Left over from any decision is the road you didn't take, one that if left open, will eventually goad one to try it. 

I have been thinking of how I write PCB in the form of a series of essays published at whatever time I find convenient or when I'm so inspired. A blog can also be more like a report, daily, near daily, recitation of events. More how and why, less rhetoric, and that's attractive to me. In no way am I an expert in the economics of healthcare, the progression of cancer, what to expect if you're dying. I know nothing further than how to tell people to square themselves with the truth and to not vary that alignment. 

Getting the truth proves too often to be a difficult affair. Truth is often relative, or maybe it always is so. I cling to the idea of a few eternal truths because they anchor me, and right now I need that firm manacle at the ankle to keep me tied to Earth.  And, no, I don't mean eternal as in organized religion, I mean eternal as in a "that's life"' Sid Ceasarish manner. I do still have a healthy sense of humor. 

All of that to say that I think I will experiment by combining both methods into how I make this blog for awhile. It comes at an interesting moment. I'm emerging from an illness that I honestly thought would kill me and I wasn't upset about that; there's a new growing lump under my right arm, and it hurts like hell; my nephew's daughter is just starting college, notable in my family because so few do this; I'm starting to sense a change in how I perceive, process, deal with, the world around me; you interest me more than I interest me; and, I struggle to be the best person I can be under these circumstances and I don't know if I'm doing that well.

So I'll still write the essay that makes it seem as if I know something, but I intend to start posting more of the "the day went this way" too.  Filler material for a world that loves the ellipsis more I do.

You can tell me if the experiment works, but give it a couple of weeks. Then we can see if it's rational or interesting to know what goes into making PCB survive, daily, something not so low as a street brawl, but not nearly elegant as a duel with pistols deliberately askew.  No, this is just the grim sort of thing you might see on Black Friday between two idiots who both realize their dignity is no longer worth the amount they thought it would bring. 

Hiding Behind Yonder Dollar...

At some point, I'm sure, I've bitched about the opaque nature of actual cost in the healthcare system. Too, I've probably inveighed against the idea of "controlling costs"--which Anthem BC/BS wants you to do--without knowing what they are, even a baseline number.

This came up this weekend as my doctor attempted to request a refill to my antibiotic, Zyvox.  I found Express Script's refusal to refill without hearing directly from the doctor strange until I found out that a bottle of liquid Zyvox, enough for two days on my dosing schedule, costs just shy of $1000.00. I'd question that myself. It does however explain the cryptic question the doctor asked me before hospital discharge: "Do you have good prescription coverage?"

Before I sound totally deranged, Zyvox works well for me but damn!  How do people without good prescription coverage manage this? Say I wasn't a nice middle class white boy, and say I couldn't find a job or a spouse with good coverage...what if Zyvox were really the only option and I couldn't afford a two week supply of 7 bottles @ $6500.00?  I couldn't afford it. Could you?

I have been a bit more active this week and I've resumed sitting in my favorite rocker on the back deck while Rally sniffs his way through the yard. I can't, though, shake the meditation that has started within in about the thin edge I live on, both health and dollar-wise.

I never took a job when I was a worker because of pay, and I was never the type to remain in one for years. I love change and challenge, which often go together. This quirk though never landed me in a well-paid job, and I never made a lot of geld. This was ok when I worked; my needs are small, my wants are containable, my goals are modest.  On a fixed income, though, you become automatically aware that there are untranscendable limits. My income now is still ok for where I live, but it doesn't stretch to buy weekly chemo at 7000$ or 2 days of antibiotics at 1000$.

Unlike some, my use and access of both these expensive toys is no game. It's life/death starkly outlined in Treasury green. On August 1, I attained Medicare eligibility, allowing me to move my current coverage to a secondary payer status. Considering the amount I've cost Anthem over the past 2 1/2 years, I expect a really nice bouquet to arrive on my doorstep any day. I enter Medicare during yet another tiresome political cycle where Paul Ryan bleats about his fantasy budget, where Medicare is gutted and my state instead gets a block grant that me and my fellow social leeches can attach ourselves to, suck dry, and sit back laughing at the American taxpayer.

Except it doesn't work like that. Indiana has a long, distinguished history of using or losing block grant money in ways wildly divergent from what they were intended to address. The amount I might hope to get would barely cover the yearly costs of my deductible for the 2nd policy, and Medicare has no deductible amount. I'll always be 20% of the total. A 40,000$ hospitalization is 8000$ my responsibility, at least before it hits my secondary plan.

I sit, enjoying the little curls of heat and humidity that pass by and feel good to me on a limited basis.
There's another thing I live on the edge of--a house I love, great air conditioning, excellent heating, a feeling of belonging. Rare, I think, that people without insurance, or even without drug coverage, have a place like this in their lives, a place that when I shut out all the voices of what could go wrong, feels so safe.

When Obamacare was first proposed I thought we might move quickly to a "Medicare for All", single payer model. It would allow for the insurance billionaires to continue selling secondary policies while giving those queuing up for financial assistance for antibiotics a shot at least as fair as mine at getting what they need. Not to be--there's just too much money between here and there to ignore or walk away from having.

Upon my return home from the hospital I got a text from the home care company that changes my dressings on the surgical wound (which has continued against all odds to improve). They claimed their protocols required that I submit to an interview and health assessment before any changes to my dressing could be done by them. This process required 45 mins of my attention at a time I was too sick to read a book or sit up in bed.  Didn't matter to them. Interview or naught.

After telling them which parts of my ass were most kissable, I went days without a proper change because I was too tired, too sick and now too pissed off to even look at these winged monkeys of healthcare administration.  I have, since, had to go through this tiresome process but can I admit I was hoping a secondary infection would arise from their laissez-faire attitude so that I could just die and leave Charles a bunch of money? Terrible but true....

As I move on through long stages of recovery, occasionally rocking on my porch in delightful heat, I wonder if I'll ever just be able to acknowledge that I'm privileged within this system, so far, and others certainly are not so? Will I be able to relax knowing that I get name brand chemo in a boutique setting when or people like me get infusions that come with lectures about how they abuse public funds? Can I ignore how mean my country has become in my lifetime, and wonder why I enabled that transformation?

151

I am again sitting on the edge of my bed typing with two fingers on a poorly balanced IPad. Outside it's muggy and hot but I haven't been out in days. I exist in a twilight state that demands I sleep when I'm able to catch it. If it lands upon you, lucky soul, just lie down where you are and prepare for wonder.  The other night I coughed from 2am through Noon. Ephemera of the genus snot has pored out of me. Gunk of the genus lung in equal measure. You just have to take it, work through it, don't freak out. That gross you just coughed up looking like a snot web is better off outside the body.

I named this post 151 because I usually like to note events of importance, and I think the 150th post is, but that poor screed was written with a temperature of 102 and raging diarrhea that threatened to turn me into a raisin. In the hospital I had a bedside commode which is a fancy name for a very large bucket with a lid attached to a frame. It beats a bedpan by a mile, but you have to be able to get out of bed to use it. A nurse will help you if you want but come on...let me lose all my dignity a bit more slowly than that. 

In the latter days of my stay I began to be more insistent about not being awakened for ridiculous reasons, and the last few days I actually slept a few hours. The midnight, 4am, 8am, vitals checks excepted. No one escapes that. 

No one escapes hearing, too, "that's my job, I'm required to..." Or "our protocol demands it." You will hear this nearly immediately upon asking any question of why a telemetry tech performs maintenance on your heart monitor at 1am, shaking you awake in a dark room while screaming your name (I threw that one out of my room. Her response? "I'm just doing my job.") Ok, bitch, my job is shitting in this bed. I'll get right to it.

I don't know that Bloomington Hospital, proud palace of the IU Health system, is just another corporate monkey idly tossing its feces against a display window of "customer service".  I am, I'll have you know, until I don't want to give blood at 2am. Then, fuck me, it's protocol time! 

This was different from my two day surgical recovery in a private room. Those first horrible days spent waiting for a room to open up with a mumbling Alzheimer's patient 5 feet away-- I felt awful, that was just the portal to hell. Oh, and there was a truly special nurse named Patti who told me on my second day that if I didn't get up I was not participating in my own recovery. Bitch, I can't breathe and have no energy!  I hope there is a circle and a hell, and an everlasting fire with her stupid bitch name on it. 

Being home has its own challenges.  My bed doesn't adjust and I really need a new mattress. The house is being painted so there's more noise than usual. I walk more, but now is the time to participate. I feel myself getting better but in tiny little steps. They tell me I have two more weeks to overcome the infection and past that, one has to regain weight and try to climb the hill again, muscle tissue ravaged for the third time. No one gives you a map for this because they simply could not.

And that is why I want you to know this is post 151.  Fuck not winning.  

OK, I Surrender

I had planned on seeing my niece Anna for her graduation party in Columbia City. She's off to college in the Fall, the 2nd of our family to go for a Bachelors. You already know the first.

My hometown is a rather boring three hour drive away, and Charles and I planned to go, visit and return, so that he'd not miss work on Sunday and I'd not have to stay away from home, where I know how everything is laid out, where it is, what to do with it. Love my family as I do, I do think I would never stay with them. There's something I like about not knowing some things; whose bathroom is filthiest? whose guest room is an inflatable on the floor;

I knew given the 6 hour round trip in the car that I would need to feel as close to perfect as possible. I didn't wake that way. I woke at 4pm on a coughing binge that proceded until the early afternoon. I had progressively more difficult breathing--but, believe or not, these things have happened before. I didn't see how badly it would go.

It became obvious by mid afternoon that this was not ordinary coughing jag, and Charles started asking me if I wanted to go to the hospital. Given the seriousness and hatred with which I view  any trip to the ER, I waited to flip the switch; this had happened before and resolved itself before.

Finally around 6:30pm I could see my old failsafes had done the previous and eschewed the latter. We went to the ER where I was stabilized and they began to unravel the puzzle. That's how, when I was done, I went from citizen to indentured servant of pneumonia.

No illness that I know of is fun to have, but pneumonia scrapes the bottom of the barrel. Raging fever, , terroristic acts of diarrhea, strange sadism for watermelon.

That's how, last Friday, I was sent to serve my sentence in Bloomington Hospital, where I am right now. How much longer we all ask? I don't know. I can breathe, but the pneumonia that chose me
is MRSA pneumonia, and no one wants one of that walking around.

I've been on scads of medicines as they try to figure out the angle by which to fight this, and I am pretty rough geography for virtually any fight right now.

I spent my first four days in the Progressive Care Unit, which sounds like a great idea, but nothing that happened to me there merits either Progressive or Care in their titles. The room was cramped, and semi private. My roommate was an old man who, when not shitting the bed, was having alzheimer's inspired conversations with the fairy world he lives in. I felt sorry for him, but desperately wanted sleep.

Sleep, though, seems to be the last thing anyone wants.

I want to know:  Did you know they wake you at five to weigh you?  YES, weigh you. No other reason. They cycle through every four hours,  taking the same set of vitals, feeling the same pulse, and his doesn't feel like care--it feels like harassment. As if you were too butt-ass stupid to tell them that you felt something had changed. Then there's the random stuff that happens at night--the crash of something dropped,  A hospital is the worst, and the dirtiest, place to sleep.

But with MRSA? Private room. Isolation. Works for me.

I don't know when I will be released. I feel better, but not whole. I am tired and awkward, and a bit defeated. I miss my dog, my bed, knowing where everything is, coffee, the porch, my rocking chair and a good deal more

I'd say more about the general poverty of this experience, particularly the hospital, but I realize it does nothing to overmoan. Suffice it to say that as healthcare and medicine continue to generate big profits, administrators will--in order to protect profits--encultureate reactive models of service that while touting customer committment, will only make up wonder whose ass they stuck their head in.

If you sent me a facebook message of late, I may not have answered. I just honestly felt that badly, about as much as I do of poor etiquete.  Thank you, hope to see you soon.

What Happened to 2015?

At the turn of the year, this year, I was ebullient with optimism. It's all in black and white. There's no denying it.

I encouraged my pal Sara to put her faith in the arbitrary date change too. I feel badly about that.

2015, what happened to you? Sure, I got rid of a chest tumor, a spewing ugly mound of organics that only a cancerous mother might ever love. I constantly remind myself of how awful that thing was, and how it was flinging cancerous cells throughout my system like the confetti at a "Kill Mark" party. This was truly a good thing.

I balance that though with the fact of this arduous recovery from surgery, how old I feel, how much zest seems to have been cut out of me. I balance it with a weepy graft area, an open wound where the graft failed a bit, the home health nurses, people looking at me, assessing me, poking me, touching me--ugh.

I balance it against the fact that I haven't walked Rally in months, and I miss that.

2015 has been about struggles with corporate America.  No matter how many times I tell a company, a medical billing office, any entity, actually, that I can't speak the less they believe it. Or they believe it to such an extent that they won't contact me, or help me, at all. Never lose your ability to speak, because America is way too stupid to help you.

I've had an arduous time this summer just getting warm. I am fully a cancer patient, I am forever cold. Air conditioning is killing me. I loathe it just as many of the offices where I see doctors are ramping it up. Heat combined with humidity is indeed unpleasant and difficult--but is the answer to set the room temperature in the 60's? I go everywhere with my old heavy lumberjack shirt or my fuzzy birthday sweater (as good as panda pillow, Katie).  I still sleep with an electric blanket and I love it. Try to pry it away and you will not like the results.

I've encountered boredom for the first time in a long time this 2015. Just typing that makes me shudder. I've long had utter disdain for that stupid phrase, "I'm bored", so hearing it out of myself is a shock, but a true one. It is hard to get past recovery to enjoy a book, or a show on my Ipad, It is actually work to sit at the big computer and play those distracting games. I have Netflix, Amazon and Hulu at my command but I finally ditched Hulu. Straw that broke the camel's back? putting commercials on a 1980 BBC production of "Pride and Prejudice" (an epically bad production). Please. Go away and monetize to someone else.

I am aware that some of these complaihnts are pretty Firt World and some of them are a bit personal to apply to the flow of an entire year. it is time, though, to call it out: 2015, you've sucked long enough. You have five months to get your act together. Do it

A Small Piece About Summer Rain (sort of)

If you're reading this from elsewhere, Bloomington is in the grip of consistent rain, overcast skies, overall bad dog and cancer weather. 

I have been ignoring the world outside this week trying to teach myself how to win a game of Empire: Total War, which I bought on Steam's Summer Sale for 5$. It's an interesting game to be certain, I'm just not sure it's endorsed for such uses as ignoring society and alleviating weather based angst.

This is the real problem with summer rain of such glaring proportions: it forces out the little lizards of ugliness that live in everyone's crevices. It has exposed my iguana, desperate for a patch of sun, of hermetism....my Garbo moment, my desire to be alone. It's true, I don't want to see people right now. I don't want to type, I don't want to be brave, or not brave, or admired or complimented for my warrior attitude. I'm sick of it, I'm tired of how I look, how I have to live, and I'm tired of people not knowing that about me. 

I say that knowing that some people who read statements like mine--all perfectly true--then go to the other extreme and believe I'm depressed or that I've given up on the fight, neither of which are true. Rain is an obscuring event when it comes fast and hard, and so is just being so damned tired of being who you are.

I'm a bit stuck in a flash flood here--just by writing it out I can feel the wheels grip a bit better, the car moving back out of the water, but I'm not there yet. The rain continues tonight a bit, and even though I'm dry, typing this on my iPad on the bed with two fingers (there may be typos), I still shudder at the thought of actual real human interaction. 

I suppose the only exception to this is my weekly chemo visit, always enjoyable. Otherwise, I loathe the every other day dressing changes with home healthcare, the weekly physical therapy for my shoulder, the doctor's appointments--I feel caged, a parrot who says "I'm fine, I'm fine, pretty bird" in response to everything. A gimp bird with a pre-recorded message for a voice.  

The little frustrations keep falling down upon me, rain of their own.  My insurance suddenly thinks a chemo drug that I use isn't working, probably because it costs 6200$ a week. I've sent the same appeal letter twice and received no response. The student loan company gives me a repayment amount based upon income which I have to renew--I don't have all the documentation they require so they raise my payment--modestly--but I'm now a fixed income guy. I write them six times begging them to email or text me. The only way I've gotten a response is to pay my old payment amount instead of the new one. Finally a message: you are in danger of default. 

I begin to wonder why I had to have the cancer that took away functions that I can't operate well without having available. Everyone has a 1-800 number but I can't use it. I can't do everything through Charles' voice--he has need of it too.  Tonight as he ate one of my favorite dinners, Zatarain's Dirty Rice Mix (seriously, don't judge, I love it), I wondered why I couldn't have had some manageable prostate problem instead of no tongue, no jaw bone, and a mouth that hangs open with skin that has no feeling, all freakishly hidden by a stupid mask I wear every damn rainy day and every damn sunny one too.

At night, I try to direct my dreams to what will happen in the afterlife for me, but they end up elsewhere, muddy, indistinguishable from what the backyard is like these days. I want to see myself, as I sleep, with Shake Shak followed by Dairy Queen, but I only achieve that in twilight, and only in a Plato's Cave sort of way.  Not cone not Blizzard quality, as I wish it to be.

My recovery from surgery continues, it creaks along like a six legged spider compensating by lumbering sideways. I finally seem to have a grip on my hemoglobin, or at least the hint that I have some control.  My graft wound is healing beautifully the nurses tell me, the one ray of sun that no cloud is obscuring.  Yet I have a yard full off gardening I thought I'd do and I'm too damn tired to even push a vacuum over the carpet.  I thought I'd die cleaning the toilet. I'm just not there yet.

So this is what happens in summer rain, when the lizard needs its sun but makes do with lamps. When guys who try too hard realize there's no one watching the tap dance. When you have to face the truly boring notion that every day in your life now requires your best effort just to live it, forget improvement. That's a word I don't use in quite the same way as I did before. Sometimes I'm not certain where that word went.

The Death of Kiss and Slap?

Awhile back I wrote a post about the kiss and slap cycle, the proclivity for bad news to immediately follow good news here in my cancer world. A scan would show me cancer free and my pits would erupt with lumps; no cancer found in my lungs, and the old krakatoa tumor on my chest (Rest in Hell), would erupt with bloody fury. It got so that I'd hear the doctor say something positive thing and I'd just nod and say wait...

Lately though we might have broken the old cycle--or not, it's not definite yet. Post surgery, full on recovery misery, I found a goddamn lump under my right arm. But it wasn't typical, it hurt when you pressed it, and the first one I found disappeared. Angry lymph node. I tucked that away and kept it to myself. A few days later it was back but in a new place. Still hurt, I stayed silent. I watched and waited. This wasn't kiss and slap though--I felt like shit anyway. The surgery had gone well, but the slap was the fact that I felt like I was on a deathbed anyway. I didn't have to find another.

The second one went away. Fluid back up in the system, perhaps. A few clear days follow and then BAM, third time's the charm, a full on lump, but still hurt. That hurt is a good sign that it's an infection, it's an inflamed node, it's an inconvenience, not a killer. This time I spoke to the doctors, they said, it sounds infected. Let's watch. And so we do, we watch. We wait, we poke it to see if it hurts and cheer when it does.

Cancer will always be with me, and the lump will come that doesn't hurt, that is silent and confident. It may signal a need a change of chemo; it might be the last lump. I don't know. I don't wait around for it, but I'm vigilant. I want to know. I don't want to be the cancer equivalent of the woman who has a toilet baby.

But this may be the end of the kiss/slap cycle, and I welcome that. I'm growing up, I'm batting harder and pitching to hurt back. I thank cancer for what I've learned from the experience at the same moment I'm bitch slapping it down to manageable size. Balance is coming more easily, regret is slipping away from me. I think fondly of hamburger but it no longer moves me. I wish I could sing, but I never could sing for shit, so we're all better off. The people in my life who enjoyed me before cancer enjoy me now, in a different way, and I mean something different to them. I who didn't look or particularly act vulnerable now very much look it, and even allow people to know how vulnerable I actually am. I acknowledge fear, but I don't fear it.

The other night my dream was dominated by the landscape I was in, one like that Robin Williams movie, What Dreams May or something like that. I was in my after life, mine. I had a nice cottage in the mountains and a few miles away from the house, a ring of fast food joints representing about every kind of food done in a few minutes or less and I was in hog heaven. I personally love fast food because it's there, ready, and I can start scarfing in moments.

There are obviously different realities we all inhabit. I don't revolve in the world of my nieces and nephews with their own kids and concerns and extended families and arguments and what not--I'm just a subset that interacts occasionally, on our shared basis, our Priceness. Otherwise, they see the world and experience it completely differently than I do, as do my neighbors, and my friends, and everyone.

We do not move to the same groove and think alike, go the same places at the same time or have the same desires. Ergo, our worlds are very different, our experiences of them different, we are different. If we come together, we operate as subsets in each others bag of daily experiences, good, bad, indifferent.

Yet we all understand each other's triumphs and tragedies through the lens of our own experience and think of them as shared or discrete. I've been blessed with many people who understand cancer and why it sucks, and can understand the painful side of it, the part that occasionally needs someone else's kiss, whether physical or verbal. That's not something I'm conditioned to ask for, or to tell people that I need, so all along when it's happened (and thank you all, it's happened a lot), I feel the gratitude of knowing that I know great people.

The last two years have been a grind. A terrible one. I've been hooked like an ox to a water wheel and I walk in continual circles, some creep always behind me whipping my ass forward. At first I pulled hard and walked fast and was simply defiant, but I couldn't keep that up and it made no sense. I started to amble a bit. Let my head hang occasionally, and looked at the view I could make out. The chemo washed over me and I felt no change, but change was happening. I started to forget some small facts, names started to fly away. I struggled to remember things that happened to me as a kid, things that I'd never forgotten before.

Life is passing by me faster and faster, and this is ok. I'm readjusting to my post surgery life by sitting on the back deck in my rocker every day for a few minutes, watching my shade garden go native because I can't pull all the weeds. I start Physical Therapy this week because my left shoulder got effed up a bit in the surgical pull. I do not look forward to it. P/T people are like a cross between Scientologists and Bolsheviks, pulling all the fanatacism and none of the humor that each potentially represent.  YOU WILL MOVE THAT ARM LIKE THIS LIKE THIS LIKE THIS!

Every once in awhile, I think I'll close my eyes and nap and try to get back to that afterlife dream, that Popeye's chicken joint, the Inn-n-Out and Whataburger down the road. I never waddle home afterwards, you don't gain weight there! You just think a better life and there it is, kind of like here.

Miscellaneous: Cancer style

I'm now about two weeks into what I figured would be a month of recovery, post surgery. In some ways it's going really well, and in others, the picture is more mixed. I now have a home health nurse that comes everyday to change the dressing on my surgical site, and attend to an open area where the graft failed to take.  Of course, there had to be a new hole, after all, it's me we're speaking of here.

My stay in Bloomington Hospital of two days was alleviated by a great nurse named Nancy who was smart and engaging. It wasn't so bad. I had my own room, a big bathroom, no view, but more channels on cable than I get at home, so I watched House Hunters until I could no longer stand: "oh, it's so small", and "I don't like that wall color", and "but where are you going to put your clothes" (in a closet the size of a house in Mexico, of course).

What surprises me is how old I feel, how this surgery, this time, really knocked me back on my ass, physically. It will go this way, now. I'm not the guy I was in 2013 when surgery was like a whatever on my way out of Cancerland. I know more, a lot more, and I'm about 1/2 the size of that fellow. So I shuffle around the house in slippers and a robe, sweats sometimes, usually no shirt under the zip up sweater I got from my good friend Polly Prissypants on my last birthday.

I've been on percoset for pain control, but pain has been happily very limited. I use it more for the excrutiating sensitivity I feel when the home care nurse is cleaning some of my surgical site, where the nerve endings are raw, occasionally exposed, and not very happy about it. The percs, as you might imagine, put me to sleep, and what where naps are now more like day sleep. I'm living a semi-Dracula life, but I've mostly been able to sleep at night, too. I sleep so much of late that my blood pressure is tacking lower, which feeds into the sleep cycle.

So, I'm taking some measures to prevent falling into an accidental coma from my love of Big Z. A bit more coffee to raise my blood pressure, a small project each day to complete to keep me from being completely useless. Reading (between Venetian history and a sweeping survey of the Plantegenet kings and queens of England, and upcoming, Chris Bayly's book on the birth of the modern world, thanks to a recommendation from Michael Dodson, the very kind and competent Director of India Studies at IUB).

I am older, and I am older than my age, and this has happened so gradually that it didn't occur to me until I faced it wounded, tired, and needing to heal. So I find my strategies have to change to reflect this reality: I have to work in smaller units; I need to rehabilitate slower, more patiently; my goal posts must be closer together.

Tomorrow, I go back to chemo one week earlier than I expected--it's a good thing socially. This is where I get my biggest kicks of the week, usually. Messing with the nurses, running the joint, playing Salt-n-Pepa videos on the Ipad as they push the 5FU into me--it doesn't sound like much I'm sure but it truly is a place I feel safe, and confident, a place where I'm accepted with my quirks that draw no discernible judgement. More importantly, it's a place where we all have one goal, to save me. I hope you never have to find out how important such a place is to have in your life.

Lately, the mail has been bothering me because every iteration brings a new message from the insurance company. They've managed to request information on virtually every thing I've had done to me this year. They've contended, tried to reject, pushed, pulled and popped every objection they could find to just paying the damn bill. News flash, Anthem BC/BS: I have stage 4 terminal cancer. I will never be cancer-free. My cancer has not progressed, it's simply persisted--so please stop trying to reject paying for the chemo that has allowed me to achieve that balance over a highly aggressive killer strain, ok? It would do wonders for my overall health if you would just shut the fuck up and pay--I mean, come on--doesn't the CEO make a heft multi-million dollar salary with flagrantly enormous stock options? Please don't try to poor mouth me to an early grave. Trust me, you won't win.

Too, I'm now eligible for Medicare which takes effect in August. So, I'm getting all those mailings about signing up, choosing a presciption plan which I believe will be like getting plowed dry, no kiss afterwards. I want to tell them, thanks, but let's wait to do this when I feel more competent, and less overwhelmed, but the grind of bureaucracy never fully meets the reality of individualism. I will say this--they are being incredibly efficient about it, so it's best I think if I take my own advice, STFU and motor on through the process.

I have met reality, I think, and I'm likely better for it overall. I've had some dark thoughts about this recovery because my expectations of myself are not tempered by any parameter of Mark with Cancer--I'm still Mark who Aspires, not Mark who is OLD AND TIRED! I'm still the guy who wants so much to know Turkish better, to finally not have to look up declensions of French nouns, who wants to flesh out my ancient German from early undergrad, who wants to know the modern world.

In my mind, I'm mowing the grass and gardening, and laughing and talking and the dogwood tree in the backyard is beautiful as I'm doing all of that. Rally is running away and I'm chasing him full speed, and when I put a leash on him, we go to Cascades Park and ramble around the stands of trees for an hour or so, up and down the steep ridge. Oddly, that vision doesn't depress me at all, as I sit in a very different reality; it gladdens every part of me. That I had that life, at one point, and enjoyed the hell out of it, makes moving into a new phase more exciting, more interesting, more provocative. I wonder how I will accommodate this new Mark, how he will figure out the method to a full life going forward always, with cancer, like a marriage that works but no one knows quite how.

A Brief Message 'round Midnight.

I surprise myself again. Today I was down to two Percocet from the allowed six.  I'm not having pain so much as scrapes and chronic aches.

I've been sleeping a lot but dreaming of what?  I couldn't tell you. My head is alive in an alternate universe at the moment. If you see me driving a car, get out of the way.  I've been spending the days in my bed, which at the moment is charming and warm. I know I'll chafe against the bars soon enough; for now I just want to heal.

The day Charles brought me back from the hospital was glorious--80, light everywhere. Even the ruins of last year's garden looked good. Rally was sweet, he could see that I was hurt and he kept--and keeps--both company and watch. He treads me carefully.

I have a drain, a huge amount of gauze and pads soaking up the afterglow of surgery. I don't know when it will all fall out or be satisfied that it has drained and wasted me enough.

I was touched, very much so, by all the well wishes from so many healthy faces on Facebook. A simple recognition beats a complex social game every time. And simplicity is my new theme.

Today I saw the plastic surgeon for follow up, which meant tedious dressing changes, but he ended up 95% happy--5% witnessing a hole develop at the top of the graft where the muscle pulled away. It's to be monitored and cared for for the great ladies of Wound Care.  I have confidence.

That high percentage of satisfaction too means that I exceeded expectations yet again!  And he called me tough, which was a nice compliment.

Anyway, I thought a brief synopsis was in order and a bit of bragging and a big thank you for the real fuel that keeps me going.

The Joy in Mudville

It finally reached 70 degrees in Bloomington, which is the sign that we've nearly completed our transition from Winter to Spring. There may be freak snow, a bit of frost across the grass in the morning, but we are on our way to 100% humidity and 90 degrees.

I have always found the transition of these seasons to be difficult; my body feels like it's been cut in two and moves in different directions. This year, I suspect the difficult transition has made me constantly tired, constantly sleepy, sluggish when I'm up and diffident to depth when I sleep. My trach tube is full of the--wait for it--effluvia and difficult to deal with...for some reason none of it wants to leave. This is a nice house, it seems to say, and we are in it to win it. This, and only this, is why I fear death by choking,

The next surgery has its schedule--April 15. You pay your taxes, I pay my cancer dues. I'm apprehensive about the recovery period, how I heal where they take skin for grafting, how I heal where they put a drain in my back from the muscle they pull around the body, how it will be once Krakatoa, my personal volcano, is cut out of me. I suppose this is normal apprehension, but it feels like prediction--bad omens circle me (I've been watching I, Claudius, on Huluplus, so forgive me the Roman reference).

Good omens, though, come in the form of my niece who proposes to visit with her Batman-obsessed husband, and children, and another of my nieces, and potentially her boyfriend. So I get to make a lunch for Easter, an Indiana throw down of chicken and ham, potatoes in some format, maybe some steamed asparagus or cauliflower. The Easters of my far younger days were spent eating...ham, potato salad, those oddly sweet little gherkins, black olives from a can. All of my basket's chocolate in one day, of course, and part of my brother's.

Now that I can't eat or drink normally, I enjoy seeing other people do it. I'm like a tourist at a luncheon party, one who has visited before--I know where the landmarks are, and on this trip, I want to see how the natives live. I'm fascinated to see what people choose to eat, how much of it, what works and what doesn't in the cookery. As a cook, I want people to love what I make, though not being able to taste it is a great disadvantage--but no more so than those people on "Chopped" who inexplicably make sauces out of the grossest combinations of ingredients and then don't taste it before the judging. That's either excess ego or excess stupidity.

I haven't thought much of my life post-surgery this time. The last time, the major surgery, I saw myself as returning pretty much to normal, albeit 85% tongueless. I rather thought I'd just be Mark again. I woke thinking I looked the same, I acted as if I was him. I never want to go through the experience of such a let down again. So I don't think of what will be, I think of what is. I'll still have the Scream Mask mouth, I'll still drool, I'll still have the neck hole, I'll still have the numb feet. I'll still be the Frankenstein, and for a couple of weeks, my chest will resemble his rather full cloth. There will be surgical staples (ugh, gross), and drainage and whatever vulgarity cancer can throw at me.

What won't be--a tumor that is potentially releasing it's constant toxicity into my bloodstream and it's errant re-programmed cells into my bloodstream and lymph system. For this alone, everything is worth it. This is the first real step to control, given that frying me like a KFC special and bathing me in chemicals week after week have gotten us just to the point where this is possible. Control means the balance isn't just me on the light side of the seesaw. It means 70 is more possible than it was.

After two years of fighting, I'm amazed. That every day has required me to act and think 100% to the positive side, to physically ignore that I'm tired, to try to be part of life as it swims all around me. The surgery offers the possibility of a second gear, a place where I can rest a bit. By rest I mean my mind, the true battleground of cancer--there's the possibility I want have to manically support myself and cheer for myself and attaboy myself every damn minute of the day--that I can daydream, and wander and think and plan.

Lately, I've been walking in mud, living in Mudville, napping hours and hours per day. My mind needs some refreshment, some visual stimulation, something that the 14th Century, a biography of Catherine the Great, binge watching (rewatching) the X Files, or reading about Indiana's weird grasp of discrimination don't offer.

The joy in Mudville is that I've nearly waded through it to the outskirts. Where the normal people live. And if they chase me off with torches, so be it. My creators, in their shiny medical castles, will always welcome me back. I'm big business, and a whole lot of fun to chop up.

Looking for the Spring of Things

I am knee deep in garden porn, new variants of old favorite plants, bold colors that will lift my spirits and make my yard look better than the heteros who surround me. I know, it's not much of a brag, but you gotta do what you gotta do, and I gotta dig.

We are really about 3 weeks from prime digging time, and planting in this zone shouldn't take place before Memorial Day, but it always does. We really start to warm up in April, usually, though last year was not good. But May 1, and after, it usually moves from the tiny little mild Spring weather we have for 3 days, into humid and hot, consistently over 70, consistently annoying Summer. I say annoying because I burn, therefore I am.

This is one event, the digging time, that I look forward to all year. I put on headphones, I play The Smiths station or the Kylie Station or the Goldfrapp station on my Pandora list and just zone. I dig, fall to my knees, and pull the dead vegetation out of the clumps, break them up, move on. Dig, drop, declump, dig, drop, declump. It's a weird heaven, but that can't be fixed.

This year, my surgery now expected by the end of March, will take at least a month for me to normalize a bit afterwards; this interrupts my chi. This compresses my digging schedule into May, when I'd normally be early planting. In my state, in my old man-ism, the digging schedule takes place over two weeks or so--there's just so much I can do in a day, and I recognize that limitation. And this year my hagged out garden needs a lot of work, plus I finally plan to herbicide the shit out of it, because I can't keep up with how fast weeds grow when the rain is nice and steady and the temperatures are glorious, as they were last summer. Well, glorious as it gets around here.

Despite that relatively minor gripe, the entirety of the approaching time to plant gives me lift and optimism. Anticipation of pleasure, the wonderful running around looking for native Indiana species (my new passion), and a few of the old favorites (Asian lilies on sale at Lowe's for half-off after their normal flowering season has passed). This is the optimistic time when I conspire to fix a bed, or an area, and this year I plan to do a big fern planting in a new part of my shade garden and I'm so excited about his that I could pee.

I know I've written about his before but it bears repeating: I run on optimism. It's my gasoline, my internal fusion plant, and without it, I quickly revert to a worrying, fumbling, half-dead, idiot. I create, in my life calendar, reasons for it. I write this blog which reminds me of it. I tell people everything is fine when obviously I'd rather not look as I do, or live as I do, because those are just conditions, and talk counts when you're keeping your head up.

I have been both lucky and unlucky with doctors in this regard. I've met those who with one look wrote me off and refused to listen to me when I told them how unprofessional their attitude was--but of course that didn't make me patient of the year in their eyes--just another deluded patient. Yet in the relationships that count with doctors, I've consistently hit the jackpot. My oncologists, Dr. Kramer in San Francisco, and Dr. Dayton, here, have both proven to match and even exceed my own blue skyisms at times; when chemo works, an oncologist is truly a happy person to be around, and mine has worked wonders. To be clear, in my case, a wonder was living, and I'm doing that like villain.

It's been of late Dr. Dayton, whose joy in my upward ticks both amuses and inspires me, that has more than matched me in positive thinking. He's been the way I chart through what I hear in one place, read online, see in the New York Times, hear anecdotally, feel internally, wonder about with concern. And the point of this is that you need that person, that one person, who sits at the center of your health universe and helps you make sense of it all because it does not make sense.

Often enough, between insurance companies and doctor's offices, you need to translate variants of English that you didn't even know existed. In explaining procedures, their time needs, their expected outcomes and expected side effects, doctors often revert to Med School lectures at a verbal pace of whythefuckdoIhavetosaythisjustshutuplaythereandtakeitbecauseIknowbetterthanyoueverwill. In blue skyism the only possible answer to such a thing is: I don't think you do, but thanks for the laugh.

I continually find that the life of a cancer patient is so much more complicated than I ever expected. I had this idea that upon a diagnosis of cancer, one's life became like a series of Belgian tapestries, circa 14th century. A scene of shock, a scene of treatment, a scene of losing one's hair, a scene of recovery, a scene of an Odysseus-ish return to a new normal. It does not work like that at all.

So many roadblocks are thrown at you, so much pre-conception, so much judgment, that it shocks one. And then if the conditions you are working around are severe, like my inability to speak, it becomes a fucking nightmare. Here's an example: My stupid home health provider, who vends my enterals (food) to me will not take orders over email and I cannot speak, and I will not make Charles take a phone call when I can be dealt with easily. They claim email is insecure but you know what? The Secret Service will let the President have email but they will not let him have a commercial smart phone because-duh-they are incredibly easily hacked and data is incredibly easy to sweep from them. Yet because I cannot speak, I cannot work with them because I cannot work with them from an easily hackable fucking cell phone.

In fact, any health care provider will discuss your intimate details readily on the world's most monitored, hacked, swept, data-losing, platform, but will refuse to do so by email. Too insecure. I mean you have to laugh or you'd just buy a gun.

So, I see Dayton, and instantly, I feel better. I saw him Friday (yesterday as I'm writing this) and I still feel better about life. I feel better about the surgery upcoming, I feel more informed and more capable to deal with recovery, I know better what to expect. I like that he doesn't pretend to know everything, and that we can have a fun but informative conservation about the most important topic in my life--me.

I read garden porn and I know that all I want is to kill weeds and plant beauty and enjoy the benefits of both. I want to watch Rally schnoodle his way through the shade garden which he loves as much as the birds and insects have proven to love it too. Even with my interferences it's mostly just naturalized space, the wild violets prove to be powerful, but too pretty to just uproot every year.

At some point I'll be out with my Gator mini-chain saw hacking down those stupid shade bushes that are pissing me off, the stupid mulberrys that grow everywhere because birds shit everywhere, and my weed whacker, my wheelbarrow (a new one coming!) and my spade (a new one of those, too), and I'll be in hog heaven...I love it. I feel warm, I like to feel the dirt, I like to imagine where I'll plant what. I'll be thinking how much I like blue skies and how much I wish I'd know that about myself way earlier. It would have spared me much grief.

But that's life, isn't it? It takes a log to pluck the toothpick from one's eye.