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.