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The old tumor Krakatoa has been replaced by multiple tumor-lettes, a couple of which spout drainage and I'll have to go back to daily dressing changes from Home Health which I loathe.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