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.