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?