Chemo Brain is Real

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

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

I also can't remember his last name. 

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

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

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

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

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

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

Blogging Sunday: what's next

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

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

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

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

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

A Small Crossroads Meets A Big Truck

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

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

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

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

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

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

Hiding Behind Yonder Dollar...

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

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

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

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

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

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

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

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

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

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

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

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

151

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

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

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

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

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

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

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

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

OK, I Surrender

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What Happened to 2015?

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

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

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

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

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

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

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

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

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