Sigh

Leave in an hour for the mythical imaging services of Littleton Adventist. I’ll begin to believe in them when they put me on the slide and move me into the magnets. An unhappy yesterday. It had me reaching for distractions, not from the cancer, but from the American health care system.

I know it’s a cliche and I know the comparison is overblown, but I’m going to say it anyway. One of the three young women from Centura Health benefits said, when I asked to pay what my insurance company would have paid: “I don’t make the policy, I just abide by it.” Cindy and Vanessa, too. All of those I talked to except Amanda. I’m just following orders.

A fascinating book on the Holocaust dispelled the myth that the Germans who served as its agents were psychopaths or ideologues. No, they were just ordinary people who chose, over and over again, to do what they’d been told. These agents of denial are all following the arcane and often invisible dictats of bureaucracies built to serve themselves. In the case of United Health Care it’s about the bottom line. In the case of Medicare it’s about the rules. In both instances the clerks, the phone callers and phone answerers, the case managers, (I find myself wanting to put quotation marks around a lot of these words.), the administrators all sleep because they don’t make the policy, they just abide by it.

In neither case is the patient’s health the prime objective. The prime objective is what sustains the organization. You may say, what’s the alternative? I would say single payer health care. Why? Because in that situation it is the patient’s health that drives the system, it is the rule. Would it be perfect, without self-serving bureaucracy? No. Certainly not. But it would have as its raison d’etre the health of the country’s populace. That would make these frustrations much, much different. At least to me.

In the meantime we have a system that, not all the time, but frequently enough, puts people like me, desperate for some answers, in between dollars and health care. It also serves to dehumanize its agents who must again and again say, no, that’s not been approved. No, sorry, I don’t make policy, I just abide by it.

Health “benefits” from Centura called this morning. Hey, guess what? You know those scans? Not approved. What! Twice in two weeks? What’s going on?

abdominal snowman

In spite of being the patient, hereinafter to be known as the victim, of our health care system, I was having a hell of time accessing any of it.

I don’t like phones. I like to see the people I’m talking to, even if I know them. It’s a thing and I’ve had it for decades.

This morning, however, was a phone morning. I called United Health Care. Nothing had been submitted for approval. Say what? It’s the day before these scans which were ordered last Friday. Who submits these things for approval? The doctor.

Anova Healthcare. Amanda, the heroine of the morning, or good Amanda as I think of her now, answered. The Littleton office handles authorizations. OH, I thought. She’s going to make me call them. Nope. She called. Vanessa, who has responsibility for my case, would call me back. Amanda had talked to the manager of the authorization department. I assume the same one that failed to get my axumin scan through.

Anyhow, Vanessa never called. I got a call again from Centura where I learned of another authorization hurdle. It’s internal to New West Physicians and focuses on Medicare claims. Oh. AARP Secure Horizons, which Kate and I have, is a Medicare advantage plan administered by United Health Care. Apparently this is the first point of contact with potential payors.

At the VRCC, Jan. 2018

Cindy answered. I’m sad and a little scared. Can you help me with this? The doctor ordering the test marked it as routine and Vanessa (bad Vanessa) only sent it to them yesterday at 3 pm. Oh, come on. The doctor had to change routine to urgent. Could you call the doctor? No, we usually don’t do that.

OK. Back on the phone. This time Amanda again. Answering machine. I told her what Cindy said. Amanda called me back in a short time. She’d already talked to Cindy. (Good Amanda) The bone scan is authorized. The CT is awaiting a decision. We’re half way there.

Here’s the thing though. All these phone calls, which took me all morning, were made by me, the victim. Ratcheting up my stress level each time. And, the result, which I sought all morning, was to get back to where I thought we were to begin with.

This left me with my head in my hands, talking to Kate at the dinner table, saying often, I don’t know. I really don’t know. A sort of ringing and head pressure came and went, my body trying to adjust itself to the feelings coursing through it.

I’m glad I’m not anxious, not much anyhow. But, I am stressed.

Tear Down That Wall

Beltane                                                                        Cancer Moon

cancer who decidesNo scan. AARP Secure Horizons denied payment. When I asked how much it would be as a self pay. Pet scan, $2,600, axium dose somewhere between $1,000 and $3,000. Nope. And, I made the decision for the same reason AARP probably did. The scan’s accuracy is around 60% and that goes down the lower the PSA. My PSA is well above the reemergence marker of .2 at 1.3, but it’s still pretty low for imaging studies.

What makes me angry about this is that I scheduled this scan on April 25th. That’s twenty days ago. If they’d come up with these problems even last week, I’d have had a chance to call the insurance company and Dr. Eigner, Dr. Gilroy, see if something could be done; or, if it was clear no payment option existed, what new imaging studies I could have. Now I still have to do all that, but 20 days after I put this study on my calendar. Meanwhile those little cancer cells don’t care. They just go right on chasing immortality at the expense of my health.

I had an image yesterday of our health care, that is, doctors, nurses, labs, hospitals. The entire province of folks and structures who provide medical services. They’re all there, most of them competent, capable people who got into medicine to help people, to cure illness. Now. Imagine all of those people and their support behind a huge wall, a really huge wall, the best wall possible.

cancer universal health careOn this side of the wall, where you and I are, is the money used to pay everybody in medicine. If you are a one percenter, there’s a special gate you can walk through anytime you need it. You can access all of the excellent care that is available. If you’re the rest of us, no money passes through the wall unless several corporate, bureaucratic entities and individual people within them, say yes. Those entities include private, for-profit health insurance companies, medicare, medicaid, non-profit health insurance, banks, credit card companies.

According to this CNBC article, $3.4 trillion dollars pass from the money side of the wall to the health care delivery side of the wall each year. That’s $3.4 trillion. In this interesting nyt article, author Matt Bruenig makes a case for treating health insurance premiums that employees pay for company insurance plans as taxes. He makes this claim: “Moving from our system to a European-style system would make our overall system of taxes and health insurance payments much more progressive for the majority of Americans, because the elimination of private health premiums would more than offset the rise in formal taxes for all but the wealthy.”

cancer insSuch a shift would eliminate all of the corporate gate-keepers who have an interest in profit for their company. Perhaps they could all go work for the TSA and use their previous employment experience to annoy the hell out of travelers.

Would such a change mean I get my scan? Not necessarily. There would still be assessments made about the appropriateness of particular care; but, those decisions would be made by people who have my health and the health of our medical system at heart, not the wallets of investors. In that case I’d trust a decision to withhold the scan as a considered one based on those criteria, not on what’s best for United Health Care’s bottom line.

Health Care in the USA

Beltane                                                                    Cancer Moon

climate change vollmanHere is a cautionary tale about health care. On April 24th or 25th I scheduled my axumin scan for today. That’s twenty days ago. It’s purpose is to tell where my cancer reemergence is located and to help stage it. This after the rise in PSA caused consternation for both me and my urologist, Dr. Eigner. I was glad we could get it on the calendar so quickly.

Yesterday, after we got home from Dr. Gupta’s there were two messages on the phone. One was an “urgent” message from the hospital health benefits department. The double speak in the system unveiled itself when the “benefits” person told me they did not have approval for my scan. This is at 11:30 am the day before the scan. Eigner didn’t get the information to the insurance company in a timely fashion, they said. The insurance company, which claimed to have 72 hours to make a decision couldn’t make one in time.

I could come in today, they said, and sign a waiver for self-pay and await the decision or I could reschedule. If you recall, the axumin isotope is in limited production. The hospital only gets a dose once a week. There was no certainty about when I could reschedule either. They put me in a box by waiting until midday of the day before the scan. It’s possible the insurance company could deny it. It’s new, though not experimental.

axiumShould I go in today, sign the waiver, and keep my appointment with the radiation oncologist on Friday? When I told Eigner my PSA rise, he said, “Get another PSA done and get into see me ASAP.” A post-prostatectomy rise in the PSA to .2 is a biochemical recurrence. That’s the clinical definition. Mine was at 1.3. Everyone I spoke with had a sense of urgency about this. That made me have one, too.

I’m going in, gonna sign the waiver. My concern level, for myself, is high. I’m distracted. An occasional feeling of dread passes through me, floats my stomach. It’s fear of the unknown. Though I’m not afraid to die, I’m not eager, either. In this case it seems that time matters. At least to me.

I did not need to worry about money, too. This problem cranked up my anxiety level by putting another weight on the scale. Not. Needed.

Important NYT Article

Beltane                                                                                        Rushing Waters Moon

nyt, may 2019             I’ve included several brief quotes here, but if you have time read the article. It’s not long. What is remarkable about it is its analysis of the gap between current political institutions and the passionate concern of young folk and those of us who know climate change is already well upon us. Something’s happening here, to quote Buffalo Springfield

“…the squabbling and endless recriminations in Westminster are just a particularly farcical version of a global phenomenon. The world’s political classes are, increasingly, rendering themselves almost completely irrelevant in the eyes of their constituents…

Young people even in rich countries like America and Britain, terrified of what the world will look like when they are in their 50s and the current governing elites are safely dead, are increasingly willing to embrace extraordinary measures. In both countries, more young people are questioning or rejecting capitalism itself…

The kind of vision in public works and collaboration that no more than a few generations ago created the United Nations, welfare states, space programs and the internet now seems inconceivable to the richest and most powerful governments on earth, even if the very fate of the planet depends on it…

The last 30 years or so have seen a kind of war on the very idea of visionary politics. Where ’60s rebels called for “all power to the imagination,” the consensus of the opinion makers who took over as those social movements sputtered has been precisely the opposite: The very idea of unleashing the human imagination on political life, we are consistently told, can lead only to economic misery, if not the gulag…

“…with scientists warning us we may have precious little time before rates of planetary warming lead to irreversible consequences, the one thing that seems clear is that refusal to engage in this kind of imaginative exercise is the real danger.”  nyt, may 2019

Long. Strange.

Spring                                                                      Rushing Waters Moon

whatWe hit month 7 since Kate’s bleed yesterday. (To quote the Grateful Dead.) Procedures and imaging. Trips to the emergency room. Trips to doctors. The gradual shift in roles at home. Things have gotten clearer, some solutions have appeared, but nothing certain right now.

I remember saying to Rabbi Jamie in October, “Three weeks! It’s been three weeks. I know a lot of people have it worse, but three weeks…” Kate had been at Swedish for two weeks and Brookdale for one at that point.

As we enter the eighth month of Kate’s ordeal, I believe we’ve found a useful rhythm, a way to be together as this all winds its way toward whatever conclusion can be had. We know who does what. We’ve made some gains towards healing her illnesses. There’s a community of folks, wide spread, from Saudi Arabia to the western burbs of Minneapolis, to Singapore who care about her, about us both. The dogs, fortunately, have been healthy the whole time. A whole winter has come and gone.

The Celts originally had two seasons. The fallow season that began on October 31st, Samain, and the growing season which begins on Beltane, or May 1st. Here’s to a hope that the growing season, which starts in two days, can release its magic for Kate’s continuing improvement.

Rigel and Kep

Rigel and Kep

Rigel continues her odd habit of eating a bit, then going to the back door, which is mostly glass, and looking outside. She stays there 30 seconds, maybe a minute, turns around, comes back and continues eating. Kep, or Kep the Inhaler as Kate has dubbed him (she just finished a book that had Vlad the Impaler as a key character), finishes first, always. Gertie is pretty fast, too, but not as vacuum like as the Kep. She’s blind in one eye, it has the cloudiness of Odin’s, missing a canine, and has a bum left knee but she wags her tail, runs up the stairs to the loft, and can still catch a treat thrown directly to her. Dogs understand wu wei, perhaps Lao Tze learned it from a dog.

Kate’s coronation begins today. She gets the prep work done for four crowns. Sjogren’s, which dries out the mouth, reduces saliva, the natural mechanism that fights tooth decay. Since 1994, we’ve been on our own well, too, so no fluoride. And guess what? We’ve maxed out our dental insurance. Sigh. Whenever I’ve gone in for a crown, I’ve had an old hymn as an ear worm, “Crown him with many crowns.”

gunSynagogue shootings. Mosque shootings. Church shootings. I’ve not read of any Hindu temple shootings, but if they’ve not happened, it seems inevitable.  A Southern Baptist clergy said, “…no one should be gunned down in worship.” NYT  Well, No one should be gunned down. Not in school. Not at worship. Not in a McDonalds. Not at a mall. Not a college. The gun is a curse on our culture and the NRA is its pimp.

When will we take on the NRA, the terrorist organization responsible for more American deaths than Al Qaeda, ISIS and all terrorist attacks worldwide since 1995? According to the National Consortium for the study of Terrorism and Responses to Terrorism, 3,685 Americans have died from terrorist attacks worldwide between 1995 and 2016, with 2,908 occurring on 9/11. In 2017, 39,773 Americans died in gun violence. NYT. That’s right, 10 times the number of deaths in only one year! No wonder the world shakes its head. We are, in many ways, our own worst enemy.

 

 

 

No to impeachment

Spring                                                                             Rushing Waters Moon

abyssJupiter hangs west of the Rushing Waters Moon while Antares sits below it, also to the west. Black Mountain has a faint reddish glow as  dawn sun pushes up the Shadow Creek valley. In this light our lodgepole pines look lush, a vibrant healthy green against the red-tinted Black Mountain. Another Rocky Mountain morning.

Made corned beef and cabbage last night using the Instapot. I can’t say why I like this appliance so much, maybe the idea of using a pressure cooker at altitude. This was on Kate’s list of meals for me to cook this week. Strangely liberating, having someone else come up with the menu.

Got a call from Anova Cancer Care last night. A warm young woman. We scheduled an appointment for May 17th, hoping that’s out far enough for me to have had my axumin scan. They want a cd of it. The docs at Anova are radiation oncologists. Who wants to need an oncologist? Nobody. But, to have them available and experienced when you do. Pretty damned valuable.

Impeachment. A bad idea. Trump needs to be invalidated at the ballot box. Impeachment and all the hoopla surrounding it would only embolden all the creepy crawling things wearing those red hats. Vigilantes at the border. Proud Boys gearing up to attack the liberal left. McConnell. Republicans who have been Jim Jonesed by the orange tumor on our democracy. The regular white folks who think putting others in their place, domestically and abroad, is what Americur is all about. The judges who somehow believe in the infallible words written in the constitution, not by founders who were complex and nuanced, but by the almighty herself working through their pens. We need all these folks to suffer defeat in the democratic way, in an election, a fair election. Which might be more difficult to pull off than we imagine.

 

 

Spring                                                                                   Rushing Waters Moon

Meanwhile, on a Jeep in front of me on the way home with Kate:

modified

Another sticker I couldn’t get a good picture of, same Jeep: The second amendment is my gun permit.

Bernie Madoff rather than Jesus in the their hearts

Spring                                                                              Rushing Waters Moon

read this article in the NYT. wrote in on comments.

This:

“Well. Retired Presbyterian, UU clergy here. It was a used donkey that Jesus rode on Palm Sunday. He turned the tables on the money lenders. In Luke he’s quoted as saying: “…The Lord has anointed me to bring good news to the poor. He has sent me to proclaim release to the captives and recovery of sight to the blind, to let the oppressed go free…” Biblical. You can question the Bible, but these folks tend to want you to abide by it. Often think it’s the literal word of God. If they’re right (and I don’t think so), they’re in trouble with their God. If they’re not right, it doesn’t matter and fleecing rather than shepherding is just another Amway scam run by someone with Bernie Madoff rather than Jesus in their heart.”

A hypothesis. The long, very long history of clergy sexual abuse.

Spring                                                                    Rushing Waters Moon

I wrote to the author of this Washington Post column, Pope Benedict shows how the Catholic church went so horribly off-courseHoly_Orders_Picture-cropped2.

Hello, Mr. Drehle,

I’m a retired Presbyterian clergy. I appreciated your comments about Benedict stepping out of the shadows. Problematic to say the least. And, what he said. About all this being the fault of liberals and the sexual revolutions. I mean, come on. Doesn’t pass the most cursory examination.

But. Here’s a matter that has bothered me since the beginning of this latest chapter. It’s my hypothesis that this kind of sexual abuse has existed since the beginning of the R.C. Probably apexed in the Middle Ages.

Sexual abuseWhy? What we know now about sexual abuse is that it often (usually) involves an authority figure and a subordinate. Sexual desire hasn’t waned in the last two thousand years, I’m sure of that. And the Catholic churches presumption of holy authority and that mediated through its bishops and their clergy trumps even the boss/employee relationship, the coach/athlete relationship, and the doctor/patient relationship.

I don’t have evidence for this, just the knowledge that the power dynamics were even worse for congregants from the time of the R.C.’s formation through at least the age of enlightenment.

I’m writing you to see if you know anyone else who’s come to a similar conclusion. And, if not, shouldn’t somebody be on this? If true, and I’m pretty sure it is, it would put the lie to any defense like Benedict’s.