We all walk ancientrails. Welcome to the journey.

Maybe this summer…

Written By: Charles - May• 25•19
The Cancer Moon has gone to last quarter

The Anova Cancer Care office has an entrance opening onto an asphalt parking lot. It’s in the corner of a large commercial building and looks like all the other non-medical companies in the structure. Glass, aluminum, tan colored stone facades.

The waiting room has a small refrigerator with soda and bottled water, snacks, and a round table with Prostate Cancer books arranged neatly on it. Carmela, the receptionist, who knows everyone’s name, asks about Irish Wolfhounds. I have on my Great Lakes Irish Wolfhounds sweat shirt.

They’re the largest dogs, right? The tallest, yes. But not the heaviest. We had a lot of them. Do they eat a lot? No, not as much as you’d think. Carmela has gray hair, but looks to be in her early fifties. She’s wearing an unusual layered frilly top. She apologizes. This is considered an office visit so I’ll have to collect a co-pay. Of course.

Then we wait. Kate’s reading a Parker book, a mystery of sorts. I’m reading Pico Iyer’s book about living in Japan, Autumn Light.

Charles. It’s good Amanda. Go to your left, please. I turn to my right even though I heard her. Oops. A bit distracted, I guess. After all, I’m going to hear the results of the bone scan which is one component of the imaging work. Do I have metastases in the bone?

Dr. Gilroy, who likes shirts with plaid patterns, comes in. I’d noticed a scan image on his computer when I entered the room, wondering if that was my insides.

Well, the bone scan was clean as a whistle. No mets. I want to jump up and down, but I say, thank you. Following with, the CT has been approved.

Dr. Gilroy. The auths. We can order, but the insurance company. Well. He shakes his head. Frustrated. The authorizations part of our tangled web of a health care system disappoints all parties. The only exception? The small groups of office workers who enforce them and the companies that profit from denials.

I’ve prepared a folder filled with documents about how to mount an axumin scan appeal, ready to go toe to toe with New West authorizations. I think we can make this happen if we need to. Dr. Gilroy shakes his head.

Let’s wait. If the CT scan is negative, then we’ll know it’s a localized recurrence. If the CT shows a lymph node really lit up, we’ll know that’s a target. Only if the CT is indeterminate will we consider the axumin scan. It’s easier for us, because it’s one scan and done. I put the file back in my lap.

Later on a call from Centura Health and my CT goes on the calendar for May 30th, next Thursday. Gilroy’s out of town, but will be checking in. If, he says, the scan is negative, we’ll schedule another office visit to discuss radiation for the prostate fossa, the spot where that corrupted organ used to lie. He surprises me when he says, That’ll mean 35 visits here. Not the Cyber Knife, 3-5 visits. 35 sessions is the usual radiation protocol. My friend Dick Rice had it. Our house cleaner, Sandy, had it.

In three days it will be 8 months since Kate’s bleed. They’ve been difficult. With Kate’s feeding tube placement scheduled for June 3rd and my second, probably last, imaging work next Thursday, we may be emerging from the trenches.

Kate’s already back to some level of normalcy. Walking more, loading and unloading the dishwasher, cleaning up after I cook. In the most hopeful scenario for me, Dr. Gilroy’s talking cure. Maybe sometime this summer we can take a pause from medical interventions. Would be nice.

Simmer Down, Now

Written By: Charles - May• 24•19
Most of the time, I’m here

Cindy called shortly after I wrote the post below. Cindy was the young woman I talked to at the New West Physician’s medical authorization department. That was on the telephone day, Wednesday.

Your CT’s were approved. She was pleased, I could tell. She had helped me. I felt cheated, though. Have they been scheduled, she asked. Yes, I said, my teeth together, they were scheduled for today. And felt bad. Thanks, Cindy, I appreciate your help. You’re welcome, have a great rest of your day.

It’s a fine line between aggression and assertiveness, a line I cross often, too often. Here’s a paragraph from Pema Chodron that’s given me a new tool for helping stay on my side of the line:

Staying in the Middle
As a way of working with our aggressive tendencies, Dzigar Kongtrül teaches the nonviolent practice of simmering. He says that rather than “boil in our aggression like a piece of meat cooking in a soup,” we simmer in it. We allow ourselves to wait, to sit patiently with the urge to act or speak in our usual ways and feel the full force of that urge without turning away or giving in. Neither repressing nor rejecting, we stay in the middle between the two extremes, in the middle between yes and no, right and wrong, true and false. This is the journey of developing a kindhearted and courageous tolerance for our pain. Simmering is a way of gaining inner strength. It helps us develop trust in ourselves—trust that we can experience the edginess, the groundlessness, the fundamental uncertainty of life and work with our mind, without acting in ways that are harmful to ourselves or others. Pema Chodron.

Bones Scanned

Written By: Charles - May• 23•19

At 8:30 am this morning Nick, a kind nuclear med technician at Littleton Adventist, swabbed the crook of my elbow and took a needle from a lead-lined box. It contained radioactive isotopes of calcium. Makes sense for a bone scan. With a quick, painless insertion he sent the isotopes into my blood stream. Took thirty seconds.

“Come back at noon. Drink 32 ounces of water. Be sure to use the bathroom before you return.” I did that.

Kate and I left at 7:20 am. There was a heavy fog on Hwy 285 going downhill. It struck me as an apt metaphor. This time between the discovery of my rising PSA and getting data about the cancer puts me in, as I said yesterday, a cloud of unknowing. Today we traveled through it, paying attention, careful attention to brake lights, possible crashes.

The bone scan will lift a bit of the fog, make the path from here a bit more clear. But. The CT scan was not approved yet. Ironically, I stopped at the Post Office on the way home to pick up a certified letter. It was the denial of coverage from New West physicians for the axumin scan. Out of the fog into the fog.

Nick had me remove my belt, all the metal from my pants, my glasses. I could leave my shoes on. Hearing aid? No, the machine won’t bother it. I laid down on the slide, a curved piece of metal. Would you like a warm blanket? Yes. (This would prove to be a mistake.)

We velcro your arms to your sides. That way you don’t block the scan. Oh. The straight jacket like cover went over the warm blanket. Are you claustrophobic? Yes. Hmmm.

This was the mistake with the warm blanket. Since as near as I can discern, my claustrophobia came into existence during time spent in an iron lung as a toddler, heat makes it worse. The claustrophobia comes when the box like device with the screen attached comes down within an inch or so of the nose.

It’ll be there for about four or five minutes. OK. I’ll close my eyes.

A bone scan. Not me.

So here’s a very human anomaly. That scanner scared me more in those five minutes than that which it sought to find. Cancer. Weird. I held it together, but there were moments when my muscles tightened and my stomach clenched. Also, I had this urge, a strong urge, to open my eyes. Which I did a couple of times. And quickly closed them.

After the seventeen minutes in which the scan covered my body, Nick said he’d go see the radiologist. He might need other shots. He didn’t.

I thanked Nick for his kindness. Well, we try. The folks that come to see us are not having a good time. I’m not. And your kindness made this part easier. I didn’t say, but I could have, I’m driving through heavy fog right now.

Nick assured me that the radiologist would read the scan right away and that it would be ready by late afternoon. That’s in time to inform our appointment with Dr. Gilroy tomorrow. At least we’ll have some data.

Sigh

Written By: Charles - May• 23•19

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.

Written By: Charles - May• 22•19

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.

From a local facebook group

Written By: Charles - May• 22•19

So I get home this morning and my dog is laying on my porch covered in snow and mud and has a rabbit in his mouth. He’s not bloody, just dirty.
Now, my neighbors raised these rabbits for 4H and have blue ribbon winners. I instantly knew it was one of theirs. So I get the rabbit away from my dog, I take it inside, wash all the dirt off and before my neighbors got home I took it over, put him back in the cage and went back home.
Not 30 minutes later I hear my neighbors screaming, so I go out and ask them what’s wrong?
They tell me their rabbit died three days ago and they buried it but now it’s back in the cage. 🐾🤷‍

Celebrate

Written By: Charles - May• 22•19
From this last October

On Kate’s caring bridge site I posted about her upcoming surgery, June 3rd, to implant the feeding tube port. This represents the end of a long winding process requiring TPN, ct scans, visits (when we could get them) to the pulmonologist, to Lisa Gidday, our primary care doc, to Westermann, the rheumatologist, and one last visit, on May 29, to the cardiologist.

Ed Smith, the surgeon said, “Well, at least I don’t we’ll do you extreme harm now.” Reassuring. I give him props for insisting on the TPN, for Kate being as prepared physically as she can be for this procedure. I thought he was stalling. “Well, we’ve put this off as long as we could, haven’t we?” he said. First, do no harm.

To this, May 2019

Once the j-tube is in and Kate has it for ongoing nutritional support the remaining unaddressed challenge will be her lung disease. For the summer.

We had a t-bone, risotto, and asparagus last night to celebrate getting a date for the j-tube. Somehow I over-cooked the t-bone. Still good, but we like’em rare, not medium. Guess who cleaned up? Kate.

It feels so good to see her walking, doing ordinary chores. Laughing. Gaining weight. A victory already.

Gilroy on Friday

Written By: Charles - May• 21•19

Dr. Gilroy put me on his schedule for Friday. I’ll have had the ct and the MRI the day before. Hopefully this visit will begin to push back the veil. There may be a treatment plan or there may be a need to fight for the axumin scan. We’ll see.

A Cloud of Unknowing

Written By: Charles - May• 21•19
Dante Luca Signorelli (Own-work-Georges-Jansoone-JoJan-Taken-on-30-April-2008)

Another big medical week. But they all seem to be right now. Minor: had my teeth cleaned yesterday. “Your teeth are so clean.” Hygienist. So one part of my body’s in good shape.

Kate and I visit Ed Smith today. He’s the surgeon who will, we’ve been hoping for several months now, implant the j-tube. The pulmonologist has cleared her, the last remaining hurdle. I’m expecting (hoping?) that we will schedule a date.

On Thursday I have the standard of care imaging studies for prostate cancer reemergence, a ct and an mri. The axumin scan is a pet-scan. In a followup visit to Dr. Gilroy, the radiation oncologist, we’ll see what these tests have to say and revisit the axumin scan if it seems like it would increase the accuracy and efficacy of treatment.

William Blake

Each step on this journey makes things a bit more real. A bit more sphincter tightening. Right now, I have no idea where I am, except that I’m in a place I’d rather not be. No diagnosis except a rising PSA. No treatment plan. Just the knowledge that somewhere in my body are cells working against my survival.

Death Hendrick Andriessen 1607–1655

It’s a strange place to be, ethereal, filled with fantasy. They’ll find distant metastases and I’m doomed. They’ll find a small, localized tumor, zap it with a Buck Roger’s ray gun. I return to a new life free of cancer. The disease is slow, but not fully treatable. I’ll have to live for years with an invader slowly gaining more and more territory. A losing game of go.

I’m sleeping well, not overly distracted or anxious. Yet this is a moment of existential angst, the sort of moment that defines existential angst. Dante helps me see it more clearly. Here are the famous first lines from Canto One, modified just a bit.

Two thirds through the journey of my life
  I find myself within a forest dark,
  For the straightforward pathway has been lost.

Ah me! how hard a thing it is to say
  What is this forest savage, rough, and stern,
  Which in the very thought renews the fear.

So bitter is it, death is little more...

But, since it came to good, I will recount all that happened there.” This is v. 4 of the Canto and my hope. We’ll see.

May 21

Written By: Charles - May• 21•19