Under the Cancer Moon I’ve wrestled with the news of cancer returning. Death and its meanings. At the Journal workshop I wrote in one exercise, death has found me. I still feel that way, that this is a mortality signal with little ambiguity.
Even so, I’m feeling upbeat, happy right now. Why? CT scan showed negative for metastases. So did the bone scan. That means the reemergence has happened in the prostate fossa. Localized. An easier place to treat.
Ozymandias, Shelley
Death may in fact have found me, but prostate cancer may not be its agent. The word cure comes back into the vocabulary with these findings. If the radiation is successful, I’ll be a 72 year old guy with no cancer. Wow.
Peaceful this a.m. The imaging work is done. At least for now. Three days now with no medical interventions or doctor appointments. And sunny blue skies.
On Monday at we leave Shadow Mountain around 5:30 am to get Kate over to Littleton Adventist for her j-tube placement. She’ll be there over night. Since she’s stronger now, we’re not anticipating any major issues. This is laparoscopic surgery so the recovery should be minimal.
We got the first j-tube feeding accessories in the delivery yesterday from Option Care. Jumbo size plastic syringes for flushing. The j-tube will be a major change from the tpn. No more aspectic procedures. No more bag to carry. Not nearly as much risk of infection. And a consistent source of nutrition.
Looking up at the paneled ceiling tiles from the ct scan table was a tile made of plastic and full of butterflies. Leftside. On the right, another plastic ceiling tile of clouds. Between them the circular ct machine through which I was fed on a moving slide.
I’d drunk a bottle of orangia like liquid 45 minutes before, but getting the iv in for the additional contrast material was painful. The gal who poked me twice didn’t have it down. She, in her words, tapped out and got a new wrestler to come and put it in. The new nurse was an old pro. She twhacked my elbow crease, looked, then put the iv in place.
“You’ll have a warm feeling in the back of your throat, then you’ll feel like you’re peeing, but you won’t be.” An interesting introduction. Sure enough though the back of my throat warmed up, a flush of heat that spread to my groin. The dye working.
Osiris and early ct
“Take a breath and hold it.” That was the ct scanner. In case you didn’t get it there were little faces, one blowing air out, the other with plumped out cheeks. They lit up.
Took no time at all. When will it be read? You’ll have results in a couple of days. Oh. It’s Thursday, so next week. Oh, well. Been waiting this long. Gilroy’s out of town until next week anyhow.
When the first try for the iv went in, it hurt. A lot. Lying there on an imaging machine, in a hospital, a serious illness underway, I cringed. Will I have to have lots of these? I got back to the moment, looked at the butterflies, then the clouds.
Some heaviness in my walk. Taking out the trash for its delayed pickup. Memorial Day. Getting the Denver Post in its orange plastic wrapper. Putting it at Kate’s place.
The sun rise has begun to melt the frosty crown on Black Mountain. All conditions are impermanent, disappearing in the sun, blowing away in a Chinook.
Gabe called last night and wanted to know if I was coming to his continuation. Fifth grade to McCauliffe. I’m not sure, buddy. I have this procedure tomorrow. In his world fifth grade matters as much. I had already taken my thc for bedtime, tired.
It overwhelmed me. His need. Ruth’s. Who wants to go, but had planned to be up here today, to help us, the conflict hidden until it wasn’t. Jon’s navigating their worlds and ours.
My view on the ct today. The cancer is already there. This is just a pair of special binoculars that can peek inside the black box, see where it is. Once this gets read, a treatment plan will fall into place. Unless it’s equivocal, a finding I don’t want. I could know by tomorrow what’s next.
It’s been this kind of May. And it looks as if June will be cooler and wet, too, according to Weather5280. Good news for us, not so much for those lower down when the huge snowpack starts to melt.
Got further along on print Ancientrails. Am now in late 2017, quite a ways in. Then, print spool error. Again. Well. Gotta go back to whatever I did that solved it once. Tried so many things I’m not sure which one worked. Something did. For a while. Soon though. Then, I’ll take everything for three hole punching and decide what kind of binders I’m going to buy. Each folder with month tabs.
Also figured a way to unzip Superior Wolf and focus on Lycaon’s story. Don’t know whether I’ll follow up later on Christopher and Diana. The hunt for immortality is almost a cliche these days. And the central conceit of their story, a hedgefund group that funds Diana’s research, is not fiction anymore. Geez.
That means I’ve got months of work ahead, maybe years. My ikigai. A Japanese word that means reason to live. This article talks about ikigai in more depth as an explanation for Japanese longevity. Squares with my own intuition. Purpose keeps you alive and flourishing.
The Japanese have a lot about life figured out. Ichi-go, ichi-e is another favorite of mine. It comes from the Japanese tea ceremony and means each moment is once in a lifetime. No such thing as an insignificant experience with another person.
Sekkyakushi, 15th century, Muromachi period, Metropolitan Museum of art
Reading a book right now by the wonderful travel writer, Pico Iyer: Autumn Light, Season of Fire and Farewells. It’s a follow-up to his The Lady and the Monk, which I have not read, in which he recounts meeting Hiroko, the Japanese woman who would become his wife. He had moved to Kyoto to immerse himself in Japanese culture, sensing, as I do, that their approach to life is worth learning, perhaps adopting. Twenty-three years later he lives in Japan with Hiroko six months out of the year and six months in the U.S., caring for his mother and working for the New York Times. Recommended.
Each time I dip into some aspect of Japanese culture I find I want to know more. The MIA’s Japanese collection gave me a chance to interact with tea bowls, tatami mats, sumi-e, Buddhist and Shinto sculpture, put me deeper into my own Asian pivot.
Zen itself has not intrigued me, but I did follow Zen back to its roots in Chinese Chan Buddhism, a melding of Taoism and Buddhism. The Taoist aspect of Zen, and Chan. Yes.
Tomorrow. The CT scan. Probably the last of the imaging work. It will either show metastatic disease or a localized recurrence in the prostate fossa. If the former, one kind of treatment. And, prognosis. If the latter, 35 days of radiation and a possible cure. Hopeful, of course, that it will be localized, but aware that it might not be. In either case I’ll know. That’s been the hardest part of this time (well, no, that’s not right. The hardest part has been dealing with insurance and the hospital’s “benefits” office.), knowing the cancer has reasserted itself, but not knowing what that means for my life.
Will be glad to have this work done so I can move onto what’s next.
Both Kate and I have a weariness this Memorial Day weekend, one occasioned by the intensity of the last week. Kate got a schedule for her feeding-tube placement which ended three months or more of maneuvering within the practices of Lisa Gidday, Westermann, Gupta, and Smith. I spent Wednesday pleading with various parties to authorize tests that would let me get on with treating my cancer. On Thursday the bone scan and good Nick. On Friday the drive to Lone Tree and Gilroy’s wonderful, “The bone scan was clean as a whistle.” That’s enough for one week.
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.
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.
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.
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.
