Kate’s going to be in the hospital one more day. They want to be sure the j-tube is working, no leaks. A gastric function test today with contrast. Like making sure all the plumbing is in order after sealing the wall. Not sure what they’ll do if they find a leak.
Today it feels like I woke up in a Truman Show simulacrum, one focused on medicine, a Grey’s Anatomy in which Kate and I are a plot thread about medical issues affecting the geriatric demographic. Maybe I’ll drive out to Littleton Adventist this morning and someone there will tear a hole in the screen separating us from the cameras and crew.
Having Kate back in the hospital has flashed forward the bleed and its long aftermath, the second bleed, the pneumothorax. On the first day she’s gone my reaction is to be self-indulgent. Eat poorly and watch a lot of TV. Yesterday was hot dogs, ice cream and several sessions of Big Mouth, a Netflix cartoon about hormonal middle-schoolers. It’s surprisingly good, recommended by Ruth. Not sure why I have this reaction, marking her absence surely, but why self-indulgence?
Tom Crane’s guy.
I suppose those are denial strategies. Eat and forget. Watch and forget. Suppress. Repress. Good thing I have this bandage stripping habit. Wouldn’t want to get stuck. My inclination these days, these third phase days, is to be more forgiving of myself. As somebody said, if your compassion does not include yourself, you are not yet (something): fully compassionate, enlightened, realistic? Ah. Looked it up. It is incomplete.
The Cancer Moon is a sliver, headed toward a new moon. June 3rd will be the new moon, Kate’s surgery date. On June 7th I see Dr. Gilroy to discuss radiation therapy, probably get scheduled to start. By that time yet another Recovery Moon will be shining over Shadow Mountain. We had a healing moon last October after Kate’s bleed and a Recovery Moon in March following my flu/pneumonia.
A third recovery/healing moon makes sense to me. That lunar month will encompass Kate’s recovery from the j-tube placement and our getting used to this new method of getting nutrition for her. It will include much of my radiation. By the end of it we should both be in better places.
Rigel’s nose
Ruth came up yesterday. She pruned the Russian sage, flattened all the boxes for the trash (Chewy, Amazon, Option Care), and got Kate back into her sewing room. This morning she’s going to make pancakes, a cherry pie, and help me make chicken and leek pot pies.
We went to Sushi Win yesterday for lunch to celebrate my CT scan findings. Ruth had a Sushi platter. She ate it all. Dad says I have a teenage appetite. She does.
She’s a scholar, loving Mandarin and math. She’s an artist working in oils, photography, prints. She’s a cook and a good one. She loves animals, brushing Rigel and Kep each time she comes. Ruth has become a sweet, loving young woman. May it continue.
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.
