So. Saw Dr. Gilroy, the radiation oncologist. His office, appropriately, is close to Skyridge Hospital where I left my prostate 4 years ago. Gilroy is a man in his 50’s, a friendly broad face, short cut but curly hair, a thick, but not fat body, and a kind demeanor.
Still hoping to dodge the bullet
All the folks at Anova have been kind. Which helps. Kate was there, sitting second chair this time, as I’ve done for her appointments over the last year. These patient rooms are the same. An exam table, two chairs for the patient and support person, a stool and a small desk projecting from the wall, a computer. Sometimes drug company posters on the wall: Pulmonary Hypertension and You, How to rate your bowel movements, Glaucoma and the eye. Bland wall colors. Sensible carpet. A sense of depersonalization. The focus is on you, the sick one. Or, the maybe sick one.
The news so far is sobering. The rise from .1 in January of 2018 to 1.3 in February of this year is rapid according to Gilroy. The velocity of the rise can be an indicator of the severity of the reemergence.
“Have you had a digital exam since your prostatectomy?” In this case of course digital means, with a digit. “No.” “I need to do one.” “Oh.” “Drop your trousers and bend over the exam table.” And so I did.
He could find no nodules. Had he found one he said it would have indicated the likelihood of a localized reemergence. Rapid velocity. No digitally findable nodules. Could mean metastases.
Next up are the traditional imaging techniques. CT and MRI. The MRI scans bones for mets and the CT looks for what I’m not sure. Next week sometime.
I’m not afraid to die. But. I’m not eager either. The gap between those two does produce a quickening, a stomach drop, but I’m not experiencing, nor do I expect to experience, dread. Into each life a little death must fall.
It’s been warm, even hot down the hill. When I went to the Avengers movie, it was 85 when I came out. Largest temperature swing I can recall. It was 66 when I got back to Shadow Mountain. Not a fan of the heat.
Kate went to the board meeting at CBE last night. She stayed for the whole time, three hours. Her stamina has improved a great deal and she’s using her rollator less and less.
Just put the all season tires in the truck. Headed to Stevinson’s this morning to replace the snow tires and get some dye in the air conditioning system. We’re gonna fix the air conditioning one way or the other this time.
Then, Anova Cancer Care at 12:30. Told Kate yesterday that I want definitive treatment rather than quick treatment. My anxiety level is low. Doesn’t mean I’m not feeling some stress. Of course I am. Just not projecting outcomes, results. So, Dr. Gilroy, here we come.
I did see this yesterday, Judge rips insurance company: “A federal judge blasted UnitedHealthcare last month for its “immoral and barbaric” denials of treatment for cancer patients. He made the comments in recusing himself from hearing a class-action lawsuit because of his own cancer battle — and in so doing thrust himself into a heated debate in the oncology world.” The issues are slightly different, but guess which insurance carrier I have?Immo
Saw Avengers: Endgame on Tuesday. This was to distract me from being pissed at Centura Health, United Health Care and whoever else dragged their feet, waiting until the day before and the day of to interfere with my planned axumin scan. It worked. I know who dies in endgame, but I won’t tell. It’s a long movie and I’m not a super fan, so I know I missed a lot of the inside jokes and things being tidied up from the multiple movies that preceded it. I did, however, come out calm. The universe had been returned to mostly normal, seder had been restored. The underlying reason we like superheroes, mysteries, thrillers.
By that evening I was sufficiently chill to sleep through the night, something I almost never do. I spoke my mind to the health “benefits” folks at Centura Health, distracted myself, got some perspective, and slept just fine. Not deep breaths or wonky meditation, but workable.
Yesterday I focused on an organ, the eye. Played space invaders for the nice man, or, as they insist on calling it, a visual field test. My field of vision is holding steady, no glaucoma encroachment. Pressures are good, the hole in my cornea is, as my ophthalmologist says, is patent. That means it’s still draining the fluid for me. Part of me, an important part, is functional and remaining so. With help from latanoprost and good surveillance.
Joy
On Friday I see the Anova Cancer Care folks. This will be a somewhat changed consult since I didn’t do the axumin scan. I plan to ask them what sort of imaging work will make their work optimal. If they believe in the axumin scan enough, I may agree to pay for it. $4,000 versus life? Not a tough call.
After lungs on Monday morning, a crowning achievement on Monday afternoon, the scan hooha on Tuesday, the glaucoma checkup yesterday, and the oncologist visit tomorrow afternoon, we’ll have finished off another very medical week. Something fun is in order for the weekend.
Simcha. I’m coming to believe that joy and gratitude may be sufficient to get us all the way through life. I don’t mean silly puffy gladness, or just saying thank you reflexively, but heart and mind illuminating joy and deeply felt gratitude.
What gives you joy? Be grateful for it. I’m gonna call this the Doris Day lifeway, worthy of emulation.
No 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.
On 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.”
Such 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.
Here 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.
Should 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.
Spent yesterday and Saturday reorganizing the loft, continuing work in the Intensive Journal. Oh, and made a meatloaf. Better than my mom’s. I printed a copy of Jennie’s Dead as it is so far, about 50,000 words, found my third draft of Superior Wolf, and pulled out the Phantom Queen which I haven’t seen in years. Today and tomorrow I’m going to file the remaining documents from CBE religious school, mussar, First Sundays. Then, I’m going to take each book that is piled up near my chairs, give the top ten priority for reading, and shelve the rest.
In order to create the revised Superior Wolf I’m going to read books featuring werewolves, about wolves and the middle ages, about wolves. I want this draft to be more like The Historian or Jonathan Strange and Mr. Norrel in its scope, perhaps with a bit of Moby Dick. I had this ambition for Superior Wolf to begin with, but let the task of finishing get in the way. This time, more patience, please.
Today is Kate’s appointment with Dr. Gupta. The lung diagnosis and the fitness for surgery assessment. A big deal, in other words. Later in the day is her coronation, four permanent crowns. Queen Kate.
Tomorrow the whole rising PSA matter gets lit up and scanned by the hospital’s p.e.t. machinery. Takes about 30 minutes, slowly moving from pelvis to head. This moves me from an indicator based concern, PSA, to the reality of where the cancer is now, in my body. I’m hopeful there are no metastases, of course, that whatever has returned is confined to the prostate fossa. I’m not ready for my expiration date, but, then, I suppose nobody ever really is. The best result in this case is a localized reemergence treatable with the Cyberknife.
Today I have to eat a high protein, low carb diet. No exercise 24 hours before. No caffeine 12 hours before. No food six hours before. Only water. Kate’s been going through these high stakes test for almost 8 months now. There’s a rule here. If you look, you’ll find something. Whether that something is important or not, well… It will be up to the radiation oncologists to define the significance of the pet scan. That comes on Friday at 2 pm. I feel fine, no symptoms.
Exhausted this weekend. Those six days of thinking, feeling, writing, probing, going down the holy well of the self. All good. But, tiring.
It’s Mother’s Day. Another Hallmark moment, I know. Yet. Mom’s. You don’t get here without one. Except maybe that kid in China. Unless you’re a wonder of high, high tech biology, you came out of a womb. Indian Hills, just down the road from us, has these funny signs. You may have seen them on Facebook. The one today reads, “Mom, thank you for the womb and board.”
I come from a long line of mothers. So do you. This thought always strikes me as strange. Think of how many things had to go right for you to exist. Sure, there’s that whole randomness of the sperm that crosses the finish line, but think historically, think evolutionarily, think all the way back to that first organism that took the lightning bolt or the warmth of the undersea vent. Whenever and however life first appeared. Your existence, and mine, means we exist in an UNBROKEN chain of reproduction from that first wiggler, that first animate entity. One after another after another after another, for billions of years. Maybe 4.1 billion years according to this article. From that beginning until now something protoplasmic has cheated death by producing one of your ancestors. Could be billions of ancestors, maybe even trillions.
To shorten the time frame a bit consider mitochondrial Eve. Who? From wiki: “…the most recent woman from whom all living humans descend in an unbroken line purely through their mothers, and through the mothers of those mothers, back until all lines converge on one woman.” Between 100,000 and 300,000 years ago. How many mothers in her line running up to you? Not sure, but a lot. And each one had to survive all the rigors of the out-of-Africa migration, a turn either toward what is now Europe or what is now Asia, and whatever history your ancestors had once civilization began to direct the movement of human populations.
So, when you say happy Mother’s Day, you might consider saying happy Mothers’ Day. After all, no womb and board, no you.
Go now, the workshop has ended. Paraphrasing the end of the Catholic mass. Appropriate in this case having just come Mother Cabrini’s shrine. The experience of being at Mother Cabrini was familiar in its physical surroundings. In college I would always retreat to Catholic sanctuaries to be still, to reflect. I always found them/find them, soothing.
I have my Intensive Journal beside me as I write this. I left it at the workshop over the last week. It’s filled with thoughts, meditations, exercises. The tabs in the journal, some of them, have esoteric names like Peaks, Depths, and Explorations or Twilight Imagery. Others more ordinary. Daily Log. Dreams. Meditation. The workshop itself both teaches how to use the journal on an ongoing basis and creates a gestalt of life now, as considered as it can be. This latter, for the other three workshops I attended, has been enough for me. Not this time. Not sure what changed, but I’m feeling a need to keep using the journal outside the workshop.
Here are two examples of next steps that have me excited. The first is to do a dialogue with reading. In the dialogue section of the journal, orange tabs, there is a method for developing one to one conversations with people important to you, living or dead, fictional or actual. That seems to makes sense. But the other four tabs in the orange section: Works, Events, Society, and the Body perhaps not so much. It works though. The journal method posits that a dialogue can be had with work you’re doing. I wrote a dialogue with Superior Wolf and in it realized I needed to pull the novel apart and focus one story only on Lycaon. In the Body section I’m in the midst of a dialogue with cancer.
Back to reading. Here’s the method. Each discrete entity under these tabs has a conception, a period of growth, then a waning, perhaps even a death. I’ll write a focusing statement, a short introduction to whatever it is: cancer, my mom, alcoholism, reading. Then, I’ll do steppingstones that move my experience with reading from its conception, through its history in my life, and finally where reading is for me right now. (also in the focusing statement.) When those are done, I re-read them, make a comment about how it felt to write them, anything new that has occurred in the re-reading. At that point I’ll enter a meditative place, a twilight place, that will allow me to engage reading in a dialogue, not from my intellect, but from deeper within what Progoff calls my well. Then I write a conversation, a back and forth between me and reading. I’m eager to see what will come of that. Also, in completing the dialogue with cancer.
My Intensive Journal from 2014
The second example is another dialogue, a dialogue with ancientrails that will both focus on where I want to go with this fourteen year old project and how it and the intensive journal can work together. Again, I’ll write a focusing statement, write steppingstones, re-read and comment, go into the twilight place, and write a dialogue between me and ancientrails as a work.
This week, the follow on week after the workshop is going to see a cleaning up in the loft, a tidying. After that I’ll develop a routine with the intensive journal and ancientrails, do some of the deep work that I left undone in the workshop like the dialogues with reading and ancientrails, but some more work in the dream log, twilight imagery log and in the section labeled testament. Probably others, too.
Mother Cabrini’s confirmation
I’ll need both ancientrails, the intensive journal, and caring bridge to weather the critical medical work that faces both of us next week. Kate’s lung disease. Her four crowns. My axumin scan. My glaucoma check. My visit with the radiation oncologists. This time a week from now we should both have a much clearer understanding of where our respective health challenges will take us.
Down for breakfast, then back up here to get some of that work begun.
In a room off the chapel there were several windows that recounted the life and work of Mother Cabrini. It just occurred to me that those windows are steppingstones in her life. All up there with beautiful stained glass for others to see.
5 or so inches of snow over the night before and yesterday. Looks like winter again here. Solar panels covered. Black Mountain hidden in the clouds. The drive down the hill yesterday took some skill. Slick spots, long runs snow and ice covered while going down. Wouldn’t want to have to do that everyday for work. On occasion it’s interesting, different. Our workshop leader, Joanne, lives in Fresno where it gets hot, and in Hawai’i, where it never gets cold. This weather is not to her liking.
This is the last day of the workshop. Now considering how to continue this work on my own. Each other time, three before this one, I’ve come back and not continued the journal. This time it feels like I finally understand the method enough to do it unguided, or at least with the help of Progoff’s main book, At a Journal Workshop. The week long retreats have been sufficient for me to gain new insights, position myself in my life at the moment, and chart out a path forward. That’s why I’ve come to back to this experience.
One thing I’ve not touched on yet in this new journal is reading. I want to read more, more methodically. This desire comes over me from time to time, right now it’s coming in strength. I read a lot anyhow, you know that, but I want to take specific time for more difficult reading. Gotta figure out how to work that in.
There is, too, some overlap between ancientrails and the intensive journal. Sometimes they’re covering the same or similar ground. Will have to work out the relationship between them.
It’s a bit strange to be at May 10 and have the temperature at 24, snow covering the driveway, the roofs, the walkways. In Minnesota the safe time for planting was typically May 15. Don’t think it would work here, at least not every year. We warm back up next week. For now, though. Winter wonderland. Like, I wonder why it’s still winter?
Next week will test the equanimity. Monday am. Kate’s appointment with Gupta. Lung disease diagnosis and fitness for j-tube surgery. Later in the day, her new crowns. Tuesday, axumin scan to determine the extent and location of my cancer. Wednesday, a visit with my ophthalmologist. Retinal photography. Thursday, mussar. Friday, all-season tires and dye into the air conditioning system. A visit to Anova Cancer care for a treatment plan. A jump shift from this quiet week.
One important thing the journal workshop has underlined for me is that I’m not ready to die. I have family I want to care for, see grow up, grow older. Friends I want to know better. I have books to write. Places to visit. Deep work still ahead of me. This is not new, of course, and the journal workshop hasn’t made me aware of it, no. But, it has put me in touch with the gestalt of these things and my desire to keep at them all. The feeling level.
Death will come, but as I heard someone else say, let it be tomorrow.
Read yesterday in the group. Iam asked me afterwards if I was a professional writer. Well, I write novels. But, I’ve not sold any so I don’t know if I’m a professional. Drina, who works for a website connected with the founders of Findhorn, said I was a “bright light.” Not sure what that meant, but it was a compliment. Nice to get feedback.
The intensive journal is a plow for the psyche. It turns over the soil, reaching well below the surface, often down into what Progoff called our well. Up pops things hidden, things repressed and suppressed. I worked yesterday with my one year at Wabash. I’ve always been proud of going to Wabash, ashamed of going to Ball State. Yes, even now 50 years later, still ashamed. Enough of that. Shame is not a big part of my inner world, but in this case it’s stuck around.
What I realized yesterday was that I went to Wabash because I believed in a liberal arts education, in studying what was important to me, not what was useful for a career. Its brick buildings, main quad, great library, and 150 year old traditions gave that sort of education a physical manifestation. It was liberal arts. When I transferred to Ball State, primarily a teacher’s college that got big and became a university, I kept up with the liberal arts. I continued my philosophy major from Wabash, picked up an Anthropology major and almost enough credits for a minor in African Studies. I got my liberal arts education. And am still getting it, yet today.
We wrote spiritual steppingstones, what experiences in our life have led us to our current spirituality. Those of you who know me know that it’s been a long journey. An ongoing one, too. I would characterize my current spirituality as a tablespoon Taoist, two tablespoons existentialist, a teaspoon Christian, a teaspoon and a half Reconstructionist Jew, and a half cup of paganism (of the earth, the sun, the starting of the universe, aware of it and finding it enough). Mix together and bake until dead. Then, we’ll see.
We also wrote about ultimate concerns, those things which excite us, motivate us, about which we have passion. I had several: the Great Work, Economic Justice, Writing, Painting, Reimagining Faith, Horticulture. Each of these continue in my life, some more prominently than others, but they are the core. Economic justice work proceeded them all. Writing came next. Then, horticulture at Andover. The Great Work. Reimagining Faith. And, most recently oil painting.
The third day of creation
We’ll work with these today and tomorrow in this last of the three segments, Life Integration. My experience with these workshops is that it’s often days, weeks later that the fruits of the work begin to manifest. I already know I’m going to revise Superior Wolf, separating out the two story lines I merged in it and giving them their own books. I’m going to focus as much as I need to on getting well, on the scan results and potential treatment options. And, obviously, continue taking care of Kate as long as she needs it. Beyond those things, tbd.
It’s been more exhausting than I imagined it would be, commuting. I’m tired, but glad I’m doing this, weariness a small cost.