Important note. Whether or not I get a cure from this combination of radiation and hormone therapy, together they will slow down the cancer. That means I’ll live longer than I would with no treatment. If a cure doesn’t happen, I may live into another period of advances in treatment.
Still absorbing. I’ve passed the shock of omg I’ve got cancer again! I’ve passed through struggles over imaging. Now, I have data. Two negative imaging studies and a PSA of high velocity, 3.01 in the last test. I prefer knowing what’s going on.
I’m in a different location now. A treatment plan in place. (see post below) Within that decision was a secondary but important choice. To go after the cancer aggressively. The addition of the lupron reflects that choice.
Sometime next week I’ll get calls from a nurse practitioner who administers and manages the lupron injections. She’ll give me more information about what to expect, what to do. In my instance I’ll get injections every three months for up to two years.
Also next week I’ll get a call from the radiation therapy folks at Littleton Adventist. We’ll set up a schedule for my 35 sessions. They call this fractionation. My prescription is 70 Gy’s (a measure of radiation) spread out over 35 10-minute doses, fractions.
When you get into cancer treatment, the brutality of it, a therapeutic necessity for much of what’s on offer, presents its own set of problems. What doesn’t kill you may cure you, but not without a price. How high a price is different for each individual and unknown at this point for me as a result.
I’m stage III
That does make the upcoming weeks and months more fraught. In addition to the question of how therapeutic the radiation and the Lupron are there is question of how severe their side effects will be. There’s a deep irony in this reality. What’s curing is hurting.
Am I concerned about all this? Yes. It gives the time ahead two different sorts of uncertainty. Wish it were as clean as my initial decision to get my prostate out of my body. That was straightforward. Surgery. Recovery. Done.
Not these treatments. Some side effects of the radiation may not manifest for years. Side effects of the Lupron will be more immediate.
So. Cancer treatment plan. After negative findings for bone lesions and metastases in the thorax-most excellent news-we’re left with the rising PSA as evidence of a cancer return. Since my PSA jumped from 1.3 to 3.01 in two months, this is a more aggressive bugger, but likely confined still to the prosate fossa (bed) where my prostate isn’t.
In my situation Gilroy has recommended 70 Gy’s of radiation over 35 sessions, 5 days a week for 7 weeks. This is a usual plan. He also recommended, due to the PSA jump, the addition of Lupron, a testosterone suppressing drug. Both can have significant side effects, but I’ll deal with those if and as they come.
I chose Littleton hospital as the site for my radiation because it’s a bit easier to access than Gilroy’s shop. Kate has had several imaging studies there and my bone scan and ct were there. I’ve been impressed with their professionalism and kindness.
Gonna get some books on cd. 35 round trips will get me through at least one or two.
No one knows what the future holds. Except for that one certainty. All this is an attempt to push the date of that certainty further away than doing nothing. I’m hopeful, cautiously optimistic.
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.
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
Kate was in the dentist’s chair for 3 hours. Four crown preps. All that drilling. Exhausting. She has temporaries on now. May 13 she gets the actual crowns. Much shorter visit.
Snow much less than predicted. Maybe 3 inches rather than a foot. Weather5280 reeled back their forecast, but we still got less than their numbers.
OK. New pastime. Looking up data about prostate cancer reemergence treatments. Ugh. So much information, so little of it digestible by this non-medical, non-science person. Imaging studies like the axumin scan have competitors. The data comparing those competitors is available, but mostly in journal articles. I can only read them for so long before my attention rate drops.
Another issue that arises is availability of certain imaging modalities. A promising new isotope based on gallium is not yet approved by the FDA. Only two , a choline based isotope which the Mayo Clinic uses, and the amino acid based axumin, have passed FDA trials. Even then, the trials vary in their consistency and in the type of information gathered. The gold standard of evaluation in imaging studies is histologic examination of their findings. That is, the sites identified by the imaging have biopsies and the pathologist determines if the cells are cancerous or not. Difficult to pursue in any numbers.
Once the imaging is done, which can produce 3-D maps of cancerous lesions, but with real caveats, especially the lower the presenting PSA rise, like mine, treatment plans are next. After a radical prostatectomy there are two treatments: hormone therapy (think chemical castration) and radiation. A huge issue in choosing treatments, especially newer ones like Cyberknife is the slow growth of prostate cancer. Statistical studies must be conducted over 10-15 year periods. If your new treatment is less old than that, the likelihood of good studies following actual patients are difficult to impossible to find.
So in both cases there are problems. This isn’t big news to those in medicine. Docs have to work with incomplete and unverifiable data all the time. That’s a major part of what makes practicing medicine such a high wire act and something I’ve come to admire the more I’ve learned. Even so, as a patient, I prefer certain knowledge and definitive options. Just. Not. Possible.
One more issue. Where to get treated. Right now my urologist has referred me to Anova Cancer Care. Anova and Urology Associates (my urologist’s group) are in the same organization. The more I think about it, the more I want a second opinion. Not because I distrust anybody, but because I want the chance to explore options other than the Cyberknife.
Although. Cyberknife does match up well with what I understand about my reemergence. The confounding factor with is the necessarily imprecise nature of the petscan. Cyberknife can kill lesions and tumors it knows are there. But, not ones that the petscan can’t find. There’s more, but I’m tired of thinking about it for now. Gonna go have breakfast.
By Textefuermedizin – Own work, CC BY-SA 4.0, Cyber knife (looks sort of ominous, doesn’t it?)
Cancer seems to move the wheels of medicine a bit faster than other things. My axumin scan will happen on May 14th. A radioactive molecule of an amino acid, leucine, cancer cells take up axumin “avidly” according to Blue Earth Diagnostics. PET scans can observe this activity through gamma ray emissions. According to one website, each dose of axumin costs between $3,000 and $4,000. My cost will be much less, probably around $200.
On May 17th I meet with the radiation oncologists at Anova Cancer Care. Dr. Gilroy will review the axumin scan and use it to recommend a treatment plan. Given the velocity of these matters I imagine the treatment itself will happen soon after.
How this effects Kate and me is uncertain right now. She still has a diagnosis of her lung disease ahead of her, which might entail a lung biopsy, as well as the surgery to place the j-tube. These may happen concurrently. If she’s recovering from surgery and I’m receiving radiation? Not sure how that will be.
Geez. Downbeat. I know. Wish my reality were different. Oh jinn of the lamp where are you? Even so, it’s life. Kate asked me if I was thinking, why me? I said no, never. Why? Because I’m human and we’re frail creatures, our bodies a compromise between life and entropy. Entropy always, always wins.
Korea Hydro and Nuclear Power has started up its new Shin Kori 4 reactor
The technology involved in all this fascinates me. My buddy, nuclear engineer William Schmidt, studied the underlying physics of it all, utilizing nuclear power to create electricity. Now it will find those little bastards that want to advance the entropic time schedule for my body. When my prostate was cancerous, I wanted it out. In this situation there is no thing to cut out, no organ to remove. It’s similar, I think, to a forest where small fires have been ignited by lightning. None of the small fires, in themselves, will destroy the forest, but they have the potential to kindle whole forest consuming wildfires.
I looked at myself in the mirror yesterday. The same. The seven small scars from the DaVinci robot in a jagged curve, hardly visible. Yet, somewhere inside something nasty is happening. My former internist, Charlie Peterson, said we’re all black boxes to a certain extent. Right now, hanging between my psa numbers and the axumin scan, I’m in a limbo where all I know for sure is that there is some cancer, some where in that torso.
Not depressed, but melancholy. A heaviness settles in at some points, some staring. Numb, like my whole body rests on my crazy bone.
Jupiter 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.
Swimming in denial. That’s me. I sent an apology e-mail to Dr. Eigner saying I had misstated my PSA. I wrote it to him as 1.2, but it was really .12, I said. Just got a call from Anna Willis, his PA. Nope. I had it right. It was 1.2. Guess I wished it to be .12 so I decided it was. Nope. The second PSA I had was, in fact, 1.3. Well.
Numb. In shock. Doing what I do to sort things out, write.
I’ll be getting an axumin scan, a relatively new pet scan procedure that can identify active cancer cells and locate them. This not only helps target therapy, a very good thing, but can also say whether the cancer has spread (metastasized) or is confined to the prostate fossa, the area where my prostate used to be. After the scan, I’ll visit the cancer care folks at Anova. They’ll discuss what treatments, probably radiation, might work.
I have a sort of buzzing in my head, a feeling of my body as more of a barrier to the world, heavy. Staring, sort of off into the distance. As I’m writing, I stop. Then, realize I’m stopped. Go again.
Black Mountain is gone, disappeared in the fog, or the cloud surrounding us right now. Appropriate. What’s going on in my body right now is covered in the fog of unknowing. I’ll have to wait, as I will for Black Mountain, to see what can be seen.
Sighing. Distracted. This will pass, this feeling. Then reality will settle in, take another bit of time to figure out, to feel into this changed circumstance.
And, of course, the continuing weirdness of having a terminal condition (if left untreated) with no symptoms. I feel fine. Good. Healthy. Except…
Good thing Kate got good news from the scale this morning. 94! Some of it no doubt due to the prednisone burst she’s on right now, water retention, but not four pounds. She’s gaining weight, feeling more optimistic. Thank god. She said, “After your radiation or whatever treatment, we’re going to board the dogs and go on a cruise.” An excellent idea.
Had to go at this head on, today, while it’s fresh. When I got to my appointment with Anna Willis, Dr. Eigner’s P.A., the first person in the room was Eigner himself. Grayer and thinner, he smiled, shook my hand. When I said it was good to see him, he said, “It’s good to see you, too, but I’m not happy about the reason.” When I told him my anxiety made me move the decimal place on my PSA, his relief was obvious, “Thank god.” Anna came in about then.
They both remembered me. Anna remembered my glasses and our visits. Eigner remembered me partly because I’d sent him a couple of emails over the years thanking him, telling him about my life. It was one of the warmest visits I’ve had in a doctor’s office and that felt good.
Davinci robotic arm, Sky Ridge (where I had my surgery)
Turns out though. “When you’ve been perfect (a .1 psa which means essentially undetectable) and that changes, it’s scary.” He went on to say that it most likely does mean a recurrence, a relatively rare thing for those who choose prostatectomy, even rarer if the pathology report read, as mine did, clear margins. Clear margins means no cancer was found on the outside of the prostate. The best news.
Dr. Eigner took out a piece of paper and drew a sort of oblong on it. “This is the prostate. They can’t take sections from every part, so they take representative slices. If the cancer is between those slices, it won’t show up on the path report.” Oh, shit.
Since it is three and a half years since my surgery, and since the number for the uptick is relatively small, it means the recurrence is probably local, that is, in the area where the prostate used to be. That’s good news, much better than metastasis.
The plan is to redo my PSA in three months, doing the super sensitive one that can take the numbers 3 or 4 places rather than just two. If it’s still rising, I’ll get a referral right away to the oncologists to discuss radiation. “We’ll just go in there and kill it,” he said. “If you were older, I’d tell you not to do anything. This will take ten years to manifest anyhow, but at 72 you’ve still got a lot of life ahead of you.” That’s my opinion, too.
the Prostate Specific Antigen
Radiation has some potential downsides, so I hope we don’t have to go that route. But, as I said to Kate, I’ve always chosen treatments that offer the best chance to remain active, and alive. I chose repair for my torn Achilles even though it means two months of no walking and crutches for a good while after. I chose knee replacement over other treatment options because I wanted to continue exercising. I chose a radical prostatectomy because that gave me the best shot at a cure. Likewise here, if radiation is the option that gives me the best chance to survive and thrive, I’ll choose it. No doubt.
All that’s the rational side, and that’s pretty damned important because these are high risk, high reward decisions. But they’re not all of it.
On the way back from Eigner’s I drove through Deer Creek Canyon. When my biopsy confirmed my prostate cancer in 2015, I drove Deer Creek Canyon, too. Going through there I felt the rock, rock so old that our human scale word ancient is quaint. This rock rose millions of years ago and it will slowly soften, the rough edges frozen and thawed, rained on, plant roots will crack them, and Deer Creek will carry the pebbles and sand to the Platte River on its way to the Gulf. Not only will I be dead long, long before then, it may be that the human race will have ended itself well before then, too. This comforts me.
Laramide Orogeny, 70 million years ago, begun. 35 million years ago, ended. Built the Rockies
William Cullen Bryant’s “Thanatopsis” came to mind. See the opening stanza below.* He goes on to make the point that the earth itself is a great tomb, holding all those who once lived. Again, this comforts me. Death has not chosen me for a special fate. No, death itself is a universal for all who live. It seems harsh and cruel, yet it is, rather, the opposite. Death ends suffering. Allows the world to carry many creatures, but not all at once.
Here there were Utes and Apaches, Comanches, too. And even they were not the first. Older humans preceded even them. And before all came the Rockies, then the trees, the lodgepole pines and the ponderosa and the bristle cone, the aspen. Mountain lions, deer, elk, rabbits, raccoons, pikas, prairie dogs, bison, moose, wolves, fox, martens, fishers, beaver. All here before humans, most will be here after we are gone. I can look at the lodgepoles in my front yard and know that their direct ancestors flourished here thousands of years ago and will do so after I’m dead.
All this brackets whatever troubles I may experience, even cancer. And cancer may be that friend that carries me off to the mighty sepulchre. Or, it might be something else. Whatever is my death-friend will not be an enemy, but the specific cause of my life ending. And that is, for all of us, in spite of our fears, a good thing.
Kindred Spirits by Asher Durand William Cullen Bryant and Thomas Cole
* “To him who in the love of Nature holds
Communion with her visible forms, she speaks
A various language; for his gayer hours
She has a voice of gladness, and a smile
And eloquence of beauty, and she glides
Into his darker musings, with a mild
And healing sympathy, that steals away
Their sharpness, ere he is aware. When thoughts
Of the last bitter hour come like a blight
Over thy spirit, and sad images
Of the stern agony, and shroud, and pall,
And breathless darkness, and the narrow house,
Make thee to shudder, and grow sick at heart;—
Go forth, under the open sky, and list
To Nature’s teachings, while from all around—
Earth and her waters, and the depths of air—
Comes a still voice—
Yet a few days, and thee
The all-beholding sun shall see no more
In all his course; nor yet in the cold ground,
Where thy pale form was laid, with many tears…
The oak
Shall send his roots abroad, and pierce thy mould…
first ever picture of a black hole, taken by the Event Horizon telescope. 6.5 billion times larger than our sun. And, btw, this also a picture of the telescope’s namesake.
Jupiter 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.
Swimming in denial. That’s me. I sent an apology e-mail to Dr. Eigner saying I had misstated my PSA. I wrote it to him as 1.2, but it was really .12, I said. Just got a call from Anna Willis, his PA. Nope. I had it right. It was 1.2. Guess I wished it to be .12 so I decided it was. Nope. The second PSA I had was, in fact, 1.3. Well.
I have a sort of buzzing in my head, a feeling of my body as more of a barrier to the world, heavy. Staring, sort of off into the distance. As I’m writing, I stop. Then, realize I’m stopped. Go again.
