Day 2

Beltane and the Recovery Moon

Left early for Lone Tree, around 8 am. Had to find my Lupron. Met Shelley, the four-month transplant from Georgia. She’s a nurse practitioner who came here from a 45-doctor group. I’ll be your prostate cancer guru.

We talked. Nobody likes these side effects, Shelley said. She especially underlined hot flashes. Black Cohosh was her top recommendation. A plant based product you pick up in the herbal supplement segment of a drugstore or grocery store. Some have mild hot flashes, some not so mild, some extreme. We have a medicine we can give you if they get really bad. Didn’t find that reassuring.

She also told me to get a calcium-vitamin d3 combo. Lupron makes your bones soft, Shelley said in her distinct Southern drawl. If you fall, it’s easier to cause a break. She also gave me a copy of the Man Plan. Geez. It’s an exercise program for those getting dosed by Lupron.

I have to go back to see Shelley in September. Apparently Lupron alone can suppress the PSA all the way down to zero. That’s why you put up with the side effects. It doesn’t cure cancer, but it can slow it down. I don’t understand why blocking the cancer’s main energy source doesn’t cure it. A question I’ll have to ask.

So. Put a negative sign in front of each of these.

She gave me two pamphlets, a folder with helpful hints, and, a shot of Lupron in the left hip. Didn’t hurt much though it can. They asked me about it later at Anova. Had a couple of hours until my radiation, so I hit breakfast spots near me on my phone. Found the Three Griddles a couple of miles away.

It was, synchronistically, a Southern breakfast joint. Shelley would like it. I had corned pork on cheese grits with two eggs over easy. No coffee though. Two glasses of water. While enjoying this taste of Savannah, I read about Lupron.

Later at Anova my second session got delayed by an emergency for some guy who looked gray, sick, unhappy. Then it got further delayed by gas. I’ve been following the recommendations. I want to be a good patient, help them align the Cancer Predator, so I felt a little ashamed.

Baroque music this time. A poor choice, it turned out. The piece that played longest was downright funereal. Not the mood I was looking for while a red laser beam bisected my torso and the Cyber Knife did its robot dance around me.

Not this

Afterward I got a note from Dr. Gilroy to get Beano and Miralax. I drove through Deer Creek Canyon. Stopped at King Sooper. Bought the Black Cohosh, the calcium plus vitamin d3, Beano, and a big bottle of Miralax. Fun times.

Here’s the takeaway on this, the third day of treatment. The Lupron is racing around right now suppressing the manly hormone. The radiation has begun its job of killing cancer cells. I don’t know what the side effects of either of these are going to be.

Is the loggy feeling I have this morning normal or the Lupron? Will the hot flashes start? What about that achy knee? A strange sensation, waiting, not for Godot, but for the first sign of a foreign agent’s impact on my body.

Told Kate last night that I’m used to taking pyschoactive drugs. There’s a period between when you take them and when they begin to alter your mind. But, I said, in that instance I’m expecting something pleasurable, significant, interesting. In this one the primary purpose, killing cancer cells and suppressing testosterone, is silent, while the knock on effects of the treatment is neither pleasant or significant or interesting.

Atomic Love

Beltane and the Recovery Moon

Next week Monday is my first radiation treatment. On Tuesday the first Lupron injection. The radiation continues every weekday until August 6th, which is both the Hiroshima anniversary and Raeone’s birthday. (Raeone is my ex) Not sure what to make of that. Also, Sunday is Father’s Day. I told Kate I wanted a Geiger counter. Hope she knows that was a joke.

Gonna try to have a little fun with this. Don’t want things grim, mordant. I found a gift shop in Los Alamos and bought a couple of t-shirts. Only found an image I could reproduce for one. I intend to wear both of them, off and on, for my treatments. As soon as they get here.

Been reading a book about Androgen Deprivation Therapy. Helpful. It may not be as bad as it sounds, at least for me. The longest I’ll be on Lupron is two years, probably less. The intense side effects seem to emerge over longer periods of time. Hope so.

October 9th, 2018

In a twist not unlike prostate cancer treatment the day after Father’s Day and ending on the Hiroshima anniversary Kate continues to improve markedly as my journey heads into a difficult period. Her affect is almost bubbly. Sort of. Not sure Norwegians do bubbly, but she’s feeling good.

Her weight is at 99.4! Wow. 76 was the nadir back in February, I think. The j-tube feedings, with some minor exceptions, go well and she’s able to eat more, too. We had shrimp scampi, rice, and Brussels sprouts last night and she ate a full plate.

Showing off her new crowns on May 13, 2019

Our relationship has had the sort of strains that you might infer from a long, long bout of medically related bad news. Eight and a half months now since her bleed and she was not well before then. But open communication kept us out of any deep potholes.

Our partnership, this marriage that got started in the seats of the Ordway Theatre, St. Paul Chamber Orchestra concerts, is stronger than ever. I wrote much earlier that adversity unveils gratitude. So many people show so much caring. Well, I would add to that today that adversity deepens love.

Getting that inner glow

Beltane and the Recovery Moon

On the way over for my planning ct I thought about cancer from a Great Wheel perspective. Winter is coming for us all. We know that and the Great Wheel reminds us that the cycle is the same for all humans. On NPR long ago I heard a doctor say, “Everyone forgets that the death rate for each generation is 100%.” Oh. Right.

Cancer is one of the many guarantors of our personal winter. A friend of mine decided to see cancer not as an aggressor, but as a visitor, a guest in her body. All right, if that’s the way you see it.

I look at it differently. I do not see cancer as a visitor or a guest, certainly not as a friend. I don’t see it as an enemy either. Rather, thinking again in a Great Wheel way, I view cancer as a weed. One definition of a weed is a plant out of place. Not sure if cancer has a place in the same that way a dandelion or a Canadian thistle does, but the idea is very similar.

2013, Andover

Cancer, like a weed, wants to thrive, needs to thrive, at the expense of the garden in which it grows, my body. It’s not evil; it has no intention beyond survival, but its survival and mine are incompatible. So I want to get down on my hands and knees, take out my favorite Japanese gardening knife and cut the little bastard out.

Since I don’t have, like Archimedes wanted, a place to stand to do this task, I’ve chosen the folks at Anova Cancer Care and their Japanese gardening knife equivalent, the Cyber Knife. Just like in a garden, it’s important to remove the weed and not damage the tomato plant or the carrot or the bean plant growing next to it. Care must be taken.

Today the inner landscapers of Anova looked at my pelvic area under a ct. Their goal was to establish firmly the boundaries of my garden, the weedless part of my body. They do this by locating my pelvic bones, my bladder, my rectum, then drawing a cyber-volume of space in the prostate fossa. That space comes up to the edge of the rectum, “kisses the bladder” as Dr. Gilroy said, and has wide enough margins to include as much of that volume as possible without doing damage.

2013, the healthy garden, Andover

Inside that volume is the weed. The cancer. Each day, five days a week, from June 17th to August 6th (no glowing on the 4th and 5th of July, God bless America) the cyber knife will beam 200 cGys of radiation into that small plot, a now empty and weedy bed. Over the 35 treatments I’ll get a full 7000 cGys of radiation, hopefully enough to weed this troublesome patch of my garden.

On Tuesday, June 18th, I go to Anova for my first Lupron shot. This is the second gardening tool. It focuses on what feeds the weed, testosterone. And removes it. It’s a blunt instrument though, unlike the cyber knife. It goes into the whole body and shuts down the testicles and the adrenal glands as far as testosterone production goes. It is, in effect, chemical castration. Oh, goody.

I’ve said, not in jest, that I knew I was a gardener when I began to side with Farmer McGregor in the Tale of Peter Rabbit. Now I’m on the side of brother radiation and sister Lupron. Weed out those wee bastards. Just go for it.

What Lupron will achieve for me

Here is a list of the common side effects from Lupron. Other than these it makes you feel great.

  • redness/burning/stinging/pain/bruising at the injection site,
  • hot flashes (flushing),
  • increased sweating,
  • night sweats,
  • tiredness,
  • headache,
  • upset stomach,
  • nausea,
  • diarrhea,
  • constipation,
  • stomach pain,
  • breast swelling or tenderness,
  • acne,
  • joint/muscle aches or pain,
  • trouble sleeping (insomnia),
  • reduced sexual interest,
  • vaginal discomfort/dryness/itching/discharge,
  • vaginal bleeding,
  • swelling of the ankles/feet,
  • increased urination at night,
  • dizziness,
  • breakthrough bleeding in a female child during the first 2 months of leuprolide treatment,
  • weakness,
  • chills,
  • clammy skin,
  • skin redness,
  • itching or scaling,
  • testicle pain,
  • impotence,
  • depression,
  • increased growth of facial hair, or
  • memory problems.

Uncertainties

Beltane and the Recovery Moon

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.

Radiation and Lupron

Beltane and the Recovery Moon

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.

Maybe this summer…

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.

Important NYT Article

Beltane                                                                                        Rushing Waters Moon

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

How do we know?

Spring                                                                                 Rushing Waters Moon

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.

Sigh

Spring                                                                     Rushing Waters Moon

By Textefuermedizin - Own work, CC BY-SA 4.0, Cyber knife

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

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.

 

No to impeachment

Spring                                                                             Rushing Waters Moon

abyssJupiter 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.