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.

Long. Strange.

Spring                                                                      Rushing Waters Moon

whatWe hit month 7 since Kate’s bleed yesterday. (To quote the Grateful Dead.) Procedures and imaging. Trips to the emergency room. Trips to doctors. The gradual shift in roles at home. Things have gotten clearer, some solutions have appeared, but nothing certain right now.

I remember saying to Rabbi Jamie in October, “Three weeks! It’s been three weeks. I know a lot of people have it worse, but three weeks…” Kate had been at Swedish for two weeks and Brookdale for one at that point.

As we enter the eighth month of Kate’s ordeal, I believe we’ve found a useful rhythm, a way to be together as this all winds its way toward whatever conclusion can be had. We know who does what. We’ve made some gains towards healing her illnesses. There’s a community of folks, wide spread, from Saudi Arabia to the western burbs of Minneapolis, to Singapore who care about her, about us both. The dogs, fortunately, have been healthy the whole time. A whole winter has come and gone.

The Celts originally had two seasons. The fallow season that began on October 31st, Samain, and the growing season which begins on Beltane, or May 1st. Here’s to a hope that the growing season, which starts in two days, can release its magic for Kate’s continuing improvement.

Rigel and Kep

Rigel and Kep

Rigel continues her odd habit of eating a bit, then going to the back door, which is mostly glass, and looking outside. She stays there 30 seconds, maybe a minute, turns around, comes back and continues eating. Kep, or Kep the Inhaler as Kate has dubbed him (she just finished a book that had Vlad the Impaler as a key character), finishes first, always. Gertie is pretty fast, too, but not as vacuum like as the Kep. She’s blind in one eye, it has the cloudiness of Odin’s, missing a canine, and has a bum left knee but she wags her tail, runs up the stairs to the loft, and can still catch a treat thrown directly to her. Dogs understand wu wei, perhaps Lao Tze learned it from a dog.

Kate’s coronation begins today. She gets the prep work done for four crowns. Sjogren’s, which dries out the mouth, reduces saliva, the natural mechanism that fights tooth decay. Since 1994, we’ve been on our own well, too, so no fluoride. And guess what? We’ve maxed out our dental insurance. Sigh. Whenever I’ve gone in for a crown, I’ve had an old hymn as an ear worm, “Crown him with many crowns.”

gunSynagogue shootings. Mosque shootings. Church shootings. I’ve not read of any Hindu temple shootings, but if they’ve not happened, it seems inevitable.  A Southern Baptist clergy said, “…no one should be gunned down in worship.” NYT  Well, No one should be gunned down. Not in school. Not at worship. Not in a McDonalds. Not at a mall. Not a college. The gun is a curse on our culture and the NRA is its pimp.

When will we take on the NRA, the terrorist organization responsible for more American deaths than Al Qaeda, ISIS and all terrorist attacks worldwide since 1995? According to the National Consortium for the study of Terrorism and Responses to Terrorism, 3,685 Americans have died from terrorist attacks worldwide between 1995 and 2016, with 2,908 occurring on 9/11. In 2017, 39,773 Americans died in gun violence. NYT. That’s right, 10 times the number of deaths in only one year! No wonder the world shakes its head. We are, in many ways, our own worst enemy.

 

 

 

Yet more

Spring                                                                                Rushing Waters Moon

Kate on the porch on Pontiac Street, 2015

Kate on the porch on Pontiac Street, 2015

Asked Kate yesterday how she feels about my cancer reemergence. “It’s not real to me yet. I’m still dealing with my own stuff.” Yeah. She’s got a lung diagnosis yet to be made and an assessment of her viability for surgery. The current plan, to have a lung biopsy and the j-tube placement at the same time, has stalled. For reasons known to Colorado Pulmonary Intensivists, but not us.

The good news in her situation is that we know she can gain weight. The tpn has proved that. We know her anemia can be countered. The blood and iron infusions proved that. We need to get a plan for continued weight gain, the j-tube most likely, and a plan for the anemia, blood and iron infusions make sense to us. With those two major issues addressed, then the lung diagnosis, whatever it is, will need a plan, too. That can’t be made until we know the etiology of it. Can’t know that without a lung biopsy. So… The ball goes back to Colorado Pulmonary Intensivists.

Georgetown RR, 2015

Georgetown RR, 2015

The next couple of months will be intense. Although. As Tom said yesterday, he knew there was the inner Taoist in me that was calm. Yes. And the dominant part of me, I said. Doesn’t mean there aren’t ripples of anxiety, of stress, of fear. The interleaving of our medical issues has actually been good for me since I can focus, as I have been, on Kate’s more immediate needs while I wait for May 14th, the axumin scan, and May 17th when I meet with Dr. Gilroy at Anova Cancer Care. After the 17th the trajectory of my illness will be more clear, a prognosis probably in hand, and a plan for what to do.

I don’t think I’ve remarked on it here, but treatment after a radical prostatectomy, or for that matter after any cancer treatment that fails, has a weird name. It’s called salvage therapy. Sounds like the law of the sea rather than medicine. It also has an unfortunate connotation to me. Let’s see if we can do anything to fix this mess. Not confidence inspiring.

It’s a beautiful day in the neighborhood. With 8-12 inches of snow forecast over the next couple of days. Colorado.

 

 

At the Jabbok Ford

Spring                                                                      Rushing Waters Moon

jacobPhone call today from buddy Tom Crane. In referring to the current kerfuffle within my body, those cancer cells, he said I was “wrestling with a dark angel.” That is so.

Yet what it called to mind was one of my favorite biblical passages, one I’ve written about here before and about which there are many wonderful works of art. Jacob at the Jabbok Ford.

Through the night Jacob wrestles with what the text refers to at first as a man. When the man, now revealed as an angel, sees he cannot best Jacob, he says, “Let me go, for dawn is breaking.” Jacob, strong enough to hold an angel fast through an entire night, is not willing to do that. “I will not let you go unless you have blessed me.” It is at this point that the angel, who had to dislocate Jacob’s hip to keep from losing the match, agrees: “Your name shall no longer be called Jacob, but Israel, because you have commanding power with [an angel of] God and with men, and you have prevailed.” Jacob (now Israel) continues to limp the rest of his life. He names the spot Peniel, (I) saw the face of God.

Wrestling with angels is a tricky business. Just ask the Egyptians. That one, the angel of death, sometimes called Azrael, passed over the lamb blood smeared doors of the Hebrew slaves and killed the firstborn of Egypt. What would have happened to Jacob if he’d been beaten by the angel? No blessing, I’m sure.

Wrestling with Azrael, cancer forces this struggle on the psyche in the same way Jacob’s angel blocked his passage across the ford, could be represented as happening at a ford of the river Styx. Lose a match to Azrael and, to mix mythological systems a bit, you can catch a ride with Charon.

As with Jacob’s angel, no contest with Azrael will result in victory, Azrael wins all struggles in the end. But in the interim, as with Jacob’s life after the Jabbok Ford, we can go away changed in heart, identity, and fate.

ruin_stairs_leave_destroyed_broken_dirty_building_factory-921666.jpg!dRecalled as I wrote this that I had a dream:

“I was in a non-descript house or building, bare of furniture. Someone, or something, was in the basement. I could hear gun shots. I hunted for entrances to the basement and found two, one a door and one a grate.

Down there were steel pillars covered in concrete.  Whoever or whatever down there wanted to bring the building down. The blue painted concrete had shattered on many of the pillars exposing steel beams. They still stood strong.

Somebody handed me a rifle. I readied myself, though frightened, to go down and save the building.”

Surely this is Azrael. I woke up before the contest could begin, so I’m going to imagine the rest.

I went down the stairs, grateful for the rifle, thankful for whoever handed it to me. But, could I use it? I’m not a man of peace exactly, but I’m not a man of violence either. Still, desperate times. The basement had a little light, enough to make shadows. Gunfire echoed more loudly as I got to the bottom. Whoever it was, was serious.

The gunfire stopped. “You shouldn’t be down here.” A voice cold and firm. From the depth of the shadows. “Leave now and I won’t destroy you. Not right now.”

OK, I thought, back up the stairs. This is too scary. However, I didn’t move. I lifted my rifle and aimed it toward the voice. When I pulled the trigger, it clicked. A rifle with no ammunition. Well, that settles it. Back up the stairs. Nope. Stayed. Scared, but unwilling to give up.

The gunfire did not resume. The air had faint patterns of blue dust from the pillars that had been shot up. The silence was complete. No voice. No evidence of another.

Fates

Fates

My feet began to move before my mind caught up. Whoa, I thought, feet where are you going? I knew, though. Straight toward the depth of the shadows. I heard what I imagined was a rifle clatter to the ground. Hmm. Even up, I guess.

“Come no further unless you want to meet your end.” Cold, firm. Closer.

My mind said, back up the stairs. My feet kept moving until I lost sight of them in the darkness of the deep shadow. Heart racing, adrenaline swimming through my bloodstream, setting me on fire. We closed.

How long we struggled, I no longer remember. He was strong. Much to my surprise, so was I. We went back and forth, pushing, straining legs and arms, trying to gain an advantage. This was all in the darkness of the shadow. I could not see him and I assumed he could not see me.

Oh. Wait. Not a he. At one point, arms locked together, we touched at the chest. Breasts. A woman! Didn’t change my situation. She was still there to bring down the foundations of my life.

This went on. And on. I grew weary. So did she. Panting, both of us. Our moves more feeble. She touched my left shoulder and my left hip. Pain. Agonizing pain. Giving up not possible, I hung on, endured the pain, chose it.

Isle of the Dead, Arnold Bocklin

Isle of the Dead, Arnold Bocklin

“We must end this,” she said.

“Not until you stop. I need those pillars, I can’t let you wreck them.”

“If not tonight, later. You know that.”

“Of course. Yes. I know. And when it’s time I will not fight you, but come willingly.”

She dropped her hold on me. My shoulder and my hip blazed. The adrenaline was gone. I felt weak. “You must bless me and I will leave.”

Later, back up stairs, the door to the basement closed and locked, I sat at a small wooden table, drinking coffee. I had a new name. Just like Jacob.

Optimism

Spring                                                                          Rushing Waters Moon

Kate at 16

Kate at 16

Took Kate out for errands yesterday. Doesn’t sound like a big deal, but it is. She went into the goldsmiths and got a new battery for her mercury dime-faced watch. I parked, came in and found her looking at wedding rings. Well, replacement wedding rings. After 29 years she has misplaced hers. Vega ate mine with the watch band I used to hold it long ago. It’s out there somewhere in the wilds of Andover. Kate walked into the goldsmiths, walked to the car. We went to Hopsin’s Dry Cleaner, the post office, and the Village Gourmet, looking for a bread box.

When we got back home, she was not ashen, not exhausted. Her stamina has improved. A lot. A testimony to weight gain, blood and iron infusions, and her commitment to ot/pt. Her face is fuller at 94 pounds. We’re both cautiously optimistic. Next up is the lung diagnosis and the j-tube placement. Some day.

I’m off to Bailey this morning for our month’s worth of thc. The Happy Camper. I’m going to take the opportunity to go to the Rustic Station for breakfast. Their sweet cream pancakes are wonderful. Tom and Mark and Paul, I’ll eat them with mindfulness of our trip to Durango.

20180615_101542It’s a blue sky, sun shiny Colorado day. We get a lot of them though in recent months we’ve also had our share of dark and gloomy. I like both. The sunny days lift my spirit; the gloomy ones inspire my creativity.

Got groceries delivered and the house cleaned yesterday. Having groceries picked and delivered relieves a major energy drainer. Well worth the extra 10-20 bucks. Sandy, our house cleaner, got energetic and washed some bedding, my electric blanket included. At first, I thought she had shorted it out like the first one that got washed, but no, it lives!

 

 

 

 

A Difference Maker for My Heart

Spring                                                                              Rushing Waters Moon

20190420_173752Back to mussar yesterday. First time in quite a while. It was a gift, as was the minyan for Debra Copes’ mother’s memorial the night before.

Odd though, in both instances. I find myself an insider and an outsider. There is no question that Beth Evergreen accepts both Kate and me. I’m of the community, not a Gentile pagan interloper. Yet when the prayers are said and the knee bending and bowing begins, I feel like an outsider. I don’t know the words, nor do I fully understand why we’re bending and bowing. I try to follow the person next to me, but I feel awkward and a bit inauthentic. Also, I don’t wear the kippah during services. Again, it doesn’t seem authentic for me since I’m not of the tribe.

When Alan Rubin and I went to lunch on Wednesday, for example, I ordered a reuben, a pannini. When Alan ordered a salad, I said, “Oh, on your diet, eh?” “Well, yes, but also we can’t eat bread during Passover.” Oh? Oops. Passover, it turns out, is 8 days and eating leavened anything during this time is out. Yet they trust me enough to teach in the religious school.

high holy daysBeing away for a while makes me more aware of these moments. Yet Debra wanted me at her mother’s minyan. She did a universal worship service which consists of lighting candles for Hinduism, Zoroastrianism, Christianity, Buddhism, Islam, Judaism, and a general candle for other witnesses to the divine. Rabbi Jamie said, at a meeting a couple of weeks ago, “This ex-Presbyterian understands Reconstruction better than anybody else around this table.” Around the table were key leaders of the synagogue.

Yesterday I offered what was for me a mussar interpretation of a table of virtues set out by Renee Brown, a favorite author of many in the congregation. Yes, to generosity. But, also, yes to retaining sufficient resources for yourself and your family. Yes, to freedom, but also yes to submission, to recognizing those times when serving others is more important. Yes, to accountability, but also yes to breaking the rules, to recognizing that not all instances of being held to account (even by ourselves) are equal or worthy.

20180316_191858The Jewish approach to death, too. Sitting shiva with someone after a death. Having those in mourning stand and be acknowledged during the mourner’s kaddish at every worship service. Celebrating each year the yahrzeit, the year anniversary of a loved ones death. Calling together a minyan as Debra did for honoring her mother. Those who knew it, repeated the mourner’s kaddish from memory. A vital and key part of maintaining community, acknowledging that the dead live on, not gone, just absent.

When I told Alan about my new reality with the axumin scan and oncologists, he said, “You know you’ve got the whole congregation behind you?” He meant it. Wow. Makes me feel like crying. Because I’ve always chosen an outsiders role, I’ve rarely known complete acceptance in a group; but, I feel it at CBE like I felt it in the Woollies. Profound. A difference maker for my heart.

 

 

 

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.

 

 

Sprinting Through

Spring                                                                         Rushing Waters Moon

Slept fine. Had this soothing scene as the evening faded into night.

Learned that the Progoff workshop is on. I need it even more now. The Colorado years have been tough in health and Jon related matters. I need to pull back and look at my life, learn from it, make some decisions about directions. The cancer reemergence makes gaining this sort of perspective critical.

As with most things medical beyond primary care, an axumin scan requires prior approval by insurance. That can take as much as a week. That could put it in the Progoff week. I probably won’t schedule it for that week unless my docs feel this is super urgent. I’m going to need as much psychic balance as I can muster over the next few months. Kate’s still sick, after all. And still needs my care.

Took Kate to her year follow up for her shoulder replacement. A bit of good news. The shoulder looked good in x-ray and she’s got good range of motion. Her left shoulder has begun to show symptoms. Fixing that one is down the list of medical matters needing attention for her.

We’re planning to get back to mussar this week. I need the community at Beth Evergreen and so does Kate.

Lots of diverse things running, no, sprinting through my mind. As you might expect. Is this the beginning of the end? How bad is the reemergence? Has the cancer spread? What kind of treatment will I need? What will it do to me? How will all of this effect my ability to care for Kate? How will Joe, Jon, Ruth, and Gabe take this news? What’s my prognosis? None of these are happy thoughts. Each carries its own frisson of emotion.

So much unknown right now. It’s impossible not to wonder about the future, but I’m making no big leaps. Information gathering. Decision making. That’s now. And I have Kate to help with that. A big advantage.

Making corned beef and cabbage for dinner tonight.

Over the weekend

Spring                                                                        Rushing Waters Moon

Juice, haggadah, seder plate, gefilte fish, Lucas

Juice, haggadah, seder plate, gefilte fish, haroset, Lucas

 

Coors Field

Coors Field

 

Birthday boy and family

Birthday boy and family

 

Swing, batter

Swing, batter