Category Archives: Family

Spinning out

Beltane                                                                     Rushing Waters Moon

High Holidays at CBE, before the bleed
High Holidays at CBE, before the bleed

22 degrees. A thin layer of snow on the solar panels, Black Mountain’s lodgepoles topped in a floury white and the sky that Colorado western blue. Bright sun. Why we love the mountains.

Still spinning out, not working much, floating in caregiver world, distracted. It’s ok. I’m waiting intentionally now, Progoff workshop starts Sunday and I’ll go deep into this current version of me, self-guided, self-analysis, Jungian style. The week after it finishes I have my pet scan, then the meeting with the oncologist. Into the unknown, first my psyche, then my body. All in two weeks.

The Progoff method is a pet scan for the psyche, letting me see the things within that have been hidden by busyness, anxiety, stress, competing demands, looking away. Once I’ve seen them, like the pet scan’s images of my cancer, I can diagnose my situation and make a plan. That’s diagnose in its etymological sense: from Greek diagnōsis, from diagignōskein to distinguish, from dia- + gignōskein to know. Merriam-Webster

My suspicion is that I’ve entered a different moment in my life, one that began with two dramatic changes, the first being the move to Colorado. It took about a year to process. All the financial squirming of two houses, moving and pitching stuff, lots of stuff, removing ourselves from Minnesota and moving onto Shadow Mountain. The second change. Prostate cancer. In which I went from a normally healthy aging man to a cancer patient. The sudden push back into the space of a cancer patient, after thinking I’d put it in the past, been cured, has jarred me in ways I’ve barely begun to realize.

20180909_183444
September 9th, easing the SMA induced nausea and cramping

Kate’s slowly, but now surely, rebounding from her long ordeal. She’s able to take on the dog’s second feeding, a modest, but real return to pre-bleed life. Our visit to Dr. Gidday, a post the most recent hospitalization appointment, gave her situation much more clarity. Dr. Gidday agreed that if her hemoglobin numbers don’t stay up, she has labs drawn weekly for the tpn feedings, then she’ll go to iron infusions. That will resolve, or at least attenuate, her anemia. Continued weight gain will happen through the j-tube placement. (remember the j-tube?).

The final piece of the puzzle, her lung disease, awaits either a lung biopsy, which she does not want, or a close reading of the high-resolution CT scan she had on April 2nd. With a diagnosis and the resulting treatment for the interstitial lung disease all the presenting problems of the past year plus should be addressed. A long, long time coming. Just how far back toward her old life she can expect to come is unknown, but if she can get back to sewing, driving, going to CBE and to Bailey Patchworkers and the Needleworkers group I’ll count her better.

Then, maybe I can get back to more abstruse obfuscations here rather than this medico-journalese I’ve had to adopt over the past several months. The tincture of time, as Kate would say.

Beltane, 2019

Beltane                                                                        Rushing Waters Moon

great wheel beltane_2017As the growing season begins, as the Green Man and the Goddess in her Maiden form come together to pass fertility into the soil, we have snow on our solar panels. The streams though have been rushing, carrying water down the mountain. The lodgepoles are greener. Catkins are on the dogwood and willows. Leaflets on the aspen.

Beltane marks a turning point from the fallow time. Finally the crops could go into the fields, food for another year. Beltane was a time of celebration in the ancient Celtic world. It began with a week long market where goods could be exchanged, hand-fasting marriages (a year in length) begun, and night time love making in the fields to assist the Greenman and the Maid in their joy. Work contracts for the growing season were made as well.

As the fallow time fades, you might consider what you want to plant, to grow. Was there a dream that took shape over the time of darkness and cold? For us mid-latitude folks, anyhow. Was there a project that got started, that needs the energy of sun, the nourishment of rain, and the nutrients in the soil of your life? Perhaps a transition that only got underway, but now has better definition. How can the growing season push it along, make it a better part of your life?

Or, are there things in your life better left behind to compost, to decay? Finished parts of your life. Things that can be set aside, that no longer need your energy? The cycle of life is not only about growth. It’s also about literal recycling, of energy, of resources, of flesh and food and fuel waste. There may be things that promised a good crop, but came up stunted. Or things that simply didn’t flourish in your life. Better to let them go, allow them to become memories, learnings, and not give them what other parts of your life now need.

(Maxwell Creek, dogwood catkins last week)

Here on Shadow Mountain we have the stirrings of a new awakening for Kate. She’s gaining weight, eating more. She’s also started, again, bringing up things that need to get done. Just before I go to sleep. Hmmm. We have a way to defeat her anemia and a plan for continued weight gain. When the lung diagnosis is complete, surely before the growing season ends at Samain, we’ll have a treatment. I want the sun, the rain, and the nutrients of our mutual soil to boost her, give her that push to get not only better, but well. May it be so.

In my situation I want to stop growth. Of those damned cancer cells. Looking forward to the axumin scan and getting treatment recommendations. Then, implementing them.

 

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.

 

 

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.

 

 

 

No Cheffing Required

Spring                                                                         Rushing Waters Moon

Two favorite tools
Two favorite tools

Kate and I discussed ways to relieve my stress. One source of stress for me was the evening meal. Part of me, a very strong part, wants to be a chef every night. Something new, something remarkable. Understand the ingredients, bring out their best, try new techniques. Problem. That requires a lot of forethought. Buy the right ingredients. Have them to hand. Try to replicate things I barely understand. And, it results in duds. Failures. Sometimes. Unnecessary stress.

Kate’s solution? She’ll make a menu plan for a week and I’ll cook it. Oh. I can do that. That relieves me of the need to create and in this instance I’m happy to let it go. Last night I followed her suggestion: spaghetti and sauce, spinach. Straightforward. Tasty. And, no cheffing required. Doesn’t seem like it would be much, but I felt so much better when I saw that menu plan.

No word yet on the Progoff workshop. When I registered, there were only 4 of us and they require 7. Hope it happens. I need the clarity about this time that these workshops always give me. The Colorado years have been wonderful, filled with family as we wanted, saturated with mountains and wild life and blue sky, anchored by new friends and community at CBE. The Colorado years have been awful. Cancer. Sjogren’s. Knee and shoulder replacements. (which have helped us both) Kate’s bleed and the sequelae. Interstitial lung disease. Trips to the E.R. Hospital stays. Vega’s death.

alvarez-adventure-caving-spelunking-1So much here. The grit of my life over the past three and a half years. How has all this changed me? What direction does it suggest? How might I live into it with greater joy, greater passion, greater serenity? I also need a break from the every day. Not just because it’s been stressful as I said below, but because it’s been a long time between breaks. Tom and Mark’s visit was a nice respite, but too short.

The Progoff workshop is five days, morning and afternoon in a retreat center. I’ll be a commuter because of the dogs and Kate’s tpn, plus it’s cheaper. If it doesn’t happen, I’ll have to figure out some other way to get perspective and get a break.

Stressed

Spring                                                                        Rushing Waters Moon

20190205_072936Stressed. That’s me. Boiled over. Had to pick up Kate from Swedish yesterday. Drove in, 45 minutes, ready to leave. Do you have the oxygen? That’s Kate’s portable O2. No. Well, we can’t let her out of her legally without oxygen. She won’t die on the way home. Legal. Go find an O2 canister. OK. Over to Safeway, walking. No. Driving, after waiting several minutes for the valet to find our car. King Sooper. No. Hot. Fine. Going back to Conifer. Drove home, 45 minutes. Picked up O2. Talking myself down from being really angry. My fault. I forgot it. Why? I need a break. A respite. Too long at this now. 7 months. Two of those months sick myself. Now my psa kerfuffle. I’m distracted, feeling more responsibility than I can manage. Nobody’s fault. Life in our third phase lane right now.

The background noise from my psa has created a lot of static on my inner radio. Sometimes hard to hear myself think. Sometimes anxious. Sometimes concerned. Sometimes distracted by domestic matters. In between maybe and for sure right now. Tough place to live. Wish my years of this and that for inner peace was up to handling this, but right now they aren’t.

Big, wet system moving in for Easter. Good news for the fire season. The timing is a little difficult since I’m taking Ruth, Jon, and Gabe to a Rockies game on Sunday and it will be cool and wet. If the game happens. Gabe turns 11 on Monday.

Back to regular workouts. That’s helpful for the stress. My O2 sat % has improved markedly. My body responds well to exercise, gains strength fairly quickly. That’s good news at 72.