Became Native to This Place

Imbolc                                                                Valentine Moon

we're waiting to transition to a feeding tube placed in the jejunum

we’re waiting to transition to a feeding tube placed in the jejunum

UPS delivers vitamins and bags of nutrients for Kate. On Tuesday we got a box with a styrofoam container, two gel packs to keep things cool, bubble wrap filling the container, about 12x12x12. Two vials of vitamins. Next day, two more boxes, same size, syringes, nutrient bags, batteries (a fresh 9 volt goes into the pump every day), saline flushes, heparin locks, tubing for the pump that connects to Kate’s picc line.

The logistics of this tpn feeding are remarkable. Not only do they have to ship us the right amount of stuff, it has to get here on a timely basis. And, the nutrient bags have a mixture that is tuned according to Kate’s labs, which can change on a weekly basis. Somebody has to coordinate all that and make sure the counts are right, the nutrient’s up to date, and that it gets here so we can use it. But, you can’t send too much at once because the tpn might be stopped, or certain things, like the vitamins and nutrients might spoil.

tpn4It’s no wonder medical costs are high. All of these things are one use only: syringes, nutrients, saline flushes and heparin flushes (each in their own individual packing), batteries, tubing, alcohol wipes, even the packaging for the deliveries. The need for sterility drives most of this. Kate’s picc line ends near her heart in the superior venous cava, which means there is a direct link between the outside, non-sterile world and that vip organ. Even the tiniest mistake in sterile procedure could have disastrous, catastrophic results. No pressure, eh?

I’ve gotten more facile with the various steps required to change out Kate’s nutrient bags. She draws the vitamins out of their vials using syringes. She and Julie, the home health nurse, make that look easy, but my fingers don’t find it so. As Kate said, my dexterity is in my brain, not my fingers. The rest of it, I can do. I could figure that one out, too, but with Kate’s expertise, why?

20181230_064700Grieving now. Looking at things around the house with that critical, ok what do we need to do with this in order to sell the house eye. Driving up the mountain considering how many more times I’ll be able to see Black Mountain on my left as I climb Shadow Mountain to our home near its peak. Not anxious about it, just sad.

Place is very important to me. Andover taught me that. Even though we lived there twenty years I never made my peace with the suburban blandness. No there there, was the way I put it. Oh, yes, our property had a definite sense of place, but it was set in a context that numbed the mind. At least my mind. Here, the opposite is true. I love the mountains, the vistas, the curves in the road. The weather. The ever changing face of Black Mountain.

As the John Muir quote on my e-mails says, “You are not in the mountains, the mountains are in you.” It’s an aesthetic sensibility. Over my years at the MIA I learned how important aesthetics were to me. Always have been. Deep in my soul. Perhaps it’s even the root of my pagan leanings, the aesthetic link I feel between myself and the natural world.

 

A Pearl Pendant

Imbolc                                                                   Valentine Moon

The waning Valentine Moon hung over Black Mountain this morning, Jupiter dangling below like a pearl pendant. The beauty here, the distinct and unique sense of place, the simple knowledge of being in the Rockies makes this a special place, hard to leave. Conversations still underway, no decisions until we talk to the pulmonologist, Kelly Green. Even so, moving seems the most likely outcome.

611333-ancient-roman-wall-with-street-nameboardEvery day I’m getting a bit stronger, stamina improving. Probably back to a new workout in a few days. I’m feeling the need to get moving, but my trainer said to wait another week. As my buddy Mark Odegard pointed out a couple of years ago, our old bodies don’t snap back the way they used to. I went way down with this whole illness and my body will require time to climb back up again.

We saw Edwin Smith, the surgeon, yesterday. He’s methodical, taking care to make sure that this operation will actually benefit Kate and that she’ll come through it well. He talked about a feeding tube placed down her throat. Kate said no thanks. He wanted the tpn. It’s in and working. Now he wants Kate’s visit to a pulmonologist to happen before he’ll schedule surgery. Makes sense since she had the pneumothorax (collapsed lung) and some concerning findings on x-ray about her lungs.

The methodical approach has an element of foot dragging and ass-covering to it, I think, but I believe I overestimated that. I was in the middle of my no good, very bad horrible three weeks the last time we saw Smith and I formed an opinion colored by my own malaise. Now I believe he sees a tricky and mildly questionable (in his opinion) procedure he’s to perform on a 75 year old woman in fragile health. First, do no harm. Even though it drags the process out, I agree.

Due to Kate’s more intensive care needs at this point I’ve bowed out of all my CBE obligations. I’m not reliable since Kate’s situation seems to get more fluid over time. This is true now because of the build up to the feeding tube, then the feeding tube placement, and the aftercare.

Big

Imbolc                                                                    Valentine Moon

20190218_073058Oh, my. Physical yesterday and a visit for Kate to see Lisa, too. We often go for each others appointments, especially with Lisa, our internist. I got a clean bill of health though I have to have labs drawn today. My follow-up chest x-ray was clear. Clear. No pneumonia, no disease process. Just clear. Wasn’t expecting that after the first one, but hey…

Kate’s situation continues to be problematic. From her most recent hospital visit Kate got a referral to a pulmonologist. While treating her for the pneumothorax, collapsed lung, the pulmonologist at Swedish saw signs of what might be interstitial lung disease. Could be another complication of Sjogren’s.

When Desiree wheeled the ekg machine out of the room, my heart’s fine, too, Lisa turned to us. “You’ve got to think about moving.” Oh. My. “I don’t want to. I like where we are. And the last move was awful.” “Health is number one, right?” Right.

As I wrote a few posts back, the thought has occurred to both of us. Kate’s suffering more from the altitude than I am. However. My O2 saturation hovers around 90 here, just barely enough to consider healthy. There’s a case to be made for my being helped by a move to lower ground, too.

January, 2015

January, 2015

Move. The word makes me clench. Spent a lot of last night in bed trying to figure out how to cope with this. Severe cognitive dissonance between my love for our home, for Shadow Mountain, for the Rockies, and my love for Kate and for my own health. In the end, no contest. We gotta move. Hate to say it. Feels like a failure of sorts, though I don’t know why.

Just how low do we need to go? Don’t know. That will be important. Several factors will converge to create a sweet spot for a new place: altitude (low enough for easier breathing for both of us), enough room for the dogs, quiet, and no more than approximately 30 minutes from Evergreen. I’d also like to see a single level and forced air heat. Not to mention that a new place has to fit our budget. Oh, joy, another mortgage process.

When? Not sure. Maybe in the next three months.

I will not pack anything this time around. I’m packed out from the last move. I’ll have to dramatically reduce my library, I’m sure. Maybe it’s time. A lot to consider, a lot to do. Just when we’re both at our tip top physical best, too. But Lisa’s right. Health is number one.

Hail a New Creation

Imbolc                                                                         Valentine Moon

My life flows on in endless song;
above earth’s lamentation,
I catch the sweet, though far-off hymn
that hails a new creation.      “How can I keep from singing?”  Robert Lowry

When I opened this page, Robert Lowry’s hymn came to the surface. I could sing this verse with no pauses for personal editing. The rest of them? Not so much. But, no matter. This one has a powerful, here and now message and it came to me from my unconscious.

third phaseThe woes of the body, our lamentations here on Shadow Mountain, are of the tactile world, the one bound up in life and death; but, they are not of the soul, the spirit, the ohr, the imago dei. No. In my soul (a word I’ve come to use more freely of late, meaning that part of me that bows to the god in you, namaste.) I can hear the sweet, though often very far-off hymn. It hails a new creation coming into existence even now, one shaped by the lamentations, but not determined by them.

That new creation is a new sort of intimacy for Kate and me, one forged not in the upbeat, I did it, achievements of the family and career second phase, but in the existential reality of the third phase. In the third phase the body begins to let go of life, gradually, a bit here, a bit there. At the same time the fruits of a lifetime of meditation, awareness, thought, friendship ripens. The soul begins to unfold, ready.

Rudolf Steiner, the founder of Anthroposophy, said that September 29th, the Saint’s Day of the Archangel Michael, is the springtime of the soul. (odd coincidence. Kate’s bleed was on September 28th) What I’ve always liked about this idea is that it marks soul growth as occurring best in the fallow time. The fallow time, especially after Samain, Summer’s End, on October 31st, is that point when the growing season ends. An analogy to the third phase seems apt to me. The fallow time is a time for going within, going deep, finding nourishment in the eternal parts of ourselves, our soul.

That is what is happening for us. Our souls are flowering in the decay of the body. That flowering of the soul (I see a lotus.) is the new creation, perhaps not as far off as it seems.

Blessed be.

 

Then the heparin lock

Imbolc                                                                         Valentine Moon

tpnTwo saline flushes, then the heparin lock. Clamp the picc line. Half of the thiamine bottle, one each of the white cap and blue cap bottles, all injected into the tpn bag of milky, 950 calorie nutrition. The thiamine is yellow and floods into the bag creating a branched, river like stream. Shake the bag so that the vitamins and other additives mix up. Spike the bag with the plastic spike that connects to the tubing. Clamp the tubing. Connect the cassette that holds the tubing to the pump. It slides in and locks. New battery for the pump. Turn pump on. Wait, go through the pump’s programming. Unclamp the tubing. (lots of alcohol wipes in here. sterile technique required since the picc line ends just above the heart.) The tpn nutrients gradually, a milliliter at a time, snake up to the connector. Saline flush. Wipe. Connect tubing to picc lock. And, voila, breakfast, lunch and dinner.

I do this by myself this morning, with Kate’s assistance of course. The tpn pump, in Kate’s case, runs almost 24 hours, delivering approximately 41 milliliters of nutrition an hour, every hour. The objective here is not so much weight gain as getting her tuned up nutritionally for surgery. The feeding tube placement procedure is not major surgery, but it is surgery and she is frail. Most of the time people learn how to do this for a much longer duration. In our case 10 days. Learning new things everyday.

Still slowly emerging out of the cocoon in which illness places us all. Perhaps I’ll have imaginal cells (a real thing, see butterflies) which will alter my being, transform me into someone new after the last three weeks. I’m ready for some new, even if it’s taking up again the things I was doing before with changed purpose.

It’s 10 degrees here on Shadow Mountain, but, in Colorado fashion, a warmup is on the way. 47 on Tuesday.

And, btw, yes, it has occurred to us that 8,800 feet is not the best position for us with our ailments. Not likely to change soon however with the dogs and my almost pathological aversion to the idea of moving. The move that got us here felt like a last time for that sort of thing. Difficult.

Still Here

Imbolc                                                                             Valentine Moon

A new chapter. Mt. Evans’ Hospice and Home Health Care (personally wish they’d reverse the order of those nouns) has begun to come out. First, nurses to help us understand and adapt to Kate’s picc line and the changing of the tpn pouches every 24 hours. Both Julie and Michele live on Warhawk, very close by. Reassuring. The feeding helps, 950 calories or so over 24 hours, and balanced for her needs as I mentioned before.

Second, Kate had her first p.t. session yesterday and will have o.t. next week. This is important since Kate’s activity level has been minimal for months.

It’s a lot of change in a situation that has already caused lots of change. This is forward progress though. Kate sees Edwin Smith on Tuesday and hopefully the feeding tube placement will get scheduled and done soon after.

We get a grocery delivery today. That will be welcome. Once I feel better we can forego delivery and go to pickup. Still order online. They bring the groceries out to your car and you take them home. Ted plowed our drive this morning. 5 inches or so overnight. Happy about that.

I’m much better, but still mending. Chest x-ray on Thursday. Follow-up. No word on that yet.

 

Radical Change, or Radical Removal Roman Catholicism

Imbolc                                                                   Valentine Moon

Let’s switch off health. I know, I know. You want more picc lines and coughing and fatigue, but I wanna talk about a different sort of illness. The Roman Catholic Church.

Been thinking about Lord Acton, the power corrupts and absolute power corrupts absolutely guy. That’s not quite right. Here’s my version: if you think you have power, it corrupts you; if you think you have absolute power, it will corrupt you absolutely. Ideologues may not always have real political or economic power, but they think they have a power more important than either one, The Truth. Imagine a tyrannical father. A domineering mother. Donald Trump. The Shining Path. The KKK. Proud Boys.

I understand the allure, having veered off in that direction more than once in my life. If you know The Truth, your ends always justify your means. It just follows, doesn’t it? My ends, which are true, guide my method of achieving them. Ipso facto. QED. If there is some wreckage here and there, perhaps collateral damage, well, we’re still headed in the right direction and that’s what counts, right?

Max Weber, the father of sociology, famously defined religion as the rationalization of charisma. You have a dynamic, compelling leader, Jesus, Mohamed, who catalyze a movement. But these leaders die (or, in some cases, are killed) and those who surrounded them take over, vowing to keep the movement alive in the spirit of the fallen one. As you get further and further away from the death of the charismatic leader, bureaucracy begins to take over, making policies, setting rules, organizing everything. If you think about it, you’ve probably since this in action on a smaller scale at a business, a school, in sports.

Enter church councils, church fathers (see?), and, worst of all, theologians. The RCC believes it is the direct lineage of those early followers of Jesus, the followers who vow to keep the movement alive, in Weberian terms. They believe in particular that the bishops of the church are in direct line to the apostle Peter, containing his mystical power to define and shape the lives of Christians. All Christians.

This is a recipe for hubris. But, that’s not all. Celibacy. Celibacy became the mark of those who set aside their lives for service to the Church. Just how that happened isn’t important here, but it did happen and it acquired the theological imprimatur of the Church.

Now put celibacy together with the view that the church, whom the priest divinely represents through the sacrament of ordination, has the right, no, the responsibility to say what is good and what is bad in the lives of parishioners. In each congregation, each gathering of the body of Christ under the Roman Catholic rubric, the priest represents the power of Jesus, mediated through the apostle Peter who ordained bishops who then ordain priests.

I’m not trying to be subtle here. This ideology, for that’s all a theology is, a sanctified ideology, put absolute power over the lives of men, women, and children in the hands of men who agreed to never have sex. (Yes, nuns, but we’re sticking with the theme here.)

Here’s my main point. This has been true since Roman times. In other words, the same toxic combination of celibacy and absolute power has existed in Catholic congregations and monastic groups since the early 100’s a.d. That means, at least to me, that the same abuses of that power, driven in large part by the notion of celibacy, have existed since then. In other words, this moment is not an aberration, not a modern era problem, but a systemic one, an organized system of depravity and secrecy calling itself a Christian church.

I believe this questions the fundaments of the Catholic claims, not only questions, but destroys them. It needs a wholesale change: married priests, women priests, acceptance of lgbtq+ folk. Or, it needs to be torn out root and branch and burned on the bonfire of Apostolic vanity.

 

More Health Stuff.

Imbolc                                                                  Valentine Moon

Gradually getting more stamina. Felt good enough to go in and pick up Kate from Swedish yesterday afternoon.

She’s home now, again. Trying to imagine what this whole ordeal must be like from within her frame of reference. Difficult. So many procedures, hospital and doctor visits. So many different interventions. And the needle sticks. She has rotten veins and it often takes four, five times to put an iv in or draw blood. Sounds medieval.

Home health from Mt. Evans’ Home Health Care comes by today to hook up the tpn. They offered to come last night around 7, but Kate was too weary. A delivery guy from an outfit called Medspeed dropped off two thermo insulated white boxes and an ordinary cardboard one, supplies. We’re entering new territory here with home health care and medical apparatus on site on Shadow Mountain.

Kate has had an important insight. Now that she’s well hydrated through the tpn nutrition her dry mouth is much, much better. We need to figure out how to keep up that level of hydration for her. This is a big deal because the dry mouth makes eating difficult.

We see Edwin Smith on the 28th about placement of the feeding tube. He wanted her on the tpn to get her stronger. Since medicare has severe restrictions on the use of tpn, we were lucky to get the ten days granted to us. Somebody was a good advocate.

I’m feeling incrementally better each day. Able to stay up longer, do more. Still watching it because I want, need, to stay healthy. Follow up chest x-ray today, probably. I have my annual physical on Monday. There will be lots to talk about.

I’m over my foot on our neck whine. Back to head down, move forward, take it as it comes.

Of course this whole process, starting with Kate’s bleed on September 28th until now, has been stressful. As near as I can tell, I’ve not added to the stress by becoming anxious about outcomes. Not sure the toll the stress has taken on me, though I imagine it did lower my immune response to whatever viral truck slammed me down to the pavement.

Grateful for all the care and time and thought given to Kate, and to me. Grateful for the snow and the cold, more like Minnesota this last week or so, and welcome. Grateful for those dogs who wag their tales and put up with our chaotic schedule. Grateful for the Valentine Moon, for 72 years. Grateful for my recovery that’s underway. Grateful we live Rocky Mountains. Yes, adversity unveils gratitude. Strange. True.

 

 

Imbolc                                                                             Valentine Moon

FortThree weeks ago I drove through Denver around 8 pm exhausted and wondering why I was so damned tired. Getting home was hell. Today, thankfully, I’m able to be up  and get things done. Still operating at about half to three-quarters power, stamina not great, but improving. Stronger today is my day phrase.

Kate sounds great. Needing to recover I’m still at home. One thing I learned over the last three weeks is that if I’m not healthy, it makes our life here very difficult. I’m going to get back to normal so I can help her as much as she needs. A difficult balance, especially with her in the hospital.

They may insert the feeding tube while she’s at Swedish, too. This will give her two sources of nutrition, one intravenously and the other by drip directly into the gastrointestinal tract. She will able to eat meals as well. Several advantages here.

First. She’s been stuck at 78-82 pounds for months. Nothing nudges her out of that range. She needed a different approach.

Two. Electrolytes and other necessary nutrients will be carefully balanced in both the tpn and the feeding tube. Her diet up to now has been what she could tolerate with an emphasis on calories and protein, not overall nutrition.

Three. This will reduce, hopefully eliminate, her always nagging feeling that she wasn’t eating enough. This should help her get back to eating normally, without the attendant anxiety of trying to gain weight.

Four. Since she’s wanted this for several months now, these supplemental feeding tools give her a psychic boost, which she needs.

Five. Our big hope with this intervention is that it will lift her into a normal weight range where her diet and her stamina can both improve while the secondary effects of malnutrition drop away.

We’ve seen plenty of false dawns in Kate’s journey to this point. I’m hoping this is the one we’ve been waiting for.

Overcome

Imbolc                                                                              Valentine Moon

A question for the Woolly Mammoth meeting of this Monday: “…think back over time – older and newer – was there a piece of music, a song, or a musical video that had an impact on you, or that shaped your thinking, or who you are in some way, at some important juncture in your life, or time in your life.” Scott Simpson

Here’s my reply:

protestI can still hear the others singing, feel the resonance of my voice joining theirs, marching, marching, marching. So many times. The song was the old spiritual, We Shall Overcome. I sang it in protests again Vietnam, in labor solidarity rallies, on the occasional Sunday morning. I sang it alone, in the shower, driving in the car.
Whenever I hit the line, we shall over come someday, and even writing this, I tear up.
This song could be my heart’s theme song. It’s a musical answer to Shakespeare’s famous query, “To be, or not to be: that is the question: Whether ’tis nobler in the mind to suffer The slings and arrows of outrageous fortune, Or to take arms against a sea of troubles, And by opposing end them.” I’ve always been on the take arms side.
 
Though, parenthetically, I’m also a follower of the Tao which suggests wu wei, or non-doing as an answer. Both seem true to me. In the end I cannot just let things happen to me, or to the people and the society that I love.