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Hanoi 2013

Looking out of temple entrance on bamboo street

(I don’t know what’s up with font changes. I have no control over that.) 

Last night (our first night back in Hanoi) we went to the King Café for a toasted cheese and onion sandwich, French fries, and Hanoi Beer. While we were waiting for the food I walked outside to the narrow busy street and shift, I was there, all the way. A young woman told the man she was sitting on a motorcycle with to move up a bit so I could walk past easier. Such a small transitory action – and it opened a window for me to again feel the magic of Vietnam. I thought, my God, these people!

Passageway inside a temple

From email Leslie to David: We arrived in Hanoi last night earlier than we expected, but getting through airport immigration, etc. is a very lengthy process. The Camellia Hotel driver was waiting for us (Hallelujah!!) so finally got to the hotel about 9:00.

The night club next door is back in business and combined with

a Saturday night street crowd was LOUD! But they must have a midnight curfew, at least on clubs and bars, and all was quiet after that.

We have a balcony that looks out over a nice neighborhood from a bird’s-eye view, beautiful old multi-floored/multi-layered building that looks exactly like you’d want a VN building to look like: green and red tiled roofs, balcony railing with the green porcelain tiles like at the Citadel, and an ancient old woman sitting on a balcony, looking out…
We have no onward plans yet but will keep you posted. Your Dad wants to go the Delta area so hopefully the weather will allow.
_____________
I hardly ever remember my dreams. Last night I had the longest most complex dream I’ve had in many years.
Vendor

Leslie and I were standing outside the old Ross Avenue Sears. I asked her if she wanted to go in and she said no. Then I was nearby in a place like a park, with huge ancient trees, birds all around, and a male cardinal on the ground strutting his stuff, making his wings flare out and forward, singing for a female and the female hopping amongst the leaves making sweet little cardinal sounds,

Then I was running toward my car, up an incline that was getting steeper and steeper and then I was climbing and the ground was unstable and there were two people below me and a black woman to my right, digging her hands into the dirt to keep from falling and I was wishing the people below weren’t there because if either the woman or I fell
What a load; what balance!

we’d take the others down with us and I was wondering how the car got to where it was and what I was going to do if I got to it.

Then I was in a car with a couple about 60 years old and a boy about 8. The boy was explaining to the couple how Obama is a very bad man trying to destroy America. One of them asked where he got that idea and he answered, from “a 4 hour DVD.” They were patiently talking with him, trying to help him understand that maybe he’d been misled.
Then I was somewhere else and saw the couple. I was telling them how impressive their patience was. We were talking about how we never saw that sort of political or religious indoctrination when we were children. But then we realized that when we were children, at least for the middle class, America was basically all right wing and we were all being indoctrinated all the time.
Bun cha and nem (see below)


I awakened, realizing that what broke us out of the right wing rigidity were the Vietnam war and the consciousness revolution. I felt tremendous gratitude (not gratitude for the war, for God’s sake) that so many of us got out of that mind prison. I felt so sad about the terrible tragedies of that war. I thought what I thought last night on the street and what I’ve thought every time I’ve been here in Vietnam: why on earth would we ever go to war with these people.
How I wish, how I wish you were here.
Here we are, all under the same sky. Sitting here looking out of the hotel window across the rooftops of Hanoi’s Old Quarter.
We were in the process of getting tickets to Hue this morning and while the woman doing the
On the street

deal was on the phone with Vietnam Air, Leslie fell into conversation with a Vietnamese woman who said it’s flooding in Hue. I went to our room to check the internet: 14 inches of rain in two days, deep water in the streets. Never mind about the Hue tix!

The woman who gave Leslie the heads up works with a foundation procuring books and o
Woman at Hoan Kiem Lake

pening lending libraries in Vietnam, Cambodia, and Laos. She said an American veteran was the energy behind the foundation. He showed up and we talked. He was an 03 (US military designation for infantry). Pretty amazing encounter – two old veterans, both 03s, with deep connections to Southeast Asia, he with books, me with refugees. We got ready to go our separate ways and hugged, hard, “Welcome Home!”

Here is the Children’s Library International website. (For a real good time, check out the photos on the home page.)
We went on a banh cuon quest today and the place we were looking for was closed. My sharp-eyed travel partner had noticed people eating on the sidewalk a block earlier, so went back to that place, which turned out to be a stellar bun cha café 
Pedicure

with two menu items: bun cha and nem cua be. Bun cha is grilled pork and grilled pork patty served in a fish sauce and lime juice soup with daikon radish (or something like it) + cool noodles and a generous plate of cilantro, mint, etc. Chilies and garlic in vinegar complete the picture. More garlic! More chilies! Nem cua be is sort of like a square egg roll with a flaky crispy wrapper enclosing crab and assorted mysterious substances. What a feast! More on bun cha here. 

Another day… several things went wrong today. We used up too much time arranging for a trip to Sapa; we used up way too much time discovering that no bank in Hanoi will exchange travelers checks; we got a little lost; when we found what we were
Banh cuon

looking for we couldn’t find what we were looking for there; we got a little lost again; le sigh. The good parts of the day included time together in the morning, a motorcycle ride with a pretty Vietnamese woman named Quyen, trip to Sapa arranged, more bun cha, and through the frustrations we kept it together.

The next day. We found a bank that will change TCs. Breakfast (hotel buffet – including credible pho ga) with Leslie. Went to a coffee shop the man from Children’s Library International man. Later headed out on a banh cuon mission – it was great. We’re sweating garlic now. Nap. Another heart-stopping motorcycle ride with Quyen. She took me to apparently the last bank in town that will exchange TCs (1% commission on dong, 2% on USD). It’s interesting that she would take me. There was nothing material in it for her – maybe just wanted to help the old people. Taking it easy in our room. King Café for chicken with lemon grass and chilies, Hanoi beer.
Quyen and CK


From the Forward (by Gen. Schwarzkopf) to We Are Soldiers Still: “… we see the evolution of that country (Vietnam) and people as they find peace after a thousand years of war. And we see a surprising concern and tenderness for each other among men who once had done their best to kill each other. If those men, veterans of the bloodiest battles of the Vietnam War, can become friends and pray together for all who died on that ground on both sides, then the war really is over and we can all be at peace.”

Train to Sapa tomorrow night. These are the days.

Hong Kong November 2013

From Victoria Peak (Pacific Coffee)

Wow. Get up at 6 am Monday in San Francisco, awake all day, fly out of SFO at 11:45 pm that night for a 13.5 hour flight (THE best seats in economy, thanks to Leslie) getting into Hong Kong at 6 am, finally settle into a room at the Dragon Hostel at noon. Somehow I calculated that at 38 hours on the go. I slept for about 6 hours on the plane (the longest I’ve ever slept on a flight – thanks to zolpidem) and Leslie slept not at all. I was doing pretty well, but by the time we went to bed, Leslie had an hour of sleep in ~48 hours.  We may be getting a little old for this.

Dragon Hostel room. Photo taken standing in the bathroom

We’re staying at the Dragon Hostel, which is more a guesthouse than hostel. It’s in Mong Kok on the Kowloon side of Hong Kong. Mong Kok has the “highest population density in the world, with 130,000 people in one square kilometer” (Reuters, 2011). Here is a pretty good Mong Kok slide show from Reuters, though one of their photos labeled “a doorway” is actually, obviously, the entrance to a brothel. 

Now it’s Thursday morning. Awake around 5:30 am. Coffee in the room, talking in the dark, here we are again. The room is a little larger than a basic prison cell (6×9 feet) and has no window (window rooms get traffic noise). Small, cut off from the world, no problem. LOL, I was sitting on my bed with one foot propped on Leslie’s bed and my legs crossed and Leslie ran into my foot with her head. It really is pretty small.

From the Star Ferry

About the coffee: we’re traveling with a drip through basket, filters, immersion heater and enough coffee to get us through San Francisco and Hong Kong (HK has terrible coffee). We’ll buy a few kilos of coffee in Hanoi, some of which we’ll drink in Thailand (another coffee wasteland) and some we’ll take back to the US.

It’s a time of life when we seem to be repeating a lot. Today we took the #6 bus to the Star Ferry (smell the sea); ferry across the harbor; #15 bus up the Peak; coffee at Pacific Coffee sitting with a panoramic view over the city and harbor; Tsim Chai Kee for shrimp wonton noodle soup (shrimp with a wild, fresh taste, unlike what we get in Dallas); walking back to catch a bus to the Star Ferry, window shopping at Chow Tai Fook – a $2 million USD jade bracelet, similarly priced diamond necklace, all those kinds of things; back to the Star Ferry, talking about how we’ve ridden this ferry countless times; back to our little bitty room…

Entrance to Sincere House, where the Dragon Hostel is –
look past the head of the man at far right to barely see entrance 

Another day, more bus rides. But first, lying together in one of the little beds, then walk to Cherikoff’s Bakery (started in the 1920s by a white Russian refugee from the Soviet purges – his great-great grandson contacted me a few years ago) to pick up egg and ham sandwiches for breakfast in our room. Add some ketchup and Tabasco – alriiiight. Go down two levels of the MTR to put more money on the Octopus card.

Take the #2 bus to Chungking Mansions, one of the most international places in the world – on the ground floor a warren of money changers, halal curry shops, internet cafes, little stores of every imaginable sort (Need some clothes for a Nepalese wedding? This is the place), stacks of Chinese, Arabs, Africans, Bangladeshis (Hashish sir?), Nepalese, and of course plenty of western backpackers. Then there are about 15 stories of apartments, low-rent guesthouses, more cafes, little bitty factories, and a whole lot more. I love it; Leslie not so much.  
In the Chungking Mansions

Another Star Ferry ride, another bus ride (#7), more shrimp wonton soup, walking the streets, back to the ferry, bus, back to our room, and when it was dark, to the Ladies Market where we found nothing we wanted, much less needed.

She’s coming out of the Sincere House

Later I went for a walk along a street that is blocked to vehicles so that people have the streets. There were musicians, portrait artists, photographers, jugglers, poets. and an astonishing press of people. Leslie calls this urban compression. I’m IN the flow, Aes Dana on the iPod, INTO THE FLOW. Is this good or what!

Saturday we had dim sum and shrimp wonton for breakfast in our room. On the way to get the dim sum, there were children on the streets soliciting for money for the HK Community Chest. Every time we’ve been in HK, we’ve seen children and teens doing this for schools and so on. We always contribute and in return, get a little sticker which I put on the little notebook I always carry. Talk about a good souvenir! Hanging out in our room, packing, talking, good times, the best of times.
Crossing the street

For lunch we went to Good Hope Noodles’ new café. Now the man who makes the noodles (traditional way, by hand) works in the window. Another great meal – braised noodles with ginger and scallion and shrimp wonton noodle soup.  

Hanoi, here we come! Dragon Air into the sky!

On the way to Hong Kong and beyond, a tender heart

Picture a door leading from inside a house to outside. The threshold is about ¾ inch high… Threshold definitions:
A piece of wood, metal, or stone that forms the bottom of a door frame and that you walk over as you enter a room or building.
The point or level at which something begins or changes.
Hue, in the old palace grounds
Though I sometimes still carry a backpack traveling, I usually use a rolling suitcase these days. We’re on the way to Asia for about 6 weeks plus time in San Francisco going and returning. Yes, let the good times roll. It’s two minutes until the airport shuttle picks us up and I’m rolling the suitcase out the front door and as the suitcase goes over the threshold, Pop!, the handle breaks completely and irrevocably. This is the suitcase that replaced the one whose wheel came off less than two years ago as we walked to the bus stop to catch the A21 bus from Mong Kok to the Hong Kong airport on the way home. I didn’t realize the wheel was off until we were at the bus stop. Dang, I was thinking, “This thing sure is hard to pull today…”
Threshold: The point or level at which something begins or changes.
Hahaha, here we go. Rolling.

San Francisco, near David and Charles’ house

ATM we’re in San Francisco, staying with David and his partner, Charles B. and their dog, Jake. Lazy days, same old thing, buses and streetcars to Good Luck Dim Sum, the new Market Street Whole Foods (you didn’t think Whole Foods in SF is the same as Whole Foods in Dallas did you!), Castro, New Chinatown, all them places. Meals with David and Charles. Coffee, lunch at a sidewalk café, people, dogs, passing by and the occasional whiff of cannabis. San Francisco!
Our schedule of Hanoi to Bangkok in 6 weeks with stops here and there, depending on flooding seems like it might be changing already. It didn’t occur to me that Hanoi might have issues, but it seems to be directly in the path of Typhoon Haiyan. (Written a day before winds veered away from Hanoi – keeping it in because it’s what we’re thinking about.) By the time the typhoon hits Hanoi it will have deteriorated to a tropical storm with 50 mph winds vs. the 100+ mph winds of a typhoon. The Vietnam government has evacuated 600,000 people around Hanoi. So we’ll see what happens. Hopefully we can get to Hue/Danang/Hoi An and then onward. If not, the train into NW Vietnam to Sapa in the mountains is a possibility. Whatever.
Hue, at a tomb
Now there’s word that protests and strikes are happening in Bangkok. We’ll have to see how that goes too. A couple of years ago, about a mile from our hotel, the police raided some guys that were making bombs. One of the guys got out and threw a grenade at the police. It bounced off a pole and killed him. Of course we only saw it on the news.
Onward. Our plane takes off in six hours (Cathay Pacific). We’ve flown United (the worst), Korean Air, China Air, Thai International – and Cathay Pacific is the best at a decent price. The flight is supposed to take 13 hours, 25 minutes. We used Seatguru.com to get some primo seats (in one of three rows of two seats vs. the 3-4 seats in all the other rows and with some extra leg room for one of those seats.

Ban cuon lady in Hanoi. The people on far left are in
another cafe. This is a small place. Leslie’s favorite.

Hong Kong (Mong Kok), Hanoi Old Quarter, Ninh Binh, Hue, Dalat, Saigon, Can Tho/Mekong Delta, Bangkok, Chiang Mai (it’s the Banana Pancake Trail for sure).    
“Whole generations of westerners who went out there as soldiers, doctors, planters, journalists … lost their hearts to these lands of the Mekong … they are places that take over a man’s soul” (Jon Swain, one of the last westerners out of Cambodia in 1975).

Tender-hearted Leslie. I’ve known few people as truly tender-hearted as Leslie. She really does hate suffering and injustice and all that. She doesn’t like to hear about these

things, much less talk about them. Yet she spent most of her life deeply engaged and helping with people and in situations where there was enormous suffering and injustice. That was what she did. She changed a lot of people’s lives. She sacrificed a lot, laid it on the line, on the altar.

Please don’t take the word sacrifice casually. Think in terms of going eyes wide open into the fire, Think in terms of wounds.
Part of this was that she connected with people and would not turn away. It was personal with her. Her connections were personal and her battles were personal. What a warrior! A warrior for justice, against suffering.
So, here we go, on what really may be our last trip to Asia. 

Poems, a magician, holding the door, the beautiful Wind Rivers, Between Two Fires, dreams and dedications

These are all the poems I could find that I’ve written.

2011 – For about 6 months Leslie and some friends did an epic job of caring for a Sudanese woman who was dying from breast cancer – a refugee, a woman’s rights activist from bleeding Sudan. I helped some also. Maryam wasn’t really her name. I wish I could put her photo in – you’d see what I mean. The whole story is here.
To Maryam

Lying in the bed,
A little smaller each day
Slender once, thinner now
Mocha framing numinous eyes
Quick mind, quick speech
Clear thin voice
Following each thought
Through this strange land
Where everyone everywhere every time
Has gone each time like the first time
Fearful
Smiling in the face of fear
We’ll not speak of this now
Now that we’re here
Here like all before
Here like never before
Last week seeing your sister
With drawn face
Open to her sadness and pain
When I came unexpected
Around the corner
Before she could cover her soul
We are flesh, blood, bone, skin
The carriages of our souls
Rolling through
These streets this life
This pain, this joy
This longing
You know and I know
What’s real (and what’s not)
But we can wait for awhile
No need to rush to where we are going
From Hue 2011/2012 (not a poem, but it’s important to me): After a banana pancake breakfast (with honey and yogurt) and not forgetting a glass of very strong cafe sua and a few minutes later splitting an omelet/baguette sandwich, we took a riverboat cruise for 100,000VND (Leslie’s bargaining acumen) to

These mist-covered mountains, from the Song Huong (Perfume River)

Thien Mu Pagoda, 45 minutes up the perfume river. This where the monk Thich Quang Duc lived before he went to Saigon in 1966 to immolate himself in protest against the VN government and the war. The pagoda and grounds were quietly beautiful –understated and mossy with just a few people around and a view from the grounds across the wide river, past the plains, to these mist-covered mountains where we fought and bled, where so many from every side fought and bled and died, aching for life – me for a beautiful dark-haired girl whose photo was so washed out from the water that only the shadow of her left eye was left and now, 45 years later, looking across the room from where I write she’s sitting on the bed, the love of my life, beautiful, her hair white now and here we are in Hue and I look out through the glass-paned doors toward palm trees and mossy buildings – it’s misting in Hue.

Written at the last camp site after 2 weeks on the trail in the southern Wind Rivers


In the early morning sun,
Wishing you were here with me
Knowing we’re together soon
Knowing that’s forever more

I’ve loved you for these many years
I’ll love you many more
We’ll be together now
And forever more

Sun coming up (now) over foothills
Like it’s come up these past days
Over mountains stark and grey
How can I be here
In this place so high and wild

Campsite near where I wrote the poem at left 

All these years passing by
Not like a dream, not like a mist
Like treasures one by one
Passing through my life enriched

Working hard to make it so
Lucky that it’s turned out like this.


2010


and what lies ahead like a sparkling lake in the high snowy mountains, into lakes, lakes into streams, into lakes, into sparkling rivers and
These are the days
All the days we’re given
All that we have
Holding together

2009

No Mas

Mexican girls
Dark-eyes, sad-eyes, sloe-eyes, slow-eyes
Fiesta Mart perfume on
Skin so beautiful it takes my breath away.
Mexican girls
Walking arm in arm in lives
Arcing, peaking in the 10th grade
In love affairs bringing baby girls and boys
Sweet brown babies
Jessica, Junior, Araceley, Raymond
Riding in strollers with young mothers
Heads high in tattered pride
Knowing in this life there are no second chances and that
The 10th grade peak was it.
2007 – I found these lines among some papers. I have no idea who wrote them. Maybe me, maybe Robert Hunter. All I know is that I wrote them down on a scrap of paper.
Roses Round the Virgin

Joyfully she sings
I’ll be remembered
A 1000 years and over again.
And I saw
her tear.
Red roses, pink, white
In fragrant garland
On her breast.
No thorn, but
soft petals on
The Virgin’s breast.      
2007
Waiting
The red dirt cemetery is dry under the Texas sun
Monuments stand straight, tilt in red dirt
In the center, Confederate battle flags still fly
Honoring the men who fought for their country
My Grandmother is buried next to those flags
My Grandfather, uncles, aunts, others
Are next to those flags
A little concrete border runs around the plot
Someday we’ll put my mother’s ashes there
But for now, they’re in our dining room
In a box, with an old-fashioned knitted cover draped
18 years there, waiting for me to be ready
That’s pretty much my whole poetry output.

A magician

I was at 4211 San Jacinto and an older Vietnamese woman invited me into her apartment. I walked in and What! The apartment was literally filled with

I took this photo of a village meeting near Danang in 1967.
The women in the left and right rear are VN peasant
women archetypes. Not to be trifled with.

Buddhist statuary, incense burners, wall hangings, and the like. Her story was that all her life she’d been angry and subject to verbally and sometimes physically attacking other people. One night she had a dream and in the dream saw her apartment full of Buddhist icons and related. She started recreating the dream in real life and as she did, she lost the anger and people began asking her for advice. By the time I met her, she was counseling and doing ceremonies for many people and very effectively from what people told me.


I liked to visit her, sitting at the little kitchen table, drinking the café sua or tea she’d fix; she’d be smoking cigarettes.

Holding the door

I was holding the door for my wife as we were going into a market today. A couple was behind her so I held the door for them too. The man said thanks and something about me being “old school” and I said something like, “Right.” He says something about me being a Republican and I laughed and said no. Then he launched into a vignette about how he had told a woman he was Republican as he was holding the door for her and she wouldn’t go through. I said, “Right on!” And he muttered something about how he told the woman if she needed help she’d be happy to see him. I just smiled and moved on. It was getting kind of weird.
What I feel for the Wind Rivers

This is a good description of what I feel every time I go into the Wind River Mountains. It’s not that the Winds is the only place that would evoke these feelings – I imagine other mountains and deserts inspire similar feelings in other people. There’s a basin somewhere along the Maroon Bells 4 Pass Loop that also affected me in this way. 
The Winds. Twin Glacier.

“… I had already dreamt my way into their (the Brooks Range in Alaska) fabled midst many times over. And I can say, without reservation, that the age-old dreamer within me was vindicated by what he beheld – a landscape for which I felt an instant nostalgia, a landscape that inspired deep within me a terrible longing never to die, never to go blind to the world…” Dennis Schmitt

Between Two Fires

On a day when something nice would have been especially nice, something

Teaching at psytrance gathering

really nice happened.

About a month ago, in the context of writing about my spiritual development, I wrote about Between Two Fires, an extraordinary book by Christopher Buehlman. Today, the mailman handed me a surprise package with a book inside – Between Two Fires. The author had seen my blog and taken it upon himself to send the book and a kind and affirming note.  

Dreams and dedications

Leslie and I have always talked about our dreams – basically every morning. Now, we sometimes remember that one of us has had a dream, but seldom do either of us remember much content any more. Two important dreams: 

I lay dreaming that I was near an outdoor marketplace, watching a group of musicians set up to play. One by one, they began to tune, softly. Then in a soft clear voice, a woman sang the words, “Who knows … where the time goes … ” and at that moment I awoke and said, “To Leslie.” A true vision. Dedicated to my wife, Leslie.
Leslie and David in the rain in Hue


When my son, David, was about five years old, I dreamed one night that the end of the world had come. Everything was just slowing, slowing, slowing and I was drifting in space. I knew when it all stopped, that would be the end. David drifted into my arms as a voice said, “Into the arms of his father.” It was a calm encompassing peace. Dedicated to my son, David.


(On a three day combat patrol 1966 or 67)

Waking one morning to sit smoking
Watching the day begin through misty green
Slow, soft, green and mist
I could sit here for a thousand years. 

I wrote this for YOU – I think you’ll benefit from reading it


Introduction

I’m writing this because I still hear people talking about a family member suffering terribly at the end of life. In most cases, terrible physical suffering through the process of dying is an indication that quality of care is lacking. My focus is on cancer, but concepts apply to other conditions.

With current standards of care about 90% of patients with cancer pain can have their pain managed (i.e., acceptably pain-free and alert) with conventional means such as oral morphine and adjuvant medications (1). Most of the other 10% can be managed with alternative measures, such as surgery, nerve blocks, and so on. This has been the case since the 1980s (2). In any care situation there may be periods when there are problems – such as in the last few days of life – but these can nearly always be anticipated and successfully treated.

Ways that people do (the kinds of things that begin to happen when pain and other problems are under control): There was a water sprinkler set to hit the window of the patient’s room. Her son-in-law explained that she loved the rain.
Pain and suffering are not necessarily the same. Without going into a lot of detail, physical pain usually results from physical insult and can be enormously influenced by psychological, social, and/or spiritual issues. Suffering can be physical, but may also be psychological, social, and/or spiritual in nature. Most often, suffering is multidimensional. Quality care at the end-of-life addresses all these spheres of being.

I’m not saying it is easy to manage pain, depression, and other problems common at the end of life. I’m saying it can be done and should be done so that deep communication and true healing can occur.

My credentials for writing this are at the end of the post.

Living well within the process of dying

First, understand that you have to be in charge of your illness or your loved one’s illness. Knowledge is power. In addition to Google leading you to legitimate sites such as the American Cancer Society, NIH, Johns Hopkins, etc., you should search Pubmed. Pubmed is the NIH site that lists research articles (enable the abstract feature) on everything imaginable. Pubmed searches are often not quickly rewarding, but persistence is rewarded with breath-taking depth (this stuff really does turn me on). Search tumor type (prostate cancer, etc.), treatment, symptoms, and so on. One caution: not all journals are of equal veracity, so stay with known publications like Cancer, Journal of Pain and Symptom Management, Cochran Review, JAMA, etc. Here is a relevant abstract from Pubmed: http://www.ncbi.nlm.nih.gov/pubmed/23881654
Ways that people do: A few days after he died, a dozen red roses were delivered to her. With them was a note from him, thanking her for their life together.

But can’t you just trust your doctor to do the best thing for you? Hopefully your doctor and the institutions s/he is associated with will do what is best for you, but there can be differing agendas among patients, families, doctors, institutions, payors, etc. Vast sums of money are involved, providers/institutions are alwaysin a CYA (cover your ass) mode, communications vary in accuracy, and so on. If you think about it, without a lot of work, it is highly unlikely that everyone will be on the same page.

Communication

Assertive communications supported by knowledge are essential to receiving the treatment you want in terms of quality of life and managing symptoms. Do you want to be treated with chemo, radiation, and surgery right into critical care to die alone and in pain? The longer aggressive treatment continues, the greater the pain and other symptoms are at the end of life (3). That sorry story has been acted out millions of times. Knowing when to shift the focus from cure to care is a complex and challenging issue.

Is dignity important to you? At what point do you want curative treatment discontinued? How much do you want to know about the diagnosis and prognosis? Do you want to die at home or in hospital? And much more. To do well, you haveto know about your disease and treatment – and also insurance benefits, community resources, and more.

Some questions (more specific than is there any hope): What is purpose of the proposed treatment? The usual outcome of (1) chemotherapy at this stage and (2) surgery at this stage. Best outcome? Worst outcome? What will treatment be like in terms of quality of life during and after treatment?


Communication is obviously central to dealing with psycho-social-spiritual issues. Communication with loved ones can be painful – which often is an indication that the communication is important.

Ways that people do: One of my students told me that when she was young her sister had advanced leukemia. They slept in twin beds in the same room. One night, when the lights were out her sister said, “I’m afraid.” My student answered, “Me too” and got into bed with her sister. They slept together that night and all the rest of the nights her sister lived. Despite the fact that everything changed for the better, my student still wondered if she said the right thing.

Why would she wonder if she said the right thing? Because in her (white middle-class) culture, people are supposed to be brave (or pretend like it). They are supposed to be positive. They are supposed to have faith. What a load. How about being brave enough to be honest. How about respecting the person who is dying enough to treat that person as an adult deserving of open, honest and loving communications. How about having about as much faith and positivity as Jesus Christ. “My soul is sorrowful even unto death (don’t leave me).”

When everyone is brave and positive in a false front, the result is often emotional isolation for everyone concerned. What a tragic waste of energy and precious time.

Ways that people do: It was about two weeks before Jan died. Her mother was painting Jan’s toenails. “I guess you’re wondering why we’re doing this at a time like this.” “No, not really.”

When should hospice be involved?

Hospice services should be started early in the process of terminal disease, before symptoms are severe or psychosocial or spiritual problems develop.

It is a fundamental and grievous mistake to wait until things are bad to get into hospice care. Hospice is not an admission that nothing else can be done. Hospice (a good one anyway) is an affirmation of the fullness of life – physical, psychological, social, and spiritual. All these aspects of being are addressed in hospice care. As a result, quality of life is improved in most cases, especially when hospice is involved earlier than later.

Are people who are dying usually distressed to have hospice care introduced? No; they are often relieved.   

Managing pain

Here are some of the keys to successfully managing pain. These are applicable to other symptoms of advanced disease as well.

Oral medications are the first choice except when the pain is first being brought under control – when intravenous or intramuscular medications are used. Controlled release morphine is the first drug of choice for patients with chronic cancer pain. Intermittent patient controlled analgesia (PCA) via pump is fine for pain after surgery, but is inappropriate for severe and chronic cancer pain.

Issues of addiction and tolerance are addressed at the link below. Suffice it to say here, in terminal illness, addiction is not a problem (for several reasons) and tolerance is easily treated.

Medications should be taken on a schedule so that a relatively constant effect is maintained and pain does not recur. It is better to wake the patient for medicine on schedule than to let him or her sleep and then wake in pain. In other words, do not wait until pain is felt (much less, is severe) to take medications.

Primary side effects of morphine and other opioid (narcotic) medications include nausea and constipation. Nausea resulting from morphine or other opioid is what is known as an initiating side effect, i.e., it occurs when therapy is begun and usually ceases or at least decreases after a few days. When a person experiences nausea from morphine or other opioid medication, the antiemetic is then given on schedule so that nausea is prevented. Often the antiemetic can be discontinued in days or weeks.  Constipation is ongoing and treatable.

Other principles are discussed at the link below.

You can see the basic idea is (once under control) to prevent pain, nausea, etc. Basically in a pain situation it is nothing other than gratuitous cruelty to demand that a person suffer before receiving relief.

Ways that people do: The hospital bed was in the living room so that he could look out into the neighborhood where they had lived all these years. He could see a rose bush he’d planted long ago.

Did you ever have a painful procedure or treatment done and were given pain medication after the treatment? That’s not quality care; it’s poor care that demonstrates a lack of concern about you. It is not rocket science. MEDICINE SHOULD BE GIVEN/TAKEN BEFORE THE PAIN EVENT AND/OR BEFORE PAIN RECURS.

“The link below” No longer operational

This links to a website I created – Terminal Illness: A Practical Guide for Patients, Families, and Providers (hosted by Baylor University). There are straightforward discussions of what to do about pain, difficulty breathing, depression, anger, etc., etc.; how to tell when someone is dying; organizing family and friends; and many other problems and issues of dying. There is also a good low-cost coffin resource on the site. 

I invite you to use this website, as well as Pubmed and other suggested resources to do the work that will ease your loved one’s passing as well as your own passing. Link does not work 

Ways that people do: “Finally, we’re being honest with one another.”

References

(1) Oral morphine for cancer pain. http://www.ncbi.nlm.nih.gov/pubmed/23881654
(2)  Coyle, N., Adelhardt, J., Foley, K.M., & Portenoy, R.K. (1990). Character of terminal illness in the advanced cancer patient: pain and other symptoms during the last four weeks of life. Journal of Pain and Symptom Management. 5,2.

(3) Predictors of Symptoms and Site of Death in Pediatric Palliative Patients with Cancer at End of Life.

Credentials

My credentials for writing this: I have provided care (as an RN, later as a nurse practitioner, and also as a volunteer) for many people at the end of life. I founded the first hospice in Texas, which, when I left was serving more patients than any other hospice in the US. I have taught palliative and hospice care in undergraduate and graduate schools and have written a book and about 30 articles and chapters in professional journals/books on end-of-life care.

Kind of an ode to cigarettes

Boom!
I’ve thought for years that if I get cancer and it’s clear that it will kill me, one of my first stops will be to pick up a pack of cigarettes. I’m thinking Marlboro lights since it’s been ~40 years since I had a cigarette – kind of ease into it, you know. What follows is taken from some writing on my time in the Vietnam War… 

At Con Thien (the Hill of Angels), near DMZ
Photo by D. Duncan

We had 4-pack C-Rat cigs – Lucky Strikes (“Toasted”), Salems, Winstons; and whenever someone went up to Hill 55 they’d bring back some cartons of Winstons or Marlboros or best of all, Viceroys. Cigarettes and war go together really well. Smoking cigarettes was about the best thing we did. That and being not dead.


Much of the countryside where we were was deserted. There were people living to the northeast of us and in the west where Dodge City was. Otherwise, deserted, ghostly. Once on patrol in the north we came across a partially intact temple – even part of the roof was still there. Sitting inside, dry, having a smoke, happy, comfortable. That’s a stellar memory. 

(On a three day patrol)
Waking one morning to sit smoking
Watching the day begin through misty green
Slow, soft, green and mist
I could sit here for a thousand years. 

A spiritual and religious journey, a knight and a girl, some messages


A spiritual and religious journey

I remember when I was 8 or 9, sometimes on Sunday mornings before church there would be more of the endless conflict and anger in the house and I would be so incredibly miserable. I would feel like the misery of the world was in me and on me. I would feel like, I am that misery, that’s me (I didn’t know that much at the time).

In high school I went to a church a few times late at night (amazing that they would be open like that) and prayed for a vision or healing or something. Nothing ever happened.
She’s one of the physicians at the REACH Clinic at CMC, where all pediatric
sexual abuse cases in Dallas go for forensic exams and treatment.


In Vietnam, about 6-8 months into the thing I started thinking a lot about a girl with only one leg who lived a few klicks from our position. I was thinking all the time about just walking out of the perimeter, like a normal person, walk to where that girl lived and take her an adjustable crutch so she wouldn’t have to get around in the bent and twisted way she walked with her too short stick of a crutch. Later I wrote, “I’ve spent much of the past 40 years taking a crutch to that girl.”

New Years morning at Big Bend

After VN I was drinking pretty heavy and had some violence issues. But I fell in with some hippies and soon I quit drinking. Along the way I had some visions (like, we’re all One, and Love, and Beauty) that fundamentally changed my self, including world view, self-perception, spiritual capacities – everything. I became a gardener, a baker, a nurse, a better person. I spent the next 35+ years serving the poorest of the poor, the most forgotten of the lost, the sickest of the sick (just like my wife, who showed me The Way).


My first spiritual teacher was Stephen Gaskin, one of the spiritual leaders of Haight-Ashbury in the 1960s. He taught that the visions were real and that trusting and following them could be a worthy path. I learned the Boddhisatva vow from him and I took it: To liberate all sentient beings (still working on myself, of course). There was a direct connection between the vision of Oneness and the vow and entering service to humanity.


Island Lake in the Wind Rivers

Stephen Levine was another of my teachers. He had been a part of the San Francisco Oracle and later was part of the conscious living-conscious dying project along with Ram Dass and others. Stephen taught me mindfulness meditation – he was a manifestation of the Eternal Now and service.


Reading the Bible, Tao Te Ching, Carl Jung, Be Here Now, Thomas Merton …

Going deeper into the dharma, working on loving kindness, first in hospice, then for many years with refugees and immigrants, and in other situations.

Living fairly simply, not wasting too many resources.

My third teacher was Dan Foster, a fellow traveler, a distinguished physician, teaching Christian living and theology, saying things like, “everyone/everyone’s life is a parable … high adventure … the storm always comes … blessed are the poor” and so much more (those are just things I carry with me all the time). Dan and his teaching lifted me up during some difficult times.
Likkie from the Incredible String Band (part of the tribe)


I’ve been in the same Bible study group for more than 20 years. We meet at 7am every Wednesday, rotating the leadership every week. Centering in the center of the week. Solid.

For me, the heart of Christianity is living according to what Jesus taught rather than doctrine or questions of what faith somebody else (like a denominational committee or the Apostle Paul) thinks people ought to have. I’m completely comfortable following my own visions and my own moral and ethical compass, supported and informed by Jesus’ teaching and Buddhist philosophy.

I love the old-timey Baptist hymns like In the Garden, A Closer Walk with Thee, Amazing Grace, and so on – and older music, like Missa Solemnis and Mass in B minor. http://www.youtube.com/watch?v=mpWY8UrYFJc
The Agape Clinic waiting room – Hope!

The Dalai Lama was in Dallas and agreed to come meet some of the refugees here. He gave a homily at Grace Methodist and afterward there were 30-40 people around him to receive a blessing. I was at the back of those people, just checking it out, when he reached between some of the people and took my hands in his and looked me in the eye and said, “Keep doing this work.” He had never seen me before that moment, that blessing.


I’ve trekked deep into the high mountains, into the rock and wind and ice. I’ve slept in deserts where the stars fill the sky and silence fills me. I’ve crossed the Pacific Ocean, endless and blue. I’ve been in many a forest, mysterious and beautiful. I’ve walked in ancient temples. I’ve practiced Christianity and Buddhism. I’ve listened to preachers and teachers. I’ve studied and read and meditated. I’ve spent a lot of time with people who were sick, people who were suffering. I’ve been with people as they died – “watch with me.” I’ve prayed and I’ve sung sacred songs. I’ve danced beneath the starry sky. I’ve known many sinners and a few saints. I’ve meditated on my death. A lot has happened.  

In the past few years I’ve reconnected with my tribe from years gone by. I’m in touch with only one of my original brothers, Jeff, and now he’s slipping away. But the thing about a tribe is that it’s a tribe, so here we are, together, dancing as the sun comes up.

One of our hospice patients – so much pain

I started going to a new church about a month ago. Here are the core beliefs:

Love is the doctrine of our church;
The quest for truth is its sacrament,
And service is its prayer.
To dwell together in peace,
To seek knowledge in freedom,
To serve humanity in fellowship,
To the end that all souls shall grow in harmony with the divine –
Thus do we covenant with each other.
I think that says it well for me.

A book about a knight and a girl

When I got to the end of the book, Between Two Fires, by Christopher Buehlman, I actually cried – not a common response from me. The book is about a knight and a girl during the plague years. Though there are many differences between us, I identified more strongly with the knight than any (literary or living) character I’ve encountered in many years. He had been stripped of his knighthood, excommunicated, and had lost his home and family. He joined a band of brigands and was wandering the countryside, stealing and killing. The bandits came upon a girl at a farm where everyone else was dead. Some of the bandits were getting ready to rape her, but the fallen knight killed them. He and the girl then set out on a quest, for what they didn’t know.
Refugee child (Burmese Karen)


They journeyed through the plague-decimated countryside and towns guided by the girl’s visions. Along the way people helped them and hindered them and gradually, they encountered greater and greater evil. There were temptations and fear and pain and love and joy. In the end, there was a terrible battle, then peace; there was redemption.

It blew my mind the extent to which I identified with the knight, though I haven’t lost anything close to what he lost, nor done what he did. But I have been on noble quests; I have faced death squarely in battle and elsewhere; I’ve defended the defenseless, been face to face with evil, tried hard to do the right thing, had visions/followed visions. I have been redeemed.

Some messages

In the past few days I’ve received these messages…

Leslie doing what she does

… so glad that you and David were willing and able to come share in that experience with me. It meant so much to have my family there … you both are a vital part of that family. Thank you again for being there, writing this great piece, and reminding me of it so that I could enjoy it again. Chris


I want to thank you for being such a great mentor and inspiration to all of your students … for the life lessons and experiences I received while at the agape clinic and in community health. Aydrien

Thank you for sharing this gratitude with me! I’m so happy to share the special moments when we connected … I was so happy to introduce to you the most important beings in my life. Rachael

Namaste

Resilience, 2003-2013

I was talking with someone at a festival a few weeks ago and was thinking while we were talking that this is a tough, resilient person. Unrelated to that thought, yesterday I was looking for a chapter I’d written on another topic to send to that person, and happened across some article abstracts on resilience (written by other authors). Some are abbreviated and copied below. These relate specifically to the elderly, a population of great personal interest to me; but of course they also relate to everyone. Resilience, toughness – essential attributes…
Our front walk at dusk – 4 o’clocks blooming into the night, fragrant
This ain’t no party,
This ain’t no disco,
This ain’t no foolin’ around (Talking Heads, Life During Wartime)
She is clothed with strength and dignity;
She can laugh at the days to come (Proverbs 31: 25)
————–
Resilience as a Protective Personality Characteristic in the Elderly.

In a sample of elderly from the general population aged 60 years and older (N = 599, 53.6 % female; mean age 69.6 years) resilience was assessed as a protective personality factor for physical well-being by means of the resilience scale (RS; Wagnild and Young, 1993). The elderly reported lower subjective body complaints, when the amount of resilience was higher.

CONCLUSIONS: The results of a regression analysis showed that resilience was a significant predictive variable for physical well-being besides age and sex. The amount of resilience was lower in women as in men. An age-related effect could not be found.
Arch Gen Psychiatry. 2004 Nov;61(11):1126-35
Old Route 66 in New Mexico – empty road

.

Dispositional optimism and all-cause and cardiovascular mortality in a prospective cohort of elderly Dutch men and women.

BACKGROUND: Major depression is known to be related to higher cardiovascular mortality. However, epidemiological data regarding dispositional optimism in relation to mortality are scanty.
CONCLUSIONS: Our results provide support for a graded and independent protective relationship between dispositional optimism and all-cause mortality in old age. Prevention of cardiovascular mortality accounted for much of the effect.

Association between depressive symptoms and mortality in older women. Study of Osteoporotic Fractures Research Group.
My campsite at Unify. Neighbors were Luke, Stephanie, and Drewva.
Some of the Austin crew were a few tents away.
Archives of Internal Medicine

CONCLUSIONS: Depressive symptoms are a significant risk factor for cardiovascular and noncancer, noncardiovascular mortality but not cancer mortality in older women. Whether depressive symptoms are a marker for, or a cause of, life-threatening conditions remains to be determined.

Aging Ment Health. 2005 Jul;9(4):354-62.

What influences self-perception of health in the elderly? The role of objective health condition, subjective well-being and sense of coherence.

CONCLUSIONS: Subjective evaluation of health correlated highly with the self-evaluation scales that recorded subjective well-being (life satisfaction, anxiety, and depression), and with the sense of coherence, but not substantially with objective health-related variables.
————-
Some things that happened 2003-2013
David graduated from St. Marks (Salutatorian)
David went to Rice
I was teaching at Baylor, working at Agape Clinic and in the community, still in the same men’s Bible study
Phillip Anthony (inertg) – psychedelic music in an aspen grove
David, Jeff, and I spent two months in SE Asia in 2005
Though the Infectious and Tropical Diseases book came out in 2006, I was pretty much finished writing for publication
Leslie became Agape Clinic Director – and had a distinguished tenure characterized by growth and prosperity for la clinica
David graduated from Rice (3 years)
Leslie took care of her Dad, before he got sick and after
David and Chris went to Europe for two months
David got a fellowship to work in Cambodia for a year; traveled in Cambodia, Thailand, New Zealand
Leslie retired
I started going to festivals, several with Jeff; now I’m involved in co-creating gatherings (click link in photo above for some music)
I retired

David and Leslie near Hue. This is my story 

We traveled to Southeast Asia multiple times

I spent 11 days in the hospital – critical care, vent, touch and go. Jeff said, “Well the worst thing that can happen is you’ll die.”

I started backpacking (including an epic Wind Rivers trek)
David graduated from Berkeley Law
David got a good job and moved to San Francisco
Leslie and I took many trips to SF
Leslie and I helped Tom and Sylvia through Sylvia’s pancreatic cancer (as did Eloise and John)
And of course all sorts of personal/interpersonal experiences

Backpacking essentials

Boom!
I was talking with a man named Stephen about backpacking. Out of that conversation I decided to post kind of an annotated listing of the main things I’ve posted on backpacking. Hopefully it will be helpful to someone in addition to me.

What to take, including a little on car camping.


Backpacking food, including links such as the freezer-bag cooking site (fbc is where it’s at, food-wise.)

In the Cirque of the Towers in southern Wind Rivers – Lonesome Lake

Car-camping in Colorado – good places for car camping. Copied from another website.


Maroon Bells is a great four day hike at high altitudes. Some people say it is the premier Colorado trek. Stephen – highly recommended – in a Natl Forest area, so not as many restrictions as a Natl Park.

The Wind River Mountains are my favorite mountains and this was my epic hike in the Winds.

I was a climber, a hiker, and a camper when I was young. But after two years in the Marine Corps, including 13 months sleeping on the ground in Vietnam I’d had enough of the outdoors. In 2007 I saw a photo my son had taken in Colorado and suddenly the mountains were calling. Over Thanksgiving 2007 I went on a backpacking trip to Big Bend with the Sierra Club. Something magical happened (copied from a trip report)…


Watching the sun come up out of Mexico, 
New Years morning 2008

When I got up the next morning I walked into the woods to urinate and as I unzipped I heard a sound off to my right. I looked and about 30 feet away (I later paced it off – 10 paces) was a mountain lion standing sideways to me, looking at me. Big, beautiful tawny, big eyes. I flashed on Juana, a Mexican woman I know who has power over animals and I did what I though Juana would: I said “Hello, how are you” and went ahead and peed. Meanwhile the cougar watched me, sneezed a few times, sat down and licked her chest. I finished, zipped up and said something like “I hope I see you later” and walked away. When I looked back she was still sitting there, watching me.  A little while later at breakfast I told the people in my group what had happened and several of the men went to see if they could see it (they assumed it was a male, I thought it was a female – we later found out which it was).


Two days later… In the morning the tents

On the Highline Trail in the Winds – Jeff in tent

were covered in (granular) ice an inch thick in some places. The plan was to break camp and hike to the lodge for breakfast and then hike out of the mountains. Taking the tent down was soooo slow, with so much ice (inside the tent, too) and my fingers icy cold and then numb and kind of hot feeling – how many times long ago climbing had they felt that way – knocking the ice off and untying lines and then the lion returned and began to scream. I saw it again, about 40 feet away, watching us. It stalked our camp, screaming and hissing 5-10 times as we broke camp. 


Later I learned that I shouldn’t have turned my back on the cougar – and I thought about that. BUT, I felt like it was important to be cool and backing away seemed inconsistent with cool.


Planning calendar (when to go where)
Asia
Grnd Can
Rocky
Mts
Sierra
Utah
Big Bend
N Cali
Appa
New
Mex 
Okla &
Ark
Jan 
x




x
x

 X
 x 
Feb 
x



x
(wet)

 X
 x 
Mar 
x
x


x

(wet)

 X
 x
Apr 
x
x


x

(wet)

 x
 x
May 
x
x


x

(wet)


 x 
June 



x


x



July 


x
x


x



Aug 


x
x


x



Sep 
x
x
x
x


x


  x 
Oct 
x
x


 x
 x
x

x 
 x
Nov 
x
x


 x
 x
x

 X
 x
Dec 
x




 x
x

 X
  x 
Year-round: Lost Coast, some other Cali, Oklahoma (see below)
Winter: Asia, Big Bend, Big Bend State Park (links above), Grand Canyon, Buckskin Gulch/Paria Wilderness in Utah
Spring: Big Bend, Arkansas, Oklahoma – also see winter
Summer: Colorado, Wyoming, Montana
Local (N TX): Texoma, Dinosaur, Mineral Wells State Park
Other close TX & OK: Bastrop, Hill Country (close Dec & Jan)
Other backpacking posts


Our campsite in Titcomb Basin, Wind River Mountains – Deep Magic

Hospice visions, the way our house smells, an extraordinary woman


In the early days of hospice we knew we were in uncharted waters.

We were doing something new, something beautiful.

It was visionary.

We were in the valley of the shadow of death.

Every day, all day.

It was all a vision – something like hospice as we did it doesn’t emerge from ordinary consciousness.

One of our patients. Photo by Debora Hunter (featured at the Smithsonian
Museum of Fine Arts, Hirschorn Museum). Spend some time with this
photo. Make it big. You’ll be glad you did 

There are songs and there are songs and this song (below) is deep in the foundation and structure of my life and love. First, it is a tribute to Leslie and how she was with me in the darkest hours. It also tells exactly why we were there in hospice, choosing to go into the valley.


In the attics of my life, full of cloudy dreams unreal.
Full of tastes no tongue can know, and lights no eyes can see.
When there was no ear to hear, you sang to me.

I have spent my life seeking all that’s still unsung.
Bent my ear to hear the tune, and closed my eyes to see.
When there was no strings to play, you played to me.

In the book of loves own dream, where all the print is blood.
Where all the pages are my days, and all the lights grow old.
When I had no wings to fly, you flew to me, you flew to me.

In the secret space of dreams, where I dreaming lay amazed.
When the secrets all are told, and the petals all unfold.
When there was no dream of mine, you dreamed of me.

(Attics of My Life, Grateful Dead)

We set out consciously to be and sometimes we were the singer, the player, the flier, the dreamer… healing.

We believed, we were committed to the idea that people should not be alone in their time of dying. We always started with the pain, dyspnea, nausea, etc. Then the psychological-emotional-social-spiritual work and the unfolding could begin. Sometimes the purpose of life realized in those last days: Reconciliation with self, with others, with God.

A dream manifested in hard, hard work in the face of suffering and death in the deep heart of the night.

http://www.texasmonthly.com/story/passing Dick Reavis captured the spirit of hospice in this article (though he misrepresented me). 
———————-
Country sourdough cheese bread. Whoa!


Today the front rooms of our home smell of the lavender from the big plant that hangs into the street in front of our home. Yesterday I accidently broke a 2 foot branch of rosemary from one the plants by our sidewalk, so that branch is perfuming the back of the house.

This home often smells of bread baking (even the rising of the sourdough has a wonderful fragrance). It smells of pies or cookies in the oven, of coffee being ground, of pecans or walnuts roasting, of almonds being ground. The kitchen smells of chillis, onion, garlic, cilantro, citrus, basil, lemon grass, mint, curries.

The prayer wheel in the front room turns with the breeze from the fan…

————————

Leslie (see my Facebook homepage for more recent photo)

I was lying beside Leslie, thinking that I know many nice people, many good people, many competent people, many beautiful people, but I know very few people who have been as merciful with so many people for as long a time with as much competence and complete selflessness as Leslie. She gave it away like it was water.


All that and our life together, making love with Leslie!!!

My soul.

These are the days.