Digestion, Tibetans, Grace and Grit, the Sun... and a Dream
2010 July 02 - 14
Created by Tom 9 years ago
Wednesday, July 14, 2010
I keep thinking I'm going to get to writing this update, but then things change, my mental state takes another spin, and/or something new needs to be done and time marches into another day. I'm now going to see if I can just push it through...
The biggest news is that dying is now explicitly on the agenda again. Karen's struggle with nausea is at the center of her dissatisfaction. It haunts her even when it isn't the main thing in her consciousness. She's had some success juggling a new regime of her usual drugs, but it has turned out not to be a full solution. An experiment with a new drug, Zofran, produced headache and increased constipation, so that was sidelined for now. Her hospice nurse has one other, a combo suppository, that she would like Karen to try. We shall see....
If handling the nausea were the only factor, the solution would be more simple. But all the nausea meds also impact her awareness, so she's starting to drift back into her drugged-up fuzzy state of mind, which she is very anxious to avoid. That factor is less problematic for me than it was six weeks (or so) ago, as I am familiar with it and expecting it as part of the dying process. Another factor is that whenever the nausea abates, Karen becomes more adventurous with food; up till today, she's been fairly free-wheeling with her chew-and-spit version of eating, both with the usually fairly good mainstream meals served at the nursing home and with the Subway sandwich I brought her (cutting the seeds out of the tomatoes and then discovering that sliced olives sneak into what she swallows and make problems in her stomach tube, which I then "milked"). A mainstay of her diet is now 7-Up, a version of which is available from the nursing home on demand. Given its high-fructose corn syrup content, she tried healthier versions (organic sugar, etc.), but nothing did the trick like what they serve here. Her other mainstay is saltines (with some delicate experiments with peanut butter on them). She still does mango smoothies, but much less in the last few days, and she hadn't had her once-loved super-healthy chocolate meal replacement drink (Orgain) in about a week until today (unfortunately it has become an "iffy" food). Most of her other "safer"/swallowable foods are sweet (hard candies, sweetened yogurt, grape juice, graham crackers) so she really wants to try some salty foods. Yesterday morning she had a sore throat, so we tried miso with some garlic. It is still in a Stage One Trial...
Actually her sore throat was a watershed event for me. I didn't know what was wrong when she began suddenly loudly wailing in the middle of the night that a lump in her throat hurt so much! I leapt out of bed and raced to her side, heart pounding out of dreams. I had no idea she had a sore throat. I thought it was the dry mouth she sometimes complains about, since lately she often sleeps breathing through her mouth. I asked her what was wrong. I asked her if she wanted some ice or juice. There was no answer. She had fallen back to sleep. After 5 or 10 minutes I stumbled back to bed and lay there wondering if she had developed throat cancer, which drifted off into a hundred other strands of thought until, an hour or so later, I got back to sleep. In the morning she remembered none of this; she was apparently too drugged at the time. But I did find out she had a sore throat. Thus the miso/garlic concoction, which she felt her whole body responding to, and which seemed to help the sore throat, but was a little potent for more use later in the day.
Her only bowel movement in about 10 days was yesterday morning, a little one about the size of 3 almonds. This despite daily laxative suppositories and daily phone energy healings that together used to work wonders. She very much values these long-distance energy healings from chi gung masters, which cost $90 each. On the other hand, it seems increasingly clear that she would not be in shape to fly down to the Mexico City shaman (except maybe first class??) so, although we keep finding out more on this subject and we aren't totally taking it off the table, it seems less likely as the story of "living through her last days" takes shape. Among other things, her enhanced drug regime is making her more often tired and a bit dull. If, as we expect, the cancer is spreading in her digestive tract, the likelihood is that the drug dosages will continue to increase and we need to account for that in our expectations for the next weeks (including the need to be more careful about her moving around when she's drugged).
One of the factors that brought this story-shift to a head was watching a video together last week. The video is UNMISTAKEN CHILD, a 2008 _documentary_ covering five years of a Tibetan Buddhist monk's search for an unknown child who is (or is believed to be) his beloved deceased master. His journey involves a dream and then consulting with Buddhist seers and lamas including the Dalai Lama, who offer various forms of guidance for finding the child and tests for identifying him. When the child is found and passes all the tests -- which usually involve choosing possessions of the late lama from a batch of similar objects -- the Dalai Lama gives official recognition of the child as a tulku (reborn lama). The now 6-year old child then takes part in various ceremonies and begins his re-training as a lama. It is also a beautiful love story between the monk and the boy, and a breathtaking glimpse into the landscape, people, and culture of Himalayan villages. Karen was so struck by the pureness, simplicity and happiness of the people that she suddenly (and unexpectedly) said she wanted me to go to the gathering of FourYearsGo organizing teams in San Francisco at the end of the month. I had been invited to this event but had declined due to Karen's illness. On seeing the Tibetans, Karen felt tremendous hope for humanity very similar to the hope she feels whenever she hears about the Pachamama Alliance, a group of indigenous Amazon people and Western activists working to shift civilization's story about its relation to the Earth. The Pachamama Alliance is the instigator of FourYearsGo, an initiative to inspire existing people and organizations to up-shift their transformational efforts to reorient global society within four years. But the prospect of my being gone from Eugene for four days raised all sorts of issues about Karen's condition and care resources, including review of our ideas of whether she is on the mend or in the midst of her dying process. As things have unfolded, it is still uncertain whether I will go. Of course if Karen is in any kind of rapid decline I would not go. However, our dear friend from Oakland, Debbie Tanner, has agreed to come up to Eugene during that time to either supplement or replace my Karen-care during that period. Thanks to the flexibility of Amtrak, Debbie, and the folks at FourYearsGo, I will be able to make a decision a few days before my ETD.
Another influence has been our reading of Ken Wilber's GRACE AND GRIT. Ken Wilber, a world-famous writer on integral philosophy, non-dual spirituality, and transpersonal psychology, fell thoroughly in love with beautiful, brilliant Terry "Treya" Killam in the early 1980s, and they soon married. Within days Treya was diagnosed with breast cancer, and GRACE AND GRIT is the story of their extremely intense journey together through that and subsequent illnesses and trials until her death five years later. Karen and I are half-way through the book and, although we do not have the intellectual and spiritual stature of these two people, nor have we faced anything as extreme as their situation, the parallels are intense and instructive. Facing death is a major theme in the book as well as in our lives. The story chronicles the collapse of Ken's personal gift and calling -- his writing. Before Treya's illness, he wrote a book a year, many of them now classics. The evaporation of his muse left him suicidal, bitter, and overwhelmed by his support role. Their relationship collapsed in pain and fury, only to be transformed with therapy, life-changes, and renewed spiritual work, through which -- among other things -- Ken learned to set boundaries he needed to do his writing. Talk about a story speaking to my condition!
The weather is now hot with little rain, although it gets cold at night. Every day I wheel Karen outside, usually remaining on the nicely landscaped property, often chasing the last sun of the evening. Karen, who is often very cold, often melts into an ecstatic nap in the warm sun. We spent one late afternoon on the rolling lawn of the next-door Bible college, and on another day I pushed Karen up the hill across the street from the nursing home to the ridge that shades that property in the late evening, which gave us an extra half hour of sunlight before we watched the Earth horizon rise to swallow the sun and I wheeled Karen back to her room. On these walks, Karen's need that I wheel her very slowly has a major impact on me: My joints and shoulders ache in a way that they wouldn't do if I were pushing her at a more comfortable pace. It is very interesting to watch the way slowness taxes me; it happened when we used to walk together, too. I'm slowly getting used to it. In general the heat is pleasant, although it sometimes sends both of us to bed in the middle of the day.
The staff are still great and some of Karen's friendships with them have deepened. Sometimes I worry about their other patients when Karen engages them so much in conversations about their lives. She is much beloved by quite a few of them, with the exception of a couple of guys who clearly feel the job is beneath them, one of whom Karen straightened out in a major way and he changed his behavior significantly. She is still a force to be reckoned with, despite her ailments and frailties! Her latest problems include a sore below her tailbone (an area which is startlingly caved in; the soreness is from sitting, even when she is sleeping, to prevent gastric reflux), for which I got her a soft toilet seat and ordered her a sitting pad with the area around the tailbone cut out. And today her tongue was swollen and cracked, so our much-beloved Italian hospice nurse Roxanne is providing a special mouth-rinse for it. And a new pain has shown up in her belly, albeit only occasionally. How much of this is fixable and passing, and how much of it is part of the curve of her hospice future, we don't know yet.
Although I'm still with Karen about 90 percent of my time, I'm getting back into my world work a bit, having posted a blog entry today -- my first public statement in three months. My friend and colleague Roland Allen is healing well and the Co-Intelligence Institute is slowly getting running again. I began writing my belated Co-intelligence Institute fundraiser, had some extensive correspondence with my evolutionary colleague Michael Dowd, and contributed significantly to conversations on the National Coalition for Dialogue and Deliberation listserv regarding a major controversial national citizen deliberation program about the federal budget and deficit held by the AmericaSpeaks organization. And today I had a very engaged conversation with my daughter Jennifer about how to enhance the work of MoveOn.org, who are now focusing their attention on addressing corporate power over our political and governmental systems.
Finally, a very intriguing development occurred with an email from a woman in Southern California who was led to an article of mine by a dream which told her to check out "possibilities and outcomes" on the web, and she discovered my "Crisis Fatigue and the Co-Creation of Positive Possibilities", which had originated in a letter to a friend in 1998 which I edited and sent out to my list in two versions in 1998 and 2003, the final of which I posted at
http://www.co-intelligence.org/crisis_fatigue.html seven years ago. I invite you all to read it. It blew my mind, and proved extremely valuable to me right in the midst of my current struggles. It is interesting to find oneself inspired, comforted and enlightened by something one wrote a decade ago. So thanks, Tom, I needed that. And thanks to whatever led this new friend to dream her way to my website and write to me.
More later. Thank you for being there, interested and supportive, as this journey continues to unfold.