. Wednesday, June 23, 2010 Dear friends, Better and better, worse and worse... then better?... Sunday Karen had a fabulous visit in her nursing home room with her sister Michelle and brother-in-law Bruce, who had come for the afternoon from their home in London via Bruce's Stanford MBA class reunion in the San Francisco Bay Area. Our friend Meg Parker had completed Karen's complex shopping list to lay out a full salad bar with soup, sandwiches, and fizzie juices, so it was a truly royal lunch. Probably the highlight of this 5-hour afternoon conversation was Karen and Michelle sharing family stories that enriched, complexified, and reframed much of what they each understood about their shared family. Since Karen, as the oldest child, had gone off to college when Michelle, as the youngest child, was entering grade school -- and their family's circumstances and dynamics changed significantly in the intervening 14 years -- their two experiences of their family (which included two brothers born between Karen and Michelle) were significantly different. Previously unshared family and personal stories of struggle, pain, and strength surfaced and profoundly deepened Karen's already strong bond with Michelle. (This has implications for Karen's ongoing life-story project with Les and with a hospice volunteer who does videos of people's life stories, who has now, sadly, gone to Los Angeles for two weeks.) Before the visit, Karen had struggled valiantly and successfully to stay off the anti-nausea drugs that undermine her ability to be present. She really wanted to be present for Michelle's and Bruce's visit. She limited but did not end her culinary meanderings which more often than not had consequences, sometimes major. But the primary reality is that she didn't take the drugs, helped by Alice Wilson's persistent trials of homeopathic remedies. Nausea not infrequently triggered whole-being suffering, making Karen really miserable -- but she stayed off the drugs. This is a truly unprecedented development because, as Karen has so often said, "I don't do pain." She really really really wanted to BE there with Michelle and Bruce. However, immediately after Michelle and Bruce left, Karen leapt at the feast that remained, doing the chew-and-spit-out form of eating that had sometimes worked (and sometimes not) in the past weeks. Within half an hour she was rapidly sliding into misery. Soon we discovered she had a blocked stomach tube. I worked on it for hours, all the way past midnight, taking the external connections apart and studying them with a flashlight, during which time I saw what looked like a caraway seed and then two tomato seeds lodged at a juncture where the flow-space narrowed. By squeezing that point of the rubber tube to bounce the seeds around, I managed to get the caraway seed through (since it has a narrow dimension) and let various other particles flow past the tomato seeds until the tube contents were clear liquid that could flow easily without intervention (although the tomato seeds haven't yet passed through). I then managed, with unexpected difficulty, to reassemble the whole messy system in a way that would hold together, and went to bed. Karen watched the whole thing. Phenomena that I'd tried to explain before suddenly became crystal clear to her. She realized that even chewing and spitting out complex foods could result in some otherwise puny particle (like a tomato seed hidden in a sandwich) unexpectedly jamming up her tube, generating another era of nausea and indigestion. As she told a nurse later, "I got religion about sticking with pureed foods and liquids." Unfortunately, her nausea and GERD persist. Her system seems increasingly delicate. On the advice of the hospice nurse, she yesterday tried a clear liquid diet to settle her system down. But we couldn't find a juice or broth or soda or anything else that she could tolerate. She then returned to a mix of mango juice and yogurt that was OK yesterday, but it didn't seem to work today. This morning she is drinking some hot lemon-honey water, which seems to be working OK so far. We aren't sure what the significance of this new sensitivity is or how to deal with it, but are concerned that it MAY indicate a spread of the cancer, creating more abdominal pressure and/or invading other digestive organs, so that it doesn't matter what she eats. Not a good development. Hopefully it is not even happening. One other approach we can now try: the hospice nurse authorized Karen to experiment with a dramatically reduced dose of Atavan, her main anti-nausea drug, to see if she can find a dose that handles the nausea without dulling her awareness. (That dulling includes impact on memory. Last Friday I took Karen on a wheelchair tour of the whole grounds, with many notable events, including a woman rushing out a door on a wheelchair saying "There should be no rules!!" as she zoomed passed us, and Karen poking at the keys of the dining room piano for about 5 minutes. The next day Karen remembered none of it, even though she hadn't taken Atavan for 24 hours. Same for a card which she'd greatly enjoyed when she opened it, but later didn't remember having seen it before.) So far her three experiments with .25 mg doses have been promising, significantly reducing nausea with only a few hours sleep triggered each time, and even that may be overcome when she is engaged with friends. Given the persistence of digestive problems and the prospect of the advancing cancer, Karen has turned to shamanic and energy healing approaches. Monday she had a long-distance healing (on phone) with chi gung practitioner in Minneapolis with whom she did healing calls back in January with some success. It seemed to have a significant impact on both her bowel movement (perhaps too much, since she suddenly had loose bowels she'd never experienced before, and so is now using diaper panties) and also the flows through her stomach tube. She has another session today. She is also exploring possibilities with a shaman in Mexico and a local spirit/energy healer, Linda Harken, whose connection to the Earth Karen respects a lot. (Karen very much welcomes any positive energy, prayers, cards or other forms of distance healing you may be comfortable sending her way...) Despite the amazing help of the staff here and the occasional invaluable assistance of local friends (like Tim Walker driving me on complex errand journeys that would take days by bus), I was newly exhausted until this morning. The difficulties of the last two days created occasional intense tension between Karen and me, and I had to work through a hardened heart several times. I've been with Karen 24 hours a day for five days. Luckily we hit a good place last night which still persists. I spent last week mostly at the co-op (including a household work party that was actually a relief: It is SO nice to create visible good effects in the world!). For much of the last ten days I've felt splattered in my various roles -- Karen-care, self-care, co-op, worldwork, etc. -- not handling any of them particularly well but really trying to attend to them all to some extent. I'm doing at least a bit of meditation and exercise (Tibetan rites and walking, usually on errands or when I miss a bus), but have gained 10 pounds in the last 2 months. At the co-op I joined my housemates helping one housemate move out, meeting a couple of new housemate prospects (one of whom evoked a delightful conversation on Buddhism), and playing a bizarre creative card game. I compiled a mid-year financial report and weeded the strawberry patch (talk about different tasks!!). In my work world I had a lively meeting with three Eugene city staff about ways to engage the public and stakeholders to share the challenges of governance, community maintenance, and addressing crises at minimal cost. And I've been sending (and encouraging others to send) healing energy to my friend and colleague Roland Allen who had a renewed crisis after recovering from his bleeding emergency during heart surgery; he once again seems to be in recovery. One of the most rewarding (and intense!!) things Karen and I are doing is reading Ken Wilber's GRACE AND GRIT about his soulmate's cancer journey. We've just started, but it is definitely feeding our souls. We identify just enough with these two remarkable people to delight in the good parts and be riveted by the emerging crisis in their lives. I wheeled Karen onto a grassy hilltop in yesterday's warm afternoon to do our reading. Karen got to lie in the grass and I got some good exercise. The journey continues. More soon... Coheartedly, Tom