Better and better, worse and worse...

2010 June 03 - 12

Created by Tom 10 years ago
. Saturday, June 12, 2010 Dear friends, I don't even know where to begin. I haven't known for days, which is only one of the reasons I haven't written. Earlier, it felt like Karen might be steadily improving, and I figured the more "ordinary" life became, the less interested you would be in reading about it. (No one signed onto this list expecting to get a newsletter about our ongoing lives, and I didn't think that's what I was doing in writing these updates.) And then there's the fact that many days (like today and yesterday) I've not had enough sleep to think clearly. And then there were my efforts to get back into my own life, and what happened then... It has been ten days since the last update. As I write this, Karen is really miserable, curled up in her bed covered with many blankets. It is a scene repeated numerous times in the last week. These are interspersed with times when she is happily (even ecstatically) engaged in thinking, writing, planning, talking animatedly with friends or nursing home staff. To paraphrase a minorly famous motto of mine: Things are getting better and better and worse and worse, one after the other, faster and faster. A central issue is food. Karen was sticking to pourable pureed food because normal food could clog her stomach tube or her partial bowel blockage. Lately, as the bowel blockage has given the appearance of ameliorating (she's still having bowel movements, though small), she's become more adventurous. When Karen commented to our friend Sally Nakamura that she would love a Thanksgiving dinner, Sally went out and cooked it for us. Karen ate it, spitting most of each mouthful out after a rapturous chew. And recently she changed her official diet at the nursing home from pourable purees to normal food (with a side of pureed mashed potatoes just in case) and has even begun swallowing much of what she eats, exasperated with the incomplete satisfaction of spitting it out. Unfortunately, there are usually consequences to that and she ends up feeling miserable, like today. Living in the present as she does, the prior misery often evaporates from her consciousness when another attractive meal presents itself to her starved sensibilities, and the cycle begins again, often with me helping her empty her jammed stomach tube, reminding her to take her homeopathic remedy, and helping her sort out the next round of drugs to deal with her rising discomfort. But it finally got to me. As much as I commiserate with her frustrations over her diet, I told her today that she can eat what she wants, but I do not feel bound to empathize with her suffering and save her continually from what I see as very predictable and self-generated problems. Not fun for either of us. We now know that Karen's cancer is not in total remission. Our naturopath Alice Wilson examined Karen and found that the tumor is still very much present, although we don't know if it is growing or shrinking or staying the same. Another exam a month from now may be able to tell. Karen feels bathed in caring, love, and prayers. She has been deeply moved by many of the cards and messages people have sent her -- often from unexpected sources. Perhaps most impressive is how she usually comes to life when she latches on to a visitor or caller, extracting their stories and launching into her own. She was enthralled recently when our acupuncturist friend Michael Karabach visited her with a slide show about the trip he and his wife Star Rhodes took last month to Ireland and Scotland. Karen has Irish roots and the earth-spirit sites Michael shared invoked in her a strong, unprecedented desire to go there. She was also very taken with a responsible tourism guide to Cambodia that our friend Sally had just had published, as well as gifts from Sally of a scarf blessed by the Dalai Lama and a necklace blessed by Ammaji, "the hugging saint". Karen often shares with visitors and callers stories of her family and how the struggles and hopes of the world are reflected in the struggles, caring, and action of her very diverse family's life and history. All this is coming together in a very powerful way for her. Many of her visitors and callers end up talking with her for hours, sometimes way longer than they thought they would, for she has a powerful way of engaging them (think The Ancient Mariner or Scheherazade). She usually exhibits tremendous life energy in these interactions. When she is feeling good at the start, she sometimes feels tired by the time people leave or hang up. But when she is feeling bad at the start, she is often rejuvenated by the interaction. Her rapid changes sometimes perplex Alice Wilson who tries to identify homeopathic remedies that fit Karen's changing symptoms, often with remarkable, if temporary, success. (When Alice visits, she finds herself hanging out for much longer than she expected after a hard day's work healing other people -- but she keeps coming back, and we love her so.) I have been doing more cuddling with Karen in her bed, which is nice for both of us, although finding a comfortable position can be hard, due to the stomach tube, the narrowness of the bed, the upper bed angle (too shallow gives Karen GERD, to steep makes it hard for me to lie on my side), etc. Unfortunately, navigating the narrow space between her bed and the window a few days ago, I stepped on her stuffed Audubon crow (which caws when you squeeze it) and broke its vocal mechanism. Crows are Karen's power animal and have played a significant role in her life and cancer (most intriguingly alerting her to the office of our naturopathic oncologist, Pat Rozerra, several years ago). So I was even more devastated than Karen, fearing the symbolism of my act. Within 24 hours I'd located and purchased a second Audubon crow which, interestingly enough, caws six times when you squeeze him, not just three times like her now silent crow did. So they hang out together a lot, Karen and the two crows -- a happy ending. More than anything, I am feeling disoriented by my recent efforts at more balance. I find bouncing between my multiple lives -- Karen, work, self-care, co-op home, etc. -- to be jarring. But bounce I must, since this seems like a long-haul proposition. (One place I haven't bounced to is the East Coast to care for my 91 year old father, Jack, whom my brother Dick has been intensively caring for for many weeks recently, relieved in the last week by my daughter Jennifer.) I've dived into my co-op as we meet and discuss new housemate prospects and work on the finances and decisions involved in upgrading our old home's heating and electric systems. In my worldwork I try to engage only where a small intervention may have disproportionately major impact. I am happy to see that a few conversations I had with Robert Franklin, a dissident leader in the Coffee Party movement -- formed originally as a progressive response to the Tea Party movement -- has resulted in the Coffee Party engaging the advice of leaders in the Dialogue and Deliberation movement to generate more inclusive, less biased public conversations. I have been delighted that a few messages from me with questions and suggestions for the movement have been tremendously appreciated and used by them. And I am very pleased with the response from dialogue activists in Canada to my recent idea that MACLEAN'S magazine (Canada's TIME magazine) do a 20th anniversary re-run of their magnificent 1991 "People's Verdict" national dialogue issue next year (see -- and also responses from Eugene City staff to my proposal that Eugene become a national leader in developing ways to deal with increasing needs and crises and shrinking resources, using public participation, citizen deliberation, and stakeholder engagement. I am a little concerned that these last two projects may snowball in ways that demand more attention than I can give while caring for Karen. There is so much else I could write (including the routine heart operation my close friend and colleague Roland Allen just had, which went almost fatally awry yesterday... and the beautiful mallard duck that wandered in the grass by the nursing home while I wheeled an awed Karen after it... and the wonderful dinners I had at friends' houses (something I've hardly ever done before)... and...), but I should get this sent off before something else distracts me. And, heaven knows, you don't need more to read... Thanking you so much for your good wishes and support, in all the ways all of you offer it. Blessings on your journeys and the Great Story we share. Coheartedly, Tom