A SUMMARY of the subsequent entries in this Journal

2010 August - September

Created by Tom 10 years ago
. NOTE: FOR THE HISTORY OF KAREN'S LIFE WITH ME FROM JUNE 1986 UNTIL APRIL 2010 -- INCLUDING HER 3 YRS OF CANCER -- READ THE 1986 ENTRY AT THE END OF THE LIST OF ENTRIES TO THE LEFT. This entry here below covers April 8, 2010 through Karen's death on June 29, 2010. On April 8, 2010, Karen developed serious nausea that we soon discovered came from a cancer-caused bowel blockage. At that point she was declared terminally ill by her chemo oncologist who told us further chemo would not help her. An old friend from the Bay Area came to support us as Karen went into the hospital and had a stomach tube installed so she could empty her stomach when she got nausea or indigestion (since food couldn't go through the blockage). From the hospital we went into hospice care at home in her apartment. Three days later -- on Earth Day, Thursday, April 22, the day the Deepwater Horizon rig sank -- she took advantage of Oregon's "death with dignity" drugs. She threw up most of them almost immediately and went into a three-day coma. Another Bay Area friend and I cared for her, with difficulty, expecting she would die. But she didn't, becoming the second person in the history of Oregon's physician assisted suicide program to not die. She emerged on Monday and during the day slowly regained her capacity to talk. The next day said she wanted to try the death-with-dignity drugs again. However, 20 minutes before beginning the runway into her second attempt she decided she didn't want to do it and went into the hospital with serious dehydration. After several days of intravenous hydration, she went to a very pleasant nursing home (private room with a view of trees) and entered the hospice program again, where she remained until she died near the end of July. When she was taken off IV back in April, her doctor expected her to die within a week or so. But she defied the odds. Although hospice care does not include any diagnostic tests or treatments except to provide comfort, all signs suggested that an opening had developed in her bowel blockage: Although very thin and weak, she was clearly staying hydrated and getting some nutrition. She got around her room with a walker and later with a wheelchair. She ate with gusto, first limited to purees that could pass through her stomach tube but then, with permission from the hospice doctor, "chewing and spitting" more satisfying meals. Much to the frustration of her caregivers, she often pushed the limits of what was advisable to eat. But there were some periods when she even had regular bowel movements. Sometimes she seemed in good enough shape that we even entertained the idea that her cancer might be in remission. But each time her symptoms came back. Drugs for her nausea, indigestion and pain often made her groggy and muddleheaded or even knocked her out. Sometimes she was totally out of it, and the next hour or day she would be remarkably lucid and energetic. For months -- until two days before she died, in fact -- it was very hard to predict what was going to happen next. With varying amounts of help from friends, I was able to give Karen pretty much 24/7 care. Often I rode the edge of burnout and twice had to leave for a few days. I went through some of the greatest confusions, challenges, and changes I've ever experienced. I was amazed and thoroughly grateful for the support of friends and the remarkable staff of the hospital, nursing home, and hospice as well as the volunteers who worked with hospice and the death with dignity program. More often than not, Karen glowed when she was awake, loving and befriending more than a dozen of these helpers and attracting admiring comments even from random passers-by. She died more loved and loving than she'd ever been in her already remarkable life. Financial note: All the mainstream expenses of Karen's cancer were covered by the Oregon Health Plan or Medicaid / Medicare (over the full period, probably in excess of $120K), since she is extremely poor. During the treatments before this final 4-month crisis, I paid for her alternative stuff (mostly naturopathic and Chinese herbs and homeopathic treatments plus related appointments) and then the death with dignity drugs. It has been a stretch, but family and friends have helped and we are blessed to live in a state with such services and support.