A Crisis Begins
2010 April 08 - 17
Created by Tom on 08/05/2010
Karen is in the hospital with a bowel blockage due to her cancer.
She called me on Thursday, April 8, saying she was feeling really really nauseous and had bad GERD (gastroesophageal reflux disease, a.k.a. acid reflux, a.k.a. indigestion). We went to Urgent Care and they took an X-ray and gave her some meds for her symptoms. Over the weekend Anna Pendall, a good friend from the Bay Area, came up and was with us for the following week.
On Monday Karen had a previously scheduled CA125 (ovarian cancer blood marker) test and on Tuesday she had an MRI. Wednesday morning we went to an appointment with her oncologist who said that tests showed an imminent bowel blockage. He told her it was very important to start her next round of chemo on Friday. But Wednesday evening she felt extremely sick and we went to the Emergency Room at midnight, where she had another X-ray and threw up. The ER people verified a complete bowel blockage and by 5 am Thursday morning Karen had been admitted to the hospital, accompanied by Anna and me. The next morning we learned from Karen's oncologist that she was now considered terminal and would not be getting further chemo on Friday or, probably, ever. He fears the chemo will damage her too much when she doesn't have the ability to protect herself with nutrition.
She is not in pain, but has had nothing to eat or drink since she was admitted. Mostly she feels fine although she is weak from no nutrition. She's just been on IV (intravenous) saline and on occasional drug to help move her bowels (with iffy success which is actually spectacular because she hadn't had a bowel movement in ten days before Weds and only rarely for a week or two before that).
She will be going on hospice when we leave the hospital (it is a great hospital with really amazing nurses and doctors and a bed in her private room for me to sleep in, so I haven't left her since she was admitted). She'll be at home in her apartment but with a lot of further support, including a hospital bed provided by hospice.
Les Rollins, another good Bay Area friend from Peace March days, came up yesterday for a few weeks to support us (accompanied for a few days by his partner Ted)., and Anna will be leaving soon. The four of us have scrambled to arrange for the death-with-dignity drugs (Karen had it mostly worked out with one doctor last year, but that doctor is in Africa on a medical mission and unavailable, which almost meant starting over again: the law requires all sorts of delays, for obvious reasons, but it was not desirable or appropriate in Karen's case right now). She wants to die while she is feeling happy and well and not wait until she is miserable or drugged up. The chance that she will be miserable or drugged up in the near future is extremely high, if she persists.
How all this will actually play out is still very much unknown, although I am expecting her to decide to go (die) in the next week or two max. She is having a "gastric tube" installed tomorrow to allow her to eat liquid foods and then drain her stomach whenever she gets nauseous or GERDy. The level of nutrition available from that is very minimal, but it allows her the enjoyment of taste until she dies, and avoids the otherwise inevitable build-up of gastric juices (which happens whether or not we eat), which would have to otherwise be regurgitated. So it is a major comfort enhancer.
With a lot of help from Anna and Les and hospital staff we got wills and living wills and other legal documents witnessed and notarized today. I will be handling Karen's estate (such as it is). I hope to hear from family what they would be interested in having, they being among the most obvious people to receive anything they might consider meaningful. Karen has made no specifications of any particular things for any particular people.
Karen is in a good place regarding dying. In fact one of the nurses here (who we've gotten to know and love very much) was so impressed and moved by Karen's attitude that she started crying, took Karen's hand, and said "If only other patients and their families looked at death the way you do, it would save them so much suffering!" A number of the staff really enjoy Karen's quirky, intelligent aliveness and caring connectivity; it has been a joy to watch.
Karen gets overwhelmed when she tries to think of sharing the news of her dying with anyone but her four closest friends, although a few people close to me also know about it through me. I felt I needed to include her immediate family in all this and am not clearing this email with Karen (who is asleep in the guest bed while I write this in her hospital bed!). The whole experience is so often like an overwhelming tornado of decisions and challenges that I don't want to leave writing this until later, since I don't know what will happen (and take up time) later.
I feel very blessed by my connection with you and with this remarkably alive person we know so well, who is actively creating the end of her story on this earth.