Dear Friends and Family

John's illness refuses to follow any rules or to progress in a linear fashion. I suppose one should expect such behavior, it being John's after all.

Yesterday I wrote:

John's condition continues to deteriorate. He sleeps much of the time and takes increasingly strong pain meds. I got a hospice book describing the signs of impending death, hoping to gain some understanding of where we are. It looks to me like John's condition fits into the category of people who will live 2-4 weeks. On the other hand, his liver function has completely recovered, and he has begun taking chemo treatments again. While I prepare myself and my family for John's impending death, I do not rule out the possibility that the chemo will postpone things again for a while.

Today, I might write:

John's color and energy levels seem to have improved, and he is eating more. Everyone around here had the intuition that he didn't have much time left. Today, nobody is quite so sure.

John saw the hospice book, found himself in it, and rebelled. He's really pushing himself to eat and to take walks. I called him on this a couple of days ago, emphasizing that such a force-of-will, live-at-all-costs approach was subtly distancing him from his life. There was some loss of authenticity in it. I made him cry several times during the conversation, and wondered if I had gone too far. However, he seems to have found a way to keep pushing himself without so much denial-driven fervor.

I got the hospice book in the first place, hoping that I could predict something, know something, plan something. I get tired of planning everything with three contingencies, John dead, John terribly sick, and John well enough to do things. On the other hand, I'm mostly just scared to be in this unfamiliar territory. I'm afraid I won't be prepared, won't know what to do. It makes me want to know things, plan things. Of course, that particular strategy does not really work. John just laughed at me for even wanting such a thing. "...As if it would really do you any good, though it is nice to feel in control!" he says, "I'll just live until I can't and then I'll stop in any case, no matter what it says in the book." So, I work on letting go on so many levels, and he puts these gargantuan efforts into sweeping the floor or reading to a kid. At this point, his efforting gains him less and less.

He has gotten to the point where he needs more help than I can provide for him (given the 3 kids and the job). He has asked that people be brought in to attend him. As it stands, the casual visitors all call me to see if John is free, and they don't come if I don't return their call (which is usually when I need them most). So, we have set up a system.

Process for volunteering to attend John and what to expect:

These visitors would serve two functions: 1) company, 2) a person to call out to if he needs something. Persons answering this call could expect to spend a couple of hours sitting with John, getting him things that he needs, perhaps talking, rubbing his back or feet, meditating with him, or just meditating, praying or reading while he sleeps. Yesterday, three people came. The first, took him on an outing. The second, rubbed his back, made jokes about suffering and death, got him his medications, and convinced him to ask for more help. The third played the guitar, talked and drank tea. People come with their own personalities and their own relationship to John.

From now on, visitors should contact Jeannette Berkovitz at 805-415-1432 (cell) or 805-640-1863 or jeanette@mac.com to set a time between 8 and 8 any day.

Please give her your cell phone number, and expect that we could cancel at the last minute, or even stand you up. (Emergencies are a regular part of life with this sort of illness.) Please don't come if you don't enjoy John's company, and don't come all wiggy. Emotion is fine and called for, but anxiety lends the wrong atmosphere. Expect the household to be very loud and chaotic at times. One of your jobs may be gate keeper to protect a quiet space for John. Mostly, he is afraid that he will be in pain and there will be nobody to help him. You may sit there the whole time with little interaction and will still have made a great contribution to his feeling of well-being.

Thanks for being there.

Love,
Martha