Friday, November 27, 2009

November 27th, 2009:

I am writing this posting much sooner than I would have wished to. The simple fact is that my health is declining much faster than I expected. I am moving into all the expected signs of dying. I have lost my appetite. I have little or no taste for food. I could elaborate on each of these symptoms but why? What I do want to do every day is sleep. Lots of sleep. And then when I wake up, I sleep some more. After a lifetime of spirited living with all of you, it is my time to go. I can't say that I am turning my face to the wall, but I am now finding myself unable to carry on the correspondence. I want to just be with me. That is what I can do now. With some of you I still have appointments, and I shall keep them. Phone calls, yes.

What I can no longer do is keep the blog alive; others will do that. Eileen Lemus will be responsible for the medical information about me. Gaetano will let you know what is transpiring with my physical self. And Wendy will let you know about my all over emotional self. These people will also be sitting at my bedside during my final hours when ever they may start to happen.

It's a big concern that people not start flooding Maitri with questions. To that that end, I have set up a Telephone Tree so that you can get updates regularly from Eileen, Gaetano and Wendy and others that will keep you posted on my health. What I can't do is answer letters, emails and other spontaneous catch-ups about how much we care for each other. Yes we do. I know that and so do you. It's been a lovely life together. Information about my continued progress will be well communicated to you.

I'm sure that you understand that it is my time to just BE. I've talked about this for several weeks now. And now it's happening. For people with air fare tickets, I'll do my best to be alive when you arrive. Thank you, all of you for your wonderful love and support. Yes, indeed, I love you!


Wednesday, November 25, 2009

November 25th, 2009:

For the past several days, I have been needing a huge amount of sleep, especially in the morning. I wake up in the morning, have breakfast, read the paper, and fall into deep sleep. At least until noon. Then, I start to emerge from my coma, dizzy and confused.

In this time, I have been conversing with my tumor to some remarkable effect. I've spoken before about how our conversation has been thin to nonexistent. There's been a change recently, where the voice is no longer a voice, it's more like a knowing, an awareness in my body. I started out demonizing this growing mass of tissue as having no nerves, no awareness, no cognition, rather just a selfish, mindless set of needs. Then, the tumor told me that it was fully aware that it would die when I died. It told me that it had intention and mission.

In a way that I'd never imagined, the tumor has a very firm grip on my identity, my ability to create and is in synch with my capacity to express myself. The tumor knows me very, very well. In fact, the tumor came into existence at this time in my life when I could express most fully my thoughts about death and dying after working in this field for the last thirty years. What a shock! It's one of the reasons that the tumor is not associated with a specific organ or tissue mass. It may have metastasized to hasten my death, but it is not a rectal tumor, not a rectal tumor, not a prostrate tumor. It is a discrete sarcoma, rare and self-defined.

Everyone who has learned something from this blog has learned something from this tumor. This tumor has come to life to grow through me to push forth a knowledge about what I know and what I have learned from death and the capacity of people to grow together in love. That's the message of this blog. That's the purpose and the message of this tumor. The knowledge of my learnings, the knowledge of this blog and the knowledge of my tumor are synonymous. Every time you remark on the gifts of this blog, please thank it. The blog is my friend, the tumor is my friend, I am your friend. Quite the dialog--no? It's like my conversation which started in disdainful silence has moved 180 degrees has grown into the richest friendship and joy. Amazing.

Sunday, November 22, 2009

November 22nd, 2009:

Often when I haven't posted anything for several days, it means that a lot is going on. Sometimes not. This time, a lot is going on. Last Sunday, I was shaving at the sink in my room and apparently the tumor had grown so large that I heard a loud SNAP, followed by small pain. My tumor had broken through thigh muscles, tendons, cartilage. Since then, I've had much reduced mobility. My most frequent place is on top of my bed with a pillow support under my right leg. I use the walker to get to the computer across the room. Wheeling in a wheel chair gets my to lunch and dinner. I have now taken to breakfast in bed; it's just easier that way as I'm first waking up.

Curiously, this has furthered a long-range goal of mine which is to have fewer visitors. Along with less mobility, I have also had less energy. I think I've claimed that I have a vision for the end of my life where I spend many hours on the bed, casting about in my mind for places to go, places to land. I want to just BE.

This new solitude will be the opposite of how I've lived most of my life. From a very young age as the healer in my family, I learned to say, "I'll be supportive and protective of you and then you'll love me." Of course, no one ever signed this contract or knew that it existed, but it has served me for six decades. Now, I am drafting a different contract. I've been describing it as moving the battleship 180 degrees; takes time; doesn't happen on a dime. A friend described it as: I am in my bedroom, and I am packing for a very long journey. I have some clothes on the bed and all my suitcases are opened to be packed. I know where all my clothes are in their closets and where other clothes are in chests of drawers. I am the only one who can pack effectively. This isn't about asking for help to get ready for the journey.

It also means that all of us, me and my friends will undergo a deep change of how we experience each other. One person said: " Doesn't matter to me. I have deeply experienced you. I am done. If I never see you again, I have full memories of what we were to each other and how we loved each other. Those are strong memories. More would be nice, but not necessary." There is no right way. Also, there is the vast amount of work and memory that many people are doing off the dying that I face. They are reliving their grandmother's death many years ago. They are reliving not being able to grieve. Many experiences of death are converging at this time, and there's nothing I can do about that other than acknowledge that yes it is all happening and some of it's mine and some of it's yours and it can all be very personal and intimate and unwanted and part of our growth as an extended friendship.

What will it feel like to lie on my bed and roam my mind? I'm curious. Very curious. As I find out, I'll let you know. Certainly it's part of the unique awareness that's shaping my end of life. It's so interesting to find the unexpected shift into new ways of being at the end of my life. But, here we are.

Monday, November 16, 2009

November 16th, 2009:

It's been two days of remarkable synergy and decisions. Sunday, November 15th was my 63rd birthday, and I awoke at 5:49 in the morning with memories of being born some 63 years and 12 minutes ago. As some of you may know, I recalled what it was like to be born in a workshop a few years ago. Memories included, in this order:

1) I felt my body's shape for the first time because the different temperature gave me the sensations of having a head, trunk, limbs which I had not felt in utero. As my body formed in my head like a hologram...

2) I remembered how physical it was to be born. I had forgotten the strong flesh sensations of moving my body through my Mom's tissue and the intense work we did right next to each other to exit me from the womb.

3) Once completely out and body-focused, I realized that I had arrived. This birth had been a major goal for a long time, and my mind said, "I got here. This is how you get here, and I got here. Yes, I got here."

Having thought these thoughts, I headed into my first nap.

During the day of my birthday, I spent hours visiting with friends. Beth Pielert and I finalized the CD which will be shown on the day of my memorial service. Gaetano and Wendy and I did a slow walk through the agenda for the same memorial service. Afterward, I rested and felt content.

It was a different story walking into breakfast this morning. As I was moving through the living room here at Maitri a strong interior voice said: "Don't write the book about bringing communal groups together. You don't have time and you don't have the background. If you let this go, you will have more time to die easily and fully. Right now, you are in struggle about sleeping too much and not having enough time to complete this work. Give it up. Let it go." I have to say, that really upset because I have put so much hope and trust in the book as a creative effort. Also, my trip into the dining room was really difficult so I was really aware of how much my capacity to walk has diminished in the past few days. Even diminished from my birthday until today.

When my Social Worker Tova Green came for her visit at 11 this morning, I felt weepy and lost. It felt like I had no center, no creative reason for being. So we talked. I told her how much I wanted to express my knowledge of how communal groups could form energy centers that heightened intimacy and love between the terminally ill and their friends. She asked me what would be the consequences of letting go of this project. I told her that it would be a loss, a sadness that my knowing would not be shared more widely. Back and forth we went, examining the loss.

When it was almost time for Tova to leave, she handed me a book that she had promised to bring to me. The book was titled, Share the Care. As I scanned through the book I realized, this is it!! This is the book I had hoped to write. Only, it's already been written by people who really know what they are talking about. The part that I know the best are about setting up and creating a blog and the creation of a memorial CD. Those are rather esoteric chapters that I have already done myself for all of you. The parts I don't know so well about assembling small groups of terminally ill patients who determine what they want to accomplish and give each other support to complete, well, that's what's in the book that's already been written. I huge wave of relief poured through me from the top of my head through my toes.

Tova wondered what that felt like and I replied, "Relief. Huge relief. Now I can get out of the struggle I've felt for days about not being able to get more done on this effort. Now I can get on with my most important task which is to be released toward dying. That's what I want to be doing. I want to be dying without struggle. Dying with ease. Dying with as little as possible that's in my way." It's been a day where I feel like I've released myself back into quality of life in a major way. I am so grateful, so glad to be back where I can move forward to do my deepest work.

Friday, November 13, 2009

November 13th, 2009:

Three interesting moments in my journey forward that appeared in the last few days.

The first is that I have started to chew gum to counteract the dryness of mouth that comes from using a lot of opiates. Chewing gum stimulates the saliva glands in the mouth so that a moist, even over-lubricated oral cavity results. But, back when I was pre-adolescent, say 8 to 10 years old, one of the most dismissive, even funny expression that we--my pals and I--could ascribe to someone was that they were a drooling fool. This meant that they were old, goofy, out-of-it. They were uncoordinated and no longer held together. Falling apart, and well, drooling. So I've been noticing that my gum chewing has placed me into the category of becoming a drooling fool. I salivate a lot and as the stream of drool starts to creep from my mouth, I can hear my voice from the past say: Drooling Fool, Drooling Fool. Yep, that's me these days.

Over the past days, I've settled into the structure of the book I'd like to create. A book much more focused on how other people can creatively approach gathering together their friends into a circle of support rather than just talk about me. So, first section will focus on the centuries-long avoidance that other people have felt about the dying process. Second section will be about my history as an end-of-life caregiver and the steps I've taken to reach out to other people to bring them closer to me and my illness.

Third section will talk about how large hospitals and clinics can form support groups where people who have accepted their end-of-life status can join together to form individual planning sessions. In these planning sessions, the terminally ill can reach into themselves for finding the new ways to reach out to their loved ones. Reach out and find ways to create intimate circles of caring. Initially, the book was all about me. Now, the book is mostly about others. And, having made this contribution, I will put it out there on the current of trust and send it on its way. I can't create a new movement, but I can help with the call for better communication between the living and the dying. It's significant and humbling to write a book that's immediately handed over to someone else. It's an exercise in trust to write and hand this over to someone else.

Finally, after breakfast on Tuesday, I came back to my room and started reading the morning paper until a nap took over. In the nap, I don't remember the person, I think they were Asian, young, friendly and they held their arm out to me. I held my arm out to them also. In fact, when I awoke, my arm was in mid-air, reaching toward them. I had heard of this gesture from one dimension to another, but I had never experienced physically holding my arm out toward someone who wasn't in the room. It startled me, and I thought, "OK, it's starting to happen. I'm starting to reach toward the next other side."

Drooling, getting myself out of the way so my book has more inclusion and more resonance and getting ready to make early contact with hands reaching out for me. Little steps forward, a day at a time.

Wednesday, November 11, 2009

November 11th, 2009:

It's been 14 some months since I've learned about the existence of my sarcoma via the metastases. In that time, I've had very, very brief direct contact with my tumor. I have often described it as an estranged roommate who I hardly ever see; don't know what it eats from the fridge; hear it in it's room although not as direct communication. That's a lot of avoidance considering that it will be the cause of my death.

Now, that avoidance is shifting, and I want to be in direct contact. Since the reason for no contact is that there are powerful parts of my psyche that keep me walled off from being in touch, I am working my way back through the parts of myself that guard me from too much painful information. I have been talking with those parts of myself to get their permission to communicate. What a fascinating process.

From a very young age, there were parts of myself that protected me from trauma. And there was plenty of trauma. Starting with the death of my older sister when I was three months old, very strong protective parts of me stepped in to comfort me. The role of the protector included teaching me how to turn away from getting the help I needed from my parents. I'm sure it never occurred to my Mom and Dad that I was acutely grieving the death of my older sister. I was only three months old! Nevertheless, I was very much aware of my older sister from inside the womb and was anticipating meeting her after birth. I had known her through many lifetimes and was happily anticipating another life with her. So my protector helped me grieve and also taught me how to turn away. Point being, I learned a lot about not speaking out about my feelings.

Now with a cancer that is surely not here by accident, I react by turning away again. All those feelings of grief go somewhere on the inside, but not where I can hear them. The re-wiring I want to learn is about working with my protector to hear those voices on the inside. Hear the voice of the tumor. Hear the voice of the protector. Hear the voices of the other aspects of my personality that surely have been talking a lot for sometime now, but talking outside of my hearing range. It's not as if my body doesn't know there's a tumor inside me. Far from it.

I was talking with my friend Bob Gordon about this on Tuesday evening. I had gotten to the part where I imagined that the tumor would reveal some profoundly benevolent intentions toward me. I suggested that the tumor was in alliance with me to produce important gratitude toward both life and death in rapport with each other. Intentions that have pushed me into a surge of creativity and willingness to express myself at this time in my life. What's it like to die with some consciousness? How do I feel about giving my things away? About being open with my friends about leaving my life? At that point Bob said, "What is sounds like is that you are wanting to integrate your cancer into your soul." Bingo, Bob! What a gift that phrase was to me. So we'll see if that's something I can accomplish in the time remaining to me. It's an important task for my self development, and I am deeply hopeful that I'll be able to re-balance my psyche enough that much of the early coping mechanisms are unlearned and a wider embrace of my reality and my world will be open for me. Yes, I do.

Sunday, November 8, 2009

October 8th, 2009:

After my big sleep during the middle to end of this week, I thought that would be enough event. But no. Apparently, while I was in deep drift, I did some major re-organizing of my book. The issue that I dealt with was how to best communicate my information to the readers. It became clear to me that there are not too many people out there who are going to want to script a summary of their life, hire a film crew and put the results on a CD for their memorial service. Some people perhaps, but not a lot. More people may want to set up a blog and document their daily ups and downs.

Even if there are people who are excited about these forms of communication, my intention is not to write a book that focuses on how I did it, rather, I'd prefer to help people go into themselves and empower them to discover their own creativity. The result would be a book that highlights other people's creative outlets and has as a sub-theme my discoveries about how to reach out and form community at the end of life.

At the end of the last century when the fiber optics infrastructure was being laid out across the world, there was much talk about the "last mile technology." What this meant was the final reach from the big fiber bundles to the desktop PC. I felt like I had to address that issue with my book as well. If I write a book that's all about my interesting ideas and their execution to an audience that won't ever implement those ideas for themselves, well, the book will be tossed. As a reader, I want to be told something that pertains to me. Currently, I don't feel that the book has an encompassing reach that will be riveting to enough people. Again: some people, but not enough people.

So, what will be encompassing? And what I kept coming back to was the issue of tapping the individual's own creativity. Many people are willing to take a look within and make decisions about their commitments to helping build a community at the end of their lives. Many techniques are simple, some more complex. In addition, I think it's easier to make a commitment when you are already part of a support community. When I look at the history of civil rights movements that have changed American culture, there have been many successful models of consciousness raising groups of one form or another. Feminism pioneered the consciousness raising group as a method for creating a safe space for women to express who they felt they were. In this case, end-of-life support groups could empower each participant to face their fears and hopes. There would be issues to resolve. Would the groups be sex specific? Would some groups happily integrate men and women? What to do in those groups that have aggressive men? Who would facilitate the groups?

The latter answer dropped into institutions that are already up and running; namely hospitals and other large clinic settings that have big patient populations with clients who are terminally ill. Here in San Francisco, there are many support groups for terminally ill populations at UCSF and CPMC. There are yoga classes for terminally ill patients. There are cancer-specific support groups, for example, The Leukemia Support Group etc. All of these groups have traditionally stressed treatment. Even if we can't make you better, we can help you to feel better. The Organize your Friendship Network group would be no different. Other than now, it doesn't exist.

So while lying flat on my back at Maitri in the first month of November, I've happened on a largely unexplored civil rights movement that helps people gather their communities to them. Reason to gather in friends is to maximize love and that feeling you sometimes hear about from survivors who say, "Right at the end, there were such special moments. I've never felt such a closeness. It was really beautiful. I felt so much love." The phrases go on.

What an interesting and challenging opportunity has landed in my lap. It feels very satisfying that the book has shifted from a focus on me and what I've done to a larger, community-based movement that allows many people to "come out" about who they are and want to become. Interesting--no?

Friday, November 6, 2009

November 6th, 2009:

I've found out in the past couple of days that even people with terminal cancer can get sick. Seems obvious, but I still have a hard time of thinking of myself as sick. I think it's the high quality of life: active cognition; developing complex project plans including a new book; little pain, etc. What happened in the last two days was extreme exhaustion. I could read a book or newspaper for maybe fifteen, twenty minutes and then I would fall back, close my eyes and be off to dreamland for another twenty minutes or half an hour. And this was all I could do.

Alarmed, I also felt pain in the ribs at the bottom of my lower left ribcage. My first thought was that a new tumor had grown from by bone cancer. More alarming, I wondered if I was starting to develop pneumonia. When I blew the whistle, major events happened. First, I was given a course of antibiotics for possible bacterial infection in the lungs. Oxygen was brought into my room because my oxygen to blood conversion had some low numbers. Everyone triaged: Lisa, my primary care physician; Maitri medical staff; Hospice by the Bay. I was monitored every four or five hours. It was all done with concern and attention, but never panic or excessive management.

In the meantime, I cancelled many visits, my therapy appointment and anything that involved me being in conversation for more than fifteen minutes. My attention span was deeply curtailed because of my tiredness. I slept. Then I slept some more. More.

An anxiety that I surmounted was giving myself permission to be sick for a few days and let my body express its needs. If it needed to sleep, well, that's what I did. What was I anxious about? That I wouldn't get text written on my book. After decades of working in the corporate world, I am still deadline-driven. Turns out that taking a time out from writing has proven to be most useful. I have repositioned myself in a couple of valuable ways. A new posture about delivery of the material has become clearer to me. Also, I've taken a new direction about what to write next. All of this is part of the trust that I am still learning. When I do what my body wants, all parts of me are furthered. Amazing--no?

More to the point, I have gotten excellent rest. I feel much more intact and clear rather than spacey and exhausted. Now, as I go into the weekend, it's with a feeling of ease that I didn't have on Thursday or the first half of Friday. I'll keep you posted about my going forward: that's what this blog can do.

Wednesday, November 4, 2009

November 4th, 2009:

There's a surprising amount of planning that precedes dying. Yes, there's the option to fall over the edge and leave the undone pieces to my unlucky friends who will get to wonder what I would have wanted. I'd rather look within and ask myself how I want to leave this world. It was that way with distributing my worldly goods. That turned into such a beautiful process with so many people, including myself, satisfied by the results. In the past few days, I've been walking through the steps that I'd like to take before and after my death.

First, I am identifying people who can take over the blog when I am no longer able to type or be lucid enough to express what I feel. There's a spiritual component, a physical portion and an emotional facet of me that I'd like to assign to separate individuals. They will have permissions to access the blog software and tell the reading community about each of these parts of myself. As they speak for me, they will answer all manner of questions about how I'm doing. There may be weeks or days of coma. During this period I'll have the comfort of drawing into myself, but there won't need to be waves of phone calls asking about what's happening. At this time, the telephone tree will move into activity as well. Branch callers will leave messages about my status. With these two sources of info, people close to San Francisco or around the world won't have to feel far away and isolated.

At some point, I will die and that notice will appear on the blog with context of how my passing transpired. In the hours before my death, I have asked that a limited number of people be in my room with me. It is their choice to join me or not. I know that I don't want a lot of people in the room, and that has nothing to do with my affection for all. I just want breathing room. For the three days after my death, it's a different story. One of the Buddhist traditions that I've always appreciated is allowing the body to lie on the bed for three days. During that time, people can come in and say goodbye. There will be four or five chairs in the bedroom. A schedule will help coordinate who shows up so there isn't a traffic jam followed by an empty lot.

Sitting at the bedside can be very healing. It's a time to say good bye and to say thank you. It can help with closure to see my dead body. There's a finality about a body whose soul has departed. Sometimes flowers are part of the goodbye, but not too many. Profound and unexpected feelings arise.

After three days, I will be taken for my cremation. The transformation from an intact body to a sack of ashes will occur. Again, blog entries will inform people not able to be here about the three days of sitting period and the cremation. Next step will be the announcement of the memorial service. Both blog and telephone tree will let people know about when the service will happen.

A big feature of the memorial service will be the CD that Beth Pielert and I have created so that I can be there with you. It's my last visit in your company. I talk about what I learned in this life; how I learned it; what the impact of this learning it meant for me. Initially, I had planned to hand out copies of the CD, but I am now investigating if I can post the material on the net and let everyone download it onto their machines at their will. Either way, the CD will be available for everyone.

Final posting on the blog will be stories of the scattering of my ashes. Currently, I know of four sites: Portland, San Francisco, Glen Ellen and rural New Mexico near Ghost Ranch. The blog will be closed and we will all move forward. This has been such an unexpected and full journey. Like all journeys it ends and it doesn't end. It will be the same this time as well.