Healthy Geo

2010-04-29T19:30:00.001-07:00

George's Farewell

Thank you for all who attended George's memorial and celebration of his life. You made it a special time of which George would have been proud. After George's video, people were invited to the buffet to share their stories of George with people they did not know.

George's farewell video is now available for you. I would like to discuss some technical details and research to make this process as easy as possible. The format of George's video is MP4 which is relatively new and is not supported by Microsoft Media Center, RealPlayer and some other popular media players as yet. Google Chrome does provide playback and download. Also, there is free software such as AVS Media Player which downloads rather cleanly and provides excellent playback. Below are options for you.

Download George's farewell video directly to your computer. Click on the save option when the dialogue box opens:

Download Video
If you have trouble downloading the video, set up the Google Chrome browseron your computer, come back to this blog, select download video again. Right click on the image as it's playing and use the "save as" feature.

Download free AVS Media Player software:

Download AVS Media Player
When you start up AVS, right click on the word "title" on the little player, select source, then open video file and browse for George's video that you downloaded, select it, and select open.

View George's farewell online at Vimeo.com:

View Online
You can download the video from Vimeo but you have to become a member and you may have problems downloading.

2010-01-06T12:49:00.000-08:00

George Stevens
San Francisco Chronical
January 10, 2010

George was born on November 15, 1946 in Berkeley and died December 3, 2009 in San Francisco

He died at his beloved Maitri where he has volunteered since 1988. He is grieved by a community as diverse and colorful as he and we thank him for his generosity and love.

George was called to action from the beginning of the AIDS epidemic in 1981. He joined the Zen Hospice Project in its early stages which became Maitri Hospice. He was an integral member of the institution's growth and evolution from the beginning He showed up. He never left. He leaves us with many gifts -- the gift of Maitri, which he helped shape and protect. And the gift of modeling compassionate friendship - from the inside out.

As he began to fight his own battle with a rare sarcoma he made the illness into a communal experience sharing his medical news, acknowledging fear, anger, and regrets along with his profound love of beauty and culture through his blog

We would have wished for more time with George. We are grateful that he showed us what courage looks like and how to exemplify the gift of presence. In the end, he died peacefully, surrounded by love and compassion from friends near and far.

“I have trusted that my life was guided with purpose and intention. Fundamentally, I have felt well used in my life and San Francisco was the container for my work. Gratitude doesn't begin to describe how much I love and appreciate this City.”

The memorial for George Stevens will be held February 14, 2009 beginning at 3pm followed by a reception until 5pm at Congregation Sha'ar Zahav, 290 Dolores Street at 16th in San Francisco

Long Version

An enormous mind and spirit has departed. He died at his beloved Maitri where he has volunteered since 1988. He is grieved by a community as diverse and colorful as he and we thank him for his generosity and love.

He was called to action from the beginning of the AIDS epidemic in 1981. He showed up. He never left. He leaves us with many gifts--- the gift of Maitri, which he helped shape and protect. And the gift of modeling compassionate friendship - from the inside out.

Because George was always a writer we have enclosed his voice in his obituary. All of the enclosed excerpts are directly from his blog that he began writing upon his diagnosis in Sept. 2008.

“I have sat at the bed of many people during their terminal illnesses. I have sat with people as they died and continued to sit with their bodies for a time after their death. But I had never sat at my own bedside until the night of September 16th, 2008. That night, I realized that I would die. Not necessarily from my current sarcoma diagnosis, but that I would physically die. This was so difficult for me to grasp that I digressed into estate planning, and deciding who to gift with my rugs, my glass, my furniture. After an hour and a half, I had disposed of my worldly goods. 'What now,' I wondered. Then, finally, I burst into tears.”

“My destiny led me to learn bedside care from Eileen Lemus who had started a small, hospice program at San Francisco General Hospital. I worked with poor men who had various cancers, and then, in mid-1982, I met Michael Maletta who was laying in a hospital room at SF General with a complex list of debilitating illnesses that seemed likely to kill him in his late 30’s. AIDS had arrived in San Francisco.”

He then joined the Zen Hospice Project in its early stages and joined Issan Dorsey at Maitri Hospice in the Hartford Street Zen Center.

“I did bedside care at Maitri starting in 1988 when there was just one resident. I've been part of the institution's growth and evolution from the beginning. To say that I love the place is an understatement. I am very proud of the quality of care that has been provided there over the years, but particularly since the move to the current location at 401 Duboce St. I volunteered as an emotional support caregiver until 1995, then I took a year off from directly visiting with residents. Instead, I took care of the garden.

In 1996, I joined the board as a member with a background in residential care. I've been on the board ever since, serving with the architectural planning committee as we developed the layout for the new Maitri. I've chaired the program committee, and been vice president and secretary at various times. In the past five years, I've delivered a pre-history of Maitri talk that I deliver to incoming groups of volunteers.

In that presentation, I gather far-flung influences--the discovery of penicillin, the American teachings of Suzuki Roshi, the civil rights movement, gay rights, feminism, hippie values, the advent of the drug culture and the growth of the hospice movement--all of which have sourced Maitri as a unique and successful home for end-of-life care. Through our actions we leave the greatest impression of how we choose to live this life."

George chose to bring emotional support to the suffering and dying. He met the epidemic with strength and concern and fueled his time on this earth by bringing comfort and dignity for each person he met and cared for.

As he began to fight his own battle with a rare sarcoma he made the illness into a communal experience: sharing medical news and changes to his health, acknowledging fear, anger, and regrets along with his profound love of beauty and culture. He used his remaining time to make peace with all of his relations and to savor the irreplaceable qualities of life: delicious meals shared with wonderful friends and volunteer work at Maitri until he physically was not able.

“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.”

We would have wished for more time with George. We are so grateful that he showed us what courage looks like and how to exemplify the gift of presence. In the end, he died quickly, surrounded by love and compassion from friends near and far.
“From the moment that I connected that voice in the winter darkness with my destiny to move to San Francisco and become a caregiver, I have trusted that my life was guided with purpose and intention. That isn't to say that I haven't gotten lost since then or made mistakes or regretted some actions. But fundamentally, I have felt well used in my life and San Francisco was the container for my work. Gratitude doesn't begin to describe how much I love and appreciate this City.”

What was most important to George?

Relationships, his friends. To George being a good friend meant everything. The issues of justice, human rights, equality were his concerns. He was generous with his time as a friend and volunteer. He loved to write, he enjoyed his imagination, his inner life and journey’s before this life and into the next, astrology, reading and learning. His BLOG gave him tremendous connection and a place to share his thoughts about his journey through life.
He had an enormous love for beauty that was almost religious. Opera, and music of all kinds from symphonic to the Grateful Dead. Art,of all kinds; Food, from simple to sublime. Among his favorites: Boulette’s Larder and Kokari.

His parents moved to Portland when he was a baby. George graduated from Portland State University. Majored in English and literature. He taught English. He had a full and happy life in Portland, before moving down to SF in 1980.
His mother died last year. Her sense of style and beauty greatly influenced George. They shared a love of music, travel, food and art. His father has dementia and lives in a Portland nursing home and he is survived by his sister, Betsy who is married and has two children.

Resources:
Since 1987, Maitri has been providing hospice and 24-hour care to men and women living with AIDS. "Maitri," pronounced "MY-tree," is a Sanskrit word that means "compassionate friendship." In this 15-bed facility, skilled professionals and dedicated volunteers offer nursing and personal care as well as emotional and spiritual resources to help meet the special needs associated with HIV-related illness. This non-profit program in San Francisco is focused especially on those who might otherwise be without adequate resources or care.
For more information/ to volunteer please contact maitrisf.org 415-558- 3000

Written by Traci, photo by Gaetano

2009-12-18T16:47:00.000-08:00

December 18, 2009:

The memorial for George Stevens
will be held February 14, 2009.

The service will begin at 3pm
with a reception until 5pm at:

Congregation Sha'ar Zahav
290 Dolores Street at 16th
in San Francisco

Valet parking will be available
at no charge

2009-12-08T17:04:00.000-08:00

December 8, 2009:

Born Nov 15, 1946 -- Died Dec 3, 2009

2009-12-07T10:37:00.000-08:00

December 7, 2009:

We are going to have a memorial service for George in January or February. We will inform people via the phone tree.

If you have any questions please use George's email address which we will keep active until after the memorial service.

George has now been cremated and suffers no more. I will miss him dearly.

Gaetano

2009-12-06T13:19:00.000-08:00

December 6, 2009:

Today, George's body has been taken for cremation. Thank you for all the support you have given George over the last months of his life. His courage, wisdom and clarity inspired all of us. I am deeply grateful that George was in my life.

Gaetano

December 4, 2009, noon

2009-12-04T11:50:00.004-08:00

Beautiful, a soft smile on his face, George's body is at peace. Sunlight is streaming into the room.
A vast network of support and love surrounds him now as it did throughout his dying. His strong beliefs that his real journey has only started makes me smile.

Please feel welcome to come and sit.

Wendy

Gentle Breathe

2009-12-03T18:55:00.000-08:00

George died this night at 5:20, his last breathe was gentle. His wishes were honored and his spirit is bright. His body will remain at Maitri for three days.

Evening

2009-12-03T16:51:00.000-08:00

George continues to change and move toward his death, he is comfortable. Now comatose we are following his breaths with love and admiration.

From the bedside

2009-12-03T09:49:00.000-08:00

George is peaceful and has entered the dying process. He is not answering phone calls and is unconsious most of the time. He stopped eating on Monday. He is getting wonderful care and we are at the bedside night and day. Please do not drop by, this is George's wishes. Please do not call Maitri as they are busy with 14 people to care for.

We will let you know when he dies, his body will be here at Maitri for up to three days so that you can come by and sit. There will be six chairs available. Hold him in your heart as surely as he is holding you.

Warmly,
Eileen, Gaetano and Wendy

2009-11-27T18:55:00.000-08:00

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!

Geo.

2009-11-25T20:51:00.000-08:00

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.

2009-11-22T16:14:00.000-08:00

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.

2009-11-16T21:52:00.000-08:00

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.

2009-11-13T16:52:00.000-08:00

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.

2009-11-11T22:15:00.000-08:00

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.

2009-11-08T19:42:00.000-08:00

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?

2009-11-06T17:28:00.000-08:00

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.

2009-11-04T21:31:00.000-08:00

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.

2009-10-31T21:03:00.000-07:00

October 31, 2009:

During his visit on Thursday, my friend Geol told me about a rigorous therapy session where his creative self, referred to as The Dancer, reappeared actively in his psyche. Years ago, Geol was a very fine dancer, but time had passed and Geol ventured into arts administration. His creative self went and sat on the bench.

As we talked, I realized that I had lived through similar patterns. In the mid- 70's I took several months to draft and re-write a short novel--Flying Carpets--that I submitted over the transom to Knopf Inc. It was not published, but I experienced completing a written effort.

In the late 80's I completed a longer novel about the AIDS epidemic. This time, an agent shopped my book to publishers. However, I'd joined a writing group and had started deep re-writes. The agent and I agreed that we could not have two versions in existence: one copy in my computer on the West Coast and another copy moving around in NYC. Within a year, I had strayed from my updates and My Writer within me was back on the bench for almost 20 years.

Now My Writer has dusted himself off and is moving around. It should be noted that I've written a lot during the interim. Every work day. At work. My daily effort isn't fiction, but it is steady, clear communication. Sitting here at Maitri tonight, I realize that My Writer moved from fiction back to corporate-based technical writing and then into the autobiographical blog. After friends started to give good feedback about the blog, My Writer went to the keyboard and crafted the script for my Memorial Service CD. Confidence has been gathering and building without me knowing it.

Now, more challenging efforts are coming my way via the psyche express. The idea for A Guide to Our Dying presented itself last Saturday, and already substantial progress has been made. I have always cherished My Writer. I have often abandoned My Writer. There is such a close rapport between My Writer and my self esteem, my love for myself, my belief in myself....Well, I could go on but I think you get my drift. Suffice it to say that I am very grateful My Writer has returned. I like him, and I love him. He has always delighted me with his wit and search for meaning. Also, I have often projected my expectations for myself onto him. And when I'm disappointed, I blame him. Not very nice behavior on my part, so it's a good thing that he's tenacious and has found ways to express his talents. Welcome back, my creative self.

2009-10-30T22:17:00.000-07:00

October 30th, 2009:

In order to get used to the personal time that I've scheduled for two hours each day in the month of November, I started setting aside an hour during the remaining days of October. Last Saturday I lay on my bed for an hour. Some fifteen minutes into that time of rest and no thoughts I quietly heard this phrase: A Guide to Our Dying. When I asked, "What does this mean?" I heard that it was the working title for a book that was available to me, if I wanted to write it. "Tell me more," I said.

Over the next forty or so minutes, I felt a download of information about how people in various stages of end-of-life illnesses can manage their friendship communities. Many of the outreaches are things I've already done: blog, memorial CD, telephone trees, etc. Many of the ideas were not on my list of connective methods. At a certain point, the information suddenly stopped. I picked up a pad and pen and took notes. The next day, I built a file with chapter headings, generated a table of contents and started working on the Introduction as well as some chapter details. It was a LOT of fun to suddenly jump into book production.

A couple of nights ago deep into the darkness of 4:30 a.m., I suddenly realized that I might not have enough time to finish this new book. This thought of being cheated by a narcissistic tumor whose only agenda was to grow and diminish my health filled me with rage against the tumor. After over two months of co-habiting my body with this tumor and having no discernible conversation, I was suddenly FURIOUS that my effort might be taken from me. Stepping back a bit, this is basic bargaining, where I decide: "I'll create a worthwhile book, and I will be given the time to complete it." These contracts are made daily, and Elizabeth Kubler-Ross lists them as one of the five major phases in the dying process.

I realized that I might not only die sooner than I thought, but there would also be time needed to die. I won't be healthy right up to the end. I will need time to decline. As night ended and the day began, a series of visits helped to metabolize this fear and anger. Sabrina, the Maitri nurse gave me valuable pointers about the indicators toward dying. Lack of interest in the newspaper, eating, and other worldly connections. Well, I'm not there yet. My friend Geol visited and we talked about how we set up projects and move into completing them. Then I took the first yoga class of my stay at Maitri. Already, the day is swinging into widening directions. Then therapy with Susan in mid-afternoon.

By this time, I am more settled into my options. I can drop the project and not be disappointed by not completing it. I can move forward and work on chapters because the tasks give me pleasure. If I do move forward, I will remember that I have used a lifetime of doing to avoid the deeper feelings that have been churning through me for a very long time, feelings buried so deep that I did not acknowledge their existence. And probably other options as well. Point being, I have moved back to that freedom: I have options. I am not being cheated by death unless I hold that as my only alternative.

2009-10-27T21:21:00.000-07:00

October 27th, 2009:

Tonight was the monthly Maitri board meeting, and since I am still a board member, I offered to talk about what it's like to be a resident here. It's never happened that a board member has become a resident, so this was a unique opportunity to pass along the information.

First, I talked about how Maitri contracts with other provider agencies, especially Hospice by the Bay to retrieve services that we could otherwise never afford. Since it has a much larger number of clients, Maurice the pain management guru, Tove my social worker who helps manage my support system of friends, and Steven my spiritual counselor are all available to help me. I had no idea that this arrangement existed or that it would have such an impact to my care.

Once Maurice and I have made a decision about the direction for my pain management, these decisions are presented to my primary care physician and the medical staff at Maitri. Final agreements are made and I have a new regimen of care. All of this is possible by good case management; everyone knows what's going on and there's no overlap of services. Maitri staff order the new pharmaceuticals and give them to me right on time.

There's also a lot of cultural diversity issues that come up for review and resolution. When I ask for a glass of water, I'm likely to say, "When you have a minute, could I please have a glass of water, no ice, and there's no rush?" I noticed that many of the African American residents will say, "I want water." At first, I was really annoyed at what seemed to me a very blunt, even rude way of ordering the staff around. However, I didn't like having thoughts bouncing through my head about how impolite my neighbors seemed. When I unpacked both of our requests, we were both asking for water. So I asked one of the black residents about this and he said, "No offense. They just asking for a drink." I asked a staff person who said the same thing. As an American citizen, I feel a lot of commitment to cultural diversity. Through this experience, I got to change my mind, drop some prejudice, and reconnect to my neighbors. Good work for one day.

I also appreciate that neither staff nor residents have given me any wide berth for being a board member. In fact, I doubt that any residents know about my other role here, although I might be wrong. The staff treat me as a resident, and that's what I want to be as I live here. Because I've been cleaning out my apartment and my favorite position is to lie on my bed with my right leg propped up, I haven't spent as much time as I'd like with the other folks here. Solution? Invite people into my room for a visit. Still, in the past six weeks, I have consistently felt accepted, cared for and loved.

Finally, I put in a word for the superb volunteers, some of whom I've gotten to know and set aside time for to cultivate a relationship. After the meeting, I spoke with Tim our executive director who suggested that I do a similar presentation next month to offer any new insights into why this place runs well and has such a high degree of self-correcting behavior if something is off kilter.

2009-10-23T22:18:00.000-07:00

October 23, 2009:

With the apartment now in the hands of the property management agency, I have mucho free time. I've been filling, no, packing that time with visitors. This week I've had a few days with up to six guests and a couple of hour-plus phone calls. The connections with people are so rewarding, so full of content. Previously in my life, visits had a certain amount of verbal plastic peanuts. No longer. It's as if we get to significance very quickly and stay there through the duration.

However, as my calendar started to fill into the future, I felt a gathering dissatisfaction. I gave time to everyone as quickly as requested, but I did not give time to me. How long could I continue to see so many people with such enthusiasm? And why was I avoiding making time for myself? It became clear that one of my joys--visiting with others--might turn sour if I didn't add some balance to my life. I realized that I was yearning for alone time.

In talking with Steven Grafenstein this morning, he told me of civilizations where initiates to a new life stage--adulthood, marriage, death--would often go into the temple where they worshiped and create a sacred space. They would be alone, and they would invoke their god or goddess to reveal the intention of their next stage. What could they expect? In our culture, people go into the wilderness on a vision quest for this sort of information. Steven suggested that I was setting aside my time to create sacred space in my room at Maitri. In this sacred space there would be no time. There are no projects to do. There is just receptivity.

I've taken my November calendar and for every day, I've set aside two continuous hours when I can be in my room, unavailable to the outside. I will not be using the PC. I will not be reading. I may listen to music. I may be doing yoga stretches for some of the time. But the focus will be quiet time when I listen. Although it's true that I get a great deal of information from good conversation, the most important truth comes from within me when I am quiet. It's that still, small voice that is mentioned and honored across the centuries.

At the end of my life I expect to withdraw into myself and loose many of my communication functions: no seeing, no talk, no acute tactile awareness. Some say that smell is the last sense to ebb away. At that time, I will not return from my retreat. But prior to my final days, I hope to go within during my two hour daily sessions and then emerge intact and communicative. That's one of my most fervent hopes about moving into Maitri, that it would give me a safe space to retreat and return in a rhythm. As a way of easing into this place of contemplation, I'm going to set aside an hour in the next week to practice this in quietude. As always, I'll keep you posted about what happens. In many ways, this is the most exciting step I've taken since moving in here.

2009-10-20T22:00:00.000-07:00

October 20th, 2009:

Saying hello and saying goodbye. Now that there is little to no attention focused on my apartment, I move into the next completions. There is finalizing the handover of my property in Glen Ellen to my land partner. There is connecting to people that I know. The latter has several layers. Over the past few years, I've lost touch with several people that I don't want to miss saying goodbye to. Each of them has been a solid, giving presence in my life and it's important to me to connect with them prior to my death.

Last weekend, in a resting moment, I asked myself, "Who do I still have negative energy with? What clean-up do I need to do before I leave this life?" To my surprise, I only came up with two people that I felt conflict with at this point. And one of those people I've worked on quite a bit. I felt like I could make a list of issues that existed between us and then would verify that I'd resolved each of those issues. I'm writing an audit of my stuff. So far, the resolutions have neutralized each of the resentments. With the final person, I need to do some work. My plan is to develop a ritual where I can identify my anger, sense of betrayal, etc., lay that down and step back.

My goal is to leave this life with no lingering bitterness to a person or an institution. What a pleasure to have done all my work and depart with total cleanliness and gratitude. I feel like I'm very close to that now. Of course, this doesn't include all the petty carpings and exchanges of attitude that I've tossed at others. I'm talking about major, unresolved hatred and stand-off with key people in my life. To me, the biggest miracle will always be the work and happy ending I have been able to achieve with my Dad. I never expected to find joy or love in our relationship. Now, we both express our love for each other with great fullness and sincerity. Amazing! This doesn't mean that I don't have a queue of tasks in my next lives. But if I can exit this life with no karmic damage to myself or others, I would be very glad.

Also, the quality of my visits with people who I talk to over the phone or see in my room here at Maitri are very fine indeed. Often when I end a call or walk a friend to the door, I am full of wonder at what we've discussed, the depth of love that we've communicated. This is such a rich time in my life. Because these visits have such power and revelation, I find myself rejuvenated and inspired. Also, I want to have time to integrate our insights. What a wonderful rhythm: connection, pause, connection, pause.

2009-10-18T21:08:00.000-07:00

October 18, 2009:

So much is moving forward in this time: my apartment is poised to be completely emptied and the keys handed over; my tumor grows every day; I am changing in my daily patterns. In the past week, I've been staying in my room for breakfast; it's too painful to sit at the dining room table in the morning. By noon, I'm much more comfortable getting around so I have lunch in the dining room and also dinner. With the easing off of the apartment as my primary task, a new regimen has formed: I have visitors. Lots of visitors.

Staying alert and in the flow of my friends' lives has been one of my favorite ways to spend my time for several decades. This has only increased since I've moved into Maitri. Since there's a lot of shift in my health, it's good to talk about that with people who care. Also, it opens my life and my heart to know what's going on with people I care for. As you can imagine, I don't want to talk about my cancer and my declining mobility all the time. Hardly! Giving my health report catches me up to the immediate "now," and listening to the concerns, hopes, visions, etc. of people I love lifts me out of the possible loneliness of just recycling my own stuff.

New people have come into my life with my open house availability. Each person is stimulating and different. There's Richard Hardy, one of the most enduring volunteers at Maitri, and a man deeply interested in bridging the religious and secular worlds. Even though I've been aware of Richard's presence at Maitri for over a decade, I have never had the opportunity to sit and visit with him. Now, the floodgates are open. He brings up St. Theresa of Avila. I start talking about scholar rocks. So much to share! Tova Green from Hospice by the Bay has also been a rich source of help with organizing my support community as well as teaching me how to use the financial coverage system that's available here.

Steven Grafenstein from Hospice by the Bay brings me a focus on my spiritual self. Who is my spiritual self? What are my fears about dying? Are the people with whom I still harbor resentment? Anger? Sadness? How can I clean up those relationships before I die? All of these questions have answers that lead me forward. At this point, I can happily say that I plan to die with a cleanliness of feeling that feels very light, very clear. Imagine having no lingering "stuff?" Yet, that is my goal, and it feels entirely attainable.

As my body changes daily and my work to finalize my life's relationships comes into final focus, I feel an ease and relief that I never imagined possible. The support to accomplish my final tasks is all around me and within me. What blessings!

2009-10-15T21:17:00.000-07:00

October 15th, 2009:

For the first time in five years, I got together with Marilyn, my past life regression hypnotist, and had a session on Wednesday. We both wondered if the amount of meds in my body would make it difficult for me to be hypnotized and to let the memories come through in my current voice. Turned out, there was one brief time when I became anxious to find my way to the place and time that I would report about, but after telling myself to chill, I realized that I was hovering over the North part of Paris near the road to St. Denis.

Briefly, I spent an hour recalling my life as a furniture maker--specialty was fine chairs--in the late Seventeenth Century. We used to say in our craft, "The rich always need more chairs." I was well-trained and became prosperous, innovative and well-regarded. My wife worked in a store that sold compotes, jams and other foods that had long been produced only in private homes. Although the concept received considerable derision--who needed to buy another person's recipes?--the truth was that most families had little or no access to the exotic fruits and produce needed to make these treats. Although people didn't brag about shopping in her store, it was quietly popular and very successful. It was a life of the senses. Friends and family would talk for hours about aromas, essences, flavors, nuances of food and wood. My hands were incredibly sensitive: I could read wood grains by running my palms over lumber. I loved the workshop's stenches of varnish, lacquer, paints, wood.

When my life was ending, I became very depressed. In spite of my enthusiasm for the church's pageantry and splendid architecture, I did not believe that I would survive death. All the people I had known and loved would be lost to me. When my time came to leave my body, my mother and father appeared and so did my best friend from childhood long past, and my three children who had not survived infancy. Additionally, one of my favorite patrons who had deeply believed in my artistry was there, and he said, "As you rise up, reach out your arm. I'll link the crook of my arm with you. Your mother will hold the other side. We'll all join together. We can move upward together." This startled me because I assumed that my arms would stay with my body which was still on the bed. I looked back and yes, there were my arms, there was my body lying on the bed. But what I felt was a wonderful jolt of living current moving from my companions through me. I understood in that second that no one is ever lost in the universe. You can have solitary time, but there is always a return to others. We are never alone for long. My deepest fears of dying and loosing others was erased by the experience of feeling connected. And then, in a long line, we flew forward into the after death experience.

Before I came out of my trance, Marilyn asked, "Why did you have this particular past life reveal itself today?" Well, I knew the answers to that question. "First, to remind me of a highly sensory, happy life full of productivity, and enthusiasm at a time when I am about to leave this life which has similar features. The other reason is that in writing my blog, I've reached the point where I want to start talking about dying and the after death experience. When I was a french furniture maker, I doubted the enduring relationships between people that connected them across lives. At my death, I had the experience of literally being joined with people I loved. I felt the human connections in my soul as I moved away from my body. By retrieving this memory, I can write about something in the blog that I've experienced rather than just present a speculation about what I imagine to be true."

2009-10-13T21:28:00.000-07:00

October 13, 2009:

As my apartment empties and the bare hardwood floors and walls with no art reveal themselves for the first time in 16 years, I'm understanding more about what caused me to create the apartment and where its vitality came from. When I moved in, perhaps a quarter of the art had already been gathered. The new pieces were found since I started living on Fulton St. across from the park. One immediate influence from the beginning was wanting to bring the green of the park into the front room. Green and landscape were brought indoors via objects that worked with green and one large painting which mirrored the outdoor hill and trees. The bay window's reach toward the park bridged the outdoors and the inside.

There was no conscious plan about any of the apartment's creation. I didn't buy things to support a larger piece. No single piece had clear dominance. The guideline was color: lots of well-defined color. Most of the time I lived there, I would have said that the apartment's task was to contain many types of beautiful objects: glass, rugs, paintings, textiles. Most of the finds, as I brought them home, fit beautifully from the beginning. Very few pieces were taken back or passed on quickly.

This morning in conversation with my friend Betsy, we rightly concluded that the common denominator for all the pieces was that they possessed a vivid amount of energy. These energies reached forth into the room and mixed with energies from their neighbors. Even though you couldn't see the energy, you could feel it. The large red glass plate that Nancy Becker created to more fully understand Georgia O'Keefe's Red Poppy painting came to life at night when the pole lamp underneath was turned on. The lamp shade funneled light up underneath the oval glass and Wow!, it shone. Similarly with the Leon Applebaum bowl that lived on my desk toward the back of the living room. It also slept by day, but at night a track light angled directly into the hollow of the piece so that the colors and the multiple glass bumps and shapes would come to life and be the most exciting activity in that part of the room.

I'm sure that the objects altered their energy in response to support from other pieces. There was also the shifting of the vibe in the apartment because of what happened there. It was a peaceful place. There wasn't lingering ozone from arguments and contention. If there would have been, I would have dealt with that, but from the beginning, the rooms had a serenity that endured. That safety was enhanced by reading astrological charts in the living room. It was a good place to talk, a very good place to talk. Typically, a visit from someone meant that we'd sit in the large chairs at the bay window for a while. An hour or two. Drinking tea. Usually not listening to opera or any other music. Talk was honored as the most important event and distractions were discouraged. But, when I was alone there were many hundreds of hours of listening to music. Astrology readings, the cultivation of relationship, music playing for long stretches when I listened to it and did not talk with someone else. Those were vibes that my friends and I created and gave back to the art that had been assembled to encourage warmth, curiosity, joy.

It all worked. All the parts, living and mineral contributed. Clearly, the apartment and it's dispersion strikes a deep cord with my need to explain what's also going on with my body. Of course my apartment is not dying of cancer. Still, it is being radically transformed, unwrapped and given back to the energy pool. And that's what will happen to me as well. Or, that's part of what will happen.

I find myself wanting to express some of what I think will happen during and after the dying process. In some ways, this is the part of the blog that I thought I'd most enjoy writing about. Those feelings were pretty strong during the first entries of the blog over a year ago. All of those expectations vanished quickly as I began to enjoy talking about what was happening in my current life, not speculating months in advance. However, I still have many of those ideas and I'd like to share them now and again in the time that remains.

2009-10-10T22:01:00.000-07:00

October 10th, 2009:

While I was at dinner this evening, my friend Mimi called and left a message on my cell phone in the form of a poem titled The Layers. The final line was, "I am not done with my changes." Well, yes, I had to agree. I'm not done with my changes.

I've felt a lot of bubbling and churning just below the surface for the past couple of days. I've ascribed this to my impatience that the apartment get cleaned out, keys handed over, and that I fully move into Maitri. I have so enjoyed spending day after day here at the residence. Yesterday, I started anticipating working in the apartment today with dread. "Can't it just be over?" I asked myself. When I woke up this morning, I felt crabby and distant from my old eagerness to pack and move. Then I burst into tears while still in bed. I didn't want to work. I didn't want to be sick. I don't want to die. Every direction felt oppressive, mean, heavy.

Then the great fugue of the day began. Feelings of sadness and drear followed by a friend reaching to connect with me. Down then up. After a darkness through getting dressed and eating breakfast, I returned to my room for a phone call with my friend Laura who lives outside of Chicago. Within minutes of hearing her voice, I was engaged in our conversation, delighted to hear the sounds of her voice, eager to know what she was doing with her interesting life, reaching to clarify my answers to her questions that centered around, "How are you?" By the end of the call, we were both excited from the quality of our communication and the joy of knowing each other.

I've been conscious of remembering to say yes when people ask if they can help out with my moving and other tasks. A couple of weeks ago, Chris Harris volunteered to help me pack the boxes that would be sent around the country to people who couldn't come and pick up their gifts at my apartment. Today was the day when her expertise was needed. And wow, did she show up in many ways. She retrieved me at Maitri, went to the box store to buy shipping containers, and then, with the help of Ken and Gaetano all the various packages were filled, insulated, sealed, labeled and prepped for their journeys to the various directions. I was so grateful to know that they could do a great job. This time I didn't need to say goodbye to the contents. Rather, I let them be handled with skill by other people. I trusted that it would all be done. And it was. Again, my discomfort at being in the apartment was eclipsed by the reassurance from friends that I would be helped, supported, taken care of by their love.

And then, the frosting. My friend Adrienne had come to the apartment from her home in Mendocino. I don't get to see Adrienne often, but today, after retrieving her tansu and two beautiful kimono, she returned me to Maitri and we had lunch followed by a lovely, reassuring visit in my room. What bliss! Another fine time with a person I love. "I am not done with my changes."

These are the touchstones in my life these days. When I visit with my friends, whether on the phone or in person here at Maitri, I am settling into my next phase of life. There hasn't been a visit that lacks a significant revelation. With each person, some gleam of wisdom, some new facet of knowledge is revealed. Of course, I never know what it will be. But it never fails to appear: the nuance or fact or opinion that gives me a new view about my life or the other person's truth. Forward. More. Rearranged significance. And the time to enjoy it.

2009-10-06T22:21:00.000-07:00

October 6th, 2009:

Unexpectedly, I have had my first experience of loss at Maitri. Although this home primarily intends to provide end-of-life care, it also offers respite care. When a person is loosing the ability to provide for their needs at home, they can move to Maitri for a three month, six month stay to build back their stamina. When it's determined that the person is well enough to move back home, they do.

With my new friend Cicero (Chee-Chair-O), it was more extravagant because he moved to the U.S. from Brazil some thirty years ago. When Cheech moved to Maitri last April, he was carried in on a stretcher. He was not expected to live long. His pain was so severe that he openly considered suicide. And then, the Maitri magic kicked in. Cicero stabilized. Then he started to get better. He learned how to walk again. In July his condition had improved so much that he was able to fly to Brazil to visit with his family for the first time in two years. There, his sisters took care of him, and he took care of his mother. Given her advanced age and declining health, it was decided that Cicero would relocate to Brazil to spend an unspecified time with his family. It might be for two months or more. No end date determined.

Since the health care available in Brazil for his multiple conditions was not equal to the care here, Cicero planned to visit at home and then return to the U.S. if his health started to decline. Although he came to Maitri as a hospice patient, he morphed into a respite patient. Early this morning, the respite was over. Cicero loaded up his possessions, called a cab and headed for the airport and the long flight to Brazil.

Of all the losses that can be suffered at Maitri, this is surely the lightest and easiest. No death. A happy family reunion. The beginning of a finale with his family that could not have been imagined a few months ago. Many reasons to rejoice. However, as he became my friend in a dramatically short time, I was caught off guard by my feeling of loss when I realized yesterday that he would leave. And when I woke up this morning, my first thought was that he had left.

Although he was raised in the Brazilian upper class with it's systems of private schools, private clubs, homes behind walls and all manner of protection and sequestering from the larger turmoil of Brazilian society, Cicero had a deep yearning to be free in the world. He wanted to take the cross town bus. He wanted to be mingle in crowds on the street. He wanted to move to America where no one would have any idea that he was of a protected class. So he came North at the beginning of his maturity and lived her for 30 years.

In that time, he became a key member of the hospitality community; meaning, he was a lead concierge at the St. Francis Hotel on Union Square. And he cultivated many other personas as well. A notable equestrian with his own horse. A serious opera, symphony, ballet aficionado. But most important, he developed an integrity and ability to cultivate people that was memorable. I liked him immediately when I moved into Maitri, and, as good luck would have it, our room adjoined each other so we anchored the north end of the garden.

As we enjoyed each other's company more and more, time ran out. And that was the loss that I faced in the past couple of days. Cicero didn't die; far from it. In fact, his plans are to return to the States when his health compels that; hopefully to return to Maitri. We may well see each other again. Here. But for now, he's gone and my inner kid misses him a lot. He was such a companion. So much fun to simply sit next to and enjoy.

As I said, this is an easy loss. But it's a foretaste of other losses. There will be people I know now and dine with and enjoy in passing who will die while I'm here. And, of course, all these losses are paths toward the biggest loss that I am heading toward: the eventual death of my self. I know that's a major reason that I'm here. It's not the only reason because there's also some serious living that I'll experience. But the ultimate intention is that this is where I want to die. Thank you Cicero for your friendship and intimacy. Thank you for reminding me that losses are incremental, not always just sad, sometimes beautiful and able to lead us back to ourselves and our mortality.

2009-10-05T21:44:00.000-07:00

October 5th, 2009:

As the apartment empties, my urgency to complete the effort relaxes. The lessons from this part of my illness have been rich and surprising. They include:

It was as much fun for me to give away my things as it was to collect them. Once it became clear that my final task was to find new homes for my treasures, I became unattached to living with them. Centripetal became centrifugal. I thanked all my things for the gift of their energy in my home by searching to find their next place in the world.

I am most adept at dealing with one thing at a time. I've developed my concentration skills by focusing on one event, one conversation, one thought at a time. This last Saturday was the busiest give away day to date. At one point, I had two new people coming in the door, one load going out the door, books being loaded in the living room, three phone calls in under two minutes, two people asking for more tape and bubble wrap, etc. I was totally overwhelmed and confused. In response, I became testy and abrupt. My goal was to queue all these requests into one question at a time. Didn't happen right away. Later that day, when I returned to Maitri exhausted, I knew it was from the multi-tasking, not from the loss of my objects or the dismantling of my home. That amount of churn won't happen again (at least not with moving into Maitri).

Most things I found easy to give away, but there were a few objects I didn't want to give up--yet. I've brought a couple of rugs and textiles to my new home. They're beautiful and they fit well in this room. When I die, they will move on to their next owners, but for now, I still cherish them by living with them. One of these not-ready-to-let-go objects is my stuffed animal, Best Bear. I'm going to give him to my godson Willem. When I went to Portland in early August, I planned to take Best to Willem and make the gift in person. But I wasn't ready to let go. A couple of weeks ago when Kathy Clarke drove up to Portland, I assumed that I'd put Best Bear in her car. Nope. Couldn't do it. Not ready.

Then there's another group of things--mostly my other stuffed animals--which have a different destiny. These are the oldest treasures I have. There's a Mrs. Santa Claus doll from age 3 or 4 and a wonderful stuffed monkey from the same age. I've made an agreement with them over the years that I would always take care of them. And I have. Now they are ancient and frail. Their skins are rubbed raw, seams are threadbare. Across the decades, I sometimes wondered what I'd do with them at the end of my life. Frankly, I don't want to give them away. At some very deep level, they are mine and they have aged with me. So I made the decision to take them apart carefully and release their energy back to the universe. As I opened up their seams, I told them how much I loved them and how much I felt their love and companionship across the years. Carefully, I put their stuffing in a shopping bag, then their empty clothes and fur. Having separated them I put the shopping bags into recycling and felt their love flying through the sky. It was the first time I can remember doing this with an object. For sure, I've written vows or promises onto pieces of paper and released them in flames for purification ceremonies. But the dismantling of my oldest toys was a new experience. I realized how much love had bonded us. I wanted them to be free again. I couldn't just throw them away. There had to be thanks and intention. And there was.

2009-10-02T21:02:00.000-07:00

October 1st, 2009:

Every day, I'm settling in more at Maitri and every other day, I give away the contents of my apartment. Gaetano and I have been able to create a rhythm of scheduling people for pickups on alternate days. It's very reassuring to have "a day off" every second day. Frankly, I need the pacing. Showing up to meet people at my apartment is relatively easy. I do virtually no lifting, and I am certainly not running up and down the stairs. And yet, even though we're at the apartment for three hours on a long day, once I'm back at Maitri, an exhaustion kicks in that is fueled by seeing the apartment dissolve before my eyes. I don't have specific feelings of loss, anger, regret. But I do have emotional fatigue. Knowing that the next day I'll be able to stay at Maitri is reassuring. It helps get me through.

The full time days at Maitri are starting to acquire a color and pattern that is very exciting. And I've only just begun to explore the new dimensions of the life I want to move into. A friend wrote a lovely poem that expresses her hopes for how this time at Maitri can be spent. It echos many of my most fervent wishes and expectations. It reads:

With you

I don't want to walk fast with you.
With you I want to stroll and be slow,
To drink you in like a single malt on a fog ridden night

The lazy smokiness of peat fires,
Your smile just a warm honey glow --
A moment sipped to linger on my lips like the sparkle of your light.

I don't want to move fast with you.
With you I want to be slow.

I don't think that anyone has likened spending time with me to savoring a single malt Scotch, but I certainly agree with the sentiment of not rushing, of taking time. That's how I see myself creating closer contact with people who visit me during the next months. As the apartment empties and the once-daunting task of clearing away my contents sifts down to the last big pick up day (tomorrow, Saturday, October 2nd), I'm openly envisioning what's next. Key words are: spacious, slow, reflective, sweet, meandering.

Also, my team of end-of-life professionals are now settling into place in the course of a week. It's amazing what's available in San Francisco. There's the Maitri team of daily care and social work which supports my life here. The nurses and other staff check in regularly to see how I'm adjusting. Am I connecting with other residents? Do I have complaints or concerns? Then there's a contract agency--Hospice by the Bay--that supplies the pain management guru as well as a social worker worker who asks about my support groups and how well I am held by my community. Today a new resource jumped aboard: a guide to explore how I'm grounded in my spiritual beliefs. I brought my own team of professionals: my therapist who visits twice a week; my primary care physician and oncologist who I see on an as-needed basis. Finally, I have a twice-a-month call with a teacher who is guiding me through the meaning of the chakras, and today I set up my first appointment with my past-life regression hypnotherapist. I am quite excited about doing more past life regressions.
Amazingly, there is no overlap between all this support. I am such a lucky guy to have all this attention and help available. To people who reply, "You are the one who creates the luck," I quickly reply, "Sure, Who could resist all this quality assistance? Not me."

Ever since I was in my mid-teens, if someone asked me how I would hope to die, I would answer with absolute clarity, "I'd like to die of cancer. I'd like to have time to be reflective before I die. I don't want to die suddenly in my sleep, and I certainly don't want to die violently in a car accident or war. Cancer would give me time to talk with people about what's happening and summarize what my life's encompassed." Of course, that's just what I want, but I've wanted it for a very long time. It's still the most desired path for me. And, it looks like that's what will happen.

This afternoon, I gave a 30-day notice that I would be vacating my apartment. This is another step into full-time Maitri life. Visits from friends, visits from end-of-life professionals. Less tasks and more open time. I've claimed for months that I plan to spend more time watching TV and DVDs. The plan is to bring a good flat screen TV into my room either tomorrow or Tuesday. We'll see if the new screen inspires me to start turning on the set or if I'll continue in my known path of reading and listening to music. These are nice choices to face.

2009-09-30T20:40:00.000-07:00

September 30th, 2009:

Yippie! Connectivity has been restored, and I am now typing this entry on my desktop computer that has been my portal into the cyber world for a couple of years. I am online, in my permanent room at Maitri.

When I started my intake at Maitri two weeks ago, I was given a sun-drenched room overlooking a busy intersection. I enjoyed the room and didn't bond with it at all. I just spent time there. The fact that the pictures on the walls did not appeal to me mattered for not. But yesterday, it was time to move into my permanent room. Suddenly, I felt deep resistance to leaving the temporary room. I was busy in the morning with my social worker and my therapist so I didn't have to move then. After lunch, the attendant who offered to make up the mattress and linens on my bed got called off to another project, and I didn't lift a finger to request that another person get my bed ready. After dinner, I lingered a bit more. Finally, the bed was ready. I had moved all my clothes and papers into my final room. I quickly jumped out of my clothes, into bed and read for a bit. Then, I closed the book and looked around the room. This was it. My final place. I had moved into the room where I will spend the last months of my life. Quite likely, this is the room where I will die. That was the reason for my hesitation to move in and claim residence.

Part of my process of dying involves long plateaus of acceptance punctuated by sudden, abrupt and expansive realizations that my life will end soon. Not next week, but soon. Moving into my final room was such a realization. A connection is made that nudges me closer to my end. The result of the new acceptance is that my dying becomes more real. More inevitable. It may be hard for others to believe this, but I spend most of my time living in the now, in the past, in the future as I always have. I'd say as little as 5% of my time I remember that I am terminally ill and that I will die in the next few months. Point being, I don't think about dying all the time. Far from it. When I do catch up to this part of my overall reality, it's usually an easy segue. Occasionally, if the mortality reminder is harsh or brutal, then I'm stunned or pained which knocks me into overwhelm. Moving into Room #5 is somewhere in the middle of that continuum.

Waking up this morning, after my first night here, I felt more hesitancy. I knew that I'd spent my sleep time reaching my antennae out to the edges of the room. That's one of the ways I move into spaces; I stretch to their edges as if to memorize the container. Early morning light was golden and rich. After breakfast, Wendy came by for a visit and she sat at the edge of my bed. We held hands and talked a bit, but not a lot. That's when I really started to settle into the room. What I felt holding hands was intimacy. Closeness. Comfort and love. If I can create that in my living area, then I'm happy. On the first morning in Room 5, intimacy was created and nurtured. My final room is off to a very good start. The resistance has evaporated. I like it here. There's room for me and my friends to be ourselves.

2009-09-28T14:55:00.000-07:00

September 28th, 2009:

This will be a short but important posting. First, I am leaving my land line of many years and switching to my cell phone for staying in touch. The old number (415) 921-1819 will be deactivated in the next few days. Please erase it from your records. In place, you are welcome to use my cell phone number as often as you like: (415) 517-9278. When my number at Maitri becomes available, I'll let you know what that is as well.

Also, my PC is minutes away from being moved. It will take two or three days for it to be set up at Maitri using the wireless network. I will be back online as soon as possible and will continue the blog at that time. I can still access incoming email and send replies.

In a couple of days, I'll be totally available electronically. We'll be in touch then!

2009-09-27T14:12:00.000-07:00

September 27th, 2009:

The emptying of my apartment is happening at full throttle. It's so startling to see vast expanses of wall space for the first time in sixteen years. Places where there were well-known rugs, textiles, paintings are now bare white, highlighting the wall moldings that gave this apartment such a distinctive formality.

What I'm aware of is how much prior anticipation I've done to release my things. This is unique among my community of friends. I started saying goodbye on the conceptual level several months ago when I first imagined giving specific objects to people. As my health declined, my urgency to disburse grew. Now that it's happening, I am reaping the relief that I've hoped for. Things are going to their new homes. As my friend Jackie Udin said at the end of her visit to pick up books, "Have a wonderful rest of the day giving things away!" I get to thank everyone, say goodbye to the objects and experience as complete a closure as I could hope for.

To others, it's not so easy. This apartment grew into a well-integrated space for all the objects that found their home here. The vibe was remarkable: serene, lots of specific beauty, nothing overwhelming, an intuitive mix of interesting pieces. Nothing of great value, but every object made a contribution. Building this home turned into one of the most pleasurable events that I worked on over the past decade and a half. There was never an overarching aesthetic or plan. Other than the repainting and installation of track lights some eight years ago, there was no major overhaul. But slowly, piece by piece, the collection grew into a home that was conducive to visiting over a cup of tea and letting friendship deepen.

For my friends who experienced the joys of this apartment, it's wrenching to see it taken apart. As the objects disperse, the container of our friendship also evaporates. That's a lot to give up. And it's a step closer to the ultimate separation which will happen when I die. I am seeing the end of the apartment as a dress rehearsal for saying goodbye to me. That's why people come here with a spirit of bravery and courage and sadness and poignancy. It's the end of an era in some very real ways. I have to say, it was a lovely time. I feel like I used this apartment well and that it held a great deal of fine energy. Thank you, good apartment. Thank you for your solid framing and your willingness to nurture so much love and beauty for me and my friends.

My last act after the final pieces of me go out the door will be to smudge the rooms with sage. I will let cleansing smoke filter the air of that day. I will thank each room. I will walk to the front door and walk into the hallway. A turn of the key, and I'm gone. Off to my new home.

2009-09-25T14:01:00.000-07:00

September 25th, 2009:

It's been difficult to blog over the past few days. I am living at Maitri, and my computer still lives in my apartment. This will resolve in the next few days when I move into my assigned room at Maitri. Currently, I'm in a temporary room. When I move my computer and reduced collection of art, clothes, etc. into Room #5 at Maitri, then all of my daily effects will be in one place. An interesting feature of Room # 5: it faces an inner courtyard with a garden. My current room faces the busy corner of Church and Duboce streets which is a major public transportation hub. I have been enjoying the urban noise and commuter energy that surges up to my current room. However, I can feel my body wanting to move toward a quiet zone. That's why my new room has such an attraction for me. I can feel myself and my new room bonding even before I move in.

As I work with Gaetano to set up a schedule for people to pick up my gifts to them, the task and the managing of all the arrivals both excites me and exhausts me. I spend time imagining how good it will feel when there are no more pickups of gifts. I will be in a room facing the garden. My body can rest on the bed and see out into the plants and flowers. I am envisoning staring into windows that give into a mottled with leafy shade, serene, internal world. Never in my life have I felt such a turn inward. I hunger for it. And, fortunately, it's heading my way.

As the gifts start to move out of the apartment, it's interesting to watch myself be relieved and grateful to see them go. Also, when working with my friends Jeremy and Gaetano this morning as we took pictures off the wall and bubble wrapped them, I found myself becoming curt and tongue tied. I tried to remember the name of the covering on my bed (answer: bedspread), but I couldn't get to that vocabulary word. "Covering on the bed," I struggled. Both guys were wonderfully patient. I realized that I was winging it for wrapping, planning, making decisions. And it all resolved beautifully. Everything was wrapped safely, loaded into my friend Kathy's truck and sent up to Portland, Oregon for delivery. The first day of major divesting passed without problems. A few more of these days and the apartment will be cleared. Gratitude. Anticipation. Relief. Focus.

2009-09-21T15:49:00.000-07:00

September 21st, 2009:

The past weekend found me settling with increasing comfort into Maitri. My tasks are to relax and to become more adept at anticipating my pain management before the pain takes over. I have the services of Hospice by the Bay to help with meds. This agency has deep skills over many years and they are available to consult on my needs around the clock. Basically, the work with my primary care physician and with Maitri to establish a protocol that keeps me comfortable. That sure fits with what I want!

Today, I started sending out announcements to people who live in the Bay Area to plan a time to come and pick up the gifts that I am giving to them. Not all the announcements have been sent, so if you live locally and didn't get a message, don't worry. Also, not everyone has been given a gift, especially if they didn't ask for anything. For people who live further away, I will be in touch with you to set up shipping arrangements.

Gaetano has generously offered to coordinate the pick-up schedule and I am very grateful that this process is underway. My biggest short-term task is to empty my apartment and everyone who takes something is helping me do this. Thank you, thank you for taking over the stewardship and enjoyment of the objects that I love.

After enduring a couple of days of exhaustion and discomfort shortly after moving into Maitri, I suddenly felt much better walking on Friday. I was so surprised. I had cancelled several entertainment events that I'd really wanted to attend including plays in Ashland and the first night of Mark Morris Dance Group during their Berkeley Fall visit. As much as I wanted to go, I knew that my body wouldn't allow me to walk any distance, even with crutches or a wheelchair. So I just thanked my already full life and stepped aside from those performances.

Then, I suddenly felt better. As I listened to my body, I felt that I could attend the San Francisco Opera's production of Il Trovatore. I also knew that I didn't have to. But I could if I wanted to. And I wanted to. After hearing several fine performances of this riveting opera over my forty five years as an opera-goer, I had the pleasure of attending the definitive version on Saturday night. It all worked. The sets were good to wonderful, the conductor had a brilliant vision of the momentum and colors he wanted to create, the orchestra blended beautifully and the singers excelled in every direction: vocal power, nuance, dramatic interpretation, strong character development and lavish, opulent singing that did not stop until the final cry of "Vengeance!" It was great grand opera and a fitting final performance for my lifetime of loving this above all other art forms.

As I settle into managing the distribution of my goods and adjusting to the daily routine at Maitri, I am amazed to realize that a week ago, I still lived in this apartment and I was just about to attend the Maitri Board of Directors dinner where it became clear that I needed help and 24 hour care. How quickly things happen with the right people help out!

2009-09-18T14:43:00.000-07:00

September 18, 2009:

I moved into Maitri quite suddenly, so my plans about how to use my two homes has been pretty seat-of-the-pants. And that's turned out to be quite fine. After being in my temporary room for a few hours (my permanent room becomes available on Sept. 30th), I decided that I needed to let my roots grow into my new home. I didn't want to jam those roots into their new environment, rather, let them ease in at their own pace. This meant that I spent my first night there, then, the second night as well. Now I see myself spending all my nights there. That's moving in.

So much of tuning into the rhythm of the place involves being there for meals and night time. There's so much to adjust to. I have pills brought to me at specific times. There's the option of dining with other residents or in my room. And speaking of dining, I no longer have to cook for myself. A mixed event: I love to cook and I like the results. Still, the time and dexterity are harder on me than in the past, so it's appropriate to hand over that responsibility. My current room overlooks the cross streets of Church and Duboce. This is a major traffic hub and I have to say, I totally enjoy the urban sounds of the streetcars, buses, cars, underground, etc. I used to take all those transportation systems within the past week and it cheers me to hear the mechanical brakes and accelerations as people are carried from one place to another. My apartment on Fulton is much more quiet by comparison and I have a big tolerance for the noise.

The two tasks that occupy my thoughts are the dispersion of my worldly goods and setting up a telephone tree. Here are my thoughts about giving away my stuff. Many people have requested something or things that they've always liked of mine. Also, I've asked people to take something that seems a good match. I've kept a list of the people and the things. In the next few days, I'll send out an email to each person reminding them of the gift. If the object has a dimension that makes it hard to put in a car, I'll send the measurements so that you can arrange for appropriate transportation. If you live outside the Bay Area, we'll figure out shipping. I would like to be out of this apartment by the end of October, so the next few weeks will be busy with people arriving to pick up their things. All of this retrieval will be scheduled. I may be here, or it may be another person such as Gaetano who has volunteered to be there for the occasion. Unfortunately, this will not be a major social moment. I would really appreciate it if you could come here, pick up your gifts and do a slow U turn. We can visit at leisure when I am at Maitri.

The second planning is to set up a communication tree. Here's how that works. Eileen Lemus has agreed to be the trunk, the person responsible for sending information about my condition to ten or twelve people. Those ten or twelve people will have a list of folks that they relay the information to via phone or email. This system allows for 150 to 200 people to receive messages very quickly. Whereas, if one person were to try to...well, let's not go there. For right now, this tree isn't an immediate requirement. It's growth will start when Eileen contacts the branches and the branches contact the twigs or leaves. Sorry, this metaphor is getting awfully tired very quickly! But, you get my drift. Right now, the blog serves to keep all of you informed. The tree will be most appreciated during the end of my life when I'm no longer able to manage the information about myself. I'll be living it, but I won't be able to report directly. At that point, the blog will be taken over by two or three writers, and the telephone tree will also be sending out information. As the tree starts to grow, you'll be contacted. Whew, no more organic allusions for a few paragraphs!

In terms of my health, I am very well cared for. My pain management system is being tested, tweaked, etc. I am much more comfortable. My ability to sleep has always been good, but I am more deeply rested in the past few days. It's as if my body said, "OK, I'll get you through the end of your work and career, and then I need to fall apart a bit." Which is exactly what happened.

I know that many of you have questions about how to reach me. Right now, I retrieve my messages from my land line twice a day. You can still use that number--(415) 921-1819--for a couple of weeks. After that, you may use my cell phone number: (415) 517-9278. When I move into my final room, I'll give you that number so that you may directly call me on that line as well. I don't imagine a lot of correspondence, but my new address is Maitri Compassionate Care. 401 Duboce St. San Francisco, CA 94114. Attn. George Stevens

As many of you know, Maitri is located near the corner of Church and Duboce streets. At the exact corner is the vintage clothing store: Out of the Closet. Maitri is right next door with a Japanese entrance. Parking is sketchy, but the public transportation is fabulous. Actually, parking isn't that bad. Just remember that you are in San Francisco!

I have felt so supported by the people who moved mountains to get me into Maitri within 24 hours of realizing how deeply I needed care. Also, all the people reading this blog whether you have sent emails or not, your energy has been a part of my ability to make this move with little or no ambivalence. The time is right. The place is available. It's my pleasure to make the move.

2009-09-16T16:21:00.000-07:00

September 16th, 2009:

My last post started: 16 days until I move into Maitri. Wrong. As of this morning, I moved into Maitri. I have started my intake with the social worker and the nurse. Tomorrow I'll start working with the Hospice person to manage my medication. So, what's all the hurry? Why is this happening so fast?

A few hours after my last posting, I went to the home of Boone Callaway and his partner David for a dinner hosted by the Maitri board of directors. Also present was Tim Patriarca, Maitri's Executive Director, and Traci Teraoka, the person who arranged the decor and furnishings that set the feeling tone of the residence. As I was walking down the stairs of my apartment building to Traci's car, I made it to the last stair, stopped to rest and was suddenly overcome with pain. I was so overwhelmed that I wept. Traci comforted me and presently we continued to the party. Once there, I settled into visiting with the arriving board members until the pain returned in full force. To manage as best I could, I went into another room and lay on the sofa, breathing until my overwhelm receeded. By the time dinner was served, I had relaxed a lot.

As the courses were served, I managed to stay with the conversation most of the time. We started by going around the table and expressing our gratitude for each other, stories about Maitri, memories of my service over the years. My own gratitude centered around being held in this group as a sick person. Indeed, I was sick. Right in front of everyone. Then I spoke about how much it meant to me to know that Maitri would care for me in my final weeks and months. Between courses, I relaxed by getting up from the table and lying on the living room rug to relax. By toggling between sitting and resting, I made it through the evening.

Before the party broke up, Traci had asked if she could spend the night to be sure that I had any assistance I needed. A week before I would have declined her offer; on Monday, I accepted without hesitation. Also, Tim suggested that I could move into Maitri sooner than planned. As soon as Wednesday (today). Again, I said "Yes!" immediately.

The next day, Traci and I had a leisurely breakfast and I started talking about how much I had enjoyed the evening. After promising to stay in touch through the course of the day and move as many mountains as necessary to gain early admittance for me, Traci took off into her day. Within a few hours, she called to see how I was doing. Ever the rose-colored-glasses romantic, I waxed on about how well I was getting around, etc. Traci listened politely and then said, "Last night was not only fun. It was also very scary and frightening to see you in that much pain. We were really concerned about what to do. Your pain management failed and we witnessed that. It was difficult to watch." I knew that she wasn't in any way blaming me, rather, that I have spent so many months pushing myself forward to get things done, that now, with my energy declining and my tumor growing, I cannot fake my discomfort any longer. My strategies are failing with my health. What other people see is more realistic, less sanguine.

Quickly, I assembled my application for admittance to Maitri. That afternoon, Wendy returned to take care of me for the evening and night and joined me in the scheduled appointment with my primary care physician. Then, we stopped at Maitri to drop off the paper work. Grace Molyneaux, the attending nurse who runs the medical side of the residence reviewed my application and said, "You can move in tomorrow." I was startled. Tomorrow? She explained that it would be easiest to get me started with hospice pain management as well as all the intake effort with no delay. Stunned, I left with Wendy who assured me that the sooner I had 24 hour care, the safer I would be. Clearly, a part of me wanted to get into Maitri for the safety and comfort. Another part of me felt startled to have the move happen so soon.

Just before noon today, I took a cab over to my new home. With a carry-on containing my meds, some clothes and a few toiletries, I entered my new home. Rather than climbing the stairs, I took the elevator up to the second floor. As I walked toward Grace's office, I was suddenly overwhelmed. This was it. I was here. In my final home. I wasn't just visiting. This wasn't a wander on the floor prior to a board meeting. This wasn't a social call. Sabrina the nurse came up to me, looked me directly in the eyes and said, "Oh, I am so glad you're here! We'll take good, good care of you. Let me help you with this." And with those words, I crossed the threshold and was led toward my new room.

2009-09-14T16:34:00.000-07:00

September 14th, 2009:

16 days before I move into Maitri. That's become my new goal and everything is being swept aside to clear the way for that change. What all this means is that my tumor is now so incapacitating that I have trouble getting from one room to the next in my apartment. My friend Wendy was a houseguest this weekend, and she has a background in nursing and end-of-life care. She watched me navigating up and down my stairs and at the end of her visit she sat me down and said, "I think you are in serious danger of taking a fall. You're a cancer patient and your bones have been weakened more than you know. You are taking a lot of drugs, and your gait is very, very unsteady. If you have a serious fall and break a limb, or worse yet, your pelvis, you could end up in an Intensive Care Unit and be too broken to even be admitted to Maitri. I hope that doesn't happen, but I have seen it happen in cancer patients. Take care of yourself better. Don't go out and take risks. You have to care for yourself structurally."

That warning really frightened me. But more alarming was the actual feeling of being in my body right now. I cannot walk with any ease. I am very unsteady. So I have decided to just empty my calendar of all commitments outside this apartment. I'll schedule visits from people while I still live here and of course, I happily look forward to seeing people when I get to Maitri.

This afternoon, I received a call from the radiation oncologist who I talked with last week and who had rushed me into appointments for treatment. This time, he was much softer and a better listener. I told him about my concerns around not wanting to take on serious risk of being hurt by the radiation. He agreed that there would be skin damage and loose bowels for at least a couple of weeks. I also asked about radiating only the portion of the tumor that had grown into my leg. This time he agreed to consider that procedure although he was concerned that the lymphatic system that cleanses my leg would not be able to do it's job since the portion of the tumor not radiated would continue to press on those channels. After his call, I was talking with Eileen and realized that I didn't want to even consider radiation until I am settled at Maitri. When I'm getting 24 hour care, I can entertain the notion of having skin burn care and attention to loose bowels. Doing all that at home while waiting to move would be a nightmare. Major nightmare. So, for the next few weeks, radiation is off the table. I just can't juggle too much. Never was good at that.

It's shocking and sudden for me to live out this rapid decline in my ability to walk. But it's happening, and so for the next while, I plan to stay in bed as much as possible and read, read, read. After all these months of being sick, I am finally taking to a horizontal position. It's the most comfortable and the most appropriate. Wish me well, please!

2009-09-12T12:24:00.000-07:00

September 12, 2009:

Thursday was a day of major conclusions and equally important beginnings.

The conclusions: At two in the afternoon, I went to my Thank You party hosted by my boss and co-workers at PG&E. It celebrated the end of my contract at the utility as well as the end of my career as a corporate writer. That's what I did over the past thirty years: corporate writing. I started as a technical writer, moved into training development, then system testing and finally I spent the past several years as a business analyst. All of these were writing jobs whether the result was a user manual, lesson modules, test scripts or requirements for new systems.

Jim Sterling started the party by talking about how he first met me at American President Lines back in 1984. I felt honored by his sincerity and enthusiasm; it's always been a grounding experience to work with Jim and to support his outside interests in Japanese culture, the growth of his family, his devotion to his friends. My boss Michael Wong talked about how much he had learned from me in the past months as I combined my illness with my continued effort at work.

Then it was my turn to talk about what the contract at PG&E had meant to me. First, how dedicated I felt about bringing standardized requirements to the business. To someone outside the world of information technology, this may sound esoteric, but it really means having clear agreements about what would be included in a new piece of software. Without these agreements, chaos is guaranteed. The other praise in my speech was to say how much I felt supported as a sick person at work. No one ever made me feel less-than or unwanted. During the last year I've had a hip replacement and cancer treatments. I went through chemo and the loss of my hair. I traveled to Southern California to detox from the chemo. I was not able to work full time, but no matter. During this year, I produced some of the very best work of my long career. I was treated as if I had worth, and I delivered value.

Finally, we concluded with a long session of stories that I told about people in the room. They retaliated with stories about me. All this was fueled with intense chocolate cupcakes from Boulette's Larder! What a surprise. I believe it was my friend Nil Taspinar who contacted Boulette's and asked them to cater the treats for the party. As it turned out, the whole party was a prolonged treat.

The beginnings: Earlier in the day, I talked with Daniel Hill, the intake coordinator at Maitri. I had written to him and my doctors over the previous weekend, saying that I was ready to move into the residence. My friend Margaret Hess read that blog entry and promptly called me saying, "I totally support your decision to move from your apartment. It's all about feeling safe." That summarized it for me: the move to Maitri is about creating the new level of safety that I need in my life. I need daily pain management and my meals prepared and no home to maintain.

I called Daniel and we talked about the room that will become available in the last week of September. It's room number 5, and it looks out onto the non-smoking garden in the Maitri atrium. It has good light (as do all the rooms). As soon as I heard that the room didn't face the street and wouldn't receive street noise, I said, "I'll take it." As I said that, I felt a huge, silent door swing inside me. I am leaving my apartment of the past 16 years, and I'm moving into my final home. I deeply, deeply want to do this. At this point in my life, the best way I can take care of myself is to let others take care of me. And I want to be taken care of. It's such a fundamental act of respect.

My date to move into Maitri is scheduled for September 30th. By then, my room will be painted and I'll know the furniture--bed, armoire, TV, etc--that awaits me. I will have selected the pieces that I want to take with me from my apartment. Of course, I have no intention of completely moving in the next two weeks. Here's the beauty of what will happen. I can start living at Maitri at the end of this month. I can sleep there, I can eat there, I can start to know other residents. Most days, I can come over to my apartment to pack things and be here when people come to pick them up. I won't live in my apartment as it disintegrates around me. I will come to the apartment as if I were going to a job. Indeed, it will be a job. I think this will lessen the sadness of seeing this home unravel.

Since making this agreement with Daniel on Thursday, I've had all manner of never-before thoughts bubble up for me. In the kitchen, I look at my diminishing supply of fabulous olive oil and I think, "Hey, there's enough to last me for the next two weeks. I'll never have to buy olive oil again." For the past forty years, I've thought, "What's the best olive oil I can find?" There will be many, many such realizations over the next two weeks, and I promise not to document them all in these postings.

My thought for the day was given to me a few minutes ago by Georgia Fuller. We were talking on the phone and I was telling her about my decision to pick a room and set a date for moving into Maitri. "Well," she said, "Your work isn't done there."

2009-09-09T18:03:00.000-07:00

September 9th, 2009:

Today has been all about taking care of business: get a smog check for Bianca (my car) and then off to a fun-filled round of scans, blood draws and more scans. The big lesson surrounding all these check-ins and check-ups was: Be willing to ask for help. Last weekend, when I told Ann about going to UCSF for an MRI at 7:00 in the evening, she immediately inquired, "Can I take you to that appointment? I'll be in town that day, and it would be no problem." I promptly turned her down. "No, it's easy for me to take a cab. But thanks for the offer." Why would I want to trap Ann in the waiting room of a hospital while I get scanned? She offered once more, "I can sit in the lobby and read magazines. I never get to do that. Really, it would not be a problem." And again, I put her off. Several hours later, I wondered to myself: why not accept Ann's offer? I'd get to visit with her. Clearly, she wants to help. Don't I need help? And that turned out to be the turning point for me: Why don't I need help? Because I don't deserve it? Because I have to be self-sufficient even as I become sicker and more debilitated? Fortunately, I changed my mind, contacted Ann and told her that I'd be happy to accept her offer for transportation to the MRI scan.

A couple of days later, same story, different circumstances. I was telling Gaetano about getting Bianca smog tested, and my trips to two hospitals for three types of tests all in one day. "Can I drive you?" he asked. Again, I deferred. "Oh, no, no. I can take taxis from here to there," I explained. When Gaetano proposed lunch, I wavered, then switched my position. I wanted to hear about his recent trip to New York. I wanted to catch him up on the avalanche of stuff that I was contending with. Twice in a few days, I changed my mind and let someone help me. I confess to being a slow learner here. I also want to state that it's my big learning curve over the next months. When I disburse my possessions, when I move into Maitri, when I let someone help me bathe, dress and eat if I become really debilitated, then that means asking for help. I can't do it alone, and I don't want to do it alone. Time to unlearn, unlearn, unlearn.

In the midst of this busy day of being helped, I stepped into an unexpected event that truly startled me. It happened toward the end of my afternoon of hospital visits. At 3 p.m. I was in the basement of UCSF at Mt. Parnassus getting a CT scan to assess whether I would be a candidate for radiation of my pelvic tumor. It was uncomfortable to lay flat in the scanner because my tumor has grown so large that I can't keep my right leg straight on the scanning platform. The lab tech and I worked to make me comfortable. He carefully fit me with a foam-filled pillow that would hold my position stable for the scan and potentially for the radiation treatments. Then, another tech came in and put tattoos on my pelvis and legs. I asked her what the tattoos were for, and she explained that they would position the radiation rays. Then, she handed me a card with an appointment for next Tuesday morning. "What's this?" I asked. "It's for your first treatment," she answered. "But I haven't agreed to any appointments. I need to talk to the doctor about what he plans to do based on these scans. He hasn't even looked at the scans yet. We just finished the CT. I have my MRI scans tonight." She looked at me very oddly and said that she'd get the doctor.

After a few minutes, the doctor arrived with a furrow between his eyebrows. "What's the problem?" he asked. "Well, I was just given an appointment for radiation treatments and I don't know what they will entail. I haven't agreed to be treated yet." The doctor replied, "I explained that to you during the first visit." I answered, "Yes, you explained the possible treatments and the possible impacts on my body. But that was an overview. I don't know what you actually plan to do. You need to tell me that. And you need to tell me when my advocate, Eileen Lemus is present. I need for you to look at the scans and summarize what your plans are so that I can agree or disagree based on risk to me."

By this time, the doctor was looking at me as if I was from Mars. "I've already gotten clearance from your insurance company to give you the biggest radiation treatment possible." I responded, "Thanks for talking with my insurance company, but you still have to talk with me. And Eileen needs to be present. I don't know what you plan to do, and I need to know before we move forward. For example, will you radiate just my upper thigh or will you radiate the entire tumor?" "Oh, I'll radiate all the tumor," the doctor assured me. "I would never radiate just a part of the lesion." "OK," I summarized. "That's new information, and I am not having any treatments until Eileen and I have heard the entire plan and agreed to it."

Making an effort to contain himself, the doctor tersely agreed, "Then we have to have another meeting. And we have to do this quickly. There is not a lot of time." I couldn't wait to end this negotiation. It infuriated me that our original agreement to discuss the scans had been completely overridden by the doctor's agenda. What would happen if I caved in and simply agreed to his medical wisdom? Would any damage that I incurred during the treatments be answered by, "I told you so?" Truly, it was a frightening encounter during the middle of a long day. Still, I felt good about defending myself and insisting that Eileen be present when the scans and my tumor and his plans were all laid out as a final assessment. Also, I felt like I barely dodged a bullet.

2009-09-07T16:24:00.000-07:00

September 7th, 2009:

I've been thinking a lot about how much has happened in the past year. At the end of August, 2008 I had my right hip replaced with led to the discovery of the tumor which led to my present state of decreased mobility and yearning to move into Maitri. It's been the fullest year of my life in terms of growth, moving through layers of shock and restabilizing with new plans.

It's also been a time of unprecedented loss. Externally, the death of my Mom was a sudden and blessedly easy passing for her. It's been a more subtle and hard-to-get-to loss for me. An obvious reason is that I've had a huge amount of personal drama in my face. My approach has been to let the feelings of missing my Mom and the impact of her legacy emerge in their own time. This has started to happen in an unexpected way. Since her passing, I've been hoping to have some sort of contact with my Mom, and that's not the sort of thing I can force. Doesn't work to say, "OK, Ruth, step through the veil for me."

I was sitting in the oncology waiting room with Eileen Lemus a couple of weeks ago when she asked me, "Do you feel your Mother's presence?" I responded in the negative. "Well," she continued, "I do. I'm aware of her. I first felt her during one of our visits to Dr. Jahan, and she was there at the Maitri dinner." I was astonished. "Really?" I asked. "Yes. It's definitely Ruth." Many of you know me as being very receptive to all manner of trans-dimension New Age, astrology and beyond interests. But I don't have that sort of relationship with Eileen. I could not have been more astonished by her even-toned certainty. Being aware of my mother was simply a part of her current reality. Since then, at low ebbs in this apartment, I have felt my Mom's presence. She is watching, caring, not talking out loud but definitely here. I can't begin to tell you how welcome it is to have a direct relationship with my Mom again. True, it's limited in many ways that are new to me. But it also has a connection that's stronger than anything I've felt since she died in early March. So good to be together again!

I was talking with Wendy this morning about what a roller coaster of a weekend this has been for me. On Saturday, I realized that I have to move out of my apartment soon or sooner to get the care I need as I loose the ability to walk. On Sunday, I stabilized this life-changing decision and accommodated to it. I could tell that it was a sound move because when I thought about it there was no ambiguity, no hesitation, no worries that this might be a mistake. And today, I am ever more at peace with the plan. I've started to complete my packet for admission to Maitri. I feel even more reassurance about how I am moving in the right direction where I'll get the care I need. Wendy summarized it by saying, "Your freakouts are very time-limited."

Tomorrow, back to work to put the final frosting on the big cake I've baked for my last project. Later this week, I'll have a going away party at work. I haven't seen this honor conferred on a consultant in my experience of working at PG&E. Full time employees, sure. But a consultant is usually given a hearty thank you and that's it. I am particularly glad for this acknowledgement because I like to think it includes all of me. Not just the work I've done for the organization, but also as a way to face the fact that I am terminally ill yet still alive and valuable. Big thank you's to my boss Michael Wong who has a large vision that sees beyond the outline of my worker bee self and into the fuller dimensions of who I am. What a fine guy.

2009-09-06T15:57:00.000-07:00

September 6th, 2009:

On Friday evening, I had tickets for a play: August, Osage County. As the hour approached to call a cab to get to the theater, I realized, "I'm not going tonight. I can't do this. It's just too hard to navigate the crowds and..." The point was, I just didn't feel that I could walk my way through the event. Although my pain management was in pretty good shape, I simply couldn't walk very well.

The next morning I woke up and as I lay in bed, feeling myself in my body, I looked around my bedroom and suddenly knew: "I need to move into Maitri as quickly as possible. Living in this apartment is over. It's been a wonderful home, but I can't stay here any longer." This awareness had the same clarity that I'd felt last Spring when my body told me: "You are not going to survive this tumor. You are on track and you are going to die from this cancer." As with the realization that I wouldn't survive this illness, the knowing that I should move soon was simple, implacable and washed with tears. Throughout Saturday, I wept.

I have loved living in this apartment over the years, but I also feel a ruthless urgency to move. Reason: my mobility is declining rapidly, and I can't imagine being trapped in this lovely prison. At this point, there's a definite pattern to my walking throughout the day. Mornings are the worst. Dr. Capaldini has suggested waking up a bit early and taking a couple of meds for pain breakthrough. Go back to bed and get up a half hour or an hour later when the morphine is active. That seems to help, but I am still fragile and uncomfortable with mobility. Then, as the day continues, I become more adept and easy in my gait. Still, I feel like my mornings are a view into my future. As the days advance, I will find it harder to walk. That's been my experience over the past couple of weeks. I do not expect to get better on my own. True, there is the hope that radiation my give me some relief and more mobility. But I can't endure getting worse by the day, hoping that radiation may solve my problems. If the radiation works, so much the better. I am still facing a decline in walking soon or not so soon.

As I hobble around, I realize how much I am going to need assistance. Also, it will take a while to move into Maitri. Currently, there's a room available. Still, there's paper work to complete, doctor's records to send in, all manner of agreements to sign and verify. Also, there's my apartment that needs to be emptied. I am so glad that I started asking people three months ago about what they'd like to have from my home. That's a good start to distributing my worldly goods. It's also just a beginning. There are many, many things that will need good homes.

My plans are to start moving into Maitri while I have September and October to empty my apartment. But what about my feelings of leaving here and stepping into my final home? The first word that comes to mind is: gratitude. I am going to need help and that's what Maitri offers. Knowing that I will be taking care of myself by leaving this apartment makes it much easier to move. Will I have remorse later on? I doubt it. I will certainly have happy memories, but I don't feel remorse looming. I am not going to get better. As yesterday advanced, I realized that I didn't have a shred of ambiguity about moving. This is something that I am wanting to do from the very core of my being.

I asked myself whether I was just having a rough morning and was caving in to panic in my own organized way. So I called a couple of close friends and talked with them about my difficulty walking and my yearning to move. What I heard from them was support and understanding. As I listened to myself talking with them, I sounded centered, grounded. Still, it required a lot of emotional effort to make such a big decision. In fact, it was way too much for me to think about or stay wrapped in for the course of the day. Fortunately, I had a major escape valve: off an on during the morning and afternoon, I read a really well-plotted detective story that takes place in the Marais in Paris. Reading about other people's problems really helped. When I had too much of me, I reached for the adventures of Amiee Leduc as she worked her way through a complex pattern of murders that used the Musee Picasso, Cafe Bofinger, the Rue Rossier and many other places that I've visited, wandered along etc. in my own trips to Paris. It was like changing channels: I'd attend to my planning issues, then, switch to characters who were facing betrayal, homicide, false identity, etc.

Today, Sunday, is more serene. I've talked to more people about my difficulty walking. My body has continued to support the decision to move from my apartment. After I spell check this entry and post it, I'll reach for the intake packet and start filling out my application to Maitri.

2009-09-03T21:06:00.000-07:00

September 3rd, 2009:

Eileen and I went to see Dr. Barani at UCSF Mt. Parnassus on Tuesday afternoon. His task was to take a look at me and see if my pelvic tumor could be radiated to shrink it for better mobility and pain control. Since this was the first time he'd seen me, and since my last CT and MRI scans were taken in May, no one expected any major decisions to be made that day. Walking into the hospital, I had a couple of creepy moments as I recalled entering the same hospital for chemo many months prior. Especially, I remembered what it was like to stagger out of the hospital into Gaetano's car for my ride home, racked with nausea, dizziness, weakness, fatigue. Then I stepped through those memories and headed for Radiation Oncology.

The visit with Dr. Barani turned into Radiology 101: An Introductory Course. Basically, he told me about what to expect from treatment planning to the impact of radiation on specific parts of my body. Starting with the overall procedure, he said that the treatments would be strong rather than weak and they would be done quickly rather than extended out over several weeks. His initial sense was that I would get a treatment every day, five days a week, for three weeks. Fifteen treatments in total. By giving me higher doses, he would also risk greater toxicity.

As for impact to the various parts of my body, I could expect the following risks to the following places. Radiation burns the skin so my pelvic skin would be affected and treated with gel pads to ease the stinging. This would last during the treatment period and for two to four weeks after treatment. There are no expected long term effects. Lymph nodes hit by the radiation would be damaged and this would affect their ability to cleanse my right leg with lymphatic fluid which would create edema (watery swelling of the calf, ankle and foot due to poor circulation). An open question would be how much the lymph nodes and their circulatory passages could repair themselves, or not. During treatment the bladder would send me the message--it's time to pee!--more often. Worst case would be a short period of incontinence whose solution is: diapers. In conspiracy with the bladder, my prostate would send urgent, frequent messages about urinating. Again, worst case solution during the time of treatment might be a Foley catheter.

The biggest risk comes from possible damage to the large and small bowel and rectum. Depending on how much the tumor has penetrated the walls of the bowels and rectum, killing the tumor cells would potentially weaken the walls of my excretory system. This could be truly dangerous and might involve surgical repair. Of all the issues Dr. Barani raised, this possibility was the most frightening, damaging and risky.

What happens next? I've been scheduled for an MRI mid next week and CT scans for my pelvis and thigh will also be scheduled. Once we have the scans, Dr. Barani will be able to give a more informed assessment. Once I hear his evaluation, I'll be able to make a more informed decision about what to do. Of course, I'd like to walk for many more months. After my experience this week of not being able to hobble for a block on a couple of occasions, I am starting to face not reduced mobility, rather immobility. It's is a very difficult prospect. I turn away from it after every short, incredulous realization. But, this is how I absorb really big fears: a blip at a time. Back in the worst days of AIDS, we used to call it Terror Management.

Note: I happened to read the previous posting and was startled by the number of syntax errors. I spellcheck these drafts and review them prior to posting them. Was I on drugs? It annoyed me to see the number of typing mistakes that crept into the text, especially toward the end of the posting. Quality control never stops.

2009-09-01T21:18:00.000-07:00

September 1st, 2009:

It's been a scary and confusing past few days. Without my noticing it consciously, my pain management safety net quietly unraveled this past weekend and early part of this week. I use Fentanyl transmittal patches that release an opiate into my skin over a three day period. Then I replace them. I've used Fentanyl for the past eleven months and it is my basal pain medication; meaning, the basic drug that I use all the time with no changes in dosage. There's a change when the tumor creates more pain at which time we adjust the dosage higher. That last happened a few months ago when I went from 150 mgs to 300 mgs. Typically, I stabilize with the new levels very quickly and stay at that amount for several months. If I have sudden, unexpected discomfort, I use Morphine Sulphate for breakthrough medication. One or two of these pills kick in over a 20 to 30 minute period, and the pain goes away.

Early last week, I was having trouble walking to lunch which is four blocks from my office, then I felt better in the afternoon. Later in the week, I was hobbling in the morning so I started taking two morphines before going into work, and I started using a cab to get to work after decades of public transportation. On Friday of last week, I ended up taking three morphines in the morning, three in the evening followed by a lovely, spirited dinner with my friend Sarah and her daughter Lindsay who were visiting here from Santa Fe and Los Angeles. Saturday started with four morphines in the morning and more wonderful time with Sarah and Lindsay who came to see me in my apartment. Sunday, four morphines in the morning, and a movie with Philip and Geol followed by fine conversation with Philip.

After Philip left, I thought about shopping for groceries. Based on how my body felt, I realized that I could not comfortably walk to the store which is seven blocks away. I'd never had that realization: I could not get myself to the store under my own power. It was just too painful to walk. Then I thought about going into work the next morning: I could have the cab drop me off right in front of my high rise and get breakfast in the coffee shop downstairs rather than pick up a bagel a block away. So that's what I did. Four morphines before I left the apartment. Meanwhile all these opiates are causing me to be uncommonly thirsty. Dry mouth from about 4 a.m. on regardless of how much water I drink during the night. Once a work, I cannot get comfortable. I have been grateful for these past months over how my office chair and desk height are set at maximally comfortable levels. Not on Monday. So I take the four morphines that I now routinely carry with me. After half an hour, I am feeling no effect. And I have no more pain medication on me. So I write to Lisa, my primary care physician and explain the escalation in my self-medication as well as the fact that I am not getting relief.

Then, I head home to get take more medication because I am seriously hurting. The pain is 6 or 7 on a scale of 10. Once at home, I take three more morphines (total of eleven in the past five hours) and lay down for a nap. Nap is what I do for the rest of the afternoon; sleep, and groggy interludes in between. I do everything but drool and I feel very drugged. My last cognitive act of the day is to write to Lisa and explain that I've taken almost three times as much morphine as ever before but with diminishing results. In fact, the results were dreadful: no relief and totally doped out.

Early Tuesday morning, Lisa responds, "Why don't you come into the office today. As soon as possible." One of the amazingly responsive aspects of her practice is that you can usually get an appointment on the same day if you have an emergency. So at 11:30 this morning, I am in Lisa's office and she's explaining the difference between basal pain management and breakthrough pain management. "When I hear you say that you aren't getting relief from your breakthrough pain meds, I know that means that your basal pain meds have failed you." So, she suggests that I increase my Fentanyl patches by two. Rather than applying three patches, I will now wear five.

That's what I do. I come home and add two patches to my left side. Within a few hours, I can feel the results. I turned out to be a busy day. I had the assessment for radiology on my pelvic tumor early in the afternoon, and therapy at 4:00 p.m. By the time I left therapy, I could walk up Castro Street with an easy gait that was unimaginable on Sunday. The subject we explored in therapy was how can I listen to my body so that I hear the shift in medication needs? On the one hand, it's subtle and I've never been through this before. On the other hand going from one or two morphines every few days to four or more pills in the morning is a gross increase that I was most certainly aware of. And there's always the ultimate reminder: pain. If I'm in pain, a profound change has occurred. My ongoing task is to stay alert to the shifts that my body tells me about. As of this evening, I feel much, much improved. My spirits are up, I'm excited about a couple of projects that are knocking on my door, I look forward to returning phone calls and emails. Most important, I don't hurt as my basic reality. What a difference good diagnosis can make. Thank you Lisa! Thank you.

As for the radiation assessment, that will be the subject for tomorrow's entry. Basically, good news although the procedure is not without some caution. But, details to follow.

2009-08-29T22:57:00.000-07:00

August 29th, 2009:

Over the past couple of weeks, I've been reading two divergent autobiographies: My Life in France, by Julia Child and A Tale of Love and Darkness by Amos Oz. It's interesting to meander through the lives of these two very different people while I'm also creating this blog which has as it's foundation, the autobiography of the end of my life.

Julia's story is about her liberation by the sensory. She's forty, a virgin and marries a man who's steeped in the pleasures of food, wine, the arts, the flesh. He understands that she has a deep ability to experience pleasure, and their early story is about how he awakens her at a fundamental level of savoring, tasting, smelling, evaluating her experience based what her body tells her. Once awakened, she trusts her destiny and works extra diligently to learn the techniques needed to purchase the best ingredients and learn the cooking skills so that she can replicate the sensational food that's available in French restaurants whether exalted or humble. Cooking leads to writing leads to her ability to project enthusiasm and teach cooking on television. Julia learns that her deepest passions are gifts that can be shared, and she is very generous. Her unfolding and expansion as a transmitter not only of French cuisine but also of a palate that appreciates culture is foreground to the dour Pasadena Republicanism of her father, Richard Nixon, and the turmoil that swept through the Cold War State Department that employed her husband. Fortunately, pleasure and good eating wins in this struggle. At least for the people who read, watch, listen to and cook with Julia.

Amos Oz has a more harrowing cultural legacy weighted onto his shoulders from a young age. Born into a family that fled Northern Europe in the mid-30's and moved to Palestine as part of the Zionist dream, the parents, relatives and friends that young Amos grows up in were vastly cultured, recently poor and totally unprepared for moving as assimilated or practicing Jews into the desert landscape of the Eastern Mediterranean. At the time of his youth, the Holocaust is in full roar although the dimensions of this disaster aren't fully apparent in the early 1940's. As a young man, he comes of age during the 1946 War of Independence and the creation of the state of Israel, a return of homeland after thousands of years of Diaspora. Oz's work traces how, as a child and adolescent, he navigated the deeply eccentric habits of his neighbors and family. The various levels of suffering by people unable to cope with emigration to Israel and yet with no plans to move anywhere else constellate around the ultimate rejection of living: at age 12 his mother commits suicide. The story of these European Jews in the first and second generation, carries the story of how Israel was populated by people whose hopes for a better life were often dashed by the experience of actually living in the real city of Jerusalem, not the golden city of Zionist dreams. As he grows away from his family and becomes part of the struggle to establish Israel, Oz also matures into a man who has witnessed the destruction of his family without being destroyed himself.

These two diverse and powerful authors work with different legacies of oppression to find a better way in the world. They embody cultural transformation. Their inner needs to have lives that include rejoicing and freedom to make choices push their destinies. It wasn't until this evening that I found myself venturing some comparisons between their achievements and this blog. There's the common ground of autobiography. My legacy is that after doing end-of-life care giving for some thirty years, I'm now facing the end of my life. That's the focus of the blog: how do I use the life I have remaining to prepare for dying? And what's being released in this awareness of less time to live? How is my life changing? What am I doing differently?

Those questions carry not only my own decisions and hopes, but they are set against a background of grim fear about the fact of dying. At this point, the blog becomes an invisible net where everyone who reads this starts to add their issues of apprehension, unfinished business, awe, denial, family legacy of dealing with death and much, much more. That's outside the perimeter of the blog but just outside. For everyone, the blog triggers their seismic reactions to death.

I see my end-of-life autobiography as holding how I've been inspired to express myself at a time when many people assume that expression shuts down. Today, my friend Philip was visiting and he said, "I admire your faith." He certainly wasn't referring to a conventional religious faith of any sort on my part. What I understood him to say was: You have trust in this process. You trust your body. You trust the larger universe that holds us. It was an honor to hear this, and I think that's the direction of this blog: it's about how I move out of this life with joy and all the other feelings that arise.

2009-08-27T21:34:00.000-07:00

August 27th, 2009:

For the past week or so, walking has become increasingly difficult. On Monday, as I began walking down Market St to lunch at the Ferry Plaza, my hip was really not wanting to move in any direction. It hurt. I tried walking slower, but still, the effort seemed larger and more ponderous than I'd experienced before. These days I always carry morphine in case I need break through pain relief. On Monday, I didn't take the morphine, I just kept walking. Bad idea. The pain did not let up for a couple of hours. By then, I had dosed myself with four morphine sulphates and presently, I felt a lot better. For those who have never taken morphine before, I can attest that it does not create dopiness. At least not for me.

This Wednesday, Eileen Lemus and I were at the UCSF Oncology Clinic for the first appointment with Dr. Jahan in some seven weeks. The only thing I had to report was the difficulty in walking and the increasing role of morphine for some days. He was totally supportive of taking morphine as much as needed. As he said: "That's what it's for." Meaning, immediate pain relief, when required. So, I will work with myself to be more enthusiastic about taking the pills. I know how much I like the results.

Additionally, Dr. Jahan asked if I'd be interested in talking with Dr. Alex Gottshalk, a radiologist who I had met last Fall when we were originally considering surgery for my pelvic tumor. "Radiology might shrink some of the tumor?" I asked. "And give you several months of relief," Dr. Jahan added.

Well sure! What possible harm in talking about getting more months of walking? That possibility of prophylactic radiation raised my spirits immediately. Dr. Jahan cautioned that radiology in the perineum and pelvis is extremely touchy because that part of the body is packed with vital organs and passages. I would not want to burn any tissue that would cause discomfort or damage during the last months of my life. Still, Dr. Gottshalk is a real pro. He and the other surgeons originally decided not to operate on me because the odds were too great that vital pelvic organs would be either removed or compromised. We are talking tissue that you don't want to try living without such as the prostate, the rectum, urethra, bladder, etc. It's not that those organs are infected with cancer, but they are so close to the cancer that the doctors would want to take them or parts of them as well. My quality of life would plummet. Don't want that.

This is the first time in six months that I've considered medical treatment, and frankly, I'm excited. I'll keep you posted about the visit to Dr. Gottshalk. For sure there will be new scans to determine how much the cancer has grown. Additionally, there will be the doctor's evaluation of what parts of the tumor he might radiate, which parts not. Or, as happened last Fall, he may send me home with no plan of tumor reduction. That could happen as well. But the hope to walk for more months is a powerful lure. Yes, yes, let's talk.

2009-08-26T21:49:00.000-07:00

August 26th, 2009:

In the past week, I've completed two major milestones on my project plan. This may sound a bit corporate, but knowing how to organize tasks is a skill that I learned in the workplace, and I'm happy that it serves me. The first effort was hosting the party for some 21 people at Maitri, catered by the chefs at Boulette's Larder. The second big completion was shooting the video of my final words to all my friends. Both events brought me new challenges and the resulting excitement of getting the job done.

To organize the dinner, I first needed to present my concept to the owner's of Boulette's. Part of their business model includes hosting private dinners at the restaurant for up to 24 people. This is the only time they serve dinner. I wanted them to do the cooking, but I didn't want to invite all my guests to the Ferry Plaza, much as I love the restaurant's location. A big part of my agenda was to get people who had never been to Maitri across the threshold. So, I made my presentation and explained that I'd be moving in to Maitri for my final days of health care. They responded. They understood my agenda. They agreed to bring their expertise across town and cook on site.

Then, I sat down with Amaryll, the resident genius of Boulette's cuisine to plan the menu. Doing my best to channel the dining spirit if not the food knowledge of my friend Margaret Hess, we started at the center of the meal. "What would you like for the entrees?" Amaryll asked. Scanning back through my palate's Rolodex of wonderful lunches, my first request was ivory Alaska King salmon. That brightened her up considerably. "Good! It's light, delicious and perfect for a summer menu. Plus I should be able to get it although it's the end of the season." Crossing my fingers that I wouldn't have to explain to my guests that the ivory salmon wasn't available, we moved forward. This time, Amaryll sang praises of the Becker Lane pork loin that she had access to along with Chez Panisse in Northern California. I'd been wow-ed by how savory this meat was in a salad not more than a week prior. Good, we had our foundation food. Moving to the beginning of the meal, we agreed to start with the best heirloom tomatoes topped with buratta so fresh it virtually drooped off the fork. Then the supporting vegetables and sauces for the entrees followed by citrus meringue tarts for dessert. A meal of intense summer flavors but without undue weight. Menu planning done in under 20 minutes.

The other part of the preparation involved meeting Amaryll at Maitri so that she could look at the kitchen and know that the space would work for her. She is such a pro. I walked her back to the Maitri kitchen and as she approached, she announced, "Oh, sure! This will be just fine." When I asked her how she knew that, she smiled and said, "Great stove, good prep areas. That's all I need. Plus someone to wash the dishes." And that was the bulk of the effort that I expended for organizing the dinner.

With the video project, my labor involved writing the script and then translating it for voice. Once the camera was rolling, I needed to read text on the teleprompter while translating my voice into a conversational tone. Amazingly, all of these learning curves were absorbed and accomplished.

Now, I look forward to a pause in big tasks for a while. One of the things that's been true of me for many years is that I identify with the work I do. Work has given me purpose, meaning and validity. However, I am more than the tasks I sign on for. And one of the best ways for me to explore and experience my non-work self is to lighten up on all my doing. I was talking with my therapist about this yesterday. I told her how much I wanted to steer clear of big projects for a while. There's still plenty of effort and organization that I bring to everyday life. I continue to go to work (for two more weeks!!), I still brush my teeth, cook, clean, etc. I'm not walking away from from the maintenance tasks that can be so detailed and worthwhile. But there has been a lot of creative effort recently, and I'm ready for a break.

2009-08-25T20:10:00.000-07:00

August 25th, 2009:

Today, Beth Pielert, my personal filmmaker, and her crew came over to shoot the video to be shown at my memorial service. I had worked on the script for five or six weeks, drafting and enlarging the text until it seemed comprehensive. The intention of the film is to tell people what I feel that I've learned in this life. Also, why I wanted to learn it. What old habits and beliefs I wanted to unlearn, and new connections that I wanted to make.

I could not have written this material a year ago, nor would it have occurred to me to launch such a project. A year ago, my only problem was getting through my upcoming right hip replacement. But in the past few months, I've taken a radically different view of my mortality as well as my understanding of who I am and what I incarnated to accomplish. Given this shift in identity, the script for the video seemed easy to write.

However, once the script was on the page, it was still written narrative; meaning, people don't talk that way, at least I don't. Then the task became to convert the writing into spoken sound. This involved reading the sentences out loud. When text sounded clunky and awkward, I'd rewrite it to accommodate the voice. After a few passes, the new script had a vocal life that carried the context but didn't sound like I was reading from a book.

Three weeks ago, Beth came to my apartment and explained how the filming would proceed. She suggested that I read my material from a teleprompter which would be a new experience for me. I quickly agreed since another option was to memorize three plus pages. Another option was to free-form my talk based on key concepts; that didn't feel like it had enough structure for me. With the teleprompter, I agreed to read the material from start to finish, twice. One reading in close-up and the second reading at a distance. Additionally, she'd take the camera through my apartment, filming the rooms with their glass, textiles, rugs, etc. Being a novice to film, it came as a surprise to me to realize that shooting the raw film was step one. In step two, she'd edit the film to do voice over, selecting the best angle and the most compelling reading voice and other techniques that make her a talented filmmaker.

At 9:00 a.m. this morning, the crew arrived and lugged up the cables, lights, monitors, voice equipment, cameras etc. The set up took longer than the actual filming, but that's because Beth had a very clear idea of what she wanted for sound, clarity of image and other details that I don't even know about. It was fun to hear the crew speaking the in foreign language of film; so many terms, expressions, jargon.

Then, time to start rolling. Laura who ran the teleprompter did a very fine job of making sure that I had plenty of text to see on the screen. My task was to avoid reading the text as if it was a book. Instead, I had to learn in a flash how to make the text sound as if I was speaking conversationally. Here's how that was accomplished. In front of me was the teleprompter screen with the scrolling script. Behind the teleprompter was Beth, working the camera. But I couldn't see Beth. All I could see was the teleprompter screen. "Talk directly to your friends," Beth and Laura advised. "Imagine that you're speaking directly to people you know and love. You wrote this text from your heart. Connect your heart to their hearts."

And it worked! As I started to read, I sensed people on the other side of the teleprompter. I didn't consciously select them, but there they'd appear for a while, then they'd fade and someone else would take their place for me to tell my story to. There was never a crowd, usually no more than two or three at once. It amazed me. Some of my listeners had died years ago, others were at the Maitri dinner last week. And so it went, a slowly moving parade of people I love who stopped in to listen as I told my story. As I connected with my deepest friends, my voice calmed, the words became clearer and easier to understand. The delivery worked. After two passes through the text, Beth announced that she was not only satisfied, she was happy with the results. "You got me toward the end, George," she said. "I had tears."

So, almost an hour of raw footage now sits in the camera. Next stop: editing, the cutting room floor and the integrated video. What an exciting project this has become.

2009-08-22T23:09:00.000-07:00

August 22nd, 2009:

After the first hour at the Maitri dinner on Thursday night, after people had had a chance to meet each other, take the tour, watch the video and move into the dining room for dinner, I took a moment to welcome everyone. It wasn't a planned speech that I gave, although I knew where I wanted to start.

"I want to welcome all of you this evening to Maitri. I've invited you here because I want you to have an opportunity to visit my new home. I'm not moving in yet, but I will move in. It's a wonderful place, and it matters to me that you experience these rooms now, before I become a resident."

And then, I went off in a direction that still surprises me and has given me a lot to think about. The rest of the welcome was totally unplanned, but expressed a part of me that wanted voice.

"When I bought the Glen Ellen property with Ann, I looked forward to remodeling my home there. I had never crafted spaces and rooms. I'm used to decorating rooms, but shaping space is different. I found that I have a hunger to do this. It's a whole new direction of creativity for me. At some point in feeling the remorse of knowing that I would never alter the Glen Ellen house to the vision I had designed, I realized that over a decade ago, I had helped to architect the plans for Maitri. I sat on the Maitri committee that worked with the architectural firm to define the blueprints for our new residence. I went through the agony of realizing that we couldn't have a roof garden because we couldn't afford a quarter million dollars for an elevator to go up another story. I participated in the brilliant agreement to shape all rooms around a double atrium bisected by a diagonal glass hallway. I agreed with the design that brought light into every resident's room. That's part of the genius of Maitri, there's lots of light."

As I found myself getting into the history of being on Maitri's architecture committee, I could feel a holographic shape of the residence in my chest, sitting comfortably inside me like a little scale model of the actual building. All of a sudden, it seemed very important to have had an active role in building my final home. Why? Somehow, knowing that I worked on Maitri's floor plan makes it easier to live here. I helped configure the place, and now it's like being in my body which I cherish.

One of the reasons this is so surprising to me is that I've never been terribly interested in building my own place until fairly recently. My first few years growing up in a suburb of Portland Oregon was followed by moving into the large country house where my parents resided for over fifty years. Although we took great care of this house, we never remodeled, added on, subtracted or did anything other than maintain its good condition. When I moved to San Francisco, I lived in apartments and again, took good care of them but never added a coat of paint in the years I lived in one place or another. Finally, in my current apartment, I did paint the walls the whitest of whites to set off the art work and installed track lighting. I realized that I felt comfortable living in an art gallery and that's what I got.

But with the Glen Ellen property, I needed to make decisions about improvements. I read a couple of books that said: talk to the place. Ask the ground and the walls and the roof and the windows what they wanted to become. Work with the building and listen to its yearnings. What a fascinating process! After my cancer diagnosis, I put aside any plans to improve the house before my death.
But there, waiting in the background, was the work I had already done with Maitri and the architects who guided our planning effort. I had already been part of a group that spoke to an undefined space. We had already moved bedroom spaces here and there for maximum effectiveness. We had worked with numbers of bathrooms, location of offices, size of dining room.

As I reflect on the deep importance of moving into a place that I've helped design, it's clear to me that there are some odd features that now make total sense. Foremost, it didn't occur to me that I'd be moving into a group living residence this early in my life. I didn't plan on moving into a residence dedicated to people with HIV. I had no plan to scale down to a small bedroom and jettison most of my rugs, glass, photographs, textiles, clothes, paintings. And yet, I'm delighted with all of these changes. I look forward to moving out of my art gallery into a more quiet zone. Yes, there will be some art but not a lot. Plus, I'll have new focus in my new home. There will be people all around. I'll have a TV and a DVD player for the first time in my life.

But most important at this point is the sense that I am living in a place that I helped to envision and build. That has huge consequence for me, and I had no idea of any of this until I was standing up in the dining room at Maitri last Thursday evening, welcoming people to my new home.

2009-08-18T21:23:00.000-07:00

August 18th, 2009:

On Thursday evening, I'm hosting a dinner at Maitri for 21 people most of whom have never been to the residence. As my life has moved from middle age to later, I have increasingly stepped back from entertaining other than having maximum two other people at my apartment. I don't host dinners although I love to cook. I don't invite a group over for stand up visiting. My excuse has been no formal dining room, but that sure doesn't get in the way of other people I know.

While I was growing up, my family enjoyed party-giving. My Mom was a fine cook and whether it was outdoors in the summer or indoors through the rainy winters, she loved to invite other families or groups over for dinner. And we often were invited to dinners and occasions with other families. During my group living with Stu and Cris in Portland we did a lot of our communal bonding over food and used the meals to explore the Pacific Northwest bounty: chantrelle mushrooms, fresh salmon, etc. Plus, we started a tradition of legendary Seders for Passover. Food and intimacy were well established for me.

However, when I moved to San Francisco, I scaled down in the numbers of people I invited into my various apartments. That's when the one to two person limit started. Plus, I got swept up by the tsunami of exciting restaurants on both sides of the Bay. It was much more gratifying and theatrical to order off the menu at Chez Panisse or Masa's than anything I was likely to muster at home. So cooking became a private event and my talents were focused on that most difficult of accomplishments: cooking for one.

As an adult, I've always felt comfortable in the kitchen. I love the prep, touching everything and smelling it before heat changes the texture and aroma. I typically review a recipe the first time I cook something and that's the last time I follow directions. Once I've cooked something, it's in my body memory and I start improvising. As a result, I am both reasonably fearless and highly limited; meaning, I don't look at a lot of new recipes so my repertoire is held back. I have good manual skills, but have never taken the next step of going to cooking school where I could really expand my dexterity with food and utensils.

So out of the blue about two months ago, my friend David Goldsmith suggested that I host a party where I get all of my friends together. He said that he'd been hearing about all these people I know for years, but never met any of them. As my health declines, he wanted to know who else would be involved in my care. I have to say, my response to this was really churlish. I thought, "Sheesh, it's not my job to organize a support group. I'm moving into Maitri where I'll be cared for. It's everyone's responsibility to have their own support. I'm busy. I don't wanna." Something like that. I was not receptive to his suggestion.

A few nights later, I was having dinner with my friend Traci Teraoka who I'd served with on the Maitri Board. "If you're going to move into Maitri, why don't you have a dinner there for your friends before that happens?" she suggested. I listened and thought, "What's knocking on my door here? Two pushes for creating a group in one week." Although I eagerly initiate one-on-one contact with people and have a vigorous schedule of lunches and dinners, I have never exercised my talents for gathering groups together. For groups, I expect to be invited.

As David's request rubbed against Traci's suggestion, I rethought my posture. Why not do something new? If I were to have a dinner what would be the pretext? And who would I invite to cook the meal? Answers were immediate. I wanted to mix two groups of friends. First group were my inner core of caregivers such as Eileen Lemus, Ed Joy and Gaetano, people who I've asked to handle my medical and financial affairs. The second group were people that I wanted to visit me at Maitri once I move in, but who had probably not been to the residence. The dinner would be a celebratory time prior to deep decline in my health. We would be at Maitri but none of us would be overwhelmed with my illness. Everyone could hopefully step into the beautiful environment, enjoy the vibes and not be overly stressed. As for the chef--no contest--I wanted to ask Amaryll Schwertner whose cooking at Boulette's Larder had been knocking me out for the past two years.

And so it has come to pass. This Thursday, 21 of my friends many old, some new will converge at Maitri for an hour of stand-up meeting. Then we'll proceed into the dining room for a very fine meal. I would have invited many more people, but the tables had a limited number of seats. I am looking forward to this evening in so many ways. I know from personal experience that when an interesting collection of people gather, chemistry happens. David will get what he wants. I'll have fun. Other people will have a chance to say, "Oh, I've heard a lot about you..." And off we'll go.

I was talking with my therapist today about the creativity that has been surging in me since I started to accept my terminal diagnosis. I've been on the Maitri Board for many years now, and I've been to many Maitri dinners. During all those years, I've adamantly refused to organize a dinner myself. Didn't want to do that at all. Now, I've changed my posture completely and feel wonderful for it.

2009-08-16T22:34:00.000-07:00

August 16th, 2009:

After being back in San Francisco for a couple of days, I'm thinking back to my trip to Portland with it's many highlights and unexpected directional signals. In no particular order, here are some of the most memorable times on that important trip:

Sitting no more than two yards away from my father in his apartment and listening to him tell me with no filters and full heart: "I love you so much!" Sitting there and believing him tell me this after waiting some sixty years to hear it. How lovely! The strength and purity of my Dad's conviction really came through. We talked about whether this would be my last visit and if I would ever see him again. By the end of the trip, I felt secure that I would be able to return at least one more time to visit him.

Going into the Eighth St. Grille in Portland's Pearl District with Willem, his mom and his godmother Christine. Once Willem had been seated in his high chair, this kiddo who is a couple of weeks shy of two looked at the waiter and said, "Grilled cheese, please!"

Getting ready to head out to the Farmer's Market for some produce shopping one morning and realizing that my right leg and pelvis really hurt. The prospect of walking around in downtown Portland seemed very daunting. I realized that I didn't have the stamina to go into the world that morning, then I became overwhelmed by the possibility of not being able to walk some day soon. I felt like I was heading into a dark future. What a cruel, abrupt stop after a lifetime of hiking, strolling, walking, ambling, etc. No more leg power. I cried while being held by Kris. That's what I needed: comfort and empathy. I stayed home that morning, rested on a chaise lounge overlooking Portland and watched a remarkable cloudscape for an hour or so. I rested, my body unwound from the pain and tension, and by the afternoon, I was fine. I guess that's how I'll accept whatever my body does with the growing tumor and other debilitation: have moments when I open to the fear and then ease back out. As with having anticipatory grief, this is anticipatory fear and acceptance.

Portland was so generous with people. I spent time with people I've known since I was a little kid. People including Jacob Avshalomov who conducted the first concert I ever went to back in 1952. John Baker whom I've known since I was six and who has been such a comrade as a friend and fellow gay man. Tom Talbot who I went camping with as a boy scout, and anticipated sitting next to every morning on the bus to high school. Leonora Guinazzo, my Spanish teacher in high school who virtually insisted that I start exploring the larger world outside America. My college friend Jolly Butler who has been such a fine companion intellectually and emotionally for the past forty years. Cris Maranze and Stu Levy whose cultural gifts were as wide-ranging as the history of great photographs and the song book of The Grateful Dead, and who taught me that roommates could also be soul mates (if you were really, really lucky).

It was good to travel back to the city that nourished me for the first thirty years of my life. It is so green, so beautiful, so placid and also full of purpose and health. Yes, I would like to go back very, very much. At least one more trip, please.

2009-08-14T21:04:00.000-07:00

August 14th, 2009:

Next time I go away for a few days, I will be explicit about when I leave and when I return. It was both touching and startling to return home from Portland last night to numerous messages from people wondering if I had moved deeper into my illness. I'd been on a tear with the blog at the beginning of the month and then, with no big warning, the postings stopped. Ten days of silence after a lot of loquacity. Yes, I am fine. Yes, I was out of town. No, I don't have a laptop, and I didn't post any entries while I was on vacation. Thanks to all you you--those of you who expressed your concern, and those of you who knew that I was away from my computer.

As several of you requested, there will be a formal handover of the blog at some point when my ability to post does degrade and evaporate. I would like for you to have continuous updates about my health. However, I hope that giving this site to another writer is a long way off.

Although I'll say more about Portland and the many highlights of the visit, I would like to summarize the trip now by saying that I flew North to say good bye to all my friends up there. People I'd known since grade school, my Dad and little Willem who is not yet two years old. I thought it would be hard to see everyone for the last time, but I didn't want to shirk the responsibility. One thing I have learned from almost 30 years of end-of-life care is how to say goodbye. However, after a few days, it became clear to me that this was not the farewell tour. Rather to my surprise, I knew with increasing certainty that I would have at least one more trip in late September or in October. I could be wrong, but my certainty was such that I told several people--my Dad, my friend Jolly, Willem's parents--that I would be back. I felt like I could make that commitment. What a lovely surprise!

And now, for a wonderful vignette from the beginning of the trip while I was flying North and looking out of the window of the airplane onto the slopes of Mt. Shasta. As I stared down onto the snow fields and remaining glaciers, I remembered back to August 24th 1987. I had gone to stay in Mt. Shasta City with a meditation group I belonged to at that time. We had traveled to the mountain to celebrate the Harmonic Convergence, and we were there with hundreds of other New Age types, hippies, visionaries and others willing to harmonize. On the day of the convergence, over breakfast, we decided to climb the mountain. By 10 a.m. we had set out in our tennis shoes, driven to the top of the ski valley parking lot and started on the trail head to the summit. We kept a steady climbing pace, stopping for lunch and then continuing upward with remarkable determination.

At around 3 in the afternoon, we reached an enormous ledge covered with huge boulders that had melted out of glaciers. To go further would have required climbing gear which none of us had. Although we were certainly light-hearted, we weren't foolish. We accepted that we'd climbed as high as we could. We decided to have a siesta and then start our descent. Quickly, we all found places to nap for a bit. My choice was a huge rock with a chaise-like curve to rest in. I climbed aboard and promptly fell into a deep sleep.

I awoke in a state of total bliss, staring into cloudless blue sky and permeated with knowing that throughout the universe, everything was love. Love. Just love. Everything that had form or space between form held love and was love. I knew this was absolutely true, and I would guess the experience lasted for several seconds. It wasn't long. But it was enough. And then, particulars started to press onto me. I could see the edge of my visual field. I realized I was looking at the sky with my eyes. That I was lying on a large rock. That there was wind. And birds in the air. And arms that I could prop myself up with. Slowly, I came back into my body's awareness, but without loosing the certainty of what I had just experienced.

We assembled. All of us had felt something extraordinary during that rest time. We gathered into a circle, gave thanks as a group and started our descent. Flying over Mt. Shasta last Saturday, I looked for the shelf of rock on the West side of the mountain, the platform where I had received the most inspired awareness of my life. Couldn't find it from the airplane window. No matter. It was fine to have reconnected with that pivotal event in my life as the plane continued on to Portland.

2009-08-04T22:56:00.000-07:00

August 4th, 2009:

At three this afternoon Eileen Lemus and I met each other going into Maitri and we proceeded up the stairs to start my intake interview for eventual admission. We met with Daniel Hill the Intake Coordinator and Grace Molyneaux, the nurse who manages the medical side of the residence. One of Maitri's treasures is the meditation room, a beautiful place filled with art from many sacred traditions and a fine outlook into the garden. That's where we settled in for our time together.

There was a bit of adjustment as I put my role of ex-bedside volunteer and current board member off to the side. I presented myself as a person with cancer who would be needing hospice level care in the upcoming months. I'm happy to say that a major success of today's visit rotated around that shift in roles for me. I've had practice imagining leaving a home in the past few months by starting with closing down my fantasies of a life in Glen Ellen. Now, without force, I've begun to visualize myself out of my apartment and into a room at Maitri. However, I lacked concrete images. I go to Maitri for board meetings and parties. The last time I was in a patient's room was late at night, and Percy was actively dying. He got all my attention. It didn't occur to me to look around and wonder what it would be like to live in the room.

Grace suggested that after we'd had a chance to talk, we visit a couple of the rooms where resident's were out for the afternoon. It really mattered to me today to get a physical sense of the space I'm going to move into. Then, into the intake process. We walked through what Maitri needs from me now: my medical records, my durable powers of attorney. They explained that I should alert my insurance about my need for hospice benefits. We talked about how emergency pain management would be handled as my health becomes more fragile. My health care team of primary care physician, oncologist will expand to include the Maitri medical staff and a pain management specialist from Hospice By The Bay. Eileen had some excellent questions about how the rooms are configured. Answers include: each resident has a private room although two rooms share a bath and toilet. Shouldn't be a problem for me. I've had very successful group living experiences in my life, and I've liked sharing a home with most of my partners over the years. Well, not all of my partners, but most of my partners.

We talked about moving into Maitri when I'm still ambulatory, and clearly this is the biggest unknown. There's no way of anticipating given my health today what will trigger my need to leave this apartment. However, when that need arises, then there will need to be some serious coordination. I am so glad that I've already assigned away my possessions. I'll have a transition where all my treasures pour out of this apartment to their various directions. Hopefully that will be a process where I can participate. Also, hopefully, there will be an available bed at Maitri. If not, then I'll go to another facility for a time before moving into my final room. Of course I'll be able to take provisions for this last move. A good chair for my friends to sit in when they visit. A laptop to stay in communication electronically. I now have an iPod that Ruth thoughtfully gave me to store the music that will sustain me. I'll get to buy some new clothes such as pyjamas and a robe. I can bring a few pictures and maybe a textile or two. Rugs? Probably not. Point being, there will be a major whoosh as most of my possessions veer off and I am left with a lightness that's appropriate and desirable. I have always enjoyed divesting even as I was collecting.

We finished up with the paperwork and started off to the field trip of two rooms. And at this point the magical moment of the visit occurred. On the way to the first room we passed a nurse's station and there, sitting on a couch was Stephen, one of the residents. He had a nice light about him, frosted hair and an elfish sense of humor. As I introduced myself, he told me that Maitri was a wonderful place. I easily agreed with him. Then he asked, "What are you doing here?" Without thinking, I replied, "Well, I'm auditioning the place. I hope to move in here, so we're going to look at a couple of rooms." He seemed a bit stunned. "You are going to move in here?" "Yup," I replied. "So if you're here too, we can get to know each other. That would be fun." "Yeah!" he agreed. Then, goodbyes were said and we moved on to the room visit. Daniel was astonished by that exchange and said, "I can't believe you did that. I was about to introduce you as a board member!" "Well," I ventured, "Coming out as a wanna-be resident seems more appropriate today. I hadn't realized how much I've already accepted this new identity as someone who will live at Maitri."

For the record, the two rooms were just fine. They are spacious, and I felt immediately comfortable knowing that there would be plenty of space to spread out and settle in. I will say it again: it's an immense relief to know that I will be cared for by people I know and love. As my physical self declines, it's an extraordinary luxury to have such quality of life supporting me. As my friend Ulrike said in a recent letter, "You know, your body may be dying, but your awareness is not." Yes, yes, a thousand times Yes to that truth about my life.

2009-08-03T20:05:00.000-07:00

August 3rd, 2009:

I had no particular plans for what to write about today until I heard myself musing about various remorses and losses weaving through this time. That's become an accelerated part of my life in the past weeks. Right now many people I know are in Santa Fe at the opera, and in a normal year, I would be there too. And in a couple of weeks, I had plans to go to Seattle for the Ring. Not this year. Not ever again. No more live performances of the Ring for Geo. As I was riffing through my inventory of giving up, I kept circling around a particularly keen loss. I am struggling with not having a chance to help raise my godson Willem. That's been the magnet for my attention today.

Not being a living, active godfather to Willem has an unexpected sharpness and poignancey that surprises me each time I feel it. Perhaps because I never created any solid plans for having children--although at one time in my life I was an expectant father--I had put to rest my thoughts of being a parent several years ago. During my past life regressions, it helped me to learn that I'd been a nurturing, happy parent many times. Even today, I can go to that place in me that loves children and knows how much I love to raise them. After Willem was born, I went over to meet him and I have to say, I arrived expecting to be charmed and to celebrate that he'd arrived. I had no idea that he would immediately exert such a powerful hold on me. I did not expect to feel so personally attached to him. How could a month old baby do that? In this case the answer was: easy.

When his parents Kris and Darius asked me to be Willem's godfather, I was deeply honored. How exciting to know that I would have a place in this child's life as a spiritual advisor and guide. For the first months of his life, his godmother Christine and I would visit him once a month for "Willem night." Willem would play with us for a couple of hours at the beginning of the evening before going off to sleep. Then the adults would join together for dinner and talk about Willem. Always so much to say about his growth, his special characteristics and emerging individual self. Since Willem moved to Portland around the time of my first chemo treatment, I have only had a chance to see him once when I went up for my Mom's memorial service at the end of March. At that time, Willem had grown hugely. He'd graduated from crawling to walking. He had started to speak enough to point out the window and say "squirrel" when a gray squirrel ran across the lawn. That seemed quite brilliant to me.

As I'm writing this, I'm realizing how I keep Willem alive in my apartment in San Francisco by putting up pictures of him here and there where I am likely to see them. For all the joy that I feel by looking at him and reminding myself that he is here, I haven't done much planning about our future. I haven't fantasized about what I'd like to offer him as the future unfolds. That seems like an appropriate reaction, given that much of my work in the past months has been to drastically scale back my expectations of how much time remains to me.

The sharp "Ouch" that I mentioned in the beginning of this entry comes from being certain that I know Willem. I know him and I love him and he's arrived in this life just as I'm about to leave. I want more living time with him. I want to teach him things I know, and I want to learn from him. I want to be dazzled as his character and talents and hopes emerge. This is not going to happen. What will happen in the next days is that I will fly to Portland and have another visit with him. It will be such a comfort to reel in more time with him and give my time to him. That's what I can do in the short term.

Even though he's one of the newest people in my life, Willem is already teaching me huge lessons. Like how to love and let go. Recently, several people have said that they are having a hard time with the fact that I'm dying because they don't want me to leave their world. At first, I was honored by the sentiment, but I didn't deeply get it. Now, via the poignancy of realizing that I will not have time and experience with Willem, I understand that feeling much more closely.

2009-08-02T13:51:00.000-07:00

August 2, 2009:

I had a very social yesterday where I reconnected with three important people in my life who I hadn't seen for too long. No misunderstandings between us, we were all busy off in other directions for the past couple of years. In both instances, I had a chance to appreciate my current position of managing my health.

The first visit was with my past life hypnotherapist Marilyn and her husband Frans. In the past weeks, Marilyn and Frans had heard about my cancer diagnosis and had the opportunity to catch up via this blog. They invited me over to their home in the Oakland Hills for lunch on what turned out to be a very fine, sunlit day. Frans picked me up at BART and as we were driving to their house, he said, "It's clear from seeing you right now that you know what you want for yourself." I was startled by how much I enjoyed hearing this. There is a part of me that is hungry for approval and support right now. It's not just about being validated for my choices, but also the trust that I am able to take care of myself under difficult circumstances. True, I hear this from most people who I'm in direct contact with. I also found myself reflecting that I am grounded in my knowing most of the time, but I also have times when I don't know what I wants and times when I'm totally open about changing my mind.

Once at their home, I settled into a long-overdue visit with my hosts. They caught me up on the psychic work they'd recently pursued, travel plans and their ongoing life together. Then, we spent some time in trance where they placed their hands on my chest, invoked energies and gave me a very fine healing that warmed me physically and psychologically. During this silence, I felt how much I've been avoiding just letting myself experience the pain of this time. Not so much the physical pain because that is well-managed by my medication, and frankly, I don't think my life would be improved if I felt that in all it's force. Yes, I know my pelvis can generate suffering, but will I be a more integrated person for giving up my opiates? Probably not. Rather, the emotional pain of letting myself grieve and rage. It still amazes me how much my early learning to hold those feelings in has maintained during this illness.

Afterward over a very fine lunch in their garden overlooking downtown Oakland, the expanse of the Bay and the panorama of San Francisco, I told Marilyn how much I was looking forward to do more past-life work with her. I'm glad to know that we can start in the early Fall when I have the time and they are back in the Bay Area. Past-life regression has been such a valuable source of information for me about this life. And this is certainly a time in my life when I feel more curious than ever about how I am dealing with issues that originate not only in this current existence by prior as well.

Home in the mid-afternoon, I had time for a nap before my friend Garrik arrived from Sacramento with his Mom. I met Garrik on a flight back to the States from London in the late 90's. As he said, "We were high from the moment we met," meaning at least 38,000 feet in the air. Born in Odessa, Soviet Union and raised in Moscow, he came to the West in the early 1980's, studied Chiropractics in Germany. Eventually he located in Sacramento and built a practice for his healing talents. I've always admired his ability to thrive and contribute in many cultures.

As I caught Garrik up on my history of getting a diagnosis, going through chemo and going to the other side of the pendulum swing by visiting the Optimal Health Institute, I moved to the part of my story where my body told me in late April that I was on my path. My path wasn't to end my tumors growth, rather my tumors would lead me into creatively spending my last months well for myself and for others. I explained that currently I was receiving no treatments and that I had a very high quality of life. This will not last forever, and for now, the quality is very high indeed.

After dinner with Garrik and his Mom, I returned home to settle into being alone. What came to me after a day spent with three healers all of whom have strong opinions and beliefs about helping people be cured from illness is that I am following a path that's been revealed to me. Interestingly, I regard myself the way I was taught to treat my end-of-live care clients when I learned bedside care in the early 80's. I offer no medical solutions to myself because I haven't studied medical solutions. I make room for my body to reveal the stages of illness and health. A month ago when a tumor fractured my rib, the message from my body was that I have bone cancer. After immediate relief from anti-inflammatories, I've had no treatments. This brief emergency has been followed by a long, much-appreciated plateau of health, well-being and productivity. I heard Frans' words, "It's clear from seeing you that you know what you want."

True, there are things that I know that I want. This past week in therapy, my therapist suggested that since there's such intensity of learning going on for me now, we accelerate our sessions to twice a week. She proposed that it would be an opportunity to focus more on the messages from my body that are so hard for me to hear and the feelings that carry those messages. After a lifetime of learning how to avoid hearing my body and my feelings, we can work to open up those channels. So yes, that's what I want more of: more access to the voice of my body and the voice of my feelings.

2009-07-31T21:47:00.000-07:00

July 31st, 2009:

Next Tuesday, Eileen Lemus and I will take a trip to Maitri to participate in a pre-intake interview. We will meet with Daniel Hill, the intake coordinator and Grace Molyneaux, the staff nurse who runs the medical side of the residence. I hope it's many months before I am ready to move into Maitri. However, I do have questions right now that will help me prepare for my final home. I last did regular bedside care at Maitri in 1995, back when the residence was located on Hartford St. and had six beds. Since moving to 410 Duboce St. the facility has grown to 15 beds.

Although I've been on the Maitri Board of Directors for the past thirteen years, I have spent little time in resident's rooms. Now that I'm going to become a resident myself, my curiosity is piqued. What will be in the room when I arrive? A bed, a chest of drawers, for sure. Maybe a chair and maybe a TV with DVD player. If they aren't there, I will bring them myself.

Also, I want Maitri's intake personnel to know about me. That will involve catching them up on my medical status, giving them access to my records, contact numbers of my doctors, etc. Again, I don't plan to move in anytime soon, but I do want Maitri to know that I am heading their way. Also, I know that Eileen has a lot of questions about how the facility operates and what I can expect. She has also served on the board, but still, board work and the daily life of a resident are at ends of a continuum of care.

My body will determine when it's time to move from my apartment into Maitri. The word from both doctors, Lisa and Dr. Jahan is to move in earlier rather than too late. I'd like that; meaning, I'd like to have time at Maitri when I'm still reasonably well. There's a daily and weekly rhythm in the residence that can be best appreciated by someone who's ambulatory and eats their meals in the communal dining room. The social life of the place is a big part of it's success. It's a healthy and safe place for residents to interact. And that is part of my plan. I'd really like to move there and step into the Maitri world.

My model in this is role is a terrific fellow named Percy who served as the chief Certified Nursing Associate (CNA) for many years. Unfortunately, Percy's advancing HIV illness compelled him to retire, but fortunately, after a few months in retirement, he moved into Maitri for end-of-life care. Wow, was he taken care of. The staff had never had the opportunity to take care of one of their own, and they were humbled by this opportunity to give back to Percy. Initially, there was concern that Percy would return to Maitri as a senior caregiver. But no. He totally changed. Rather than giving orders, he let himself be cared for by his peers. It was astonishing: all his knowledge about how to run the floor dropped and was replaced by his willingness to be loved and attended to. That's my model. I have no inclination to make board decisions from inside my bed. By the time I move into Maitri I will have left the board, and stepped into a brand new identity: resident-in-need-of-care. My task will be to let myself be cared for.

Prior to that new role from within a bed, I have my current identities which include the following. For another month or six weeks, I am still a consultant in Information Technology in the Financial District in San Francisco. I live alone in my apartment and happily cook, clean, and generally maintain myself. I'm a homeowner in Sonoma County who is selling his portion of the property to his land partner. I'm a 62 year old man with metastasized cancer to lungs, liver, bones. I'm a gay man with a well-developed aesthetic, special attention given to Baroque and 19th Century opera and Central Asian textiles. I'm a lucky guy with a lot of friends. I'm grieving the loss of my Mom who died in March of this year. I am on the board of Maitri Compassionate Care residence for people with HIV. I am an astrologer with a developing interest in other psychic teachings. Many identities, many of which will start falling by the wayside over the next months, only to be replaced by the new identies, some of which will jump aboard when I move to Maitri.

After the interview on Tuesday, I'll report in about the results.

2009-07-30T19:59:00.000-07:00

July 30th, 2009:

Today marked a major turn in my life: I announced that I'd be leaving the workplace. My first jobs where I did something defined and was paid for it started when I was 10 years old. I mowed lawns for neighbors, and then graduated to splitting cords of firewood and heavy-lifting yard work. In high school and college, I worked in a bakery where they made what we'd now call artesian french breads--no preservatives, wonderfully fresh--primarily for restaurants. Initially, I cleaned bread pans and swept the floors (flour everywhere, aughhh!), and I graduated to the packaging department and eventually becoming a baker while in college. Since that time, I have never baked a single loaf of bread. I still enjoy the aromas and variety of flavors in bread. But I was done with baking at a young age.

The occasion for this announcement was that my job administrator at PG&E where I consult asked when I would finish my current project and when I would be ready for my next assignment. I said that I'd be finishing up my current task shortly after Labor Day, and no, I would not be looking for more work. Typing those words: "no more assignments," raised some fear. After working all my life, employment has become a big part of my identity over time. Now, I'm setting aside that identity. I sat looking at my computer screen, thinking for a few moments: maybe I ought to consider this for a day or two. Then, I hit the button. My mind isn't going to change in the next few days.

This is a particularly fine time to leave. I will have completed my greatest and most accomplished effort. I will have written the book, as they say. So, what's the book? In this case, it's the "How To Guide" for Project Managers at PG&E. When I started consulting this time at PG&E, they were just recovering from bankruptcy and related confusion. They had agreed to play by industry rules of software development. They had adaped a new methodology of how to develop software. Also, they'd customized software for managing individual projects. The new development process and new management software had been dovetailed so that if a part of the project had not been completed, you couldn't move forward. This meant that each project became responsible for actually completing the many required tasks. I wrote the book that explained how to set up a project, assemble the team, use the project plan software to manage the effort and move forward through the life cycle into installation. Except. Except the financial management portion could not be written because it hadn't been clarified. Hard to manage a project without tight financial guidelines. Nevertheless, I finished the work I could do and went off into other regions for over a year.

Happily, a few months ago, I suddenly had a lot of time at work so I contacted my old boss on the Project Manager's Handbook and asked him if there was any work that could be done. He immediately replied that he had just been given the green light to finish the financial section, and if I was available.... So now I am writing up this rather complicated capitalization and expense arcana. It will go into the very center of the Handbook and the entire effort will be complete from pre-project speculation to post implementation maintenance.

During almost 30 years in data processing, a huge piece of work for me was to overcome my fear of being stupid, not smart enough, less useful than others. Especially in the beginning, much of information processing focused on coding. Programming. And that's something that I have never learned how to do. I have sat for hundreds of hours in meetings trying to understand what people are talking about. Of course, I learned much over time. I came to appreciate my role in a very complex dance of talent. I contributed clearly written prose. I translated from technical-ese into English. Whether I was tech writing, developing training, testing, or doing business analysis, my tasks involved writing. And I love to write. So I've had many years of doing work that I could appreciate, with a growing sense of worth. And a lessening sense of no worth.

In the next few weeks, I'll complete the heart of the "How To" manual for the business I've worked in for three decades. It's a lovely completion, and I am very glad to go out on this high. And then? What will I do with the time that's about to open for me? At this point, I'm not sure. My body willing, there's still the opportunity and time to travel. If I feel as good then as I do now, then a trip to Italy or China is definitely allowable. Right now, tonight, I am also content to not know what I'll do next. I have tomorrow to go to work and enjoy crafting of the last big project in my career. It's nice to have some huge unknowns to face. In my case, it's also very realistic. Stay tuned!

2009-07-28T23:21:00.000-07:00

July 28th, 2009:

Every other Tuesday mid-afternoon, I call a number in Scottsdale AZ, and speak with Richelle, who teaches me about the body's chakras. She has a lesson plan that takes two weeks per chakra. The first week she identifies the characteristics of the chakra, what parts of the body it manages and its contribution to the rest of the body's psychic systems. Using guided imagery, she illustrates the functions of the chakra. This session ends with a request for a healing to re-balance and repair any damage to that part of the body. In the second week she talks about the gland in the chakra that sends its particular fluids into the rest of the organism. It's fascinating to be collecting this information at the end of my life. Never too late. We started with the first chakra several weeks ago, and today our work focused on the adrenal glands; the second session relating to the third chakra.

The cleansing for today involved understanding how I use and abuse stress with my body. Eyes closed, I heard her ask, "Getting started, is there anything that your body would like? Anything it isn't getting right now?" The immediate answer was: massage. I want more massage. Easy to do since I know and have worked with body workers over the years. For several months, I have been feeling untouched and haven't answered that request for attention. OK, line up massage.

Moving forward, she asked, "When you were born, what was the commitment of your spirit to your body?" Again the immediate knowing: 100%. I know that one of my most important tasks in this life was to learn as much as possible about the wisdom of my body. After many lives where I've turned away from respecting and learning from my flesh, this time it's been top of the list to figure out how to hear and support the knowledge of my physical self. I took some difficult turns in this path, including early childhood depression and physical molestation as ways to shut down my connection with my corporeal self. Once I was shut down, I had to figure out how to wake up.

It's taken decades of effort to feel comfortable, joyous, even ecstatic in my body. Thanks to my lovers, my erotic teachers, body work, dance, breath work, yoga, hours in the gym where all I had to do was move, stretch and let my suppleness lead the way. Smoking for thirty five years was another severe blow to my body; ten times a day I'd light up and pollute my home. I believe that one of my most important birthrights to nurture in this life is to deepen my appreciation of my physical self. Happily, there have been times when I sensed beyond knowing that my body (and all living organisms) is a cosmic gift. I have gotten to that place and hung out there for a while. Whew! Doesn't get better.

"And today?" she asked. "What is your spirit's commitment to your body today?" This time the answer is 70%, no longer the full 100%. Hummmm, has my spirit has grown weary over the past sixty years of unflagging effort? Why did I start at full commitment and drop my intention by 30%? I don't know the answer. I have this percentage to mull as I wish. "No judgement," Richelle reminded me. Still, this shift of intention has makes me curious. Am I giving more attention to other parts of the self?

I'm convinced that much of the important work I do between now and the end of my life will focus on how much I can be in my body. By "be" I mean be conscious. All my life I've flipping my ON / OFF switch. This is accelerating these days. I'm awake, numb, sensitive, unaware. I recall the work I did in therapy last week where I drew my pink happy body assaulted by thick black cancer color. In that session, the important breakthrough was to feel fear. I let myself open to the terror of being consumed by the cancer that lives in me. How could I not feel that? Answer: a lifetime of well-honed practice at compartmentalizing scary feelings. And now, in my final months, I have time and intention to bring some of these compartment walls down so that I can have the experience of living in a body that has the courage and support to express itself. What a fine and exciting aspiration!

2009-07-27T22:14:00.000-07:00

July 27, 2009:

Last Friday, my friend Betsy and I had our monthly Zuni restaurant lunch. Afterward, as I was about to get out of the car and head up to my apartment for a mid-afternoon nap, I gave Betsy a hug, told her that I loved her and started crying, saying, "I want more. I want more time with you. I don't want this to be over." A couple of days later, we were talking on the phone, and I told her how important it was for me to get in touch with those feelings of ending and loss. "It's not just you," she reminded me. "We feel that too. All of your friends are having to cope with losing you too." Whew, I needed to hear that. One of the murkier aspects of this cancer is that it can narrow me into narcissism. This must be all about me. Well, no. On the feeling level my terminal illness is happening for all of us. I was so grateful that Betsy was there to remind me of this collective fact.

Which caused me to start thinking about anticipatory grief. It's a term that was used a lot, and with good reason, during the height of dying during the AIDS epidemic. All of us had friends who were ill and not getting better, and all of us, PWAs and their friends, were in prolonged states of ongoing anticipatory grief. To refresh my memory about this topic, I googled it and found the following definition:

Anticipatory Grief: The normal mourning that occurs when a patient or family is expecting death. Anticipatory grief has many of the same symptoms as those experienced after a death has occurred. It includes all of the thinking, feeling, cultural, and social reactions to an expected death that are felt by by the patient and family.

Anticipatory grief includes depression, extreme concern for the dying person, preparing for the death, and adjusting to changes caused by the death. It gives the family and friends more time to slowly get used to the reality of the loss. People are able to complete unfinished business with the dying person (for example, saying "Goodbye," "I love you," or "I forgive you."

Anticipatory grief may not always occur. Also, it does not mean that the person feels the same kind of grief before the death as after the death. The grief experienced before a death does not make the grief after the death last a shorter amount of time.

The definition goes on to talk about the difference between anticipatory and unexpected grief. In the latter, dying is not expected and the mourner has to deal with levels of overwhelm and severed connection that are far more radical than the measured, interactive continuity of life with a person dying over time.

What Betsy reminded me of was that this is a communal event. Because there's time for process, reflection, conflict and resolution there's time to undo old patterns of behavior and find new ways to relate. That will certainly be the case with me. And as I hear from more of you about how you are coping, the feelings of stunned numbness, confusion about why I am approaching my illness in this way, fear, replaying other deaths, anger, etc. the group creates a field of feeling. At this point tonight, I'm most aware of how anticipation allows for an easing into more of this illness without clobbering me senseless. It's a stepping in and out. A trying on. Testing. The luxury of being tentative. Nothing final yet. But the need to start facing final.

2009-07-26T22:07:00.000-07:00

July 26th, 2009:

How to summarize and express what I've learned over the course of my life? In the past weeks, this question has emerged in a couple of ways. First, I decided that I wanted to create a video for my memorial service where I would have a chance to speak to everyone present. This impulse told me that I want a memorial service. You can be sure that will be organized and presented in due time. Also, I realized that I am aware of what some of my core life work has been, and I'd like to talk about that. I'm not saying that I have a total wrap on all my life's purpose, but there are major themes that I certainly haven't been conscious of for most of my life. Now I can see those themes clearly, and I'm moved by their intentions and their results. This has been a lifetime of considerable growth for me. I say that with humility and gratitude.

So tomorrow afternoon, my friend Beth who is a filmmaker will come over to my apartment and look around for places to shoot the video. I'd like the resulting CD to include a tour through this apartment that has been such a supportive home for the past 16 years of my life. It's a beautiful place, and I have loved nurturing the energy here. There will be a stroll through the rooms and leading to the living room overlooking the park. Plan is to sit somewhere close to the window and deliver what I want to say. After the CD is played at my memorial service there will be copies available; a final giving and taking.

For the past three weeks, I've been drafting the script. Typically, I write narrative text, and that's very different from the spoken word. The first time I took an early draft out of the printer and tried to read it aloud, it was laughable. The words did not sound spoken, they were written words on the page for the page. Back to the draft. But underlying getting the sound right for a spoken recording, there was the more important matter of content. How do I express what I've learned in this life? Which events best carry the weight of how I learned my lessons? What were the pivots that made change possible? How did my heart crack open so that I could love? What's so exciting about these questions is that now I know many of the answers. I've lived them. I can remember them. So I've written out the basic architecture of my transformations. Now I'm refining the details of how my life's learnings have altered me. This information is simply available. What a gift!

The other direction of expression involves my godson Willem. In conversation with his Mom, Kris, she asked me to consider putting together something for Willem to have, some guide, some thoughts from me to him about...well, that's still an open question. What do I want to say to my godson who I won't be present for in mortal form? What can I say now that will have value in his future? In the second week of August, I plan to travel to Portland to see Willem. At that time I'll be with him, his parents and his godmother Christine. My plan is to do astrological readings that focus on Willem, but include input from the chart energy of his parents and godparents. Still, as much as I love reading astrological charts, the request to develop something for Willem remains just below the surface of my conscious mind. I feel like it's not time to go there yet. Might be my inner job manager wanting me to finish one project--the memorial service video--before starting off in another direction. I accept that.

What's fascinating to me is the clarity of these projects. The memorial service CD is simply writing itself. True, I take time to weigh in with considerations about sound, presentation and using the medium of delivery. But the content is quite available. We'll see if it's the same with the gift that emerges for Willem. In the time that I have in the immediate future, it's fascinating to feel this need for legacy emerge. Over the ages, people have taken such extraordinary flights with the legacy urge: monuments both grotesque and grand, eye contact at a time after speech has failed, a decision to withhold stories because they are too painful to relate. Many, many responses to the yearning to summarize and say, "This happened to me. This is what I've learned." For all of my life, I have received the gifts from the candy store of personal wisdom. I've absorbed what others have learned with some context of why and how they learned it. Now, it's my turn to add to this repository.

2009-07-23T20:18:00.000-07:00

July 23rd, 2009:

During the past several months, my relationship with my Dad has undergone a profound and unexpected change. For most of my life, we were stuck in power struggle and unhappiness. I spent a great deal of effort trying to grow away from him, yet our force field held both of us in serious bondage. My dreams of moving away from home, my pleasure at living in San Francisco and creating life on my terms was done knowing that I'd get little if any support from him. He didn't like my gayness, didn't appreciate that I had avoided getting drafted, and it seemed from my perspective that he seriously didn't like me.

In the past couple of years, as my Dad's mental acuity has softened and shortened, he's become sweeter and more loving. I now think that his childhood and adulthood were very hard for him. The responsibility of maintaining a family was not only challenging, it was often terrifying. He felt fear and resentment. Having an effete son traipsing off to Europe and grand dining and the opera wasn't part of his life plan. But now, with deep retirement and old age, his sense of responsibility has evaporated. He is taken care of. His job is to get to his meals, visit with his neighbors, grieve the death of my mom. So that prickly edge and trigger-happy anger has given way to a much more relaxed guy. His inner sweetness is out and functional. His new contract with the world is, "I'll be nice and you'll love me." And it works.

I would say that my Dad has called me on the phone maybe eight or nine times in my life. Half of those times have been in the past couple of months. Clearly, I do most of the initiating when it comes to telephoning. And no matter. I now enjoy reaching for the phone to check in with him. As soon as he recognizes my voice, he says with heartfelt warmth, "It is so GOOD to hear you!" Followed by his questions about how I am and his concern for my health, my job, my daily life. I am still getting used to his concern and empathy after a lifetime of blame and not good enough. It is a very healing shift. Very healing. As I listen to his voice, I can feel the father that was always there, but eclipsed by anger and confusion. Now, he's completely exposed as someone who loves his family. It's his greatest joy to talk about my sister, myself, and my departed mom.

After decades of struggling in this most troubled and unhappy relationship of my life, I am enjoying a totally different experience. "I am so proud of you," my Dad will say. "You've been such a wonderful son," he claims. "It means so much to me that you call." Loving, caring warmth that I have been waiting for all my life. Now it's happening. And yes, it was worth waiting for.

2009-07-22T23:24:00.001-07:00

July 22, 2009:

Last week, my friends Goel and Philp brought dinner to my house so that we could visit over food. Since these guys enjoy wine, I decided to open up one of my four bottles, a Syrah from a vineyard that doesn't commercially market its products and has a great reputation. I thought that I might even have a glass myself for the first time in a long time. As I twisted the corkscrew, the cork pulverized. But being determined, I got a screwdriver and pried out the remaining cork. For the final removal, I tapped the cork into the bottle and was suddenly sprayed with red wine, all over my mint green shirt, my face, my glasses, my hair. Loud expletives as I reached for a towel, wiped it across my face and saw that my microfiber shirt had absorbed the wine and could not be cleaned. I hurled the towel into the sink and in a reasonably controlled voice said to my guests, "Back in a flash. Costume change." Going into my bedroom closet to get a new shirt, I furiously ripped the stained shirt off my body, buttons flying, fabric shredding. And then, as if everything was somewhat normal, I put on a new shirt and rejoined Philip and Goel for dinner. "Wow, you were pissed," said Philip. "You bet," I muttered. "That wine in my face really startled me." Then, I strained the rest of the cork from the Syrah, poured two glasses and served it. "I'll pass tonight," I explained. "My attitude is really bad toward this wine. You enjoy" Which they did.

Today in therapy, my counselor was asking me about how I was dealing with the ambiguity of not knowing what would happen next with my health. I gave a few explanations and she directed my attention toward the anger I'd felt a few weeks ago when I bashed the cancer cells into bloody bits. "Anger?" I asked. Then I remembered and narrated the incident from dinner the prior week. "Why did you get so angry?" she asked. Slowly, I replayed the scene of opening the wine, feeling the corkscrew break the cork, gently tapping the remaining cork into the pressurized bottle and my alarm at being sprayed suddenly. That was it, I realized, the unexpected wine in my face; that's what infuriated me. "Why were you infuriated?" she asked. "Well," I replied, I felt like I was being attacked." It sounded odd to confess that a bottle of wine could attack me, but there was something tugging under that strange perception. So I said it again. "I felt like I was being attacked." Then I associated the sudden wine in the face with having a big, growing tumor in my pelvis, "I feel like I'm being attacked. I'm being attacked. I'm being attacked."

"So what's it like to be attacked?" she asked. I probably gave her the deer-in-the-headlights look, because reached over and pulled out a pad of art paper and a big basket of crayons. Draw, George. Sure, I can do that. And I did, reaching for the pink crayon and easily looping circles that became healthy zones of organs and connective tissue, vital and smooth and integrated in a whole architecture of related shapes. I looked at the pink health resting on the paper. Putting the pink crayon back, I found a thick waxy black crayon. I held the crayon without thinking. And then, faster than my mind, like a Japanese calligrapher, I pushed the black color hard against the paper, jerking the crayon back and forth in an attack of dark jagged black against healthy pink. It was a furious assault and when a knot of black was packed against the pink tissue, I stopped just as suddenly.

I looked at my picture, at both the supporting pink home and the thick black invasion. After many months of living with this pelvic tumor and other "spots" and "sites" and "places" that I've seen on CT and MRI scans, I finally felt the terror and fear of having this cancer growing in my body. I feel like I am under attack, and I don't know how to ward off the attack. Of course, I have done many things: chemo, diet, meditation, therapy, some study, lots of talk. But in all of this, my body has been under siege without being directly acknowledged. It's been months since I've talked to the tumors. I have never set up a formal dialog with my body to give it comfort or care. My most direct contact with my body happens via food. I give my body great food. But like a well fed child that is otherwise neglected, I realized today that my body has been unspeakably lonely and deserted. I don't hear it. I let it know that I don't want to hear it. And meantime, it is feeling attacked. Many tears to let these feelings pass through me.

Then as therapists will do, my counselor asked, "Have you felt your body being neglected before?" I angled my head as if tilting it would shake loose a memory. "Well," she wondered, "What about when you were being molested and your Mother did nothing. Perhaps that's when you learned how to neglect your body?" That suggestion opened major floodgates.

There I was in my therapist's office overlooking Castro St., realizing that I had spent much of my life using a template for neglect with my body. And such a fine body, so undeserving of being ignored and dismissed. I really felt flattened. I had been given this beautiful home to live in, and I had proceeded to ignore it's needs and yearnings. I had told it what I wanted it to do. I had judged it harshly if it got too fat or tired or wrinkled. But I had not listened to it. I had taught myself not to listen. When I was a young child being molested, I had told my body to shut up. And to stay shut up. And, having accomplished that bit of harsh parenting, I'd moved forward into my life. Ouch. Ouch.

"So," my therapist wondered, "How do you care for someone who needs to be heard and is in pain and fear?" "How do I do that?" I asked. "Yes, how do you care for someone who's hurting?" she repeated. "Well, I tell them that I love them. Sometimes I hold them. I tell them that they are more than their pain. But mostly I give them love."

"Good," she nodded. "You can do that for your body too. You can tell it that you love it. And you may not be able to overcome the attack of the tumors, but you can overcome the neglect of not listening to your body. You can definitely overcome neglect. Especially you." End of session.

2009-07-17T20:14:00.000-07:00

July 17, 2009:

Gaetano and I got into his car yesterday morning and drove with my Mom's ashes across the Bay Bridge to Piedmont. When we reached Mountain View Cemetery, we stopped and got out of the car. It was a lovely day, warm and more humid than most, a light steamy edge to the air. I kept thinking that my Mom would have loved yesterday. She would have smiled and looked around and taken full breaths. It would have pleased her to be home.

Although I've done end-of-life care for going on thirty years, I haven't been to a cemetery for decades. I simply don't go. But my Mom's family has slowly been filling up a niche in the Mountain view columbarium for some eighty years. As far as I know, it is the last material task to be done for my Mom, and I was glad to have the honor. During her dying and at the time of her memorial service, my sister stepped forth and did a splendid job of caring, delegating, signing off, making good choices and taking responsibility.

My role at the end had a finality that didn't occur to me until the night before interment. I lurched through strange sensations that didn't resolve into images or information. I felt preoccupied, testy, sorrowful, zoned. In the three months that my Mom's ashes had been resident in my apartment, I can't say that we had dialog. I don't associate my Mom with her ashes. When I did communicate with her, it was spur of the moment. I didn't create ritual with her ashes, didn't sit holding them in my lap. But, I was aware that I wanted to move them on in good time. That good time was set for the day a week prior when I suddenly had to cancel since the tumor on my rib had just erupted, causing a lot of pain and drama. This Thursday was the second appointment.

The procedure was quite simple. Her ashes were transferred from one plastic bag to another, then placed into a square bronze urn. The urn was sealed. Then, we walked across the cemetery to the columbarium and entered into a world of watery marble walls, long hallways with side chapels full of ascending niches, indirect lighting, a great silence pervading. Hallway turn left, hallway turn right. Stop. A ladder next to the wall. My family's niche on the top row. Impulsively, I kissed the bronze urn just before handing it over to the fellow who would carry it upward to the final resting place. The decision to kiss the metal box was my first deliberate choice in several minutes; I realized that I was in a light trace. And then, the metal box was put in its place. Goodbye.

The cemetery attendant motioned behind Gaetano and myself. "Would you like to sit for a minute?" he asked. What a concept! I hadn't thought into the next moment. The ashes were gone, what else was there to do? So we both sat. The attendant left. It was very quiet. Then, slowly, the uneven breath, the heat inside the eyelids and finally the arrival of the tears. They were wonderful tears: crystalline, effortless, heated. In my many years of knowing Gaetano, this was one of our closest times together. There was no need to go anywhere else, so we didn't. And then, just as simply, it was time to go.

Outside in the car as we were leaving Mountain View, I asked Gaetano, "When we were sitting in those chairs, were you crying for your Mom?" "I was crying for all of us," he answered. That felt like a memorable answer.

My Mom would have been thrilled by the next stop: lunch at Olivetto's. A table next to the window overlooking College Avenue where she'd been a child and a teenager. Ordering a remarkable sequence of Italian summer food; a crostatto with freshly sliced pancetta and buttery avocado with just a drizzle of vinaigrette. My Mom would have started talking about her trips to Italy, recalling lunches in Rome. Then--which is one of the reasons she was special--she would have put aside her own experiences and asked us about our memories of Italy. So we sat and enjoyed the aromas, the skillful play of textures, the mezzogiorno warmth, two people ordering food for three.

2009-07-14T22:20:00.000-07:00

July 14, 2009:

A few weeks ago, I was up at my home in Sonoma and retrieved a book to bring home and read. A few days later, I opened the book and out fell the finalized floor plan that I hoped to use for remodeling that same home. Since then, I've kept the plans on my desk here in the City. I haven't opened them until this evening. It has felt too painful to look at those carefully evolved blueprints that will never happen.

For a variety of reasons, some of them family legacy and some more personal, I've never owned property until the last four years. Then, when I went into land partnership with Ann, I suddenly had a new creative venture in my life. It was a scruffy in-law apartment tacked onto a horse barn, a fixer-upper crying out for help. In the beginning the two halves of the building were separated by solid walls. To get from one side to the other, you had to literally go outside and into the door at the other end of the building. Particularly inconvenient when I woke up on one side on a wet, cold winter morning and wanted to get breakfast in the kitchen located on the other side. Inconvenient, but it's what I started with.

The dialog that ensued began in my living room, warmed by oak flames in the Franklin stove. I'd sit in a chair, close my eyes and ask the house, "What do you want to become?" What walls go? What new rooms are waiting to be framed? How many bedrooms? It took many months of sifting and playing with architectural software to configure the plans that are open in front of me this evening. One of the things I learned was that I not only have the decorator gene of a gay man--that was already common knowledge--but also an interest in shaping room spaces. A feature of this house was that it sat flat on flat ground. When you looked out the french doors and windows you didn't see into a panorama of countryside, rather you looked right out at the meadow at ground level. You faced into the big trunks of the old oak trees as they rose out of the soil. I'd always lived up high and looked out over a view. This house was different, it was about being literally grounded.

As the house started to answer my questions about it's hopes for becoming, I discovered things both unexpected and revealing in myself. While staying within the footprint of the foundation, I wanted to create spaces that held a surprising amount of Chinese furniture. There was even a wall devoted to a Chinese lattice window that let in a patterned amount of light and background. This was in homage to a wonderful courtyard-based home where I remembered living during the Southern Song dynasty. Hey, why not? The floor plan retrieved a memory of a very happy time. I could create a home for my feelings by arranging walls. I had never known this before.

Some of the excitement of being a homeowner was about reconfiguring rooms for the future. Other gifts were available immediately. In Sonoma, I returned to my childhood in the country. I grew up splitting firewood, doing heavy maintenance gardening and knowing about native plants. From college forward almost forty years, I moved further away from soil and the seasonal efforts of cultivating. Now, in Sonoma, I was back on a complex piece of property that varied from hard pack earth in the meadow to deep loam in the upper garden. There were open spaces and sequestered zones inside old hedges. Really the variety was astonishing.

My approach to the property was slow, even tentative. It took me a year to rearrange my schedule so that I had most weekends available to drive up to Sonoma. Then, two years of settling in with my evolving plans for the house and a learning curve of how the weather would define how time was spent. If rain, forget gardening. If Spring, get busy. If Fall, the oak leaves don't really cascade en masse until late November. So many interesting lessons worth learning from the here and now.

The center of the property was not only the house and the land, but also my friendship with Ann which was a key part of my connection to the place. We discovered early that we meshed well. She had formal training as a landscape designer, and my background was in heavy lifting. Both were needed. But my favorite times were when we simply visited and enjoyed out time together. At my house we sat in front of the fire place and enjoyed the warmth from the stove. At her house up the hill, we sat on the deck for hours in the afternoon and into long summer evenings. Talking, talking, talking. What fun!

When the plans for remodeling my house fell out of the book, I realized how much I have retreated from Sonoma during the past year. Even before my cancer diagnosis when I thought my only problem was a hip that needed to be replaced, it was harder for me to work in the yard so I did less. After the cancer gave rise to the chemo, my visits dramatically dropped to once every six weeks, once every two months. I was no longer on the property. And by renting my home, I gave up my home. It's true that I have always been welcome to stay in the extra bedroom or at Ann's. The truth is that it was too painful for me to be on the land. Another of my excuses was that it physically hurt to drive in the car up to Sonoma. True, true. The deeper truth is that is was too painful for me to be on the land.

So, this weekend, I'm going up to Sonoma to divide up my remaining goods. Some pieces will stay with the house. Some family furniture will be shipped to my sister. It's been good this evening to look at the house plans and to write this farewell. Curiously, it's much less painful to face the loss of the property than I feared. It has been a wonderful vision to live in for the past four years. The land in Sonoma has built new rooms inside of me and restored my connection to the earth. For a long time, I have known that not everything that gets planned gets built.

2009-07-11T23:20:00.000-07:00

July 11th, 2009:

What an accelerated week! The past few days looped into a neat circle yesterday evening, as I was sitting in the dress circle at Herbst Theatre, waiting for the first Merola concert of the summer to begin. This would be my first opportunity to hear this year's crop of apprentice singers from all around the world as they sang excerpts from five operas--Dutchman, Orfeo ed Eurydice, The Medium, L'Italiana in Algeri and the last act of Boheme. I love the Merola Program and have been attending the Finale in mid-August for several years. Hearing the new talent that is being polished for world stages thrills me. There's a future, and I am hearing it early.

As I was waiting, who should come down to my aisle to say hi, but Lisa Capaldini, my primary care physician! One of our connections along with an interest in my health is opera. Of course she would be there as well. She was really startled to see me. "You look so great!" she kept repeating. And she had good reason to wonder. When I crawled into her office on Tuesday morning, I was in deep pain, fearful that my right arm would be incapacitated forever. And here, some four days later after starting her adept treatment, I am sitting with my friends and catching up on opera chat before a concert. To other eyes, there was no hint of the desperate times earlier in the week. What a fine end to a difficult passage. Presently, the concert hall lights dimmed and the next generation of singers took to the stage and began to command our attention.

2009-07-10T23:05:00.000-07:00

July 10th, 2009:

Before my new tumor and fractured rib captured my attention earlier this week, I was planning to post a correspondence with a close friend of the past 35 years. Originally, I met her as the younger sister of a friend and then, as a student in one of my classes. We quickly got over the younger/older issue and became friends, peers interested in astrology and alternative healing as well as basically liking each other very much. Our friendship has endured as she married, became a mom, moved from the Coast to Hawaii and then to the Rockies. In the past several years our talks on the phone have slowed, but we often connected at the time of our Scorpio birthdays. Recently, our friendship has renewed as my health has declined. The blog has kept her informed, and she sent the following email three weeks ago in response to my posting about getting angry at my tumor and bashing the critter with a hammer.

Hi George:
I just read your blog of 6/17 and felt literally compelled to compile and send you some samples of alternatives available that either you or the nutritionist I spoke of might look into. Again, please take this as an offering and know that I completely respect your autonomy in this. I just felt a strong desire to support your antagonism toward and rejection of the tumor cells, and if I can support you in any way, I want to. Some things are as simple as seaweed and including seaweed extracts in the diet that have been shown to support apoptosis in cancer cells. Foods can be powerful medicinal allies in ridding the body of abnormal processes as I know you experienced at OHI (Optimum Health Institute) although I don't know what they shared with you in the way of natural ingredients. (the letter continues to respect my response whatever that response may be).

This letter prompted a deep questioning of what to answer. Believe me, I gave it some thought, which resulted in my reply.

My Friend:
I have sat with the contents of your letter for a couple of weeks to clarify my response. I respect you as a healer, and I believe that there are strong body, diet, mind connections that can promote healing. For the past several months, my body has been telling me that I am going in the direction intended. This means that I am not going to be cured from my tumors and that I will die from the cancer I currently have. This information deeply shocked me. I experienced a lot of sadness and anger because I had big plans for the rest of my life. So, the rest of my life is what I have now and over the next few months. It will have to be enough.

Rather than start swimming upstream against this information, I have been working to accept it. My current efforts are directed to completing what's needed before I can't function so well any more. I have a home in the country to sell. Possessions to give away. Work to wrap up. Perhaps a final trip or two to take. Also, I am planning to buy a television set with a DVD player to start watching a lifetime of missed programs, especially operas and dance. I've been able to coordinate moving into the end-of-life facility where I've volunteered for the past twenty two years. Although I'm not happy about this all the time, I am feeling cared for and held.

Rather than give you the green light to start sending information my way, it is more honest for me to say that I am OK with my destiny. It has been a wonderful life, and I plan to have a wonderful death. By wonderful death, I mean, I would like to have a clear space to just BE in. Part of that means stepping aside from working and energizing to cure myself. I have cured myself in the past. This time will be different. I see my dying as a healing but not a curing.

I thank you for reading this letter with the understanding that you will bring to it. I ask you to witness me. That will be plenty. I intend to keep people informed about how my health and my life intertwine until I am no longer able to do that. After that, there will be other ways you'll be kept informed so that there won't be an abrupt shut off of connection. I don't expect to traverse that change for several more months. In the meantime, I am very grateful that we're back in touch again, and I look forward to more communication in the time I have left. Thank you for being such a caring and loving friend for many years. I cherish and admire your depth of feeling and healing abilities. I love you. I love you.

Geo.

2009-07-09T21:39:00.000-07:00

July 9th, 2009:

Today, I walked into Dr. Capaldini's office some 48 hours after my last dreadful appearance, and this time I felt reasonably radiant. The prednisone has taken away the intense pain from my fractured rib. And, as Lisa predicted, I needed a day to be really stupified while my body absorbed the doubled dose of my pain management medication. It felt so wonderful to say Hi! to all the staff in Lisa's office; I had been in such agony just two days prior.

I delivered the CD of my CT scan to Dr. Jahan so that he can take a look and pass it on to his pals in radiology. If the prednisone works for more than short term, then I may not need radiation. If the prednisone only works short term, then I am out of pain for now and can have the tumor radiated. It may seem odd, but I am positively ebullient about both of these possibilites because they mean that the pain is banished. That was wicked pain. Also, Dr. Jahan has talked about having a general bone scan done to see what the cancer involvement is throughout the bones in my body.

On Wednesday during the nadir of my transition from acute pain in my shoulder and dizziness from all the new opiates, I had a most unexpected realization which was that I am deeply taken care of. I have a fine medical team. I could move into Maitri very quickly. I've organized my give away of furniture, rugs, photographs, glass and even some of my more outstanding clothes. I could call on my Very Organized Virgo (VOV) team of friends to dispense everything with skill and haste. I could move from my apartment into high-maintenace care very quickly. That's what I mean by taken care of. I lay on my bed and felt miserably physically, but held within the deeper comfort of knowing that I am not heading into chaos. I could feel overwhelmed without being overwhelmed.

Today I happily returned to work. The fellow who coordinates my output stopped by to say Hi. I told him that I'd had a bit of a health crisis earlier in the week, but felt much better. "Are you OK?" he asked. I haven't advertised my health status at work. I have co-workers who regularly read my blog and comment on the posts as they appear. Most of my other team members just assume that I'm getting better since I look good. My hair is back in full vigor, and I appear daily in brightly colored shirts. Who would guess? "Definitely. Much better, " I replied.

I sat with that prevarication for about ten minutes, and was increasingly unhappy with sidestepping the truth. Time to come out. I went to his desk and asked, "Can we talk?" I could tell that he was in project mode and totally unprepared for the direction we were about to traverse. We sat down in a closed room. "Dave," I began, "I don't know how much you know about my health, but I am terminally ill and expect to be able to stay at work for another six weeks or so. That should get me through the basic work on documenting Cost Management." He was clearly stunned. "It must seem surreal to hear this, but I want to let you know. I have excellent doctors and support from friends. I'll move into an end-of-life care facility when the time comes. I've worked at this hospice for over twenty years, so it's a really comforting place for me." The rest of the conversation was a fine example of how someone who is basically caring and empathetic can take in unexpected and fearful information yet stay connected. Dave stayed connected by expressing his sorrow, which was very moving to me. Then, back to work.

Feeling on a something of a roll, I decided that I'd better talk to my boss as well. He has been very supportive of my health ups and downs, but when I see him, he usually tells me how good I look. My hunch is that he has not read my blog for some time. I pulled him into another available office and closed the door. I delivered a similar summary about my declining health, my pleasure at coming to work and being effective, and my need to leave in several weeks. My boss teared up and said, "I am so sorry......we all love you here." Whew, that took me by surprise. And then he treated me to a very succinct dharma talk. "When my old Chinese grandmother was dying we didn't tell her. But she had several months during the Spring and Summer when we visited with her a lot. We loved her and held her and laughed with her, and she loved all of us. That's what you can do for your friends. You can let them love you. They want to do that. Let them love you." Now that's a boss that I cherish. What a wonderful gift.

2009-07-08T08:48:00.000-07:00

July 7, 2009:
Bad news. For the past four weeks or so, I've felt an uncomfortable strain in my right shoulder as if I had pulled a muscle. On Monday evening, the pain became so intense that I walked over to the Emergency Room at Davies Hospital. After an X-ray and a CT scan and a wait of five hours, I was told that the reason for my distress was that there is a tumor in one of my ribs which has fractured the bone. Until that moment, I had no idea that there was any bone involvement other than the metastasis from my pelvic sarcoma into my pubic bone. So this is a whole new, and scary, development. The pain was severe, I gave it an 8 on a scale of 10. Most difficult was that to ease the pain, I had to hold my right arm straight up, then bend it at the elbow so that the palm of my hand rested along my spine. I was told by a little old lady at the hospital that I had great range of motion. I growled back that I was in a great deal of pain.

Yesterday morning, Lisa Capaldini, my primary care physician saw me on an emergency basis. When I told her what was going on she smiled and said, "Oh, we'll get you through this." Note: this is superb bedside manner!! I was so distressed that I was worried about holding my arm over my head for the rest of my life; that's how much the pain had taken over. But my pain did not take over Lisa. No, no. First, a prescription of anti-inflammatories to calm down the inflammation around the fracture (that's what hurts the most). Then, double my pain patches from 150 mg of Fentanyl to 300 mg. She said it would take about three hours for the anti-inflammatory to kick in and about two days for the Fentanyl to take charge. During the time that the Fentanyl is ramping up, I am woozy, but lucid enough to type this blog. Also, as a right-handed typist (and right-handed everything else), the effort to make these keystrokes is uncomfortable but nothing like the agony I felt yesterday.

Many short-term changes to my life plans. I will not be able to take my trip to Portland this weekend due to the uncertainty of getting my pain under control. Driving with my right arm not fully functional is not something I want to try. Nor lugging a suitcase. Etc. I have to say, this is the biggest shock at the moment because I was really stoked about seeing many close friends on this trip. This shock helps to eclipse the larger shock of having bone cancer. That is a very large shock indeed. Lisa said that this tumor might be treated with radiation if it gets too difficult. And there are other options. I am just a day and a half into the diagnosis at this point, and Dr. Jahan my oncologist hasn't had time to weigh in on what to do. We'll see.

In the meantime, I am going to ask all of you to please not call and ask me how I am. I've just done my best to tell you that in this entry. As new info unfolds, I'll let you know and I will also let you know when it's OK to call me. I know that I need a couple of days to be stupified by double my pain management. You can always send me an email to express your thoughts. But for right now, please, no phone calls. I love all of you and I know that you love me. That connection is full and in place.

2009-07-02T23:32:00.000-07:00

July 2, 2009: I visited with my oncologist , Dr. Jahan, on Monday of this week. I had a short list of aches and pains to relate as well as catching him up about my hope to move into Maitri. I showed him my project plan with the tasks I wanted to complete arranged in categories. He raised his eyebrows, "You are really organized. This is good."

Then he asked, "What's are your days like? What do you do? " I told him, "I get up between 7:30 and 8:30. I reach for a peach or an apricot and decide which striped shirt to wear. Then I'm out the door. I get work done in the morning, and I usually have lunch with a friend. I like to visit over good food for an an hour and a half. Back to work and home for a nap by mid-afternoon. I wake up in an hour or so, then read until dinner. I enjoy cooking my own food. Sometimes I go out in the evening. I have dinner with a friend or hear an opera. Usually I stay home and after dinner more reading and emailing until bed time."

"You haven't mentioned pain or fatigue," he said. I agreed, "I haven't had fatigue for a couple of weeks. If I start to become uncomfortable I take a morphine pill or two. That stops the pain in about twenty minutes. But I don't need pain breakthough very often. Maybe once or twice a week."

"You have a a lot of quality of life," Dr. Jahan concluded, then continued. "If I offer you chemo, it's going to diminish this quality you have." I nodded my head. "Right. I do have a good life right now." Dr. Jahan closed with, "Plan to come back in two months. If anything happens between now and then, call me immediately." As I mentioned in my Monday blog, we then proceeded to talk for another forty minutes about restaurants both French and domestic. And recipes....

So that's my strategy. Currently, I have a very functional life where I have a lot of choices and not too many limits. It will not always be this way. But it is this way for now. As the week has progressed, I have lived through more basic days like the one I summarized for Dr. Jahan. I've gotten a lot done at work. I've had fine connections with friends over lunch. I've had some meals and tasted flavors that were memorable. I sat in Zuni this afternoon with my friend Betsy as we strolled our way through a small pizza, half portions of pork tenderloin with heated Bing cherries. A dessert of three tiers of meringue wafers layered with creme chantilly with golden raspberries and a Santa Rosa plum sauce. We enjoyed two hours of sunlit bliss. It will not always be thus, but it is this way right now.

2009-06-30T21:50:00.000-07:00

June 30th, 2009: Tomorrow, July 1st will be the 29th anniversary of my move from Portland, Oregon to San Francisco. I had been "kidnapped" by my friend Maria who drove me to California with a modest supply of clothes. The conscious excuses for my move were better job prospects and better opera. I planned to settle in an apartment and find a job as technical writer. The fact that I had no actual experience as a writer was offset by my background as a college English instructor. I figured that I knew my way around a sentence and that would be enough to get me started in my new career. As for the opera, I had been traveling to San Francisco for opera weekends where I would see two or three productions over a two or three day span and then, full to my brim, I would return to Portland. But there were deeper reasons that did not immediately reveal themselves.

Some five months earlier I had been taking an after-dinner cigarette break on the back porch of the home where I lived in the Portland hills. Standing under the eaves of the house, I was puffing in the cold, wet darkness, muttering to myself about the lousy Portland winter weather. I was perched over a ravine far away from any person on a rainy winter night. Into this silence a voice took up my thought and said with distinct clarity, "You might as well enjoy this weather because it's the last winter you'll spend in Portland." I was so startled that I blurted a response of, "But I live here!!" After my quick protest, I realized that the sound was disembodied. There was no one out there, just the voice.

A few months passed and rather abruptly my plans to move to San Francisco came into focus. I moved, and crossed the Bay Bridge into my new home on July 1st, 1980. Years later while I was doing bedside care during the fifth or sixth year into the AIDS epidemic, I remembered that voice in the dark. I realized that if that voice had continued with more context and said, for example, "...this is the last winter you will spend in Portland. Because you need to move to San Francisco and learn about hospice care. There is a serious epidemic that is already spreading through the bodies of people you will care for including many men who will become your friends some of whom will die in front of you..." If the voice had continued, I realized that I would have said, "Epidemic? That's psychotic! We don't have epidemics. There's not going to be an epidemic. There's no reason to move."

Of course, the voice would have been correct, although I would have not been able to comprehend that amount of catastrophe. Fortunately, the voice restrained itself and kept it simple: you will move. And I moved.

I was born in Berkeley across the Bay. I relocated to Oregon when I was a three year old baby. But within the sanctuary of our home when just our family was together, my parents would remind me that I was a Californian. For our neighbors and friends we assimilated as quickly as possible, but within our family agreement we were Californians, unrepentant and unconverted. My move to San Francisco in my mid-30's was to step into my birthright. As events have unfolded over the past three decades, this was the home I was born to move to.

There have been better job prospects and better opera. Of course, if I would have stayed in Portland, the epidemic would have found me there. But in San Francisco, the mobilization for AIDS was so deep and impressive that I have always been grateful to have lived through the epidemic here. I can remember going to hear Elizabeth Kubler-Ross lecture in Portland in the late 1970's. One of my deepest promises to myself was that as soon as I got settled in California, I would find a volunteer hospice program to join. That happened early and with surprising ease. Within eight months of arrival, I was sitting at a scruffy cafeteria table in the dining room at San Francisco General Hospital. Across the table was the woman who would become my mentor: Eileen Lemus. She explained that her new program was designed to match volunteers with terminally ill patients who used the County hospital: often foreign born, always poor, often alone, all needing help in a confusing medical system at the time that their body systems were collapsing. That is precisely the mix that most appealed to me.

I signed up immediately and was trained to give emotional support to the men who I was assigned to. Rodie Alexander, the tiny black guy who abandoned his family in New Orleans and lived a marginal life for decades until bladder cancer brought him into SF General and our program. Amazingly, Rodie's cancer abated and he moved back to New Orleans to rejoin the family he had left years before. Gustavo, the Mexican teenager whose cancer had already cost him his left arm before I met him, and who I sat with during the last night of his life. At the end of that long night I was on my way out of the hospital and wanted to say goodbye to Nancy the nurse who had helped Gustavo to breathe as he died. I found Nancy cleaning up in the room of a guy on the ward named Michael Maletta. Michael was in his late 30's, a very dynamic guy with a mysterious illness that had already landed him in the hospital several times. From caring for Gustavo it was just a few short steps into another hospital room. In that room I found Nancy and Michael, and with Michael AIDS found me. We have been together ever since.

From the moment that I connected that voice in the winter darkness with my destiny to move to San Francisco and become a caregiver, I have trusted that my life was guided with purpose and intention. That isn't to say that I haven't gotten lost since then or made mistakes or regretted some actions. But fundamentally, I have felt well used in my life and San Francisco was the container for my work. Gratitude doesn't begin to describe how much I love and appreciate this City.

2009-06-30T00:00:00.001-07:00

June 29th, 2009: Today I had an appointment with Dr. Jahan, my oncologist. Even though I have a daily assault of pains and limitations, I am also in pretty good shape. I made a list of health issues to talk about: muscle pain in my upper right shoulder (probably from too much mouse activity rather than a tumor inside my lung) and a couple of questions about pain medication. We dispensed with those questions in a few minutes. Then on to the more exciting topics which turned out to focus on french restaurants in Paris and in the countryside. I certainly have my favorites in Paris and know nothing about dining outside the city. It was a vibrant, exciting chat, and a luxury to be able to walk away from the grim realities of my illness and get down to the serious pleasures of memorable dining.

Given my current ablility to think, feel and generally be in the world, I won't have to go back for another appointment for at least two months. If anything weird happens, I will call Dr. Jahan right away or hustle to the nearest emergency room. Conclusion: I am on a health plateau right now. My pain is reasonably managed and if I get uncomfortable, I can take more morphine. I'm seldom uncomfortable, I walk pretty adeptly. I go into work five days a week. The sun is shining right now.

And the sun shone yesterday over the crowd too big to count accurately (450,000? Half a million?) gathered along Market St. for the 40th anniversary of the Stonewall riots; the kickoff party for Gay Liberation. Although there was not a cloud in the sky, there was a chill on the breeze as Ken, Gaetano and I watched the parade from the shady South side of Market St. An hour or so before it arrived, I imagined having a meltdown at the curbside as the Maitri cable car went past. But no. When they appeared, I waved, I shouted, I felt a huge connection, but my own health issues and Maitri's emerging presence as my final home didn't overwhelm me. My, the parade lasted for a long time! After three hours, I needed a break so I headed off to the gym for some exercise and a pause from the intense color and input from all that celebrating.

Most inspiring moments: cheering for the group of gay Middle Eastern Muslims waving flags from Iran, Iraq, Syria, Lebanon, Saudi Arabia and Palestine knowing that those countries do not hand out merit badges to gay people; seeing women I know in the dykes on bikes; seeing Mayor Newsom walking to the edge of the crowd slapping palms and shaking hands rather than sitting in rather removed splendor on the back of the Packard convertible that normally carries him along the parade route. I went to a high school reunion some 15 years ago and talked with a classmate who had just returned from Israel. She said that it amazed her to be in crowds and restaurants and public transportation where most of the people around her were Jewish. After a lifetime of living as a minority, suddenly she was surrounded by Jews. That's the way I feel on Gay Pride Day at the parade. I know that there are a lot of gay people in San Francisco, but at the parade it feels to me like most people are gay and there's a healing in that for me. Yesterday was fun, bright, poignant and healing.

2009-06-27T16:05:00.000-07:00

June 27th, 2009: Over the past two weeks, my big effort has been to draft a project plan for the rest of my life. It's a list of tasks that I'd like to accomplish between now and after my death. The tasks are grouped into categories such as: Finances, Distribution of Property, After End-of-Life, Travel, etc. Some of these tasks are dependent on other tasks being started or completed. Many of the tasks are stand-alone events.

One of the task categories is: Moving into Maitri. A couple of months ago during dinner with my friends Bob, Bill, Eileen and Kirsten, the subject came up about me moving into Maitri. during the final stretch of my illness. As most of you know, I did bedside care at Maitri starting in 1988 when there was just one resident. I've been part of the institution's growth and evolution from the beginning. To say that I love the place is an understatement. I am very proud of the quality of care that has been provided there over the years, but particularly since the move to the current location at 401 Duboce St.

I volunteered as an emotional support caregiver until 1995, then I took a year off from directly visiting with residents. Instead, I took care of the garden. In 1996, I joined the board as a member with a background in residential care. I've been on the board ever since, serving with the architectural planning committee as we developed the layout for the new Maitri. I've chaired the program committee, and been vice president and secretary at various times. In the past five years, I've delivered a pre-history of Maitri talk that I deliver to incoming groups of volunteers. In that presentation, I gather far-flung influences--the discovery of penicillin, the American teachings of Suzuki Roshi, the civil rights movement, gay rights, feminism, hippie values, the advent of the drug culture and the growth of the hospice movement--all of which have sourced Maitri as a unique and successful home for end-of-life care.

Because Maitri has always been dedicated to serving people with HIV, I have never thought of moving in there. However, it seems that 14 of the beds in the residence are mandated for people with HIV and the 15th bed does not have that condition. After that discussion at dinner, I imagined moving into Maitri and what a fine place that would be to receive care during my last days. I know the staff there, and I trust their skills. Also, I have always felt close to the residents, although I don't know them as closely now that I'm on the board. A month ago, after our board meeting, I had dinner with Tim Patriarca, the Executive Director. As I was about to bring up the subject of moving into Maitri, he said, "I hope you don't take this the wrong way, but have you thought about coming to Maitri toward the end of your illness?" I laughed and replied, "I was just going to bring up that subject." We talked. I told Tim how much I hope that I could move in. Tim said that there needed to be a careful search through the legal contracts with HOPWA (Housing Opportunity for People With AIDS) who provided our initial funding, but he thought that it could be possible.

On Thursday of this week, I received a phone call from Tim saying the the HOPWA team concluded that I would be able to stay at Maitri. Happily, this 15th bed isn't just for me. It can be given to others who want to be cared for at Maitri. Also, just because the bed is available doesn't mean I will move in. There may be someone else using that bed at the time I'm ready for admission. What the decision means is that I can legally move into Maitri if and when the bed is available.

I can't tell you what a relief it is to know that I will be taken care of during my last days by a community that I already know and love. The weight off my mind is huge. It wasn't until I woke up the following morning and hear the first though in my head, "I can move into Maitri!" that I realized how important this is in the whole trajectory of my illness. I am very, very grateful. It is truly a grace note for me in this already full Gay Pride Week.

A curious footnote: Several years ago, there was a calendar published with pictures of gardens in San Francisco. One of the gardens for a now-forgotten month was of the inner courtyard at Maitri which had been lavishly filled with petunias, black bamboo and other vigorous plants by Peter, one of the residents. I liked the picture so much that I took it out of the calendar and hung it at my desk at work. As I've moved around as a consultant, from Schwab, to Wells Fargo to PG&E, the picture of the garden has come with me. Sometimes I'm not aware of it for days on end. But it has been there for several years now, facing me as I work. In the many hundreds of times I've looked at that garden, it never occurred to me that it was my destination. Now, I understand differently.

2009-06-23T23:33:00.000-07:00

June 23rd, 2009: Since I have started to refer to myself as terminally ill, I have heard the same concern from many people which can be summarized as: "I don't know what to say." I'd like to address that dilemma which is very real and which will not be going away over time. In fact, as my health declines, it may well increase.

First, you can always step right through the confusion by writing and simply saying, "I am thinking of you." That's all. Just, "Thinking of you." To me, that's a very full communication. Also, it gets you out of the conundrum of not knowing what to say. You've just said it simply and clearly. I will know that we are connected. I know that anyway, but direct communication makes it more real. Most of us have lost family or friends in a manner that has remained painful. Now I am joining that community of people who are leaving or have left you. It's hard to know what to say. In my case there will probably be time to unfold many of the feelings that we carry and express them to each other. I hope for that. As my friend Betsy said recently, "You don't have weeks and you don't have years." Exactly.

Whether there's direct gratitude for the warmth of our friendship or a more restrained withdrawl, everyone can witness. You are in complete control of what witness means for you. If you read this blog or not. If you send me an email or not. If you call or not. If we have lunch or not. All of that is witnessing, including the "not" portions. "Not" is part of how we all manage our feelings as my illness progresses. After living through the AIDS epidemic, I have experienced not going to a memorial service because my grief was too big. I have experienced not helping someone who needed help because I couldn't endure more suffering in someone I cared for. What I am saying here is that I learned to fit what I could do with what I couldn't do. There was only one of me.

As my illness progresses, all of us will make many decisions about what we can do and what we won't do about staying in touch. I would like that to be OK and part of the agreement between us. Also, I know how to use the phone and connect via email. I won't be calling everyone on a regular basis but if I need to get in touch, I'll be responsible.

Moving forward, I want to acknowledge the challenge of staying in touch. For my part, there's a point where I won't have the energy to reach out any more. I'm not there yet! Please know that each of us experiences confusion about saying goodbye, and we all evolve our our own ways of living with this discomfort.

Now for a totally different subject: This Sunday is the Gay Pride Parade in San Francisco which is a high holy day on my calendar. Every year, I go to the parade and get hugely energized by the diversity of being out in my community. In the decades I've gone to the parade, I always stand on the curbside cheering the marchers since that's the best way to see all the participating groups. This year, I have plans to go to the parade with my friends Ed, Gaetano and Ken. However, this evening at the Maitri board meeting, I heard that Maitri is sponsoring a contingent. There will be 30 to 50 marchers plus a motorized cable car with residents who will sit a wave from the moving vehicle.

For the first time, I am seriously torn: stand on the curb and see all the groups or be inside the parade and see all the spectators? I've been told that walking up Market St. for blocks and blocks of cheering love is a very powerful upper. What to do? Since this may be my last parade, the decision has a certain urgency and excitement. Win, win. I'll lt you know the outcome. Let me add that I am grateful in my lifetime I can make such a luxurious decision because there IS a parade.

2009-06-17T22:56:00.000-07:00

June 17th, 2009: When she was in San Francisco visiting from Chicago, my friend Laura asked, “Where is your anger about having being sick?” I've given this question intermittent thought ever since I found out I had cancer. I could easily locate my sorrow and my fear. But anger?

Today, I posed the question to Susan, my therapist. I said, “I just don’t know where it is…maybe I don’t have any.” “Well, what about the tumors,” she asked. “Aren’t you angry at the tumors?” Bingo!

It took me seconds to realize that I am furious with the tumors, for what they are doing to my health and my life, for being such selfish, greedy cells that care only about themselves. They aren’t team players! And talk about stupid! They’ll kill all of me in their blind frenzy to grow at the expense of everything else. Another therapist friend, Philip, had told me about some work he had done recently. When he got mad at someone from the past, rather than talk about the issues, he cut right to the chase and asked himself, “How do I want to kill them?” As often happens in a great therapy session, shortly after the big issue reveals itself, it was time to end.

I came home and thought about Philip killing his adversaries and my tumors. What came up for me, was an image of being able to remove each tumor: the big one in the pelvis plus the smaller ones in the liver and lungs. I removed them without harming my body and put them on the cutting board I use to prep my vegetables and other food. And then, I took my claw hammer and beat the living crap out of those ugly lumps. My rage was huge, and each time the hammer came down on the tissue and broke the membranes and cells, I felt better. As the pulp got bloodier and more mashed, I felt happier. “Trying to kill me!” WHAM. “How dare you?” WHAM. And so on for quite a vigorous while.

Afterward, I realized how much I’ve been avoiding contacting the tumors over the past weeks. I have been co-existing with them. Like a bad, bad roommate who you avoid and don’t speak to, but guess what? They haven’t moved out. Occasionally, I touch the tumor in my pelvis to get a sense of how much it’s grown. So far, I can’t feel the tumors in my lungs or liver, so they are even less noticeable to me. But they are inside me, growing with a vengeance. For today, just bashing them to bits is refreshing. No more Mr. Nice Guy.

2009-06-14T20:01:00.000-07:00

June 14th, 2009: Several months ago, I referenced in this blog one of my favorite personal truths: Coming Out Never Stops. Then, it was about facing having cancer. Now that has shifted to coming out as a person who is terminally ill. I’ve found myself doing that over the past few days. I never know when it’s going to happen, or when it will feel appropriate.

I went in to have my teeth cleaned last Thursday. I have been going to this dentist practice for the past 22 years. Seems that it was time for new X-rays, and I thought, “What for? My teeth feel OK. I’m not going to live long enough to need advanced dental work.” Then I reconsidered; if I have a tooth emergency (not that this has ever happened), it would be good to have recent scans. So I agreed to the X-rays. As they were being administered, I thought, “This is the last time my teeth will be X-rayed.” Such a tiny detail, but an example of a mind set that is increasingly asserting itself in me. I am starting to anticipate and remark on the end of things in this world for me in this life. I have to say, it’s pretty gentle most of the time. Not having any more X-rays did not unleash a wave of grief. However, when it came time to talk to Dr. Gregory about my future dental needs, I came out to him as a person who’s terminally ill. He was shocked and very gracious. We cried and thanked each other for taking such good care of each other. In a good doctor/patient relationship, caretaking goes both ways. When he asked if this was goodbye, I considered and said, “No, I will need to have my teeth cleaned in four months. See you in October. Which will probably happen.

I have been struggling with and giving in to the exhaustion that cancels much of my time these days. I’ve always had a good energy level and often my only question was: “Can I get to the next place fast enough?” Not so anymore. Yesterday, Saturday, I got up at around 9:30 after a sleep of some 10 hours. By eleven in the morning, I was back on my bed, ready for a nap, which lasted until 2:30. Then, I got up for most of the afternoon and evening.

I have never experienced anything like this fatigue. I lie prone without moving. No need to move. If I’m awake, I may have slow threads of thoughts, but they are of secondary interest and seldom urgent. My mind is in the background. There is no pain. It’s rather like a paralysis, but without anxiety. Since this can take up most of a day but without providing a deep, fulfilling rest, I am concerned. I also let it happen. This need for rest is so overwhelming, that I can’t imagine fighting it. Instead I occassionally fight it afterward when I regret the time lost.

From habit, I spend a great deal of time trying to normalize my circumstances. I still eat meals at the same time. Put on my socks. Brush my teeth. Go into work. Read the NY-er, etc. I still do all those things, but inside my body where I can scarcely feel it, there is a huge battle going on. I can’t appreciate how overwhelming this struggle is, but I am starting to feel the long-range depletions of the fight. Sleeping or lying on my bed in a dormant state for half the day is a sign that I am exhausted. Exhausted just from being alive. That seems so hard to believe after a lifetime of zipping around.

I want to thank everyone for responding to my request that you ask for my treasures that you enjoy. People have responded in such different ways! There’s the obvious response where someone says, “I’d like to have the prayer rug in your living room.” Other people have said, “I don’t want to talk about it.” To which I say, “OK for now. But I would like you to have some thing of mine as a memory.” It can be a slippery road to navigate. Just as many people don’t make wills in the mistaken belief that they won’t die, so asking for one of my objects won’t cause me to die. I will die, but not from giving away my things.

Along these lines, my therapist made the observation that I was a lucky guy to be able to give away the things I’d accumulated. “What do you mean?” I asked. “Well,” she answered, some people would be in the position of having to sell their things to raise money.” I’d never thought of that. So I am a lucky guy, that I can make this decision to give away my worldly goods without a thought to their cost or value. I have loved them, and I trust that you will also.

2009-06-07T21:29:00.000-07:00

June 6th, 2009: Today I took an important first step in dispersing my worldly goods. Mary Lawrence Hicks, who I met on the HIV Planning Council had asked me if I would donate some items to her fundraiser for the Sojourn Chaplaincy Program at San Francisco General Hospital. I immediately said yes, but it wasn’t until later that I realized that most of what I would donate should come from my home in Glen Ellen.

As I look around and start to plan how to divest, the property in Glen Ellen stands out as a place that is no longer a part of my shrinking life. It’s hard for me to drive up there, and once there, my home has been rented and is now happily occupied by someone else. Although my land partner Ann has expressed every welcome for me to stay, I don’t participate there anymore. I look at the grounds and see a beautiful piece of property. I can remember working on that land, but now there’s not a twinge of desire to get started with the gardening, wood splitting, koi pond cleaning or any of the other tasks that once bound me to the place. I look around my house and remember the plans I had to remodel the rooms. That won’t be happening; at least not by me. I am very glad that Francine, the mosaic artist who rents my house, is happy there. She’s settled in well.

After moving furniture down to Glen Ellen when my parents left their home last summer, I will now be moving that same furniture up to my sister’s home near Seattle. But hey, it’s easy to find a good person to move furniture.

But Glen Ellen is hardly the sum of my worldly goods. There are also the rugs, photographs, textiles, etc. that I’ve accumulated in San Francisco. It isn’t a large quantity of stuff because I’ve collected to fill a limited number of rooms. Still, it needs to be disbursed. I am not taking anything with me.

I have some thoughts about giving things away. But I would also appreciate it if you would let me know if you want something. I can’t promise that you’ll get it. I may have already told someone else that they may have it. However, if you have always wanted to live with my wonderful red leather chair that faces the park, please let me know that. I bought the chair so that my friend Betsy could look at the trees while we were visiting. Betsy, would you like the chair?

I am counting on you to speak up. I am not clairvoyant. Again, I can’t promise you will get what you ask for, but you have a much better chance if you say something. You will not be rude, premature or presumptuous. This blog posting gives you license to ask. Otherwise, I’ll just donate it. By the way, this dispersion is about giving. My things are not for sale. I would like you to have them if they give you some of the pleasure that they have given me. I don’t need to get rid of everything by the end of this week. I’ll keep you posted on when it’s a good time to get things. I’m guessing four to six months from now. I’ll keep a list of who asks for what, and it will help me feel better knowing that I have organized this part of getting lighter.

2009-06-04T23:22:00.000-07:00

June 4th, 2009: After more than a week and a half of pain-free health, I went to work on Wednesday and promptly did a U-turn. I couldn’t concentrate, and although I was not in pain, I could only imagine returning to bed. The rest of the day and night I slept, punctuated by a couple of phone calls. Thursday, I got up and went to work. After an hour at my desk, same thing: I returned home mid-morning and went directly to bed. I couldn’t figure it out. I wasn’t in pain. And I had incentive to stay awake: a lunch with my friend Betsy at Zuni and a late afternoon visit with my friend Jeremy. I felt a bit like Monserrat Caballe; as her career progressed and her health crises forced her to abandon many engagements, she earned the nickname of La Cancelatta. Mid-afternoon, I felt a twinge of pain in my left temple and immediately understood: I was having a migraine headache. So slight on the pain scale that I hadn’t associated my two days of fatigue with migraine symptoms, nevertheless that’s what it was. I took one of my pills that make them go away and sure enough, within an hour I awoke from a light nap saying, “Hey, it’s me. I’m back.” And so I am.

Since this weekend’s performances of Handel’s L’Allegro, etc. I’ve been listening at home to the oratorio (which includes the same soprano—Christine Brendes—on both the CD and in the Zellerbach Hall performances). Over the past six or seven years, I have become increasingly Handel-devoted. It’s a great time to do this, because at no other time in history except for living in London during Handel’s reign could you hear so many of his works in performance.

Although today we miss the exceptional voices that animated Handel’s productions, we do have some notable advantages as well. We now have countertenors. We have very talented singers who increasingly include the baroque in their repertoires. We have more productions of Handel’s works than ever before. And, perhaps most important to me: we have records, tapes, CDs, DVDs and iPod technology that allows for repeated listenings and viewings. The latter has been indispensable to me. For example, I have seen six productions of Giulio Cesare, but thanks to records and CDs, I have listened to it hundreds of times and that repetition has allowed it to settle into the marrow of my memory.

The point of all this is that my musical enthusiasm has gravitated to Handel over the past few years. His music has become, increasingly, the most beautiful sound that I am able to hear at this point in my life. In my teens and twenties, it was Mozart and Beethoven that I loved and listened to. Mozart was my path into opera and Beethoven anchored my understanding of the symphonic and sonata form. Then, in my thirties, I moved into Wagner and Richard Strauss. This took some work, but I worked and was vastly rewarded. In my forties, I discovered Verdi, Rossini and the bel canto tradition. My fifties mixed everything plus the addition of Handel. It’s interesting to see not only what I’ve had time to absorb but also what’s missing. Bach. In conversation with my friend Bob Graham a couple of weeks ago, I totally related when he said, “I don’t think I’ve been grown up enough for Bach until now.” Yes, I would echo that. There is some Bach that I’ve known for a long time: the Brandenburgs, the Goldberg Variations, St. Matthew Passion, the cello suites. But that’s it. For now, Handel nurtures me at a very profound level, and I am grateful.

Several years ago, when I was doing my series of past life regressions with Marilyn Zschau, I retrieved a lifetime from turn of the 19th Century Russia. I was a secularized Russian Jew, a law student in St. Petersburg. I hated living in Czarist Russia, so I emigrated to America. At the time, I thought I was following my girlfriend who had similarly moved with her family, but the larger reason was to experience more freedom and to come to the melting pot to contribute my talents and enthusiasm. I started a legal publishing company, married my girlfriend, had three kids and went to the opera, dined at Delmonico’s on special occasions and visited Niagara Falls. I taught English as a second language and was a deep believer in the American Dream. Then, in September, 1918, I got a cold and was dead within a few days. I died young in my life; my children weren’t grown yet. After I came out of the hypnosis session, Marilyn asked, “Why did you die so young?” I immediately knew the answer, and said, “I died young in that life so that in this life when the AIDS epidemic came along, I would have empathy for guys who were leaving in the middle of their lives. I would understand the poignancy and sadness of their early passing, and I would be a better caregiver. Just in the past week that knowledge has come back to me as I contemplate dying early again. Not as early as the last time (I was in my early 50’s during my American émigré lifetime). But still, this current leaving seems young to me. So what am I learning this time? And to what purposes will it serve in my future?

2009-06-02T22:30:00.000-07:00

June 2nd, 2009: Sitting at my desk this morning, I realized that I needed a serious treat. Easily done! That would mean going to lunch at Boulette’s Larder, my favorite place to savor interesting food. I wanted to catch up with Lori and Amaryll who run Boulette’s; I had talked with them during the intermission of Mark Morris Dance Group’s Sunday performance of L’Allegro. Such a treat to see both of these accomplished women in a totally different context. They are both so friendly and gracious. I consider Amaryll a highly accomplished chef. She has done far more to educate my palate at this time in my life than anyone else, and I am grateful.

It turned out to be a wise decision. I had a chilled avocado and cucumber soup with the freshest hand-patted tortillas with thin crispy outsides and soft centers of heated corn. Then, poached salmon that was light and custardy, almost like a mousseline. Although I had no room for dessert, Taquin my waitperson brought a tasting of lemon verbena ice cream with strawberries. Yummmmmmm!

Then a quick check-in with Amaryll. We compared notes about what moved us during the dance performance; both of us were thrilled by the use of scrims early on to create layers of dancers on stage, and then a static period close to the end when the entire company was motionless, looking up to the back of the stage, enraptured by full-throttle organ music. No dancers moved, and yet the action was expansive and profound.

This evening I talked with my Dad about my cancer. Fortunately, my sister had spoken with him recently, giving him news about the tumors’ growth. His ability to grasp my condition ebbed and clarified and ebbed again. He kept asking what he could do. I said, “Love me.” He assured me that he did. Many tears. I hope to go up to see him in July as well as saying goodbye to the other people I know in Portland. That will probably be the last time I see my Dad and many of the people I grew up with and went to school with. It’s a trip I really want to make.

As for the China trip, I don’t know if I’ll be able to do that. I would probably go in September or October and that’s a long way off. Yesterday morning as I woke up I was musing about how I want to see China before I die, and I realized that I might have another option. This strange, pleasant and very forceful concentration on being in China that has been surging from my very center may, in fact, be a yearning that focuses on that country as the place where I am born next. I feel so drawn to China and there are many things that I’ve learned in this life that could be useful there. Also, I know from past experience that there is much that China has to teach me. We’ll see. And who knows about the time factor; will I be born into the future or the past? So much to learn, and I do enjoy the speculation.

2009-06-01T23:27:00.000-07:00

June 1st, 2009: What a fine weekend, thanks to Mark Morris Dance Group, the Café at Chez Panisse and all the people I spent time with over the weekend who enriched my life at dinners or tea at my home. My two visits to L’Allegro, Il Penseroso ed Il Moderato left deep impressions on my soul.

My primary care physician Lisa also went to a performance and I wrote to her earlier today, “I am sorry that I missed you at the Saturday performance of L'Allegro. I went on Friday night and Sunday matinee. I thought Christine Brendes really distinguished herself as the soprano in the vocal quartet. Her final duet accompanying the line dance is probably the high point in the piece for me; it is so stately, dignified and full of feeling for the natural world. How Mark was able to translate the beat in the music by having the dancers slightly drop with a bend in the knee while traversing those linear patterns is one of the 10,000 miracles of that piece for me. It is a masterful work. The hunting scene comes out of nowhere and suddenly teaches us how to see dancers as trees, shrubs, foxes, dogs, aristocrats, and we learn how to do this within seconds. It's astonishing. This time, I was particularly moved by Julie Worden, long blond hair, green dress. The long lines of her arms were particularly expressive. And David Leventhal's lark is always a joy He is so twittery, so gay, so eternally youthful. David was the first dancer in the company that really got my attention. And now, thanks to repeated viewings, I know all the performers. I have to say it was poignant, at times overwhelmingly so, to see this piece again, quite probably for the last time. It is so beautiful. It gives me so much. I receive so much from it. Of course, I want more.”

Yes, I want more. That’s been a big motif of the past few days. The visit with Dr. Jahan on Friday really clarified for me that I am into my terminal illness. As people remind me, miracles do happen, and maybe I’ll get better. That would be lovely. It’s not, however, something I am going to plan on happening. I sense there’s such a balance between being realistic about my health and at the same time not wanting to call in suffering and pain. So my reality checks are: am I depressed? Do I push away life’s surprises and daily gifts? Am I sabotaging myself? I was depressed in the early 90’s for several months, and I can happily say that none of that dreadful mix of extreme agitation and physical paralysis is present now. I am episodically sad more than I used to be. My sadness feels deep, and appropriate when it arrives. Most of the time, I’m not sad at all. I love my life, and it’s been a very rich, exciting life. It’s painful to know that it will end soon. But I’m still engaged by my friends’ lives. I continue to read with avidity, listen to music and go through the ups and downs of daily living. I still enjoy being me. My affect doesn’t feel flat or forced.

I am starting to plan, and this week’s effort is to draft a list of the things that I want to complete in the next months. Some of the things are dependent on other events happening first. Some tasks simply have to be done. I am so grateful for my experience with project management. List the tasks, put them in order, assign dates and contingencies. Enlist other people to help when needed. As my friend Eileen observed this afternoon. “You can put together a plan and then watch it change.” True enough. My reason for planning is that my mind is starting to work on lists of things to do. Get rid of Bianca, my car. Sort out papers. Give away rugs, glass, books, photographs, textiles. Divest, divest, divest! My plan is a counterbalance to feeling overwhelmed by so much to do. When I have a plan, the tasks get done.

It’s astonishing to move this fast, psychologically. A few weeks ago, I regarded myself as someone with an illness who was dedicated to getting better. Now, I see myself as a having an illness that will end my life sooner than later. With this new perspective, come new priorities. During the L’Allegro Sunday matinee, I watched with awe as Mark Morris led me through the hunt sequence where two foxes hid from a pack of dogs in a forest of dancers frozen to simulate trees. As the foxes outwitted the pack and a smile broke across their faces, I suddenly burst into tears. I will never see this again. I will never see this again.

2009-05-29T18:06:00.001-07:00

May 29th, 2009: I’m sad to have to write these words, but in the interest of keeping you informed of what’s happening with my health, here we go….

The meeting with Dr. Jahan today was sobering and more. All my tumors have grown in the past two months. One lung tumor is now over a centimeter across which means its size has effectively doubled since the last scan at the end of March. In addition, the spot on my liver which had been taken off the table as a problem is now back on the table at some 4.5 centimeters.

The short term good news is that I have a lot of quality of life and as of this week, not much discomfort. However, this will change and it will change sooner rather than later. There are no plans for immediate intervention with chemo or radiation. Dr. Jahan reasons that both palliative treatments would diminish my quality of life. Since I am not in pain, why superimpose a treatment when none is needed—yet. I have an appointment with Dr. Jahan at the end of the month to check in about my symptoms.

For mid-term treatment, we discussed chemo as the strongest possibility. Dr. Jahan favors Gemcitabine which is administered over a 90 minute clinic visit (and may be given with another chemo drug). There is a clinical trial program in Santa Monica as well as a program here at UCSF which we can investigate when it comes time to actually schedule appointments. As for radiation, it may be used, it may not be practical. To be determined.

Dr. Jahan repeated that pain is the issue I’ll be navigating. In the near term, the growth of the pelvic tumor may set off pain as it presses against surrounding tissue. In addition, we talked about making sure that I have a DNR (Do Not Resuscitate) order in his office and at home. His concern is that I will have a sudden emergency and the responding medics will do everything possible to keep me alive even though that’s not my wishes.

Biggest message along with the tumor growth is: Do the things you need to do to have peace. Take care of business. OK, I can do that.

With that encouragement, I am off to see the Mark Morris Dance Group perform the unforgettable L’Allegro, Il Penseroso ed Il Moderato. This will be a great counterbalance to the visit with Dr. Jahan.

2009-05-28T23:11:00.000-07:00

May 28th, 2009: It’s been a good week with not much discomfort. I’ve started logging every time I take morphine sulfate for breakthrough pain, and so far this week, I’ve only had one pill in the middle of Monday night. I’ve promised myself not to be stoic about pain; if I need medication, I’ll take it.

Tomorrow is my meeting with Dr. Jahan and I am both excited and calm. Really, there’s nothing to do other than show up. I’ve sent him questions in advance; he’s sent me some replies in advance. What remains is to read the scans, evaluate the growth—or not—of the tumors and discuss what happens next.

This is a big deal weekend for me with entertainment and dining. I have tickets for the Friday night and Sunday matinee performances of Mark Morris Dance Group’s L’Allegro, Il Penseroso ed Il Moderato. Poems by Milton, oratorio by Handel and choreography by Mark Morris. Back in the early 90’s, my friend Patrick Glennon saw this piece and said that it was the best dance he’d ever seen. At the time, I thought he was being really excessive. However, I remembered his enthusiasm so when it returned in the late 90’s I got a ticket. I was totally unprepared for the power and beauty of the dance, and I like the work so much that I have traveled to see it. Ann and I have gone to Chicago and Seattle for performances as well as seeing it as often as possible at Zellerbach in Berkeley. And after the Friday night performance, a late dinner at the Café at Chez Panisse—yummmmmmmm.

My friend Laura is visiting from Chicago to do some work at Stanford library and it will be great to catch up with her. We met not that long ago at the Optimum Health Institute. I'm going to dinner on Saturday night with people I worked with at the HIV Planning Council. Then, the matinee performance of L’Allegro on Sunday with dinner afterward at Sea Salt with my friend Adrienne. Since Adrienne lives most of the time in Mendocino, I don’t get to see her nearly often enough. Dance, food, visiting and so to bed.

Weaving through all of this entertainment will be the results of the scans. I’ll post what Dr. Jahan has to say as soon as I’m able to so that all of you will have a better idea of where my health is headed and the probable treatments. I am hoping to have a better sense of how treatments (or lack of them) will block my timing for the next few months. I’ve put most plans on hold other than a trip to Portland in early July. Until I have a better handle on my health, I have resisted booking a trip to China and other events that are best planned for sooner rather than later. When I am in discomfort, I worry about loosing my ability to walk comfortably or walk at all. If I go to China, it has to be while I’m still able to walk.

2009-05-24T22:50:00.000-07:00

May 24th, 2009: What a pleasure to have a day where pain is minimal. I feel energetic about reading, going grocery shopping, cooking and generally enjoying being in my body. That is such a fine contrast to the drugged exhaustion of Friday and Saturday morning.

I have heard from several people that as I move into more acceptance of having a cancer that will not be cured, that this sets off a crisis of how to support me in this new definition of my health. For one thing, it’s scary to know that someone you care about is facing a mortal illness. There’s understandable confusion about what to say. There’s a fear of saying the wrong thing.

As a hospice caregiver, I can relate. I have certainly walked into a patient’s room and said something that was, in retrospect, inappropriate. One blunder occurred when I visited a resident at Maitri after a two week hiatus and during that time he had declined considerably. As I walked into his room, I was so shocked at his depleted self that I squeaked, “Hey! You look great!” Neither of us was deceived. My point here is not that I can make mistakes too; rather, not knowing what to say or saying the wrong thing is not the end of the world. Trying to cover up my shock did not end our relationship. It was an awkward and moment that was easily forgiven.

More importantly, what we can do for each other—I’ll do this for you and you can do this for me—is simply witness each other in the time remaining. Here’s how my friend Ellen expressed it in an email that arrived yesterday. “It's humbling to think how best to companion you in these difficult days. How can I know your reality? I can't, and there is no "right" way to be and no right thing to say--so it is a privilege to be called your witness. To witness, to be present in silence, to speak soul to soul is a proper offering. I treasure your love.”

So, let’s move forward with the understanding that my illness is challenging not just physically for me, but emotionally for all of us. And that my friendship with each of you has a stability that’s developed over time.

I’ve heard back from Dr. Jahan about many of the questions that I addressed to him earlier in the week. I had thought that we’d go over the answers during my visit next Friday, May 29th, but no, I get previews. Here’s what we may discuss depending on what the scans have to say. Regarding my questions about medical treatments, Dr. Jahan wrote:

“The next chemo option is somewhat easier that the inpatient Ifos/Dox. Each cycle is administered over a 2 week period. Week 1/day 1 you receive gemcitabine over a 90 min (or so) period, the nothing else until week 2/day 1 when you receive gemcitabine again over 90 min and docetaxel over 1 hr. Week 3 you rest at home, and then week 4 becomes the new week 1 for cycle 2. The chemo is generally well tolerated, fatigue is the main effect that you will feel, but your blood counts will be affected also. We would try to do 3 full cycles (each 3 weeks), and then recheck scans. We generally expect up to a 40% chance of seeing some kind of shrinkage, but it is by no means a sure thing."

Since I have been going into work every day, I’ll have to find out more about what “rest at home …” means to the typical patient.

Regarding pain management, he wrote: "You can increase your breakthrough morphine (2 pills or 30 mg every 2-4 hrs as needed), I plan to have you see the Symptom Management Group at UCSF Mount Zion (Dr. Rabow and his group—they’re wonderful). They can help fine tune your regime further, if that's ok with you.)"

Again, the next treatment options depend on the results of the scans. The pain management issues apply regardless of tumor growth.

2009-05-23T19:37:00.000-07:00

May 23rd, 2009: The past couple of days have been dominated by the two issues that most mangle my health now: poor pain management and fatigue. On Thursday, I met my friend Ellen for a visit at the Asian Art Museum. We began at the South Asian galleries which start the circuit through the museum, but by the time we had passed through the Indonesian and Tibetan rooms and were into the Chinese jade gallery and the old bronzes, I was starting to feel a level of pain that just wouldn’t go away. I could continue to look at the treasures, but I noticed that my conversational skills were reduced to “Really?” “That’s wonderful” “How exciting” and my old standby: “I bet.” I just couldn’t add to the dialogue.

Then, my capacity to enjoy the art work started to plummet. By the time we were in the monumental Chinese statuary gallery, I could barely look at the artwork. I told Ellen that I was in a lot of pain and had to fast forward our tour. She understood. On the way down to the museum restaurant for lunch, we stopped to look at some porcelain in lucite cases flanking the grand staircase. At the far end of the open gallery surrounding the stairs, we found a comfy couch and sat down. As I relaxed into the cushions, the pain surged and I started to weep. I have been in the new Asian museum thirty or forty times, but never with such overwhelming pain. In that moment, surrounded by beautiful architecture and held by a close friend, I felt helpless, sad to be so diminished and totally overwhelmed. Those moments on that couch defined for me how far my illness has taken me into out-of-control moments. Lunch was a rushed event for me. In spite of my feeling that all time with Ellen is precious, I desperately wanted to be home, in bed, asleep. So that’s what I did as quickly as possible.

It surprised me that when I did get home, and got into bed and slept my sleep was not the usual hour long nap. I slept for several hours and had to force myself to get up and have dinner. It felt like one of the days following my discharge from chemo: my two dominant sensations were nausea and exhaustion. For the past few months, fatigue has been a daily and manageable event: when I’m tired, I nap, usually in the afternoon. But nausea has not been a part of my life since mid-January.

Friday, I awoke groggy and stupefied after an excess of sleep. Staying in bed was not an option because I was scheduled to get my latest CT scans at UCSF. I had asked to be scanned five weeks earlier than planned, because I felt physically uncomfortable. I didn’t want to miss getting some actual pictures of the tumor and measures of it’s growth.

Let me say that through the past several weeks when I have been uncomfortable and have felt like my tumor was growing, I haven’t REALLY known if that is the case or not. As I’ve remarked before, back at the end of March when I was scanned, I knew that the tumor had grown and I was wrong. It had not grown at all. But what I experience in my body is a strong sense that the cancer is getting larger because the pressure from the tumor hurts more. That daily, physical pain makes me anxious. My anxiety causes me to try to assess what’s going on and what I can do to manage that. I am looking forward to seeing Dr. Jahan next Friday, May 29th for the best of reasons: he will read the scans and we can plan the next steps in my treatment.

After going on and on about pain, not knowing, etc. let me say that well over half of my conscious time I am comfortable and not aware of the tumor. That’s important: I am not aware of pain most of the time. Additionally, I have been lucid through most of my illness. I can analyze computer applications at work and propose effective solutions to problems. I continue to read a lot—reasonably dense magazines as well as books. I can retain my concentration and remember what I’ve read.

Recently, however, I have largely lost my ability to meditate. This started in earnest about a month ago. Remember the healing center where I would lie on the warm marble slab and receive healing visits from animal, vegetable and mineral spirits? I have lost the ability to get into my healing center. I just can’t keep my awareness focused. I forget where I am, and my concentration doesn’t move forward. It reminds me of when I couldn’t listen to music last October and November. Music was so irritating and confusing that I stopped listening. Then, over a period of a couple or three weeks, my ability to listen and enjoy returned full force. Now, my hearing feels as rich and nuanced as ever. I hope that my ability to meditate returns as well.

In the past couple of weeks, I had asked my primary care physician about how to manage intermittent pain, and she suggested trying oxycodon. On the way to the scans, I picked up my prescription for oxy to use for pain breakthrough on an as-needed basis. After the scans were over and I had left work, I returned home and took my first oxycodon pill to relieve the pain I was feeling. From the moment I swallowed the oxycodon until mid-morning the next day, I was in an altered state of too-much-drugs. Mostly, I slept. But as my sleep continued across the hours of the evening and night, I also became groggy with sleep. When I awoke this morning, I could not get out of bed. Fortunately, my friend Philp had called me twice during the week to figure out when we could get together. I called him back and we agreed to visit this afternoon. With a visitor coming over, I knew that I’d have to get up. So I did. The rest of today—it’s now 4:00 in the afternoon—has been OK. No pain. No nausea. No exhaustion. I will take a nap in a few minutes, but I have felt lucid and pain free for most of the day.

I have to say, this is a demanding time for me. I don’t really know what’s going on inside my body. One of my biggest resources—meditating—has gone into recess. I am fearful that my tumor is growing and that I will die from this illness. All this interspersed with normal life where I look good, have a nice head of curly hair, have to shave daily again, can take on new projects at work and do well, am eagerly listening to new Handel operas (as well as enjoying the musical repertory of my last forty-five years), look forward to seeing friends for coffee, lunch and/or dinner, and generally continue the life that I have built for myself here in San Francisco. It’s all of the above—apprehension and functional behavior—every day.

2009-05-21T00:28:00.000-07:00

May 21st, 2009: Based on complaining about my level of pain in my pelvis, my MRI and CT scans have been moved forward to this Friday, May 22nd. Then, the following Friday, I’ll meet with Dr. Jahan and we’ll go over the results. As I said, I am uncomfortable and as a result, I’ve re-evaluated myself from a person with a cancer that can be cured via medical means or diet or all of the above to a person with a cancer that can receive palliative care for a period of time. This revision opens up many, many new questions that I haven’t asked or had to face before this.

I’ve gathered my questions into clusters and sent the first batch to Dr. Jahan. If the scans indicate tumor growth, then we can use these questions as a starting point to talk about my next treatments. If the tumors are not growing, then I have a pain management issue. We’ll find out in a little more than a week.

Here are the questions that I’ve sent to Dr. Jahan:

Medical treatments:

What are alternate treatments to the five day regimen of Ifosfomide and Doxyrubicin?
What are the high-level overviews of each treatment (how administered, duration of treatment, side effects, effectiveness of treatment, other key statistics)
What is the best next step given my current tumor size and growth from last scan?

Pain Management options:

What is a good supplement to my current 150 mcg of Fentanyl for breakthrough pain management? At this time, I have 15mgs of Morphine Sulphate tablets for breakthrough medication. One pill doesn't do much to relieve pain. Should I try using Percoset? Note: I have also sent this question to my primary care physician, Lisa Capaldini, for her consideration.
My ideal breakthrough medication would (1) kick in within an hour (2) remove most pain without making me too groggy (3) start to ease off after 3 to 5 hours.

Impact of the Growing Pelvic Tumor:

If the tumor continues to grow, how will this impact my ability to walk?
What will be affected? The muscle in my leg that the tumor has grown into? The size of the tumor that may affect my ability to move my leg?
What happens to people with tumors that grow in the pelvis? Do they become wheelchair-dependent?
What’s the long term impact on my ability to urinate and have bowel movements?

Impact of the Lung Tumors:

What is the status of the spots on the lungs?
My understanding is that these lung tumors would be my cause of death since the lungs are a vital organ whereas the pelvic tumor is not likely to kill me. Is this correct?
What is the prognosis for the lung spots?

And then we'll put the answers to these question together to get a sense of how much longer I can expect to live. This will be a guess, of course. However, it's an important estimate because I can start planning my life with more probability. Until now, my basic assumption has been that I'll get better so life can continue per usual. I no longer believe that to be true.

2009-05-13T20:08:00.000-07:00

May 13th, 2009: In conversation with my friend Ruthann last night, I realized that a big part of my anxiety, sadness and weeping over the past weekend was grieving the loss of my hopes to become cancer free. Although that could happen, it isn’t happening right now, and this weekend helped me to face that fact.

I’m acutely aware of not knowing what will happen next. But that doesn’t mean that I don’t want to surmise or plan or make guesstimates. After all, one of my professional roles is to manage projects, and I see my health care as a project. Also, it's the time of year when I start ordering tickets for 2009 and 2010 local performances. Will I go to SF Opera next year? What about the ballet season? Should I get tickets for Mark Morris's The Hard Nut during the holidays? How much future can I image for myself? I need more information so that I’m not prey to the worst case scenarios of my fertile imagination. With that in mind, I wrote to Dr. Jahan this morning to set the tone for our next meeting. Here’s the letter:

Dr. Jahan:

When I last saw you on April 1st, you gave me the happy news that my pelvic sarcoma and the spots on my lungs had not budged in growth. We agreed to have me get a new set of scans on July 6th and then I would see you shortly afterward to read the results.

I am writing to say that I don’t have any specific health emergencies, but I am experiencing a serious degrading of overall comfort and ease. It feels to me like the pelvic tumor has grown and it’s now more uncomfortable. In the last month, I’ve adjusted my medication somewhat: I went from 100 mcg of Fentanyl to 150 mcg in mid-April and then, briefly, up to 200 mcg at the end of April. 200 mcg proved to be too much; I was woozy and exhausted so I dropped back to 150 mcg and am pretty comfortable at that level now.

My need for sleep has skyrocketed and I now sleep nine to ten hours a night plus an hour or two of afternoon nap. Perhaps this is normal for a person who has this many opiates in their system, but it is a new experience for me. It would be good to get more information on what’s “normal.”

I still go to work every day, and that continues to be a gift in my life. I can concentrate, be effective, not forget things, and I love the interaction with my colleagues.

However, in the past few days, I have been haunted by the probability that I am not getting better. It sure doesn’t feel like my tumor is going away. So I am checking in with you to ask, “Should we do the scans earlier?” If the tumor is moving and it feels like it is, then I want to know that sooner rather than later.

As a result of not feeling better, a host of questions have started to assert themselves about where this tumor goes. Does it just keep growing? Will this compromise my mobility? It would be good to have a better view into the future and that’s not something I can conjure because I have no background in what tumors do.

It would be helpful for me to see you before the scheduled scans in July. I’d be happy to organize my thoughts into a list of questions that I send to you in advance. That way, you could address my concerns.

Thanks for all your help with this,

George Stevens

It’s time to find out more about what’s going on in my body and what can be done to manage the tumor. I’ll keep you posted as I hear more.