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.
Sunday, September 6, 2009
Thursday, September 3, 2009
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.
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.
Tuesday, September 1, 2009
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.
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.
Saturday, August 29, 2009
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.
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.
Thursday, August 27, 2009
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.
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.
Wednesday, August 26, 2009
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.
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.
Tuesday, August 25, 2009
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.
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.
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