October 28th, 2008: A good end to a long life: my boyfriend Lorenzo’s father passed away yesterday afternoon at age 92. It’s been a dance for the past few weeks with Lorenzo, balancing time given to his father’s illness and my own health issues. I would say that we’ve danced very well together. May his father be free from suffering.
More forward motion today toward the start of treatment. Appointments have been booked for a central line to be installed in my upper chest, and, perhaps the same day—election day!—I may check into the hospital for my first five-day round of chemo. It will depend on whether there is a bed available.
Over the past weeks, I’ve slowly realized that I have been living with this tumor for a long time, at least two years by my body memory. An insidious feature of pelvic sarcoma is that you don’t know you have it. It feels like a weird sciatica or a sore butt or a painful hip, etc. depending on where it’s located. Even after my hip replacement—which was needed, very definitely—I have the same ache in my hip and pelvis. It’s been strange to go through the surgery with all my hope to easing the pain, only to confront the real pain. Now that the sarcoma tumor board and the melanoma tumor board have had a chance to review the tests, images, biopsies and scans, I am very anxious to begin treatment. I feel like this cancer has had a very long life, and in recent days I’ve actively talking with it about leaving. I tell it that I can’t continue to be a host to its growth. We all want to live, but my cancer will have to go somewhere else to find longer life.
My end-of-day reward to self: a trip to my healing center and the anticipation of tonight’s healer: Animal? Vegetable? Mineral?
Wednesday, October 29, 2008
Tuesday, October 28, 2008
October 28th, 2008: Today, after first hearing his name on September 23rd, I got to meet Dr. Thierry Jahan. The visit started off well and improved from there. By the time we left an hour and a half later, both Eileen and I were buzzing with purpose and plans. I had imagined Dr. Jahan as being somewhat severe. In fact, there was a lot of laughter and delight during the visit. Surprising, considering the content of our talk. First, he talked about pain management and suggested a basic principle: take medication sooner rather than later. Then, he walked me through the next few weeks. First, I’ll get a central line installed for the chemo and other fluids that will be part of the treatment. Then, I’ll check into the Parnassus UCSF hospital for five days. During my time there, I’ll get rounds of Ifosfamide for two hours a day for four days. Also Doxorubicin. Find out more about these drugs on Google.
I will loose all my hair. “I’ve always known that I would never be bald,” I said. “Wrong again.” “Yes,” Dr. Jahan agreed, “you will be bald. But unlike me, your hair will grow back,” and he rubbed his shining crown. The day after chemo, I’ll get an infusion of Nulesta or Neuprogen which stimulates the growth of white blood cells. Then, three weeks of rest. Then, another week of the same regimen as above. At timely intervals, I’ll be scanned and the tumor growth will be compared to the baselines that have already been measured.
Unlike the hip replacement, I don’t know what to imagine about my time between chemotherapy treatments. I don’t know how much fatigue I’ll feel. I don’t know how I’ll deal with nausea and the constellation of food and weight issues. However, I do know that I’ll need help. Over the past two months, people have consistently asked, “What can I do?” Up until now, there really hasn’t been much to do. My support has been about enjoying visits from people; sitting in my living room and drinking tea. Currently, my plan is to organize a support group of people who are able to help out with practical things like grocery shopping. But there are also forms of support that vault over physical distance.
Take, for example, chemotherapy. To me, chemo is the opposite of how I live most of the time. Normally I eat the healthiest, most appetizing food to nourish my body. With chemo, I am swallowing poison to kill toxic tissues. That’s a lot of negatives. I know that a chemo ritual would be helpful to me. This ritual would involve welcoming the chemo into my self, thanking it for its aggressive behavior, being grateful that it can distinguish cancer cells and end their lives. Also, the ritual would include telling the cancer that it can’t find a long-term home in me. Anyone in this circle of people would be welcome to send a one liner, a mantra, a motto that could be incorporated into the chemo ritual. And, when the time arrives to open the drip line and have the fluid move into my bloodstream, I would welcome it with the words that have been aggregated from many friends.
I will loose all my hair. “I’ve always known that I would never be bald,” I said. “Wrong again.” “Yes,” Dr. Jahan agreed, “you will be bald. But unlike me, your hair will grow back,” and he rubbed his shining crown. The day after chemo, I’ll get an infusion of Nulesta or Neuprogen which stimulates the growth of white blood cells. Then, three weeks of rest. Then, another week of the same regimen as above. At timely intervals, I’ll be scanned and the tumor growth will be compared to the baselines that have already been measured.
Unlike the hip replacement, I don’t know what to imagine about my time between chemotherapy treatments. I don’t know how much fatigue I’ll feel. I don’t know how I’ll deal with nausea and the constellation of food and weight issues. However, I do know that I’ll need help. Over the past two months, people have consistently asked, “What can I do?” Up until now, there really hasn’t been much to do. My support has been about enjoying visits from people; sitting in my living room and drinking tea. Currently, my plan is to organize a support group of people who are able to help out with practical things like grocery shopping. But there are also forms of support that vault over physical distance.
Take, for example, chemotherapy. To me, chemo is the opposite of how I live most of the time. Normally I eat the healthiest, most appetizing food to nourish my body. With chemo, I am swallowing poison to kill toxic tissues. That’s a lot of negatives. I know that a chemo ritual would be helpful to me. This ritual would involve welcoming the chemo into my self, thanking it for its aggressive behavior, being grateful that it can distinguish cancer cells and end their lives. Also, the ritual would include telling the cancer that it can’t find a long-term home in me. Anyone in this circle of people would be welcome to send a one liner, a mantra, a motto that could be incorporated into the chemo ritual. And, when the time arrives to open the drip line and have the fluid move into my bloodstream, I would welcome it with the words that have been aggregated from many friends.
Monday, October 27, 2008
October 27th, 2008: Eileen Lemus and I showed up for my appointment with Dr. Daud this morning at UCSF. He told us that NONE of the pathology tests done on the biopsy tissue confirm that I have a melanoma. This means we are back to the original diagnosis of a sarcoma. I have to say, I felt punched. I had gone to clinic expecting to hear that I had melanoma tumors and that chemo could start very soon. I’m always amazed at how quickly I adjust to a diagnosis, and then, when it is altered, I shift again. But my adjustments aren’t immediate, they require some time. At this juncture, I asked Dr. Daud how much time I could expect to live if the proposed treatments don’t work. Would I have five months? Eight? “Oh, I would say at least a year,” he ventured. We agreed that these figures were not informed guesses since there are so many variables. Also, I am committed to receiving treatment with the goal of lengthening my life. A bright note in the meeting; the MRI brain scan I had on Friday showed clean pictures. No brain tumors! Since I am no longer a patient with melanoma, Dr. Daud and I said goodbye to each other. I have to say, I’ll miss him. There’s a sweetness and clarity about the guy that I found, well, healing.
This also means that I will meet—finally—with Dr. Jahan the sarcoma guru tomorrow in the late afternoon. We talked briefly with his physician assistant and she said that at this point, the plan is to start some seriously strong chemo, so strong that it requires hospitalization. Not sure when that will start, but I am hoping to work out a schedule at tomorrow’s meeting. I continue to be grateful that this strangely zig-zaging diagnosis did prevent me from having a major surgical intervention at the beginning of treatment. I think that would have hastened my death.
Emails and phone messages have indicated a strong interest among Healthy Geo readers about the imaginary healing spot I’ve created. Last Friday, I received two other visits. The first was from a plant, a sage green sphere with the structure of mistletoe. It said, telepathically, that it understood the branching structure of growth and that it had arrived to dissolve the metastasized cancers at various sites in my body. The second visit was from a vulture who explained that it could ingest highly toxic flesh and metabolize it with no ill effects. That said, the vulture painlessly slit open my lower abdomen with a claw and proceeded with amazing grace and delicacy to eat the pelvic tumor. There wasn’t a moment of discomfort or revulsion, rather, I felt very cared for by a master surgeon. With a nudge from its beak, my incision was closed, and it flew off into the sky. Interesting to note that even though tumor hasn’t been accurately identified, there are already forces at work to end the cancerous growths.
This also means that I will meet—finally—with Dr. Jahan the sarcoma guru tomorrow in the late afternoon. We talked briefly with his physician assistant and she said that at this point, the plan is to start some seriously strong chemo, so strong that it requires hospitalization. Not sure when that will start, but I am hoping to work out a schedule at tomorrow’s meeting. I continue to be grateful that this strangely zig-zaging diagnosis did prevent me from having a major surgical intervention at the beginning of treatment. I think that would have hastened my death.
Emails and phone messages have indicated a strong interest among Healthy Geo readers about the imaginary healing spot I’ve created. Last Friday, I received two other visits. The first was from a plant, a sage green sphere with the structure of mistletoe. It said, telepathically, that it understood the branching structure of growth and that it had arrived to dissolve the metastasized cancers at various sites in my body. The second visit was from a vulture who explained that it could ingest highly toxic flesh and metabolize it with no ill effects. That said, the vulture painlessly slit open my lower abdomen with a claw and proceeded with amazing grace and delicacy to eat the pelvic tumor. There wasn’t a moment of discomfort or revulsion, rather, I felt very cared for by a master surgeon. With a nudge from its beak, my incision was closed, and it flew off into the sky. Interesting to note that even though tumor hasn’t been accurately identified, there are already forces at work to end the cancerous growths.
Thursday, October 23, 2008
October 23rd, 2008: This blog has focused on my medical events, because that’s what people asked about over and over. They wanted to know how I was feeling and what was my health status? I ask those questions myself when I’m talking with someone who’s ill. But during this week of medical lull, I’m realizing that there are many places that I go daily that are very much about how I’ve responded to having cancer, although they aren’t specifically medical.
One of those places is a healing center that I’ve built for myself. You won’t find it on Aerial Google, but I imagine it to be somewhere on the “Lost Coast” in Humboldt County. The home overlooks the ocean, and, I’m happy to report that the weather is almost always fabulous. To enter the property, I walk up to a large redwood and step through into a protected reality. Then, it’s a quick walk to the house. So far, I’ve spent very little time indoors. Usually, I head for the courtyard. First, I disrobe and slide into a tub lined with turquoise pebbles. The water washes away the goo of the day. I dry off and settle myself on a chaise of white marble that’s been shaped and polished so the surface feels soft. I relax. Through my feet, I can look across the shallow garden to a gate. Presently, there will be a knock on the gate. When I hear the knock, I ask, “Are you here to help heal me? Only healers may enter.” So far, the response has always been, “Yes. I am here to help heal you.” The door opens, and the healer enters. They take many forms: human, plant, animal, or sometimes it’s a spirit in a wind or aroma. Some days more than one healer appears, although they usually do their work one at a time.
Today, for example, I worked with a man from the Amazon basin named Huatil (pronounced: Hua-teal).He was very energetic and initially curious about the garden but immediately set to work carving a wooden replica of my pelvic cancer. He rubbed the wood model with a greenish paste from his hip pouch and waved it in the air so that the paste started to dry. Then, Huatil built a fire on a large river rock in the garden and slowly turned the carving over the flames as if he was searing meat. After a bit, he placed the wooden replica onto the flames, banked the fires with sawdust and poked at the burning piece until there was just a pile of embers. Finally, he brushed the embers into a sack, tied the sack with a string, smiled and, job complete, left through the garden gate.
One of those places is a healing center that I’ve built for myself. You won’t find it on Aerial Google, but I imagine it to be somewhere on the “Lost Coast” in Humboldt County. The home overlooks the ocean, and, I’m happy to report that the weather is almost always fabulous. To enter the property, I walk up to a large redwood and step through into a protected reality. Then, it’s a quick walk to the house. So far, I’ve spent very little time indoors. Usually, I head for the courtyard. First, I disrobe and slide into a tub lined with turquoise pebbles. The water washes away the goo of the day. I dry off and settle myself on a chaise of white marble that’s been shaped and polished so the surface feels soft. I relax. Through my feet, I can look across the shallow garden to a gate. Presently, there will be a knock on the gate. When I hear the knock, I ask, “Are you here to help heal me? Only healers may enter.” So far, the response has always been, “Yes. I am here to help heal you.” The door opens, and the healer enters. They take many forms: human, plant, animal, or sometimes it’s a spirit in a wind or aroma. Some days more than one healer appears, although they usually do their work one at a time.
Today, for example, I worked with a man from the Amazon basin named Huatil (pronounced: Hua-teal).He was very energetic and initially curious about the garden but immediately set to work carving a wooden replica of my pelvic cancer. He rubbed the wood model with a greenish paste from his hip pouch and waved it in the air so that the paste started to dry. Then, Huatil built a fire on a large river rock in the garden and slowly turned the carving over the flames as if he was searing meat. After a bit, he placed the wooden replica onto the flames, banked the fires with sawdust and poked at the burning piece until there was just a pile of embers. Finally, he brushed the embers into a sack, tied the sack with a string, smiled and, job complete, left through the garden gate.
October 22nd, 2008: In the past few weeks, I’ve noticed a shift in my interests, especially food and music. I used to spend a lot of time anticipating and enjoying meals, regardless of whether I was cooking for myself or dining out. In the months prior to my surgery, I’d been going to lunch once a week at Boulette’s Larder in the Ferry Plaza food cathedral. The nuances and concentrated flavors in Amaryll Schwertner’s cuisine took my palate to a whole new level of refinement. I had never apprenticed myself to a kitchen before this, and the rewards were awesome. Since the surgery, I can still taste, but I have very little interest in pursuing flavors. True, my diet has changed dramatically: no sugar, no white bread, lots of fresh vegetables, especially green. As for music, the presence of opera in my daily life has evaporated. I can hear but I don’t listen. These days opera requires a level of concentration that I find very difficult to muster. Before, I felt no effort; my capabilities had been honed for decades. Along with the lack of desire is the lack of memory of desire. I not only don’t put on Figaro or Don Carlo, I forget that I own those recordings.
Now I have a new pleasure that happens when I’m talking with friends. If I were to name the dominant memory of my post-surgery weeks, I would say, “Telling people I love them.” My previous boyfriend Chester used to say to me, “Wow, you sure are gushy.” Meaning that I would tell people directly that I loved them and how much our friendship it meant to me. I’d reply, “Hey, when my friends started dying in the late 80’s and early 90’s, they’d tell me that they loved me. I learned to say that I loved them too. Then I started telling that to a lot of my friends, regardless of their health status.” In the past weeks, during phone calls, I’ll go through my current health bulletin and listen to what my friends’ are up to, and when there’s an opening I’ll jump in to tell people how much I care for them. How much I’ve learned from knowing them. How much I appreciate some sweetness or talent or special trait that is uniquely theirs. To me, that’s the center of the phone call. When I say those words, my body and feelings and memory lights up with the joy of knowing that person. It's a feeling that I want to prolong. And often, they respond with a warmth and perception that’s gratifying to hear.
Now I have a new pleasure that happens when I’m talking with friends. If I were to name the dominant memory of my post-surgery weeks, I would say, “Telling people I love them.” My previous boyfriend Chester used to say to me, “Wow, you sure are gushy.” Meaning that I would tell people directly that I loved them and how much our friendship it meant to me. I’d reply, “Hey, when my friends started dying in the late 80’s and early 90’s, they’d tell me that they loved me. I learned to say that I loved them too. Then I started telling that to a lot of my friends, regardless of their health status.” In the past weeks, during phone calls, I’ll go through my current health bulletin and listen to what my friends’ are up to, and when there’s an opening I’ll jump in to tell people how much I care for them. How much I’ve learned from knowing them. How much I appreciate some sweetness or talent or special trait that is uniquely theirs. To me, that’s the center of the phone call. When I say those words, my body and feelings and memory lights up with the joy of knowing that person. It's a feeling that I want to prolong. And often, they respond with a warmth and perception that’s gratifying to hear.
Wednesday, October 22, 2008
October 20th, 2008: Back to the UCSF cancer clinic this morning, and into my first meeting with Dr. Daud who specializes in melanoma treatment. For the first time, I was on my own this morning. After many visits, I think it’s best to have an extra set of eyes and ears, but I also have a good history of staying in my body while taking notes and talking with the doctors. Dr. Daud started by asking about my previous melanoma excisions done by dermatologists on an out-patient basis, first in 1997 and again in 2004. Since my margins were clean after the melanomas were removed, there was no follow-up radiation or chemo at either time. Then, Dr. Daud called Dr. Christman who had performed the 2004 melanoma removal. He found that she had sent the tissue samples to the UCSF pathology lab for healthy verification. It’s likely that the samples as well as the history of the removal—depth of tumor, etc.—were still on record at UCSF. Then, Dr. Daud promised to present my case to the melanoma tumor board that meets this very day. I’m also going to be presented at the sarcoma tumor board this Friday, Oct. 24th. All this attention is good.
Bottom line: it is still not certain what type of tumor I have. After Dr. O’Donnell’s open biopsy, the estimates lean toward melanoma. However, the biopsy results are still not back from the pathology lab. Given these unknowns, Dr. Daud moved forward and said, “Let’s suppose that what you have is a melanoma. We can talk about types of treatment.” So that’s what we did. He started by talking about the Immunological drugs, such as Interluekon 2 which is quite toxic and requires a stay in the Intensive Care Unit (ICU) during administration. Then, there are the chemotherapy drugs, some of which have been used for up to 30 years. Newer chemo drugs are also available, and they may be used in combination to maximize effectiveness. The caution is that two chemo drugs used together also multiplies the side-affects. Additionally, there are clinical trials that Dr. Daud participates in and I may qualify of one of those. These are experimental protocols testing new drugs or new combinations of known drugs. Point being, there are several treatment options.
It seems that there are genetic variants between melanomas that occur on the head and neck and melanomas that grow on the back (and possibly others as well that didn’t apply to our discussion). My melanomas were both on the upper back and these tumors are characterized by the presence of BRAF inhibitors. Check this out for yourself on Google.
So, what’s the plan? Dr. Daud’s strategy is to first verify that this is a melanoma. If yes, then we can start me, say, early next week on a chemo combination that has a good probability of being effective. Baring a violent allergic reaction (something that isn’t a part of my medical history) I would complete the six to eight week course of treatment. Scans would monitor whether the tumors are responding or not. If the tumors don’t substantially decrease in size, then we proceed to the next drug regimen. All of these courses of treatment have their own pitfalls with fatigue, nausea, and the lurid list of chemo side effects. If this is not a melanoma, then I move back to the sarcoma side of the house and consult with Dr. Jahan who was initially recommended ages ago (four weeks, actually).
The effectiveness of these programs is surprisingly low. Some drugs have 15 to 20% effectiveness. Others are as high as 20 to 30%. That was hard to hear since those seem like very low odds. However, Dr. Daud reminded me, each time you enter a new program, you increment your chances of effective treatment. So, two treatments, one 15% and one 25% equals a 40% chance of finding something that works. Of course this is not exact math, but you get the idea.
At the end of the interview we discussed time. “You don’t have a lot of time,” Dr. Daud cautioned. It has already been eight weeks since the tumor was discovered and the cancer has grown at several sites during that time. Eight weeks is approximately one treatment cycle. I can’t recover that time. So the urgency is to identify what I have and get me started on a drug treatment most likely to be effective.
Two things I liked about this guy. First, he has deep experience with melanoma clinical trials so he’s a cutting edge guy. Second, he had broken his leg while roller blading, so he likes to be out there sailing through the air.
Bottom line: it is still not certain what type of tumor I have. After Dr. O’Donnell’s open biopsy, the estimates lean toward melanoma. However, the biopsy results are still not back from the pathology lab. Given these unknowns, Dr. Daud moved forward and said, “Let’s suppose that what you have is a melanoma. We can talk about types of treatment.” So that’s what we did. He started by talking about the Immunological drugs, such as Interluekon 2 which is quite toxic and requires a stay in the Intensive Care Unit (ICU) during administration. Then, there are the chemotherapy drugs, some of which have been used for up to 30 years. Newer chemo drugs are also available, and they may be used in combination to maximize effectiveness. The caution is that two chemo drugs used together also multiplies the side-affects. Additionally, there are clinical trials that Dr. Daud participates in and I may qualify of one of those. These are experimental protocols testing new drugs or new combinations of known drugs. Point being, there are several treatment options.
It seems that there are genetic variants between melanomas that occur on the head and neck and melanomas that grow on the back (and possibly others as well that didn’t apply to our discussion). My melanomas were both on the upper back and these tumors are characterized by the presence of BRAF inhibitors. Check this out for yourself on Google.
So, what’s the plan? Dr. Daud’s strategy is to first verify that this is a melanoma. If yes, then we can start me, say, early next week on a chemo combination that has a good probability of being effective. Baring a violent allergic reaction (something that isn’t a part of my medical history) I would complete the six to eight week course of treatment. Scans would monitor whether the tumors are responding or not. If the tumors don’t substantially decrease in size, then we proceed to the next drug regimen. All of these courses of treatment have their own pitfalls with fatigue, nausea, and the lurid list of chemo side effects. If this is not a melanoma, then I move back to the sarcoma side of the house and consult with Dr. Jahan who was initially recommended ages ago (four weeks, actually).
The effectiveness of these programs is surprisingly low. Some drugs have 15 to 20% effectiveness. Others are as high as 20 to 30%. That was hard to hear since those seem like very low odds. However, Dr. Daud reminded me, each time you enter a new program, you increment your chances of effective treatment. So, two treatments, one 15% and one 25% equals a 40% chance of finding something that works. Of course this is not exact math, but you get the idea.
At the end of the interview we discussed time. “You don’t have a lot of time,” Dr. Daud cautioned. It has already been eight weeks since the tumor was discovered and the cancer has grown at several sites during that time. Eight weeks is approximately one treatment cycle. I can’t recover that time. So the urgency is to identify what I have and get me started on a drug treatment most likely to be effective.
Two things I liked about this guy. First, he has deep experience with melanoma clinical trials so he’s a cutting edge guy. Second, he had broken his leg while roller blading, so he likes to be out there sailing through the air.
October 17th, 2008: My first normal day this week. I simply got up and went to work. Imagine! But once at work, I took a deep breath and met with my boss, Michael Wong, about my health issues. What a wonderful, supportive guy. His sole consideration was how to lighten my work so that I wouldn’t have to stress about not being able to deliver my assignments. I felt valued and cherished. This is my third contract at PG&E and it has been very healing for me to be associated with this particular group and to have worked on the assignments that I’ve been offered. It’s been creative and fun beyond all my previous experience at the utility.
On the way home, my cell phone rang a lot. First, Eileen Lemus called, then a person who I didn’t know and couldn’t understand over the chaos of the mid-afternoon bus ride. I returned their calls once I arrived home. The unknown guy turned out to be a clinic scheduler for Dr. Daud, a melanoma oncologist. Since I’d been working with sarcoma oncologists, it was clear that something had shifted. I’d been referred to Dr. Daud by Dr. O’Donnell who performed my open biopsy. We agreed to a clinic appointment, and I’ll meet the Dr. at 9:30 on Monday morning. Then, I talked to Eileen who explained that Dr. O’Donnell had called her after the biopsy and given her a thorough review of his findings during surgery. As soon as he made a slight incision in my abdomen and encountered the tumor, he recognized a melanoma, not a sarcoma. I had been misdiagnosed by the pathology labs at CPMC and UCSF. He took tissue samples and closed me up. Then, he talked to Dr. Daud about getting me into his practice. During the rest of the conversation, Eileen told me what she knew about melanoma treatments, how they can rely heavily or exclusively on chemo. After gearing up for a surgery, it turns out that I may not have one. Rather, the preferred treatment will be a tailored chemotherapy designed to take out the lesions on the liver, lungs and hopefully the pelvic growths. This is a major change of plans. And we won’t consider the path not taken: a deep pelvic surgery with metastasizing nodes on the lungs and liver.
By late in the afternoon, I was explaining this remarkable change of diagnosis to Wendy Ostrow. She brought a gift of Grandma Bessie’s cabbage rolls in roasted tomato sauce perfected with a drop of balsamic and noodle kugel; Passover food to celebrate the delivery through the Red Sea of a misdiagnosis.
On the way home, my cell phone rang a lot. First, Eileen Lemus called, then a person who I didn’t know and couldn’t understand over the chaos of the mid-afternoon bus ride. I returned their calls once I arrived home. The unknown guy turned out to be a clinic scheduler for Dr. Daud, a melanoma oncologist. Since I’d been working with sarcoma oncologists, it was clear that something had shifted. I’d been referred to Dr. Daud by Dr. O’Donnell who performed my open biopsy. We agreed to a clinic appointment, and I’ll meet the Dr. at 9:30 on Monday morning. Then, I talked to Eileen who explained that Dr. O’Donnell had called her after the biopsy and given her a thorough review of his findings during surgery. As soon as he made a slight incision in my abdomen and encountered the tumor, he recognized a melanoma, not a sarcoma. I had been misdiagnosed by the pathology labs at CPMC and UCSF. He took tissue samples and closed me up. Then, he talked to Dr. Daud about getting me into his practice. During the rest of the conversation, Eileen told me what she knew about melanoma treatments, how they can rely heavily or exclusively on chemo. After gearing up for a surgery, it turns out that I may not have one. Rather, the preferred treatment will be a tailored chemotherapy designed to take out the lesions on the liver, lungs and hopefully the pelvic growths. This is a major change of plans. And we won’t consider the path not taken: a deep pelvic surgery with metastasizing nodes on the lungs and liver.
By late in the afternoon, I was explaining this remarkable change of diagnosis to Wendy Ostrow. She brought a gift of Grandma Bessie’s cabbage rolls in roasted tomato sauce perfected with a drop of balsamic and noodle kugel; Passover food to celebrate the delivery through the Red Sea of a misdiagnosis.
October 15th and 16th, 2008: I started my morning at 1600 Divisadero for the second day in a row. This time, I checked in to the hospital side of the building to get ready for my open biopsy. I hadn’t been in a hospital for five and a half weeks! But once back, I swung into the routine pretty quickly: fill out forms, get ID banded, answer questions about drug tolerances, etc. Then, the routine was fractured in a totally unexpected way. The admitting nurse started to insert my IV, and for the first time, it was so astonishingly painful that I screamed out loud. Tears sprang out of my eyes, and the other staff in the room rushed to the bed, one nurse urging me to be quiet, the other encouraging me to let it out. I let it out. After weeks of not reaching my resistance, I was suddenly weeping uncontrollably. I didn’t want to be in a hospital bed. I didn’t want to have a biopsy. I didn’t want to have cancer. I didn’t want any of my reality, and I didn’t know how to make it go away. I cried all the way down the hallway to the operating room and into the oblivion of anesthesia.
My friend Ruthann Duncan had sent me two books about the soul’s reaction to illness. It sometimes seems to me that at least half of my friends are therapists, and this has guaranteed many fine conversations about behavior and motivation as well as some great reading. I took Ruth Shinoda Bolen’s book: Close to the Bone to the hospital with me. As I started reading after the biopsy, I felt hungry for a perspective that focused on my deeper self. The doctors and hospital staff would help take care of my body, but it’s my communion with myself, my friends and my psychic study group that takes care of my soul. Bolen told the stories of Innana and Persephone to trace the journey into the underworld of the body’s knowledge where reason and logic are useless and feelings and intuition reign. When a life-threatening illness elbows itself into a person’s life, the shock is tremendous. The call to heal starts to ripple through the psyche. What isn’t working? What’s out of alignment? What has drained energy for too long? What has been ignored at the expense of health and well-being? All of these questions start to constellate around the illness. The answers to these questions become a core part of the healing. Or, there’s always the option to leave the questions unanswered. I read avidly until leaving the hospital in the early afternoon of the next day. Once at home, I pulled the covers over my head and slept to distance myself from 30 hours in the hospital.
My friend Ruthann Duncan had sent me two books about the soul’s reaction to illness. It sometimes seems to me that at least half of my friends are therapists, and this has guaranteed many fine conversations about behavior and motivation as well as some great reading. I took Ruth Shinoda Bolen’s book: Close to the Bone to the hospital with me. As I started reading after the biopsy, I felt hungry for a perspective that focused on my deeper self. The doctors and hospital staff would help take care of my body, but it’s my communion with myself, my friends and my psychic study group that takes care of my soul. Bolen told the stories of Innana and Persephone to trace the journey into the underworld of the body’s knowledge where reason and logic are useless and feelings and intuition reign. When a life-threatening illness elbows itself into a person’s life, the shock is tremendous. The call to heal starts to ripple through the psyche. What isn’t working? What’s out of alignment? What has drained energy for too long? What has been ignored at the expense of health and well-being? All of these questions start to constellate around the illness. The answers to these questions become a core part of the healing. Or, there’s always the option to leave the questions unanswered. I read avidly until leaving the hospital in the early afternoon of the next day. Once at home, I pulled the covers over my head and slept to distance myself from 30 hours in the hospital.
Tuesday, October 14, 2008
October 14th, 2008: Today my entire treatment plan was altered. When I woke up this morning, my strategy was to wrap up the team building visits with Drs. O’Donnell and Gottschalk today. Then, meet with Dr. Greene, my lead surgeon tomorrow and verify that I would be having surgery in the next month to remove the sarcoma in my pelvis. The first visit with Dr. O’Donnell changed all that. The shift in directions happened when we looked at the MRI scans taken yesterday. While pointing out that the sarcoma had a presence in the pelvic area as well as an extension to thigh muscle in the groin, Dr. O’Donnell was also worried about a 1.6 cm. spot on my liver and several smaller spots in the lungs.
Dr. O’Donnell: “I haven’t seen a sarcoma metastasize into these tissues before. This acts like a spindle cell melanoma, and you’ve had two melanomas removed in the past.”
Geo: “True. But those melanomas had really clean tissue parameters.”
Dr. O’Donnell: “My concern is that we’re planning to operate on a large sarcoma in your pelvis when the real activity may be happening in your lungs and liver. It may be more effective to use chemo to take out the spots in the lungs and liver, shrink the pelvic sarcoma and go from there. I think the first step is to make sure we have the right diagnosis. I’d like to do an open biopsy tomorrow and get some serious tissue to look at. Then, take the results to the tumor board on October 24th for an assessment.”
Geo: “Open biopsy?”
Dr. O’Donnell: “I make an incision and retrieve more tissue than the first time.”
Geo: “Tomorrow?”
Dr. O’Donnell: “Right. There isn’t a lot of time here. Your pelvic tumor is growing and causing you pain. But the other spots are also active and we can’t remove them surgically. There are too many. We need to find out what this is before we do invasive treatment.”
Geo: “OK. I don’t want to go through major surgery only to find out that the bigger problem is with metastasizes. Put me on your calendar.”
Dr. O’Donnell: “I’ll get Dr. Jahan involved because he knows about chemo and sarcomas. However, we may need to switch to a melanoma guy. After looking at the pictures from yesterday’s MRI, I’d say that everything is on the table.”
Geo: “Right. Everything is on the table.”
Special thanks to my friend Eileen Lemus who has been at my side during these long clinic visits. Her care and guardianship has been very, very comforting. She's heard the whole story and has excellent instincts for the most comprehensive care.
Tomorrow, Wednesday 15th, I go into UCSF Mt. Zion for the open biopsy. I’ll stay in the hospital for one or two nights. I have to say, it was hard to give up the plan for one surgery to treat my one tumor. It was hard to accept that I have quite probably many tumors. But, I also didn’t want to endure a major surgery that weakens me during a metastasis of the cancer. As with all sudden changes, near term plans evaporate. The hardest change was to call my friends Bob and Jeremy and tell them that I couldn’t attend their wedding at City Hall on Thursday. It’s been so joyful in the past months going to weddings of my friends. Each occasion is unique because the couple is unique. After calling Bob, I wept. I could short-term deal with the fact that I have a much more complicated cancer, but not being with Bob and Jeremy during a peak of their happiness felt like a horrible, unexpected loss. Such are the curious byways of my feelings. Also, I’m embarking on a crucial few weeks at work where I had my days mapped out for what I planned to accomplish. Now, the rest of the week is gone. I called my project manager Belinda and explained the sudden biopsy. She was totally empathetic and caring. Her only question was, “What can I cook for you?”
I’ll be in the hospital for a couple of days. When I return home, I’ll get back to the blog. Please, please don’t call me in the hospital. Just send me your good wishes telepathically. You can do it. It works. I’ll get the vibe. So, thanks in advance.
Dr. O’Donnell: “I haven’t seen a sarcoma metastasize into these tissues before. This acts like a spindle cell melanoma, and you’ve had two melanomas removed in the past.”
Geo: “True. But those melanomas had really clean tissue parameters.”
Dr. O’Donnell: “My concern is that we’re planning to operate on a large sarcoma in your pelvis when the real activity may be happening in your lungs and liver. It may be more effective to use chemo to take out the spots in the lungs and liver, shrink the pelvic sarcoma and go from there. I think the first step is to make sure we have the right diagnosis. I’d like to do an open biopsy tomorrow and get some serious tissue to look at. Then, take the results to the tumor board on October 24th for an assessment.”
Geo: “Open biopsy?”
Dr. O’Donnell: “I make an incision and retrieve more tissue than the first time.”
Geo: “Tomorrow?”
Dr. O’Donnell: “Right. There isn’t a lot of time here. Your pelvic tumor is growing and causing you pain. But the other spots are also active and we can’t remove them surgically. There are too many. We need to find out what this is before we do invasive treatment.”
Geo: “OK. I don’t want to go through major surgery only to find out that the bigger problem is with metastasizes. Put me on your calendar.”
Dr. O’Donnell: “I’ll get Dr. Jahan involved because he knows about chemo and sarcomas. However, we may need to switch to a melanoma guy. After looking at the pictures from yesterday’s MRI, I’d say that everything is on the table.”
Geo: “Right. Everything is on the table.”
Special thanks to my friend Eileen Lemus who has been at my side during these long clinic visits. Her care and guardianship has been very, very comforting. She's heard the whole story and has excellent instincts for the most comprehensive care.
Tomorrow, Wednesday 15th, I go into UCSF Mt. Zion for the open biopsy. I’ll stay in the hospital for one or two nights. I have to say, it was hard to give up the plan for one surgery to treat my one tumor. It was hard to accept that I have quite probably many tumors. But, I also didn’t want to endure a major surgery that weakens me during a metastasis of the cancer. As with all sudden changes, near term plans evaporate. The hardest change was to call my friends Bob and Jeremy and tell them that I couldn’t attend their wedding at City Hall on Thursday. It’s been so joyful in the past months going to weddings of my friends. Each occasion is unique because the couple is unique. After calling Bob, I wept. I could short-term deal with the fact that I have a much more complicated cancer, but not being with Bob and Jeremy during a peak of their happiness felt like a horrible, unexpected loss. Such are the curious byways of my feelings. Also, I’m embarking on a crucial few weeks at work where I had my days mapped out for what I planned to accomplish. Now, the rest of the week is gone. I called my project manager Belinda and explained the sudden biopsy. She was totally empathetic and caring. Her only question was, “What can I cook for you?”
I’ll be in the hospital for a couple of days. When I return home, I’ll get back to the blog. Please, please don’t call me in the hospital. Just send me your good wishes telepathically. You can do it. It works. I’ll get the vibe. So, thanks in advance.
Monday, October 13, 2008
October 13th, 2008: Today I returned to UCSF Mission Bay radiology for another MRI. It took a long, long time: almost two hours. Apparently, there was a doctor—perhaps Dr. O’Donnell the bone oncologist—watching the scans at a remote site. They took me out of the machine on several occasions, adjusted my position and rolled me back in. At the time, these tests don’t seem rigorous, but a few hours later, I am leveled. So it was today; I came home and slept for two hours.
Yesterday evening, I sent out the link to this blog to some sixty people, with others to follow. As with all drafts, the thought crossed my mind, OK, what did I miss in the first edition? There have been so many wonderful visits that weren’t noted here and tender times on the phone with people I love. The bedrock of my life in the last six weeks has been solid with affection and care. That said, there have been two events that have clamored for a bit of text since they meant a lot to me.
First, my godson Willem and his parents, Darius and Kris, moved from San Francisco to Portland, Oregon at the end of September. I have to say, I will miss their presence in the City. Once a month, we would have a Willem night when his godmother, Christine Rickerby and I would visit for dinner. Watching him grow and become himself during this first year has been a deep joy for me. What a wonderful child! A couple of weeks before the move, Willem and his mom came over for a visit. Those of you have seen my apartment know that it is not easily baby-proofed. Mostly Kris and I followed Willem around as he discovered computer cords, large pieces of glass, my collection of stuffed animals and other wonders that were new to him. Getting to know Willem has brought forth a yearning to nurture a new baby that I hadn’t experienced for many years. As with so many things, I am focused on getting well so that I can deepen our connection.
Second, in early October I decided that I could not return from my two month leave of absence from the HIV Planning Council, the city commission that I serve on. I’d had been on the council for almost two years and it was a group where I found a lot of receptivity for my skills at documenting procedure and doing committee work as well as a challenging amount of learning on my part about Federal HIV funding and how dollars are spent for HIV services. After working on the ground at Maitri Compassionate Care for 20 years, the Planning Council was a larger, tri-county and national picture for me about how people with HIV and AIDS are receiving care. The biggest loss for me was giving up the company of many talented people who serve on the council. I felt a big synergy between our talents and how we created solutions together. But, I also knew that I couldn’t attend three meetings a month with a surgery and another convalescence heading my way. So, goodbye for now.
On a related note, I’ve also had to look at my commitment to Maitri: can I continue to serve on the Board? Hopefully, yes. In 2008, I did a lot of work with other board members to analyze merging with two other organizations. Now that that work is over, I hope to cruise for the next few months without having to leave my home organization. That’s my hope.
Yesterday evening, I sent out the link to this blog to some sixty people, with others to follow. As with all drafts, the thought crossed my mind, OK, what did I miss in the first edition? There have been so many wonderful visits that weren’t noted here and tender times on the phone with people I love. The bedrock of my life in the last six weeks has been solid with affection and care. That said, there have been two events that have clamored for a bit of text since they meant a lot to me.
First, my godson Willem and his parents, Darius and Kris, moved from San Francisco to Portland, Oregon at the end of September. I have to say, I will miss their presence in the City. Once a month, we would have a Willem night when his godmother, Christine Rickerby and I would visit for dinner. Watching him grow and become himself during this first year has been a deep joy for me. What a wonderful child! A couple of weeks before the move, Willem and his mom came over for a visit. Those of you have seen my apartment know that it is not easily baby-proofed. Mostly Kris and I followed Willem around as he discovered computer cords, large pieces of glass, my collection of stuffed animals and other wonders that were new to him. Getting to know Willem has brought forth a yearning to nurture a new baby that I hadn’t experienced for many years. As with so many things, I am focused on getting well so that I can deepen our connection.
Second, in early October I decided that I could not return from my two month leave of absence from the HIV Planning Council, the city commission that I serve on. I’d had been on the council for almost two years and it was a group where I found a lot of receptivity for my skills at documenting procedure and doing committee work as well as a challenging amount of learning on my part about Federal HIV funding and how dollars are spent for HIV services. After working on the ground at Maitri Compassionate Care for 20 years, the Planning Council was a larger, tri-county and national picture for me about how people with HIV and AIDS are receiving care. The biggest loss for me was giving up the company of many talented people who serve on the council. I felt a big synergy between our talents and how we created solutions together. But, I also knew that I couldn’t attend three meetings a month with a surgery and another convalescence heading my way. So, goodbye for now.
On a related note, I’ve also had to look at my commitment to Maitri: can I continue to serve on the Board? Hopefully, yes. In 2008, I did a lot of work with other board members to analyze merging with two other organizations. Now that that work is over, I hope to cruise for the next few months without having to leave my home organization. That’s my hope.
Saturday, October 11, 2008
October 10th, 2008: By the end of the week, final appointments were lined up with my surgical team. On Monday, October 13th, another MRI at UCSF Mission Bay. On Tuesday, October 14th, an appointment with Dr. O’Donnell in the morning and Dr. Gottschalk at noon. Finally, on Wednesday, October 15th, a return visit to Dr. Greene to summarize the findings of all the doctors. My hope is that we can set the surgery date so that I can plan for my next time hospital time and the aftermath. In retrospect, hip replacement was a warm up for me. I’ve learned a bit about how hospitals operate. I’ve recently learned to walk again, now I’ll re-learn after the tumor surgery. But most important, the convalescent time at home may be more rigorous and I may need more help. This time, I’ll have two incisions through the abdominal wall, not just one incision with no muscles or nerves cut. In the time before surgery, I’ll take Monica’s roles of Warriors and Angels and organize a support group to help me get through the cancer.
October 1st to October 5th, 2008: When my medical researchers David and Eileen found Dr. Jahan and I was readily accepted into his practice, I assumed I’d meet the guy immediately. But after looking at my PET and CT scans his appointments scheduler explained that Dr. Jahan wanted me to start with the team of surgeons who would remove my tumor. Once the sarcoma had been excised, then we would meet to talk about future treatment. As emails and phone calls increased with various medical offices, I started to become agitated. It wanted a plan to take the tumor from my body. Underlying this escalating urgency was a truth that eluded me: I was in pain.
A couple of weeks earlier in Dr. Hufford’s office, he had told me bluntly, “You are in pain.” I was surprised by his assessment, although within hours after applying his prescribed Fentanyl patch, I felt relief. How could I not know that I was in pain? Some of the answer is that I think of pain as sharp, sudden, jarring, violent, and overwhelming. One of the reasons that I limped on my right leg for over a year and a half was that I was in what I called discomfort which was aching, constant, and steady. By my definition, I had experienced very little pain in my life, although I had certainly lived through episodes of discomfort. It became clear to me that I needed to listen to my body with more discernment and attention.
A couple of weeks earlier in Dr. Hufford’s office, he had told me bluntly, “You are in pain.” I was surprised by his assessment, although within hours after applying his prescribed Fentanyl patch, I felt relief. How could I not know that I was in pain? Some of the answer is that I think of pain as sharp, sudden, jarring, violent, and overwhelming. One of the reasons that I limped on my right leg for over a year and a half was that I was in what I called discomfort which was aching, constant, and steady. By my definition, I had experienced very little pain in my life, although I had certainly lived through episodes of discomfort. It became clear to me that I needed to listen to my body with more discernment and attention.
September 30th, 2008: Ann Peden, my land partner in Glen Ellen, has a life friend named Monica Parker. Monica has a legendary voice, especially as a blues and soul singer. Shortly after I talked with Ann about my cancer diagnosis, she called Monica to ask about the doctor who had masterminded her recovery from a sarcoma several years ago. Monica spoke the magic name: Dr. Thierry Jahan. Within a few days, Monica and I had a long conversation where she shared some of her survival tips and memories. The first advice out of her mouth: change your diet. I didn’t know anything about alkaline or acid foods, so Monica gave me a crash course. Celery, cucumbers, lentils, onions, spinach, fresh sprouting greens metabolize as alkaline and help your body build a strong immune system. Sugars, red meat, white bread and coffee metabolize as acidic in the body. Monica told me about the sequence of chemo, surgery, radiation and a final chemo course that charted her recovery. She’d had a daunting, difficult journey, and the memory of it caused her to cry at times during the narration. “But,” she passed on to me, “You can live through this.” She shared the rituals she created to bring responsibility to the strong chemotherapy drugs that she ingested. She gave me names of books that had inspired her. She talked about setting up her support group. She had Warriors who did the heavy lifting of practical support, research and advocacy work. She also had Angels who held her soul during some very dark times. “I just gave ‘em assignments,” Monica remembered. “And they were there for me.”
Prior to my hip replacement, I’d talked to people who been given new hips and knees by my surgeon and it gave me confidence and reassurance that I’d be OK as well. But since my cancer diagnosis, I hadn’t talked to any long term survivors until the phone call with Monica. I ordered the books. I went to Whole Foods and bought more vegetables than usual. But mostly, I replayed in my mind Monica’s warm, plumy words, “You can live through this.” As we were getting ready to end the call, Monica paused for a moment. “I wouldn’t have said this before. But it was a blessing.”
Prior to my hip replacement, I’d talked to people who been given new hips and knees by my surgeon and it gave me confidence and reassurance that I’d be OK as well. But since my cancer diagnosis, I hadn’t talked to any long term survivors until the phone call with Monica. I ordered the books. I went to Whole Foods and bought more vegetables than usual. But mostly, I replayed in my mind Monica’s warm, plumy words, “You can live through this.” As we were getting ready to end the call, Monica paused for a moment. “I wouldn’t have said this before. But it was a blessing.”
September 29th, 2008: Early on Monday morning, I jumped in a cab and watched the sun rise over the East Bay hills while driving to the UCSF Mission Bay campus. There, I was given an injection of syrupy radioactive dye. Lying on a platform with my arms cinched to my sides and head secured with towels, I was rolled into a very large machine and the PET and CT scans commenced. Fortunately, claustrophobia is not one of my talents. Although I was surrounded by tons of metal, I fell asleep. Pictures were taken of my entire body searching for out-of-pattern masses, then another round of pictures identified if these unusual masses were “active” meaning, growing. When the blood carries the sugared, radioactive dye throughout the body, tumors greedily ingest more of the syrupy goo than other organs, and so their hunger reveals them to the camera.
September 28th, 2008: Today, I gave a presentation to the new group of volunteers at Maitri Compassionate Care. Twice a year, Stan Stone, the Volunteer Coordinator at Maitri trains new volunteers. It’s always an honor for me to attend these trainings and give a talk for some 45 minutes about the wide-ranging social forces that helped to create Maitri.
I start with the development of penicillin in the early 1930’s. For the first time in history, sex and death were unlinked. Because penicillin could cure first and second stage syphilis, it was possible to have sex without fear of contacting a life-threatening illness. Then, I move to the late 1950’s and talk about the unresolved guilt among Americans about dropping nuclear bombs twice on Japanese cities as well as interring Japanese Americans in camps, the post-War occupation of Japan and the ongoing grief over troops who died in the Pacific Theatre. Within this post-war ambivalence the arrival of Susuki Roshi to San Francisco to offer spiritual guidance at the invitation of the Japanese American community went unnoticed at the time. The Beats and other West Coast literati picked up on Susuki Roshi’s dharma talks and his teachings about Soto Zen ideas such as satori, sitting with the dying and other monastic Buddhist traditions began to filter into the American mainstream. Then, a shift to the Afro American Civil Rights movement in the mid-50’s. I explain how this struggle set the pattern for subsequent civil rights movements later in the century: write the unwritten history of the afflicted people; identify the goals of what liberation means; define the social changes needed to correct the injustices of many centuries. Then, I launch into the Hippie movement and its counterculture values; barter, communal living, sexual freedom, use of music, drugs and meditation to alter and raise consciousness. Followed by other 60’s social movements including the sexual revolution supported by the birth control pill. In the early 70’s, the rise of Feminism and gay liberation. Then, I move to the mid-70’s in England, and address the emergence of the hospice movement which transformed end-of-life care into a mix of pain relief using the Brompton cocktail (oral morphine) and access to open air gardens and a deep respect for patients prior to their death. In America, Elizabeth Kubler-Ross adds her pioneering advocacy work with death and dying, including her postulate that the journey after a terminal diagnosis may traverse denial, depression, anger, bargaining and acceptance. And then, the arrival of AIDS in the early 1980’s when, for the first time in decades, sex and death are reunited and the fear that having sex may kill you returns to the culture.
Finally, the unifying element that ties all of these wide-ranging movements and social cross-currents together in the life of one person: Issan Dorsey, the man who founded Maitri. Issan: a suburban kid from Santa Barbara who became a dancer, a gay man, a drag queen, a hippie, a drug user, a zazen sitter, a Zen Buddhist monk, a Zen Buddhist priest, the first abbot of the Hartford Street Zen Center specifically opened for gay Buddhists and a man infected with and actively dying of AIDS. The rich cultural baggage carried by Issan Dorsey is alive and functional every day at Maitri.
It’s a wonderful lecture to give, because the volunteers are focused on bedside care, best anti-infection practices and all manner of close up, real life health care issues and ways of supporting the terminally ill. This talk gives them a wider context of how Maitri came to be and why it is such a valuable and unique place. Not just a building that was funded by some larger health care budget, but literally the creative result of many yearnings from many centuries and many people that the end of life be humane, and dignified and honorable.
I start with the development of penicillin in the early 1930’s. For the first time in history, sex and death were unlinked. Because penicillin could cure first and second stage syphilis, it was possible to have sex without fear of contacting a life-threatening illness. Then, I move to the late 1950’s and talk about the unresolved guilt among Americans about dropping nuclear bombs twice on Japanese cities as well as interring Japanese Americans in camps, the post-War occupation of Japan and the ongoing grief over troops who died in the Pacific Theatre. Within this post-war ambivalence the arrival of Susuki Roshi to San Francisco to offer spiritual guidance at the invitation of the Japanese American community went unnoticed at the time. The Beats and other West Coast literati picked up on Susuki Roshi’s dharma talks and his teachings about Soto Zen ideas such as satori, sitting with the dying and other monastic Buddhist traditions began to filter into the American mainstream. Then, a shift to the Afro American Civil Rights movement in the mid-50’s. I explain how this struggle set the pattern for subsequent civil rights movements later in the century: write the unwritten history of the afflicted people; identify the goals of what liberation means; define the social changes needed to correct the injustices of many centuries. Then, I launch into the Hippie movement and its counterculture values; barter, communal living, sexual freedom, use of music, drugs and meditation to alter and raise consciousness. Followed by other 60’s social movements including the sexual revolution supported by the birth control pill. In the early 70’s, the rise of Feminism and gay liberation. Then, I move to the mid-70’s in England, and address the emergence of the hospice movement which transformed end-of-life care into a mix of pain relief using the Brompton cocktail (oral morphine) and access to open air gardens and a deep respect for patients prior to their death. In America, Elizabeth Kubler-Ross adds her pioneering advocacy work with death and dying, including her postulate that the journey after a terminal diagnosis may traverse denial, depression, anger, bargaining and acceptance. And then, the arrival of AIDS in the early 1980’s when, for the first time in decades, sex and death are reunited and the fear that having sex may kill you returns to the culture.
Finally, the unifying element that ties all of these wide-ranging movements and social cross-currents together in the life of one person: Issan Dorsey, the man who founded Maitri. Issan: a suburban kid from Santa Barbara who became a dancer, a gay man, a drag queen, a hippie, a drug user, a zazen sitter, a Zen Buddhist monk, a Zen Buddhist priest, the first abbot of the Hartford Street Zen Center specifically opened for gay Buddhists and a man infected with and actively dying of AIDS. The rich cultural baggage carried by Issan Dorsey is alive and functional every day at Maitri.
It’s a wonderful lecture to give, because the volunteers are focused on bedside care, best anti-infection practices and all manner of close up, real life health care issues and ways of supporting the terminally ill. This talk gives them a wider context of how Maitri came to be and why it is such a valuable and unique place. Not just a building that was funded by some larger health care budget, but literally the creative result of many yearnings from many centuries and many people that the end of life be humane, and dignified and honorable.
September 26th, 2008: Four weeks after my hip replacement, I returned to Dr. Cox’s office for my first check-up. It was a poignant visit. The surgery had been a great success, but all admiration we shared for the rapid recover was overcast by the unknowns of my cancer diagnosis and the upcoming procedures necessary to treat the unexpected illness. For the record, let me say that Dr. Cox is famous for his neat, even elegant finishes to closing the wound. His wife is a plastic surgeon and she showed him how to do subcutaneous suturing near the outside of the incision, then, for the final closing of the site, Dr. Cox glues the skin together so that the final result is a slim line, like the light tracing of a thin red pencil. And this line fades with time. Amazing.
September 23rd, 2008: Within twenty hours of asking my medical sleuths to find the best sarcoma doctor, they turned in their results. Eileen was the fastest. David Ostrow went straight to the top and text messaged Don Abrams who runs the UCSF Oncology Dept. Both detectives delivered the same name: Dr. Thierry Jahan. Within minutes, I called his practice and did the work over the phone that would sign me up as one of his patients. In less than a day, my friends had located the doctor most able to manage the long term care for someone with my list of complications. What a blessing to have this difficult task accomplished so quickly!
Later in the evening, I attended the monthly board meeting of Maitri Compassionate Care. I’ve worked at Maitri as a bedside caregiver since the first days when it offered housing to one guy with HIV. After some seven years of giving emotional support to Maitri residents, I joined the board. Leaving my apartment this evening to participate in the board meeting was an important step back into the world, and evidence of how I was healing. Although I hadn’t planned on it, I took a few minutes before the meeting started to catch up all my friends on the board not only about my hip recovery but also about the cancer diagnosis. It did not feel odd to tell the governing body of an end-of-life care facility that I had a life threatening illness. The support and care from the board members and Tim, our executive director, was really gratifying. Coming out never stops, and the communal warmth of being accepted is also ongoing.
Later in the evening, I attended the monthly board meeting of Maitri Compassionate Care. I’ve worked at Maitri as a bedside caregiver since the first days when it offered housing to one guy with HIV. After some seven years of giving emotional support to Maitri residents, I joined the board. Leaving my apartment this evening to participate in the board meeting was an important step back into the world, and evidence of how I was healing. Although I hadn’t planned on it, I took a few minutes before the meeting started to catch up all my friends on the board not only about my hip recovery but also about the cancer diagnosis. It did not feel odd to tell the governing body of an end-of-life care facility that I had a life threatening illness. The support and care from the board members and Tim, our executive director, was really gratifying. Coming out never stops, and the communal warmth of being accepted is also ongoing.
September 22nd, 2008: My physical therapist came for a visit on Monday morning and he was appalled at how much my walking had regressed over the weekend. I explained that I thought it must be the tumor’s grown that was altering my body. Then, I called a cab and picked up Eileen Lemus on the way to my first visit ever to an oncologist. Dr. Hufford had been referred to my case when the tumor was initially spotted on the day of surgery. He had seen him the biopsy report, and I had no idea what he would recommend. But first, when I stepped into his office I noticed all the orchids growing on bookshelves, tables and plant stands. For several minutes, we took time out and talked about growing orchids and what wonderful, strange plants they were. Them, we got down to business. The first thing he told me was that I was in pain. This surprised me. I didn’t define my discomfort as pain. “Well,” he said, “when I watch you move, I see a body that is trying to avoid pain and is currently in pain.” We talked about the meds I was taking, and he said, “We can do better than that.” He wrote a prescription for Fentanyl patches: apply one to the skin every three days for basal pain management.
Next, he explained that my cancer, a sarcoma, was rare. In his practice, he treated people with breast, colon, lung and brain cancers. “What you need to do is find the best specialist to treat you.” As I tried to imagine tracking down a cancer guru, Eileen said, with total assurance, “I’ll get started on that.” Also, he emphasized that where ever I started treatment, it would be best to stay with that facility. In the larger Bay Area, my best choices were UCSF and Stanford, both big teaching hospitals with many authorities who studied esoteric illnesses. Finally, Dr. Hufford said that new scans were needed quickly to assess how the cancer had grown. Scan results would determine treatment. It was decided that I’d get the images taken at UCSF at Mission Bay. With a prescription for better pain medication, the assignment of finding a sarcoma specialist and a promised appointment for PET and CT scans, Eileen and I left the doctor’s office.
Shortly after I arrived home, my dear friend Wendy Ostrow came by for a visit. We hadn’t seen each other for several months, and the immediacy of relating the story of how the cancer was discovered up to the trip to the oncologist’s office a couple of hours earlier took precedence over family stories and general life news. Wendy’s medical background immediately kicked in. She went to my computer and started trolling through the UCSF web site for oncologists with a sarcoma specialty. Also, Wendy promised to email her brother David, who lives in Chicago but knows many of the UCSF faculty members after working in the AIDS epidemic for the past three decades.
Next, he explained that my cancer, a sarcoma, was rare. In his practice, he treated people with breast, colon, lung and brain cancers. “What you need to do is find the best specialist to treat you.” As I tried to imagine tracking down a cancer guru, Eileen said, with total assurance, “I’ll get started on that.” Also, he emphasized that where ever I started treatment, it would be best to stay with that facility. In the larger Bay Area, my best choices were UCSF and Stanford, both big teaching hospitals with many authorities who studied esoteric illnesses. Finally, Dr. Hufford said that new scans were needed quickly to assess how the cancer had grown. Scan results would determine treatment. It was decided that I’d get the images taken at UCSF at Mission Bay. With a prescription for better pain medication, the assignment of finding a sarcoma specialist and a promised appointment for PET and CT scans, Eileen and I left the doctor’s office.
Shortly after I arrived home, my dear friend Wendy Ostrow came by for a visit. We hadn’t seen each other for several months, and the immediacy of relating the story of how the cancer was discovered up to the trip to the oncologist’s office a couple of hours earlier took precedence over family stories and general life news. Wendy’s medical background immediately kicked in. She went to my computer and started trolling through the UCSF web site for oncologists with a sarcoma specialty. Also, Wendy promised to email her brother David, who lives in Chicago but knows many of the UCSF faculty members after working in the AIDS epidemic for the past three decades.
Monday, October 6, 2008
September 17th through Sept 22nd, 2008: Sometime back in the mid-70’s I remember some gay theoretician observing that, “Coming out never stops.” That’s been a useful setting for my behavioral compass, and it’s reassured me over the years. I understand it to mean: summon up the courage to be yourself. All of a sudden, I found myself learning to come out as a person with a cancer diagnosis. This started right way when my college friend Ellen came by for a visit the next morning. As she came into my apartment, I was on the phone with my primary care physician throwing around terms like, “sarcoma…biopsy…appointment…oncologist.” With such a greeting at the door, it seemed pointless to waste time talking about what a fine post-surgical recovery I was having. Still, it was hard to tell one of my best friends of many years that I had just been diagnosed with cancer. And then, it was easy. I have been blessed to have many friends who are skilled therapists, and Ellen definitely resides in that category. I recited the chronology from my surgeon coming into my room the day after surgery. We talked, we talked some more, and then Ellen stood up and said, “Enough talking.” She put her arms out toward me. “I’m big and I’m soft.” The night before when I had burst into tears, I went straight into the fear of loosing my life’s path. The next morning with Ellen, my tears were about being comforted by a person who loved me and cherished me. And so a pattern emerged about telling people directly. For the next several days, I called friends to tell them about the diagnosis. Visitors who expected to hear about how well I was recovering heard a different story.
Although I had been recovering quite rapidly I started to feel a distinct pain in my pelvis over the weekend. I had been walking around the park in front of my house, and all of a sudden, walking was very uncomfortable. Then, while walking from one room to another in my apartment, I realized that I could actually feel the tumor in my body. My difficulty with moving forward was due to the pelvic mass that I had to navigate around as if a tennis ball had been implanted at the bottom of my torso a bit on the right side.
Although I had been recovering quite rapidly I started to feel a distinct pain in my pelvis over the weekend. I had been walking around the park in front of my house, and all of a sudden, walking was very uncomfortable. Then, while walking from one room to another in my apartment, I realized that I could actually feel the tumor in my body. My difficulty with moving forward was due to the pelvic mass that I had to navigate around as if a tennis ball had been implanted at the bottom of my torso a bit on the right side.
September 16th, 2008: Since I hadn’t heard from the oncologist who had been assigned to my biopsy, I called his office to find out the lab results. At five that afternoon, my friend Maureen Kroll (who also happens to be a therapist) arrived for our first visit since I left the hospital. We were settling in to our conversation when the phone rang. Dr. Hufford, the oncologist, briefly told me that the biopsy indicated that I had a sarcoma type malignancy. So, the mass wasn’t a benign tumor or a cyst. I had cancer. Or, as I said to myself as I held the phone to my ear: “I have cancer.” Dr. Hufford promised to get me in for a consultation as quickly as possible. Then I put the phone down and went into the living room to tell Maureen the unexpected news.
When a crisis occurs, I quickly become very, very calm and organized. This can be useful. My ability to cruise through a war zone with an agenda and an identity was a prime coping mechanism when I was growing up in my episodically violent family. It served me well as an HIV caregiver during the first 14 years of the epidemic. I told Maureen that I had cancer, gave it its proper name and told her that I was stunned. Lucky me to have a therapist in the facing chair as well as a close friend. Maureen was splendid; she helped me to contain the shock during the rest of her visit. I had dinner, called Lorenzo in Seattle and gave him the news and decided that I’d had more than enough for one day. But once in bed, I couldn’t sleep.
Although I have worked as a volunteer doing end-of-life care for many, many years, I had never faced my own mortality. I couldn’t do it conceptually. As part of my hospice training, I’d done guided meditations that led me into a hypothetical cancer diagnosis, through various treatments of diminishing success until it was time to saying goodbye to my friends through the final day of my life. The meditation included feeling my spirit rise up out of my body just before my physical death. This was not a problem for me to imagine. In the mid-70’s I had experienced a life-altering out-of-body experience. Briefly, I had felt myself exit my body slowly, I had seen myself lying on the floor while looking down from the ceiling, and after about 20 minutes in some other dimension, I had slowly returned into my physical self. This experience convinced me that the after death state included sensate faculties of hearing, seeing, smelling as well as cognition and the full range of feeling. My interest in death and dying were supported by the advent of Elizabeth Kubler-Ross’s writings, and when I moved to San Francisco in July 1980, one of my commitments was to start doing hospice work. 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.
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. 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.
When a crisis occurs, I quickly become very, very calm and organized. This can be useful. My ability to cruise through a war zone with an agenda and an identity was a prime coping mechanism when I was growing up in my episodically violent family. It served me well as an HIV caregiver during the first 14 years of the epidemic. I told Maureen that I had cancer, gave it its proper name and told her that I was stunned. Lucky me to have a therapist in the facing chair as well as a close friend. Maureen was splendid; she helped me to contain the shock during the rest of her visit. I had dinner, called Lorenzo in Seattle and gave him the news and decided that I’d had more than enough for one day. But once in bed, I couldn’t sleep.
Although I have worked as a volunteer doing end-of-life care for many, many years, I had never faced my own mortality. I couldn’t do it conceptually. As part of my hospice training, I’d done guided meditations that led me into a hypothetical cancer diagnosis, through various treatments of diminishing success until it was time to saying goodbye to my friends through the final day of my life. The meditation included feeling my spirit rise up out of my body just before my physical death. This was not a problem for me to imagine. In the mid-70’s I had experienced a life-altering out-of-body experience. Briefly, I had felt myself exit my body slowly, I had seen myself lying on the floor while looking down from the ceiling, and after about 20 minutes in some other dimension, I had slowly returned into my physical self. This experience convinced me that the after death state included sensate faculties of hearing, seeing, smelling as well as cognition and the full range of feeling. My interest in death and dying were supported by the advent of Elizabeth Kubler-Ross’s writings, and when I moved to San Francisco in July 1980, one of my commitments was to start doing hospice work. 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.
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. 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.
September 6th through Sept. 15th, 2008: For the next ten days, I was a full time hip replacement patient in successful recovery. I had a calendar and scheduled visits with my friends. Originally, I thought I’d be in bed a lot and that visitors would pull a chair close to my bed and then I’d get tired after 45 minutes or so. None of that transpired. Every morning I woke up and dressed, went downstairs on crutches to get the paper, had breakfast and started my day. I took my first shower under the helpful eye of my friend, John Brown. I enjoyed cooking. My friend Georgia took me out for my first field trip: a shopping expedition to Whole Foods. Also, my Physical Therapist Jason Orstron arrived during the first week to supervise my first walks outside, around the block and through Alamo Square Park across the street. I felt vigorous and rested. I was particularly proud of diminishing my pain meds with the intention of stopping them within the week. During this time, I felt increasingly distant from the mass on the X-ray, since I hadn’t heard back about the biopsy report. Aiding my denial was the supposition that if they found anything serious, they’d let me know right away. I imagined that I had a cyst or a benign tumor that could be easily removed. That was my wish.
September 5th, 2008: I’d stayed in the hospital and rehab for nine days, and it was time to go home. I met with a terrific discharge planner, Bobbi Becker and she agreed that having Gaetano drive me home where I would be met by Eileen Lemus would work well. This can be a small town in various professions: Eileen had trained me in bedside care prior to the AIDS epidemic and Eileen and Bobbi had known each other for many years. I had done some shopping in the hospital and came home with crutches, a walker and a commode. Although it was an unusually hot day—mid-90’s—it felt wonderful to be home. After a visit with Eileen and Gaetano, I hobbled off to bed and slept for many hours.
September 3rd, 2008: After the long weekend, the hospital system moved forward. Dr. Andrew Giang scheduled me for a biopsy on the mass in my pelvis as well as assigning an oncologist to my case. On the 3rd, I left the California campus and took a 14 block ambulance trip to the CPMC Pacific campus ($720 one way). The biopsy was easy: lie on a gurney, receive anaesthetic via IV line, sleep and wake up an hour later. On arriving in the recovery room, I was treated to a pre-warmed blanket that was oh, so relaxing. What a great way to treat a patient. Then I was taken back to the California campus and my familiar room on the rehab ward. I was told that I'd get the results of the biopsy in five to ten days and in the meantime, I could consider myself a hip replacement patient. So that's what I did. I worked at learning to climb stairs and with each day, I felt more confident about walking down the hospital corridors with a nurse or aide in tow.
Labor Day Weekend: During the long weekend, the big event was that I left my hospital room and moved to Marshall Hale, the rehabilitation building next door. From the first day after surgery, I had been taking hesitant steps. Physical therapists and occupational therapists worked with me a couple of times a day to get me out of bed and teach me techniques for dressing myself, showering, etc. following surgery. My first efforts were tentative and gingerly, but surprisingly not punctuated by pain. One of the biggest surprises for me with my hip replacement was that I did not feel pain. Second surprise: the hospital food was surprisingly good. Who knew?!
August 29th, 2008: Early in the morning following my hip replacement surgery, my Dr. came in to tell me that the hip replacement had gone very well indeed. And, he added, after I had been sutured and glued back together, he did the standard practice of X-raying of my entire pelvis. When looking at the X-ray, he noticed a large mass on top of my perineum next to my pelvic bone with a lesion onto the bone.
Geo: "A mass?"
Dr: "Well, I'm a bone Doctor, not an oncologist, but I want to make sure that it isn't a secondary site."
Geo: "You mean a secondary cancer site?"
Dr: "Right. So I've scheduled you for a complete MRI today to find out if there's a primary site and other secondary sites. Then we’ll do a biopsy."
Geo: "I can't believe this. I don't feel a thing where you're talking about."
Dr: "I also looked at the original X-ray I took of your pelvis in mid-May when you first came into my office."
Geo: "And, what did you see?" "
Dr: Just the faintest hint of a lesion on the bone. I could barely see it."
Geo: "So it's grown that much in just three months?"
Dr: "Yes."
Geo: "Whew. I'm stunned. Yes, let's do the MRI and find out what this is."
Dr: "Right. But this is Labor Day weekend so we can’t do a biopsy until next week."
Geo, going into shock: "OK. Uh, thanks for the new hip. Whew, whew!”
End of the doctor's visit. Later in the day, I was taken downstairs to Radiology and an MRI was performed on my head, neck, chest, abdomen and pelvis. Good news! No primary sites or other secondary sites. However the mass that was revealed was surprisingly large: about 6.5 x 7.5 centimeters. That's a lot of growth for just three months.
Geo: "A mass?"
Dr: "Well, I'm a bone Doctor, not an oncologist, but I want to make sure that it isn't a secondary site."
Geo: "You mean a secondary cancer site?"
Dr: "Right. So I've scheduled you for a complete MRI today to find out if there's a primary site and other secondary sites. Then we’ll do a biopsy."
Geo: "I can't believe this. I don't feel a thing where you're talking about."
Dr: "I also looked at the original X-ray I took of your pelvis in mid-May when you first came into my office."
Geo: "And, what did you see?" "
Dr: Just the faintest hint of a lesion on the bone. I could barely see it."
Geo: "So it's grown that much in just three months?"
Dr: "Yes."
Geo: "Whew. I'm stunned. Yes, let's do the MRI and find out what this is."
Dr: "Right. But this is Labor Day weekend so we can’t do a biopsy until next week."
Geo, going into shock: "OK. Uh, thanks for the new hip. Whew, whew!”
End of the doctor's visit. Later in the day, I was taken downstairs to Radiology and an MRI was performed on my head, neck, chest, abdomen and pelvis. Good news! No primary sites or other secondary sites. However the mass that was revealed was surprisingly large: about 6.5 x 7.5 centimeters. That's a lot of growth for just three months.
August 28th, 2008: Early in the morning of Thursday, August 28th, I checked into the California campus of California Pacific Medical Center in San Francisco for my much-anticipated right hip replacement surgery. After a talk with the anesthesiologist about my preference for what type of anesthetic to use during the surgery, I was wheeled into the operating room, and, after a brief glance around at the assembled team, I went off to dreamland. In the weeks following my recovery, I would say that this day was the only time I was uncomfortable. I found it hard to adjust to a relaxing position in bed. Uncomfortable, but not in pain. I had dictated an email to my friend Gaetano and supplied a distribution list. So, on the day of my surgery, some 80 people were notified that I had been successfully operated on that morning.
Saturday, October 4, 2008
Background to my Hip Replacement: Around the time of my 60th birthday in November, 2006, I began to feel an ache in my right hip. At first it seemed that my right leg had grown just a bit and was now longer and out of balance with the rest of me. It caused me to hobble on occasion, but most of the time I felt fine so I assumed that it would pass like all the various strained muscles and other twinges that happen when you live in a body. However, ongoing discomfort caused me to go to Dr. Lisa Capaldini, my primary care physician, who listened to my symptoms and said, “Sounds like osteoarthritis. Most people take anti-inflammatory drugs for a few years and then they’re ready for a hip replacement.” I was shocked. Lisa has been my doctor for several years and I consider her a first-rate diagnostician. But I disagreed with her assessment. I told her I was too young for a new hip; we don’t have arthritis in my family, etc. So, she wisely said, “Well, let’s look inside and get an X-ray of your hip.” This was done, and the result came back with a bit of arthritis in the hip, but it didn’t seem like an emergency level that would warrant surgical intervention. I wish I had looked more carefully at that first X-ray.
What followed were almost two years of being increasingly uncomfortable. In my psychic class, we took a look at the reasons why I might have a painful hip. A class member recommended a chiropractor and I went to him for several sessions. There was brief relief, but nothing lasting. Another friend recommended acupuncture so I dutifully had treatments for a year. I have to say, I enjoyed the bliss state once the session had started, but again, no lasting relief. Eventually, I went to a physical therapist and we worked on my back, my legs, my hip, etc. In frustration, I went back to Lisa and reiterated my discomfort. This time, she sent me to Dr. Christopher Cox, a fine osteopathic surgeon who had done hip and knee replacements for several of my friends. Within half an hour, Dr. Cox had taken an X-ray and shown me the decayed cartilage in my right hip socket. Whereas the left side hip had a plump, evenly toned cushion between the ball socket and the top of the femur, the right hip’s cartilage was crumbling and uneven. To compensate for this decay, the bone had grown several spurs that were also pushing into the leg and pelvic tissue. Ouch.
I looked at the X-ray in Dr. Cox’s office and it took me about 20 seconds to understand that I needed—and wanted—to get a hip replacement. There was no way that I could heal that corroded cartilage in the image. After months of discomfort, I finally understood that Lisa had told me the truth of my condition back when I originally consulted her about my hip pain. The day after meeting Dr. Cox, I was scheduled to fly to Seattle to see the Mark Morris’s Dance Group and a performance of I Puritani, then on to Washington DC for a performance of Handel’s Tamerlano. Dr. Cox gave me a prescription for anti-inflammatory medicine designed to clear up the pain for—hopefully—a few years. “When you’re ready, you’ll be back,” he said.
While in Seattle I planned to see my friend Lorenzo, a fellow who I’d met years before when I ventured into his store: Distant Lands. Whenever I went to Seattle, I looked forward to seeing Lorenzo and wandering through the old Chinese and Tibetan furniture, sculpture and textiles in the store. This time, we had a very spirited visit with vivid story swapping about operas we’d seen, cities we’d visited, architecture we loved; a rapid, well-phrased conversation that happens between gay men who have seriously cultivated their aesthetic lives. This visit became more eventful toward the end of our time together when I asked him, “So, tell me about your partner.” He looked at me with some surprise and answered, “Partner? I don’t have a partner. But,” he continued. “Tell me about your partner.” I had the same response: “What partner?” Suddenly, our mutual assumption that we were each romantically unavailable evaporated. Before I left Distant Lands on Saturday, May 17th, I realized that I really wanted to create a loving, intimate relationship with Lorenzo. That knowing was sweet, comforting and very, very hopeful.
In spite of the surge for my heart in Seattle, taking the anti-inflammatory pills had no noticeable affect on my pain. For a day or two, I was shocked, but then I decided: Why wait? My next step, clearly, was to schedule the hip replacement surgery. When I returned to San Francisco, I called Dr. Cox and said, “I’m back.” I also phoned Lorenzo, told him how exciting it was to have deepened my feelings for him and included him in my decision to have surgery as soon as possible.
Through an increasingly uncomfortable summer, I flew to Portland on several occasions to help my folks get ready to move from their home of 52 years. I traveled to Santa Fe for opera, and I looked forward ever more fervently to the surgery and the promise of no more hip pain. My mantra became: August 28th, no more pain! August 28th, no more pain!
At the urging of my psychic teacher Victoria, I attended four sessions of hands-on and channeled guidance at the Aesclepion school in San Rafael. There, the healers worked to clear me of any resistance, competition or indecision about my upcoming surgery.
To balance this attention to pain, let me say that the Spring and Summer months were some of the happiest of my life. My professional life was busy and productive, working with people I admired. Time spent on the Board at Maitri Compassionate Care brought interesting challenges; also my membership on the HIV Planning Council brought me into realms of City government that were new and inspiring. I’d get up in the morning, put I clothes that pleased me, say hellos to all my friends at the bagel store and the coffee shop and go into work with a lot of human contact already nourishing me. Every day I had lunch with someone who I cared about, and during this period I discovered Boulette’s Larder at the Ferry Plaza Building. The food there honed my palate to a new level of refinement. I had tickets to opera, ballet, and the recitals that interested me. On weekends, I drove to my home in Glen Ellen that I shared with my land partner Ann. Work on the property took me back to the soil, to the worlds of plants and bugs and critters. Life was very, very good.
Finally, I emailed a wide circle of friends letting them know that I was going to have my right hip replaced. I put together a calendar for September, my first month of healing. After doing bedside care during the first fourteen years of the AIDS epidemic, I enjoyed organizing the care that I’d need once I returned home from the hospital. I asked a couple of friends in the food biz to help me with their catering skills, I asked other friends to visit me once I returned home to feel the warmth that our friendship created. I went on a field trip to the California Pacific Medical Center’s California campus to visit a hospital room and hear about what to expect from a nurse, a physical therapist and an occupational therapist.
In the last weeks of August, my ability to move around degraded alarmingly. I had always walked a lot, but now there were times in the days before surgery when I had to stop on the sidewalk and not move for a few minutes. After almost two years of increasingly severe pain, I was sooooooo ready to be healed.
What followed were almost two years of being increasingly uncomfortable. In my psychic class, we took a look at the reasons why I might have a painful hip. A class member recommended a chiropractor and I went to him for several sessions. There was brief relief, but nothing lasting. Another friend recommended acupuncture so I dutifully had treatments for a year. I have to say, I enjoyed the bliss state once the session had started, but again, no lasting relief. Eventually, I went to a physical therapist and we worked on my back, my legs, my hip, etc. In frustration, I went back to Lisa and reiterated my discomfort. This time, she sent me to Dr. Christopher Cox, a fine osteopathic surgeon who had done hip and knee replacements for several of my friends. Within half an hour, Dr. Cox had taken an X-ray and shown me the decayed cartilage in my right hip socket. Whereas the left side hip had a plump, evenly toned cushion between the ball socket and the top of the femur, the right hip’s cartilage was crumbling and uneven. To compensate for this decay, the bone had grown several spurs that were also pushing into the leg and pelvic tissue. Ouch.
I looked at the X-ray in Dr. Cox’s office and it took me about 20 seconds to understand that I needed—and wanted—to get a hip replacement. There was no way that I could heal that corroded cartilage in the image. After months of discomfort, I finally understood that Lisa had told me the truth of my condition back when I originally consulted her about my hip pain. The day after meeting Dr. Cox, I was scheduled to fly to Seattle to see the Mark Morris’s Dance Group and a performance of I Puritani, then on to Washington DC for a performance of Handel’s Tamerlano. Dr. Cox gave me a prescription for anti-inflammatory medicine designed to clear up the pain for—hopefully—a few years. “When you’re ready, you’ll be back,” he said.
While in Seattle I planned to see my friend Lorenzo, a fellow who I’d met years before when I ventured into his store: Distant Lands. Whenever I went to Seattle, I looked forward to seeing Lorenzo and wandering through the old Chinese and Tibetan furniture, sculpture and textiles in the store. This time, we had a very spirited visit with vivid story swapping about operas we’d seen, cities we’d visited, architecture we loved; a rapid, well-phrased conversation that happens between gay men who have seriously cultivated their aesthetic lives. This visit became more eventful toward the end of our time together when I asked him, “So, tell me about your partner.” He looked at me with some surprise and answered, “Partner? I don’t have a partner. But,” he continued. “Tell me about your partner.” I had the same response: “What partner?” Suddenly, our mutual assumption that we were each romantically unavailable evaporated. Before I left Distant Lands on Saturday, May 17th, I realized that I really wanted to create a loving, intimate relationship with Lorenzo. That knowing was sweet, comforting and very, very hopeful.
In spite of the surge for my heart in Seattle, taking the anti-inflammatory pills had no noticeable affect on my pain. For a day or two, I was shocked, but then I decided: Why wait? My next step, clearly, was to schedule the hip replacement surgery. When I returned to San Francisco, I called Dr. Cox and said, “I’m back.” I also phoned Lorenzo, told him how exciting it was to have deepened my feelings for him and included him in my decision to have surgery as soon as possible.
Through an increasingly uncomfortable summer, I flew to Portland on several occasions to help my folks get ready to move from their home of 52 years. I traveled to Santa Fe for opera, and I looked forward ever more fervently to the surgery and the promise of no more hip pain. My mantra became: August 28th, no more pain! August 28th, no more pain!
At the urging of my psychic teacher Victoria, I attended four sessions of hands-on and channeled guidance at the Aesclepion school in San Rafael. There, the healers worked to clear me of any resistance, competition or indecision about my upcoming surgery.
To balance this attention to pain, let me say that the Spring and Summer months were some of the happiest of my life. My professional life was busy and productive, working with people I admired. Time spent on the Board at Maitri Compassionate Care brought interesting challenges; also my membership on the HIV Planning Council brought me into realms of City government that were new and inspiring. I’d get up in the morning, put I clothes that pleased me, say hellos to all my friends at the bagel store and the coffee shop and go into work with a lot of human contact already nourishing me. Every day I had lunch with someone who I cared about, and during this period I discovered Boulette’s Larder at the Ferry Plaza Building. The food there honed my palate to a new level of refinement. I had tickets to opera, ballet, and the recitals that interested me. On weekends, I drove to my home in Glen Ellen that I shared with my land partner Ann. Work on the property took me back to the soil, to the worlds of plants and bugs and critters. Life was very, very good.
Finally, I emailed a wide circle of friends letting them know that I was going to have my right hip replaced. I put together a calendar for September, my first month of healing. After doing bedside care during the first fourteen years of the AIDS epidemic, I enjoyed organizing the care that I’d need once I returned home from the hospital. I asked a couple of friends in the food biz to help me with their catering skills, I asked other friends to visit me once I returned home to feel the warmth that our friendship created. I went on a field trip to the California Pacific Medical Center’s California campus to visit a hospital room and hear about what to expect from a nurse, a physical therapist and an occupational therapist.
In the last weeks of August, my ability to move around degraded alarmingly. I had always walked a lot, but now there were times in the days before surgery when I had to stop on the sidewalk and not move for a few minutes. After almost two years of increasingly severe pain, I was sooooooo ready to be healed.
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