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

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

Dr. Jahan:

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

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

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

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

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

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

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

Thanks for all your help with this,

George Stevens

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

May 11th, 2009: It has been a difficult past few days. On Friday, perhaps urged on by the full moon, I became aware that I am not getting better. The cancer is not going away. On a good day—meaning a day when I don’t have a lot of discomfort—I’m aware that I can co-exist with the cancer. I’m here and it’s here, and we’re here together. On a bad day, when the pain interrupts me a lot, then I don’t feel so good about sharing my body. When I start to extrapolate the cancer growing and more pain, it’s a quick trip to overwhelm.

I woke up on Friday morning with the overriding thought that I needed to reconsider owning my property in Sonoma. I haven’t been up there much since I’ve been ill, and in the last month, I’ve rented out the house. But the underlying urgency was that I need to decide what to do about the place because I am not getting any better. That thought was a shock to me: “I am not getting any better.” In many ways, it had the force of a new idea. New, because the last time I talked with Dr. Jahan, he said that I was not getting worse. The tumor had not grown. Nor had it shrunk. So where did this idea come from that I am not getting better? It was my own experience of living in my body, feeling the coming and going of pain, becoming convinced that the tumor was growing.

This has been a problem for me throughout my illness: I go through periods where I become convinced that the tumor is growing. For one thing, I can touch it and estimate its change in size. Also, I have a history of being wrong about this growth. The last time I was scanned, I was certain that the tumor had become much larger whereas it had not budged.

So, off to work on Friday including a cup of coffee with my friends Sheila and Maureen who I know from working at Wells Fargo. We were having a fine visit, when I brought up my conclusion that I am not getting better; that it’s just a matter of time before the tumor really takes over. All of us were shocked, followed by tears and fervent wishes that it weren’t so. From that point on through most of the weekend, I returned to that thought over and over. I am not getting better; my tumor is growing and I will die from this.

Saturday, I had tickets to the Met broadcast of La Cenerentola in Santa Rosa and I had been looking forward to the performance for almost a year. There were two newer singers—Lawrence Brownlee the tenor and Elina Garanca the mezzo—who I really wanted to hear. As I drove North to Sonoma, I was shocked at my dual awareness. It was as if I was both alive and about to depart life. I looked at the rich countryside in the early morning sun as if I would never see it again. I wondered if I would ever drive to Sonoma again. Really, it felt delusional except I didn’t seem to be forcing this awareness, it simply appeared unbidden and disturbing. As I started driving into wine country, I began to seriously plan a goodbye party that I would get to attend. I've avoided having parties for a lot of people even though I know a lot of people. For once, it would be a treat to get everyone together and thank them while I still had mobility and coherence. Yes, a party and it had better happen soon.

A shock of driving to Sonoma was that it really hurt to be sitting in the car. The area around the tumor felt sore from the minute I sat down. But, I am a determined opera goer, so I completed the trip. Then, for three and a half hours, I had the joyous experience of watching a well known opera performed by two dazzling new singers who hopefully would have long, exciting careers. I felt totally engaged inside the theatre. Afterward, I reflected on all this fresh talent that had so generously entertained me, grateful to know that life would go on. I knew that. The poignancy was that I could barely imagine going along with it.

Then, off to the house in Glen Ellen, where I talked with Ann about my concerns. She listened, and said that this was something she had certainly thought of, although it was no pleasure to hear this confirmed. It was a beautiful day, but I became increasingly agitated and jittery. I didn’t want to garden. I looked at how the person living in my house had arranged the place to suit her. I could scarcely remember that I used to live there. I felt cranky, disoriented, unable to connect with being on the property. Finally, I took a short nap and drove back to San Francisco.

Once home, I felt both safe enough to become even more distraught. I had no idea I would die this soon. With a regular cadence, I kept hearing, “You’re going to die. You’re going to die.” It felt like I had never had this thought before and truthfully, I had never been able to hold onto this thought for such a sustained time. I spent the evening weeping, blowing my nose, unable to concentrate. Then, I slept for about twelve hours. Sunday was more of same: “You’re going to die. You’re going to die.”

I'm not anxious about what happens after death because I have a lot of faith that life continues with a great deal of purpose and clarity. For me, the shock of confronting my death involves having to change gears and wrap up my worldly business rather than keep going in my usual patterns and habits. Of course I can do all the necessary arranging; I’m an organized guy. Property can be turned over, furniture can be given away. I am well rehearsed in saying goodbye to people. Should I have a farewell party? Would I be in a wheelchair by then? Many of my new decisions would be about not buying into the future. No more opera tickets. By mid-Sunday, I had renounced my trip to China since there probably wasn’t time to buy a ticket and go.

Sunday evening, my friend Ellen called and then Lorenzo, and by the time I had finished talking with both of them, I had come in for a landing. I could remember what I went through, but the constant reminder of my mortality was quiet. I remembered the stillness I used to experience after completing a psychedelic trip; this quietness was similar although I wasn’t as exhausted yesterday. LSD and mushrooms were more physically taxing.

What to say about all this? Today, I went to work and remembered what I had experienced and endured. I could remember it well, although I didn’t emotionally connect with the painful urgency of facing my death. It was as if it had happened a while ago rather than yesterday.

As I said to people over the course of the weekend, “I’d love to be wrong about this.” Today, I realize as a person with an unhealed cancer that it’s expected to have these feelings now and again. I can’t say that I regret the experience because it woke me up to possibilities that I haven’t spent much time considering. And I wouldn’t want to live in this awareness all the time.

May 7th, 2009: During the past few days, I’ve been on a very unpleasant rollercoaster with my pain medication. After a couple of days of upping my dosage to 200 mcgs per day, I suddenly realized that I was way over-cooked. I felt drugged but not high. It was like I was suddenly my own science experiment. A few more drops here, ooops, too much! I slept for 12 hours a day, and I couldn’t concentrate to meditate or do any imaging. Other times, I felt a lot of physical discomfort. What a dreadful spot! I was over my limit with opiates and still in pain.

After talking with my therapist, it became clear that I need more information about pain management. So far, I have been relying on medication to do the heavy lifting, and I seem to be at the far edge of that strategy. So, what to do? That’s what I could find out in a pain clinic.

After much discomfort, I took off one of my 100 mcg patches and applied a 50 mcg dose. So today I am back to the 150 amount and feeling better for it. Today, I feel almost normal. However, I am still shaken by recently pitching so far into the zone of pain alternating with over-doped.

May 5th, 2009: The blog drought has ended. I'm glad to reconnect to an enthusiasm for putting out the word about my health. That energy to communicate went away for much of the past few weeks due, I suspect, to physical discomfort that made it really difficult to sit down and write. I did a bit of juggling with my fentanyl patches, upping the amount from 100 to 150 mgs a couple of weeks ago. Then, this past weekend, I upped the dosage again to 200 mgs. The patches deliver an opiate transdermally and each patch lasts for three days. They are definitely an ally against physical pain. However, I am still getting used to this high dose. I’ve never taken so much before. At the end of 2008, I was up to 150 mgs, then I dropped back to 100 mgs. Now, at 200 mgs, I get tired in the afternoon and my nap has a new urgency that I didn’t have previously. However, the pain is largely gone which makes my awake time more pleasant.

So much to write about that’s happened in the past few weeks. I had a visit from Lorenzo in Seattle which was wonderful and led me to a deeper sense of our connection while also giving me much to contemplate about partnering. I went to a terrific workshop about dissolving stuck energy. And then there were the concerts: the Philharmonia Baroque’s production of Athalia and the final ballet in the series that Ann and I attend. In addition, work has kicked in with an interesting project that pulls forth my interest and creativity every day. I am so grateful for that: being able to go to work and solve interesting problems is a privilege and a joy.

Over the next days, I’ll give more in-depth though to the events and feelings that are guiding me these days. Short summary, I feel like I’m in a quiet zone where my health is relatively stable although I am by no means cured or over the cancer. I wish I were, but I’m not. So, more blogging about all of that.

April 16th, 2009: It’s been a couple of weeks since the last posting, a lapse of time that hasn’t happened since my visit to Southern California. Since getting my reprieve from Dr. Jahan, I have been settling into a cultivation of normal. This means going to work more hours each day, and the timing has worked well because I've started a reasonably large project. Also, I’ve been dealing with some pain management ups and downs for the first time in several months. As a result, I’ve decided to up my dosage of transdermal narcotics to take the edge off my discomfort.

A couple of weekends ago, my friend Dan Avshalomov was in town with his group, the American String Quartet. My friend David and I went to hear them at Hertz Hall on the Cal campus in Berkeley. The program opened with Haydn, progressed to Alban Berg and after the intermission moved to the Dvorak piano quintet with Menahem Pressler at the keyboard. What a wonderfully resonant piece; echoes of Schubert and lavish writing for all the instruments, particularly Dan’s viola. A wonderful afternoon followed by a visit backstage with the players after the concert.

During my visit with Dr. Jahan at the first of the month, an event occurred that may have repercussions. When he came into the clinic room for our visit, he was accompanied by a physician who introduced herself as visiting from Shanghai, China. “Oh,” I exclaimed, “I’ve always wanted to visit China, particularly your city. And also Beijing and Guilin and the Great Wall.” Without missing a beat, Dr. Jahan, piped up, “Don’t wait. Do it now. If that’s something that you really want to do, start planning and do it.” So I’ve been imagining my trip to China. At Passover this year, David and Judy Orzech talked about their China tour a few years ago and how much they enjoyed the three weeks that they were on the road (as well as on the water for the Yangtze River portion of the travel). That would be my ideal amount of time: three weeks. Details to follow as they unfold.

April 4th, 2009: Over the weekend of March 28th and 29th, I was in Portland, Oregon where my family held a memorial service for my Mom. First, let me say that it was good to have a few weeks from the time of my Mom’s death at the first of the month to plan for her service. I’m glad that we didn’t have a funeral rushed by the conditions of her body after death. With the extra weeks, Betsy my sister had time to notify people, post the obituary and organize the memorial service. In the meantime, my dad developed pneumonia and Betsy also managed his stay at the hospital and then moved him to a convalescent home where his breathing and fluid retention could stabilize.

Betsy was great about sending drafts of memorial materials to me, but basically she did the heavy lifting for setting up the service. I'm in awe of the circumstances that side-lined me after almost 30 years of end-of-life care. This allowed my sister to step forth and do a great job in my Mom’s last days and in organizing the memorial.

I flew to Portland on Friday and my first task was to pick up my Mom’s ashes at the crematorium. It was my Mom’s wish to be interred in her family niche in Piedmont where she grew up. After much of a lifetime in Oregon, she returns to California. With the ashes in the trunk of my rental car, I stopped by the convalescent home to see my Dad for the first time in many months. When I walked into his room, he was asleep and a nurse came in to wake him up. I said, “Hey, good to see you Dad.” As he looked up at me, he said, “I don’t know who you are, but I recognize your voice.” “OK,” I said, “Whose voice is it?” And he replied, “You’re George.” Once identified, we had a good visit, and it felt to me that my Dad would be able to get through the rigors of the upcoming weekend. His voice was clear, he walked with a spring in his step and he was alert to his circumstances.

Then, I drove to the new Portland home of Kris and Darius Abbassi, the parents of my godson, Willem. In many ways, Willem provided the counterbalance to the rest of the weekend. At age a year and a half, he is just starting to explore this complex world. His mom and I took him for a long walk, and it was wonderful to watch Willem take all the time he wanted to look at a patch of moss, smell daphne flowers or whatever absorbed his attention. I had missed Willem a lot because his godmother Christine and I would visit him monthly when he lived in San Francisco. This was my first opportunity to see him since last August just before my hip replacement and the unexpected diagnosis of cancer that has changed my life.

On Saturday Betsy arrived in Portland and we both had lunch with Dad at his assisted living apartment complex. Since he’s been in the hospital or then a convalescent center for a couple of weeks, it was heartening to see his neighbors stop by our table in the dining room to welcome him back home. The community spirit of the place is strong, and it reassured me that my Dad would be surrounded by many people who cared for him as he works through the grief of my Mom’s death.

A couple of weeks earlier, Betsy and I decided to have a brief ceremony on Sunday morning where we would scatter some of my Mom’s ashes at the home where she had lived for 52 years. The house is still unoccupied after my parents moved last summer, so Betsy informed a the neighbors about the plans. What a surprise to drive my Dad to his old home and see about twenty neighbors and relatives waiting for us in the yard. We thanked everyone for showing up, and then I gave a brief speech about how much Mom loved living in her home, gardening and hosting her friends and neighbors for coffee and dinners over the years. I opened the container with the ashes and said that I would let my handful of her remains guide me to where they wanted to be placed. First I went to the pine tree that my Mom had shaped in a Japanese style, then the place in the yard where she sat under a leafy walnut tree during the summer. Finally, I took the last of her ashes to the garden where she cultivated raspberry canes. I hadn’t thought about it, but I realized that my Dad might want to participate. When I asked him, he seemed taken aback, but then willing. With his handful, he went to the same spot under the walnut tree where they had spent so many summer hours reading or visiting with friends. He said, “Ruth, you were so wonderful to all of us. We love you so much, and now we miss you. We miss you.” Then he threw the ashes high into the air and burst into tears.

In the couple of hours before the memorial service we had a family lunch: Betsy and her husband and daughter, Dad and me. Betsy’s son Christopher goes to school in Pullman, Washington and air travel had been canceled that morning due to snow. At the last minute, he was unable to join us and was definitely missed.

Then, off to St. Barnabas church which I attended all through childhood and high school. Due to my weight loss from the chemo, I was able to fit into a black suit that I’ve owned since the mid 70’s. When I checked to see what it looked like with a black satin tie, the overall impact was so dreadful that I decided on a tie with more color; something that my Mom would have enjoyed. Also, I had just started to appear in public without my cap since my hair is growing back. Dressed and ready, I went to the door of the church to greet people as they arrived. I knew most of the people but hadn’t seen most of them for decades. It was particularly moving for me to welcome my old childhood friend John Baker, who helped his 102 year old Dad navigate from the car to the church. Also there was Leonora Guinazzo my high school Spanish teacher who has been such an inspiration to me over the years.

The service was simple and effective, three hymns were sung, the gospel was read and then it was time for the speeches. I went first, and read the text that I posted on this blog on March 24th. It ranges across the span of my Mom’s life, and it was well balanced by Betsy’s eulogy which focused on the last days of my Mom’s life. She talked about what happened and who was there to help in all the many ways that help was needed. Then, the church deacon spoke about how Ruth had been her friend for many years; they’d played bridge together and developed bonds of affection and support that sustain and enrich so many women’s lives. I had heard my mom talk about her friend who had been ordained, but I had never met her before this ceremony of goodbye.

The reception afterward felt warm and vibrant: many people with many stories about Ruth. Clearly, she had warmed many lives with her interest and concern for each person. Two family members had traveled a long way to attend the service, so we had leisurely dinner afterward and then the day was over. Amazingly, my Dad had paced himself through the long day. I spent my final hour that night visiting with my hosts Kris and Darius, before getting up the next morning and returning home to San Francisco. Along with me, I’ve brought my Mom’s ashes. Right now, they are sitting on a Japanese chest in my living room. But in the next few weeks, I’ll drive them over to Oakland for interment in the family niche in Piedmont.

During the mid-eighties and the first half of the nineties, I attended many, many memorial services for friends who died of HIV. Each service was special just as each life was special. I have to say, I am proud and grateful for the ceremony that was held for my Mom. It was about her and the people who attended had clearly been touched by her love. Although I said goodbye to my Mom over the telephone, it still hasn’t hit me that she has died. It will. It just hasn’t happened yet.

April 2, 2009: After arriving home from my Mom’s memorial service in Portland, I went into a weird tailspin that centered on anxiety about my tumor. Basically, I felt like it was growing and that I no longer knew what to do to stop the growth. I had tried drastic amounts of chemo. I had veered to another extreme and lived on wheatgrass juice and raw vegan food to detoxify my body and help it heal. Yet I still experienced a daily fatigue that required a late afternoon nap. Then, from places in my mind that I hadn’t heard from yet, I realized that I could die from this tumor. It was as if I had not had that thought before, and it took over on Tuesday. I had waves of psychic shock focusing on “Das Ende.” The End. Had I finished my legal paper work? What to do with rugs and glass and furniture? No need to buy any new shirts for this summer; my task would be to get rid of my clothes. The End. No more event. Cancel subscriptions, etc.

While getting overwhelmed I realized that within a day’s time, I would talk with Dr. Jahan about the results of my scans from the previous week. That would do it, for sure. Then I’d really get the bad news. Plus, I hadn’t seen Dr. Jahan for two months, and I became convinced that he’d start taking my inventory about how I had walked away from treatment, etc. Well, I thought, I’ll just hide behind the fact that my Mom just died. No doctor can stand up against that. So, having put together my strategy of how I’d handle Dr. Jahan, I resumed having my dismal thoughts of dying soon. The culmination occurred over dinner with my friend Bob Currier where I said that I didn’t know how to combat my tumor. Given this lack of ability, I would die. Tears ran down my face. Dinner arrived. Bob listened carefully and reminded me that I was more than my tumor. Also, he reminded me that having a meditation practice was not inconsequential. Still, I felt like I had finally understood something simple and inevitable and dreadful: I would die soon enough.

I arrived at clinic and visited with Eileen prior to seeing Dr. Jahan. I summarized my feelings about the strength of the tumor’s grown and my own relative weakness. Eileen counseled patience and a day at a time. And then, we were in the clinic room and Dr. Jahan was coming through the door. He seemed happy and friendly like he wasn’t going to start out with an admonishment to start chemo right away. And, in fact, he did no such thing. Rather, he started by saying, “Your scan results are just amazing. I can’t believe it. There has been no tumor growth over the past two months. None. I am so surprised. I looked at the results really carefully. You must be doing something right.”

I was totally stunned, but managed to say, “I know nothing. That’s the last thing I expected to hear you say. It’s been feeling to me like that tumor has increased in size, especially toward the back of my groin.”

“Well, it hasn’t grown at all. Not a bit. Really, it’s quite extraordinary. In fact, I’d say you get a breather for a while. I don’t have anything to prescribe at this point. No reason to do chemo if your body is holding firm and the tumor isn’t growing. So I’m thinking that you should have more scans in three months.”

“Three months!” I gasped.

“Sure. I don’t want to wait too long. And if anything changes for the worse, more pain, any bleeding, let us know right away. In the meantime, keep doing what you’re doing.”

So that’s what happened to me as my scans were read on Wednesday. The tumor is not getting larger (nor has it gotten smaller). I do not have to wrap up my life in the next six months. Rather, I'll have time to live more with the cancer and do what I can to diminish it’s size as well as shrink it’s hold over my life. What a surprise.

For the first day, I didn’t really believe the good news. It wasn’t until I started telling people and saw their looks of astonishment and happiness that I began to understand that this was happening. Now, a day and a half later, it feels more real. I’ve had time to get used to the idea of living longer. I’ve started to imagine how I want to celebrate. What a week.