Thursday, April 16, 2009

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.

Sunday, April 5, 2009

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.

Thursday, April 2, 2009

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.