February 16, 1997 – Another Day of Massage and Acupuncture!
I woke up early this morning with the idea to improve the web site by adding the practice pages. I got fairly far with the basic relaxation technique when it became time for my massage with Elyse. She is so wonderful! How lucky I am to listen to the best music and have a wonderful massage!
Just before my massage, my back started hurting, and by the time I got to Dr. Vu, it was hurting pretty badly. His treatment helped a lot, but because of the nature of my cancer treatment plans, I don’t know when I’ll be able to see him again.
I spent the evening reviewing the literature from T-Up, visiting with friends, reading Dr. Siegel’s book and listening to meditation tapes.
Today was one of the first days without appointments. Although I felt rested when we left the Inn, I felt rather down and low on energy all day. We walked around St. Helena and ate lunch at Don Giovanni’s again. When I got home, I listened to a Simonton tape, and got totally recharged!
Today, Mala and I celebrated our sixteenth anniversary. We did this by heading up to the famous “wine county” in Napa County, California. We are so fortunate to live only 45 minutes from this most beautiful part of the country. Mala had made reservations at the Silverado Inn, which we were lucky to get at the last minute. With lunch at Don Giovanni’s and dinner at Tra Vigne, we had two wonderful meals at our favorite places.
Before heading north, however, we met with Dr. Francine Halberg at the Marin Oncology Center attached to Marin General Hospital. Through Sara Huang’s guidance and support, we decided to use Dr. Halberg for the radiation therapy, which is scheduled to begin on February 25, along with the chemotherapy. The consultation with Dr. Halberg went very well as far as it could go, but she couldn’t tell me that this was going to be an easy protocol (RTOG 95-06). She mentioned that Shipley had great success with this protocol and that it was evaluated thoroughly in France and found to be very successful. She explained that I would have to be seen again on Tuesday, February 18 to do a test run to map out the area to be irradiated, which was part of the RTOG 95-06 protocol.
Before we left for the “wine country,” we stopped in the Circle Library at the Marin Oncology Center and checked out a few tapes, including one by Dr. Carl Simonton, whose work was just beginning to be noticed when my son had cancer twenty-one years ago. Another tape was by Dr. Rachel Naomi Remen.
I called Dr. Hoffman this morning and spoke with him about the treatment of bladder cancer with cesium chloride and/or aloe vera concentrate, and he basically said that these were not to replace chemotherapy and radiation. This was confirmed by a later conversation with Michael Broffman, who knew of Dr. Hoffman, and told us that Dr. Hoffman’s protocol was something to consider at the end of the Shipley treatments.
Then we received a call from Dr. Neuwirth. He said that Dr. Gullion had called him about the Shipley method, which requires an additional transurethral resection of the bladder tumor (TURBT), which he wanted to schedule for next week. We spoke to Michael Broffman about this and he recommended that we talk to Dr. Carroll. After further discussions with Dr. Huang, Dr. Gullion, we finally received a call back from Dr. Carroll. He said that he was out of time next week and the week after, so he wouldn’t be able to do anything until the week of February 24. He suggested that I go with Dr. Neuwirth, whom he said was a competent surgeon and could do this job effectively.
The last time I had a TURBT, there was no plan to do anything other than a radical cystectomy. Now Dr. Neuwirth would go in with the idea of doing bladder saving therapy. This could account for Dr. Neuwirth’s apparent reticence to do the second round of resection.
This morning I spoke with Francine Halberg (H 10), a colleague of Dr. Wayne Torigoe. She knew who I was because she had already spoken with Dr. Gullion and Dr. Shipley! She wants to see me to discuss the difficulties and side effects of Dr. Shipley’s regime.
On the way to NGC, I listened to a tape of a lecture by Dr. Allen Hoffman in which he spoke about his work with a concentrated form Aloe Vera and the use of cesium chloride in the treatment of AIDS and cancer. The lecture was very understandable, and I want to see if he is simply selling, “snake oil!” Later that evening, I spoke with P. R. and Dr. Huang about is, but was unable to get any further information.
In the morning, I spoke with Dr. Gullion over the phone and told him that I wanted to follow the Shipley treatment precisely. He said it would be no problem. I also spoke with him about Michael Broffman’s protocol. While he cautioned me about taking antioxidants during the first several days of chemotherapy, he was willing to cooperate. I explained to him that Michael had broken the protocol down into three parts, as described above, and he seemed to feel better about that.
In the afternoon, I had a guided imagery session with Dr. Martin Rossman. The session followed a discussion about my treatment options and the one I selected. Marty had been following my choices since day one, so he was familiar with what I was going through. He thought that I made the right decision, and that I had a lot of additional things going for me.
The guided imagery session was extremely relaxing. It encouraged me to experience reality based anchoring in my body, which I did in a big way. I contacted my “inner advisor” and got in touch with a sense of deep spirituality. From the vantage point of a grove of trees in Point Lobos State Reserve, I was able to feel my connection with the earth and really felt good. My illness seemed thousands of miles away, as I was able to ground myself in what I was experiencing in the moment. I felt that for me, a strong sense of integrity is directly connected with listening to my body and acting accordingly.
As deep as the session with Marty had taken me, I became confused after taking a long walk and picking up the kids from school. After speaking with my wife about the events of the day, I was experiencing a lot of pressure to begin the therapy as soon as possible – like February 17, when I had it in my mind to begin February 24. I decided to take the evening off and watch public television which portrayed the magnificent engineering accomplishments at Stonehenge and of the Incas.
Up until now, I have been reporting on external events and meetings with physicians. It has certainly been a whirlwind of activity for the last two weeks, but I haven’t mentioned too much of what is going on inside. Believe me, a lot is taking place and has transpired. I have continued to do “mind stories” daily, sometimes three or more times a day, especially when I feel tired. While the method I use to invoke the relaxed state of mind that I need to do my meditation is described elsewhere, the content of my meditation is made up of at least three kinds of processes.
The first process I use is based on Buddhist meditation. Having been trained in both Zen and Vipassana, I use a hybrid method that incorporates the best of both for my purposes. The method involves following the breath in the belly, which is a common practice in both Zen and Vipassana, with a healing twist. What I used to do prior to my diagnosis was “breathing in … breathing out” – following the physical movement of my abdomen. The modification I make, based on the teachings of Thich Nhat Hanh, along with bringing my attention a little lower to my bladder, I generally repeat, “Breathing in, I know that I am healing myself, … breathing out, the cancer is gone!” Much of the time, when the breath is fairly short, for example, I use the trigger words, “healing” for the in breath and “gone” for the out breath, knowing that I am referring to the elimination of the cancer cells.
The second method is to visualize the insides of my bladder, and visualize that I am scraping off the cancer cells into the bladder, to be easily eliminated through normal bladder function. This is a quite effective technique, as sometimes I really feel the cells dying and being eliminated. This process takes a good deal of concentration to be effective, but many years of visualization practice have helped in this area.
China Beach, Point Lobos
The third method is to visualize events in my future with a positive regard. For example, I see myself playing tennis in Sausalito, Edgewood Park and Boyle Park, with my different tennis buddies. Or, I might see myself lying on China Beach in Point Lobos State Reserve, and listening to the waves crash against the shore. I can smell the sea air and virtually taste the salt water. I feel the texture of the sand on my feet, legs, buttocks, hands, and arms. Or, I might visualize R.’s graduation coming up in June or a trip to Hawaii, or whatever my mind brings up. I’m not focusing on my disease at all, as these events take me beyond recovery.
Anna’s group consisted of mostly women who had already recovered from cancer. There were several ladies who were in the throes of treatment, but they were in the minority. Anna began by allowing my friend J. M. (the same friend who took me to lunch after “yellow stream”) to tell his story of three and one half years of prostate cancer which is no in total remission. Everyone was encouraged by his story.
She proceeded to direct us to get grounded in our chairs and begin breathing in and out. Naturally, my Buddhist practice came to mind and I was in a rhythm of “healing… gone.” We then started moving in time with our breath, expanding way out with our arms open wide on the in breath and contracting inward on the out breath. This theme was developed to standing, bending, and movement around the room to Native American music of some kind. We eventually had some group interaction through the movement and all along Anna kept us focused on our breath. She would have us focus on being grounded, relaxed, aware, centered energy (grace).
After the period of movement, we were to draw a picture inspired by the movement. This was a difficult task for me, for I have never enjoyed drawing too much. With her inspiration and support, I drew the “yellow stream.”
February 9, 1997 – A Vietnamese Buddhist Physician Acupuncturist
Elyse came to my house to give me one of her wonderful massages that M. C. paid for. It was relaxing and very enjoyable.
In the middle of the afternoon, I went to see a Vietnamese Buddhist acupuncturist, Van Vu, who spends his Sundays in Mill Valley. He was very perceptive and stated that while I had good chi, I had too much hate inside, and suffered from bad sleep. He was right on!
That night, we all had dinner with J. and L. C. – the ones who had been so helpful at the consultations with the physicians – and no mention was made about treatment options. We just had a good time and over ate her wonderful sesame chicken recipe!
Saturday morning, I received a phone call from R. M. that Suzanne was ill and that R. and I were to lead the workshop that was scheduled for 11:00. This was really weird! We had to improvise most of the morning, but somehow, we managed. Several people, including myself, explained how Suzanne’s “new therapy” worked and how they felt about it.
After the strange workshop, I had my first walk outdoors since the surgery. Boy! Did it make me exhausted. When we got home, I really had to listen to my body and I took a long nap.
February 7, 1997 – I Don’t Want Abominable Surgery!
Friday morning, I had to have a sonogram for my gall stone. Aside from the long wait, it went fairly smoothly. When I finished, my friend, T. R. was waiting for me. We had breakfast together and talked about my options.
After T. left for work, I joined a cancer support group at Marin General led by Leslie Davenport. She had worked with my wife the previous year doing guided imagery for her hip problem that was caused by an automobile accident in 1992. I was the only man, but this didn’t stop me from trying to find out what was the best course of action. One of the women said that she had no side effects from the chemotherapy whatever!
In the early afternoon, I had another session with Yokey Kim. Once again, I had a wonderful treatment.
Then came the long-awaited appointment with Michael Broffman, a Chinese herbalist and acupuncturist, who runs the Pine Street Clinic. He has a fabulous reputation for knowing a lot about cancer, and my wife and I were blown away by his knowledge of bladder cancer. We talked at great length about alternatives to radical cystectomy. One surprising note was something that no other physician mentioned. Michael said that after seven or more years, they may have to go in for another operation for the urinary diversion. After this statement, decision was really moving rapidly towards the Shipley approach! Michael proceeded to tell us that there is a lot of bladder cancer in China and that a combination of traditional Chinese medicine and chemotherapy, with or without radiation, is the primary means of dealing with the disease.
By the time we left Michael’s office, we felt comfortable that the Shipley method combined with the protocol Michael was going to send us would offer me a better chance than just the Shipley method alone.
