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“There’s Always Things We Can Do”

I started chemotherapy and radiation again today and it was “no piece of cake” (tomorrow is my brother’s birthday!). I had to be stuck four times before the i. v. took. In addition, the oncology group seemed to ignore the request of the radiation group that I be downstairs for my first radiation treatment by 12:30. So, Dr. Gullion cleverly sped up the protocol to grant their request, and I don’t know if this is good or bad, so I won’t pass judgment on it right now.

I was fairly wiped out after the chemotherapy and listened to a tape of Helen Palmer. There was so much good material in the tape that I easily fell asleep two or three times! I guess I’ll try to use this tape rather than sleeping pills. Some day, I’ll write more about what’s on the tape.

L. C. took me to the second dose of radiation. During our trip in the rush hour traffic, I was telling him about my daughter’s paper, Zen Buddhism: Its Beliefs and Effects on Society, which she is presenting tomorrow night. In spite of my so-called weakness from the chemotherapy, I experienced that her opening statement,

A special transmission outside the Scriptures;
No dependence upon words and letters;
Direct pointing to the soul of man;
Seeing into one’s own nature.

was true and felt a wave of ecstasy move through my body and focus on my bladder.

My wife really needed to go to the “Care Givers'” group at the Center for Attitudinal Healing tonight, so I went to the “Life Threatened” group. It was the best experience I ever had at the Center! I was moved so much by many of the opening statements that I felt the desire to speak first. I shared the difficulties that I was experiencing with my wife, and then the beautiful experience I had at Anna Halprin’s studio last week. Then I told the group about the email I sent to the Dalai Lama, which I quote here:

Dear Your Holiness:

I have been a practicing Buddhist since 1985.  I have been invited to the Tibet House Reception at the home of Ingrid and Reuben Hills in San Francisco next week, but I am unable to attend because I am recovering from bladder cancer and the requested donation is a little too steep for me.  However, I have inspired many of my wealthier friends to donate to Tibet House.

If I were to attend, I would ask you the following question:  I know that Padmasambhava is known to have said, “When the iron bird flies and horses run on wheels, the Tibetan people will be scattered like ants across the world and the Dharma will come to the land of the Red Man!” I want to know, first of all, how authentic is this quote?  Secondly, I want know how he could have foreseen ALL of these developments back in 828 A. D.?

Thank you so much for your response.  If you have time, you may want to visit my web site, “Yellow Stream” to see just how much mindfulness meant to me on my healing journey.

I love you and adore the Tibetans I’ve met.  In 1975, I visited Bodh Gaya and the Bo Tree of the Tathagata!

Thank you so much.

I raised the same questions with the group and everyone was touched! I also shared my experience in the car on the way to radiation therapy.

The other members shared so much valuable experience that I felt honored to be there. Because of the guiding principles of the Center, I feel bound not to reveal their stories except to say that one member’s significant other had made the above statement when news that was not so good was revealed. I offered that member and two other members who touched me deeply by their stories to do guided imagery with them if they wanted. In addition, since the Center is having financial difficulties, I felt moved to offer a workshop called, “Zen and the Art of Healing,” with all proceeds going to the Center. The two facilitators I spoke with about the workshop were wonderfully supportive! At the end of the group, I passed on the healing stone I received from Anna Halprin and passed around the group at the Center to one of the participants who I felt needed it more than I. The person was extremely grateful and said, “Do you mean I can keep it?”

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No Anna, No Dance!

Today is Monday and Anna is not having class tonight. But I have to prepare for chemotherapy tomorrow morning. This involves having blood work done early this morning and a visit to Dr. Gullion at 10:00. So I arrived at Meris Labs at 9:15 A. M., and thankfully, I had my lap top with me so that I could get some work done.  I didn’t get to see Dr. Gullion until 11:15!

We discussed the protocol and my blood tests. He thought that in my situation, it was a good choice and he wished more bladder cancer patients consulted him before they had a radical cystectomy, so that at least a bladder sparing protocol could be attempted. Although my white blood count was the lowest they had tracked, it does not inhibit continuing the protocol. So, tomorrow, we start again, but for the last time.

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Free of Cancer!

My first appointment this morning was with Dr. Gullion.  He was rather pleased that the induction phase of the Shipley protocol worked so well.  He was also a little concerned about the 3 mm growth that was cut out of the surface of my bladder. He basically said that that was the nature of my bladder, and I would have to be watched. Nonetheless, we are still on the Shipley protocol and we begin chemotherapy and radiation next week. The basic protocol is the same, with chemo on Tuesday, Wednesday and Thursday with 5FU and cis-platin, and radiation twice a day on Tuesday and Thursday. The whole process repeats itself after a week off. Then I am finished with the protocol. I plan to call Shipley today to discuss the situation with him.

My next appointment was with Leslie Davenport. My major concern in speaking with her was about the 3 mm tumor that was removed. I am still confused about how it could be there, with treatments I’ve had so far, but now it is removed and my bladder is free of cancer. We worked on the sadness I felt as a result of having some cancer removed, and I connected it with a desire for intimacy, especially with my wife. I apparently still need to work out some personal problems having to do with asserting myself, while maintaining a close and intimate relationship with my wife.

To celebrate my recovery, T. R. took me lunch at Insalata in San Anselmo. We had a very nice lunch, followed by a stroll by Gelato and a chat in the park. T. is very grateful for my recovery and very inspired by it.

All afternoon I felt extremely tired. I suppose it was from too much running around on Monday and Tuesday. Therefore, I’ve decided to try to take it easy today.

I went to the Center for Attitudinal healing last night and shared my happy news. Everyone was happy for me, and I continued to express my mission of presenting alternative methods as something to be done in conjunction with convention medical practice. I shared the T-Up information with one of the patients who seems to be reaching the point of no return. This patient has a choice for surgery for which the recovery period could be as long as the remaining of his life if he doesn’t have the surgery. The poor patient really has some tough decisions to make, and perhaps I can help him.

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Two-Pointedness!

April 8, 1997 – Two-Pointedness!

Today I went in for a check-up with Dr. Gullion, and saw Dr. Bobbie Head instead. My blood counts were good and there is no need to worry about infection. I asked about a more complete exam, but I was told that this was only to check the blood counts.

I had a second massage at the Cancer Institute with Anne Pera. This time she did a “Metamorphosis” on my feet, hands, skull and back. She has such a light healing touch that I can recommend her highly. She’s really present when she works on you and you can feel the healing energy in her hands.

My session with Leslie Davenport turned out to be quite magnificent! I spent about one half hour simply describing the state of my healing. I told her about the work with Anna Halprin, the Feldenkrais work, my contact with R. M. in New Zealand, and my “seeds of enlightenment,” which seemed to thrill her quite a bit. I talked about That’s Funny, You Don’t Look Buddhist, and some feelings about my family of origin and childhood experiences. I expressed how I felt rejected as a child by my family, school mates, the kids at Hebrew school and Sunday school, and by God. I explored these feelings without regret, but with a sense of longing. These feelings were overwhelmed by my new sense of love for myself and the work I am doing to heal.

In the guided imagery portion, Leslie began with these inspiring words:

“As we begin, just notice where you are as we start… where your attention seems to be clustered… And to engage with the knowledge that you have the freedom and the power to focus your awareness… And feel how each breath, each moment has never been lived before, has never been breathed before… acknowledging the newness… the presence of each part of the breath… each moment of the breath… And to begin to also sense that balance between your focusing of attention and the receptivity… the active, the receptive, of any guidance that may come through at any point… And staying a little longer with the breath and feel how the in breath carries strength into your body, clarity into you mind, stability into your emotions… connectedness to that deep sense of yourself… And how the out breath by its very nature has that cleansing, clearing, letting go qualities… And allowing yourself to begin to tune into your body with the fresh eyes and the fresh sensing that arise out of this moment… And to go ahead and allow your focus to go right into the place in your body most in need of healing… And just to allow images to form which may be familiar or new…”

I tuned into my bladder and had the same images as when I felt “healthy cells growing all by themselves.” Then I noticed a white spot in the area where the tumor was and decided to focus all of my attention on that area. My attention became so one-pointed that I began to feel waves of bliss which I again used to support the growth of healthy cells. When I expressed how I was doing, Leslie said, “Well, it’s actually two-pointed because I’m putting mine there too!”

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King of the Jungle of the Mind

March 10, 1997 – King of the Jungle of the Mind

This morning, I had to go back to Radiation Oncology department to have a dry run of my radiation treatments. This went rather smoothly, but I noticed that the waiting room was filled with older people! I thought, “I’m too young to have cancer!” This thought doesn’t seem to do me any good!

While I was waiting, I continued reading in Practical Intuition. One of the experiments was to open yourself to your sense impressions according to the instructions,

“To begin, simply start reporting what you’re sensing in the moment. If you hear a car beeping outside, say so. If your nose itches, say so (feel free to scratch it). If you’re hungry, say so. The trick is to report everything you notice-out loud. Don’t forget to report any thoughts, feelings, or memories that you become aware of.” – From Practical Intuition, by Laura Day, page 54.

 

I wrote down my impressions and then I was called in for the dry run. After that, I decided to take a walk along the beautiful stream that flows into the bay across from Marin General Hospital. I had chosen to walk at least two miles. As I walked, I noticed the birds, flowers and other plants, and especially Mount Tamalpais. Before I reached the mile mark to turn around, I noticed that I was behind 919 Sir Francis Drake, where I had my company in 1982. I decided to continue on to Willie’s Caffe and have breakfast, but I didn’t have any money. I only brought my car key, the stone from Anna Halprin, and the ammonite fossil that Barbara Rose Billings had given me. So I asked the manager if I could give her a credit card number. She said no, but would feed me anyway on an “IOU!” Well, I really enjoyed my pancakes, poached eggs, and bacon, with a large glass of fresh orange juice!

As I was leaving the restaurant, I spotted two angels across the street: J. D. and her friend, M. J. J. D. is the mother of my daughter’s best friend. I asked J. if she had some money, and her friend had $14.00 that she had discovered after she got out of the car. Normally, neither one of them would have money with them, but on this occasion, she had just the amount I needed! So I borrowed the money from M. and paid my bill. Not only that, but J. and M. were walking back to Marin General Hospital to get their car with their dogs, so I joined them and we enjoyed a marvelous hike back to the cars!

One of the plans for today was to prepare for the chemo and radiation therapy tomorrow. In accordance with this plan, Dr. Gullion had given me a list of suggestions. One of them corresponds to exactly what the Shipley protocol demands: patient hydration of 3 to 4 quarts of fluids. So that’s what I spent the afternoon doing!
Since it was Monday night, I went to Anna Halprin’s class. Again, it was absolutely healing. The themes for the night were deep breathing and choosing an animal to represent our condition or needs. The deep breathing was inspired by Andy Weil. For my animal, I chose a lion, an image I had had about a year ago. In fact, the wallpaper for my computer at work is a picture of a lion, and of all the animals at P. G.’s house, I was most attracted to the lions. We drew pictures of our animals and then danced the pictures. The picture I drew reminded me of a Sphinx. It looked like a self-portrait of a monkey-lion. The major theme was the courage I need to endure the next eight weeks, and the significance of the Sphinx was the guardian of the temple so that only those with a pure heart could enter. The spirit of the lion I chose was one of a contented cat who was rolled over on his back and relaxing.
The class ended with a healing circle. Anna placed me in the center so that I could receive the energy of the group for my treatments tomorrow. It was very powerful!

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Practical Intuition

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La Boheme

March 7, 1997 – La Boheme

Today I have a busy schedule. I see Dr. Gullion in the morning, meet with co-workers in the early afternoon, and travel to Capitola for my son’s performance in La Boheme in the evening. We have planned to spend the night in Capitola. I have prepared a list of questions for Dr. Gullion.

Once again, Dr. Gullion showed up with a heart pin on his shirt pocket. I believe that he is quite open to what Andy Weil calls integrative medicine. We spoke about all the issues on the list and the thing that struck me the most was his willingness to allow guided imagery and massage along with chemotherapy. He said that this is what they were trying to do at the Marin Cancer Institute.

As far as Keith Block is concerned, Dr. Gullion thought that with Michael Broffman and all that I was doing, it amounts to the same thing. He said that he had always had difficulty getting Dr. Block to be specific about what he is doing, and that he had proprietary supplement preparations that no one else had. I felt confident that I was on the right path because of Michael Broffman, Marty Rossman, Van Vu, Elyse, and the combination of all the other things I am doing.

As far as the chemotherapy is concerned, he was no more worried about my response than Dr. Shipley. He had given cisplatin and 5FU together before, but not combined with radiation and not in the doses that I will be getting.

After our visit with Dr.Gullion, we headed down to Network General and then to Santa Cruz. We checked in to the Apple Lane Inn and took a nap before meeting M. and G. for dinner in Capitola before the opera. M. seemed quite relaxed in spite of having one of the leading roles in the production. I was feeling quite proud of him and also felt excited to be able to be there. You may recall that on my first visit to Dr. Neuwirth’s office when he described my illness, I wanted to be able to see La Boheme.

La Bohem, SF Opera

The performance was rather good for the first performance of a new opera company. Of course my son had the best male performance as Marcello, Rudolpho’s friend! The woman who played Mussetta was also excellent. But the orchestra and chorus left something to be desired. All in all, it was very enjoyable and I recommend it to anyone living near Santa Cruz.

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More Resection?

February 13, 1997 – More Resection?

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.

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Back to Work

February 12, 1997 – Back to Work

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.

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Decision Day

February 11, 1997 – Decision Day

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.

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The Big Surprise!

February 6, 1997 – The Big Surprise!

The next morning, my wife and I had another helpful conversation with Sara Huang. Once again, she was emphasizing the possibility of saving my bladder, but we were predisposed to think about surgery.

Then came our consultation with Dr. Gullion who had the tumor board results from early in the morning. To our shock, amazement and surprise, the tumor board came to the decision that I could take my choice between radical cystectomy and the Shipley treatment! They felt that the entire visible tumor had been removed by Dr. Neuwirth and my chances were the same with either treatment. We were stunned! We had no idea that this would be the result of the tumor board! Now what was I going to do?

One thing was clear: I didn’t want abominable surgery! After speaking with Dr. Belknap about the results of the tumor board, I received a call from J. W., a close friend of mine from my enneagram centers group. She had gone through surgery and chemotherapy for ovarian cancer and was finally beginning to feel more like herself. I asked her what she thought of my two options, and she said that abdominal surgery was horrible. She would vote for the chemo and radiation. I liked her reasoning and knew that she was speaking personal experience.

Joan also gave me advice in the following areas. She suggested that I check with my insurance company to see if I was covered for a social worker to come in the house and help out when I was going through the worse part of chemotherapy. She also said the cisplatin was very hard on the kidneys and that I should allow for eight hours of rehydration. She prepared me for short-term memory loss during chemotherapy, and wanted to make sure that I had a cocktail of drugs. The typical Shipley treatment is to apply cisplatin with methyltrexate and vinblastine together, so I may not have to worry about this. However, she was careful to emphasize that I should carefully check what is being fed into me because there have been many cases of chemotherapy overdoses! She cautioned me to stay away from anti-nausea drugs and use sea-bands instead. She recommended getting a hold of the National Cancer Institute (1-800-4-CANCER) for specific information about the drugs I’ll be taking and how to best deal with the side effects. She recommended taking caraloe and aloe vera combination with vitamin E and suggested that I read, “The Chemotherapy Survival Guide.”

By the time I finished my conversation with Joan, I was on my way to my decision not to have radical cystectomy.

The Chemotherapy Survival Guide: Everything You Need to Know to Get Through Treatment

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