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Jewish Penicillin

March 11, 1997 – Jewish Penicillin

We arrived at the Marin Oncology center at 8:10. Here it is now 9:03 and we’ve just been sitting around. Naturally, they had us down for 9:00, not 8:00. So now I’m really getting restless. I’m not comfortable starting a mind story, not knowing how far I’ll get or if I’ll be able to even begin. I tried working on Practical Intuition, but the same considerations play. The man next to me is getting his i. v. already. I guess that he’s been here before.

Last night was fairly difficult. I seemed to sleep fairly well in stages, but due to all of the hydration, I was up many times. Finally, at 3:00, I went downstairs and did a little writing. Next came a tape, and by the time it was time to wake up, I was ready to sleep.

I haven’t been that preoccupied with today’s treatment plan, but I still felt unable to concentrate on my breath. No one can tell what kind of response I’m going to have to the chemo, and I’m a little worried. To top it off, I have two rounds of radiation also today.

I had expected to be able to listen to guided imagery tapes, but with all the commotion going around here, I preferred to listen to the classical CD’s I brought. The Beethoven Choral Fantasy brought on a lot of emotion. I also listened to Dvorak’s Piano Quintet and Shubert’s Trout Quintet. These pieces of music are so calming and beautiful. I use my computer as my portable CD player.

Once the 5FU and cisplatin where into my blood stream, I felt a few minor discomforts, but all in all, it wasn’t too bad – just like Shipley predicted. I can probably have a decent afternoon. As soon as the cisplatin was finished, I got an urge for matzoth ball soup from Max’s! When I was growing up, this was called, “Jewish penicillin!”

I started having pains in my stomach and needed to pee again! The pains didn’t last long and I continued to pee frequently. At around 1:15 P. M., an hour and a half after the cisplatin was totally in, I went down for my first radiation treatment. Although I was a little nervous, I came through it OK. Within the next half-hour, we were back upstairs, getting the i. v. out and on our way home. Although I felt very tired, there were no other side effects. I was advised to take a sedative tonight to get some sleep, but now that the unknown is known, will I need it?

The second radiation treatment went really well. I was able to be relaxed and visualize the radiation helping the cancer cells to mutate back to healthy cells normal cells, or, if they choose, to self-destruct. This seemed to be really effective. The radiologist placed tattoos for the spots for focusing the beam and then explained the computerized care that I was getting.

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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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The Papilla Tree in the Forest

February 28, 1997 – The Papilla Tree in the Forest

Early this morning, I received a call back from Dr. Shipley, and I asked him about the side effects of the chemotherapy and radiation. He said that I should have a positive attitude and perhaps I’d feel a little tired, but I shouldn’t worry! I guess he knows! This set me up for a fine day!

I next attended Leslie Davenports cancer group at Marin General Hospital. During the guided imagery, I was taken by two images that were very healing. The first was an emotionally open heart that reminded me of Ram Dass’ song:

Listen, listen, listen to my heart’s song…
I will never forget you, I will never forsake you.
Listen, listen, listen to my heart’s song…
I will never forget you, I will never forsake you.

The second image was even more powerful. There I was, sitting under the papilla tree with Siddhartha Gautama, and I realized that he was sitting there for me. It was now up to me to sit under the tree for those that follow me. It was a powerful image that connected me directly to the Buddha and his teachings of emptiness and the path with a heart. On completion of the guided imagery, I drew a picture, on which I wrote,

The Buddha sat under the papaya tree for me…
I must sit under it for those that follow me.

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Cancerport

February 27, 1997 – Cancerport

Cancer Port is a support group that meets on Thursdays from 11:30 A. M. until 1:00 P. M. in Greenbrae. The purpose of the group is the emotional support of its members, which varies from time to time. On this particular occasion, there were approximately twenty-five men and women with various types of cancer, including several support people and three group facilitators. There were no other people with bladder cancer in the group.

When it became my turn to talk, I explained how I was diagnosed and what sort of treatment I was about to undergo. I talked about my fears of still having cancer eight weeks after the start of chemotherapy. Seeing what other people suffered with made me feel compassionate for their situations and increased my desire to share the research I had been doing since my diagnosis.

I left the meeting with two important things to do based on what people said. One of them was to contact Dr. Shipley to find out what the side effects of the cisplatin and 5-FU were, and how to counteract them. The other was to make an appointment with Dr. Van Vu for next Sunday. I felt under a lot of stress until these could be accomplished. Instead of breathing into the experience of tension, I drove home, had lunch and only after I made the phone calls did I feel any better.

Later in the afternoon I had an appointment with Dr. Barbara Rose Billings, a special healer who provides “Integration Therapy” which is a “multi-faceted and individualized to help give you what you need to unleash the healing power within you. Its strength lies in its ability to produce profound results by integrating your essence into the healing process.” I had an extremely healing experience with her, in recognizing what I want to do, tuning into my “belly breath”, and being recognized for my own healing abilities.

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A Day of Work

February 25, 1997 – A Day of Work

This morning, I resolved to fix some of the bugs that had been assigned to me. In doing so, there is often enough time to surf the web while programs are being compiled. During one such compile, I started looking for information on Dr. Stephen Sallan. He appeared on the ABC news cast last night to report on some remarkable achievements in the cure of cancer. I was really impressed with what he had to say, so I found his email address and fired off a message. The content of the message was as follows:

Dear Dr. Sallan:

I watched your presentation on ABC last night and I was really impressed. I was wondering if you wouldn’t mind answering a few questions. I’ll be happy to phone you if that is easier and if you provide your office number.

1. Could you please tell me the name of the agents you are using to achieve a cure? I was not able to write them down fast enough. I do remember that you use something that prevents cancer cells from constructing new blood vessels. Someone mentioned endostatin, but I thought it was after you spoke.
2. Have you done any tests with T2N0M0 bladder cancer? I have been diagnosed with such and plan to have Dr. Shipley’s protocol beginning on March 10. I’ve had two TURBTs. My guess is that you know his protocol very well. If not, I’ll be happy to send it to you, or you can find it on my website (see below).
3. Does your research have anything to do with concentrated Aloe Vera or Cesium Chloride? I have heard that these naturally occurring substances have great immune building properties. Do you know anything about them?
4. Are there any trials for bladder cancer using your methods that you know of?

Thank you very much for your attention. If you have a chance, please see my web site: http://yellowstream.org. Dr. Shipley’s protocol is available there.

I have found an interesting quote in Cancer as a Turning Point on page 95 that provides excellent support for my decision:

In contemplating the removal of an organ or organs, remember that Nature does not indulge in luxuries. As Galen wrote: “Nature does nothing in vain.” If it is there, there is a good reason for it. No substitute is going to be as good (Mother Nature knows best). An organ should be removed if the alternative at this time is completely unacceptable. You can always have it removed later. You can’t have it put back.

Other topics of interest from LeShan’s book are how to survive in the hospital and how to deal with despair. He also establishes four axioms for holistic health, which I quote:

  1. The person exists on many levels, all of which are equally real and important. Physical, psychological, and spiritual levels are one valid way of describing the person, and none of these can be “reduced” to any of the other. To move successfully towards health, all must be treated. All must be taken care of and gardened if health is to be maintained.
  2. Each person is unique. A valid program of treatment, whether it focuses primarily on nutrition, meditation, chemotherapy, or exercise must be individualized for each person. A standardized approach to a condition is not valid under this concept.
  3. The patient should be part of the decision making team. Each person in a program of holistic health is given as much knowledge and authority as he or she will accept.
  4. The person has self-healing abilities. Following the first three axioms helps to mobilize these abilities and bring them to the aid of the mainline medical program

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Treatment Delayed!

February 18, 1997 – Treatment Delayed!

Mala and I went to visit Dr. Halberg again today for a simulation run through of the radiation therapy that was supposed to have begun on February 25. However, Dr. Halberg had spoken with Dr. Shipley and was told that the chemotherapy and radiation treatments shouldn’t begin until three weeks after the TURBT. So, I’m off the hook for three more weeks! I wasn’t terribly surprised, because the protocol, itself says that registration begins three to four weeks post TURBT.

Dr. Halberg also reported that I had a urinary tract infection, and I was put on Cipro for the next two weeks.

Next, we went to Marin General Hospital to register for the TURBT tomorrow. While this was time consuming, it was not particularly unpleasant.

I spent most of the rest of the day preparing my legal documents, including a Durable Power of Attorney for Health Care, which is a good document to have for your own protection.

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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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Should I Ship off to Shipley?

February 2, 1997 – Should I Ship off to Shipley?

sailboat-459794_1920

The next morning, I had a very interesting conversation with Dr. Huang about Shipley. She was quite impressed that I not only tracked Shipley down, but that I actually spoke with him. I had faxed a copy of the pathology report the day before. She had always been a proponent of the Shipley method in my case, but now, armed with the pathology report, she was even more confident. She even recommended that I make the trip to Boston to consult with Shipley and his team.

Later that morning, Dr. Rossman came by with John Boik’s book. We spoke a bit about the options, be Dr. Rossman has a habit of throwing decisions back on people, with expressions such as, “What do you think?”

That day was filled with many visitors and phone calls. One phone call that I made was to P. F. We had been to her birthday party on the night the “Red River” started to flow, and I know that P. was involved with a Russian healer. During the conversation, she gave me Nicholi’s phone number and I set up and appointment with him for the next Tuesday. More about this man later.

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Shipley: The Bladder Saving Guru

February 1, 1997: Shipley: The Bladder Saving Guru

Early Saturday morning, I received a phone call from Dr. Shipley, which we almost missed!!! However, since I already had his office number, I called back immediately, and the nurse relayed the message to him, for he called back a few minutes later.

phone-booth-758924_1280

The conversation revolved around likely candidates for the Shipley approach, which combines chemotherapy and radiation therapy in an effort to save the bladder. He explained how his protocol involved four weeks of chemotherapy combined with radiation, followed by four weeks off. At the end of the second four week period, a cystoscopy is performed to look for the presence of tumors. If tumors are found, the radical cystectomy is recommended. If none are found, another four weeks of chemotherapy and radiation are applied and the bladder is followed up with cystoscopy examinations every three to four months. Subsequent local superficial growths are handled with intravesical chemotherapy using BCG or mitomycin, in which the chemotherapeutic agents are instilled directly in the bladder.

Dr. Shipley discussed how they like to work with patients who have had all the tumor removed with TURBT, as his success rate increases when this is the case. As I wasn’t sure if Dr. Neuwirth had resected all of the tumor, my hopes were a bit dimmed. He even mentioned that they sometimes use cystoscopy and transurethral resection two or three times to make sure they got all of the tumor.

This conversation gave me some hope. He even stated that I could come to Boston for a consultation with himself, along with Dr. Kaufman and Dr. Heney. Shipley referred to Marin General Hospital as, “The other ‘MGH’!” and mentioned the names of Dr. Francine Halberg and Dr. Patrick Bennett. Dr. Bennett had trained with Dr. Shipley and his team of oncologists and urologists and Shipley regards him as his protégé. So the next obvious thing was to speak with Dr. Bennett.

I had originally phoned Dr. Bennett when he was on call just after my surgery to ask him what to do about my back pain. He was quite helpful then, and during the conversation I had with him after speaking with Shipley he was also very nice and understanding. He told me what I already knew about the Shipley approach in that it worked best with all of the cancer resected, but that he would have to discuss my case with Dr. Neuwirth.

This was the day of many visitors and phone calls from well-wishers. For example, J. D. brought us dinner from Kitty’s place and brought me a copy of Andy Weil’s book, Spontaneous Healing, which I have been reading ever since. Late in the evening, Dr. Rossman phoned me to tell me that he had spoken with Dr. Gullion, Dr. Keith Block (from Evanston, IL), and John Boik, author of an excellent book on cancer research and alternatives.