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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More Moving Towards Health

February 17, 1997 – More Moving Towards Health

This morning, I had a Feldenkrais lesson with Gail Teehan, a friend of my through D. B. It was preliminary lesson breathing and was followed by a short Functional Integration session. Both of these experiences were comforting and relaxing.

After taking R. to her friend’s house, I decided to try playing tennis and managed to play two sets without too much strain. It was wonderful to be out on the court again. One hardly realizes the value of activities one loves until it becomes inaccessible!

That night, I returned to Anna Halprin’s group at Marin General Hospital. It was another healing experience. The theme of the evening was water, and I immediately got an image of a waterfall I had seen in a photograph or movie. The water was flowing over the edge of a cliff in such a way that there was a substantial overhang, and one could walk through the waterfall and be protected from the water underneath the overhang. I drew a picture of this scene and wrote the following:

Here we have stupid Ninad –
He thinks that because he is empty of self that he is also empty of suffering and that suffering is empty of self!
Wait until next week!!
He’d rather be surfing (the web) rather than suffering.
He should learn to step on the rocks, stupid!

A little explanation is called for here. In the drawing; (which I shall try to scan someday), there is a picture of three stones that one would step on to walk into the waterfall. While I was drawing the rocks, I was reminded of the joke about Jesus, Buddha and Moses. They were walking across the Jordan River one day and Moses kept sinking deeper and deeper into the water, but Buddha and Jesus had no problem staying on the surface. When Jesus saw Moses sinking, he yelled back to him, “Step on the rocks, stupid!” The reference to my personal life was simple: I should “step on the rocks” of those who have gone before me with the treatment of bladder cancer. However, this is not my nature. I want to know what’s happening and have some control of my life.

The name, Ninad, was given to me by Bhagwan Shree Rajneesh in 1975 – before he was famous. He explained to me that “Ninad” means the sound of the waterfall!

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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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I Don’t Want Abominable Surgery!

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.

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Pissing Contest

February 5, 1997 – Pissing Contest

M. L. T. picked up J. so that we could meet with Dr. Peter Carroll, the Oncological Urologist that everyone said was the best in the Bay Area. L. C. met us at the U. C. Medical Center in his office. After a brief case history and yet another prostate exam, Dr. Carroll once again explained the standard of treatment for bladder cancer: radical cystectomy. We were encouraged by his some two hundred bladder removals and eighty urinary diversion operations. We felt that this was the man to do any cutting, if any was to be done. We asked him all the questions in Appendix 3. We left there feeling confident that Dr. Carroll could handle any surgery that I might need.

Later that afternoon, I saw my therapist, Suzanne Schmidt for the first time since November. She was going through some radical changes in healing herself, which included almost daily visits to Yokey Kim. We started a new therapy involving self-massage of the chakras (seven energy points within the body described by Indian yogis) and the mental and emotional pain associated with them. We were quite in synch during the whole session, which lasted over two hours. We seemed to be healing each other, but I still did not get a clear idea of how to treat my bladder cancer. I left her house feeling very good!

Suzanne had recommended that I try to see Kim every day, if possible, so when I got home I called him. He said that I could come in at 6:00 P. M., which I did. The second treatment was better than the first, in that I was more relaxed and knew what to expect.

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Oncological Consult

February 3, 1997 – Oncological Consult

Finally, one of my girls was recovered from the horrible virus that has struck our community, but we still had the other one at home. Having the girls around makes strategic conversations a little difficult. However, we were scheduled into Dr. Gullion this morning and I got T. W. from my conscious evolution group to stay with J. J. and L. once again consented to be present at the consultation with us.

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We sat down with Dr. Gullion and he was wearing a pin shaped like a heart over his pocket. He was tall and had a very welcoming smile. However, due to the seriousness of my illness, he was a bit serious himself. He sent the others out of the room for a few minutes while he examined me.

When the others returned to the room, he asked me what was wrong (as if he didn’t know) and I explained that I had a stage four bladder cancer that was highly active along with carcinoma in situ and some dysplasia and atypia cells. He was impressed with my understanding, and proceeded to write out my diagnosis and treatment alternatives “Patient Communication Sheet.”

You have: Papillary transitional cell carcinoma, Grade IV/IV T2 (T3a), N0, M0

Treatment:

  1. Radical Cystectomy – standard therapy
  2. Neoadjuvant therapy – Bladder sparing

Chemotherapy – MCV x 2 cycles followed by radiation: 4000 rads with cisplatin (2 cycles). Then re-evaluate with cystoscopy and biopsy. If (-) – radiation – close follow-up. If (+) – surgery.

While this was slightly different than the Shipley protocol as I understood it, I could see that he had done his homework after speaking with Dr. Rossman.

We continued to ask questions (see Appendix 2, available on request), and left with the feeling that radical cystectomy was the way to go. We discussed both options with J. and L. over lunch. During that time, I decided to go to their house with them in order to use their Jacuzzi bathtub. As we passed the tennis courts, I was filled with grief, as I surely would rather be playing tennis. That night I was starting to come down with a cold, which my wife treated homeopathically.


This is a good day to take just a minute and go see the amazing trailer to The Truth About Cancer – A Global Quest… it will blow your mind:

Treatment Options: Radiological Consult

January 30, 1997 – Radiological Consult

The next day we met with Dr. Torigoe. This time we took J and L with us. They have been friends for the whole time my wife and I have been together, and they have and extremely rational outlook on life. Naturally, we would have liked to take Dr. Rossman too, but he has his practice and we didn’t want to bother him.

We had a very long discussion with Dr. Torigoe. His patience and understanding were remarkable. He, too, thought that the “Gold Standard” for treatment of bladder cancer is radical cystectomy. But, as he put it, “Radiation and chemotherapy are a viable alternative, especially if the radical cystectomy is too morbid for some people.”

When I explained what transpired in our conversation with Dr. Torigoe to Dr. Rossman, he recommended that I contact Dr. Dave Gullion, who he was planning to see the next day at Commonweal. Dr. Gullion is a medical oncologist in the same building as Dr. Torigoe and he is also associated with Marin General Hospital.

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Radical Is As Radical Does!

January 29, 1997 – Radical Is As Radical Does!

Around noon on this day, I received a phone call from Dr. Neuwirth. He wanted to see me in his office at 5:00 P. M. that afternoon. He also told me that I had a bladder cancer and that he needed to explain to me all of my options.

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Instead of panicking, I immediately started a search on the World Wide Web for “bladder cancer.” I found many references and lots of good sites. I printed off several of them to take with me to Dr. Neuwirth’s office. These included Bladder Cancer, Understanding Bladder Cancer, MedicineNet’s Bladder Cancer, and About Bard BTA Test. Of these, the first turned out to be the most useful because of the way it talks about treatment by stage of bladder cancer.

We brought R. D., the father of a childhood friend of my wife, and Dr. Rossman to the meeting with Dr. Neuwirth to help us remember the conversation and all that we said. It is always a good idea to take people you trust so that they can bear witness to your conversation and possibly hear things that you can’t because of your emotional involvement with the case.

Dr. Neuwirth started to explain the “stage” and “grade” of the tumor based on a preliminary verbal report from the pathologist. Once he said “T2,” I dropped the Bladder Cancer paper pointing to the section on T2-4 tumors. His jaw practically fell to his desk! He said, “I wouldn’t put it that bluntly, but that’s basically what we have here!” He also mentioned that I had some carcinoma in situ and a bit of dysplasia, which are abnormal cells. Later, we found out that I also had some atypia cells from Dr. Torigoe (see below).

He proceeded to explain the ins and outs of the medical alternatives for treatment of stage two bladder cancer. The choices were basically

  1. Cystectomy – partial or radical
  2. Radiation
  3. Chemotherapy

Dr. Neuwirth, being a surgeon, naturally recommended radical cystectomy. We asked him all of the questions in Appendix 1.

My son was born on January 29, 1969. Today he was 28 years old. It’s funny how life is. I had to give him the bad news on his birthday. On March 7, 9, 14, and 16 he was scheduled to have a leading role in La Boheme, as Marcello. I wanted to see him perform and didn’t want any disabling therapy to begin before I had a chance to see him.

That night, we spoke with Dr. Sara Huang, a radiation oncologist at St. Mary’s Hospital in San Francisco. She has long been a friend of the family and was devastated by the news. She mentioned that the “Gold Standard” of treatment for bladder cancer was radical cystectomy. However, she had some hopeful information about the possibility of chemotherapy used in conjunction with radiation therapy and recommend that we consult Dr. Wayne Torigoe at Marin General.