Appendix 3 Questions for Dr. Gullion

These questions are about chemotherapy.

  1. What do you think of the Shipley protocol?
  2. Have you treated anyone with cisplatin and 5FU together?
  3. What about in combination with radiation?
  4. Are these doses particularly high?
  5. What side effects should I expect?
  6. Will I have adequate time for rehydration?
  7. Will I be getting an antiemetic in the drip? My friend advised against using one. What do you think?
  8. What do you think about medical use of marijuana?
  9. How long can I expect to be here each day?
  10. Will I be able to eat lunch and/or dinner?
  11. Do you have any suggestions on what I should eat?
  12. Please explain the time table of treatment for the three days.
  13. Can I bring my computer or boom box to play tapes and CD’s?
  14. Should M. be with me the whole time?
  15. Can I have other visitors?
  16. Can I have Leslie Davenport come in to do a guided imagery session?
  17. What about a massage durnig this period?
  18. What suggestions do you have for being at home in terms of eating and sleeping?
  19. What else can you suggest that would make me more comfortable?
  20. Is there something about this treatment that you are unwilling to tell me?
  21. What do you think of the Wellness Community Physician/Patient Statement?
  22. What do you know about Keith Block’s regime and is it applicable to this situation?
  23. Do you have copies of Keith Block’s papers?

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

>>> Next…

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.

>>> Next…

No Magic Bullets

February 4, 1997 – No Magic Bullets!

The next morning, we shipped J. off with M. L. T. and headed for Dr. Roger Morrison, a world renowned homeopath. We explained the situation to Roger, and he was all for the bladder saving approach, especially because it provided an option to save the bladder, as well as a fallback position of bladder removal. However, we didn’t learn very much new from Roger, and this was rather disappointing. We were looking for a magic bullet, but none was to be found.

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In the afternoon, I saw the Russian healer, Nicholi Levaschov, in San Francisco. I loved the man at first sight, as I could see his healing qualities and felt good in his presence. However, I found it very difficult to understand his English, and therefore have not followed up with any further treatment, as yet. What he did was quite remarkable, though. He seemed to be able to stand over my body and evoke healing energy. He moved his hands in circles around the area of my bladder, and I felt the energy quite clearly. I sensed that he was working with colors and when I felt the color, yellow, I made a comment. He confirmed my sensitivity and continued the treatment. All in all, I was there for about thirty minutes and enjoyed the experience quite well.

My next appointment was with Suzanne Schmidt’s healer, Yokey Kim, at his studio, Kim’s Yoga Body Design in Japan Town in San Francisco. Kim is a Korean shiatsu and acupressure healer of top quality. I felt a lot of tension release from my shoulders and legs during the treatment, which lasted about one hour. The cost of the session was only forty dollars!

Although Roger, Nicholi, and Kim are all incredible natural healers, there were no magic bullets to be had! I was left to my own devices, such as “mind stories” and other spiritual practices.

Appendix 2 Questions for Dr. Carroll

Alternatives

1.) Radical cystectomy
a.) How many have you done?
b.) What is your success rate?
c.) Did any patients have chemotherapy? What is the difference between adjuvant chemotherapy and non-adjuvant chemotherapy?
d.) I know about depositing blood. How is this done?
e.) What are the pre-operative considerations? Legal? Financial? Medical?
f.) What do I do on the day of the operation?
g.) How long is the surgery? Will there be other physicians in the operating room? Would you also remove the gall stone and gall bladder?
h.) Tell us the details about the neobladder. How is it constructed? What are the dangers of breaking up the bowel?
i.) What complications could arise during construction of the neobladder?
j.) Tell us the detail about the removal of the urinary bladder. What are the dangers of carcinoma spillage into other parts of the body from the removal of the bladder?
k.) What complications can occur during cystectomy?
l.) How long do you expect I’d be in the recovery room? Will I need intensive care?
m.) How long is the hospital stay? Will I have to be moved to a nursing home?
n.) When I get home, will I be able to navigate steps fairly efficiently?
o.) How long will I be laid up?
p.) Will I be able to sit up and use the computer? Will I be able to compute from bed? Should I apply for long term disability from my company?
q.) What follow up treatment will be needed?
r.) What are the mechanics of using the neobladder?
s.) How long do you think it would take for me to return to a normal live?
t.) If all goes well, would I have a normal life expectancy?
u.) What about metastases? How would we monitor for them? Both of my parents and my son had substantial metastases. Why would I be any different?
v.) What else should I know about the surgery, hospital stay, recovery period, and long term prognosis?
2.) Shipley
a.) Would you be willing and able to manage and/or participate in the Shipley protocol with me? If not, who would you recommend? If so, who would you have on your team?
b.) What are the chances that I would need radical cystectomy after all the chemotherapy and radiation therapy?
3.) Watch and wait
a.) How long would I have to live?
b.) How frequently would I have to have cystoscopy to monitor the bladder?
c.) Would you be willing to take me on for this type of program? I’m looking for spontaneous healing, and I’d like to buy some time.
d.) How risky is this program?
4.) Would you be willing to take my case to the UC tumor board tomorrow?

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:

Should I Ship off to Shipley?

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

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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.

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.

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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.

Yellow Stream!

January 31, 1997 – Yellow Stream!

On the morning of January 31, 1997, I finally had what looked like a normal yellow stream! I was so excited that it made my day. Another great thing that happened that morning is that M. C. gave me a check for four therapeutic massages with Elyse, whom we’ve been seeing for over a year.

Around 11:00, R. M. called my to have lunch with J. M. J. was diagnosed with prostate cancer several years ago, but appears to be in remission now, with only natural medicine regimes. His PSA test is normal now, but he has had to work hard and be careful with his diet. Luckily, J. M. has the resources to fly all over the country to find the best alternative medical treatments.

J.’s original reaction to my situation was to recommend radical cystectomy. However, having the night before to look through his library of books on cancer, he had changed his mind by the time he picked me up to go to lunch. We discussed all the alternative healers that J. had visited, but much of his treatment didn’t apply to me, since prostate cancer is much slower growing. Overall, it was wonderful to have the support of someone who has had to deal with the same emotional issues when confronted with having cancer.

Later that afternoon, three members of my evolutionary circle visited me and they proceeded to perform a healing circle for my benefit. It was shortly after they left that I named this we site, “Yellow Stream!”

After they left, I had time to look at the papers that were sent over by Dr. Huang. One of these papers was delivered on my 55th birthday in 1995 and bore the name of William U. Shipley. I spent much of the rest of the afternoon tracking down other works by Shipley and his associates and ultimately finding the phone number of his son. I phoned Shipley’s son and pleaded my case to him. He agreed to notify his father and possibly have him call me.

Later that day, I phone Dr. Neuwirth to see if he knew of Dr. Shipley. He said, “Shipley – Oh yes, the bladder saving guru!” I was excited that this man was known even to a local Urologist! Just before we got off the phone, I asked Dr. Neuwirth if he had a copy of the completed pathology report that he could fax to me. He said that he did and he would.

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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