This evening, we went to Thich Nhat Hanh‘s lecture at the Berkeley Community Theater along with 3500 people attending the lecture.Ã‚Â It was fortunate that I planned to attend this lecture because not all of the news I got today was good.
Dr. Gullion had the results of the cystoscopy and the needle biopsy earlier in the day.Ã‚Â While Dr. Neuwirth saw no visible signs of cancer, the wash of my bladder revealed atypia cells and other carcinoma cells, which could indicate that there is some microscopic cancer in my bladder.Ã‚Â However, Dr. Halberg and Dr. Huang both assured me that these cells could be a result of the radiation.Ã‚Â As a result, I have to go in for a biopsy under anesthesia on October 3 to have my bladder checked out.
The results of the needle biopsy of my left thigh were inconclusive.Ã‚Â The preliminary indication is that I have a schwannoma, which has to be surgically removed in order to accurately identify it.Ã‚Â This means another set of doctors at UCSF, and perhaps a three night stay in the hospital there.Ã‚Â I have to be able to walk on my leg before they’ll let me out of the hospital.
I had an opportunity to talk all of this over with Leslie Davenport after seeing Dr. Gullilon.Ã‚Â She was very helpful, but I had already seen that although these procedures are complicated and time consuming, neither one of them are extremely dangerous.
February 14, 1997 – Happy Anniversary!
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.
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.
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.
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.
February 2, 1997 – Should I Ship off to Shipley?
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.