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.
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.
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.
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
- Radical Cystectomy – standard therapy
- 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:
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.
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.
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 protÃ©gÃ©. 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.
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.
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.
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.
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
- Cystectomy – partial or radical
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.
January 28, 1997 – Going Home!
I was awakened the next morning at around 6:00 A. M. by … guess who? A nurse of course who wanted my vital signs and other data. The catheter was supposed to be removed by 7:00 A. M., but the nurses decided to wait until Dr. Neuwirth showed up and voiced his opinion.
I was visited in rapid succession by Dr. Belknap and Dr. Neuwirth. The latter found the nurses’ objection to removing the catheter rather lame and ten minutes later it was gone. I asked him, “On a scale of one to ten, how do you rate the surgery?” His reply, as he got up to leave, was, “Ten, of course! I always do ten!”
There wasn’t much else he could tell me until the biopsy was completed and the pathology report issued. Apparently, he was able to remove all of the tumor that was visible above the muscle layer of the bladder and he also removed additional samples around the tumor and at remote sites.
A few hours later, I was on my way home! What a shock! Four days earlier I was playing tennis. Now I was laid up for approximately three to four weeks, and I was still pissing blood. What else lay in store for me?
Fortunately, there were a large number of well-wishers calling, sending cards, and stopping by. When I arrived home, there was a gorgeous bouquet waiting for me on the porch. It turned out to be from the RND group at NGC! I was really touched by their efforts and concern.
That night, I suffered tremendously from the pain of the epidural. However, one call to Christophe gave me the information I needed to relieve the pain. He suggested three Motrin along with the vicodin.
January 27, 1997 – First Hospital Stay, Continued
My refusal to sign the operation afforded me another whole day of waiting. In the morning, I had visits from Dr. Belknap and Dr. Neuwirth, both of which were very helpful in pointing out the pros and cons of the alternative anesthetic methods, but I still hadn’t made up my mind. I wanted to speak with an expert.
Dr. Neuwirth tried to prepare me for the best case scenario, which would involve complete resection of the bladder tumor followed by quarterly inspections with a cystoscopy and possibly coupled with chemotherapy agents inserted directly in the bladder. I found this discussion rather informative, but would have preferred a more accurate reading of my tumor.
Since my daughter was ill, my wife couldn’t be with me the whole time, so I spent the day receiving phone calls and visitors, and listening to classical music, and Dr. Rossman’s tape. Since I couldn’t eat or drink, my thoughts continually turned to food, especially when my roommate ate his meals. In between time, I continued my meditation and visualization practices, which kept me from getting to anxious about the ensuing operation.
At around 3:00 P. M., my wife returned to the hospital, just in time for the meeting with the anesthesiologist. His name was Christophe Dannello and he was very nice. He carefully explained the various options, and with his guidance, I decided to go with the epidural.
Around 6:30 P.M., they came to wheel me off to surgery. I grabbed Dr. Rossman’s tape and headed off to the operating room. I was given a sedative intravenously and placed on the table. A moment later, a small needle was applied to my lower back and I was turned over and placed into position. The oxygen feeder was placed in my nose and my legs were positioned in place for the surgery.
Then… I was gone! I woke up in the recovery room and spent what seemed like only fifteen minutes there. I was taken back to my room and my wife was with me for the next half-hour or so. Then she had to get home to the children, so there I was, lying flat on my back with a catheter in me. I started to feel pain from the epidural and was given “candy” – vicodin. This controlled the pain.
I proceeded to do my “mind story” and had a fairly good night sleep until I was rudely awakened for vital signs around midnight. Luckily, the rest of the night was uneventful, even though I was leaking blood through my catheter.
January 26, 1997 – Superbowl Sunday!
I woke up around 8:30 in the morning and called Dr. Belknap. I got his answering service and called the physician on duty, Dr. Jacoby. He set me up for an appointment at 10:45 on a Sunday morning! I then proceeded to phone Dr. Belknap at home, and he assured me that seeing Dr. Jacoby was the right thing to do.
After taking a urine sample, which, by the way, looked more like a blood sample, Dr. Jacoby examined my prostate gland and left the examination room to call the urologist on call at Marin General Hospital (the other MGH!) who happened to be Dr. Neuwirth. Dr. Jacoby strongly recommended that I head off to the hospital so that Dr. Neuwirth could run some tests to see what was causing all this blood.
We arrived at the emergency room of MGH at around 11:30, armed with a bag containing the urine sample, in perfect time to meet Dr. Neuwirth. Can you imagine not having to wait four hours in the waiting room! He walked away with the bag and returned in less the 10 seconds. “I want to admit you and do some tests,” he said.
After that, in short fashion, I found myself in a typical hospital gown, lying in bed with an IV started in my left wrist. In less than an hour I had X-rays, a CT scan, and an intravenous pyelogram, or IVP, which is an x-ray evaluation of the urinary tract. All of these tests were expected due to the excellent coverage of the hematuria web page.
The results were not favorable. From the CT scan, it was obvious that I had some kind of tumor at the base of the bladder and therefore a cystoscopy was necessary. This was to be scheduled as soon as possible, but actually would never take place on Super bowl Sunday! What medical team would be willing to give up their Sunday evening, anyway?
So there I was, back in my bed, just in time to watch the Super bowl. By then, the phone was ringing off of the hook, and my friend, Dr. Rossman came to visit me to look into my condition. He is an outstanding physician in his own right and specializes in interactive guided imagery, and acupuncture. He brought with him a new guided imagery tape for pre-operative patients in which he collaborated with Stephen Halprin. I also had a few other visitors, including my sister and her husband, my son, and another good friend. I think the gentleman I was sharing the room with was getting fed up with all of the phone calls. I knew I had a tremendous support group behind me. This, by the way, is one of the important factors in helping yourself to a speedy recovery – having a support group of people who love you unconditionally.
After everyone left, I settled down and listened to Dr. Rossman’s tape. This helped me to relax and visualize some long range goals, such as playing tennis four days a week once again. With meditation and visualization techniques, I was able to sleep most of the night, barring interruptions from nurses who wanted to suck more of my blood.
One interesting thing that happened that night was that one of the nurses wanted me to sign my operation consent from. After reading it over, I decided that I needed to speak with an anesthesiologist first, in order to determine whether I should go with a general anesthetic or an epidural. The nurse said that he would get one up to my room, but one never came. The next nurse on duty also tried to get me to sign, but I still refused. It took them until 3:00 P. M. the next day for one to come, and I missed an opportunity for a 9:00 A. M. surgery.