The morning in the hospital was fairly uneventful. I continued to read and listen to tapes until Dr. Neuwirth showed up. When he did, he explained that he took more tissue out of the bladder wall and left me with a very thin membrane. To help the healing, he wanted me to keep the catheter in until Tuesday. However, he didn’t seem to find any more gross cancer during the TURBT. Although the catheter is rather uncomfortable, I was very excited that there was no more visible tumor in my bladder! He was even telling me to “fatten up” for the chemotherapy that was going to happen in three weeks. I got the impression that he was satisfied with my decision to go with the Shipley method.
I spent the afternoon completing the “mind story” on the practice pages and submitting my URL to the various search engines. Somehow, time seems to flow so much faster now. My guess is that once you are confronted with a life-threatening illness, you value each minute a lot more. For example, when I played tennis on Monday, I thought it was very precious time, as I don’t know when the next time I’ll be able to play. Another example: Mala’s cooking today seemed to be extra special.
I went into the hospital early this morning to have another TURBT procedure done by Dr. Neuwirth. I was taken into the operating room about 75 minutes early, along with Dr. Rossman’s pre surgery tape! This time, I was not given the opportunity to have an epidural. Instead, I had a general anesthetic. Luckily, I did not experience any side effects from the anesthetic.
My recovery was a little uncomfortable this time, probably because of the catheter, but maybe from the anesthetic. I was rolled up into my room about noon time and immediately started drinking. I wanted to flush out the disease from my bladder as soon as possible. In between visitors, I spent the afternoon comfortably doing “mind stories“, listening to tapes by Dr. Keith Block and Dr. Carl Simonton, and reading Love, Medicine and Miracles. Later that evening, E. M. and D. F., two of my favorite tennis partners, came by. It was so nice to speak with them about how I use tennis as a spiritual practice and introduces them to visualization and guided imagery.
My wife is very clever! She talked Dr. Neuwirth into letting me spend the night in the hospital, which is not normally done after a TURBT. I was grateful for the overnight stay because I don’t have to deal with a catheter until Tuesday.
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.
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 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.
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.
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.
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.
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.
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.
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.