Another Visit to the Doctor!

Again, in preparation for the surgery next Friday, I had to have another physical at Dr. Belknap’s office.  Fortunately, the blood work and the CT scan indicated no mets (metastases)!  Thank Buddha for that!

By the way, all through these adventures since returning from Santa Barbara, I have been having wonderful sessions with Leslie Davenport and Gail Teehan.  I haven’t reported much about them because they have had only a positive influence on my recovery.  I have also been playing tennis, as usual.

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The Day Before

I got a massage from Elyse this morning. It was the best massage I ever had from her in probably two years of seeing her. Today, I seemed more relaxed and she was more able to penetrate my tissues. In addition, she has very healing hands and really cares about me. She spent a lot of time massaging my belly and bladder, and remarked how easy and free I was. It was a terrific experience!

Cancerport was once again very supportive to my surgery tomorrow. They were very encouraged by my report from Dr. Belknap, and excited by Julie Motz. Unfortunately, two of our members passed away this week. One of them was the lady I visited last month. Another member is having his last few days. I wonder where I stand in all of this.

In the evening, Julie Motz spoke at Marin General Hospital. After telling her story about how she became an energy healer, she spoke about the heart. She said that in Chinese medicine, the heart is the governor of the body, and that the seeds of emotion lie in different organs. She also said that anger is the energy of the heart. She talked about the pericardium, the protective tissue around the heart, as the location of the seat of love.

She gave her ideas about surgery, which essentially is that early trauma needs to be worked out through surgery. She also restated her proposition that cancer begins in the womb as immature, incomplete, fetal cells which stop growing and that wait around for an opportunity to grow out of control. In breast cancer, patients usually feel that their mother was burdened or embittered by the experience of mothering and this had an effect for the patient. Mothers were ambivalent or under a lot of stress during pregnancy.

She led us on a guided imagery experience through each chamber of the heart. The left aortic valve represents fear. The left ventricle valve represent anger, and is the origin of the heart beat. The right aortic valve puts us in touch with pain, and the right ventricle is the origin of love.

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A Much Better Day

I’m having a much better day today, thanks to a decent amount of sleep (perhaps!) I worked in the morning before my appointment with Leslie Davenport. In the session, we did a guided imagery experience of what was happening in my life at the present moment. The threat of the pathologist finding cancer in my bladder was still the primary focus of my attention. Leslie, in her wisdom, asked me if there was a way that I could turn out good even if the results were not what I wanted. Although I am still wrestling with this concept, I feel more confident in my ability to use my mindfulness to stay focused on all the good work I have done until now.

Next, I had to register for my surgery of Friday and make sure that everything was OK for Julie Motz. I didn’t even have to wait, so I guess everything will flow smoothly on Friday.

Following my registration, I waited around for a neck and shoulder massage with Anna Pera at the Radiation Oncology Unit. It really felt great and came at a perfect time. I really allowed myself to relax into it and thus I got a lot of benefit from it.

In late afternoon, I had a complete physical with Dr. Belknap. The blood work was very normal and the rest of my health is surprisingly good! Dr. Belknap said with the blood tests and physical exam combined, he gave me an 80 to 90 percent chance of being free of cancer in my bladder! This information helped me to relax slightly.

At night, my wife and I went to the Center for Attitudinal Healing. Some people have been coming to the group for years, against which my three week barely measures up. However, I found it quite beneficial to speak once again about the dilemma I have with the outcome of my surgery on Friday. I am trying to hold either outcome as a part of my healing process, but I really, really prefer to be free of cancer now! I spoke a lot about my daughters reaction to my illness and how they were such wonderful children. “We don’t need a support group!” is what they always say! Their love and support is really helpful, even though I’m not quite sure that they know the worst case scenario.

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Your Average American Day

This morning I went in for my blood work for Dr. Belknap. In addition, I had blood taken for a nutritional analysis of my blood recommended by Dr. Rossman.

Later, I went to Leslie Davenport‘s group at Marin General Hospital. Leslie did a guided imagery which evoked the four elements. She began with the earth element by having us imaging our feet grounded to the earth even through our socks, shoes, the floor of the room, and on down through the building. She continued with the water, air, and fire, building on the images we had already constructed. Upon completion of the guided imagery, we drew a picture to represent our experience. My drawing incorporated all of the elements focusing on the room in which we were meeting. The building in which the room was looked more like a safe than a building, and I remarked that we were trying to create a “safe” space with our group. Everyone laughed! The group was also quite excited about Julie Motz!

When I got home, I needed to rest, as I was expecting a visit from my ex-wife. She is visiting our son from Israel and wanted to visit me. She arrived one hour late in a broken down car and was more or less forced to spend the night! She even invited me to go to Yosemite with my son and her!

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Don Alejandro

This week and next week will determine the future course of my treatment. The Shipley protocol calls for another TUR around May 6, to determine if there is any cancer in my bladder. The question for Dr. Neuwirth is, “Is my bladder free of cancer?” If the answer is no, then I am to proceed with more chemotherapy and radiation. This phase is known as “consolidation CFI,” where CFI stands for cis-platin, 5FU, and irradiation. If the answer is not no, then Dr. Neuwirth will probably recommend “radical cystectomy,” which I want to avoid.

To help me cope with such a decision, I went to see a Peruvian shaman by the name of Don Alejandro this morning. The session took place in Sebastopol, about 50 miles north of Sausalito. I had in interpreter who translated Don Alejandro’s Spanish into English for me on the fly – as he was speaking. This was a little confusing at first, but I eventually got used to it. I asked him the question on the list in appendix 4.

In the session, Don Alejandro told me that my disease was hereditary. Then I explained to him how my sister died of Leukemia, my mother of an osteosarcoma, my dad of bladder cancer, and how my son survived kidney cancer. Don Alejandro recommended that I continue with the chemotherapy and radiation, if that was required. He felt for sure that I would be cured of cancer, but that it may be a slow process. He said that there would probably be more than one looking into my bladder for cancer. He gave me advice on what to eat: no cold drinks, no red meat, fish in small quantities, and no sea food (my favorite). I should eat steamed or raw vegetables to make up the calories that I need to take in. Cold drinks cause the digestive system to clam up and can cause inflammation in the bladder. I don’t quite understand this, but maybe Michael Broffman can explain it to me. He suggested I take cat’s claw, which I already knew about. I’ll also check this out with Michael Broffman.

He said that I should maintain peace of mind and let all of my problems go. He asked me if I followed any religion, and I naturally told him that I followed Buddhism. He didn’t make a comment about this, but I’m sure it figured into the psychic equation.

Prior to doing his psychic healing, Don Alejandro had me drink a herbal beverage that was quite bitter. I was expecting apple juice! Then I laid down on the bed and he proceeded to heal me according to his methods. He first explored my bladder with his hands and then began a chant in a strange language that could have been mistaken for Hebrew. The chant lasted about five minutes and was very soothing. I noticed that he was sitting with his hands in the prayer position while chanting.

The next thing I knew was that he was laying his hands on my bladder area. After a while, I got the idea to open psychically to him, and I felt him penetrate my defenses. I found myself smiling during the process, and furthermore, I maintained a focus on my breathing with “healthy… free…” Some of his manipulations of my bladder area began to hurt, and I tightened up a bit. Then I realized that this was part of the healing process and I relaxed into it. His work proceeded without further hindrance from me, and soon it was over. He pronounced the healing complete, and, at the same time, ended the session.

I left Sebastopol almost immediately, as I felt that I needed time to integrate what he said and what he did. We came straight home and I did a “mind story” about the healing. My feeling now is that he did major good and I would definitely see him again. By the way, the tape recorder was on “pause,” so I didn’t get any of the conversation. However, the essence of the treatment was the healing, not the words.

In a way, I am now better prepared for a bad answer from Dr. Neuwirth, because Don Alejandro had said that I may have to have my bladder looked into more than once. I’m not sure if he was seeing the follow-up cystoscopic exams, or another TURBT.

In the afternoon, I went to see Dr. Neuwirth, who was quite pleased with how I looked. However, he did not examine me and his scheduler made a point of my having a physical exam with Dr. Belknap before the surgery next week on May 8. He did say that he was willing to have Julie Motz in the operating room with him. He even mentioned that she was in the operating room with a friend of his last week.

For those of you who haven’t heard of Julie Motz, I’ll give you a little run down of what I know from reading the Pacific Sun article from April 23, to April 29, 1997. The article basically states that Julie enters the operating room with the surgeon and does laying on of the hands healing during the surgery. She is the first to use energy healing in the operating room. She works primarily with cancer and heart disease patients. She is giving a lecture at Marin General Hospital on May 8 at 7:00 P. M. I’m trying to use my connection with Leslie Davenport to get to speak with Julie Motz about visiting me during my surgery next week.

Julie Motz called me a little later and said that she would love to work with me, but she can’t do it on May 8. I’m now trying to reschedule my surgery for May 9 to have her there and participate in my healing experience. Maybe I can even get her to write a preface to Yellow Stream!


In the evening, I attended Anna Halprin‘s class. As Anna was receiving an award from her piers, the class was taught by Jordy. She taught a class before, and this one was quite good. The theme of the evening was getting in touch with parts of our bodies that were free and not so free. I identified my knees as being not so free and my buttocks as free. We expressed these parts through writing, movement, working in pairs, and drawing. I drew the above picture. Click on the picture to get a full size version. Then click here to get a rotated version. Quite by accident, the picture works from both orientations. In the first, we see two people lying in the grass with a blue sky above them. In the second, the people are still lying in the grass, but now they are by a lake and the sun is reflecting in the lake. On the back of the picture I wrote,

“Life is made up of free and non-free elements. Aren’t we lucky that there is no permanent self to carry foreword after this life is over? We are free to live our life as we want and discover how to integrate free and non-free elements.”

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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

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Going Home!

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.

IMG_1635

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.

TURBT

TRUBT

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.

TRUBT
Transurethral Resection of Bladder Tumor (TURBT)

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.

First Hospital Stay

Barcelona Hospital

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.

Barcelona Hospital
Barcelona Hospital – Photo by Jerome Freedman, 2015

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.