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One Year Later

Two days ago, I received a call from Dr. Neuwirth’s office that my cystoscopy from January 14 was negative! This means that there is no longer any cancer in my bladder, and I am well on my way to a complete recovery. It also means that I am in remission. What events led up to this wonderful result? I shall try to trace what happened since my last entry Father’s day.

The summer was difficult to manage because of the effects of the chemotherapy. To help myself out, I continued body work, movement, therapy, and tennis. I did as much work as I could and was able to keep up with my assignments. I played tennis about twice a week, and that was all I could manage.

In August, we took a family trip to Santa Barbara in honor of my youngest’s birthday. The trip was pleasant, but I was not recovered from the chemo. This, I was terribly exhausted most of the day and took restoril to sleep at night. My wife and I got along quite wonderfully, considering the three girls in the other room, and my inability to function most of the day.

September began with a wonderful experience at a meditation retreat with Thich Nhat Hanh in Santa Barbara. In a way, the retreat helped to prepare me for what was the beginning of extremely hard times. On September 9, I had a needle biopsy of the growth in my left thigh, and on September 10, I underwent a cystoscopy exam by Dr. Neuwirth. The needle biopsy was so unusual that the specimen was sent off to Stanford University. The result was that I have a schwannoma in my thigh, and the recommendation was to remove it.

Even though Dr. Neuwirth did not see any visible cancer, the washings had to be sent off to the lab for biopsy. Unfortunately, the result came back that I still had some displasia and carcinoma-in-situ. This result was extremely depressing to me, as I had counted on a clean result. Dr. Neuwirth, however, was not terribly discouraged, and he expressed confidence that a six week treatment of BCG would clear up any remaining cancer in my bladder.

On a positive note, my visit with Dr. Gullion and the accompanying blood tests were good. In addition, I had a CT scan on September 24, which revealed no sign of cancer elsewhere in my body. But these results didn’t help avoid the pain and suffering that was to come.

On October 3, I went into Marin General Hospital for a biopsy under anesthesia to confirm the findings of the cystoscopy three weeks before. The results did indeed confirm that I still had carcinoma-in-situ and displasia, and that BCG treatments would be the recommended procedure.

Meanwhile, I made several appointments with various surgeons to discuss my schwannoma surgery, and on my 58th birthday, October 8, I met with Dr. Jeffrey Norton at UCSF. His arguments for immediate surgery were convincing and he said, “I can do it Friday!” In addition, he wanted to excise the lipoma under my left shoulder blade while he had me on the operating table. So, on Friday, October 10, I checked into the hospital. In the pre-op room, I pleaded one more time to make sure the surgery was absolutely necessary, but I was overruled. Dr. Norton did agree not to touch the lipoma if anything went wrong with the schwannoma.

Well, nothing went wrong, and both masses were excised. I spent the better part of three days in the hospital, and then I went home. Getting up the steps was quite a chore, which I managed by sitting on a pillow on each step. I had to get around the house in a walker for about a week, and then I could use crutches. The lipoma surgery prevented me from using crutches to get around after the surgery, and actually this is what kept me in the hospital for the extra days. You know how they want to get you out of the hospital as soon as possible these days.

I started physical therapy with Julie Wong at ProActive Physical Therapy in San Francisco on October 28. She was the same physical therapist that my wife used after her hip surgery last year. Julie is marvelous and highly recommended. I thoroughly enjoyed working with Julie. She taught me exercises to strengthen my shoulders and my legs, which I am still doing today, even though I am completely recovered from the two surgeries. All in all, I had six sessions with Julie.

I felt I was ready for the BCG treatments by October 29. Whereas the treatments themselves involve inserting the BCG directly into the bladder by means of a catheter, the precautions necessary when you get home are strenuous. Every time you urinate, you have to disinfect the toilet as well as yourself, because the bacteria is still active. I found this part to be quite annoying, and to keep this up for six weeks was a major undertaking. Furthermore, after the instillation, you must try not to urinate for at least two hours afterwards, so you have to stop drinking all liquids at least four hours before the treatment. What a hassle, but it beats the alternative hands down.

During this whole period, I felt quite depressed, and sought the help of Leslie Davenport, sometimes twice a week. Her help and guidance made the impossible just difficult, and I managed to pull through the whole thing. In addition, I managed to attend Anna Halprin‘s class as soon as I was able to get around. These two women have really helped me a lot throughout the entire duration of my illness.

On January 14, I had another cystoscopy with Dr. Neuwirth. The purpose of this procedure was to check on the effectiveness of the BCG treatments. Dr. Neuwirth made two statements that game me hope that the treatments actually worked. He said that my bladder looked like one that had been treated with BCG, and that he could tell that I was taking high doses of vitamins.

Nine days later, I had the results. I had no cancer in my bladder! I had no displasia or carcinoma-in-situ! I was in remission! What a marvelous and wonderful ending to a very difficult year. Just two days before the one year anniversary of my gross hematuria, I found out that I no longer had cancer in my bladder.

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An Unhappy Birthday to Me!

Today I turned 58, but what a miserable day it was.  As you may know, last Friday I had my cystoscopy and biopsy under anesthesia at Marin General Hospital.  The results were not favorable, but also not so bad.  There was some microscopic cancer still on the bladder wall, but Dr. Neuwirth thought that it could be removed with one or two six week treatments of BCG.  The cancer was down to grade I or II, so, all in all, it is slowly going out of my system.  The BCG treatments start next Wednesday.

This morning, we went to the University of California at San Francisco (UCSF) to meet with Dr. Norton about the schwannoma.  I expected a forty-five minute visit followed by a nice lunch at the Cliff House and a stroll through the de Young Museum or the Palace of the Legion of Honor.  This would have been a lovely way to spend my 58th birthday, but Dr. Norton changed all my plans.  He wanted to remove the schwannoma on Friday – the day after tomorrow!  Dr. Gullion supported his plan, and it seemed reasonable based on getting that thing out of my leg before the BCG treatments begin.  I was in a state of shock about the urgency in his analysis of my problems.  He went so far as to say that the lipoma on my left shoulder blade should also come out.  So I spent the rest of the day registering for the surgery on Friday.

I was a bit disappointed because I had worked so hard to get appointments with neurosurgeons next Monday.  I thought that because the schwannoma was a nerve sheath tumor, it should be removed by a neurosurgeon.  Dr. Gullion did not share my ideas about the neurosurgeon.  He thought that Dr. Norton was better because he understood the oncology.  Dr. Norton has done many of these, so I feel confident in him, but the schwannoma will be gone before I have a chance to see the other surgeons.

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Thay’s Lecture

This evening, we went to Thich Nhat Hanh‘s lecture at the Berkeley Community Theater along with 3500 people attending the lecture.  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.  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.  However, Dr. Halberg and Dr. Huang both assured me that these cells could be a result of the radiation.  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.  The preliminary indication is that I have a schwannoma, which has to be surgically removed in order to accurately identify it.  This means another set of doctors at UCSF, and perhaps a three night stay in the hospital there.  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.  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.

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No Pot stickers for my Chop Sticks

Today I’m back to healing. I went to see Gail Teehan this morning and spent about an hour teaching her how to do a mind story. Then I thought I was scheduled in for a Feldenkrais Functional Integration lesson, but it turned out to be an hour and a half massage, and was it wonderful. It took me a little by surprise to have the massage, but she did such a good job, I didn’t mind! I remember crying several times, as she was working on my shoulders, and she said that she felt that all of the poisons are out of my system at last. We then had lunch together in the shopping center at a Chinese restaurant.

Next, I went to see Leslie Davenport. While I was waiting to see her, I managed to get a little work done. The session with her was so fine! I seem to come out of there with profound insights and a lot of wisdom. She really validated my use of mindfulness in my healing process. I am really fortunate to have three such remarkable healers in my life who I love very much. Of course I’m referring to Gail, Leslie, and Anna Halprin, who is getting a life-time achievement award for choreography at Duke University as I write. I’m grateful for my physicians, Drs. Neuwirth, Gullion, and Halberg, and I feel that they were wonderful technicians who implemented a protocol that I found in my own research. But I really feel that a lot of my physical healing and all of my mental and emotional healing  has come through the hands of Gail, Leslie, and Anna.

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A Day of Recovery

I plan to spend most of the day working in bed today, as I really felt weak yesterday. I don’t have any appointment I need to rush off to, but I am going to try some stretching exercises.

I spoke with Dr. Neuwirth today and found out for sure that the little 3 mm specimen was completely removed and there is nothing to worry about. Therefore, my bladder is totally free of cancer now, and I intend to keep it that way.

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An Angel Over My Shoulder

Today was the surgery and Julie Motz was the angel over my shoulder! She arrived at the hospital at 7:00 A. M. and stayed until about 9:30 or 10:00. I believe that her presence was appreciated by Dr. Neuwirth as well. I am not sure that I can tell you exactly what she contributed to the operating environment, but I felt comfortable. I haven’t had a chance to find out what she thought yet, nor do I know the results of the biopsy.

The good news is that I was home by 3:00 P. M. and spent some real quality time with my son, who came to visit me. On the side that is not such good news is that I came home with a catheter in me, which has to be there until Monday to take pressure off of my bladder. Aside from feeling really tired, I’m doing quite well. I have no pain, and only a little discomfort from the catheter.

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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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“Humor Comes a Year Later”

March 4, 1997 – “Humor Comes a Year Later”

The above quote was Dr. Halberg’s comment as we left the radiation therapy simulation session. “You will laugh about everything that happened today in about a year!” she said. Everything that could have gone wrong did! In the first place I had to walk to Dr. Neuwirth’s office to have a catheter put in, since Dr. Halberg had difficulties on two attempts. I’m sure that my bladder was sensitive due to having the catheter in six days earlier, and she didn’t want to injure me. But, Harry had no problem! It must be his great experience at putting in catheters! However, he was willing to hurt me, but just a little. Secondly, the catheter tube did not match the syringe, so they had to send someone out to find a compatible syringe.

The rest of the procedure went fairly smoothly including the Barium enema, setting up the x-ray device according to the Shipley protocol, tagging my body for future radiation sessions, taking the necessary x-rays, and finally removing the tubing.

I was exhausted from this hour and one half procedure that lasted almost four hours! I have nothing else to say at this time!

Oh, by the way, the treatment begins on Monday, March 10 with a dry run on the radiation equipment. Chemotherapy and radiation therapy begins on March 11.

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Down with the Tube!

February 26, 19997 – Down with the Tube!

My catheter was finally removed this morning with such great relief. The only bad thing about the meeting with Dr. Neuwirth was that the pathology report showed that more cancer had been resected, but this doesn’t change the treatment plan. We finally got the feeling the Dr. Neuwirth was behind us all the way with using the Shipley method.

We stopped by the Pine Street Clinic to pick up a powered form of the Traditional Chinese Medicinal herbs that Michael Broffman had prepared for me. Luckily, Michael was available for a brief conversation about the latest pathology report and Dr. Neuwirth’s attitude. He felt strongly that it was still in my best interest to proceed with the Shipley protocol.

Pine Street Clinic

Later in the afternoon, I received a call from Dr. Keith Block, an internist who has put together a staff of oncologists, herbal chemists, dietitians and others who offer a combined program of chemotherapy, herbs, diet, psychological support, exercise and stress management. He is a friend of Dr. Rossman and I had placed a call to him as far back as February 9. Dr. Rossman and I had several email messages going back and forth, and finally he called back.

Dr. Block told me that he had a holistic program that attacked the cancer cells at the molecular level. He uses intervenes nutrients combined with oral agents and a detoxification program to reduce the side effects of the chemotherapy. He uses fractional dosages for optimum effectiveness combined with patient comfort. The rest of his life-affirming program consists of nutrition, exercise, supplements and stress management techniques.

I really felt confused after speaking with him, as he likes to treat patients in his facility in Evanston, IL. While it is not out of the question for me to travel to Evanston (after all, I spent three years of my life in Chicago and three years of my life in Evanston!), I would be giving up all my support systems back in the Bay Area. So after an excellent guided imagery session with Leslie Davenport, a very supportive conversation with Dr. Rossman, and a good night’s sleep, I felt better about staying with the plan I already had in place.

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Thinking Things Over

February 24, 1997 – Thinking Things Over

I did not feel too well today. I had to go to Dr. Neuwirth’s office today for them to take a urine sample and an hour or so later, to Dr. Slattery’s office to have my teeth cleaned. While neither of them was terribly unpleasant, the combination was exhausting. At the dentist’s office, I experienced teeth cleaning with ultrasound. It seemed to go faster and easier. However, I chose “laughing gas” as an escape, after which I felt a bit nauseous. At home, I took a nap and started to feel better.

Having finished Love, Medicine & Miracles the night before, I started reading Cancer as a Turning Point. It became clear to me that there are several aspects to mind-body healing. First of all, there is the necessity of a positive outlook on life and your illness. Without these, there is no place to begin. One must therefore have something to look forward to and a desire to survive. According to Dr. Siegel, in his chapter on “Becoming Exceptional,” Dr. Al Siebert identifies the following indicators of self-motivated growth (and I quote):

  • Aimless playfulness for its own sake, like that of a happy child.
  • The ability to become so deeply absorbed in an activity that you lose track of time, external events, and all your worries, often whistling, humming or talking to yourself absentmindedly.
  • A child’s innocent curiosity.
  • An observant, nonjudgmental style.
  • Willingness to look foolish, make mistakes and laugh at yourself.
  • Open-minded acceptance of criticism about yourself.
  • An active imagination, daydreams, mental play, and conversations with yourself.

Dr. Siegel also identifies Al Siebert’s indications of a person reaching synergistic functioning (and I quote):

  • Empathy for other people, including opponents.
  • The ability to see patterns and relationships in organizations or equipment.
  • Recognition of subliminal perception or intuition as a valid source of information.
  • Good timing, especially when speaking or taking an original action.
  • The ability to see early clues about future developments and take appropriate action.
  • Cooperative nonconformity: refusing to be controlled by improper laws or social standards, yet choosing to abide by them most of the time for the sake of others — unless attempting to change them. In other words, and avoidance of empty gestures.
  • Being comfortable in complex, confusing situations that others find bewildering and frightening.
  • Keeping a positive outlook and confidence in adversity.
  • The ability to absorb new, unexpected, or unpleasant experiences and be changed by them.
  • A talent for serendipity: the ability to convert what others consider accidents or misfortunes to something useful.
  • The feeling of getting smarter and enjoying life more as you get older.

Although these are laudable goals, it is important for me to keep them in mind, but continue to make progress on my own. I am particularly interested in “keeping a positive outlook and confidence in adversity”, as this seems to be the most difficult area for me. “Cooperative nonconformity” also sounds good to me!

In line with these observations, Dr. LeShan talks about his psychotherapeutic methods, which focus the healing energies on directing our lives towards the needs of our individual structure and what provides us with the maximum excitement in life, rather than the traditional questions of, “What are the symptoms? What is the hidden lesion that is causing them? What can we do about the lesion, or failing that, how can we teach the person to compensate for it?”

So really, our job as patients is to find our own true nature and not let anyone cause us to deviate from our path. This means that we have to be blatantly honest with our feelings and forget being nice, at all costs. We have to take our lives in our own hands and find out where our bliss is. We need to follow our bliss all the way to complete health and remission.

This is no small task! It requires strength and courage to confront your deepest regrets and allow them to disappear. We have to get involved so totally in our lives that we forget our illness and allow our immune system to illuminate it on its own.

Cancer as a Turning Point

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