Discussing The Options

On January 10, 2014, we visited Dr. Maxwell Meng.

Dr. Meng is now considered the “go to guy” when it comes to radical cystectomy – the removal of the cancerous bladder and replacement with an artificial one. If you have followed my story, you know that this was the “gold standard” of bladder cancer treatment back in 1997. It still is! As Dr. Carroll once said, “[Bladder removal] is a piece of cake!”

We discussed the types of artificial bladders, but I won’t go into details. The bottom line is that I was told that I need to have a radical cystectomy. Period.

One possible option is to have neoadjuvant chemotherapy prior to the surgery. For this, we were to consult Dr. Charles Ryan on January 16.

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Hospital Stay

The surgery (TURBT) took place on January 7 and I was in the hospital for three days and two nights.

On the evening of January 7, I suffered a severe pain in my left kidney. Some say it was because I didn’t let the nurses give me enough pain killer medication, but it could have happened even with it. The pain went away soon after a nurse injected some medication in my IV.

The pain has not returned and I made it through the rest of the hospital stay without incident.

It was a blessing to have Rachael prepare kitchari – an Aruyvedic composition of mung beans, rice, vegetables, and spices. Each day, she brought an new kitchari and they were all wonderful. You know how atrocious hospital food can be!

Visitors made my stay in the hospital much more comforting.

On the morning of January 9, Dr. Neuwirth came into my room and announced quite confidently, “You have muscle invasive bladder cancer and you should go see Dr. Maxwell Meng at UCSF” – all in one sentence.

By some miracle or perhaps a sense of urgency, we got in to see Dr. Meng, with CT scans and biopsy samples, the very next day.

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The 2013 Episode

Welcome to those of you who have been invited to view this page and other pages related to the 2013 Episode.

What is the 2013 episode?

I have a new muscle invasive bladder cancer that revealed itself at the end of 2013.

Throughout the ensuing period, my mindfulness practice has kept me positive and open to new possibilities. By now, three months have passed and mindfulness remains my true home and my refuge.

I am convinced that I will be able to maintain a mindful attitude, no matter what happens.

Here are the events that have occurred to date. I’ll try to keep my comments brief.

On this day, November 21,2013, I had a cystocopic exam by Dr. Neuwirth, my urologist of 17 years. I like to have my exams just before Thanksgiving so I can relate the good news to my family and friends.

Dr. Neuwirth did not see anything at all! We celebrated together.

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Less Good News

I had my meeting with Dr. Neuwirth this afternoon. The news was not that good. The two polyps were actual T1 tumors, which he removed during the TURBT last week. The good news is that BCG treatments should be quite effective against further tumors. The bad news is that it is my bladder that has to undergo these treatments. Dr. Neuwirth seemed hopeful, however. I start the BCG treatments in two weeks and I have to go once a week for six weeks.

BCG (Bacillus Calmette-Guerin) is a bacterial preparation of a strain of tuberculosis vaccine.  It is instilled in the bladder with a catheter and needs to remain there at least two hours. The last instillation in 1998 lasted 12 years. So if this works as well as the list time, I’ll be 82!

I felt like I had just lost an important tennis match – kind of down and low energy. Fortunately, Lady Catherine (my daughter’s best friend) came for dinner and took a lot of the sting out of the news. After she left, I spoke with Mala and the girls and could feel their love and concern. Their reaction was surprisingly calm, as they have a lot of love for me and know that my mindfulness practices and integrative medicine with get me through.

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TURBT

The surgery went well, at least as far as the reports I’ve received so far have shown. I lingered in the recovery room until about 10:15. I wanted to be sure that I would have minimal problems with the after effects of the anesthesia, so I stayed a little longer than expected. I was fed some juice and crackers and that seemed to satisfy me for a while.

At home, Mala has made chicken soup and a baked potato for lunch. I spend most of the day going in and out of sleep and watching the blood flow out of my bladder. I spent much time meditating and watching Stephen Hawking’s series on Into the Universe from the Discovery Channel. Night came quickly, but sleep was a little difficult until I took my regular doses of melatonin, Bone Up and D3. I had to use the bathroom about five times during the night, but managed to get a good night’s sleep.

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Cystscopy

As mentioned in the introduction, I had my annual checkup this day. It was actually six weeks past one year, but I was prepared to even wait longer to go in, due to twelve years of a clear bladder. For the first time, Dr. Neuwirth found two small polyps in my bladder. I was surprised when he removed the scope without taking samples for biopsy like he usually did. He told me to get dressed and he would come back and talk to me. When Mala came into the room, he told us that he found the polyps and that I would need a CT scan and a TURBT (transurethral resection of the bladder tumor). So we go busy making plans for a CT scan on Friday and out-patient surgery one week from Friday.

The combination of Mala’s infection and the dense material I saw in my urine had led me to prepare for something like this. I had resumed my imagery and mindfulness practices around a healthy bladder, so I didn’t take it too badly.

When we got home, I started down the road of research on bladder polyps and called Michael Broffman. Michael was encouraging and said that in his experience, the polyps are usually benign. We’ll see!

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Having a Bad Day

I had a bad day today, which probably resulted from not enough good sleep. I worked for a while in the morning, and then tried to take a nap. Once again, I couldn’t sleep, but the quite, restful mindfulness of breathing kept me from caving totally in.

In the afternoon, I went to see Alan Sheets for a Feldenkrais treatment. Alan’s gentle hands and compassionate understanding were very helpful. He was purposefully trying to move me into point nine on the enneagram, as this is my so-called, “heart point.” The heart point on the enneagram is the place that you tend to move towards in a secure life situation. It goes in the direction opposite to the arrows on the enneagram. For me, as a point six, the heart point is point nine. Point nine on the enneagram represents sloth with respect to spiritual growth and doing good things for yourself. I often find myself there when I am comfortable and relaxing with my children. Point nine is the point where love enters the enneagram. It is a point where well-adapted individuals remain peaceful without turning away from problems. The point in the direction of the arrows is know as the “stress point.” For me, this is point three on the enneagram. Point three represents the over-achiever, which experience I’ve had many times in my life as I have tried to enhance my professional career. For more information on these and other points on the enneagram, please visit The Enneagram in the Electronic Tradition.

When I returned home from my appointment with Alan Sheets, I once again attempted to nap, with a similar result to the morning. I know what is bothering me, but that hasn’t helped my sleeping situation. I am rather nervous about the results of my transurethral resection of the bladder tumor (TURBT) on Friday.


In the evening, I struggled to make it to Anna Halprin‘s class. She had just returned from the opening of the FDR Memorial in Washington, D. C. Apparently, her husband had a lot to do with the internal construction of the memorial. She sensed my discomfort and had us work primarily on our backs in order to conserve my energy. She had me moving my back in ways I’ve never experienced before, and it was quite amazing. I realized that one could do “moving meditation” in much the same way one does “walking meditation” in the Buddhist tradition. Her guided imagery took us to a clear blue sky above an expanse of ocean, with waves to match our breathing. We were to visualize a creature either in the sky or the ocean. I saw a whale most clearly and drew a picture of the wale just having complete a dive, with its tail still visible above the ocean surface. I wrote:

“I’ve created a ‘whale’ of a problem that needs to be solved. What I need to do is follow the lead of the whale and allow my tail (how about tale – Yellow Stream!) to float freely on the waves.”

By the end of the evening, I was feeling much better. Anna placed me in the middle of the circle so that everyone could send me healing energy for the upcoming ordeal. Each person found a spot to touch me and bring even more healing energy into focus. It was a wonderful experience!

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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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“Waiting is … Grocking in Fullness”

March 28, 1997 – “Waiting is … Grocking in Fullness”

Today we begin the long wait for the results of the induction chemotherapy and radiation therapy. Frankly, I am quite pleased with the results so far, and I am thankful for possibly adequate time to build up my immune system so as to eliminate all cancer cells, dysplasia, and atypia. Using Broffman’s protocol and other supplemental and conjunctive approaches, I plan to be free of cancer five weeks from now when I have my TURBT.

In case you have forgotten the above quote is from Robert Heinlein’s Stranger in a Strange Land, which is wonderful entertaining reading while you’re recovering from any illness.

This morning I had another wonderful guided imagery session with Leslie Davenport. The focus of the session was on what guidance I need to make it through this period of waiting. Most of what came up was being in the present with my breathing (“breathing in, I’m healing myself, breathing out, I’m clear of cancer”). The other part of it seemed to come from my past experience with my son. My friend B. C. and I performed certain magical rituals that I think had an effect on his health. I’m now on the lookout for such magical thinking. At the group session which followed my guided imagery, this concept came out in a drawing I made of a healing spot in the Ozark Mountains in Arkansas. Perhaps tuning into that healing spot well enough will do the trick, but I certainly want to do some more exploring.

I came home to nap and then had a visit with A Ce Diamond. I plan to do a web page for his non-invasive form of Body Sculpture. Stay tuned!

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Stranger in a Strange Land

It’s All Downhill From Here

March 21, 1997 – It’s All Downhill From Here

Once again, I spent the morning playing tennis. It was very nice to play with J., V., and C. These are some of my favorite partners and we all get along so well. On the court next to us was another foursome that I often play with. D. F. and E. M. even visited me in the hospital during the second TURBT. I felt comfortable and excited to have the opportunity to play again.

C. was having a tough time getting into her game. She had not been playing much lately, because of work obligations, so her game was a little off. I coached her to remain anchored in her body and focus on her belly breath. From then on, her game improved. Nevertheless, we all had a marvelous time!

I had a conversation with my son in which he told me about two productions that he could play in. One is a Victor Herbert production of Naughty Marietta. The other is The Barber of Seville, with the same production company that produced La Boheme. He was telling me that the lead role in The Barber of Seville may be too difficult for him and maybe he should settle for a more limited role. He seems to be quite confused about this matter. So, being a good dad, I expressed to him how I thought that the people who succeed in the entertainment business really stretch themselves and go for the top productions that they can get in to. He is taking my advice under consideration.

In the afternoon I had the best guided imagery session that I ever had with Leslie Davenport! After talking a while about the details of my recovery, I decided to simply see what came up for me in the session, rather than have a planned agenda. The session was so incredible that I decided to incorporate a large portion of it in the transcript of the session (see Guided Imagery Transcript). It really speaks for itself, and I invite you to explore it!

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Copyright © 2004-2018, Jerome Freedman, Ph. D.