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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Lessons Learned

To continue my story, I’d like to share with you some of the lessons I’ve learned in dealing with cancer. First and foremost is the love and support of caring friends and family. For this, I am very thankful, and don’t know exactly what to say beyond how difficult it would have been without them.

Secondly, I learned the value of doing my own research, and, at the same time, having the support of competent physicians and healers. I could not ignore the input of the doctors, but I knew enough to present a viable alternative. I am grateful to Doctors Harry Neuwirth, David Gullion, Francine Halberg, Sara Huang, Robert Belknap, Peter Carroll, Jeffrey Norton, Peter Klaphaak, and William Shipley for their willingness to put up with my radical approach to healing. When I think about the possibility of having had a radical cystectomy and compare it with the treatments I’ve had, I really count my blessing at having made the right decision for me. The radical cystectomy could have led to complications too numerous to understand at the time of the surgery. I am happy that I bypassed this option.

Thirdly, I don’t have any clue about the direct effect of the cancer support groups, alternative medicine, supplements, body work, and psychotherapy had on the physical healing of my illness, but they were all indispensable for my emotional and mental healing. To this, I owe a debt of gratitude to Dr. Martin Rossman, Thich Nhat Hanh, Leslie Davenport, Anna Halprin, Michael Broffman, Gail Teehan, Elyse Genuth, Dr. Van Vu, Dr. Patricia Frisch, and Alan Sheets for their contribution to my healing efforts, be they of the body, emotions, mind, and spirit. I guess I’ll never know whether these methods had anything to do with my healing, but I don’t want to think about how it would be if I hadn’t done them.

Finally, even with all the love and support of the people I’ve already mentioned, I have to acknowledge my own part in this process. I did my research, found a creative outlet for my experience in these pages, practiced mindfulness during critically ill times as well as healthy ones, and continued to look forward to a happy and healthy life beyond cancer. My goal has been to maintain as much mindfulness in all my activities as possible, including, but not limited to time on the tennis courts, walking meditation, computer work, and enjoyable outings with family and friends. My experience has been beneficial to other people, as well, through my web site, support groups and contact with friends taken ill by a similar disease. I am happy that I can help them, but not quite happy with the path that led me to the knowledge I have to do so.

In conclusion, let be state once again how important I think it is to combine the best of Western medicine with natural healing methods to come up with a treatment plan that can result in a cure. The process of healing the body must be accompanied by the process of healing the emotions, the mind and the spirit.

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No Anna, No Dance!

Today is Monday and Anna is not having class tonight. But I have to prepare for chemotherapy tomorrow morning. This involves having blood work done early this morning and a visit to Dr. Gullion at 10:00. So I arrived at Meris Labs at 9:15 A. M., and thankfully, I had my lap top with me so that I could get some work done.  I didn’t get to see Dr. Gullion until 11:15!

We discussed the protocol and my blood tests. He thought that in my situation, it was a good choice and he wished more bladder cancer patients consulted him before they had a radical cystectomy, so that at least a bladder sparing protocol could be attempted. Although my white blood count was the lowest they had tracked, it does not inhibit continuing the protocol. So, tomorrow, we start again, but for the last time.

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More Down Time

I haven’t written much in the past few days because I am still recovering from the last round of chemotherapy and radiation. I spend most of the days lying in bed, reading, and trying to maintain mindfulness. I feel a bit nauseous all the time. Some time I have tremendous gas pain, but most of the time, I just lie in bed and recover. It’s not very exciting, but it sure beats the alternative of radical cystectomy!

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Fog in the Bay

I took a break from my normal working day to walk by the water in Sausalito, meditate, and do some of the strengthening exercises for my immune system. I noticed that I could not see San Francisco, Berkeley or Oakland because of the fog, but Sausalito was clear. The meditation period was quite nice, and I felt rather good to be doing the stretches again.

My surgery has been changed to 7:30 A. M. on Friday, May 9 and Julie Motz will attend!

In my session, today, with Leslie Davenport, I dealt with the anxiety I feel about the question of whether or not there is still cancer in my body that represents a threat to my life. She felt confident that this was a good session for more EMDR (Eye Movement Desensitization and Reprocessing), and I thought it wise to allow her intuition to guide our work together. Several issues came up with regard to various stances about my current physical condition. The issues that were most prominent in my mind were the unattractiveness of radical cystectomy on the one hand, and the powerful healing session I had with Leslie on March 21 on the other. I needed to break through my resistance to allow the radical cystectomy to be part of my healing, and not seeing it as an invalidation of “healthy cells grow all by themselves.” In the end, I realized that I was doing my best to help my recovery, and that as long as I kept looking deeply into alternatives as they come to me, I don’t have to feel bad about anything I’ve done. It is this attitude that brought Julie Motz into my surgery, and gave me the opportunity to see Don Alejandro.

In the evening, I attended the “Life Threatened” group at the Center for Attitudinal Healing and my wife attended the “Care Givers” group. Our group was quite smaller than last week, and all but one person was there last week. It dawned on me how much worse off each of the other members were than me, and I was struck with a feeling of compassion for their suffering. When it was my turn to share, I offered a copy of Yellow Stream to the Center, and talked about Julie Motz. One of the people there had met her at the home where she is staying and said that she was pretty incredible. I believe her! I also spoke about Don Alejandro and my nervousness over next week’s biopsy.

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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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Bubbles of Energy

Leslie Davenport’s group today was quite special. She led a guided imagery experience which was quite similar to the one I had earlier this week. We started with deep breathing, as usual, and switched to relaxing the body, starting with the eyes, working up to the forehead and to the top of the head. Then we moved to our face and then on down to the feet and toes. From there, she had us imagine bubbles of energy rising from our fully relaxed feet and legs on up through our torso and winding up at the top of our heads. The visualization was very effective for me, and I felt very relaxed during the whole process. I probably could have fallen asleep several times. I later found out that most of the people in the room felt a deep sense of relaxation also.

In response to a question from one of the members of the group, I had an opportunity to speak about managing your own health care and how to make appropriate medical decisions. I explained how I had to make a tough decision back in early February regarding radical cystectomy versus the Shipley approach with I eventually decided upon. I also spoke about integrative medicine as the approach I took. This gave rise to comments by many other people supporting what I had to say and enhancing my viewpoint. I shared that I really wanted to come to the group mostly when I was feeling good so I could share my healing experiences with other people and not be so needy. All in all, I felt really supported and that I had contributed to the healing experience of others in the room.

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A Mini Enneagram Lesson

April 6, 1997 – A Mini Enneagram Lesson

My oldest daughter is returned from Miami today only three hours late!  It’s been six days since I’ve seen her, and by her silence I know that she is safe and having the time of her life.

I was supposed to have a massage this morning, but it got cancelled because of the birth of a new baby instead! Oh well! So instead, I thought I’d tell you what I’ve been thinking about lately according to the enneagram.

The enneagram is a diagram that describes nine personality types shown in the diagram to the left. Each personality type has associated with it a vice and a virtue. In my case, since I’m a trooper, my vice is fear and my virtue is courage! This whole cancer issue for me has been a question of courage to face and accept my condition and find the necessary faith to take charge of my own treatment plan. By learning your enneagram point, you can discover what your vice and virtue are, and manage your case with the appropriate actions for your personality type. For more information, please see my enneagram pages.

I received another email from R. M., a 59 year old man in New Zealand who has bladder cancer and doesn’t want radical cystectomy either. We have been corresponding for more than a month, and the message I received today was quite special. He shared with me that he too had been a follower of Rajneesh, and offered many of Bhagwan’s meditations to me. I wrote back that I was called Swami Deva Ninad by Rajneesh in 1975 and knew all about the meditations. I’m waiting to hear back from him!

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Healing Support

April 3, 1997 – Healing Support

Today I went to Cancerport again. The group was once again quite small, so just about everyone got a chance to speak. People asked how I was doing, and I had a long opportunity to explain what was going on with me. Basically, I told them that I had not recovered as quickly from the second chemotherapy and radiation as the first, but mentally and emotionally I was doing quite well. I still have difficult periods with my elimination and a lot of tiredness. I explained how my meditation and imagery work kept my mind focused in my body and away from morbid thoughts. I explained how radical cystectomy was the standard of treatment and that I had decided to take charge of my own case by doing the Shipley method and just how that worked. I told them how I used the web to find out information about my disease and as a means of tracking my healing progress.

Someone then asked me about how I felt about having cancer. I proceed to explain that my father had bladder cancer and died at the age of eighty-six from it, but that he had had a tumor in his bladder for perhaps twenty years. I told them about my son’s metastatic Wilm’s tumor, and that it was another form of urinary track cancer. Then I explained my sister’s death due to Leukemia twenty-eight years ago and my mother’s osteosarcoma. Finally, I mentioned that all my aunts and uncles died from cancer. Thus I felt that I had a genetic disposition towards getting cancer and that the stress brought about by the loss of my job two and one-half years ago probably brought it on.

The discussion turned more towards the alternative treatments that I am using and I spoke about specifically about Michael Broffman and Marty Rossman as partners in my care with the Marin Cancer Institute. I tried to explain that one did not have to believe in meditation or imagery for them to work, even though several people insisted that some level of belief was necessary. So I explained that just a people go to work out at the gym to keep their physical bodies in good shape, they could learn to quiet their mind with a little practice. Wonderfully enough, other people with imagery and/or meditation experience backed up my mini-lesson on meditation, and I felt safe enough to share the insight about “healthy cells grow all by themselves.”

From there, I went to Gail Teehan for another Functional Integration session. It was tremendously healing, once again, and Gail and I shared a lot with each other about our lives and our personal growth. I love working with her because she’s so understanding and has such great hands. I bet she gives a hell of a massage!

Tonight I was supposed to meet my wife at M. C.’s house for dinner and a movie, but I really don’t feel up to going out again. I think yesterday was too much for me and I still exhausted from the long drive to Menlo Park.

Well, “enough for today,” as Bhagwan used to say!

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More Resection?

February 13, 1997 – More Resection?

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.

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