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.


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.


A Confusing Day with Surgeons

When I first spoke with Dr. Gullion about the schwannoma, he referred me to Dr. Warren, a doctor at UCSF to do the surgery.  On Monday, his office called me to say that Dr. Warren was going to be out of town for the next few weeks and recommended that I see Dr. Norton.  Well, in tune with my attitude about doing the best possible research, I didn’t want to see Dr. Norton without checking into the matter more fully.  So, I asked Dr. Gullion what he thought, and he wanted me to speak with Dr. Warren first.  Dr. Gullion finally called me back this morning at 11:00, while my appointment with Dr. Norton was at 10:45.  I also had an appointment with Dr. Warren, so I missed both of them through all of the confusion.  The point of all of this is that I want to be very careful about who keeps me from playing tennis for any period of time due to the surgery on my leg.

I finally took some time away with my wife over the weekend.  After seeing Leslie Davenport on Friday, we took off to Gualala, a small town on the Mendocino coast.  We spent two nights in different motels, each equipped with a Jacuzzi in the room.  We had a wonderful time.  The beach at Gualala is beautiful and awe inspiring.


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.


Eric Vormanns

Eric Vormanns is a West African energy healer residing in Belgium.  He is in Marin until September 29, and I was referred to him by Leslie Davenport.  My session with him left me quite sad.  Even though he thought the cancer would eventually go away, he thought that I was not doing what I came to this life to do.  He thought that I should be writing, teaching, and practicing in the areas of healing and spiritual growth.  I felt sad because I knew that I lacked the courage to devote my life to these activities.  Of course, this web site and other activities contribute, but I don’t feel that it is enough.  I need to get Healthy Cells Grow All By Themselves published and appear on talk shows all over.

In the evening, I went to Anna Halprin‘s class.  The picture I drew was quite amazing.  It was called, “grib-it,” and featured a frog and the stream of life.  I felt quite good expressing myself through this drawing.  It seemed to contain everything that I experienced in being with Thich Nhat Hanh.


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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.


More Waiting

I found out today that the biopsy sample had to be send to Stanford University for more tests.  Apparently, the tests that they could run at Marin General Hospital were not conclusive, so they needed to consult the expert in the field, Dr. Richard Kempson.  I found out about all of this by repeated calls to Dr. Head without hearing anything in return.  So I picked up the phone and called Dr. Jacques, the pathologist at Marin General and he told me the news.  He identified the mass as a stromal tumor, either from fat or the nerve sheath, but he wasn’t certain if it was malignant or benign.  So here we have to wait through the entire weekend or more for the results.  By the way, I also phoned Dr. Kempson, but he had not received the sample yet.

My session with Leslie Davenport was helpful in dealing with all of this stuff.  I think I’ll be able to make it through the weekend because of the Day of Mindfulness with Thich Nhat Hanh tomorrow!


Gabrielle Roth

This evening, I attended an evening with Gabrielle Roth, and American Shaman.  Back in 1975 and 1976, I spent much of my time with Gabrielle, as her student and assistant.  Her main contribution to my life at that time was to support me through the worst of my son’s bout with cancer.  In addition, I learned a lot about movement from her.  She actually had trained with Anna Halprin. On the day my son went into the hospital for surgery of his tumor, I was supposed to go to Eselan with Gabrielle to assist her in her workshop.  However, this was not to be.  A month earlier, Gabrielle and I put on an amazing event to honor Rajneesh.  We had about 250 people attend, and it was wonderful.

This evening was very nice for me.  As Gabrielle entered the auditorium, I greeted her and she remembered me by name.  She had just recently told someone about my son’s miraculous recovery 21 years ago.

After about thirty minutes of movement, Gabrielle began to speak about trialectics (although she didn’t mention the name).  From my understanding, trialectics teaches that for every active force and its corresponding passive force, there is a neutralizing force to go along with them.  Gabrielle spoke about awareness, attention, and action in the context of ourselves, our one-on-one relationships, and our relationships to a group.  These last three concepts fit nicely into the three instincts of the enneagram.  In respect to awareness, attention, and action, Gabrielle spoke about thoughts, feelings, and bodily sensations – the three centers of intelligence.  At an appropriate time in the discussion, I delivered a little speech about the advanced stages of these centers.  I used my concept of playing tennis with mindfulness as an example of being about to move before you know how you will move, that is, very instinctually.  The phenomena occurs in athletes when the enter the “zone” of ultimate capability.  This was an example of body awareness that goes beyond the normal range of effort.  I similarly spoke about feeling things before you know what you will feel, giving rise to lucid dreams, clairvoyance, and other psychic phenomena.  Finally, I spoke about having thoughts that seem to come out of no where in which you just simply know.  With these capabilities in place, one being to experience what it is like to be another.  Gabrielle was pleased with what I had to say, and told the crowd that this was the essence of what she was teaching.

By the way, earlier that day I had a wonderful session with Leslie Davenport.


Feldenkrais with Harold

On Wednesday, I had another session with Leslie Davenport, and today, I met with her with my wife for the second time.  Things went much better this time, and we seemed to get along better after the session.  I was careful to express what I thought would work for me and I felt that Mala really got it.

Earlier, I had a Feldenkrais lesson with Harold at the Feldenkrais training led by Anat Baniel.  Although the session was not as good as I am used to, it worked well for me.  Harold runs several old folks homes and his daughter runs physical therapy studios in the Chicago area. Gail and I took Harold out for lunch to tell him about our workshops.  His reaction was favorable and he said that he would talk things over with his daughter and get back to us.  His story about his illness and how he came to the Feldenkrais training was fascinating, but I won’t go into it here.


A Family Vacation

Today, we celebrated my younger daughter’s birthday in Santa Barbara. We drove down here yesterday, only to find out that the reservations that had been confirmed were purged from the computer of the Pacifica Suites. Fortunately, someone canceled in time and we were able to get in.

I was especially exhausted today, for reasons unknown. The days before the trip were pretty much normal for me. I had a massage on Tuesday, but had to leave immediately for a meeting in Menlo Park. Wednesday, my wife and I had a joint session with Leslie Davenport. The session was fairly stressful, as many difficulties came up, but I seemed to recover from that session pretty well. So basically, I don’t understand why I was so exhausted today.