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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The Frog on the Leaf…

April 14, 1997 – The Frog on the Leaf…

Compared to yesterday, this was a fine day, but I was still haunted by the cost of cancer. I worked in the morning and then went to have a session with Alan Sheets. He worked on my knees, lower back, shoulders, cranium, and bladder. The session was very relaxing and I didn’t feel the need to nap for the rest of the day.

From Alan’s office, I met G. S. at the California Conservatory of Music to pick up twenty copies of Yellow Stream which my son had made for me. These copies go through the beginning of chapter eight, and are expressly for the purpose of finding a publisher for the web site as a book. I might change the title to “Healthy Cells Grow All By Themselves” before final publication.

From there, I went to Golden Gate Park for a walk and a time to be alone in nature. I just had a feeling that this would be better for me than rushing back home to get more work done on the Sniffer. On the way to the Redwood Grove, I passed a small pond with beautiful, broad leaves in it. Perhaps they were water lilies not yet in bloom. It was a beautiful pond, and then I noticed a frog sitting on one of the leaves. The frog was as big as the leaf, about three inches long, and two and one-half inches wide. I stood and watched the frog for several minutes. When I thought about it later, I thought about this poem:

The frog on a leaf
In the pond
In the Arboretum
Just sitting
Doing Zazen!

I wandered off to the Redwood Grove and found a place to sit on the stump of a redwood tree to meditate. I was surrounded by redwood trees and sat next to another pond (no frog) for about fifteen minutes. Then I searched out the incense cedar tree that my son and I often visited when he was young. In fact, it was after playing in that tree that he told me something was wrong with his stomach, and a few weeks later he was diagnosed with Wilm’s Tumor. I hugged the tree and offered prostrations to it for helping heal my son and now I was asking for its help to heal me. The prostration was humbling and healing at the same time. Hopefully, no one saw me doing such a strange thing.

Next I visited the moon viewing platform which juts out over another pond (no frogs here either) in hopes of running into Itzzy, who often does Tai Chi on that platform. Then it was time to go and I slowly left the Arboretum being mindful of each step and each breath.

At night, I went to Anna Halprin’s class and offered her the first printed copy of Yellow Stream. She seemed really grateful. The class got off to a slow start, with Anna’s boom box not working. We sat and did breathing exercises and I noticed that several people were having a tough time. I thought that this would have been a good evening for a long check-in, but we moved forward anyway. Anna spent much of her time with the woman that was having the most difficulty, and I enjoyed dancing to the rhythms of the drums that were playing when we finally had some music.

My drawing came right out of my gut. I looked at the box of crayons and noticed that there was a small piece of a thick, red crayon that appealed to me. I picked it up and started drawing bold, thick curved lines that eventually resembled a large hourglass, but in reality, it was my anger of the cost of cancer coming through. I wrote, “I want to see my anger red!” I wanted to have an intuitive feeling for why I was so pissed off about the cost of treatment, or at least have someone tell me what I was feeling. The expressing of anger in the drawing was quite strong, and I received a lot of good feedback about it during the ensuing discussion.

As people shared their drawings, I felt the group coming closer together. I stated, “I finally feel that the group is coming together. Even though we are still having a tough time, we are having a tough time together.” Many agreed with my statement.

I headed home feeling much better and with a strong desire to write. However, as I walked in the door the phone rang and the call was from New York. I was told about a healer named Winefred Wager, who I’m supposed to call tomorrow to see if she can help me “long distance!” I also had a message from Dean Ornish, but I haven’t spoken with him yet. He is starting a prostate cancer study with Dr. Carroll.

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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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Pissing Contest

February 5, 1997 – Pissing Contest

M. L. T. picked up J. so that we could meet with Dr. Peter Carroll, the Oncological Urologist that everyone said was the best in the Bay Area. L. C. met us at the U. C. Medical Center in his office. After a brief case history and yet another prostate exam, Dr. Carroll once again explained the standard of treatment for bladder cancer: radical cystectomy. We were encouraged by his some two hundred bladder removals and eighty urinary diversion operations. We felt that this was the man to do any cutting, if any was to be done. We asked him all the questions in Appendix 3. We left there feeling confident that Dr. Carroll could handle any surgery that I might need.

Later that afternoon, I saw my therapist, Suzanne Schmidt for the first time since November. She was going through some radical changes in healing herself, which included almost daily visits to Yokey Kim. We started a new therapy involving self-massage of the chakras (seven energy points within the body described by Indian yogis) and the mental and emotional pain associated with them. We were quite in synch during the whole session, which lasted over two hours. We seemed to be healing each other, but I still did not get a clear idea of how to treat my bladder cancer. I left her house feeling very good!

Suzanne had recommended that I try to see Kim every day, if possible, so when I got home I called him. He said that I could come in at 6:00 P. M., which I did. The second treatment was better than the first, in that I was more relaxed and knew what to expect.

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