Yellow Stream
A Cancer Diary
by Jerome Freedman, Ph. D.

Epilog

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1/25/98: 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.

2/5/98: HealthyWay Award!

Less than two weeks later, I received the following email from HealthyWay:

2/22/98: Lessons Learned

To conclude 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 making 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.

3/26/00: Two Years Later

On January 19, 2000, I had a cystoscopy which resulted in atypical cells in the wash. However, I did not find out about this until several weeks later because I went to India on business and then to France for vacation. While in France, I went to Plum Village, where Thich Nhat Hanh (lovingly call Thay - beloved teacher) lives for most of the year. Plum Village consists of three hamlets: Upper Hamlet, where monks live; Lower Hamlet, where nuns live; and New Hamlet, also where nuns live and guests stay.

In India, I trained programmers at Cybermedia and visited the Osho Commune. This is a place where I had been in 1975! There were a lot of changes to the grounds of the ashram, but, even though Osho died, the atmosphere wasn't very different from 1975. My wife had been there as late as 1978. If you go there, you'll find lovely grounds and gardens, and workshops on just about any spiritual, psychological, or physical discipline you wish! I found it very much fun and enjoyed the food there so much.

Plum Village was another story. I arrived there during the Tet celebration of the Lunar New Year. The monks and nuns were immediately hospitable and welcomed me with open arms. The next several days were filled with feasting, consulting of the oracle, visiting the rooms of the monks and nuns, and talks by Thich Nhat Hanh. I found Plum Village to be one of the richest spiritual experiences of my life. I have such great respect for the sangha (community of monks and nuns) and this brought me even closer to Thich Nhat Hanh.

During one of the oracle readings, Thay spoke about how someone who thought they had cancer could be having a wrong perception and therefore talk themselves into the disease. After the session completed, I approached Thay with the question I had about my friend who was suffering with glioblastoma - the worst form of brain cancer. We took each other's hands and Thay said to me, "Perhaps you can consult the oracle!" Little did I know that the results of my cystoscopy were not negative.

A little while later, in the room of the abbess of Lower Hamlet, one of the senior monks answered the question for me. He said that the person should live her life as fully as possible in each moment. Five weeks after I returned home, my friend passed away. On the afternoon before her passing, she went out to lunch with her daughter. She fully lived up to the monk's response.

When I got home from my travels, my wife told me about the results of the cystoscopy. I went into a mild depression, knowing that I asked Thay about my friend, when, perhaps, I should have asked about myself! I wasn't ready to deal with a recurrence. Is anyone ever? On Wednesday, March 1, 2000, I went into the hospital for a biopsy under surgery, as recommended by Dr. Neuwirth. Two days later, I found out that all the tests were negative. I could breath a sigh of relief!

11/26/03: Update through 2003

I am looking over the website today and correcting any broken links. I thought I would take this opportunity to record my progress over the past three years.

All of my children are home for Thanksgiving and it is wonderful to have everyone here. Micah lives in New York City is doing quite well. Rachael lives in San Diego and is in her third year of college. She is studying architecture, which she has been talking about since she was seven!. Jessica is in Eugene, Oregon, where she studies journalism.

All of my health reports have been outstanding since the last entry. I had an MRI last April, but it was negative. Other than this, there hasn't even been a scare. Many consider that I have been cured.

In October, 2002, I was laid off from Network Associates. After my trip to India in 2000 (see above), I proceeded to train around three dozen Indian programmers in Dallas. Network Associates subsequently opened an R&D center in Bangalor and eliminated my job.

I almost immediately got a job at WildPackets, doing basically the same kind of work with network protocols. When Bush went into Iraq, WildPackets had many cancellations and so they cancelled my job. I've been working on packet analysis for NetPredict since September, 2000, but they are also struggling. I guess the most significant project I've been working on is the website for Jewels by Mala. The site is based on osCommerce, and I like the results. Please let me know what you think.

01/26/04: Seven Years Have Passed!

Seven years have passed since I presented at Marin General Hospital with blood in my urine. These have been interesting times in my life. My kids are now grown and off to college.

I was laid off from WildPackets in April, and haven't had a steady job since then. I've been working on several consulting projects and developing Jewels by Mala with my wife. The website is launched, but sales are slow.

Unfortunately, most of the information on this site is now 5-7 years old. I am considering doing more research in bladder cancer when I have the time, but this website should provide you with a guide to how to do the research yourself. We still think Michael Broffman has many good answers, and continue to direct people to him.

05/21/06: More than Nine Years Have Passed

Today, I begin revamping the web site by adding features that may improve the readability and access to information. I am also adding a section on books on cancer.

When I first started working on this web site, I only had done one site before The Enneagram in the Electronic Tradition. Now that I have developed Jewels By Mala, NewTerra, Jobs-Are-Us, Mountain Sangha, and MICAH Affiliates, as well as internal web sites for The Technical Committee, I have enough experience to do a better job on Yellow Stream.

In the meantime, I am experiencing excellent health. My last cystscopy was in June, 2005 and everything was good. I am experiencing no after effects of the radiation or chemotherapy, other than ease of exhaustion.

My son, Micah is living in New York and doing computer graphics and web site development. He has started a theatre company, QED Productions with a group of his friends. He produced and acted in Tom Stoppard's Arcadia last November at the Greenwich Theatre, which Mala and I attended. The group plans three productions for next season. Come if you can!

Rachael is entering her last year in architecture school at Woodbury University in San Diego, CA. She is a lovely and kind young woman with a bright future.

Jessica graduates with honors and a double major in Spanish and Journalism from the University of Oregon in three weeks. She will be teaching in Spain in the fall under the auspices of the Spanish Consulate. Mazel Tov - Jessica.

Mala is a wonderful and supporting spouse. She is doing great work with her jewelry designs.

For the past four years, I have been intimately involved with the Mountain Sangha in Mill Valley. Our sangha practices in the tradition of Thich Nhat Hanh, whom I've written about in previous chapters. Please read My Breakfast with Thay to see what happended when I visited Plum Village for the second time in March, 2006. It was a wonderful visit!

My Buddhist practice now consists of morning meditation, tennis when possible, walking meditation, and reading of Buddhist scriptures. I am an aspirant in the Order of Interbeing. I am also working towards offering a class on Mindfulness in Healing through California Cancer Care and other institutions. The class is based on my experience, which is documented in these pages.

My tennis game continues to improve. I play for Harbor Point and our team went to the divisional playoffs last month as a wild card team. My partner and I won one match, but lost two others - one in a tie break. I try to play every day that I don't have to go to Palo Alto (where my office of TheTC [see below] is located).

I now have perhaps the best work in the computer industry. I am working as a consultant to the Technical Committee (TheTC) of the Department of Justice. TheTC is chartered to monitor the compliance of Microsoft with the antitrust settlement agreement which just has been extended until 2009. Because of the work I did between September, 2004 and December, 2004, 30 engineers have jobs and we are making sure that Microsoft correctly documents their proprietary networking protocols for licensees.

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PLEASE NOTE: This material is copyright(c) 1997, by Jerome Freedman, Ph. D. All Rights Reserved. This material will be submitted for publication. This document is meant to be a description of the author's experience and he in no way takes responsibility for the accuracy or completeness of any medical knowledge. The author assumes no responsibility for choices made by any of the readers of this material.

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