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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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.

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Moon Set Over Corte Madera Creek

I was invited to play tennis with some of my favorite players this morning, but by ten o’clock, one person did not show up and the other person left without checking out the situation. I was rallying with the fourth person and someone he had found to hit with until the whole group was there. But just rallying like that is still to strenuous for me, and so I decided to attend the Feldenkrais class in Tiburon. This turned out to be a good choice because my back and knees were starting to hurt and the Feldenkrais lesson help remove the tension.

In afternoon, I went to a session with Leslie Davenport. I had been feeling jittery all day for unknown reasons, and Leslie help me relieve the tension. In the guided imagery, I felt myself return to mindfulness and I experienced a great sense of peace as I left her office.

Since it was too late to go home for dinner and get back to Marin General for Anna Halprin’s class I invited B. F. to meet me at Pacific Cafe for dinner. After dinner, we went to the class taught by Liz Damtsey and Julie Emden. The focus of the class was different from all of the other classes, but it was definitely a refreshing change. We spent about thirty minutes talking about the pros and cons of body work in the context of our class situation, and finally, after a demonstration by out two leaders, we all agreed to give it a try. It turned out to be magnificent! I partnered with B. F., and we really connected quite well.

The massage began on the occipital part of the neck where the neck meets the head. We moved from there to massaging the scalp. Next, we placed our palms over the eyes of our partner and began massaging the face, cheeks and jaws. Next we placed our hand on the top of the chest, and just left them there for a few moments. From there, we moved to one shoulder, which we simply raised and lowered at the scapula. Then we worked on the arm by stretching it, and moving the joints of the wrists, elbows, and shoulders. After doing the other shoulder and arm, we began working on one of the legs. First we pulled the leg gently, and rotated it in the hip socket. Then we moved the foot to a standing position near the other knee. We lifted the leg at the knee and gently moved it towards the chest. After testing just how far we could go, we pressed on. Next we rotated the leg at the knee to loosen up the hip joint. We finished with the first leg by massaging the feet and then stroking the entire leg. After doing the same procedure on the second leg, we ended the session by placing our palms on the soles of the feet.

I felt that it was equally good to give as to receive. I enjoyed working with B. F., because she was really loose and trusting. This inspired me to be loose and trusting also.

We then did a quick drawing of whatever images came to us during the massage. I drew a picture of one person giving a massage to another in such a way that the giver and receiver couldn’t be distinguished. They had merged and become one in the process. At this point, it is a bare sketch, and would not photograph to well for this page.

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