In the middle of the night last night I woke up from a dream and I was lying on my left side. I noticed a somewhat painful feeling in my left thigh half way between my hip and my knee. When I felt around, I noticed a lump, and was panicked immediately. I felt for sure I had a metastasis in my leg. After feeling sorry for myself for a few minutes, I collected myself, returned to mindfulnessÃ‚Â and thought rationally about it. I hadn’t read that bladder cancer metastasizes to the soft tissue, but I was still worried. I called the hospital to leave a message for Dr. Halberg. I hardly slept the rest of the night.
In the morning, Dr. Halberg’s office called to say that she was off for the day, but they moved my follow-up appointment from July 2 up to June 24, so I’ll see her on Tuesday. In the meantime, my friend, Dr. Marty Rossman called about another matter and offered to look at the lump. I went to his office and he confirmed what I now suspected was a lipoma – a fatty tissue that is no threat to anything. I’ve had a rather large lipoma on my back for as long as I can remember, and I don’t have a clue where it came from.
I was a basket case for the rest of the day! I couldn’t work, and I could barely function. I had to take care of one of my daughters, and we met a few friends for lunch at Kitty’s Place. This was the nicest part of my day.
My wife and I went to see a production of the ballet, “A Midsummer Night’s Dream.” Our friend’s daughter danced the leading role and she looked like a professional. I was very moved by the performance as a whole.
Today, however, has been as sad day for me. I woke up feeling very vulnerable and emotional. I am a little afraid of the next round of chemotherapy and radiation, but besides that, I’m sad that my energy has not returned to its normal level. I feel physically and emotionally exhausted most of the time, even though everyone tells me how good I look. Having cancer is such a drag. I really need to pull myself together. Writing helps. Mindfulness helps, but I feel some underlying sadness now that is hard to deal with. It could be that I am just doing too much since the last surgery, but I keep thinking about my disappointments in life. I know that these feelings are impermanent and that I’ll feel better soon. Maybe after dinner!
All day I had been thinking about Thich Nhat Hanh and how I’ve used mindfulness to keep calm. At one point, I was feeling that mindfulness had kept me alive, and I started to cry. I’m planning to attend a retreat with Thich Nhat Hanh in September in Santa Barbara. I explained all this to Dr. Rossman as we drove to a restaurant in Mill Valley. As we walked in, I looked over to the wall on my left and saw Reb Anderson, former abbot of Zen Center! I spoke with him briefly about my illness and about my mindfulness meditation. I had placed his name and that of the current abbot in my Wizard at the beginning of my illness, but I have never got around to calling either one! Now the word is out.
This morning I went in for my blood work for Dr. Belknap. In addition, I had blood taken for a nutritional analysis of my blood recommended by Dr. Rossman.
Later, I went to Leslie Davenport‘s group at Marin General Hospital. Leslie did a guided imagery which evoked the four elements. She began with the earth element by having us imaging our feet grounded to the earth even through our socks, shoes, the floor of the room, and on down through the building. She continued with the water, air, and fire, building on the images we had already constructed. Upon completion of the guided imagery, we drew a picture to represent our experience. My drawing incorporated all of the elements focusing on the room in which we were meeting. The building in which the room was looked more like a safe than a building, and I remarked that we were trying to create a “safe” space with our group. Everyone laughed! The group was also quite excited about Julie Motz!
When I got home, I needed to rest, as I was expecting a visit from my ex-wife. She is visiting our son from Israel and wanted to visit me. She arrived one hour late in a broken down car and was more or less forced to spend the night! She even invited me to go to Yosemite with my son and her!
Today I have a busy schedule. I see Dr. Gullion in the morning, meet with co-workers in the early afternoon, and travel to Capitola for my son’s performance in La Boheme in the evening. We have planned to spend the night in Capitola. I have prepared a list of questions for Dr. Gullion.
Once again, Dr. Gullion showed up with a heart pin on his shirt pocket. I believe that he is quite open to what Andy Weil calls integrative medicine. We spoke about all the issues on the list and the thing that struck me the most was his willingness to allow guided imagery and massage along with chemotherapy. He said that this is what they were trying to do at the Marin Cancer Institute.
As far as Keith Block is concerned, Dr. Gullion thought that with Michael Broffman and all that I was doing, it amounts to the same thing. He said that he had always had difficulty getting Dr. Block to be specific about what he is doing, and that he had proprietary supplement preparations that no one else had. I felt confident that I was on the right path because of Michael Broffman, Marty Rossman, Van Vu, Elyse, and the combination of all the other things I am doing.
As far as the chemotherapy is concerned, he was no more worried about my response than Dr. Shipley. He had given cisplatin and 5FU together before, but not combined with radiation and not in the doses that I will be getting.
After our visit with Dr.Gullion, we headed down to Network General and then to Santa Cruz. We checked in to the Apple Lane Inn and took a nap before meeting M. and G. for dinner in Capitola before the opera. M. seemed quite relaxed in spite of having one of the leading roles in the production. I was feeling quite proud of him and also felt excited to be able to be there. You may recall that on my first visit to Dr. Neuwirth’s office when he described my illness, I wanted to be able to see La Boheme.
The performance was rather good for the first performance of a new opera company. Of course my son had the best male performance as Marcello, Rudolpho’s friend! The woman who played Mussetta was also excellent. But the orchestra and chorus left something to be desired. All in all, it was very enjoyable and I recommend it to anyone living near Santa Cruz.
My catheter was finally removed this morning with such great relief. The only bad thing about the meeting with Dr. Neuwirth was that the pathology report showed that more cancer had been resected, but this doesn’t change the treatment plan. We finally got the feeling the Dr. Neuwirth was behind us all the way with using the Shipley method.
We stopped by the Pine Street Clinic to pick up a powered form of the Traditional Chinese Medicinal herbs that Michael Broffman had prepared for me. Luckily, Michael was available for a brief conversation about the latest pathology report and Dr. Neuwirth’s attitude. He felt strongly that it was still in my best interest to proceed with the Shipley protocol.
Later in the afternoon, I received a call from Dr. Keith Block, an internist who has put together a staff of oncologists, herbal chemists, dietitians and others who offer a combined program of chemotherapy, herbs, diet, psychological support, exercise and stress management. He is a friend of Dr. Rossman and I had placed a call to him as far back as February 9. Dr. Rossman and I had several email messages going back and forth, and finally he called back.
Dr. Block told me that he had a holistic program that attacked the cancer cells at the molecular level. He uses intervenes nutrients combined with oral agents and a detoxification program to reduce the side effects of the chemotherapy. He uses fractional dosages for optimum effectiveness combined with patient comfort. The rest of his life-affirming program consists of nutrition, exercise, supplements and stress management techniques.
I really felt confused after speaking with him, as he likes to treat patients in his facility in Evanston, IL. While it is not out of the question for me to travel to Evanston (after all, I spent three years of my life in Chicago and three years of my life in Evanston!), I would be giving up all my support systems back in the Bay Area. So after an excellent guided imagery session with Leslie Davenport, a very supportive conversation with Dr. Rossman, and a good night’s sleep, I felt better about staying with the plan I already had in place.
I went into the hospital early this morning to have another TURBT procedure done by Dr. Neuwirth. I was taken into the operating room about 75 minutes early, along with Dr. Rossman’s pre surgery tape! This time, I was not given the opportunity to have an epidural. Instead, I had a general anesthetic. Luckily, I did not experience any side effects from the anesthetic.
My recovery was a little uncomfortable this time, probably because of the catheter, but maybe from the anesthetic. I was rolled up into my room about noon time and immediately started drinking. I wanted to flush out the disease from my bladder as soon as possible. In between visitors, I spent the afternoon comfortably doing “mind stories“, listening to tapes by Dr. Keith Block and Dr. Carl Simonton, and reading Love, Medicine and Miracles. Later that evening, E. M. and D. F., two of my favorite tennis partners, came by. It was so nice to speak with them about how I use tennis as a spiritual practice and introduces them to visualization and guided imagery.
My wife is very clever! She talked Dr. Neuwirth into letting me spend the night in the hospital, which is not normally done after a TURBT. I was grateful for the overnight stay because I don’t have to deal with a catheter until Tuesday.
In the morning, I spoke with Dr. Gullion over the phone and told him that I wanted to follow the Shipley treatment precisely. He said it would be no problem. I also spoke with him about Michael Broffman’s protocol. While he cautioned me about taking antioxidants during the first several days of chemotherapy, he was willing to cooperate. I explained to him that Michael had broken the protocol down into three parts, as described above, and he seemed to feel better about that.
In the afternoon, I had a guided imagery session with Dr. Martin Rossman. The session followed a discussion about my treatment options and the one I selected. Marty had been following my choices since day one, so he was familiar with what I was going through. He thought that I made the right decision, and that I had a lot of additional things going for me.
The guided imagery session was extremely relaxing. It encouraged me to experience reality based anchoring in my body, which I did in a big way. I contacted my “inner advisor” and got in touch with a sense of deep spirituality. From the vantage point of a grove of trees in Point Lobos State Reserve, I was able to feel my connection with the earth and really felt good. My illness seemed thousands of miles away, as I was able to ground myself in what I was experiencing in the moment. I felt that for me, a strong sense of integrity is directly connected with listening to my body and acting accordingly.
As deep as the session with Marty had taken me, I became confused after taking a long walk and picking up the kids from school. After speaking with my wife about the events of the day, I was experiencing a lot of pressure to begin the therapy as soon as possible – like February 17, when I had it in my mind to begin February 24. I decided to take the evening off and watch public television which portrayed the magnificent engineering accomplishments at Stonehenge and of the Incas.
Finally, one of my girls was recovered from the horrible virus that has struck our community, but we still had the other one at home. Having the girls around makes strategic conversations a little difficult. However, we were scheduled into Dr. Gullion this morning and I got T. W. from my conscious evolution group to stay with J. J. and L. once again consented to be present at the consultation with us.
We sat down with Dr. Gullion and he was wearing a pin shaped like a heart over his pocket. He was tall and had a very welcoming smile. However, due to the seriousness of my illness, he was a bit serious himself. He sent the others out of the room for a few minutes while he examined me.
When the others returned to the room, he asked me what was wrong (as if he didn’t know) and I explained that I had a stage four bladder cancer that was highly active along with carcinoma in situ and some dysplasia and atypia cells. He was impressed with my understanding, and proceeded to write out my diagnosis and treatment alternatives “Patient Communication Sheet.”
Chemotherapy – MCV x 2 cycles followed by radiation: 4000 rads with cisplatin (2 cycles). Then re-evaluate with cystoscopy and biopsy. If (-) – radiation – close follow-up. If (+) – surgery.
While this was slightly different than the Shipley protocol as I understood it, I could see that he had done his homework after speaking with Dr. Rossman.
We continued to ask questions (see Appendix 2, available on request), and left with the feeling that radical cystectomy was the way to go. We discussed both options with J. and L. over lunch. During that time, I decided to go to their house with them in order to use their Jacuzzi bathtub. As we passed the tennis courts, I was filled with grief, as I surely would rather be playing tennis. That night I was starting to come down with a cold, which my wife treated homeopathically.
The next morning, I had a very interesting conversation with Dr. Huang about Shipley. She was quite impressed that I not only tracked Shipley down, but that I actually spoke with him. I had faxed a copy of the pathology report the day before. She had always been a proponent of the Shipley method in my case, but now, armed with the pathology report, she was even more confident. She even recommended that I make the trip to Boston to consult with Shipley and his team.
Later that morning, Dr. Rossman came by with John Boik’s book. We spoke a bit about the options, be Dr. Rossman has a habit of throwing decisions back on people, with expressions such as, “What do you think?”
That day was filled with many visitors and phone calls. One phone call that I made was to P. F. We had been to her birthday party on the night the “Red River” started to flow, and I know that P. was involved with a Russian healer. During the conversation, she gave me Nicholi’s phone number and I set up and appointment with him for the next Tuesday. More about this man later.