Let The Treatment Begin

On January 31, 2014, we met with Dr. Gullion. Remember, he is the oncologist who wears a heart pin on his shirt.

It was a bitter-sweet meeting, as both of us hoped I was cured.

Anyway, we discussed my situation and decided to begin treatment on February 5.

With Susan’s advice, I decided to have acupuncture with Dr. Marty Rossman each day before the chemo infusion. I am responding well to these treatments.

The first day of chemo on February 5, 2014 lasted 7.5 hours! I had cisplatin,  gemcitabine, and lots of anti-nausea drugs.

I spent the first hour meditating and then began the process of hydrating myself to minimize the effect of the chemotherapy agents.

I was visited by friends and even took a couple of walks around the atrium of the building.

All in all, things went quite well, except at night. Because of the dexamethasone in the drip – one of the anti-nausea drugs, I was up all night. I meditated. I wrote. I read. I did everything but sleep. Weird!

The herbs and supplements recommended by Michael Broffman arrived by special messenger (Carolyn) and I begen taking them with the kitchari Rachael had made.


Chemotherapy Options

On January 16 and 27, 2014, we met with Dr. Charles Ryan and his fellow, Dr. Adam Siegel.

Adam gathered a lot of information, entered it into the computer and then brought in Dr. Ryan.

At first, Dr. Ryan thought I would benefit from neoadjuvant chemotherapy and even recommend a plan. Upon further review, he decided to send my case to a tumor board to get its recommendation.

The tumor board met on January 17 and it was unanimous that I needed my bladder taken out. There were eight members on the tumor board and four of them were oncologists like Dr. Ryan. He was out of town, so the case was presented by Dr. Siegel. All four of the oncologists recommended neoadjuvant chemotherapy.

The second meeting with Dr. Ryan was challenging and took place on January 27, 2014. The chemotherapy plan suggested by the tumor board consisted of four cycles of chemotherapy, each four weeks.

Dr. Ryan corrected the plan to four cycles of chemotherapy, each three weeks. Cispltain and gemcitabine are to be administered on the first day of each cycle, along with anti-nausea medications, gemcitabine with anti-nausea drugs on the eighth day, and then a week off. Yay! I had cisplatin 17 years ago along with 5FU.

When they told me I was scheduled to start on January 30, I balked. I could not imagine fighting rush hour traffic to get to UCSF by 9:00 in the morning, have to park, and be there all day.

I suggested that I talk to Dr. Gullion about administering the treatment close to home, and they accepted my suggestion. I had already scheduled an appointment with him for January 31.


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.


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.


An Unhappy Birthday to Me!

Today I turned 58, but what a miserable day it was.  As you may know, last Friday I had my cystoscopy and biopsy under anesthesia at Marin General Hospital.  The results were not favorable, but also not so bad.  There was some microscopic cancer still on the bladder wall, but Dr. Neuwirth thought that it could be removed with one or two six week treatments of BCG.  The cancer was down to grade I or II, so, all in all, it is slowly going out of my system.  The BCG treatments start next Wednesday.

This morning, we went to the University of California at San Francisco (UCSF) to meet with Dr. Norton about the schwannoma.  I expected a forty-five minute visit followed by a nice lunch at the Cliff House and a stroll through the de Young Museum or the Palace of the Legion of Honor.  This would have been a lovely way to spend my 58th birthday, but Dr. Norton changed all my plans.  He wanted to remove the schwannoma on Friday – the day after tomorrow!  Dr. Gullion supported his plan, and it seemed reasonable based on getting that thing out of my leg before the BCG treatments begin.  I was in a state of shock about the urgency in his analysis of my problems.  He went so far as to say that the lipoma on my left shoulder blade should also come out.  So I spent the rest of the day registering for the surgery on Friday.

I was a bit disappointed because I had worked so hard to get appointments with neurosurgeons next Monday.  I thought that because the schwannoma was a nerve sheath tumor, it should be removed by a neurosurgeon.  Dr. Gullion did not share my ideas about the neurosurgeon.  He thought that Dr. Norton was better because he understood the oncology.  Dr. Norton has done many of these, so I feel confident in him, but the schwannoma will be gone before I have a chance to see the other surgeons.


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.


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.


The Healer’s Healer

I had four remarkable experiences today! The first was sending off my wife and my younger daughter for a day by themselves, and they didn’t know where they were going or when they would be back. It turns out that they spent the night in Gualala, on the Pacific Coast.

The second thing that happened gave me the most pleasure! I went to see Gail Teehan for a Feldenkrais lesson. She began working on me and paused a few times without explanation. I asked her what was wrong, and found out that her right shoulder was hurting her and she had difficulty working. I asked her to trade places and proceeded to do a “zero balancing” treatment on her. I spent quit a bit of time with the treatment, and she was healed to the extent that she could continue working the rest of the day without a problem.

The third thing occurred during my visit to Dr. Gullion. I think he felt a little hurt that I didn’t include him in my list of healers in the article, but I explained that I was just writing about “alternative” healers. So maybe I ought to write a letter to the editor to explain my lack of mention of the physicians that supported me during the Shipley protocol. He also mentioned that I was doing very well and didn’t need to come back for three months!

Finally, I felt very sad at the Center for Attitudinal Healing because we lost another member. It was someone I liked a lot, and was just getting to know. Several other people were experiencing great difficulties. It was such a heavy night that the good news that I had to share lacked the spark that I wanted to offer to help healing. However, many people were very pleased with the article.


No Pot stickers for my Chop Sticks

Today I’m back to healing. I went to see Gail Teehan this morning and spent about an hour teaching her how to do a mind story. Then I thought I was scheduled in for a Feldenkrais Functional Integration lesson, but it turned out to be an hour and a half massage, and was it wonderful. It took me a little by surprise to have the massage, but she did such a good job, I didn’t mind! I remember crying several times, as she was working on my shoulders, and she said that she felt that all of the poisons are out of my system at last. We then had lunch together in the shopping center at a Chinese restaurant.

Next, I went to see Leslie Davenport. While I was waiting to see her, I managed to get a little work done. The session with her was so fine! I seem to come out of there with profound insights and a lot of wisdom. She really validated my use of mindfulness in my healing process. I am really fortunate to have three such remarkable healers in my life who I love very much. Of course I’m referring to Gail, Leslie, and Anna Halprin, who is getting a life-time achievement award for choreography at Duke University as I write. I’m grateful for my physicians, Drs. Neuwirth, Gullion, and Halberg, and I feel that they were wonderful technicians who implemented a protocol that I found in my own research. But I really feel that a lot of my physical healing and all of my mental and emotional healing  has come through the hands of Gail, Leslie, and Anna.


The Last Day of Treatment!

Today, I complete the Shipley bladder sparing protocol. Once again, I choose to spend the day resting in the examination room. It was uneventful, except for the lovely visit of A. M. Now it’s time to get in bed again until my final radiation treatment at 5:00 P.M. Then it’s time to celebrate, but I won’t do so until I recover from the chemotherapy and radiation. When I completed that last radiation treatment, I received a diploma for a job well done signed by all of the staff, but not the doctors.

I gave Dr. Gullion and Dr. Halberg copies of Yellow Stream and asked for their comments about the protocol and my response to it. If their writings are not too delayed and contain some valuable information, I’d like to include them as an appendix to Yellow Stream.