Hyperbaric Oxygen Therapy

Thirteen years ago, Michael Broffman told me about hyperbaric oxygen therapy. At that time, it was available in Europe, but now it is available locally. I had previously experienced a session with Dr. Geoffry Saft of Hyperbaric Oxygen Therapy in Larkspur, CA. Now I am getting treatments in preparation for BCG.

Today’s experience was quite wonderful. I was relaxed and probably slept a bit. The rest of the time I listened to Jon Kabat-Zinn, founder of Mindfulness Based Stress Reduction at the University of Massachusetts. I’ll probably have a treatment every day until the BCG treatments start, and maybe until they end!

Hyperbaric oxygen therapy works by sending oxygen under pressure into the blood stream. The research of Dr. Otto Warburg had proved that oxygen starved cells are more likely to develop cancer than those which have plenty of oxygen. So the theory is that oxygen at higher than atmospheric pressures can facilitate blood flow to the cells.

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Less Good News

I had my meeting with Dr. Neuwirth this afternoon. The news was not that good. The two polyps were actual T1 tumors, which he removed during the TURBT last week. The good news is that BCG treatments should be quite effective against further tumors. The bad news is that it is my bladder that has to undergo these treatments. Dr. Neuwirth seemed hopeful, however. I start the BCG treatments in two weeks and I have to go once a week for six weeks.

BCG (Bacillus Calmette-Guerin) is a bacterial preparation of a strain of tuberculosis vaccine.  It is instilled in the bladder with a catheter and needs to remain there at least two hours. The last instillation in 1998 lasted 12 years. So if this works as well as the list time, I’ll be 82!

I felt like I had just lost an important tennis match – kind of down and low energy. Fortunately, Lady Catherine (my daughter’s best friend) came for dinner and took a lot of the sting out of the news. After she left, I spoke with Mala and the girls and could feel their love and concern. Their reaction was surprisingly calm, as they have a lot of love for me and know that my mindfulness practices and integrative medicine with get me through.

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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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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.

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Shipley: The Bladder Saving Guru

February 1, 1997: Shipley: The Bladder Saving Guru

Early Saturday morning, I received a phone call from Dr. Shipley, which we almost missed!!! However, since I already had his office number, I called back immediately, and the nurse relayed the message to him, for he called back a few minutes later.

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The conversation revolved around likely candidates for the Shipley approach, which combines chemotherapy and radiation therapy in an effort to save the bladder. He explained how his protocol involved four weeks of chemotherapy combined with radiation, followed by four weeks off. At the end of the second four week period, a cystoscopy is performed to look for the presence of tumors. If tumors are found, the radical cystectomy is recommended. If none are found, another four weeks of chemotherapy and radiation are applied and the bladder is followed up with cystoscopy examinations every three to four months. Subsequent local superficial growths are handled with intravesical chemotherapy using BCG or mitomycin, in which the chemotherapeutic agents are instilled directly in the bladder.

Dr. Shipley discussed how they like to work with patients who have had all the tumor removed with TURBT, as his success rate increases when this is the case. As I wasn’t sure if Dr. Neuwirth had resected all of the tumor, my hopes were a bit dimmed. He even mentioned that they sometimes use cystoscopy and transurethral resection two or three times to make sure they got all of the tumor.

This conversation gave me some hope. He even stated that I could come to Boston for a consultation with himself, along with Dr. Kaufman and Dr. Heney. Shipley referred to Marin General Hospital as, “The other ‘MGH’!” and mentioned the names of Dr. Francine Halberg and Dr. Patrick Bennett. Dr. Bennett had trained with Dr. Shipley and his team of oncologists and urologists and Shipley regards him as his protégé. So the next obvious thing was to speak with Dr. Bennett.

I had originally phoned Dr. Bennett when he was on call just after my surgery to ask him what to do about my back pain. He was quite helpful then, and during the conversation I had with him after speaking with Shipley he was also very nice and understanding. He told me what I already knew about the Shipley approach in that it worked best with all of the cancer resected, but that he would have to discuss my case with Dr. Neuwirth.

This was the day of many visitors and phone calls from well-wishers. For example, J. D. brought us dinner from Kitty’s place and brought me a copy of Andy Weil’s book, Spontaneous Healing, which I have been reading ever since. Late in the evening, Dr. Rossman phoned me to tell me that he had spoken with Dr. Gullion, Dr. Keith Block (from Evanston, IL), and John Boik, author of an excellent book on cancer research and alternatives.