My Room With a View

China Beach, Point Lobos Reserve

This year began with a cystoscopy on January 25, the 21st anniversary of the onset of bladder cancer. My kidney function showed some signs of stress but my doctor decided to ignore them.

Then in February, I began to lose interest in food. I remember two incidents, each occurring on a Friday night when we were out to dinner with friends. We were at a French restaurant and I couldn’t decide what to eat, even though there were plenty of items of interest on the menu. The month before, I wouldn’t have had a problem with what to eat, but on those nights, nothing appealed to me. Nothing! I managed to select something that I could tolerate, but they lacked taste.

Two weeks later I landed in the hospital with kidney failure. The only way to save my kidneys was to install nephroscopy tubes in each kidney to drain the accumulated liquid and allow the kidneys time to repair. It appears that the cancer in my bladder blocked the ureters and caused the kidneys to fail. Stents were placed in the ureters to help the flow of fluids to the bladder.

I unwittingly took the medications they gave me for kidney pain. They gave me tramadol, which is an addictive narcotic. This caused my whole gastric system to back up from my esophagus all the way down. I couldn’t fit any food in my stomach so I had to take very small meals frequently. The gastroenterologist put me on another medication that seemed to help the problem, but it took until July for the problem to ease off.

In the meantime, I began immunotherapy with Keytruda (Pembrolizumab). This happens every three weeks at the infusion center at UCSF. The good news is that it seems to be working against the cancer.

Then another thing happened. Because of the tubes and the stents, I developed a vigorous bacteria in my urological system called pseudomonas. This caused me to be in the hospital three more time, twice in August and once in November because the bacteria could only be treated by strong intervenous antibiotics.

If this isn’t enough, I was talked into a flu shot a couple of weeks ago by my doctors and my wife and I had a very bad response to it. Supposedly, the immunotherapy energized my immune system to attack the vaccine and I was ill for about a week.

And there is more…

Now things are leveling out and I’m starting to feel better. My meditation practices, my Mindfulness In Healing meditation group, my walking instead of tennis, my family and friends have helped me be present for everything that has happened. I count the days when I’ve been really down on one pinky finger.

So you may be wondering, why I am writing this article. A few days ago, I had a lucid dream that I was to create a comprehensive cancer resource guide so I want to alert you to the fact that I am working on a cancer resource guide as part of this website. The guide will have information about books, recordings, health providers, alternative treatments, off-label or creative ideas and much more.

In my original site in 1997, I had the beginning of a cancer resource guide which I have reproduced with a small amount of additions as a starting point. It will be changed to a searchable database as I progress through this project. Your comments and questions are certainly welcome.


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!

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Another Year Has Passed

More than a year has passed since my last entry.  I must say that 1998 was much better than 1997.  I had cystoscopies in January, April, June, and November, and they were all normal – i. e., no cancer.  I am now on a four month schedule for cystoscopies.

As far as the rest of my recovery is concerned, I continue to follow the directions of Michael Broffman as far as herbs, vitamins, and other suplements are concerned.  I don’t want to underestimate the effect of these supplements.  I believe they are helping my body to cope with the foreign toxins that were introduced all of 1997.

I continue to play tennis and practice walking meditation.  Once in a while, I got to Anna Halprin‘s class, but not as much as I’d like.  I’ve dropped out of the other support groups I was attending.  My family and friends continue to be my first line of support.  It’s pretty amazing that I’ve come out of this with such a clean skin!

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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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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.

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The Day of Reckoning!

This morning, I had a powerful and healing massage from Gail Teehan in preparation for my cystoscopic examination this afternoon.  Gail was really on today with her energy work as well as her massage technique.  I think she gets better with each treatment.

In spite of this, I faced the cystoscopy with great fear of the unknown, and my fears were merely based on wrong perceptions on what actually occurred.  The nurse inserted a local anesthetic in my penis and ten minutes later, Dr. Neuwirth inserted the cystoscope.  The cystoscope consisted of a light through which he could see into the bladder, and channels for flushing fluids through.  The good news is that he did not see any visible cancer, but the wash had to be sent off to the lab for a cytology examination.  We’ll know the results by Monday.

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“Pain, Love, and Happiness”

On Labor Day, I drove down to the University of California at Santa Barbara with Nancy Aberle, Gail Teehan’s friend from the Feldenkrais for a six day retreat with Thich Nhat Hanh.  We made the trip in about six and one-half hours, and enjoyed getting to know one another.  I imagine that she is a wonderful Feldenkrais teacher.

I was truly amazed at the turn out for the retreat, and how well organized it was for so many people.  I was placed in a dorm with an 85 year old gentleman, J. G. from Laguna Beach.  He was truly marvelous the whole six days.  It was wonderful to see a wealthy old Jew be so taken by Thay (a nickname for Thich Nhat Hanh).

Our meals were taken in silence in large tents set up by the dorm.  The food was strict vegetarian for the entire six days, and it was remarkably good.  I think I might have even gained three or four pounds!

The days began with walking meditation with Thay to and along the beach that runs at the edge of the campus.  With each step, there is one inhalation and one exhalation.  Naturally, I used “healthy…, free…” the whole time.  After about thirty minutes of walking, Thay would sit on a dune practicing sitting meditation for about twenty minutes, and we would all join him.  Then we would walk back to the central part of the retreat in the same manner as we walked to the beach.  On Wednesday, Thursday, and Friday, I walked and sat with three feet of Thay during the period of walking meditation.

After breakfast, there was always a dharma talk – a talk about the teaching of Buddha and the practical application of them in a life of engaged Buddhism.  I was familiar with about ninety per cent of what he spoke about, but the look on his face, the excitement in his voice, and the presence of his being are well worth the time spent.

Following Thay’s talk, one of the monks or nuns led us in mindful movements, which I later learned are related to qi gong.  I was especially interested in them because of my workshop plans with Gail Teehan on “Mindfulness and ART in Healing.”

The schedule called for sitting meditation after the dharma talk, but it usually changed because of an extra long talk or other events.  When I sat, I noticed that I was not obsessing about next week’s diagnostic tests – a biopsy of a mass in my thigh, and a cystoscopy.  I found myself able to maintain a degree of mindfulness that kept me pretty much in tune with the present moment.

The afternoons were filled with special interest groups, dharma discussions, and supposedly a period of sitting meditation.  I attended a special interest group on death and dying led by Joan Halifax, Ph. D.  Joan is an ordained Zen teacher in the line of Thich Nhat Hanh, Seung Sahn, and Bernie Glassman Roshi.  She is the founder of Upaya and resides in Santa Fe, New Mexico.  The first time we met, she spoke about being with the dying person without trying to fix them.  If they were open to teachings about mindfulness, we should speak with them, otherwise, we should just be there with our mindfulness engaged in “loving speech and deep listening.”  The next morning, I had a private interview with Joan.  I wanted to discuss my practice as it related to healing the cancer that was in my body.  I could tell that she was deeply moved by my story, and she had me tell it again to a small group of her special interest group in the afternoon.

Following the special interest groups, there were dharma discussions.  The first day, we had a tea ceremony, which was lovely.  The other days, we spoke about Thay’s dharma talk, the “Five Mindfulness Trainings“, and other topics which people brought up.  I found myself speaking a lot and sharing my story with this group also.  We seemed to get very close in a matter of hours.  I expect to continue my friendship with several of the people I met in my dharma discussion group.

The schedule called for sitting meditation after the dharma discussion groups.  One afternoon, the thirty-four monks and nuns that were traveling with Thay from Plum Village were invited to demonstrate some of the chanting they do in their practice.  The chanting was so wonderful.  It seemed as if they all had wonderful voices.  Thay, himself, introduced us to many of the monks and nuns.

On that same afternoon, Nancy came to visit me.  After the chanting, we took a walk on the beach and I talked her into staying for dinner.  She did not stay for the evening program.

The evening programs were varied and wonderful.  Monday night, Thay gave an introductory dharma talk.  Tuesday night, Sister Chan Khong offered “Five Earth Touchings”.  The five earth touchings consisted of acknowledging our physical ancestry, and our spiritual ancestry, along with honoring the ancestors who made freedom possible in our corner of the world.  The final two touchings were to people we love the most and people we love the least.  I was moved to tears by most of this experience.

I spoke with Sister Chan Khong the next day before lunch about the “Five Earth Touchings”.  I also told her about my illness and how I used mindfulness as a healing tool.  She shared with me two stories about people who also used mindfulness with their illnesses.  I then told her about “healthy cells grow all by themselves,” and she said, “With your wisdom and Thay’s teachings, you are going to be fine.”

On Wednesday evening, there was a presentation of the Five Mindfulness Trainings offered by several people in the Order of Interbeing.  I found this quite helpful, as I planed to take them along with the three refuges of the Buddha, the Dharma (teachings), and the Sangha (group of people in the practice of the dharma).  In other Buddhist traditions, the Five Mindfulness Trainings are known as the Five Precepts for lay people practicing Buddhist meditation.  I am going to try to get permission to put the text of Thay’s Five Mindfulness Trainings on this site, but for now, I’ll simply summarize the intent of each one.

  1. Respect for life – non-killing
  2. Respect for property – non-stealing
  3. Avoidance of sexual misconduct
  4. Respect for others – loving speech and deep listening – telling the truth
  5. Avoidance of intoxicants – drugs, alcohol, certain TV programs, etc.

I have been practicing most of these precepts already, and the formal presentation was quite interesting.  I took all five mindfulness trainings on Saturday morning when they were offered by Thay.

On Thursday evening, Sister Chan Khong presented the “Three Prostrations”.  These involved our relationship to time, space, and the whole stream of life.  Once again, I was deeply moved.

The last night consisted of questions from the sangha and answers from Thay.  He responded spontaneously to many wonderful questions.

The whole retreat reminded me of Thay’s description of the life of the Buddha in Old Path White Clouds. The walking meditations suggested Buddha’s travels in what is now India and Nepal.  He walked everywhere with a sangha of about 1500 bhikkhus and lay people.  The silent meals reminded me of how the bhikkhus would beg for food in the villages and towns and return to the forest to eat their meals together.

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Old Path White Clouds: Walking in the Footsteps of the Buddha
My Favorite Book

Moxibustion

Today was another day of healing. I spent the morning working, but then went to see Marty Rossman at 1:15 for acupuncture and Dr. Halberg at 3:00 for a follow-up visit. The emotional impact of the acupuncture treatment was unsuspected. I have had acupuncture before, but today I really felt the presence of someone who I know loves me as well. He worked on the kidney meridian with needles for just a short time and then he applied moxibustion to the same meridians. Moxibustion is “the burning on the skin of the herb moxa.” In these days, they have sticky ends that you place on the meridians. Marty gave me a week’s supply so that I could apply the moxibustion to myself in between visits.

We had to wait an hour to see Dr. Halberg, but it was not so bad except for the fact that I had to reschedule my eye exam. She was her kind, caring self, in spite of being an hour behind schedule. I felt that she really paid attention to my physical and emotional needs, as I try to understand the effect healing on my life. She didn’t think anything of the lump I discovered last Friday, and said that it should be watched. She outlined my program for continued treatment, which consists of a chest X-Ray, complete blood count and blood chemistry, and cystoscopy every three months for the first year, every four months for the second year and every six months for the third through sixth year. I feel comfortable with this schedule, and the first thing I have to do is get the X-Ray, probably Thursday.

In the evening, my wife and I attended our respective groups at the Center for Attitudinal Healing. I was very touched by the stories people told, and I guess that’s why I keep coming back. I spoke mostly about how much love was coming into my life and how much difficulty my wife is having with being my primary care taker. The latter idea was picked up by some of the other members of the group. I really felt a lot of compassion for care givers. Remember, I was in that role when my son was sick 21 years ago!

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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.

phone-booth-758924_1280

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.

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