Tag: bladder cancer

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Mindfulness In Healing Sangha Celebrates 10 Years of Continuous Practice

We are extremely happy to announce the tenth anniversary of our Mindfulness In Healing sangha on Wednesday, June 19, 2019. The sangha was founded by Jerome Freedman, Ph. D. on the summer solstice in 2009 as a means to give back to his community after being in remission from bladder cancer which began in 1997 and flared up in 2003. After four or five more bouts of bladder cancer, he is now cancer free once again, thanks to immunotherapy.

The sangha has consistently met at the Pine Street Clinic in San Anselmo (Marin County, California) on Wednesday nights. We are totally grateful to Michael Broffman and the Pine Street Clinic for letting us use their facility for the past 10 years. The clinic is famous for their research on dogs sniffing ovarian and uterine cancers.

Soon after forming the sangha, Jerome invited Carolyn de Fay, LCSW to join as a co-facilitator so that we could hold sangha when one of us was indisposed. We have been facilitating together most of the time.

Our practice begins with inviting the bell followed by an invocation and thirty minutes of sitting meditation. This is followed by tea breaks and the evening program, which consists of dharma sharing, dharma discussions and / or dharma teachings by Jerome or Carolyn. We end with the dedication of merit.

Vivian Taube joined the sangha in 2014, as a regular member. She is grateful for a sangha, where she can discuss her healing from schizoaffective disorder openly, as the sangha’s original intent was to support people and care givers in their healing process.  In 2017, she decided to aspire to the Order of Interbeing, and she chose Jerome and Carolyn as two of her OI mentors. 

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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.


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Stop Cancer Introduction

Lying still,
Breathing in, breathing out,
Healthy cells grow all by themselves.
I am free of cancer!

white-blood-cell-543471_1280This Zen poem came to me during my guided imagery session on the day of the Vernal Equinox, 1997. It represents the theme of this category (Stop Cancer): Healthy Cells Grow All By Themselves. We have to be willing to allow our bodies to heal themselves by paying attention to our healing process, by paying attention to our breathing. We have to live moment by moment.

This category is devoted to cancer patients in general and bladder cancer patients in particular. It traces the symptoms and diagnosis of my bladder cancer from the onset of symptoms to Father’s Day, 1997 and beyond. It is given in frequent articles in diary format so that other sufferers of the disease or any other disease can make use of my experience in whatever way is beneficial to them. Hopefully, my readers will be inspired to take an active role in their own recovery and be willing to participate in their own healing, rather than being at the mercy of the surgeon’s knife. There is a considerable body of evidence that patients who have a positive mental attitude and engage in their own treatment have much better chance of long term survival.

Not everyone will want to do the amount of research I’ve done to find out about my disease, but if you do, the articles in Stop Cancer should give you a good idea of where to start and what resources are available to help you participate in your on healing. I have incorporated a lot of alternative medicine and spiritual practices in my recovery, and I hope to inspire you to do the same.

There are a few bits of background information that you should know in order to understand my motivation for doing this in the way that it is being done. First of all, I was a 57 year old male living in Marin County, California, one of the best places to live in the world, both from a pure aesthetic point of view, and because of its access to medical resources. The University of California at San Francisco Medical Center is just across the Golden Gate Bridge, and Stanford University Hospital is only fifty miles away. Furthermore, Marin General Hospital and its associated medical organizations are among the best in the country. So, right away, I feel that I am blessed to be living here.

Secondly, I am a person with a deep spiritual commitment. My orientation is Buddhist, and my interests lie in Interactive Guided Imagery1 (mind stories), the enneagram, and conscious evolution. Being diagnosed with bladder cancer was a shock to my system of values, but the supportive community I live in combined with my Buddhist outlook has made this period of my life reasonably tolerable.

Micah age 7
Micah age 7

Thirdly, you should know that cancer runs rampant in my family. My father died of bladder cancer at the age of 86 and my mother died of another form of cancer at the age of 71. In addition, my son, Micah, now 47, survived a stage four Wilm’s Tumor (kidney cancer) which he had in 1976. The key to his survival may have been the use of some of the supplementary medical care techniques described later in this blog, as the surgeon had given him up for dead. Even my surgeon said, “We weren’t saving many stage fours in those days.” My son’s story was told in two episodes of “In Search of…” with Leonard Nimoy in 1976 and 1980.

Finally, my younger sister died of Leukemia in 1968 at the age of 27. With all of this happening, you might think that I was “predisposed” to get the curse.

PLEASE NOTE: This material is copyright(c) 1997-2016, by Dr. Jerome Freedman. All Rights Reserved.

This document is meant to be a description of the author’s experience and he in no way takes responsibility for the accuracy or completeness of any medical knowledge. The author assumes no responsibility for choices made by any of the readers of this material.

The author is not a physician and makes no claims about the potential usefulness of the subject matter herein to have any medical benefit. Please check with your doctor if you find something interesting that you would like to try.

[1] Interactive Guided Imagerysm is a service mark of The Academy for Guided Imagery, Mill Valley, CA.

 

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Appointment with Michael Broffman

My appointment with Michael Broffman at the Pine Street Clinic took place this afternoon for about two-and-one-half hours.

It’s all about aging. Bladder cancer is a disease in older men (and women). More about this later.

Michael said that I needed about 50 grams protein/day with about 2 quarts of water, a minimum of 1000 calories, and a low carbohydrate intake. Some of the protein can be gotten from rice or whey powders. This amounts to about .78 grams/kilo of protein. In connection with protein, he mentioned the research of Otto Warburg and Brian Peskin. Warburg got a Nobel Prize for demonstrating that oxygen deprived cells develop cancer. I asked about hyperbaric oxygen therapy and he said that it would be good for this reason.

I asked about what other treatments he would recommend and he gave me three ideas. The first is a substance called Gc-MAF. There is a Google video, which explains, “GcMAF triggers our immune response to cancer. Cancer cells deactivate Gc-MAF. Dr. Nobuto Yamamoto has shown that laboratory preparation and injections of GcMAF bypasses the cancer’s deactivation process and allows the macrophages to attack. This procedure has resulted in 100 percent cure rates for 4 to 7 years, the length of the studies to date. There are no side effects.” Michael said that you had to inject the Gc-MAF to be effective.

The second product in Michael’s bag of tricks is DCA or dichloroacetate. According to the DCA site, DCA “worked to reactivate the apoptosis mechanism of cancer cells, causing rapid shrinkage of tumors in rats. Mitochondrial reactivation represents an entirely new approach to treating cancer.” He recommended taking this during BCG treatments plus about 6 months. The dosage of 500mg corresponds to about 1/8 teaspoon and 100g should last me through the whole treatment. Sodium dichloroacetate can be purchased in Canada, but not in the US.

The third product is resveratrol. According to Life Extension, “Findings from published scientific literature indicate that resveratrol may be the most effective plant extract for maintaining optimal health and promoting longevity.” I’ve know about this for a while and almost ordered it several months ago, but I failed to do so.

Michael recommended several products to try post BCG treatments. These include pomegranate, curcumin and green tea extracts.

The anti-ageing plan begins after BCG with a 24 hour urine test for hormones and their metabolites. The goal is to bring testosterone up to the level of a 35 year old man. There will be herb supplements to support hormone replenishment. Another hormone of interest is aldosterone. A constitutional homeopathic remedy may also be used in this project.

New cancer treatments include HIFU in China. This stands for high intensity focused ultrasound and may now be available in the US.

I spoke about two other conditions that concern me. The first was acid reflux when I have too much food or lots of garlic and onions. Michael told me that the active ingredient in Tagamet, cimetidine is not only good to relive acid indigestion, but it has some immune and cancer fighting qualities. So I guess it is not too bad to rely on this when conditions dictate it.

My sleep problem could be helped by time-release melatonin. He said the blue or red lights don’t upset melatonin metabolism.

Both Mala and I felt really encouraged by this session. It seems like the BCG treatment is just a bump in the road and I should be cancer free when it is complete.

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Mother’s Day

I spent the morning doing research on new developments in bladder cancer. I visited the Bladder Cancer Advocacy Network and watched some videos from the November, 2009 Patient Forum. The information was kind of distressing. At the same time KGO TV had a special on new developments in cancer and one of the segments was on bladder cancer. Obviously, this was the most interesting segment for me and you can watch it too.

Mother’s day was really nice. The girls made smoke salmon pizza and chocolate covered strawberries which were yummy! The Rossmans shared the meal and the day with us until late in the afternoon.

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Seven Years Have Passed!

Seven years have passed since I presented at Marin General Hospital with blood in my urine. These have been interesting times in my life. My kids are now grown and off to college.

I was laid off from WildPackets in April, and haven’t had a steady job since then. I’ve been working on several consulting projects and developing Jewels by Mala with my wife. The website is launched, but sales are slow.

Unfortunately, most of the information on this site is now 5-7 years old. I am considering doing more research in bladder cancer when I have the time, but this website should provide you with a guide to how to do the research yourself. We still think Michael Broffman has many good answers, and continue to direct people to him.

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A Scare in the Night

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 mindfulness 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.

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No Anna, No Dance!

Today is Monday and Anna is not having class tonight. But I have to prepare for chemotherapy tomorrow morning. This involves having blood work done early this morning and a visit to Dr. Gullion at 10:00. So I arrived at Meris Labs at 9:15 A. M., and thankfully, I had my lap top with me so that I could get some work done.  I didn’t get to see Dr. Gullion until 11:15!

We discussed the protocol and my blood tests. He thought that in my situation, it was a good choice and he wished more bladder cancer patients consulted him before they had a radical cystectomy, so that at least a bladder sparing protocol could be attempted. Although my white blood count was the lowest they had tracked, it does not inhibit continuing the protocol. So, tomorrow, we start again, but for the last time.

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Don Alejandro

This week and next week will determine the future course of my treatment. The Shipley protocol calls for another TUR around May 6, to determine if there is any cancer in my bladder. The question for Dr. Neuwirth is, “Is my bladder free of cancer?” If the answer is no, then I am to proceed with more chemotherapy and radiation. This phase is known as “consolidation CFI,” where CFI stands for cis-platin, 5FU, and irradiation. If the answer is not no, then Dr. Neuwirth will probably recommend “radical cystectomy,” which I want to avoid.

To help me cope with such a decision, I went to see a Peruvian shaman by the name of Don Alejandro this morning. The session took place in Sebastopol, about 50 miles north of Sausalito. I had in interpreter who translated Don Alejandro’s Spanish into English for me on the fly – as he was speaking. This was a little confusing at first, but I eventually got used to it. I asked him the question on the list in appendix 4.

In the session, Don Alejandro told me that my disease was hereditary. Then I explained to him how my sister died of Leukemia, my mother of an osteosarcoma, my dad of bladder cancer, and how my son survived kidney cancer. Don Alejandro recommended that I continue with the chemotherapy and radiation, if that was required. He felt for sure that I would be cured of cancer, but that it may be a slow process. He said that there would probably be more than one looking into my bladder for cancer. He gave me advice on what to eat: no cold drinks, no red meat, fish in small quantities, and no sea food (my favorite). I should eat steamed or raw vegetables to make up the calories that I need to take in. Cold drinks cause the digestive system to clam up and can cause inflammation in the bladder. I don’t quite understand this, but maybe Michael Broffman can explain it to me. He suggested I take cat’s claw, which I already knew about. I’ll also check this out with Michael Broffman.

He said that I should maintain peace of mind and let all of my problems go. He asked me if I followed any religion, and I naturally told him that I followed Buddhism. He didn’t make a comment about this, but I’m sure it figured into the psychic equation.

Prior to doing his psychic healing, Don Alejandro had me drink a herbal beverage that was quite bitter. I was expecting apple juice! Then I laid down on the bed and he proceeded to heal me according to his methods. He first explored my bladder with his hands and then began a chant in a strange language that could have been mistaken for Hebrew. The chant lasted about five minutes and was very soothing. I noticed that he was sitting with his hands in the prayer position while chanting.

The next thing I knew was that he was laying his hands on my bladder area. After a while, I got the idea to open psychically to him, and I felt him penetrate my defenses. I found myself smiling during the process, and furthermore, I maintained a focus on my breathing with “healthy… free…” Some of his manipulations of my bladder area began to hurt, and I tightened up a bit. Then I realized that this was part of the healing process and I relaxed into it. His work proceeded without further hindrance from me, and soon it was over. He pronounced the healing complete, and, at the same time, ended the session.

I left Sebastopol almost immediately, as I felt that I needed time to integrate what he said and what he did. We came straight home and I did a “mind story” about the healing. My feeling now is that he did major good and I would definitely see him again. By the way, the tape recorder was on “pause,” so I didn’t get any of the conversation. However, the essence of the treatment was the healing, not the words.

In a way, I am now better prepared for a bad answer from Dr. Neuwirth, because Don Alejandro had said that I may have to have my bladder looked into more than once. I’m not sure if he was seeing the follow-up cystoscopic exams, or another TURBT.

In the afternoon, I went to see Dr. Neuwirth, who was quite pleased with how I looked. However, he did not examine me and his scheduler made a point of my having a physical exam with Dr. Belknap before the surgery next week on May 8. He did say that he was willing to have Julie Motz in the operating room with him. He even mentioned that she was in the operating room with a friend of his last week.

For those of you who haven’t heard of Julie Motz, I’ll give you a little run down of what I know from reading the Pacific Sun article from April 23, to April 29, 1997. The article basically states that Julie enters the operating room with the surgeon and does laying on of the hands healing during the surgery. She is the first to use energy healing in the operating room. She works primarily with cancer and heart disease patients. She is giving a lecture at Marin General Hospital on May 8 at 7:00 P. M. I’m trying to use my connection with Leslie Davenport to get to speak with Julie Motz about visiting me during my surgery next week.

Julie Motz called me a little later and said that she would love to work with me, but she can’t do it on May 8. I’m now trying to reschedule my surgery for May 9 to have her there and participate in my healing experience. Maybe I can even get her to write a preface to Yellow Stream!


In the evening, I attended Anna Halprin‘s class. As Anna was receiving an award from her piers, the class was taught by Jordy. She taught a class before, and this one was quite good. The theme of the evening was getting in touch with parts of our bodies that were free and not so free. I identified my knees as being not so free and my buttocks as free. We expressed these parts through writing, movement, working in pairs, and drawing. I drew the above picture. Click on the picture to get a full size version. Then click here to get a rotated version. Quite by accident, the picture works from both orientations. In the first, we see two people lying in the grass with a blue sky above them. In the second, the people are still lying in the grass, but now they are by a lake and the sun is reflecting in the lake. On the back of the picture I wrote,

“Life is made up of free and non-free elements. Aren’t we lucky that there is no permanent self to carry foreword after this life is over? We are free to live our life as we want and discover how to integrate free and non-free elements.”

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A Mini Enneagram Lesson

April 6, 1997 – A Mini Enneagram Lesson

My oldest daughter is returned from Miami today only three hours late!  It’s been six days since I’ve seen her, and by her silence I know that she is safe and having the time of her life.

I was supposed to have a massage this morning, but it got cancelled because of the birth of a new baby instead! Oh well! So instead, I thought I’d tell you what I’ve been thinking about lately according to the enneagram.

The enneagram is a diagram that describes nine personality types shown in the diagram to the left. Each personality type has associated with it a vice and a virtue. In my case, since I’m a trooper, my vice is fear and my virtue is courage! This whole cancer issue for me has been a question of courage to face and accept my condition and find the necessary faith to take charge of my own treatment plan. By learning your enneagram point, you can discover what your vice and virtue are, and manage your case with the appropriate actions for your personality type. For more information, please see my enneagram pages.

I received another email from R. M., a 59 year old man in New Zealand who has bladder cancer and doesn’t want radical cystectomy either. We have been corresponding for more than a month, and the message I received today was quite special. He shared with me that he too had been a follower of Rajneesh, and offered many of Bhagwan’s meditations to me. I wrote back that I was called Swami Deva Ninad by Rajneesh in 1975 and knew all about the meditations. I’m waiting to hear back from him!

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