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My Room With a View
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.
Protected: Guided Imagery
Stop Cancer Introduction
Lying still,
Breathing in, breathing out,
Healthy cells grow all by themselves.
I am free of cancer!
This 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.
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.
3 Down… 3 To Go…
This long overdue email is about my current status with formerly muscle invasive bladder cancer.
Since my last posting, I have talked to Dr. Meng and he said, “You’ve made the right choice.â€Â
He also said that BCG treatments could easily deal with the remaining carcinoma in situ.
BCG is an attenuated tuberculosis vaccine that is instilled directly in the bladder with a catheter. It causes an immune response which gets rid of the BCG and the cancer J! I’ve had two previous BCG treatments in my 17 years of living with cancer and they both were effective.
So I started BCG on July 9 at Marin Specialty Care in Greenbrae with Dr. Neuwirth who had been following me for 17+ years.
The first treatment resulted in a bladder infection which required me to take antibiotics and lose a week, but all is well now.
After the second infusion on July 23, I had this wonderful experience of knowing that the BCG was going to work and work well.
That night, I felt some side effects of the treatment. I became extremely dizzy and had trouble sleeping. As with everything in this universe, this, too has passed.
Yesterday’s treatment went very fast and I was in and out in something like 15 minutes.
Last night, however, I had a slight fever and a mild headache. Today, I’m fine. 3 down… and 3 to go… I’ll be done with cancer on August 20.
I’ve been missing your calls and emails! I trust you are all doing well.
May you all be free from suffering and the causes of suffering.
Good News to Share
As you know if you are following my emails and posts, I had a biopsy under anesthesia on June 8. We received the results last Wednesday.
Since today is also the fifth anniversary of Mindfulness in Healing, I thought I’d let you know what the doctors found. I have not yet confirmed these results with Dr. Meng, but I think the report is probably accurate.
It states that, “Smooth muscle present, not involved by carcinoma.†I think this means that I no longer have muscle invasive bladder cancer! Yay! J Non-muscle invasive bladder cancer is much, much easier to treat and I don’t anticipate needing a radical cystectomy any time soon.
Two other items are worthy of reporting at this time.
I have begun work on a new book called The Seven Principles of Mindfulness in Healing. This book will present the principles and illustrate them with content about my personal healing experience. I invite you to take a look at my article on the 7 Principles of Mindfulness in Healing on Thursday morning, June 19. I you have any stories to tell that fall into the 7 principles, I’ll be happy to consider publishing them.
Finally, I have completed a major revision of the Enneagram Instrument web site. I invite you to try the enneagram instrument for $.01. You can cancel any time up to 10 days and not be charged another whopping $8.99.
Your comments and questions are welcome by phone, email, or drop-in visits!
May you be free from suffering and the causes of suffering.
Latest News
I hope you are all well and happy.
I want to share with you this latest news about my health condition.
In the last email, I told you that Dr. Meng did not see anything he would want to biopsy. This was absolutely true.
We got the results of the cytology test on my urine last week and they found cancer cells in my urine.
Dr. Meng gave me three alternatives: radical cystectomy, biopsy under anesthesia, or BCG treatments. BCG is an attenuated tuberculosis vaccine that is administered directly into the bladder. It causes and immune response that takes out the cancer cells along with combating the tuberculosis. There are no research papers on the effectiveness of BCG with muscle invasive bladder cancer.
We decided on the biopsy, which will take place next Friday, June 6 at UCSF on Divisadero.
I am still in a good place with regard to my treatment and meditation.
Yesterday, I saw a wonderful Ayurveda physician, Dr. Sarita Shrestha. She had be teaching Rachael since the beginning of May and I was fortunate to get an appointment with her. She has a hospital in Nepal and treats people in the outlying villages. She advised me to move ahead with no fear and not think about cancer.
I also spoke to Roger Morrison who’s advice as a friend was to not rush into the radical cystectomy. He thought that giving the homeopathic cancer remedy he gave me needed more time to work and I need more time to see if there are any other immunotherapies that might help.
I am thinking of GcMAF (see gcmaf.eu for more information).
Your visits, calls, and emails are still very important to me. I am happy and grateful for your love and support.
Meditation Furthers
Mala and I went in to see Dr. Meng on Thursday last week for a cystoscopy. This was one week earlier than expected. The news could not be better!
The equipment at UCSF was more sophisticated than here in Marin and the procedure went very smoothly, including the lidocaine. The cystoscope seemed to be thinner than the one in Dr. Neuwirth‘s office and it was connected to a high resolution monitor.
We were able to watch the entire procedure on the monitor.
Dr. Meng showed us around my bladder, including the entry areas for the ureters and the prostate. He then exclaimed, “I don’t see anything that I would want to biopsy. Come back in three months!”
We still have to wait for the cytology analysis of the urine, but I don’t think they will find anything.
Go here to read about how meditation furthers.
Thank you all for your wonderful prayers, visits and support!
Health Update
I want to update you on my progress in healing.
I’ve decided on the road not taken. This means that the radical cystectomy (complete removal of the bladder, prostate, and some lymph nodes) recommended by Dr. Meng and most other doctors is for now being rejected.
I am going to have a cystoscopy tomorrow, May 8 at 2:00PM. Dr. Meng will look inside my bladder to see what the status is. Your prayers for his finding nothing to be concerned about are invited and welcome.
I came to this decision within three weeks after seeing Dr. Meng and having the chemo stopped. I was leaning in this direction for a long time and finally took this step after seeing Dr. Roger Morrison – an MD and homeopath we have known since the girls were little. His gentle compassion and deep insight moved both Mala and me deeply. He gave me a homeopathic remedy that I have been taking for 2 ½ weeks. I don’t know if it is working.
My meditation practices have kept me focused on healing throughout this whole period. I am still a little anemic from the chemo, but getting better and better every day.
I really appreciate all your love and support and look forward to your calls and visits. Thank you from the depths of my heart.