Oncological Consult

February 3, 1997 – Oncological Consult

Finally, one of my girls was recovered from the horrible virus that has struck our community, but we still had the other one at home. Having the girls around makes strategic conversations a little difficult. However, we were scheduled into Dr. Gullion this morning and I got T. W. from my conscious evolution group to stay with J. J. and L. once again consented to be present at the consultation with us.

heart-954975_640

We sat down with Dr. Gullion and he was wearing a pin shaped like a heart over his pocket. He was tall and had a very welcoming smile. However, due to the seriousness of my illness, he was a bit serious himself. He sent the others out of the room for a few minutes while he examined me.

When the others returned to the room, he asked me what was wrong (as if he didn’t know) and I explained that I had a stage four bladder cancer that was highly active along with carcinoma in situ and some dysplasia and atypia cells. He was impressed with my understanding, and proceeded to write out my diagnosis and treatment alternatives “Patient Communication Sheet.”

You have: Papillary transitional cell carcinoma, Grade IV/IV T2 (T3a), N0, M0

Treatment:

  1. Radical Cystectomy – standard therapy
  2. Neoadjuvant therapy – Bladder sparing

Chemotherapy – MCV x 2 cycles followed by radiation: 4000 rads with cisplatin (2 cycles). Then re-evaluate with cystoscopy and biopsy. If (-) – radiation – close follow-up. If (+) – surgery.

While this was slightly different than the Shipley protocol as I understood it, I could see that he had done his homework after speaking with Dr. Rossman.

We continued to ask questions (see Appendix 2, available on request), and left with the feeling that radical cystectomy was the way to go. We discussed both options with J. and L. over lunch. During that time, I decided to go to their house with them in order to use their Jacuzzi bathtub. As we passed the tennis courts, I was filled with grief, as I surely would rather be playing tennis. That night I was starting to come down with a cold, which my wife treated homeopathically.


This is a good day to take just a minute and go see the amazing trailer to The Truth About Cancer – A Global Quest… it will blow your mind:

Treatment Options

January 30, 1997 – Radiological Consult

The next day we met with Dr. Torigoe. This time we took J and L with us. They have been friends for the whole time my wife and I have been together, and they have and extremely rational outlook on life. Naturally, we would have liked to take Dr. Rossman too, but he has his practice and we didn’t want to bother him.

We had a very long discussion with Dr. Torigoe. His patience and understanding were remarkable. He, too, thought that the “Gold Standard” for treatment of bladder cancer is radical cystectomy. But, as he put it, “Radiation and chemotherapy are a viable alternative, especially if the radical cystectomy is too morbid for some people.”

When I explained what transpired in our conversation with Dr. Torigoe to Dr. Rossman, he recommended that I contact Dr. Dave Gullion, who he was planning to see the next day at Commonweal. Dr. Gullion is a medical oncologist in the same building as Dr. Torigoe and he is also associated with Marin General Hospital.

bridge-1276180_1920

January 31, 1997 – Yellow Stream!

On the morning of January 31, 1997, I finally had what looked like a normal yellow stream! I was so excited that it made my day. Another great thing that happened that morning is that M. C. gave me a check for four therapeutic massages with Elyse, whom we’ve been seeing for over a year.

Around 11:00, R. M. called my to have lunch with J. M. J. was diagnosed with prostate cancer several years ago, but appears to be in remission now, with only natural medicine regimes. His PSA test is normal now, but he has had to work hard and be careful with his diet. Luckily, J. M. has the resources to fly all over the country to find the best alternative medical treatments.

J.’s original reaction to my situation was to recommend radical cystectomy. However, having the night before to look through his library of books on cancer, he had changed his mind by the time he picked me up to go to lunch. We discussed all the alternative healers that J. had visited, but much of his treatment didn’t apply to me, since prostate cancer is much slower growing. Overall, it was wonderful to have the support of someone who has had to deal with the same emotional issues when confronted with having cancer.

Later that afternoon, three members of my evolutionary circle visited me and they proceeded to perform a healing circle for my benefit. It was shortly after they left that I named this we site, “Yellow Stream!”

After they left, I had time to look at the papers that were sent over by Dr. Huang. One of these papers was delivered on my 55th birthday in 1995 and bore the name of William U. Shipley. I spent much of the rest of the afternoon tracking down other works by Shipley and his associates and ultimately finding the phone number of his son. I phoned Shipley’s son and pleaded my case to him. He agreed to notify his father and possibly have him call me.

Later that day, I phone Dr. Neuwirth to see if he knew of Dr. Shipley. He said, “Shipley – Oh yes, the bladder saving guru!” I was excited that this man was known even to a local Urologist! Just before we got off the phone, I asked Dr. Neuwirth if he had a copy of the completed pathology report that he could fax to me. He said that he did and he would.

Radical Is As Radical Does!

January 29, 1997 – Radical Is As Radical Does!

Around noon on this day, I received a phone call from Dr. Neuwirth. He wanted to see me in his office at 5:00 P. M. that afternoon. He also told me that I had a bladder cancer and that he needed to explain to me all of my options.

iphone-313845_1920

Instead of panicking, I immediately started a search on the World Wide Web for “bladder cancer.” I found many references and lots of good sites. I printed off several of them to take with me to Dr. Neuwirth’s office. These included Bladder Cancer, Understanding Bladder Cancer, MedicineNet’s Bladder Cancer, and About Bard BTA Test. Of these, the first turned out to be the most useful because of the way it talks about treatment by stage of bladder cancer.

We brought R. D., the father of a childhood friend of my wife, and Dr. Rossman to the meeting with Dr. Neuwirth to help us remember the conversation and all that we said. It is always a good idea to take people you trust so that they can bear witness to your conversation and possibly hear things that you can’t because of your emotional involvement with the case.

Dr. Neuwirth started to explain the “stage” and “grade” of the tumor based on a preliminary verbal report from the pathologist. Once he said “T2,” I dropped the Bladder Cancer paper pointing to the section on T2-4 tumors. His jaw practically fell to his desk! He said, “I wouldn’t put it that bluntly, but that’s basically what we have here!” He also mentioned that I had some carcinoma in situ and a bit of dysplasia, which are abnormal cells. Later, we found out that I also had some atypia cells from Dr. Torigoe (see below).

He proceeded to explain the ins and outs of the medical alternatives for treatment of stage two bladder cancer. The choices were basically

  1. Cystectomy – partial or radical
  2. Radiation
  3. Chemotherapy

Dr. Neuwirth, being a surgeon, naturally recommended radical cystectomy. We asked him all of the questions in Appendix 1.

My son was born on January 29, 1969. Today he was 28 years old. It’s funny how life is. I had to give him the bad news on his birthday. On March 7, 9, 14, and 16 he was scheduled to have a leading role in La Boheme, as Marcello. I wanted to see him perform and didn’t want any disabling therapy to begin before I had a chance to see him.

That night, we spoke with Dr. Sara Huang, a radiation oncologist at St. Mary’s Hospital in San Francisco. She has long been a friend of the family and was devastated by the news. She mentioned that the “Gold Standard” of treatment for bladder cancer was radical cystectomy. However, she had some hopeful information about the possibility of chemotherapy used in conjunction with radiation therapy and recommend that we consult Dr. Wayne Torigoe at Marin General.

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.