Tag: chemotherapy

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A Pot To Pee In

Point Lobos - China Cove

I started my second cycle of chemotherapy this morning with two hours of hydration, anti-nausea drugs, and gemcitabine. In order to qualify to receive the gemcitabine, I had to produce more urine. The nurses have been collecting my urine all day to insure I was fully hydrated. So don’t say to me, “You don’t have a pot to pee in!”

Point Lobos - China CoveNow rather cisplatin is dripping and I’ve been thinking about the wonderful three days we had in Carmel on Sunday, Monday, and Tuesday. We spent most of our waking time in beautiful Point Lobos and eating. Mala would walk around town when I rested.

The most unsatisfying news today I had was that my white cells blood count is low. Now I have come in for three days of neupogen shots to increase my white blood count.

Visitors were plentiful and I enjoyed them all. Judy came with news of her trip followed later by Mala with lunch, Jane with grapes, and Carolyn.

Carolyn walked with me on the path to catch up with Mala who was walking with Jane and her dog.

I was happy and grateful for the company and the end of the first treatment in the second cycle.

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More than Nine Years Have Passed

Today, I begin revamping the web site by adding features that may improve the readability and access to information. I am also adding a section on books on cancer.

When I first started working on this web site, I only had done one site before The Enneagram in the Electronic Tradition. Now that I have developed Jewels By Mala, NewTerra, Jobs-Are-Us, Mountain Sangha, and MICAH Affiliates, as well as internal web sites for The Technical Committee, I have enough experience to do a better job on Yellow Stream.

In the meantime, I am experiencing excellent health. My last cystscopy was in June, 2005 and everything was good. I am experiencing no after effects of the radiation or chemotherapy, other than ease of exhaustion.

My son, Micah is living in New York and doing computer graphics and web site development. He has started a theatre company, QED Productions with a group of his friends. He produced and acted in Tom Stoppard’s Arcadia last November at the Greenwich Theatre, which Mala and I attended. The group plans three productions for next season. Come if you can!

Rachael is entering her last year in architecture school at Woodbury University in San Diego, CA. She is a lovely and kind young woman with a bright future.

Jessica graduates with honors and a double major in Spanish and Journalism from the University of Oregon in three weeks. She will be teaching in Spain in the fall under the auspices of the Spanish Consulate. Mazel Tov – Jessica.

Mala is a wonderful and supporting spouse. She is doing great work with her jewelry designs.

For the past four years, I have been intimately involved with the Mountain Sangha in Mill Valley. Our sangha practices in the tradition of Thich Nhat Hanh, whom I’ve written about in previous chapters. Please read My Breakfast with Thay to see what happened when I visited Plum Village for the second time in March, 2006. It was a wonderful visit!

My Buddhist practice now consists of morning meditation, tennis when possible, walking meditation, and reading of Buddhist scriptures. I am an aspirant in the Order of Interbeing. I am also working towards offering a class on Mindfulness in Healing through California Cancer Care and other institutions. The class is based on my experience, which is documented in these pages.

My tennis game continues to improve. I play for Harbor Point and our team went to the divisional playoffs last month as a wild card team. My partner and I won one match, but lost two others – one in a tie break. I try to play every day that I don’t have to go to Palo Alto (where my office of TheTC [see below] is located).

I now have perhaps the best work in the computer industry. I am working as a consultant to the Technical Committee (TheTC) of the Department of Justice. TheTC is chartered to monitor the compliance of Microsoft with the antitrust settlement agreement which just has been extended until 2009. Because of the work I did between September, 2004 and December, 2004, 30 engineers have jobs and we are making sure that Microsoft correctly documents their proprietary networking protocols for licensees.

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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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Another No-Cancer Day!

Today was another day that you wouldn’t think I had cancer unless you asked! I spent the morning scanning images from the graduation and Father’s day last week. In the afternoon, we went to visit friends in San Mateo, and we took a walk that was the longest walk I’ve been able to manage since completing the chemotherapy. I didn’t think too much about my disease until I arrived home exhausted. Then I felt it in spades and choose to listen to Thich Nhat Hanh.

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Father’s Day

Today is the last installment of Yellow Stream for the book, Healthy Cells Grow All By Themselves. I think it is appropriate to end the paper version here for several reasons. First of all, I’m finally on my way to recovery from the last effects of the chemotherapy and the radiation. Secondly, the book is dedicated to my children and my spouse, and what better time to end than on Father’s Day? Thirdly, I want to share with you some of the secrets that I have learned in raising happy and independent children over the last twenty-eight years. While I still have young ones in the house (R. is fourteen and J. is twelve), my son is 28, and living a happy and independent life. And finally, I feel that my greatest accomplishment in life so far has been being a “dad” and raising such fine children. If other children were raised with the values and love that I have given to my children, things would be a lot better in the world.

So, what are my ideas about raising children? Well, one of the first things to think about is that

“Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children as living arrows are sent forth.
The archer sees the mark upon the path of the infinite, and He bends you with His might that His arrows my go swift and far.Let your bending in the archer’s hand be for gladness;
For even as He loves the arrow that flies, so He loves also the bow that is stable.”

This quote is from Kahlil Gibran, The Prophet, Alfred A. Knopf, New York, 1951. You have all probably read it before, but lost sight of the “arrow.” I have always tried to keep in mind that my children have come through me, but not from me. I have also tried to remember that they have their own thoughts and dreams, which I cannot even imagine. I have always tried to give them the space to grow into special individuals, and, as you can see from R.’s speech the other day, it seems to be working.

I also value instilling upon my children the importance of developing a love for learning, and, as a result, have invested my hard-earned money on private education for all three of them. My son went to Mt. Tam Primary School, and the Branson School, each fine independent schools in their own right, before graduating from Stanford University. R. and J. have been in Marin Horizon school since they were about two years old! This school is based on Montessori methods, and fosters individuality, along with a respect for all life forms and other people’s property. I love the education my daughters have received, and I feel that they are prepared for any eventuality.

Another area of parental concern is that of control, partly for the safety of the child, and partly for setting limits. In this area, I have always remembered what Shunryu Suzuki Roshi had to say about control in Zen Mind, Beginner’s Mind (Waterhill, New York, 1970, p 32):

“…Even though you try to put some people under some control, it is impossible. You cannot do it. The best way to control people is to encourage them to be mischievous. Then they will be in control in its wider sense. To give your sheep or cow a large, spacious meadow is the way to control him. So it is with people; first let them do what they want, and watch them. This is the best policy. To ignore them is not good; that is the worst policy. The second worst is trying to control them. The best one is to watch them, just to watch them, without trying to control them.”

I was deeply affected by this passage back in the seventies when I first read it. I remembered it and applied it to controlling my children. This way, they had a “spacious meadow” in which to explore life and learn the boundaries that were set for them in a happy and contented way.

Among the other values I try to instill in my children is the ability to make decisions for themselves. To do this, I taught them a reliable subjective basis for making moral and ethical decisions based on clear comprehension of the alternatives. Included in this reliable subjective basis was a love and respect for all life forms and respect for other people’s property, as mentioned before. As an example, when my son was eleven or twelve, he excelled in two activities that both made us proud. He was an excellent gymnast and a talented member of the San Francisco Boys Chorus. The gym was in San Rafael, and the Boys Chorus was in San Francisco, both more that ten miles in opposite directions. We sat down with him when we realized that these activities were not only stressing us out, but causing him some concern. After weighing all sides of the issues, he decided to stay with the Boys Chorus. This was a momentous decision for him, as it led him into a direction of the performing arts. For example, at the Branson school, he played Biff in West Side Story, El Gayo in The Fantastics, and was on of the founding members of the Barber Shop Quartet. At Stanford University, while he minored in music, he was a member of the Stanford Fleet Street Singers, and director for two of his four years there. Since his graduation he has played major parts in Iolanthe, La Boheme, and Naughty Marietta. He plans to move to New York in August to try to make it into the big time, all the while maintaining his skill as a computer graphic designer. You can see some of his work by browsing to his web site, and remember the he is a cancer survivor!

Well, enough of my ideas for raising children for now! What about the events and feelings of the day?

We were invited to lunch at Mikayla’s by our friend J. and R., who own the place. J.’s sister was also there with her family. She and R. both studied with Anna Halprin, so we had many interesting conversations about various topics. Besides that, the food was magnificent and we had a difficult time leaving.

My son came back to the house and we spoke for hours. It was during this time that he revealed to me his plan to give New York a try. I was totally supportive, for I believe that he is still young enough to give it his all, and he always has the fall-back position of doing computer graphics. What impact this will have on his almost seven year relationship with his girl friend, I don’t know and won’t even try to predict.

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Zen Mind, Beginner's Mind

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“Let My Heart Fly Open, Let Me Come To You”

I was speaking with Joe, one of the facilitators of the Life Threatened group at the Center for Attitudinal Healing the day before yesterday to find out what went on in the group. There was one person who wasn’t given much of a chance of returning, and yet she did. I had been thinking about her the whole time I’ve been recovering from the treatment, and couldn’t wait to talk to Joe about the person. As we were speaking, Joe told me the story of his illness and work with the Center, which I can’t repeat here, except to say that he had had an experience of moving out of himself to the other.

Helen Palmer speaks about a similar experience. Our first line of work in the enneagram is to know ourselves. This we do through self-observation practice which corresponds quite closely with mindfulness meditation that I often write about. In fact, the self-observation practice that Helen teaches is to pay full attention to the breath in the belly, following the inhalation, the pause, the exhalation, and the return. This is the full cycle of the breath in the belly. As bodily sensations, feelings, thoughts, plans, memories, and fantasies enter into the mind, the are swiftly moved away, like a fallen leaf drifts slowly down by the effect of the wind. She teaches that when one becomes still in this way, one begins to get feelings that come before you know what you will feel, and that these feelings can be of the other. This process leads to the second line of work, which is to know the other as they know themselves.

When I spoke about similar matters with Leslie Davenport at our last session on May 29, I asked her what she thought was going on with me. She said, that in Sufi terms, she felt the I was changing “macoms,” which she described as “place.” I had heard about macoms at the First International Enneagram Conference three years ago, but I still don’t know much about them. She had said that one man’s macom is another man’s ecstasy. Apparently, as one moves from macom to macom, one becomes closer to the divine. My interpretation is that I am experiencing a great opening of  my heart, which probably began in the spring and was furthered by my experience at Anna Halprin’s studio on May 28.

The quote in the title is from a Sufi song that cries out for the presence of the divine. From this sparse information, I gathered that Leslie thought that I was moving into a new state. In this state, I personally feel a transformation from thinking mostly about myself to thinking about others. I’ve always thought a lot about my children and my spouse, but now I am thinking about other people a lot, especially the ones in my support groups.

So, today, when I had a massage, followed by a Feldenkrais session with Gail Teehan, I could only think of this song. Her loving hands seemed to strip the chemotherapy of its grip on my healthy cells and, as she massaged my feet, I felt the unwanted cells leaving my body through my shoulders. Her work on my lower back, shoulders and abdomen was the best massage I’ve ever had in those particular areas. I felt so cleansed by the whole massage that I began to cry when I sat up to change over to the Feldenkrais lesson. My heart was singing, “Let my heart fly open, let me come to you!” I had never cried before after a massage, and I had never felt so touched by the divine. I’ll never forget those feelings. It was like yearning for the divine and receiving grace. Throughout out my whole emotional experience, Gail was there with me with her loving presence and guided me to a safe space for us to continue with the Feldenkrais work.

The Feldenkrais lesson was shortened, due to the length of the massage, but it was excellent. She worked on my shoulders and my spine, and I really felt great! Then I gave Gail a shortened version of a Zero Balancing treatment, which I think she enjoyed. Nonetheless, it’s up to her to write about it!

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One Bite at a Time, One Step at a Time

The last few days have been really rough on me. The chemotherapy and radiation are really taking their toll on me in a big way. I haven’t even been able to compute these last few days!

I’ve had bladder spasms, diarrhea, and gas pains on three successive days, accompanied with tremendous exhaustion. I spend most of my days lying in bed and practicing mindfulness of breathing. I have read a little, listened to a few tapes, and watched the French Open, but most of  I just lie in bed. Breathing in, “healthy cells grow all by themselves.” Breathing out, “I’m free of cancer!”

When it comes to eating and moving, I find that I can only eat one bite at a time! When I walk, I can only take one step at a time. Of course, this is normal behavior, but in my present physical state, there seems to be an awareness at a different level of each bite, of each step.

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The Last Day of Treatment!

Today, I complete the Shipley bladder sparing protocol. Once again, I choose to spend the day resting in the examination room. It was uneventful, except for the lovely visit of A. M. Now it’s time to get in bed again until my final radiation treatment at 5:00 P.M. Then it’s time to celebrate, but I won’t do so until I recover from the chemotherapy and radiation. When I completed that last radiation treatment, I received a diploma for a job well done signed by all of the staff, but not the doctors.

I gave Dr. Gullion and Dr. Halberg copies of Yellow Stream and asked for their comments about the protocol and my response to it. If their writings are not too delayed and contain some valuable information, I’d like to include them as an appendix to Yellow Stream.

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The True Teaching of Zen

The second round of chemotherapy went without incident. I chose to spend the day in an examination room with a hospital bed to try to get some sleep. I also broke may lap top and have to send it to Nasuah, NH to be repaired. The tapes I brought to listen to were quite suitable for my purpose of getting some rest.

In the evening, I barely made it to my daughters’ presentations on the culture of Japan. My twelve year old demonstrated the making of Sushi and prepared an exhibit of other Japanese foods. My fourteen year old gave a speech on Zen Buddhism: Its Beliefs and Effects on Society. I was so proud of both girls, but I had to leave early to get in bed.

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“There’s Always Things We Can Do”

I started chemotherapy and radiation again today and it was “no piece of cake” (tomorrow is my brother’s birthday!). I had to be stuck four times before the i. v. took. In addition, the oncology group seemed to ignore the request of the radiation group that I be downstairs for my first radiation treatment by 12:30. So, Dr. Gullion cleverly sped up the protocol to grant their request, and I don’t know if this is good or bad, so I won’t pass judgment on it right now.

I was fairly wiped out after the chemotherapy and listened to a tape of Helen Palmer. There was so much good material in the tape that I easily fell asleep two or three times! I guess I’ll try to use this tape rather than sleeping pills. Some day, I’ll write more about what’s on the tape.

L. C. took me to the second dose of radiation. During our trip in the rush hour traffic, I was telling him about my daughter’s paper, Zen Buddhism: Its Beliefs and Effects on Society, which she is presenting tomorrow night. In spite of my so-called weakness from the chemotherapy, I experienced that her opening statement,

A special transmission outside the Scriptures;
No dependence upon words and letters;
Direct pointing to the soul of man;
Seeing into one’s own nature.

was true and felt a wave of ecstasy move through my body and focus on my bladder.

My wife really needed to go to the “Care Givers'” group at the Center for Attitudinal Healing tonight, so I went to the “Life Threatened” group. It was the best experience I ever had at the Center! I was moved so much by many of the opening statements that I felt the desire to speak first. I shared the difficulties that I was experiencing with my wife, and then the beautiful experience I had at Anna Halprin’s studio last week. Then I told the group about the email I sent to the Dalai Lama, which I quote here:

Dear Your Holiness:

I have been a practicing Buddhist since 1985.  I have been invited to the Tibet House Reception at the home of Ingrid and Reuben Hills in San Francisco next week, but I am unable to attend because I am recovering from bladder cancer and the requested donation is a little too steep for me.  However, I have inspired many of my wealthier friends to donate to Tibet House.

If I were to attend, I would ask you the following question:  I know that Padmasambhava is known to have said, “When the iron bird flies and horses run on wheels, the Tibetan people will be scattered like ants across the world and the Dharma will come to the land of the Red Man!” I want to know, first of all, how authentic is this quote?  Secondly, I want know how he could have foreseen ALL of these developments back in 828 A. D.?

Thank you so much for your response.  If you have time, you may want to visit my web site, “Yellow Stream” to see just how much mindfulness meant to me on my healing journey.

I love you and adore the Tibetans I’ve met.  In 1975, I visited Bodh Gaya and the Bo Tree of the Tathagata!

Thank you so much.

I raised the same questions with the group and everyone was touched! I also shared my experience in the car on the way to radiation therapy.

The other members shared so much valuable experience that I felt honored to be there. Because of the guiding principles of the Center, I feel bound not to reveal their stories except to say that one member’s significant other had made the above statement when news that was not so good was revealed. I offered that member and two other members who touched me deeply by their stories to do guided imagery with them if they wanted. In addition, since the Center is having financial difficulties, I felt moved to offer a workshop called, “Zen and the Art of Healing,” with all proceeds going to the Center. The two facilitators I spoke with about the workshop were wonderfully supportive! At the end of the group, I passed on the healing stone I received from Anna Halprin and passed around the group at the Center to one of the participants who I felt needed it more than I. The person was extremely grateful and said, “Do you mean I can keep it?”

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