Diligence Required

I am beginning to feel normal again after 4 instillations of chemotherapy and mild complications from it.

On March 20, I was scheduled for the 7 ½ hour chemo and couldn’t have it because my creatinine (a measure of kidney function) was too high and my red blood cell count was too low.

I returned the next week on March 27 only to find that the creatinine was still too high, although the red  count had gone up. Dr. Gullion, my oncologist from 17 years ago, wanted Dr. Meng, the surgeon at UCSF to make the decision about more chemotherapy. So he sent us right away to UCSF.

Dr. Meng, without hesitation, said, “No more chemo. You have two weeks to decide.” He also recommended a CT scan without contrast, since the contrast element is harmful to the kidneys. I had the CT scan before we left the UCSF medical center on Divisadaro.

I’ve been working on the decision since that day.

The first good news was that there was no visible cancer outside the bladder from the CT scan. This is good news.

We saw Michael Broffman on Monday, March 31 and were surprised to learn that I am a candidate for alternative treatment. I’ve had the feeling that I have equal changes with radical cystectomy and alternative treatment for many weeks now and Michael supports the road not taken. This was good news.

Naturally, I’ll have to have constant surveillance by Dr. Meng to watch for any new tumors in my bladder and the proceed to cystectomy if some is found.

On Wednesday, April 2, I had a guided imagery session with Leslie Davenport, my therapist in 1997. I processed the road not taken (alternative therapy) and discovered that like cystectomy, this involves a lot of work of a different kind. I have to keep a strict watch on my nutrition and supplements and be very diligent in observing the advice of my inner guidance and my healers.

But then, with cystectomy, there is still all of this diligence required in order to prevent any microscopic cancer from developing elsewhere in my body.

So diligence is required in both cases. There are still many unanswered questions.

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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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Second Week Of Treatment

February 12, 2014 was the day for gemciteabin with that horrible dexamethasone. The night was not as bad as the previous night of treatment on February 5th had been.

The week has generally be good with many visitors.

I have been granted a scholarship by Sunflower Wellness at the Bay Club in Corte Madera. So far, I’ve had a qi gong, a yoga class with weights, and a yoga class taught by Marcie Anderson. I loved them all, although I was unable to keep up with Marcie’s class.

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Sound Healing

February 6, 2014, the day after my first chemo, I arranged for one friend to drive me to Berkeley for a sound healing with Edie Hartshorne. Another friend agreed to pick me up.

The sound healing was a gift from Clare – one of the leaders of the Healing Circle.

Edie has a pair of antique temple bells from Kyoto, and 14 Tibetan bowls. The sounds she made during the ceremony were wonderful and I managed to get some sleep.

Although sleep was a problem most of the week, I survived without incident until the next round.

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Let The Treatment Begin

On January 31, 2014, we met with Dr. Gullion. Remember, he is the oncologist who wears a heart pin on his shirt.

It was a bitter-sweet meeting, as both of us hoped I was cured.

Anyway, we discussed my situation and decided to begin treatment on February 5.

With Susan’s advice, I decided to have acupuncture with Dr. Marty Rossman each day before the chemo infusion. I am responding well to these treatments.

The first day of chemo on February 5, 2014 lasted 7.5 hours! I had cisplatin,  gemcitabine, and lots of anti-nausea drugs.

I spent the first hour meditating and then began the process of hydrating myself to minimize the effect of the chemotherapy agents.

I was visited by friends and even took a couple of walks around the atrium of the building.

All in all, things went quite well, except at night. Because of the dexamethasone in the drip – one of the anti-nausea drugs, I was up all night. I meditated. I wrote. I read. I did everything but sleep. Weird!

The herbs and supplements recommended by Michael Broffman arrived by special messenger (Carolyn) and I begen taking them with the kitchari Rachael had made.

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Chemotherapy Options

On January 16 and 27, 2014, we met with Dr. Charles Ryan and his fellow, Dr. Adam Siegel.

Adam gathered a lot of information, entered it into the computer and then brought in Dr. Ryan.

At first, Dr. Ryan thought I would benefit from neoadjuvant chemotherapy and even recommend a plan. Upon further review, he decided to send my case to a tumor board to get its recommendation.

The tumor board met on January 17 and it was unanimous that I needed my bladder taken out. There were eight members on the tumor board and four of them were oncologists like Dr. Ryan. He was out of town, so the case was presented by Dr. Siegel. All four of the oncologists recommended neoadjuvant chemotherapy.

The second meeting with Dr. Ryan was challenging and took place on January 27, 2014. The chemotherapy plan suggested by the tumor board consisted of four cycles of chemotherapy, each four weeks.

Dr. Ryan corrected the plan to four cycles of chemotherapy, each three weeks. Cispltain and gemcitabine are to be administered on the first day of each cycle, along with anti-nausea medications, gemcitabine with anti-nausea drugs on the eighth day, and then a week off. Yay! I had cisplatin 17 years ago along with 5FU.

When they told me I was scheduled to start on January 30, I balked. I could not imagine fighting rush hour traffic to get to UCSF by 9:00 in the morning, have to park, and be there all day.

I suggested that I talk to Dr. Gullion about administering the treatment close to home, and they accepted my suggestion. I had already scheduled an appointment with him for January 31.

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Meeting Michael Broffman

On January 13, 2014, we finally got in to see Michael Broffman. He basically said that there were three approaches to alternative treatments, depending on how much time we had.

The first approach was molecular profiling and research into gene expression. Alternatives were provided in his written report.

The second approach is the low-tech intervention of food, herbs, acupuncture, and the like.

The third approach is to look into off-label treatments and non-standard interventions which involve approved medications that can help.

The two-and-one-half-hour meeting was quite comprehensive and informative, as meetings with Michael are.

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Discussing The Options

On January 10, 2014, we visited Dr. Maxwell Meng.

Dr. Meng is now considered the “go to guy” when it comes to radical cystectomy – the removal of the cancerous bladder and replacement with an artificial one. If you have followed my story, you know that this was the “gold standard” of bladder cancer treatment back in 1997. It still is! As Dr. Carroll once said, “[Bladder removal] is a piece of cake!”

We discussed the types of artificial bladders, but I won’t go into details. The bottom line is that I was told that I need to have a radical cystectomy. Period.

One possible option is to have neoadjuvant chemotherapy prior to the surgery. For this, we were to consult Dr. Charles Ryan on January 16.

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Hospital Stay

The surgery (TURBT) took place on January 7 and I was in the hospital for three days and two nights.

On the evening of January 7, I suffered a severe pain in my left kidney. Some say it was because I didn’t let the nurses give me enough pain killer medication, but it could have happened even with it. The pain went away soon after a nurse injected some medication in my IV.

The pain has not returned and I made it through the rest of the hospital stay without incident.

It was a blessing to have Rachael prepare kitchari – an Aruyvedic composition of mung beans, rice, vegetables, and spices. Each day, she brought an new kitchari and they were all wonderful. You know how atrocious hospital food can be!

Visitors made my stay in the hospital much more comforting.

On the morning of January 9, Dr. Neuwirth came into my room and announced quite confidently, “You have muscle invasive bladder cancer and you should go see Dr. Maxwell Meng at UCSF” – all in one sentence.

By some miracle or perhaps a sense of urgency, we got in to see Dr. Meng, with CT scans and biopsy samples, the very next day.

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Healing Circle

Alter at the Freedmans
Alter at the Freedmans

On January 5, 2014, eight friends, my wife, and daughter gathered around me for a healing circle and Indian curry dinner.

The ceremony was led by two wonderful friends. Ramona is a Kundalini Yoga teacher who I’ve been close friends with since 1988. Clare is a magical lady who has performed many rituals to celebrate life with all kinds of people, including my wife’s 60th birthday.

The healing circle was preceded by the showing of two healing documentaries: Mind Stories Helped Cure Cancer, and 3 Minute Cancer Cure. Everyone was deeply moved by Micah’s story.

These set the stage for a four part ceremony. The first three stages took place with me lying on the floor and everyone else around me.

The first part was a silent channeling of energy. similar to the 3 Minute Cancer Cure. It was extremely moving for me to feel the love and healing pouring in.

The second part was really beautiful as well. Clare offered each participant a candle to light and invited everyone to offer a prayer or loving kindness blessings to me and the gathered friends.

Each candle was special to me. Many made me cry with tears of joy and I could really feel the love. Others, like Ramona, made me laugh out loud. I felt safe and secure, strong and healthy, and accepted and loved. WOW!

The third part was a kirtan (holy chants) led by Ramona. One of them was waheguru. Waheguru is the Gurmantra or primary Mantra. It refers to the Almighty God; the Creator; the Supreme Soul; the Sustainer; etc.

We chanted together, and I was blessed to be in the middle of everyone.

We concluded the ceremony with the dedication of merit standing around the alter in the photo above. We chanted,

May the merit of our practice benefit all beings and bring peace.

Then eight of us sat down to a wonderful dinner.

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