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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Catching Up

Here I sit, ten days after my last entry, recuperating from two successive weeks of surgery.  Last Friday I spent two nights in the hospital at the University of California in San Francisco (UCSF), one of the best teaching hospitals in the country.  The surgery occurred on Friday, October 10 and lasted about two and one-half hours.  I was in the recovery room for about three hours.  The surgeon, Dr. Norton, excised both the schwannoma in my leg and the lipoma in my shoulder blade, both on the left side.  The stay in the hospital was made much less unpleasant by the kind and courteous staff, and, in spite of much pain, I remained comfortable.  At one time, last Saturday, there were ten visitors at once!

Getting up the stairs on Sunday morning was no picnic.  I had to sit on each stair and push myself up to the next one with my good leg.  I couldn’t use crutches because of the lipoma incision.  I’ve spent practically all of the last week lying in bed, doing mindful breathing, reading, and trying to get some work done.  There was a lot of excitement this week, as Network General and McAfee are merging, and I missed all of the parties and announcements.  On Thursday, I finally went out to see Dr. Norton, and yesterday I managed one half-hour sitting by the water in Sausalito.  Dr. Norton said that the preliminary report on both biopsies was that they were benign.

I’ve had a mild case of post-operative depression, as I feel much like an invalid, having to use a walker or crutches to get around.  Everything is starting to move forward now, however, and I expect to take part in some social activities this weekend.  Wednesday, I see Dr. Norton and perhaps have the first of a series of BCG treatments in my bladder.

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An Unhappy Birthday to Me!

Today I turned 58, but what a miserable day it was.  As you may know, last Friday I had my cystoscopy and biopsy under anesthesia at Marin General Hospital.  The results were not favorable, but also not so bad.  There was some microscopic cancer still on the bladder wall, but Dr. Neuwirth thought that it could be removed with one or two six week treatments of BCG.  The cancer was down to grade I or II, so, all in all, it is slowly going out of my system.  The BCG treatments start next Wednesday.

This morning, we went to the University of California at San Francisco (UCSF) to meet with Dr. Norton about the schwannoma.  I expected a forty-five minute visit followed by a nice lunch at the Cliff House and a stroll through the de Young Museum or the Palace of the Legion of Honor.  This would have been a lovely way to spend my 58th birthday, but Dr. Norton changed all my plans.  He wanted to remove the schwannoma on Friday – the day after tomorrow!  Dr. Gullion supported his plan, and it seemed reasonable based on getting that thing out of my leg before the BCG treatments begin.  I was in a state of shock about the urgency in his analysis of my problems.  He went so far as to say that the lipoma on my left shoulder blade should also come out.  So I spent the rest of the day registering for the surgery on Friday.

I was a bit disappointed because I had worked so hard to get appointments with neurosurgeons next Monday.  I thought that because the schwannoma was a nerve sheath tumor, it should be removed by a neurosurgeon.  Dr. Gullion did not share my ideas about the neurosurgeon.  He thought that Dr. Norton was better because he understood the oncology.  Dr. Norton has done many of these, so I feel confident in him, but the schwannoma will be gone before I have a chance to see the other surgeons.

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A Confusing Day with Surgeons

When I first spoke with Dr. Gullion about the schwannoma, he referred me to Dr. Warren, a doctor at UCSF to do the surgery.  On Monday, his office called me to say that Dr. Warren was going to be out of town for the next few weeks and recommended that I see Dr. Norton.  Well, in tune with my attitude about doing the best possible research, I didn’t want to see Dr. Norton without checking into the matter more fully.  So, I asked Dr. Gullion what he thought, and he wanted me to speak with Dr. Warren first.  Dr. Gullion finally called me back this morning at 11:00, while my appointment with Dr. Norton was at 10:45.  I also had an appointment with Dr. Warren, so I missed both of them through all of the confusion.  The point of all of this is that I want to be very careful about who keeps me from playing tennis for any period of time due to the surgery on my leg.

I finally took some time away with my wife over the weekend.  After seeing Leslie Davenport on Friday, we took off to Gualala, a small town on the Mendocino coast.  We spent two nights in different motels, each equipped with a Jacuzzi in the room.  We had a wonderful time.  The beach at Gualala is beautiful and awe inspiring.

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Thay’s Lecture

This evening, we went to Thich Nhat Hanh‘s lecture at the Berkeley Community Theater along with 3500 people attending the lecture.  It was fortunate that I planned to attend this lecture because not all of the news I got today was good.

Dr. Gullion had the results of the cystoscopy and the needle biopsy earlier in the day.  While Dr. Neuwirth saw no visible signs of cancer, the wash of my bladder revealed atypia cells and other carcinoma cells, which could indicate that there is some microscopic cancer in my bladder.  However, Dr. Halberg and Dr. Huang both assured me that these cells could be a result of the radiation.  As a result, I have to go in for a biopsy under anesthesia on October 3 to have my bladder checked out.

The results of the needle biopsy of my left thigh were inconclusive.  The preliminary indication is that I have a schwannoma, which has to be surgically removed in order to accurately identify it.  This means another set of doctors at UCSF, and perhaps a three night stay in the hospital there.  I have to be able to walk on my leg before they’ll let me out of the hospital.

I had an opportunity to talk all of this over with Leslie Davenport after seeing Dr. Gullilon.  She was very helpful, but I had already seen that although these procedures are complicated and time consuming, neither one of them are extremely dangerous.

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