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.