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.
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
Cystectomy – partial or radical
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.
I was awakened the next morning at around 6:00 A. M. by … guess who? A nurse of course who wanted my vital signs and other data. The catheter was supposed to be removed by 7:00 A. M., but the nurses decided to wait until Dr. Neuwirth showed up and voiced his opinion.
I was visited in rapid succession by Dr. Belknap and Dr. Neuwirth. The latter found the nurses’ objection to removing the catheter rather lame and ten minutes later it was gone. I asked him, “On a scale of one to ten, how do you rate the surgery?” His reply, as he got up to leave, was, “Ten, of course! I always do ten!”
There wasn’t much else he could tell me until the biopsy was completed and the pathology report issued. Apparently, he was able to remove all of the tumor that was visible above the muscle layer of the bladder and he also removed additional samples around the tumor and at remote sites.
A few hours later, I was on my way home! What a shock! Four days earlier I was playing tennis. Now I was laid up for approximately three to four weeks, and I was still pissing blood. What else lay in store for me?
Fortunately, there were a large number of well-wishers calling, sending cards, and stopping by. When I arrived home, there was a gorgeous bouquet waiting for me on the porch. It turned out to be from the RND group at NGC! I was really touched by their efforts and concern.
That night, I suffered tremendously from the pain of the epidural. However, one call to Christophe gave me the information I needed to relieve the pain. He suggested three Motrin along with the vicodin.
My refusal to sign the operation afforded me another whole day of waiting. In the morning, I had visits from Dr. Belknap and Dr. Neuwirth, both of which were very helpful in pointing out the pros and cons of the alternative anesthetic methods, but I still hadn’t made up my mind. I wanted to speak with an expert.
Dr. Neuwirth tried to prepare me for the best case scenario, which would involve complete resection of the bladder tumor followed by quarterly inspections with a cystoscopy and possibly coupled with chemotherapy agents inserted directly in the bladder. I found this discussion rather informative, but would have preferred a more accurate reading of my tumor.
Since my daughter was ill, my wife couldn’t be with me the whole time, so I spent the day receiving phone calls and visitors, and listening to classical music, and Dr. Rossman’s tape. Since I couldn’t eat or drink, my thoughts continually turned to food, especially when my roommate ate his meals. In between time, I continued my meditation and visualization practices, which kept me from getting to anxious about the ensuing operation.
At around 3:00 P. M., my wife returned to the hospital, just in time for the meeting with the anesthesiologist. His name was Christophe Dannello and he was very nice. He carefully explained the various options, and with his guidance, I decided to go with the epidural.
Around 6:30 P.M., they came to wheel me off to surgery. I grabbed Dr. Rossman’s tape and headed off to the operating room. I was given a sedative intravenously and placed on the table. A moment later, a small needle was applied to my lower back and I was turned over and placed into position. The oxygen feeder was placed in my nose and my legs were positioned in place for the surgery.
Then… I was gone! I woke up in the recovery room and spent what seemed like only fifteen minutes there. I was taken back to my room and my wife was with me for the next half-hour or so. Then she had to get home to the children, so there I was, lying flat on my back with a catheter in me. I started to feel pain from the epidural and was given “candy” – vicodin. This controlled the pain.
I proceeded to do my “mind story” and had a fairly good night sleep until I was rudely awakened for vital signs around midnight. Luckily, the rest of the night was uneventful, even though I was leaking blood through my catheter.
I woke up around 8:30 in the morning and called Dr. Belknap. I got his answering service and called the physician on duty, Dr. Jacoby. He set me up for an appointment at 10:45 on a Sunday morning! I then proceeded to phone Dr. Belknap at home, and he assured me that seeing Dr. Jacoby was the right thing to do.
After taking a urine sample, which, by the way, looked more like a blood sample, Dr. Jacoby examined my prostate gland and left the examination room to call the urologist on call at Marin General Hospital (the other MGH!) who happened to be Dr. Neuwirth. Dr. Jacoby strongly recommended that I head off to the hospital so that Dr. Neuwirth could run some tests to see what was causing all this blood.
We arrived at the emergency room of MGH at around 11:30, armed with a bag containing the urine sample, in perfect time to meet Dr. Neuwirth. Can you imagine not having to wait four hours in the waiting room! He walked away with the bag and returned in less the 10 seconds. “I want to admit you and do some tests,” he said.
After that, in short fashion, I found myself in a typical hospital gown, lying in bed with an IV started in my left wrist. In less than an hour I had X-rays, a CT scan, and an intravenous pyelogram, or IVP, which is an x-ray evaluation of the urinary tract. All of these tests were expected due to the excellent coverage of the hematuria web page.
The results were not favorable. From the CT scan, it was obvious that I had some kind of tumor at the base of the bladder and therefore a cystoscopy was necessary. This was to be scheduled as soon as possible, but actually would never take place on Super bowl Sunday! What medical team would be willing to give up their Sunday evening, anyway?
So there I was, back in my bed, just in time to watch the Super bowl. By then, the phone was ringing off of the hook, and my friend, Dr. Rossman came to visit me to look into my condition. He is an outstanding physician in his own right and specializes in interactive guided imagery, and acupuncture. He brought with him a new guided imagery tape for pre-operative patients in which he collaborated with Stephen Halprin. I also had a few other visitors, including my sister and her husband, my son, and another good friend. I think the gentleman I was sharing the room with was getting fed up with all of the phone calls. I knew I had a tremendous support group behind me. This, by the way, is one of the important factors in helping yourself to a speedy recovery – having a support group of people who love you unconditionally.
After everyone left, I settled down and listened to Dr. Rossman’s tape. This helped me to relax and visualize some long range goals, such as playing tennis four days a week once again. With meditation and visualization techniques, I was able to sleep most of the night, barring interruptions from nurses who wanted to suck more of my blood.
One interesting thing that happened that night was that one of the nurses wanted me to sign my operation consent from. After reading it over, I decided that I needed to speak with an anesthesiologist first, in order to determine whether I should go with a general anesthetic or an epidural. The nurse said that he would get one up to my room, but one never came. The next nurse on duty also tried to get me to sign, but I still refused. It took them until 3:00 P. M. the next day for one to come, and I missed an opportunity for a 9:00 A. M. surgery.