A year after a radical cystectomy with prostectomy, I received the CT Scan report that there were no indications of recurrent disease. This was good news, and I hope for the Biblical 7 years of similar reports.
June 1999, 55 years old and life is good. A brutal job, wonderful wife, stock market on an upswing, golf game improving with lessons – life is good. Then at home in the evening I discover hematuria – or should I say, blood in the urine. I pee crimson urine. My wife is out of town on business. I tell myself that I am not right. Not wanting to wake up dead, I decide to go the Hospital Emergency. Hospital Doctor looks at urine sample and comments that it is ugly. He confers with the Urologist on call who advises my release and instructs me to see him in the morning in his office. Told to go home, I sense relief. I see Dr. V. in the morning. He tells me that because I am over 50, a smoker, and have blood in the urine, I have a bladder tumor until proven otherwise. I get my first cystoscopic examination. I had no idea that could be done. I recall Dr. V. stating that I may experience some discomfort, but WOW, there was no way I could have anticipated the "discomfort". Doc saw the tumor on the left middle of the bladder and took a biopsy that turned out to indicate a "low grade" status. The tumor was removed some weeks later, and postoperative comments from the Dr. were guarded. I had to stay in the Hospital overnight, which was the first of negative indicators. He asked me to come in the following week after the biopsy. When I called for an appointment, I was told that ordinarily the patient comes in weeks after surgery. This was one of several more "indicators" that things were not good. I hit the Internet to find out about this bladder cancer and gained a lot of information, and fortunately happened upon the Web Café, which turned out to become an important source of information and personal support anchor. From the information on the Internet, I expected a campaign of bladder cancer treatments, but certainly nothing like removal of the bladder.
Joan and I report to the office of Dr. V. (Last appointment of the day). Another indicator. We sit with Dr. V. who opens with the fact that we have important information that calls for some decisions. He explains that the tumor was high grade and late stage. The tumor is invasive into the muscle wall. The survival rate with this type of tumor is 15% after 3 years. I am stunned and can only say, "shit". This is the only thing I say as the Doctor talks. Joan takes my hand as the two of us listen to more. Dr. V. explains that there is a need for a cystectomy and describes the techniques with a stoma, external bag and so on. I state that I want the least complicated procedure. He responds that there is another alternative, and that is to see Dr. Donald Skinner at USC who can install a continent diversion pouch. He explains that he, Dr. V., performs cystectomys about four times a year, but Dr. Skinner performs four a week. Dr. V. explains that he worked with Dr. Skinner in the past and that Dr. Skinner pioneered the procedure in the U.S. in the early 1980’s. Joan asked Dr. V. what he would do if it were he with the condition, and Dr. V. stated that he would turn up on the doorstep of Dr. Skinner. Since we lived in South Carolina, I had to get clarification of "USC" – it was of course the University of Southern California, not University of South Carolina. Joan asks Dr. V. if he would manage the post operative treatment, and he replies with a definite "yes". I then ask Dr. V. if he would intervene with Dr. Skinner on our behalf. As we were in the general office area with the staff on our way out, we hear Dr. V. instructing his secretary to get Dr. Skinner on the telephone. The staff was prepared for our visit. It was clear that the mood, knowing the purpose of our visit was very sober. We discovered later that Dr. V. had lost his wife to cancer in the recent past, and that memory of cancer lingered with the staff.
I must note here that Joan is a very intelligent, mature and strong person. We have had a wonderful relationship since 1985. She is a practicing attorney, but her core identity is mother, grandmother, and spouse. During the next year of numerous treatments (tests, surgery, tests, chemotherapy, procedure after procedure), Joan looked after me with the protective character of what I called a "She Wolf". Joan is, and always was, very courteous, friendly, and kind to everyone, but I could see the protective look in her eyes. Nothing bad was going to happen to me because she was always there with me every step of the way. I should add that we both instinctively knew that we were going to take an aggressive attack to the treatment of the demon cancer. It was not negotiated or debated – we both knew we were preparing for radical and aggressive approaches to save my life.
After the diagnosis in July I continued to work but could not focus well, had thoughts of my life ending soon, and from time to time I would be at work but had no recollection of the past several hours. I would spontaneously break out in a sweat, and had a chronic ache in my gut. Several days later, Dr. V.’s nurse Tina called me at work to set up a CT for Dr. Skinner. It was important to see if I was a candidate for surgery at USC – Norris Cancer Center. Bottom line, there would be no surgery if I was riddled with cancer. I told Tina that I was having a hard time with the emotional roller coaster I was on since the diagnosis. Tina told me that I was probably still in shock. Then it hit me, yes, I was indeed in shock. Knowing it I was then better able to deal with it. Shock is expected. Now these strange things happening in my mind made sense.
After the CT, Tina called to ask that I contact Dr. Skinner’s office to arrange a date for surgery. In the meantime we confirmed that my insurance would cover Dr. Skinner and USC – Norris. Insurance coverage was a blessing. We called Dr. Skinner’s office and set up a surgery date for early September. Joan quizzed the secretary about Dr. Skinner and asked the number of these procedures Dr. Skinner had performed – the secretary mentioned; "about 2000". This gave Joan and I some comfort. We did not know the status of Dr. Skinner at that time, in terms of his standing in the bladder cancer community. Through the Web Café I got an education in many ways. There we learned about Dr. Skinner, the procedure, things needed to prepare for the trip to California and the surgery, and much more. The Web Café also served as an outlet for my emotions. Things were moving fast, fear was a very real factor. Through Wendy, Roni Olson and others I started to become better armed for the battle in September. Joan arranged for accommodations in LA. We had been advised of the routine and expected to spend the month in LA. Joan and I were busy with our jobs and preparation for surgery. It was a very emotional and tiring time. We knew it was the beginning of a long emotional and physical battle, and there were still a lot of unknowns to face. I also recognized that I was drawing strength from those who wished me well. The transfer of strength from friends and associates is something I was not aware of until then. It is a very real and valuable source of strength.
The weeks before surgery moved far too fast. Then Joan and I headed for the West Coast, first a swing through San Francisco to meet with family and friends. There was no time to feel sorry for myself, and it is simply not my style. But there was an element of apprehension. We knew we were in for one hell of a fight. The time to visit and dine and laugh with friends in San Francisco was wonderful, but still, time was moving far too fast. We embarked on our travel to LA when our time was completed in San Francisco. We had trouble with flights and ended up going to LA through Bakersfield. Time stood still in Bakersfield. After hours at the Bakersfield airport, I was anxious to get to LA.
We got settled in LA on Monday, and surgery was scheduled for Thursday. This is too fast. I call upon a lot of strength given by others to maintain a strong balance. We went to USC Norris on Tuesday to meet with Dr. Skinner. We are in the waiting area where I see a man walking in a robe carrying a urine bag – a recovering cystectomy I suspect, and I am envious that he is beyond surgery. I see a child in a wheelchair, and recognize that that little fellow has a problem; I do not have a problem. "Problem" is seen all around me. I do not have a problem. I have a condition that calls for aggressive action to defeat. The view in the waiting area is sobering. The world of cancer is hitting me. The world of cancer is tough and testing, both physically and mentally. But, Joan and I have arrived at USC Norris – let the battle begin, although I knew the war was already long in progress.
Dr. Skinner is good. His first words to me were that I was a bad boy – the smoking. He gave me a cursory examination. What was to be known about me physically was already known. He took time to explain the procedure, things to expect, the statistics, DNA P-53 testing and more statistics, and was wide open to questions and just things that were on our minds. Dr. Skinner is good. We then toured the facility and met with his staff. Dr. Skinner, his immediate staff, and the Norris staff are a very impressive group. They practice a high standard of professional and personal care for the patients. Joan and I were treated very well during the introduction, and it was very comforting and helped us maintain balance and strength for the fight.
Now it is Wednesday admission in preparation for the Thursday surgery. My mood is sober but I continue to compensate with humor. Humor is my balancing act. The more the stress, the more I depend on humor to maintain balance. Of course it is all natural. When I am not under stress, I still love humor. Over the past year I have collected a number of things one does not want to hear while they are under medical treatment. All have happened to me. A sampling – "You may experience some discomfort with this." "Now hold your breath." "Now relax." "Now turn over on your left side and bend your right knee." "I’ll have to get someone else for this." Procedures that include the word; "Rectal". "We’ll have to go into the other room." There are others that escape me at the moment, but they continue to come into my life, and when they do, I smile and laugh inside, and remember.
Wednesday pre-operative preparation is x-rays, blood tests, and numerous "shooters" of castor oil. Got to get the bowels clean to make a neobladder. Antibiotics are duly administered. More castor oil shooters, straight up, not on the rocks. I get fitted for a stoma just in case the urethra is found unfit for use (it was fit). I learn to catheterize myself. This is not a fun day. We meet a couple nurses from Denmark who are at USC Norris to learn more about the way we do cystectomys, in particular the patient recovery. We hit it off in an instant. They are smart and have a great sense of humor. They will follow my operation and recovery. Hell, I like the attention. I will be an internationally recognized patient. The two ladies are indeed wonderful people with a professional mission, and a personal perspective of the patient. Joan stays late this evening. We share the elevated tension. I accept help in the form of a yellow pill to sleep. Time is moving far too fast.
I recall the morning and Joan being with me. It is very early. I’m given "something" to relax me. I’m taken to the operating room preparation area. It’s smaller than I expected. Joan is with me. Finally I get the "Knock Out" and the next 24 plus hours are a gap in my conscious being. Next thing I know is a sense of being wheeled someplace and Joan telling me that I hit a 300 yard drive. She told me I hit a "Hole in One". I knew post-operative I would recognize Joan’s voice only, and she sent me the right message. Do not underestimate the conscious portion of the mind that monitors the surroundings at all times, even when under the most effective of anesthetics. Joan can reach my mind regardless of the potency of any anesthetic.
Post Operative at USC Norris
Surgery was 10 hours, then 2 hours in recovery and another 12 hours in intensive care. Intensive care was predicted to be 24 hours, but I must have made it over the bar in 12. In any event, I was back in my room the next morning. I have a recollection of the Doctor pulling out some tubes and it was sort of a celebration. I was the washed-out, totally exhausted person you can imagine. It was Major Surgery as advised early on. Pain management was effective. After a couple days I was given control of pain medication – the "mash the button" when you need it technique. I was up walking the first day back in the room. I remember the constant advice that it is best to get up, move and wake the bowels. We walked the hospital hall that first day, not well, but we walked it. I was so weak and tentative with an IV rack, and tubes draining every sphincter, and a number of drains in places where there were no sphincters – I call them my knife and bullet wounds.
Neobladder irrigation was an interesting experience. It told me that these Norris people sure know their business. Jesus came in every 4 hours to irrigate my neobladder. He would vary the syringe flush to include a couple "turbo" shots to break the mucous loose. I had no idea that two feet of intestine produced so much mucous. Mucous is one of the less pleasant topics of members of the Neobladder Club. After the first time Jesus irrigated me and explained the process, I said "Thank you Jesus." When he left, Joan was kind enough to point out that his name is pronounced; "Hay Suse".
Pain management continued to be quite good. The Doctors come and go throughout the day. The level of professional and personal care is very high. A couple Resident Doctors do a lot of the work, and Dr. Skinner and others come in from time to time. They all appear to be pleased with my progress. Joan is with me every day. The Norris Staff are taken to asking her how her patient is doing. It is clear the Joan is attending very closely to my well-being. She certainly helped me get on my feet and walking every day. We walk more and more every day until on the 5th or 6th day we are in the Norris Lobby, and walk outside to feel the sun. It was an emotional event to feel the sun and look at the flowers in the courtyard.
We got word that the lymph glands were clean (>20). We were to hear more of the P-53 gene testing later. Overall, things were looking hopeful.
Hotel Recuperation Till Final Exam
We left Norris on the 7th day following surgery. It took time for the bowels to wake. Leaving Norris for a 3-week recuperation at the hotel was a milestone. Joan had the hotel room all set up with the double bed for myself, and she set up the sofa bed for herself. It will be tough enough for Joan to rest with one eye open at all times. Best I get the double bed, and being a Big and Tall, I used all the bed to strategically and carefully move from side to side with the mega-catheter and super drain bag connection. Joan set up her computer communications table to keep working her job. This was a tough time on Joan, though there were no complaints. Day in and day out, Joan worked her job, irrigated my neobladder every four hours, cleansed and changed dressings, and kept a close eye on me. Her only breaks were a daily jog outside the four walls. This was not a room with a view.
I went outside each day to walk. First half way down the block a couple times a day. I’m not sure what the residents of Beverly Hills thought of me walking the street toting a urine bag, but it did not matter to me. I just felt so self-righteous getting out and walking. Every day I gained more distance until after a week I made it all the way around the block. There was a slight incline at the end that just exhausted me. I was so weak it was pitiful. Still, I was bound and determined to walk. One day it rained so I walked the hotel halls. Walking was good for the body and the mind. Near the end of the three weeks the catheter was beginning to irritate and just plain become a nuisance.
We had the Visiting Nurse service about twice a week during the hotel stay. One of the ladies was helpful, but overall, they added little value. Still, I’m inclined to recommend their use. It was good to get the reassurance during the early visits that everything was going fine. They would have served a valuable service if there were indications of complications. Fortunately, we had no need for dealing with complications.
Toward the end of the three-week stay in the hotel, we were anxious to go back to Norris for the "Final Exam" and for release to return home to South Carolina.
Norris Comprehensive Cancer Center – Final Exam
Back to our friends at Norris for an overnight stay. Blood and urine tests, a mega butt shot of antibiotics. We get a working over by the doctors and a lot of instructions on managing incontinence. When they pulled the catheter I was told, "Now take a deep breath." Oh yes! Pulling the catheter was a definite noticeable procedure. The nurse asked me if I wanted to see it, and I said no thanks. The neobladder was injected with 60 cc of saline prior to the pull, and I was instructed to immediately get up and sit on the toilet where there was a measuring cup to determine the amount of fluid I held. I lost it all getting up. Hell, I had a 5/8 inch, metal reinforced catheter in me for 4 weeks – how in the hell am I going to hold anything in my neobladder for a millisecond? Don’t they know I no longer have a bladder sphincter? My focus was on diaper training. They also explained the value of the Kegel Exercise to develop the muscles for continence. I was assured that all patients gain continence, but I have my doubts. It just does not make sense at the time. Still, from that day on, I did five repetitions of 10 Kegle exercises a day.
I get word from Dr. Skinner that the P-53 test was positive. I asked what that meant, and Dr. Skinner stated that Chemotherapy is indicated. I was a bit disappointed – the war continues and the next battle is identified. Dr. Skinner said that he would talk to Dr. V. in South Carolina and discuss a protocol. I later discovered they settled on MVAC, three installations of one month each. On the other hand, Joan was kind of glad that I would get Chemotherapy because it was one more assault on the demon cancer. She saw it as "something" more to beat the cancer. I understand, and fundamentally shared her point of view. In any event, the immediate battle plan is laid out.
Leaving the Norris the next day I looked back till it was no longer visible. This was a major milestone. I was grateful for their help, but I was glad to put this stage behind me. Joan and I are anxious to be home again.
Home To South Carolina
It was an exhausting trip for both of us but we both felt a great sense of relief when we returned to our beautiful open home, away from the four walls of the hotel in LA. I knew I dropped a few pounds in LA, but was surprised to discover it was 50 pounds. Still, I had 200 pounds to sustain me. Since the surgery, my voice sounded like the Godfather. There must have been a bit of irritation from the breathing tube during surgery. The Godfather Voice lasted a month more at home.
I was still a pitiful sight. Legs were weakened. My life was a focus on Kegels, walking, diapers and briefs, resting, and visits to Dr. V.
Incontinence was a major chore when I got home. I had total incontinence that called for briefs during the day, and diapers at night. I set the night alarm for every three hours to get up and change a loaded diaper. My bed was the guest bed with special protection. It was the only way I could deal with the night – not bothering Joan all night. After some few weeks of total incontinence, in spite of exercises, I was convinced that continence would never come. I came to talk to Ken in Seattle on the Web. Ken was half a year ahead of me and was kind enough to coach me through the incontinence. As Ken predicted, all of a sudden, I’m continent. It happened over a period of a day or two. I am still amazed, and very grateful to Ken who helped to maintain hope and coached me through the process. The support and guidance of others who have gone before us is invaluable as we struggle along the journey.
In early November I return to work on a limited basis. I essentially increase attendance each day from 4 hours to 9 hours in a matter of a few weeks. I’m feeling better, but still weak as a baby. I work, but come home and often eat and then go to bed at 8:00 pm to get ready for the next day. In any event, 9:00 pm becomes the standard bedtime.
All the time I know that Chemotherapy is on the horizon. We are looking for resources, including the Medical College of Georgia in Augusta that is only 20 miles away. We settle on the Carolina Cancer Center here in SC. We met with Dr. G., the Oncologist, and after our initial meeting that lasted over one and one half hour; we were convinced that they were the site of our next battle with cancer. They proved to be an extraordinary source of a high standard of care for patients on a professional and personal level.
Because the MVAC is tough on the kidneys, Dr. V. ran a test on my kidney flow. I reported to the hospital where the isotope was injected and we got live pictures of my kidney flow. Dr. V. shows up during the test to see it first hand on the screen. This was impressive to me. He was headed to surgery and took time for me. He expressed concern about the low flow in my right kidney, and talked about installing a stint to assure good urine flow and protection of the kidney during chemotherapy. He asks me if I have time to stick around if he arranges another procedure. I told him I have no place to go, and will stick around. After I complete the kidney test, I go to the waiting room and one minute later I am taken to a room and prepped for a stint. Dr. V. is in surgery and conferring with the Stint Doc over the phone. Next thing I know I am on a table, given a local in my back, and the Doc sticks a tube in the upper portion of my kidney. Now I have another drain coming out my back. I didn’t know they could do that. I had the morphine button to mash when I needed it, but pain was manageable. I asked to take the unused morphine home, and discovered that the nurse had no sense of humor. When I went to see Dr. V. a couple days later, I was asked to give a urine sample. I asked if they wanted it from my left kidney, or my right kidney. They settled on the left kidney still draining through the neobladder. Dr. V. installed a stint the next week in out-patient.
December 1999 is the first of three one-month installations of MVAC. Each month is four visits. Day one, day two, day 15, and then day 21 till the next month day one and two. In December, day one is a "push" of a chemo, and day two is a full day with the Cisplatin drip. It was a Monday and then Tuesday. Friday I attend a work holiday dinner and feel okay. I wonder what the big deal is by then. I feel fine on day five. Then the next day, Saturday, it hits me. I’m in bed for 20 hours on Saturday, and 22 hours on Sunday. This is not good. This is tough. Everyone reacts differently to chemotherapy. I’m taken out totally after a few days following the first Cisplatin.
During Chemo, I was cathetered by the Urologist Technician, Bob, because the neobladder can reabsorb the chemo. I had a cath to move the chemo through the neobladder to avoid over dosing. This meant a visit to Bob before the chemo to install a cath that was designed to stay in for a period of four days till the chemo flushed. Every time Joan and I went to see Bob before chemo, I felt like a dog being taken to the vet. But it was all in the interest of killing the demon cancer. It was still a tough process. Joan was with me during the cathing prior to chemo. Joan gave me the sympathy I needed. Hey – Yes, I needed some sympathy.
Chemotherapy was a tough process. A physical roller coaster. I have never been stuck with needles so much in my life, and some days were tougher sticks than others. Only those who have been through chemotherapy can understand the silent prayers as the search for a good vein starts. Some days I had a heating pad on my arm to aid in finding a vein. Some days I came home with four blanks bandaged before they found a live vein even to just take a blood sample. This is just part of the unpleasant experience of chemotherapy.
The three months of chemo were very unpleasant. Still, I had great care from the Clinic. I had blood boosters between treatments to keep the blood in balance. Side effects were mostly fatigue. Pills that cost $10.00 each, but were miracles cutting the hard nausea. My heart goes out to all who go through chemotherapy of any kind. Cisplatin is in my opinion the Mother of all chemos. It knocked me on my ass. MVAC is tough, but hopefully, a good cocktail for bladder cancer.
I worked when I could during chemo but I was never fully functional. Some days I left soon after arrival because I could hardly move. My co-workers were a great support for me. In retrospect, they were a major source of strength. They looked out for me. I work in a brutal environment, but with the greatest people in the world.
I don’t know how to close out the Chemotherapy Chapter other than stating that it is a tough process that will test one’s will.
One Thing After Another
After chemotherapy I had the stint taken out of my neobladder. I then discovered that the flexible scope was indeed flexible. After failing to grab the stint with the flexible scope, I was taken to the "other room" where Dr. V. used the rigid scope. Lord! What an experience. I ended up going to outpatient where they put me out to get the stint. We have to deal with bacterial flairs from time to time but things have pretty well settled down to a symbiotic relationship with Staph Aureus.
This is as good a place to end this tale as any.
If you are reading this, there is a reasonable likelihood that you are in a battle with cancer. I wish you well, and the strength to be tougher than the cancer. Take lessons from others who have gone before you. My lesson is to be tougher than the cancer.