What Not To Do

Where to start? 2004-2005

Periodic slight bleeding and soreness of the lower abdominal region started just a couple of months after hurricanes Charley, Francis and Jean blew over our home here in central Florida. Although we suffered minimal wind damage the rain came in around the windows as if we had left them open. This started the refurnishing and remodeling project and contributed to my delaying seeing a doctor. Prior to this I had not seen a doctor in some thirty odd years except for pre-hire examinations. So assuming I knew best everything was blamed on what I preferred to think of as a stain from lifting and tearing down walls. Then a few months later the pain came. It was not like the, gee, I'm uncomfortable type but the take your breath away and unable to stand kind. By now I was bleeding regular and my wife forced me to go seek help.

Testing consisted of the usual week of cat scans x-rays contrast blood work samples I'm sure we are all too familiar with the process. Last but not least I was scheduled for a cystoscopy with a local urologist. I did not have a clue what a cystoscopy was so what the heck and off I went armed with my x-rays and lab reports to finally find out what was wrong. I had planned on stopping off with my Brother-in-laws for a couple of beers as soon as I was finished. Laying there (disrobed) the nurse starting placing the tubes next to me and I began to get the picture. After the jell was applied in came the Doctor and before the door to the room was even closed, without ever saying hello or even giving me his name, he stated the words we all have heard. "You have a tumor and 90% of bladder cancer is malignant. We are going to schedule surgery immediately". Okay stop rewind I remember Marcus Welby MD and he would have sat you in his office and gently broke the news. While all of this was going through my head my buddy completed the cystoscopy much to my discomfort. The only other words he spoke to me were "See the nurse on the way out to get your pre-op instructions." 10 minutes later I was sitting in my car wondering how I got into this nightmare. It took a few beers before I could even discuss it with my brother-in-laws and we then started to figure out how to break the news to my wife.

Operation Day and a New Doctor. The owner of the practice replaced my buddy (Mr. Insensitive) after my wife stepped in and talked with her boss who is a Doctor and also a good friend of the owner of the practice. All during this time I'm begging her not to make the surgeon mad as he is going to be working in a sensitive area. After surgery my wife told me the everything went well according to the doc and he had removed a tumor the size of two golf balls and we would get together in a couple of weeks to discuss the pathology report. Of course I did have to deal with Mr. Foley for a week and those very annoying spasms. After the first two of them I doubled up on the meds and got through the rest of the week okay. Never had much blood or discomfort just swapping between the leg bag and the other one that the airlines would charge extra baggage for. Does anyone ever fill one of them up? It has got to be at least a 12 pack.

Pathology Report 2005 Bladder Tumor: Papillary Urothelial Carcinoma High Grade. Neither Lamina Propria nor Smooth Muscle Invasion are Identified.

The Suggested treatment was to be a cystoscopy every 3 months for a year then once every 4 months and if nothing recurred eventually once every 6 months. Okay no biggie seems like it was more of a scare than anything life threatening. Time to move on, sorry for the commotion everyone, I got it under control.

Surprises don't we just love them? 3 weeks after our post op meeting I was back in the hospital the extreme pain was back. Apparently the bladder cancer was not the only problem. I had acute diverticulitis and then came the dosages of antibiotics which made me feel weak and sick all the time. Every time I completed the prescription back came the pain. The Gastroenterologists and his surgeon became my best friends during this time frame and a colon resection scheduled. Much to my surprise the Anesthetist picked up that sometime between the EKG for the TUR and the current EKG. I had a heart attack. Go figure. In order to have the surgery I needed the clearance of a Cardiologist. Terms like ECHO, Nuclear, treadmills all new to me filled the next 3 days. Let's not forget the Fleet (cleaning out) process which does not lend itself to getting anything done the day before surgery. So by the time of the surgery I was asleep before the Anesthetist did his thing. (Just to keep the record straight He did wake me up asked a bunch of questions like why I was there. Then he put me to sleep.) 3 days later out of the hospital and 2 weeks after that returned to work. The biggest side affect is the inconsistency of the bowel movements but a small price to pay to be rid of the pain. A heart Cat from the Cardiologist new medications to take and once again time to move on, sorry for the commotion everyone, I got it under control.

Frustrated by the routine and already having missed my 2nd 3 month cancer checkup I began the practice of saying I'll go next time. Needless to say out of sight out of mind and next time continued though-out all of 2006…..2007……..until August 2008. While completing the remodeling (4 year project) of the house there was blood again. Still I did not go to see the Urologist instead I went to see my Gastroenterologists as I was also over-due for a checkup and was having some problems. The bleeding had stopped but inside I knew the cancer was back. To cut to the chase after he poked my abdomen I was in the hospital the next morning and spent the next 72 hours with nothing to eat or drink while the batteries of test were conducted. Colonoscopy, Endoscopy CAT Scan, Chest x-ray, EKG, blood tests the chemical stress test resulted in a referral to a lung specialist, return to my Cardiologist and a life time prescription for Pantoprazola to repair the erosion to my esophagus and stomach. Dreading the next phase I contacted the urologist. The cystoscopy showed 45-50 tumors and another TUR was needed. I had practiced my line I was going to tell the doctor when I would eventually get the scolding for not having returned as prescribed. My answer was "Positive Thinking" and his response as I had imagined "It does not work with cancer" my reply "No Doc I was positively thinking I never wanted another cystoscopy".

TUR December 9th 2008 At first the Doctor felt it would take two operations to remove all the tumors but in less than an hour he completed and I was sent home. This time Mr. Foley and I did not get along. Muscle spasms started on the 2nd day and the bag showed deep red up to the 6th day. Due to my colon resection and pain pills I was constipated and just plain miserable. Someone somewhere needs to address this issue because it was painful and the amount of blood that came around the catheter during my straining was shocking. I've since read the article "Foley Catheter Experiences and What I learned" but that topic is not covered. Upon the 7th day Mr. Foley was to be removed and I must admit I cheated by not drinking anything and watering down some of the night collection before I went to ensure there would be no sign of blood. Nothing was going to prevent his removal………………..nothing. All went as planned until I met Larry the Catheter Guy. Larry is the nice elderly gentleman that escorts you into the doctor area and hands you a cup for your specimen. Today he was to remove my catheter and things went downhill fast. Since I was familiar with the process I was shocked when he requested I straddle over a waste basket. Alarm bell # 1 should have gone off when he proceeded to try and figure out if he needed a number 10 or 5 syringe to deflate the balloon. After pulling back on the syringe the poor guy was not strong enough and yup all of it was shot back in. Although I can laugh about it now I was definitely not laughing then. I remember thinking I needed out of the room and I was about to go out into the nurses/receptionist area with me and Mr. Foley just a swinging and demand a nurse. Larry grabbed the other syringe and much to my joy finally got it right.

What do you mean incurable? 1 week later the Urologist sat down with my wife and I and made the statement "I can try and slow it down with BCG treatments but it is incurable" By this time I had gotten off my duff and started becoming familiar with this new unwanted stranger in my life. Friends and colleagues who had similar experiences were shocked at what I had gone through and recommended other local Urologists in the area. One old friend who went through cancer suggested MD Anderson here in Orlando and I set up an appointment. When I told the urologist I had planned on going there he seemed to hesitate and said well they do CHEMO and I am prescribing standard practice. The BCG treatment schedule was set for 4 weeks out and we left the office. That was the last time I ever went back.


Pathology Report 2008 Bladder Tumor: 1. High Grade Papillary Urothelial Carcinoma. No Lamina Propria Invasion Identified. Muscularis Propria is Present and is Negative for Tumor. 2. Bladder Neck Tissue, Biopsy; High Grade Papillary Urothelial Carcinoma With Underlying Prostatic Tissue, No Lamina Propria Invasion Identified.

MD Anderson wakeup call. There was much hesitation on my part prior to going as I was now spending a lot of time on the internet reading about bladder cancer. The Bladder Cancer Café was part of my favorites list at work, laptop, and home computer. The more I read the more I was sure that my cancer was not that bad as it had not yet invaded the muscle. I felt that I would be taking the doctor away from someone who really needed him. I had pretty much accepted the fact that everything I had done up to this point was wrong so I went. The oncologist just happened to be in charge of Orlando's Genitourinary and Hematology Specialty Section. His opening statement set the tone for the next 20 minutes. "I am not an Urologist. I am a cancer expert." Just the matter of fact way he said it earned my respect. Finally someone who was giving us the facts, time to take notes. He told us a story which consisted of five chapters then he asked me to stand and he drew the entire urinary tract on the examination table paper. He explained that for some reason there was a propensity for us guys to try anything we could to keep our bladders sometime even lose our lives. Yet, removal of other cancers such as breast, lung, prostrate etc was an accepted practice. Due to the aggressive nature of this cancer he recommended I go for a neo-bladder. Even as I write this I've had to pause for a while because it is one of those minutes that you will always remember. He ended my education with a scenario that was hard to argue with. He asked me if I had ever flipped coins. Every tumor that is removed has a fifty percent chance of coming back as muscle invasive. With the amount of tumors I had what were the odds of flipping heads that many times. I had also read Ken Zaremba's article from "Tales from the Trenches" and what I just heard sounded eerily familiar. Without much faltering I made the decision in favor of the neo-bladder. My case was referred to Shands Hospital in Gainesville for further testing and evaluation to determine candidacy for this surgery.

Special Note of Thanks I would be totally remiss not to commend MD Anderson and all their staff for making a difficult time easier. For the first time I had the confidence that a professional organization was working with me as an individual. From the moment I entered the door someone was always there to escort you through process. The whole atmosphere from patients to doctors to staff was refreshing. No Mr. Insensitive, or Larry the Catheter Guy what a relief.

Shands Hospital Gainesville The two and a half hour drive was relaxing and gave the wife and I a chance to relax from the two grandchildren (2 & 3 year olds) that have mystically materialized at our home. Seriously, they are truly a blessing and during those rough times I gather my strength from them. Meet with the Urologist and discussed the case I was still passing blood clots and had difficulty starting and medium irritation midway through urination. He felt I could continue to retain my bladder in spite of MD Anderson diagnosis but the final decision would be dependent on the pathology report. He scheduled a poke and peek for February 19th with biopsies of the bladder, prostrate with x-rays of the ureters tubes. The doctors and staff were again friendly, informative and all in all professional. The ride home was strange. Certainly what we had just heard was good news. It had to be as my wife seemed to be so much relived. But the coin flipping thing kept going through my head. As a kid I had lost a lot of milk money that way and this time the stakes were higher. Not to bust her bubble I kept quiet and decided to wait and see what the 19th brought.

February 19th Shands Hospital: Woke up and the first thing I did was check to see if there was a catheter. Yup sure enough this was not what I wanted. One of the Urologists came in and injected something into the catheter wasn't BCG as hard as I tried to recall I was still to hazy to memorize the name. He said he would be back in an hour. I have 20/400 vision in each eye and without my contacts or classes everything is basically a blur. But I could sure see the clock…5 minutes……..10 ……… so on and so forth until an hour and a half later when he returned. During this time I amused myself by listening to the nurses and their fussing cause my Urologist had not capped my catheter after he left. Sounded rather familiar to what goes on around my house. My wife finally was allowed to see me after I was relocated to the discharge observation area. She had been told by the doctor that 7 more very small tumors has been found and removed but all in all everything looked good. This bit of news was frustrating to me as it had only been two months since the 45 were removed but this conversation could be held on our March 2nd post-op appointment. All that remained was to pee and get back home. After drinking a Pepsi, Sprit, 2 bottles of water, coffee and still as hard as I strained there was nothing. Sonogram showed nothing in the bladder. Well true to form every time I anesthesia or pain meds my digestive tracks locks up. An IV was attached and opened up wide and before long they got what they were looking for…boy did I void. Before I escaped there was just one little more surprise left. I stood up and the whole room spun around my blood pressure went up my pulse fell, and body temp went way down. Between my shacking and the room spinning the poor nurse had a mess to clean up. My wife Pat had just left to get some food and I had been sitting up and joking around, when she returned I was down for the count and under a pile of blankets. Her expression portrayed the emotional strain she as the care giver was under. For the very first time I was truly angry at myself. I have always considered myself a fighter, took pride in having an inner strength that allowed me to overcome all obstacles yet I was letting down the most important person in my life. Not sure if everyone goes through it but I hit an emotional wall right there and it was time for a reality check. Anna, not sure if you will ever read this but thanks ever so much. Words will never express my gratitude for the extra effort on your part that night..

March 2nd 2009 Post-Op Appointment: Urologist leaning toward BCG treatments but will support the neo-bladder if that was the direction I wanted to go. Ugh another decision. I called the Oncologist and he had corresponded with the Urologist. (Both served at MD Anderson together.) He was not as adamant as our first visit. However, both of them concur it is just a matter of time before the bladder will need to be removed. The wife and I are both confused; the last few months seem like a life time. Okay let's give the BCG a chance. I was now referred to a local Urologist for BCG treatments so I don't have the drive to Gainesville.

March 16th: 2009 New Urologist also worked with the others at MD Anderson. If I keep this up I'll meet the whole graduating class. Maybe they will let me join the fraternity. Told me my tattoo was older than he was, now that's a piece of information I'm not sure I needed to know. If first impressions hold true than I'm sure I'm in good hands. Having pain and a difficult time urinating since last TUR so one more cystoscopy is scheduled for the 23rd before treatments begins. I'm having a lot of doubt if I'm going in the right direction. I've read a lot more good things about a neo-bladder than complications. The best is being cancer free. I also understand there is the possibility I may wake up with an alternative if something is discovered during the process. Well if you have read my story you know I have done everything wrong to date. It is just so easy to get lost in the medical field.

March 23rd 2009 A major disappointment I do have a UTI but is not the garden verity. New antibiotics and everything pushed back a couple of weeks. Now I am scheduled for another CT scan prior to the next poke and peek. If he finds anything another visit to have them removed. Urologist answered some hard questions from the wife and he showed us the pathology report from Gainesville. The seven tumors were low grade from the February 19th TUR. Is it possible to go from high grade to low grade? So from his stand point there is not the same urgency I have in at least getting something started. I guess it is small potatoes in the grand scheme of things when you have bladder cancer.

al simons Author