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as told by Tom Johnson- Bladder Cancer Survivor
In late November 2014 I had lost 35 pounds after retiring earlier that year. I had been taking a blood pressure pill with a diuretic and because of the weight loss I thought the diuretic was too strong making me go to the bathroom all morning after three cups of coffee. I saw my doctor that week and took a urine test to see if anything else may be contributing to the problem.
The test showed minute traces of blood even though visibly my urine was clear. I was referred to my urologist and saw Dr. Eric Klein of the Cleveland Clinic the next week. Dr. Klein is the Chairman of Urology at the Clinic Glickman Tower main campus.
Dr. Klein did a scope of my prostrate and my bladder and found multiple tumors in my bladder. That was on 12/19/2015. I was surprised because I am a non- smoker and do not drink alcohol.
Dr Klein scheduled a TURBT procedure on 12/23/15 at the Beachwood Clinic to remove the tumors and check pathology. The procedure took an hour and was Outpatient. Dr. Klein’s initial prognosis after seeing the tumors is that they were cancer and there was a strong probability I would have to have my bladder removed.
Before leaving the clinic Dr. Klein informed me that he had scrapped over one third of my bladder and did not get all the tumors.
For the next 10 days through Christmas and New Years I was somewhat depressed and concerned how this would affect my life and my family. On January 4th 2015 I received a call from Dr. Klein and he informed me that I had
Dr. Klein said his preliminary findings looked as if the tumors were confined to lining of the bladder and had not gone into the muscle wall. Dr. Klein told me that because of the type of cancer I had, conventional immunotherapy was not recommended and all the research showed this treatment not effective. Dr. Klein basically said if I want to be sure bladder removal was the best option. Dr. Klein said he would schedule an appointment with one of his surgeons as soon as possible.
On January 8th I met with Doctor Amr Fergany and he explained in detail the three types of operations available.
The Neobladder was the obvious choice being the most natural and no use of a stoma. Dr. Fergany said the surgery should be done as soon as possible and the date was set for January 28th. Before I left that day Dr. Fergany sent me to have a CT scan with contrast to see if any cancer showed up in and around my bladder. Dr. Fergany called me at 9:00 am the next morning and informed me the scans looked good and I would not need radiation or chemotherapy prior to my operation.
On January 28th I arrived at the Cleveland Clinic Main Campus at 6:30 am to check in. I new I was Dr. Fergany’s first patient so it wouldn’t be long before I was called. I was called within the hour and was in the room being prepared for surgery.
After all the preparation’s were complete I met with one of the anesthesiologists and was informed what type and how the anesthetic would be administrated. A short time later I was taken to the operating room. There I met Dr. Fergany some of his staff doctors, two more anesthesiologists including one staff doctor. I was able to see the robot that was going to be used and the terminal the doctor would be working at.
The next thing I remember is waking up in a recovery room. The operation took just over 8 hours. As I became more awake in the recovery room I expected to feel more pain then I did, what I felt was more of a soreness than a severe pain. After a short time I was taken to my room where the healing process would begin.
The next three or four days were probably the worst part of the whole procedure. Getting my bowels to work, the cramps and the nausea, the sleepless nights were exhausting. Once everything woke up and I started to have somewhat normal bowel movements things got better quickly. By day five my appetite was back and I was feeling more like myself!
Through my eighth day in the hospital I was encouraged to walk as much as possible this aided in getting my intestines back on track. My advice to anyone having this type of operation is to walk as soon and as much as you can as it speeds up the intestine activity.
On day four in the hospital Dr. Fergany came to see me to give me the good news that all the pathology was complete and the cancer was confined to the bladder. Further, no cancer cells were found in my lymph nodes or any other surrounding tissue. This meant I did not need radiation or chemotherapy and it was a great relief to my family and to me.
My stay at the urology floor at the clinic was as good as you could ever expect. The nurses were attentive and wonderful conversationalists. I had many interesting conversations with the nurses as well as the nurses aids.
Though three of the male aids I had gotten to know were assigned to a different part of the hospital, they all came to say goodbye to me when I was about to be discharged from the hospital.
I was released from the Cleveland Clinic on January 6th, 2015. I went home with a catheter and a Jackson-Pratt pump in my side. I was home for twelve days and slowly learned how to irrigate my new bladder. I did so twice a day. The name of my catheter and drain is the JP Pump.
On January 18th I returned to the Cleveland Clinic Main Campus to have my new bladder evaluated. A die was injected into my bladder through the catheter and a doctor rolled me around to get multiple views of my new bladder. Thankfully there were no leaks and the bladder was healed.
I was sent to urology where the catheter and the JP pump were removed. I was given instructions on how to void my new “bladder.” I was instructed that the need to urinate would be a different sensation. The new feeling would be a pressure not an urgency. It didn’t take long for me to understand what the new feeling was and I was voiding without any difficulty. Who says you can’t teach an old dog new tricks???
I have been home for 16 days and I am working on trying to expand the new “bladder” by trying to hold liquid in for two hours at a time. As the weeks go by I can “hold it” for longer periods of time. My goal is to get to 4 hours in between bathroom breaks. I’m not even close yet but I’ll get there!
I can say that over all I feel pretty good. I have a great appetite and the last four days I have ventured to the store and the post office.
In general I feel better than I ever expected to feel after having major surgery just a few short weeks ago.
I have to give much of the credit to Dr. Eric Klein. After all, it was he who discovered my cancer and recommended the very procedure that surely cured my cancer. I must also thank Dr. Fergany for performing my surgery flawlessly. Both of these doctors operate with class. Both have great bedside manner and I cannot thank them enough for what they have done for me.
I will be seeing Dr. Fergany on March 12th for a checkup and to evaluate my progress. I will update this report at that time. I hope my healing improves so that by summer I ‘ll be golfing and gardening!
Bladder Cancer Survivor