Re: The first 4 months part 2
On the day of the surgery I arrived at hospital 5:45 AM. and went to pre-op. I waited in bed for the OR nurse and anesthesiologist. I went to surgery about 7:40. About 9:10 my wife talked to my Dr. about the surgery and she updated the question sheet we had made with the answers he gave her. He told her that I was in recovery and they would call her in to see me in about 45 min. He said the surgery went well and that he also used Mitomycin C. In about 1 ½ hrs they called my wife and told her she could go sit with me in the outpatient area. I was still very groggy. At noon I was still very groggy. I felt nauseous and later threw up a little. I was drinking water, cranberry juice and apple juice. The nurse wanted me to start moving and getting up so she could discharge me by 2:15PM. I started to sit up, felt sick again and threw up probably everything I had drank. The nurse then said she would get me something from the anesthesiologist for my stomach nausea. She did…”Regin”..or something like that was administered by (IV). This made me very sleepy so I slept for a couple of hours.
These are the questions and answers we asked and got after the surgery while we are still in the hospital.
How did surgery go? Were you able to remove all of the tumor? Went well. Yes got all the tumor.
Were there any other tumors? Another small spot and got that too.
What is the prognosis? Know better after pathology.
Is there any evidence it spread? NO
When will we know more from the Pathology? Earliest Tues.
Can you tell stage or grade at this point? No but thinks it is low.
Was chemo used- what was it? Yes. Sometimes they do this again in about 1 month.
What are the statistics about re-occurrence? 50% in 2 years, what about in 3 years – up or down. Goes down and so does testing intervals.
Any other suggested therapy? Radiation, drugs, etc. Perhaps
Drugs:
Pain meds One for pain, one for bladder spasms.
Should he continue current antibiotic? Yes finish both.
What should we expect? Bleeding, catheters, pain?
Are there any symptoms of problems to look for?
When can he resume normal activities…tennis, lifting, sex? 2-3 weeks
Any diet, food or exercise restrictions?
Is there anything we should start to eat…like cranberry juice? Works for some, not for others.
About 5PM my wife and I started to leave and this time with success. The catheter was to be left over the week end until Mon. when we go to the Dr.’s office for removal. I was told I was to continued antibiotic meds as well as two new ones for Pain- Bladder Spasm (oxybutynin-5mg. generic for Dithopan) and Pain- Oxycodonew/apap Generic for Percocet). At home I took the antibiotic but threw up 45min. later. I was later successful keeping down some saltines and a little ginger ale. The pain meds seem to work well and kept me keep pain free but hallucinating and/or dreaming. I was drinking more now and passing a lot or urine through catheter. We (my wife and I) were able to change the leg bag to the bigger “stay in bed bag”.
Over the week end I gradually improved with the help of the pain pills which helped me sleep although sleeping with the catheter was somewhat painful as I tend to move in my sleep and was having weird dreams. I had a small amount of blood in my urine and hadn’t had a bowel movement in days as somehow I couldn’t (psychologically? Physically?) with a catheter (when I sat) pointing upward! Oh well...
On Monday I called Dr.’s office at 9am and they said to just come in to have catheter removed. Once there the nurse took out catheter and injected Genemycin (antibiotic). I was told to come back at 2:45 for an ultrasound of my bladder. I was really afraid to pee (after the catheter was first out) but it was not bad. There was a little burning but very little blood (and then only for the first seconds). Subsequently, no blood was noticeable.
I was asked to come back at 2:45 to the Urology office. I gave nurse a urine sample and peed. Next I had an ultrasound. Nurse said NO- zero- urine left in bladder and that was good. I made an appointment with Dr. for 1:30 PM on Wed. to go over surgical and pathology reports. So far so good!!!! But I was still very worried about stage, grade, other surgical findings and the prognosis.
Wednesday finally arrived- My appointment with Dr. to find out results of pathology was at 1; 30 PM. My wife and I arrived at 1:25 full of fear and hope and was told Dr. Spires was there. We sat in the waiting room and the minutes passed like hours. At 1:40 another patient arrived and we heard the receptionist tell her that the Dr. had a family emergency and had to leave…and that they could reschedule for Fri. We looked at each other and hoped he was still there and could see us. However, at 1:50, the nurse (receptionist) came out and called us into the hall, where we were told the Dr. could not see us….he actually had been doing rounds at the hospital when called for a family emergency. Unbelievable. I didn’t know how we could take this stress. At this point we felt, even if we hear the best news, this has taken a year off our life. Yes, perhaps over –reaction...but our lives had been damn near perfect until then.
A few hours later the Dr. called on our home phone. He explained that the tumor was Stage 1, grade 3. We were hoping for better news. Like grade 1 or even 2. Stage 0 is the best. I guess we should be VERY THANKFUL it was stage one instead of two. He said he could do another surgery (resection) in 4-6 weeks. He wanted me to get a CAT Scan too. He said for the next surgery will go in and re-scrape area. Also will do BCG (injected into the bladder thru a catheter, in the office weekly for 6 weeks. which puts bacteria into the bladder to make it strengthen the immune system. Since we were leaving for NY, we set up appointment for May 2 at 11AM. We are pretty down since at that time since the Dr, said T1 Grade 3 might mean bladder removal and we should think about it. The weekend sucked.
We made an appointment at Memorial Sloan Kettering and got to see Dr. H a few weeks later. I had spoken to Denise in the Urology physician referral office about setting up this appointment. She was so knowledgeable. We made the appointment for 10:30 on Mon for registration, then consultation at 11AM. We had to fax her pathology report confirming I was T1 G3 before she could confirm appointment. We were told I would have a cysto for the Dr. to take a look. I was also told that if we can get a barium CAT scan before we come, that would be good—I did. We also had the pathology slides from the surgery sent to MSK hospital. The slides were reviewed in NYC and they agreed with the Florida report. The NY pathologist noted there were a lot of muscle samples --none of them showing invasion. This was good news. I was told the pathologist that works at Sloan is world renowned….along with Dr. H. This is positive news.