Well I'm home from Salt Lake and my biopsy at the Huntsman Center. Tuesday was a long day. I don't know anything new concerning the extent of cancer in my bladder. I never saw the doctor on Tuesday. I did speak to an intern before the surgery. I guess I had good reason to be nervous. I was in pain from the moment I woke up from the surgery. My bladder hurt. It felt like I had to pee but nothing would happen. I would get sharp pains in my bladder. And I soon realized that the doctor did catheterized me. The nurses did everything they could to help me. I was finally able to swallow some pain pills and left the hospital around 9:30 pm. I was told that I have an appointment with the doctor on May 7th. That's more then 2 weeks away. I don't understand why I can't get in sooner. I don't understand why I was in pain after this operation. And I sure as hell don't like having this catheter shoved up my penis with 5 feet of tubing and a 600 ml bag attached. And I have the added bonus of pulling it out myself on Friday morning.
History - final episode (I hope)
So we are up to March 12, 2015 and the 2nd biopsy. I met with my Logan IHC doctor on the 17th in the evening. Of course I had already had a copy of the pathology report, so I already knew the results - high grade muscle invasive tumor. What I wanted to hear is how I went from inconclusive carcinoma in situ to stage 2b bladder cancer in 6 months. The doctor was almost apologetic and said that he thinks they missed something the first trip in. I try hard not to be angry, but it is hard. I know I have to move on. So now I took control of my situation. Since that day I have been reading everything I could find on bladder cancer. And unfortunately there was not any good news when it comes to my stage 2b cancer. I knew there was no way I was going to trust my Logan IHC doctor with my condition any more. I researched hospitals that specialized in bladder cancer - Sloan Kettering and the Mayo. But the expense of that I thought would be to much. And we do have a hospital right here in Utah that specializes in cancer treatment - the Huntsman Cancer Institute. And of course IHC does have bladder cancer doctors in Salt Lake. The more I researched doctors and hospitals, the more frustrated I became. I joked that it is easier to find a qualified plumber or mechanic then it is to find the most qualified doctor. Think about that. You have a disease that will kill you and you have very limited information on what doctor is the best and most experienced with your disease. Anyway, this is how I came to the Huntsman and I had to insist on the most experienced doctor. I found this true with the Huntsman and IHC is that they will try and push any new patient on the least senior doctor so they can gain experience and they have more time. But I want the most experienced doctor.
Sorry, one last history note. My Logan IHC doctor arranged for me to a CT scan and then a PET/CT scan in March. The purpose was to see if the cancer had spread outside my bladder. There were nodes on my lung, kidney, and pelvic bone. None of these had metastasized yet. So as far as we know now, the cancer is still in the bladder and has not spread.
There is much more I have discovered about bladder cancer that I will share as I travel through this unexpected journey.
good night
