I don't even know where to start.
In April I had to take Terry to the emergency room where they did a ct scan and determined that he needed to go to another hospital so that he could be seen by a urologist the next day. He did see the urologist and they went in to do a procedure to scrape his bladder, they found a large old tumor and it was removed. At that time the urologist told me that he knew it was cancer but did not know if it had gone into the muscle of the bladder but he felt that it had. He said right then that the only treatment that he could recommend was to do nothing due to Terry's Lewy Body Dementia. once the pathology report came back he said it was in the muscle and the lymph nodes. At this point he suggested removing the bladder, prostate and kidney's and have Terry live on dialysis. This was not an option we could live with..
I then took him to the VA hospital to see his primary care doctor. From there we went to the urology department and they suggested taking the bladder and prostate and a part of the colon to attach to the kidney and then the urine would flow directly into a bag. This sounded like major surgery, which it is - ranked right up there with open heart surgery! I was told that only 50% of healthy people that have it survive, the surgery was scheduled. I talked to lots of people, both medical and non medical and no one thought that would be a good option for Terry.
Terry ended up in the hospital for more than two weeks, we made many trips to the ER and then they said he was too weak to have that surgery, taking the decision out of my hands (Thank God). They decided to do another scraping of the bladder to stop the awful clots that kept forming and stopping his catheter from working and draining his hemoglobin. He has had four blood transfusions since this all started!
The day of that surgery we showed up and they got him ready then decided that the surgery was not in the best interest of his Lewy Body since the anesthesia can be harmful to his already compromised brain. It was decided that he would have Palliative radiation to "keep him comfortable".
It was almost three weeks later that he entered the Community Living Center to receive the radiation, he was to have 13 treatments. Day two he ended up getting two units of blood thus extending his time of radiation. The radiation did stop the blood clots in the catheter after only one treatment!! He stayed in the CLC unit for two weeks which allowed me to go to NY to work the two weekends he was there.
On Friday of last week I brought him home after his radiation treatment.
He was able to go to our daughters house for a party on Saturday but fell in the bathroom which resulted in him cutting his hand and bleeding a lot.
The blood clots returned with a vengencce on Sunday and the nightmare has begun again!
More later - I have to take him back for his last radiation treatment of this go around and we see the urology team today.
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