First post/My story

9 years 7 months ago #46803 by emc007
First post/My story was created by emc007
Hi,

Let me apologize in advance if this is too long, or rambles too much. This is my first opportunity to tell my story to people that will understand what I have been going through for the last nine months.

I was a healthy 58 year old male, until 9 months ago, with a mind that feels like it should be in an 18 year old body. I don't take any medications on a daily basis.

In July of 2013, I noticed a small amount of blood in my urine, on a Saturday. By Monday, it had cleared up but I went to see my Dr. that day, just to be sure. Nothing was found but she told me that if it happened again to make sure I brought in a sample. Everything was fine until the middle of October 2013, when I had substantially more blood, after helping a friend tear the roof off of his house in 90+ degree heat for two days. I went back to my Dr., with a Ziploc bag that had my bloody urine. Again, nothing was found, but she sent my out for an ultrasound. The ultrasound found two 1cm "stones" in my bladder. I still felt fine, but my Dr. was concerned by the lack of pain.

My wife was miraculously able to get me an appointment with the head of the stone dept. at UCLA, in two weeks. This was wonderful news, because we were going out of the country for two weeks at the end of October. The urologist told us at the appointment not to worry, that he would be able to get the stones out the day of our appointment. What a relief that was. On the day of our appointment, the urologist went over the procedure he would use to remove the "stones". He stuck a scope into my bladder, with a camera and after a few minutes, he showed my wife and I the two tumors and told us he would not be able to remove them that day. He told us to meet him in his office in 10 minutes.

In his office, he told us that he felt the tumors we cancerous and I would need a TURBT procedure. He said that because I was young, in good health and caught it early that there was a 75% chance that after the procedure everything would be fine. Nothing would change by waiting three weeks until we returned from vacation. I have to say, those were the longest two weeks I've ever experienced. I had the TURBT procedure about after we got back from vacation. Everything went well and he was able to get all of the tumors out. About one week later, we got the path results and the tumors had penetrated too deeply into the bladder wall. I would need more surgery, and was referred to a urologist/oncologist.

My wife and I met with the urologist/oncologist I was referred to and UCLA. He went over the options and gave us some time to think about it. My wife was again, miraculously, able to get us an appointment with a urologist/oncologist at USC within a week for a second opinion. I don't know where I would be without her help and support through all of this. The USC Dr. confirmed what we were told at UCLA. We decided to go with the Neobladder/Radical Prostatectomy, with nerve sparring.

After nine days in the hospital, I was released (on Christmas day 2013). My wife lovingly spent every night and day with me while I was hospitalized, but the hard part for was just about to begin. She was shown how to flush my new bladder and clean all of the openings I had with tubes coming out of me. It was very hard for her at the beginning, but within a few days, she was a pro at it.

Yesterday was my nine month anniversary of my surgery and I think I am doing pretty well, aside from the nerve sparring, which doesn't seem to have worked at all. We are exploring some treatments to help in that area.

I wear a thin shield during the day. I don't usually need it at all, but sometimes if I move too quickly of lift something too heavy, it is a good thing. I am able to eat everything I want without any issues. I am drinking between 100 and 150 oz of water and walking about 20,000 steps every day, which usually keeps things flowing pretty good. At night, I wear an external catheter which allows me to sleep through the night. I just wish my bag had a longer tube attached to it, so it didn't pull when I move in my sleep.

Anyway, thanks for reading and I hope it wasn't too long. I did make me feel better mentally writing this down.
The following user(s) said Thank You: lorrainevalentine

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