(Some of this update maybe too graphical and upsetting… but it is all in light of my medical situation – apologies)
Well I can say a lot has transpired since my last update in October of last year. Back then I was starting my Hyperbaric Oxygen Therapy treatment at UCLA. That was a brutally long process of 40 days. So that ended at the end of November and I was back home again in December. Well… then after 5 days of being home, I was at work and shocked that I went to the bathroom and while urinating, I started to urinate a stream of blood. I was a bit shocked and I called in Marcy to look. That necessitated a call to my oncologist. He got me in the office within 2 days.
Initially having “Gross Hematuria” (there is hematuria which is blood in urine you can’t see, and gross hematuria which you can see) is a concern with post cancer treatment patients because of secondary cancers due to radiation. So in lieu of a cystoscopy, which he said I should avoid due to the dysuria (pain) problems I have with my urethra, he ordered a new test called a CXBladder test. That is a urine test that looks for bladder cancer dna. The test result can back in about 7 days and it was negative for bladder cancer. Great! In addition, I had a CT Urogram that looks for any issues from the kidneys down through the ureters to the bladder. That also came back as good, with just a few cyst in my liver that has been seen before. (By the way, the CXBladder test was not approved by Blue Shield and I got a bill for $2,900.00… Since that time, I have been in a medical fight to say the test was medically necessary as my Oncologist ordered it. As of this date, it is with the state of California medical review board).
So the end result was that I must have some cystitis (inflammation) issues somewhere in the chain and my body was expelling some blood from that. The normal treatment would be to go to Hyperbaric Oxygen therapy! Well I just did that so my doc said we should just wait to see if something comes up again.
FAST FORWARD TO MAY 2020
So I am at home and it is the middle of night… I get up to go pee (I don’t always, but I felt the urge) and behold a very long stream of blood. I thought shit.. not again! Unlike before where it happened one time, this time I urinated blood for two day. Now what!
Now it was time to go see a specialist. I discussed it with my oncologist and the next step was to go get a cystoscopy. You know, the one that we were trying to avoid. I ended up going to see Dr Karim Chamie who is one of the head Urologic Oncologist at UCLA. Because of the COVID-19 issues, it was easy to get in to see him as there were a lot less patients going in. I was in within the week.
I had a consultation with him and he ordered another CT Urogram that I had that day. Again no issues were shown on that scan except they also reported some small kidney stones that may present an issue in the future. He said we have to do a cystoscopy to look at the urethra and bladder.
It was scheduled for a week later. In that time, I was urinating streams of blood for about 2 days and then off for 5 days, then 2 days again. So in a way I was looking forward to the cystoscopy. I mean, lets figure this out!
The day of the cystoscopy, Marcy and I went down to UCLA. It was so nice because of COVID-19 that the freeway was clear and instead of an hour and half drive we got there in 50 minutes. I went into the room and the tech preps me by washing all of my front pelvis down with a betadine solution (you know the orange colored stuff). Then he draped with me so just my penis was exposed. Of course I asked Marcy to video the procedure so I can review it again. (No I’m not showing you the whole video) Then the guy put a small syringe of lidocaine into the opening of my penis to numb the upper portion of my urethra. It hurt… a lot. He told me to wiggle my toes to take my mind off the pain. Within about 5 minutes Dr Chamie can in and got right in to using the cystoscope (a “small” flexible tube (Marcy even commented that the tube was a lot bigger than she thought it would be!). Well I could not tell that any lidocaine was working because as the doctor inserted the cystoscope it F’ing hurt. The tech said “wiggle your toes again”!
Most likely due to the irritation I already had in my urethra it hurt a lot! He puts the scope all the way into the bladder and he extracts some urine for testing. Then he looks around in the bladder and then back out in the urethra. As you can see with the picture below, the bladder looks good but there was a lot of blood at the “bladder neck” and upper “prostaic” urethra area. Lots of blood with blood clots.
The entire procedure is about 6 minutes. (Too long!)
After the procedure, he told me: “Good news, your bladder looks really good. No issues there. The bad news is that you have “radiation induced hemorrhagic cystitis” of the bladder neck and upper urethra and there is not much I can do about it now”. He stated that it is a degenerative issue with necrosis (death) of the cells from the radiation and that it was another progressive downward step. He told me that I can come back and see him when it gets worse. I asked “what does worse mean”? He said if I bleed for 5 days or if I get blockages when I urinate. He stated that I was kind of lucky in that if the blood clots were in the bladder I could already be getting lots of blockages, but because they are in the bladder neck and upper urethra areas that the pressure at least gets them pushed out. Probably because I take Flowmax twice a day that also helps.
So that is where I am today… every week or so I have some blood while I urinate. I am reading a lot about the issue and who the experts are if I need more procedures in the future… which will eventually happen. It sucks, but what I am going to do but be prepared. It has been a journey.
So until next time my friends…..