Rapt attention

Friday, June 16, 2023

Too much information

This week has taken a lot of logistical planning. At the risk of fetishizing my medical condition and travails and in case you are remotely interested, I think I will give you a peek into my world, for better or for worse. 

First, the back story: So as I have mentioned countless times before, ad nauseam, I have fought cancer in one form or another for thirty eight years. Four years ago, it returned in a bad way. I went to three doctors, including the leading Keck USC and they all wanted me to have my bladder and prostate removed and replaced with a neobladder that would be fashioned out of my intestine. I had previously lost a kidney and did not want to go there again.

I found a wonderful doctor in Hillcrest who agreed to put me back on BCG, an inoculated tuberculin vaccine that works as an immune stimulant. I had been part of the research study at UCSD for this treatment in the mid 1980's and it worked.

Blog followers know that I was stage 4 cancer in the bladder wall two or three years ago and things weren't looking too good. After my prodding, we started back on the BCG and while I still have cancer it is low level now. My doctor wants to keep it that way and suggested a prophylactic round of BCG again. It requires five consecutive weeks of treatment. I agreed.

There are a couple problems with this, mainly I have to make a living and have a show in Santa Fe next weekend and one in Santa Barbara the following month. So she is letting me split it up a bit. This morning was to be my first treatment.

Can we talk about my condition? I have what is referred to as an old man's bladder at this point, it is seamed and has little caves in the side called diverticuli and really isn't working very well. My late urologist John Greisman said I had an angry bladder after operating on it for the umpteenth time and removing hundreds of tumors. It has not been my shining feature.

And one of the problems I have is that I develop infections very easily due to its miserable state, after about half the time anybody administers a scope or a treatment. So I am wary as the pain can be excruciating and prostatitis is close to the worst pain I have ever felt. Anyway post treatment complications usually knock me out of the box for about two to three days. My response can vary from a trifle to nausea and terrible pain for several days. When it gets really bad I typically will take 5 to 8 hot baths a day to relieve the anguish.

So I finished 90% of my show packing yesterday, just in case. Honestly, I have taken so many antibiotics for these UTI's that I don't know how long they will still work on me. Two months ago I had a biopsy that required a double dose of two different antibiotics.

Let's talk about the procedure, shall we? A nurse typically comes in and puts a clamp on my penis, cleans it and she them administers a numbing agent that takes a few minutes to work. A tube is inserted through my penis into my bladder, never comfortable.

The BCG is administered through the tube and I am instructed to lay on back, front and both sides for fifteen minutes a piece before I go merrily on my way, in order for the vaccine agent to thoroughly coat the bladder.

Now there is one major problem with living an hour away from your doctor and taking BCG. BCG can not be released into a public toilet, it is very powerful and can kill the baby of a pregnant woman. What if the person who cleans the toilets is pregnant? I used to carry bleach with me to appointments and I would clean public restrooms after using them because I don't want to hurt anybody.

I am so very freaked out by this possibility. Once I mutually planned a stop with a friend on the coast to use his bathroom post surgery and he changed his mind after the procedure and told me I could not stop. Time got short and there was nothing to do but piss myself in the car. I have never spoken to him since. It was a definite low point in my life but I couldn't take the risk. Don't need friends like that.

Today, I timed it differently. I melted some metal at the refiner down on Convoy and had an early breakfast at the Original Pancake House. 

I was still early and drove through Balboa Park afterwards, which is part of my normal routine. It always chills me out. Love the park.

The nurses today took extra care with soap and betadine to try to avoid infection.

I got my dose without too much trouble and drove to Santee Lakes afterwards to try to grab some shots. No luck.

As you know, my passion in life is bird photography, especially large raptors. 

Except for my own neighborhood, things have been really slow on the bird front of late. 

Shut out, I drove to Lake Wohlford to look for eagles. 

Nothing there either but I hiked far enough on the Osprey Trail to find a spot where I could relieve myself without the possibility of hurting anybody. 

Mission accomplished! 

Saw a house wren and a pacific sloped flycatcher but nothing serious. Ended up driving home the back way from Valley Center to Pauma Valley, almost went up the East Grade of Palomar but felt like I should not push it any farther.

So I had a only slightly miserable procedure but then spent the day in the country enjoying myself and am now laying down and seeing how my body will react for the next two days. 

Wish me luck!

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