I can’t really imagine why anyone would care but the amount of effort it takes to create a record of what is going on with my cancer treatment is so minimal I figure why not?
This here is the full story which many people have not heard at all and includes details that I conspicuously left out when telling others.
DISCLAIMER: This post, and probably many of the others that follow, will involve graphic discussions of bodily functions that are usually not discussed openly. Also other, potentially gross, medical stuff. You have been warned, proceed at your own risk, etc.
Sometime back in late November or early December I had an episode of passing unusually dark urine. I didn’t really think much about it. I was at work and I was probably a bit dehydrated because all I had been drinking was a particularly strong batch of Market Spice tea. I started pushing fluids like actual water and it went away so I thought no more about it.
A few weeks later, it happened again. I was, once again, at work and had, once again, been drinking probably excessive amounts of very strong tea. My urine was dark but not definitively bloody so, again, I started pushing fluids and thought no more about it. But this time it didn’t go away as quickly. And it turned in to blood. There was, at first, some question; “Is that blood? That kinda looks like blood.” but soon all doubt was removed.
At this point I figured I should probably go see someone about this. The difficulty being that I had already decided I really needed to quit my job and get another which, of course, meant that I was going to have to change health insurance and get a new primary care provider. I didn’t really want to start any kind of process when in a few months I was going to have to start it all over again with a different group of health care providers. Also I still had suspicion that the problem might be related to reduced fluid intake and excessive amounts of acidic tea causing bladder irritation so I stopped drinking tea, continued to push fluids, and eventually it went away again.
Then it happened again, spontaneously (no tea involved) and this time with clots.
The medical term for blood in the urine is hematuria. If it isn’t associated with pain it is (as one might guess) painless hematuria. Hematuria associated with pain, either pain with urination, or flank or abdominal pain can have a number of different causes; trauma, urinary tract or kidney infections, kidney stones, and so on. The list of things that cause painless hematuria is pretty short and the list of things that cause painless hematuria with clots is even shorter. In fact really the only thing on the list is bladder cancer.
Bladder cancer is not terribly common. The number one risk factor for developing bladder cancer is smoking and number two is exposure to certain industrial chemicals. I don’t smoke, never have smoked, and don’t routinely work around any noticeable quantity of toxic chemicals so there was still some uncertainty in my mind in spite of the lack of any other obvious explanation for my symptoms. I wasn’t feeling systemically sick; no fevers or nausea. I knew my kidneys were working because I was making an adequate amount of urine, I wasn’t having any trouble passing urine, nothing. On top of that, I still hadn’t had my new insurance benefits kick in which meant there wasn’t a whole lot I could do about it. So I continued to wait.
By April I had insurance again, had managed to get an appointment with a primary care provider and the process of getting a diagnosis was underway. In May I had cystoscopy (examination of the bladder with a fiberoptic camera) which found a tumor and in June I had a TURBT (transurethral removal of bladder tumor).
There are, broadly, two kinds of bladder cancer. “Low grade” tumors, which are extremely unlikely to come back once removed, and “high grade” which are extremely likely to return. The urologist who did my TURBT was confident he had removed the entire tumor and that if the pathology report showed that it was low grade I was going to be pretty much done. Unfortunately it turned out t be a high grade tumor so further treatment was going to be required.
It took a couple of weeks to get an appointment with a different urologist that specialized in the treatment of bladder cancer and what he recommended was a course of Bacillus Calmette-Guerin, or BCG. BCG is an immune therapy that is instilled into the bladder where it provokes an immune response against cancerous cells. Literature shows that it is about 50% effective at preventing tumors from returning. The main side effects are symptoms similar to a urinary tract infection (frequency, urgency and burning with urination) and fatigue which can be cumulative over the course of treatment.
I had my first treatment today.
The process itself is not something I would do just for fun, but it is also not the most unpleasant thing that has ever happened to me. I’ll be getting weekly treatments for two months and then be reassessed with another cystoscopy to see how frequently and for how much longer additional treatments will be needed.
I’m hoping the side effects are going to be minimal but the only way to find out is to get the treatments and see what happens. This is going to be the place where I’ll be tracking treatments, side effects and generally opining about the fundamental shittiness of the whole situation. Follow along with me, or don’t if you have something better to do with your time.