Day 463, Cancer Number 3?

This has been a dastardly difficult post to write, mostly because my situation has been changing drastically every couple days.  I write a draft, set it aside for later word smithing and editing, and then there is new news that invalidates half of the previous draft.  I will forwarn you, the reader, that any information contained in this post is not a medical diagnosis, but rather combination of test results and best guesses by me medical team and communicated by a rather frazzled abd sometimes silly cancer patient with no formal medical training, unless you count high school biology.  You are also advised against eating anything while reading this post.

Let’s go back to the beginning of January, I had some unexplained urinary pain but no other signs of cancer.  PSA was undetectable, other blood results were normal-ish, cystoscopy showed everything clear in the bladder, and so my medical team was more than happy to give me a clean bill of health and blame my symptoms on friable tissue seen in the prostate at the end of the cystoscopy.  Spring is only a few months away, it was time to start thinking about vacations and how I’d go about training for a marathon.

A few days later I went to the emergency room with severe, writhing on the couch abdominal pain, thinking I had appendicitis or a kidney stone.  Nope, CT scan shows those are all fine, but it did show a large growth in my bladder.  WTF?  So they called my urologist who basically said “WTF, I just looked in there and it was fine”, so they changed the description to “prostatic mass” and sent me on my way with an antibiotic prescription and instructions to see my oncologist.

Oncologist looks at the scan and basically says “WTF!”.  Suffice to say nobody on my medical team was expecting anything like this.  But at the time he was optimistic and thought that chemotherapy and radical cystectomy (removal of bladder) might be curative.  He sent me on my way with a prescription for Percocet and a plan to get a bladder biopsy.  While I’m not really thrilled at the thought of losing my bladder, how upset can I be when my oncologist is optimistic?  As a bonus, they’d probably also remove the prostate, thus getting two primary tumors out of my body for the price of one.

Fast forward a few days and it’s time for my biopsy.  I can’t even remember this specialist’s name, that’s how frazzled I’ve been.  Anyhow, he said biopsying the bladder would be risky for his flavor of biopsy, as it would poke a hole in it and allow the urine to leak out internally.  It would be much safer if he could get a sample from my lungs or my liver.  My what or my what???  So into the CT scanner I go, and he finds a spot on the liver that’s not very deep and proceeds to stick needles into my side.  I was conscious for all this by the way, but drugged.  As things move around when breathing, I had to take a consistent breath, hold it, and then stay still while he moved the needles around, then back into the scanner to see if they’re in the right place yet.

A few years ago this would have been a horror story to me, but now it’s just a semi-regular part of life.  Interestingly, most of these procedures are much easier to endure than a 10 mile run.  Also, once you’ve experienced cancer symptoms, medical torment feels like a kiddie roller coaster by comparison.

Up until this point in the story I’ve spent the vast majority of my time lying on the couch or napping in bed, owing to a combination of antibiotics, opioids, and symptoms.  The frequent severe pain is thought to be caused by a restricted ureter, causing urine to back up in my right kidney leading to pain and infection, quite similar to if I had a kidney stone.  Those who are better at reading CT scans than me assure me that this particular kidney does not look happy.

My antibiotics were finished on the day of my biopsy.  Since then my pain levels have plummeted and can largely be controlled without opioids.  This would normally be good, except that lower pain levels allowed me to relax and begin to emotionally process the events of the last couple of weeks.  I’m back on medical leave from work, it’s difficult to run long without aggravating my symptoms, and they just biopsied my liver.  They wouldn’t biopsy the liver if they didn’t see something on the scan worth biopsying.  “Fuck, I’m going to die”.  I have been slapped in the face with the cold fish of mortality again.  And I can’t even share a dark, depressing moment without turning it into a Python reference.

A lot of this darkness was driven by the thought that the most likely outcome of the biopsy would be bladder cancer metastasized to the liver.  That would be bad.  My life would be in Jeopardy:

    “I’ll take deadly cancers for $500 Alex”
    “This cancer’s death rate is comparable to advanced pancreatic cancer”
    “What is advanced bladder cancer?”
    “Correct!”

Late yesterday I got a call from the oncologist with the initial biopsy results.  “Undifferentiated cancer”.  They’re still running tests, but have confirmed it is cancer.  Strangely, it doesn’t appear to have originated from my bladder, prostate, or liver.  This could be a new, third cancer, or it could be cancer that’s mutated so badly as to no longer be able to determine where it originated from.  This is where my lack of medical knowledge causing things to get lost in translation.  I’ll also add “Martian cellular invasion” and “Zombie apocolypse” to the potential final results of the biopsy to demonstrate the full depth of my knowledge in this area.

Somehow, I’m actually upbeat about this latest news for many reasons.  It’s still possible they will identify this as a specific cancer that could be more treatable than advanced bladder cancer.  If it didn’t originate in my prostate or bladder, then all those checks for recurrence of those cancers weren’t in vain, they just weren’t looking for new cancers.  A third cancer could make me a bit cocky.  “You’ve seen what happened to those other two cancers that messed with me, haven’t you?  I’ll give you a week to leave my body quietly before kicking your ass.”

Most importantly it’s a reminder that you just never know what’s going to happen when you wake up each day.  Normally, this is a real drag because how do you plan anything in life when you can’t reasonably expect to be healthy on any specific day?  More specifically, how do I train for a marathon when runs over a couple miles chafe my bladder tumor?  It’s enough to make me want to cry.  Und I did.

So here I am again, 463 days, about 15 months after my life was ripped to shreds by my original cancer diagnosis, waiting for the specifics of my next diagnosis and standing in the rubble of the new normal life I had pieced back together.  Depressing, isn’t it?  Well, I’m hoping I hit bottom a couple days ago.

As I’m increasingly able to control my pain without opioids, I can get hours to do things during the day.  It’s a gorgeous January morning, so I’ll probably head out to the garage later and give the snow thrower an oil change.  Generally I hope to get a few things accomplished and have a few laughs along the way.  At this point it’s reasonable to expect I’ll wake up tomorrow, and the day after, and so on until the day they figure out which chemotherapy should work best for me.  With luck that will beat the disease back into remission giving me many more days to wake up and figure out what to do and what silly thing to post to the internet.

While I still have my dark moments, I’m focusing on taking one step at a time and putting the pieces of my life back together as I can.  In closing, let me stress how vital a sense of humor is in a time like this.  How do you seize the day and savor every moment when you’re writhing on the couch in agony?  Well, within a few hours of that awful moment, I pulled up some Monty Python on Netflix, and happened to re-watch the fish slapping dance.  I can’t resist giggling at this short sketch.  What in life could possibly be so bad that I wouldn’t laugh at it?

Let me leave you with this thought:  When things get really bad and I can’t take it anymore, I’m going to load up on painkillers, grab a fish, travel to the local mall, and start slapping random people with the fish.  When the police arrive I’ll drop the fish, pull out a banana, hold it over my head, and charge them with a fierce scream.  Now matter how that ends I’m sure it will be a once in a lifetime experience.





I’m relatively certain such an act will make the news, so if you watch the news and this isn’t the lead story, you can rest easy in the knowledge that I’m coping with things okay.

14.5 Months and Friable Tissue

The decade of the 2020’s is off to a roaring start!  Let’s recap the latter part of 2019 to set up the events so far in 2020: Way back in September I started having some odd sensations when relieving myself.  This was mentioned to both my oncologist and urologist at routinely scheduled appointments.  All signs pointed to my prostate cancer being under control, and my bladder cancer being entirely eradicated, so everybody including me was happy to ignore that symptom at the time.

These routine appointments are a bit like Groundhog Day.  If the doctor doesn’t see my shadow, then the cancer is considered in remission and it’s three more months of dancing happily in the sun for me, and then the whole process repeats.  I repeatedly wake up to “I got you babe” playing on the clock radio, go get a blood test, and wait anxiously for the results.  Every.  Three.  Months.  At least that’s how it’s supposed to work.

It’s perfectly normal to have some anxiety about these appointments.  If signs of cancer are found it can mean more tests, changes in treatment, surgery, radiation, who knows.  The new normal life I’ve been building gets thrown out the window.  It’s quite a bit like applying to college every three months.  There’s the nervous anticipation of not knowing, and thinking about how drastically the future direction of your life depends on the answer.

So when I went to the mens room on my way to my oncology appointment, and saw pink lemonade going into the urinal, my heart sank.  Blood in urine, or hematuria, really gets doctors’ attention.  They like to run more tests.  This was actually the exclamation point on the gradual change in my symptoms from “strange sensation”, to “discomfort”, to “painful urination”.

Here are some interesting stats:  Blood in the urine usually has a non-cancerous explanation.  But if you do have bladder cancer, there’s an 85% chance you will see blood in your urine at some point, and a 99% chance you’ll test positive for blood in urinalysis.  It’s very treatable if caught early, so it should be high on the list of things to check when there is blood in urine.

When I mentioned this latest development, my oncologist literally tossed me a container for a urine specimen and said “Merry Christmas” while it was in the air.  It came back positive for blood and negative for anything else of interest.

My blood test results were fantastic.  PSA < 0.01 (no detectable prostate cancer activity), alkaline phosphotase at 43 (no meaningful bone activity), no anemia, etc., etc.  If my prostate cancer is doing anything it’s going about it quite discretely.  My blood looks absolutely marvelous, except when it’s in my urine.  So off to the urologist for what really is a urology problem.

The standard procedure at the urology office is to pay your copay and give a urine sample. Apparently anxiety makes my symptom worse, because this was a super painful urination.  It’s the kind of pain that makes you want to jump around screaming then curl up into a fetal position.  It’s hard to stand upright when the pain hits.  And here I am with a half full specimen container in one hand, and using my other hand to aim the rest of my bladder contents into the toilet bowl and trying not to water the walls and the floor and spill my sample as my body wants to convulse.  Too much information I know, but it’s one of those moments where having cancer feels like a screwball comedy movie.

Back to my appointment.  I like my urologist.  When something is worrisome to him, he is extremely proactive.  He moved up my CT scan and biopsy after seeing my PSA test.  My bladder surgery was about two days after after my bladder cancer diagnosis.  When he sees a problem he takes action immediately.

The only thing I don’t like about him is his tendency to want to stick things into that most personal of male body parts.  So of course, when I say “it hurts when urine comes out”, his response is “can I stick a scope in there?”  And wow did this cystoscopy hurt!  The nurse was telling me to relax and breathe and I muttered something about childbirth in reverse.

Good news!  My bladder is still marvelously clear of any growths, but while removing the scope the doctor found the source of the blood.  I have friable tissue in my prostate, but it can be removed by fulguration if it doesn’t resolve on its own.  Huh, what?  I have fry-able tissue that you can, um, fry?

The wonderful thing about the internet is that after my appointment I was able to see his notes from my appointment and use the internet to look up terms.  “Friable” actually means “tissue that readily tears, fragments, or bleeds when gently palpated or manipulated”.  If I understood the urologist correctly, it’s quite common after radiation, except I didn’t have radiation to the prostate.  When I asked if it could also happen due to chemotherapy and hormone therapy, he didn’t immediately dismiss the idea, as he’s done with other ideas I’ve had.

So my cancerous prostate has tissue that easily tears and bleeds, which is in a way is a huge “no duh!”  The optimist in me sees this as being a logical result of cancerous tissue shrinking and dying off.  My proactive urologist told me to come back in four months, but to call him if it gets worse in the meantime.  I’m not having any trouble with urinary retention, and with that undetectable PSA it’s highly unlikely this is the result of active cancer.  In summary, no need to worry at this time.  Now I can truly celebrate my undetectable PSA!

There’s a small chance this problem is a side effect of Xgeva, and after months of lobbying my oncologist he finally agreed to reduce the injections from every four weeks to every eight weeks.  So maybe by the time February rolls around this will all start going away on its own.

If it doesn’t go away I can have surgery to remove the offending tissue and have it sent for biopsy.  I have mixed feelings about this, as I’d like to avoid anesthesia and if this friable tissue is just the tip of an iceberg then how could it be a permanent solution.  But it is an option.

Then it was back to the office to finish my workday.  How do I respond to smalltalk when people ask “Hey Tom, how’s things?”  “Oh, I’m pissing blood today, how are you?”  “I just had a cystoscopy during lunch, and you?”

It’s more than just small talk.  Prior to my appointment, when we were discussing plans and schedule, how much do I say?  That appointment could have led to all sorts of other appointments, tests, or even surgery (which is still a future possibility).  This time, I said something like “I have an unexpected medical appointment, and there may be more after that one”.  It’s factually accurate and doesn’t go into any details.  My read of my coworkers is that they are truly interested in my cancer journey, but perhaps not so much about some of the more personal details I love putting into this blog.

So that’s just the first 10 days of the new decade.  Let’s hope the rest of January is a bit more boring!