Another Scanxiety Post

Here I go again, writing a blog post before a CT scan instead of after.  If I wrote this a few days from now I could talk about the results and what it means for my prognosis and treatment plan.  But no, instead you’ll get speculation about the results and scanxiety instead.

Why would I be anxious about a CT scan?  After all, I’ve already had six of them, and this will be number seven.  It should all be routine by now.  I’ll be drinking a ghastly mixture containing barium contrast tonight while everybody else is having a beer or some other adult beverage during the super bowl.

But let’s consider the results of those previous six CT scans.  Four have been outright bad news showing cancer that wasn’t there on the previous scan.  Only two have shown a reduction in disease, and exactly none have shown the much coveted “no evidence of disease”.

More problematic, as a result of those six CT scans, four directly led to the initiation of a new chemotherapy regimen, and a fifth led to a round of radiation.  That leaves exactly one scan where my oncologist judged the current treatment plan to be sufficient and didn’t make any changes.  To put it in more human terms, over 80% of my CT scans have turned my life upside down by changing plans.

That said, there’s reason to expect this will be the second scan that doesn’t upset the apple cart that is my life.  My blood tests are all showing improvement with one unreliable exception, and generally I’m feeling better and doing more each cycle.

It’s generally unfathomable that the cancer in my liver hasn’t shrunk, given the significant drop in my liver enzymes.  I asked the nurse practitioner about this, expecting a safe answer such as “in most cases yes, but there have been exceptions”.  However, her answer was much more definitive leaving the impression that it’s almost unheard of for the cancer to grow despite improving blood tests.

But… I still worry.  Effectively I have two active cancers: The original prostate cancer I was diagnosed with in October of 2018 and the neuroendocrine variety that was found in January 2020.  Treatments that work against one form of the cancer generally don’t affect the other cancer.  It’s quite possible the neuroendocrine cancer has found a new organ or lymph node to establish a new foothold in, or that my original prostate cancer is progressing in my bones.

Such a result means more appointments to discuss my options and adjust my treatment plan, and then of course, changing the treatment plan and figuring out what the new side effects are.  In almost all cases I can guarantee increased fatigue will be a factor.

Having a CT scan is sort of like applying to a college or going on a job interview.  There’s that time where you’re waiting for them to make a decision that will significantly affect the future course of your life.  A new job could mean moving to a new state and making new friends, or maybe you didn’t get the job and you’ll stay in your current house a while longer.  It’s not a time to make long range plans because you literally don’t know where you’ll be in a few months.

But enough about the CT scan, I’ve been living in interesting times.  The day before my current cycle began we travelled to our getaway in VT and found the furnace had stopped working.  It was incredibly lucky timing because it was some of the coldest weather of the year and the furnace had only quit the night before meaning that it didn’t get below freezing inside.  We were able to drain the plumbing and pour RV antifreeze in the traps to prevent damage.  We only briefly thought about making an emergency call to get the furnace repaired, but with my infusion the next day we didn’t have time to wait for a repairman to show up.

It was odd but it was actually an enjoyable day.  There was a crisis and instead of panicking we simply went about the process of draining the plumbing for the third year in a row.  In the two previous years, extended power outages had threatened freezing temperatures indoors so we’ve gotten quite good at winterizing the place on short notice.  It felt good to be able to rise to the occasion and be moving up and down the stairs and all around the place repeatedly.  My watch logged the most steps in a day since November.

To go off on a slight tangent, many cancer patients downsize their lives to simplify life and reduce stress.  I’ve gone the opposite way and doubled down on keeping our Vermont property as a regular part of our lives.  In a way we chose our getaway well.  It’s a modest one bedroom affair with simple plumbing.  By simple I mean 90 percent of the pipes are easily accessible in the basement, and there are no places where a pipe has a long run through a wall or ceiling and could cause significant damage if it ruptured.  It’s supplied by a well which we shut off when we’re not there so the amount of water that can come out of a damaged pipe is limited.

In other words, we don’t worry about frozen plumbing because the damage should be limited and easy to repair.  If I have any health hiring a plumber to deal with frozen pipes shouldn’t be an issue.  If I don’t have my health then nothing really matters.

On Monday it was off to the oncology office extra early to get my infusion before the latest nor’easter hit.  For those not familiar with nor’easters they are sort of like a winter hurricane.  The weather system spins off shore, picking up moisture from the ocean and dumping it as snow inland.  It’s called a nor’easter because the wind (which is usually significant) comes onshore from the northeast.  This was a modest one that gave us only about a foot of snow.

As I’ve mentioned before my current chemo includes a 46 hour take-home pump.  Tuesday I awoke to a foot of snow in the driveway, and a plan to force myself out to the garage to start the snow thrower, make a token pass or two up and down the driveway, then hand it over to my wife to clean up the rest.  As it turned out, I cleared the entire driveway, the walkways, and the paved parking spot on the side of the garage.  I was on my feet and moving for about 90 minutes total, with a several hour break in the middle for lunch.  All that with a pump dripping poison into my vein.

Wednesday was relatively boring and routine and only involved a trip back to the oncologist to have the 46 hour pump removed and my port flushed.  But I did drive myself and after the snow clearing of the previous day I was feeling quite tired.

Thursday was when my wife made an appointment to get the furnace fixed in Vermont.  I loaded myself up on drugs to manage side effects and jumped into the passenger seat while my wife drove.  My goal was to help get the wood stove started to keep us from freezing while the furnace was being repaired.  That goal somehow expanded to bringing some firewood up from the basement, restocking the basement from the outdoor wood shed, and of course shovelling the path to the wood shed.  This on a day when side effects usually hit me quite hard.

Since then I’ve been acting more like a cancer patient, sleeping 12 hours a night, taking naps during the day, and generally paying the price for my enthusiasm earlier in the week.  It was great that I was able to rise to the occasion on several occasions, but now I’m feeling the consequences of that while waiting for my scan tomorrow.  It’s not the best place to be emotionally but I certainly wasn’t worrying about my scan on Sunday, Tuesday, and Thursday.

And in all this time I still haven’t mentioned my left eye.  Shortly after restarting chemo in October, I started having flashing lights in my left eye that vaguely resembled a migraine aura.  I thought it interesting at the time but didn’t think much about it.  As time went by the flashing lights became more prominent and were followed by an odd pattern of blind spots and occasional eye pain.  This unfortunately coincided with my low point in December.

I was worried that chemo or cancer was permanently damaging my vision.  I’d have to see an eye doctor to find out for sure, but at the time I didn’t have the energy for my chemo appointments and also have an eye appointment.  I asked if one of my treatments should be delayed a week to give me a chance to get to an eye doctor, but we all agreed fighting the cancer was more important than my vision.  What good is eyesight if you’re dead?

After changing treatments as a result of a disastrous CT scan that showed my cancer was growing despite treatment, my energy started to improve and I eventually was able to get to the eye doctor.  The result?  Eye migraines, which he admitted was a horrible term.  They’re largely a result of stress, and there was no observable damage to the eye other than the ravages of being over 50 years old, which apparently includes an increase in floaters.

I still get these eye migraines whenever I first encounter bright light, such as going outdoors.  But now I know it’s just a weird thing my eye does involving lots of flashing lights, temporary blind spots, and then normal-ish vision after everything subsides a short time later.  It’s really annoying, and I’m convinced chemo is contributing to the problem, but it turns out I’m not actually going blind.  So in this case procrastinating on getting a symptom checked out mattered not one bit.

Which brings me back to today.  Despite my especially busy week and resulting high step count, I haven’t actually done any formal endurance exercise in an entire week.  Thus, I shall be forcing myself out the door shortly for a walk up and down my street before the latest snow storm starts.  Activity really helps drain any extra physical energy which otherwise would be put into being anxious about my scan.