20 Month Update

I’ve now survived over 20 months, or 614 days as of today, since my original diagnosis of prostate cancer, and I feel like absolute crap.  But I’ll get to the details of how crappy I feel in a bit.  First, I wanted to share the story of Joe.  I don’t know Joe’s real name, I only know Joe’s daughter has posted about him on the prostate cancer forum I frequent.

Joe and I have followed very similar roads.  We both were diagnosed in October 2018 and responded well to treatment.  But for both of us, things started going downhill again in late 2019.  In January we both were diagnosed with neuroendocrine prostate cancer and in both cases it was interfering with the ability of urine to flow freely from the kidneys.

This is where our stories diverge.  I had a urinary stent placed, kidney function was maintained and even improved somewhat, and chemotherapy was started.  Joe wasn’t so lucky.  The doctors were unable to place a stent in him, so he ended up with a double nephrostomy.  That is, tubes were placed into the kidneys that allowed them to drain into bags external to the body, one for each kidney.

Joe’s kidney function never recovered to the point where the doctors felt it was safe to proceed with chemo, and Joe passed away in late March.  I never knew Joe, but his story has affected me greatly.  I’m sad every time a brother in the prostate cancer battle passes on.  When somebody has a story similar to mine, it hits that much harder.

Neuroendocrine prostate cancer (also referred to as small cell) is especially difficult.  It’s exceptionally rare.  Advanced prostate cancer is a rare subset of all prostate cancers, and neuroendocrince is a rare subset of advanced cancers.  To make matters worse, it’s the most deadly form of prostate cancer, so those few patients that have it generally don’t stick around long.  In an online forum with thousands of members, it seems I can count the number of living cases of neuroendocrine prostate cancer without running out of fingers.

Boo hoo (said sarcastically).  I’ve found another way to look at Joe’s story, and that is to realize that I’m still here.  I’m sitting in my home office, looking out the window at the sun through the trees and hearing the birds singing.  Joe is not here to enjoy this peaceful moment, but I am.  It’s the realization that this disease could have easily killed me already, but it hasn’t, and I should be mindful of that.  I could have been Joe, but I wasn’t, and so what am I going to do with this day that I might not have had?

Hold that thought and let’s get back to that “I feel like crap” opening paragraph.  Each cycle of chemo has brought with it increasingly severe side effects.  At my absolute worst, I had constipated diarrhea.  This is a condition brought on when some drugs cause diarrhea, while others cause constipation.  In planer terms, I had a bit of constipation that was acting like a cork holding back the impending diarrhea.

It led to one heck of a Friday night.  Before the pandemic, many people thought of Friday night as date night, or a chance to meet up with friends for dinner.  Generally it’s the end of a work week and a good reason for merry making.  I spent this particular Friday night laying naked on the floor of my bathroom in a pool of my own sweat, wondering if I was going to vomit, have diarrhea, pass out, or some combination of the above.

I thought about calling 9-1-1, but decided against it. I didn't want the EMTs to see me like this. I should shower and put on some clothes and be more presentable when they arrive. If I do pass out, my wife can make the call and I'll be blissfully unconscious for the whole ordeal.

But I didn't pass out. My wife brought me some cold compresses for the back of my neck that greatly eased my suffering. Turns out she's an expert in dealing with intestinal duress, though that subject never came up while we were dating. When I was in my 20s, it was difficult to fathom what might become important to me in my 50s.

Eventually I climbed back up onto the toilet and gave it another go.  Grunt, plop, plop, KAPLOOSH!  I'm happy I didn't hit my head on the ceiling or crack the porcelain.  The cork had been popped and the champagne was flowing, much to my great relief.

And the point of this story, besides grossing out my readers, is that not every moment of life is a gift.  Some moments are just cursed and no amount of stopping to listen to the birds singing will make impending diarrhea any better.  Let it be known that people like Joe don’t have to deal with such moments anymore.

In my last cycle of chemo, I was much more proactive about laxative use, and never let my bowels get into such an untenable situation.  Still, this last cycle brought the most fatigue, left me the weakest I’ve felt, and gave me the most aches and pains.  When I had chemo in 2019, things got pretty rough at the end, but I’d still have the odd good day here and there.  In 2020, I’ve been lucky to have a good hour here and there.  Most of the time, that hour was spent walking in the woods and then crowing about it on Facebook, to keep up my image as the happy, active cancer patient.  But it’s been extremely rough at times.

As rough as things were getting, I do have a masochistic side, and was wondering if there was something else I could to to make this last treatment extra special.  My urologist had the answer: Let’s replace my urinary stent.  Stents can’t be left in indefinitely, as they develop “encrustations”, which basically means calcium and other minerals build up on the stent and turn them into a big long kidney stone.  They can also become fragile and break with time.  They should be changed every three months, but mine had been in for 4.5 months due to the pandemic and chemo.

Changing a stent isn’t quite surgery, but it does require going into the hospital and having general anesthesia.  While there are no incisions, pulling an encrusted stent out through your genitals and having a fresh one inserted via the same route does cause some physical trauma.  The hangover from the anesthesia, along with the trauma to my urinary tract, is what really made this last cycle of chemo extra special.  On the bright side, that procedure is now out of the way and maybe I can proceed on maintenance therapy and begin to recover from the medical beat-down I’ve received since January.  Maybe?  We’ll talk about my impending scan in a moment.

One last observation about the stent:  I asked, and practically begged the urologist not to insert a new stent unless it was absolutely necessary.  Apparently there’s a test they can perform to verify that urine can flow from the kidney to the bladder, and the plan was that they would perform this test prior to inserting a new stent.  This plan was confirmed on the morning of the procedure, but the urologist did mention he was very partial to inserting a new stent.

Afterwards, he admitted he didn’t even perform the test, he just put in a new stent.  As far as he’s concerned, I still have active cancer and he wants me to have full kidney function for whatever treatment may come next.  I really want to complain about how the stent greatly hampers my ability to run.  On the other hand, my doctors don’t want me to become another Joe.  They tell me not to lose hope, but then are very conservative in their decision making, almost like I have a deadly, high risk cancer or something.

The new stent has been extremely uncomfortable, but it’s too early to tell what’s truly due to the stent, versus the transient trauma of changing stents.  And of course, chemo is going to enhance any fatigue and pain that might be associated with a stent change.

The stent is probably going to complicate my running, not that I’ve had the energy to go more than a mile at anything faster than a walk for a few weeks now.  How the mighty have fallen, if you’ll allow me to call my mediocre pre-cancer running performances “mighty”.

Later this week I’ll be having a CT scan to assess the results of chemo.  I am very anxious, and there is a reason why the term “scanxiety” is popular with cancer patients.  The results of this scan will feed directly into decisions about what to do next in my treatment, specifically the possible use of radiation against the primary tumor in my prostate.

There’s a very good reason to be anxious.  Radiation could extend a remission and overall survival, but brings with it potentially significant short and long term side effects.  My life could be extended at the cost of incontinence or a burned rectum.  How much extra survival are we talking about?  Weeks?  Months?  Decades?  I can guaranteed it won’t be decades, and very likely not years.  Is urinary incontinence worth an extra month or two of life?  These are the questions I’ll be trying to answer with my doctors, and reaching a wise answer requires that I think about what I want out of life and my cancer treatments.

And the answer I keep coming back to is “I want to run another marathon”.  Of course, there’s much more to life than running, but it’s easy to put an objective number on.  Also, my weekly mileage has correlated very well with how well I’m doing in all aspects of my life.  In 2019, I had a number of weeks over 30 miles, and those were the weeks when I was working full time, had a social life, and spent quality time in the woods of Vermont.

In the last two weeks, my mileage totals have been about 6 and 5 miles at a very leisurely walking pace.  I’m on disability leave from work, and my social life is an occasional Facebook post.  I had a good hour yesterday and went to the CVS drive through to pick up some prescriptions.  Weekly mileage totals in the single digits generally don’t correlate with livin’ la vida loca.

“Run a marathon” is becoming my mantra for balancing quality of life with length of life.  I can’t run a marathon if I die before I complete the training.  On the other hand, do I want to give up running and other things I enjoy and can still do for a marginally longer life?  I don’t fear death so much as I fear being alive and not living.

And that’s what has made chemotherapy so difficult.  I feel like a ghost haunting my house.  My Mustang sits abandoned in the garage.  I can see it, but I’m not well enough to take it for a drive or give it a long overdue oil change.  In a couple weeks I could easily be back to doing those things, or I could have radiation and remain a ghost indefinitely.

Meanwhile Joe isn’t the least bit worried about scans or oil changes, and I sometimes find myself asking if I’d rather switch places with Joe.  The answer is a pretty quick “no”.  I generally don’t wish for death, I only wish to stop being so anxious about what the future holds.

Have a Great Day

It's been a very rough 5th chemo cycle, for reasons that will be saved for another blog post.  Suffice to say I needed a moral victory, and decided that May 19th, 2020 should be a special day.  An intentional effort would be made to have a great day.  A day that would show that despite chemo and Covid-19, life could be enjoyed and old dreams re-ignited.

Why May 19th?  Several reasons: It marks 31 years since I graduated from RPI, and it also marks 19 months since my original diagnosis. The weather was also about as perfect as you can get for spring in New England.  Upper 50s, bright sunshine, and enough of a breeze to keep the bug away.

Let's back up a bit, and recall that around the beginning of the year I set a goal of running my second marathon.  I ran my first marathon back in 2011 and have tried unsuccessfully to run a second marathon ever since.  I've more or less met every running goal I've set that doesn't involve a marathon, so I'm a bit stupefied.

My initial 2020 campaign was quickly derailed my third cancer diagnosis and a global pandemic.  A saner person might take this as a sign from the gods that this isn't meant to be.  But I'm too stubborn to give up.  Besides, defying the will of the gods just makes for better story telling.

Now, how do I word this next bit correctly so it doesn't sound like "I'm going to die!"?  I'm not inclined to hunker down and wait for the pandemic to go away, because if you look at some of the predictions for how long it might stick around, and you look at the survival statistics for neuroendocrine cancer, there's a reasonable chance I might not be around to see what the world is like after the pandemic.

On the other hand, given my initial response to treatment, there's also a reasonable chance I'll enter a period of relative health later this year without any guarantees of how long it might last.  Could be only a few months, could be several years or even (unlikely but possible, and what we're hoping for) decades.  But how do I run a marathon when there are no organized marathons to run?

Runners can be a nutty bunch, and many have been running marathons in their own ridiculously small back yards.  As much as I've talked about our Vermont property, we do also own a small bit of woods at our primary residence in Massachusetts.  We also have developed a trail in those woods over the years.  Can you say "backyard trail marathon"?

I decided that May 19th, 2020 would be the day I'd re-launch my campaign to run marathon number two, but my target "race" is now an informal one literally right around my house.  It has the benefit of being something I can do whenever my health permits, and without worry about what Covid-19 might be doing weeks, months, or even years from now.

The other part of this plan is to extend the existing trail a bit so a marathon is approximately 100 laps.  That might require some gratuitous zig-zagging to achieve, but so be it.  It will be a course with twists and turns and little itty bitty hills.

And so on the morning of May 19th I started the day with a rake and a pair of lopping shears and cleared maybe 50 feet of new trail in front of the house.  It wasn't too difficult.  It involved lopping low hanging branches off of the trees so they don't poke me in the eyes, and raking the bulk of the leaves off the intended trail.  The raking serves two purposes: It exposes any tripping hazards such as small stumps or rocks, and it seems to greatly reduce the chances of picking up ticks (on an ironic note, I picked a tick off my neck while writing this post).  Here's a photo of the freshly cleared section of trail:

As an aside, using the lopping shears took all my strength in my current condition.  I'm hoping that's a transient effect of the chemo, and not a sign of significant muscle loss, but either way it's good that I'm staying active because my experience has been that health is a "use it or lose it" proposition in my situation.  It's time to start using the upper body a bit more.

Let's take a tour of the trail, starting with going around the side of the house and onto the main trail that my wife has been maintaining for years.  We've (meaning mostly she) have slowly built what we call a "hedgerow" by taking small-ish dead trees and branches and stacking them near the property line.  It's technically not a hedgerow because it's dead plant matter, but it is a sort of makeshift fence.  It also helped to keep our dog on our property during morning walks, though if she really wanted to she could easily hop over it.

This hedgerow has turned into a major highway for chipmunks and squirrels, and they make quite the bustle in it (did you catch the subtle song reference?).  This prevalence of rodents brings red tailed hawks and barred owls to the property.  One morning we saw what must have been a particularly satiated owl sitting on a tree branch for quite some time, content to watch the chipmunks running around without making any attempt to catch one.

Further on, near our back border, the trail takes a turn and runs past a small stream.  It's spring so the stream still has water in it, but it usually dries up by summer:

At the other corner (it's hard to see the stream in this photo unfortunately, but it's there) is a bench that used to belong to my grandmother.  She died before I was born, but my mom remembers her sitting on this bench.  When I was a kid, the wood had rotted away and all that was left was the metal bits.  My dad rebuilt the bench with new wood and it was at my parent's house for years.  Now it's in my back yard and I don't spend nearly enough time sitting on it.  It's starting to rot out again, so another one of my goals is to have a go at fixing it back up.

So that's the brief tour of the property.  Now it's time to get started on that marathon training:

Impressive, huh?  That's a flat out sprint for me, and about as much actual running as I can do before I'm out of breath.  My aerobic limits are very low, and it doesn't feel very good to test them right now.  It's the chemo.  It happened last year and I recovered afterwards, and it's reasonable to expect that will happen again.  But for now, "run" most means "brisk walk at best"

And the results of my morning's efforts:

There was a price to pay for this exuberance, both in the afternoon and the following day, but it was worth it.  I'm at the point in my treatment where I might be able to start increasing my pace and distance.  Maybe.

I still have one more chemo cycle to go, will need a minor procedure to remove or replace my urinary stent (let's hope for removal!), and may have radiation after chemo is complete.  After all that is done, hopefully my treatment will enter a maintenance phase consisting of four drugs.  I have an extra week to recover before that last chemo, so it's possible I'm at my low point right now.

My plan right now is that either I won't need radiation, or it won't be as bad as chemo, and it's time to start ramping up my activity.  How far I'll actually get nobody knows, but let's shoot for a marathon, give it a try and see what happens.  Maybe I'll be running Boston at age 70 in 2038.  There's no guarantees it won't happen, I'm just not planning my life around it right now.

Before ending on a silly note, allow me to get philosophical for several paragraphs.  I feel extraordinarily lucky to be able to go out my door and "run" through the woods while others are struggling to pay rent during the pandemic.  I can trace this luck back to my graduation 31 years ago.

In 1989 Raytheon hired about 200 software engineers, including me.  In 1990 they hired less than 100.  In 1991 it was 0.  That first job was the start of a career that has allowed me to own this little patch of woods.  If through sheer luck I had been born a couple years later and graduated in 1991, my life might have turned out very differently.

Life is unfair, but that unfairness goes both ways.  When looking at my life, you can say I've been both blessed and cursed.  I'm not going to say we should only focus on our blessings, but certainly I'm trying to remind myself not to focus only on the curses.

Time for some levity.  When we bought our house, the borders of the lot weren't marked.  We knew there was an abandoned car back there, but only after our property was surveyed did we realized the house also came with Toyota Corona station wagon.  It's literally on the other side of the stream shown in those earlier pictures.

Do you remember those "Oh What a Feeling" commercials from the early 80s?  I do, and one of them featured a Corolla that looks surprisingly like our junker Corona.  Here I am recreating that commercial scene almost 40 years later (hint: click on the picture to see a larger version).

Here's the full comercial:



And here's an interesting story about the origins of the ad campaign.
https://vengrove.tumblr.com/post/4024546321/history-of-the-toyota-jump-the-power-of/amp

Well that about wraps things up for this post.  I had a great day, but it took about a week of preparation and recovery to do so.  Have a great day everybody!

A Day in the Life

It's been too long since I've posted something.  It's not that I haven't written anything, it's that I haven't written anything I like.  Today's post is simply about what happened to me today, and not an over-ambitious attempt at making the next literary masterpiece.  It does help that today was interesting and involved cars.

Anyhow, today was the first good-ish day I've had since completing the infusions for my current cycle of chemo last week.  If you follow me on Facebook, you've seen all the whining about every little bit of malaise I've been feeling, when in fact I'm handling chemo rather well by chemotherapy standards.  Basically that means I haven't been to the ER or been on the phone with my doctor unexpectedly.

Today I had one goal: Go to the pharmacy and get some drugs.  So out into the garage, hop into the Prius and... nothing.  Deader than a door nail.  Looks like the 12 volt battery went dead.  Without that, it can't boot the car and turn on the high voltage battery to start the engine.

Now here is where I go off on a long tangent about modern cars, except that if this is an automotive themed post it really isn't a tangent, is it?  The 12 volt battery in the Prius is located under the hatchback.  This isn't a bad idea in itself, except the hatch release is electrically operated.  You can't get direct access to the battery unless the battery is working.  Brilliant!

There is a connection to jump start the car under the hood.  But the car is parked nose-first in the garage, and with a dead battery it's impossible to take it out of park and roll it out into the driveway.  Brilliant!  Where's my battery charger?  (which basically means three laps of the house looking for it)

Hook up the battery charger and... nothing.  Hmm, why isn't this working?  Where's my multi-meter? (another three laps of the house) Oh rats, the batteries leaked and that's not working.  It's bad enough cancer treatments have removed all testosterone from my body.  My masculinity is hanging by a thread, and I really need to be able to competently deal with a dead battery or it will be the last straw leading to my man card being revoked.  Don't you realize how serious this situation is?  I'm supposed to be a car guy!

Where are my jumper cables? (add three more laps, my step count is going to be really good today!)  I'll take a battery out of another car if I need to.  No, wait, the cables are just long enough to reach the battery in my Mustang parked on the other side of the garage.  Literally not an extra inch of length to spare.  And we're off to the pharmacy!

Hey, why is the interior light on?  Ah, that must explain the dead battery.  Wow, accidentally leave the interior light on, and you can't get anything out from under your hatchback without a jump start.  Have I already mentioned the brilliant design decisions in modern cars?  I'm an old fashioned guy.  The Mustang has a simple old fashioned switch in the door.  If the door is open the interior light is on.  Close the door the light goes off immediately.  If the battery is dead you can just put it in neutral and easily roll the car.  Better yet, if you have a hill, roll a few feet and pop the clutch.  But I digress, I was on my way to the pharmacy.

The Prius is an exceptional car for drive-throughs.  The gas engine turns off when you enter the parking lot, and stays off while you drive through the parking lot, though the drive through, and doesn't restart until it's time to accelerate back onto the main road.  Some people refer to it as "golf cart mode".  I own a Prius because I live in Massachusetts and traffic sucks.  It's sucks worse with a stick shift.  It sucks the most when it's snowing and you're stuck in traffic with a rear drive stick shift.  Fishtailing every time you drive forward a car length at the stop sign gets old pretty quick.

I've digressed again, but now I'm at the window and pay a $40 copay for about $5000 worth of drugs.  That's not an exaggeration, and that's for just one of six cancer specific drugs I'm currently on.  Cancer isn't cheap, or at least it isn't cheap for my insurance company.  Some cancer survivors go through all the same crap I've been going through and have to deal with bankruptcy as well.  But my insurance has been fantastic so far, so one less thing for me to worry about.

And back home.  I must say, the adrenaline rush of a dead battery sure pushes the side effects away for a while.  I'm feeling pretty good and it's not cold and rainy today.  I think I'll take the Mustang out for the first time in weeks and find a place to walk in the woods.  The Midstate Trail should do nicely.

The black flies were out, but with a bit of wind they weren't too bad.  I do miss my long hair.  When taken out of a ponytail, it provided excellent defense against all sorts of flying and biting insects.  But it's a cool day, I was wearing a hat for most of it.  When going uphill, I'd overheat and take the hat off.  I'm not use to the feeling of wind blowing directly on a sweaty scalp.

It was a very slow walk with a very high heart rate and lots of heavy breathing.  My lack of hair is a reminder that my lungs and digestive system are faring about as well as my follicles.  In other words, not very well at all.  But I'm enjoying the outdoors with nobody else on the trail, which was the goal of this particular exercise (pun intended).

And as usual, I found myself a mile deep in the woods and getting a bit tired and sore.  Well, calling for help is't a great option so I'll have to keep walking until I get back to to the car.  Historically, the best way for me to complete a 10 mile run is to get myself 5 miles from home without a cell phone.  It virtually guarantees the run will be completed.

A Mustang isn't the most comfortable car for a body full of bones and joints damaged by cancer and inflamed by exercise, but again, I find myself in a position where there is no great alternative.  In truth it wasn't that bad.  Sitting is a lot more comfortable for me than it was after my original diagnosis in 2018.  Most of my current pain is caused by my urinary stent, and one of the drugs I picked up today will help with that.

And now I'm wrapping up my day writing this post.  I'm pushing myself a bit, because I'd really like to crash on the couch and fall asleep in front of the TV.  It's been a great day.  More was accomplished today than in the entire preceding week, and I didn't actually do that much.  Tomorrow's goal is to take a bunch of trash, recyclables, and a couple gallons of used motor oil to the town transfer station.

Between the severe cancer diagnoses and disability applications, I frequently get asked if I'm able to complete the "activities of daily living" (ADL).  They are asking if I'm able to dress myself, bath myself, and prepare meals.  My wife handles the meal preparations, so my personal ADL list includes routine car service like oil changes, taking trash to the transfer station, and of course, occasionally getting out a chainsaw and cutting up a downed tree on the property.  I'm very happy to say that I've accomplished a full day's worth of ADLs in the month of April.

Precious, Malaria Drugs, and an Update

Photo Opportunity

There’s nothing like a worldwide pandemic to suck the joy out of living with cancer.  It’s cut me off from socializing with friends on my good days, and taken away the auto racing I was looking forward to for entertainment while laying about on the couch on my bad days.  Indoor track season has ended, so I’m left to my own devices for photo opportunities.

I repeatedly make jokes that cancer treatment is slowly turning me into Gollum.  Recently, a meme went around the internet showing Gollum calling a roll of toilet paper “precious!”.  Let’s put the authenticity of my joke to the test, shall we?

Hmm, I still have a bit too much hair in front, but from the rear I assure you I look very much like Gollum.  It’s continuing to fall out, so by the time they do another Lord of the Rings movie I truly believe I could play Gollum without any makeup or special effects.

Cancer, Coronavirus, and Treatment Hype

There’s so much I could say about Covid-19 and how it parallels the experience of having cancer, but today I’ll just stick to the hype over potential treatments.

There’s been a lot of hype in the news about the potential for malaria drugs to treat Covid-19.  The FDA recently approved the use of such drugs, despite a general lack of rigorous evidence that they do anything.  Could malaria drugs stop the virus and get us back to being a normally functioning society?  I’m not holding my breath.  Let me tell you a story.

Chemotherapy kills cancer cells, but it also kills healthy cells.  Generally, the dose of chemotherapy is limited by the bone marrow.  Too much chemo kills all the bone marrow and you can’t make blood cells anymore, and you die.  Back in the 80s or so, somebody had the great idea that if you harvested bone marrow from a cancer patient before chemo, you could use a much higher dose that would be lethal to the bone marrow and kill more cancer in the process.  That was okay because after chemo you would transplant the harvested marrow back into the patient and it would resume making blood.

Patients clammored for this.  They wanted painful surgery to transplant bone marrow, and they wanted their insurance companies to pay for it.  They sued their insurance companies for not covering the procedure even though no studies had been done to show it was effective.  Patients generally won these lawsuits and the insurance companies were forced to cover them.  Guess what?  When studies were eventually done in the 90s, they failed to show any benefit.  Just lots of extra expense and suffering for the patient for no tangible benefit.


So what does this have to do with malaria drugs such as Hydroxychloroquine?  With any drug, there are two important doses: The effective dose at which it is effective against the disease or condition it is intended to treat, and the lethal dose at which serious side effects or death become common.  For a “safe” drug the effective dose is much lower than the lethal dose.  Take Ibuprofen as an example: everybody gets 400 mg.  That’s enough to be effective for a 250 lb person and not enough to be dangerous to a 100 lb person.  Simple!  Chemotherapy drugs aren’t as safe, and the dose is based on body weight and height.  If a toxic reaction occurs, the dose is usually reduced or a switch to another drug made.

Pop quiz, can anybody tell me the effective dose for Hydroxychloroquine when used to treat Covid-19?  It’s a trick question: Nobody knows because those types of studies haven’t been done yet.  We do know based on experience with other diseases that side effects such as macular degeneration (which can lead to blindness) can become an issue at doses of 400 mg/day.  Meanwhile, a small French study using 600 mg/day (a not entirely safe dose, but probably okay for a few days) in combination with an antibiotic found “no evidence of rapid antiviral clearance or clinical benefit”.

That’s just one small study, but one that mentioned the dose used.  Results of other studies have been mixed.  It’s fair to say that the combined results of the studies that have been done haven’t lived up to the hype.  Malaria drugs might still turn out to be helpful, but aren’t a magic bullet.  If they do have a benefit, it may be in high doses when used on the critically ill who are perfectly okay with some chance of having impaired vision.

That is a bit speculative on my part, but I wanted to illustrate the difference between anecdotal evidence where it appears to work really well in one or a small group of patients, versus developing a formal treatment protocol where you can confidently tell doctors what dose to use, when to use it, and what side effects to expect.

They may eventually be shown to have some benefit, but perhaps at dosages that border on unsafe.  A risk of going blind may not be an issue if you’re about to die, but it is an issue if you have only mild to moderate symptoms and are expected to recover.  I don’t see doctors prescribing Hydroxychloroquine at the first sign of a cough and telling you to go back to work.

It’s disappointing to hear that the miracle drug promised on the television isn’t what it was advertised to be.  This is what cancer patients deal with all the time.  When I was first diagnosed with prostate cancer, I had high hopes for a drug called Prostvac.  It was an immunotherapy drug that would allow a patients immune system to attack cancer, and had very good results in early, small studies.  At the time of my diagnosis, a phase 3 trail was underway that would eventually lead to approval of this life saving drug, and it would eventually be available to me in the likely event that my current treatment eventually stopped working.

Unfortunately, the trial was terminated early because “At the third interim analysis, criteria for futility were met and the trial was stopped early.”  In fact, it appears the control group was doing ever so slightly better than the experimental group.  Suffice to say, this outcome wasn’t very good for the company’s stock price.

I feel your pain and frustration of being over-promised and under-delivered.  More importantly, now you don’t just know, but have felt a bit what cancer patients and others with chronic or life threatening diseases go through regularly.

My Quick Update

The third cycle of chemotherapy is kicking the tar out of me.  It was a rough first week, and the second week started with injections of Lupron and Xgeva for my original prostate cancer, which re-invigorated the side effects.  My bones hurt when pressure is applied to them, which is to say that whatever part of my body I’m laying on is painful.  It’s not awful pain, but I do need to take pills to be comfortable enough to sleep.

As I said at the beginning, the pandemic is taking the fun out of cancer.  Indoor track is over, no road trips to meet friends, no watching auto racing on TV.

But I’m slowly adapting.  Eventually I will get to video chatting with people, but am a bit hesitant after a recent phone call had to be cut short due to what I’ll politely call digestive side effects.  Also, by brain doesn’t always thing correctly.  You can’t tell right now because I have a backspace key.  Or maybe you can, I left the typos in an earlier sentence in this paragraph.  Spell checker said it was all okay.

I still get out for walks regularly, and occasionally throw in a short bit of running.  Why, just earlier this week I ran almost a quarter mile, and my heart rate only went up to 192 for that short, slow, downhill effort.

I’ve also rediscovered Gran Turismo 5 on PS3.  Playing it is a bit like an odd form of meditation.  If I don’t stay in the present moment of driving a car at high speed on a virtual race track, I quickly end up crashing into the wall.  This game can absorb hours very easily, when I’m feeling well enough to sit up for that long.

And of course I write blog posts occasionally as well, and think about what shockingly oddball pictures I can put in them to keep my readers amused and shocked.  Yes I know today’s image cannot be unseen.

16-ish Month Update

Note: This was actually written about 17 months after my original diagnosis.  I blame the miscount in the title on chemo brain.

Happy St. Patrick’s Day everyone!  Remember in these dark days of Covid-19 that cabbage is a good source of immune boosting vitamin C.

The world is truly going off the rails as a result of Covid-19, and I’m doing a happy dance.  No, wait, that came out wrong.  My happy dance is because I had a CT scan yesterday and it showed significant shrinkage in my tumors!  Chemotherapy is working!  I’m happy, but to some it may look like I’m fiddling while Rome is burning.

The oncologist shows us the scan before starting treatment alongside yesterday’s scan.  The large bladder tumor that crawled out of the prostate, the one that tried to choke my kidney to death, is significantly smaller and around a quarter of its original size.  That is every bit as good as I dared to hope for going into the scan.

My understanding of the way chemotherapy works is that it usually kills off a fixed percentage of the cancer every cycle.  For example, it may kill 50% of the cancer the first cycle, and then 50% of the remaining cancer the next cycle, leaving about 25%.  Conveniently this seems to be exactly what’s happening in my case.  With four more cycles to go it’s not unreasonable to expect the tumor to continue shrinking to 12%, 6%, 3%, and finally 1.5% of its original size.  At that point it may be too small to be visible on a CT scan, but most likely there will still be a small colony of very hearty cancer cells left.

After chemotherapy, I’ll continue indefinitely on the immunotherapy drug.  The hope here is to continue attacking what’s left of the cancer with my own immune system.  Any stubborn spots could also be attacked with radiation.  If I didn’t have such a great response to chemotherapy, I would have been referred for radiation treatment right now.  The end goal of all this in the best case scenario is to drive the cancer to such a low level that it has great difficulty trying to grow back.

And those metastases in my liver?  They’ve already shrunk to such an extent that they are all but undetectable in the CT scan.  That is fantastic news.  Cancer in the bones and bladder and prostate can be extremely painful but usually isn’t directly fatal.  Cancer in the liver or another vital organ is a different story.

The oncologist didn’t say anything about the primary tumor in my prostate or the metastases in my bones, and I didn’t think to ask (yet).  The scans were studied by both the oncologist and radiologist who spoke with each other.  If there were any spots in the scans to worry about, they would have told me.

This is the first bit of objectively good news for me in 2020!  It shows that the improvement in symptoms are a real reflection of the state of my cancer, and not due to some combination of painkillers and wishful thinking on my part.

Photo Ops
Some photos for those of you that don't follow me on Facebook (though there are a couple of never seen before photos included!).  This section should be considered the slick marketing brochure that makes cancer seem like a fun filled journey, and not representative of the overall experience.

When I started this blog many years ago, it was supposed to be about cars as much as about running, and cancer was never part of the plan.  Getting back to the original intent, here's me recently changing the oil in my Prius, a surprisingly easy job for such a complicated car:

Note the amount of hair loss / follicle damage my head has endured, that will be relevant when reading the next section.

And of course, any DIY service on a car should be followed by a celebratory scenic drive:

I also took a road trip down to Barre Falls Dam and had a walk along a short section of the Midstate Trail (which goes right down the top of the dam):

And finally, the last night of indoor track for the season, only days before everything started getting cancelled.

Blood Counts and Covid-19
Chemotherapy works by killing fast growing cells.  If you have an aggressive, fast growing cancer like I do, then it can actually work better than it does for somebody with a slower growing cancer.  The body has a lot of naturally fast growing cells like hair follicles, the cells that line the lungs and digestive tract, and blood cells.  These cells are all killed by chemotherapy, but they will recover and with a bit of luck the cancer won’t.

As evidenced in the "oil filter" photo above, my follicles have been largely decimated by chemotherapy.  What's not visible in the pictures is that my lungs and digestive system have been equally affected.  After a few quick steps and a jumping catch in that last photo, I'm practically out of breath.  The digestive damage shows up as a tendency to have frequent and sometimes loose bowel movements.  To whoever has been hoarding all the toilet paper, please think of me and return the unused rolls to the store, or things will get rather messy in a few weeks.  Trust me, you don't want to see the pictures of that, and my past history shows that I will post them.  That's our agreement: no hoarding TP, and you won't have to look at any messy pictures.

Most chemotherapy drugs will affect blood counts, but the nature of the effect varies with the drug.  On the Docetaxel chemotherapy I had last year, my blood counts would plummet in the first week, and by the end of the cycle regularly rebounded to above normal levels.  I felt reasonably safe in public because for part of each cycle my immune system would be working very well, and there weren’t any uncontrolled viruses going around killing people in significant numbers.

It’s very different this time around.  Carboplatin and Etoposide both have a longer laster effect on blood counts.  My counts don't bottom until the second week, and haven't recovered to normal levels yet by the start of the next infusion (but have recovered enough to make the oncologist happy).  The count that really matters for immunity from infections is the absolute neutrophil count, or ANC.  Before chemo, mine would vary between 4 and 7, but anything above 2 is considered normal.  I've been bottoming out during chemo at about 0.5, or roughly 10% of my normal infection fighting ability (assuming it's linear with blood counts, "I'm not a doctor" disclaimers apply).

Levels below 0.5 are considered severe neutropenia, and the risk of infection skyrockets.  Forget Covid-19, we're talking about being careful flossing your teeth, because if your mouth bacteria gets into a bleeding gum it could spiral out of control, leading to hospitalization and IV antibiotics.  I've also heard recommendations to avoid shaving with a razor and avoiding fresh fruit and uncooked vegetables.  Of course I'm only just reaching that level, and only for a relatively short time.  But, my counts aren't rebounding above normal like they did last time.

The other problem is that when my counts do recover to almost normal, I'm already into my next cycle and on a high dose of an immune suppressing steroid to help control the side effects of treatment.  When that wears off my counts are already dropping again.  There's really no time where I have full immune function.  As a result, I was becoming socially distant before it became trendy.

Enter Covid-19, and I have developed a serious aversion to people.  So of course, when I went to the hospital for my CT scan, they were directing everybody through the ER entrance so they could screen people (have you been out of the country?  Do you have a fever?, etc.) and immediately isolate them if needed for further evaluation.  This is all to protect the staff and patients in the hospital.

And now the funny bit:  Who is the one person in the entire hospital who could process my co-payment for my scan?  Why, the receptionist at the emergency entrance of course.  Next question: Where would somebody with a severe case of Covid-19 go for treatment?  To the emergency entrance of the hospital!  Did I mention that my CT scan was scheduled when my immunity was at its lowest?

This all led to the death defying “Super Dave Osborne” stunt of my life:  Standing around waiting at the entrance of the ER with a compromised immune system.  This was social distancing done exactly wrong.  The staff had masks and healthy immune systems and talked about the guy in really bad shape who was just admitted, probably with only a severe cold.  I had nothing to protect me and waited while the receptionist battled an uncooperative printer for some time trying to get my receipt.  If I’m dead of Covid-19 in a couple weeks, blame the printer.

On the bright side, I had stopped worrying about what my scan might show.

And now I return to my social isolation, heading outside only to exercise or go for a walk in the woods, and maybe occasionally hang around at the ER entrance.  But hey, I’m an adrenaline junkie who will happily put my life in danger for the next adrenaline rush.

Day 504, Second Chemo Cycle

Here again we have a case where I wrote a blog post to commemorate 500 days since my original cancer diagnosis, and most of it went into the trash bin as being too negative and depressing.  The problem happened when I started thinking and writing about how I spent those 500 days, and only about 200 of them were in a state of relative good health.

Mathematically, it wasn’t a good ratio of days spend suffering symptoms and side effects to healthy days, and I found that depressing.  It may be accurate, but it’s not a helpful way to look at the experience of living with cancer.

I am not in good health today, having spent the previous three days getting three infusions of chemotherapy drugs.  But let’s back up a bit.  Prior to chemotherapy, during those 200 days of relative health, I was on about 8 drugs to control my cancer as well as manage more sundry things such as cholesterol.  With yet another cancer diagnosis and the start of more chemotherapy, that number has zoomed to 20 or more this week.

That number includes an immunotherapy drug, two chemotherapy drugs, and a handful of drugs to control the side effects of those drugs such as the anti-nausea medicine Zofran.  Drugs like Zofran didn’t exist decades ago in the early days of chemotherapy, and many patients would vomit to the point of needing hospitalization.  I’ve only suffered periods of queasiness of perhaps an hour or two between doses.

Of course, Zofran causes constipation, so add Senokot to the list to keep me moving.  Now add Imodium because the chemo drugs eventually cause diarrhea, and that happened a bit earlier than expected this cycle.  It gets a bit messy when I mis-time the changeover.  It’s also one of the many reasons I’m very happy to be on disability leave and not trying to manage such things in an office environment.  How some people work through chemo and keep their cancer a secret I’ll never know.

Here’s another great drug they’ve given me: Decadron.  This is a powerful steroid.  The doses I’ve been given over the last three days are the equivalent to almost 300 mg of Prednisone.  It also helps with nausea, but also suppresses any immune response to the chemo drugs and relieves pain.  I’ve been pain free without steroids since Monday morning.  Side effects include improved mood and energy, which means I’m able to get off the couch and exercise a bit.

Exercise during chemo is hugely important.  Emerging evidence is showing that exercise can make tumors more responsive to treatment.  I’ve gone for at least a walk every day this week.  Some have included short bits of jogging.  Yesterday I even spent about 10 minutes tossing a frisbee around with a friend, including a few short sprints to make a catch.  It felt awesome because after my original diagnosis I couldn’t move like this due to too much bone and joint pain.

So despite the ridiculous amount of chemistry going into my body, I’m out getting exercise which will help fight my cancers instead of sitting in a hospital room vomiting.  In this case, better living through chemistry is a real thing!  I am not an super hero, though I sometimes portray one in this blog.  Mostly, I’m a guy that had some fitness prior to chemotherapy and have benefitted from both that and advances in cancer treatment.

That said, I do spend a lot of time resting on the couch and binging Netflix when not playing games on my tablet.  Later today the support medicines will start wearing off as the collateral damage from the chemotherapy builds, and I’ll go through several days where I’ll be mostly offline to put it politely.  By the end of the weekend the worst of that should be over.

After that, I’ll start to feel better but my immune system will be decimated.  This means trying to avoid crowds and sick people.  What would normally be a routine infection for a healthy person can result in hospitalizations and even death during chemotherapy.  I don’t just worry about coronavirus, I worry about every virus and bacteria. 

With luck, the immune system will recover just in time to start the next cycle on schedule.  It didn’t fully recover to normal levels after the first cycle, but the oncologist deemed it more than good enough to continue with treatment.  This is a distinct difference from the chemotherapy I went through last year.  That was a different drug which decimated my immune system earlier in the cycle, allowing time for it to recover to above normal levels before the next cycle.

This latest diagnosis caught me completely by surprise.  The frequent testing was supposed to be an early warning system for the return of cancer, but my new cancer is a type that can’t be detected in blood tests.  I’m fighting cancer again much sooner than I was expecting.  I was hoping to live in partial remission progressing to complete remission over several years.  I only got six months.  Technically I’m still in remission for my other cancers, as my oncologist considers this a third and separate cancer diagnosis.  I haven’t figured out if that detail makes me feel better or worse.

Weight loss was a problem in the first cycle of this chemo.  I had been trying to eat healthier to keep the cancer away, but that goes out the window during chemo.  In addition to the obvious hair loss, chemo is also damaging my digestive system and lungs.  Food doesn’t taste as good and I don’t absorb nutrition as well.  Raw fruits and vegetables are not only hard to digest but can introduce bacteria that are an additional challenge for a compromised immune system.

Between the weight loss and depression over my diagnosis, I went on what could be called a sausage party (to misuse a slang term).  Sausage in my omelettes, sausage on pizza, sausage and peppers on pasta.  I like sausage like many people like bacon, and had all but stopped eating it in the past year.  Now I’m having it every few days.  It’s tasty, low fiber, and calorie dense.

In the context of chemo, this isn’t entirely a bad thing.  Weight loss causes all sorts of problems such as loss of lean mass and can further compromise immune function.  My mantra has been to obtain a healthy weight first, then worry about eating healthy food second.  Of course, I’m one of the rare people trying to gain weight, not lose weight.

And now for the happy ending to this post (again, misusing a slang term).  There are signs that chemotherapy is working very well.  All that excruciatingly painful urination I blogged about recently?  Mostly gone.  What pain is left is probably due to the presence of the stent and is entirely tolerable.  My bladder capacity has also increased allowing me to sleep for several hours between bathroom trips, which for prostate cancer patients is a huge deal.

Such signs of progress have greatly lifted my mood.  While my prostate cancer diagnoses have been extremely bad, my responses to treatment have generally been extremely good.  I now have concrete reasons to hope that pattern is repeating again.  Hope may not cure cancer but it certainly improves quality of life.

Hope is why I’ll be cutting back on my sausage intake again, if not immediately then at least in the not too distant future after my weight is stable.  It’s what gets me out and exercising.  These are all things that science is beginning to show helps with cancer survival.

Immunotherapy is another reason to hope.  It frequently doesn’t work well, but when it does it produces spectacular results.  I’m talking to more and more patients who  have been on it for years, have clean scans, and are eventually getting off of all cancer treatment.  We advanced cancer patients are careful never to use the word “cured”, and there will always be lifelong consequences to treatment.  But the thought of no longer being dependent on some obscenely expensive pharmaceutical to merely stay alive is a huge thing to look forward too.

No need to worry about the drug companies, they’ll make a tidy profit off me in the process and the cancer patients that follow me.

Treatment appears to be working, I’m not having any life-threating side effects, and spring is coming.  Things will get worse before they get better as the side effects build with each cycle, but there is hope.  By summertime I should be in the process of getting back to good health, and there is every possibility that I’ll greatly benefit from current and soon to come advances in cancer treatment.  Immunotherapy should help fight all my cancers.  Complete remission from three cancers is still a possibility.  That and signs of progress (and the steroids) are helping lift my mood.

Please remind me of this during the dark days to come this weekend as the side effects consume me.

Of Cats and Cancer

Recently I was listening to an online talk about meditation.  Thoughts are transient and without substance.  Think of a thought as a cloud in an otherwise blue sky.  Imagine it dissipating as it slowly drifts away.  Too bad my anxiety fueled obsessive thoughts don’t dissipate, but can remain lodged in my head for hours.

But it wasn’t a useless lesson.  My thoughts are like the cat meowing for his breakfast, insistent and annoying.  If you feed the cat in response, you’ll only encourage it to come back and be more insistent and more annoying the next time.  These thoughts are best ignored or noted for later consideration, but that doesn’t immediately stop them from being insistent and annoying.  I’ve developed an impressive ability to ignore the cat’s meowing, I can do the same for obsessive thoughts.

With my recent third cancer diagnosis, a painful stent in my urinary tract, a bump in my chest from the chemo port, and a case of chemo brain, my head has turned into crazy cat lady central.  I simply can’t count the number of obsessive thoughts meowing away.  Frankly, it’s enough to aggravate my allergies.

The most basic question I face in my life today is which cats do I want to feed?  Which ones do I want to encourage?  Here’s one that’s making a contended purring sound, he gets some kibble.

I’ve written previously about my dire diagnosis and atrocious prognosis.  It’s good to be mindful of it to the extent that it keeps me motivated to stick with the treatment plan and seek out anything that can help me limbo under the low line of the survival curve.  But beyond that, it’s not good dwell on it.  We’ll keep this cat in a crate in a corner of the basement.  That’s not animal cruelty, it’s just a metaphor.  No actual cats are being kept in crates in my basement.

The cat I’ve chosen to adopt, call my own, and allow to freely roam around the house is called Mizuno, the marathon cat.  He was written out of “Cats”, the musical, as his name was difficult to rhyme and sing.  Tough break.  But I digress.

I fully believe that my treatment will be effective and allow me to train for and run a marathon.  If anything, the biggest obstacle between me and my second marathon is overuse injuries to my joints, as that has scuttled several previous attempts.  Since my diagnosis I no longer have a time goal, just a desire to finish a marathon no matter how long it takes.  That will hopefully translate into less joint stress.  In fact, I plan to walk as much as run in this marathon.

It’s a Jedi mind trick I play on myself.  Cancer is not viewed as a deadly disease (though it still is), but treated as a mere obstacle to my marathon goal.  It’s a problem that must be solved.  The tumor in my bladder must be shrunken to the point where the stent can be removed, so that I can resume long runs without pain and blood in my urine.

Being able to envision a meaningful future is key to keeping my sanity.  It’s the difference between enduring cancer treatment, or simply suffering medical torture.  Laying around the house most of the day watching Netflix may sound like a lot of fun to some people, but it’s leaving me quite uninspired.

There are parallels between marathon training and chemotherapy.  Marathon training involves periodic long runs which are stressful to the body and cause it significant damage.  Following each long run it is necessary to rest and have shorter, easier runs while the body recovers from and adapts to the long run.

Chemotherapy is similar. Instead of a long run, the body is stressed by having poison injected into it which causes significant damage.  Following each infusion is a period of rest, gentle exercise, and recovery.  Where chemotherapy and marathon training diverge is that the body generally gets stronger and more fit during marathon training, while with chemotherapy the body is beat further and further down with each cycle.  Oncologists would make bad marathon coaches, as they would definitely overtrain their athletes.

Mizuno, the marathon cat is the cat I choose to feed.  May he live long and have many kittens, including PET, the complete remission kitten, Peaks, the hiking kitten, Splinter, the firewood cutting kitten, and Jobber, the return to work kitten.

Routine Update

Chemotherapy is going as well as can be expected.  While I still have pain, it’s now generally responsive to pain medication and hasn’t gone past the end of the pain scale since chemotherapy began.  As this cancer can’t be tracked through blood tests, there’s no way to tell if this is due to tumor shrinkage, or just my urinary tract settling down after having the stent inserted.  I’ll be scanned again at some point during chemotherapy, and that will show what the tumors are doing.  There will be a lot of scanxiety associated with that scan I’m sure.

Side effects are the usual suspects of nausea and digestive issues and pain, all manageable with pills.  There’s also fatigue, which is exaggerated by the previously mentioned pills, and can’t be helped but to get a bit of exercise and plenty of rest.

Last week, just hours after my most recent chemo infusion I was running around at the indoor track, though with lots of walking because of that annoying stent.  This wasn’t an act of superhero powers, but rather a combination of my fitness from before treatment began combined with dexamethasone keeping the chemo side effects at bay.  Let me put it this way: Cancer and its treatment have reduced me from running 10 miles to walking 2 miles and everybody is just amazed at how active I am, while I look at myself and see an 80% reduction in capability.

And of course, I wrote that paragraph prior to this week’s indoor track session, which turned out to be a bust.  I had overestimated my progress, and started off with too much running on not enough pain medication, and after a few laps had pain and an insatiable urge to pee, even though I just went a moment ago and my bladder was far from full.  So I’m in the bladder penalty box for now, when I recover in a day or so I’ll go back to walking which I’ve been doing recently with increasing success.

But hey, I’m still here, still moving, and still able to cover short distances at a genuine run!  I’d like to give a shout to a couple of my “fans”.  First is Jen, who unknown to her is the head of my cancer battle PR department, for her dedication to always getting an action shot of the two of us at the indoor track (from last week):

Also my sister, for texting me an amusing, personalized cartoon to commemorate my running during treatment.  Yes, I do love these drugs, they are allowing me to continue living life and telling a good story along the way:

And finally, for reasons I can’t really explain I feel a need to close with a topless photo of myself, showing what cancer treatment has done to my body.  Starting at the bottom, my right hand is pointing at a little green dot tattooed onto me and used as an alignment mark during radiation treatment back in 2018.  The first three fingers of my left hand are pointing to the incisions made when installing my port.  They look like I just scratched myself in the photo, but they're scars which trace the path of the tubing from my port, up and  over the collarbone and into a vein.  The pinky finger is pointing directly at the port, which looks almost like a third nipple.  Good luck getting that vision out of your head.  And finally, my chemo-fro hair do, which is still curly from the first chemo treatments.  I’ve let it grow completely wild, expecting it to fall out again in a week or two.

Some people may look at this photo and remark at the muscle atrophy caused by androgen deprivation therapy, but no, I've always been scrawny like that.