Thanksgiving 5K Race Report

 Way back in the year 2008 I started running races, including the Ayer Fire Department 5K on Thanksgiving day.  Every Thanksgiving day since I've run the same race, until this year when it was canceled due to the pandemic.  Being stubborn, perhaps even a bit obstinate, I wasn't going to let that stop me from continuing my streak of running a 5K on Thanksgiving day.  But how to do that when all races have been canceled?

The remainder of this post will make more sense if you remember what it was like to be a kid.  A simple game of whiffle ball in the street wasn't just a game a whiffle ball, it was frequently the 7th game of the world series.  So with my tongue firmly in my cheek and imagination on overdrive, I humbly submit my race report for this year's Windham Turkey Trot 5K.

This race was initially conceived a couple years ago, when I observed that the shortest loop I could run near our weekend getaway was very close to a 5K distance, give or take a few hundred feet.  It's hilly, has a couple good mountain views when the weather is clear, and goes right by the pond.  A scenic and challenging course indeed!

A couple days ago I appointed myself race director.  Due to the pandemic and lack of any parking at the start/finish line, entries were strictly capped at one runner on a first come first served basis.  Of course, I signed myself up a nanosecond after registration opened.

Now at this point it should be mentioned that people outside of the USA have read my blog and know that I'm a runner, which means I'm a world famous runner.  Normally, at they Ayer 5K the streets are lined with hundreds of my fans cheering me on.  They cheer on the other runners too, but it's a poorly kept secret that I'm their favorite.

Once again the pandemic is interfering with things, and I had to ask all my fans and the residents of Windham not to come out and cheer me on at this year's 5K.  I was humbled at how they responded.  Not a single person was anywhere to be seen along the entire course!

In honor of the canceled fire department 5K I'd normally be running, the dry fire hydrant at the side of the pond was chosen as the start/finish line.  At some rather random time in the early afternoon, I toed the start line, counted down, started my watch, and off I went.

The course starts out flat for a few hundred feet, until it goes past the manmade dam that formed the pond.  At that point it dips slightly, goes around a curve, and then steeply uphill.  That's followed by a steep downhill, then another steep uphill that leads out to the main paved road.  Up until there it's a rather soft and squishy surface due to the rain falling on the gravel road.

In my best days, I could never maintain a run up these steep hills which frequently exceed a 10% grade.  In my rather anemic condition, a casual walk uphill is a hard effort, and I only jog on the downhills.  My target time was about 55 minutes, which is not quite twice as long as it took for me to run a 5K a year ago, when my hemoglobin (Hgb) was at the low end of normal.

Allow me to go off on a tangent and say I don't understand anemia.  Due to all the chemotherapy I've received this year, my Hgb had dropped from the mid 13s down to the low 11s, or about a 20% drop.  This is considered mild anemia.  I'd reasonably expect my runs to take about 20% longer, but in practice it's closer to 100%.  Maybe I'm looking at this the wrong way.

Anemia is considered life threatening when Hgb drops to about 6.5.  Below that the blood can't get enough oxygen to vital organs and they begin to fail.  Using that as a reference point, when my Hgb is 13.5 I'm about 7 units above what's needed to just maintain life.  At 11.1 (my last reading) there's only about 4.6 units to spare.  When viewed that way, and considering it's more difficult to maintain high heart rates during chemo, it suddenly makes sense that my running times have almost doubled.  I'm not a doctor, just a curious cancer patient and these are the things I think about when I'm not feeling well, have internet access, and too much time to think about such things.

Back to the 5K.  Once out on the main road it alternates between uphill and steep uphill until approximately the halfway point.  Then it flattens out for a short bit and goes steeply downhill.  The best views are right around the start of the downhill, but due to the weather visibility was limited.  Still, it was scenic to look at the hillside not far away and see a layer of clouds near its summit.  Down below the hill at the bottom of the valley is the road I'd be turning onto shortly.

I normally fly down this hill, but today I was content, perhaps overjoyed that gravity allowed me to manage a slow jog for more than a minute.  At the bottom of the hill, a left turn puts me back on the gravel road that goes through the valley and back towards the start/finish line.

This is a mostly flat section of gravel road that I usually cover near the end of any number of routes I run in the area.  It's a stretch of road associated with exhaustion near the end of a run, combined with the adrenaline rush of knowing the finish is near.  I started alternating running with walking, being careful not to put myself too deep into the red zone that would cause consequences later.  Suffice to say I was leading a 5K for the first time in my life (and being the only entrant, bringing up the rear at the same time), and the adrenaline was making me go faster than I normally would on a routine run.

I crossed the finish line in a record setting time of 53:02.  That's the nice thing about being the only runner in a race that's never been run before: If you finish you're guaranteed to set a record.  After crossing the finish line, a heated dispute erupted between me, the runner and me, the race director.

This course was not formally measured before hand.  It was decided by the race director that the start and finish should be at the hydrant for simplicity, and if the race distance wasn't exact it wouldn't matter because all runners have to run the same distance.

But this course turned out to be slightly long.  Me, the runner, argued that it would be closer to 5K if the finish line was at the utility pole before the hydrant, and the several hundred feet of extra distance makes comparisons with other 5K times difficult.  Me, the race director said that the finish line was chosen before the start of the race, and if I didn't shut up I'd be forced to disqualify myself for arguing with the race director.  Geeze, what a dictator that guy is.

Even with the extra distance, I beat my time goal by about two minutes.  The weather was also weird because at the start it was raining lightly with fog blowing off of the pond.  Out on the main road there was pale blue sky overhead and hints of sunshine.  But back at the finish it was still foggy, and as I write this not too far from the finish line it is decidedly cloudy and foggy.  This isn't the first time this has happened.  It's like our weekend getaway has one of those cartoon clouds semi-permanently lingering over it.

And that was my Thanksgiving day 5K for 2020, extending my streak to 13 consecutive years.  In a way, the pandemic worked out well for me this year.  I tend to wake up with a benadryl hangover and don't move too well until the anti-inflammatories kick in.  It would take some planning and effort to get out the door and be ready for an 8am race start in another town.  Being able to walk to the start line at my leisure in the afternoon worked out really well for me this year.

It's strange, but even though this is largely make believe, just having the idea that I would race a 5K on Thanksgiving day gave me something to look forward to, and just like an actual race I pushed harder than normal, and even harder still when the finish line came into sight.

Quick Post

I'm going to try to write a blog post from start to finish in about an hour.  Perhaps that way it won't become out of date before I publish it.  This is as close to live blogging as I get.

Today is Sunday, and it's a grey, cold day in New England.  I had my second infusion of cabazitaxel six days ago on Monday, and all else being equal (it never is) this is usually when I expect to start feeling better.  Better is a relative term.  I spent about an hour in the bathroom last night as the lower portion of my GI tract tried to decided if it had diarrhea or not.  The experience was enhanced by just enough nausea that I asked my wife to get me a bucket.  Fun times!  Living each moment to the fullest!

Back to the grey, cold today, and what isn't equal.  I've been cutting back on a couple medications like Bupropion, which is an antidepressant that normally lifts my mood and gives me some energy in the short, dark days of winter.  Unfortunately when I try to go up to two doses a day this year it just makes me anxious.  I'm also tapering off Prednisone since I no longer need it.  Prednisone withdrawal symptoms include aches, pains, nausea, and fatigue, in other words stopping it now is precisely what you'd do if you wanted to accentuate the side effects of chemotherapy.

I woke up this morning and many of my bones hurt.  My guess is this is a combination of cancer and Neulasta.  Neulasta is a drug that boosts immune cell production, and is thought to cause bone marrow to swell slightly as a side effect.  When that marrow is in a cancer damaged bone, "ouch" is a good word to use.

I disregard most of this pain because it came on all at once a couple days after chemo, which in my mind usually means it's a side effect.  However, there is one specific rib that is particularly painful, and has a lump I can feel under my skin, and it can be very painful to touch.  I assume this is also the same rib that was noted as having progression in my last CT scan.  It takes super-human skill not to freak out when you can physically feel a tumor on your bone when you're laying in bed, and see the bump in your skin when the sunlight coming in at a low winter angle hits it just right.  I'm not super human, I do freak out.

But there's every reason to believe that bit of cancer is being attacked by the chemo.  I've certainly had treatments before which has made pain worse, but a subsequent scan shows improvement.  If it doesn't respond to chemo, it might be a good target for a few zaps of radiation.

So back to this morning.  Pain, fatigue, lack of motivation.  I'm just plain old tired of laying on the couch or in bed all day, watching TV and playing games on my tablet.  I know what's going to happen next.  I'm going to cry, and I'm going to get all worked up about all the things I can't do anymore, and then a week or so from now I'll be doing them, but perhaps a bit slower due to anemia.

There was no other choice.  I forced myself out and into the car and took a short road trip to Erving state forest.  It's just a random destination I've never been to about an hour's drive away from home, and at this time of year there shouldn't be many people around.  I was in mild pain and somewhat anxious, but if I took anything for those symptoms it might affect my driving.  Sober and uncomfortable it is.

My only regret on this trip was that when I stopped for gas, it wasn't at an Irving brand gas station.  The wordplay of stopping at Irving on the way to Erving would have made me smile.  Oh, and I also wish I brought a water bottle along and a few ginger chews for transient nausea.

Having put "Erving State Forest" into Google Maps, I simply followed the directions to my destination.  In this case it was a parking lot next to Laurel Lake.  There's a lot of mountain laurels in the surrounding woods, and apparently they named the lake as quickly as I'm writing this post.

Here's a selfie of me in the parking lot.  If you zoom in you might be able to make out the "Erving State Forest" sign behind the car.  You'll also notice that I have a very full head of hair, as it's showing no sign of even thinning on this chemotherapy.  That is somewhat unfortunate as I'll have to figure out what to do to control it as it gets longer and more unruly.  Having one's hair fall out does save a lot of angst over how to style the stupid stuff.  I'm also quite scruffy, because shaving requires just a bit more effort and enthusiasm than I've been able to muster for the last several days.  Remember, I didn't take this trip for the joy of the open road, it was to avoid a meltdown if I didn't go.  It's mostly stick and no carrot.

It was a very short walk to the beach on the lake.  I don't know why everybody is complaining about people who don't social distance on the beach, I had the whole place to myself.  Of course, this isn't exactly Florida, and it was cloudy and 40 degrees.  Even I couldn't get a sunburn on a day like this.

I tried walking along a path at the edge of the beach that went along the shore, only it wasn't very much of a path.  There wasn't much brush so it was pretty easy to travel through the woods, and there were picnic tables and grills scattered about in the woods.  I wonder how they got there with no trail or access roads.  Do people brute force these things and carry them by hand in this day and age?  Once again, nobody around.

Shortly afterwards I went from the woods back to the paved road along the lake, which was much easier walking except for the hills (it is New England, nothing is ever flat).  Not too far from the beach there were several seasonal cabins, and I could see a number of them on the other side of the lake.  I came across a boat ramp further down, and was surprised to see they allow water skiing.  It's a tiny lake, at water skiing speeds you'd be across it in about a minute.

And so, these are the lengths I need to go to in order to keep my spirits up, with cancer, during a pandemic, when I'm afraid to start a conversation with certain people for fear of politics coming up.  Election week was very stressful for me, and it continues to be stressful if I watch the news too much.  It's no longer about which policies are best for the country.  It's about whether you believe the Democrats committed fraud by adding illegal votes to the election, or that the Republicans committed fraud by claiming there are a large number of "illegal ballots" that don't actually exist.  Neither answer points to us living in a well functioning democracy, and that's just depressing.

At the risk of ending on a happy note, I'm still here on the planet and partaking in the game of life, and my urinary function is continuing to improve.  I pass clear yellow urine without pain, don't leak when it's not time to go, and now have enough bladder capacity and lack of urgency to sleep through the night without having to get up to pee.  Things have improved noticeably since starting chemo, and perhaps that's a sign that chemo is working.

Fingers crossed that this chemo is working.  As I got back to the parking lot I found a hiking trail that claimed to have views of Mt. Monadnock, and didn't have the energy or time to explore it.  I must return to this place for more exploration, and I'm far from done poking around the less populated areas of New England.

The October Roller Coaster

 I wish I could go back a week or two in time and talk to myself.  I’d say don’t get too caught up in the hysterical crying and negative thinking.  You (or should it be “I” when talking to my past self?) will be enjoying more nights at our getaway in Vermont even though it honestly felt at the time that that ship had sailed.

I’m actually writing this post in Vermont, warming myself by the wood stove with the occasional soothing sound of rain on the uninsulated roof.  I’m waiting for my painkillers to kick in so I can be fully comfortable sitting, but that hasn’t stopped me from carrying a couple loads of firewood up from the basement.

To be sure, the month of October has been a bumpy ride.  It started with a scan at the end of September that showed progression of my neuroendocrine prostate cancer.  This isn’t particularly happy news.  I’ve heard of a number of cases where men with neuroendocrine prostate cancer have progressed after platinum chemotherapy, and the the majority of those men are now dead.

So naturally, I assumed this was the beginning of the end.  It’s not that I’m out of treatment options, as there are many to choose from.  But it is time for my doctors to think “out of the box”, and I mistakenly thought this would mean treatments with severe side effects and little chance of long term success.

Yet here I find myself today, having started a different chemotherapy drug, cabazitaxel, last week.  I am decidedly more functional and more levels above simply being “not dead” than I ever imagined possible.  At my follow-up visit earlier this week, the nurse practitioner assured me that my fears of an imminent death are largely unfounded.  She and my oncologist both seem very hopeful of finding a treatment to beat the cancer back again, and would like me to stay focused on that.

It should be noted that in addition to starting cabazitaxel, I’ve stopped taking abiraterone and it’s companion prednisone, and I no longer receive atezolizumab infusions.  So another way to describe my situation is that I’m currently on fewer drugs and in what is apparently a surprise to me, experiencing fewer side effects as a result.

Let’s go back about 10 days, to when my wife and I took a day trip to Vermont.  In retrospect, I have a pretty good theory as to why it felt like a disaster.  Firstly, I was tapering off prednisone and my body was experiencing withdrawal.  Secondly, after stopping Abiraterone my “normal” prostate cancer was waking up resulting in unexpectedly severe rib pain and a corresponding spike in my PSA blood test.  Finally, the trip was two days after a liver biopsy, and the day before my first cabazitaxel infusion.  My wife was driving, and I was in the passenger seat with rib pain that was breaking through a combination of ibuprofen, tylenol, and oxycodone.  On top of all that, I got really nauseous on a curvy section of rural road and had to ask her to pull the car over.  I didn’t toss cookies, but it was close.

Given how I was feeling on that day, is it any wonder that I expected chemotherapy to make me feel even worse?  That trip felt like I was saying farewell to our Vermont property, because obviously chemo would make things even worse while not producing any beneficial results, and life would go further downhill from from that unexpectedly bad day.

I was wrong.  It’s too soon to say if cabazitaxel is working or not yet, but excepting the first few days the side effects aren’t nearly as bad as I was expecting.  In addition, being off of abiraterone and atezolizumab, slowing my prednisone taper, and having had my urinary stent removed a few weeks ago have all improved my quality of life.  My rib pain has stabilized or even subsided since my first infusion, which may indicate that cabazitaxel is at least working on the cancer in my bones.

It’s almost enough to give me hope.  But I had high hopes that abiraterone would control my cancer for at least five years, and those hopes were crushed.  Then I had hoped that atezolizumab would keep the beast at bay until at least late 2021, and that hope was crushed.  These weren’t arbitrary hopes, but were based on median time to progression in clinical trials.  Now there’s little data to go on, and I’m afraid of getting my hopes too high only to have them crushed again.

I’m finally learning to live one day at a time and maybe the doctors will find a treatment plan that will control my cancer for some unknown length of time.  While the doctors do their job, my job is to keep my spirits up and my body as healthy as possible to withstand the rigors of cancer treatment.

Let’s go back to the day before my biopsy, when my wife and I celebrated our 25th wedding anniversary with a scenic drive around New Hampshire and a short hike at Chesterfield Gorge.  We’ve driven by the gorge for decades on our way to and from Vermont, but never stopped to investigate. As our anniversary was on a Wednesday, I’d normally be at work.  Without cancer, we’d drive to Vermont for the weekend where I’d go out on an epic 10 mile run/walk/hike hybrid, and then we’d celebrate our anniversary with a dinner out.

But because of cancer my wife and I are now spending more time together than we ever have, and since the gorge was closer than Vermont it made for a great destination that was close enough where I could confidently drive my Mustang without fear of getting saddle sore.

The weather couldn’t have been better.  There were several places along the path where you could sit and admire the water flowing down some steep rocks.  When I run or walk, it’s almost always like I’m training for a marathon.  The idea of walking for a bit, sitting in the woods, then walking some more is my wife’s specialty, and something that would be beneficial for me to learn.  In addition to the stream, there was a steady rain of yellow leaves falling off the trees.

On the way home we drove past some pastureland with a really nice view of the distant foliage covered hills on one side, and a barn full of cows on the other side.  I’d alternate saying “Oooh!” at the scenery while looking left, then turn my head to the right and say “Mooo!” at the cows, then “Oooh!” at the scenery to the left, and again “Moop!” to the cows.  Even with cancer and a biopsy scheduled for the next day, I can be an especially silly person.

Our anniversary was different because of cancer.  Not necessarily better or worse, just different.  It’s not what we would have planned a year ago, but given the new realities we were able to take advantage of the weather and what health I had on that day and make the day enjoyable for both of us.

Speaking of the biopsy, that was an eye opening experience.  I turned the day into an experiment.  They saying goes “make the most of each day”, but how do you make the most of having needles shoved into your liver under conscious sedation?  I simply chose to be as silly as possible for the day and observed what happened.

It turned out to be a great day.  Partly this was because I was talking with many nurses and a few doctors, and any social interaction feels good during a pandemic.  But it wasn’t just me that felt better.  I was able to get at least a giggle out of most people I spoke with that day.  At one point, the unseen patient behind the curtain in the next bed over laughed out loud at my extremely lame ultrasound joke (“Is it a boy or a girl?”).  And I know she was laughing at my joke, because she specifically said so.

During the procedure, I was minimally sedated, and asking a ton of questions like a curious child.  I guess that didn’t bother the doctors because they never gave a nod to the nurse to increase my sedation.  They stuck four needles into my liver, and I only had mild pain on the last one as the fentanyl was wearing off.

After the procedure, when I got back to the recovery area, the nurse asked if I wanted anything to drink.  I asked for a martini, and without missing a beat she said martini day was yesterday, and would I like a ginger ale instead.  She later said she really enjoys patients she can joke around with.

I suspect I’ll look back at that liver biopsy as the day my life changed forever.  Perhaps it will be because the biopsy results pointed me at a new treatment that cures my cancer, but even if that’s the case, it will also be the day that I proved to myself that attitude is everything.  Attitude most likely will not cure my disease, but it will make living with it so much more enjoyable.  There’s no law that says you have to be grumpy just because you have an incurable disease.

I still expect to have bad days.  It’s a natural part of living with cancer, particularly when things are changing unexpectedly for the worse, and new pains and problems have to be dealt with.  It’s also natural for me as a person to have wild swings in emotion from day to day.  But, I see no benefit in feeding the negative feelings and encouraging bad days.  I’m still here warming myself by the wood stove while the cat hunts mice in the basement.  Despite the cold rain, I’m pretty sure I’ll bundle up later today and go outside for a walk in the woods, because the peace and privacy that’s available just outside our door here is irresistible.

Meanwhile, in the next week a horrific number of lives will be cut unexpectedly short due to Covid-19, or car crashes, or a bizarre accident with a ladder and a sex toy.  (as an aside, I mentioned the previous sentence to my wife, and she concurred that it probably will happen due to bored people stuck at home for far too long)  In honor of those lost so suddenly and unexpectedly, I’ll try my best to make the most of each day, even if it involves needles being stuck into my liver, my chemo port, or on a really challenging day, a cystoscope in my penis.

If there are lessons to be learned here, the first is that you never know what tomorrow might bring.  For me, the last two years have been chock full of unexpected tomorrows, both good and bad.  The other lesson is rather Buddhist and flows out of the first lesson: Don’t cling to your expectations, hopes, and fears of what tomorrow will bring.  In practical terms for me personally, I can get very upset when I cling to my dreams of running a marathon or spending time in the woods of Vermont.  I don’t know if I will eventually run another marathon, or even a half marathon.  All I can do is focus on today and do whatever my body allows to stay fit and work towards that goal.  Clinging to fears is equally problematic as I attest to from recent personal experience.  I cried my eyes out thinking I’d never spend another night in Vermont.  Now, not even two weeks later, I woke up in Vermont and realized what an absolute waste of emotional energy that was.

If you ask me what lies ahead in the year 2021, my official answer is “don’t know and don’t care”, and I’m much happier for thinking that way.

Well, This Sucks

The bitter taste of disappointment lingers in my mouth.  It tastes a bit like bad mochaccino mixed with barium.  There is a lump in my stomach.  Certainly this is partly due to the lingering effects of the CT prep drink, but the last couple weeks have been very trying.

Let's quickly go back about two years ago to my initial diagnosis, in October 2018.  I use my Garmin watch to track my runs and walks, and have found that the total mileage I cover tracks very well with how I'm doing overall.  I've probably blogged about this before, but bear with me.  This graph shows my monthly mileage totals in my first year living with cancer:

It starts off very low, because the cancer in my bones was making it difficult to move.  There was immediate improvement after hormone therapy was started, but it leveled off and then dipped in March as the accumulating effects of chemotherapy took their toll.  After that, it was off to the races, quite literally.  Multiple 5Ks and a half marathon were run in the second half of 2019.  I returned to work in July, and still my monthly mileage was increasing.

My wife recently remarked to me that she was initially skeptical of all my treatments.  She knew about the nausea and hair loss and how brutal cancer treatment can be, and wondered why anybody would put themselves through such suffering.  Then she saw me in the second half of 2019 and understood.  I was running more miles and faster than I had in several years.  I was an inspirational story of beating cancer, and the future looked bright indeed.

Now here's the monthly mileage for my second year with cancer.

It starts with a gradual decline as the days got shorter and colder, and also as early symptoms of my next cancer began to build.  It was very discouraging to have to pee every mile, especially when peeing was becoming increasingly painful, and there was a thin layer of snow in the woods that would freeze my feet during my frequent tree watering sessions.  Since my neuroendocrine diagnosis in January, things have been up and down and there's no consistent trend.  July was truly abysmal.  In my previous post I said that I was disappointed with my recovery from chemo this year, and these graphs show why.

This is all background information for recent events.  I'm frustrated with my progress and my social life is stymied by the pandemic.  But I can't stop trying, and made plans to go for a Covid safe walk with a friend who also happens to be an ovarian cancer survivor.  That walk didn't happen because she had to go into the hospital for emergency surgery on the day of our walk.  I wanted to mention this in my previous post but deferred because it seemed inappropriate to bring it up before knowing how things would turn out.

Happily, she's out of the hospital, recovering quickly, and we already have plans to walk again.  However, the day after she got out of the hospital my wife got a call because her aunt had just been found unconscious on the floor of her house and was now in the hospital.

My wife's aunt was 90 years old and had outlived her brother (my father-in-law), her husband, her two sons, and her best friend.  The best friend and a son both being lost within the past year.  She has a sister that's still alive, but they haven't been on speaking terms in decades as part of their feud that's been going on for 8 decades.  The last time we saw them together was at my father-in-law's funeral.  We were hoping they might bury the hatchet, but no, the squabbling continued.

This all means my wife is the sole surviving blood relative on speaking terms with this aunt.  She has been on the phone constantly with the hospital and they were looking to her to make decisions such as whether to put her on a ventilator or not.  She ultimately passed away the day before my CT scan.

And of course, that scan showed that my cancer has already returned.  My June scan had shown a complete resolution of my liver metastases, but now there's new lesions there as well as in my lungs.  But more on that at the moment.  While we're trying to process this my wife was making multiple phone calls dealing with funeral arrangements and trying to figure out if her aunt had a will.  Mostly her goal was to find other people to deal with these issues because she wants to fully focus on me given this recent development.

The day before my scan we did manage to get away to Vermont for a couple hours to check on our place there, and spend some time sitting by the pond.

If I may be so bold, this is a really good picture of me with a backdrop of the pond and peak foliage colors in the hills.  I'm finding more enjoyment in looking at the picture now than the moment in which the picture was taken.  It was a peaceful moment with beautiful surroundings, but I was preoccupied with my upcoming CT scan the next day.  Frankly, I didn't make the most of that moment because I feared a bad scan would make future trips to Vermont more difficult.

I do try to make the most of each day and savor every good moment, but frequently fall short of that ideal.  The best that can be said is that I don't beat myself up about it anymore, because I'm human and a very emotional one at that.

So back to that fateful CT scan.  There's a couple firsts here on my journey.  Up until now, every treatment I've been given has been demonstrably successful.  My response to most treatments has been stunning.  Most patients do respond to chemo, but not everybody sees their liver lesions shrink to the point that they can't be picked up on a scan.

In my reading about cancer, it turns out that the difference between a partial and a complete response to treatment is insignificant.  So while my responses have been dramatically good, in practice that doesn't give me any meaningful advantage over patients that only have a partial response, and my recent experience is sadly consistent with that.  It's the patients that don't get any response to treatment that have meaningfully different and worse outcomes.

Sadly, Atezolizumab is the first treatment I've had where there is no evidence that it's done anything positive for me.  There have definitely been side effects, and large bills to my insurance company, but if it was working I should have had good scans until at least late 2021.

The other first is that this CT scan found the cancer before it produced debilitating symptoms.  I had PSA tests in my 40s, which came back normal, and then within a year I developed blood in my urine and debilitating pain leading up to my diagnosis.  My neuroendocrine cancer was causing increasingly painful urination in late 2019, but my blood work gave no hints that anything was wrong, and a cystoscopy less than a week before my fateful ER visit didn't see the large tumor in my bladder.  In both cases, it was the symptoms that led to diagnosis, and not a routine test.

While I do have multiple lesions in both lungs, the largest of them is about 3mm.  That's tiny, maybe the size of a poppy seed, or perhaps a sesame seed.  Let's just say my lungs are a bit like an everything bagel.  The liver spots are larger, but still generally under half an inch.  I actually have some time to see doctors, get suggestions, and consider my options before the cancer will become symptomatic and life threatening.  This is how routine testing is supposed to work.

My oncologist still hasn't given me an expiration date, and while he does have ideas, he referred me to Dana Farber for their evaluation.  I immediately asked for Dr. Beltran.  A few months ago, when somebody on the forum asked for the best neuroendocrine prostate cancer doctor in the entire country, Dr. Beltran was the answer.  She's also researching the disease and possible new treatments.  If there's a secret weapon in the fight against my cancer, she'll have it.

A positive thought to keep in mind is that I'm generally healthy, my blood counts are only just below normal ranges, and my organs all appear to be functioning well.  When cancer patients need transfusions to keep up their blood counts and are showing signs of organ failure, doctors are very hesitant to use harsh cancer treatments because the treatment would likely kill the patient before the cancer would.

Emotionally, I'm taking all this very hard.  I had plans for the fall that were based on a stable treatment plan.  I'd see my oncologist every three weeks for a check-up and infusion.  The first week after the infusion might be difficult, but the next two weeks I'd be functional enough to get things done and enjoy life.  Now those plans and the treatment plans have been tossed into the shredder.

What lies ahead for me in the near future are many more doctor visits, more tests, and hopefully new treatments with unknown side effects (which is to say, until I know what the treatment is I have no idea what the expected side effects might be).  I was supposed to be spending time in Vermont cutting up firewood for the winter of 2021, not driving into Boston to see new doctors.  It's best described as a horrific loss and I'm going through the grieving process.  Imagine the worst heartbreak you've felt when your dreams were squashed and that's probably pretty close to what I'm feeling.

Back when my treatments were working and I was running over a hundred miles a month, I wondered how I would handle treatment failure and the prospect that there are no good treatment options remaining.  I find myself in that situation right now.  There are a number of treatment options still available, but no "good" ones that are more likely to work than not.  It's the trial and error stage.  Treatments are guaranteed to have side effects, and nobody can really say how likely any of them are to work because the studies haven't been done yet.  One option my oncologist threw out is a colon cancer drug.  It might also work for prostate cancer, but it hasn't been studied and approved for that use.

I am trying to pay very close attention to my thoughts and emotions.  I'm trying to identify them as grief or despair and find the source of the emotion.  In my mind, it's perfectly healthy to grieve for a significant loss, but unhelpful to fall into despair.  I want to be clear about what my goals are, and work with my doctors to find the best way to meet them.  Hope and despair have no place here.  Dispassionate decision making is what I'm after.

After a few meetings with the nurse practitioner at my oncologist's office, I get the impression that I'm pretty good at being my own therapist.  I've told my wife that if I get stuck in a bad place, she should urge me to seek professional help.  So far, I've managed to unstick myself when needed.

So in summary, my situation has gone from bad (metastatic prostate cancer) to worse (neuroendocrine cancer) to nightmarish (the one standard treatment for neuroendocrine cancer has failed).  Make no mistake, I cry about it.  A lot.  But I'm also making appointments with Dana Farber, getting out for walks, and making pandemic friendly social plans.  I can still laugh at YouTube videos.

A lot of people have told me how inspired they have been by my story, and I can't let my audience down by falling into an inconsolable mess of endless crying.  I can't guarantee that I'll fight back the cancer and live for years.  I can guarantee that I will do everything reasonable to fight it.  I'm very excited about meeting with Dr. Beltran.  The thought of taking part in prostate cancer research motivates me.  There's a chance I'll have a wildly successful response to a new treatment.  But even if it fails, I'd be helping to advance the science and that will help men in the future who develop my cancer.  I can't think of a better way to fight cancer than to help people working towards a cure.

23 Month Update

 A Talking Heads song was stuck in my head yesterday, only with the lyrics "psycho kitten, meow meow mao, meow meow mao". This is probably because the cat doesn't like riding in his carrier in the back seat and is voicing his displeasure nonstop for 2 hours.

We were on our way to Vermont to spend the night for the first time since May.  Since the start of my last cycle of chemo in June, I've only felt well enough for an occasional day trip.  I much prefer the air conditioning we have in Massachusetts during the hot summer months. And there was another complication.

Back in July our cat was diagnosed with diabetes. As a result, he needs an insulin shot every night, so we can no longer leave him at home with food and a clean litter box for a few days.  Technically we could, but it would be very bad for him.  So we take him with us, and he's not very happy about it. He's also not very happy about the daily shots or the frequent trips to the vet. Cats just don't exude joy like dogs do.

Of course, one reason the cat is unhappy is he doesn't know what's wrong with him, or why these things are happening to him, and he has no control over the situation.  I can relate. I feel the same way about cancer quite frequently.

On the drive my wife and I discussed the options we had with regards to feline diabetes. We could have euthanized him, and though some people would look down on us for doing so it's a perfectly legal option. I mention it because it is an option and will be relevant later in this post.  We could have also put him up for adoption, or as mentioned above just left him at home and let his blood sugar skyrocket. None of these are great options, so it's a slam dunk to take on the extra burden of traveling with the cat.

As for me, I'm not recovering as fast as I'd like from chemo and radiation. Which is to say, I'm not making the stunning progress I made after chemo last year, where I went back to work full time and ran a half marathon.  Last year set my expectations way too high for this year.

Actually, it's a bit worse than that.  Last fall I had quite reasonable hopes of an extended remission, and was planning to run a full marathon in 2020.  Getting a new diagnosis of a different, even deadlier form of cancer has scarred me. How can I reasonably expect any remission to last after that experience? The thought that my current treatments might still be working in late 2021 feels laughable to me, but it's entirely possible.

Still, at an emotional level I seem convinced that one of my cancers will return before I regain a significant portion of my health and fitness.  This feeling isn’t helped by my recent PSA tests, which have gone from undetectable to a very low but still very detectable 0.02.  It could be nothing, or it could be the start of a trend.  It definitely is a source of anxiety.

One thing that many people have trouble understanding is that even though chemotherapy is done, I’m still on multiple treatments and still am getting an infusion and shots every three weeks.  These infusions usually cause significant fatigue and increased pain for the first week or so.  My mood has been getting very low.  I sometimes wish I were dead.  It’s not a very sensible wish for somebody who’s put so much effort into staying alive, and could very have no detectable cancer in the very near future (there’s reason to believe my PSA may go back to undetectable at the next test).

I’m currently at the very end of my three week cycle, and will have my next infusion tomorrow, and a CT scan a week after that.  It feels like today is the last day of my life, because the infusion will put me out of commission for the next week, and then the CT scan might show something that will lead to more tests and a change in treatment plan.  Or my PSA may have gone up further.  It’s not really the end of my life yet, but it might interfere with future trips to Vermont.

Of course, I have to remind myself that similar to our diabetic cat, there are options, and unlike the cat I’m involved in the decision making process. Wishing for death is similar to euthanizing an animal.  In a way it’s the easiest option because I wouldn’t have to deal with the discomforts and anxiety that accompany life with cancer.  Life with cancer isn’t for wimps.  But maybe there are other options that are better?

I could refuse further treatment.  I’d certainly live longer than if I euthanized myself, and it would improve my quality of life in the short term.  But most likely the cancer would grow right back and I’d be having symptoms instead of side effects in a relatively short amount of time.  That said, I do think the medical and pharmaceutical industry is too focused on survival because it’s easy to measure, and ignores quality of life because that’s so subjective.  It’s something that needs to be talked about more because there are some very expensive cancer drugs that only modestly lengthen life but cause disabling side effects.

Here’s an interesting thought I had this morning:  If I had a CT scan a year ago, around the end of September, it would probably have shown my bladder tumor in a much earlier stage.  I was already starting to get some minor symptoms at that time.  Treatment could have started earlier, and most likely I wouldn’t have needed a stent.  But it would also have derailed my half marathon and stopped my return to work much sooner.  In other words, had I known about my latest cancer sooner, I would have missed out on some of the happiest days of my life.

In my dark moments, I have to remind myself that I've made a conscious decision to play the long game. I've responded very well to treatment so far. My liver was cancer free in my June scan.  I'm hoping between the radiation and immunotherapy my bladder can become cancer free and the stent can be removed.  My oncologist was flexible with the scheduling of the scan, and I specifically chose this time because it’s right before my next urology appointment.  The scan results might directly influence the decision of whether to remove the stent, or replace it with a fresh one.  Not only does having a stent suck, but it requires periodic replacement and that’s a minor surgical procedure involving anesthesia.  I’m enduring these treatments to have the best chance of losing the stent, and if they lengthen my life, that’s a bonus.

So back to Vermont.  Yesterday my wife and I were moving firewood around the property. My father in law built a number of wood sheds up here, so we cut firewood to fill them up and let it season, then load the wood into the pickup to transport it to the shed next to the house. It's a lot of physical labor but we enjoy it.  There's something very primal and satisfying about going into the woods and harvesting trees to keep warm during the cold months.

Some of the wood we brought down was large and needed to be split. I got out my maul and hammered away at the knot free pieces. Again, there's something very primal about swinging an 8 pound maul and splitting a log in one hit. It's a great upper body workout. I wonder how many cancer patients are doing this?

For the knottier pieces, I’ll get out the chainsaw and cut the log lengthwise partway, then put a splitting wedge in the slot cut by the saw, whack the wedge a few times, and the pice will usually split apart, especially if I cut through the knotty section with the saw.

Of course, when I got the saw out and filled it up with gas and bar oil, the cap for the oil tank broke rendering the saw useless.  Great.  I’ve got treatments and tests in the coming weeks and I really don’t need the bother of tracking down a replacement cap.  Such little annoyances of life become magnified when you only have a few precious hours in a day when you can function.  But happily I had another saw available, so this little hassle can wait for a bit.

This is all very physical work, and I was greatly enjoying it for a while.  But then I started feeling a bit dizzy and had to take a break.  Later on it felt as if my body just shut off, and I went into the house to lay on the couch and wrote part of this draft on my cell phone.  I do spend a lot time laying on the couch or sleeping in bed, because that’s when my stent is the most comfortable.

In total, I probably spent about 90 minutes yesterday doing physical labor.  That’s a vast improvement over earlier this year, but a far cry from what I used to be capable of.  I’m not feeling as enthusiastic about physical labor this morning.  I’m back on the couch rewriting this post, again, on my laptop while my wife is outside splitting firewood with a wedge.  I can hear the hammering.  She doesn’t have the strength or desire to swing the maul, but makes up for it with persistence.

There’s something about our property in Vermont that encourages being active.  It was cold last night and I lit a fire in the wood stove to take the chill off, and again this morning.  It’s something that gets me off the couch for a few moments, and requires brief bouts of activity to bring firewood in from outside.  We don’t have any TV up here, and the accommodations are rather modest and frankly not as comfortable as our home in Massachusetts.  It all adds up to making it even easier to get outside and get active.

Even our diabetic cat is more active.  While we’ve been away the mice have taken over the place.  We knew our cat liked chasing and killing birds when he lived with my father in law (one reason we have kept him indoors since we adopted him), but didn’t know he was also interested in mice.  He spent hours in the basement last evening chasing them around, which we’re very happy about because mice that are running from the cat aren’t procreating or finding places to hide seed.  To me, it’s a better pest control method than using traps and poison.

I also told the cat numerous times that mice are a high protein, low carb snack ideally suited to a cat with diabetes.  Another amusing anecdote: we use a wheat based, biodegradable kitty litter.  We noticed not long ago that the litter box that we had left up here was completely devoid of litter, but had a fair number of mouse droppings.  It seems we’ve been feeding the mice, and they don’t even mind that the litter was used (I left some used litter in the basement hoping the smell would deter the mice, but they ate it!)  It’s entirely possible that at some point in time the cat will go to use the litter box and end up pooping on the head of a mouse trying to get a snack.

I’m feeling good at the moment, but we’ll be travelling back to Massachusetts later today so I can get my treatment tomorrow.  It’s almost certain that in the days afterwards I’ll be feeling more fatigued with increased pain, and I’ll be feeling very distraught that I’m not well enough to be outside running or harvesting firewood.  I’ll also be very anxious about my upcoming tests.

Here’s what you can do to help: Reach out to me!  Send me a message or we can even try a video chat on Facebook.  Tell me a joke and make me laugh.  Prayers are great, but laughter is truly the best medicine, IMHO.  You can even tell me about the stupid little problems in your life that aren’t nearly as bad as having cancer, because it will distract me.

The Oil Change

 I've been suffering a fair amount of cognitive dissonance about my state of health. At one extreme, my deepest, darkest fears come from the knowledge that one of my cancers is of a type that can spread to the brain.  This is one reason why apparently healthy cancer patients can suddenly become very ill and die with little warning.  Such fears are only fueled when the hot and humid weather triggers a migraine.

At the other extreme, newer treatments such as immunotherapy (which I’m on) can produce lasting remissions that would have been considered miraculous not long ago.  It’s not unrealistic to hope that the cancer could disappear from my scans and stay that way for years, perhaps decades.

I been discussing these thoughts with the nurse practitioner at my oncology appointments.  We seem to be in agreement that the best strategy is to include a brain MRI as part of my routine scans, and otherwise hope for the long lasting remission.  My worst fears aren’t to be ignored entirely, but we take the precautions we can and then move one.  It truly is preparing for the worst while hoping for the best.

My ability to do things other than sit on the couch is the other source of cognitive dissonance.  This is where the oil change come in.  One of the odder parts of the cancer experience for me is having a “can do” attitude while saying “can’t do” to the people who administer my long term disability policy.

Let’s look at a concrete example.  Last week my “can do” attitude led me to perform a long overdue oil change on my Mustang.  This is a car I custom ordered from Ford back in 1997, and other than the very first oil change I've done every single one for 144k miles and 23 years.  A part of me would die if this car went to Jiffy Lube.

This particular oil change actually started back in March, when I bought several bottles of oil and filters for the various cars in the family fleet.  I managed to complete a couple of those oil changes during the earlier chemo cycles before the accumulating side effects and hot weather put me on full time couch duty.

It took until a cool morning in August before I felt fit enough to attempt the last one.  It also took a strategy of dividing the job down into teeny tiny tasks that I could complete with breaks in between.  Pull the drain plug and rest while the oil drained.  Change the filter and rest.  Refill with new oil and rest.  Have lunch before starting the engine and checking for leaks.  What normally would take me about 30 minutes stretched out to about 4 hours.  It was my one and only major accomplishment for the day.

If I was a professional auto mechanic I’d be fired.  The expectation would be for multiple oil changes in an hour, for multiple hours in a day.  And this is why I’m on disability leave.  It’s not that I can’t do anything, but that I am very far away from being able to meet the expectations for quality and quantity of work produced by a principal software engineer.

This was a topic of another conversation with the nurse practitioner.  She strongly warned me against expecting to be able to do things as fast or for as long as I used to.  I suggested that with some significant improvement in my energy levels, I’d like to get to the point where what I normally would accomplish in a weekend might be done over the course of a 7 day week, and she agreed that sounded realistic.

This is uncharted territory for me.  I’ve worked in software for three decades, and I’m used to doing everything with some form of schedule and deadlines to be met.  Somehow, when I was on disability leave in 2019 I managed to set a personal deadline of July for returning to work, and met that.  I set goals of running a 30 minute 5K and completing a half marathon and met those.  It was an odd and wonderful time in my life where even aggressive goals seemed easy to reach.

Of course at the time I was only battling one incurable cancer, and if the treatments I was on (and still am on) failed there were other treatments available to continue the fight.  With my latest diagnosis I’m now fighting two incurable cancers with ongoing treatments for both.  If the neuroendocrine cancer comes back, there are no great options to continue the fight at this time.  To make things absurd, I’m also doing this during a pandemic.

I tried repeating the magic of 2019.  Back in May I proclaimed in this blog that my stent would be removed in June, that I wouldn’t need radiation, and that I could start ramping up my “running” distance and pace.  I failed on all three counts, and now remember fondly how healthy and fit I was in May after five cycles of chemo.

It’s led me to the point where I’m ditching specific goals and schedules and truly learning to live one day at a time.  My focus is almost entirely on regaining my health and fitness.  How much I will regain and how long that will take is entirely unknown and I’m learning not to care.  Or more specifically, learning not to be disappointed when it takes longer than expected to get back less fitness than I was hoping for.

What really matters is that I’m still in the game of life, that all those harsh treatments appear to be working, and I’m seeing hints of improvements in my health.  Today I’m taking advantage of the cooler weather to bring our trash and a bottle of used motor oil to the town dump.  Cutting and splitting some firewood is on the to-do list for the fall but I’m not sure exactly when that will happen or how much wood I’ll produce, and it really doesn’t matter.

One final thought: I could focus on the dramatic changes and losses that have happened in 2020, and the virtual Sword of Damocles hanging over my head, and be very sad.  Or, I could focus on the moment, and enjoy being in my fifties and experiencing an increase in my health and fitness while largely getting a break from deadlines and commitments.  In the moments when I’m able to choose the latter, I feel much like a kid on summer break from school.

Latest CT Scan and Impending Radiation

Humans are a curious bunch, and I suppose I have to include myself as a part of that bunch.  My most recent CT scan clearly shows cancer and extensive cancer-caused bone damage.  The reaction was much rejoicing, which is best explained by comparing the current scan to earlier scans.  It seems human emotions are driven by whether the cancer is increasing or decreasing more than the absolute amount of cancer.  Very curious indeed.  Suffice to say for now the scan showed less cancer than the previous scan.  Hooray, let’s party!

Allow me to go on a couple detours before getting into a few particulars of the scan.  First, let me say that many of these curious humans don’t understand the need to wear masks during a pandemic.  These people simply don’t trust the people who have made a career out of studying pandemics and the spread of infectious diseases.

Of course, being a curious human myself and a proactive patient involved in the decision making process, I’ve recently questioned the need for a urinary stent.  A couple weeks ago I practically begged my urologist to simply remove mine instead of replacing it with a fresh one.  That stent is very uncomfortable and interfering with my ability to run, which trumps your decades of experience as a urologist treating urinary cancers.  Next time maybe I’ll find another urologist who listens to me.  This is of course, foreshadowing that it’s probably a very good idea that I still have a stent.

The second detour involves my previous blog post, where I lamented the possible need for radiation, and how radiating my prostate probably would cause side effects that would affect my quality of life, but provide only modest improvement in survival or duration of a remission.  After writing said post, I proceeded to rant to my wife about radiation for some time.  During this rant it was conceded that radiation could be very useful if there was a single or perhaps a very small number of problematic spots.

Okay, let’s talk about that CT scan, and let’s get the bones out of the way first or I’ll go on about those for pages.  The good news is that there’s been no change in the appearance of my bones since the previous scan.  But of course, I’m supposed to be beating cancer, shouldn’t those bones be improving?   My MO (medical oncologist) says bones aren’t like soft tissue.  The cancer can be gone completely, but the bones will maintain their cancer altered appearance on a CT scan.  We’ve had this discussion several times.  You could say it’s been a bone of contention between us.  You would say it if you liked puns.  And I did.

The best news is that my liver is now fully clear of any visible cancer.  It’s highly likely that there’s still some microscopic bits remaining that are smaller than the CT scan can see, but with any luck my immune system will go after those with the help of the immunotherapy drug I’ll be continuing indefinitely.

And now the “bad” news.  My bladder still has cancer in it, though it has shrunk slightly from the previous scan, and greatly from the original scan in January.  Here’s a side by side comparison of January vs June, but I’m not sure how well it will show up in the blog.  You can click on the image to get a larger view.

The image on the right is from June, and prominently shows that damn stent, which I occasionally refer to as the Krazy Straw, or more recently, the Devil’s Straw.  The stent is basically pointing to the bit of remaining cancer on the lower left portion of my bladder.  Let me explain a CT scan briefly: It creates a series of images of what you would see if you sliced my body in half to get a cross sectional view.  Each slice is about 1.5 mm apart, so if it weren't for CT scan technology you'd have to turn me into thinly sliced deli meat to get the same series of images, and I'd probably not survive that process.

Anyhow, the images above are just a single "slice".  If you look at other images from the series, you'd see that the stent in fact goes right through the tumor like a banana through a bagel (wording inspired by the B-52s video for “Roam”).  So, um, I suppose the urologist knew what he was doing when he put in a fresh stent.  Maybe?

The image on the left is from January, and it may be difficult to see as there’s not much contrast between the tumor and the inside of the bladder, but there's a lighter grey area that is the tumor occupying approximately a third of the bladder.  It looks absolutely huge compared to the image on the right.  That image was taken when I went to the ER in extreme pain because my right kidney was swollen with urine that couldn't make it into the bladder, also known as hydronephrosis.

After looking at my latest scan, my MO and I discussed radiation for all of about five seconds.  The conversation basically went like this:

    MO: “Let’s zap it”
    Me: “Okay”

This quick exchange is directly traceable to my previous blog post and the subsequent conversation with my wife.  It seems that anxiety in this case served a purpose.  I was obsessively thinking about radiation, but as part of that process was thinking about several possible results that could be shown in the scans.

One of those possible results would be a solitary remaining tumor in the bladder.  In such a case, it would make sense to use radiation in the hopes of potentially eliminating all cancer that could be seen in a CT scan, and reaching NED status (No Evidence of Disease).

And as luck would have it, that very possibility turned out to be the actual result of the scan, and I had a pre-thought out decision ready to go.  Emotionally, I went from being a victim of cancer to a warrior with a mission to eradicate cancer in a heartbeat.  The moral of the story is that there is a happy medium between excessive worry and sticking one’s head in the sand when it comes to intrusive thoughts caused by scanxiety.

But this is supposed to be neuroendocrine cancer of the prostate, and we’re talking about the bladder.  What about the prostate?  The CT scan summary didn’t even mention the prostate.  I asked my MO and he said there was nothing there.  Interesting, and to the RO (Radiation Oncologist) I went.

The meeting with the RO provided further intrigue.  He confirmed there was nothing to be seen in the prostate, and said that when speaking with the MO on the phone, the MO wasn’t absolutely sure if this cancer originated in the prostate or the bladder.  I suppose it doesn’t really matter.  Neuroendocrine cancer is pretty much the same wherever it starts in the body.  Small cell lung cancer is a form of neuroendocrine cancer and my entire treatment has bee based on the latest and greatest small cell lung cancer treatments and I’ve been responding very well to treatment so far.

Getting back to the RO, he is not a doctor who instills false hope.  He gave no guarantees of a cure, but said radiation to the bladder could buy me some time.  He also made no promises about being able to remove the stent.  Even if radiation gets rid of the tumor, scar tissue could be a problem.  So in the context of such brutal honesty, when he said that I had a very good response to chemo, that really meant something.

He offered to throw some radiation at the prostate if I wanted it, but given my good urinary function and lack of any visible cancer in the prostate, we chose not to.  Why mess up something that’s working okay now.  Besides, not radiation the prostate also means less chance of collateral damage to the rectum (yikes!).

A couple days after the meeting with the RO I went back for a “simulation”, which is basically a couple of scans for planning purposes, and also involves tattooing reference marks onto the body.  The sexier way to describe my day was “I drove my muscle car to Framingham to get a new tattoo.”  While true, my generation of Mustang isn’t particularly muscular and this tattoo isn’t particularly artful or visible.

They are able to reuse some of the tattoos from my previous radiation, but since this treatment is occurring at the very bottom of the abdomen they needed some alignment spots lower down. Very very far down.  If one of them were any lower it would be on my genitals.  Let me put it this way: I wasn’t joking when I told the nurse that her job was made easier because chemo had also eliminated my pubic hair, though she thought it was funny.  It’s a very sensitive area, and hurt like heck.

So back to that detour about masks and stents.  As I said, that stent is going directly through the remaining tumor.  Radiation is likely to cause all sorts of effects from swelling to formation of scar tissue that could close off the ureter if it weren’t for the stent.  Wow, my highly experienced urologist was right to put in a new stent and I was wrong.  Imagine that.  Perhaps when it comes to stents and wearing masks we should put some trust in the professionals who have made it their life’s work to know about these things?

In the end, I expect to be stuck with a stent (where stuck has multiple meanings) for quite some time to come.  I’m thinking likely for the remainder of 2020.  But in the long term I am hoping to reach NED (though no doctor has promised anything like that), and someday we can try removing that stent and seeing what happens.  For now, there’s too many complications that could happen with radiation without a stent.  I’m even optimistic enough to think that any scar tissue would form around the stent and leave a hole for urine to flow through in the future when the stent is removed.

As a footnote to this post, careful readers may have noticed I refer to “my” MO and “the” RO.  The RO is highly recommended by my MO and my urologist, but he does lack in people skills and I haven’t yet embraced him as my personal choice for radiation treatment, though he also treated me back in 2018.  I do trust him because he has been recommended by other doctors who I’ve come to trust (usually because in the end they’re right and I’m wrong whenever there’s a disagreement about treatment).

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!