To the Edge and Back

 It's been a while since I posted. Last time it was about the 5K I "ran" on Thanksgiving.  Since then, things have gone off the rails, and it's not an exaggeration to say treatment almost killed me. I’ve had a glimpse into the abyss of impending death, and with the help of my medical team have managed to claw my way back to the land of the living.  I tell the story of my experience because many a cancer patient has not come back to be able to tell their story.

Let’s start with running, or rather, the lack of any running or any regular exercise.  Anemia made me too weak for that. Now that my red blood cell counts are recovering, I'm too weak from treatment and atrophy due to lack of exercise. I haven't given up trying, but haven't yet attained the critical mass where I'd say I'm exercising regularly.

I became anemic because of side effects from Cabazitaxel and Neulasta.  My red blood cell and platelet counts plummeted.  My liver enzymes skyrocketed.  My cancer grew unchecked and a mid December scan showed about half my liver was occupied by cancer.  This is what could be called a precarious predicament.

Chemotherapy is poisonous to all cells in the body.  It’s only given if blood tests show that it’s safe to do so.  A compromised liver and/or kidneys are a problem because most cancer drugs are metabolized by the liver and excreted by the kidneys.  If these organs aren’t working, the poisonous chemo will stay in the body far longer than intended, and do far more collateral damage.  Chemo stops the marrow from making blood cells.  If platelets start out low, and drop further, it can cause uncontrolled bleeding.  If platelet counts reach the single digits, it’s possible for brain hemorrhages to spontaneously happen.  Giving chemo when the body is weakened can kill the patient far faster than the cancer.

My platelets had dropped as low as 64 from the mid 100s over the course of about a month.  It was an ominous steady decline, and not the brief drop and partial recovery that normally happens over the course of a chemo cycle.  The nurse practitioner said if I was below 50 they’d delay treatment until the counts recovered.  Below 20 they’d give a platelet transfusion.  They would not give a transfusion to get me above 50 so I could withstand treatment.  These are the sorts of conversations I’ve been having with my medical team.

One of the more common “died from cancer” stories goes like this:  Patient receives a cancer treatment.  Subsequent blood tests show it is unsafe to continue treatment, so they wait another week and do another blood test.  This blood test shows things are continuing to worsen.  The patient never receives another treatment, enters hospice, and dies a few weeks later.

This was very much in my mind when we switched to a different chemotherapy cocktail.  If my platelets continued dropping at the rate they had been, I’d be well into the “no treatment” zone well before the second cycle.  Simply put, several of my blood tests needed to reverse course soon or I’d be another cancer casualty with surprising swiftness.

But I hear you thinking that I just walked a 5K at the end of November!  How could I possibly go from that to passing away in about two months?!?  Very simply: I was going downhill fast due to a double whammy of spreading cancer and accumulating side effects of treatment.  It was a race of sorts.  The chemo wasn’t killing the cancer but it was killing me.  The question was would it kill me before the cancer?

My strength faded with my blood counts.  My pain levels increased until I was taking 30 mg of oxycodone a day.  That’s not a lot by cancer patient standards, but as the phlebotomist put it, I’d be in some significant pain without it.  He was quite right.  On the ride home from Dana Farber my pain meds were wearing off and I didn’t have another dose with me.  Each bump in the road jiggled my cancer and chemo damaged innards, and I’d wince in pain.  Have I mentioned that Boston roads in the winter have a few bumps?

One morning I woke up in significant pain.  I had to ask my wife to go downstairs and get my pills for pain and nausea.  An hour or so later, after they took effect, I was able to put on clothes and go downstairs.  After that night, I started leaving some pills and a bottle of water at my bedside so I could medicate myself accordingly if symptoms and side effects were interfering with my sleep.

I started asking my wife to bring me a lot of things.  Food, pills, the heating pad, a bucket in case I threw up, a cool facecloth for the back of my neck to help with nausea.  On my bad days I had to save all my energy for trips to the bathroom.  Walking from the couch to the toilet and back was an exhausting exercise.  I literally was avoiding trips to the kitchen to get things for myself because then I might not have the energy to get myself to the toilet when needed.

Allow me to point out how truly scary this is.  What would it be like if things got even worse?  Could I get to the toilet with walker?  Or would I need a commode that could come to me?  I made a Facebook post during this time about being happy to still be able to wipe my own ass.  I’m sure people thought I was exaggerating, but I assure you I was not.  Any further loss of strength and it would be time to arrange for people to come to the house to help me bath and put on clothes, etc.

I watched my father-in-law die of cancer, and have heard numerous other stories online.  Things can go to shit in an awfully fast hurry.  I honestly believed that if my new chemo didn’t work, I was on a path to start hospice in early January and be dead a few weeks later.  I felt awful that my wife would have to spend Valentine’s day and her birthday without me.

On the Monday before Christmas, with my platelets at 64 and my hemoglobin in the single digits, I received my first infusion of folfiri.  Like all chemotherapies, the first week was quite rough.  I effectively slept all day on both Christmas eve and Christmas day, only getting out of bed to go to the bathroom, eat something, or take pills.

At my follow-up appointment the following Monday, I got the best Christmas present ever.  I was feeling a bit better, and my blood tests all showed improvement.  I would be healthy enough to receive further treatment.  In a way, I am calling more chemo the best Christmas present ever, which is a bit masochistic I suppose.

This should not be interpreted as “I’m cured”.  Far from it.  The best I can say is that there are paths for me to get back to being healthy and active, and that those paths likely involve finding a clinical trial for a non-chemo treatment.  For now, it’s best to say I’m not in imminent danger of death.  My ass has been pulled out of the fire is how I have described it.  My wife will likely have to tolerate my presence on Valentine’s Day.

What lies ahead for me?  More folfiri, and then a scan probably around early February to assess how well it’s working.  Folfiri is given every two weeks, and it’s looking like the first 9 days are pretty difficult due to side effects and fatigue.  That gives me about 5 days every two weeks to live my life, and these aren’t 5 full days mind you.  They’re 5 days where I get a few hours of feeling reasonably well and able to do stuff.  So, as a rough guesstimate, I get about 20 hours to actually live every two weeks.

It’s a bit stressful trying to “seize the day” when you have so little time to do so.  I’m also never quite sure when those 20 hours will occur.  I’m more likely to have a bad day when the weather is bad or cold.  Warm sunny days make me feel a lot better.

In a future post I’d like to go into some detail of my genetic test results, but for now suffice to say I didn’t have any mutations that would match me up with one of those fancy new treatments you see on TV that produce spectacular results for some patients.  In fact, the genetic test said the atezolizumab I had been on previously was unlikely to work for me.  That’s a lot of additional side effects I went through, not to mention the exorbitant price paid by my insurance company, for no real benefit.

At my last appointment, I asked if it was possible I could get a great response from folfiri, hoping that yes, they’ve had several patients that have had much better and longer lasting responses to a treatment (not necessarily folfiri) than they expected.  The response was a little more nuanced than I hoped for.  My cancer is wide spread and very aggressive.  These cancers do tend to respond well to treatment, but they also tend to come back after a brief remission.  Most likely, my future will involve being on and off of various chemos as I bounce between remissions and recurrences.

On and off of chemo for life.  Oh joy.  Oh bliss.  Oh rapture.  Not!

At this point, I am so utterly sick of chemo.  I was really hoping there was a decent chance of getting a year or more of remission, but those hopes have been tempered.  I’m really hoping to find a clinical trial for something besides chemo so my bone marrow can get some time off from the near constant assault it’s had for the past year.  But I don’t know what that clinical trial will be, only that Dana Farber has two trials opening up around springtime that might be a fit for me.

As I regain my strength, it’s something I can spend part of my time investigating, but do I want to spend my 20 hours every two weeks looking for ways to stay alive?  Or do I want to spend those 20 hours living life to the best of my abilities?  It’s a conundrum.

Clinical trials are no easy path.  I’ve already been warned that one would require a hospital stay of about a week for each treatment, to guard against the possibility of a cytokine storm where the immune system overreacts in a manner that could be fatal.  That might be worth it if it could give me a long term remission.  If we’re talking about adding only a month or two of survival, I’d rather spend my remaining days in Vermont than a hospital.

There’s other treatments I’ve heard of that I wouldn’t consider even if I did qualify for them.  There’s a treatment called Lu-177 that’s experimental in the US but already approved in other countries such as Germany.  Many patients fly to Germany for each treatment, then fly back home between treatments.

Lu-177 is a radioactive treatment.  For the first several hours you’re isolated in a room alone, as you’re too radioactive to be around people.  When you leave the facility, you’re suppose to ride in the back seat of the car on the opposite side from the driver, so as to limit radiation exposure to the driver.  This treatment has all the usual cancer treatment side effects, particularly in the digestive system.  I heard of one person who got severe vomiting or diarrhea (I forget which) on the flight back home.  I don’t like air travel normally, I don’ want major digestive distress halfway across the Atlantic.

I am increasingly questioning how much treatment I want to endure.  It’s a tricky issue.  In theory, treatment prolongs life but reduces quality of life.  Of course, that hasn’t been my experience.  My carboplatin cocktail eliminated painful urination after the first treatment, and certainly extended my life.  On the other hand, cabazitaxel almost killed me and gave me horrific quality of life.  So for, folfiri is looking like a potential win-win, though it’s hard to tell if it’s killing cancer, or my body is just recovering from the cabazitaxel damage.

I’m really learning to take things one day at a time.  I’m back to driving myself to follow-up appointments.  I go and get things for myself from the kitchen.  I positively bounce up and down the stairs.  I’ve tried a couple walks with mixed results.  At the moment, running an errand is enough to tire me out, and exercising on top of that can put me out of commission for more than a day.

At my last appointment it was suggested that a mile walk might be too much for me, and perhaps I should start out with a shorter walk.  About 15 months ago I ran a half marathon, and now 10% of that distance is too much?  That’s very difficult for me to wrap my head around.  But I’m hoping that by early February the scan will bring good news and I’ll be back to walking regularly, although the distances may be shorter and speeds slower than I ever imagined.

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.