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!

A Day in the Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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