Day 860: Update, Chemo, and Genetics

 Since my diagnosis, I’ve become an active member in several online cancer forums.  My stock advice to those suffering a recurrence is that you only need one treatment to work really well.  That advice always felt a bit hollow, because early in my journey it seemed every treatment worked really well for me, and I was living a mostly normal life.  2020 was a rough year for me, with difficult side effects and treatments that either didn’t work for long, or didn’t work at all.  If only I had taken my own advice.

Things seemed pretty grim when I started on a new (to me) treatment, folfiri, which is actually a decades old chemotherapy commonly used for colon cancer.  So far 2021 is turning out much better, with a CT scan showing fewer and smaller tumors, improving blood numbers (including that pesky chromogranin-A test which was the lone voice of dissent previously), and me feeling more optimistic than I have in quite some time.  And all it took was finding that one treatment that so far seems to be working really well.

I find it amusing because there’s commercials all over TV for the latest cancer drugs and how patients are living longer and better lives because of them.  While these drugs do produce miraculous results for a minority of patients, they are not without their own side effects.  I was on one of these drugs in 2020, and it gave me side effects and did nothing obvious to slow down my cancer.  I’ve heard similar stories from other patients, where it didn’t give them any meaningful remission from the cancer, but oh yeah, it did cause their own immune system to kill their thyroid gland.  Yes, plural, because it’s happened to at least two people.

So here I am, on some old chemo drug being used off label and getting the kind of results they promise in the TV commercials.  At least so far.  I’m no longer cocky enough to assume this will last for years, though it would be very good for me if it did, and that is certainly a possibility.  But the saying goes “make hay while the sun shines”, and the sun is coming out from behind the clouds for me now.

There are no plans to stop this chemo after a fixed number of cycles.  I’ll be receiving it as long as it’s working and my body is tolerating the side effects.  As suggested above this could go on for years.  It requires a mind shift.  I can no longer think in terms of simply surviving chemo and then starting to live life again when it’s over.  Now I have to learn to live life during chemo.  This includes everything from going for walks in the woods to paying bills and fixing broken appliances.  I’ve always been good at the walk in the woods bit, it’s the tasks that are more drudgery that are the challenge. I wasn’t good at keeping up with them before cancer.

Shifting to another topic, a ton of thanks go to my wife for all she’s done to support me through this whole ordeal.  When we were married, we took a vow to stick together “in sickness and in health”, but certainly my 20-something year old self never imagined “sickness” as recurrent metastatic neuroendocrine cancer during a pandemic.  As of today I’ve been fighting cancer for 860 days.  Just a few decades ago, I’d either be cured or dead by now.

Because of the pandemic, my wife can no longer keep me company in the infusion room.  She either takes a drive back home and then returns to pick me up, making for a very long day of driving, or waits in the parking lot for hours and hours coming inside only to use the bathroom. While she’s waiting alone in the car, I’m chatting with the nurses and other patients and it generally feels like a party atmosphere by pandemic standards.

To go off on an automotive tangent, our Toyota Prius is turning out to be an ideal car for such situations.  It’s a hybrid with automatic climate control.  Simply leave the car “on” and set the heat to 70 degrees or so, and the car will figure out when to run the engine and how fast to spin the blower fan to keep the interior comfy.  It’s stunningly efficient at doing this on a moderately cold day.  In the six hours it takes to drive to the oncology office, wait for my infusion, then drive home we averaged over 40 mpg including the time waiting in the parking lot.  That works out to a little over 2 gallons of gas burned over six hours and almost a hundred miles of driving.  Our next most efficient car would burn a little over 3 gallons just driving there and back without any idling for heat.

My wife has also been doing most of the chores around the house and preparing most meals (I usually get my own breakfast, as toasting bagels and pouring cereal are within my abilities), and the menu is constantly changing as I go on and off of chemo and the foods I tolerate are different with each chemo.  Things should get more predictable with the plan to stay on my current chemo indefinitely.  I think she’s quite pleased that pepperoni pizza is not only tolerated by my digestive system, but being a calorie dense food helps me maintain my weight, and in the warped world of cancer could be considered a health food.

In all honesty, the nurse practitioner told me to avoid salads unless I drench them in dressing.  It’s all about calorie density and maintaining my weight right now.  A body that’s losing weight doesn’t heal from chemo and recover blood counts as well.  Pizza, ice cream, chili with real beef.  It’s a poke in the eye to anybody who says they beat their cancer with a vegan diet.  Usually when pressed such people admit they had their single tumor surgically removed, and then declined chemo to mop up any microscopic bits that may or may not have have been in their bodies.

Finally, let’s talk about genetics, or more specifically the genetics of my cancer.  Last fall I had a biopsy which was genetically tested at Dana Farber.  I’ve since found out that this was an experimental test, so if you want to get the same one I couldn’t say what you should ask for.  In addition to showing mutated genes, it also showed which genes that had “copy number variants”.

A quick bit of biology: Humans have 23 pairs of chromosomes.  Chromosomes are made up of genes, and as a result genes usually come in pairs as well.  There are several hundred genes that can be associated with cancer, and many fall into one of two categories.  Promoter genes are genes that promote cell growth and division.  Suppressor genes oppose the promoter genes and stop cell growth.  These genes are analogous to the gas and brake pedals in a car (credit for that analogy goes to “The Emperor of All Maladies”)

The balance between promoter and suppressor genes is important. It’s what allows our bodies to grow as children, and then maintain a stable size as adults.  When there is injury, a period of increased growth is needed for repair, followed by only enough growth to replace cells that are lost due to various causes.

When you look at my genetic report, I have very few actual mutations.  It turns out that 98% of cancers have more mutations than mine.  What I do have is a lot of is those copy number variants, which means I have the wrong number of certain genes.  My amateur explanation for this is that there is something very wrong in my cancer’s ability to repair breaks in chromosomes, and in the process of fixing those breaks it either loses genes or inserts extra copies.  And the general trend is that my cancer has extra copies of promoter genes and fewer copies of suppressor genes.  In several cases suppressor genes are missing entirely.  My cancer has a very large gas pedal while the brakes are either broken or missing entirely.

This probably explains why my cancer grows so fast, and really doesn’t care a whit about what I eat.  If you think about terminal cancer patients, they have usually lost their appetite and are losing weight until they become skeletal, yet their cancer continues to increase in size.  Think about that the next time somebody proposes that you can starve cancer with diet.  It might work for some low grade cancers, but not widely spread metastatic cancers.  Yes, I really do have an issue with people peddling diet as a cure for all cancers.

Let’s talk about some specific genes.  PTEN is a frequently mutated gene in prostate cancer, affecting an estimated 70% of patients at diagnosis.  In my case, one copy of PTEN is mutated, and the other is missing entirely.  PTEN is a suppressor gene, and is also thought to be involved in making cells stick together.

Looking at other suppressor genes, I’ve lost both copies of ARID1B, RB1, and TP53.  TP53 is important and we’ll get back to that in a moment.  These are all genes that can stop cell growth and division, and they’re missing entirely from my cancer.

Cancer is a disease of damaged genetics.  My cancer cells no longer require any external signal to grow, they just grow because they have extra copies of growth genes and lost the genes that can stop growth.  Neuroendocrine is a small cell cancer, and the cells are small because they just keep dividing and don’t have any time to grow between divisions.

If it isn’t obvious, I’ve been spending time looking up genes in my genetic report online, and trying to form a mental model of how my cancer behaves as a result of these mutations.  It’s being an amateur geneticist at it’s worse, because my genetic report only says which genes are mutated or have copy number variants.  It doesn’t say which genes are active or inactive, and it ignores that it usually requires a sequence of genes to carry out a cellular process.  As an example, I have an extra copy of a gene associated with ovarian development.  That’s probably important in ovarian cancer, but most likely the gene is inactive in prostate cancer.

But when patterns emerge that match the behavior of my cancer, it’s a reasonable theory that there is some cause and effect.  For example, I’ve noticed I’ve lost several copies of genes that are involved in cellular adhesion, which is basically cells sticking to each other.  This is necessary for cells to form organs or tumors.  It’s not helpful to have liver cells breaking off and floating around the body, but that’s exactly what my cancer is doing.  Some cancer patients have a single tumor the size of a brick.  That isn’t how my cancer behaves.  Instead it forms many small to moderate sized tumors scattered throughout my body, and I see evidence for that in my cancer’s genetics.  It was probably that way from very early on, as my prostate cancer had invaded countless bones before reaching the left side of my prostate.

It’s somewhat unfortunate, because when cancer cells stick together and remain in one place, they become good targets for radiation and surgery.  My cancer is systemic, and generally can’t be treated with radiation and surgery because there’s countless tumors to be treated.  I’d either die from radiation poisoning, or end up as a jelly fish because most of my bones would be removed from my torso.

But let’s get back to that TP53 gene and chemo (http://www.bioinformatics.org/p53/introduction.html).  TP53 has a very specific function: after DNA has been duplicated, it stops the process of division until any errors in DNA duplication have been fixed.  My healthy cells presumably have both copies of TP53 intact.  When chemo damages the DNA of healthy cells, TP53 steps in and stops cellular division until the damage is repaired, or will kill the cell if damage cannot be repaired.  As a result, growth of healthy cells is slowed, but they repair themselves and proceed to make more healthy cells.

But this is not the case in my cancer cells.  The quality control department that is TP53 has been laid off.  Cellular division proceeds regardless of the state of DNA, and most DNA damage is likely to be fatal to the cell as genes for important cellular processes are changed to gibberish.  About 50% of cancers involve mutations or loss of TP53, and that puts the cancer cells at a disadvantage to healthy cells when treatment is intended to damage DNA (radiation and some chemotherapies).

And this is potentially why a decades old colon cancer treatment is so effective against my cancer.  It works in part by damaging DNA.  So does carboplatin, and that was effective as well.  A few decades ago, when a bunch of new chemotherapy drugs were in development, I could very well have been the guy you read about in the newspaper who was about to die from cancer, but then had a miraculous recovery due to the latest in cancer treatments.

All the hype today is in the fields of immunotherapies and precision medicines.  This is generally good but it does imply chemotherapy is outdated, difficult, and useless.  My experience is the exact opposite.  The shiny new drug didn’t work for me, but decades old chemos did.  More importantly, it’s working after my cancer grew back following platinum chemotherapy, which seems to be considered the best standard treatment for neuroendocrine cancer.  When that doesn’t work or stops working, there is not a long list of second line treatments proven to work.

What all existing cancer treatment have in common is that none of them work by fixing the genetic damage at the heart of cancer.  But what if you could do that?  Viruses work by injecting DNA or RNA into a cell, and turn that cell into a factory for making more viruses.  What if a virus could be engineered to inject the missing TP53 gene back into my cancer cells?

That’s exactly what scientists tried according to the link above.  This is what a real cure for cancer might look like.  Genes would be added to or removed from cancer cells to either stop the uncontrolled growth, or make the cancer more susceptible to existing treatments.  It’s a fascinating idea.  Unfortunately in the case of TP53, the virus worked great in a petri dish, it worked great when injected into mice, but as frequently happens it didn’t work so well in humans.  Follow the link above and scroll down to section 7 for more information.

One final thought on genetics: genetic changes are random, and not all of the changes work in the cancer’s favor.  I found it interesting that my cancer has 6 copies of the CEPBA gene which is thought to be a tumor suppressor.  Obviously it’s not stopping the cancer from growing but it is an interesting detail nonetheless.  Also, I’m missing one of two copies of the XPO1 gene, which is thought to be related to resistance to chemotherapy.  Assuming extra copies would make the cancer more resistant to chemo, this seems like a rookie mistake by my cancer.  It gives me hope that my current chemo may work for a long time to come.

So to sum up: boring old chemotherapy can work as well as if not better than the latest and greatest drugs.  It all depends on the specific genetics of the cancer.  Also, cancer is not a death sentence, and failure of standard treatments is also not a death sentence.  I’m on my third chemo for neuroendocrine cancer and seem to be tolerating it well.  We’ve also learned from past experience that my cancer will bounce right back if chemo is stopped so we’ll be doing something different and continuing chemo as long as possible.  I’ve heard a handful of stories of patients getting chemo beyond the standard number of doses, and it seems in every case they’ve done quite well.

So I’m quite optimistic I might be able to get years out of folfiri, and should it fail there’s other off-label treatments that can be tried, or there might be a clinical trial.  If I do get years there may be brand new drugs to try that aren’t available today, perhaps even an engineered virus that could inject TP53 genes back into my cancer.  The only thing I’m certain of is that my ability to predict the future has been awful.

Another Scanxiety Post

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That's What She Said

 My previous post was very cathartic. I got to tell the story of how I genuinely felt like I was dying.  I’ve recently heard that the average survival for neuroendocrine prostate cancer is about a year, and based on the anecdotal stories I’ve heard, that might be a bit generous.  December was a very difficult month.  My body was telling me something was direly wrong, and I know how serious my diagnosis is.  I wrote about it and got all my worries and fears out of my system for now.

Today I’m feeling much better.  It’s the final day of my second cycle of folfiri chemotherapy.  Just like the previous cycle, on the final day I started feeling a lot better.  When I listen to my body, it’s not telling me tales of impending doom.  I feel almost normal.  Better yet, it’s been about a year since my most dire cancer diagnosis, so I’ve beaten the odds and a bit of celebration is in order.

Today my wife and I took a trip to our Vermont hideaway.  Rather than just tell the story, I thought I’d do something different and make a short video showing me shovelling the path to the side door.  I can say I’m feeling good, but a video of me chucking snow would be much more convincing.  It turned out that video captured a moment that I found to be exceptionally funny.

But before getting to Vermont and the video, a short detour.  The flip side of feeling good on the final day of the chemo cycle is that tomorrow is infusion day, and I know what’s in store for me in the coming week.  In about 18 hours after I write this, I’ll be hooked to not just one, but two IV pumps feeding drugs from two IV bags into my chemo port.

After 90 minutes of that, I’ll get the third drug of the folfiri cocktail.  This consists of an initial dose pushed into my port via a syringe, then a portable pump is hooked up that will deliver the rest of the dose over the next 46 hours.  Here’s a photo from last cycle, topless so you can see the pump and the tubing leading to my chest port.

I’ve gotten a lot of comments on my topless photos in the past.  Not all positive, but like publicity, any comments are good comments.

After the pump is removed on Wednesday, I typically sleep most of the day on Thursday and Friday, then start feeling a bit better around Saturday.

In my previous post I spoke of the challenge of learning to live within my reduced ability to do things. In theory doing less each day would mean I’d have more days where I could at least do something. There's two problems with that approach.

Firstly, some tasks can't be made smaller. For example, driving myself to a follow-up appointment. It's a couple hours in the car plus about an hour of getting my blood tested and meeting with the nurse practitioner. My wife could drive me, but it doesn't appear that driving is the issue. It's the two hours in the car getting my insides jostled about that's the problem.

And so, I fell into a pattern of doing something meaningful every other day, then resting on the day in between. That was until Friday.

Friday I went for a 1.0 mile walk. Saturday, as expected, I felt tired and sore as a result, but instead of resting I took a variety pack of pain medicine and went out for a 1.2 mile walk.  In theory I should have been a complete basket case today, Sunday.  But I wasn’t, which is the second problem with trying to do less.  Some days I can do much, much more than I can do on other days.

I didn't go for a walk today. Instead my wife and I took a trip to our Vermont hideaway. While it rained in southern New England, the foothills of the Green Mountains got 6-12 inches of snow.  While we have hired someone to plow the driveway, we still shovel the walkways and the deck ourselves. You might think we bought the place because of our love of shoveling snow, and I'm not sure I could argue against that successfully.

I will say that one of the things that routinely makes me sad is when I realize I spend more time in my oncologist's office than in Vermont. It's an unfortunate confluence of chemo side effects, appointments, the weather, and caring for a diabetic cat. We had a lovely multi-day visit in November, and it really bugs me that I haven't been able to repeat that yet.

But here we are now. I wrote the first draft of this by the warmth of the wood stove before we headed back to our other home. Even though I didn't walk today, I did help with the shoveling, and as mentioned earlier had my wife shoot a short video to prove it.

Unfortunately, it’s difficult to hear what I’m saying, but it should be pretty obvious that my shovelling was interrupted by a tree branch buried in the snow that was too large for me to lift and toss aside.  To me, this was very symbolic of how difficult it is to get wood up when you no longer have testosterone due to cancer treatment.  With such analogies in my head, I found my wife’s comment about the size of the branch to be intensely funny, and if you couldn’t hear it my response was “that’s what she said”.

It was an incredibly juvenile joke, but to me it was the funniest use of that sentence in my entire life.  It had several layers of humor in this context.  Firstly, my wife sounded genuinely surprised at the size of this long, hard branch.  Secondly, “that’s what she said” is actually a statement of fact.  I’ve been laughing about it all afternoon.  I’m not sure if it’s really that funny, but it’s certainly been more fun laughing than crying.

After that unexpected bit of hilarity, my wife took a video of me clearing the branch with a chainsaw.

When I watched this afterwards, my first thought was my victory pose at the end would have been mind-boggling dangerous if the saw was still running.  I want my audience to know that I stopped the Stihl (conveniently pronounced “steal”) after the last cut, so there was no significant danger in my celebration.

I did all that activity without any meaningful pain on only my base level of pain medication (no additional pills taken for “breakthrough” pain).  Yippee!  As a footnote, this is strenuous enough to get the endorphins flowing which are the body's natural opioid painkillers.  It's why being active is so good at fighting pain and fatigue and also helps lift your mood.  When I can’t be active, I’m usually downright miserable.

The next week will be difficult, as usual, but in the long run it should allow me to spend more quality time in Vermont shoveling, cutting up trees, walking, perhaps even running, and occasionally pausing to admire the scenery.  I’ve bounced back from treatment before, I can do it again.

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.