Day 880 Update

I have a variety of things to talk about this post, so rather than making a super long title I’m just using the boring number of days since initial diagnosis.  Here’s what’s in this post:

1. The joy of saying “no” to your doctor
2. My really dark moment
3. An update on my Big Hairy Audacious Goal (BHAG)

Just Say “No”

As I’ve likely mentioned before, my relationship with my doctors has changed since my original diagnosis.  At the beginning it was much more structured with little input from me.  For example, I have prostate cancer so I got the standard 6 cycles of docetaxel chemotherapy.  I had bladder cancer so I had cystoscopies to check for recurrence every three months for the first year, then every six months since.

That is until January of this year, when I left a message with my urologist’s answering service cancelling my cystoscopy appointment.  It was essentially a break up via voice mail.  I get regular CT scans that have more reliably shown cancer in my bladder than the painful and stressful cystoscopy.  For whatever reason, probably cancer in my prostate, it is especially painful for me and I spend the time hoping I won’t here “uh-oh, that’s not good”.  The nurse practitioner at the oncology office said it’s a rationale choice in my situation.  It’s one variety of medical torture I’m saying “no” to.

In general I have reached “out of the box” territory, where there is no standardized treatment with rigid rules.  The current dynamic is I make the first “offer” on when to get my blood markers tested and when CT scans should occur, and if it seems reasonable my oncologist goes along with it.  I specifically asked about this changed dynamic and it’s because of the doctor patient relationship that has built up since my diagnosis, and also because it allows me to make the choices that result in the least amount of scanxiety for me.

One suggestion that got some pushback was to try one experimental three week cycle to see if my liver enzymes go up instead of down in the third week.  Of course, the day after that suggestion my latest blood test results showed all my liver enzymes went up slightly, so I sent a message retracting my three week experiment request.  After 12 cycles I’ll have a CT scan and we’ll decide where to go from there.  If I get the results I want, I’ll be saying “no” to two week cycles and asking for three.

And about those “liver enzymes”, specifically ALP.  ALP can also be made in the bones.  When cancer was attacking my bones in late 2018, my ALP was over 900.  I’m trying not to worry about it ticking up to 73 from 67, which is still lower than it was two weeks ago, and well below normal.  It’s just that it’s above the 40-ish that used to be normal for me.

My Dark Moment

It’s very tempting to write only about the good days, and ignore the low spots.  In fact, I will flat out say that this blog is biased to the positive and the good news and only occasionally delves into the dark days.  However I do believe there are good reasons to show some of the darkness, to show that I’m not some weird super human who is enjoying life with cancer (though that can be true some days), and also for the potential lessons in how to get through them.

My bad days happened Thursday and Friday last week, when most people were enjoying the unusual 60 degree early March weather.  My body sometimes responds poorly to sudden weather changes, and a bout of honest diarrhea Wednesday night probably didn’t help matters.  Fun side note: irinotecan (the “iri” in folfiri) is known for causing late onset diarrhea around day 11 of the cycle. Mine was off by half a day.

I hit rock bottom on Friday evening. It wasn’t just a bit of lingering pain, or digestive distress, or fatigue, but the whole combination of them producing an overwhelming feeling of “blah”, and knowing that my plans for the week were going south with my body.  I felt best laying in bed, any attempt to get up and move about exacerbated the blah.

After an hour or so of crying, I decided to give in to the dark side for a while.  I don’t normally talk to myself out loud, by my dark side did.  It said something along the lines of “I’m not taking any more chemo, I’m just going to lay in this bed until I die.  I’ll refuse food to help speed the process along.  Maybe some friends will visit to say their last goodbyes to me”.  It was basically a slow motion suicide plan involving NOT doing things to extend my life.  And it put a smile on my face.  I’ve said it before and I’ll say it again, living with cancer is more difficult than dying of cancer.

The interesting thing is that while saying this out loud, the more rational parts of my brain kicked in with the realization that I’d never follow through on this.  Saturday’s plans involved a tasty chocolate chip muffin for breakfast then a day trip to Vermont, and I was pretty sure both of those things would happen, and they did.  I just had to get the emotional bile that had been building up out of me.  

The moral of the story is that I’m not strong and optimistic every single day.  I’m learning to allow myself to have weak days when needed and when it doesn’t really matter.  I can tell myself “no more chemo” many times between treatments.  But, when infusion day rolls around, that’s when I have to be strong and upbeat, and say “More chemo please!  Can you put some green dye into the IV bag in honor of St. Patrick’s day?”

BHAG update

In my last blog post, written as this one is on the second day of the chemo cycle when steroids are squashing most of the side effects and blah-ness away, I set myself a big hairy audacious goal to walk or run or crawl a distance of 5K or more in 50 different municipalities.  Despite the dark days, I’ve started working towards my goal.

I wrote down a list of potential locations and came up with about a dozen mostly familiar places off the top of my head, meaning I’ll have to come up with almost 40 additional locations that I know nothing about, which is one of the points of this exercise (no pun intended).

I did a trial outing at Cathedral of the Pines in Rindge, NH, but it was a failure.  There are approximately 5K worth of trails to explore, but they were covered in snow that had been walked on repeatedly, and was now a very uneven surface with a hard coating of slippery ice.  After walking a couple laps of the parking lot, I called it a day.  It’s still on the list to try again after the snow melts.

After my bad days when I missed the 60 degree weather, I successfully accomplish BHAG #1: Devens, MA, in a snow squall with snow blowing in my unprotected face driven by winds probably gusting up to 40mph.  Devens is much windier than home, and I’m frequently unprepared for the weather conditions when I get there.

Devens was formerly Fort Devens Army Base.  The army base still exists, but only occupies a fraction of the land it once did.  The part that is no longer in use is an interesting mix of abandoned barracks, family housing for career military that are now privately owned, new construction, a technology park on one side, and what looks like a logistical/industrial park near the train tracks on the other side.

Here’s the “selfie photo or it didn’t happen” of me in front of the fence around one part that is still an army base.  This time I took care that only trees are visible on the other side of the fence.  After other photos in past years, it was pointed out that taking selfies with the army motor pool in the background might be frowned upon by the military, no matter how cool some of the specialized vehicles look.  Anyhow, in the photo note the bit of snow in the hat and that the only hair visible is grey and sticking out the sides of my head.  Ugh.

My dad did his army training here when he was drafted at the end of World War 2.  I wish my mind made the connection while he was still alive and healthy, perhaps he could have given a tour of the portions that are now publicly accessible.

It’s also great place for running in the winter, with exceptionally wide roads with enough plowed shoulder to safely run on without having to dodge traffic.  It’s where I did many of my long marathon training runs back in 2011 when I ran the Boston Marathon.  Mostly good memories, except perhaps the last mile of my first 20 mile run.  I was pretty crabby after bonking at 19 miles.

It’s also very hilly in places.  Here’s a photo of what I think are the abandoned barracks which does a decent job of showing that the terrain is definitely not flat.  There's a family story of my dad trying to walk up a hill during his training with a heavy flamethrower on his back.  Like me, he wasn't exactly muscle bound in his youth, so this story is told as if it was a comical challenge for him.  I sometimes wonder which hill this story might have happened on.

Some of the road signs are educational.  Many of the roads are named after famous battles, with a sub-sign explaining the street name.

A little further up the road I found a plaque commemorating the 100th anniversary of the Spanish Flu outbreak.  It hit the army base hard, which was over capacity.  About 2% of the soldiers ended up dying.  That’s a pretty high mortality rate for men who are young, healthy, and in shape due to army training.  Pandemics are scary when people are crowded together.  (hint: click image for a larger view where you can actually read the plaque)

And finally, a photo of photo of former military housing now service as housing for regular families.  It appears a little "foggy" because of all the blowing snow.  It's also a bit of an odd angle of the building so the garages behind it are visible.

Finally #2 (which will be the final finally) Here's the Garmin trace of my route.  3.8 miles in about an hour and fifteen minutes.  This felt like a victory of sorts, as late in 2019 I tried to go for a run at Devens and failed.  I wasn't dressed warm enough and my bladder had to be emptied every mile, which meant walking through ankle deep snow in the woods.  Such bladder problems were a sign of the not yet diagnosed tumor growing in it.  I ended up cutting my run short that day at 3.9 miles, about half of what I had planned if I recall.  Even though I went shorter and slower this week, it is still my longest walk of 2021, which gives me the highest weekly mileage total of 10.1 miles in 2021.  Hooray, things are heading in the right direction!  Just don't pay too much attention to small fluctuations in blood test results, which may have in fact been caused by the heroic effort I put in to reach my weekly goal after the setback of my bad days.

A BHAG for 2021 and an outing from 2018

What is a BHAG?  It's an acronym I read in a book some years ago that stands for "Big Hairy Audacious Goal".  It's a big goal that scares you just a little bit, and it shouldn't be a slam dunk to accomplish.

A lot of runners set a goal of running a full marathon in all 50 states.  If that's isn't a BHAG I don't know what is.  But that's a long way beyond my abilities for the near future.  A single marathon is beyond reach in 2021, in my humble opinion, but is still on my bucket list should I get a long enough remission to pull it off.

But I like the idea and came up with a modified version.  I'll run, walk, or hike 5K (3.1 miles) or further in 50 different municipalities (towns and cities) in the northeast, and I'll accomplish it by the end of 2021.  This is not easy.  It was just this past weekend that I covered 5K in a single outing for the first time since Thanksgiving day.  That left me quite tired afterwards, and didn't involve any driving to and from a different town.

To complicate matters further, it's not enough for me to just go somewhere and cover the requisite distance.  I want to take pictures and write a short description of the adventure here in the blog, so I have something to talk about besides cancer.  The "Tom in motion" blog will finally have some motion in the form of driving cars to new places and running, walking, or hiking depending on my health and what's appropriate for the destination.

There's several challenges to reaching this goal.  For starters, I'm pretty good at starting on a plan like this, but then get distracted or otherwise lose interest part way through.  My house is a museum to projects I'll get back to someday.  This would require some personal growth even if I were perfectly healthy.

This also assumes my cancer continues to shrink, side effects of treatment are tolerable, and my fitness and energy levels continue to improve.  Weather is also an issue.  It would be problematic if the best weather days are on infusion days or when I'm in the initial recovery phase afterwards.  Extreme whether like a blizzard when I'm having a good health day would cause problems with both driving and footing.

But there are many benefits to attempting to reach such a goal.  My treatment plan is to continue my chemo indefinitely.  Balancing the benefits of chemo shrinking my tumors with quality of life can be an arbitrary conundrum.  But when I have a specific goal, it becomes a gauge to help make decisions.  I can't meet my goal if I avoid all treatment because I'll be dead, so I need some treatment.  On the other hand, if the cancer is well under control but I can't manage to cover 5K, then it's time to talk about stretching out the chemo cycle or other means of making it easier to tolerate.  I'm not trying to live the most number of days, I'm trying to live the most number of GOOD days that I can.

And of course it gives me what feels like an attainable goal to focus on and write about for the remainder of 2021.  I'm quite excited at the prospect of adventure and discovery.  I can easily visit about a dozen places that I've been to before, and it's certainly in my plans to revisit them.  But to get to 50 I'll have to find places I've never been to.  And since I'll be writing about it there will need to be something of interest to grab not only my interest, but the interest of you the reader.

Finally, while this focuses me on what I can do in 2021, if I do manage to achieve this goal in 2021, it probably means I've found that balance in treatment to keep my cancer under control with good quality of life, and that will set me up for something even more epic in 2022, but I have no expectations of what that will be at this time.  Live life one BHAG at a time.

This is also my attempt to set an example of how to live well with cancer.  It's been a huge surprise how many people I've inspired since my diagnosis, but to me I'm just paying it forward as a means of thanking those who have inspired me in the past, and continue to inspire me to this day.  It's so easy to feel sorry for oneself after a devastating diagnosis, but with some effort you can have many enjoyable moments in your life with cancer or whatever other chronic ailment you have.

To give an idea of what I intend to do 50 times during the remainder of the year, here's a report of an outing to Jamaica Vermont in September of 2018.  I did a lot of such outings prior to my diagnosis, taking pictures and intending to write about them in this blog, but as mentioned before I sometimes lack the focus and discipline to follow these efforts through.  So I'm actually very happy to finally write about one of my fun adventures.

But first, a tiny bit of context.  At this time it was about a month and a half before my diagnosis of prostate cancer with widespread metastases to my bones.  The signs were there when I did this.  Symptoms of the caner in my bones were masquerading as the start of overuse injuries.  I occasionally had blood in urine, particularly after long outings such as this.  I had been to a walk in clinic, and they recommended following up with a urologist, but didn't give me any sense of urgency even though I asked how urgent it was.  And of course, the first attempts to find a urologist online were fraught with too many reviews for how good they were at performing vasectomies, which wasn't really the skill I was looking for, but I digress.  On with the report!

Here's me partway though the adventure.  Stopping to take a selfie is a great way to catch one's breath when going up a long steep hill.  If you look carefully you can see a glimpse of my ponytail hiding behind my neck.

Jamaica is the next town over from our weekend getaway in Vermont.  I ran and walked about two and a half miles to reach an abandoned road that led off into the woods to places not on any map.  The road followed a stream that's in the process of cutting a small gorge through the rocks:

About a mile down the abandoned road the road crossed a fairly wide but shallow stream.  A bit of exploring showed where a bridge used to be just upstream from this photo.  The ground was built up on both sides of the stream, but no bridge spanning the stream between them.

I got my shoes, socks, and feet wet crossing this stream, but it was a moderately hot day so cool wet feet weren't a problem.  It was down hill for the first mile to the stream, then went steeply uphill on the other side of the stream, which is where I stopped to take the selfie above.

There's a few gravel roads on the other side of the stream that appear semi-maintained in that there aren't any trees down across the road.  I found three houses back there, all off the grid.  Perhaps they're better called camps.  I don't know if people are driving through the stream to get there, or using another road that hooks up to proper roads in Jamaica.  All I know is that these roads aren't particularly suited to large trucks, so how these houses were built, maintained, and serviced (propane delivery?) are a mystery to me.  It should also be pointed out that only two of the houses are maintained.  The third is abandoned and collapsing in on itself, and that is the one that caught my attention.  For one thing, I didn't feel like I was trespassing when moving in to get a closer look and take photos.

Around the backside the outside wall of the bathroom had totally blown out, ejecting the toilet into the back yard.  I didn't know a collapsing house could cough a toilet into the yard.

Interesting that a chaise lounge is out in the backyard as if it had been recently used.  It's the first sign that the owners of this house had every intention of returning, and the reason they abandoned it is a complete mystery.  Perhaps it was because the bridge on the road washed away.  Or maybe because of a sudden death or major health issue in the family.

Our weekend getaway takes some effort to enjoy.  Besides the obvious work of maintaining two houses, there's the issue of having to pack up and drive for each visit, though going to the same place every time has its advantages.  There's some food in the fridge and clothes in the bedroom, so it's largely a matter of hopping in the car, stopping for a few groceries in route, then enjoying the place.  Every few visits a basket of laundry goes to our primary residence for washing.

Of course, Covid and power outages have made things a tad more tricky.  We do shopping at the local grocery store in Massachusetts and bring food up in a cooler.  For the time being we're just making day trips because the plumbing has been drained after the furnace quit working.  It's since been fixed, but we're waiting for mid March when the truly cold weather should be over before restarting the plumbing and restocking the fridge.

With that in mind, I can easily see this abandoned house being owned by a pair of retired grandparents, that have their children and grandchildren come to visit during the summer.  Then something happens to the grandparents, and their children are too busy with the grandchildren and work and life to come up and maintain the place, so it stays in whatever state it was left in and slowly starts collapsing as the roof fails and water leaks damage the structure of the house.  I don't see that any attempt was made to clean up the place and bring home any valuables.

I didn't dare step foot inside the house, though I could have, but it felt very unsafe and also started to feel like trespassing.  But I did put my arm in through an open window and took a picture of the kitchen:

There's dirty dishes next to the sink and an old box of borax on the window sill.  I don't know if they left it this way, or if squatters were using the place for a while.  I find it fascinating to think of the good times a family had getting away from it all in off the grid Vermont, and now that is in the past and the house is left to rot and be animal habitat.  Trees would need to be cut down before the lawn could be mowed again.  It's both sad and fascinating at the same time.

By the time I got back out our getaway, I had covered 9.6 miles and 1600 feet of elevation gain and loss in a bit over three hours.  After that outing I didn't cover more than 9 miles in an entire week until mid November when Lupron was finally starting to work and ease my pain.  I don't recall but I was probably also on opioids at the time as well.

There are several abandoned houses scattered on various roads both on and off the grid in our area of Vermont, and I like to try to visit them once a year, take a few photos, and notice the parts that have decayed in the interim.  I'd love to revisit this house as part of my 50 town challenge and see how it's changed with time, but I don't see an almost 10 mile hike in my near future.  But, I do see driving to the start of the abandoned road and being able to walk 4 or 5 miles to get to the house.  It will take a bit more training, but it feels within reach.

It's not just abandoned houses I'm after.  I know areas with spectacular scenery, a couple dams that I find interesting, and some places are just interesting to me because of connections they have with important moments in my life.  For example, in Natick there's a surprisingly large trail network behind the hospital where I get my chemotherapy.  That will probably be on the list because of the association with my treatments, even though there's nothing especially spectacular about the woods other than it being totally unexpected.

Suggestions for places that might be interesting to me and/or the readers are encouraged!

Hopefully I'll have a report on my first one or two BHAG outings by the end of next week, just before my next chemo infusion.  Spoiler alert: One will probably be Devens MA for personal historical reasons.  Life goes on despite cancer and is getting more interesting again.  I've found several fresh reasons to get up in the morning, and it feels great!

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.