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!