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.