23 Month Update

 A Talking Heads song was stuck in my head yesterday, only with the lyrics "psycho kitten, meow meow mao, meow meow mao". This is probably because the cat doesn't like riding in his carrier in the back seat and is voicing his displeasure nonstop for 2 hours.

We were on our way to Vermont to spend the night for the first time since May.  Since the start of my last cycle of chemo in June, I've only felt well enough for an occasional day trip.  I much prefer the air conditioning we have in Massachusetts during the hot summer months. And there was another complication.

Back in July our cat was diagnosed with diabetes. As a result, he needs an insulin shot every night, so we can no longer leave him at home with food and a clean litter box for a few days.  Technically we could, but it would be very bad for him.  So we take him with us, and he's not very happy about it. He's also not very happy about the daily shots or the frequent trips to the vet. Cats just don't exude joy like dogs do.

Of course, one reason the cat is unhappy is he doesn't know what's wrong with him, or why these things are happening to him, and he has no control over the situation.  I can relate. I feel the same way about cancer quite frequently.

On the drive my wife and I discussed the options we had with regards to feline diabetes. We could have euthanized him, and though some people would look down on us for doing so it's a perfectly legal option. I mention it because it is an option and will be relevant later in this post.  We could have also put him up for adoption, or as mentioned above just left him at home and let his blood sugar skyrocket. None of these are great options, so it's a slam dunk to take on the extra burden of traveling with the cat.

As for me, I'm not recovering as fast as I'd like from chemo and radiation. Which is to say, I'm not making the stunning progress I made after chemo last year, where I went back to work full time and ran a half marathon.  Last year set my expectations way too high for this year.

Actually, it's a bit worse than that.  Last fall I had quite reasonable hopes of an extended remission, and was planning to run a full marathon in 2020.  Getting a new diagnosis of a different, even deadlier form of cancer has scarred me. How can I reasonably expect any remission to last after that experience? The thought that my current treatments might still be working in late 2021 feels laughable to me, but it's entirely possible.

Still, at an emotional level I seem convinced that one of my cancers will return before I regain a significant portion of my health and fitness.  This feeling isn’t helped by my recent PSA tests, which have gone from undetectable to a very low but still very detectable 0.02.  It could be nothing, or it could be the start of a trend.  It definitely is a source of anxiety.

One thing that many people have trouble understanding is that even though chemotherapy is done, I’m still on multiple treatments and still am getting an infusion and shots every three weeks.  These infusions usually cause significant fatigue and increased pain for the first week or so.  My mood has been getting very low.  I sometimes wish I were dead.  It’s not a very sensible wish for somebody who’s put so much effort into staying alive, and could very have no detectable cancer in the very near future (there’s reason to believe my PSA may go back to undetectable at the next test).

I’m currently at the very end of my three week cycle, and will have my next infusion tomorrow, and a CT scan a week after that.  It feels like today is the last day of my life, because the infusion will put me out of commission for the next week, and then the CT scan might show something that will lead to more tests and a change in treatment plan.  Or my PSA may have gone up further.  It’s not really the end of my life yet, but it might interfere with future trips to Vermont.

Of course, I have to remind myself that similar to our diabetic cat, there are options, and unlike the cat I’m involved in the decision making process. Wishing for death is similar to euthanizing an animal.  In a way it’s the easiest option because I wouldn’t have to deal with the discomforts and anxiety that accompany life with cancer.  Life with cancer isn’t for wimps.  But maybe there are other options that are better?

I could refuse further treatment.  I’d certainly live longer than if I euthanized myself, and it would improve my quality of life in the short term.  But most likely the cancer would grow right back and I’d be having symptoms instead of side effects in a relatively short amount of time.  That said, I do think the medical and pharmaceutical industry is too focused on survival because it’s easy to measure, and ignores quality of life because that’s so subjective.  It’s something that needs to be talked about more because there are some very expensive cancer drugs that only modestly lengthen life but cause disabling side effects.

Here’s an interesting thought I had this morning:  If I had a CT scan a year ago, around the end of September, it would probably have shown my bladder tumor in a much earlier stage.  I was already starting to get some minor symptoms at that time.  Treatment could have started earlier, and most likely I wouldn’t have needed a stent.  But it would also have derailed my half marathon and stopped my return to work much sooner.  In other words, had I known about my latest cancer sooner, I would have missed out on some of the happiest days of my life.

In my dark moments, I have to remind myself that I've made a conscious decision to play the long game. I've responded very well to treatment so far. My liver was cancer free in my June scan.  I'm hoping between the radiation and immunotherapy my bladder can become cancer free and the stent can be removed.  My oncologist was flexible with the scheduling of the scan, and I specifically chose this time because it’s right before my next urology appointment.  The scan results might directly influence the decision of whether to remove the stent, or replace it with a fresh one.  Not only does having a stent suck, but it requires periodic replacement and that’s a minor surgical procedure involving anesthesia.  I’m enduring these treatments to have the best chance of losing the stent, and if they lengthen my life, that’s a bonus.

So back to Vermont.  Yesterday my wife and I were moving firewood around the property. My father in law built a number of wood sheds up here, so we cut firewood to fill them up and let it season, then load the wood into the pickup to transport it to the shed next to the house. It's a lot of physical labor but we enjoy it.  There's something very primal and satisfying about going into the woods and harvesting trees to keep warm during the cold months.

Some of the wood we brought down was large and needed to be split. I got out my maul and hammered away at the knot free pieces. Again, there's something very primal about swinging an 8 pound maul and splitting a log in one hit. It's a great upper body workout. I wonder how many cancer patients are doing this?

For the knottier pieces, I’ll get out the chainsaw and cut the log lengthwise partway, then put a splitting wedge in the slot cut by the saw, whack the wedge a few times, and the pice will usually split apart, especially if I cut through the knotty section with the saw.

Of course, when I got the saw out and filled it up with gas and bar oil, the cap for the oil tank broke rendering the saw useless.  Great.  I’ve got treatments and tests in the coming weeks and I really don’t need the bother of tracking down a replacement cap.  Such little annoyances of life become magnified when you only have a few precious hours in a day when you can function.  But happily I had another saw available, so this little hassle can wait for a bit.

This is all very physical work, and I was greatly enjoying it for a while.  But then I started feeling a bit dizzy and had to take a break.  Later on it felt as if my body just shut off, and I went into the house to lay on the couch and wrote part of this draft on my cell phone.  I do spend a lot time laying on the couch or sleeping in bed, because that’s when my stent is the most comfortable.

In total, I probably spent about 90 minutes yesterday doing physical labor.  That’s a vast improvement over earlier this year, but a far cry from what I used to be capable of.  I’m not feeling as enthusiastic about physical labor this morning.  I’m back on the couch rewriting this post, again, on my laptop while my wife is outside splitting firewood with a wedge.  I can hear the hammering.  She doesn’t have the strength or desire to swing the maul, but makes up for it with persistence.

There’s something about our property in Vermont that encourages being active.  It was cold last night and I lit a fire in the wood stove to take the chill off, and again this morning.  It’s something that gets me off the couch for a few moments, and requires brief bouts of activity to bring firewood in from outside.  We don’t have any TV up here, and the accommodations are rather modest and frankly not as comfortable as our home in Massachusetts.  It all adds up to making it even easier to get outside and get active.

Even our diabetic cat is more active.  While we’ve been away the mice have taken over the place.  We knew our cat liked chasing and killing birds when he lived with my father in law (one reason we have kept him indoors since we adopted him), but didn’t know he was also interested in mice.  He spent hours in the basement last evening chasing them around, which we’re very happy about because mice that are running from the cat aren’t procreating or finding places to hide seed.  To me, it’s a better pest control method than using traps and poison.

I also told the cat numerous times that mice are a high protein, low carb snack ideally suited to a cat with diabetes.  Another amusing anecdote: we use a wheat based, biodegradable kitty litter.  We noticed not long ago that the litter box that we had left up here was completely devoid of litter, but had a fair number of mouse droppings.  It seems we’ve been feeding the mice, and they don’t even mind that the litter was used (I left some used litter in the basement hoping the smell would deter the mice, but they ate it!)  It’s entirely possible that at some point in time the cat will go to use the litter box and end up pooping on the head of a mouse trying to get a snack.

I’m feeling good at the moment, but we’ll be travelling back to Massachusetts later today so I can get my treatment tomorrow.  It’s almost certain that in the days afterwards I’ll be feeling more fatigued with increased pain, and I’ll be feeling very distraught that I’m not well enough to be outside running or harvesting firewood.  I’ll also be very anxious about my upcoming tests.

Here’s what you can do to help: Reach out to me!  Send me a message or we can even try a video chat on Facebook.  Tell me a joke and make me laugh.  Prayers are great, but laughter is truly the best medicine, IMHO.  You can even tell me about the stupid little problems in your life that aren’t nearly as bad as having cancer, because it will distract me.