Well, This Sucks

The bitter taste of disappointment lingers in my mouth.  It tastes a bit like bad mochaccino mixed with barium.  There is a lump in my stomach.  Certainly this is partly due to the lingering effects of the CT prep drink, but the last couple weeks have been very trying.

Let's quickly go back about two years ago to my initial diagnosis, in October 2018.  I use my Garmin watch to track my runs and walks, and have found that the total mileage I cover tracks very well with how I'm doing overall.  I've probably blogged about this before, but bear with me.  This graph shows my monthly mileage totals in my first year living with cancer:

It starts off very low, because the cancer in my bones was making it difficult to move.  There was immediate improvement after hormone therapy was started, but it leveled off and then dipped in March as the accumulating effects of chemotherapy took their toll.  After that, it was off to the races, quite literally.  Multiple 5Ks and a half marathon were run in the second half of 2019.  I returned to work in July, and still my monthly mileage was increasing.

My wife recently remarked to me that she was initially skeptical of all my treatments.  She knew about the nausea and hair loss and how brutal cancer treatment can be, and wondered why anybody would put themselves through such suffering.  Then she saw me in the second half of 2019 and understood.  I was running more miles and faster than I had in several years.  I was an inspirational story of beating cancer, and the future looked bright indeed.

Now here's the monthly mileage for my second year with cancer.

It starts with a gradual decline as the days got shorter and colder, and also as early symptoms of my next cancer began to build.  It was very discouraging to have to pee every mile, especially when peeing was becoming increasingly painful, and there was a thin layer of snow in the woods that would freeze my feet during my frequent tree watering sessions.  Since my neuroendocrine diagnosis in January, things have been up and down and there's no consistent trend.  July was truly abysmal.  In my previous post I said that I was disappointed with my recovery from chemo this year, and these graphs show why.

This is all background information for recent events.  I'm frustrated with my progress and my social life is stymied by the pandemic.  But I can't stop trying, and made plans to go for a Covid safe walk with a friend who also happens to be an ovarian cancer survivor.  That walk didn't happen because she had to go into the hospital for emergency surgery on the day of our walk.  I wanted to mention this in my previous post but deferred because it seemed inappropriate to bring it up before knowing how things would turn out.

Happily, she's out of the hospital, recovering quickly, and we already have plans to walk again.  However, the day after she got out of the hospital my wife got a call because her aunt had just been found unconscious on the floor of her house and was now in the hospital.

My wife's aunt was 90 years old and had outlived her brother (my father-in-law), her husband, her two sons, and her best friend.  The best friend and a son both being lost within the past year.  She has a sister that's still alive, but they haven't been on speaking terms in decades as part of their feud that's been going on for 8 decades.  The last time we saw them together was at my father-in-law's funeral.  We were hoping they might bury the hatchet, but no, the squabbling continued.

This all means my wife is the sole surviving blood relative on speaking terms with this aunt.  She has been on the phone constantly with the hospital and they were looking to her to make decisions such as whether to put her on a ventilator or not.  She ultimately passed away the day before my CT scan.

And of course, that scan showed that my cancer has already returned.  My June scan had shown a complete resolution of my liver metastases, but now there's new lesions there as well as in my lungs.  But more on that at the moment.  While we're trying to process this my wife was making multiple phone calls dealing with funeral arrangements and trying to figure out if her aunt had a will.  Mostly her goal was to find other people to deal with these issues because she wants to fully focus on me given this recent development.

The day before my scan we did manage to get away to Vermont for a couple hours to check on our place there, and spend some time sitting by the pond.

If I may be so bold, this is a really good picture of me with a backdrop of the pond and peak foliage colors in the hills.  I'm finding more enjoyment in looking at the picture now than the moment in which the picture was taken.  It was a peaceful moment with beautiful surroundings, but I was preoccupied with my upcoming CT scan the next day.  Frankly, I didn't make the most of that moment because I feared a bad scan would make future trips to Vermont more difficult.

I do try to make the most of each day and savor every good moment, but frequently fall short of that ideal.  The best that can be said is that I don't beat myself up about it anymore, because I'm human and a very emotional one at that.

So back to that fateful CT scan.  There's a couple firsts here on my journey.  Up until now, every treatment I've been given has been demonstrably successful.  My response to most treatments has been stunning.  Most patients do respond to chemo, but not everybody sees their liver lesions shrink to the point that they can't be picked up on a scan.

In my reading about cancer, it turns out that the difference between a partial and a complete response to treatment is insignificant.  So while my responses have been dramatically good, in practice that doesn't give me any meaningful advantage over patients that only have a partial response, and my recent experience is sadly consistent with that.  It's the patients that don't get any response to treatment that have meaningfully different and worse outcomes.

Sadly, Atezolizumab is the first treatment I've had where there is no evidence that it's done anything positive for me.  There have definitely been side effects, and large bills to my insurance company, but if it was working I should have had good scans until at least late 2021.

The other first is that this CT scan found the cancer before it produced debilitating symptoms.  I had PSA tests in my 40s, which came back normal, and then within a year I developed blood in my urine and debilitating pain leading up to my diagnosis.  My neuroendocrine cancer was causing increasingly painful urination in late 2019, but my blood work gave no hints that anything was wrong, and a cystoscopy less than a week before my fateful ER visit didn't see the large tumor in my bladder.  In both cases, it was the symptoms that led to diagnosis, and not a routine test.

While I do have multiple lesions in both lungs, the largest of them is about 3mm.  That's tiny, maybe the size of a poppy seed, or perhaps a sesame seed.  Let's just say my lungs are a bit like an everything bagel.  The liver spots are larger, but still generally under half an inch.  I actually have some time to see doctors, get suggestions, and consider my options before the cancer will become symptomatic and life threatening.  This is how routine testing is supposed to work.

My oncologist still hasn't given me an expiration date, and while he does have ideas, he referred me to Dana Farber for their evaluation.  I immediately asked for Dr. Beltran.  A few months ago, when somebody on the forum asked for the best neuroendocrine prostate cancer doctor in the entire country, Dr. Beltran was the answer.  She's also researching the disease and possible new treatments.  If there's a secret weapon in the fight against my cancer, she'll have it.

A positive thought to keep in mind is that I'm generally healthy, my blood counts are only just below normal ranges, and my organs all appear to be functioning well.  When cancer patients need transfusions to keep up their blood counts and are showing signs of organ failure, doctors are very hesitant to use harsh cancer treatments because the treatment would likely kill the patient before the cancer would.

Emotionally, I'm taking all this very hard.  I had plans for the fall that were based on a stable treatment plan.  I'd see my oncologist every three weeks for a check-up and infusion.  The first week after the infusion might be difficult, but the next two weeks I'd be functional enough to get things done and enjoy life.  Now those plans and the treatment plans have been tossed into the shredder.

What lies ahead for me in the near future are many more doctor visits, more tests, and hopefully new treatments with unknown side effects (which is to say, until I know what the treatment is I have no idea what the expected side effects might be).  I was supposed to be spending time in Vermont cutting up firewood for the winter of 2021, not driving into Boston to see new doctors.  It's best described as a horrific loss and I'm going through the grieving process.  Imagine the worst heartbreak you've felt when your dreams were squashed and that's probably pretty close to what I'm feeling.

Back when my treatments were working and I was running over a hundred miles a month, I wondered how I would handle treatment failure and the prospect that there are no good treatment options remaining.  I find myself in that situation right now.  There are a number of treatment options still available, but no "good" ones that are more likely to work than not.  It's the trial and error stage.  Treatments are guaranteed to have side effects, and nobody can really say how likely any of them are to work because the studies haven't been done yet.  One option my oncologist threw out is a colon cancer drug.  It might also work for prostate cancer, but it hasn't been studied and approved for that use.

I am trying to pay very close attention to my thoughts and emotions.  I'm trying to identify them as grief or despair and find the source of the emotion.  In my mind, it's perfectly healthy to grieve for a significant loss, but unhelpful to fall into despair.  I want to be clear about what my goals are, and work with my doctors to find the best way to meet them.  Hope and despair have no place here.  Dispassionate decision making is what I'm after.

After a few meetings with the nurse practitioner at my oncologist's office, I get the impression that I'm pretty good at being my own therapist.  I've told my wife that if I get stuck in a bad place, she should urge me to seek professional help.  So far, I've managed to unstick myself when needed.

So in summary, my situation has gone from bad (metastatic prostate cancer) to worse (neuroendocrine cancer) to nightmarish (the one standard treatment for neuroendocrine cancer has failed).  Make no mistake, I cry about it.  A lot.  But I'm also making appointments with Dana Farber, getting out for walks, and making pandemic friendly social plans.  I can still laugh at YouTube videos.

A lot of people have told me how inspired they have been by my story, and I can't let my audience down by falling into an inconsolable mess of endless crying.  I can't guarantee that I'll fight back the cancer and live for years.  I can guarantee that I will do everything reasonable to fight it.  I'm very excited about meeting with Dr. Beltran.  The thought of taking part in prostate cancer research motivates me.  There's a chance I'll have a wildly successful response to a new treatment.  But even if it fails, I'd be helping to advance the science and that will help men in the future who develop my cancer.  I can't think of a better way to fight cancer than to help people working towards a cure.

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.