A Day in the Life

It's been too long since I've posted something.  It's not that I haven't written anything, it's that I haven't written anything I like.  Today's post is simply about what happened to me today, and not an over-ambitious attempt at making the next literary masterpiece.  It does help that today was interesting and involved cars.

Anyhow, today was the first good-ish day I've had since completing the infusions for my current cycle of chemo last week.  If you follow me on Facebook, you've seen all the whining about every little bit of malaise I've been feeling, when in fact I'm handling chemo rather well by chemotherapy standards.  Basically that means I haven't been to the ER or been on the phone with my doctor unexpectedly.

Today I had one goal: Go to the pharmacy and get some drugs.  So out into the garage, hop into the Prius and... nothing.  Deader than a door nail.  Looks like the 12 volt battery went dead.  Without that, it can't boot the car and turn on the high voltage battery to start the engine.

Now here is where I go off on a long tangent about modern cars, except that if this is an automotive themed post it really isn't a tangent, is it?  The 12 volt battery in the Prius is located under the hatchback.  This isn't a bad idea in itself, except the hatch release is electrically operated.  You can't get direct access to the battery unless the battery is working.  Brilliant!

There is a connection to jump start the car under the hood.  But the car is parked nose-first in the garage, and with a dead battery it's impossible to take it out of park and roll it out into the driveway.  Brilliant!  Where's my battery charger?  (which basically means three laps of the house looking for it)

Hook up the battery charger and... nothing.  Hmm, why isn't this working?  Where's my multi-meter? (another three laps of the house) Oh rats, the batteries leaked and that's not working.  It's bad enough cancer treatments have removed all testosterone from my body.  My masculinity is hanging by a thread, and I really need to be able to competently deal with a dead battery or it will be the last straw leading to my man card being revoked.  Don't you realize how serious this situation is?  I'm supposed to be a car guy!

Where are my jumper cables? (add three more laps, my step count is going to be really good today!)  I'll take a battery out of another car if I need to.  No, wait, the cables are just long enough to reach the battery in my Mustang parked on the other side of the garage.  Literally not an extra inch of length to spare.  And we're off to the pharmacy!

Hey, why is the interior light on?  Ah, that must explain the dead battery.  Wow, accidentally leave the interior light on, and you can't get anything out from under your hatchback without a jump start.  Have I already mentioned the brilliant design decisions in modern cars?  I'm an old fashioned guy.  The Mustang has a simple old fashioned switch in the door.  If the door is open the interior light is on.  Close the door the light goes off immediately.  If the battery is dead you can just put it in neutral and easily roll the car.  Better yet, if you have a hill, roll a few feet and pop the clutch.  But I digress, I was on my way to the pharmacy.

The Prius is an exceptional car for drive-throughs.  The gas engine turns off when you enter the parking lot, and stays off while you drive through the parking lot, though the drive through, and doesn't restart until it's time to accelerate back onto the main road.  Some people refer to it as "golf cart mode".  I own a Prius because I live in Massachusetts and traffic sucks.  It's sucks worse with a stick shift.  It sucks the most when it's snowing and you're stuck in traffic with a rear drive stick shift.  Fishtailing every time you drive forward a car length at the stop sign gets old pretty quick.

I've digressed again, but now I'm at the window and pay a $40 copay for about $5000 worth of drugs.  That's not an exaggeration, and that's for just one of six cancer specific drugs I'm currently on.  Cancer isn't cheap, or at least it isn't cheap for my insurance company.  Some cancer survivors go through all the same crap I've been going through and have to deal with bankruptcy as well.  But my insurance has been fantastic so far, so one less thing for me to worry about.

And back home.  I must say, the adrenaline rush of a dead battery sure pushes the side effects away for a while.  I'm feeling pretty good and it's not cold and rainy today.  I think I'll take the Mustang out for the first time in weeks and find a place to walk in the woods.  The Midstate Trail should do nicely.

The black flies were out, but with a bit of wind they weren't too bad.  I do miss my long hair.  When taken out of a ponytail, it provided excellent defense against all sorts of flying and biting insects.  But it's a cool day, I was wearing a hat for most of it.  When going uphill, I'd overheat and take the hat off.  I'm not use to the feeling of wind blowing directly on a sweaty scalp.

It was a very slow walk with a very high heart rate and lots of heavy breathing.  My lack of hair is a reminder that my lungs and digestive system are faring about as well as my follicles.  In other words, not very well at all.  But I'm enjoying the outdoors with nobody else on the trail, which was the goal of this particular exercise (pun intended).

And as usual, I found myself a mile deep in the woods and getting a bit tired and sore.  Well, calling for help is't a great option so I'll have to keep walking until I get back to to the car.  Historically, the best way for me to complete a 10 mile run is to get myself 5 miles from home without a cell phone.  It virtually guarantees the run will be completed.

A Mustang isn't the most comfortable car for a body full of bones and joints damaged by cancer and inflamed by exercise, but again, I find myself in a position where there is no great alternative.  In truth it wasn't that bad.  Sitting is a lot more comfortable for me than it was after my original diagnosis in 2018.  Most of my current pain is caused by my urinary stent, and one of the drugs I picked up today will help with that.

And now I'm wrapping up my day writing this post.  I'm pushing myself a bit, because I'd really like to crash on the couch and fall asleep in front of the TV.  It's been a great day.  More was accomplished today than in the entire preceding week, and I didn't actually do that much.  Tomorrow's goal is to take a bunch of trash, recyclables, and a couple gallons of used motor oil to the town transfer station.

Between the severe cancer diagnoses and disability applications, I frequently get asked if I'm able to complete the "activities of daily living" (ADL).  They are asking if I'm able to dress myself, bath myself, and prepare meals.  My wife handles the meal preparations, so my personal ADL list includes routine car service like oil changes, taking trash to the transfer station, and of course, occasionally getting out a chainsaw and cutting up a downed tree on the property.  I'm very happy to say that I've accomplished a full day's worth of ADLs in the month of April.

Precious, Malaria Drugs, and an Update

Photo Opportunity

There’s nothing like a worldwide pandemic to suck the joy out of living with cancer.  It’s cut me off from socializing with friends on my good days, and taken away the auto racing I was looking forward to for entertainment while laying about on the couch on my bad days.  Indoor track season has ended, so I’m left to my own devices for photo opportunities.

I repeatedly make jokes that cancer treatment is slowly turning me into Gollum.  Recently, a meme went around the internet showing Gollum calling a roll of toilet paper “precious!”.  Let’s put the authenticity of my joke to the test, shall we?

Hmm, I still have a bit too much hair in front, but from the rear I assure you I look very much like Gollum.  It’s continuing to fall out, so by the time they do another Lord of the Rings movie I truly believe I could play Gollum without any makeup or special effects.

Cancer, Coronavirus, and Treatment Hype

There’s so much I could say about Covid-19 and how it parallels the experience of having cancer, but today I’ll just stick to the hype over potential treatments.

There’s been a lot of hype in the news about the potential for malaria drugs to treat Covid-19.  The FDA recently approved the use of such drugs, despite a general lack of rigorous evidence that they do anything.  Could malaria drugs stop the virus and get us back to being a normally functioning society?  I’m not holding my breath.  Let me tell you a story.

Chemotherapy kills cancer cells, but it also kills healthy cells.  Generally, the dose of chemotherapy is limited by the bone marrow.  Too much chemo kills all the bone marrow and you can’t make blood cells anymore, and you die.  Back in the 80s or so, somebody had the great idea that if you harvested bone marrow from a cancer patient before chemo, you could use a much higher dose that would be lethal to the bone marrow and kill more cancer in the process.  That was okay because after chemo you would transplant the harvested marrow back into the patient and it would resume making blood.

Patients clammored for this.  They wanted painful surgery to transplant bone marrow, and they wanted their insurance companies to pay for it.  They sued their insurance companies for not covering the procedure even though no studies had been done to show it was effective.  Patients generally won these lawsuits and the insurance companies were forced to cover them.  Guess what?  When studies were eventually done in the 90s, they failed to show any benefit.  Just lots of extra expense and suffering for the patient for no tangible benefit.


So what does this have to do with malaria drugs such as Hydroxychloroquine?  With any drug, there are two important doses: The effective dose at which it is effective against the disease or condition it is intended to treat, and the lethal dose at which serious side effects or death become common.  For a “safe” drug the effective dose is much lower than the lethal dose.  Take Ibuprofen as an example: everybody gets 400 mg.  That’s enough to be effective for a 250 lb person and not enough to be dangerous to a 100 lb person.  Simple!  Chemotherapy drugs aren’t as safe, and the dose is based on body weight and height.  If a toxic reaction occurs, the dose is usually reduced or a switch to another drug made.

Pop quiz, can anybody tell me the effective dose for Hydroxychloroquine when used to treat Covid-19?  It’s a trick question: Nobody knows because those types of studies haven’t been done yet.  We do know based on experience with other diseases that side effects such as macular degeneration (which can lead to blindness) can become an issue at doses of 400 mg/day.  Meanwhile, a small French study using 600 mg/day (a not entirely safe dose, but probably okay for a few days) in combination with an antibiotic found “no evidence of rapid antiviral clearance or clinical benefit”.

That’s just one small study, but one that mentioned the dose used.  Results of other studies have been mixed.  It’s fair to say that the combined results of the studies that have been done haven’t lived up to the hype.  Malaria drugs might still turn out to be helpful, but aren’t a magic bullet.  If they do have a benefit, it may be in high doses when used on the critically ill who are perfectly okay with some chance of having impaired vision.

That is a bit speculative on my part, but I wanted to illustrate the difference between anecdotal evidence where it appears to work really well in one or a small group of patients, versus developing a formal treatment protocol where you can confidently tell doctors what dose to use, when to use it, and what side effects to expect.

They may eventually be shown to have some benefit, but perhaps at dosages that border on unsafe.  A risk of going blind may not be an issue if you’re about to die, but it is an issue if you have only mild to moderate symptoms and are expected to recover.  I don’t see doctors prescribing Hydroxychloroquine at the first sign of a cough and telling you to go back to work.

It’s disappointing to hear that the miracle drug promised on the television isn’t what it was advertised to be.  This is what cancer patients deal with all the time.  When I was first diagnosed with prostate cancer, I had high hopes for a drug called Prostvac.  It was an immunotherapy drug that would allow a patients immune system to attack cancer, and had very good results in early, small studies.  At the time of my diagnosis, a phase 3 trail was underway that would eventually lead to approval of this life saving drug, and it would eventually be available to me in the likely event that my current treatment eventually stopped working.

Unfortunately, the trial was terminated early because “At the third interim analysis, criteria for futility were met and the trial was stopped early.”  In fact, it appears the control group was doing ever so slightly better than the experimental group.  Suffice to say, this outcome wasn’t very good for the company’s stock price.

I feel your pain and frustration of being over-promised and under-delivered.  More importantly, now you don’t just know, but have felt a bit what cancer patients and others with chronic or life threatening diseases go through regularly.

My Quick Update

The third cycle of chemotherapy is kicking the tar out of me.  It was a rough first week, and the second week started with injections of Lupron and Xgeva for my original prostate cancer, which re-invigorated the side effects.  My bones hurt when pressure is applied to them, which is to say that whatever part of my body I’m laying on is painful.  It’s not awful pain, but I do need to take pills to be comfortable enough to sleep.

As I said at the beginning, the pandemic is taking the fun out of cancer.  Indoor track is over, no road trips to meet friends, no watching auto racing on TV.

But I’m slowly adapting.  Eventually I will get to video chatting with people, but am a bit hesitant after a recent phone call had to be cut short due to what I’ll politely call digestive side effects.  Also, by brain doesn’t always thing correctly.  You can’t tell right now because I have a backspace key.  Or maybe you can, I left the typos in an earlier sentence in this paragraph.  Spell checker said it was all okay.

I still get out for walks regularly, and occasionally throw in a short bit of running.  Why, just earlier this week I ran almost a quarter mile, and my heart rate only went up to 192 for that short, slow, downhill effort.

I’ve also rediscovered Gran Turismo 5 on PS3.  Playing it is a bit like an odd form of meditation.  If I don’t stay in the present moment of driving a car at high speed on a virtual race track, I quickly end up crashing into the wall.  This game can absorb hours very easily, when I’m feeling well enough to sit up for that long.

And of course I write blog posts occasionally as well, and think about what shockingly oddball pictures I can put in them to keep my readers amused and shocked.  Yes I know today’s image cannot be unseen.