Day 214, I Want a New Drug

I Want a New Drug
In my previous blog entry, which turned into a creative writing exercise, I hopefully painted a picture of rapid improvement in my condition mixed with some fear of the side effects of the next drug in my treatment.  I started that new drug just a few hours after that blog post.  It seems my fears of the side effects were not unfounded.

This is not any ordinary pharmaceutical.  It’s not something they keep on hand at the local CVS.  Instead, it’s handled by a specialty pharmacy (in this case, CVS specialty) which then ships the drug to a normal CVS for pickup.  It could be shipped directly to my home, but I’d worry about the local wildlife getting into the package while we’re away.

Before it would ship, I had to talk on the phone with the specialty pharmacy and answer a bunch of questions, then there was the mandatory consultation with a specialty pharmacist who admitted it’s hard to have any meaningful questions until I’ve actually taken the drug.  So we talked about the finer points of how to take pills on an empty stomach to fill some time and then my medication was sent on its way.

There was a bit more paperwork and a surprising number of handouts at the actual pickup.  The specialty prescriptions were waiting on the tippy top shelf in humble brown bags, versus the white bags used for normal drugs.  Inside the brown paper bag was a rather frightening plastic bag.

Looks like this ain’t yo momma’s aspirin!  I was somewhat surprised by the use of the term “chemotherapy drug”, because it’s not the cytotoxic, kill everything that grows type of drug normally associated with chemotherapy.  In this case, it seems to mean “prescribed by an oncologist”.

Safety precautions aren’t that severe.  The actual tablets shouldn’t be handled by children or pregnant mothers, because.. well I’m not sure actually, but it seems to make sense that you want to keep anything that mucks about with hormone levels far away from growing bodies.

And what this drug does do is muck with a specific enzyme that performs one of the steps in making testosterone, and who knows what other hormones are being suppressed as a result.  It does suppress some of the normal stress hormones such as cortisol, so I also have a prescription for a low dose of prednisone which acts like cortisol and serves to replace the suppressed hormone.

With all the hormonal mucking about, it’s not terribly surprising that in the days after starting this new drug I went from feeling strange to totally exhausted and depressed a few days later.  “Depressed” isn’t quite the right word, as it implies laying listlessly on a couch.  What actually happened was an emotional breakdown that consumed a rather surprising number of tissues.

My emotions are about as hormonal as it’s possible to get.  In a strange way that’s good news, as the drug is doing exactly what it was prescribed to do.  To make things even more fun, my occasional hot flashes have gotten more intense.  Now instead of being uncomfortably hot a number of times a day, I get uncomfortably hot and sweat profusely.  This is mostly just an annoyance until it starts waking me from my sleep.

The good news is I may have hit bottom over the weekend and have been improving since.  It’s hard to say for sure, because before any of this started I was already a bit cyclical in my moods.  Sort of like being manic depressive, but not to the extent that I’d be diagnosed as such.  So it’s really hard to say if my bad couple of days were caused by starting the drug or were just the usual two steps back after a very impressive three steps forward in the preceding weeks.  Most likely it’s a combination of starting the drug at the exact moment I was due for a crash anyway.

Time for a quick musical intermission:

During this low period, there’s been lots of angst and worry by me about whether I’d be able to stay on this drug or not.  After having had a decent run this morning (that’s a bit of understatement), I’m feeling much better and will just stay the current course until I meet with my oncologist a week and a half from now.  That would be an appropriate time to review how I’m responding to the drug (including blood tests to check liver function) and discuss whether a dosage adjustment to either the drug itself or the prednisone makes sense.

About that run: I’ve been making an effort to increase the length of my runs recently, and set another high water mark today of 6.8 miles in just over 90 minutes.  That kind of pace isn’t going to set my hair on fire but not that long ago I was struggling to do less than half that distance in more than half the time.  If it didn’t feel quite as great as some of my other recent runs, that probably has a lot to do with the slightly warmer and much more humid weather we’re having today.

So in summary, my new drug is currently playing head games with me, but in the objective world of time and distance, my running isn’t showing any noticeable effect.  I haven’t even been on it for a week yet so it’s time to chill a bit and see where things are at the end of the month.

P.S. It’s really awesome that this post was entirely about side effects and not a word about the cancer itself.  Many men end up on this drug because other drugs stop working.  In my case it’s hopefully going to deliver a knockout punch.

P.S. 2 “The drug” is Abiraterone, it’s just easier to type “the drug”.  It’s also fun watching the non-pharmacists working the counter at CVS try to read it off their computer screens.

Day 208, Inspired by Kurt Vonnegut

For the better part of a week I’ve been trying to write the ultimate blog post.  There were high expectations that it would bring hope to fellow cancer patients, inspire those without cancer, and generally make the world a better place.  To maximize my creativity, I eschewed the computer in favor of writing a draft by hand by candlelight.  Unfortunately, I gave that draft to fellow writer Kilgore Trout to get his thoughts on how it could be improved even further, and he lost it.

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The draft went into exquisite detail about medical technology and what it can and can’t do with regards to assessing the state of cancer.  There was a beautiful long narrative about the journey of radioactive tracer from the veins, to the bones, and finally through the kidney and into the bladder.  You should have seen my new bone scan, with it’s bright bladder full of tracer that outshined even the brightest of tumors.  Of course, those tumors may now in fact be dead or dormant and what is showing up on the scan could be bone healing.

There was a very funny passage about how dormant cancer is just like dead cancer, except that dormant cancer could wake up at any time.  Treatment continues to keep the cancer dormant with the hope that it will die peacefully in its sleep.  There were comparisons made between me and supervillains that keep their foes alive so that they might have a slow painful death.  I had re-watched “Austin Powers” several times to get every nuance about what Scotty Evil said about the expediency of immediately shooting your adversary, but sadly that quote is now lost.

So while there’s very little evidence for any active cancer, treatment is ongoing to keep it away.  This cancer thing is taking longer than I expected.

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I went to great lengths to discuss the numerous intricacies of being on disability leave from work.  How I’ve had huge improvements in the last couple weeks as my recovery from chemo picks up speed.  For months I’ve had the idea in the back of my head that this summer would be a good time to get back to the office.  There’s still a few hurdles to overcome, but at the moment it’s a good possibility.

In one of my more inspired sections, I had plotted my return to work as if it was an engineering project.  Unfortunately all my Gannt charts and Scrum stories were lost with the draft.  Gantt charts aren’t normally part of Scrum, but I had combined parts of waterfall and agile methodologies into a new process that would have revolutionized software development.

In any event, there is an extra incentive to get back to the office before October.  To continue on disability leave past then would require applying for social security disability.  Apparently they would want specific explanations as to why I am unable to work, and honestly, I think it’s counterproductive to my recovery to focus on my limitations.  If I applied today, it would likely be written as a series of haikus.

Cancer causes more paperwork than I expected.

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The lost draft was 600 pages long, if you’re curious.  Shorter than any Game of Thrones novel.  I like to keep things concise.

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I do still have the graph from my Garmin showing how much I’ve run in each month for the past year.  Shockingly, the shape very closely follows how I’ve felt for the past year.  I just might be crazy enough to use running mileage as a metric for my recovery.

Note the fall in mileage starting in August until my diagnosis in October.  At the time I thought it was an overuse injury, but in retrospect it was actually symptoms of advancing cancer.  While it may seem that I'm running a lot, it's not even half of what I used to do while working full time.  Any running just gets a lot more publicity now because of the cancer and chemotherapy things.

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My cell phone rang just now and it was the pharmacy calling to let me know my abiraterone acetate is in.  This is a second line hormonal agent that will drive the cancer into a deeper state of dormancy, and hopefully cause even more to die in their sleep.  I hope it gives them nightmares too.

True story:  Years ago I dabbled in teaching myself to play the guitar without much success.  Recently I’ve started that up again.  I wrote a song about my treatment.  Each verse covered a different drug, from leuprolide to docetaxel to abiraterone acetate, and then the chorus lamented that they all had the same side effects of joint pain and fatigue.  The bridge leading into the guitar solo mentioned some other pharmaceuticals that can help offset the side effects.

The reader might want to ask themselves if “true story” applies to the entire paragraph above, or just the first sentence or two.

This should be the last medication change for a very long time, finally.  My return to work has taken so long because just as I start to feel ready to return, the next treatment is on the horizon and I don’t know how it will affect me.  I’m hopeful this one will be a non-event.

This cancer thing involves more drugs than I expected.

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What wasn’t in the lost draft was the tale of my root canal gone bad.  I had dental pain early last year that resulted in a root canal.  Unfortunately the endodontist who did it missed one of the canals, so it’s since gotten re-infected.  I find the timing suspicious as it seems to have happened when my immune system was compromised due to chemo.

I’ve gone from pain and digestive issues due to chemo to dental pain and digestive issues due to antibiotics.  This cancer thing has more twists and turns and ups and downs than I expected.

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The best way to offset fatigue from all those cancer drugs, counterintuitively, is exercise.  My original draft included detailed descriptions of some very aerobic celebratory dances that can be done when you receive good news such as finding out that the promising but rather expensive cancer drug will be covered by your health insurance, even though your oncologist is prescribing it sooner than usual.

I’ve been trying to continue my explorations of the Midstate Trail, but all the recent rains have left the trail muddy and wet.  I did get out to the section that goes up and over Wachusett mountain recently.  It’s the steepest and rockiest terrain I’ve tried to cross since diagnosis, and while I was pleased to have the dexterity and endurance needed, it was causing havoc with my sciatic nerve.  Discretion being the better part of valor, I turned around short of the summit so that I’d be able to get back down the mountain and drive home without excessive discomfort.

At one point, the trail was so muddy it could have used a bridge over the mud and puddles to get to a bridge over the stream.

This rainy weather is taking longer than I expected.  Bonus photo:

I was pretty tired and grumpy after my hike.  While exercise helps with fatigue, it’s neither miraculous nor instant.  However, I’m only a little over a month past the end of chemo, and most of the improvement I’ve seen has been all in the last two weeks.

If it weren’t for the addition of yet another drug to my regimen, I’d be quite optimistic about getting back most of my old energy in the not too distant future.  Another drug is another unknown so we’ll just have to wait and see.

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The part of the lost draft that I miss the most was the ending.  It was very thankful of my employer, my coworkers and managers, and how supportive they’ve been.  Having great medical and disability coverage has removed any worry about cancer causing financial problems.  This cancer thing is more expensive than I expected.

Having time away from work has also allowed me to focus on fighting and recovering from the battles.  Scientific studies have shown that the best way to fight prostate cancer is to hit it as hard as possible as soon as possible.  The downside is that there are a lot of treatment side effects to deal with.  The upside, hopefully, is better control of the disease and better quality of life later on.

My simplistic way of looking at the situation is that I had a lot of cancer in my bones which was causing rapidly increasing amounts of pain last October.  Aggressive treatment is the best way to get it out of the bones and get rid of the source of the pain.  However, cancer dying in your bones isn’t any less painful than cancer living in your bones.  Once it’s dead or gone dormant, then the bones and nerves can begin healing.  I had a noticeable reduction in pain last November, just before chemo, but it’s only been in the past few weeks that I’ve had another significant reduction in pain and improvement in my ability to do things.

To put it in terms of running, not long ago I was struggling to walk (with occasional bits of running thrown in) more than 3 miles, and as often as not exercise would bring the chemo side effects to the forefront.  Most days I’d only have a few good hours to do things, and those hours were usually taken up with medical appointments.

Suddenly I’m running (with regular walk breaks) 5 miles and chemo side effects are being replaced with a runner’s high.  I’m good for over half a day, though can’t regularly handle being busy for most the day (see my Wachusett failure and its grumpy aftermath, above).  If I weren’t adding another drug, I’d fully expect to be up to 8+ miles and ready to work full time in a month or so.

I’m having a great response to treatment, and all signs point to eventually achieving a lasting remission.  This might even include going off all treatment entirely some day.  Being off treatment with no signs of disease is only slightly more likely than winning the lottery, but it does happen and so far I’m liking my odds.  It makes dealing with the aggressive treatment much easier.

This cancer thing makes a better story than I expected.

Day 199, Winning!

Note: I was given the idea of writing in the form of a coach’s pep talk in an online forum.  That idea was then combined with sports announcers Ken and Larry from a post nine years ago (https://tominmotion.blogspot.com/2010/03/).  The result is what you see here.

Ken: Welcome back to our continuing coverage of Cancer Gladiator 2019.  Today we’re in the middle of an exciting game between the Oakville Obstinates and the Prostate Piranhas  I’m Ken Wiggles, and with me as always is Larry Noble.

Larry: Thank you Ken.  For those that are new to Cancer Gladiator, it combines the best of reality television and live sports.  We take a team of healthy cells, called a body, and secretly introduce a team of hostile cells, called a tumor, and let them fight.  The game ends only when the body dies.  The referee will then declare the body the winner if the cause of death is not attributable to cancer.

Ken: And let us not forget about the controversy with Barton Hogback last year.

Larry: That’s right Ken.  Hogback was riding his motorcycle last year without a helmet when he was hit by a truck and killed.  The referee ruled the death as semi-intentional, disqualified the body, and declared cancer the winner.

Ken: Had he shown any signs of being suicidal?

Larry: Nothing obvious Ken, though fans still debate whether his sudden interest in base jumping and extreme ironing (https://www.google.com/search?q=extreme+ironing) were bucket list items or a death wish.

Ken: I’ve just heard our sideline reporter Amy Whinemore has an update with Piranhas coach Richard Duckface.  Amy…

Amy: Thank you Ken.  Richard..

Dick: I prefer Dick

Amy: Okay.. Dick, what’s your assessment of the game so far?

Dick: Well the Piranhas got off to a great start as we were able to stay hidden despite several PSA screening tests and that allowed us to play a lot of offense before the Obstinates even knew they were playing Cancer Gladiator.  We were able to move out quickly and establish lots of strategic positions.  I was very pleased with how easily we were able to infiltrate and take widespread control of the bones.

Amy: But then the Obstinates fought back.

Dick: Yes they did.  We were expecting them to bring in outside help once they knew they were in a fight to the death.  What we weren’t expecting were the multiple coordinated attacks.  That really caught us off guard, and we’ve had to fall back and consolidate our positions.

Amy: So what’s your strategy from here?

Dick: Well, we have to regroup.  The Obstinates strategy has really slowed us down.  Most of our players are either dead or on the disabled list at the moment.  We’ll have to look at the few players we have left who are still effective and try to learn from them how to counter what the Obstinates are doing.

Amy: Coach, one final question.  With a name like Richard Duckface, did you have to deal with cruel nicknames when you were younger?

Dick: No, why would you think that?

Amy: Ooookay…  Ken, back to you.

Ken: Thank you Amy.  Well, the Obstinates have fought back hard.  Larry, I understand you’ve been analyzing their strategy?

Larry: Yes I have.  It seems the Obstinates have learned from watching film other other Cancer Gladiators and are playing stronger offense early on.  A few other teams have been doing this recently with much success.  We expect more teams to be doing this in the future because it is a copycat league.

Ken: Yes, well we have come a long way from the days of leeches and bloodletting.

Larry: Not as far as you’d think given the number of blood tests the Obistanates have had.

Ken:  Good point.  We now go down to the Obstinates locker room where head coach Tom is giving a pep talk during a pause in the action.

Tom: Okay guys, gather round… quiet down… Dan, you can flirt with the nurses later.  Alright, settle down, do I have everybody’s attention?  Just wanted to say I’ve been really impressed with the effort put in by this entire team, and that effort combined with a few lucky breaks has made a huge difference.  Right now we’re winning big time but we can’t let our guard down.  The Piranhas are excellent at making midgame adjustments to counter our strategy so stay alert out there.  I know a lot of you are banged up and hurting, but I’m going to ask you to go back out there and keep fighting as if your lives are on the line, because they are.  I also have a few announcements.

First, Harry Taxotere has been moved to the inactive list.  He’s been our star player recently and done a lot of damage to our opponent, but we all know he has had some problems off the field and doesn’t get along well with all of you.  In particular the follicle and digestive squads have really been hampered by his antics.  He’s still officially a member of the team, and we may reactivate him if and when we think he can make a positive contribution.

We’ve recently added Lenny Lipitor and Johnny Celecoxib to special teams.  They will be in a support role and attempting to interfere with the Piranhas’ strategy.  In particular I’ve asked Johnny to work with Xavier Xgeva on disrupting their attempts to re-establish offensive positions in the bones.

Some of you have complained about the recent menu changes in the team cafeteria.  Unfortunately this was necessary because we’ve caught several Piranha players breaking in and stealing pizza, hamburgers, and desserts.  Cutting back on the inventory of those items and adding more tofu, fruit, and nuts should reduce the thefts and leave more for you to eat.

Finally, we’re in contract negotiations with Enrique Zytiga.  He’s a great offensive player and should keep the Piranhas on the defensive for a long time to come.  Unfortunately there are salary cap issues and we’re working through those with league president Andre Bluecross.  I can’t give you any more details than that at this time.

Okay team, it’s time to get back to the game.  The odds have been stacked against us all along, but we’re winning right now and if we keep at it we just might beat those odds and get every last Piranha.  Every cancer cell you kill today is five you don’t need to kill tomorrow!  NOW LET’S GO!