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!

Day 193, Lots of News

First the happy news, which won’t be followed by any sad news. Yesterday I helped out at the Groton Road Race, ferrying supplies for the water stops onto the course, running a clock at the 4 mile mark, and finally cleaning up the water stops after the race.  It was not only a fun way to give back to the running community, but I physically felt great doing it.  As a bonus, most of my conversations were related to the race and not cancer.  For a few brief hours, I felt like a normal person instead of a cancer patient.

It also was a much needed good omen for my ability to return to full time employment later this year.  In the past week, there’s been a huge increase in how much I can do before needing to lay down and rest, and I need less rest to bounce back and get back to doing things.

And now on to the latest cancer news.  I’ve got something medical related happening four out of five days this week.  Nothing is planned for Friday, which is good because by then I’ll be peeing radioactive tracer out my very irritated penis.

Today I had a long overdue appointment with my general practitioner.  It was largely about cancer of one form or another.  For example, I’ll be doing the ColoGuard colon cancer screening test, because a colonoscopy would be cruel and unusual punishment at this point in time.  If you haven’t seen one of the copious commercials for ColoGuard, it involves pooping in a box and mailing it to a lab for analysis.  It makes me feel sorry for anybody who lives at an address easily confused with the lab’s address.

At this point, I need to go off on a tangent.  Many people in the online cancer communities highly recommend getting a second opinion, but so far I haven’t sought one out.  To me, it seems like a lot of hassle to get an opinion that might differ from the first opinion, and then how would I know which is the better opinion?  Get a third opinion as a tiebreaker?  It’s very difficult to tell an outstanding doctor from a quack if you don’t have some medical knowledge yourself.

So I’ve spent a large chunk of time learning about my disease, the available treatments, and whatever else may be helpful (things like diet, exercise, and using drugs off label).  What I’ve learned is that at my stage in the disease, where the cancer is still hormone sensitive, my oncologist is already giving me the best possible treatment from a cancer standpoint.

That said, there does appear to be a link between cholesterol levels and prostate cancer, and this is where potential treatments can fall between the cracks.  My oncologist doesn’t know my cholesterol levels, and my GP isn’t a specialist in metastatic prostate cancer (if she were, by definition she wouldn’t be a general practitioner).  There are a few rockstar doctors that specialize in advanced prostate cancer and use drugs off label such as statins (cholesterol drugs) and Metformin (a diabetes drug) and claim it helps their patients live longer.  One of them is in NYC and is now retired.  I’d rather not travel to the big city and try to convince a doctor to come out of retirement to treat me.

But what I can do is continue to look for studies that show evidence for such claims.  My GP was happy to write prescriptions for Lipitor and Celebrex at my request when I showed her a study concluding that these helped kill prostate cancer cells in mice.  It’s not clear if the results would apply to humans, but since I have high cholesterol and frequent pain, taking a statin and an NSAID will still have benefit, regardless of what it does to the cancer.  As for the Metformin, the consensus is that it isn’t a great option for me because my blood sugar already tends to be a bit low at times and dropping it further would outweigh any theoretical benefit.  Hey look!  I’m working with my doctors as a team to make treatment decisions!

So that’s my latest salvo in the war on cancer, and that’s just today.  Tomorrow I go off to the dentist to have what I think is a gum boil checked out.  This popped up right after chemotherapy was over, so let’s call it a late emerging side effect of cancer treatment.  This is generally the most boring and least worrisome day of the rest of my week.  It’s not directly fighting cancer, just dealing with the collateral damage.

Wednesday it’s off to get a bone scan, which is frequently abbreviated online as “BS”.  Sadly, I couldn’t work any BS jokes into this post.  A BS involves getting injected with a radioactive tracer, waiting for a couple hours for it to get absorbed into the bone, and then getting the actual scan.  My understanding is that healthy bone will absorb the tracer evenly.  Hot spots on the scan could be cancer or they could correspond to a recent bone injury.  One hot spot on a shin probably means you tripped over a piece of furniture walking around in the dark.  If the scan looks like a Christmas tree, it’s assumed to be very active metastatic cancer.  I meet with the oncologist immediately afterwards to discuss the scan.  Hopefully he’s not humming “Oh Christmas Tree, Oh Christmas Tree..” when I walk in.  Based on my blood work, there should be huge improvements, but of course if that was certain they wouldn’t need to do the scan.

Thursday I go back to the urologist for my three month cystoscopy.  This is where he shoves a camera up my junk and looks for a recurrence of the bladder cancer.  I’d be surprised if he finds anything, as it seems reasonable to expect that the chemotherapy would discourage any bladder tumors from growing, even if it’s not the optimal treatment for bladder cancer.  As with the bone scan, if there wasn’t some possibility of finding something they wouldn’t be doing the test.

So that’s my very busy week.  I’m very happy to be feeling better right now, as that gives me a bit of smug confidence going into the tests and I am truly expecting good news all around.  Some great advice I read is to hope that the test results are accurate.  Whatever state my cancers are in, they won’t change significantly between now and Friday.  Getting an accurate picture of their state is the first step in making a timely change to treatment if needed.

6 Month Update

Late last week I reached the six month anniversary of my diagnoses.  While not an extraordinary achievement, it is one that some patients fail to reach.  An advanced cancer diagnosis most likely means you’ve been living with cancer for years already and didn’t know it.  If you’re lucky-ish, like me, there will be some symptoms that send you to a doctor, and doctor will be able to make a diagnosis before the situation becomes immediately life threatening.  Of course, if you’re really lucky it will be caught when it it localized and curable which is usually before symptoms occur.  Doing so requires some combination of screening and luck.  I have been screened for prostate cancer, but screening isn’t perfect and I wasn’t lucky so here I am today.  I still encourage people to get screened, but be aware it’s not infallible so try to get lucky while you’re getting screened.

This post should have been written last week and posted exactly six months after diagnosis.  It should have been a long list of amazing things I’ve been up to and generally paint a picture of a man abusing his medical leave from work.  But recovering from chemo hasn’t been the picnic I expected it to be.  Falling far short of those expectations with increasing levels of pain put me into a deep pit of despair.  I’ve since clawed out of the pit and recovered enough to write again.  There may be some muddy finger prints on the first draft, as I haven’t quite gotten all the despair pit mud out from under my fingernails, which happily seem to be growing again.

I fully expected to be weak, have poor stamina, and perhaps a bit of brain fog (potentially enhanced by medical marijuana) after chemo.  I had also expected the pain would rapidly fade and the other side effects would dissipate.  My ear hair would probably start growing back, but I would be okay with that provided other, less visible hair also grew back.  Did I mention how annoying it is not to have nose hair?

What actually happened is that after a few days where my expectations almost seemed realistic, disaster struck in the form of what I think is a pinched sciatic nerve.  The pain spiked and my toes started tingling, but much of the time it would rapidly come and go with different sitting positions.

It took a few days, some Ben-Gay, a heating pad, ibuprofen, and even a bit of medical marijuana to start to think constructively about my situation.  Assuming my blood work is giving an accurate indication of the state of my cancer, this should be an orthopedic problem now, and not a cancer problem.  An internet search about how to relieve sciatic pain at home suggested using the yoga “pigeon pose” among other things.  Ha ha, that’s a good one.  I can’t even come close to doing pigeon pose.  Allow me to spend a paragraph explaining how inflexible I am.

I sometimes refer to my alter ego, “Obstinate Man”.  Obstinate Man is as inflexible as they come, both physically and mentally.  Obstinate Man believes that these newly fangled front wheel drive cars with the transverse engines won’t catch on.  Real vehicles have a V8 engine spinning the rear tires through a solid axle and will always be a transportation staple.  Who needs the expense and complication of an independent suspension?  The family fleet includes not one, but two such V8 powered, live axle driven dinosaurs.  That’s how inflexible Obstinate Man is on vehicle choice, and that’s how inflexible he is physically as well.

Of course, such mental inflexibility and obstinate thinking also has its benefits.  My expectations may seem laughably optimistic in retrospect, but I’ve actually met some of these “unrealistic” expectations.  Insert cliche here about only those that attempt the absurd will achieve the impossible.  It does work a surprising amount of the time.  The only trick is not feeling down on the frequent occasions where absurd expectations aren’t met.  It’s something where I still need a lot of practice.

Prior to my amusement at the thought of myself doing pigeon pose, I actually did have a number of good days with some surprising achievements.  As detailed in my previous posts I’ve returned to exploring the Midstate Trail.  I’ve gotten out the chainsaw and turned a sizable fallen branch into some sizable logs that need splitting to fit into the stove.  I even spent Saturday morning helping clean up the roadsides in anticipation of the coming Groton Road Race.

Of course, these weren’t all overwhelming victories.  The chainsaw showed that it’s still really painful to hold a heavy object while bending over.  The roadside cleanup showed that bending over repeatedly for an hour, even in the absence of heavy objects, can make my digestive system wonky.  Running and walking still seem to be well tolerated as they don’t involve heavy objects or bending over, but it’s still easier than I’d like to overdo them.  Sitting is sort of like bending over and can still get on my (sciatic) nerve after a while, particularly if the seat is jiggling and bouncing because it’s bolted to a moving vehicle with a poor ride due to an antiquated live axle in the rear.

At the moment it seems the heating pad is the best thing for pain relief.  Yes, it’s even better than medical marijuana, though not nearly as much fun.  I’ve started being a bit more careful about not antagonizing my sciatic, and have been spending more time resting on the couch.  My favorite way to pass the time recently has been binge-watching Scrubs on Hulu.  Like Monty Python, it’s a good fit for the way my mind works.

How strange are the workings of my mind?  Last night, after waking up in the wee hours with pain (this is a rare occurrence, thankfully), then getting a hot flash from the heating pad, I was feeling very discouraged.  In my pain and misery a very silly thought occurred to me:  What if there was a man named Jesus (pronounced “Hey Zeus”, of course), and he started a business that made various cremes, balms, and ointments with healing qualities.  He could advertise his business with a billboard that said, in big letters, “JESUS SALVES”.  (look twice at the second word if you don’t get the pun)

Day 175, Midstate Trail

With the end of chemotherapy, I’ve stepped into a brave new frontier.  It’s the first time since starting chemo that I’ve gone more than three weeks without something being injected or infused into me.  It’s a time to heal and start searching for my new normal.

It’s a time for a Pollyanna approach to life.  Until there’s clear clinical evidence to the contrary, I’m going to assume the cancer has been knocked back and will continue to diminish with time.  The alternative is to worry about every little symptom and side effect and generally live as a hypochondriac.

That’s not to say I don’t have moments where my head fills with every dark thought imaginable, only that I’m not going to focus on them and generally not blog about them.  Suffice to say that chemotherapy, as unpleasant as it was, was something to focus on and provided the feeling that I was actively fighting cancer.  When that ended, the dark thoughts came rushing back.  This is actually pretty common for cancer patients at the end of treatment.  Passively waiting for the next test result is a form of mental torture.  It’s far better to feel like you’re actively doing something.

In the long term, returning to work and as much of a normal life as possible is my plan.  I think it’s a far better vote of confidence for my prognosis than pursuing a bucket list.  Bucket lists are not without their risks.  I read a column by a woman who got a cancer diagnosis and was given 18 months to live.  She proceeded to go on a quest to knock items off her bucket list and ran up significant credit card debt in the process.  Five years later she’s still alive and dealing with the debt she ran up.

But I’m not ready to return to work yet.  I haven’t demonstrated the ability to go an entire day without the need to lay down for a bit.  I’m hoping to make a full recovery and not have to ask for an office with a bed in it.  Until that time arrives, I need something else to focus on, to help rebuild my body after treatment, and to actively fight cancer.  If you’re a regular reader of my blog, you know where this is headed.

The Midstate trail is a hiking trail in Massachusetts that goes all the way from the New Hampshire line to Rhode Island.  I actually discovered it while exploring the Wapack trail in New Hampshire, which turns into the Midstate trail at the state line.  It’s possible to walk across the entire state by simply following the trail of yellow triangles.

Several years ago, through the miracle of a GPS watch and Google Earth, I was able to explore bits of the trail as time allowed, import the track data from the watch into Google Earth, and gradually build a map of the trail I’ve covered, shown in red in the screen capture below.  If I had a bucket list, completing this map of the Midstate trail would be on it.

Life events intervened after only exploring about half of the trail, and my exploratory perambulations in the woods started happening in Vermont instead of Massachusetts.  Now life has intervened again.  Vermont is still snow covered and muddy and a fair distance from Massachusetts.  Running is too strenuous to do regularly right now, and walking isn’t quite strenuous enough.  Hiking is a nice in between that hopefully will build my speed and stamina back to the point where I can run on the roads regularly, or better yet, do trail running again.

So I set off yesterday in search of a small stretch of trail in Westminster that I hadn’t yet explored.  It was cold, cloudy, and windy.  Jeans and a leather jacket might not be typical exercise attire, but it worked for me and my very casual pace.  Besides, the lack of obvious running gear discourages getting over-enthusiastic and attempting to run any part of trail.  I might point out the use of the word “discourages” instead of “prevents”.

Three lingering effects of chemo made this a bit of an adventure.  For starters, I frequently feel cold unless I’m having a hot flash.  I felt very bundled up for being active in the woods on a 40 degree day, and yet still felt cold for quite some time after starting out.  Also, my eyes water and my nose (which I recently discovered doesn’t have any hair inside it anymore) drips in any air below room temperature.  I was already a quarter mile from the car when I discovered a serious shortage of nasal tissue.  Not off to the greatest start, and I seemed especially out of breath for my slow walk.

Then I realized that the trail was gradually going uphill, which partially explained the heavy breathing.  There were houses visible on either side of the trail at the start, but after crossing a gravel road it quickly became all woods.  Then the trail got steeper and went across the back edge of some open fields.  Following the trail required going through a couple of fence gates with signs asking hikers to close the gate behind them.  I’m pretty sure this meant I might come across domesticated animals of some form and was hoping they would be something friendlier than a bull.

Being on a hilltop near a field meant there were unexpectedly good views along the trail.

The further I got into the walk, the better I felt.  This is exceptionally good news.  For the last number of weeks I had been lamenting that exercise generally started off unpleasant, and quickly got more difficult.  Usually the hardest part of exercise is getting myself out the door, and once the body gets warmed up the going gets a lot easier.  That hasn’t been the case for the last couple of chemo cycles, but now in the past week it’s happened twice.  It feels like progress!

Now for the tricky part: Deciding when to turn around and head back to the car.  I had previously explored this part of the trail by parking slightly north of here and heading south, but turned around before reaching an obvious landmark like a road.  I was now parked to the south of this section and heading north and waiting for the trail to look familiar.  If I turn around too soon I’d leave part of the trail unexplored and unmapped.  Turn around too late and my body might decide it’s had enough exercise before arriving back at the car.  I felt good, so I pressed on.

The good news is that there was plenty of overlap with my previous exploration, and my body mostly held up though was feeling quite tired near the end.  At one point I did stop and lean against a tree to catch my breath while heading downhill.

I’m really out of shape, even when compared to my post surgery, post radiation, just before chemo self.  Today I’m feeling the effects of having done too much exercise yesterday, but those consequences aren’t nearly as severe as expected.  The trend now is one of improvement, and exercise is starting to feel good again.  The next milestone is to get back to where I was before chemo, and then continuing to recover from there.

Day 167, Happy Birthday Dad

I’ll get to the sundry details of the waning days of chemotherapy, including the fiasco of the flying fork, later on in this post.  First, I wanted to take a moment to remember my dad, who was born 92 years ago yesterday, and share a few notable and amusing things from his life.

Dad liked to fix things around the house and was fearless about it.  The earliest story of this goes way back before I was born, when he was still living with his parents.  It seems his parents bought a new couch, and many people commented how sitting on said couch gave the feeling that you were in danger of sliding off the couch.  One day, while everybody else was away, my dad “fixed” the couch problem by sawing off the back legs.  This did not go over well with his parents.

Dad was drafted at the end of World War 2, and if I remember the story correctly he did his basic training at Fort Devens in Massachusetts.  Like me, he was rather skinny in his younger days (not to imply he inherited said trait from me, rather it was the other way around), and apparently there was much humor in his attempting to march up a hill with a heavy flamethrower on his back.  The war ended while he was in training, but he was still deployed to Germany to be part of the occupation after the war.  His claim to fame there was pissing on Hitler’s grave, which apparently was the thing to do if you were deployed to Germany after the war.

One of dad’s hobbies was target shooting.  He was a lifetime member of the NRA and also a member of the Sikorsky rifle club.  I grew up shooting BB guns and air rifles in a modest target range he set up in the basement.  It was a completely different time.  There was a rifle range in the basement of my elementary school.  I grew up thinking of guns as tools and not weapons.

Dad could do lots of things around the house.  I consider myself somewhat of a  do-it-yourselfer, but I’m just a distant echo of what my dad could do.  When I was a boy and got my first train set, he built a table out of a 4x8 sheet of plywood for what was to become my expanding railroad empire.  What makes this notable is that he did it while his leg was in a cast.

Years later when I got into model airplanes, Dad looked at an advertisement for a field box, made a few measurements, and made an almost exact copy from scratch in his workshop.  While he also tried out model airplanes, after a few crashes he decided model sailboats were more his speed.  He did serve as my pit crew when I briefly dabbled in model airplane competitions, which is another very fond memory of mine.

And finally, my dad had a long and drawn out battle with bladder cancer. Though it never spread, it kept coming back over and over again.  Eventually his bladder was removed entirely, which cured the cancer completely but unfortunately set in motion a sequence of events which led to his death over a decade ago.

Yes, cancer.  Again.  It’s an unfortunate habit of this blog that everything eventually ties back into cancer.  Also unfortunate is I’ve taken the first step in my dad’s cancer footsteps and already had my first bladder procedure.  I don’t give the bladder cancer much mention because in the grand scheme of things, advanced prostate cancer is a much more immediate threat.

Which is saying something.  For years I’ve lived in fear of having inherited my dad’s propensity for bladder cancer.  The thought of regular cystoscopies (or as my uncle recently called it, “the poker up the pecker”) is not very appealing.  The thought of repeated surgical procedures and eventually having a urostomy bag is even worse.  Bladder cancer by itself is enough reason to be obsessive and worried about the future.  That I’ve spent very little time thinking about it over the past several months is quite notable.

I suppose there’s a lesson in there that no matter how fearsome the future possibilities are, they aren’t in the here and now and you always have the option of focusing on something else.  Unfortunately in my case that’s been prostate cancer.  My homework after this blog post to is to consider that perhaps I can focus on something besides prostate cancer for a while now that chemotherapy is winding down.

After a very brief hiatus, I’ve started running again, though with very frequent and prolonged walk breaks.  One of my preferred places to run during the winter is what is now called Devens.  Fort Devens has been downsized since WW2, and large portions of what used to be army base are now dedicated to housing and industrial use.  It’s a great place to run in the winter because the roads are wide and well plowed, so there’s plenty of shoulder to run on without the need to dive into the woods for every passing car.  I did a lot of my marathon training here back in 2011.  And of course, there’s additional sentimental value since my dad did his basic training here.

Getting back to my ongoing recovery from chemotherapy, it’s now two weeks after my last infusion, and yesterday was my last follow-up appointment.  As expected, my blood counts were at their lowest point.  In past cycles they’ve come roaring back in the third week, and there’s no reason to doubt they won’t do the same thing again.  I typically feel like I’m catching a cold this week, which is probably just the immune system coming back online and catching up with any viruses or bacteria that have been trying to move in.

I’m also seeing signs that my brain and nervous system aren’t terribly happy with chemo.  My fingertips have a bit of numbness, and to borrow a description from the internet it feels as if there’s tape on them.

I’ve also been more clumsy than usual, and have dropped countless forks and knives since chemo began.  This has been accompanied by the development of instinctively moving my bare feet out of the way of falling blades and tines, as it would be a rather unpleasant complication to have them land pointy bits first on my foot.  Once I tried to catch a falling fork and only managed to swat it in the general direction of my wife.  Sharing meals with me is more dangerous than you might expect.

My brain also has been having trouble recalling memories.  Yesterday it took longer than it should have to remember the name of my urologist.  I also have trouble with the names of medications I’m taking.  It’s not that I don’t remember, it’s that I can’t find the information in my brain.  My strength as a programmer has been the ability to quickly recall lots of obscure details.  It’s very handy when a customer using an old release reports a bug, as frequently off the top of my head I can say if it was fixed in a subsequent release, or point directly to the small bit of code in thousands of lines of source code that’s likely relevant to the problem.  Thus, it’s quite alarming for me to suddenly draw a blank when asked a question I should know the answer to.

Of course, all of this should resolve itself with time.  After all, if my immune system is at its lowest point right now, it’s reasonable fair to expect that many of the other side effects of chemotherapy are also at their peak.  Right now I’m in a period of sleeping a lot and waiting for things to run their natural course.  There’s also a fair amount of whining and grumbling, as if somehow I can speed up the waiting process.  I’m a patient with little patience.

It’s been quite a week.  I miss my dad terribly, and it’s worse when I remember him as a healthy and capable man.  I’m still dealing with side effects, as expected, but looking forward to going two whole weeks without seeing a doctor of any kind.  I am in nervous anticipation of finally having an extended period of recovery after nearly six months of being abused by surgery, radiation, and chemo.