Day 28, Poetic Torture and a Run

Let's start off with a quick recap.  In the last four weeks I've been diagnosed with two cancers (local bladder and advanced prostate), and have subsequently had hormone therapy, surgery, radiation, the catheter from hell, not to mention test after test and every doctor wants a vial of blood to check something or other.  Somehow I'm still surprised that this has left me fatigued, nauseous, and in pain.  On the bright side, I've easily lost 8 pounds without even trying.

Today's test was a bone scan.  It was poetic torture of a sort.  To understand why, you first must know what I do for a living.  I work in a machine vision company named Cognex and spent a significant portion of this year integrating a new 3D camera into our VisionPro software product.  This camera produces high resolution 3D images of a part by shining a laser stripe across the part and then using a sensor set at an angle to the laser to triangulate the 3D positions where the laser is illuminating the part.  To get a full 3D image, the part must be moved through the laser plane while the camera slowly builds up a 3D image slice by slice.  While it is extremely accurate, the need to move the part and take individual slices takes considerable time relative to other technologies.

In a similar fashion, the bone scan involved building up a model of my bones by taking individual slices as I was moved under the sensor at an excruciatingly slow speed.  I was told to breathe normally keep my fidgety body as still as possible while it took the image.  We're talking 30 minutes during which I'm not supposed to move.  That's a considerable amount of time to focus on how much one's ribs move up and down in normal breathing.  Does that still count as laying still?  Still there I was, a victim of the same relatively slow line scan imaging technology I work with for a living.

To add to the torture, before the scan I was injected with radioactive phosphorous and told to come back for the scan 3 hours later after it had a chance to absorb into my bones.  The cancer in my back causes pain if I sit too long.  So, figure an hour long car ride to the hospital, sitting in the waiting room, then a walk over to the local library to read and kill time while sitting, then back to the hospital cafeteria for a sit-down lunch, and more sitting back in the waiting room again.  My back started complaining so I improvised by laying down across some chairs:

Once again fighting cancer isn't always an exciting action movie, but more like a montage of what would otherwise be dull and boring scenes waiting for the next appointment or test.

That's enough about back pain and medical tests.  As I've committed to running a 5K on Thanksgiving day, after getting back home I forced myself out the door to do my first run in weeks.  I had a disparate set of goals:  Cover three miles, get acclimated to running in the cold, and get my heart rate up over 180 briefly.  The run was a success on all counts even if dreadfully slow.  My body simply does not respond well to time off from running, but should bounce back quickly if I get back out a couple times over the next week.  I'll still be slow from being out of shape and having low blood counts from the radiation treatment (I now have medical proof of that), but should be able to take maximum advantage of whatever fitness I do have, which isn't something I was able to do today.

The other reason that got me out for a run was yesterday's meeting with the onco.  He stressed that getting out of bed and off the couch improves my prognosis considerably.  When I mentioned that ibuprofen helps with the pain but may be causing digestive issues (mostly due to collateral damage from the radiation, but the ibuprofen seems to make it worse), he said to add Prilosec and keep taking the ibuprofen if it helps me keep moving.

So while I'm still in pain, the general trend is that I'm able to do more and more for the same amount of pain.  I'm almost back to where I was before all the treatments and surgery started.  Better yet, my latest PSA number is half what it was a month ago.  It all points to the cancer being slowly beat back even before chemotherapy begins.  The onco wants to give me a couple more weeks off before starting that, so I should be feeling pretty good before the next round of torture, which should be starting sometime in the first week of December.

Day 24, Life Part 3

October 19, 2018 was a day that changed my life forever.  It's when I got my cancer diagnosis and started hormone treatment.  It's not the first time my life changed drastically.

On May 19, 1989, I graduated college and moved to Massachusetts to begin my career.  The world opened up.  I was no longer the short and scrawny outsider that was bullied in school.  It was the end of part 1 of my life, and the beginning of part 2.

Now of course this transformation actually happened over a number of years while I was at college, but the ceremony and symbolism of graduation made it easy to pick that as the point when everything changed.  In a similar manner my cancer developed over time (but unknown to me), with a rather dramatic unveiling in the urologist's office, though happily not involving confetti, or the need to wear a cap and gown.

Life part 2 started off with some of the best years of my life.  I was making new friends in Massachusetts and hanging out with old friends from college.  I began dating as women finally seemed to take me seriously.  Yes you read that correctly: my first girlfriend didn't happen until after college graduation.  I got married, bought a house, then bought a Mustang.  I changed jobs twice and ended up in a good position in a good company.

And I lived happily ever after?  Not quite.  The big problem with life part 2 was the feeling that something better was always around the corner.  While this was generally true in my 20s, after a while things stopped getting better.  In reality, my parents and in-laws were aging and friends got busy with family responsibilities.

Now to go off on a tangent, here's a tip for all you guys out there:  When you observe that your life was on an upward trajectory until approximately the time you got married, do not state this verbally to your wife!  Correlation may not be causation but that doesn't keep you out of the doghouse.

It wasn't all downhill after my 20s.  I joined a running club, made new friends, and got to run the Boston marathon in 2011.  I've wanted to run a second marathon but the situation never seemed right.  I'd get injured during training and just think that next year would be better, as if there was an infinite supply of next years.

Living in life part 3 with cancer, there is no guaranteed "next year".  It's possible I'll continue to live for months, years, or even decades but I really just don't know and can't know.  If the cancer does get beat into remission (which I think is likely) I'll still have to undergo regular testing to see if it's making a return.  There will be side effects from treatment that may linger for months or years.  And of course, I'll still be subject to the normal processes of aging as all of us are.

Thus, the secret to life part 3 is embracing life in all its imperfections and focusing on the positive, the good, and the funny.

Today was the monthly brunch gathering of the running club.  Yesterday was a rough day for me, as everything I ate seemed to give me abdominal discomfort, which in a way was an improvement over having little interest in food.  However, the temptation to avoid a social activity centered around food was great.  In the past I would have noted that there will be another opportunity next month, so if this one isn't going the way I want I can try again later.  Not anymore.

Today also started off a little rough, but I went to the brunch anyway.  Happily my body responded to the challenge and the good weather, and I got a walk in (not quite recovered enough for running yet) and was able to have a modest amount of food and a cup of coffee without major problems.  While I may not have felt perfect, being surrounded by supportive friends was a great morale boost that I definitely needed.

After a little bit of peer pressure was applied I signed up for the Ayer 5K on Thanksgiving day.  It's a race I've run for over 10 years straight.  Unless my onco insists on starting my chemo a day or two before, 5K is a distance I know I can run/walk/crawl and still finish ahead of dozens of others even if I'm not having the best day.  I can almost guarantee that Thanksgiving won't be a perfect day, but I'm learning to look past that and see that it's likely to at least be a good day.

So in closing, it seems that fate decided that my life part 2 had to end suddenly.  I could just as easily have had a fatal car accident or a heart attack, and the tragedy would have been my sudden departure without a chance to fight.  It might be a morbid thought, but given a choice between sudden death and cancer I'll happy take the chance to fight on in part 3, and intend to savor every positive moment it allows.

Day 19, Bouncing Back

People warned me that fighting cancer would be a roller coaster ride.  When you consider that I'm normally a person of emotional extremes, calling this a roller coaster is an understatement.

Today was my last scheduled radiation treatment.  However, like last Tuesday the machine was down, and they weren't sure if they'd get it back online, but they'd know in about an hour.  Was this more bad luck?  Or just a transient hiccup?  Sometimes fighting cancer is as simple as staying calm and being patient (no pun intended).

It turns out it was a transient hiccup, and after my 5 minute treatment I literally jogged back into the waiting area as my form of taking a victory lap.  Not bad considering an hour earlier I had made an offhand comment about back pain and the uncomfortable chairs, and the staff happily found a gurney for me to lay down in and rest while waiting.  I felt obliged to mention that laying down in the gurney made my back much better and my pain can be very specific to what I'm doing.  Walking typically isn't a problem, while bending over to feed the cat can be excruciating.  The cat has no sympathy however, and thought I was just being the biggest tease when I very carefully and slowly bent at the knees instead of the back before dumping his breakfast into his bowl.

Part of my improved mood today is due to better management of symptoms.  Yesterday I met with the radiation doc and mentioned my pain and nausea.  I came away with a script for the nausea which helps greatly and a better plan for pain management.

There's basically 4 options for pain management each with their own downside:

• Tylenol, which can cause liver damage if you take just a little more than the recommended daily maximum.
• NSAIDs (aspirin, ibuprofen, etc.), which can cause bleeding and thus are bad after surgery.
• Steroid anti-inflammatories, which suppress the immune system, and besides I'll be getting plenty of that when starting chemo.
• Vicodin, see "opioid crisis".

The doctor convinced me that Vicodin is a good choice, as my use will be short term and he hasn't seen problems with cancer patients wanting to stay on the drug.  Besides, ibuprofen will become an option again soon enough, and if the radiation treatments work I won't need much if any pain management.  That said, I'm only taking the Vicodin at night, which means I can use more of my daily allowance of Tylenol during waking hours.  (important side note: Vicodin actually contains some Tylenol, so when employing a strategy like this you have to count all medications which include Tylenol against the daily limit)

Great, so symptoms are under control and radiation treatments are completed.  My mood and optimism are greatly influenced by how I feel.  Generally speaking, if I'm not in pain and able to go for a run, how sick can I really be?  It also helps that last night as I slept I dreamed of playing ultimate Frisbee.

Also of note, I voted today!  Some call it a civic duty, I called it a good reason to shower and get out of the house for something other than medical reasons.

Next up is to see the urologist on Thursday about the catheter.  It's an ongoing annoyance, but not nearly as annoying as urinary retention.  For the time being I'm happy to count the catheter as part of my penis length and will note that it hangs nearly to my knees.  Good luck getting that image out of your head!

Assuming I can lose the catheter on Thursday, I'll have almost a week of "time off" before meeting the medical oncologist to talk about starting chemo.  That's my window to get back to daily walks, focusing on eating healthier, and generally getting rested and ready for the next battle.

Day 17, A Week of Setbacks

At the end of a rough week, I am in a dark place right now.  In my last post, a polyp in my bladder was described as "little more than a speed bump in the grand scheme of themes".  While that is still generally true, there have been some complications.  Suffice to say that in a span of 48 hours I had to seek urgent medical care twice just to take a piss.

The first hiccup of the week was when my first radiation appointment, scheduled for Tuesday, got cancelled when the machine broke down.  That meant my first radiation treatment wasn't until Wednesday, just a couple hours before surgery for the polyp.

The surgery itself went well enough.  I was put under general anesthesia, and then all sorts of equipment was shoved into my penis, up the urethra, and into the bladder to remove two growths, followed by a catheter to fill the bladder with a chemotherapy solution and hold it there for 30 minutes while I was in recovery.  The main points here are that there is anesthesia, as well as incisions inside the bladder and some amount of wear and tear to the urethra to recover from.

There were two decisions made after surgery that in hindsight turned out to be poor decisions.  The first was the decision to remove the catheter used to fill and then drain the chemotherapy solution from my bladder.  The second was to send me home after only passing a small amount of bloody urine, despite my protestations that it seemed as if something was preventing me evacuating normally.  Apparently this is a common post-surgical complaint, and most of the time it turns out to be a false sensation.

In my case, it was a real sensation.  After a 90 minute ride home including a stop at the drug store to fill some post-op prescriptions, I was feeling every pothole in the last several miles.  But I still wasn't able to pass more than a few drops at a time.  A call back to the hospital netted the suggestion to have a cup of tea and use a heating pad near the bladder to trigger the urination reflex, and if that didn't work by midnight go to a nearby ER.  Of course, the tea did little more than provide more fluid to fill the bladder and up the urgency.

It became exceptionally painful, even though I was on a prescription pain reliever.  The bladder hurt because it was distended and had just had growths removed.  What did pass caused extreme pain in the irritated urethra.  By the time midnight rolled around, I was screaming in pain with each unsuccessful attempt.  There was a brief flash of hope when more than a few drops came out, but that effort couldn't be repeated.

So off to the ER at half past midnight, and I walked in with my hand cradling my much abused and hurting penis and lower abdomen.  At this point all thoughts of being a strong person had left me.  I simply didn't want "urinary retention" as my cause of death.

So to make a long painful story a tad bit shorter, they eventually got a catheter put into me on the second attempt.  The first attempt was excruciating.  The second one with a different catheter even more so.  I was exhausted and in agony and had given up all self respect and freely screamed in pain throughout this procedure.  It is easily the most pain I have felt in my entire life.

Happily, after about a quart of fluid was drained the pain had largely gone away and I was sent home with a catheter into my bladder and a baggie strapped to my leg.  Unfortunately that catheter clogged on Friday morning.  At least that was during normal business hours so off to the urologist for an urgent appointment.

At the urologist, after another several hours with a very uncomfortably full bladder, the plan was to estimate the amount of urine in my bladder using an ultrasound like machine, then remove the catheter and see how much I could void naturally.  Of course, with the luck I'm having this week the batteries in the machine died so the nurse had to go fetch a fresh set.

The estimate was 650 cc, and I naturally passed maybe 50 of that.  Shit.  Hello catheter number three.  The good news is that my pain levels were much lower, so I was able to deal with it using deep breaths and trying to relax, and no screaming was involved.  The urologist didn't have great things to say about the configuration the ER had left me with, and instead of a bag he put a valve on the end which makes life with the catheter much simpler.

What's troubling is the urologist doesn't know why I'm not able to piss naturally.  It could be inflammation and swelling in the bladder, as the growths were near the bottom where it necks down into the urethra.  It could also be nerve damage due to the metastasis in my spine.  It's hard to tell since the surgery and the first radiation treatment were so close together.  We'll re-evaluate the situation next week after finishing the radiation treatments, and if needed there are less extreme options than a full catheter.

While this was going on I had three radiation treatments.  In addition, the third front of this cancer war is the hormone therapy injection I was given a little over two weeks ago, which should be starting to take effect now.  All of these things can cause side effects such as fatigue and nausea, so it's no surprise I've spent most of the last couple days laying around on the couch or in bed feeling sick to my stomach.  That is, when I'm not in a complete panic about my ability to urinate.

Which brings us to today.  Much of the past week has gone by in a haze of stress or napping (sometimes aided by a prescription opioid).  Today I've recovered enough to occasionally get off the couch for 30 to 60 minutes at a time, including writing this post.  The emotions are starting to hit me.

Last Tuesday, before this latest skirmish in the cancer war, I was able to go on a 2 mile walk and haul a load of trash and recyclables to the town dump.  I could go out to a restaurant for lunch.  I could travel to Vermont and at least enjoy the scenery and maybe even an easy stroll by the pond.

Today, I've got a catheter hanging out of my wanker that tends to chafe and irritate me with any significant movement.  My back pain seems to be flaring up as a result of the radiation treatments.  I sleep for about 12 hours a day, lay around most of the other 12, have little interest in food, and generally worry about whether the current catheter will continue to function.

At some level, this is all perfectly expected after what I've been through in the past week.  But on the other hand, I still have two more radiation treatments, then a short break, and then chemo begins.  The though that I'll be stuck in this loop of sleeping, pain, and nausea for weeks scares me deeply.

As the saying goes "If you're going through hell, keep going", and I'm clinging desperately to the hope that eventually I will emerge on the other side.  It's just that after a week where every light at the end of the tunnel seems to be an oncoming train, it's very difficult.

As always, the silver lining is the love and support I have received.  Please continue sending the thoughts, prayers, hugs, care packages, well wishes, whatever you can do.  It seems I'll need them in increasing amounts in the coming weeks.

Day 11, Much Mixed News

Just a quick dump of of the latest developments, without much wordsmithing or looking for the sliver lining, because there is a lot going on.  Today started off with an 8am cystoscopy, which involves inserting a scope into the bladder to have a look around through the only way in: the "urethra", which I put in quotes because I'm using it as a euphemism for the most personal part of a man's anatomy.

And despite the use of a "numbing agent", this HURT!, not unlike a hot knife being inserted.  I screamed out in pain like a little kid.  My wife in the waiting room heard me.  I'm sure everybody in the office heard it.  The doctor described my "urethra" as "a little sensitive".  No shit!

The result of this was the finding of a polyp in the bladder, which is probably cancer unrelated to the prostate cancer.  Great!  But this is little more than a speed bump in the grand scheme of things.  Wednesday I'll go in for an outpatient operation which will remove the polyp and fill my bladder with a chemotherapy fluid to prevent recurrence.  This is highly routine and low risk.  The only concerning thing is that my dad had this exact same procedure about a dozen times because it kept recurring no matter what they tried to stop it.  We won't think about that right now.

The biopsy and MRI results were also discussed.  Yes, it is cancer, and yes, it is aggressive.  But the cancer was only in half of the prostate, which means it didn't spend long there before spreading to other parts of the body.  Generally, the urologist thought this was better news than he was expecting.

So from there off to the radiation oncologist.  We'll ignore the bit about this doctor being a bit more straight spoken with zero tendency to sugar coat things.  But his role in my treatment will be limited.  Starting tomorrow and for the next 5 days I'll be getting beam radiation treatment aimed at addressing the sources of pain which hopefully will get me moving around easier.  This nuclear attack is just the opening salvo focused on the problematic metastases.  The system wide chemical attack will come after.

On Wednesday morning, I'll be meeting with the medical oncologist.  This is the doctor which will likely prescribe chemotherapy, and this will be the cornerstone of my treatment.  In fact, the radiation oncologist's urgency to get me into treatment quickly was so he could "get out of the way" of the chemotherapy he expects is coming.

Despite the radiation oncologist's rather pessimistic demeanor, he did say that the field of chemotherapy is exploding with new options.  Dawne also pointed out that even though he spoke in terms of "extending life" and not "cure", that extension provides more time for better treatments to become available.

So if you've been keeping track of this all, you'll notice that Wednesday will be a packed day of meeting the medical oncologist, getting a radiation treatment, and finally surgery for the bladder polyp.  Of course, the surgery means I can't have food after midnight, so I'll be starving through all of that.  If this doesn't count as an all out assault on cancer, I don't know what does.

So hopefully by next week I'll be feeling less pain, just in time to go onto chemotherapy and probably be sick to my stomach and lose my hair, so I got that goin' for me (to make a Caddyshack reference).  Stay tuned!

The Painful Post

It's been almost a week since my last post and there's not much news to report.  No test results, no update on a treatment plan, and generally no drastic change in symptoms.  So I'll use this opportunity to go into some detail on the symptom that's causing me the most grief: pain.

For several weeks now I've been dealing with a pain that can be approximately described as if my back has gone out.  It hurts to sit.  It sometimes hurts to roll over in bed.  If I move wrong, such as bending over to spit my toothpaste into the sink, it can feel like a knife being stuck in my back.  All that said, I've also managed to carry the window A/C unit down two flights of stairs and go on a 4 mile run so not all activities cause pain, at least if I don't overdo them.

Ibuprofen and/or acetaminophen help, but bring up the prospect of doing too much, and being in a world of hurt when they wear off.  Last night when I tried to go to bed I had severe pain from my back all the way down my right leg to the foot.  That strongly implies a nerve is getting pinched somewhere.

This pain is best explained by the CT scan results.  I had mentioned earlier that my cancer has spread.  Let me see if I can tell you the bad news in a good way:

Imagine you're watching a cheesy animated high school science film about prostate cancer.  The tumor is depicted as a busy bustling city in the prostate.  There's lots of animated anthropomorphic cancer cells.  Most have that silly happy grin that cartoon characters like to have.  However a few are sad, and becoming disenchanted with city life, so they pack up their suitcases and decide to go on a cruise.

There are only a handful of cruise ships to choose from and they sail the bloodstream and lymphatic system to a relatively small number of destinations.  These vacationing bastards decides to move to my vertebrae, where they proceed to interfere with the normal turnover of bone tissue.  This can have all the expected effects of pain, inflammation, and pinching of nerves.

The point of this silly analogy is that while prostate cancer can spread, it usually spreads to very specific spots, and my CT scan was consistent with this.  There are bone lesions in my hip and back, and apparently one very swollen lymph node (assuming I understand the medical jargon in the summary).  This explains the pain I have and continue to feel.

And now the tricky part: viewing this revelation as a good thing.  My advanced cancer wasn't caused by the CT scan, though honestly it feels that way much of the time.  It's just never easy to find out that your most hypochondriac thoughts weren't anxiety, but were actually a pretty accurate assessment.

So here's the interesting thing that I didn't know before: Prostate cancer in the bone isn't bone cancer, it's still prostate cancer.  This means it's still affected by any treatment that targets prostate cancer.  For example, denying testosterone will stunt the growth of the cancer cells, and I've already had an injection of Eligard that will do just that.  There are also radiation treatments that selectively seek out the weakened areas of bone where the cancer is located, and I'm hoping the oncologist will agree that that's a good option for me.

So now those vacationing cancer cells have arrived at their vacation destination to find they're no longer in a cheesy science film, but in a cruel Monty Python animation.  There's no food at the destination, and a bright sun radiating down on them, and gosh darn it they forgot their sunscreen.  They're starving, listless, and sunburnt.  Suffer and die you little assholes.  May you be squashed by a big bare foot descending from the top of the screen.

Obviously, I've been doing some research on the web about my condition.  It's a difficult balancing act.  It's very easy to have a positive attitude if I'm not reading about cancer and not having any observable symptoms.  It's diabolically difficult when it hurts to simply sit in a chair, and I'm reading about how easy it can be to actually die from this, and how unpleasant the treatments can be.

It's important to do research to understand the disease, what's happening to me, and what are the options for fixing it.  But it can also be extremely depressing and stressful.  So many people have reached out to me to offer their support.  Please please please continue to do this!  Get ready for a long drawn out fight.  Be ready for me to withdraw into myself at times and when I do, slap me out of it.

There is much reason for hope!  The CT scan notes that the vital organs in my abdomen are normal.  To my mind, this means the cancer hasn't moved into any areas that will immediately kill me.  It also means my kidney and liver are up to the task of dealing with the treatment regimen (they have to break down and eliminate the drugs after they've done their job).  I'm also starting out with strong bones and a reasonable amount of lean mass and fat mass.  In short, I am strong where I need to be to withstand treatment.

Let's beat this!

A Hero Emerges

Grrr I hate cancer, I just want to grab my chainsaw and go running after cancer cells and cut them up like Ash going after the Evil Dead.  Not quite a practical idea, but it is the image I want to have in my head, and it's a great excuse for a campy photo opportunity:

It's super easy to be worried right now.  I've been given a diagnosis but have to wait my turn to see the oncologist before the heavy artillery can come to my rescue.  What can I do in the meantime to fight the battle against this aggressive and vile enemy inside me?  It turns out there's a number of things.

For starters, I can share my story and reach out to others for help and support.  This has worked wonderfully.  I've received so much love, support, advice, and general well wishes that I am in awe.  It also led to a wonderful phone call this morning with "Coach Jeff", a stage 4 prostate cancer survivor who has completed two ironman triathlons since his diagnosis 4 years ago.  He is living proof that people with late stage cancer can beat back the disease and thrive.  I'm finding other survivors to use as a source of knowledge and inspiration as well, but when one is both an ironman and a late stage cancer survivor, you gotta call them out by name.

The next thing I can do is eat healthier.  Rumor has it that cancer cells rely on sugar to survive.  Of course, the rest of the body needs some to survive as well, but excess sugar makes life easier for the cancer cells and makes life harder for the normal cells as they struggle to cope with the excess nutrition.  So, less sugar, cut out the dairy, less processed foods, more plants and less animals, and the balance of power should shift to the healthy cells.  It's not a cure for cancer by any means, but it does put a finger on the scale in favor of recovery.  It's also an excuse to post a picture of last night's dinner, salmon with raw veggies and quinoa:

But wait a minute.  That would also mean no bowl of chocolate ice cream sundae while lounging in front of the TV.  Man this cancer thing does suck!  What a crappy disease!  Truth is I've been wanting to eat better for a long time, but faster running times aren't as compelling a reason as simple survival.

Next, I can spend more time resting, relaxing, and even napping.  The immune system can go after and attack cancer cells (though it's not clear if they use chainsaws to do so), but if I'm stressed and sleep deprived, my immune system won't be up for the job.  Like diet, this won't cure cancer on its own but it's another finger on the scale.  So here is what a hero fighting cancer actually looks like:

Not as exciting as running around with a chainsaw, but trust me, that's what I dream of when asleep.

And finally, the one universal bit of advice I've been given is to keep a positive attitude!  I've had my dark moments, but right now I'm totally pumped.  Writing this blog post required me to put thought into what I can do to fight the battle in this very moment, instead of anxiously waiting for the next doctor's appointment.  I'm writing it because people are interested in my story.  Thus, your interest and support are inspiring me to do everything I can to beat this disease.  I am standing on your shoulders.  Thank you!