Tom vs "The Pain"

For those that have been following my story and were left hanging by my previous post, my cystoscopy went well and once again my bladder checked out all clear.  This means I get to go until early October without a doctor looking for problems.  Treatments continue to work and it's time to continue to go about the business of living life.

This is actually very difficult to do.  In mathematical terms, "Cancer Diagnosis" + "Internet Access" = "Paranoid Hypochondriac".  Every little ache and pain must be the cancer coming back... I must do everything to fight my disease... I'd eat a tree if it would cure me...  I should be spending each waking moment figuring out which tree to eat to fight cancer. (side note: the chemo I received was a synthetic version of a compound from a yew tree) And then an epiphany occurred.

Avoiding death is no way to live a life.  Setting goals, exploring one's limits, growing as a person, helping others, loving, laughing, crying.  That's what life is all about.

So far I've tried to be audacious in my goal setting.  Get my PSA to undetectable, check!  Run a 30 minute 5K, check!  Hmm, those weren't nearly as hard as I imagined.  In an attempt to be even more audacious, I recently signed up for the Baystate half marathon on October 20th.

Ten years ago Baystate was my first ever half marathon.  October 20th will be a year and a day after my diagnosis.  What better way to celebrate a year of surviving cancer than to retrace my steps as a new runner a decade ago?

In the time since first thinking of a fall half marathon, it's gone from seeming challenging, to being a slam dunk, and back to being a challenge.  It all has to do with how my body is feeling from week to week, and right now I have "the pain".

The pain is my frequently sore sacroiliac joint.  It's also an area that still showed activity on my latest bone scan.  Could be cancer, could be overuse and arthritis (which could show up in a bone scan), or maybe some combination of both.  There's no way to say for sure without a biopsy.  In the meantime, the formula is now "Cancer Diagnosis" + "Internet Access" + "Non-specific symptoms" = "Anxiety" + "Paranoid Hypochondriac".

To provide some perspective, the only time in the past year when I've been completely free of "the pain" was about a two week window around the end of June.  This also corresponds to a time when I went six weeks between bone strengthening shots that are normally given every four weeks.  Hmmm.  This is also a very common problem in runners, and given the mileage I've been running it's somewhat amazing that a known weak spot hasn't been giving me more trouble.

The reasonable thing to do would be to take my running down a notch and focus on strengthening the muscles that support the joint.  Fewer miles, slower pace, and some key body weight exercises.  That would be the reasonable thing.  So of course when "the pain" was near its peak I went out and ran another 5K.  In deference to the pain, I didn't give it a 100% effort and still ended up with my second fastest 5K this year, and still faster than any I ran at age 40.  I'm not exactly debilitated by the pain.

Since that 5K, I have been a bit better about sticking to the run less and strengthen more plan, and so far results are encouraging.  I'm much more comfortable today.  Also interesting is that the humidity is lower today and it's now been two weeks since my most recent bone shot (for my regular readers, this is the substance made in genetically engineered hamster ovaries).

So I'm still well on track to pull off a half marathon in October, but my A goal of beating my time from 10 years ago is in jeopardy.  Of course, it being an A goal means it should be difficult to achieve.  I also have B and C goals, which still seem reasonable.

Of course, if I still have the pain in another six weeks at my next oncology appointment, I will mention it, and most likely he will consider my blood work and my running mileage and not order any scans or biopsies to investigate further (assuming said blood work doesn't have any evidence to support my paranoia).  My pain and paranoia has so far been an extremely poor predictor of the state of my cancer.

Beyond that, my body is still changing.  I'm probably still recovering from chemo and radiation, and still adjusting to the lack of hormones.  Hot flashes have picked up in intensity since returning to work, and that's probably due to a combination of hotter weather and an increase in caffeine intake.  My hair is growing back with newfound curliness and more unmanageable than ever.  I'm still losing weight and what muscles I did have are being covered by a layer of fat.  Through all of this, people regularly come up to me and say something along the lines of "wow, you look amazingly healthy, I heard that you're cured".

Nope, not cured.  Still on treatment to suppress testosterone and that is continuing to work by all objective measures.  In the grand scheme of things I am doing amazingly well and am very thankful and happy to be alive and enjoying life.  Life is good!  That doesn't mean I'm not dealing with some profound changes in my body and in my mind, and also the anxieties and paranoia that seem to affect all cancer patients.

But still, life is good, and I'm going to run another half marathon!  Continuing to retrace my steps as a younger runner would lead to running the Boston marathon in 2021.  I could run for charity!  Raising money for charity scares me more than running the marathon.  Hey look, an audacious goal that requires personal growth to reach!  This is living life!

Day 294, Victories and Panic

First a large bit of good news.  I've been doing very well and have had a series of victories in the form of returning to work, taking part occasionally in a local weekly 5K series, and generally living what feels like a normal life.  In recent weeks, advanced cancer has been little more than a nuisance and a good reason not to neglect my exercise and rest.

From all I've read online, life with cancer isn't supposed to be this way.  Many people report that it took them a full year to recover from the effects of chemotherapy.  Anti-androgen therapy for prostate cancer leaves many men severely fatigued and with muscle wastage, various aches and pains, and osteoporosis.  I do experience some of those effects, but..

...my running performances have shown that once the adrenaline and endorphins get flowing, all those symptoms fade into the background.  I'm running better now than I did at any time in 2018, and I'm starting eclipse running performances going back five years.  My 5Ks are not leisurely jogs where I'm just happy to be alive and finishing.  I'm going as hard as I can with my lungs burning, my legs aching, my heart trying to jump out of my chest, and yet I still have something left for a spirited sprint to the finish, especially if there's another runner ahead I can pass at the finish.

In my last outing I finished 98 out of 202 runners overall.  Let me clarify that this was at a weekly race series in Massachusetts.  Being the home of the Boston Marathon, Massachusetts is a very competitive area to be running in.  Many local runners use small local races like this as a way to work some speed work into their marathon training.  I just finished midpack in a field of serious local runners, and I'm going to go out on a limb and guess most haven't had any surgery, radiation, chemotherapy, or androgen suppression therapy in the past year, let alone all four.

Yes I'm damn cocky and bragging all I can about it.  In an online cancer forum some have even described me as hyper-optimistic.  I'm slowly and intentionally trying to change this bluster and bragging into a message that a serious cancer diagnosis does not necessarily mean life as you knew it is over.  There will be necessary changes, but it is possible that treatment will work and you can do many of the same things you used to do.  I am a living example of cancer treatment success.  Except...

... there is that matter of my "bonus cancer".  While my very life is most threatened by metastasized prostate cancer, and it's deservedly been the focus of much of my treatments and writings, it is also true that I was also diagnosed with bladder cancer.  Bladder cancer was the reason I had surgery which led to a week of hell with a catheter and urinary retention.

Later today I'll be going to the urologist for my nine month follow-up check to see if the bladder cancer has come back, and frankly, I'm in a total panic.  Now that my prostate cancer is under control, it's like I woke up this week and realized "oh shit! I have bladder cancer!"  The bladder cancer is not any immediate and direct threat to my life, but a recurrence could certainly derail the happy train I've been riding for the past several months.

So I finally did some long overdue research into bladder cancer, and found that there is a roughly 50% chance it will come back within 5 years, and as is usually the case with cancers, many of those recurrences happen within the first year.  The interesting thing is that if it does come back, then it's very likely to come back again, and again, and again, just like what happened with my dad.  It turns out he wasn't quite the statistical outlier we thought he was.

I'm trying my best to focus on the more likely possibility that I'll get a clean report, and that in turn will mean an increased likelihood that it will never come back.  Interestingly, there is reason to believe that the systemic treatments for the prostate cancer may also keep the bladder cancer away, but of course there's never been any clinical study of the sort.  For better or worse, medical science likes to focus on individual cancers.

Yet it's so very hard not to think of what a recurrence would mean:  Another surgery.  Another insult to my body that it has to recover from.  Possibly another week with a catheter.  A very increased chance that this will become a routine problem happening every 6-12 months.  While prostate cancer threatens my life, the bladder cancer threatens my lifestyle, and that is actually the scarier prospect.  It would take the narrative I've been building and rip that to shreds.

Today is not just another day.  In a little over 6 hours I'll know if my bladder is clear and I can go back to the mostly normal life I've fought so hard to reclaim.  It's analogous to waiting to find out if you've been accepted to that elite college, or whether you'll get an offer for that dream job you just interviewed for.  It's a day that will have profound implications for my life going forward, and as a cancer patient these days happen several times a year.

A relevant observation: If I was truly living each day as if it might be my last, I wouldn't be going to the doctor.  Seeking medical treatment, and in particular going to appointments where the whole purpose of the visit is to go looking for problems, implies an assumption that there will be a number of tomorrows.  The fact that I'm suddenly so worried about bladder cancer recurrence, whereas the previous checks were mostly footnotes, actually means that prostate cancer treatment is going very well.

Two odd thoughts in closing:  I could have waited to post this until after I knew the answer, but from a story telling standpoint the drama of not knowing feels far more interesting.  Also, I really have to synchronize my urology and oncology appointments so that my routine checks are close together in a sort of "finals week".  It's more efficient to panic about two things at the same time.