The October Roller Coaster

 I wish I could go back a week or two in time and talk to myself.  I’d say don’t get too caught up in the hysterical crying and negative thinking.  You (or should it be “I” when talking to my past self?) will be enjoying more nights at our getaway in Vermont even though it honestly felt at the time that that ship had sailed.

I’m actually writing this post in Vermont, warming myself by the wood stove with the occasional soothing sound of rain on the uninsulated roof.  I’m waiting for my painkillers to kick in so I can be fully comfortable sitting, but that hasn’t stopped me from carrying a couple loads of firewood up from the basement.

To be sure, the month of October has been a bumpy ride.  It started with a scan at the end of September that showed progression of my neuroendocrine prostate cancer.  This isn’t particularly happy news.  I’ve heard of a number of cases where men with neuroendocrine prostate cancer have progressed after platinum chemotherapy, and the the majority of those men are now dead.

So naturally, I assumed this was the beginning of the end.  It’s not that I’m out of treatment options, as there are many to choose from.  But it is time for my doctors to think “out of the box”, and I mistakenly thought this would mean treatments with severe side effects and little chance of long term success.

Yet here I find myself today, having started a different chemotherapy drug, cabazitaxel, last week.  I am decidedly more functional and more levels above simply being “not dead” than I ever imagined possible.  At my follow-up visit earlier this week, the nurse practitioner assured me that my fears of an imminent death are largely unfounded.  She and my oncologist both seem very hopeful of finding a treatment to beat the cancer back again, and would like me to stay focused on that.

It should be noted that in addition to starting cabazitaxel, I’ve stopped taking abiraterone and it’s companion prednisone, and I no longer receive atezolizumab infusions.  So another way to describe my situation is that I’m currently on fewer drugs and in what is apparently a surprise to me, experiencing fewer side effects as a result.

Let’s go back about 10 days, to when my wife and I took a day trip to Vermont.  In retrospect, I have a pretty good theory as to why it felt like a disaster.  Firstly, I was tapering off prednisone and my body was experiencing withdrawal.  Secondly, after stopping Abiraterone my “normal” prostate cancer was waking up resulting in unexpectedly severe rib pain and a corresponding spike in my PSA blood test.  Finally, the trip was two days after a liver biopsy, and the day before my first cabazitaxel infusion.  My wife was driving, and I was in the passenger seat with rib pain that was breaking through a combination of ibuprofen, tylenol, and oxycodone.  On top of all that, I got really nauseous on a curvy section of rural road and had to ask her to pull the car over.  I didn’t toss cookies, but it was close.

Given how I was feeling on that day, is it any wonder that I expected chemotherapy to make me feel even worse?  That trip felt like I was saying farewell to our Vermont property, because obviously chemo would make things even worse while not producing any beneficial results, and life would go further downhill from from that unexpectedly bad day.

I was wrong.  It’s too soon to say if cabazitaxel is working or not yet, but excepting the first few days the side effects aren’t nearly as bad as I was expecting.  In addition, being off of abiraterone and atezolizumab, slowing my prednisone taper, and having had my urinary stent removed a few weeks ago have all improved my quality of life.  My rib pain has stabilized or even subsided since my first infusion, which may indicate that cabazitaxel is at least working on the cancer in my bones.

It’s almost enough to give me hope.  But I had high hopes that abiraterone would control my cancer for at least five years, and those hopes were crushed.  Then I had hoped that atezolizumab would keep the beast at bay until at least late 2021, and that hope was crushed.  These weren’t arbitrary hopes, but were based on median time to progression in clinical trials.  Now there’s little data to go on, and I’m afraid of getting my hopes too high only to have them crushed again.

I’m finally learning to live one day at a time and maybe the doctors will find a treatment plan that will control my cancer for some unknown length of time.  While the doctors do their job, my job is to keep my spirits up and my body as healthy as possible to withstand the rigors of cancer treatment.

Let’s go back to the day before my biopsy, when my wife and I celebrated our 25th wedding anniversary with a scenic drive around New Hampshire and a short hike at Chesterfield Gorge.  We’ve driven by the gorge for decades on our way to and from Vermont, but never stopped to investigate. As our anniversary was on a Wednesday, I’d normally be at work.  Without cancer, we’d drive to Vermont for the weekend where I’d go out on an epic 10 mile run/walk/hike hybrid, and then we’d celebrate our anniversary with a dinner out.

But because of cancer my wife and I are now spending more time together than we ever have, and since the gorge was closer than Vermont it made for a great destination that was close enough where I could confidently drive my Mustang without fear of getting saddle sore.

The weather couldn’t have been better.  There were several places along the path where you could sit and admire the water flowing down some steep rocks.  When I run or walk, it’s almost always like I’m training for a marathon.  The idea of walking for a bit, sitting in the woods, then walking some more is my wife’s specialty, and something that would be beneficial for me to learn.  In addition to the stream, there was a steady rain of yellow leaves falling off the trees.

On the way home we drove past some pastureland with a really nice view of the distant foliage covered hills on one side, and a barn full of cows on the other side.  I’d alternate saying “Oooh!” at the scenery while looking left, then turn my head to the right and say “Mooo!” at the cows, then “Oooh!” at the scenery to the left, and again “Moop!” to the cows.  Even with cancer and a biopsy scheduled for the next day, I can be an especially silly person.

Our anniversary was different because of cancer.  Not necessarily better or worse, just different.  It’s not what we would have planned a year ago, but given the new realities we were able to take advantage of the weather and what health I had on that day and make the day enjoyable for both of us.

Speaking of the biopsy, that was an eye opening experience.  I turned the day into an experiment.  They saying goes “make the most of each day”, but how do you make the most of having needles shoved into your liver under conscious sedation?  I simply chose to be as silly as possible for the day and observed what happened.

It turned out to be a great day.  Partly this was because I was talking with many nurses and a few doctors, and any social interaction feels good during a pandemic.  But it wasn’t just me that felt better.  I was able to get at least a giggle out of most people I spoke with that day.  At one point, the unseen patient behind the curtain in the next bed over laughed out loud at my extremely lame ultrasound joke (“Is it a boy or a girl?”).  And I know she was laughing at my joke, because she specifically said so.

During the procedure, I was minimally sedated, and asking a ton of questions like a curious child.  I guess that didn’t bother the doctors because they never gave a nod to the nurse to increase my sedation.  They stuck four needles into my liver, and I only had mild pain on the last one as the fentanyl was wearing off.

After the procedure, when I got back to the recovery area, the nurse asked if I wanted anything to drink.  I asked for a martini, and without missing a beat she said martini day was yesterday, and would I like a ginger ale instead.  She later said she really enjoys patients she can joke around with.

I suspect I’ll look back at that liver biopsy as the day my life changed forever.  Perhaps it will be because the biopsy results pointed me at a new treatment that cures my cancer, but even if that’s the case, it will also be the day that I proved to myself that attitude is everything.  Attitude most likely will not cure my disease, but it will make living with it so much more enjoyable.  There’s no law that says you have to be grumpy just because you have an incurable disease.

I still expect to have bad days.  It’s a natural part of living with cancer, particularly when things are changing unexpectedly for the worse, and new pains and problems have to be dealt with.  It’s also natural for me as a person to have wild swings in emotion from day to day.  But, I see no benefit in feeding the negative feelings and encouraging bad days.  I’m still here warming myself by the wood stove while the cat hunts mice in the basement.  Despite the cold rain, I’m pretty sure I’ll bundle up later today and go outside for a walk in the woods, because the peace and privacy that’s available just outside our door here is irresistible.

Meanwhile, in the next week a horrific number of lives will be cut unexpectedly short due to Covid-19, or car crashes, or a bizarre accident with a ladder and a sex toy.  (as an aside, I mentioned the previous sentence to my wife, and she concurred that it probably will happen due to bored people stuck at home for far too long)  In honor of those lost so suddenly and unexpectedly, I’ll try my best to make the most of each day, even if it involves needles being stuck into my liver, my chemo port, or on a really challenging day, a cystoscope in my penis.

If there are lessons to be learned here, the first is that you never know what tomorrow might bring.  For me, the last two years have been chock full of unexpected tomorrows, both good and bad.  The other lesson is rather Buddhist and flows out of the first lesson: Don’t cling to your expectations, hopes, and fears of what tomorrow will bring.  In practical terms for me personally, I can get very upset when I cling to my dreams of running a marathon or spending time in the woods of Vermont.  I don’t know if I will eventually run another marathon, or even a half marathon.  All I can do is focus on today and do whatever my body allows to stay fit and work towards that goal.  Clinging to fears is equally problematic as I attest to from recent personal experience.  I cried my eyes out thinking I’d never spend another night in Vermont.  Now, not even two weeks later, I woke up in Vermont and realized what an absolute waste of emotional energy that was.

If you ask me what lies ahead in the year 2021, my official answer is “don’t know and don’t care”, and I’m much happier for thinking that way.