Joe and I have followed very similar roads. We both were diagnosed in October 2018 and responded well to treatment. But for both of us, things started going downhill again in late 2019. In January we both were diagnosed with neuroendocrine prostate cancer and in both cases it was interfering with the ability of urine to flow freely from the kidneys.
This is where our stories diverge. I had a urinary stent placed, kidney function was maintained and even improved somewhat, and chemotherapy was started. Joe wasn’t so lucky. The doctors were unable to place a stent in him, so he ended up with a double nephrostomy. That is, tubes were placed into the kidneys that allowed them to drain into bags external to the body, one for each kidney.
Joe’s kidney function never recovered to the point where the doctors felt it was safe to proceed with chemo, and Joe passed away in late March. I never knew Joe, but his story has affected me greatly. I’m sad every time a brother in the prostate cancer battle passes on. When somebody has a story similar to mine, it hits that much harder.
Neuroendocrine prostate cancer (also referred to as small cell) is especially difficult. It’s exceptionally rare. Advanced prostate cancer is a rare subset of all prostate cancers, and neuroendocrince is a rare subset of advanced cancers. To make matters worse, it’s the most deadly form of prostate cancer, so those few patients that have it generally don’t stick around long. In an online forum with thousands of members, it seems I can count the number of living cases of neuroendocrine prostate cancer without running out of fingers.
Boo hoo (said sarcastically). I’ve found another way to look at Joe’s story, and that is to realize that I’m still here. I’m sitting in my home office, looking out the window at the sun through the trees and hearing the birds singing. Joe is not here to enjoy this peaceful moment, but I am. It’s the realization that this disease could have easily killed me already, but it hasn’t, and I should be mindful of that. I could have been Joe, but I wasn’t, and so what am I going to do with this day that I might not have had?
Hold that thought and let’s get back to that “I feel like crap” opening paragraph. Each cycle of chemo has brought with it increasingly severe side effects. At my absolute worst, I had constipated diarrhea. This is a condition brought on when some drugs cause diarrhea, while others cause constipation. In planer terms, I had a bit of constipation that was acting like a cork holding back the impending diarrhea.
It led to one heck of a Friday night. Before the pandemic, many people thought of Friday night as date night, or a chance to meet up with friends for dinner. Generally it’s the end of a work week and a good reason for merry making. I spent this particular Friday night laying naked on the floor of my bathroom in a pool of my own sweat, wondering if I was going to vomit, have diarrhea, pass out, or some combination of the above.
I thought about calling 9-1-1, but decided against it. I didn't want the EMTs to see me like this. I should shower and put on some clothes and be more presentable when they arrive. If I do pass out, my wife can make the call and I'll be blissfully unconscious for the whole ordeal.
But I didn't pass out. My wife brought me some cold compresses for the back of my neck that greatly eased my suffering. Turns out she's an expert in dealing with intestinal duress, though that subject never came up while we were dating. When I was in my 20s, it was difficult to fathom what might become important to me in my 50s.
Eventually I climbed back up onto the toilet and gave it another go. Grunt, plop, plop, KAPLOOSH! I'm happy I didn't hit my head on the ceiling or crack the porcelain. The cork had been popped and the champagne was flowing, much to my great relief.
And the point of this story, besides grossing out my readers, is that not every moment of life is a gift. Some moments are just cursed and no amount of stopping to listen to the birds singing will make impending diarrhea any better. Let it be known that people like Joe don’t have to deal with such moments anymore.
In my last cycle of chemo, I was much more proactive about laxative use, and never let my bowels get into such an untenable situation. Still, this last cycle brought the most fatigue, left me the weakest I’ve felt, and gave me the most aches and pains. When I had chemo in 2019, things got pretty rough at the end, but I’d still have the odd good day here and there. In 2020, I’ve been lucky to have a good hour here and there. Most of the time, that hour was spent walking in the woods and then crowing about it on Facebook, to keep up my image as the happy, active cancer patient. But it’s been extremely rough at times.
As rough as things were getting, I do have a masochistic side, and was wondering if there was something else I could to to make this last treatment extra special. My urologist had the answer: Let’s replace my urinary stent. Stents can’t be left in indefinitely, as they develop “encrustations”, which basically means calcium and other minerals build up on the stent and turn them into a big long kidney stone. They can also become fragile and break with time. They should be changed every three months, but mine had been in for 4.5 months due to the pandemic and chemo.
Changing a stent isn’t quite surgery, but it does require going into the hospital and having general anesthesia. While there are no incisions, pulling an encrusted stent out through your genitals and having a fresh one inserted via the same route does cause some physical trauma. The hangover from the anesthesia, along with the trauma to my urinary tract, is what really made this last cycle of chemo extra special. On the bright side, that procedure is now out of the way and maybe I can proceed on maintenance therapy and begin to recover from the medical beat-down I’ve received since January. Maybe? We’ll talk about my impending scan in a moment.
One last observation about the stent: I asked, and practically begged the urologist not to insert a new stent unless it was absolutely necessary. Apparently there’s a test they can perform to verify that urine can flow from the kidney to the bladder, and the plan was that they would perform this test prior to inserting a new stent. This plan was confirmed on the morning of the procedure, but the urologist did mention he was very partial to inserting a new stent.
Afterwards, he admitted he didn’t even perform the test, he just put in a new stent. As far as he’s concerned, I still have active cancer and he wants me to have full kidney function for whatever treatment may come next. I really want to complain about how the stent greatly hampers my ability to run. On the other hand, my doctors don’t want me to become another Joe. They tell me not to lose hope, but then are very conservative in their decision making, almost like I have a deadly, high risk cancer or something.
The new stent has been extremely uncomfortable, but it’s too early to tell what’s truly due to the stent, versus the transient trauma of changing stents. And of course, chemo is going to enhance any fatigue and pain that might be associated with a stent change.
The stent is probably going to complicate my running, not that I’ve had the energy to go more than a mile at anything faster than a walk for a few weeks now. How the mighty have fallen, if you’ll allow me to call my mediocre pre-cancer running performances “mighty”.
Later this week I’ll be having a CT scan to assess the results of chemo. I am very anxious, and there is a reason why the term “scanxiety” is popular with cancer patients. The results of this scan will feed directly into decisions about what to do next in my treatment, specifically the possible use of radiation against the primary tumor in my prostate.
There’s a very good reason to be anxious. Radiation could extend a remission and overall survival, but brings with it potentially significant short and long term side effects. My life could be extended at the cost of incontinence or a burned rectum. How much extra survival are we talking about? Weeks? Months? Decades? I can guaranteed it won’t be decades, and very likely not years. Is urinary incontinence worth an extra month or two of life? These are the questions I’ll be trying to answer with my doctors, and reaching a wise answer requires that I think about what I want out of life and my cancer treatments.
And the answer I keep coming back to is “I want to run another marathon”. Of course, there’s much more to life than running, but it’s easy to put an objective number on. Also, my weekly mileage has correlated very well with how well I’m doing in all aspects of my life. In 2019, I had a number of weeks over 30 miles, and those were the weeks when I was working full time, had a social life, and spent quality time in the woods of Vermont.
In the last two weeks, my mileage totals have been about 6 and 5 miles at a very leisurely walking pace. I’m on disability leave from work, and my social life is an occasional Facebook post. I had a good hour yesterday and went to the CVS drive through to pick up some prescriptions. Weekly mileage totals in the single digits generally don’t correlate with livin’ la vida loca.
“Run a marathon” is becoming my mantra for balancing quality of life with length of life. I can’t run a marathon if I die before I complete the training. On the other hand, do I want to give up running and other things I enjoy and can still do for a marginally longer life? I don’t fear death so much as I fear being alive and not living.
And that’s what has made chemotherapy so difficult. I feel like a ghost haunting my house. My Mustang sits abandoned in the garage. I can see it, but I’m not well enough to take it for a drive or give it a long overdue oil change. In a couple weeks I could easily be back to doing those things, or I could have radiation and remain a ghost indefinitely.
Meanwhile Joe isn’t the least bit worried about scans or oil changes, and I sometimes find myself asking if I’d rather switch places with Joe. The answer is a pretty quick “no”. I generally don’t wish for death, I only wish to stop being so anxious about what the future holds.
