Let’s go back to the beginning of January, I had some unexplained urinary pain but no other signs of cancer. PSA was undetectable, other blood results were normal-ish, cystoscopy showed everything clear in the bladder, and so my medical team was more than happy to give me a clean bill of health and blame my symptoms on friable tissue seen in the prostate at the end of the cystoscopy. Spring is only a few months away, it was time to start thinking about vacations and how I’d go about training for a marathon.
A few days later I went to the emergency room with severe, writhing on the couch abdominal pain, thinking I had appendicitis or a kidney stone. Nope, CT scan shows those are all fine, but it did show a large growth in my bladder. WTF? So they called my urologist who basically said “WTF, I just looked in there and it was fine”, so they changed the description to “prostatic mass” and sent me on my way with an antibiotic prescription and instructions to see my oncologist.
Oncologist looks at the scan and basically says “WTF!”. Suffice to say nobody on my medical team was expecting anything like this. But at the time he was optimistic and thought that chemotherapy and radical cystectomy (removal of bladder) might be curative. He sent me on my way with a prescription for Percocet and a plan to get a bladder biopsy. While I’m not really thrilled at the thought of losing my bladder, how upset can I be when my oncologist is optimistic? As a bonus, they’d probably also remove the prostate, thus getting two primary tumors out of my body for the price of one.
Fast forward a few days and it’s time for my biopsy. I can’t even remember this specialist’s name, that’s how frazzled I’ve been. Anyhow, he said biopsying the bladder would be risky for his flavor of biopsy, as it would poke a hole in it and allow the urine to leak out internally. It would be much safer if he could get a sample from my lungs or my liver. My what or my what??? So into the CT scanner I go, and he finds a spot on the liver that’s not very deep and proceeds to stick needles into my side. I was conscious for all this by the way, but drugged. As things move around when breathing, I had to take a consistent breath, hold it, and then stay still while he moved the needles around, then back into the scanner to see if they’re in the right place yet.
A few years ago this would have been a horror story to me, but now it’s just a semi-regular part of life. Interestingly, most of these procedures are much easier to endure than a 10 mile run. Also, once you’ve experienced cancer symptoms, medical torment feels like a kiddie roller coaster by comparison.
Up until this point in the story I’ve spent the vast majority of my time lying on the couch or napping in bed, owing to a combination of antibiotics, opioids, and symptoms. The frequent severe pain is thought to be caused by a restricted ureter, causing urine to back up in my right kidney leading to pain and infection, quite similar to if I had a kidney stone. Those who are better at reading CT scans than me assure me that this particular kidney does not look happy.
My antibiotics were finished on the day of my biopsy. Since then my pain levels have plummeted and can largely be controlled without opioids. This would normally be good, except that lower pain levels allowed me to relax and begin to emotionally process the events of the last couple of weeks. I’m back on medical leave from work, it’s difficult to run long without aggravating my symptoms, and they just biopsied my liver. They wouldn’t biopsy the liver if they didn’t see something on the scan worth biopsying. “Fuck, I’m going to die”. I have been slapped in the face with the cold fish of mortality again. And I can’t even share a dark, depressing moment without turning it into a Python reference.
A lot of this darkness was driven by the thought that the most likely outcome of the biopsy would be bladder cancer metastasized to the liver. That would be bad. My life would be in Jeopardy:
“I’ll take deadly cancers for $500 Alex”
“This cancer’s death rate is comparable to advanced pancreatic cancer”
“What is advanced bladder cancer?”
“Correct!”
Late yesterday I got a call from the oncologist with the initial biopsy results. “Undifferentiated cancer”. They’re still running tests, but have confirmed it is cancer. Strangely, it doesn’t appear to have originated from my bladder, prostate, or liver. This could be a new, third cancer, or it could be cancer that’s mutated so badly as to no longer be able to determine where it originated from. This is where my lack of medical knowledge causing things to get lost in translation. I’ll also add “Martian cellular invasion” and “Zombie apocolypse” to the potential final results of the biopsy to demonstrate the full depth of my knowledge in this area.
Somehow, I’m actually upbeat about this latest news for many reasons. It’s still possible they will identify this as a specific cancer that could be more treatable than advanced bladder cancer. If it didn’t originate in my prostate or bladder, then all those checks for recurrence of those cancers weren’t in vain, they just weren’t looking for new cancers. A third cancer could make me a bit cocky. “You’ve seen what happened to those other two cancers that messed with me, haven’t you? I’ll give you a week to leave my body quietly before kicking your ass.”
Most importantly it’s a reminder that you just never know what’s going to happen when you wake up each day. Normally, this is a real drag because how do you plan anything in life when you can’t reasonably expect to be healthy on any specific day? More specifically, how do I train for a marathon when runs over a couple miles chafe my bladder tumor? It’s enough to make me want to cry. Und I did.
So here I am again, 463 days, about 15 months after my life was ripped to shreds by my original cancer diagnosis, waiting for the specifics of my next diagnosis and standing in the rubble of the new normal life I had pieced back together. Depressing, isn’t it? Well, I’m hoping I hit bottom a couple days ago.
As I’m increasingly able to control my pain without opioids, I can get hours to do things during the day. It’s a gorgeous January morning, so I’ll probably head out to the garage later and give the snow thrower an oil change. Generally I hope to get a few things accomplished and have a few laughs along the way. At this point it’s reasonable to expect I’ll wake up tomorrow, and the day after, and so on until the day they figure out which chemotherapy should work best for me. With luck that will beat the disease back into remission giving me many more days to wake up and figure out what to do and what silly thing to post to the internet.
While I still have my dark moments, I’m focusing on taking one step at a time and putting the pieces of my life back together as I can. In closing, let me stress how vital a sense of humor is in a time like this. How do you seize the day and savor every moment when you’re writhing on the couch in agony? Well, within a few hours of that awful moment, I pulled up some Monty Python on Netflix, and happened to re-watch the fish slapping dance. I can’t resist giggling at this short sketch. What in life could possibly be so bad that I wouldn’t laugh at it?
Let me leave you with this thought: When things get really bad and I can’t take it anymore, I’m going to load up on painkillers, grab a fish, travel to the local mall, and start slapping random people with the fish. When the police arrive I’ll drop the fish, pull out a banana, hold it over my head, and charge them with a fierce scream. Now matter how that ends I’m sure it will be a once in a lifetime experience.
I’m relatively certain such an act will make the news, so if you watch the news and this isn’t the lead story, you can rest easy in the knowledge that I’m coping with things okay.
Yikes, man. I get what you're saying about crossing the line of preposterousness. You are right about humor. I use it to stay out of crime scenes. People think I'm a tough guy, but it's just a highly developed capacity for denial.
ReplyDeleteI am so sorry you are going through this. Just an FYI, my mother says she doesn't want to see you on the evening news!
ReplyDeleteA few years ago, I became a Reiki practitioner. In case you don't know, it's a form of energy healing and can be done long distance. I know, it sounds a lot like a faith healer saying, "Put your hayands on the the raydio!" type of healing, but it was proven to me.
As you might remember, when I was first diagnosed with MS, I was in a wheelchair because of drop foot. A friend who happened to be a Reiki Master (one step above a Practitioner,) asked me to call in to her pod cast and she would do long distance healing on me. I didn't believe it would help, but I thought that the worst that would happen is I would waste some time. All I had to do is sit there and she did the rest.
While it was going on, the offending foot got really, really warm, but I put that off as a psycho-somatic reaction. She said I might not feel any results until the next day and warned me that it wouldn't be a cure. I went to bed that night thinking, "oh well. At least I tried."
Son of a gun, the very next morning I could move my foot much, MUCH better! It wasn't a cure, but I could walk without pain and without holding onto the wall.
I am willing to send Reiki healing your way if you want. All I ask is that you keep an open mind.I didn't just do it because if you don't want it, it won't work.
Just send me a PM in Facebook to let me know.
Hello Tom I had prostate C ,did radiation & Lupron shot,my cancer was aggresive,I will be 4years in remission,I feel what has helped was my diet ,I have been eating shitaki mushrooms every morning in omelette ,plus alot of broccoli , avocado,tomatoes,& carrots all organic too.if there one thing you can for yourself is this. I also was taking B17,you might want research it.prayers for you and God Bless
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