Its been a long time since I’ve written anything here. The short of it is that my left kidney is damaged and the ureter (the tube that drains urine from the kidney to the bladder) collapsed. That meant that my kidney backed up and suffered more damage. Its now processing at about 4% effectiveness. Kidneys are considered a lost cause when they reach 10% effectiveness.
I’ve been living with some form of drainage tube for a significant portion of the last year. First a drain to siphon fluid buildup after my RPLND, then a stent to open up the damaged ureter to help my kidney recover.
If you’re not familiar with a ureteral stent, then pray this is your only association with it. Picture a tube, pigtails on both ends, one end in your kidney, the other in your bladder. Now imagine it rubbing on your bladder. All day. No matter how you sit, walk, or lie. The techs who put it in will tell you that you’ll not feel it at all, that everything will be normal.
There’s not a single part of your day where you don’t notice it. My kidney would constantly hurt. And where it rubs in the bladder would hit a nerve that would send pain from my prostate to the tip of my penis. Somehow in all of that it would make my butthole feel hot. I’d pee sitting down so that I could double over and wince and not worry about having to hit a target. And also so that others wouldn’t see my cry in the bathroom.
Yesterday the stent was removed and that was… awful.
No anesthesia, just a washing of iodine, a bit of numbing gel and lube before a probe is pushed up the urethra. Initially it is uncomfortable but tolerable. Then it had to pass the prostate. And the prostate didn’t want to let it by without a fight. The feeling of it popping in to my bladder was jarring.
I got to watch all this on the TV. I could equate bumps, scrapes and prods inside my body to what I was seeing on the monitor.
Fluid was pumped in to my bladder to inflate it. The doctor poked around a bit, she looked like she’s playing a video game. She found the end of the stent and then I saw it. A claw started to protrude in to view. It’s kinda horrifying to watch this claw open and close inside my bladder. All I could think of was that claw grabbing the inside of my bladder and how painful it would be. You could have bounced a quarter off of me I was so tense.
After a few tries the doc got a hold of the end of the stent. Then I’m told to hold on. The doc pulled and retracted everything out.
But the stent slipped. We got to do it again.
It doesn’t get easier or less comfortable the 2nd time. This time though everything came out in one swift motion.
But I’m not done. My bladder was full, I was covered in iodine, and all I wanted to do, more than anything else in the world, was pee. But the doctor wanted at this point to tell me everything I should do to recover and blah blah blah…
I finally got to a bathroom. I’ve got wet towels to clean up with and a towel to dry off with. But I had to pee.
And I was terrified to pee.
I’ve had things jammed up my urethra before. You end up with small abrasions on the inside and the urine burns… it burns so much. But I had to pee. But the Iodine was slippery… and I was soaked in it around my waist. So I couldn’t just sit and pee. I had to concentrate on not falling off the throne. Fortunately I was able to suppress any vocalization of pain when I finally peed. Though I’m sure they’re used to hearing weird sounds coming from the bathroom.
I finally got that over with and start wiping up. Everything is cleaning up nicely. But lo and behold I forgot to lock the bathroom door! So I also got a little face to face time with a nurse as she blundered in on me washing my junk.
I’m home now. I watched How I Met Your Mother episodes all afternoon and sat as still as I could on the couch. Peeing still hurts. Oddly enough, so does pooping, but I think that’s ‘cause my prostate is unhappy as well. As is my kidney. They’ll all probably hurt through tomorrow. I don’t go back to work ‘till Monday, so there’s that.
All in all I give the experience a big thumbs down.
I hope now that this is the last I have to worry about the kidney. If the ureter stays open I’ll be fine. The kidney can simply process what it can and we’ll all live happily ever after. If it collapses again we’ll need to keep an eye on it over the years.
The best part is, though, that I immediately feel more human. No more constant pressure on the inside of my bladder. I feel like I can rejoin the world again. And that’s precisely what I plan to do.
I was recovering well from the RPLND. I was back to putting in time at work, albeit from home, but I was starting to feel better and be able to concentrate on something else to take my mind off of the recovery.
That ended last Thursday (Nov. 19) when uncontrollable pain sent me to the ER. The ER tech tries twice to give me an IV line before relinquishing the task to his buddy. The IV that “worked” hurts. Some morphine and a CT scan later I was feeling better and being told about fluid build up in my surgery sites along the front of my stomach and in my back. The fluid build up in my back, in the Retroperitoneal area where they removed my tumors, where the ones causing pain as they pushed on blood vessels, nerve centers, and my surgical site. I was told that this was called a Seroma and that it would get re-absorbed by the body.
I was sent home and told to control the pain with medication. This is where I just lost about 5 days of my life. I spent the following days in bed. Getting up to pee and take more drugs. All the while trying to keep the wife from worrying that I was gonna over medicate and cause damage. I was more concerned with addiction than anything else. Its a damn nice feeling to take 2 Percocet and lie down…
On Monday I went in for a follow up scan to see how everything was doing. By this time I was experiencing less pain and was back to managing it with just Tylenol. Though not much as the thought of taking more pills right now, now matter what they are, is a little nauseating.
The whole day was a bit of a comedy of errors. First off my surgeon wanted the scan done on Monday but I couldn’t get an appointment anywhere to do it on Monday, so I had to walk-in and hope they could get me in. So the wife and I camped out in the San Leandro radiology department early Monday morning. I fell asleep on the bench until someone came out and handed me a 1000ML bottle of water and told me to drink it all.
About an hour later someone calls me in to the back. I go sloshing back, get changed in to the always popular hospital gown and they give me an IV. Now, my arms are pretty torn up at this point and my normally good veins aren’t presenting any good targets for an IV. The tech struggles a little but gets a line in.
A bit later they finally get me in to the scanning room. I don’t know how long I waited. I might have dozed off. I am REALLY tired. We get the first part of the scan done, the part that doesn’t require giving me the injected contrast fluid. I would have dozed off if there wasn’t a voice telling me to hold my breath once in a while.
We then move on to hooking up my IV and starting the fluid. It felt weird and the tech immediately came running in to the room and stopped the IV. Apparently my IV blew out and they injected about 15CC of the fluid directly under my skin. My left bicep was bulging. I guess protocol in this situation is to call a doctor and log the incident, so I was looked over by a very overly caffeinated doctor who drew all over my arm and ordered the tech around a lot. She deemed me to be OK, told me that my body would absorb the fluid in time and to drink lots of water.
That concluded a new IV was started in my other arm, the arm previously bruised up by the ER nurse a week earlier. The nurse struggles to find a vein but does get one on her first try, though she says that she’s not getting good flow. She goes with it anyway. She’s a bit paranoid from the earlier incident so she stays close and starts the injection of fluid. As she’s fiddling with the machine I feel a warm sensation on my arm. The IV is leaking bloody fluid. The nurse stops the injection, cleans up a bit, but continues with the injection at a lower flow rate. Not wanting to stop she says that this is OK and that she’ll just go slower. I know I’m getting the contrast as I can feel the familiar warming sensation in my butt, like I just shat my pants.
With the injection done we continue with the scan. I just so badly want to go to sleep, but again that voice telling me hold my breath keeps me from my slumber. The nurse comes back in and removes my IV. Since she went in close to the bruises on my arm from the ER there was no way to do it without hurting. And hurt it did. We finally get that done and I stand up to see the table and pillow I was on covered in my blood and the contrast fluid that leaked out.
From there I grab my things, change back to my normal clothes, and go home. The ride home couldn’t have gone any slower, I don’t think… I just wanted to be in bed, curled up with my heating pad and pillow.
Later that day my surgeon follows up and tells me the same thing as the ER doc. Fluid build up, but he calls them Lymphoceles (which seems like its just a more condition specific way of talking about a Seroma). While the fluid in my stomach has subsided some, the fluid in my back hasn’t changed. My surgeon admitted that he’s not sure about how much fluid generally builds up after a surgery as they typically don’t image patients this soon after surgery. Its typically 3-5 weeks out that new scans are done. So we’re kind of sitting in the dark as to wether I’m typical and unlucky, to atypical and still unlucky.
So as we go in to the Thanksgiving holiday I’m still in a bit of pain, but can walk around and take care of myself again. I hope that I feel good enough to go to dinner tomorrow night. At the very least I have my appetite back and look forward to having a normal poop again.
It has been a week and a half now since my RPLND surgery and I’m recovering mostly fine, save the bloating.
The surgery took about 6 hours and nothing out of the ordinary was encountered during the surgery. I had an epidural for the surgery (which they almost pushed me off of the operating table putting in) so I was up and walking the next day. The doctor pushed hard to get me on my feet as soon as possible. The effectiveness of the epidural was amazing. I felt great. I could tell that I had a large line of staples running up my stomach but didn’t feel really sore.
I spent a week in the hospital recovering. Long story short on that one is lots of laps around the floor, some diarrhea, no real poop, and lots of bad food. And bloating. Oh, the bloating. I can’t fart.
The epidural came out a few days after the surgery and thankfully I’ve not needed any extra pain meds at all. Which is good, because they’d only add to my constipation.
We got the pathology back. Four teratomas removed. One was baseball sized. Another a little bit smaller at around tennis ball size. Two more taken out but I kept forgetting to ask how big they were. One of the teratomas was encroaching on a blood vessel my left kidney. Fortunately I’m a rare freak who has multiple of these blood vessels running from the kidneys so I’ll only suffer a small loss in kidney capacity because of it.
The bad, or rather ambiguous, news is that two of the teratomas showed presence of low grade Adenocarcinoma. On its own that is bad, but here it was contained within the teratoma, so we’re just gonna keep an eye out over time. Not the “All Clear” I was hoping for.
All in all I’m recovering OK. I’m eating well slowly returning to the land of pooping human beings. Today has been good and I’m hopeful that it’ll just keep getting better.
If the bloating hangs on for much longer its going to start getting really hard. It is already keeping me up at night and when I do sleep I get some wicked weird dreams. Walking helps with the bloating, but I’ve also been cold and it is a little chilly out (I can’t seem to regulate my body temperature at all) so I’ve just been walking around the house to get a little exercise in.
So here’s hoping that we’re done chasing malformed cells for a while. In the mean time the rest of the year is just gonna be:
Gonna try to make the best of the remaining year with the wife and hope that next year is better.
The verdict is that the masses I have left are either:
The docs are concerned that the tumors are putting too much pressure on my kidneys and could also interfere with other organs by means of compromising blood flow and possible invasion.
So, that means that I get the big nasty surgery that I didn’t want. The surgery is a hefty one. It’ll require resting my intestines on my chest while they take out the tumors. The tumors are close to major arteries, nerve centers and my left kidney. I’ll be in the hospital for 5-7 days. Suggested recovery time is another 3 weeks beyond that.
As of now they’re after only 2 tumors, but they’ll remove anything else they see that concerns them. The tumors look HUGE on the PET scans. The size of my fist or larger. I thought they were smaller than that.
There’s a possibility that several different sexual functions can be impacted by the surgery. But we won’t know what’s impacted until afterward, unfortunately.
Either way it won’t be fun. I’ll get an epidural, a catheter down my nose and in to my stomach, and a urinary catheter. No food for 2-3 days. Feeding will be intravenous. Then the doc said he’s gonna kick me out of bed and make me walk around as soon as possible. I’m gonna be one grumpy asshole (ok, so this isn’t new).
So, yeah… I need a drink.
So much for normalcy
I’m let down by this news. I let myself get too comfortable with the thought that despite the tumors showed no change in size from the chemo that I could relax and call it done. I feel like my oncologist could have better prepared me for the reality of my situation. But that’s neither here nor there.
The reality is that this was always a possibility and reality likes to bring ya back down to earth with a resounding thud sometimes.
This is particularly tough because I’ve been struggling as of late. The neuropathy is driving me crazy. Among the physical issues that it has brought is also a mental issue. I’m not all here. My ability to focus is shot and I can’t get productive at work. This has been going on for a few weeks, well before the word came down that I’ll be getting surgery. It is making me grumpy and overall I’ve got a pretty bad attitude towards work.
I do enjoy being back at work. I like my work and I like who I work with. But my ability to concentrate on the task at hand or sometimes even properly conceptualize the solution needed is severely compromised. I take a long time to do what I used to be able to crank out. A lot changed while I was out and every day I find something that I used to know that I no longer have any scope on. I don’t feel like I’m contributing. And I feel like my relevance to the team is waning.
Another 4 weeks of being on the sidelines isn’t going to help that feeling.