May 2015 Archives

…just for a change.

As of yesterday, I’ve been cleared to discontinue the “workaround” and go back to peeing fully on my own! To celebrate, here in just a few minutes, I’m going to have my first cup of coffee since this nonsense started. It’s only been 1 month, 1 week, and 4 days since the last one, but who’s been counting? (Other than me, I mean.)

In kidney/surgery news — still nothing new to report. Pre-op doctor’s appointment on 01 June, so I expect to know something after that.

I talked to my urologist today. (Oy vey, I have a urologist, this is my life now…) She called to discuss next steps. She had been a little concerned about the odd area in my kidney seen on the CAT scan, and had wanted to research it a little and consult with some colleagues before making a plan on how to move forward.

Fortunately, that’s all completed now. She’s decided the odd area is probably just some old scar tissue or something like that, not anything to worry about. Consequently, we’re going to go forward with the heminephrectomy — which is doctor for “cuttin’ out about half your kidney”.

This is kinda good news, because ending up with 1.5 kidneys is better than having just one. (It turns out, if something goes wrong with the other one, you can eek it out on half a kidney and clean livin’…)

But it’s also kinda bad news, because in order to take out part of the kidney, she’s going to have to open me allll the way up, using something called a “flank incision”. According to Dr. Ganeshappa (my urologist, y’all, keep up), this is one of the more painful surgical incisions when it comes to healing. I’ll be in the hospital for 3 to 5 days after the surgery, and I’m probably going to have an epidural for at least part of that, because the pain will be that bad. (The epidural is preferred for pain management because it doesn’t have the constipation issues you can get with narcotics.)

As you can imagine, I’m eagerly looking forward to that phase of the process. (Only, not so much.) I bet I end up with a bitchin’ scar out of this though, so I’ve got that going for me.

Now, the really good news: she also confirmed that, assuming that the tumor is stage 1 (very likely, due to the relatively small size), once it’s cleanly excised, that’s it — I’m done. No chemo, no radiation. I’ll have periodic imaging follow-ups (on the order of once a year) for the rest of my life, but that’s it.

I still don’t have a date for the surgery — other than “some time within a month” — but I will share it when I do. Between then and now, I have to do a bunch of pre-op stuff (blood work, X-rays, and an MRI (to give Dr. G. a better idea of where things are, tumor-wise and kidney-wise)), and I’ve got a “pre-OP” appointment with Dr. Ganeshappa on June 1st, so it will be after that — but how much after, I’m not yet sure.

Thanks again for all the messages of support and offers of help. <3

Thank you to everybody that responded on Twitter, Facebook, sent email, or called in the wake of Friday’s post. I really appreciate the support, and particularly people’s willingness to volunteer to help in what is probably going to be a fairly crappy, trying period. Love to you all.

Damn, it’s all dusty up in here. Last entry in 2012?! Kee-rist, I’m a poor excuse for an olde skööl blogger…

So, as some of you are aware, or may have inferred from my social media postings, I’ve been having some health issues lately. It all started around the middle of April, when I sort of … lost my ability to pee. That’s lead to a massive upswing in the number of doctor appointments in my life, and has greatly increased the number of people that have handled my junk.

That’s sort of mostly okay at this point — I’m still not peeing all that great, and the workaround for that is not the most fun I’ve ever had, but it’s manageable, and every day I pee a little bit better. Hopefully soon, I won’t need the workaround anymore. (Email me if you really want details about the “workaround”, but trust me, it’s probably not your scene.)

But, that’s not really important to this post…

During the course of getting the not peeing thing cleared up, I found out that I have diabetes. This is also not turning out to be a huge deal — I immediately went on a low carb diet and some drugs, and a few weeks later my blood sugar levels are looking really good. I saw my primary care doc on Tuesday, and basically all he said was “keep it up” and “come back in three months”. I’m a little disappointed that I’ve eaten my last sandwich ever, but hey, them’s the breaks. I’m even pretty confident that, in time, I can get off the meds and manage things entirely with my diet.

Of course, the diabetes isn’t really what’s important to this post either…

During the course of getting the whole “Johnny can’t pee” thing evaluated, one of the tests they did was an ultrasound of my bladder and kidneys. And that ultrasound showed what the doctor calls a “renal mass” — which is doctor for “a chunk of shit in your kidney that shouldn’t be there”. The ultrasound was followed up with a CAT scan, which confirmed that the chunk of shit is indeed probably a tumor. (There’s a 5% chance it’s something else, which just looks like a tumor, but … it’s probably a tooo-moor.)

There’s also something else odd, in a different part of the same kidney. To quote the very experienced urologist that I’m seeing, “I’ve never seen anything like that before!” Could be the remnants from an old injury, could be … well, who knows.

So, right now, the plan is: cut some or all of that kidney out. The doc is going to put her head together with some other docs and see what the consensus is on the other weird stuff, and that’s going to determine whether they take out the whole kidney or just the part around the tumor. In general, from what the doc said, they like to remove as little as possible, but if it seems like the other stuff is going to be an issue, fuck it, let’s get the whole thing out. (I may be paraphrasing a little there.)

From her description of the alternatives, I’m actually kind of hoping for the “take it all!” route, because that can be done laparoscopically, which will make for a much easier recovery. If they decide to just take the tumor, I’ll have to be opened all the way up and will end up in the hospital for about a week.

So, obviously a shitty situation — but, looking on the bright side: this was completely unrelated to the issue with my inability to pee. The only reason it was caught was the ultrasound — and the only reason the ultrasound was done was because I happened to mention than an urgent care doc had said she was going to order one, so the urologist ordered it. She said normally, with my symptoms, she probably wouldn’t have bothered if I hadn’t mentioned it. The tumor is still pretty small (around 2.8 cM, which I guess is small as far as renal cell carcinomas go), which means the long-term survivability after removal is really good — 95-98%. This could have gone undetected for years, until I started pissing blood or something. So, while shitty, things could have worked out much, much worse.

Now, short-term consequences: I will not be at this year’s YAPC, I am very sad to say. I am also not going to be able to do {REDACTED VERY COOL THING}. It’s probably fortunate that my OSCON and OSB talks didn’t get accepted, because it saves me the trouble of canceling them. Instead of doing those things, I’m going to having surgery, probably in late May or early June, and then focusing on recovering and healing up, so I can do all those things next year. Because fuck cancer.

I intend to post updates on my condition here, but feel free to drop me an email, or poke me on Twitter or Facebook, and ask how things are going if it seems like it’s been too long since I’ve updated. And now … I think it may just be time for a nap. 8^)