I’m still here, just taking it easy. Thanksgiving was a blast, the whole family was here. Spatchcocking the turkey was a bit of a bust, the butcher failed to do it, so I spent the afternoon doing it myself, but the family still took care of the sides so it all worked out and we had plenty of leftovers that we’re still eating. My siblings found a place in Baltimore that they like, so that’s taken care of (and took them a while). We’re decorating the house, picked up a small tree from Wegman’s that’ll do the job, now it’s just a matter of setting up the lasers without ruining the upstairs condo which shouldn’t be too bad.
To be continued.
11/22/2025
And things got more interesting. Not in a good way.
Partial seizure in the shower the other day. Full-blown left-side seizure Thursday. Thankfully Melissa was in range to hear me call out for the full one, and get the nasal spray in time to stop it. We were already headed to Schar for an Avastin drip, which put us across the street from Fairfax hospital, so they were able to do a CT and make sure nothing was going terribly wrong (brain bleed).
On the negative side, my employer, (did I mention their IT department is terrible), decided to involuntarily separate my employment from them. The technicality being that their payment system was recently “upgraded” and made terrible (worse), so I’m struggling to figure out how to pay them my premiums. Oh yeah, my mailbox rusted out completely and is gone (same thing happened at the townhouse in Manassas Park), and I found out they’re the responsibility of the HOA, and that lady doesn’t give a shit plus she hates me so there’s that.
More later.
To be continued.
11/19/2025
And another week goes by.
My employer decided today that I should be involuntarily separated from my employer, which I knew was coming, it just took a lot longer than I expected. And it has implications for my insurance, medical, Optune and dental, all of which has monster price tags. We’ll see how it all plays out, Cobra gets involved at some point. Oh yeah, our mailbox rusted out (again), so Melissa is at the post office picking up whatever we have waiting for us. Good times. Thankfully I have support from the family and my insurance handler knows what she’s doing.
To be continued.
November 6, 2025
And I’m back again. Another MRI completed (yesterday), the doctor called it stable which is a good thing, I did have another (minor) seizure about a week ago during a shower which was less than optimal. But, I was sitting down so there was no damage done, so there’s that. I’m walking comfortably on my walker which is nice, even if my strength is less than all there. Oh yeah, I picked up a 55″ TV because my former 50″ was old and primarily blue/black which sucked trying to watch anything less than bright. New one is a major upgrade, even if setting it up was a real bitch. Still an upgrade.
To be continued.
October 21, 2025
And another week goes by.
As part of the Optune device, there’s a cable plugged into the side of it, and the back of it. Which is just part of the machine, and usually it’s fine. Until I get up to go to the restroom, or the living room, or anywhere really. At which point I inevitably forget about the damn cable and drag the power box with me and typically everything on the desktop, too. Which is a lot of fun, and makes a lovely crashing sound as everything goes crashing down, especially at 3AM.
Anyhow, I’ve been told to lower my sodium intake, and you’d be absolutely blown away by how much sodium is in typical food, (okay, I don’t exactly watch my food intake very carefully because let’s be honest, it’s not going to kill me, that’s already taken care of by my uninvited guest. But, I’m not trying to rush the process or anything exactly. I do eat whole Domino’s pizzas, and chips and salsa, and pita with lots of hummus, and my appetite has been outstanding even though I was told the Chemo would fuck it all up. That definitely hasn’t happened, yet anyhow.
To be continued.
Sunday, October 12, 2025
Yeah, so it’s late. Whatever. I’m still here, just working through some shit. Fatigue from too many drugs is real. Avastin drip continues, might be related to fatigue, I dunno. It’s hard to tell which drugs cause which problems once you pass a certain number of them. So long as they keep giving me Oreo’s to go with the Avastin I can live with the rest. I have a shiny new Pixel 4 watch that arrived yesterday, that thing took two college graduates to put together, and we still just barely figured it out.
But, it works great, and the charger base for it is super-simple, so there’s that.
Also picked up a new walker, arriving Monday, so that should make getting around easier (again). We’ll see.
To be continued.
September 29, 2025
Pulmonary Embolism(s)
Yeah, those suck. I had a bad cough that just wouldn’t go away, so urgent care got a visit. The only nurse working decided it couldn’t possibly be pulmonary embolism(s), but sent me (us) to the ER the next day anyhow. I bounced around between CT, MRI, Echo, (this poor guy had to chase me around because I kept getting moved between rooms),the food person was much better than Alexandria because they actually took my order before meal time, which was nice. Including breakfast, unlike Alexandria where I just guessed what I was getting for my next meal. These things matter when you’re not allowed to have any control over what happens next.
Oh yeah, DVT is no fun. (Deep vein thrombosis, essentially blood clots in your legs, discovered by doppler exams of your legs. And so I’ve ordered these elliptical things that you see ads for but think they’ll never apply to you because they’re for seniors, which I couldn’t possibly be, I’m not old enough. And yet I apparently am. Cancer doesn’t care. The idea is they keep your legs moving so the blood clots can’t settle in and cause more problems. They’re due any minute, thanks Amazon/UPS.
But, until then, I have a game called Whiskerwood to mess around with. It’s a demo, so it still needs some work, but it’s promising. Essentially you run a mouse empire and try to keep some cats and pirates happy.
September 16, 2025
And I’m back. Avastin infusions are going well, all things considered. They keep feeding me Oreos, I’ll keep going. The Avastin is keeping the Edema (sp), swelling down around my little friend, which means my left side is functional, so that’s a win also. I’m still working on what I can do around the house, which is pretty limited to avoid falls, but I’m trying. I refer to it as the illusion of control, which is what I’ve been calling it since March pretty much. I’m capable of a limited set of tasks, most of which don’t include a lot of standing without assistance, mechanical or otherwise.
What I’ve started to focus on for the last few days includes puppies, which is a broad term that includes little bitties and larger varieties, all of which are currently occupying space in our adoption center. They have a couple different ways that I could potentially take one in, fostering, “Tails Out” which is basically just baby-sitting a slightly larger variety for a period of time, and anything in between. All of which would require assistance that I’m working on. We’ll see.
In other good news, I was able to take my partner out for her birthday (9/11, yes, she’s aware). I have another friend with MS who’s been complaining about ADA compliance for years, and I got a taste of it right in my face/feet. The restaurant had a set of ‘shops’ that were technically handicap accessible, but the button opened the inside doors, not the outdoor ones, and of course it was fucking raining at the time. And the indoor shops were all closed, as some employee gleefully informed me while watching me stand there in the fucking rain.
So, I found a shitty door/entrance to the restaurant in question, that had no handicap button at all, (apparently it was on the far side), and some guy at the bar inside realized I needed some help (mostly a napkin to dry off my very wet head), so he held the door for me, and we had a very nice dinner. Braised ribs for me with mashed potatoes and hericot verts (they’re green beans, get over it France), double crab cake meal with more of the same for my partner. Then there was the dessert, bread pudding with 3 scoops of vanilla ice cream that was absolutely amazing.
September 5, 2025
So, I had another MRI today. I’ve lost count, it’s a bunch. Which is a good thing in cancer land, it means you’ve made it long enough to have had a bunch of them.
This one, in particular, was good news. It was still loud as hell, they all are, and I can’t access the results officially yet, but the tumor, while still there, is a lot less … present. The edema, (swelling), is also still there, but a lot less present. So, it’s still pressing on things it shouldn’t be, but nothing like a couple of weeks ago.
All of which means the Avastin (infusion) treatments are working. My doctor’s reaction yesterday was very positive, and my next steps will be to very slowly taper me off of the dexamethasone (steroids), because staying on those long term is a bad thing ™. Tapering off too quickly can also be a very bad thing ™, so it’ll be a very careful approach. As the steroids were the solution ™ to my left side paralysis, stopping them could also bring it back if we’re not very careful. I’m following directions, because duh, to try to limit any return of that shit, because fuck that. I like to be able to walk and eat with both hands, plus typing as you can see.
The rainbow is just a bonus from the trip home from the cancer center yesterday during some mechanical difficulties that my family was thankfully close enough to help us resolve along with a tow truck. It’s complicated, but it’s not like solving a brain tumor level of complicated or anything. And I’m not claiming we’ve solved anything, but the situation has improved for sure.
Also, there should be a comment section at the bottom of this post, recently added, and comments are very welcome. It’s been a 6 month fight, (so far), and it’s not over, I just can see a rainbow over it (for now), so I’m sharing some good news. I’m well aware that 6 months is nothing compared to what some people go through dealing with this shit, but I’m going to enjoy my current status while I can.
Medications: Avastin, (immunotherapy), Keppra, (anti-seizures), Vimpat (anti-seizures), Dexamethasone, (steroids, anti-swelling), Clobazam (anti-seizures, good shit, even at tiny doses), some other stuff.
Also using Optune, which is an electronic treatment device that blasts my little guest with pulses every so often and I wear 24/7(ish). It prevents cancer cells from replicating.
To be continued.
August 23, 2025
So, I can type again. Big plus. Walking, with a walker and some light supervision, is another plus. Eating with my left hand? Yeah, I can do that, too. Do I feel like a 10 year old checking off a list? Sometimes, for sure. But, I’m feeling better overall so I’ll take it.
I started Avastin treatment about a week ago, which is an infusion style chemotherapy. It means I get to sit in a chair with an IV for 30-60-90 minutes and eat Oreo’s. That’s not my primary purpose, but it’s what I’m doing so that’s how I look at it.
