Hey, look, I’m not the only one.
Gifted article: https://wapo.st/3ELVB1e
I had my last radiation treatment and chemo pill yesterday. I’m feeling fine, and I get the month of May off, essentially.
I’ll get back to story telling in a bit, I’m trying to enjoy my first day off of everything in 6 weeks. And of course I’m fighting with two Mini Cooper service shops, and my old landlord, and so on from there. Because why the fuck not.
To be continued.
So anyhow, it’s been a minute. It happens.
The DMV, somehow, decided to renew my license in full, including my motorcycle endorsement. I was honest on the application, so I’m not apologizing for anything that happened that day, but I’m also not an idiot. I have no plans to drive until I’m a lot more confident that I won’t have any more seizures. Theoretically that’s sometime in August, but we’ll see. The last thing I want this little bastard to do is hurt anyone else.
Moving on, I decided to flip on The Weather Channel, to see coverage of the storms crossing the MidWest. After 5 minutes of commercials, then “Local on the 8s”, then 10 more minutes of commercials, and another round of “Local on the 8s”, they finally got around to covering … the weather. I’d like my 20 minutes back, thanks. At least I’m not paying extra for this shit, at least I don’t think I am. With DirectTV, it’s hard to tell what it is you’re actually paying for sometimes. Holy shit, they’re back to promoting more not_the_weather. Some show about tow trucks. And there’s the power button on my remote.
So, once the seizures were stopped, they couldn’t get me out of the hospital fast enough, which I agreed with whole-heartedly. We had already made plans to move from the Townhouse in Manassas Park to my “unicorn” condo in Alexandria/Mount Vernon that I closed on a couple of weeks before my misadventures with my little friend. Those plans got accelerated dramatically once we collectively decided a single story condo would be much better for me than a 3-story townhouse. Movers/packers had already been hired, we just moved up the timeline by two weeks. Which meant the day after I got out of the hospital, I was arranging and packing my stuff as fast as possible. March 2nd? I think… was moving day. We had a crew we had used before, when I moved from Falls Church to Manassas Park, and they were just as solid this time, while also working with/around my partner who made a drastic change in her plans. It’s complicated, and not really my story to tell, but she decided to join me on my roller-coaster ride, while also keeping most of her stuff in storage, essentially. She’ll get back to it at some point.
I do want to throw in a shout out to my late friend, Rich Stark, whose blog inspired me to write this one. He lost his battle with Multiple Myeloma over a decade ago, but chronicled his own battle on the way out, and so here we are. Also to the guy hosting this for me, another friend from the gaming world, who admittedly doesn’t really know how to help me make this look any better but at least it’s running. And the price is right.
The next couple of weeks were mostly a blur, involving packing the rest of her stuff up, (her movers stayed on schedule for 2 weeks after mine), cleaning out the townhouse as best we could, (our former landlord’s still trying to take our entire security deposit exactly like I expected he would), and related.
And on March 20th, my ‘new’ routine started, with the radiation and the chemo and the resting and everything.
To be continued.
Let’s see. On today’s agenda is the DMV, to get ID of some kind with my new address on it, (in Alexandria, the condo/unicorn where I’ve been for a little over a month now), and accept that I won’t be driving for a while, if at all, again. No idea what they’re going to want from me to prove that I belong in the US, not El Salvador, and that I live here. So I’m bringing everything, essentially. Passport, title paperwork, and whatever else I can find. My utilities are all electronic/e-mail, essentially, so if they want those it might get messy.
Back to the story… I went to INova Urgent Care in Vienna, which was wholly unqualified to deal with me. So, after refusing an ambulance and signing some shit to the same effect, I drove to Fair Oaks hospital, thinking it was on my way home and incorrectly thinking that’s where I’d be going after I got checked out. Boy, was I wrong.
The next parts get a little blurry, because that night was complicated, so bear with me.
Fair Oaks checked me in, verified my insurance, and off I went into my first of so many tubes. I think a CT was first, but it could’ve been an MRI, I honestly don’ t know. They decided I had something that didn’t belong in my head, and then decided that they were also wholly unqualified to deal with my situation. This time there was no debate, I was packed up and shipped out in an ambulance to Inova Alexandria Hospital, where I’d spend way too much time over the next however many weeks.
Once I got there, it was into another tube after some more paperwork and noise. Their neurology department wanted to confirm/verify what Fair Oaks had found, I guess. After the tube, I was checked into my new home in the ICU for a few days. Blood pressure cuff attached, EEG leads attached, blood drawn, (so many times), SPO2 (I think it’s called, the finger thing that measures Oxygen in your blood somehow), the list went on and on. And of course drugs. So many drugs. And when the SPO2 thing got mad, they added a nose canula to the mix, asked if I’d ever been diagnosed with Sleep Apnea, (not officially, but yes), and that nose thing became part of my life at night, just to shut up the damn alarms, (my opinion, they had their own).
I’ll drop a picture at the end of this post, I had my head wrapped and a bunch of sensors. They wanted to capture my brain activity during a seizure, but I’m not sure if they ever did. Again, this part got a little blurry.
At some point, they told me I had what I’ve been calling my uninvited guest, and that it might be something called a “oligodendroglioma”. In order to confirm, they needed to do a biopsy. Which meant drilling a hole in my head, and taking a sample of my uninvited guest for analysis/pathology. But first I formed a family group chat on Whatsapp called “Olio Cacio e pepe”, because it amused me at the time. And invited everyone local who needed to know what was going on. More details about the local part in a bit.
Off to surgery, which was as much fun as I’m sure you can imagine. Burr hole in the top of my head, (while I was thankfully asleep), some device shoved through the hole to grab a piece of my uninvited guest, and off to pathology that went. As it turns out, my guest didn’t like that at all.
Thanks to some of the drugs I mentioned earlier, the next part was a lot more controlled than it could have been. I had a total of 4 “minor” seizures over the next couple of days, each of which was preceded by a warning that’s really hard to describe. I used a few terms at the time, some of which were introduced to my vocabulary by the nurses, (who were amazing, for the record), others of which I came up with on my own. Aura, wave, and related. I basically knew something was wrong and about to get worse, and then it did. Some minor shaking from my left leg, some more minor shaking from the rest of my body, and then it was done. ~90 seconds, give or take. All very peaceful compared to the shit I went through before the medication got involved, which I was so thankful for.
After the 4th, they added one more drug to the mix, and that was that. Keppra was the one that got things under control, Vimpat was the one that stopped them entirely. And that’s still true today, I had those 4 minor ones and done. Until there’s a breakthrough seizure at some point, but that’s on my list of fears more than anything, I haven’t had anything but an occasional aura, no waves of any significance, and I’ve been home for weeks.
More details/story to come, I’ve got to get my act together for that DMV trip I mentioned.
To be continued.
So, I got to play with the electric mower that the previous owners of my condo left behind. After attempting, and failing, to use my extension cord to power the damn thing. And then my partner went to CVS, and Safeway, and was unable to find a 2-prong extension cord that would work. And so we ended up at Home Depot today to find a 12′ cord when we only needed 6″, but whatever. It worked.
I was doubtful of the mower at first, but it got the job done. Dragging around a cord is a PITA, so I’d definitely go with a battery powered one if I was buying one, but this one “conveyed” with the condo, so whatever. It works.
Chemo has decided to fuck with my face, a little, which is annoying. Enter Aquaphor, which is something like Neosporin but twice as slimy and might help, apparently. Essentially I have red patches on both sides of my face next to my schnozz, and above my eyebrows/schnozz. So I covered them in slime, and I’m hoping that will help. Of course once my laundry’s done I’ll be washing all of that shit off in the shower, and then replacing it with another coat, but whatever. I’m trying.
Going back to my origin story a little, my second seizure was essentially the same as the first, I woke up to my leg having a private party I wasn’t invited to, and a mess to clean up. I told my partner, and ignored it again.
And then the third one like 4 weeks later finally got my attention. Not because of anything special about it, but it convinced me they weren’t going to stop. And so, just like the other two, I cleaned up the mess, told my partner, ordered and picked up breakfast, went to work, did my job, and then when I came back to the office at the end of the day I told my supervisor that I had a medical problem, and would be going to urgent care directly. I kept it very vague, because I like the guy and didn’t want him to end up in a challenging position involving HR and HIPAA and all of that. He still doesn’t know, not really, and it’s been a while and we’ve talked a couple of times.
Urgent care, and what came next, is for another post. My laundry’s almost done, and after my shower I’m supposed to provide dinner one way or another. Domino’s messaged me earlier tonight, I’m sure they can come up with something that’ll work.
To be continued.
I’m baaaaaaaaack!
So, as tends to happen from time to time in my life, puppies tripped over the power cords. All of them. And some of them had something to do with hosting my blog’s site, or at least that’s what I’m going with, because I asked someone else to host my blog for a reason. Definitely not my area of expertise.
After a conversation with the puppy provider of his internet, and a ticket with some other puppy technician or something, the blog’s back. No medical problems were involved in any way, at least not this time.
I’ve been in treatment for a week and a half at this point, I think… Radiation only on weekdays but chemo every night. I lay down on a flat board loosely related to a Cat Scan or MRI machine, without the tube, and they blast my head with targeted radiation for a few minutes. It’s pretty quick and painless, so far, thankfully. And it’s supposed to shrink the tumor, I think? The side effects are similar to sunburn, but not significant yet. And fatigue, but I like naps so whatever.
Then there’s the chemo. Around 11:20 every night, I sit down at my computer desk in my office, throw on a Nitrile glove, and get ready to swallow poison pills. It’s what they are, they’re poison. Their goal is to prevent the growth of more tumor cells, while also doing various bad things to the rest of my body. Thankfully, the side effects have been pretty minor, so far, but they have made my right hand/arm subject to actual puppy attacks. My skin’s a little fragile, basically. I’m using some cream called Aquasomethingsomething. We’ll see.
Oh yeah, I have a foster puppy. She’s a 2 month old beagle-something-something, that I definitely need to figure out how to put pictures of on here. She’s a handful, and a terrorist, and … shit, I better be careful or someone will take her to El Salvador. She really likes to bite … everyone, and scratch everyone, and her housetraining is questionable at best, so she’s a foster puppy. And I love her, for her brief stay at my new Puppy Palace. The cat does _not_ love her, and my two senior-ish dogs are still deciding. Gizmo plays the part of Uncle Gizmo as always, and Crystal … mostly barks at her to keep her in line. Her name is Neveah, which took my roomy/partner and I several days to figure out was Heaven backwards.
I think something involving dinner is coming soon, maybe, so I’m going to wrap up for the moment. And drop some pictures in here, which will definitely go as planned, right?
To be continued.
Started targeted radiation and chemo today/tonight. So far so good, but it’s a long road and I’m just getting started.
Family and friends are here for me, my puppies are settling into the new condo and routines, and the condo is getting closer to looking like we live here for real. We’ll get there.
Something that is hard to understand for some, but is very important nonetheless, is that I feel fine. And while that is something I’m pretty sure everyone says to make other people feel better, it’s still true. As I described before, I broke a toe on my foot, (fully healed), I broke some little pieces of my shoulder, (still healing), but otherwise I’m fine.
My uninvited guest is currently under control thanks to modern medicine, and my treatments in progress are hopefully going to keep it that way.
Time to get some sleep.
To be continued.
Was a good weekend, even if GMU lost in the final A-10 conference match to VCU, (where my youngest sibling graduated from, even if they weren’t into sports). Went to all 3 games with family, and had a great family dinner on Saturday, including family that took the train down from Philly just for the afternoon/evening/night.
Debi day, for reference, is a lifelong (essentially) friend whose birthday happens to fall on St. Patrick’s day, so we’ve been celebrating in various ways together for something like 25 years. To include opening/occupying bars for the entire day, but that’s been a few years. We were younger then, heh.
My radiation/chemo was supposed to start tomorrow, (3/18), but apparently my insurance company decided that wasn’t how they wanted things to go, so it’s been pushed to Thursday, (3/20), with a giant question mark hanging above all of the related appointments that had to be pushed in response. I’m so glad I have multiple people that also are now hanging around under the question mark in question, because I can’t tell them with any certainty what’s going to happen next.
Speaking of the chemo, the nurse practitioner that told me about the delivery was very certain at the time that someone would have to be home to receive it. Friday, the 14th, I received multiple notifications that the package was out for delivery, by UPS, about 90 minutes before it was physically possible for that to be true, (unless it was shipping from a time zone somewhere in the middle of the Atlantic Ocean), and then I saw the guy deliver/drop the box at my front door about halfway through the GMU/GWU game. While we were at Capital One Arena in DC. Definitely not home. Oh well.
When we got home that night, I moved the box onto our coffee table, where it sat for the next ~24 hours. I wasn’t ready to face it quite yet. When I did eventually open it, it was just a lot of pill bottles, and it still is just that, it’s just in a desk drawer now to keep it away from the puppies. I’ll have to open them soon… maybe Thursday?
To be continued.
So, about 6 weeks before I went into the hospital (2/21), I woke up about 5 in the morning. My left leg was thrashing around out of control, and I had no idea what was going on.
At some point, I kicked the wall/bed frame/something, and slammed my shoulder into something as well. Broke my 4th toe on my left foot (mostly recovered now), and broke some small apparently important pieces of bone in my left shoulder (still recovering).
I also made a mess, (urinary incontinence is the technical term), but you can look that up if you want. I had to do laundry, I’ll leave it at that.
So, I took care of my sheets, ignored the rest for the most part, got dressed, and went on with my usual morning routine. Told my roommate I had a rough night, (alcohol was involved, as it was every night at that time), ordered breakfast from Wendy’s, drove there, drove to work, and did my usual job delivering pharmaceuticals throughout the Greater DC Metro area.
As it turns out, I could/should have made better choices, legally at least, but when has that ever stopped me? I didn’t hurt anyone, so at least there’s that.
I need a shower, today’s going to be a good day. Going to the GMU/GWU basketball game, A-10 tournament quarterfinals, thanks to my family. And no, I’m not driving any time soon, if ever again.
To be continued.
Hi, my name is Michael Hatfield, and I found out a couple of weeks ago, (February 21ish, 2025, is when I went into the hospital for the first time), that I have what I’m calling an uninvited guest attached to my right frontal lobe.
The technical term is a Glioblastoma, or GBM.
Roughly 3 in 100,000 people are diagnosed with this fucking thing every year in the United States, from what I understand. So I won, or lost, the genetic lottery with this one.
It’s been called inoperable, because it’s attached to my Corpus Callum, which means that attempting to remove it would most likely fuck up something nearby. The closest candidates affect things like telling right from wrong, basic motor functions, and speech. So, you know, important things for basic living.
Also, GBMs tend to stretch their legs (or something), and spread out to everything nearby. Making them almost impossible to remove.
The SOC, (standard of care), is to blast them with targeted radiation, and blast me with chemotherapy. That all starts Tuesday, March 18th, 2025 according to the current plan.
I need to get some sleep, tune in soon for more updates to include how I discovered I had a problem, what I did about it initially, and what I’m doing next. I’m here to fight, and I expect it to be a wild ride.
To be continued.