Wow, this typing thing is harder than it used to be. But I have to just accept that, for now.
I’ve moved on from TMZ (chemo) to Avastin (infusion treatment) starting soon ™. I’m still on dexamethasone (let’s call it for now, it’s a steroid that reduces swelling (Edema) around my little unwanted guest. Which gave me control of my left hand (typing) and left leg (walking again) so I’m a big fan.
I’m still getting around with a walker (and some supervision),and a transport wheelchair (lighter weight and can go in Melissa’s trunk.
Going to cut this one short, because this typing shit really is hard work right now.
This is Melissa, Mike can’t type for shit right now, so things are going great. Here’s what he has to say:
My tumor is spreading, so the treatments I’ve tried have not worked. I’ve seen all the doctors, and I’m back on steroids (for better or for worse) and Optune. My left leg is about useless and not listening to me. Same with my left hand and arm. All of this makes using the computer very difficult. And I’m in a wheelchair and/or a walker.
My family from Germany came to visit, including my 3-year-old niece, 19-year-old niece, and 15-year-old nephew. My brother and partner have also been a huge help. The oldest of us (me, Keith, Vivian, and Melissa) went to the Barenaked Ladies concert at Wolf Trap on Wednesday night. Transportation was an issue, but it was handled well by Keith and Abdul, our cab driver. Wolf Trap was very accommodating, and Barenaked Ladies put on a hell of a show. They put me in an aisle and got us all out of the weather.
So, I started Optune yesterday. I just googled it for pictures, since I’d been telling other people to do that but I hadn’t done it myself, and the results are pretty close to accurate. Picture the queen Borg from Star Trek, and you’ll be on the right track/trek. (See what I did there?) Those of you who saw my latest FB profile picture saw the shaved head, that was step one. Step two was to clean my mostly bald head with some alcohol (not that kind), and then apply 4 of these “arrays” to my head. They’re not very big or heavy, which is apparently a recent development, and they have wires coming out of them that plug into a box. I mentioned black/white in my last post, and that’s still accurate, it’s just a lot easier to get it right since my partner will be the one doing it. Trying to line everything up myself would be an absolute nightmare. So, yet another reason I’m thankful for all of her help through this roller coaster ride that is my life now.
My neurologist that I saw last week wasn’t familiar with the product, since it’s fairly new I guess. He still wants me to do a multi-day inpatient procedure where they do the EEG lead thing (lots of wires) and then try to trigger seizures through various methods (sleep deprivation, good luck with that one, flashing lights, okay, and hyperventilation, whatever). I’ll have to tell the Optune people about the 3 days off or whatever it ends up being, but I’ve been told that’s fine.
In the meantime, I have a bunch of things stuck to my head, a bunch of wires wrapped up and hanging off of my head, a bunch of batteries I have to change every 3-4 hours, and my little uninvited guest isn’t allowed to grow, or something, due to some electrical pulses or something. The tech is way beyond me, for sure. On average it’s supposed to extend my ticking clock by 4 months, which sounds great, one day in. 4 months from now, I might have a different opinion, I already think this thing is a pain, but not actually painful, it’s just inconvenient. I guess we’ll see.
My trip to Germany has been postponed/canceled due to all of the seizures, so the German family is coming here instead. We’re still figuring out what exactly the plan is, but it should be a fun week or two.
And my typing has gotten a little worse. Thankfully autocorrect mostly covers for me, and the fact that I already fix my own typos and always have, but it’s pissing me off. And I know there’s nothing I can do about it but work through it. And I am, for now.
June 2nd, an otherwise lovely Monday afternoon, I’m casually doing my thing at my computer desk, probably playing the part of Bob Barker, you know, “Spay and Neuter your pets”. My one job I’m still doing, besides being a pain in the ass.
On comes that weird feeling where my left limbs decide they’re fucking useless, and I follow my God-given instructions to get my ass on the ground. I did manage to grab my Nayzilam nasal spray, (not an inhaler, per my neurologists office staff that I’ll get back to later), on the way down, though. Which was the reason I was marginally successful at what came next. I tear it open, (somewhat challenging with one good limb/hand), shove it in my nose, and push the plunger. It does its thing.
Then I get a little more comfortable on the floor, still without the use of my left side but the drugs are working, and yell at my phone with no real confidence that I knew where it was. “Hey Google. Call <Partner Mobile>”. I’d tested this multiple times before, and it almost always fucked up and asked me which one of several numbers I wanted to call, but this time it got it right. And it turned out my phone was in my left front pocket, so relatively easy to get to once my left arm woke up a little.
We had a lovely conversation, during which I told her I was basically a crash test dummy on the floor, and she decided she was leaving work early to come help. ETA: One hour, not great.
So, I use the powers of my voice to yell at my phone again. “Hey Google. Call <Longtime friend who lives 15 minutes away>” It worked again, first try. Amazing. We had a lovely chat, and she decided I needed more help than a phone call, so she was off to her car, while staying on the phone. She’s under some restrictions of her own, not my story to tell, but she’s allowed to drive short distances and so she did. By the time she arrived, my left arm was functional, I had my phone in hand, and I was able to unlock the front door remotely. Go ADT. My second/third seizures followed shortly, and then the 4th one hit and we decided 911 was the next answer because she wasn’t picking my 200 pound ass up and I wasn’t moving myself either.
Off to the hospital, again, and then everything gets a little blurry. Ativan is some amazing shit. Their primary goal was to stop the cluster seizures, which I was definitely a fan of, but in the process they put me on the moon. I allegedly ate some dinner, and then some more meals over the next couple of days, but it’s all really a blur. Wednesday at some point I was allowed to leave, which I was also a fan of, but I had to take a walker with me. Not a fan. It’s exactly what you’re picturing, the shiny silver one you see at retirement homes where people put tennis balls over the ends to avoid scratching the floors (not yet, if you’re curious). And I use it, to get around, but I only unfold one of the legs so I can treat it as a tripod and basically have it for added stability. And that way I still have a hand free to hold (whatever).
Enough rambling for now, the neurologist’s office staff I mentioned made a point of telling my doctor that I was at the wrong fucking hospital in response to a message I sent them, so they scored some more points in the shit department, but they did put in a prescription for a new drug, Clobazam, and even got the right CVS this time, so at least there’s that. Also, they got a little salty about me calling the nasal spray a rescue inhaler, but whatever.
Since then, I’ve been hobbling my way around my condo, my left ankle decided it had gotten over whatever I did to it like 2 weeks ago, and my partner and youngest sibling have been taking care of me as best they can. I’m a shitty patient, which shouldn’t be a surprise to anyone reading this. I think I’m nicer to the nurses in the hospitals than I am to the people close to me, but that’s probably something I should get into with my therapist instead of on here. I talk to her on Thursday, I think.
One thing nobody really tells you about is the physical problems that go along with this stupid thing in my head. And by that I mean I expected seizures, hell they’re the reason I found this little fuck.
I didn’t expect to break my shoulder during my first seizure, or for it to still hurt like 4 months later. Shit, has it been that long? Something like that.
I didn’t expect to break one of toes during my first seizure, see above. At least that healed relatively quickly, and by that I mean sometime in March.
I didn’t expect to (????) my ankle yesterday morning. I’m still figuring out what, exactly, I did, but it still hurts. Walking/shuffling around my condo does nothing for my confidence, and fearing a fall 100% of the time is a little terrifying. Pair that with my ever-present concern about seizures, and my life is a mess. Moreso than before.
I’m headed into night 4/5 of my new Chemo regimen, which is 380mg for 5 days, compared to 150mg for 42 days before paired with targeted radiation. Did I mention the radiation created some shiny bald spots that I hadn’t even noticed until my partner pointed out the one on my right side, and then I found on my left side? Probably not. They’re so smooth, for now at least. And they might grow back in at some point, and might be green/red/purple/who knows. Or maybe just curly. Doesn’t matter much, see my next paragraph.
Mid-June I’ll be starting Optune. Best as I have determined/read/etc., I’ll be shaving my head every 2-4 days, washing it more often than I ever have, drying it off, and placing 4 “arrays” on it, one on each side, one in the front, and one in the back. Apparently you are allowed to fuck up which one goes where, so long as you hook up the cables in the right place. And you can fuck that up, too, so long as you hook up the cables to the matching wrong place on the power box or something. Clearly I’m optimistic about all of this. Then you hook up the power box to something else that might be battery powered, or might be plugged into the wall, or something, and it zaps this little fucker in my head every couple of seconds to keep it from growing, or reproducing, or something. I’ve heard the technology is amazing, I’m just still wrapping my head around the concept. And I love that phrase, as anyone that’s been around me much recently will tell you. Wrapping my head around it. Get it?
Seizures suck. Had a mid-level one on Saturday night, after a couple of pretty good birthday dinners on Thursday, (Sushi), and Friday (Filet, shrimp and scallops).
Spent Saturday daytime cleaning up the yard, (two dogs, doing what they do), then mowing the yard, then fixing dinner (Chicken Curry, Hello Fresh). Finished making dinner with a little help (plating mostly), sat down to eat, and off I went to seizure land.
I knew it was coming, I asked for supervision/rescue inhaler which was provided, and I lost control of my left side, basically. As the paramedics arrived, (dogs and cat secured in the bedroom), I was able to use my right arm to lift my left one, (under duress), but otherwise my left side was pretty much useless for a while.
After I was in a room in the ER, (they called it semi-private, the ‘door’ was a curtain), my left leg eventually consented to my lifting it under my supervision. And that continued to get better over time.
They did the usual stuff, vitals, ECG, supervision, stroke test (smile for me), etc. And then they scheduled an MRI for ASAP. Which, as it turns out, was not soon at all. The MRI tech was in Maryland somewhere, and due to recent storms, his route to the hospital was a mess, just like the roads and, as it turns out, the hallway next to the MRI room itself. Towels, blankets, etc. It was also late at that point, like midnight. MRIs are not fun, as it turns out (my last one was in Alexandria hospital and I don’t remember at all). Very loud, lots of banging and crashing sounds, and you have to be totally still in a tube for a long time. 0/10, would not recommend.
After that, my ER doctor talked to the radiologist, they agreed my MRI was stable compared to my last one with the exception of the evidence of the biopsy, and I was cleared to go home. Good news, I guess?
I sent a message to my neurologist’s office on Sunday afternoon, which led to a phone call this morning (Monday), which led me to believe the staff in my neurologist’s office leave something to be desired. How fucking hard is it to get the address of a CVS correct, given multiple attempts and a dropdown list? I even gave them the address in a message, and on the phone. They still got it wrong. Twice.
Kids, if you want a good career path due to severe lack of them, neurologist is a good choice. Although by the time you get there, the country may be on fire and EMT may be a better choice, who knows.
Just doing my thing, living my best life, or whatever the kids say these days. I am very glad I’m in the condo that I bought right before all of this shit started, so I don’t have to answer to anyone.
Except for the HOA, and this lady that decided to take on the challenge of representing the HOA for our neighborhood. And then she met me, (and my real estate agent, who loves this shit).
So, a couple of weeks ago, she sends out a letter, via email and website post, complaining about people throwing trash over their balconies. In response, I take a bunch of pictures of the dumpster (fire) area, and the recycling (let’s call it) area, and the bamboo invading the ground next to the same, and fire it all off in a somewhat agitated email.
She tries to mansplain to me that I clearly didn’t read the document she attached, (written in part in 2003), and that she’s worked with other groups in the past (trying to justify her existence and credentials), and that it’s somehow my fault that the dumpster (fire) area and the recycling area are fucking disasters.
We go back and forth a couple of times, with me providing more pictures of just how bad it is each time, and her telling me that she’s done this before, and related.
Then my real estate agent decides to jump in and offer her thoughts, and suddenly the area’s cleared out for at least 30 seconds. They even took the bamboo to ground level, which still won’t fix the problem, but I’m sure they felt better about it.
It’s already gotten bad again, specifically the recycling area, but they tried ™. And I’m sure someone felt better about cleaning it out for those very important 30 seconds.
As for me, I did 6 weeks of what they called targeted radiation, paired with 6 weeks of nightly doses of chemo. The radiation was a process where I had to get to Alexandria cancer center every morning by roughly 8:30/8:40, shout-out to everyone who helped make that happen, then I’d lay down on a board for like 15 minutes wearing a hockey mask (I’ll take better pictures later), while these machines rotated around my head and blasted away. The room was cold, and warm, and in the middle, it varied by day. They offered warm blankets which helped, sometimes. They had a towel setup to support my left shoulder, (broken, see previous posts), which helped a little. And then there was the music.
It was Sirius XM, and only a little under their control. I would ask for them to turn it up on a regular basis, which they normally heard. The music selection was all over the place, but again it was Sirius XM so they mostly just picked channels. Some of the selections were great, others were less great. But as long as they were louder than those machines, it was all good.
The chemo was in capsule form, and honestly never really did much of anything to me. I was ‘promised’ nausea, vomiting, weight loss, loss of appetite, and related. I never had any of that. We made arrangements in case I did, trash cans in multiple rooms without lids, plastic liners, and I allowed myself an hour every night after I took the poison for any reaction. Never had it once.
Now, somewhere around the beginning of June I’ve been told I’ll be taking a much stronger dose for 5 days, and then I’ll get 23 days off. I don’t know what to expect from that, so maybe I’ll look back longingly on the nights when nothing happened, but who knows?
In-between, I’m just trying to take it easy, make sure everything around here is under control, yell at the HOA lady every so often, and do battle with the assorted insurance companies. More on that later.
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.
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.
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.