I'll try to keep this short—maybe.
- My dad—he’s 69—was just diagnosed with microcellular lung cancer this October. I guess we're looking at what's next.
- Started the PE protocol pretty quickly—knocked out all six cycles already. No regression, unfortunately—though I guess that’s just my luck, since about 80% of patients see decent results on their first try with this thing. Typical.
- Follow-up X-ray—showing some progress (though it’s subtle—at least things haven't gone totally sideways in my lungs, I guess).
now - mine
First off, there’s all this rage over how protocols vary from one hospital to the next—it's a mess. At the local community clinic, they stick strictly to the PE protocol, even though both the WHO guidelines and most major hospitals suggest scanning the endocranium at the same time. I guess consistency isn't exactly their priority.. 😠
Things are looking pretty grim right now—the brain metastases have progressed to the point where Dad’s become demented and delirious almost overnight. We had an MRI done privately back in March—since his oncology team at Mayo Clinic basically follows a policy of not even looking at the brain unless there's a neurological breakdown—and it showed multiple metastases, specifically in the left occipital region and some spots hitting the medulla. There’s one larger mass in that occipital area, which isn't the scariest part, though it is messing with his vision and causing light sensitivity. But those multiple spots on the medulla... yeah, those are tricky. 😢
It all passes eventually—even the stuff that feels like life or death to us right now, I guess.
Just so things don't get too "boring"—we had an episode last Monday. It started out as a partial—Jackson type—and then escalated into a full-blown grand mal. Honestly, it was pretty brutal to watch. Paramedics rushed him to the local hospital over in the suburbs, and I really don't even want to get into what his patient assessment looked like. My dad apparently has that paradoxical reaction to Diazepam—which isn't exactly unheard of—so he was super agitated after the seizure. He spotted me through the door, recognized me, and just kept screaming, "Angela Wright, untie me, get me out of here..." so I just sat there waiting. Eight hours. They watched him until they eventually had to restrain him—which, fine, sometimes that's necessary—and then once he calmed down a bit, they just sent him home?! No EEG, no consultation with a specialist neurologist, just handed him some anti-epileptics and said, "good luck." He finally fell asleep at home. 🙂 We ended up having to patch him up—legs and all—since he basically beat himself up while tied down... I guess.
Back at it again this Wednesday—though it was just Jackson having an episode. It was an emergency, so they didn't transport him further, but—surprise, surprise—they gave him Normabud once again. Even after we explained everything, their response was basically, "Well, it's possible, but it’s all we have and it's what we use for seizures." They left, and Dad ended up in this wide-awake, totally manic state for nearly 24 hours. He was doing these automatic movements—running around, brushing his teeth ten times in a row, grabbing a bar of soap like he actually wanted to eat it... you get the idea. So yeah, Dad is definitely "not all there." It doesn't help that he’s physically massive—he's 90kg and moves like a track star when he decides it's time to clean or lock the front door—so trying to hold him back is pretty much impossible.
Nah, I definitely went overboard—I guess. 😳 So, the gist is that since his last MRI, things have changed—there were no lesions in the upper half of the brain before, but now there's one in the frontal lobe. It’s probably on the right side, since the attacks seem to start with his left leg—or so a friend of mine who's a neurosurgeon tells me. And those frontal and temporal areas? Yeah, they're responsible for him losing things—to put it mildly. 😢 )
I know everything is going downhill—and I mean really bad. Honestly, the only thing getting me through this mess is how "wicked" he is. We’ve got a little one who just started walking and basically treats the whole house like a bathroom. He has these moments where he's actually coherent, though—like we'll be rambling about nothing, the news will be playing in the background, and he'll suddenly chime in to critique some Senator's statement by name. It’s a bit much to take in sometimes, but we're slowly settling back into a routine—working shifts, chatting with him—and I can see he actually thrives on it. Even if the topics are mostly nonsense. At the end of the day, I just want to see a happy face and bright eyes—as long as he isn't in pain, that's all that matters.
Yeah, we set things up with the nurses—he’s officially cleared for home health visits twice a week since he's mobile. We'll cover the rest out of pocket, though. Honestly, for the three of us to handle everything? It’s just too much—mentally, at least. And physically... well, it takes two people just to catch him when he decides to bolt.
..........
Anyway, sorry for rambling earlier—I just needed to vent somewhere. And hey, if anyone has tips on staying sane—mostly mentally, since all three of us barely got two or three hours of sleep this week—let me know. He can't stand being in the hospital, and I really don't want to deal with those screams like we did back at the ER 😢
One more thing. Normabell isn't putting him under, and they're telling us the alternative is a barbiturate. But considering how much that suppresses breathing, and he already has those DG lesions in his medulla, the doctors are pretty terrified to even try giving it to him...
