Tap Dances in Clinical Studies

Today was just one of those days where life was throwing guillotines at my neck at warp speed. Just constant, random chaos and drama for no good reason. The world just decided it didn't wanna.

I managed to get everything under control and also enabled the teen to live her best life to boot, but man, am I beat. 

And then the dog snatched a chicken bone. Sigh.

So now we are on 'do we need to go to the vet ER?' watch.

This is the tricky part with rescues. You deal with the deficits in their training and life experience and whatever trauma on top of it. It's really hard to take an adult dog who will gulp down anything they find on the floor and teach them restraint. 

I pick up the floor constantly. In fact, I'd just picked up a screw I'd found in the dog bed (gotta love a never ending home remodel). Like, I'm on it as much as I can be. And we work with him constantly. He knows the words now. He just doesn't have the impulse control. He didn't get the 'parenting' or training he needed when he was a puppy and now it's a constant risk with him. We watch him like a hawk, but this time he was faster than we were.

Poor guy didn't even know how to go up and down stairs when we got him. He didn't know any words. And he was three-years-old. It took him six months to understand 'go see Teen.' It's hard to protect him from himself when he's so behind.

Like, if you've ever wondered how much trauma can really impact people, work with rescue animals. You'll see a wide spectrum. He's a very sweet, loving dog, but he's nowhere near as smart as he could've been. Our other dog is a rescue as well, but the dynamic is different. There was a lot of domestic violence in the breeder's home and she wasn't properly cared for, but we got her young and she's done well overall (other than breaking several of our bones lol). 

You should see them though, because they are the yin and yang of trauma response. One downregulates when stressed and becomes a lump unless they're scared, which then they adopt aggressive postures. We don't take this guy for walks off our property. He's too scared of everything and is too reactive to other dogs. It's not safe for anyone. So we keep him in a very stable, low key environment.

The other dog amps up and goes a 100 miles per hour; pacing, refusing to settle, won't sleep, hypervigilant, obsessive, hyperfocused. She's whip smart with the receptive language akin to a toddler, but with zero judgement (also much like a toddler) and she gets mad and petulant and destroys things. 

We actually pulled back on training with her because I was afraid she'd learn to open drawers and doors if we kept going. (And she can, in fact, actually open doors, but thankfully it's not a major issue. There's no payoff for her in our set up so she doesn't engage a lot with that behavior.)

It really goes to show how important the first year of a dog's life is (not to mention humans, but I think humans have a longer period of neuroplasticity across our life span, it's easier for us to change than it is for dogs).

ANYWAY, let's talk about the pancreas. I've been looking for clinical studies as I think I might be a good candidate for some research. 

So far, it's not been going well. First, all the pancreas resources and organizations are heavily skewed towards active cancer. Which I understand and I get, but they've been slow to incorporate those of us who are pre-cancerous when we're probably a good group to study for the prevention, progression, and early detection of pancreatic cancer.

So all the patient developed clinical trial resources don't incorporate patients like me. Like, I literally can't complete their screeners because precancerous isn't even an option. I am forced to select a stage if I want to see clinical trials. Which means none of the clinical trials for the precancerous stage are in their database (I presume, otherwise their screener would be different, yes?).

Also, it doesn't look like the trial information is getting updated as much as it should? I could be wrong on that, but that's my impression right now. 

And if you talk to patients, they just refer you to the same resources. Unfortunately, most patients don't make it and that's impacted the efficacy of the patient community. (Weird things I know about: Patient subcultures. Who knew that would be a thing with flavors???)

Meaning, I have to research everything on my own from scratch which is a huge pain in the ass.

But I found one. I reached out. I come up a tiny bit short on their requirements right now, but if things progress, I'll meet them sooner or later. They do actually want to talk to me so we'll see what happens. 

I just want to have the next steps kind of laid out before I need them. It's a planner personality thing. I find it less stressful and less overwhelming to be oriented in advance. Maybe that's my trauma response. Ha!

Also clinical studies are their own breed of chaos. The NIH was difficult to apply for and then they ghosted me. This other study I'm supposed to be in for the sleep apnea...haven't heard a peep from them. I was told there were funding issues. 

I think the general public assumes you just enroll in a clinical study and done. Ha. Nope. In my experience, it's always weird and sideways and they can be difficult to coordinate with. And for some of them you need your doctors at home to buy-in and it turns out those docs aren't always so supportive or interested in helping you. 

There can be some risk for them in meeting study requirements. For example, your doctors might have to mess with your medications to meet study requirements, which if you have problems, is on their head. So aside from outright asshattery, there are legitimate liability concerns in some cases. Also it's more work for them. Some docs don't want more work and are unpleasant about it. 

Like, everyone thinks you can count on your doctors or that there will be functional systems in place  to drop you into the exact right clinical study within five minutes of deciding you should find one. Because that's how it is in the movies, right? 

Ha. I wish! 

You know, everyone is blaming Covid for the issues in medicine, but all the problems people are having were already there. It's just not enough people were sick with the same thing to notice and then be a big enough group for their complaints to register before. Now we have this massive population dealing with the aftereffects of ICU admissions and Long Covid with lots of symptoms that cover a large range of medical specialties and a lot of them are from the...urmm...more aggressive, entitled side of our culture and they're not having a good time. 

And medicine was already problematic and pretty terrible with complex, multi specialty issues. So good luck with that one. We're going to need it. The idea most people have of medical care isn't reality.

Anyway, lots of good reasons to be proactive and work ahead as best I can. It's unfortunate that the whole clinical study system is so disorganized. I imagine a lot of patients can't figure it out which is a lost opportunity all around.