The Universe and Her ODD

So basically what happens is sometimes I bitch and moan on here and then the universe hauls ass to prove me wrong.

Since my last post about the six phone calls and inability to make any appointments, I've got a specialist consult for the pancreas set up and I finally got a hold of the hep's secretary and know what voodoo woodoo I need to do to make an appointment...three months from now.

Since the universe seems to be on a roll...

I never win the lottery. Ever. Never ever. A billion dollar lottery ticket would never happen to me. And my tumors would never spontaneously disappear. And everyone knows if you grow a lot of tumors, one of them is always cancer 100%. 

Let's see what she does with that.

Also, with regards to the pancreas specialist, since it seems I'm saying one thing (wanting a break) and doing another (making more appointments)...

1. Things are fluid. These posts are a small snapshot of a small increment of time and tend to be my reaction in that moment. There are moving parts that continue on and things and information change. I hope no one would begrudge me that?

It does create some inconsistentcies in the narrative though. I try to add clarity as much as I can as to why things change, but sometimes I don't see the forest for the trees.

2. The sooner, the better with pancreas stuff. I knew this, but I was trying to go for the break anyway. I wasn't ready to accept a change in agenda. However, the economics are undeniable. Early detection can have a very good prognosis. No one should waste an early warning, especially when it's something as serious as pancreatic cancer. 

I'm trying not to be dumb for the most part, but keep in mind, I'm just a flailing ball of stardust, so it's probably going to be a bumpy ride.

3. This was all sparked because I was uncertain if I would have any continuing care from the hep. It seemed prudent to cover my ass (or pancreas as it were) and not let myself become lost in the medical system yet again.

Unfortunately, this means I have to set up the third opinion as well. Upside: this way I'll see all my options and I can decide from there where I'm going to go with this. Downside: even more doctor appointments.

The rich irony is the one pancreas doc hitting my radar is someone I saw back when the liver tumors got real (if you'll recall they kept trying to blame my pancreas which is why I started there). Their pancreas research looks promising and may be useful for my case BUT when I met them five years ago they were a giant asshat who wanted to blow me off as having IBS. 

Like, they literally breezed into the room, sat down and the first words out of their mouth were 'you have IBS.' They had already dismissed me before they'd even seen me.

The only reason I got the MRI that finally revealed the full scope and severity of the liver tumors is because I responded with, "Cool. Is IBS why I can't eat, why I'm spiking a fever, and why I have new lesions on my liver that weren't there before?"

It's scary to think what would have happened if I hadn't asked that question. That it's down to the patient to manage up so the doctor does smart things. 

(Spoiler: I don't have IBS. I have never in my life sought out a doctor to complain about pooping beyond bile salt dumping after my gallbladder surgery. That hospital system has a weird IBS fetish that has managed to infect the entire department when it comes to women. My male relatives with their rare GI shit are treated completely differently, as in they managed to successfully get all their care at that system without ever hearing the letters I B S, a feat I have yet to achieve. I always have to bounce to another system. It's their damage, not mine.)

When the pancreas doc called me with the results of the MRI their voice was shaking and there was a screaming subtext of 'ohshitohshitohshitohshit' as they relayed the results to me. They knew they'd fucked up. Hopefully that was a wake-up call for them.

Anyway. So now I'm like...which doctor is real? Which one am I going to get? The one doing serious research or the one who has pretty shitty clinical skills and even shittier interpersonal skills???

And do I want to see them? Can they do a good job? Do I even get to be picky about this?

The other factor at play...there is no specialist clinic in my state for my diagnosis. I'm a little surprised as there are three major medical meccas in my state. It does get treated here, but the specialists who really wheel and deal on this aren't accessible unless I travel.

So I might end up having to navigate traveling for care. For the moment, I'll start at home. A whipple is a whipple and the hospitals here do a lot of those. The surgical treatment is standard, it's the decision tree as to when to do what that's nuanced.

On the teen front...co-op has settled down. The bigotry has receded. I don't know if it was some kind of  social display as the kids established the social hierarchy or what, but it's been quiet. And the teen is currently having a good time and doing things she wouldn't do in the absence of a peer group. This is what I was going for. Crossing fingers this keeps up.