From Hospital to ... Hospital?

Got discharged from SkyRidge yesterday with wrong diagnosis which didn't end well. Amy drove me down to PSL today after coordinating with my oncology team -- this is where CBCI works out of. In good hands and confident we're on track to get me home safe, been a long goddamn week though.

Thank you all for the notes, visits and texts -- in a week I seriously thought was my last one it's meant a lot.

ICU at Sky Ridge.

Been in the ICU since Saturday at Sky Ridge when I was having trouble breathing and catching my breath. On the plus side it's not pneumonia, but they aren't sure what's wrong either -- best guess is sepsis (sp?). Been just laying here watching one organ after another freak out. That cancer life though! 

Damn near almost died Saturday night so that was certainly a life experience I won't be forgetting anytime soon.

Leaving New Mexico.

Another visit in the books. Beautiful day here and the new cancer facility is nice (and a hell of a lot closer to In-N-Out, so yay!). Missing the kiddo and wife though. Starbucks in the lobby is soothing my pain however.

Self-Prescribing some Marley.

There's pretty much only one thing to do when you've been sick for a week and hallucinating from the Mucinex overdoses, mentally / emotionally all over the place and trying to think through a Windows 10 clean install. Marley at the Stanley Theatre in Pittsburgh PA, 9/23/80, man.

"Forget your sorrows and dance ... forget your troubles, and dance ... forget your sickness, and dance, and dance, and dance, forget your weakness, and dance ..."

Not So Much With the Pizza Rolls, But ...

Clinical Trial Start.

So Cycle 1, Day 1 of the clinical trial.

Spent about eight hours at PSL waiting for Fedex to deliver one of the drugs, taking the drugs (14 pills, and then 3 later in the day) and then having an EKG and something like 7 blood draws (so they can see what's going on with the drug in my system, I guess?). No vicious side effects except a headache and this weird pain in my legs, both of which could be incidental or caused by shotgunning a quad soy latte when I was finally able to eat something 2 hours after taking all this crap. But not toxic CNS failure or anything so yay!

Mostly feel bad for Amy since I didn't notice until today that they upped my dosage of the corticosteroid they use (dexamathasone) back to the highest level, which in the past made me seriously roid ragey. We came up with a safe word tonight however in case I get out of hand, something like "I'll fucking shoot you if you don't calm down, you jackass."

Luckily she doesn't know where I hid all the ammo.

Accepted Into a Clinical Trial.

Having now had 5 different chemo therapies fail and watched my numbers round-trip to where they were almost three years ago, my docs have recommended a clinical trial. Got the news that I was accepted today (been doing tests for a week) so I start Tuesday. Seems a little surreal and somewhat scary since I thought we had a bit more of a pipeline to go through before getting into stuff like this. Ah well -- the things you do and put up with to stick around a bit longer for your kiddo.

Can't help wishing this trial was testing the efficacy of Pomalidomide with cheesecake and a latte instead, tho'.

Trial Information for ACY-241.