Uncertainty ahead

We met with both the Medical Oncologist and Interventional Radiologist today.

The cancer within the liver indeed shows progression, as expected from recent results 😔. How much (or hopefully how little) is unknown until further imaging is completed.

Paul’s surgeon said she’s admittedly “a little anxious” about his scans, but we need more information before panicking. So he's getting a ton more tests/scans over the next couple of weeks that will provide more clarity. 

Two possible scenarios:

1. Best case: The usual suspects (the 20+ existing tumors) as well as the new tumors are still confined to the liver and are all still Grade-1 (the “slow” growing kind that they have been all along).  

2. The tumors are still confined to the liver, but a potentially higher grade (more aggressive tumor/s) may have brewed.

(An additional scenario that includes spread beyond the liver, but not going to touch that one until we have any radiological evidence to suggest that is the case.)

Next steps:

• Back on treatment (injections) right away.

• A full-body Gallium-68 Dotatate PET-CT. (This is the scan Paul had in December of 2023 that pumps him with an unfortunate amount of radiation, but is necessary to see the full body and whole picture.)

• An MRI (should show more detail than the CT)

• Another MRI in two months for comparison

• A repeat 5-HIAA test (to check his serotonin levels)

• An Echocardiogram to check his heart (as this specific cancer knowingly attacks the valves in the right side of the heart and needs to be monitored.)

• Running more tests to check for potential ‘retroperitoneal fibrosis’ — a rare condition that can be caused by his cancer and might be causing his horrific, ongoing and relentless leg pain.

So for now... scans, tests + treatment until we have more info. If any of the tests show a jump in grade, or more progression over the next 60 days, we then have to consider more interventional procedures.

...

This was obviously very unexpected news 😥. We were sure after those horrific procedures Paul endured in Dec/Jan, that he would have at least a year of stable scans and some ‘down’ time. Not only did he only get maybe 4-5 months of stability, but three of those months were spent going through trial-and-error periods on medications that made him just feel absolutely awful in so many ways, and ended up not helping at all. 🥹

This poor guy just keeps going through every corner of hell, suffers literally every single day of his life, and just keeps getting back up, and keeps doing it with a smile on his face. He baffles and amazes me daily.

I'm a complete wreck. (Shocking, I know.) And Paul is an absolute rock. Half kidding, of course. He's obviously really struggling emotionally with the mind-f*ckery of all of this, but in pure Paul fashion, he was cracking jokes and laughing during the appointments, then quickly analyzing his options, running through the logic and accepting what is. He truly is one special human being 🖤.

As always, we are trying to live our best lives in between all the hell (some amazing concerts and trips), and we are of course SUPER grateful for those times and moments. Just wish he felt well during those moments, and that he had more time to enjoy life before things started ramping up again.

Thank you as always for the love, messages and support 🙏🏻. And especially for your understanding of us being so absent these last couple of years. This disease really has a way of changing everything about life, in ways we can't even understand.

Dayna 🩷