Mystery leg pain, happy things + next steps

This mystery leg pain 😣. Paul is SO grateful to have legs, and legs that WORK. But they just effing HURT him around the clock.

This continues to be one of the banes of his existence. Still zero answers or remedies after seeing tons of specialists, so he’s headed to the Mayo Clinic in Minnesota in a few weeks for yet another look and opinion. 

To recap for anyone new… basically, his legs consistently hurt regardless of rest or activity. They hurt whether he stands, rests, bounces at a concert, sits, runs. 24 hours a day, except when he’s sleeping. The pain level stays the same. It’s seriously strangest thing that we desperately need to get to the bottom of. It is really starting to wear on him. 

Just to be clear, he is not in agony. He’s obviously able to physically function. Not like he used to, but he can. If you ask him a pain level, he (humorously but sadly) always responds with “on a scale of 1 to emergency-necrotic-perforated-gallbladder-removal’?” If that’s the barometer… it’s a constant 4 out of 10. 

His MSK oncologists are stumped and referred him to a specialist at Mayo Clinic. Their current belief is that this is a rare manifestation of the cancer where the excess hormone secretion from his high tumor burden could be the cause. The more tumors, the more cancer, the more hormone secretion, the more severe the symptoms. 

Unfortunately, we can’t change the high tumor burden. All we can do is what we are already doing — procedures and treatments to try to ‘tame’ the tumors, reduce hormone secretion and slow the progression.

We hoped restarting treatment might help, but after two months, there has been no change (other than more side effects again). So… more tests/scans/appointments in the coming weeks. Plan of attack to follow.

We ended up having to leave a concert halfway through recently, and he was BUMMED. He just felt so defeated. In instances like that, he says he feels like ‘the cancer is winning.” It’s heartbreaking to watch him in these moments 🥺. But again, can’t express enough… we’re super grateful we were even able to squeeze in the happy chunk of time before it 🩷. Some patients can’t even get there to begin with. 

Which brings me to the good stuff : 

He has legs. He can wipe his own butt. (Yay for me! 😅) He’s able to walk. Jump at a concert. And he can way too easily RUN away from me at 7mph if I’m looking for a hug 😒.

We had a BLAST seeing Limp Bizkit (yea, you heard me… L I M P Bizkit!), Metallica at the Sphere, and (half of) the Jack White concert. He had some SUPER genuine smiles on his face, and some “I’m in so much pain but trying to ignore it” fake smiles on his face. At least when he’s doing these things, he’s distracted enough to not focus on the pain and I see some spark and joy back in his eyes 🩷. The look on his face walking into Metallica at the Sphere is one I’ll keep engrained in my brain forever 🥰. I just wish I had captured it on camera.

Will update after scans and Mayo Clinic visit.

As always, if you’ve made it this far, thanks so much!

Dayna 

Us in the Black Box at the Sphere before Metallica show 🥰

Before an incredible dinner and evening in Nashville 🥰