Medical Liquids

I've got all my pills, all of my liquid supplements (even the venom), in my fancy new travel cooler, and I'm ready for my flight to NYC for my Newcastle shot. I have a doctor's note for my liquids, and I checked the TSA website so I should be fine. It's exciting to think I can keep on my schedule with dosing while traveling.(For the most part anyway, I refuse to do nasal venom drops on the plane.)

I am so grateful that I'm able to travel solo, and that I'm getting these shots. I have a few questions for additional supplements/medications for Dr C. Hopefully, he'll be as excited as I am about the info.

It's always tricky with glioma cells. If you hit them too hard with treatments they morph into more agressive tumors. But if you don't hit them, they turn into more aggressive tumors. It's all such a guessing game. You never quite know what to do to maintain, or keep things at bay. We're always searching for that fine line. I'll never give up, though. There are people doing research all over the world, all I need to do is get my spider web out to other fighters, other researchers, and other problem solvers to bring it all together into on concise plan. An ever evolving plan, but a plan nonetheless.

Brain Activity is Overrated

Alright, alright, alright. I may have overreacted. I have a tendency to lean toward conspiracy theories, and lets face it, I have definitely been manipulated (given half truths) by doctors which gives me a general distrust of the whole lot.

After emailing around, I got someone at UCLA to forward my questions to the doctor who reviewed my radiology reports. The kind doctor called me Wednesday morning and he clarified as much as he could. That's how it is (as I'm finally beginning to grasp) with radiology, lots of grey area...no pun intended, lots of unknown.

As for the scan, it was explained to me that apparently, Dopa PET scans are read by comparing the basal ganglia (BG) which naturally uptakes dye. Any abnormal area is then compared to the brightness of the BG to determine if it's tumor. The doctor said that my brain, "Has substantially overall low brain activity." (Ouch. That doesn't feel like a compliment.) He compared my brain activity to his experience with other people's scans, and my previous Dopa PET from last October. Apparently, when you have low brain activity it makes your overall brain very dark on these scans. Abnormally dark brains make the contrast of anything in the brain very much enhanced. This brings me to the "ill formed", or whatever it was, thing in my head. The lit area in my tumor resection space is not bright enough to show up on the typical grading scale, which is great.

I asked him if chlorotoxin or Newcastle disease virus could uptake dye or show up on the scan and he had no experience or information on that. 

He explained that the difference between the brightness of the BG compared to my tumor resection area was substantial. They are not comfortable saying there's tumor or that the subtle uptake is tumor cells. However, as you may have guessed, they are not comfortable saying  that it's not tumor cells. 

I asked if he had ever seen a scan like mine with enhancement in the tumor resection area that didn't turn into tumor and he said yes.

"So....you're sayin' there's a chance....!" (movie quote...hey-ooo)