A journey that's anything but boring

I've had two checkups since my October appointments. First off, the radiology report from the October spectroscopy MRI agreed with what Dr. No Naps said, stable and indicative of post treatment effects. Just take my word for it that this is a good thing. I also had a scan (a regular MRI) in December, that came back inconclusive. Now, hold your ponies and don't freak out. This isn't anything new. We've been down this road and know how to navigate it. So...hear me out. I had my first surgery February, 2016, followed by radiation and chemo. "Post treatment effects" can show up for months to a year after that. Basically, if the radiation and/or chemo kill cancer cells, the dead tissue can sit in there. Since they are dying or dead, they are "leaky" cells and show up on MRI and other scans in a manner indistinguishable from tumor. In late 2017, there were a couple of indeterminable scans, so we did the spect MRI and it said mixed treatment effects and viable tumor. Fast forward to September, 2017, and that's when we decided to do the second surgery, which showed mixed tissue (Thus, verifying the interpretation of the spect MRI). After that there was more radiation and chemo. I'm still taking the chemo 5 days per month, followed by 23 days with no chemo. I actually finished day 5 last night, it didn't go as well as I prefer, and I'm still looking for the driver of the truck that apparently ran over me again and again while I slept. I'm fortunate to have both Jason and my mom to take care of me. They don't even complain when cleaning up my vomit in the middle of the night. Every time I go through this I think and then say aloud, "I don't want to do this anymore!" But then in a few days I always feel better and take it like instructed after 23 days off. 

So...at the December appointment, after seeing cells that "light up" in the regular MRI and not being able to conclusively say if it's tumor or dead cells, the radiologist suggested a PET/CT scan. The PET scan uses a contrast dye that mimics glucose and fools tumor cells into lapping it up at a very fast rate. During the scan, they will shoot me up with this dye (unfortunately, I hear there is no euphoric feeling from the shooting up) and then watch the rate at which all of my brain cells lap it up. Scar tissue and dead cells will not be able to use it, healthy brain matter will use it at a low rate, and viable tumor will feast like Mr. Creosote from Monty Python's Meaning of Life (if only the cells would then explode like Mr. Creosote). Honestly, I'm not worried so none of you should be worried either. Jason has wanted a PET scan for almost 3 years, so he's all into this. Personally, my own nerd psyche got very excited the first time we did the spectroscopy MRI, so I guess I can identify with how he feels. As I'm always looking for reasons to appreciate whatever life throws me, once again I'll just say this journey is a great lesson in science and modern medicine (among other topic areas). The PET scan is scheduled for January 8-9, 2019. I'm not as excited as Jason, but I guess I'm looking forward to having more conclusive data. I'm sure that Dr. No Naps is also because he's always belly aching about how my GBM doesn't act "like it should"  when you compare mine to the normal base rate for other patients. This basically means that since mine never grows giant within a few weeks, and since they don't know what is damage and what might be a few viable tumor cells, they don't really know what to do next. The best news is that we only discussed a third surgery as something that might be necessary way down the road, once we know more. I'm now reading a book by Pema Chodron called, "Comfortable with Uncertainty" in an effort to calm my anxiety a bit. Stress is certainly no good for any health issue, especially cancer.  

 Getting back to the chemo issue, Dr. No Naps said that, depending on what we see in the PET scan, we may change course. My team is looking for a clinical trial or other alternatives. Also, speaking of Dr. No Naps, earlier in this journey Jason suggested that we gift him a lab coat that says, "Dr. No Naps." Jason did some digging, figured out the font and phrasing of his MD Anderson lab coat, and ordered one that says, "Dr. John 'No Naps' deGroot" in the same font as his official coat. The nurse said he'd just gotten back from vacation and that he was more excited about the lab coat than the vacation. Then, in December, she told us that he's been introducing himself to new patients as "Dr. No Naps." He gets me.