Palms Up

I've been on vacation these past few days as I research and post. My own five star spa. Dan drove me over to my parent's house, over the mountain passes, past the thick west side clouds breaking through to pale blue sky and the sun bleached hills. It's already summer over here, weather in the 80's. The best kept secret of Washington state. My parents are on a road trip with friends, so Dan encouraged me to take advantage. It was a major ordeal to pack, not only the planning for all of the treatments, but also planning for groceries. My mom's car is parked at the house, and she told me I could use it, but I have yet to drive again since the seizures, and I'm not interested in pushing it, so I knew I needed to bring everything I could possibly need. Just as life goes, though, it all happened during another dietary shift, so I don't have enough stuff for my green drinks. I'm pitifully rationing my last avocado making my green smoothies really runny. Oh well. There are worse things in life.

It is so peaceful here. I feel so free. The house is bookended by vacation homes, and since it's the middle of the week, I've got this wing of the neighborhood to my whimsy. I've been gardening around the patio in my nightie, and jogging up and down the hill to the river in my bathing suit with Emma. In the mornings, I've enjoyed a sloppy version of yoga (or glorified stretching) on the gazebo overhanging the water. I do it with my headphones, my own dancing yoga party. I stretch my arms out to my side, palms up, jutting my sternum to the sky, and inhale a life breath, my body smiling. The term "life breath" sounds so cheesy, but it's the best way to describe it. I watch the wisps of white patches ribbon across the baby blueness. I'm all yoga deepness, and Emma is all acrobatics.

I wander back up to the house and put Coldplay's, Magic video on repeat, and I get to work. That's the beauty of being alone, you can do annoying things like listen to the same song hundreds of times in a row. When my head feels like it might explode from the research, I sneak out the side door with my headphones and slip into the hot tub. I read a book, or just sit in the soothing water throwing a tennis ball for my lady friend. She's my sidekick. She loves the dance parties too, doesn't even care if she can't hear the music.

Dan should be here in a few days. I can't wait for him to get to enjoy the privacy here. Our home is literally on the sidewalk. The house is on a triangle lot and two of the sides are literally bordered by people walking by. Just windows everywhere and curious eyes constantly. I have to wear real clothes because people are always peering in. We call it our fishbowl (or in the winter it's the igloo). I am in heaven wearing jammies right now. I'm in heaven with my silly dance moves. I am unabashed. I am carefree. It's this perfect juxtaposition of serious mental taxation at the computer, and outside the french door it's sunshine, cool breeze, and the sun on your skin. I feel like a unique flower getting the sustenance of knowledge and the nourishment of nurture. I feel myself growing.

From The Darkest Place Comes Empowerment

Still trying to wrap my mind around glutamine vs glutamate. Boy, I didn't realize how easy I had it back in the days of the macronutrients of the restricted ketogenic diet. Thankfully, Stephen sent me a quick summation a few moments ago saving me from my dark rabbit hole of searching, "Glutamine is an amino acid that circulates in the blood at high levels, and glutamate is derived from glutamine by one enzymatic step. See the attached diagram. The cell can take in either glutamine or glutamate. Glutamine can be converted to glutamate, glutamate is converted to alpha-ketoglutarate, and the IDH1/IDH2 mutant enzyme converts alpha-ketoglutarate into 2-HG, which accumulates to high levels and causes tumorigenesis. IDH-non mutated lower grade tumours might have different metabolic needs."

Do I understand it now? Kind of. I think I'll need to keep reading it and rereading it in order to cement things. So glutamate is not in foods, but glutamine is. In the body glutamine can convert into glutamate which converts into that alpha thingy and my IDH1 mutated tumor will change that alpha thingy into 2-HG which causes the tumor to generate more tumor cells. Bad. Okay. Next step, I need to memorize that alpha hyphenated word (shouldn't be too hard since it starts with keto and glutarate is pretty similar to glutamate just switch the m to an r...I think I'm onto something) and intimately understand what 2-HG is/does so that I can recognize them in research. (What about 2-HighGlutarate? Okay, just Googled, and instead of high, I'll use the legit term of hydroxy and slam glutarate (which was a good guess) on the end, which makes sense. Bam. Not too bad.) Is your brain spinning, too? That was very successful. I feel a little accomplished, as if I just traversed my own mental wormhole.

Now this is where pathology becomes paramount. If you're wanting to dabble in preventing your tumor from growing, you need to know what you're working with. Every single tumor's pathology is unique, which makes it difficult. However most all tumors are on the spectrum for various categories regarding mutations (yes/no), proliferation rates (%), GFAP (also a % I believe), etc. In rare cases, they may not even be that similar to other brain tumors, instead they may be more similar to a breast tumor or pancreatic tumor (just throwing those out there). You never know. We need to look outside the box for our treatments learning from like-pathology correlations. We really don't have much to lose since standard of care is essentially failing most of us. I remember when I looked into my pathology for the first time, it was terrifying. It was depressing. It was the darkest place I had ever looked. But I pushed on because I wanted answers. I don't want to waste my time, my energy, my resources, on things that will not aid in my survival. Reading the pathology from the second brain tumor was equally scary, but I'd grown tougher skin. As they do, things had changed. The proliferation rate was higher, among other things, which of course is sobering, but it doesn't mean that you give up - panic a little but never give up. I'm learning more than ever, and constantly feel like I can almost touch a cure, or at least stability. Guess we'll know more on that front in a few weeks. I can't believe the MRI is in ten days.

Here's a link to the AO page that discusses the glutamine quandary, I forgot to include it in the last post. Don't forget, it seems specific to IDH mutations, not wild-type.