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.

Lifting By The Roots

Alright, I've been thinking since yesterday's post, that life IS better with hair. (Maybe not easier, but definitely better.) Long hair. Hair I would want. Not hair I settle for, not odd lengths, and weird styles trying to disguise my infinite scar. Real hair with a style that makes me feel like the person facing me in the mirror looks me in the eyes, and smiles. She's been smiling at me for years, my whole life in fact, but since 2010 her smiles were more of sadness, of tender concern. They were never complimentary smiles, not confidence building. I would lower my gaze and walk away, loving her, but knowing I needed a break from the friendship. Her gaze was too hurtful, too knowing. So I pulled away from her, turned my back. These days, though, I peek out at her as I walk by windows, and I know she sees me. I know she knows I'm sorry. Thankfully, she is forgiving, and we rebuild our relationship glance by glance, nod by nod, smile by smile.

Our baby cucumbers are beginning to hatch. This is the first successful attempt at starting seeds in eggshells. I'm embarrassed to tell you that the first batch from a few weeks ago was a disaster - I failed to rinse the eggshells before adding the soil. Within three-ish days there was quite the funk wafting around the house. I had no idea what was causing it, so I wandered around sniffing, and the closer I got to my baby seedlings the stronger the stench. I had to throw the whole thing into our compost. Oopsie. Rinsing the eggshells is a crucial step, good to know. Guaranteed I will never again forget to rinse the eggshells. Never.

In the spirit of green things, and vegetables, I need to share with you a major advance in tumor diet differentiation. What I mean is that there are very different needs between brain tumor groups. For example, tumors that take up contrast on MRI scans (usually stage III & IV) are using mainly glucose as food. For people like me, low grade tumors, according to newer research, our tumors mainly feed on glutamate. This is a big deal. Most research about diet is with high grades, so a lot of lower grade tumor fighters copy that research hoping it will also apply to them. (For example, the restricted ketogenic diet.) But that seems to be very misguided. Glutamate is an amino acid found in all protein containing foods (including grains). As you can see, the restricted ketogenic diet which focuses on heavy amounts of fat (often derived from dairy and/or coconut oil), moderate protein (limiting glutamate), and low/no carbohydrate (restricting glucose), could be the wrong choice for those with low grade tumors. Or is it? I don't know. I'm in the process of trying to figure out how to modify my diet and lifestyle to be healthy and happy, and not provide excess food to Herman, but it's confusing. I now have to read up on the difference between glutamate, glutamine, and the foods that can convert into them; how they convert; what foods are safe. It's a whole new avenue. A good side note is that I shouldn't feel guilty about my love affair with vegetables - they seem to look safe. Or are they? I don't know. It is going to be a serious switch. I already feel very divided, torn, confused. It's hard to oscillate so quickly, and deviate so far from what you considered a lifestyle. Carbs were bad. Carbs were feeding Herman. Now it's the protein. Eeek. It's as if I'm jumping religions; Bhuddism, Christianity, etc. These diets become my belief system on food, on nourishment, on survival. Changing it spins your world, lifting you by the roots. I feel like a little plant in a terrible wind. Will it ever subside? Will I ever find a safe nook to just grow?

Obviously, research is constantly advancing. At the same time we find old research that tells part of the story, then we piece things together, and it never ends. Each time we think we have a stable, solid plan, we find more information, giving us new directions to explore. You can't take much time off of tumor fighting, you'd miss too much. You have to be out there, reading, putting two and two together, connecting the dots. I know I'm constantly referring to my friend Stephen (Astrocytoma Options), but I'm telling you he is an invaluable resource. He always takes the time to answer my questions, he directs me to new research, he is a northern star keeping on course. Recently, he added a spot on the AO website where you can submit your email for notifications and new links every time he adds updates to the website. It's fantastic! It's perfect for brain tumor fighters, we're notorious for being forgetful, or accidentally never following up. We have the best intentions, but we have literal variations of brain damage (depending on the individual). That's how doctors classify us. Brain damaged. It sounds crazy when I say that out loud, but it's true. If you're fighting a brain tumor, or perhaps you're researching for a loved one, you will love the updates. It's like having a specialist in your pocket. Research doesn't get much better than that. Just so you know, since I'm a walking, talking advertisement for AO, I want to stress that it's all my voice, my words, my thoughts. Stephen never knows when I post about him until after the fact. If anything, he's incredibly modest and maybe even embarrassed about how I go on and on about him, but I get so excited to share with you guys. He's such a valuable resource, and I want to spread the word so that you can benefit from his hard work.