New Blog Page

Hey Guys, I've been working on this page for a bit. I'm trying to make it easier for tumor fighters to navigate my blog, and the tumor world. I'm pulling essential information to the front page of the blog so that newly diagnosed/newly recurrent tumor fighters don't have to sift through all of the posts to get pointers. I've copied and pasted my list below. If any of you tumor fighters (or anyone in general) have suggestions, I would really appreciate it. I know that I wish I would have had this information when I was originally diagnosed, it would have saved me a lot of trouble, headache, and disappointment. That's what I'm trying to prevent for others.

What to Know About Brain Surgeries

This is a list-in-progress of things I've learned throughout the past few years of fighting brain tumors (feel free to add suggestions in the comments section):

• You want a neurosurgeon/oncologist that is incredibly familiar with your specific diagnosis (subtype of tumor, molecular abnormalities, etc.). 
• You want a neurosurgeon that performs 300+ brain tumor resections a year.
• You want a neurosurgeon that is actively involved in clinical trials for your specific diagnosis/pathology. 
• Don't be afraid to email doctors, or tumor fighters with websites/blogs to ask questions. Especially if you find a promising clinical trial, look for the lead doctor's name and seek them out and ask questions. Doctors that are conducting clinical trials are very passionate about their work and are happy to help.
• After your initial MRI (with diagnosis) but before your surgery, your doctors should require a fMRI to make sure that your tumor isn't located in a delicate area of your brain.
• What is a fMRI? Click for information.
• If your tumor is located in a tricky area, the doctors may request a partially awake surgery to keep your healthy brain in tact
• What is a Partially Awake Craniotomy? Click for information. It sounds scary, but you don't want to lose any of your healthy brain, because once it's removed you can't get it back. Depending on where your tumor is growing, if your neurosurgeon doesn't map out your brain, and do an awake surgery when needed, they can cause severe damage to your language areas, your movement, heck, it could really damage you for life.
• If you have a low grade glioma, or doctors aren't sure, they should request a F-FDOPA PET scan to determine the mass. F-FDOPA PET scans are only available at top brain tumor centers. If you ask for a F-FDOPA PET scan and your doctors aren't familiar, or if they don't have the capability, ask for a referral to a center that does. You may have to travel for it, but trust me, this is your brain. It's worth it. This is especially important for recurrent low grade gliomas. A F-FDOPA PET scan can determine whether an area on a MRI is showing scar tissue, necrosis, or if it is active tumor growth. That is imperative when doctors are wanting to do another brain surgery, or are pushing for treatments like radiation or chemotherapy. You want to make sure that you truly have a tumor growing in your head before you damage your body. I have heard of patients going in for a second brain tumor resection only to find out after the fact that the image on the MRI had only been scar tissue.
• What is a F-FDOPA PET? Click for information. ("F-FDOPA activity may identify tumor not visible on MRI")
• Before you go in for surgery ask for your tumor tissue to be flash frozen instead of being put in the standard paraffin wax. That will allow your tissue to remain viable for immunotherapy treatments in the future. Also, ask that they don't use your tissue for testing, that it remain in tact.
• What is tissue banking? Click for information. 
• My most recent tumor is being banked at UCLA. It was flash frozen. It's a miniscule amount (0.17 grams compared to the 2 grams necessary for a DCVax vaccine), but as science progresses less and less tissue will be necessary for personalized tumor vaccines. A little bit is better than none. And if your tissue is stored in paraffin wax, which is the industry standard, it is useless for immunotherapies. 

Okay, that's all I can think of for now. Please leave comments with the things I've forgotten, I appreciate the help. This list is for the sole purpose of helping other brain tumor fighters. We're a small group, and I know that I've learned a lot from my peers.

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.

Scalpel, Skin, Saw, Skull

I've been mentally running around like a crazy person trying to plan this trip to UCLA. I have six different appointments already scheduled. I just got off the phone a little bit ago where the gentleman said that they won't schedule my post surgery pathology appointment because they will need to review the results and decide if they're going to recommend further treatment, like chemotherapy or radiation. Once they have their recommendation (hopefully NOTHING), they will decide if I need an appointment with Dr Liau or a specialist. Fingers crossed for just Dr Liau! Of course, I can always opt out of those treatments, but it's still a scary concept to acknowledge that the DNA of my tumor could have morphed into a higher grade. That's a very scary thought, one that only swims around the periphery of my mind, a possibility but not my current reality. It's important for me to not get caught up in the "what ifs." And anyway, I feel great! So there.

Can you believe I'm doing another brain surgery? It's almost exactly 2.5 years after the first one. That seems very quick, and yet, an entire lifetime. They're going to cut through my beautiful, unknowing, innocent little skull. They will use scalpels, a saw, and other tools. They will peal back my skin, pull off a portion of my skull. They will cut small nerves. They will dig around, separating the brain tissue and tumor. They will do all kinds of things, moving and removing things in the most intimate part of my body. They will be working on the area where my most inner thoughts and feelings, my genius and my ignorance are dancing. I speak of a brain surgery the way that most people discuss their grocery list, but here I am, getting quite serious. I guess it's time. After the last brain surgery, I never wanted to have to do another one ever again - and yet here I am CHOOSING do it. Crazy stuff.

I feel better than I have even from before the surgery, before the diagnosis. I hope that I don't have a major regression from the surgery, any type of set back - like death, or blood clot like last time - because I'm feeling fantastic, incredibly healthy, superhuman even :) I'm just so grateful for this opportunity, yet afraid as well. I mean, seriously, they're venturing into my brain. Yes. It's a big deal. I guess we'll just have to wait and see what happens. Gotta take risks in life in order to have success, and I do believe that this is an educated risk that very well might be the biggest success of my life. Why not believe that I can beat this? Why not believe that we can beat anything?

One of my favorite trees along Green Lake. I'm soaking up all of the beauty around the neighborhood, storing the images in my memory bank to fill me up while I'm gone in LA.

I love the flower memorial that has been continuously updated since they chopped down this sick tree along the lake. However, I'm quite confused because they're killing flowers in the process to recognize the death of the tree, doesn't that seem hilariously ironic?

The Time Will Come

I'm grateful for so much each day. Things pop in my head, and then I start smiling. It can be as simple as, "My house is so rad. It's full of daylight even when it's rainy outside!" Lately, though, I've been going for the big ticket items. My mind has been full of happiness thinking about how wonderful it is that I haven't had a seizure since August 5th (the day before my birthday - I was probably just too excited!). I haven't taken anti-seizure medicine since September 27th. And, biggest of all, as Danny and I were running errands today, I realized that I could have just finished last week as my first week of radiation, but instead, I'm happy and healthy and trying to kill this brain tumor with alternative means. I realize that I might have to do radiation (eventually - if there is no other option, and it starts completely growing like an even nastier weed), but right now I'm enjoying the ability to take this into my own hands.

Yesterday, my parents, Danny and I met with the other brain tumor fighter that has been taking the artemisinin. We met with her and her husband and we shared notes. We talked all about the different protocols, the different research out there, and we reviewed both of our pathology reports and all of our MRIs. It was fantastic and incredibly inspiring. Our friends have managed to completely shrink her brain tumor through alternative means. It's unbelievable. Although we had never met, there had been email after email for the past year or so. We combined heads and together, I feel like we can conquer this.

At first I was very concerned because there are so many different types of stage 2 astrocytomas (which we both share), I wasn't sure if we were matching apples to apples. But after sharing our pathology reports, our friend has the same type, along with the "negative for loss codeletion of chromosomes 1p/q 19p/q (can't remember off the top of my head which one has which letter). Anyway, my point is that I have those two chromosomes, as does my friend, which means that our tumors are more aggressive and signify a shorter lifespan. Anyway, after watching her scans, and seeing her brain tumor shrink and shrink, scan after scan, I knew that things were looking up!

Maybe surviving a brain tumor isn't just about luck, or fate, or genetics. Maybe, just as I was hoping all along, it might be treatable or even curable by using healthy choices, and by following herbal research. There just might be a way to treat a brain tumor with diet and supplements. Sometimes the supplements are in massive doses, but who cares! It could slow, halt, or kill the tumor. Wow. This is so big. I just have to keep positive about this process. I'm taking the safe side, unlike my friend who took some pretty substantial amounts (with no serious side effects), but I figure I can still up the ante at my next MRI if things aren't up to my liking.

I'm just so grateful to have this opportunity to squish this with healthy means. I'm forever indebted to our dear friends.

It is going to be so hard to wait for my next MRI in January. I want to start seeing results now! I keep telling my overzealous soul, "Patience little friend, there is no rush. Enjoy each moment, each day, each kiss, each hug, each laugh, each smile, each apple, each salad, each green smoothie, each new smell. The time will come." Each time I have to tell myself that little mantra, my core warms, my cheeks get rosy, I start smiling, and I feel lighter than air. It's the best. It's my favorite problem to have :)

Truly, how wonderful is it that I am not headed for week two of radiation in the morning. HOW WONDERFUL!!! ! ! I know my oncologist probably thinks I'm stupid, but I don't care. This is my body and my life. I will not give up on it, or take the easy, less effective solution. I will fight, I will laugh, I will live, I will not give up.

Divalproex Is The Devil

The past few days have been tough. The family has been researching different alternative medicine, different unusual treatments that are being used in other countries. We're lead to them by other brain tumor patients who have had success. It's wonderful, and yet at the same time I feel overwhelmed.

In the meantime, we're trying to get appointments with a neuro-oncologist to deal with my anti-seizure medicine. The side effects are too extreme for me. I'm grumpy almost all of the time, depressed for no reason. I'm trying to keep a happy face, but I'm just having such a hard time functioning. There are lots of other anti-seizure medicine out there, so I'm hoping that we can find a better fit. If I can't find a good fit, I might just get off the medicine and elect to avoid driving and other activities that would be dangerous for a seizure ridden person. I feel crazy. I'm definitely not myself. My radiation oncologist already told me that anti-seizure medicine (for a person with my diagnosis) may not even change a thing to avoid an episode. With that lingering in my head, I'm not going to lose myself in medication at this cost.

One more thing. I'm sure it's nothing, but I had an atypical mole removed on my chest and the pathology came back positive. I now have to go back in for more digging to remove the areas around the mole and have it sent for even further testing. I'm feeling fine about the results, especially after having friends share some scary stories about precancerous mole episodes, it's just not fun.

Normally I could shake things off, but right now I'm just in a funk. I'm funky. My vision is blurry, I can't shake my head quickly, I'm groggy, I sleep over 15 hours a day/night, and my eyes are watering, but I'm not crying about anything. I'm not sad, I'm just emotional. I HATE PILLS. Specifically, divalproex (depakote).