Saturday, May 31, 2014

Angels Everywhere

A guardian angel left a rainbow trail today in the middle of the afternoon. Don't see that very often. My photo doesn't even begin to do the colors justice. There was no rain, no precipitation whatsoever. I have no idea how it occurred, but it was magnificent. I've never seen anything like it. It felt alive, as it waved, and inched across the sky. A happy sailor.

According to the MRI tech this morning, we should have the radiology report on Monday afternoon. I have to head down to the medical records department at UW, and check it out, then fax it over to UCLA. I'll let you guys know how it goes. I have no inkling, no premonition, no intuition one way or another. All I do know is that it's a beautiful day, here in Seattle, and I am worn, exhausted. I am sitting, wrapped in a blanket, my feet wiggling as the sun licks my toes. It makes me deeply happy, can't help but laugh at the simpleness in this moment. 

Friday, May 30, 2014

Working With A Governor

You know what's crazy? You get diagnosed, you go through surgery, you recover, then the real test comes in living your life knowing that you have tumor cells in your brain, that the tumor (always) comes back (according to your doctors) then you start over again. Each time they dig in your brain you hope you wont die. You hope that the majority of your brain, the stuff that makes you you, will remain after they fiddle. That you won't be too damaged. You know before hand that you'll never be the same, no one ever is, but all you can do is hope that it's a minor shift. You go home, you fight, you research, you add treatments, you change your diet, you work incredibly hard. And at the same time, even though your whole life has been derailed, all of your dreams put on hold, except for a twinge of sadness here or there, you're just thrilled to be alive. You live your life revolving around scans and treatment, knowing each scan could be all it takes to devastate, that each treatment may not be enough. You battle fatigue, you battle the horror of seizures. And all the while, through it all, you're just happy to be capable of reading, and writing, and walking, and running, and laughing, and recognizing the beauty of each moment, of everything around you and most of all that you're able to fight. Cancer has a way of stopping the world from spinning. Everything happens at once, then not at all.

Tomorrow morning at 8:00 am is the MRI scan. Again they poke, jerking that needle into my vein, readying my body for the contrast dye that will tell all of my brain's dark secrets. Each MRI, each scan, is the biggest test of my life. Essentially, I live each day studying for this moment, for each exam. I remember my parents telling me when I was in my 20's, with admiration, that I was the consummate student - that it was my lifelong passion. We just never knew that I would be attending my own university, earning my own solitary degree. A degree in my body, my health, my survival. I love learning about the facets of tumors, of tumor life, how to outsmart them, to jump the hurdles. Sometimes it's scary. Sometimes it makes me viscerally ill. Regardless, I continue. My only wish is that I would have more energy, that my brain wouldn't shut down. Since the first brain surgery my body has a governor, and there is nothing I can do to change it. I work within specific boundaries that my body dictates. You guys know I fight it, pushing too hard at times. I keep hoping that just like with a muscle, all my mind needs is exercise to gain endurance. Doesn't seem to work that way though.

Sorry for the delay in my email responses, I'll probably be backed up for the next week - I'm still having to take daily naps to catch up after all that research. Please send a second email if you have an urgent question and I'll do my best to get back to you. For now, Dan's sneaking me off to hit golf balls (a close second to my favorite - the batting range) to de-stress.

As ever, but profoundly obvious, my fate is in the hands of the universe. Let's hope I've done enough to keep that parasite at bay.

Thursday, May 29, 2014

The Most Poignant Riddle

Good morning. Been resting up from my worcation. I went to my parent's house to sleep, and meditate, and watch trashy Bravo TV (we don't have television anymore), but I got trapped in the vortex of the tumor world. Researching to make sure that you're living right, is much more satisfying than any other pastime. The tricky part is that my brain gets fatigued pretty quickly, and by Saturday it was fried. That morning Dan and I drove to the senior center where Grams lives. We brought her some goodies, and pushed her around outside. As we were driving home I had a mental lapse, I literally couldn't remember where I lived. Weird. It took several minutes for me to remember the image of our home. My mental Rolodex flipped from house to house, city to city, and finally I figured it out, but it was scary. Several moments of dementia. I don't know if it was a seizure thing - it didn't feel the same - or just lightheadedness from the CR, or worse yet, tumor growth? It scared Dan. It scared me.

I'm chalking it up to mental exhaustion. No need to panic. The MRI is near, and results will be available next week. We will know what's going on in my brain (to a certain extent) soon enough. I kind of don't want to know what's going on in there. I'd rather just keep going along with my current path. If the tumor is growing again, I don't know what my next step will be. There are a few promising clinical trials out there, and some positive off-label drugs I could add. I know that if the tumor is growing the next recommendation is radiation. I also know that as an IDH1 mutant glioma fighter, radiation is said to be more effective. That's new information that has recently been coming out in the research, anyway. It's a double edged sword because it's always great to have more treatment options, but at the same time I really, really, really don't want to do radiation. So, we'll see how it goes.

In the meantime, after last week's research, I've decided to go raw vegan for a bit. It's mostly veggies and some fruit. I realize that there are all kinds of diets out there for cancer, and brain tumors; the RKD, vegan, vegetarian, Paleo, caloric restricted, macrobiotic, you can do the Gerson therapy, or do the alkaline diet, and you can find someone who has survived from each one, even survivors who have never changed their diet and still live on SAD. It's kind of a crapshoot. There is no surefire diet to stop brain cancer, or any other cancer for that matter. These molecular aberrations will not respond to the same diet, nor the same treatments. Cancer may be the most poignant riddle of all time. But with that being said, there are direct correlations between elements of diet and tumor growth. It has been proven. For example, IGF-1 in animal protein, artificial sweeteners, sugar (of all kinds), artificial dyes, nitrites & nitrates, MSG, just to name a few. So what do you do? Do what feels right. We are all walking this walk together, but at the same time we have to use our own legs. I love learning from you guys, and I appreciate you sharing your knowledge and wisdom. I wouldn't be as far as I am without your help. When I share things, I don't expect you to jump on my bandwagon, I just want to give you the chance to check stuff out and see if it helps your situation. The IGF-1 issue in animal protein was definitely a game changer in our household. Thank you for all of the comments over the past several posts, the dialog was exciting, and very instrumental for Dan and I to adjust our lifestyle.

In one of the comments there was a mention of a couple of documentaries, the most profound being (in my opinion), Eat, Fast, Live Longer. If you enjoy nutritional documentaries, or just want to get your mind blown, please check it out below. (If you have any problems viewing it CLICK HERE.)

Eat, Fast & Live Longer HD by limoslight

Thanks again for all of the continued help as I navigate this curious journey, I can't measurably express my gratitude. There is such power in numbers.

Friday, May 23, 2014

Blinded By The Fashionable Ketones

I've been swimming in the interweb waves all day. I'm gathering, learning, relearning, trying to absorb, planning.

Things I know:
  • You can not completely eliminate glutamate/glutamine from your's in every once living thing (except lard & most oils)
  • Your body can create glutamine/glutamate when it wants it (thanks muscles and other less obvious trickery)
  • You can eliminate glucose from your diet, but your body will just create it anyway (muscles save the day yet again)
  • Limiting glucose and glutamine/glutamate is ideal for slowing tumor growth, but when hungry, a vegetable which may increase circulating glucose is better than eating a bit of meat (only because I'm IDH1 positive - the glutamine eater)
See, I knew, I had heard, I had read, I had discussed the fact that protein is a growth factor for all cancer. But I got bogged down with the whole ketogenic trend specific to brain tumors. I thought, perhaps we were bred differently. That we were special. That ketones were the key. I'm not saying the ketogenic diet doesn't help slow brain tumors, but from the research I've read it has to be calorically restricted. In its natural state the diet does not slow tumor growth ( But in my mind, I figured, if I could do the restricted ketogenic diet (allegedly the ketones themselves fight tumor cells if you get a high enough blood serum level) at least most of the time, it would be better to reduce the glucose, and protein (not realizing it was specifically glutamine/glutamate I needed to focus on) with the RKD than be a vegetarian or even do Paleo. The problem continuously surfaced, though, that I would putter out of energy. And when that happened, instead of reaching for a vegetable (carbs kick you out of ketosis) I would reach for protein like peanut butter or a hard boiled egg. Exactly the wrong snacks for low grade IDH mutant brain tumors. I was essentially handing Herman a big ole glob of glutamine.

It's crazy, I remember a phone call with my nutritionist where she emphasized that my green smoothies (which are all vegetable save an avocado & lemon) turn directly into sugar in my body; that without protein with each meal and snack, I was killing myself. Not her words, but still. She was emphatic about the huge sugar spike that would surge through my veins, therefore feeding the tumor. IE: Killing myself. Same same. It put the fear of Hermie in me, driving home the whole protein must be included to survive mantra. Remember all the times I've written about feeling guilty about my apples? That was because of my nutritionist. As was my deviation from my green smoothies. It leaves you feeling crazy. Who's right? What do I do? Am I just supposed to pick the lesser of two evils? Glucose spike over protein consumption? Girl still gotta eat.

Things I know:
  • Known unbiased tumor fighter = caloric restriction (click for a great study on the benefits). It doesn't seem to matter if you eat the calories from protein, fat, or carb, just be sure to take your BMR and cut it by 30% (some say 20% others 40%). That's the surefire way to hypnotize the giant. It won't stop him, but it'll sedate him, and maybe during that time we'll find just the right cocktail to kill him. It's also the thing I always forget. Or maybe I just don't want to deprive myself so I black it out from time to time. :)
  • Healthy fats like omega-3's (fish oil) continue to be a great way to supplement my diet. One of the least burdensome of the food groups, in regard to the glucose/glutamine issue. However, not that palatable as a snack. Just sayin'.
Reviewing over my notes, it's clear about the caloric restriction, but I'm also wondering if perhaps soduim phenylbutyrate & metformin could really work together, like hit it out of the park, for IDH mutant tumors (along with all my other goodies, of course - my newest motto is never take away, only add). I know I repeat myself a lot, but it takes a lot of hammering things into my brain, and even then details and concepts, the most obvious of stuff, often slips away. I wish I could just blame it on the tumor, but I think the more you use your brain the more you have to make space. Happens to all of us.

Am I more scared about this MRI than usual? Maybe. It's the turning point that we hit and had tumor growth after the first brain surgery, so technically, this is when Herman should show back up. Not to mention the fact that the proliferation rate of this tumor was faster than the first. If they see tumor I won't be surprised, only disappointed. If they don't see tumor I will consider it a miracle. It's not that I'm pessimistic necessarily, I just don't take this no-visible-tumor stuff for granted. I don't assume that all of these treatments "have" to work. There have been so many that have gone before me that have given everything they had, and still, it wasn't enough, they were taken. I know that life is a gift, and although I'm scared, more than scared actually, with every exhale of breath I remind myself that I just enjoyed a luxury.

Time for lunch...

Thursday, May 22, 2014

Flubbed The Obvious

I had an obnoxiously long blog post full of crazy information and charts, and things about glutamine - I had been working on it all day - then my mind was blown with a shattering epiphany, things started piecing together. If low grade tumors feed mostly off of glutamine/glutamate, then what's the story with glucose? So I talked it out with Dan and as we both started searching online (boy do we have some sexy phone dates) we finally started asking the right questions. What is in my special F-DOPA PET scan that I fly down to UCLA for? I felt like a moron, how had I never wondered that? If they weren't measuring glucose, which they clearly stated, what were they measuring? We typed it in and bam, if I'm understanding this correctly, the F-DOPA PET is essentially measuring an amino acid on the glutamine-glutamate pathway (click for a study).

How did I not ask that? How did I not figure it out? I remember being completely distracted by the fact that they were using radioactive particles. I guess that's where my mind went. It never occurred to me to wonder what was being mixed with those particles. I remember talking to my doctors after the surgery, in the neruosurgery ICU, about the idea of me going on the restricted keto to slow tumor growth. They thought it was great. How did it not come up that glutamine is the food source for my type of tumor, not glucose? Had they not pieced that together either? It seems as if they would have, yet, clearly they didn't or I think they would have said something. It's the whole point of this latest fancy scan, this exclusive machine that's only available at a few centers across the country, to measure the glutamine-ish stuff going on in my low grade tumor. How are the fragments of knowledge scattered so far apart throughout the tumor world that it's this hard for tumor patients to piece it together? What's going on? Oh, I feel sick. We really do have to figure stuff out on our own. Thank God I give a fart. At least now I can adjust. If I would have stayed on the Paleo diet it would have sped up tumor growth. The way that I have been eating has been full speed down the pro-amino acid freeway. No stoplights. And according to what I'm reading, the more glutamine in your system, the faster your tumor shifts into using glucose as fuel. It's a catalyst. Hello faster growing tumor. Hello death. I am literally glaring at an imagined Grim Reaper right now. I just told him I'm not ready, and if he comes near me he's going to regret it. Scythe or no scythe, this girl is scrappy.

Here's a scary, but necessary read about glutamine (for the record, I have shifted from Coldplay to straight up Enya's greatist hits - in dire need of some uplifting):


Glutamine promotes hallmarks of malignancy (click for full article)

Deregulated energetics. One hallmark of cancer cells is aberrant bioenergetics (26). Glutamine’s involvement in the pathways outlined above contributes to a phenotype conducive to energy formation, survival, and growth. In addition to its role in mitochondrial metabolism, glutamine also suppresses expression of thioredoxin-interacting protein, a negative regulator of glucose uptake (27). Thus, glutamine contributes to both of the energy-forming pathways in cancer cells: oxidative phosphorylation and glycolysis. Glutamine also modulates hallmarks not traditionally thought to be metabolic, as outlined below. These interactions highlight the complex interplay between glutamine metabolism and many aspects of cell biology.

Sustaining proliferative signaling. Pathological cancer cell growth relies on maintenance of proliferative signaling pathways with increased autonomy relative to non-malignant cells. Several lines of evidence argue that glutamine reinforces activity of these pathways. In some cancer cells, excess glutamine is exported in exchange for leucine and other essential amino acids. This exchange facilitates activation of the serine/threonine kinase mTOR, a major positive regulator of cell growth (28). In addition, glutamine-derived nitrogen is a component of amino sugars, known as hexosamines, that are used to glycosylate growth factor receptors and promote their localization to the cell surface. Disruption of hexosamine synthesis reduces the ability to initiate signaling pathways downstream of growth factors (29).

Enabling replicative immortality. Some aspects of glutamine metabolism oppose senescence and promote replicative immortality in cultured cells. In IMR90 lung fibroblasts, silencing either of two NADPH-generating isoforms of malic enzyme (ME1, ME2) rapidly induced senescence, while malic enzyme overexpression suppressed senescence (30). Both malic enzyme isoforms are repressed at the transcriptional level by p53 and contribute to enhanced levels of glutamine consumption and NADPH production in p53-deficient cells. The ability of p53-replete cells to resist senescence required the expression of ME1 and ME2, and silencing either enzyme reduced the growth of TP53+/+ and, to a lesser degree, TP53–/– tumors (30). These observations position malic enzymes as potential therapeutic targets.

Resisting cell death. Although many cancer cells require glutamine for survival, cells with enhanced expression of Myc oncoproteins are particularly sensitive to glutamine deprivation (8, 12, 16). In these cells, glutamine deprivation induces depletion of TCA cycle intermediates, depression of ATP levels, delayed growth, diminished glutathione pools, and apoptosis. Myc drives glutamine uptake and catabolism by activating the expression of genes involved in glutamine metabolism, including GLS and SLC1A5, which encodes the Na+-dependent amino acid transporter ASCT2 (12, 16). Silencing GLS mimicked some of the effects of glutamine deprivation, including growth suppression in Myc-expressing cells and tumors (10, 12). MYCN amplification occurs in 20%–25% of neuroblastomas and is correlated with poor outcome (31). In cells with high N-Myc levels, glutamine deprivation triggered an ATF4-dependent induction of apoptosis that could be prevented by restoring downstream metabolites oxaloacetate and α-ketoglutarate (15). In this model, pharmacological activation of ATF4, inhibition of glutamine metabolic enzymes, or combinations of these treatments mimicked the effects of glutamine deprivation in cells and suppressed growth of MYCN-amplified subcutaneous and transgenic tumors in mice.

The PKC isoform PKC-ζ also regulates glutamine metabolism. Loss of PKC-ζ enhances glutamine utilization and enables cells to survive glucose deprivation (32). This effect requires flux of carbon and nitrogen from glutamine into serine. PKC-ζ reduces the expression of phosphoglycerate dehydrogenase, an enzyme required for glutamine-dependent serine biosynthesis, and also phosphorylates and inactivates this enzyme. Thus, PKC-ζ loss, which promotes intestinal
tumorigenesis in mice, enables cells to alter glutamine metabolism in response to nutrient stress.

Invasion and metastasis. Loss of the epithelial cell-cell adhesion molecule E-cadherin is a component of the epithelial-mesenchymal transition, and is sufficient to induce migration, invasion, and tumor progression (33, 34). Addiction to glutamine may oppose this process because glutamine favors stabilization of tight junctions in some cells (35). Furthermore, the selection of breast cancer cells with the ability to grow without glutamine yielded highly adaptable subpopulations with enhanced mesenchymal marker expression and improved capacity for anchorage-independent growth, therapeutic resistance, and metastasis in vivo (36). It is unknown whether this result reflects a primary role for glutamine in suppressing these markers of aggressiveness in breast cancer, or whether prolonged glutamine deprivation selects for cells with enhanced fitness across a number of phenotypes.

I am mortified and kicking myself that this fell through my fingers. There is en masse of information out there about what to do, what to eat, how to survive cancer, and the hard part is that much of it contradicts. You never know which boat to jump on, but one thing is for certain you'll never survive long if you are stuck treading water. But how did I not follow the tracks? The obviousness of the F-DOPA; the uptake of an unknown substance that was allowing my tumor to glow on this special scan. How did I not think to ask what caused the illumination? I feel like a fool. It saddens me that I've spent a year and a half headed in the wrong direction, eating almost exactly what I shouldn't have. The nauseating irony. All this falls right before my MRI. I have spent the last four months eating glutamine rich foods, just nurturing old Hermie, pampering him. I've already called my doctor to get the ball rolling on adding sodium phenylbytrate (a plasma glutamine lowering drug) at my June 25th appointment - gotta sign some legal documents since it's off label. The crazy thing is that my team of nutritionists who specialize specifically in brain cancer patients were emphatic about me having protein with every meal, and snack, to keep blood glucose stable. The peanut butter was pushed to join in with the apple. But now I know, from checking the levels, peanut butter has a crazy high volume of glutamine. It looks like I would have been better off with just my original apple. How crazy is that!? It's so confusing.

I gotta go decompress. Time restart Enya's greatest hits or something. And maybe munch on one of those juicily tart apples.

Cool thing of the day: Earlier I got an email from Julene, a very sweet blog reader. We had never met, but she offered to drop off a care package to help me survive until Dan arrives (saving me from resorting to my mom's granola bars - definitely not on the new diet).

It was just what I needed. I met a new friend, I stole a few much needed hugs from her, and little did I know that vegetables were going to be paramount in my new diet. And apples have one of the lowest concentrations of glutamine in foods. Why wasn't I listening to my gut!?!? You guys know I love apples. Ugh. FOOL.

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.

Wednesday, May 21, 2014

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.

Tuesday, May 20, 2014

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.

Monday, May 19, 2014

Unless You're Bald

Had my first social event since that crazy barrage of hallucinations which turned out to be seizures. I was nervous because I knew it would be a lot of stimulation, lots of emotion (one of my best buddies was getting married), lots of music, and talking, and being "on". But I was giddy, and excited to get to be there. It is such a joy, and a treat, to be present when people you love commit themselves. When they open their hearts, sharing their dreams, and most intimate feelings. This wedding in particular was incredibly organic, and honest. Listening to their vows, shared by Lauren's childhood rabbi, gave us an unfiltered view of their all encompassing partnership. It left everyone feeling confident, and grateful for the love that they have for each other. Unfortunately, some weddings are just weddings. A party, food, a ceremony, dancing, but when you get the chance to witness deep happiness, the kind where you watch the bride and groom share knowing glances from across the room throughout the night, sneaking smiles when they think no one is watching, noticing that there is a connection so deep that even within a crowed room, that those two might as well be alone. It's exactly what you want for people.

I've been on such a regimented protocol that I normally either have supplements, liquids, pills, nasal drops, sublingual applications, powders, etc. all throughout the day. My tools include a digital pocket scale, a syringe, a couple of droppers, a teaspoon, and a measuring cup. Some of it has to be refrigerated, others have to be kept in the freezer. It works out to be something every 40 minutes. Some have to be alone on an empty stomach, others need to be with fat to absorb. Some have to be 30 minutes before another because it potentates the effect. It is detailed, and tricky, and it keeps me tethered to our house which may make me crazy at some point, but right now I'm just grateful to have mitigated the seizures. And, hopefully above that, keep tumor growth at bay.

The relief of having a clear mind is exhilarating; it makes me feel alive, and confident, and clear. Although we had to leave the wedding reception early (pushing back much of my schedule as we left over an hour later than we should have), I figured that a special occasion warranted the risk of deviating. And it was certainly worth it! I'm still trying to rest, and take it easy, and get back to a normal state. I don't think I will ever absorb the necessity of rest, and truly understand my body's limitations.

I have acquiesced, in life lately, submissively opening my soul to the reality that I need to heal my brain, my body, and my being. And that means focusing on my protocol. So my life is that schedule of things every day, all day. It doesn't feel that weird until I find myself in a crowded room of friends, and family of friends, and friends of friends and I see that they are living, and moving forward, and planning trips, and caring for their kids, and having babies, and planning for the future. And although I appreciate the compliment of how people say to me, "Wow, you look great, it's as if you there's nothing wrong!" They see my shell, but they don't know my struggles, my real life. I wrote this to my Susea in an email recently, "You know what the isolating thing is about cancer? Unless you're bald, no one sees." Of course, for those who read the blog, you guys are familiar, but most of the people we know don't read the blog. They don't know how hard we work. Or how deep in the trenches we live. And that's okay. I don't know about the intimate details of their lives either. It just feels weird to have such an overwhelmingly intense lifestyle that essentially goes unknown. Worse than that, we get comments like, "Isn't nice to not have to worry anymore." Dan and I smirk at that kinda stuff. People don't know, and they mean to be nice, but those words create a deep crevasse, almost the shifting of a tectonic plate, moving us further and further from people around us. It's a survival mechanism. In life, people yearn for connection, for shared understanding, to be accepted, and supported. And when people can't understand your world, your trials, your reality, it makes you feel even more alone.

It's another realization for me to remind myself that I should never assume things about others. We all have things going on. It's important for me to continue that mental dialog because often, I feel very isolated. I see myself, like at that wedding, as an outsider, a person whose brain is engulfed in tumor thoughts: Oh man I'm two hours late for my dinner Poly-MVA; Shoot, I need to take that baggy of pills in my purse because they will probably be serving food in 30 minutes; Oh no, I'm sitting below a big speaker, this is too loud for me, my brain is getting overwhelmed, is this going to cause a seizure?; Okay, we really gotta go, I don't want to leave yet, but I'm an hour late for my chlorotoxin. There is a constant inner dialog that is stressful. It keeps me in my own bubble. If I didn't have the bubble, though, I wouldn't be as successful in my schedule. At home it's all written down so that I don't deviate. I set timers, and have notes taped in specific places. It keeps me in line.

I'm relieved to not be bald again. I am relieved that I can hide my trials. I am relieved that I can walk amongst the populous, hidden, chameleoning into the backdrop. But what I've realized is that whether I'm bald or hairy, it does not change the fight. It does not lesson the amount of effort. It does not make it easier. The odd thing is, I thought it would.

Thursday, May 15, 2014

Settling The Seizures

Fear is a great motivator for me. For over a week I have taken all of my supplements, all of my pills, liquids, concoctions, and been very healthy with my food choices. By only allowing produce carbs I have regulated my blood glucose, which in turn regulates my seizures. For the most part anyway. I still have to keep my stress levels low, but by maintaining lower blood glucose I keep a better baseline.

I'm still processing the information from I had no idea that my brain was that active with seizures. I just thought I had a very flexible, unconventional brain. Maybe a graphic imagination. It seemed plausible since I have detailed dreams every night. I always remember them, who's in them, the dialog, what's worn, what we're doing, it's like watching a movie every night. It would make sense that my awake life would be vivd, perhaps with blurred lines of alterned consciousness. I had always attributed it to some sort of tumor effect. But man, it would be a relief to take that off the table and just blame it on electrical currents in my brain.

Seizures are fascinating. And doctors know so little about the causes. There are triggers, of course, like caffeine, lack of sleep, stress, over stimulation, brain tumors, brain injury, etc. but most of the things that the neurologists, and seizure specialists have told me were correlation not causation. All of the doctors are honest about that. Honest about how complex and unclear the issue of seizures are. Not all brain tumor fighters get seizures. 

Ok. It's pushing 80 degrees and our little cottage of windows is climbing toward 90 so I'd better walk Emma down to the lake for a swim. I need to pick up a book at the library anyway. I've been teaching Emma how to sit and pose on different spots lately. If you've met her you know that this is quite the task. The girl can not stop moving. Ever. Here's a few photos from a walk last week...

Monday, May 12, 2014

Tumor Growth? Nah Probably Seizures.

I had a major breakthrough on Friday. For some reason a little voice drew me to the computer to Google simple partial seizures. What I read blew me away. I've copied and pasted the page below; the highlighted yellow areas directly describe my seizures. The red notes are my explanations. From what I read, I am now less convinced of tumor growth, and more convinced that I am very subjectable to seizures. Much more so than I realized. Also, by sharing this information with Danny and my parents, I have finally been able to explain what has been happening in my brain for years. I hope this provides a window into my reality. PS Ben, thank you for the idea on getting a seizure dog. We have tried to train our dog (to no avail - she doesn't have the attention span) and we can't get another pet. But I'll bet the next dog we get will be a seizure dog! What an amazing capability those dogs have. It's wonderful.

Partial Simple Seizures (

Motor seizures:

  • These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body. - My right hand and arm stiffen, losing function.
  • The movements may spread, either staying on one side of the body or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or automatic hand movements. - I lose the ability to open my pill bottle, or explain what I need. I can usually say the basics, but the more I have to explain what I need the more likely the seizure will progress to a more severe episode. The more I have to think the worse I get. The worse the seizure progresses, it moves from my hand, to my arm, to my shoulder, to my face.

Sensory seizures:

  • These cause changes in any one of the senses. - Everything becomes too loud, too bright, too hot. I also get voraciously thirsty.
  • People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness. - I hear voices. And pins and needles show up starting in my right hand, traveling up my arm, and if it progresses it moves up to the right side of my face. It hurts.
  • Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space. - I just wrote about that sensation in the last post - the floating, or falling throughout space. Crazy! I didn't know that was the seizures! Apparently I get them more often than I realize.
  • They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear. - During heavy seizure activity I hallucinate conversations and experiences with people (both past memories, and novel interactions), my surroundings feel like they're moving - I hallucinate about what's currently happening around me, yet I'm conscious and responsive. I had no idea that this aspect was an active seizure. I thought I just had a very vivid, active imagination. It's truly an amazing, ethereal experience. Oddly, at the time, it feels like I'm living in my own version of string theory. It's fascinating.

Autonomic seizures:

  • These cause changes in the part of the nervous system that automatically controls bodily functions. - During seizure activity I have to urinate, and if I can't make it to the bathroom it makes me nauseous to the point where I feel like I might defecate. Dan has even had to pull over to the side of a rural road once and help me pee behind the bushes. It's a dire situation in the moment. For those familiar with me you know that I am very private about bathroom stuff so that was mortifying. To be that vulnerable, essentially helpless, is degrading. As of yet I have had zero accidents in my pants, and I focus that on that 100% success rate. Pretty proud of that.
  • These common seizures may include strange or unpleasant sensations in the stomach, chest, or head; changes in the heart rate or breathing; sweating; or goose bumps. - I always thought that the heart rate, sweating, and goosebumps were just an automatic fight or flight situation, I didn't know that that was actually part of the seizure. In the moment I need lots and lots of ice water to cool down, then I start sweating, and get chills, and goosebumps all over. Then all of the tensed muscles in my body release causing me to essentially collapse. It's very subtle, because usually I'm sitting or laying down  (in anticipation) but regardless, it's exhausting.

Psychic seizures:

  • These seizures change how people think, feel, or experience things. - When I'm in a seizure I feel like I'm in another world, a state where I'm on Earth, and in the room, but I'm also omnipresent.
  • They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language. - Often my seizures occur while I'm reading, or talking, and I can't understand why the words don't make sense. I have the sensation that the written symbols mean something, but I can't figure out how to comprehend what I'm looking at. Or I can see that someone is speaking to me, but it's as if they're speaking in a foreign language. Then I realize I'm about to have a seizure. I didn't realize that I was already in a seizure at that point, I thought that part was just an aura.
  • They may suddenly feel emotions like fear, depression, or happiness with no outside reason. - For me it's deep remorse, and embarrassment. About 50-75% of the time I cry. I apologize over and over to whomever is around.
  • Some may feel as though they are outside their body or may have feelings of déja vu ("I've been through this before") or jamais vu ("This is new to me"— even though the setting is really familiar). - We have all had the sensation of deja vu, but it's different. I can tell the different between a deja vu in normal life and a deja vu during seizure activity. It's as if they're both fruits, but one is an apple and one is an orange. It's unexplainable, but there are clear differences. 
Who is at risk for simple partial seizures?
Anybody can get them. They may be more likely in people who have had a head injury, brain infection, stroke, or brain tumor but most of the time the cause is unknown.

What is it like to have a simple partial seizure?
When people have simple partial seizures, they are fully awake, alert and able to interact throughout the seizure. Overall, these seizures are brief lasting less than 2 minutes
Medical disorders such as, stomach disorders or a pinched nerve can cause some similar symptoms. Hallucinations can accompany psychiatric illness or the use of certain drugs. And some symptoms (such as déja vu) are experienced by almost everyone at some time. Whether the symptoms represent simple partial seizures depends on how often they occur and whether they are associated with other episodic changes or other seizure types.

What happens after a simple partial seizure?
When a simple partial seizure ends, the person more often than not simply continues doing whatever they were doing before it started. If the simple partial seizure is an aura (a warning) a stronger seizure with loss of consciousness may follow. No first aid is needed for a simple partial seizure. - My simple partial seizures are the first step. If I can get to a cool, dark, quiet place and lay down with lots of ice water and my pills, I can stop the progression. If I don't stop it in time it will progress to a grand mal or other type of more severe seizure. 

How can I tell if someone is having a simple partial seizure?
Because the person is fully alert and able to interact, someone may not be able to tell when a person is having a simple partial seizure unless the person tells them. - Unless someone asks me a question and I look confused, or am unable to respond, people will not know I'm having a seizure. I always warn those around me when it's happening so that they know that I need help.

How are simple partial seizures treated?
There are several medicines, a device (Vagus nerve stimulator), surgery and diet that can help prevent further simple partial seizures from occurring. - Unfortunately (or fortunately) I do notice a decrease in seizure activity when I remove carbohydrates. If I focus on eating lots of healthy fats like avocados, nuts, meats, vegetables, and lots of water, my brain is much more clear and seizure activity remains low. It's not fail safe, but it definitely helps.

Monday, May 5, 2014

The Abyss

I broke through the cloud this morning, so I write. My brain, my brain escapes me. The elusive bandit comes and goes, leaving me at times incapable of understanding written words. It seems worse these days, and instead of wallowing in fear, I just avoid blogging, reading, emailing, researching. It's probably just seizure activity which, of course, has halted my driving, limiting my independence yet again. 

I haven't been trusting my brain to be around people much, just an hour or two at two different baby showers over the past two weeks. I refused to miss them, but was nervous throughout that I could lose control of my brain, therefore hijacking the party. That's the number one reason why I avoid events, I don't want to cause a scene, or distract from whatever is being celebrated. It's mortifying. Even typing right now is tricky. The spelling of words isn't naturally registering. Thankfully spell check occurs.

Technically, I'm still coming down from the seizure a few weeks ago, and I've had an aura since then. With all of the scrambled electrical currents in my brain, it's no surprise that I'm having problems, but there is always a hovering fear of tumor growth as a possible cause as well. Especially since my diet has been more off than on. The guilt and the fear compound which makes me wonder why the hell I eat sugar in the first place. Then I remind myself that sugar is addictive, and it stimulates pleasure centers in the brain so of course I would want it. Damn sugar devil. I wish it didn't exist. Life would certainly be easier. What a double whammy that the delicious sweet stuff feeds cancer. To trick your body into thinking sugar is a good thing (poor hijacked endorphins). Jerk.

My next MRI should be Saturday May 31st. Thus begins the final month of trying to play it cool, trying not to panic, reminding myself that if the tumor grows it is not the end of my life (not immediately anyway); it's just a time to try new additional tricks and treatments. 

Before I can spend much energy on the results of the next MRI, I'm stuck saddled with the confusion of why my brain doesn't always recognize my hands and arms, or words. I'm in a daily haze, trapped inside the depths of my own grey matter abyss. It is isolating. If not for Dan's patience, and our shared sense of dark humor, we would probably be losing it. Instead, we laugh, and laugh, even when I'm too tired, or dizzy, as he scoops me up and carries me to bed.

Between the bouts of mental less-capacity (I'm making that phrase up, but it suits), Dan and I have gently, slowly, made it to the gym the past two days. What I noticed the first day, after lifting weights, was that I could feel the blood pumping in my right hand. You remember that guy, right? The numb hand I roll around with? Anyway, it was very comforting to have a physical breakthrough during a time when my comprehension of things, and mental acuity are faded. These waves of complete capability to barely being able to function could just be my new normal. And I try to remind myself of that. That this could be my life, a continuous roller coaster ride of comprehension or lack thereof, but it will never cease to surprise me when I'm unable to take care of things. It will always make me fearful when even my inner dialog remains scrambled, beyond my best efforts. To not understand the voice inside my mind, to lose that most basic navigation, is humbling, and makes me feel elementary, simple, obtuse. Sometimes I literally feel like Alice falling through the rabbit hole, just falling and falling, flailing my arms through the air in the darkness. 

So forgive me for those who email and call or text, I am just treading water these days and can't even remember to breathe regularly. As my grandmother loves to say, "This too shall pass." And I'm sure it will. At least a reprieve of sorts will occur. It's the nature of the game, the ebbs and flows. For now I need to rest. 

The view from our chaise (which is technically part of our couch, but we divided it and now I have the perfect little cozy nook). Our happy little triangle park, so gorgeous, full of blossoms. I never tire from looking. 

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