Monthly Archives

May 2014

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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…

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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…

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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 diet…it’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 (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1819381/figure/F2). 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…

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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…

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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….

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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…

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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,…

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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…

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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 epilepsy.com. 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…

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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 (www.epilepsy.com) 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….

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