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.

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.

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.

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 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...

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. 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.

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. 

Huge Tumor News

You guys there are some seriously exciting new vaccines and drugs targeting IDH mutations. I have to thank our buddy Stephen (Astrocytoma Options) for keeping his fingers on the pulse of cutting edge treatments. This means great things for us in the cancer/tumor world. Our job is to keep hanging on until effective treatments become available. I mean get real, radiation and chemo aren't cutting it. So that's it. We just have to hold out and stay healthy long enough for research, and technology, and the government to allow treatments that will heal us. And it looks like we've got a few on the horizon that may do the trick.

The link below is referencing blood cancers, but that's okay, if it does work on IDH2 mutations, that means (I believe) that it would be effective for all cancers with the mutation (more or less, anyway - I'm sure some of the mechanisms are different). Meaning you could use the drug for other cancers (ie: gliomas) as an off-label treatment.
Phase 1 Data Demonstrating Clinical Activity of AG-221, First-in-Class Inhibitor of IDH2 Mutations, in Patients with Advanced Blood Cancers

Now this link is the most exciting for me as an IDH1 mutant glioma fighter. Word on the street is that Duke is working on a similar vaccine. It is literally a race for a possible cure. I hear that they're headed into phase II clinical trail very soon. YES!!!! So exciting. Here is a direct quote from the release, "Vaccination of humanized A2.DR1 transgenic mice bearing syngeneic IDH1R132H-mutated tumors resulted in a mutation-specific antitumor immune response and control of established tumors, which were infiltrated by IDH1R132H-specific T cells." (click for full abstract). So it looks like the vaccination was specifically targeting the IDH1 mutation and caused an anti-tumor response which I'm not sure if it caused a shrinkage of the tumor itself, but at minimum it looks like it stopped tumor growth. How fantastic is that!?! It's what we consider a miracle in our household! Now, of course, they start with mouse models, and we need to make sure that this vaccine is effective in humans with established tumors (as opposed to grafted/implanted tumors). Oh man, but to be getting this close to real treatments, real options, is absolutely thrilling. When I got those emails from Stephen, my eyes started watering, and my soul became weightless. It's just fantastic.

If you guys haven't had the chance to check out Astrocytoma Options, please take the time to check it out. It is the best wealth of knowledge, and research, and info on astrocytomas/gliomas. Stephen is a selfless genius and we are all very, very lucky that he cares for his friend so much that it turned into a passion to help her live a long healthy life after being diagnosed with a brain tumor, and now it has morphed into a goal to help other people survive.

You guys, let's do this! Let's keep surviving for a cure! That's all we have to do is be like Bond and live to die another day.

The Magical Puzzle

Creating my own candle from all the old excess candle wax:

Planting seeds indoors (to transfer into the garden in a few weeks):

(They're watching the grownups.)

Tickling Lemolo into producing his little Eureka lemons:

(Can you see the baby lemons? - they look like limes.)

I love to repurpose, reuse, create, and nurture. I think my passion for plants has to do with the fact that so much in my life is out of my hands (the big picture anyway). So any time my fingers are literally knuckles deep in soil, I feel at home, safe. Gardening allows me to contribute, to accomplish, and encourage. It's just the little seeds, sleeping in their shells. Then, so easily, they sprout and grow unbridled shoots, with their budding leaves, and arms reaching every which way. And the flowers, with petals waving, fluttering open and closed throughout the day, winking their pistils for the insects. It's breath taking. Like the concept from the old children's book, "Indian in The Cupboard", it's magical.

It's ironic that I had zero desire to garden while growing up. My mom would prod, trying to get me to weed with her, but I would run off. Now, it's my favorite thing to do. If not weed, at least garden. I check on my seedlings, and starts, and bulbs, and established plants every day. Sometimes two or three times. I lean over, squating near the earth, drinking it in with my eyes. There's always another bud, or leaf, or sprout to notice. I'll never get sick of it.

Sometimes, most times, I inventory the little plants with my eyes while my mind wanders off to religion, of faith, of energy and love. I wonder what the true purpose of life is. What really happens when we die. I don't find it morbid, or even depressing or negative. I find it fascinating, and wildly fantastic. The best part is that we can all have different ideas, different beliefs, but not one of us will know for sure until we get to the other side. There's something curious about that, as if we are meant to continue the search, to never settle. That there is always more to learn, to read, to watch, to understand. What a fabulous puzzle we are born into. 

Emma Bombed

Just got off the phone with my parents. I love a good morning chat. This little devil...

...was screaming at me at the foot of the bed from 5:30-5:45 am, then climbed up onto my side and curled up. I tried falling back asleep; I tried reading. Then I gave up. I love having the sun rise at 6:00 am, the morning dusk (or whatever you call it) is so happy, and inviting from the windows, it draws me out. But at the same time, I can't sleep very well when the sun's up. I'm like a flower, the petals just start opening up, I can't help it. Anyway, lucky for me my dad wakes up in the four o'clock hour, so I always have a friend to visit with. And usually we talk long enough that my mom wakes up and joins us over speaker phone.

One of the things we discussed was how embarrassed I was that I complained about the scar and headaches. I realized that probably all of my tumor friends have the same issues. My case is not singular. Are my issues that big of a deal? Nah. It's important for me to remember that.

The Counterintuitiveness of Cancer

Morning. Been a busy few weeks. Mostly good, but a bit of bad. I had another seizure last week. Damn it. Stupid. It makes me sad to not be in control of my brain, and my body. It's very foreign. I don't think I'll ever get used to it. And each time it happens, I still never expect it to happen again. I'm always hopeful that my mind will recover from all of the damage, from all of those lifesavingly intrusive fingers that have probed deep in my brain.

I. Am. Sick. Of. Seizures. And scars. My scar hurts. Badly. I don't normally talk about it, but it's awful, and there is nothing that can be done. It just comes with the territory. The only solution doctors have given me is Botox shots into my skull area, and there is absolutely no way I'm doing that. There have been clusters of nerves forming around the screws where they re-attached the bone, and it hurts to the touch, sometimes throbbing incessantly. And sleeping has become tricky. I dream of an air bubble that can support my head without touching anything. Sounds fluffy, and cozy, and sleep supporting. Of all the problems to have, I realize this is minute, but regardless, it sucks. One good thing is that my girlfriends keep complementing me on my bouncy, full bodied hair. The funny thing is that it's the scar, and the cutting of the hair follicles that caused the regrowth to point almost directly up from the scar. It's like anti-gravity hair. Little victories.

Sometimes the pain is such that I literally feel nauseous. That what today's face is giving. Just off my fingertips is a mass of nerve endings. Basically a fat nub, with irregularities, and some divots. Lately, I find that most days I can't even eat until afternoon because I feel sick. I guess it can be a nice diet. (Stop panicking mom.) To distract myself this morning, I put make-up on. Not a daily occurrence (or weekly for that matter), but I've talked about it before, there's something about tricking yourself into feeling good by making yourself look better. Kind of like smiling yourself into happiness, which, for me, works every time. 

Enough complaining, I have fun news. I harvested my first kale for a batch of popsicles and smoothies! How cool is it that I can grow some of my own stuff!?! I just purchased a popsicle making set from PCC the other day (what took me so long!?!), and I've been munching on them ever since. I am addicted. Even when I'm freezing. I just toss another layer on, even gloves when necessary, then I pop one out and wander around the yard checking out all of my little seeds poking out of the soil. My nasturtiums, sweet peas, giant allium, lupine, cosmos, and my dahlia tubers are peaking out. I even had to throw a batch of broccoli sprouts out (they were stinky) a few weeks ago and every single one of them took to the soil so I have somewhere around a hundred broccoli plants. Woops. Gotta be careful where you drop seeds and sprouts in Seattle in spring, cause pretty much everything grows.

 

 

The whole seizure thing is frustrating because they happen when I over exert, step outside my normal routine and push my boundaries. It's confusing because I feel incredibly capable. I would love to have a career, and be more challenged, intellectually, but the reality is that my brain literally shuts down when I overwork it. And it doesn't even take much. But I'm so curious about life, and I love to theorize, and explore, and learn, but instead of having a career, I'm stuck taking it easy. I'm so sick of hearing the term "take it easy" or "rest" or "don't push yourself" - I'm pretty sure no one ever made major contributions to this world by silencing their brain which is exactly what everyone keeps wanting me to do. I feel like a lazy, unaccomplished hamster stuck on an isolated little wheel at times. It is counterintuitive to work on quieting the brain, to lessen mental challenges, or to essentially numb my mind.

Okay, maybe my nerve nubs are making me a little cranky. I still can't run until the chest heals from the little surgery, that's probably why I'm irritable. Jess needs a run. Rah. So grumpy. Clearly, I should head out for a walk around the lake with Emma to check out the baby ducklings. They've hatched! I forgot to mention that. Best time of year. Those little fuzzy nuggets melt my heart. I'm outa here.

Four More Years

Today is my four year anniversary from diagnosis. We have endured so much, our mental and physical strength have been tested. We've had three brain surgeries. We've moved three times. We've re-learned how to read, and walk, and run. We re-learned how to write and use utensils. We expanded our vocabulary. We've lost the ability to drive, then earned our way back behind the wheel. We've had adventures, completed races, tried every brain tumor diet on the planet, researched and gone to the edge of our limits. We've traveled across the country, even the world, to seek the best treatment. And through it all, I can't help but enjoy every moment (even the tough times). The longer I'm alive, the more grateful I am. It's exponential. I've heard new parents say that they couldn't even anticipate how much they love their new child, and that's how I feel about life. Every day my heart swells with gratitude. I love it here. I love my life. 

This weekend Danny surprised me with several fun things. My favorite was a cat video festival. I laughed so hard that I cried. For about an hour. Anything that can make you cry in joy is a great thing. 

Of course we got out to celebrate our muscles, and legs, and strength, and crazy ability to overcome the effects from the first brain surgery. I can't believe that they told me I probably wouldn't jog/run again. Fooled you guys. Ha!

Dan surprised me by setting up our patio stuff so that I could read my book in our triangle park. I can't believe that spot used to be dirt. You can see Emma's outline under the umbrella toward the back of the trough garden. She's a big fan (left side).

You guys, I'm so happy to be here. I'm so happy to wipe the crusties out of my eyes each morning. I'm so happy to do my chores, to try a new recipe, to have the fortune to run and jump into Dan's arms, and call my parents just to say "hi". Thank you for joining me on this journey. There are lots of statistics out there, but I remember reading one in my first year out. It said that a person my age, with my type of tumor, had a life expectancy of 4.5 years. Statistics used to really scare me. I didn't know what to expect, how quickly I could deteriorate. Now, I know that life isn't about statistics, or where you fall on a bell curve. Life is about how you feel, and how much joy you experience in each moment. It's about throwing numbers, and expectations, out the window, and just going for it. 

Sunshine and Raindrops

Man. I did it again. Fool. I took another narcotic. So I spent last night, and this morning, on the couch watching a PBS special on the crested black macaque, and subsequent programing (ending with Sit And Be Fit - that's where I drew the line). Boy are they cool, by the way. The macaque. I'd been doing fantastic, healing great, keeping busy (gotta love itemized taxes), and enjoying the sunshine and our exuberant garden, when, out of curiosity yesterday morning in the shower, I removed my bandages. Wrong move. Big mistake. I underestimated the roll of the tape. Definitely an important feature in regard to placement, and security, of my stitched fleshy parts - at this point movement and gravity are still smarting enemies. I wanted to see how things were looking, though, because the incisions were getting tickly, and ichy. The red breast tissue surrounding the bandages had given way to a nice sallow yellow, showing clear signs of healing, so I started peeling away at the tape. One thing led to another, and before I knew it I was standing in front of the mirror, dripping wet, checking out my franken-boobies. It all happened so quickly, almost trance-like.

The surgeon did a magnificent job; I was truly surprised. I mean, I shouldn't have been since he's a well known reconstructive surgeon, but still, when they're cutting in such sensitive areas you never know how it will turn out. Looking at my sliced breasts, my eyes welled up a little. Immediately, it was because he did such a precise and beautiful job, but the second wave was because of the relief. The relief that it was over. I have a habit of moving forward, stepping over or around any hurdle in my path. I get scared while I traverse the new territory that I must overcome, but it doesn't stop me, I keep going. But sometimes, after the fact - once I've had a moment to regroup - I catch moments of reflection where I realize just how hard the bumps have been. Once you're out of the heat, you can breathe, and let your guard down, and allow yourself to morn for your body. That only lasts for a few moments in my world, though. I find it tedious and dull to feel bad about things. I have all the human emotions, but I don't like to get caught in the toilet bowl of sadness for too long. Thankfully, my attention span for sad things is very short. Maybe it's a defense mechanism. Who knows. Who cares. All I know is that I'm a lucky (or annoying) person who is easily delighted by both sunshine, and raindrops, volunteer plants growing in cracks on sidewalks, sharing a bag of baby carrots with Emma (she gets all the fat ones, and I get the skinny ones - it's our deal), the delicious scent of pollen carried by the wind, the memory of my niece and nephew's laughter. I'm an easy keeper.

Before and Current. The garden is taking shape! Time to get out and continue the never ending job of weeding. (In the background you'll notice my rudimentary trailing system for my sweet pea fence. Can't wait for that to grow in!)

Total Knockout

It's pushing 1:00 am and I can't sleep. (Party animal!) Probably had too much fun in my troll-ish sleeping under the bridge episode with the general anesthesia. Man was I out. The whole day was a bit funny. I wasn't supposed to eat or drink anything, but sometime around 10 am-ish, I cracked and ate a deviled egg. If I go too long without eating or drinking, I can get really ill, causing a major drop in blood glucose which has a couple of times scared me into thinking I was having a seizure. Or maybe I did have a minor seizure. Not today, but in the past. But whatever. So I ate the egg. I really didn't think it would be that big of a deal. The way I thought it was all going to go down was that I would get a mild sedative, and be slightly awake for surgery, not a full blown knockout. Flash to pre-op, and all of a sudden it was a big deal, with all these threats of vomiting myself to death. Now, I'm not a newbie to GA, or the dangers of eating before surgeries, but I honestly didn't think this whole thing was going to be that big of a deal. Was I scared? Hell yes. Did I also know that the surgery had to happen and that it'd be advantageous to get over myself and just deal? Ya, you bet. Did I think 45 calories would bump me back on the ticket? No. Not really. Then, a nod through the curtain from my fantastic surgeon who reminded me (I had forgotten, or conveniently blacked out) of the fact that I was also getting a resection on the left boob as well. So I was the winner of a bilateral situation. Oops. Forgot about that minor detail. Double the fun.

So, after delaying the surgery for 2.5 extra hours because of deviled egg-gate (Spent playing charades with mom in pre-op. Side note: turns out we are decently acceptable players), I was wheeled into the OR at around 3:30 pm. Cut to some hot liquid entering my body via my IV, and a sleepy feeling, and then a mask over the face. The next thing I remember is being wheeled out through the doors from the operating room to post op. It was quarter after five, and someone said, "How are you doing?" And I said, "I just got so much done! I've been in meetings all day, answered about 200 emails." Then the first voice giggled and burst my bubble, telling me that it was all a dream and that I just finished surgery. A confused grin spread across my face; I wasn't convinced. Then, reality hit (probably as the drugs waned out of my system) and I was kinda bummed. Clearly, my subconcious thinks I'm some sort of kickass CEO or something. Not a bad alter ego to have, better than an endless dream about cleaning vomit after vomit after vomit or losing a knife fight, I guess.

I was released from the hospital sometime in the late six o'clock hour, just in time to finish up rush hour traffic. Perfect. We were home a little after 7:00 pm, and I proceeded to eat everything in the house. A true Oldwyn. Never lacking a desire to munch. Some people wish for more energy in life, I wish for a quell in appetite. At age 33, though, it may be time to just give up. Things probably won't be changing.

Side note: Shouldn't these Oxy pills be making tired? What the fizz. I will never completely understand narcotics.

Lots of favorite parts of my day, but only one with a photo. Surgery waiting rooms these days are like going to Chilli's. They have buzzers for when we're done, or if there's an update with our condition. Very fancy. Note: I haven't been to Chilli's since 2001, so don't be upset when they don't have the buzzer system. I was just illustrating a point. 

It is both very fun to be awake this late, but also exciting to think that I might be able to tickle Dan awake in the five o'clock hour for work. There's not much more in life I love than waking people up. It's perversely gratifying for me. It's like this, in my mind, "Ha! I caught them! And they're asleep!" Not to trumpet my skills, but I'm pretty good at catching people. Here's a trick, make lots of friends who are night owls. But that's all I'm going to give away.

Cramped Cottage

I'm still carrying the love that was shown to me over Friday Harbor fundraiser weekend, so thanks guys (especially Courtney, Melissa, Candyce, Rene, Leisa, Mike, and Kaal for putting on the barn dinner). I'm pretty calm this morning, even knowing I have a date in the OR at 1:00 pm today. I'm more upset that I can't have a cup of coffee or eat anything. The anesthesiologist mentioned small sips of water. Boring. I should have eaten a big dinner last night. Like a big fat bun-less buffalo burger with brie cheese. Rats. I wish I could eat the blackened chicken breast in the fridge, or the deviled eggs, or the sprout salad I grew and harvested (just gotta toss some of our tahini sauce on it). Yes! Or anything. Oh, the macadamia nuts, or the soy nuts, or the celery or cucumber to munch on. I'm desperate! But a hot cup of delicious coffee with a tablespoon of grass fed heavy cream....yummmmmmeeeee. The creaminess. I guess that would be my #1 choice.

I've been distracting myself, but now I'm just ready to get this overwith. It's supposed to rain from now through the weekend, ugh, I'm going to get cabin fever, I can already feel it. There's only so many episodes of Nova that I can watch. I'm all about nature, but I can't stomach the animals eating each other, blood all over their coats. Yuck. I've definitely gotten smarter without cable (literally), but it has also ruined my ability to zone out at mindless TV. I lose interest. 

Alright, I'm off to do some ironing. Here's a few fun pictures of things growing in the house and the garden. Hope you find them as cool as I do. I'm a simple girl, easily excitable.

Before

After

Day 1

Day 3

Day 4

Day 5 (still growin'!)

My sprout condo, so I will never go a day without broccoli sprouts. Which of course  I do because I'm terrible about timing. 

Hope you all have a great weekend. Fingers crossed that the doctors will say I'm cleared to walk on the treadmill, so I can bust out of our little cottage and make my way to the gym. I'm not into soggy walks. Soggy runs? Sure. Because when you run you keep warm. I've tried waking in the rain and it's miserable. Awful. I feel like a dog that's getting a bath. Not fun. I'm rambling. I'd better get my act together, my parents will be here before I know it and there are a lot of unhappy wrinkled shirts glaring at me from the couch. I'd better save them.