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July 2011

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Evolution Of My Brain Tumor Diet

I have to clear things up…it’s going to be a little bit of a tangent, but hang with me. From the beginning of this diagnosis I have been searching, step by step, to overcome each obstacle. Once I realized, through research, that diet was linked to cancer (duh, how did I not see that), I started changing my eating habits. I reviewed the nutritional information on all of the packages in my life and started kicking out high fructose corn syrup. I stopped drinking diet pop, all energy drinks, and things with obvious chemicals. Then, I found the articles about the Restricted Keto Cal diet slowing the growth of brain tumors and I learned about the restriction of carbohydrates (all types simple and complex). But the truth is that I can’t sustain an extremely low carb diet. When I tried, I found myself clipping right along carbohydrate free, then I would attend a big party with friends and I’d be the girl taking a bite of all of the cupcakes. Every single one. You laugh, but that honestly happened. In my defense, everyone had eaten at least one (I think). So, between my April MRI and my seizure (which occurred just before my scheduled June 19 MRI) I had quit on my diet. I gave the diet about 50% of my effort. I’ve never been one to eat fast food, I don’t like chips very much, I love vegetables and healthy food, but I also adore artisan bread and glorious handcrafted cheeses. I cherish homemade sweets, honestly, I love them all, lemony, chewy, chocolaty, nutty, I’ll take one of each if someone’s offering. I took the time between MRIs to celebrate a freedom from my knowledge of food. I ran as much as I wanted, I ate as much as…

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Blog Comments

I would like to mention that I absolutely love all of the comments I receive. Sometimes, people have questions, and I forget to answer them in the blog posts. I do not have a way to contact people that leave comments, there’s no link to an email address. So sometimes, things fall between the cracks. I received a comment yesterday or the day before (days have a horrible way of blending), and I want to address the comment right now….. To Jessica C, I am so incredibly sorry about your oligodendroglioma growing back. I don’t know if you’re headed for radiation now, or what you’re planning on doing as your next step but I would love to hear about it if you have the time and energy (jessoldwyn@hotmail.com). Brain tumors suck. The information that I received about the restricted ketocal/ketone diet was a basic ratio of 4:1:1 fat:protein:carbohydrate. There is a specific computer program that epilepsy nutritionist doctors use. I recommend finding an epilepsy doctor that specializes in the keto cal diet, you can then work the caloric restriction into the computer system. It can factor your height, weight, activity level, etc. According to my doctors it is an all or nothing, highly restrictive system. They have a specialist at the University of Washington (where I receive most of my care). I’m not sure where you live, or what hospitals you have available in your area, but I opted out of the highly restricted diet. I didn’t want to waste the time of the specialist. I was using the basic concept of the 4:1:1 and restriction of 35% cut of calories. The whole point is to reduce glucose and all fuel. It’s very hard to maintain and it was too hard for me to run which I use as a…

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New Treadmill

Happy Monday to you all! My two and a half year old niece called me her “bestie” (best friend for those who aren’t down with the lingo) this weekend. Pretty fantastic! I should probably mention the minor detail that she was just repeating after me. But, in my defense, I didn’t ask her to repeat it, she repeated after me all on her own. Obviously, I’m her favorite friend. Although most of the weekend was perfect, there was a point on Saturday morning when I thought I was having an aura (the moment just before a seizure hits). With that realization, my pulse shot through the roof, I dizzily got up from the table, went for my purse and shoved my pill bottle at my brother, panicked because I couldn’t get it open, shaking my hands at my sides. I swallowed my Ativan (prescribed for just the occasion), and headed for a bedroom where it was quiet and I could lay down. I took deep breaths until the feeling passed. After the Ativan kicked in I felt normal again. It’s hard to know when a feeling is normal or when it’s a physical preposition to a seizure. I’ve decided that I can push myself when I have other people around, but when I’m alone I should rest and play it safe. If I feel dizzy or light headed while alone, I drink extra water and close my eyes for a few moments. As Danny says, it will take time for me to know my limits. Fun news…since I can no longer drive, we bought me a treadmill on super crazy cheap sale and my brother, father, Danny and I assembled it in my living room. I’m excited to keep up with my walking and running. In fact, I read an…

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Ondansetron

I have exciting news. The past few nights I had been waking up and vomiting due to my anti-seizure medicine. It took me a bit to figure out the cause, but once Danny reminded me of the side effects, it was a very easy problem to eradicate. The doctors had already prescribed Ondansetron, an anti-nausea medicine usually given to patients undergoing chemotherapy, radiation therapy and surgeries, but I hadn’t started taking it yet. In fact, I had completely forgotten about the Ondansetron prescription. I don’t love to take medicine, but I am telling you, Ondansetron completely saved my quality of life. I had been vomiting all of my food, and dry heaving each night. It would happen about 30 minutes after I would lay down in bed, and then I would have to run to the loo. It was interfering with my sleep, I wouldn’t finish vomiting until midnight. Anyway, last night I took a Ondansetron (they’re good for eight hours), at about 3:00pm. I was in bed by 9:00pm, never vomited and slept for thirteen hours. I feel fantastic! It’s amazing how much sleep can affect attitude. I’m concerned that of the 4 mg pills, 3 mg of that is phenylalanine, something that I have avoided to the point where I don’t even chew gum because it is a main ingredient in sugar free gum. I’m scared of phenylalanine and its’ effects on the human brain and body, but right now I physically need it to function. Maybe I can get a different prescription for a different high dosage anti-nausea drug that won’t contain the bad stuff. I guess I’ll have to research that. In the meantime, no more vomiting!!! Yay!!!!!! Also, my brother, my niece, and Danny will all be here for the weekend! I can’t ask for…

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No Fear

Ok. I’m off my pity pot. I feel loads better, I just needed to put this stuff in perspective! Every time I have a massive change, I need to digest it, and put it in its’ rightful place. So what if I can’t drive. I don’t need to drive everywhere anyway. The lack of driving gives me an excuse to stay home and take care of little things. I usually wear a life jacket in the river anyway. So what if I need a bath companion, at least it’ll be fun to visit with my mom or whomever. I’m alive, I’m not in the hospital, I’m not broken from a horrible car accident. I don’t need to live in fear, I’m just going to take things one step at a time both proverbially and literally. Just like after the brain surgeries, I’ll start with walking slow, then walk longer, and when I feel ready I’ll start slowly running again, and before I know it I’ll be finishing up my runs with sprints. I have no reason to fear exercise. There is no time to live in fear, although there’s always room to be cautious. I wrote a little note on the whiteboard magnetized to my fridge. It’s a place where Danny and I always used to leave little love notes. It says, “I will not live in fear.” So simple, but not so simple that it doesn’t need to be repeated. Sometimes I find that all I need is a little pep talk and some encouragement from friends, so thanks everyone. I’m still having flashbacks, but I take a deep breath, push the scary thoughts out of my mind, and change my focus. I will not give up.

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A New Version Of Normal

I feel like I’ve been pretty good about casting fear aside, maybe it’s because I love a good challenge. Sometimes, though, challenges can mount and it becomes difficult to keep your chin up. Although Danny and I went for a quarter mile walk the other day (I was craving cherries and there’s a fruit stand nearby), I have yet to get back to running. I’ve been very dizzy, and apprehensive about pushing myself too hard. I feel like the seizure has brought on a whole new set of challenges. I don’t know exactly what caused my seizure to occur. Most likely it was due to poor sleep habits and stress, maybe even low blood sugar levels, but there is no way to know for sure the exact cause. I don’t really know how to avoid it. I feel very vulnerable. I wish a doctor could tell me I was allergic to wheat or something and the reaction was seizures. I would avoid all wheat products and go on my merry way. I feel like I’m trapped in a dark place, my hands are feeling around the walls searching for windows or doors, desperately hoping for any sliver of light to expose the correct decisions, the correct choices that will help me succeed. I don’t know how to methodically get back on my feet. I don’t want to become stagnant, but I don’t know the difference between a simple challenge and what is pushing too much. Last night, although I’m not supposed to take baths for fear of a seizure and drowning, I asked my mother to hang out in her bedroom while I took a bubble bath in her tub. I thought it would be soothing and invigorating to overcome that fear. Instead, I was terrified and shaved my legs…

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Fear Of Reoccurance

I keep remembering how the doctors continuously told me that since I hadn’t had a seizure yet, I probably wasn’t going to have one. Unfortunately, no one can undo what has happened. As time goes on, and I continue to remember the horrible event that was my grand mal seizure, I seriously live in fear of a reoccurance. Danny, and my parents keep reassuring me that in time, this will all be a bad memory. That the longer I go without another seizure, the better I will feel. I imagine that my fears are similar to those who’ve been robbed at gun point, or maybe those who’ve experienced an earthquake. I feel unsure about what exactly happened, I remember the beginning, but I don’t remember coming out of it and I don’t know how I drove for 45 minutes afterward. I blacked out most of it. Danny has helped me piece things together, and little by little, some flashbacks have occurred. The flashbacks are haunting, and scary. For example, I remember when my eyes were rolling back and I was staring at the ceiling of my car, just as I lost all vision, I remember hearing a guttural sound, a deep haunting moaning cry. It was a sound that I’ve never heard before, and it was coming from deep inside me. I couldn’t stop it. It was as if the sound was vomiting out of me. I don’t remember anything after that. I feel like I should remember coming out of the seizure, or getting back on the road and driving. I don’t remember Danny calling me while I was in Leavenworth passing through. All I could say was, “The weirdest thing happened to me. I can’t explain it. I don’t even understand.” I guess I sounded far away and…

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Cutting Back

Thank you so much for all of the support. I appreciate all of the emails, the texts, the comments on the blog, and all of the love in the various forms.  There is no way I could be holding up as well as I am, if not for all of the love from all of you. So thank you. I’m completely exhausted, probably due to the seizure, the ER, the MRI, the oncologist’s office, and the reality of the changes in my health. Even though I’m aware of my brain tumor, over the past year, I had tried so hard to get back to a normal life. A life full of family, friends, work, volunteering, gardening, running, a life without limits. Now, I’m cutting back my work to 2 hours a day, in fact, I have to cut back on everything my life. I’m either going to collapse in a fit of seizures or I can sleep more, remove most of my social calendar, walk instead of run, and change my hobbies to reading and painting. Things that are not stressful. I’m scared to push myself too hard. I’m very light headed these days, and I’m terrified of having another seizure. It was horrible. I feel like I must have looked like I was possessed or something. I’m scared that I don’t know what exactly triggered it. I’m scared that I don’t exactly know how to prevent it. I’m scared to hurt myself or others. This last MRI was eye opening too. I honestly thought I would have another year or two before I had tumor regrowth. I’m young. I’m only 30 and I’ve always been incredibly healthy. For crying out loud, I earned the presidential fitness test in high school (sounds fancy but it wasn’t really a big deal)….

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MRI & Seizure Changes

Here we go, I borrowed danny’s fancy phone, and i’m punching keys like a two fingered sloth. The mri shows some new growth. They’re not going to radiate right away though. Due to the seizure, my license has been revoked. I can not drive for six months. I have to show zero seizures for six months. If i have one, the timeline starts over. I will be on antiseizure medicine for the rest of my life. No swimming either. I have to get used to having all kinds of limitations. I feel bad. This past weekend danny and i signed our marraige certificate just in time for my body to start falling apart. Now i wont even be able to go visit him. Things can sure change quickly. Maybe i need a Rascal, you know those little wheelchairs? I don’t know how else im going to survive.

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Seizure Story

Now that I’ve been sleeping all day, I can share more information about the seizure. I’m still very exhausted, but I’m going to do my best to explain what happened. Yesterday, I had an appointment in Seattle at a headache specialist. On the drive home, headed over HWY 2 just west of Leavenworth, I noticed my right arm becoming numb. While I was at the doctor’s appointment, I had picked up a magazine and flipped to an article stating What To Do When You Have A Seizure. How ironic. Anyway, as my right arm became more and more numb, I also became acutely confused about what was happening. There was a turn off area (thank God) and I slowly rolled to a stop to gain my senses. Just as I put my car in park, my right arm curled up against my chest, then my other arm did the same thing. I had absolutely zero control of my body (thankfully I was wearing a seat belt which served as a harness). My body started convulsing, my eyes rolled up into the back of the socket. All I could think was to keep my tongue from folding and causing me to choke. The number one thing on the article said, “keep calm.” So I did. I don’t remember anything after that. Eventually, I was so confused and out of it, that I got back on the road. I was in an area of road where there was no cell phone service, and there was zero traffic. I thought I would try and get back home. Once I got into Leavenworth, apparently, I called Danny and he said I didn’t make much sense. He told me to call my parents. I called them, and to pick me up but they didn’t answer….

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