Wednesday, July 27, 2011

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 I needed to run successfully, at one point accomplishing over a 10 mile run with an 8ish minute mile. It was beautiful and I felt safe in my choices. I ate ice cream and didn't feel bad. I drank delicious local red wine, I laughed with friends, and felt like a completely normal 30 year old woman.

That all changed when we received the MRI scans at the radiation oncologist's office. I sincerely believed I wouldn't have tumor growth for years. I had decided that I would probably have at least 3-4 years before we would see that lousy white mass growing. I don't know how I picked those numbers, I guess I was just feeling so great. I was drunk with power over my future.

When I saw the MRI scans it was literally a stinging slap to my face. I can still feel it, the pain is continuously palpable. I won't let it defeat me, but it sure as hell makes it easier to be healthy. From the moment of the MRI I went on a logic kick. My body tells me that it wants whole foods. It wants veggies, lots of them, all colors all sizes, the weirder the better. My body wants fun fruits like deep purple berries and apples, it wants watermelon and cantaloupe, tropical fruits too but that's not Wenatchee's thing. My crazy little body wants salmon and chicken and sometimes steak. I'm not eating bread, but my body has definitely mentioned an IPA. Weird. As a treat at a friend's house, instead of biting off all the cupcakes (one more point, they were all organic ingredient cupcakes made from scratch...ok, I'm rationalizing), my goal is to eat some cheese or have a glass or two of wine. I'm too scared to do the measly 50%, I have to do at least 90%. This transition is still hard, even though I've had the fear slapped into me. In fact, I can not have anything off my diet in the house. I can't say 'no' to myself. Zero self control. It helps that I can't drive and I've cut my social engagements by at least 75%. As an odd note, I've already lost 8lbs and I'm eating more than ever. I hadn't seen 146 in awhile.

Thanks to everyone around me. It's nice to have people that are passionate to help me succeed. My family and friends help provide fantastic foods when I get the chance to visit. If I can slow this tumor down by eating specific foods, I would love to sass my family and friends for decades to come! I'm sure I'll botch my diet a few times before the next MRI, but my goal is to surprise the doctors and have them looking in awe at a shrinking tumor. I've heard crazy stories about such things, but I also know that if there was a cure all that would shrink brain tumors, all of us patients would mortgage everything in reach to get it. As far as I've seen, there is no easy answer. It's food, it's exercise, it's genes and it's crazy stuff like cell phones (?), and not in that particular order. Who knows. For now, I'll listen to my body and see what happens. Cheers to sassing you all for decades to come!


Monday, July 25, 2011

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 stress reliever. So, I stopped trying to do the restricted keto.

My main diet at this moment is the removal of simple carbs, and simple sugars. I eat all vegetables (I don't eat root tubers), all fruits (but I keep the quantities of fruit to  2-3 servings a day tops), I eat mostly lean meats like salmon, tuna, shell fish, chicken and such. I do eat red meat, but it's just a day or maybe two a week. The majority of my diet is vegetables. My mom found a brassica tea that contains Sulforaphane Glucosinolate which is a very powerful antioxidant found in recent studies to slow the growth of and reverse the damage from glioma brain tumors. Anyway, it's really late and I'm going to be in trouble for not being in bed at this late hour. I have little spies that make sure I get enough sleep, and I think one of the ways is the time counter on the blog posts.

I'll ask for Danny's medical research stuff, the links and everything and add them to my blog so that all visitors to this blog can have the same information that we've been fortunate to find.

If there's anything I could recommend at the danger of sounding completely arrogant, always talk on speaker phone when using your cell, eat several servings of broccoli, all cabbages, cauliflower, brussels sprouts, and broccoli sprouts a day (pick one or two a day). Eat as many mushrooms as you can, especially shiitake, and maitake (maitake has been shown to pull the toxins from brain tumors and slow or stop brain tumor growth). Avoid all refined sugar and refined carbs. I'm sure you already know all of that stuff though, so please forgive me if I sound like a bossy idiot. I know first hand how hard it is to fill a day with the brassica family and billions of mushrooms, but hey, anything we do is better than nothing.

I do hope you email - I'm sometimes as bad as a week or two late on responses, but I respond none the less. Stress is a devil, so no worries about an email, I just hope I can help you in any further way possible.

I'll be thinking of you when I lay in bed trying to sleep (it's not creepy, it just helps me unwind....that was supposed to make you laugh) wishing all kinds of fun things for you in your life. Most of all, I can tell you right now, I hope you sleep soundly, and awake refreshed. Tumors are stupid. Let's beat this.

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 article from the National Brain Tumor Society that brain tumor diagnoses who work out regularly live much longer (just like you regular non-terminal illness people - I guess exercise is great to increase the lifespan of all. That should have been a no-brainer) than brain tumor patients who are sedentary. I live in an unsavory location for a lone female, and since Danny will be in training between Seattle and Portland until November, I now have the ability to walk/run in my living room. Cool! Now, even today after my nap, I was able to watch my favorite DVR'd show Extreme Makeover Weight Loss Edition with Chris Powell as I walked on the treadmill. It was fantastic! I even grabbed two cans of garbanzo beans for my hands and did arm exercises. This is going to be a great new thing!

Friday, July 22, 2011

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 anything more. Cheers to a wonderful weekend to all!

Wednesday, July 20, 2011

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.

Tuesday, July 19, 2011

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 in record time. I continuously flashback to the tingling, the numbness, the curling of my fingers, wrists, arms, and then the violent shaking and screaming, then the nothingness. I remember feeling helpless, just before losing consciousness. I still feel helpless.

I have yet to cry since the seizure, and it's because I won't allow myself for fear that I may not be able to pull it back together.

I feel like my life has a new version of normal. My playing field has changed. I have new rules to live by. I can't even wrap my head around it.

Monday, July 18, 2011

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 slow with my speech. Danny asked me where I had been, that I should have been home by then. He asked me to drive home and call when I got to my house. About thirty minutes later as I was coming into Wenatchee, I called Danny and told him that I thought maybe I had a seizure or something. I started to remember pulling off of the road, and some of the details. Then I told him that my right side was numb, and he told me to call my parents to come pick me up. I pulled over and called my parents and when they arrived I told them that I was so proud that I had called them first, not Danny because Danny wouldn't be able to come get me anyway. I didn't even remember that I had spoken to Danny twice already.

Anyway, when my dad arrived, he pulled me from my car and placed me to into the passenger seat, I was dragging my right foot and leg. I remember once I had my IV in at the ER, I had a splitting headache and I was wildly confused. Both my mom and dad joined me on either side of my gurney. All I wanted to hear was old stories of my brother, Kaal, and me as children. I wanted to hear about our vegetable garden, and our animals. Mostly I wanted to hear about how Kaal would read to me and tell me stories. How Kaal would take me frog hunting and fishing. I don't have memories of my childhood without my brother, they go hand in hand. I guess I needed to find my happy place.

I'm still trying to find that place. I'm still scared about what happened. More and more, my body is manifesting fear about the seizure. It's in flashbacks, irregular heartbeats, and an overall high blood pressure. I'm trying to stay calm and relax, but I'm overwhelmingly traumatized by having that grand mal seizure while alone. I don't trust my body to take care of itself. That my friends, is incredibly frustrating. I don't want to lose my freedom to live alone, but at the same point, I don't know if I trust myself to take care of myself. That is a horrible place to be.

Also, please note, I am obviously grateful to be alive today having the good fortune of having an "aura" that a seizure was coming on, causing me to pull over. Please always remember my story, every single time you drive. You absolutely never know what is happening in the cars around you. Please don't assume that all people are safe and that the cars around you are safe. My dad likes to say that the safest drivers are the ones that assume that every other driver is out to kill them. It terrifies me that I could have hurt or even killed someone. Please, please, please look out. You absolutely never know what's going on in the cars around you.

Sunday, July 17, 2011

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). The tumor in my brain is happily growing. What an idiot. The stupid thing doesn't realize that if I die, it dies with me. Unfortunately, you can't talk sense to a brain tumor.

Time for bed. The new seizure medicine which I take each morning and night makes me very sleepy. I'm pretty drained, definitely confused, and still reeling from the events of the past week. I don't like the reality of this brain tumor. I can deal with the theory of it, but the reality totally sucks.

Thursday, July 14, 2011

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.

Wednesday, July 13, 2011

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. So in the meantime I kept driving toward Wenatchee. It doesn't make any sense that I would get back behind the wheel. I'm very embarassed that I didn't have my wits about me to make safe decisions. As I said, I kept driving, and just as I was getting into Wenatchee, my parents called. I couldn't explain what had happened, but they said just park the car and they'd come get me. When they showed up, and helped me to the passenger seat, my right leg was dragging, and my right side was still going in and out of numbness.

Next we hit the ER, arriving at sometime around 6:00pm. They pumped me up with anti-seizure drugs, and anti-nausea medicine. Also, my head felt like it was exploding, so they game me some kind of pain killer, a type of relative of morphine. The nurses were EXCELLENT. If you ever go to the ER at Wenatchee Hospital, I don't think you'll be disappointed. We ended the night sometime before midnight.

Now, the next step is an MRI tomorrow at Harborview Medical Center in Seattle. The MRI starts at 2:15pm and then I have an appointment with my radiation oncologist. Hopefully this seizure was due to stress and poor sleep habits, not new growth of the brain tumor.

Also, Danny wants me to say that normally a typical blog takes me a few hours to complete. Because of my problem wanting to express exactly how I feel and be as concise as possible, I worry and stress about the blog. Danny had asked me to just type my blogs, not worrying so much about the grammatical errors. I love doing this blog, but sometimes it gets overwhelming because before I actually post a blog I review and review and review and if I don't have enough time to make the proper changes, I don't post the blogs that I've written.  I don't know if that makes sense. Now, I'm just going to post the blogs, and not worry if there's errors. I don't think you all will mind if my spelling and grammar are incorrect. Right?

Anyway, hopefully this post helps explain the madness that has been the past 24 hours.

Thank you for all of the support! You never know when things are going to change. I had been pretending like everything was fine, and that the brain tumor was just a bad dream. Unfortunately, I do have a brain tumor. It's not something I can ignore or change.

First Seizure

I had my first massive seizure yesterday while driving. I'm too tired to share the whole story. I'll write more later. Scary stuff. No more driving for me.

Sunday, July 10, 2011

Home Safe

We are back home, healthy and safe. I have tons of stories to share, the entire experience was absolutely unforgettable. The trip with my father was a blast, we had the opportunity to discuss everything under the sun, and it was such an honor to finally meet the rest of my Polish family.

I'm enjoying my last few hours with Danny before he returns to training, so I'll share more later. I just wanted to touch base.
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