Tuesday, April 30, 2013

Cancer as a Metabolic Disease

I have been hounding UCLA for MRI results from my April 20th scan. (Apparently, Dr Liau has been out of town since Friday and will return on Thursday.) Just an hour ago I got a phone call from one of Dr Liau's colleagues letting me know that my MRI is being assessed tomorrow at the UCLA tumor board. That is where they decide if they're going to recommend radiation. Yikes. Although I will opt out of radiation regardless of what they recommend (at least I believe I will), it would definitely scare me if they think I am at a place in tumor growth that would warrant such a drastic treatment. Of course, radiation does not extend my life, and causes such irreversible damage, I feel it would be crazy for me to even entertain the thought. Although I don't have to be afraid of the damages of radiation at this point, I am terrified of what that recommendation would imply. I'm hoping to find out their recommendation (like watch and wait or perhaps even extend my MRIs to six months or worst case scenario - radiation & chemo) either Thursday or Friday. If I have to wait until next week I don't know what I will do.

As an aside, Dan and I had a blast camping and although I didn't eat too poorly, I did jump out of ketosis. It was totally worth it though - we had a blast and even enjoyed some of my mom's delicious cookies. To jump start my ketosis, I started a water fast last night. I'm excited about it, and feel great. It will only last a couple of days, and I'll rest and continue researching in the meantime. Water fasting is incredibly healthy for your body. I've been researching and emailing the ever gracious Dr Thomas Seyfried with questions about his research and book, Cancer as a Metabolic Disease: On the Origin, Management, and Prevention of Cancer, and that's what has turned me into a true believer. If you have brain cancer, you truly must buy this book and learn about real research that will effect and extend your life. It's truly amazing. It's very expensive, over $100, but it's a literal text book that will not leave you hanging. It is so detailed. And, I didn't understand figure 17.1 so I emailed Dr Seyfried and he clarified within a few hours. How cool is that!?! If you want to combat your brain cancer, to do whatever you can, there is no other place to start. The science is proven, time and time again, study after study - even replicated in humans (not just in mice).

From the research of Dr Thomas Seyfried, I have purchased a Precision Xtra Blood Glucose & Ketone Monitoring System. It will help me keep my blood glucose levels low (55-65) and my ketones stable (4.0) through monitoring, which will limit the food sources of my tumor. No more guessing. Monitoring my glucose and ketones is a natural step since I've already been recording, measuring, and limiting my foods. I'm excited to see how my supplements effect my blood glucose levels, also I've read lotions and bath soaps/shampoos can spike blood glucose. I can't wait to turn myself into a little lab rat!

To be clear, the restricted ketogenic diet is not enough to stop my cancer, however, it drastically slows tumor growth.

Thursday, April 25, 2013

Headed Home

No major complications! I even feel okay. We're at JFK and should be boarding in 30 minutes (never mind our plane was sequestered - furloughs). It has been a fabulous trip, I feel pretty great, and as always it was fantastic to see Dr N & Dr C.

Just 6.5 (+/++) hours and I'll be in Danny's arms :)

I have had so much fun with Amy, my buddy from high school. I'm so lucky that I have such amazing people in my life!

Hope you are having a wonderful day, with sunshine outside your window.


Tuesday, April 23, 2013

Only the essentials...



Saturday, April 20, 2013

MRI

Today has been fabulous. It is absolutely wonderful having my MRIs on Saturdays. I only saw one other patient, things are always on time, no one is stressed, and there's more privacy. The girls that work on Saturday are really sweet, and funny, and the nurse is really good at setting IVs. My vein busted on the first poke, but try two was superb.

Dan and I have been reviewing the MRI scans from January and today. We've been fidgeting with the enhancements, lighting, and zoom. It is so hard to tell what we're looking at, however, in the past we have seen obvious growth at least once, this time we see no obvious growth. Dan and I personally went to the post office and mailed our copy of the scan to Dr Liau. Last time it took over a month to have my scan read by UCLA, now they should have it by Tuesday. Sometimes you just need to take things into your own hands.

I'm hoping we'll get a read on my brain by the end of this week, fingers crossed that they don't find anything concerning. There's still so much inflammation, but that's to be expected. I feel relieved, and hopeful, but you never know with this stuff. For now I'm going to take a nap, then Danny's taking me to get a steak :)

Hope you all have a fabulous weekend.

As an aside, it always amazes me when I look at my poor sweet damaged brain. It's so good to me, and has been through so much. It's pretty incredible. I'm really lucky.



Thursday, April 18, 2013

Metformin, Miracle?

Yesterday was gorgeous, so I grabbed Emma, and for the first time in over a month, I walked the lake without Danny or any of my friends. I packed a satchel with ice water (a necessity if I have a seizure), aura medication, and my cell phone. It went so well that I did it again today. It's nice to get out, walking is no running, but it's better than nothing :)

I've also been researching like crazy. I'm trying to find additional treatments that will supplement my current protocol. One such addition is metformin. It's a drug that regulates blood glucose in those with type 2 diabetics and is shown to cut off the food supply of solid tumors, even the hard to reach (because of the blood brain barrier) brain tumors. I had been looking into various blood glucose medications on Saturday night, while Dan was at the movies with his buddies, when *bam* in my inbox appeared an email from a friend of the blog. David's father was diagnosed with a glioblastoma last year and somehow he happened to check into the blog again (as he had done a time or two before) and emailed me some pretty badass information about gliomas & metformin. One of the articles even referenced an increase in efficacy when combined with a low glucose style diet (hello Keto!). This is exciting! So now, I'm getting all of my ducks in a row so that I can discuss getting a prescription while I'm in NYC visiting Dr NYC & Dr Germany.

I want to do everything I can to fight smart and truly target my specific tumor. I'm quite exhausted, and truthfully, I don't feel very hopeful about this MRI or the future. I'm scared. The seizure and the numbness have really rattled me. I've had encouragement because people have reminded me that the vaccines do cause inflammation which could interfere with my brain's signals, but somehow that doesn't make me feel better. I don't want the scans to get worse, once they're bad, I've never seen them improve. The only thing I have is right now, if it looks like the tumor area has worsened, I can't bank on it just being inflammation. It's hard to explain, I guess, but if you see a duck it's very hard to say it might be a squirrel.

Sorry to be such a downer, but as this cancer progresses, and things continue to become more and more complicated, it is hard to shake things off. If I sit and do nothing, Hermie will continue to grow and he will kill me. If I sit, then do radiation and chemo, Hermie will kill me. The only way I am going to survive is if I come up with the correct combination of out-of-the-box treatments. Hermie continues to grow, we have watched him from the onset. My job, which I have yet to succeed, is to outsmart him.

Man I'm tired. I'm so dog tired from researching, from checking foods, weighing my foods, dieting, worrying about seizures, trying not to stress, stressing about stressing. My eyes are hot. Ok. It's off to my nightly soak. I'm doing everything I can to relax, but sometimes life is almost more than I can handle. Which is ironic because it's all I want.

Wednesday, April 17, 2013

Just a few more days until the MRI. EEEEEEEEEEEEK. Good thing I have distractions...










Wednesday, April 10, 2013

New Schedule

Bad news. I had an aura on Monday. I hadn't been sleeping well and as you know I woke to Emma pooping all over the house, I went into frantic clean mode and started a pot of tea. One thing led to another and before I knew it I was cleaning, taking care of bills, and running around the house like I was on crack (not that I've used crack, but I have seen a few eye opening movies). I drank four cups of black tea, and since I've been on my 600 calorie fast, my body was not capable of dealing with the caffeine, lack of sleep, and lack of food. Silly me. Luckily, since it was 6:30 pm Dan was home. We calmed me down (I could not use my right arm at all), then Dan scooped me into his arms, carried me up to bed, and tucked me in. He placed my eye covers on and my Bose headphones over my ears, slipped half of a muscle relaxer in my mouth (at my request - a goodie from surgery), I swallowed and continued to sleep for the next 14 hours.

I now have a new schedule. I am in bed by 8:00 pm (although the past two nights it has been 7:00 pm), and it is lights out at 9:00 pm. If I can't sleep, I play what I like to call the Alphabet Game. I use the alphabet and start with the letter A and I let the name of a person come into my mind and I think about him or her and I hope things for them. An example: Annie. I hope that Annie has had a wonderful day, that she's being smothered with kisses by her two precious little daughters. I hope that Annie feels loved, and valued, and that she feels completely content in this moment. It's a really fun game to play :) It relaxes me, and so far I've never made it past U. Maybe tonight I'd better start at the end and work myself forward. I'll start with Zorida. I don't know a lot of Z named people, so I get the feeling I'll be thinking of her a lot :)

Also, I stay in bed until 8:00 am. So from 7:00 pm - 8:00 am my phone will be off. Also, my big vice is reading and reading and reading and then sleeping. I can read from 7:00 pm - 8:00 pm then I have to turn out the light. And I'm back to mandatory naps. 1:00 pm - 3:00 pm. No reading at that time either (unless I want to get into bed early).

Some of this might sound crazy, or all of it for that matter, but I need boundaries. I want to go and go and clean and do stuff. I feel proud when I'm accomplishing things, but it is so important for me to take care of myself and rest. I have been a very bad girl, and I have not been resting much. That is all changing, though. And no more black tea while fasting. No caffeine while fasting, actually.

I want to be a normal girl that can have a coffee or black tea, but that has been a problem even while eating regularly. Ever since the brain surgeries anyway. It's sad, but things change. I have so many things that I can not do, or eat, or drink, but oh well. I can be sad, then I try to move on. It's not the end of the world. I keep trying to trick myself into telling myself that it's just like aging. When you get older your body starts to tell you more and more about what it doesn't want.

Anyway, I need to get prepped for bed. Sweet dreams everyone.

Oh ya! Today was day 7. I have decided to stop the fast tomorrow and switch back to the regular reduced calorie ketogenic diet until the MRI on the 20th. The only exception is that on this Saturday, the 13th, Dan is taking me to Salty's on Alki for brunch. I will stick to my ketogenic - low carb foods, but I will not limit my calories. It's a treat, and a celebration because April 13th is the three year anniversary of my diagnosis. Obviously I'm not celebrating the tumor, we are celebrating the fact that I've been alive for the past three years. My diagnosis could have been much more severe, like anaplastic astrocytoma or worse yet a glioblastoma. I am grateful every day that I'm alive, and on Saturday Dan and I will cheers to some dungeness crab and to our beautiful life together. I'm really excited :)

Monday, April 8, 2013

Happy Hair

Today (and everyday), I am incredibly happy to have hair. It was fun shaving my head back in 2010, however, the grow-out was excruciating. This time, I decided to just see if I could finagle a way to grow out all of the shaved areas, hoping that it wouldn't be a complete disaster. I knew that I could always shave the whole thing later if it didn't work out. Here are a couple of current photos of my happy, healthy short, but rapidly growing hairs. I literally just took the photos (except for the final picture which was from my dinner date with Jobi, Ashley, and Christel).



I'm so excited about my hair! How fun is this!?! Remember last October.....


Look what I can do now.....I call it my Snooki poof :)



You guys, look! I'm seriously over the stars about this. I finally feel feminine, and beautiful, and normal. I have a warrior's clandestine life that passerbys don't know about; I just look like a healthy, happy woman. You guys know that I have secrets about the war that I'm waging, but I don't like to wear it on my sleeve - or on my head for that matter. That's why I write the blog, to get things out, to share information, and also so that I can emote whenever I want and I don't wear down my friends and family (especially my poor husband) - although, inevitably, at times I must be draining on loved ones. I know that this tumor is very hard on those around me, and I'm really sorry that life works that way. I wish it didn't. I want my people (and everyone for that matter) to be happy. Wouldn't that be great? All happy, all the time. :) Genuinely.

Just a little secret...I'm giddy today - okay, THAT'S not the secret - I woke up to Emma the dog spraying the house with diarrhea. Then, because Bingie the cat has a soft stomach, he threw up at the smell. It has been quite the Monday morning. But it's all cleaned up, and although I threw up as well because the smell and disaster was truly horrific, I can't help but laugh and be glad that I'm here to be able to clean poop and vomit and live my life.

PS It's day 5 of my fast/food restriction and I'm feeling great! I'm figuring out the best food combinations to feel full and maximize my energy levels. This whole 600 calorie thing isn't so bad! (Although I might have to eat those words later for sustenance.)

Sunday, April 7, 2013

Day 4

Hi guys. I'm officially almost half way through my fast. Woo. Hoo. I do not know how people starve themselves, it feels so unnatural. I have had several questions about the research and efficacy of this fast/food restriction so I have decided to post the most informative research paper I've found. You don't have to understand the whole thing, skimming is almost just as good, either way I hope if you have questions or concerns this paper alleviates any doubt that I'm doing the healthiest thing for my body.

An added advantage to this ketogenic diet that I've been on for the past few weeks, and now the restricted style fast, is that I'm down to 142 lbs (starting point hovering between 150-155). I don't care so much about the weight loss so much as the realization that as each pound of fat evaporates from my body I am eliminating Hermie's pantry. Bwahaahaha!! So awesome! I have had much excitement in the tumor bed, and my right arm and hand are actively going in and out of sensation (mostly out). My right side is very much in tune with my tumor so any activity excites me. It's also scary because it could mean bad things, like growth, but I'm copying research, so it should only be positive results. I'm trying to tell myself that anyway :) I'm depriving myself of glucose and that's exciting! We know Hermie can't eat ketones, so that's a great start.

Anyway, there is so much about this concept, like checking blood glucose and blood ketone levels, etc., but I'm not going to go into it all. Hopefully this paper is helpful. This is definitely tough, but I want Hermie out of my body. I don't want to manage my life and just slow Hermie down. I want to live healthily, prosper, laugh and travel and have a day when my family can come together at a holiday or special occasion and actually be able to celebrate, to no longer have the black cloud hovering over all of us. Hermie's black cloud is ever present, and I'm sick of him. I try to remain positive, but living with a ticking death clock is very stressful. I want him gone.

Friday, April 5, 2013

Seyfried's Fast

After further research, yesterday, I started a therapeutic fast. For brain cancer, and seizures, it's recommended to do a 7-10 day water-only fast. You can do up to 600 calories and extend the duration if the water-only restriction is too hard for you. Or for me for that matter.

It is my second day, and I tried to do only water, but it hurt my stomach too badly. I decided I will start this off with the shortest duration (7 days) and the maximum allowed calories (600). Start with the easiest option for the hardest task :) that's my new motto.

See ya Hermie. No glucose. No carbs like usual. Only 600 calories a day. I feel like I have my armor on and I'm headed into battle again. My MRI is in two weeks, Saturday April 20th. The results of this one are huge. If the area they're 'watching' grows, Dr Liau said they will want me to do radiation. The thought alone makes me ill. So much is riding on this. You'd think it would get easier, and easier, but as things progress it ups stakes.

Thursday, April 4, 2013

Over A Decade Later

How fun is this, one of my college roommates was in town for work and we were able to meet up for a dinner. So fun! We hadn't seen each other for 11 years. Isn't she just the cutest!?!? Christel and Ashley joined us. It was hilarious, and fun, and I was again reminded of how lucky I am to have such a wonderful life :)

Yep. Those definitely ARE Texas shaped sunglasses.


Thank you for all of the uplifting comments on the blog, and the helpful hints! I should clarify a few things...

1. The majority of my days are on the restricted ketogenic diet. I have lost about six pounds because of it. Some days, on the weekends or if I'm just in the mood to eat more, I eat the generic ketogenic diet. It's very important to restrict my calories in order for the ketogenic diet to starve my brain tumor or alleviate my seizure problem, but in order for me to stay on the diet I have to allow myself days when I can eat as much ketogenic friendly foods as I want. That way I don't feel deprived. I have been in ketosis for almost two weeks now. I have not cheated, nor have I wanted to. Not yet anyway :). I keep my carbs lower than 20 grams per day. If you want more information, as Scott commented, check out Dr Thomas Seyfried one of the foremost researchers on the ketogenic diet, brain cancer, and seizures (along with other diseases).

2. I have been taking lion's mane mushroom (H. erinaceus) supplements in order to boost my t-cell growth and macrophages which together increase your body's ability to fight cancer. However, thank you for the anonymous comment lion's mane stimulating nerve growth factor (NGF), and the subsequent effect on tumor growth. That caused me to research further and learned some frightening things. The great thing about supplements is that there are many options to increase my immune system, and after further research I will not be taking the lion's mane mushroom. Thank you for the help!

I appreciate any and all suggestions/information. Sometimes it's hard for me to sift through things, but eventually I make it through. Research sends me on a billion tangents and when people share their research/resources it gives me a better direction. Thanks!!

And thanks again for the support, for encouraging me to believe. Your help and love are what keeps me energized. Without all of my friends, my family, the readers of the blog and my adorable husband, I would long have fallen into a deep depression. So thank you. From the deepest part of my heart, I appreciate you all!



Tuesday, April 2, 2013

I Need To Believe

This last weekend was such a blast! Danny and I were able to pack Emma and a bunch of goodies for a quick road trip to Wenatchee. We didn't tell my parents we were coming, and they were completely surprised and ecstatic - I'm horrible about keeping surprises secret, but somehow I managed. As we drove closer and closer, I became more and more giddy. I am so lucky to have two amazing parents who give me so much love. They are incredibly supportive. I had been needing more hugs lately, and on Saturday morning my parents engulfed me, it was so healing. I love the fact that I can tell my parents anything. They understand so much because they see things that I'm going through, the struggles, the demands on my body, on my mind, they know so much because we talk almost daily. But it's different to get a hug :) A hug might be the best support I could ever get.

My Saturday morning hug came because I was honest with my parents about how I feel about my future. I have been trying very hard to keep a brave face, to shove down the thoughts of failure, of death, but it's not as easy as it once was. Unfortunately, in January, a very close friend said to me, "You know, there's a chance that none of these treatments will work. That there's nothing you can do." It was quite possibly the most painful thing that I've ever been told, and I said that to her. Obviously, you guys understand that I realize, only too well, that I might just die. That my fate may be sealed. That I'm spinning my wheels to no avail. It's something that crosses my mind several times a day, then I try like hell to be positive, to fight on. Just for future reference for friends and family, I only want support. I want to believe - I NEED to believe - that I can beat this diagnosis. I need unfailing support. I can not have anyone say to my face that I might not make it. You guys can say it behind my back, that's fine, but not to my face. It's just unnecessary, and cruel. Her words resonate in my mind and I hate it. It physically hurts my heart, my soul, and sucks at my hope. And I know that it's stupid for me to be effected by someone's words, but words are powerful, especially when they echo your own fears. Ok. Enough of that, I just had to get it off of my chest. For the record, I know that my friend didn't mean to hurt me, but obviously it did. Some things just don't need to be said.

Dealing with cancer is a 24 hour 7 day a week kind of thing. I'm constantly trying to think positive thoughts, making healthy decisions, researching supplements, diets, treatments, doing anything I can so that I know that I'm up on all of the latest treatments and tricks that fight brain cancer. It's exhausting because as I research I also learn so much about the things that don't work, I read stories of people time and time again that have not made it. Brain cancer is one of the least forgiving cancers. It ravages your being, your mind, who you are. Reading and researching is emotional and scary. I feel I need to do it because I learn so much, that I need to be my own expert, my own advocate, but it's terrifying. It becomes overwhelming and that's why I need the outlet of this blog, to just purge my feelings and fears. Somehow, being open and honest about how I'm feeling gives me strength, it makes me feel honest, and transparent.

On a positive note, I have officially been in ketosis for 10 days. Ketosis is when your body uses ketones to burn energy instead of glucose (ie: sugar or carbs). The science behind this diet of low carb, high fat, medium protein, is that your body's organs and cells can fuel them selves off of ketones, and tumors and cancer cells can only eat glucose. Therefore, the less glucose you provide your body, the more you starve the cancer.

I have tried this diet before, several months after my first brain surgery, but it was too restrictive. I was still yearning to eat the foods of my friends, to share wine with the girls, I was unable to completely commit. Thankfully, I have a renewed strength and amazing friends who don't mind if I'm drinking Pelligrino, or abstaining from most foods. The girls that I've been able to spend time with, Christel, and Libbey, and Laura, have been so supportive. They want me to succeed above their own immediate desires, discussing the details of my lifestyle so that they can join in when we're together. It's so nice to be able to talk about the details of what I'm going through, what I'm researching. Each time I explain the ketogenic diet and its' relevance to brain tumors and seizures, I gain further insight into the whole process. It solidifies my memory and makes it easier to continue. Also the girls have all kinds if ideas on recipes, we end up turning it into a fun excuse to do something different, to problem solve.

Over the weekend Dan, my parents and I golfed 9 holes at Desert Canyon (We played best ball - which I must be honest took three hours. Ha!) and it was a blast. My goal these days is to continue to get out and enjoy life. It requires lots of naps and resting later, but it is so worth it!

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