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!


  1. We think you are totally amazing! We admire you so much and are so sad that you are going through all of this. We are praying for you! You WILL beat this!

    blessings - zooie

  2. I believe you can beat this! I also believe all your research you share will help others to fight as well. I have learned so much and am now more proactive in my health and diet just from reading your blog, so thank you!

  3. Do not let anyone take your hope away! It is the most important thing we all have. You are living a life filled with so much love, and have awesome family and friends who will do anything for you. Are you kidding, life is beautiful!!! We all have some things in our lives that are not perfect, and that we need to work on, and you are doing a great job. You are dedicated to beating it, and why not? I am so sorry you had to go through a negative conversation, some people don't get it, ding dings. Chin up sweetie, you are rockin it!!!!!!!!!!

  4. Of course you believe and we believe!!!! You got this!!! Keep up the good work! You are so loved and so many people look up to you!!! L.

  5. Hello,

    We have never met, but my twin sister studied abroad with one of your friends and she has shown me your blog and I have been following it ever since! Reading this most recent entry I really wanted to comment and say that it hurts my heart too that a friend would ever say something like that to you...What is her point? To give up? Her words are useless and I am so glad that you are moving past them. I am so impressed by your self control, drive and strength every day. I mean not that that compares at all but I have a hard time not eating that chocolate chip cookie after dinner for goodness sake and to see your willpower and all the things you have been open to trying and put the effort into doing, it really is inspirational not to mention motiviating! From reading these responses its clear I am not the only one who sees this! Thank you for sharing what you do.

  6. And my Motto...... "Say little, love much, give all, judge no one...aspire to all that is good and true... and keep on keeping on"....
    You do this so well Jess.... You are awesome.

  7. Jess,

    You hit the nail on the head. What you need now from everyone is unfailing support. You are correct that words of anything but support are cruel, and true friends shouldn't even talk about the worst case scenario behind your back...they should be hoping for the best as much as you are. I am sure your friend didn't mean to hurt you, but words can be a blessing or a curse that can't be taken back. I have to share this little ditty (I don't think it's a poem 'cuz it doesn't rhyme, so I'm calling it a ditty); it reminds me of you and the situation. By the way...you had a COMPLETE AND TOTAL RESECTION and have done more than most to fight this. You continue to kick Hermie butt so don't let the innocent ignorance of others get you down.

    ATTITUDE: The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skills. It will make or break a company...a church...a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past...we cannot change the inevitable. The only thing we can do is play on the one string that we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% how I react to it. And so it is with you...we are in charge of our attitudes. -Charles Swindoll

    Jess- You have the most incredible attitude; always have and always will. There will be those days, but you are such an inspiration to so many of us. Keep it up and when you feel down, think warm, fuzzy, and inspirational thoughts. YOU WILL BEAT THIS!

    Love and miss you,

  8. Jess, I have a Mixed Oligoastro grade III and I've thought about doing the keto diet. It sounded so intense I decided not to do it. Dr. Thomas Seyfried stressed that it also needs to be caloric restrictive to be effective. You may want to contact him. Have you read Ben Williams' book about Surviving Terminal Cancer? He beat his gbm by concocting a cocktail of off label drugs. I know you're working with Dr. Chang, he published a book on cancer cocktails, has he mentioned this approach? The obstacle is finding a doc who will take a chance and prescribe the drugs but he might be willing. That approach makes a lot of sense to me though. If you throw the kitchen sink at the cancer it makes it more difficult to mutate and build a resistance. Also, are you also familiar with the work of Jeanne Wallace at Nutritional Solutions? I'm working with them and they are amazing. I'm taking a wide range of supplements. Keep fighting the good fight. There's always hope. Feel free to contact me.

  9. Jessica - stumbled across your blog (a previous post) in searching for info on Lion's Mane and brain cancer. Compliments to you on your fight - keep it up! I encourage the ketogenic diet as that seems evidence based and effective. I am concerned though re Lion's Mane supplements... do you have a paper suggesting it's use in the setting of brain cancer? My concern comes from its ability to cause elevated levels of NGF that could stimulate tumor growth. All the other mushrooms seem like a good idea though.

  10. I completely believe in you Jess! I look through hundreds of recipes each week for my site and I will send anything that looks fitting your way. I just dropped wheat out of my diet and I am trying to stay away from "replacement flours"so looking for recipes for you will help me! Thanks for the inspiration! Best wishes and kick ass. (I've been following your story from Friday Harbor - we have many friends in common)


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