Thursday, March 13, 2014

Dark Clouds Don't Dance

Why are we so mean to ourselves? Especially women. I know I'm not the only one who does it. I have a little voice in my head that is really negative. I don't know why he's such a jerk, or why he seems to be male, but I don't like it. I know Dan would tell him to buzz off, why can't I? He pipes up when I look down at my thighs, when I pass my reflection. He always pipes up about what I eat, how much I eat, my activities, my life. He's really getting on my nerves. Why do we allow that, those mean voices in our minds? To a certain extent, I guess it can be a good thing because it can encourage change, but that's only if you're motivated by punishment and fear. It gets worse when I research, when I find myself falling through the vortex of the tumor world. I watch the amazing lifestyles that some lead, full of perfect calorically restricted ketogenic diets, hundreds of pills a day, tonics, meditation, exercise, rest, these people are amazing - not cheating, just pure dedication. Some have gone well over a year without a single cheat. I read and I'm inspired, and yet reading about their journeys make me feel like I'm a lazy slouch, that I'm not trying hard enough, that I'm failing, that I'm killing myself because I'm not making smart enough decisions, like the green apple I had for breakfast this morning. In the restricted cancer diet, eating a green apple might as well be a cookie. It's sugar. I know, because I've tried so very hard, that I am not cable of being completely regimented. It makes me feel crazy, and trapped, and snuffs my little light of happiness and hope. I want to live a long healthy life, but I also want to enjoy myself. But, because I've researched the crap out of cancer diets, I also know too much to be ignorant so I end up never feeling happy with my choices. If I'm too strict, I'm miserable. If I'm too lax, I feel guilty. The little guy in my head is mocking me. Jerk. I'm doing exactly what he wants me to do: feel crazy.

So what do I do? Do I quit researching, quit reading up on new treatments, new information? I wish I had the type of constitution that could just slough stuff off. I'm working on it, but man is it hard. Clearly I need to force myself back into yoga and meditation. But I'm so bad at it. Both always feel great at the time, but I don't crave them, instead they feel kind of like a chore. I feel bad even saying that, but it's how I feel. I guess I have to just keep up the running. I feel like that a-hole in my mind that loves to tear me down is not a runner. He hibernates. He hates it. What a lazy SOB. See, look how you guys just helped me work that out? We just found his Achilles heel. Ha! I think we all have a nasty worm that infiltrates our thoughts. The trick is to outsmart him.

It's stressful living with the MRI's and weight of having a tumor, never knowing if you're doing enough. I don't want to get a bad scan because at that time it will be too late to backtrack and be more strict. Ugh. The world of brain tumors. Never knowing if you can beat it, never knowing the perfect combo, if those consistent apples will be enough to feed the tumor to kill me. Who would have thought this could be so hard. So detailed. So complicated.

As for the melanomic whatever that is growing on my breast (and the other mole), I have the OR scheduled for April 3rd. My reconstructive surgeon is pretty cool too, so that is a huge relief. It will be nice to get those areas removed. It's a heavy weight watching them grow. Of course, just as I unload my fears, my stresses on this blog, I am still chair dancing as I type. I've just remembered that when you dance, even if it's just with your shoulders, you can't have a dark cloud. It's impossible. Note to self: dance more.

A few things that made me smile today:


  1. would you share those sites or blogs that gave you much 'stress' ? (we are hoping to learn from as many others to help ourselves) thanks.

    1. Of course! I have to preface by saying that I was stressed because the people are amazing, driven, and just determined - much more so than me. They are doing it all perfectly, and I am very happy that they are able to stick to their guns. They are total badasses.

      Here's my two faves:

  2. hey jessica, don't be too hard on yourself with ketogenic diet stuff. all the research i've read about ketogenic diets and brain cancer which is a lot for months and months on end. still leaves many mixed conclusions and contradictions. and all of those ketogenic diet studies were on glioblastomas. which are a different genetic mutation to low grade gliomas. most of them supposedly are missing the ability to use ketones to grow. but that's not necessarily the case when it comes to lower grade tumours with a different genetic mutation because i have also read that low grade brain tumours aren't necessarily missing the genes that allow their cells to use ketones.

    i've read many more articles about animal proteins and fats causing spikes in igf-1 which is a strong tumour promoter. so which is it protein, fat or carbs that cause growth. the single thing i've seen work consistently in studies is calorie restriction, whether it be keto or not. in fact i've seen the non keto calrorie restricted diet outperform the ketogenic CR diet in certain studies.

    not to mention a ridiculously high fat diet can make you sick in other ways besides cancer. also your body can produce glucose from its own tissues extremely easy in the complete absence of any dietary carbohydrates. a diet very restrictive on fruits and a good proportion of vegetables because they are after all carbohydrates, your body and therefore immune system will be lacking many vital nutrients. with a low grade glioma you are fighting a long battle, a very different battle to those with GBM's. my main point is, you seem to be stressing yourself out a lot over this, having a focal point to try and control your own destiny is an awesome feeling, so this is why controlling your diet feels like your making positive strides towards outliving prognosis. but for example that beatyourowncancer blog has a lot about eliminating stress.

    its such a confusing world of contradicting research out there. its easy to go crazy. because you know your willing to do whatever it takes. but there seems to no definitive or conclusive answer as to what that thing you have to do is. read through your friends astrocytoma options page on diet again, especially about the ketogenic diet bit and come to the conclusion whether you think this level of stress about an apple is justified.

    i'm not saying throw away any of your ideas about keto being the answer, i agree keep sugar low. but an apple may throw you out of ketosis for a while, but your tumour won't go too far on it.

    anyway, this was all typed out really fast. hope it makes some tale of sense. the end point is happiness and quality of life is far more important than length of life. enjoy it. don't hate yourself for eating something that might not actually have any effect whatsoever. i'd like to add, this is my favourite blog for BT's and you are my inspiration of hard work and dedication.

  3. Ben, Thank you, I needed that. Like a quick burst of reality. There are so many contradictions, and you so eloquently reminded me of so many, and reminded me to go back to the AO website page - I always find comfort in Stephen's research and words. The whole journey can make you crazy. Thanks for the distinction between low grade and high grade - I always forget that part, how they metabolize differently. There is so much to understand, recall, each time I'm researching. I've got to be able to put things in their place.

    You just made my night. Thank you!!!!

    1. no problem, just glad i could return a favor. his website is brilliant. it will help thousands of people to come.

    2. I couldn't agree more. A selfless genius that Stephen.

  4. Hi Jess, Though I am not as well versed on the Ketogenic diet as you and Ben I do know that a low glycemic green apple (which I use in my green juice) is not going to cause your cancer to grow. I eat dark chocolate everyday and after my surgery I made a batch of brownies for three weeks straight. I eat cake at birthday parties and I don't stress about it at all. My scans, every 2 months, have been great, improving even. I think if you stick to your diet 90% of the time you are ahead of most of the world. Enjoy that 10% with utter abandon and don't stress about it. The stress is much worse. Food is for fuel but also for pleasure, don't deny yourself everything. I wish that I considered a green apple a treat! I have switched to a mostly vegan diet and I am proud of myself for sticking to this diet for almost two years now. I never saw myself eating like this, ever. Be proud of yourself! At least you run, I can barely walk :)

    Want to hear something really eerie? I am having breast reduction surgery on April 3rd. How weird is that? I swear we lead parallel lives. BTW I also have had many, many moles removed, some requiring more extensive surgery and stitches. I have always escaped melanoma, sometimes just barely, but I understand what you are going through and I'm sorry you have to deal with this too.
    Sometimes I feel like if this diet stuff is all it's cracked up to be we shouldn't ever have to worry about getting cancer again-any kind, right? Our bodies should never allow a cancer cell to grow out of control. It's so exhausting. Call if you want to talk.

  5. Hi Jess- rare for me to comment twice in such a short time, but I also had to chime in after reading this one. I was laughing out loud reading that you are feeling like you aren't doing as well as others and you are discouraged by that. I read your blog and think ALL THE TIME that I wish I could maintain the Keto diet or even eat remotely as well as you do. I have done the research as well and I always come out completely confused. My neurologist has stated the same as above, that Keto is definitely worth trying for someone with a higher level tumor, and he does not "discourage" it for me, but points out that the evidence does not yet show improvement for lower grade gliomas based on this diet. By the time I am done reading and researching everything- I just feel entirely frustrated! But again, just so funny that you feel that way because you have always been an inspiration to me and part of my own guilt when I know how well you are doing. As also commented by Katie above- I WISH I could feel guilty about eating a green apple.
    Last, it is interesting to me that I have about a million moles and have had to have them removed multiple times, but definitely an increase since my tumor dx. Again, 3 people on the entire internet is certainly no statistically valid sample, but again, interesting to me.
    Reading your post and the comments once again made me feel better today- I am not kidding, this last mole that was removed close to my knee; I swear they took the front half of my leg off!
    Anyway, I ramble, but want you to know that you do encourage people, and you are doing the right thing, and having this tumor is frustrating and crazy and changes your life in so many ways- good and bad.
    Take care, and thanks again,


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