Farts Can Cure Cancer? What?

Have you guys been hearing about the new reports that fart smells can fight cancer, and heart disease, and diabetes (among other things)? It's crazy! And gross. But absolutely hilarious! I'm not sure how it works, or if smelling farts is actually good for you like they're reporting, but this article is where all of the madness is derived from. Apparently, hydrogen sulfide (the rotten egg smell), in small doses, can actually restore the mitochonria's function. The mitochondria is essentially the digestive system of the cells in our bodies, they often refer to it as the powerhouse of our bodies. As you may recall Dr Thomas Seyfried who does all that research on the ketogenic diet and cancer, believes cancer is an issue with the mitochondria, "The mitochondria—the main power generators in your cells—are believed to be the central point in the origins of many cancers. Your mitochondria can be damaged not only by inherited mutations, but also by a wide variety of environmental factors and toxins". So, maybe instead of the ketogenic diet, perhaps we just need to smell toots. Haha! Gross!! Maybe the ketogenic diet isn't sounding so bad right now.


I hope you know I'm saying all of this tongue and cheek. I don't think you should sniff smelly toots to cure yourself, but what do I know, the research is just coming out. 

Sunday Dennis Medical Fund

I have never met a Canadian that I didn't like. In fact, all of the Canadians that I know are absolutely superb. I adore them. With that being said (even though, essentially, it's irrelevant), a close friend of my buddy Stephen (Astrocytoma Options) just forwarded me an email. It's a letter from a desperate husband to save his wife, the mother of their three young children, from a newly diagnosed aggressive brain tumor. I realize that many of my readers are fighting their own cancer battles, or they are family members who are the support system, but if you are so inclined, and capable of donating, the information is below (I will copy and paste the letter). There are so many who are fighting their own battles, so of course, there is no pressure here. I just want to spread the word and help out in any way that I can. You guys know how much I advocate going for the best medical care - even if you have to travel. That by driving the demand we support cutting edge treatments that will become more accessible for everyone, and that's a very powerful thing. To support pioneers in treatment is a win for all brain tumor fighters, current and future. So whether you can donate, or just help out by sharing their story (I think there's a way at the bottom of this post to share on other media sites), I appreciate the help very, very much. At the end of the letter is a video of Sunday, the wife and mother. She's a singer/songwriter. Let's keep her singing!

We need to get to UCLA

I can hardly believe that I am writing this letter, but I am. It the hardest letter I've ever had to write in my life.  On Wed. Dec 31st, Sunday was diagnosed with a brain tumor.  On Thurs. they sent us to Victoria General Hospital where we met with Neurosurgeon, Dr. Evan Frangou, to talk about removing the tumor.  On Fri., they ran a few more tests, did an MRI and again we met with Dr. Frangou.  He let us know that without a tissue sample there was no definitive answers as to what kind of tumor it is, but based on test results there is a high probability that she has a high grade Gleoma, a fast growing, aggressive form of brain cancer otherwise known as Gleoblastoma.  There are very limited resources in Canada for treating such tumors.  It can be removed, hit with radiation and high levels of chemo, but this is not a cure.  So it's just a matter of time before more tumors grow.

Upon learning about her diagnoses, Sunday contacted our friend Stephen Western, a patient advocate, and an incredible researcher of brain tumors and the advancements of curing these types of cancers.  He has an incredible website http://astrocytomaoptions.com/ with lots of information on these types of tumors and treatments that are being studied.  (Please take a look at his sight and make a donation to help further his research.)  He informed us about a clinical study being done at UCLA under the direction of world renowned neurosurgeon Dr. Linda Liau, M.D., Ph.D., Professor and Vice Chair of Neurosurgery, and Director of UCLA Brain Tumor Program.  This clinical study is on Dendritic Cell Vaccine.  In other words, taking some of Sundays blood and training her DC cells to destroy tumor cells and re-injecting her with that blood whereby eliminating all Glioblastoma cells. This study is being done at the UCLA Department of Neurosurgery and David Geffen School of Medicine at UCLA.  Using this technology, they have been finding incredible results killing all Glioblastoma cells having no tumors return.

To qualify for this study the protocol requires us to have the tumor removed by Dr. Liau at the UCLA Medical Center.  We have to pay for this part ourselves, then every other cost is covered by the clinical study.

This is why I am writing the letter.  I am asking for everyone and anyones help to get us to UCLA.  We need to raise funds to help pay for the cost of surgery, anesthesiologist, pre and post op care and hospital fees.  Right now our goal is to raise $300,000 by the end of this weekend.  Everything is happening so quickly so I am waiting to get a estimate from Dr. Liau but I believe this will help cover most cost if not all of a procedure of this magnitude.  Because of the kind of tumor, the size and the location, we don't have time to waste, we have to act quickly.  If we can have the funds together by Monday, January 5th, we can get ourselves enrolled and down to UCLA by the end of this next week.  If you have money or anyone that you know has money I am asking for substantial donations to be made for Sundays care.  This is my wife's life and the momma or our 3 children, so I am not afraid to ask.  Please help us in any way that you can.

Know that any contributions made will help save Sundays life and contribute to saving hundreds more, as it will help in the advancement of this kind of ground breaking technology, Dendritic Cell Vaccine, Immunotherapy.

All Canadian funds can be sent to https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=JP4A94YKEV75C

All US funds can be sent to https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=FMPMQW2DX3R5E

Thanks you in advance so so much.

In love and light,

Jason (Sunday, True, Cyrus and Ishan too!)



Here is a link to her four songs if you'd like to hear more of her beautiful voice.

Carrageenan Conspiracy

This is random, but I'm really excited so I have to share. To begin, I have to preface that I am addicted to ceremonial grade matcha green tea (it's shade grown green tea leaves ground or milled into a fine powder). I drink a glass or two, or three each day. It's known as one of the most powerful anti-cancer compounds, and it is my crack. No kidding, when I started drinking it regularly, about a month or two ago, Dan was like, "What's the deal, you are even goofier than normal. And your energy is insane." I told him my secret, and he laughed. But laugh all you want folks, it's the most amazing mood booster I've ever had. Sure, caffeine gives you energy, but a boatload of antioxidants mixed with just a little caffeine (it's a natural byproduct of the green tea) is the way to go. Hence the matcha. A good ceremonial grade matcha smells like grass, and has a vibrant green color, and as you drink it you know you're giving your body exactly what it wants.

Now, Dan can't stand the taste, and I admit I don't love it, but I have been making it with a few dashes of hot nut milk which creates a luxurious flavor and texture. I had been using unsweetened almond milk, but then I remembered that carrageenan, which is in the majority of nut milks (among other products), is really bad for you. Like really, really bad. Cancer causing bad. So, I just pulled up a couple of notes on carrageenan as a teaser (hopefully it'll open your eyes if you weren't already familiar)....

"Carrageenan predictably causes inflammation, which can lead to ulcerations and bleeding," explains veteran carrageenan researcher Joanne Tobacman, MD, associate professor of clinical medicine at the University of Illinois School of Medicine at Chicago. She says the food ingredient irritates by activating an immune response that dials up inflammation. Her previous work showed a concerning connection between carrageenan and gastrointestinal cancer in lab animals, and she's involved with ongoing research funded through the National Institutes of Health that is investigating carrageenan's effect on ulcerative colitis and other diseases like diabetes. (Prevention Magazine)

That's the crazy thing, inflammation feeds cancer. Inflammation feeds disease. And what I find the most disconcerting is that our government knows that carrageenan is cancer causing, and cancer promoting, and they don't limit its' use. Or ban it. There is all kinds of research being done at the National Institute of Health, which is a US government organization, proving the dangers of carrageenan. They know it's bad. They know it's a killer, and yet our government doesn't protect us.  

I have learned the hard way that I have to be responsible for my own health. That no one is going to fix my cancer, that no one person has the answers or ability to heal me, but I can be an advocate for myself. I can read the fine lines and hold myself accountable. I can not expect our government to protect me. It is my responsibility to investigate what is good and what is right for me and my body. And that is what led me to create my own nut milk yesterday. And holy cow it is delicious! And it's easier than you think.

Ingredients 
1 c raw cashews
4 c filtered water
1/8 tsp sea salt
dash of vanilla extract (to taste or omit)

1. Soak the cashews overnight or at least for 4 hours
2. Rinse the cashews
3. Toss the cashews, two cups of filtered water, the salt and vanilla (if you chose to add it) into a quality blender (I use a vitamix) 
4. Turn the blender on to low and slowly increase speed. Blend until it's nice and frothy, and thick. At this point you can add part of the final two cups of water, or all of it. I like my milk to be thick and creamy, similar to whole milk or cream. If you're more into 1% or fat free milk, add in all four cups. Blend it in nice and good, then pour it into a sealable container for the fridge. Note: The milk will further thicken once in the fridge.

I love this nut milk because, unlike almond milk, you don't have to strain anything, or remove anything. You're using the whole nut, you don't remove the fiber. The entire recipe is so easy it's ridiculous! 

Although in 1972, the U.S. Food and Drug Administration considered restricting dietary carrageenan to an average molecular weight > 100,000, this resolution did not prevail, and no subsequent regulation has restricted use. Because of the acknowledged carcinogenic properties of degraded carrageenan in animal models and the cancer-promoting effects of undegraded carrageenan in experimental models, the widespread use of carrageenan in the Western diet should be reconsidered. (US Library of Medicine National Institutes of Health)

I'm not trying to preach, I just wanted to share because I'm fearful about what's happening to our bodies, and I care about you and I care about people in general. It's amazing how important it is to read the ingredients in our foods. It's especially important to research ingredients if we don't recognize them. I mean, what the hell are we eating these days?!? We're eating non-foods. We're eating chemicals, and it can't be good for us. It's not natural, but it's hidden in our natural foods - like almond milks. People think that they're helping their bodies by choosing a healthy milk alternative, but who knows, perhaps with the carrageenan the nut milk is just as detrimental as hormone filled cow's milk. I'm digressing, just ignore my little rant. I rant because I'm frustrated that there are non-foods allowed in our food supply that cause and promote cancer. It's a bunch of crap. But don't take it from me, you can make your own decision on what you think. Regardless about whether or not you agree with me, just play around in the kitchen and try this delicious recipe. I really think you'll like it. :)

How do we celebrate?

I never thought I'd feel this way. I never thought that I would use these words, and for good reason. Doctors don't use the term "remission" for brain cancer, because "it always comes back". At least that's what all of my doctors have said (minus my neurosurgeon at UCLA, I haven't heard her speak in absolutes). But today, I feel like I'm in remission, that I'm cancer free. I'm sure I still have cancer cells in my body, like we all do, but something feels different. I feel lifted, and whole, and healed. Does that seem crazy? It feels crazy, but it feels right, like I'm on the correct path with the appropriate protocol.

 
I don't want to jinx myself, so please knock on wood, but for the first time since diagnosis, I feel human. I feel normal. I feel like an epileptic (that may never change), but not a cancer patient. I'm continuing all of my current treatments, but now I'm doing it by choice not out of duty. And I know that this shift alone will do wonders for my psyche.

I never thought that my MRIs would get pushed out to 6 month intervals. It crossed my mind once or twice, but it was like imagining a unicorn. A wonderful thing to smile about, but not a reality. But the world tricked me, see - unicorns DO exist, and I love them! 

I keep thinking about this insane tumor diagnosis and how much it has changed my life. I have gone through so many wild things, like the awake brain surgery, or the hematoma that caused major brain damage, forcing me to relearn everything from using a fork, to learning how to run again, and read again, and regain my vocabulary. There were times when I couldn't even understand concepts. My IQ was ridiculously low. I remember undergoing hours and hours of testing only to be told by one of the top neuropsychologists at University of Washington that I would never recover and read again, that I would never be capable of high level thinking or processing. I remember sitting in that same doctor's office with Dan as we went over the results, as tears streamed down my face. Man how things have changed. Not that I'm that smart, but I'm more than getting by. 

So what do I do now? How do we celebrate?!? For starters, I have decided to start training for a half marathon. I haven't run a half marathon since before I was diagnosed, and have been hesitant to push myself too far because I was afraid of seizures, exhaustion, running down my immune system, elevating my blood glucose for long periods, you name it, I was scared of it. But, I was very inspired while watching the Iron Man coverage this weekend, and I reminded myself that life is short, do what you enjoy.  So I'm starting with a half marathon in January, and my other goal is to do ChelanMan in July, the Olympic length triathlon. I don't know if you guys know this, but when I was diagnosed, I was supposed to participate in the Olympic ChelanMan that summer (I was diagnosed in April) but obviously, that didn't happen. I feel like things are coming back around full circle. I honestly never thought this would happen. It would have been too much to hope for - to live a normal (ish) life. 

So if anyone wants to join me for ChelanMan (you've got several months to decide) please please think about it. Let's get nuts. Let's get silly and have some fun and sweat, and laugh, and feel alive.

Ethically Ending

How fortuitous is this article? Very fitting considering my most recent post. The article is good, but the video at the end is eye opening, and heart wrenching, and beautiful, and real. These are the things that we must ponder when dealing with cancer. It's a very dangerous topic because people tend to have polarized, strong opinions about ending your own life, even when you're terminally ill. I have a lot of emotions wrapped into the debate, but I'm not hard core on either side. My motto, though, in life tends to be, "Who am I to tell someone else what they should or shouldn't be able to do with their life, and their body."

She's young. She is newly married, and was trying for kids, then boom, life changed in an instant.

I respect her decision. I also don't think I would have the cojones to swallow those pills. But maybe I would. You never know how you would handle a situation, until you're in it.

One thing is for sure, October 30th is now burned into my mind, and my heart. I will be thinking of Brittany, her husband, and her mother for a long time to come, I can tell.

Joining My Herd

My lovely, timid, garden finally produced her first cucumber! (I'm pretty sure it's my fault for under-watering.) There is nothing more delicious than snipping a warmed-by-the-sun cucumber, and taking a big ole bite. The flesh was soft, giving way to a watery crispness. Yum!

I have some pretty exciting news. Remember when I mentioned that this year, my 34th, would be a time of challenges? That I was redefining fear in my life? Well, on Sunday I am flying out to Moab, Utah for a week of rock climbing. It's through a program named First Descents. I applied expecting to hopefully make it into a program for next year, but just a few weeks ago I received an email about a cancellation so I quickly started jumping through hoops. The program I was trying to get into was surfing in Santa Barbara, and I was stoked, but after my physical and final documents made it to their medical team, it was decided that because of my history of seizures I'm not allowed in their water programs; I at least have to be seizure free for a year. (There goes the river kayaking, too!) But, as a very kind gesture, they sneaked me into a rock climbing program instead. I'm so nervous.

Oh ya, did I mention that all the attendees are cancer fighters and survivors?!? That's the part I'm most excited about. I've written about my isolation before, about how hard it can be when you're fighting tumors or cancer, that you can't relate on the same level with your friends, or even your family.

"First Descents offers young adult cancer fighters and survivors a free outdoor adventure experience designed to empower them to climb, paddle and surf beyond their diagnosis, defy their cancer, reclaim their lives and connect with others doing the same."

I can't wait to join my herd. (Does that make me a cow?) I can't wait to make friends. I can't wait to laugh! I can't wait to freak out from the heights. I can't wait to kick some rock ass. I can't wait to sweat. I can't wait for the challenge. I can't wait to earn my fear. I am so sick of shooting up out of bed from nightmares. I'm sick of nightsweats. I am sick of sensing tingles, and changes in my tumor cavity, always wondering, Is that the tumor? Am I feeling angiogenesis, a new blood vessel feeding Hermie, helping him grow? I'm sick of fearing brain tumors. I'm sick of fearing fear. It's not that I want to change how fear plays a role in my life, it's that I am changing how fear plays a role in my life. I am taking control now.

I feel guilty taking a week long vacation while Dan works. I feel guilty taking time off of my life, my research, my job helping my friends fight their cancers. There won't be an internet, or I've been told it's spotty, so I'll literally be gone. I feel guilty and lucky that I get to go on this free trip, and get this amazing experience. I feel like this will be a game changer. That it will be a catalyst, empowering me, humbling me, recharging me. In my life, at each turn, I just keep getting gift after gift. Who gets to live like this? This girl. And she's damn grateful.

Out Living

Oh I have been laughing at myself. Me and my big book. Me talking about my fancy new brain. The second I started typing about my progress, Doubt started creeping in. He's such a jerk, that Doubt. I'm macabre in nature, and can not help but wonder if this next MRI in October will prove to be the one where Hermie shows back up. Life is too good. It's going so well. When Doubt spoke up, I literally laughed out loud. The irony of life. You never know when your luck will end. All I can do is enjoy each day, seek out the big books, strive to be happy, push boundaries.

This past weekend Dan and I went camping in north central Washington. We brought friends, new and old. My cell phone quickly drained as we drove closer, and as I unplugged from the rest of the world, my vision became clearer, the sunshine brighter, the river much more blue. I took deep breaths, inhaling the dry wind. I allowed the breeze to ribbon around my neck, sparking private smiles. I'm not much for camping; I'm a girl somewhat tethered to electricity, to amenities. But, man, did I enjoy myself. I swam and swam, lap after lap, in the river. I goofed off with the kids. I sneaked away to read my books. I went to bed early with the sun, and rose with the quail as the sky pinkened. I slept hard, hard on the hard ground. I have bruises on my hips, battle scars. I look at them with pride. It reminds me that this is my year of challenges, of getting out of my comfort zone. The bruises remind me that I'm alive, that I'm out there living.

Where did the girls go!?

Dan caught us snoozing

Our campfire smoke made it a bit hazy, but what a gorgeous spot!

On another note, I've been meaning to mention that for the first time the FDA has approved a pharmaceutical CBD to treat glioblastoma. (Remember my post on CBD for brain tumors and seizures?) The drug was given "orphan drug status", here's the press release, or you can read it below. This is fantastic validation for CBD advocates! The FDA had already granted "orphan drug status" to the same pharmaceutical company, Insys Therapeutics, for two rare forms of epilepsy (Dravet Syndrome and Lennox-Gastaut Syndrome). Boy do I love it that I live in a state that makes it easier to procure, and use medical marijuana. Even though CBD isn't psychoactive, you still have to have a license to grow marijuana, even if it's industrial hemp (which still hasn't passed in the House). We're getting closer, though, to allowing us cancer fighters to do what we have to do to survive. This is our life, our future, our bodies. Ultimately, we should be the ones making the decisions, not the government. We're a unique crew, and should have flexibility, even carte blanche.

Winking at Fear

Yesterday, I turned a year older. And, it has officially been 4 years, 3 months, and 25 days since I was diagnosed. I have had three brain surgeries. I have tried almost every brain tumor diet on the planet. I have gobbled hundreds of thousands of pills. I have researched. I have exercised. I have meditated. I've dodged seizures; I have endured them. They've injected shot after shot to boost my immune system, and to fight my tumor. I've done the high dose IV drips. I drop venom in my nose, and I swish it in my mouth. I've traveled the country, and around the world, to meet with doctors for second opinions, for surgeries, and treatments. All that, and so much more, and yet I feel like an imposter, like this isn't my life.

I got the email yesterday, a great birthday surprise, that I am included with five other bloggers to be posted on the National Brain Tumor Society website. As I read the other posts I felt like a voyeur, like I didn't belong. It's confusing because I relate to so many of the things that they wrote, yet, with others I have no experience: radiation, chemo. It's as if they were long lost family members; we had never met, but somehow I recognized myself in their faces. I loved the variation of stories, of perspectives, of journeys. The voices, although different, carried similar threads of hope, fear, frustration, gratitude, and determination. Everyone had gone through a lot, whether it had been surgery, or treatments, or a combination. But some of these fighters truly astound me with what they are conquering, what they're capable of enduring. I read the blogs yesterday but I keep coming back to reread them, trying to soak it all in. When I was first diagnosed I tried support groups and they were horribly depressing. In contrast, I'm finding that those who chose to blog about their experience aren't just wanting to connect, they want to help. They want to reach others, far and wide, in the hope that their experience will save another some trouble; to help connect the dots faster.

I am now 34 and it feels old. It feels solid, grounded in my situation, in my brain tumor reality. Kind of stuck. And in my life of contradictions, I feel removed, and floating. I was emailing, the other day, with my cancer buddy Lo, and we were recognizing how you get diagnosed, then everything stops. You keep swirling through scans, and treatments, and scans, and treatments, and year after year you get older but your world stays the same. You try not to, but from time to time, you can vividly imagine where your life would have gone, the road that was washed out before you. 

This year, to distract myself from my inevitable hamster wheel of treatments, at the recommendation of my buddy who did the same for her 34th year, I have decided to do as many things as possible (within reason) that make me uncomfortable, that scare me, that push my limits. I envision lots of nervous laughter, and triumphs. Probably a good deal of sweat, and awkwardness. Living with cancer/brain tumors makes it impossible not to live in some state of fear. More so than most. I challenge myself to open my arms this year to fear, to look it in the face, cock my head, and give him a wink, then jump.

So cheers to another year! This time, instead of cancer pushing my limits, always cancer driving my fear, or cancer making my life uncomfortable, I will take control and steal away some of cancer's power. I'm ready for a different type of fear, and a better adrenalin rush.

Here's a few photos from my birthday celebration, checking out Crystal Mountain, with Dan (including my attempt at a photo bomb). The year is already off to an exciting start... 

The Issue of Supplements During Treatment

The information about whether or not to take supplements during treatment is confusing. The vast majority of oncologists say to avoid all supplements, especially anti-oxidants, during treatments, but I think that's a shortsighted stance. There's a plethora of research studies showing the benefits (and sometimes the downfalls) of adding a few supplements to your protocol. There are many oncologists that are anti-supplementation, but then there are lots of cancer nutritionists, and other alternative specialists who are pro-supplementaton during treatments. Not knowing who to trust, we often end up avoiding healthy supplements that can act synergistically with our radiation/chemo/etc., or we pick the wrong supplements which can lessen the cancer killing effect of the treatment. But how do we know what to do? Who do we trust? We don't have the time, or often the brain power, to sift through everything when we're dealing with a new diagnosis, or the progression of disease. That's why I was very excited to see that Ben Williams, Ph.D. updated his research on the issue of supplements during cancer treatment. You may recognize Ben Williams, Ph.D. as a glioblastoma fighter who wrote the book, Surviving "Terminal" Cancer. He's an incredible resource who is very active in the brain tumor world. This guy knows his stuff. His paper is 42 pages, which may seem overwhelming at first, but when dealing with such a complex issue you really do want exhaustive information. This is truly a fabulous resource. You can access the document below, just click. Enjoy.

The Role of Supplements (including Anti-Oxidants) in Cancer Treatment

By

Ben A. Williams

The Glass Box

I hate saying this. I hate that this is the situation; that this is how I feel. But, this is a tumor blog and it's where I go to share my journey, so here goes nothing....

Tonight I went to a couples baby shower. It was at an understated, yet trendy bar full of friends. There was laughter, and hugs, and back slapping, and smiles. The celebration was for a specific husband and wife, but half of the women there were pregnant, so by default, it was a celebration for several along side. 

I got the chance to catch up with my beautiful friends, which was lovely, and yet painful. I even cried on the drive home, which is incredibly rare.

Throughout the evening, as I got caught up with people's lives, I couldn't help but notice the disparity between who I would be if I hadn't been diagnosed (a career, the ability to drive, financial stability, perhaps children). As I listened to people speak, with a smile on my face, I felt myself mourn for my old self. I mourned the person I could have been, of who I was on track to be.

I love watching my friends deliriously happy, so excited with their life's journey. But it's also confusing. It's uncomfortable that being around friends makes me both happy, filled with joy, and yet regretful, deeply saddened. I hate that I feel that way.

Currently, I am stuck on a hamster wheel of treatments and won't be finished for years. My life is lived in 4 hour increments, and I should be thrilled by that luxury since it implies that I'm doing well. But it is also extremely taxing. I can handle the stress when I live in my bubble, when I bound around the house being silly with Dan, or off jogging with Emma. It's times when I'm social that hurt too much. That make me feel isolated within a crowd. I can't relate. It's as if I'm in the room, but surrounded by a clear glass box. Alone. This girl who used to be incredibly social, even labeled vivacious by some, has morphed into an introvert. A person more comfortable by herself.

I am very grateful to be alive, please don't get me wrong, but I don't know if I will ever get used to living in limbo. I am putting all of my energy into these treatments, all of our money, and energy, and if they don't work then I will have wasted precious time that I could have spent crossing stuff off of my (yet to be written) bucket list. 

I hate that I'm so self absorbed that I couldn't even completely enjoy such a special occassion. Lots of "hate" in this post. I hate that too.

Orthoexia? What!

Holy. Cow. I have borderline orthorexia. 

It's an actual thing. 

I was watching the news this morning and a story came on about a girl who went vegan and about a year into it she realized that she would stand in front of the fridge for 20 minutes, overanalyzing her food choices, afraid to make a decision. She was obsessed with picking the healthiest choice (the definition of orthorexia). Hearing her story was like looking into the mirror. The girl became malnourished, having an extreme case of the disorder. I would consider myself more borderline, but the truth is, my obsession with food has lead me to become weak, have more seizures, limited my activities, and has isolated me from social settings. It has been too much. My relationship with food has become unhealthy. 

The tricky part, is that in the case of cancer many people say that their extreme food choices (orthorexia) saved their life. That it stopped their tumor growth, or even healed them. Of course, as with everything, there's a fine line, but I'm realizing for me personally, I've crossed it. Analyzing food has been all encompassing. Food has come to signify life or death. It has become my god and my devil. 

This realization, of orthorexia, comes just several days after making the choice to stop being so restrictive. I have stopped checking macronutrients (even though I can mentally size up grams, and ounces, and calories, and fat content and carb amounts of various foods - vegetables, fruits, meats, dairy items, oils, nuts - by memory) I no longer eliminate things from my diet. I made that decision after observing the fact that my seizures have gotten worse the more I restrict, the more I obsess and remove foods from my diet.

I should say, I can't, nor would I want to, unknow what I know about food. I'm now allowing myself to use my vast knowledge (and part of this is me acknowledging that I am educated enough to make great decisions) to eat the way that I need to for energy, for seizure control, and for tumor-fighting. Every body is unique. Each body has specific needs, and now that I've tried everyone else's protocols, I need to just create my own. I finally feel comfortable enough, after trying every tumor diet I could find, to fly on my own. Now I'm truly off in unchartered territory. My own rules. My own way. I feel empowered, but nervous. My training wheels are off. 

I have always put so much weight on food choices, since I was diagnosed, then progressively so as I researched more and more. Now it's up to me to make the best decisions. To compile all of my reading, my knowledge, and live healthy, to fight my tumor, and eliminate seizures, and have enough energy to get out and enjoy life. I hope I'm making the correct decision. I guess we'll find out in October when I have my next MRI. Perhaps, I just need to have faith in myself. And remind myself that no one diet (vegan, raw, restricted ketogenic, paleo, vegetarian, Budwigs, macrobiotic...etc.) cures cancer. But a percentage of people do well on each one. I need to go back to listening to my body, and quit beating my head against the brick wall of food/diet. 

I leave you with a photo of Charlie, my largest, happiest, cucumber plant. Note to self: I should probably stop naming my plants because it makes it harder to eat them. 

Day 3 Water-Only Fast

Oh man, I broke. I cracked. This morning I woke up with such strong hunger pangs that it was almost unbearable. I tried tricking myself with pint after pint of water. I sipped a few herbal teas, and paced around the house. I thought about going for a walk around the lake, but worried I'd get to the other end and run out of energy and become stuck. And it's cold today, and rainy (finally!) so that seemed like a bad idea.

Overnight, my stomach collapsed, and appeared inverted, concave. At least that's how it felt to me. It was very uncomfortable, kinda painful even. I still made it several hours, but finally relented. I grabbed the most gentle option, my trusty new favorite fruit, the papaya.

I only ate half, and discarded the seeds. Figured they would be too hard on the stomach. You can eat those gorgeous blackish green seeds. They taste like a combo of cracked black pepper and mustard. They're a fabulous anti-parasite food. You can toss them into salads (yum!) or add them to smoothies to clean your system, it's pretty neat. I love using unique foods for health. I figure there's so much that we don't know about the benefits of various food parts, but I'll bet there's a lot of healthy synergistic properties.

So, technically, I failed. I missed my goal by 10 hours. I ended up on my water-only fast for 62 hours. It's definitely the longest I have ever fasted, so I still feel accomplished. My plan is to remain on the fast to the duration, having only broken with that (delicious) half of a papaya. And man, I do feel better after having eaten a little. I imagine that the shorter than anticipated fast was still cleaning out some of my damaged cells, and probably stimulated my immune system to some degree.

From all of my reading around the interwebs, so many people said that when they broke their fasts they had no desire for junky food. That's how I felt yesterday, but man, I sent Dan a text a little bit ago and told him I could eat everything at PCC and then finish it off with a case of movie theater boxes of candy. Even if it was Good n Plenty which are categorically disgusting. So much for this changing my tastebuds, or squelching cravings. Oh well. Guess I still have to rely on self control. Less fun.

A couple of friends, during this experience, voiced concerns about the fast. A couple (remind me to send them Christmas gifts) worried that I'm too thin for a water-only fast (might be the first time I've ever heard such a thing about my body). Anyhoo, I am definitely not too thin. And to prove it I will share my stats.

Age: 33
Height: 5'7 (technically 5'6 3/4)
Weight: 140
BMI: 22
Body Fat: 28% [I still think the guy at the gym over-pinched with the calipers...:)]

So, according to the charts, I am literally dead center in the normal range. Healthy. I think that, perhaps, with the expanding waistbands of our culture - and the world - we have a skewed perspective of normal. I take it as a huge complement that some of my friends think I look "skinny" but ultimately, the optimum stat that I need to achieve is a body fat of 22%. A 6% drop. That's what I'm working toward. Body fat not only holds energy for cancer growth/tumor growth, but also toxins are stored in your body fat. Clearly, you don't want to waste away, you don't want to drop into an unhealthy range, but according to theorists, there is an optimal range for fighting cancer and they purport the 22%.

If you don't have much excess, it allows your body to focus on keeping your immune system strong. Your body can then clean out damaged cells, and keep things running smoothly. There's even research out there that people who live slightly underweight, have a lower incidence of cancer (lucky dogs). So, I'm trying to be healthy, to turn my body into a cancer fighting machine, to give her the most optimum chance to clean out tumor cells, to remove her tumor snacks. A side effect may be looking better, but that's just a byproduct. This is not driven by looks. I already feel good in my skin. More so than ever in my life I am confident. Probably since I have a different view on life since diagnosis. But I do acknowledge that I probably have a good ten pounds of pure fat that's visible on my body. I could lose that and still look really normal. I just need to curb my enjoyment of gorging on delectables. I don't know how I will ever kick my inner monologue that if one cookie is delicious, 10 is better. I feel like I was born that way.

I tried going raw vegan for two weeks and it made me feel awful. So I know that RV is not the lifestyle for me. I have a pretty good idea about what to do, and how I will be successful. It has to do with lots of veggies, and an egg here or there, and some nuts from time to time, and bits of fruit, but mostly it's about a caloric cutback. There will days that I don't restrict calories, perhaps for a hard workout day, or for someone's birthday celebration (like my own in August). It has taken me so long to figure out this whole diet thing, and laughably, I'm still living fluid with my beliefs. But it seems to be getting a little easier with the mantra of cutting calories, cutting portions, and eating clean, whole natural foods. It's all common sense stuff. You'd think I would have figured it all out a lot sooner, but I had to try several various cancer fad diets, hoping for a cure. Now I'm a little more reasonable. Hopefully this one works.

Day 2 Water-Only Fast

I have had bouts of hunger throught the day, but mostly I just feel great. I cleaned the house, and did laundry. I talked to a buddy for hours on the phone (a rarity), and laid down for a nap. I am amazed by the amount of time I spend on food related energy. What's for breakfast, what's for lunch, what's for dinner, what do I need, chopping, blending, taking out the compost, washing dishes, going to the grocery store, thawing things, etc. I keep walking into the kitchen to get more water and am amazed by how clean the kitchen remains. 

I feel a little disappointed that it'll be over tomorrow night. It is all happening so fast. I can't believe how much I am enjoying this experience. It sounds insane, masochistic even, and I would never have imagined this as an outcome, but there it is, I can't deny it. Life is so much easier, the day oddly fluid, when you don't have the punctuations of meals. No more decision making, no more worrying about macronutrients, no more worrying about blood glucose spikes or counting calories. It's a mental vacation, and freedom from that judgemental voice always monitoring my food choices. I know I can never win anyway.

I don't want to downplay the level of difficulty, because it certainly has been hard, but it absolutely has wonderful benefits well beyond health. If I worked outside the home I don't think I could manage, not with the seizure issue, but thankfully, I don't. I have the safety zone of my little nest, and it continues to nurture me to health.

It's All About Images

Good morning. Sorry I haven't written in a week, I've been dealing with a horrible reaction to one of my treatments - cystic acne. GROSS. It has been all over my entire face, and one of my saddlebags. (How is that even physically possible?!?) It was absolutely disgusting. I've since kind of gotten it under control. My friends didn't believe that it was that bad (apparently I'm always saying that my skin's broken out when I only have a zit or two - whoops, the girl called acne too many times) so I had to send them pictures. And finally, with solid proof, they relented, agreeing that my breakout was major.

I had been dealing with acne for the past month, and I wrote it off as stress related, a disappointing side effect of MRIs. But as it continued to worsen, even after the MRI, I realized that I needed to reevaluate the issue. First, I stopped all treatments except the blue scorpion venom. Then I looked back to the times I started various supplements, and I talked to Dan, analyzing if we remembered any bouts of acne. Finally, looking back to my log book (which is not as thorough as it should be, but still quiet helpful) we pinpointed the PolyMVA as the most likely culprit.

I also wracked my brain about any changes in cleansers, laundry detergents, etc. but nothing had changed. I started looking into the PolyMVA and read that it is comprised of a variety of B vitamins like B1, B2 & B12 (and some other antioxidants). According to what I've read around the internet, B12 stimulates sebum production (the oil on our skin) and excessive sebum is what causes cystic acne; it's what clogs the pores. Some people with even the slightest supplementation of B vitamins breakout in pimples, and I was doing major doses. Anyway, I'm sure you guys don't really care about acne, but I'm telling you the acne on my face was debilitating. I didn't leave the house until yesterday. Almost a whole week. Man, I'm vain. But seriously, my face literally hurt, so it wasn't actually purely about looks. I talked to another BT (brain tumor) friend who has been taking PolyMVA for, gosh, I think a year or two and she has never had any problems. But each body is different, and each body's needs are different. And I have exceedingly sensitive skin, it's practically impossible to please, so even the tiniest of adjustments could lead to a nuclear situation.

So how did I fix it? Well, I still had several days worth of Accutane, so I started taking those again. Accutane dries up sebum production. I also started putting tea tree oil on my face, a more natural way to do the same thing. For the first few days, it was not getting better, and I was frustrated, discouraged. Good thing my parents were headed over for the West Seattle all school high school reunion Friday, and my dad's 50th for West Seattle on Saturday, and mom packed the big guns for me. Gotta love moms, they're always saving the day. I've been terrified of chemicals, never knowing what contributed to my cancer, so I try and do things naturally, but sometimes in order to get things under control you have to make a deal with the devil. It took several applications of Retin-A, and several applications of Benzoyl Peroxide. Both, I believe, are known carcinogens (at least in some countries - our country likes dispute carcinogenic claims, even when well documented). But I HAD to. I have pictures to prove how disgusting it was, and I don't want to show you, but at the same time, you almost have to see how disgusting it was to understand. It's embarrassing when your skin is rupturing. It's your shell, your image. It implies that there's something fundamentally wrong with you. I'm trying to live as a vision of health, so when something like this happens it shakes you to your core. You feel helpless, disgusting, like a failure.

Okay, I can't do it. I can't move myself to upload the photos, or even one of them. I'm too embarrassed. Too proud. It's weird, I mentioned this to a friend a few weeks ago, that although I'm married, and fighting cancer, I still want to be seen as attractive. There's this thing that happens when you get diagnosed with a "terminal" cancer - maybe for any kind of cancer, I don't know - people love you, so they feel bad for you. They may not describe it as pity, exactly, but you get tossed into a different category. Almost ambiguous, and asexual. People see your trials, and know your struggles, what you're working with, and you become less human. Or too human. You become either too vulnerable to tease and flirt, or you become too scientific, too medical. Of course, here I am blaming everyone else, maybe it's me, maybe I'm just too serious. That I'm different. That's possible. I've talked to others though, in my position, and there's definitely a divide once you're diagnosed. People don't know how to handle us. It has to be awkward, I guess.

Regardless of all the above written word, I have to say that acne - although frustrating - is a great issue to have. Acne is fixable. Just a few weeks ago we were worrying about radiation, clinical trials, discussing what we would do if the tumor was back. And I wish I didn't care about being attractive. Dan has always found me sexy, even when bald and simple minded, that should be enough. Who cares what other people think? Right? I don't know why it isn't just that simple. Ego? That's embarrassing to admit.

Here's a much cuter picture than me, it's my father's senior class photo. Isn't he adorable?!? Man, I can finally see Kaal (my brother) in that face. Crazy how we grow into our parent's images. Pretty cool.

Working With A Governor

You know what's crazy? You get diagnosed, you go through surgery, you recover, then the real test comes in living your life knowing that you have tumor cells in your brain, that the tumor (always) comes back (according to your doctors) then you start over again. Each time they dig in your brain you hope you wont die. You hope that the majority of your brain, the stuff that makes you you, will remain after they fiddle. That you won't be too damaged. You know before hand that you'll never be the same, no one ever is, but all you can do is hope that it's a minor shift. You go home, you fight, you research, you add treatments, you change your diet, you work incredibly hard. And at the same time, even though your whole life has been derailed, all of your dreams put on hold, except for a twinge of sadness here or there, you're just thrilled to be alive. You live your life revolving around scans and treatment, knowing each scan could be all it takes to devastate, that each treatment may not be enough. You battle fatigue, you battle the horror of seizures. And all the while, through it all, you're just happy to be capable of reading, and writing, and walking, and running, and laughing, and recognizing the beauty of each moment, of everything around you and most of all that you're able to fight. Cancer has a way of stopping the world from spinning. Everything happens at once, then not at all.

Tomorrow morning at 8:00 am is the MRI scan. Again they poke, jerking that needle into my vein, readying my body for the contrast dye that will tell all of my brain's dark secrets. Each MRI, each scan, is the biggest test of my life. Essentially, I live each day studying for this moment, for each exam. I remember my parents telling me when I was in my 20's, with admiration, that I was the consummate student - that it was my lifelong passion. We just never knew that I would be attending my own university, earning my own solitary degree. A degree in my body, my health, my survival. I love learning about the facets of tumors, of tumor life, how to outsmart them, to jump the hurdles. Sometimes it's scary. Sometimes it makes me viscerally ill. Regardless, I continue. My only wish is that I would have more energy, that my brain wouldn't shut down. Since the first brain surgery my body has a governor, and there is nothing I can do to change it. I work within specific boundaries that my body dictates. You guys know I fight it, pushing too hard at times. I keep hoping that just like with a muscle, all my mind needs is exercise to gain endurance. Doesn't seem to work that way though.

Sorry for the delay in my email responses, I'll probably be backed up for the next week - I'm still having to take daily naps to catch up after all that research. Please send a second email if you have an urgent question and I'll do my best to get back to you. For now, Dan's sneaking me off to hit golf balls (a close second to my favorite - the batting range) to de-stress.

As ever, but profoundly obvious, my fate is in the hands of the universe. Let's hope I've done enough to keep that parasite at bay.

The Most Poignant Riddle

Good morning. Been resting up from my worcation. I went to my parent's house to sleep, and meditate, and watch trashy Bravo TV (we don't have television anymore), but I got trapped in the vortex of the tumor world. Researching to make sure that you're living right, is much more satisfying than any other pastime. The tricky part is that my brain gets fatigued pretty quickly, and by Saturday it was fried. That morning Dan and I drove to the senior center where Grams lives. We brought her some goodies, and pushed her around outside. As we were driving home I had a mental lapse, I literally couldn't remember where I lived. Weird. It took several minutes for me to remember the image of our home. My mental Rolodex flipped from house to house, city to city, and finally I figured it out, but it was scary. Several moments of dementia. I don't know if it was a seizure thing - it didn't feel the same - or just lightheadedness from the CR, or worse yet, tumor growth? It scared Dan. It scared me.

I'm chalking it up to mental exhaustion. No need to panic. The MRI is near, and results will be available next week. We will know what's going on in my brain (to a certain extent) soon enough. I kind of don't want to know what's going on in there. I'd rather just keep going along with my current path. If the tumor is growing again, I don't know what my next step will be. There are a few promising clinical trials out there, and some positive off-label drugs I could add. I know that if the tumor is growing the next recommendation is radiation. I also know that as an IDH1 mutant glioma fighter, radiation is said to be more effective. That's new information that has recently been coming out in the research, anyway. It's a double edged sword because it's always great to have more treatment options, but at the same time I really, really, really don't want to do radiation. So, we'll see how it goes.

In the meantime, after last week's research, I've decided to go raw vegan for a bit. It's mostly veggies and some fruit. I realize that there are all kinds of diets out there for cancer, and brain tumors; the RKD, vegan, vegetarian, Paleo, caloric restricted, macrobiotic, you can do the Gerson therapy, or do the alkaline diet, and you can find someone who has survived from each one, even survivors who have never changed their diet and still live on SAD. It's kind of a crapshoot. There is no surefire diet to stop brain cancer, or any other cancer for that matter. These molecular aberrations will not respond to the same diet, nor the same treatments. Cancer may be the most poignant riddle of all time. But with that being said, there are direct correlations between elements of diet and tumor growth. It has been proven. For example, IGF-1 in animal protein, artificial sweeteners, sugar (of all kinds), artificial dyes, nitrites & nitrates, MSG, just to name a few. So what do you do? Do what feels right. We are all walking this walk together, but at the same time we have to use our own legs. I love learning from you guys, and I appreciate you sharing your knowledge and wisdom. I wouldn't be as far as I am without your help. When I share things, I don't expect you to jump on my bandwagon, I just want to give you the chance to check stuff out and see if it helps your situation. The IGF-1 issue in animal protein was definitely a game changer in our household. Thank you for all of the comments over the past several posts, the dialog was exciting, and very instrumental for Dan and I to adjust our lifestyle.

In one of the comments there was a mention of a couple of documentaries, the most profound being (in my opinion), Eat, Fast, Live Longer. If you enjoy nutritional documentaries, or just want to get your mind blown, please check it out below. (If you have any problems viewing it CLICK HERE.)


Eat, Fast & Live Longer HD by limoslight

Thanks again for all of the continued help as I navigate this curious journey, I can't measurably express my gratitude. There is such power in numbers.