Can't Fly Blind

Been scrambling to get a MRI since Friday, because I know that I can't walk into this surgery blind. I haven't seen what's going on in my brain for almost two months, and things can change. I'm not saying that the tumors are gone, or that they've shrunk, or even that they haven't exploded in growth, but my intuition keeps nagging at me that I must know what's going on up there before I am at peace before the bone saw.

I don't think my request is that unreasonable, however, it's just not how things are done in medicine. Right now, if nothing changes, I'm scheduled for my MRI, and fMRI, this Thursday, the afternoon before my early morning checkin for tumor removal. The problem is that radiology reports take 24-48 hours to complete, and I've been told by my surgeon, and the team at UCLA, that we won't have that report in time for surgery. Apparently the actual radiology report (which measures changes from previous scans, and compares growth, etc. isn't necessary for surgery).

But what if there are changes? I don't even know what's going on up there. 

I don't know why I need this so badly, but I don't want to lose my surgery date, we have uprooted our whole lives, taken time off of work, set up help at our home for our cat, traveled, adjusted, planned, and now I'm told that even with a week's notice, I can't get an MRI to see what's going on in my brain.

I asked for an additional MRI to see if we could facilitate that. I offered to pay if insurance doesn't cover it. We have called facilities all over the Los Angeles area and I can't get an MRI without a doctor's referral. THIS IS MY BODY. THIS IS MY BRAIN. Why is it so difficult for me to get this simple request?? I am the customer. I have insurance. What is going on here, in medicine, that I cannot be an effective advocate for my body?? It is not unreasonable for me to get a 45 minute MRI before a surgery, to be put at ease, so that I can undergo a life or death situation. Let's face it, it's a very dangerous operation. This is not a broken bone, it's my mind they're digging into.

I don't want to push back the surgery date, I don't want to work with anyone other than Dr L. I have 100% faith in her, and I am grateful for her compassion and meticulousness. She's brilliant and I absolutely adore her. I am incredibly grateful for the opportunity to be her patient and to have the ability to get whatever amount of tumor she's able to successfully remove, but I just need to see/know what's going on in my head before I can feel comfortable. I'm even having dreams about it. The desire is permeating everything I do. My intuition is going full force. 

So, dad and I woke up in the 5 am hour and we're headed to UCLA neuro today, to talk to people face-to-face. To be clear (since writing may not convey my tone), I'm not angry, I'm just hopeful that by sharing my deep need, and being available all day, perhaps there will be some people working there that can help facilitate my needs. I know I'm being a pain, and that it's an abnormal request, but I just feel this so deeply. 

My gut has served me in the past, and I won't start ignoring it now. Even if the tumors are shockingly massive, at least I will know, and I can be prepared for what lays ahead.

I call her Mary, our Jasmine vine.
She perfumes us as we leave, and cleanses us every time we arrive.

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 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.

Stabilizing Blood Glucose

I was worried, while I was out of town that my little garden might have died from the heat but alas, instead, my flowers were blooming!

I'm starting to feel more rested. I had a fabulous 11 hour sleep last night. It was glor-eee-ous. Since I'm back and I have less than 10 days before my MRI I wanted to hit my restricted ketogenic diet hard, but my blood glucose numbers were wild. I don't know if being on the restricted ketogenic diet causes your body to become more sensitive to insulin or perhaps desensitizes you, but it has been insane. Before I headed out to Friday Harbor last week I had an episode where my blood glucose fell so low that I felt like I was having a seizure. We believe it was not a seizure though, just a severe hypoglycemic attack. It was very scary. Because of that episode, we decided that while on vacation I was not going to be fasting or restricting calories, or being nuts about food choices. As you know from the previous post, my body was all messed up from traveling and excessive excitement, so it's probably a good thing that I wasn't being crazy about my food too.

Yesterday, back on my regular plan, I was freezing and very dizzy. I wasn't even doing anything, I was sitting down. I quickly decided to check my blood glucose and it was 45. That is dangerously low. I was having problems thinking, it was confusing me to even work my blood glucose monitor - I couldn't figure out which end of pricker thing to draw blood. I immediately ate 2 ounces of nuts (that's quite a bit), and it caused a temporary rise of 13 points, then within moments I was back down to 51. I couldn't stabilize my numbers for the life of me. Worried I was going to endure a hypoglycemic seizure, I ate half of a banana (definitely not ketogenic). I don't know what's going on in my body, but this tumor killing blood glucose range of 55-65 for Seyfried is very, very tricky. And if you're not careful, it can be dangerous.

I know I can figure this out, and I know it will continue to get easier so I'm not worried, but I figured I'd share my experience in case anyone else out there trying to do Seyfried's plan had encountered similar problems. It's very tricky playing with low blood glucose when you already have a seizure problem. Almost like playing with fire. But if we didn't play with fire we wouldn't have much of our food. Know what I mean? And I know that it's important to keep my blood glucose very low in order to keep circulating glucose low so that I minimally feed the tumor. I say minimally because it's impossible to completely limit glucose. Our body creates glucose from excess glutamine (protein), and also I've read that our bodies can convert one of the triglycerides from fat (not much, but still important to know - that's why you can't eat unrestricted fat) into glucose. Anyway, I'm getting too detailed, which can get boring. It's all stuff that you'll read about if you choose to get into this lifestyle. In fact, here is the most comprehensive website that I've ever found about the KD. It is inspiring, encouraging, informative, and I enjoy rereading it often just to boost my excitement about the program. This diet is fabulous for anyone, it benefits cancer patients, those with Alzheimer's disease, diabetics, those with seizures, and so much more. The information is fascinating, whether or not you want to follow it. Enjoy! http://www.ketogenic-diet-resource.com/

It's too bad this restricted ketogenic diet is so clearly proven and undeniable. Carbs are delicious :) I can't help but notice the similarities between carbs and cancers, and the brain, with seizures, Alzheimer's, mental health, migraines, and of course diabetes, and so much more. We are killing ourselves with carbs and sugar. The carbs and sugar aren't just making us fat, it's literally causing diseases, and cancer, and brain metabolism issues. Looking at it now, it has become obvious to me. There's actually a new prescription "food" named Axona which helps people with Alzheimer's disease. It boosts the body's ability to create ketones so that the brain has more food. The Axona website says that the side effects from Alzheimer's are due to the brain's inability to metabolize glucose. So, if you're on a standard diet which is all about glucose and no ketones, the effects of Alzheimer's are going to worsen. However, if you switch to a ketogenic diet it will lessen (theoretically - I am not a doctor) the side effects, strengthen the brain, and possibly even heal the brain a little. There is a lot of research out there, and most doctors don't know anything about diet. (Blah, blah, blah, "heart healthy diet" - no bueno, that's actually the opposite of what you should be eating.) I'm not trying to be rude, it's just a slow process to integrate new research into hospitals. Practicing doctors are very busy and usually aren't researching up-and-coming stuff. Anyhoo, just wanted to throw that out there in case you hadn't heard that the ketogenic diet can help a lot of conditions (not just brain cancer). I hope this info helps at least one person. :) I can't say enough how I wish diet didn't matter, that we could eat whatever we wanted and there would be no repercussions, but it just isn't so. The good news is that we can help heal ourselves (to a certain extent), and that is empowering.

As a side note, people with Alzheimer's don't have to get the prescription Axona powder, they can just get on the ketogenic diet. There's no trick, it's just the pharmaceutical company found a way to make money off the 4.1 ratio of fat:carb+protein. Just wanted to throw that out there. It certainly does provide another tool in the belt though!

My Life is Changing

...and soon, you'll see, the medical world is evolving.

No one fights alone

The bravest patients

The brightest students

Not for profit, for survivors

We play to win

More organized.

More informed.

More engaged.

A new way of fighting emerges

Fight Smarter.

The world's most hands-on cancer non-profit

It's not a charity. It's an army.

Between A Hard Place & A Hard Place

Hi Friends. I am sorry that I haven't written in a bit. I've been depressed. I've been trying to get my butt in gear here and there, but for the most part I haven't had the energy to do much. I've been pretty shaken up by Ethan's death, then Kathi Goertzen's death which was technically due to pneumonia but was truly a complication from her brain tumor. A few days after that I heard that Tony Scott the famous director killed himself allegedly because he was diagnosed with inoperable brain cancer. When I heard that he jumped to his death I thought to myself, "Does he know something I don't know? How bad will this get? Will I regret this journey?" The concept of death has been swirling around me. It's in the air in each room slowly suffocating me. Each time it nudges me, I turn my head and try to ignore what it whispers in my ear, but just trying to ignore Death's comments have zapped me of all energy.

The worst part about the whole thing is that I'm incredibly healthy (other than Hermie obviously). I have EVERYTHING going for me. I have a fabulous life with a wonderful man whom I adore. I have a safe home. I have wonderful friends and a great family. I get it. Conceptually, I understand my great fortune. But, sometimes, I get torn between fear of the monster in my brain, about the projected future of my disease and denial. I can't seem to live in just one life (fear) or the other (denial). Instead I oscillate, fighting, fulling knowing that I if I don't accept the truth of my situation (whatever that means) I'll crumble. And that makes me frustrated. Life is too short to fall apart, and I hate that I'm in this predicament - not the tumor part, but the fact that I can't seem to come to peace with it these days. There's no point in being upset that I have brain cancer, I can't wish it away - but I can try and heal myself with healthy eating, exercise, supplements, and perhaps the clinical trial. But when I'm depressed, I don't feel like taking my pills. I don't feel like leaving the house. I don't feel like dealing with anything. I don't want to talk, or write, or socialize. And that's not me. I hate it when I'm not me. But I don't know how to fix it. People have mentioned anti-depressants, and I appreciate the suggestion, but anti-depressants have been linked to gliomas (they're not sure if it's correlation or causation) and that terrifies me. I feel anti-depressants aren't an option.

Ferry ride to FH

Share The Love

Just this afternoon, I found out that a high school friend passed away over the weekend. A week ago, Ethan sent me a message letting me know that he read the blog from time to time and that he felt inspired by what I write, and what I'm going through. I was shocked by the message, and incredibly moved. I have felt so vulnerable, and to get his love and support helped empower me. Please remember that in just a few sentences, a few words, a little message or note, you can completely change someone's future. I'm not saying this for my sake. I'm not asking for people to send me messages. I'm sharing this story with you so that Ethan's love can be spread to others. Please take a moment to remember how quickly life can change. Please decide to say the things that you've been meaning to say. A small kindness, that takes only a few moments, can ultimately change the direction of another person's life. Words are powerful.

Wes & Ethan Edholm

I learned that we lost Ethan this afternoon, and this evening I learned that we lost Kathi Goertzen, the local anchor woman. She had been battling brain tumors for the past 14 years. Today is a crisp reminder to cherish each moment, each friend, each love, each family member, the cool breeze, the scent of summer air, each bumblebee and gorgeous green leaf. Please take a moment to read this, then close your eyes and take a deep a breath - slowly inhaling as much as you can. Savor the smells around you, they might be sweet, of fresh air, or the pungent scent of a stagnant dinner. Either way, you're alive; remember that you're lucky. Don't miss the opportunity to relish each moment, life goes by so quickly. Instead of having regrets, share the love in your heart. You will be glad that you did.

I'm Pooped.

I've had a wonderful past several days, but as it says in the above title, I'm pooped. Thank you Jenny for coming on Thursday, then Jess & Michelle on Saturday, and finally Sarah on Monday. I am dizzy with exhaustion, but it was absolutely worth it. Between visits I read an amazing book sent by a dear friend from Friday Harbor (another brain tumor fighter), titled The Power Of Two: Surviving Serious Illness with an Attitude and an Advocate, by Gerri and Brian Monaghan. It is an uplifting, yet serious book that helped stoke the fire inside. I need success stories to keep a positive outlook. Anyway, my head feels like it's exploding. In fact, don't tell anyone (ha ha...just kidding - I realize this is the internet), but I'm still in my pajamas. I've been in bed all day. I had big plans to try and get to the bank to fill out some paperwork (we're pulling away from those big nasty banks and headed to our old credit union). Oh well. I will not be leaving the house today.

We also adjusted my artemix supplement last night by adding a pill of piperine (it helps the artemix absorb while in the large intestine). There's just so much research to be read, and it's some pretty deep stuff. It's tricky because it's important to keep up and read as much as possible with this artemisinin, but at the same time I'm absolutely exhausted. Danny, my brother, and my dad have been helping sift through the research, (mom's studying MRI stuff). We even have my friend Meghan's husband Sean, and his father reading up on it (Thanks guys!!). There's just so much to know, so much to figure out. It's overwhelming. I don't understand why there aren't more doctors recommending these supplements. There are all kinds of success stories in Asia, and Europe, and success even in the research studies in the United States. Why aren't doctors prescribing artemisinin in the United States? Why do they want me to do radiation when it won't prolong my life? Radiation won't kill or stop the brain tumor's growth, and it will not shrink it. However, sweet wormwood COULD. What is wrong with this picture?!?! Depending on the dosages and protocol, we are finding research with an average of 40-50% success rate of either stopping, shrinking or killing the brain tumor cells. Why isn't this information out there for other brain tumor patients? We're told by our "amazing oncologists" that they don't know what causes brain tumors, and that there really isn't much you can do other than wait and watch. Then, once it starts growing again, they zap the tumor with radiation which won't even increase survival time. What is happening here? The sweet wormwood has almost zero chance of neurotoxicity (only in extremely high doses), and if there are any toxic effects they are reversible with steroids and other medications - no effects have found to be permanent (except for the published account of a poor child who was given a massive dose via suppository - it was in an anti-malarial move). What is happening, or what HAS happened to our medical system that we don't appreciate several century old medicine like herbs and instead favor a failing system of zero success. I don't get it. It leaves me confused.

I'm overwhelmed with things (way to state the obvious Jess), and I need to catch up on rest before my surgery on Friday. It's finally time to have that moderate dysplasia surgery on the nasty mole on my right breast. The doctor says I can't lift more than 10lbs after the surgery for 2 weeks. TWO WEEKS? Whaaat? Instantly I thought to myself, "How much does the vacuum weigh....?" Is that sick or what :) Anyway, I'm sure the restrictions are just to be safe, at least they'd better be. I can't promise that I'll lay off the vacuum. I have a black hairy dog and a gray fuzzball of a cat - two weeks is a death sentence. We will have shag carpet within four days. Gross.

Ok, sorry for the random post. Back into bed.

Day 3: Broccoli Sprouts

Things are not looking very good on the sprout front. I'm actually afraid to take a photo to share...I'm going to suck it up though, and go take one. Cringe. Ugh. I don't know what I'm doing wrong. My mom said this was going to be, and I quote, "Sooo (very exaggerated) easy."

I'm so disappointed with my sprouts. Good grief. I'm capable of growing things outside! I swear! Here's some proof. It's not quite the garden from last year, but there's still a bunch of delicious and beautiful things in there.

Apparently, my wild bunny has hankering for the spicy stuff!

Last night, Danny and I were sitting on our patio when we heard a hummingbird swing through. Dan grabbed the camera, and took the follow photos. As you can see, the little guy wasn't exactly the hummingbird we were expecting...

Click To See A Larger Photo

See what you think. I'm on Team Moth. He's pretty when he's looking away, but jeez, that mug is a face only a mother could love.

This is what I do to distract myself from the unknown. I'm scared about the seizures. The other night I woke up at 3:30am and I had a sort of panic attack, or crazy headache, I'm not sure exactly what it was. I don't know how to explain it. Anyway, my mind was going a million miles per hour with thoughts, then everything went blank. I felt like I was about to have a seizure. It was very scary. I ran to take my pre-seizure pill and then laid on my back in bed, trying to practice my meditation breathing technique.

I don't know what else to do. I take my seizure medicine and I sleep as much as I can. I exercise regularly, I'm only running 10-11 minute miles for 30-40 minutes every other day, but I'm working toward going faster again. The only other key, that I can think of, is a healthy diet. I'm not sure what else I can do. I'm reading a book about meditation and trying to practice stress management. I honestly am at a loss. I think I seem completely normal to people, but I sleep so much, and I'm exhausted constantly. I try to put on a happy face, and usually that's a true feeling not a facade, because I don't want to focus on the scary stuff, but jeez. I feel like I'm continuing to deteriorate. Specifically since the seizures.

Thankfully, my parents noticed my difficulties and talked to Danny. We had all been feeling like we were sitting, waiting, for doctors to radiate my brain. They aren't proactive, their specialty is radiation. Anyway, now we're trying to take another avenue. My parents contacted John Hopkins University for an appointment. We're hoping that they'll review my medical records and they can help us figure out another step in my care. We want to do more preventative stuff. I don't want to waste a moment. It's better to stop the growth than to try and resect again, or radiate.

I know it's pointless to stress about my health, in fact it's detrimental, but those who are around me all the time (my mom, dad and Danny) can see changes in my capabilities. That scares me. And, it scares me that it scares them. I wish this whole tumor debacle would just evaporate, just *POOF* be gone. My parents should be hosting BBQs with friends, laughing and living their lives. Danny should be dreaming about having a life with babies, the family he has always wanted. Kaal shouldn't be worried about his little sister. The rest of my wonderful family, Danny's amazing family, my beautiful friends, everyone - people shouldn't have to worry about this stupid tumor. I don't want to cause stress, but I can see it in people's eyes, and I can see it in their tears. Sometimes the tears are happy ones, other times they come from heartbreak. I'm sorry that this tumor is growing. I honestly thought I would be an exception. As Susea likes to say, "Shoot. Some lucky dog has to win." It's tough to be in that 1%. There's a lot of competition.

Evolution Of My Brain Tumor Diet

Jessica C, my tumor fighting friend, shared information about an amazing scientist and doctor. It gives me hope and a better direction. This whole tumor fight is a constant evolution and I'm grateful for people like Dr Servan-Schreiber. I wish I could hug him for everything he has done for people like me - unfortunately, he passed away just last month.

The Story of Dr. David Servan-Schreiber:

At age 31, Dr. Servan-Schreiber was an ambitious physician and neuroscience researcher who reveled in discovery and glittering science projects. He was a founding member of the U.S. branch of Doctors Without Borders and a rising star in neuropsychiatry. When a volunteer for a brain scan experiment failed to show up, he slid into the scanner himself and discovered a tumor in his brain. Further tests revealed that he had brain cancer.

After conventional treatment, he asked his oncologist what he should change so that the cancer would not come back. His answer was perfectly stereotypical: "Go back to your usual way of life. It won't make much difference." So he continued living his life as he had before, eating a diet high in sugar and red meat, exercising little, and abandoning an earlier interest in meditation.

The cancer returned a few years later and he endured a second surgery, chemotherapy and radiotherapy. Dr. Servan-Schreiber then decided to use his medical and scientific training to explore and investigate how he could help his body to better prevent cancer. His discoveries led to the best selling book: Anticancer - A New Way of Life.

"Being a physician and scientist is no protection from getting cancer. But it allowed me to dig deeply into the medical and scientific literature in search of ways to live longer than the few years I was expected to survive."

"I spent months researching the healing powers of food before I fully grasped my own natural cancer-fighting potential. I met with a variety of researchers, scoured medical databases, and combed scientific publications. I traveled all over the world and consulted experts from nearly every continent."

"The first thing I learned is that we all carry cancer cells in us, even if only a few. But we also have natural defenses that usually prevent these cells from becoming an aggressive disease. These defenses include our immune system; the bodily functions that control inflammation; and foods that reduce the growth of blood vessels needed by tumors." 

"In my quest, I discovered that the list of anticancer foods is actually quite long. Some foods block natural bodily processes such as inflammation that fuels cancer growth. Others force cancer cells to die through a process that specialists call apoptosis. Still other foods assist the body in detoxifying cancer-causing toxins or protecting against free radicals. But most of them attack the disease on a variety of fronts. And they do it every day, three times a day, without provoking any side effects. To avoid the disease, it's essential to take advantage of this natural protection, and nurture it."


-Anticancer: A New Way Of Life
www.anticancerbook.com

If you click the above link it takes you to the website for the book. The diet and information is facinating and gives me so much hope! It's one thing to have hope just because you don't want to give up. That type of hope, I feel, is short lived and empty. I need hope through positive proven actions. By doing everything I can to eat a healthy well balanced diet full of foods from the allium and brassica families, I am increasing my body's ability to fight cancer. The book points out all kinds of cancer fighting foods that specifically help with brain tumors. I love this guy for what he has given me!!

Interestingly, according to the author from above, in petri dishes, garlic is shown to kill brain cancer cells. In order to activate the enzyme (allinase) that fights the cancer, you peel, then chop the garlic and let it sit for 15 minutes. Then you can either add it to both raw or cooked dishes. Who knows if the enzyme is going to cross my blood brain barrier to fight the brain tumor, but what the heck, it's worth a shot!

My new thing, after having read the articles, is garlic toast for breakfast. I take one slice of Dave's Killer Good Seed bread and toast it. I drizzle some olive, or flax oil, pile two large fresh chopped cloves of garlic across the top and spread bunches of broccoli sprouts onto the slice. Yum!! I stink for a few hours (although no one around me will admit it), but I feel powerful against the tumor by eating garlic. I literally visualize the tumor shrieking like the evil little yellow troublemakers on Despicable Me (the yellow guys would be the tumor cells).

I don't want to be all preachy about food, I'm just excited. You don't have to overdose on the garlic like yours truly. In fact, you don't have to do anything that I choose to do. That's the fun thing about personal choice.

Other than the garlic finding, I'm also excited to adjust my diet to include whole grains which should help keep my glucose levels stable and give my stomach more glue to keep my body fueled. My diet is ever evolving. I'm avoiding coffee these days, which is fine. I just want to avoid seizures at all cost. I had been doing a version of the Paleolithic diet (yep, Marlis you are totally right - and thank you for all the kind things you said. I have so much love for you and your family. I remember hearing about when you were going through your crazy medical ordeal, it was so scary and I didn't even know all of the ins and outs. I'm so glad to hear that you're doing better, but I imagine you're still not completely healed. Please hug your husband, I distinctly remember riding the bus with him, and an occasion when he dared Kaal to eat cat food, and someone bit a slug. Aaaah, childhood memories!), but I just don't think I can sustain the diet long term. I need to include whole grains. The low energy was tough, and that's why I hit the coffee too hard and the coffee bit back with seizures. Now, I just have some green tea and drink a bunch of ice water. I find it helps me with the low energy. That and getting enough exercise, like a walk each day. I'm trying to get a good walk or exercise in, it's not always easy, and sometimes I don't feel like it, but I always feel better after it's done. 

The evolution of the brain tumor diet. Always changing. The more I learn the more I include. Maybe I'll be able to avoid radiation by enhancing my immune system. That would be amazing! I reeeeaaaaalllllyyyy do not want to do radiation, but heck, no need to borrow trouble! :) As soon as the fear crosses my mind, it's already fleeting. Too beautiful of a day to think about such serious things! PS Thank you for the fresh garlic Larry - it is DELICIOUS!!

Larry said (hopefully he doesn't mind me sharing this), "If your tumor could be cured by love, it would already be gone." The interesting thing, though, is that Larry shared fresh garlic from his garden that I've been eating on my toast. So his love, could literally be curing me. How cool is that. Between the garlic from Larry and the broccoli sprouts from Susea, I have the ultimate breakfast tumor fighting team. Thank you guys!!

Evolution Of My Brain Tumor Diet

I have to clear things up...it's going to be a little bit of a tangent, but hang with me.

From the beginning of this diagnosis I have been searching, step by step, to overcome each obstacle. Once I realized, through research, that diet was linked to cancer (duh, how did I not see that), I started changing my eating habits. I reviewed the nutritional information on all of the packages in my life and started kicking out high fructose corn syrup. I stopped drinking diet pop, all energy drinks, and things with obvious chemicals.

Then, I found the articles about the Restricted Keto Cal diet slowing the growth of brain tumors and I learned about the restriction of carbohydrates (all types simple and complex). But the truth is that I can't sustain an extremely low carb diet. When I tried, I found myself clipping right along carbohydrate free, then I would attend a big party with friends and I'd be the girl taking a bite of all of the cupcakes. Every single one. You laugh, but that honestly happened. In my defense, everyone had eaten at least one (I think).

So, between my April MRI and my seizure (which occurred just before my scheduled June 19 MRI) I had quit on my diet. I gave the diet about 50% of my effort. I've never been one to eat fast food, I don't like chips very much, I love vegetables and healthy food, but I also adore artisan bread and glorious handcrafted cheeses. I cherish homemade sweets, honestly, I love them all, lemony, chewy, chocolaty, nutty, I'll take one of each if someone's offering. I took the time between MRIs to celebrate a freedom from my knowledge of food. I ran as much as I wanted, I ate as much as I needed to run successfully, at one point accomplishing over a 10 mile run with an 8ish minute mile. It was beautiful and I felt safe in my choices. I ate ice cream and didn't feel bad. I drank delicious local red wine, I laughed with friends, and felt like a completely normal 30 year old woman.

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

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

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